Living in a Body: Recent Episodes
Hal Walker
Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed.
halwalker.substack.com
Two times a month, I attend an ME/CFS support call on Zoom sponsored by the Bateman-Horne Center. There are regularly almost 200 people on that call. The call is so well facilitated and has been a wonderful resource to me and many others. It’s given me a very positive impression of this not-for-profit organization. If you have a few dollars to donate in recognition of ME/CFS Awareness Week, I recommend donating to the Bateman Horne Center. Find the link below.
Emma in the Dark
The Chionanthus Virginicus in my backyard is in full bloom this week. It’s called a fringe tree. I planted it a few years ago and it keeps blooming every year. I’m glad that I planted it when I did. It just keeps getting more beautiful. I’m glad I noticed it at the farmer’s market and paid for it, and lugged it home on my scooter, and dug a hole, and put it in the hole, and watered it, and fertilized it. Now it’s a real tree on its own, doing its thing — every year.
The tree is covered with these beautiful white fringe flowers. I rolled my wheelchair out there this afternoon just to get a smell. It was worth it. I love that smell. It’s real fruity and fresh and you can smell it from several feet away.
I wish I could send a picture of it to my girlfriend Emma. She loves trees and she loves flowers. She loves the fresh air and loves the outdoors. But she lives with severe ME/CFS and for the last month she’s experiencing complete intolerance of all light. She’s living in a blacked-out room with blackout curtains and an eye mask on. Even opening her eyes in a darkened room is too much light for her system. It’s a terrifying and very difficult situation — with no help from the medical professionals.
From afar, through voice memos and phone conversations, I’ve witnessed the terror of this particular rendition of this illness. It’s all part of ME/CFS, the mystery of this multi-system illness that devastates lives with no known cause and no known treatment.
But Emma is facing it heroically. She’s been through so much with this illness and I have a lot of respect for the way she faces it — with honesty, grace, and courage. But let me tell you, she’s going through the wringer right now. Please send your most loving and caring wishes and prayers to beautiful Emma. Let’s make sure she knows she’s not alone.
The full bloom of the fringe tree just happens to coincide with ME/CFS Awareness Week. May 9 through May 15 is the week that all the people with ME/CFS pull together whatever energy they’ve got and raise up their hands and say, “Look at us! We’re over here! We exist.” The millions missing call out from their darkened, silenced, hidden bedrooms, asking, pleading for help. “Who’s gonna do something about this? Please, somebody pay attention.” Somebody, take note. Take note of all the lack of care, all the lack of research, the lack of treatment, the lack of even diagnosis. All the people living in the dark. There are millions of people suffering without the care they need.
And here’s my little voice spreading the word “myalgic encephalo-fn’-myelitis,” also known as chronic-fk you-fatigue syndrome. (Sorry about that, but it feels so good to say it out loud that way. It expresses my true feelings.) Myalgic encephalomyelitis, also known as chronic fatigue syndrome — poorly named, poorly understood, barely diagnosable, total mystery. Millions are missing. Including my dear friend Emma Kitchen.
Emma and I met here on Substack almost two years ago, and we’ve been in touch over WhatsApp almost every day since. We’ve hit it off real well, it’s been a real blessing to know her. We’ve never met in person, but we’ve been through a lot together in the last two years. And the story continues as she goes through this very frightening time, completely intolerant to light.
I’ve received a couple personal heartbreaking voice memos from Emma that I felt were worthy of being shared publicly. Emma agreed and I’m going to share them with you today in hopes of raising awareness to the reality and the difficulty of living with ME/CFS. Here she is, my dear friend, Emma Kitchen, going through a dark night, waiting for the soul to break through, waiting for the light on the other side, living through the terrifying reality of ME/CFS.
Hi Hal, I’m so scared today. Last night, just loads of fear and stuff came up. Because I just feel like it’s getting worse. My mum having to come to the door, she must have heard me sniffling or something, crying quietly, and she just came in and sat with me. She wants to get the doctor out to come and see me for a home visit to see if we can get diazapam out of them… just to, I suppose, help on the days where I’m panicked, you know, some days I’m calm. But there are days when it’s just panic.
I’m thinking about surrender. It sounds so nice — surrender, but I forget how terrifying surrender actually can be. What it’s actually asking for, because it’s asking to say “yes” to the things you’re most scared of. And I actually haven’t particularly been overly scared of M.E. flaring up and taking me back to that wholly bed ridden place, because I could look out the windows and I know that I can find peace and expansiveness in the sky, and I know that I’ve had deep moments of spiritual revelation in that space, and I know that I could do it. But having sight and sound taken as well — just existing in this void. I am afraid of that. I’m afraid, and it’s almost like this vulnerability of being a baby, just being wholly dependent on those around you.
Okay, I surrender. That’s what surrender is, is it?. Saying, “I’m terrified of this happening. Okay? Do it, then. Do it if you must.” But I am not surrendered to that void. And I don’t like visiting.
I feel so afraid, I just want to vomit. I don’t think I’ve been more afraid my entire life than what I am at the moment. Anyway, Love. I hope you are having a slightly easier time of it... or a much easier time of it.
My mom says she’s keen to get me over into the bungalow. I’m not sure if that’s gonna make me more scared or less. Right now, I just feel like too scared to move a muscle. It’s that willingness to flow with the river. I know that my suffering is coming because I’m afraid and I don’t want this.
FK, Hal. I am fg scared. I am really f**g scared.
And I said that to my mum yesterday, and I completely like just cried in front of my mom. She said that she loved me and she was sorry that she’s not always loving towards me, that sometimes it’s shoddy, but she still loves me. That was... I’ve never heard that from her before.
She said, I’m not alone, and she’ll do whatever she can, and she’s with me in this. She was like, “Oh, I think it’s time that we called for some help from Jesus.” I was like, “What the fk is Jesus gonna do? What’s anybody gonna do?” That’s the whole f*g point. There is nobody is there coming to rescue me? All that’s gonna happen is that this is just about me and acceptance, me and the void. There is no man on a cloud that’s gonna wave a magic wand. There is no amount of begging a God to save me. Anyway - I’ll try to speak to you later. I’m premenstrual. It’s a bad f***g combination.
The Next Day
Morning, Hal, I’ve got the bad fear again. Last night when I got off the phone from you, not long after, I took diazapam. I felt really disorientated, and I could hear, kept hearing sounds like the central heatings buzzing, or the water filters buzzing and these things weren’t on, but I could hear them like they were on. And in the darkness, when I take my eye mask off, the room starts being illuminated in weird ways because of the sensory deprivation I expect. And I just grabbed herbs and put them in a cup and drank them. And I think it must have been a bit of a wild brew, but I really felt like I was about to go mad and I really freaked out. So I took diazapam. I’ve only got a couple left.
I can sit with terror to a point then I think terror really asks for somebody else’s hand to hold yours. And at four o’clock in the morning, there’s no hand to hold and I feel like - you know the terror of being too sick to be able to speak and say, “Can you hold my hand?” Too afraid of the noise that person will make coming into your room, and if that’s gonna make a crash happen. And I feel like, like there’s this sense of failure for taking diazapam… like I should be sitting with my fear and Holding my fear. And you know this is a spiritual practice, and I do it. I sit with fear all the time. I watch it come. I stay with it. But last night was just really terrifying, and I woke up this morning. It’s like, Diazepam helped me just go to sleep. But I woke up with the terror still in my heart this morning. It’s what I’m sitting with now.
My mom came in to bring me some breakfast and I had to tell her that the ordinary signs she was making in the kitchen yesterday were making me crash. She’s really scared. She’s eager for a doctor to come and see me. She’s gonna try to make that happen Monday, but I don’t know what she thinks they’re gonna do. Anyway - I think I’m just saying yes for her relief actually.
You know, Hal, this morning, it’s like, I know the practice, I feel like I am on a razor’s edge, and it’s just this moment, just this moment, just this moment. And fear comes. And these fear narratives come about what the future is going to hold, and what about this, and what if that, and what if the other, and how will you go with this? And and I know that… I know that it’s just a state of now that surrender is only ever asking for now, this moment, this sensation that I can hold it, that I’m equal to it. What I’m not equal to is the storylines this fear is telling me. So I just keep trying to come back to the raw feeling of fear in my body. Where do I feel it? How does it feel? How is it moving? Where is the sickness? What’s its movement in my body? Where? Where can I sense it? Can I accept it in this moment? Yes, I can.
The Course in Miracles has got one of its lessons saying, you know, I place future in the hands of God. So every time I’m getting a fear thought, I’m just saying that. I just find my way back to the spaciousness. And that’s the tricky thing, when you’ve got fear so fierce, spaciousness is obscured, and all that’s left is to just be very present with fear. And as soon as I feel this need to get away from the fear, it increases fear. It increases the body’s response to fear. More adrenaline gets pumped out. So I have to get closer to fear. I love you, Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Join the Conversation!
In the post below, I give a brief update and reflect on my mantra of the current season — “Slow Down.” I recognize that Spring is typically more of a time of ramping up than slowing down, but I hope you’ll consider sharing an area in your life where you have successfully slowed down. Tell us. Have you reaped the benefits? Or… Share some area of your life where you’d like to try slowing down this Spring. Join me in the life changing practice of going slower and share the journey with us.
It may be a new feature to some of you, but I hope you’ll join the chat conversation on Substack by clicking below. If that’s too fast-paced for you, leave a comment as usual.
Now, Even Slower
In hopes of easing the twisted, crashy feeling in my gut, I lie belly down on the bed. My face is smashed to the pillow and turned to the right. My knee is bent and pulled up to the side. It’s quiet in my second floor bedroom on South Chestnut Street but I can hear the cars passing by outside. I’ve heard that it’s sunny and Springtime in Ohio this afternoon. I’m lying here in the dark.
The phrases I choose to say over and over again in my head change from season to season. Since my 60th birthday a few weeks ago, “Slow down” has been the mantra. Under my breath, I whisper, “Slow down, Hal.” Then I ponder what it means , I relax my breath, I smile and I follow it up with, “now, even slower.”
It’s hard to believe that a guy in my circumstances could go much slower, but I can. I’m very aware of an old pattern of urgency in my inner world that ME/CFS is calling me to address. There’s this little Hal voice inside that says, “whatever it is, I want it now.” These days, I’m interested in slowing down on a cellular level. I’m not really sure what that means but I have a feeling it’s one of the keys to my survival of this illness.
My 60’s have gotten off to a rough start. After about 8 months of milder symptoms, a series of “crashes” have left me in another deep state of illness. Since December, I’ve gone from mostly housebound to mostly bed bound. It’s been brutal. I’ve spent these first couple weeks of Spring behind blackout curtains and an eye mask seeking relief from the neurological sensitivities of this baffling illness. My full-time job has been avoiding any of the seemingly innocent activities that could possibly cause further crashes. That includes pretty much everything. My business these days is resting and digesting.
My English girlfriend Emma Kitchen, who also has this condition, speaks wisely of deep rest. Especially after a relapse, she says how crucial it is to let go of all “doing.” Only after settling in to a new baseline do we bring back small amounts of doing over time. Emma’s experience has been that if we use this precious time to dwell in the quiet spaciousness of the present moment, illness can be a doorway to something profoundly beautiful. I believe whole heartedly in her approach, but I follow it imperfectly. You know how much I love a project. I love the creative process. I love making things. I love doing... possibly at times to my own detriment.
Thankfully or not, I’ve gotten lots of practice in this chronic illness way of life. I keep being forced to adjust to what is. I’m learning to take my luck as it comes and after some terrified moans and groans, I eventually fit myself to it. It’s fairly remarkable how quickly I’ve adapted to this recent reality. Time and time again, the illness asks me to slow down. Over and over, I find out that I shoulda’ slowed down much sooner.
I like the “if only I knew then what I know now” game. Just for fun, I’ve been imagining what would have happened if I had taken seriously the concept of slowing down back in 1991 when ME/CFS first came into my life. Maybe I would’ve transcended by this time. I’d probably be a meditation guru... or a super humble teacher of gentle yoga. Instead, I’m bed bound, I have a burning passion for productivity and I’ve got three and a half million followers on TikTok — but not enough energy to record a video.
When I was in the worst of it a couple weeks ago, upon awakening, the first thought that crossed my mind was, “I’m fucked.” The feeling that goes with that thought reminds me of the time I got swept into the ocean by a rogue wave in Kauai. On one side of me were turbulent waves crashing against sharp lava rocks. On the other side was the infinite gray ocean that reached out as far as my eyes could see. Beneath me was an undercurrent that felt like a rushing river pulling me out to my death. I remember the baffling depths of terror that I felt as I realized how deeply fucked I was. Miraculously, in that situation, the right wave came along at the right time and helped push me to safety. The guy that had been standing right next to me didn’t have such luck. His daughter had to attend her dad’s memorial service there on the ocean with the seals and the wind. I, on the other hand, got this bonus life that I’m still living today. Maybe I’m not so fucked after all.
The truth is, in so many ways, I’m blessed. But there’s no denying it. ME/CFS is one of the rougher ones. I don’t wish it upon anyone. In those earliest hours of the morning with intense symptoms overwhelming my nervous system, I can pretty easily convince myself that it’s always gonna be like this and it’s probably only gonna get worse. Instead, I’m grateful to say that I’ve seen small signs of improvement over the last few days.
The more days that I get to live in this body, the more I learn the importance of changing the “I’m fucked” thought to something more productive. So I turn to one of a handful of my favorites -- thoughts like “Yes” or “Thank you, God” or “This too shall pass” or “This moment” or no thought at all. During this recent downturn, The one I’ve gone to most is “Slow Down.” Hey, that reminds me of a song. Remember this one? Sing it with me.
Slow down, you’re movin’ too fastYou got to make the morning lastJust kicking down the cobblestonesLooking for fun and feelin’ groovyLadldeea da da da dum, feelin’ groovy.-Paul Simon
Having raced through much of my life with self-important busy-ness and an inner drive of urgency, “Slow down” points me in the direction of the truth. It brings me back to the moment. I slow down my breathing. I slow down my thinking. I imagine my heartbeat slowing. I picture all the cells in my body relaxing. Then I smile and I say, “now, even slower.”
I like slowing down cause it requires patience and I’ve got little patience. I’m certain that patience is a good things to have so I get to spend these long days in bed practicing. I take a bite of food and then I slow down. I practice patience. I knit a single round of a sock and then I rest. I practice patience. I write a few sentences of my next Substack and then I pause. I practice patience. I lie belly down with my face smashed to the pillow and my leg up to the side and I think, “Slow down, Hal” I breathe slower. I think slower. I smile and then I whisper, “now even slower... even slower.” I practice patience. I practice trust. I practice surrender.
In Letters to a Young Poet, Rilke says it so beautifully. He writes:
“Being an artist means, not reckoning and counting, but ripening like the tree which does not force its sap and stands confident in the storms of spring without the fear that after them may come no summer. It does come. But it comes only to the patient, who are there as though eternity lay before them, so unconcernedly still and wide. I learn it daily, learn it with pain to which I am grateful: patience is everything.”
Thanks so much for reading. It’s a been a joy producing this publication and I’m so glad that you’re a part of it. Enjoy living in that body of yours. See you next time. H
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. This Saturday, March 7th at 2:00 pm EST, I’m hosting a Zoom gathering to celebrate my March 5th birthday when I’ll be turning 60. You’re invited. Find details and a Zoom link below.
Please click the PLAY button above to hear the intended PODCAST version of this episode. Find the complete transcript below. Thanks for being here! ❤️ Hal
When: March 7, 2-3:30 pm EST. (notice time change from previous announcement) Where: Zoom Meeting: 870 0553 2132What: Open House followed by playing, “Friends are Human - a game that brings you closer to your friends.” Note: Stay for 5 minutes or stay the whole time.
Sugar Mountain
Guess what!? I’m turning 60 next week… and you’re invited. I’ll tell you about that later, but for now, I just want to settle into the reality of getting older.
It was 40 years ago that I turned 20. That was 1986. At the time, I was loving the Neil Young song, “Sugar Mountain.” The first time I ever heard Neil Young something changed in me. I’d grown up taking piano lessons and listening to Casey Kasem play top 40 music on the radio. But I went away to college and heard the sound of Neil Young playing the guitar and the harmonica at the same time and I thought, “That’s what I want to do.” I was blown away. I heard him play “Sugar Mountain” and that became my anthem for a little while. “You can’t be 20 on Sugar Mountain, though you’re thinking that you’re leaving there too soon.” It goes…
“Oh, to live on Sugar Mountain, with the Barkers and the colored balloons. You can’t be 20 on Sugar Mountain, though you’re thinking that you’re leaving there too soon. You’re leaving there too soon.” - Neil Young
I loved that song so much. It was my coming of age song. I was growing up, I left home for college, I was growing my hair long and I was coming into my own. The reality was that I was a history major at Northwestern and I didn’t want to be there. “Sugar Mountain” helped me tap into the kind of life that I wanted — a free life on the mountain with a guitar and a harmonica.
I wasn’t really cut out for academics. The liberal arts education was what my dad recommended, but I see now I was meant for being out on the Frisbee field, creating with my hands, crafting and making — playing music. I wasn’t cut out for reading history books in the library. I wanted to be free. I didn’t want to be locked to a desk with chains . I wanted to wear my hair long and have a girlfriend and wear hippie clothes… and be free.
Lately, I’ve been reading a diary that I wrote back in 1985, 41 years ago. It’s been a fascinating read, a glimpse into my 19 year old brain. I was so insecure and so critical of others — desperate for a girlfriend. My big aspiration was to live among the homeless. I just wanted to roam the streets of Chicago. I wanted to be free. I’m gonna read you a little bit of the diary. Here’s an excerpt.
“The last couple days have been incredible. Right now, I’m rather confused and I have a kind of sick feeling and I can’t wait to talk to dad to get his opinions. It all started by reading ‘Illusions’ by Richard Bach.
Last night, I was to the point of crying, saying, ‘I have to get out of here. I have to get on my bike and ride.’ I spent most of the crying time thinking what I would tell dad to convince him how confused and unhappy I am. I have friends and all, but I’m 18 years old and I will soon be 80 years old, and I have to do what I really want. At this point, what I really want is to learn how to ride my bike and throw a Frisbee.
I was to the point last night where I honestly didn’t think I would be here next quarter. As I look back, it sounds like a big excuse to not do homework. But it’s still true today. I don’t know what I should do. I think about taking all those s**t requirements.
This morning, I was convinced that I would transfer into the music department and really learn how to play the piano. That would be cool — riding a bike around the world, playing the piano.
Guess what? This is the next day, and I’m gonna drop out of school. Actually, I have to talk to dad first. But as of now, I’m a member of American Youth Hostels. I’m gonna dress real warm and head south, hitting all the hostels, reading a lot, practicing Hacky Sack, riding my bike a lot. You know… I’ll find a place to stay, then unpack, then train on my bike. I was studying Russian last night, and then I stopped and read “Illusions” and I convinced myself.
I’m thinking that maybe I’ll find out the standards for transferring to the music school, but I’d still have to go through all this st of being nervous about finishing things. If there were no grades, people would study when they want to study.** Some people wouldn’t study, but they would be happy. It’s impossible to not care about grades when there are grades. I can’t seem to have fun without thinking I should be doing something else. If I took a bike trip, I could do things like go into small town high schools and pick up an ultimate game. I could talk to people at hostels and I could sit back and read and write letters, making people think that I’m a great guy. I have to do it.
Tonight was calmer than two nights ago. That night, I almost got sick and I cried and screamed, “I have to get out of here.” I’m gonna ask Harold Walker III of the future a few questions now.
One — Did you take a break from school and take a bike trip? Two — Are you over the confusion of what to do with life yet? Three — Are you well educated? (not necessarily academically.) Four — Did you do the right thing? Five — Have you found something to really love and dedicate yourself to?
I have to get out of here. Today and yesterday, I convinced myself that I would transfer to theater, but tonight, as we prepare for the coffee house, I’ve discovered that I’m not an actor. My body is so big and uncoordinated. St! I can’t do anything. There’s nothing in my past worth remembering and unless I get out of here, I can’t foresee anything in the future. I’m so scared.
What should I do? Right now there’s nothing that I love to do but play ultimate… and I love Barb so bad, but I have nothing to say to her. Whenever we see each other, we part so abruptly without saying “goodbye.” On that bad night when I had to get out of here a week ago, I wanted so badly to talk to her and cry to her and have her comfort me. I got there and she wasn’t home and I went over to J.K. Sweets and there she was with her boyfriend. She looked so cold, and there was no way I could have said anything to her.
I can’t wait to take off on my bike, taking my time, having no rush to get anywhere. I’ll stop at Ohio Wesleyan and Ohio State and Miami U. And I’ll move on South and possibly stop by Granny and Grandad’s in Birmingham. But they would probably die knowing that I had dropped out of school and had long hair.
Oh s**t, I was just humiliated….”
Anyway, it goes on and on for many, many pages. 1985.
Well, Hal Walker of the past. It’s been a lot of life since then — 40 years as a matter of fact. You didn’t drop out of school, but you did go on the bike trips. You had a few girlfriends, you got married, you had a daughter named Hallie and you got divorced. And then two weeks ago, you started knitting. You’ve entered your knitting phase. Turning 60. Gettin’ started on knitting.
It’s been a good one. It’s been a good 40 years. I can’t wait for the next 40. I’m turning 60 next week. That gives me 40 more years to 100. I haven’t been listening to any music lately, so I don’t have a “coming of age song” for 60. I guess for me, it’s more of a coming of age activity — knitting. Yep… learning to knit.
My English girlfriend, Emma started knitting socks, and I said, “I want to learn to knit socks.” So we’re knitting socks together. I jumped right in and bought some yarn and bought some circular needles. I’m really enjoying it. I can’t believe it took me so long to get into knitting. I guess I had to slow down first to the pace of knitting. Of course, you know the way I roll. I’ve started with three knitting projects. I’m doing two pairs of socks and a hat. You know, my mom’s an artist and a knitter, and I realize, with all the art and knitting that I’ve been doing lately, she rubbed off on me more than I ever thought.
Hal of 1985… Yep, you found your thing — Islamic geometric patterns and knitting. And by the way, you got free. Yeah, you’re free, man. It took a while, but you got free. Just in time.
Birthday Zoom - You’re Invited.
So anyway, next week’s my birthday, and you’re invited. Here’s what I’m gonna do. Next Saturday afternoon, March 7, at 2:00 pm Eastern time, I’m hosting a Zoom and you’re invited. For the first half hour, it’s just an “Open House.” Stop in for 5 or 10 minutes just to say “Hi” and connect on Zoom with me and whoever shows up.
Then at 2:30 Eastern Time, for those of you that have the time to stay and want a deeper, more intimate connection, we’re going to play this game that I love called, “Friends are Human — a game that brings you closer to your friends.” And that’s what I want. That’s what I want on my birthday… is to be closer to my friends. And YOU are my friends and you’re invited. So we’ll gather and connect.
Let me just pull out one of the questions. It’s basically a deck full of questions. I will pick out my favorites and we’ll take turns answering them. There will be no pressure to speak. You can just listen. But if you want to make yourself vulnerable and share, you’ll have the opportunity to answer the questions.
For instance, “What’s a topic you wish you knew more about?” These are just random. “What parts of your life do you hope will be the same 10 years from now?” Nice. Here’s a deep one. “How has your understanding of love evolved as you’ve grown older.” And finally… (there’s 140 cards to choose from) Here’s one up my alley. “If you could learn any new skill instantly, what would it be?” And finally, “What’s something you’re passionate about that you don’t get to talk about very often.”
So we will have some time together on Zoom. Stay as long as you want or as short as you want. It’s my 60th birthday. Please, no gifts. Actually, my birthday is on March 5th and this event is on March 7th, but that’s okay.
Everyone, thanks so much. Thanks for being here. I hope you’ll come. I’ll leave the Zoom link above on this post and I hope to see you there. In the meantime, enjoy living in that body of yours. It’s not going to be around forever. I mean, we’ve only got 40 more years. We’ve only got 40 more years, and the last 40 went by so fast.
“You can’t be 20 on Sugar Mountain, though you’re thinking that you’re leaving there too soon… Now you say you’re leaving home ‘cause you want to be alone. Ain’t it funny how you feel when you’re finding out it’s real? Oh, to live on Sugar Mountain, with the Barkers and the colored balloons. You can’t be 20 on Sugar Mountain, though you’re thinking that you’re leaving there too soon, you’re leaving there too soon.” - Neil Young
Thanks for listening. I appreciate you. I’ll see you next time. Bye, Bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi! I’m Hal. Thank you for your patience. I’ve been moving pretty slow lately. I know it’s been a while since I’ve posted. I’m glad you’re here. Please tap the PLAY button above to hear the intended PODCAST version of this episode. Find the full transcription below. Enjoy.
Color Theory (Part One)
I’ve recently discovered color theory and I’m hooked. Have you heard about it? Complementary, monochromatic, analogous, split complementary, triadic, hue, value, tint, shade, tone — all the things of the color wheel. It’s called “color theory” and I love it.
I’ve always been drawn to the theory of things. I remember coming home after graduating from Northwestern as a history major and realizing that I wanted to be a musician. I figured maybe the right thing to do would be to go back to Kent State as a post-undergrad and get a degree in music education. So, in order to prepare for the music major, I bought this programmed textbook called “Scales, Intervals, Keys, Triads, Rhythm and Meter” and I ate it up — the theory behind music. Finally, after years of piano lessons, I learned all the key signatures and I learned how to analyze a piece of music. It was like coming home to a language that was mine but I’d never known before.
Due to the onset of ME/CFS in 1991, I didn’t finish that music education degree. But for the next two years, I was signed up for that 8 am music theory class with Dr. DeVore. Until I got sick, I used to ride my bike over to Kent State every morning from my mom’s house. I loved it.
In high school, I had three years with the best grammar teacher in Ohio, Mr. Pollock. I learned how to pull apart a sentence. Mr. Pollock taught us a system for writing an essay — the introduction, the three body paragraphs and the conclusion.
Well, if you know me, you’ll know that I love anything with a system. I love to follow directions. Give me some directions to follow and I’ll follow them. Even though I always thought I was a hippie and the rules didn’t really apply to me, I learned later in life that I love a system. Give me a structure and I’ll thrive inside of it.
I’m drawn to things that have a system. I love to learn the theory of things. And I guess that’s the s**t part about ME/CFS. There is no system. There’s no theory. It’s just a brutal illness with a mind of its own doing what it wants to do. Like my girlfriend Emma says, living with ME/CFS is like walking a tightrope and you’ve got a blindfold on and the tightrope is constantly moving and you have no idea how far of a drop it is to the floor.
2026 has started off rough for me with this illness. After a handful of months of significantly milder symptoms in 2025, since the beginning of the year, you might say I’ve fallen off the tightrope a few times. The falls have come in the form of these things we call “crashes” — catastrophic, sudden onsets of intense illness. They come out of the blue and then they last for days or weeks or months… possibly a lifetime.
That’s the thing. You never know. With ME/CFS, there is no theory. There’s no system. I guess like everybody else in this world, we live in the unknown. We’ve got a monster in our beds and we really never know when it’s gonna strike next.
For me, it struck hard this year. It’s been brutal. I’m mostly bed bound these days. I went from being mostly house bound to definitely house bound to mostly bed bound. For the second time, I had to cancel a trip to England, I’ve had to let go of most of the things I enjoy and I’ve had to spend many hours writhing in a bed. I got the numb-f**k in the brain, I got the deep weakness in the hands and the legs and I got that awful burning weakness in the core, always on the verge of a crash.
It means I’ve got to spend most of my time in quiet time — legs up, head back, looking for some good in the murky chaos of my inner world. Fortunately, I appreciate quiet time and I know there’s great benefit in the stillness and the quiet and the solitude. I’m spending most of every day alone, in the dark, with an eye mask on.
Truly, it’s remarkable what I’ve adapted to over the last four or five years. I mean, you should have seen me back in 2019 and 2020. I went non-stop. (lol) I never stopped. I ran constantly — constantly in the car, loading up, heading off somewhere, always making urgent plans trying to figure out how to keep building the Hal Walker Enterprise.
In many ways, I’ve let go of that enterprise. A very important person in my life has encouraged me to “practice being insignificant — one among many.” That speaks to me. For a guy like me, that’s a big deal. But I believe in it. I’m giving it a try. I appreciate being able to tell my story here on Substack. Thanks so much for being here.
During my better months last year, I set up my dining room table to be an art table. It’s still covered with art supplies today while I lay here in bed. But, as you may have learned in my last episode, I’ve become very interested in Islamic geometric patterns. This kind of art touches my brain in such a beautiful way. Back in 10th grade, I loved geometry… and then I forgot about it for about 40 or 50 years. But I love me some geometry. I love shapes. I love angles. I love circles. And I love tessellating patterns.
So I signed up for a couple online classes at the Global Islamic Art Academy led by Mohammed Al Janabi, who teaches a very systematic way of drawing these traditional patterns. He’s been doing it for about 70 years, I think. He learned it from his father. I’m learning to follow very precise instructions to create circles and stars and rosettes and kite shapes — coming together to form these gorgeous, intricate, traditional, repeating Islamic patterns.
So I was creating these patterns and filling the shapes with something called stippling — thousands and thousands of tiny dots. I was quite satisfied with the glassy panes of various shades of gray. Gray was enough for me. You know, I’ve never been a big color guy. When people ask me my favorite color, I say “shades of brown.” My wardrobe always tended toward brown and gray and maroon, all the neutral tones. All the walls in my house are shades of beige and brown… and yellowish. So when I’d show these patterns to Emma, with all the stippling, she’d say, “Hal those patterns are screaming for color. They’re dying for color. Put some color in there.” Her walls are turquoise and purple and pink.
In my explorations of Islamic art, I’ve found Instagram to be an amazing place for meeting wonderful artists doing beautiful work. One day, I was scrolling on the Islamic geometric art feed and I came across a single photo by an artist named Charlotte Dilly. It’s interesting to me how this humble photo jumped out at me as being something important. This was a technique that I needed to learn.
This artist had colored a pattern with colored pencil using a very beautiful gradient technique that I had never even imagined before. I mean, for me, colored pencils were just something to scribble with. I never imagined the beauty that they could create until I saw that photo. I was immediately drawn to it. I was like, “Oh my gosh, I didn’t know you could do that with colored pencils. I’ve never seen that kind of depth. I’ve never seen that kind of warmth. and subtlety.”
So I went to my direct messages, and I messaged Charlotte Dilley. I said, “What are those pencils? I need to know?” And she said, “they’re Faber Castell Polychromos pencils.” I learned that Polychromos pencils are an oil based pencil. They’re nice, but they’re not super special or anything. I mean they’re just colored pencils, but “Wow,” I thought. “I need to get me some of those.”
So I loaded my wheelchair up onto the rack in the back of my car and I drove over to the All Media store on the other side of Kent. All Media is an art store that’s been there for like, 50 years. It’s old school, locally owned and I remember going there as a kid. I encourage you to go spend some money there.
And guess what? At all media, you can buy individual Polychromos pencils for just about $2.50 a piece, they’ve got about a hundred colors to choose from. Amazing. So I sat there in my wheelchair and I picked out my first palette. I basically copied right off of Charlotte Dilley. Here’s what I got. I picked out the Polychromos Burnt Carmine (a nice deep red), Prussian blue (a real nice blue), Terracotta (kind of an orangish something), Chromium Green Opaque (kind of a seaweed green), then gold and warm gray no. VI.
Those six colors made up my first palette of Polychromos pencils, and I raced home to see what I could do with this special shading and gradient technique that I had seen in this single photo of Charlotte Dilley’s — dark and layered on the outside, fading into very light on the inside, giving it a real sense of depth and warmth. Right away, a whole new world of color opened up to me. It was so satisfying… and my girlfriend was so pleased. The photos that I sent her in WhatsApp were no longer gray. They were all kinds of beautiful color — polychromos.
I spent the next couple months with a compass and a straight edge and I followed that up with coloring. And every few days, I’d load up my wheelchair and head over to the All Media store to pick out a few more pencils. The manager got to know me there. I was the guy who showed up in the wheelchair and went straight to the colored pencils. Sometimes I’d spend a half hour picking out my colors.
So, up until that first dreadful crash of 2026, I was coloring. I was coloring, coloring, coloring and I’m gonna show you some samples here in this post. Compared to this eye mask I’ve been wearing for the last couple weeks, it was really a vibrant, colorful time. I’m grateful to be able to share some of it here with you today.
And this is just part one of “Color Theory.” Next time is going to be part two. (And we’ll actually be getting into some of the theory that I’m talking about.) But for now, I just gotta quit. My brain is completely toast — fried. And I’ve just got to stop. That’s one thing that I often don’t know how to do, is to stop when I’m on a roll. So I’m going to stop and we’re gonna make a part two next time.
Thank you so much for being here. I’m looking forward to telling you the rest of the color theory story. It’s very interesting. Thanks so much. I appreciate you sticking around, not losing hope. I know I haven’t posted for a long time. I’m really glad to be here. And I’m still going… still going. It hasn’t been easy. I look forward to seeing you. I look forward to seeing you in the springtime. Maybe we can all circle up and hold hands and sing a song together. That’s what we need.
It’s been quite a time in the world. I’ve been watching it here from my bed and I’m shaking my head a lot. Wish I could be out there doing more. I wish I could be out there doing more service. But here I am learning about color theory. All right, see you next time. Thank you so much.
Oh, by the way, remember, enjoy living in that body of yours today. It’s not gonna be around forever. Take advantage of what you got. Okay, have a good one. I love you. Bye. Bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Stippling
I’ve been stippling lately. I had to pull myself away from stippling to record this podcast today. In the last two days, I’ve started three new stippling projects. In the last couple months, I’ve stippled for many, many hours. Yep, I’m a stippler. I’ve entered my stippling phase.
If you don’t know what stippling is, I’ll tell you it’s using thousands and thousands of tiny black dots to create beauty. All the dots come together to give the illusion of smooth, glassy shades of gray. It requires precision, a steady hand, and tremendous patience. I discovered stippling several months ago, and now I’m a full fledged stippler — hours and hours of stippling, thousands and thousands of tiny dots. I keep asking myself, “Is it worth it?”
It started a couple months ago on Facebook when I came across the term “sacred geometry.” I thought, “Hm.” And I started exploring. What is this “sacred geometry?” When I was in high school, I loved geometry. I remember the circles. I remember the triangles. I have a vague recollection of loving the formulas. It’s all the distant past by now, but I just remember that I loved that class. And the idea that sacred geometry exists in art got me excited.
So I headed down the YouTube rabbit hole. The term sacred geometry led me to the world of mandalas. I bought myself a compass and a straight edge and I made a few of ‘em myself. And the world of mandalas led me to the world of Islamic geometric art, traditional patterns of repeating lines and tessellating shapes. And that has been my focus and my passion for a couple of months now.
I’m fascinated by the interaction of the shapes, the squares, the stars, the almond shape, the circles, the pentagons, the octagons and all the shapes in between. They all fit together to unfold a beautiful sacred geometry.
Many of the people who are doing Islamic geometric art are using watercolor to make their design come alive. They build the construction of the design with pencil and then add the color to make it pop. But I, on the other hand, am using “stippling” to bring life to the pattern. With stippling, I’m working with about five shades of gray when all these tiny black dots come together. It’s these glassy panes of gray that turn a complex geometric pattern into what I consider to be a living, breathing, ever changing kind of vibrant, brain=friendly, solving-a-puzzle piece of art.
As I construct these patterns and fill them with shades of gray, I’m finding great satisfaction and enjoyment. Very slowly, I’ve been filling up this beautiful “Seawhite” sketchbook with tiny black dots. And the whole time I’ve got this nagging question. Is the result good enough for the amount of time that I’m putting into this? Is it worth it?
Islamic art is brand new to me and I’m really excited. Next week, I’m going to be attending an all free, online “Islamic Art Week.” If you’re interested, you could join me. I can’t wait to see all the different flavors of design and calligraphy and geometry. These are ancient patterns, hundreds of years old, that were found on mosques and other architecture in the Middle East.
I wish I could say more. I’m just at the beginning of the journey, but from what I understand, in the mosques of Persia, which is Iran today, they weren’t allowed to display images of people. So instead, they displayed these geometrical patterns of shapes that intertwine and tessellate and repeat to form these amazingly complex, symmetrical and timeless works of art. I’m finding that these patterns touch my brain in such a beautiful and satisfying way. It’s like my brain has been craving this kind of geometrical activity. I love it so much. The 10th grader in me from geometry class comes alive with a compass and a straight edge.
The process is fascinating. I’m following very precise instructions, one step at a time, building a structure that underlies the design. It all begins with a circle and a square around that circle. Because of the tessellation, or the repeating nature of the design, I’m just creating one quarter of the finished pattern. I repeat that quarter of the pattern and the repetition causes all kinds of unexpected things to develop.
Using a hard pencil. I create the underlying construction of the pattern with geometry. Once the construction is made, the simple, beautiful, repeating pattern shows itself and I do the incredibly satisfying process of lining out that final pattern with a straight edge and a black fineliner. And then I use one of those gray putty erasers to erase all the pencil line. And then on the bright white, smooth cottony paper, this luscious, clear, logical and simple design is born. And I begin the process of stippling — filling in the shapes and making the design come alive.
I’ve become a much better stippler in the last couple months. When I started off, there was a kind of panic to it. I realized the kind of patience it was going to require and I didn’t have the patience. I wanted to go fast. But the truth about stippling is… it’s a very, very slow process, thousands of dots, one dot at a time. It takes hundreds and thousands of dots to make any progress on a piece. I felt like I needed to rush. In the rush, my stippling was messy. Many of the dots turned into dashes and left this unclean look to the stippling. But I’ve gotten better. I’m learning to be patient with my stippling.
Stippling is essentially a mindless activity, but it takes real precision and care. When I take my time with a stipple, it turns clean and glassy on the page. It feels like a fine film on the paper and it’s quite satisfying.
But it has brought up a lot of questions for me. It’s brought up these kind of existential questions, like, “Is it worth it?” As the minutes and the hours of tapping pass, questions come into my head and I wonder, “What am I doing this for?” Here I am filling these pages with thousands of dots, and I’m asking, “Is this the way I should be spending my life?”
But when I finish a section of stippling and I rub my hands smooth over that fine paper and I can feel the glassy film of the black ink, I see the beauty. I feel the satisfaction.
I’m gonna show you some of my work here, but I want to make clear, it doesn’t translate well on the screen. Trust me, you need your hands on the paper to get the full effect. I love to brush my hand over the fine softness of this high quality art paper. But I keep asking myself, “What’s the point? What’s the purpose? Is it worth it?” I mean, what am I doing this for? Who’s even going to see it?
You know, when I was making music, there was always an audience. But art is different. I mean, I could be posting on Instagram, looking for likes, looking for affirmation. And I can take a picture and send it to my mom. She loves to see what I’m making. Or maybe someday when I fill up the book, I can pass it on to my grandkids. They can keep it on a shelf somewhere in their future house. Whenever someone comes to visit my house, I always break out the sketchbook to show ‘em my stippling. I appreciate the way Annette pauses and lets each page kind of soak in.
But it brings up this whole question of, what is the purpose of art, especially this particular craft that takes so many hours to make it happen, and I’m not even certain that it’s great work. You know, I could be writing my memoirs or composing an orchestra or teaching a child or changing the world or writing a letter to an old friend or creating my next Substack. But instead, I’m sitting here tap, tap, tap, tapping, essentially coloring in these shapes with thousands of tiny dots.
It’s essentially glorified coloring. That’s what it is. It’s glorified coloring. And I don’t want to be a coloring book artist. Mind you, I’m not judging all the people that are out there coloring with coloring books. But I grew up in a household with an artist mom who didn’t really allow coloring books in the house. We had to make the books ourselves. And I guess that’s what I’m doing with the Islamic design. I’m following ancient geometrical instructions to create an outline and then coloring it in with stippling. I’m basically a glorified coloring book artist. (lol)
I’m not sure what the problem is, or if there is a problem. It’s a beautiful and satisfying process of art making that I’m taking part in. But I just don’t know what the purpose is. What is the purpose of art? That’s the question. That is my question. what is the purpose of art? What is the purpose of filling up this sketchbook?
I find it very peaceful. I love making these patterns. It’s such a fun and exciting process of unfolding. Maybe that’s enough. Maybe it’s enough just enjoying the process. I think that’s it. It’s about the process. Am I tapping these taps with intention and love? Am I bringing beauty into the world? Am I bringing peace into my life and spreading it to others? It could be that the final product and who sees it is really not that important… maybe.
So that’s basically the whole story. I’ve been stippling. I’m becoming a master stippler, one dot at a time, one little shape at a time. I’m creating beautiful glazes of gray.
You know, stippling fits my energy level quite well. As you know, I’m living with chronic illness. I can’t go out in the yard and tend the garden or rake the leaves or clean the garage. I’m not well enough to go on a bike ride or a walk. And often, I’m just not well enough to use my creative juices for much of anything. But I can handle stippling sitting up in that chair with a pad under my butt, tapping that pen over and over.
You know, another word for stippling is pointillism. I haven’t really warmed up to that term. It feels a little bit above my pay grade. I’m doing stippling, thousands of tiny dots on paper, satisfying my brains craving for the gray scale… and wondering what the purpose is.
Please! Come over to my house. Ask to see my sketchbook. Give my life some purpose. I’m dying to show it to people. I want you to rub your hands over it. I want you to feel the smoothness of the paper, this fine paper. And I’ll leave some pictures here, but trust me. They don’t, they don’t live up to the real beauty of the page.
So, I’ve started three new stippling projects in the last few days. Beginning a project is like, Oh, my God, there are many, many hours of patient stippling ahead. At the beginning, it can feel a bit overwhelming. But, filling in just one shape at a time, eventually the work gets done.
You know, sometimes it occurs to me, I could be hiring child labor to do this work. Hire some kids five bucks an hour to stipple for me. (lol) I don’t know if that’s legal or not, but it does occur to me. It’s like, what am I doing? A 59 year old man, highly intelligent, very creative man sitting here poking dots over and over. I could have kids doing this. I’m just kidding about that, but it is. It’s mindless work. It’s mindless work that this 59 year old man is quite enjoying in his retirement.
But I do get to experience the satisfaction, I mean, when the whole piece is done, and my eyes get to gaze out over that field of gray, that smooth, glassy, kind of film of gray, I can just sit there and gaze at the real beauty with a good sense of satisfaction. It makes it all worth it, all that repetition, all that mind numbing labor.
Let me tell you one more story. When I was in college, I worked at the Noyes Cultural Arts Center, and I was an office assistant. I was terrible. I would show up with my long hair, unshaven, messy clothes, holes in my clothes, stinking like a hippie. For three years, I worked at the Noyes Cultural Arts Center with Toni Sinclair, and my favorite thing was to go across the street and get Toni her donuts and coffee. And I’d bring it back and we’d all sit at our own desks and I’d eat my donut and my coffee.
But what I loved is when she would give me a mindless job. Like, “Here Hal, here’s 1000 envelopes to address, to put the sticker on,” or “here’s 1000 envelopes to seal.” I love that kind of repetitive, mindless work. I was so grateful when she’d give me a job like that. I could just lose myself in the repetition of the task. Unlike my co-worker, who would come up with projects on her own and make good things happen in the office, I just sat there… waiting for my shift to be over. I did not like office work. I wasn’t cut out for it, but whenever I was given a mindless job, I could do it. I could do it for hours.
And that’s kind of what stippling is. It’s this mindless, meditative, mildly maddening, very peaceful, very quiet. I don’t listen to music, I don’t listen to a book. I just sit there, dot after dot after dot after dot — thousands of dots and I stipple.
That’s my whole story for today. Thanks for listening.
So if you wonder where I’ve been lately, I haven’t been writing for Substack. I’ve been stippling and I hope someday that I get to have a… you know, maybe I’ll have a show someday. Maybe someday I’ll frame some of these and have a show. Maybe I’ll be a famous stippler. Who knows.
But tell me, what is the purpose of art? I’m really interested. Besides filling up this sketchbook and putting it on the shelf somewhere and passing it on to my grandchildren and teaching them Islamic geometric art and stippling. Tell me. Tell me. What’s the purpose? What’s the purpose for creating beauty, other than enjoyment, my own enjoyment. Maybe that’s enough. So that’s my big existential question for the day. What’s the purpose of art? What’s the purpose of stippling? Thanks so much for listening. I really appreciate you being here.
All right, I’m gonna go stipple some more. Hey, by the way, if you woke up this morning, enjoy. Enjoy that body. Enjoy that sacred body. Not everyone gets to have one today. I know several people that don’t — that body that is such a miracle with five senses inside and all those organs that are working, you know, all the things that had to go right for us to be alive today, it’s a miracle. Thank you.
Come visit me sometime. Put your hands on my stippling. All right, everybody, have a great day. Bye. Bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
The weather changed today and it’s cold inside. I’ve been walking around the house with a T-shirt on tonight and I’m freezing. I haven’t gotten my fall clothes out yet. I haven’t been ready to make that transition.
It’s been summer in Ohio for the last couple weeks and I’ve been loving it. All the windows have been open and… I wish it would never end. It’s been blue skies with temperatures in the 70’s and the 80’s. I’ve been wearing my linen pants and a T-shirt and I’ve been staying up late with the windows open, making art. I love it. I’ve been drawing Islamic geometric patterns. That’s my latest thing, but I’ll tell you about that another time.
But today feels like the first day of a new season. I feel a little bit cold to the bone. It’s the middle of October and it’s definitely turning autumn. And I can’t say that I’m ready. To be honest, I’m a little scared. I mean, after autumn comes winter, right? Summer’s much easier. Yep, of all the seasons, summer is definitely the easy season.
But I’m not here to talk about the weather. It’s been an interesting week in the world and in my life, it’s amazing how much can change in a week. In the last seven days, three people who have played important roles in my life have died.
In each case, I found out about it on Facebook and in each case, I realize that I didn’t get the opportunity to adequately let them know how much they meant to me, how much I cared about them. I didn’t get to let them know how important they were in my life.
So I’m taking this opportunity now to speak out these names and just give a little glimpse into the lives of three really remarkable and wonderful people who are no longer walking the earth. It’s definitely been a reminder to me that it’s never too soon to tell the people I care about how much I care.
I love you, mom. I love living in the same town with you and I really enjoyed our date last week to the Standing Rock Cultural Arts Center. We should do it again. ❤️
It was last Friday that I learned that Dr. Terry Miller died. I think it was a sudden death, unexpected by his family.
What a great guy. Dr. Terry Miller, an ethno-musicologist from Kent State University. He was the man that introduced me to the melodious khaen, the grandmother of the harmonica from Southeast Asia. Terry Miller was the preeminent scholar on the khaen and all music from Northeast Thailand, from the Isan territory of Thailand. I don’t know all the details, but I think he started studying and traveling to remote villages in Northeast Thailand back in the 60’s. Long before running water and electricity, Dr Terry Miller was listening to “morlam” music in remote villages outside of Roi Et.
He wrote just about the only book that exists on how to play the khaen. I think it was he that started the ethno-musicology department at Kent State. And somehow I ended up living in the same town as Dr. Terry Miller. I’d say that because of Terry Miller, Kent, Ohio has been a Global Center for world music, and specifically music of Northeast Thailand and the khaen. And this is my hometown. How lucky am I.
Back about 25 years ago, I visited his house one day, as a friend of mine was house sitting for the Miller’s, and over in the corner was a four foot bamboo mouth organ. I learned it was called the khaen and it was just sitting there ready to be played. I blew some harmonica rhythms into that mouth organ and my life’s never been the same ever since.
In 2007, I traveled to Thailand with Dr. Miller and his wife Sara. Every year they would spend several months in Thailand. In 2007, I bought a plane ticket with a stop in Seoul, Korea, and found myself at the Miller’s house in Bangkok. Then I spent about two weeks traveling around Thailand with Dr. Miller and his wife — all the while looking for places where I could lie down, because I was living with a fairly mild version of ME/CFS at the time. I didn’t tell anybody, though.
Dr Miller escorted me to remote villages in Northeast Thailand in search of the makers of the khaen. He was personal friends with all of ‘em. I met the makers and bought a few khaens and brought them back to Ohio. It was a wonderful trip. I’ll never forget it.
Terry Miller was so kind and generous to me. You know, I’ve always been kind of a socially anxious guy and I was just a little bit intimidated by his academic stature. He was very smart and he knew a lot about a lot of things. I was just a pot smoking folk singer from Kent that wanted to learn how to play the khaen. But he always surprised me with his kindness. He really seemed to take an interest in me.
On my last night in Bangkok, I woke up in the middle of the night very ill with a terrible flare up of some devastating, mysterious illness. I came back to Terry’s house and he took me to the hospital. As my host, he was very concerned. I was very sick. But, I made it back to Ohio and, uh, got sober and eventually, 20 years later, I became a world famous khaen player on Tiktok.
But for the last 20 years, Dr Miller’s been visiting Thailand every year studying covered bridges. I think that was his latest passion. But I’m sorry to say he’s gone now and I won’t get the opportunity to tell him how thankful I am for all his good work and all his generosity toward me. Thank you, Terry.
Then on Sunday, I learned that Peter Amidon died. Another great man, another great musician, a music educator and a big influence on my teaching.
Probably about 25 years ago, I bought these two song books for children called “Down in the Valley” and “Jump Jim Joe,” compiled by Peter Amidon and his wife, Mary Alice. And these books were full of singing games and dances for children, and I learned them, and I incorporated them into my life as a music educator. And I brought these songs into my family life. Hallie grew up with songs like Green Sally Up and Grandma Moses and Jump Jim Joe and all these wonderful songs that Peter Amidon introduced me to.
There’s one song called Grandma Moses. It goes like this,
Grandma Moses, sick in bed. She went to the doctor. The doctor said, “Grandma, Grandma, you ain’t sick. All you need is a peppermint stick.” Hands up, shake, shake, shake, shake, hands down, shake, shake, shake, shake, roll around, shake, shake, shake, get out of town. Shake, shake, shake, freeze.
I taught that song with motions to 1000’s of students all around the state of Ohio — all thanks to Peter Amidon and his songbooks. Thanks Peter.
And then, as a choir director at the Unitarian Universalist church, I was always looking for good choral material and Peter Amidon compiled these beautiful choral arrangements— perfect for my choir. It was called “55 Anthems for the Small Church Choir” and then another one called “25 Anthems for Interfaith and Community Choirs.” These books were so jam packed with good stuff. I bought a set of each of ‘em for my choir and we used it week after week. It was such a great resource — beautiful songs, beautiful arrangements with beautifully simple piano accompaniments. What a great find for a choir director like me — so satisfyingly folky, while being incredibly high quality, as well. Peter Amidon’s arrangements had such a simple beauty to them.
In 2016 when I put out my album, Life Wonderful. I was looking for famous people to give quotes about the album, so I sent one of my CDs to Peter Amidon, and he listened to it and I got a response. He said, “Hal, I so appreciate your talent. Keep going, but this is not my style of music, so I’m not going to give you a quote.”
That was a little bit uncomfortable and humbling, but I had so much respect for that guy. Peter and his wife Mary Alice actually performed for my benefit concert back in 2021 when I was in the depths of illness. I so appreciate them. I’ll leave a link for the video of them right here. You can check it out now.
Peter and Mary Alice were the heads of a traditional music family. I think the Amidon family used to perform together. I never got to meet him in person, and I don’t know that we ever even spoke on the phone. Maybe we did, I can’t remember, but I’m so thankful for the songbooks that came into my life.
Rest easy. Peter Amidon, thank you for all you’ve given us.
And then on Monday, I learned that Debra Lynn Hook died. Yep, my old friend, Debra-Lynn. Debra-Lynn and I were buds. She was just a person in town that I really liked. I really had great admiration for her. She was unique and opinionated and had a strong sense of herself. She was a spiritual seeker and I always appreciated that about her.
I think she’s from New Orleans and had kind of a really easy North Carolina accent. I don’t really know her whole background. All I know is I liked her and I used to love it when she came to church. She’d come to church sometimes, sometimes she’d sing in my choir and and I just always appreciated it when she was there, I felt she brought a level of honesty and intelligence to the church that I really appreciated.
And she was a great photographer. Again, when my album “Life Wonderful” came out, I hired Debra-Lynn for a photo shoot. She took some beautiful pictures and I’ll never forget it. That was a wonderful afternoon. Me and Andy and Kathy, my trio went out to Beckwith’s tree orchard, and Debra Lynn did an awesome photo shoot. Those were the days — 2016. It’s getting to be a long time ago now.
And Debra-Lynn’s been battling leukemia for many years. She lived a very full life for all those years, but for the last few years, while I’ve been battling ME/CFS, she’s been home battling leukemia. And I know it got really rough. I’m sorry I never took the time to stop by and let her know that I care, but I was busy with my own battles, like we all are, I guess. But I do care, Debra-Lynn. I miss you and I’m sorry I didn’t get to give you an adequate farewell.
But her family lives on. She’s got three beautiful grown children that are in Kent now building their own families. A whole new generation of little children will take over. I guess it’s nice the way that works. The torch just keeps getting passed.
My friend Emma was just reminding me that we think we got all the time in the world, but we don’t. In fact, “every moment is a gift,” she says. And it’s true, what a gift to be alive. The time to let the people you love know you love them is today. So I’m going to leave you with this. I’m grateful for you and I care for you and I hope I get to say it face to face before it’s too late. I’ve learned my lesson too many times.
So let these memories not be forgotten. Dr. Terry Miller and Peter Amidon and Debra-Lynn Hook, three people who really played a significant role in my life, and I’m sorry they’re gone, all in the course of one week.
Sending blessings to all of you. Thanks for listening. Remember… you may think you have all the time in the world, but this is the day. This is the day to celebrate being alive. What a gift it is to be alive, but it’s not going to be here forever, so take advantage of it today.
Well, I’ll be back next time. Thank you so much for listening. Enjoy living in that body of yours. Breathe Easy, everybody. Sending my love. Alright. Bye Bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
There's a Quaker phrase that says, “the way opens.” I love that phrase. The way. The way will open. It's a beautiful idea, this idea of “the way.” Just watch what happens. What will be, will be. Que será, será… and “the way” will open. Yep, my job is just to be available, be present, to be present for the way to open.
One interesting thing about this illness that I live with, ME/CFS, myalgic encephalomyelitis, also known as chronic fatigue syndrome. One of the main characteristics of this illness is how many doors it closes, how many things it takes away. With ME/CFS, most of the time, the way does not open.
But in my thinking today, the way always opens. You know, It's not my way. My way doesn't always open, but “the way” opens. The way opens and we eventually all die and the way keeps opening. I love that idea, “the way opens.” I like thinking about God that way. God is the way — the way, the path, the unfolding. The way opens. I see the way opening for me all over the place. It just keeps opening. I keep waking up and the way keeps opening. (lol) The way opens… yes.
But one big way it didn't open is on my trip to England. In case you were wondering, I'm not in England right now. Nope. For a variety of reasons, I wasn't able to get on the flight on Sunday night for my lie down seat to London to meet my long distance partner, Emma for the very first time. In fact, today marks our one year anniversary of meeting on Substack. Yeah, we're a Substack couple, a long distance Substack couple. We met on Substack one year ago, exactly.
In fact, maybe I'll even post the message that we sent to each other. I said, this was on September 18, 2024, just so you know, Emma lives with the same illness that I have, ME/CFS, and she's mostly housebound, living in Warwickshire County, England. I said, “Emma, thanks so much for subscribing and commenting. I'd love to hear more of your story. I'm so interested in connecting with people that are taking a spiritual approach to this illness. I’m having a really rough day and a rough week, and it's hard to see any other side of this thing. All the best. No pressure to respond. Hal” And on the very next day, Emma responded, “Good morning. Hal, I'm so glad that you reached out in messages. I felt I wanted to connect with you this way too.” Her message closes like this. “There is another way. Have faith that your journey has purpose and meaning beyond what your mind is telling you. Em.” There it is — the way. “Have faith that your journey has purpose beyond what your mind is telling you.” That's everything I needed to know to know that I liked this person and I wanted to know more. We've been talking practically every day ever since — on FaceTime, Zoom and WhatsApp, mainly — getting to know each other long distance, with an ocean between us.
Anyway, this was our one-year anniversary today of having met and I'm supposed to be in England, but I'm not there. The way didn't open. I'm still here in Ohio on South Chestnut Street. I guess a different way opened, because the way always opens. I can't wait to see what happens next. So I'm gonna tell you a little bit of a story of how the way didn't open, and my significant role in that kerfuffle of the way not opening.
I bought a ticket several months ago to England. I bought the super expensive lie down ticket, the overnight flight from Pittsburgh to London — non-stop, lie down, super expensive, non refundable. And I invited my good friend Annette to be my traveling companion. And the vision began.
It was a beautiful vision. It was a dream. It was a fantastical journey in my mind, in all our minds — Emma, me, Annette, all my friends that I told about it. We were counting the days and the weeks until the trip. We couldn't wait. We were gonna be staying in this really cool Airbnb in rural Warwickshire County called “the Pig Barn,” a converted pig barn, which was now a super nice cottage. And I bought a special puzzle and I bought a couple games and I bought a couple real nice, sweet, new outfits, British-inspired. I was looking good to meet my young, English, super hot, 45 year old, long distance girlfriend — for the first time. I was feeling fresh and I was having some better days, a whole bunch of ‘em.
Against all odds, this trip really seemed like it was gonna happen. Coming from 2024, the year of crashes, the year of decline, the year of needing a caregiver, being mostly bed bound. I sort of leveled out this summer and it seemed like traveling was a real possibility. I couldn't wait to sit in the same room with Emma and see what it was like.
The dream was unfolding. We were just three weeks away. We went from counting the weeks to counting the days. Finally, after a whole year, Emma and I were gonna be able to spend some time getting to know each other in person, face to face, the real human stuff, no more screens, real bodies, real touch, real sight. The way was opening.
And then… you see, all along I had this passport ID. It was a passport card. My passport booklet was expired, but I had this card in my wallet and it said “passport card” and it didn't expire until 2027. And I kept looking at that passport card and saying, “you know, Hal, you should check into this. You should make sure this card is okay.” But it didn't ever occur to me that it might not be. I mean, it says in big letters on the thing, “Passport Card.” That's got to be a passport. It's got to be what I need. The thought I was having was “passport cards are the new way. They don't use passport books anymore. Now it's just passport cards. This is the new generation.” But I procrastinated looking into this. I kept looking at that card, thinking, “you know, Hal, you should look into this.” But I didn't. I'm really embarrassed to admit this. I'm so humbled.
Well, just a few weeks ago, just about three weeks before the trip, I applied for my ETA, my “electronic transit authorization” to enter England and they would not accept the picture of my passport card. And I started getting frustrated. Over and over, I was sending a perfectly focused picture of my card. So I thought maybe I need a scan. But my scanner is broken, so I went all over town looking for a scanner, somebody to scan this passport card. I finally got a scan, but the scan didn't work either. Then I started getting real nervous. Anyway… they kept not accepting it.
And then, I told Emma about it. She said, “Hal, you need a passport booklet.” I said, “What? I need a passport booklet?” “Yeah, you need a passport booklet to get into England. You can't do it with a passport card.” And I was like, “Oh, st.” So right away I started freaking out, looking into how I was gonna get a passport in the next three weeks. And pretty quickly, I found out the only way to get a passport in the next three weeks is to do the urgent passport process. It's possible, but there's a lot of uncertainty involved.
It means, within two weeks of your trip, you gotta call the passport hotline in hopes of getting an appointment that week. Then you gotta travel to the nearest passport office in Detroit, Michigan, in hopes that they'll be able to give you a passport on that day. Believe me, I know the whole process. I know all about it. (lol) I learned everything. I learned everything… and the way still didn't open.
So that Tuesday morning after Labor Day, I called the passport hotline. I got myself an appointment for Friday. I was going to have Cameron drive me up to Detroit, and I was hopefully going to be getting myself a passport. And then, guess what happened next?
It was Tuesday night and I started having symptoms in my body that felt like a crash coming on. I can't even describe it. I don't know what to say about it. It's just a weird, adrenaline, wired feeling — this scary feeling like some poison is poured into my body. And I couldn't sleep all night. And I woke up on Wednesday morning, very ill, bed bound, breathing heavy, heart palpitating, heart racing, all kinds of crazy symptoms — scary, crazy symptoms. And I had two days until I was supposed to travel to Detroit.
Now that doesn't sound like a very big deal, but when you're having the symptoms I was, just leaving the bed, just going downstairs to the kitchen is a big deal. I was in a full-fledged crash and I had no idea how long it was gonna last. And my mind starts taking over. “Oh, st, this is my new normal.” I start getting filled with fear, like, “What did I do? What did I do to make this happen? And is this going to be my new normal? Am I ever going to get back to the way it was? How did I overdo it? What's taken over my body?”
And I knew if I didn't make that trip to the passport office in Detroit, I wasn't going to England. And I think it was that Thursday night, I made the decision. I called Annette, and I said, “Annette, I can't do it. I can't get to Detroit tomorrow.” And the dream came to an end. We pulled the plug and we canceled the trip. Then over the weekend, I started feeling a little better, and I was like, “Oh st, I was feeling better.” And I was like, I canceled the trip, Annette forfeited her ticket. I canceled the Airbnb. But then I started questioning it. I was thinking, “maybe if the way opens, I can still go on this trip, even though Annette’s not going, even though I still don't have a passport, even though I don't have the Airbnb, I still have a plane ticket on Sunday night, and maybe the way will open.”
So on that Monday morning, one week before the trip, once again, I called the passport office and made another appointment for Detroit. Yep, made another appointment for Detroit — that Thursday, three days before the flight, I was gonna travel to Detroit and hopefully get myself a passport. I was just gonna see if “the way” opened. So the story goes on, checking to see if “the way” opens. And as you can see, the way did not open. I'm still in Ohio. Thanks to a doctor's note, I have one year to use the credit with British Air. So let's hope within the next year, the way opens.
Of course, we know the way will open. We just don't know what way. Hopefully it'll be my way, the way I want. Yeah, I want MY way to open.
So that's the whole story, everybody. I'm tired. I gotta wrap it up. That's the gist of the story. The gist is “the way” did not open. But the fact is, “the way” always opens. You know, what's going to happen next? I can't wait to see.
I spent this week drawing. I spent this week getting into sacred geometry. I bought myself a drawing compass and a straight edge. I've turned my dining room table into an art studio. And I took a little picture of it before cleaning up. It's a mess. I've been spending my days surrounded with watercolors and colored pencils and water soluble crayons. Yep, the way keeps opening in unexpected ways. I mean, two weeks ago, I'd never even heard of sacred geometry. Now I'm obsessed. That's all I want to do. I’m looking forward to sharing more of that with you.
The way keeps opening. You know, keep an eye out. How is the way opening for you in unexpected ways. That's what I want — to keep an eye out. Like, here's the way. The way is now. The way is opening. Can't wait to see how it opens next. You know, when one door closes, another one opens.
But all that aside, it was a huge disappointment losing this trip. I had so many pictures of the way it was gonna be. Yep, the way it was gonna be, but the way didn't open. I'm really humbled and embarrassed about this whole passport debacle. It didn't need to be that way. I'm very sorry to Emma and to Annette and Emma's mom and everyone that was so excited for this trip to happen. Everyone's hopes were so high. So I'm doing the normal process of getting a passport now so I can be ready for the trip when it happens.
The way opens.
All right, that's it. That's it. I'm wrapping it up. Hey, thanks so much. Thanks for listening. Thanks for paying attention. Hey! Enjoy living in that body of yours. It's not gonna be around forever. Take advantage of it today. Do what you can, breathe. Breathe, love, feel. Take care of yourself, all right? Thank you. Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi! Thanks for being here. Please press the PLAY button above to hear the intended podcast version of this episode. Find the full transcription below.
A Sketch Book and Two Fountain Pens
Last night I was at the Spectrum store getting my phone activated and getting my mom's phone activated. After many years of being with Consumer Cellular, Spectrum was willing to give me a package deal on internet and phone and I made the switch.
So it was a full day of cell phones and internet providers and operators helping me with the whole process. But I got to the Spectrum store and I had a really great guy helping me out. He was so energetic and so helpful. He just wanted to help. It was so great to be in contact with another human who was smart and knew what he was talking about and wanted to help.
So at some point, he let me know that I'd have to wait a little while because the activation was taking longer than he expected. And fortunately, I had brought my sketchbook with me. Yep, I have a new hobby. I’m a guy with a sketchbook. 59 years old and I finally realized the joy of having a sketchbook. I carry it with me wherever I go - a sketchbook and two fountain pens. Kind of like my mom did back in the day. She's a master sketcher and she always had a sketchbook with her. Wherever we'd go on vacation, my mom would go off and sketch. I, on the other hand, was never particularly interested in sketching or sketchbooks. That was my mom’s thing. I’m a musician and I always believed that I didn’t know how to draw. But lately, I'm putting the pen on the paper, taking the risk to do it imperfectly and I’ve started to draw. And sometimes I even add some watercolors.
I've got a Stillman and Birn Delta Series sketchbook with nice, thick watercolor paper and I found this cool pencil holder that straps on. I don’t use it for pencils though. I use it for my two fountain pens. And they both fit in this little orange pen holder that I found in a store in downtown Kent.
A couple Saturdays ago, I was just roaming around on my scooter and I was well enough to say, “you know, I'm gonna walk into this little stationery store and see what they got.” And more and more, I love paper stores. I love stationery stores. I love fountain pens and different kinds of paper and paintbrushes and watercolors. I went in there just to see what they had and within about two minutes, I found the perfect thing to buy. Within five minutes, I was back on my scooter with a new pencil holder. It’s got this elastic strap that straps right onto your sketchbook, so wherever I take my sketchbook, I’ve always got my two fountain pens there. They don’t get lost and they’re ready for me whenever I need ‘em.
So anyway, I was at the Spectrum store and I was in my wheelchair and I had some time to wait. So I just found myself a comfortable spot right off to the side of the store with this little corner scene of a table and two chairs that I decided I would draw.
That's the beauty of a sketchbook. When I'm moving around the house or moving around town, I'm always on the lookout for something I might like to draw. And I got my sketchbook right there with me and two fountain pens, one fine and one ultra extra fine — kind of like my girlfriend, Emma. She's ultra extra fine.
So there I was sitting in the Spectrum store, a white table and these two kind of modern chairs, and I said, “Okay, here we go.” You know, there's always a little bit of anxiety that goes with starting a new page on the sketchbook, ‘cause what if I mess up. What if I ruin a page? I don't have a sense that I'm going to ruin the page and it really doesn't matter if I ruin the page, but there's just that little bit of fear. What if something goes wrong? I’m working with ink. I’m working with a pen. It’s not a pencil where I can erase if I make a mistake. Every mark that I make stays on the page.
But I just jumped right in. I started with the table top. Within a couple marks, I knew I had made the perspective wrong, but I just kept going. I didn't stop. I didn't give up. So for the next half hour or 40 minutes, while I was waiting in the Spectrum store, I was focused and at peace. I was fully in the moment. It was nice comfortable air-conditioning. I had the comfortable seat of my wheelchair. No one was paying any attention to me. I was just there focused on my little corner scene. I was so content. It was quiet in there and I just sat and drew — for about 30 minutes, probably.
Drawing is such an interesting process. I mean, I'm really a beginner. I don't know how to draw. But I take the risk and I start. I face the fear of the empty page and I go for it and I keep getting surprised by the results. Little by little, one mark at a time, it becomes something, and it's so satisfying to watch it become something, even though sometimes it's frustrating and scary and I make wrong moves. It's so satisfying and often so surprising. And it doesn't take long for something to happen. Pretty quickly, I had myself a little piece of art there in my hands. And I felt a smile in my heart.
Right when I had finished the scene, I looked down at my phone and the activation was complete. So I rolled over and told my helpful Spectrum guy. And we were both in just such a good mood. He was so pleased that I was happy, and I showed him my picture. He said, “Wow, that's great!” And I said, “Oh, it's not that great.” He said, “Believe me, I've never seen anyone walk in here and do that before.” So I was quite happy. I love having a sketchbook.
And then on the way out, as I was passing by this woman, she said, “you need any help?” And I said, “Yeah, sure, you can open that door for me?” And she opened the door for me, and I rolled right out of there to my car and put the wheelchair up on the back rack. It was just a beautiful outing. You know, I don't take outings for granted anymore, having spent so much time in bed, so much housebound time.
Late summer in Ohio. It was great to be out among people and I was met with so much kindness. And having my sketchbook along made all the difference in the world. I recommend it. If you’re thinking about getting a sketchbook. Go for it!
This phase in my journey of making art began about a year and a half ago. My mom brought over some water colors and I started throwing some paint onto the paper. I was just free and loose making these cards that I was sending in the mail. I love the easy clean up of water coloring. I had it all set up by my bed with some brushes and some water and some water colors. For a minute there stuck in bed, I was just free and easy — learning a whole new craft from scratch.
Then I bought an online course. And in the online course, the first lesson was all the supplies you need and I went and bought all the supplies. And guess what happened next? Yep, I stopped water coloring. (lol) I bought all the supplies and then I stopped water coloring for about six months. I lost that free and easy feeling of the beginning and I started trying to learn everything there was to learn and I got overwhelmed and gave it up. So I paused for about six or eight months, but eventually broke out the watercolors again.
And one day I was water coloring and I realized “I need to learn how to draw.” In order to watercolor, I need to be able to draw something — and I'm terrible at drawing. At least that was I was telling myself. Truly, I had this story in my head that goes back many years that I don't know how to draw. I can't draw. Me and my dad, we’re both bad at drawing. I do have these little stick figure people that I make and I'm okay at doing a little bit of lettering, but I have no clue how to look at something and draw it on a piece of paper.
So at first I got interested in pencil drawing and I bought all the pencils. I got the 2h and the HB and the 2B and the 4B and the 6B and the 8B. I got all the H's and all the B's. I learned what H and B means and I started learning how to shade. And I couldn't believe it. I was making these spheres, these shaded spheres, and I was making these real life drawings using shading with pencil. I was so surprised at what was possible as a beginner. And I couldn't believe I'd gone my whole life without doing this.
And then one day I was on YouTube and I saw this guy doing loose sketching with a fountain pen and then adding watercolor on top of the black ink. And I realized "That's what I want to do!” And that's what I've been doing. Moving around the house — drawing different scenes on the porch and the house. It’s scary every time, but once I get started it just brings me into the moment in such a beautiful way.
I feel like I'm starting a whole new dimension in my life. I've got my dining room table set up right now like a little art studio. I'm so grateful. I'm out of bed several times a day down there at the dining room table or on the front porch making art with ink, fountain pen and some watercolors.
Yeah, I've been wanting to share this with you for a while, so thanks so much for listening. It's been a really exciting process. I’ll tell you about these little five minute rectangles of art that I’ve been making — quick squares of creativity. I start with a light wash of watercolor and I then I draw some ink on top, and then another layer of watercolor. If I'm not feeling inspired, if I'm not interested in getting into a big project, I just make one of these little five minute rectangles. It’s a very small commitment of time and it helps break through the wall of my perfectionism. It satisfies that urge to create. Making these little rectangles of art makes me feel like I’ve done something worthwhile. I'll show you a few of them here.
With the upcoming release of Elanor Nadorff’s documentary about me called “Living in a Body,” lately I’ve been comparing my life of two years ago to the way it is today. I was in a very different phase two years ago. I was in the middle of declining health, experiencing overwhelming grief about the loss of my career. I was just having a lot of agony about all that I was losing. Since then, I've really settled in. I've settled into the reality of my life. I'm grateful to say I'm in a bit of an upswing right now. Healthwise, I'm doing a little bit better. I'm not having those life altering, terrifying crashes…
And I've discovered art! I've discovered this new passion that I have of drawing — drawing with a sketch book and a fountain pen. I'm a total beginner. I'm at the very beginning of this journey and there’s no guarantee I’ll still be doing it in six months, but I hope so! For now, I'm really grateful to have discovered a new passion.
I'd love to be part of a sketching community. You know, we could all meet downtown in Kent and find a different scene to draw. And then afterwards we could share what we did. Doesn’t that sound wonderful? If you're interested in that, stop by my front porch and let me know.
All right, everyone, that's it. Episode 114. Hey, remember, you live in a body. It's a beautiful thing. But It's not going to be around forever. It’s just a glimpse in time. Go take advantage of it today. Step outside for a minute. Take a deep breath. Stretch out. Stretch out in that bed. Do whatever you got to do. Take this moment to be quiet. Take this moment to appreciate. Take this moment to look around and see the good, see all the good that's surrounding you — even in your difficult circumstances, whatever they are. That's what I'm gonna do.
All right. Thank you. Thanks for listening, thanks for being here. I appreciate you and I'll see you next time. Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Better Day
Hi. Remember me. It's your friend, Hal. This is the “Living in a Body” podcast. Here we are. It's the middle of summer. The fans have been going non-stop for weeks. The windows are open. I got practically no clothes on. Yep… you know me. I loooooove summer. And I'm just here to check in, just for a quick hello and “how-de-do.” Sending love to all you my beautiful readers. Thanks for being here.
I want to let you know that I've been feeling just a little bit better, and it makes a big difference. After practically a whole year of decline, hitting some of my lowest lows, imagining that my life was coming to an end, I'm feeling a little better.
This morning, I was driving up to my 12-step meeting. Yep, that's a big deal. I was driving. Yep, it's true. Me in a car on I-480 heading up to Solon to be among the living — with my electric wheelchair securely hanging on the back— out of my bed, out of my house, in a car, on my own, with the windows wide open on the highway. Like the good old days, heading through Streetsboro, past Giant Eagle, past Home Depot, past the turnpike. It's amazing. Look at me. Look at me driving. Yay!
To be honest, after just a few days of feeling a little bit better, I'm already taking it for granted. I'm planning my life around feeling better. When the time is right, I promise I'll let you in on my plans.
So there I was driving on I-480 minded my own business, 60 or 65 miles per hour. And then what do I see? I look over to the left, and there's Hallie's mom, my ex-wife Shannon, about half her body hanging out the window, cheering for me, with her arms waving up in the air. I imagine her saying, “yay, Hal, go!” It was a beautiful moment. It was so exciting just to run into someone I know on the highway. There was Shannon's excitement just cheering me on. Like, “Hal, you're out of bed, you're out of the house.” There was amazement and disbelief in her eyes. There was so much in that moment. I just wanted to share it with you. I wish I had a picture. It stuck with me all afternoon.
I sent Hallie a voicemail to tell her about this interchange between her mom and her dad on I-480 and I learned that Shannon was on her way to the airport to visit Hallie. It was one of those moments of serendipity that everything had to go exactly as it did that morning to make her car pass mine at just that moment and have that wonderful exchange.
I'm so grateful today to be feeling just a little bit better. It makes all the difference in the world, just to be a little bit better. You know, 2024 was a rough year, and even the beginning of 2025 was rough. You know, this illness is a one day at a time illness. I never know what body I'm going to wake up into in the morning.
Lately, it's been consistently a little better. I am not as ill. I'm not as weak. My nerves are not as sensitive. My ears are not ringing as loud. I'm able to eat and my breathing is calm. I'm falling asleep and I'm sleeping through the night. I may have a minor flare up, but I'm not having any of those devastating, life-altering crashes that I was having last year. I'm not using Ativan and I'm very grateful. Of course, there's no rhyme or reason to it. I'm not doing anything different. I am taking two and a half milligrams of Abilify every day. But I just can't imagine that's having this effect.
I think it's just the random will of the illness. It does what it wants, and right now it just decided it's gonna ease up on me a little bit. It said, “Hal, you deserve a little break. I'm gonna give you a little bit of summer time.” Yeah, thanks ME/CFS.
Here's another story about celebrating being just a little bit better.
A couple weeks ago, I drove to Oberlin College just for an afternoon at my beloved Unitarian summer camp, called Summer Institute that happens every year in July. And I'd been going for 25 years up until the pandemic, when everything changed and I got sick. But I went for an afternoon to Summer Institute, and while I was driving up there, I called my daughter, Hallie, and I said, “Hallie, guess what?” And she said, “What, Daddy?” the way she does. And I said, “I'm going to Summer Institute. I'm in the car now, and I'm on my way.” And Hallie was so excited. She was so excited for me and so happy for me. Her dad was out of bed in a car the way she remembers me.
Later that afternoon, I got a text from Hallie. It said this, “I am literally so happy you're able to go to SI, that literally made my entire month. I'm beaming and floating around my apartment.” Yep, thanks Hallie.
So I'm here to spread a little bit of the good news today, your friend Hal is feeling just a little bit better. Thank you, God.
You know, I don't know what to expect tomorrow or the next day. Today has been literally one of the best days I've had in a while, driving up to Solon, I really enjoyed the 12-step meeting. You know, I take the wheelchair wherever I go. It's really convenient. I pop it right up onto the rack in the back of my car.
And then on the way home, I stopped at Giant Eagle to do a little grocery shopping. I love grocery shopping, and thanks to all the times that I've bought from Giant Eagle on Instacart, I had $75 worth of rewards. So my groceries were free. Yay! Free groceries from Giant Eagle! $75 worth. It doesn't get much better than that.
Well, I'm gonna close off this episode by sharing some big news with you. Yeah, with all these better days, or with this handful of better days that I've had, I made a decision. I bought a lying down plane ticket to England. Yep, some of you may know that I've been in a long distance relationship with a woman in England named Emma. We're a Substack couple. We met on Substack back in October of 2024 and we've been hanging out on WhatsApp and FaceTime ever since. It's been beautiful. She's an amazing person and we have a wonderful connection.
And guess what? In September, God willing, I'm going to England. Along with my traveling companion, Annette, we are flying to London, England, where Emma's mom is gonna be picking us up, and we're gonna drive the two hours north to Warwickshire, where Annette and I have an Airbnb waiting for us in rural English countryside, just a few miles away from Emma's house and Emma and I are gonna meet for the very first time.
Yep, I'm coming. I'm coming to England. Oh my god, yes.
So that's the exciting news I wanted to share. We're counting the weeks down. It's down to about seven weeks until Emma and I meet for the very first time after 10 months. It's a big deal for both of us. We've been hoping this would happen. Like me, Emma lives with a nasty version of ME/CFS. So our ability to travel, our mobility is very limited. So I'm taking this opportunity of feeling just a little bit better to hop on a plane, lying down all the way, and hop over to England. Can you believe it? Yay.
Everyone. That's my story for today. I'm gonna keep it short. Thanks so much for listening. Thanks for caring. Thanks for hanging out here on Substack. Remember, you got a body. Go live in it. If you're having a better day, congratulations. If you're having a not so better day, hang in there. You never know what tomorrow's gonna bring. All right. I love you. I care about you. I'm still here. Stay in touch. Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome. I’m sending a big “Thank you!” to all the subscribers of “Living in a Body” and an even bigger “THANK YOU!” to the 91 paid subscribers. Your support means so much to me. I appreciate you.
Fallow Time
(Press PLAY above)
I guess I could stop right there. Got nothing to say and don't know how to say it. I could turn this machine off right now and lay back down and do some more resting. But I'm so sick of resting. I'm so tired of resting. I'm tired of these limitations. I mean, come on, it's almost the first day of summer. We should be out riding bikes and jumping naked into the quarry, doing all the summer things we used to do. I'm tired of being sick, tired of being in bed.
But if I can't do all those summer things, I'll settle with just making something. You know me, I love creating. I love making things. Since I gave up all the other drugs, it's my drug of choice these days… and my rations are so sparse. Doing.
I love me some doing. Just give me a whole batch of doing. Give me a whole day of doing, I'll be happy, at least for a little while. That's what I want. Just some doing. Historically, give me a choice between a project and a person, I choose the project. And I've paid the consequences; doing never really got me where I wanted to go. I know now it's the being, it's the being with — being with others. I still got a lot of work to do in that area. It doesn't come naturally to me. I've spent much of my life lining up project after project. Never took the time to master being with myself and with others.
It's the relationships.
That's what my dad always said. He said, “Son, it's the relationships.” I was heading off to college, and I remember him making it clear to me, “Son, it's the relationships that are important.” That's what he said. And now I say, “But Dad, I'm scared. I'm mostly house bound, and I spend all day in bed. Being with people takes so much energy, and I have so little energy. What do you say to that, dad?” I wish I could have one more conversation with him.
You know, it just occurred to me that today is the eight year anniversary of my dad's death. Maybe my mom, my three sisters, my daughter, and I'll head out to his gravestone to say hello out there by Standing Rock. I'll take the wheelchair. Yeah, that's a good idea. Go out there and kiss the grave.
He was an incredibly wise man. He was really a genius. I often wonder if my dad was lonely in the world, though. It was hard for anyone to come up to his level of intellectual capacity, but he was focused on service. He was focused on serving others. Every Saturday morning, my mom would give him a list of chores, and he'd get on his hands and knees and clean the living room floor without a single complaint. Having worked all week, he knew that his role was to serve my mom. He spent his life serving his family, and he served the earth. He served the poor, served the less fortunate.
His son - that's me - is more of the self-centered variety. Yeah, more focused on “Me, me, me. What do I get? When do I get to do what I want to do?”
That's probably an exaggeration. I've done my share of serving others, but you get the point anyway.
It's interesting. They say that the self centered life does not lead to contentment. So that's what I've been working on, how to get get outside of myself and serve others. It's not easy when you spend all day in bed, mainly thinking about … myself.
Anyway, my three sisters and my daughter are in town this week. I'm blessed, truly blessed. They're walking downtown right now and I'm laying in bed feeling sorry for myself. So I figured I'd make an episode, see if I can get some of this stuff up and out. See if I can make some connection with you. Thanks for listening.
I guess the reason I create - besides the fact that I love the creative process, I love firing synapses and putting puzzle pieces together to make something new - but really, I'm hungry for connection, even though I have a tendency toward isolating. I'm starving for togetherness, even though I've spent most of my life living alone. I'm dying to live in community, to feel that closeness, to dance in the circle and sing around the fire.
Yeah, that's what I want.
All I can do from this bed is to tell my story. So here I am - gonna tell my story for a few minutes.
It's the middle of June. The windows are open. The wildflowers came back this year, and the poppies are in full bloom. And this is my first post in over a month.
I've been very aware of that. It's kind of been hanging over my head. It's been a fallow time for me lately, and I'm not particularly comfortable with it. I just haven't had it in me to create. I don't know what to say, and I don't know how to say it, and I'm scared to say it. What if I was really honest? All the battling thoughts, all the sadness and the grief, all the doubting and the questioning, all the loneliness, all the fear and all the discomfort, all the hiding under the covers, and the wishing things were different. What would it be like to really be vulnerable about what's going on inside? It’s sounds really scary to me. Maybe I’ll leave that for another day. The podcast is called “Living in a Body.” I could just give you a weekly list of all my symptoms, and leave it at that. But who wants a list of symptoms?
Here we go anyway.
This is what it's been like living in my body. It's 2025. I'm 59 years old, living with moderately severe ME/CFS. Here we go.
I've been going through another rough patch, maybe not as rough as it's been, but I haven't been sleeping lately. Insomnia. Sleeplessness, just occasional dozing is all I get. It's been brutal. I get into bed and I get this, this restless legs feeling - restless whole body - and I roll from side to side, I turn from side to side, try 100 different positions, and nothing makes me fall asleep. Eventually, around three o'clock or four o'clock in the morning, I doze off for a little while, and then I'm up again at five, five-thirty.
It's crazy. It's like my sleep button just isn't working. I don't even sleep during the day. I just doze. It's been brutal. Add the insomnia and the sleeplessness to chronic illness - it's been a very challenging season, as seasons go. Another added thing to my sleeplessness - I have arthritis in my right shoulder, and it's like a crumbly, fragile kind of bony pain. I can't lay on that side of my body, so I'm limited to one side of my body, and it's … I never realized. I guess I've known for a long time how important sleep is, but I'm realizing it to a very big degree now.
Oh, and on top of the sleeplessness and the pain in the right shoulder, I've got vertigo at night, so I lay down and the room starts spinning a little bit. This body of mine is just 59 years old and kind of falling apart. It's been rough.
I look good, though. Not as good as I used to look, but I don't look sick, I look healthy. That's the crazy thing about this illness, except for the psoriasis all over my fingers and all over my legs, the illness is invisible.
Today. I just feel so void of energy. I got no oomph. It's like my tank is running on empty. I got nothing in the tank, but my Substack’s have been hanging over my head lately, and I decided to finally turn on this microphone, and see what comes out. I'm glad I did. I'm glad we had this time together, me and you talking about nothing.
I think I'll finish off by reminding us - reminding me - of this, this moment, this miraculous moment. This is the moment. This is the moment that I have. All those other moments are just a figment of my imagination. This is the only moment, and I have a choice in this moment of where to put my focus, and in this moment, I choose gratitude.
Thank you, God, for this moment. Thank you - I get to be alive. I'm thinking of all my friends that don't get to be alive anymore. Thank you - I can breathe without assistance. Thank you - I can eat. Yeah, thank you for my daughter, the fact she has three wonderful aunts, and the best Bestie ever, and thank you for the phone call I had just a little while ago with my friend Aiden. We made a nice connection. And thank you for my girlfriend Emma that I get to talk to tomorrow on FaceTime. Hopefully we’ll get to meet someday.
Anyway, I'm thinking of you. Mainly I'm thinking of myself, but I wish I could have you over. I wish we could sit around in the living room and take turns telling our story. I guess we'll have to settle for the comments section of this Substack. So feel free to leave a comment. Tell me everything. Yeah, I'd love to hear what's alive in your life today. If you've got symptoms, tell me all of them.
All right, thank you. Hey, remember, you live in a body. Take advantage of it while you got it. It's not going to be here forever. Enjoy every moment, even if it's not easy, even if it's not easy, just say yes. That's what I'm gonna try to do as I get ready for this long night of sleeplessness. Oh, man. Thanks so much for being here, everybody. Enjoy the day, and talk to you next time. Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Please see additional resources to learn about ME/CFS at the bottom of this post. This episode was produced as a podcast. Press the PLAY button above or read the full transcript below. Thank you for being here. Hal
Who Cares
So I missed ME/CFS Awareness Day again this year. It was May 12th. I'm just a few days late, but here we are just in time for my Substack going out on Saturday. I pulled together a couple of my friends, Emma Kitchen and Peggy Munson, and we are going to do our best to tell our story… tell a little bit of our story around this illness — in hopes of making a few people aware. So we'll jump right into the middle of the conversation between Emma and myself. Emma begins with a little story. Here she is. Emma Kitchen.
EmmaSo I was an avid rock climber and at the time I became ill, at the exact time, a girl that I used to climb with had a climbing accident and became paralyzed below the waist, and she got a lot of attention (rightly so, because it's a horrific thing to have happened to her) but the whole community came around her and she got loads of get well cards, loads of support. She had journalists around her. She became like a local celebrity. And I didn't even get a get well card. You know, nobody cared at all, like they showed no care whatsoever.
And within a year, she was back at work, she had an adapted flat and she was skiing in the Alps on adapted skis and she'd written a book about her accident. She was like a local celebrity because of her accident and there was me, lying on a bed unable to speak. You know, even 13 years later, still have not been given my life back as it was. Oh, it's just so unfair, isn't it?
Also at the time in my climbing club, two people got bowel cancer. And of course, there's loads of sympathy and loads of empathy. I even spoke to them at the time because I was chronically ill, and was trying to support them through the journey, you know. And again, like, a year later, they're both fine. They're both having adventures all over Europe, and they've got their life back.
I don't know it's just… normal illnesses gain so much sympathy and support from family and friends in the local community, and then there's us with this condition, and nobody cares. Nobody bats an eyelid. And I don't understand it, because the level of suffering that goes with this condition is just obscene and we don't get any credit for it. We're just a bit tired. I'm just a bit tired. It's like, that's what gets me. Do you know what I mean? Like, all of the attention, but you get the attention, though, don't you, Hal? You do get it? Yeah, you do.
HalI get some attention.
EmmaYeah, but that's such a unique experience in this community, isn't it? That your condition seems to be acknowledged and you have supportive people that care and show interest and hear you. I think that's such a unique experience. I think you would struggle to find an illness that is as isolating as this one.
HalI was mentioning this post and talking about ME/CFS Awareness Day, and you said, “Nobody cares about ME/CFS awareness.” Would you talk more about that?
Emma(lol) No. I said, “the only people that care about ME day is people with ME.” Like, nobody cares. Do they?
HalSay more about that? Like, what's your what's your experience about nobody caring?
EmmaMy personal experience of nobody caring is that nobody has shown me that they cared. So only my mum, because I live with her and she's my carer, has taken an interest. None of my family have even bothered to find out what the condition is, shown any kind of concern or interest. My friends the same. It's just nobody cares. Doctors don't care. Nobody knows what it is. Just nobody cares.
I mean, if you had that experience though of nobody caring or… you haven't, have you? You haven't had that experience.
HalWell, it's easy when I'm home alone at night in this big house all by myself, it's easy to start thinking that nobody cares, but I do have a nice handful of people that care a great deal.
EmmaYeah, I suppose that's because you were such an important part of your community. But for people who haven't had that big social life. When you go into this illness, you know, it's just so isolating and you just feel so uncared for and unsupported, and it’s just…
HalWhat's something people could do to show you that they care?
EmmaI mean, just a quick Google on what the condition is that would be a great start.
HalYeah, a quick Google. All right, everyone, that's that's your assignment for the day. A quick Google.
EmmaWhat about for you?
Hal I don't know.
I was just thinking today. It's such a gorgeous day outside and I was thinking. Who wants to think about ME/CFS? It's such a depressing subject. People are out enjoying their lives. So, I guess what I would hope is that people take a few minutes to read this post. (see additional resources below) And I guess I want people to know that even though the weather is great outside, there are still many of us living in bed with this illness.
EmmaDo you know, I think what's so hard is it's so hard to explain how awful it is. It's so hard to explain how it feels in the body. It's impossible to even describe it to a doctor. You know, it's just so isolating, because it's so hard to share the experience of what it is.
You know, I remember I went to see a specialist. This is a “specialist,” air quotes around that. And he was like, “so I believe you're feeling a bit tired,” and I'm like, “No, I've just spent the last year unable to go to the toilet, unable to speak, unable to chew food, unable to sit up, unable to have daylight in my room. And you're just saying I'm feeling a bit tired.” And that's the specialist.
That's British, that's British healthcare smashing through. And it's terrifying. It's terrifying to be this ill and to have nobody supporting you and holding you in any kind of nurturing medical… you know, what's the word? I don't even know what the word is.
HalWell, Emma, it's great to hear you talk about this. I just listened to the recording of Peggy Munson. She sent it to me. It's a pretty intense picture of what it looks like for many people who don't have the care that they need.
EmmaYeah. It's a similar picture here, though, as well.
Hal WalkerI know. Everywhere. Imagine, imagine other countries. Is this a worldwide illness, Emma? Or is this mainly just in England and the US?
EmmaFrom what I understand, it's very heavy in the Western world. It's more present in the Western world, but it is everywhere. It's weird, isn't it? And it kind of exploded from nowhere in the 80s. It’s such a weird thing.
I can't wait for them to find out what it is, just for that validation, you know, that's probably all I hope to ever really receive in my lifetime, just the validation, instead of being treated like I'm some kind of, you know… hypochondriac.
HalEmma, let's listen to Peggy's thing, and we'll come back and finish this off after we listen to Peggy.
EmmaAlright, let's go for it
Peggy MunsonThis early May marks my 33rd year of getting sick with postviral ME/CFS and May 12th was also International ME/CFS Awareness Day. Thirty-three years of this illness is such an impossible hell to quantify. Even in my best intentions of writing a blog post about it, I could not pull it off for today, but will try in the coming weeks and months.Most of those 33 years have been spent in some reclined position, usually my bed, feeling sick on a deep cellular level most of you probably can’t imagine unless you have the misfortune of suffering from Long Covid. For a large part of that time, I couldn't even have people too close to me and talking to me due to extreme sensitivity to sensory stimulation that leads to brutal neurological symptoms. For sixteen years, I have been almost completely unable to talk on the phone except to leave messages or record text audios. For over a quarter of a century, I have been unable to travel any real distance.Despite how extreme these symptoms and my dozens of others are, my family has utterly refused to be my caregivers for 33 years. And for almost two decades now, they have followed the advice of terrible, unconscionable therapists and tried to extinct any mention of my illness. The resulting estrangement from my family is what led to my full dependence on Medicaid services, the same ones that could be cut any time, as Medicaid is the primary source for all nursing home and in-home care in this country. Any cuts to Medicaid programs that affect disabled people will simply end the lives of those of us desperate enough to need these programs. Right now, somewhere between 700,000 and 800,000 people in the US are on wait lists to get on the personal care attendant (PCA) waiver I use for primary caregiving, to simply stay alive. These are all people who qualify for Medicaid and have extremely-limiting illnesses and disabilities, and many, if not most, will wait years to get care they need urgently, like tonight. To cut such Medicaid programs isn’t even “soft” eugenics: it’s just eugenics. Please make no mistake about how urgent and serious this is, including for anyone you know in a nursing home as it’s likely Medicaid-funded.The “best” thing about being this disabled is learning what it is to be disabled and how senselessly (in the US at least) people are forced into unsurvivable circumstances because of it, from the sub-poverty wages of SSI and SSDI, to the utterly absurd hardship of getting on the PCA program, to the insane caregiver shortage that completely relies upon unpaid family caregivers to willingly step up. Please honor my “sickerversary” and ME/CFS Awareness Day with me by watching some ME/CFS awareness videos on YouTube, and educating yourself about the current care crisis in America and what cuts to both social security and Medicaid could mean for disabled Americans. Mostly, I just want to say that whatever any of you are going through, you are much stronger than you think. I am a survivor of thirty-three years of unimaginable torture inflicted by an illness that is underfunded, underrecognized, and totally incurable at this point. When I passed the 3-year and then 7-year mark – already significant in the 1990s – I knew already that less than 4 percent of people significantly recovered from severe ME/CFS after that point – stats I now see Long Covid patients throwing around. I still hoped and tried everything imaginable to get better and recover, but the best advice I heard recently from an ME/CFS patient is that radical acceptance and not clinging to an idea of reclaiming one’s former self is the only way to go forward without further injury and I take that to heart every day. I accept this is my life, and I do whatever I can to make meaning out of it.
HalWow. Thank you so much, Peggy Munson. Thank you so much for sharing. I think you already know this, Peggy, but you're my hero. Ever since I met you, I've just been amazed at your ability to survive so beautifully with such challenging circumstances. The fact that you keep going the way you do keeps me going as well. Thank you.
So Emma, Peggy ended with this idea that in order to avoid further injury, we need to have acceptance and let go of our former self. What do you think about all this?
EmmaYeah, I mean, what a powerful way to to end her message. And I agree. I agree completely. I think it's the only way. And for me, you know, it was just… see, I don't know if I want to talk about it… I don't want to say that. But no, I don't… (lol)
HalGo ahead, Emma! You're doing great.
EmmaI was just thinking about how before I found acceptance, for me, it was suicide. You know, that was the only thing that gave me any relief, thinking the fact I could kill myself, that was the only thing that kept me going, was knowing that I didn't have to keep going. And now, you know, I reached a place of acceptance, and it wasn't until I'd reached that acceptance.
But coming to acceptance is such a painful process. It's such deep grief work, and it's terrifying. And I put it off for so long, just clinging to hope that something was going to change. I was going to get better. And like Peggy, you know, she's on call seven years, and that was, it was like that for me. I was like, God, God Almighty. It's like nine years, 10 years, you know, 13 years. And I don't know you, just at some point you just have to come to the realization that this is your life. And I think as soon as you reach that place, it's almost like you can start seeing the beauty of life again. Because it's almost like, while you're putting out kind of hope that something's going to change. You miss this very fine, delicate aliveness that can be felt even in a sick body, and once that gateway to acceptance has been walked through, as painful as it is, you can become alive again, even in the most challenged and restricted body, there can be life and vitality discovered. And it can open up a new experience of life.
I say to my friend who has M.S., it's like, it's not that you've got a worse life now. It's just it's a different life, and as soon as you can get your head around the fact that it's different and let go of the life that it was, you know you're going to suffer, but as soon as you come into that acceptance of a different life, right?
HalThat's what that's what Peggy says. She says, “not clinging to an idea of reclaiming one's former self is the only way to go forward.”
EmmaYeah. So powerful. Yeah. She said it much more succinctly.
HalWell, Emma, this has been great. This is ME/CFS Awareness Week, as far as I'm concerned and we are doing our little part in spreading the word about all the people out there who are not getting the care they need. Thank you Emma.
EmmaThank you, Hal and thank you, Peggy.
HalWhat are three things that people can do today to to help spread the word. Like Peggy says, “look up some YouTube videos on the subject.” I need to find one to share with everybody.
EmmaYeah. I mean, that's what's that film. Is it “Unrest.”
HalYeah, watch “Unrest.” That's a great way to find out more.
EmmaPlease watch it..
HalPlease watch “Unrest.”
EmmaAlso check out Whitney Dafoe. I mean, have a look at how bad this can get. Because people just hear the word fatigue and shut off. It's not about being tired.
HalI'll share Whitney's post too in this thanks, Emma. Thanks, Peggy, thanks everybody. Hey. We're wrapping it up here. Episode 111. Yeah, hey, remember, you live in a body. You have a body. Yay! I have a body. I’m gonna love it. I’m gonna enjoy it. Whatever you got. Love it. Because it's not going to be here forever. Thank you so much for being here. Thank you for listening and have a good day. Have a good week. Bye.
Learn more about ME/CFS below:
World ME Alliance
Whitney Dafoe’s Substack
“Unrest” Documentary
Open Medicine Foundation
Donate here.
Our Vision
Open Medicine Foundation (OMF) envisions improved health care for patients suffering from multisystem chronic, complex diseases with collaboration between patients, clinicians, and researchers.
Our Mission
-
Support collaborative medical research to find effective treatments and diagnostic markers for chronic complex diseases with initial focus on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS).
-
Keep the engaged community, clinicians, and researchers informed about OMF research projects and results.
-
Bring together “thought leaders” from around the world to brainstorm and participate in targeted initiatives.
-
Encourage and engage the patient community to take an active role in their health care.
-
Support health care education about chronic complex disease.
-
Advance translational research and information-based research into optimum clinical medicine, including the diagnosis and treatment of these poorly understood diseases and the under-served patients.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Every Monday afternoon, my friend Bruce comes over at four o'clock to meditate with me. He shows up at four and we meditate for 20 minutes, we say a few kind words and then we do a really friendly fist bump. Then he heads out the door. Well, yesterday, while we were meditating, I heard some scratching coming from the other room. I heard it… and then I forgot about it. And this morning, when I went in to use the bathroom, there in the toilet, floating on the surface of the toilet water was a dead mouse — a black mouse with big ears just floating there, dead — with little mouse droppings on the floor of the toilet. It was so weird.
The interesting part of this story is… first of all, how did a mouse get in my house and how did it end up in the toilet? Who knows how long it's been hanging around here and who knows if there are other family members around. I hope not. I'm guessing that it climbed into the toilet to get some water and once it got in there, it couldn't find a way out.
But the really interesting part of this story is… my long distance girlfriend Emma and I are listening to a book together, a book called Sipsworth by Simon van Booy. It takes place in England and it's about an old woman who befriends a mouse that she finds in her house. It's such a lush book. Every single line feels like poetry and it's narrated by a woman with a beautiful English accent. Sometimes I'll pause the audio just to repeat a line that she says that I find so beautiful. The book is read by Christine Rendell.
Here she is: “before returning to the couch, she glances into the pie box where a gray head with long whiskers is peering out through the hole.”
So it's been such a joy hearing the story of an old woman who gained so much purpose and meaning by befriending a mouse. But I didn't get the chance to befriend my mouse. The first time we met, she was dead.
In the realm of interesting and weird connections, in the realm of coincidences, I have a whole ‘nother unrelated story to share with you. It goes back to 1993 when I moved to New York City to become a famous folk star. Actually, I never moved to New York City. I moved to my friend JP's parents’ house in Great Neck, Long Island. I was a bit of a mess back then. I had long hair and I wore messy clothes. I got a little bit lost in the sex shops, the coffee, the muffins and the marijuana.
So I'll tell you more about my escapades into the city some other time. But for today, I just want to tell you about sitting down in JP's parents basement in the middle of the afternoon, high on pot, improvising song lyrics into my old four-track recording machine — right off the top of my head. You see, that was my specialty — improvisation. I used to do a show called “100% improv.” That was actually just a cover for a guy that was chronically unprepared. I didn't have the discipline and the focus to sit down and actually write a song. So I would smoke a little pot, turn on the recording machine and let the lyrics fly.
Here's the interesting part… In these afternoon wild, creative recording sessions, I would just try to open my mouth and let whatever sounds come out. Free of inhibitions, my goal was just to let it flow, to be loose and let the words out. Later on, I would sort through my improvisations and try and find something worth keeping. One sound or one word that used to come across my lips regularly was “psoriasis.” For whatever reason, I don’t know. I didn't have psoriasis. I didn't know anything about psoriasis, but it was one of the words that would regularly come out of my mouth.
Okay, 10 years later… yeah, we're skipping a whole bunch of the story, as a matter of fact, a whole decade. But 10 years later, my fingernails started doing weird things. They started having ridges and the tips of them started coming away from the skin and I started getting this weird sore on my behind and I started getting flakiness in my hair. I would scratch my head and all the snow would fall to the pillow. It wasn't much later that I learned that I had psoriasis. It's an autoimmune condition where the immune system attacks the skin and causes big red blotches. I had it on my behind and on my fingernails and on my scalp. Today, I have it all over my body.
Yep, after all those sessions of singing “psoriasis” in JP's parents basement. I ended up with psoriasis. I guess it's kind of like reading that book about the woman and the mouse and then finding a dead mouse in my toilet. But the connections don't end there. The story goes on.
We're going to jump another decade to 2013 when I was in Kauai — again, with my friend JP, teaching a harmonica workshop. JP and I and a couple friends were strolling along the black lava rocks down below Ben Stiller's mansion when a rogue wave swept two of us into the ocean and only one of us made it out alive. That was me. Our friend Ash was last seen floating face down into the ocean. Yeah, it was a terrifying and traumatic event for all of us. I was life-flighted over the cliffs of Kalihiwai Point to safety. Yeah, my whole being experienced some great trauma that day. But I survived and I made it home to Ohio to see my daughter and my mom and my family.
And not more than just a few weeks later, my thumb swelled up. I had an aching, swelled thumb and also I was experiencing numbness in my arms. So I went to the internet and I did a little search, “aching, swelled up thumb with numbness in the arms,” and I came upon something called “psoriatic arthritis.” Now, psoriatic arthritis is a very frightening illness, especially if you find out about it late at night on the internet, like I did. The very first thing I ever read about psoriatic arthritis was a personal account of someone experiencing a sudden onset of a wave of psoriatic arthritis sweeping through their body and suddenly, overnight, becoming disabled with great pain.
And I got it into my head. “Oh, st. I have psoriatic arthritis,” which is an autoimmune condition related to psoriasis, where your immune system attacks your joints and “there's a chance that this thing could sweep through my body with a sudden onset.” And I got scared. And guess what? Not more than a couple weeks later, I woke up in the middle of the night with the experience of a wave of psoriatic arthritis sweeping through my body. I kid you not. It was like a fever. The very fear that I had heard about on the internet came true. Remember, I was telling you about that mouse that I've been reading about that ended up dead in my toilet? Yep.
Only weeks after being swept into the ocean by a rogue wave, only days after reading about it on the internet, I was swept into the world of psoriatic arthritis by another rogue wave. I woke up with arthritis in all my joints, both knees, both elbows and both hands. I remember that morning walking through town, all the way over to the house of my girlfriend at the time, in a desperate state of disbelief, in a kind of dream state of fear, not knowing what was going on in my body, completely powerless and afraid.
It was kind of like several weeks earlier, being in the ocean, being swept underwater, realizing that the ocean didn't care that I’m Hal Walker. “What do you mean? How could this be? How could this be?” But it was. Psoriatic arthritis didn't care that I'm Hal Walker and I had all kinds of much better plans. Eventually, I made it over to the rheumatologist who officially diagnosed me with psoriatic arthritis and prescribed something called “methotrexate.” (and that's a whole ‘nother story that we're not gonna talk about right now)
But the coincidences go on, the weird connections go on. The story continues — 10 years later. So, back in 2013, I dealt with a lot of pain in my joints for about a year. But then I had a flare up of ME/CFS symptoms and the joint pain went away. Now, isn't that interesting?
Jump 10 years later, a whole decade later, 12 years later and here I am, just a couple weeks ago, in deep ME/CFS territory — severe symptoms, almost fully bed bound, having a hard time eating, really severe neurological symptoms, having more crashes than I care to count and generally just overwhelmed with the symptoms in my body. Then psoriatic arthritis shows up to save the day. (lol)
No, that's not exactly how it is, but for the last couple weeks, I've been having real bad restriction and pain in my right shoulder. I can’t really lift the upper part of my arm. Fortunately, it's not actually constant pain. It's only pain when I move my arm or think about moving my arm… or when I lay on my shoulder. When I'm just resting, it's not pain. It's just a distant kind of fear of pain if I were to move my arm. The ache spreads out to my back and my neck.
But anyway, interestingly, fascinatingly, some smart doctor should pay attention to this — my ME/CFS symptoms have eased ups little bit. I can't guarantee the connection. It could be the two and a half milligrams of Abilify that I'm taking every day. But my sense is that my body is working on the psoriatic arthritis right now. The psoriatic arthritis is dominating and therefore, my brain is easing up on the ME/CFS symptoms. Isn't that fascinating?
I think that's all I have to say. That's the whole story. It's to be continued.
For the last couple weeks, I have not been as ill, a little bit less weakness, less illness in my stomach, no crashing and I've been off Ativan for two whole days without needing it. But I've got this damn pain in my right shoulder. It's like a crippling, kind of crackly, awful, kind of hard to describe, fragile joint, radiating bone pain.
That's the whole story, the story of the mouse. I'm just so fascinated by all these connections, all these weird connections — all these coincidences.
You know, I'm not sure which I prefer, the ME/CFS symptoms or the psoriatic arthritis symptoms. To be honest, I think I prefer the pain over the illness. ME/CFS is so debilitating and so scary. Psoriatic arthritis is debilitating. (lol) Psoriatic arthritis is debilitating and scary too. But I think I'm not as debilitated — like I've sat here and made this whole episode without an Ativan.
Anyway, that's my whole story. I'm sticking to it. I'm gonna close with a little excerpt from the book Sipsworth that I think is very fitting. Our friend Helen is thinking about the coincidences of her life having met this mouse.
It goes like this, “Could what we call coincidence be something intended with a meaning purposely hidden? That would imply design — a god. But what sort of god would strike down a boy's father at dinner time?”
All right, everybody. It’s Living in a Body. By the way, you have a body. Go live in it. Go live in it! It's not going to be around forever — like that mouse. Hopefully that mouse had a good life. I'm wishing all the best to you and yours. Enjoy the day. Thanks so much for listening. Thanks for being here. I appreciate you. See you next time. Bye bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
We want more harmonicas! More music in the streets!We want more harmonicas! More music in the streets!
You know, eventually we all got to face it.
We got to face the fact that we don't get all the things done that we wanted to get done. Everybody's body eventually… fails. (lol) Yeah, that's a good note to start this off on. Everybody's body eventually fails and all the getting things done comes to an end. We all gotta face it eventually. Yeah, that's the trouble with living in a body.
Eventually it doesn't work anymore.
All the plans I had, all the big projects in my head, all the dreams, all the big ideas, all the revolutions I was supposed to make happen. The body fails and some other part of us has to take over, something beyond the physical realm. But I'm still attached to the world and some of my favorite projects probably aren't going to get done. We all got to face it eventually. But here's a little bit of my list…
Like — the Hal Walker song book, The video series for teachers about how to bring Banakula making and playing into the classroom, the how to play Low Key Gliding instructional series, re-recording all my songs at a more reasonable tempo because I was too high on adrenaline the first time around, learning the Chuck-a-chucks, learning the cello, learning jazz piano, and writing all those songs that never got ridden — all the undone projects. Now I'm not saying none of this is ever gonna happen. I realize that 10 minutes a day of focused attention can accomplish a lot, but I'm over here giving it all I got just to take care of the basics. There's not a whole lot of extra for revolutions.
I'll take one step forward today, and I want to tell you about one of my biggest ideas. It's the Harmonica Revolution of the 21st Century, which was one of my greatest unfinished contributions to humanity. Here's a little song about it, Ode to the Harmonica.
Playing the harmonica I often feel a certain glow.With this notion of hand motions, everything is draw and blowMusic comes from deep in the belly, deep in the heart and in my soul.In my pocket, a harmonica will go where’er I go.
For many years, I worked with children, teaching them to play the harmonica. I passed out thousands of Blues Band harmonicas all around the state of Ohio and I did most of my teaching in large group settings. I teach a whole classroom or a whole grade level or a whole school. You know, I don't remember what the biggest group was, but it was large groups. It was mass harmonica instruction. Each kid with a harmonica in their hand getting a foundation for a lifetime of harmonica playing.
And it wasn't just kids. One of the highlights was teaching prisoners at the Mansfield Penitentiary. It was me in a gymnasium teaching the blues to a hundred hardcore prisoners. I was in the middle of a big huddle of guys playing the “Sesame Street Blues.” It was amazing.
Over the years, I developed a highly effective method for teaching the harmonica to large groups of people. And I'm certain no one had ever done it like this before. It was an original method. And with as much humility as I can muster, it was the best method ever. It was highly effective. If you really want a foundation for a lifetime of playing the harmonica, use this method. Unfortunately, it's not available. The teacher came down with a nasty case of ME/CFS and never got the method packaged for your consumption.
But you should’ve seen us. Students had amazing results making real music on the harmonica within minutes and within days. We had so much fun in schools all around Ohio, lessons that these kids will remember for a lifetime. They tell me about it in the comments on YouTube. And I loved it. I loved it so much. (lol) It was so fun. It was so fun teaching the harmonica this way. I never really came up with a perfect name for the method, but it was “The Harmonica Revolution.” It was “Music that Fits in Your Pocket,” a foundation for a lifetime of playing the harmonica based on two choices — blow and draw.
You know, it occurs to me to mention that nowadays, nobody's playing the harmonica. There was a day when the harmonica was like the national instrument of the U.S. Every kid had a harmonica in his pocket. Every grandfather played the harmonica for his grandchild. I did my little part here in Ohio to bring harmonicas back into the daily lives of children everywhere.
But you don't get that anymore. Now we have iPads and Tiktok and Instagram. In schools, I think kids learn the recorder, but I want to say that harmonica is the ultimate, is the ideal school instrument. It costs less than five dollars, it fits right in your pocket and within minutes, you can be making cool, satisfying, real music — especially if you've got my method. I guess that's the unfortunate part, thanks to ME/CFS. This method is not available to schools all around the world. It should be. Boohoo.
Probably the best and most recent example of my success with this method was in that one town… Bucyrus, down in Crawford County. It was Bucyrus elementary school. I was over there and I had a a year-long residency. I’d drive there once a week. It was a two and a half hour commute. I left at like five in the morning and in all my mild ME/CFS glory, I'd spend the day there, giving everything I got to this school. And one of the grades, I think it was the third grade, we did mass harmonica instruction. There were probably at least a hundred kids in that class. Every week we would meet in the gymnasium and their chairs were lined up in rows theater style. I asked the teachers to give me full classroom management. The last thing you want is a bunch of teachers out there trying to “shush” the kids. I had my own methods. So I brought along my almost 20 years of refining this teaching method and by the end of the year, those kids had a powerful foundation for a lifetime of blowing the harmonica.
And I want to share a little bit of my method now. It's so hard to talk about. You have to see it. You had to be there. You have to be there. But I'm gonna give it my best. All right, here we go…
The foundational principle of this method is: in all beginning harmonica playing, there are only two choices, blow and draw, push and pull. And before we ever picked up harmonica, these students would master the push and pull of the diaphragm using hand motions. Actually, it was arm motions. Actually, it was using full body motions — pushing and pulling.
Learning the harmonica is a full body kinesthetic experience of breathing to make music. Before I ever put a harmonica in their hands, I'd say “blow, draw blow.” And they'd repeat, “blow, draw blow.” And rule number one was “hand motions at all times.” Every time they say blow, with their whole arms and their hands and their shoulders, they're pushing. And every time we say draw, with their whole body, they're pulling. And you got to remember, there's me up there, six foot Hal Walker, putting his whole body and spirit into these full body lessons.
I had this hilarious gimmick that worked every time. I would push and pull so dramatically that I would accidentally, on purpose, slide into the splits and call for the front row to save me. And they would rush around me and pick me up and lift my whole body, to save me from falling into the splits. (lol) It was hilarious.
After we mastered the “push, pull, push,” or the “blow, draw, blow,” we'd speed it up and make it more exciting, like this. “Blow-D-Blow Blow Blow Blow” etc…
Remember, hand motions at all times, and the students repeat exactly what I do. It was all “I go, then you go,” illustrating the push and the pull of the diaphragm. I wouldn't even hand out the harmonicas ‘till at least the second lesson. It was my theory that I could teach for a whole semester using just hand motions and these students would become great harmonica players — without a harmonica in their hand. I never actually tried it, but I'm still convinced it would work. Starting with hand motions was fun and accessible and not intimidating. It was like a dance that everybody could do.
Now, here was the key. From the very beginning, those kids are at the edge of their seat. I demanded it from day one — at the edge of their seats, back straight, feet on the ground, mastering the blow and draw. The number one rule was “hand motions at all times.” It's funny. This is all coming back to me now, but it's been years since I've even thought about this. I've been so deep in the illness of ME/CFS.
So… from the beginning, these kids learned who was in charge, and the beauty was, they loved that it was me. We had so much fun together.
While I was developing this harmonica method, I was also developing a highly effective method of large classroom management. And I'll tell you what it was right now. One thing I didn't do was make them pay attention for forty whole minutes. We’d do little spurts of five to 10 minutes, right at the edge of their seats — highly focused lessons, very methodical, moving one step at a time. And then I'd say, “let's take a break,” and that's what we do. I'd encourage them to relax, to talk amongst themselves and for two or three minutes, I would ask them to get as comfortable as they could in that chair. Like, pretend that chair is a bed and lie down in that chair and put your feet up if you want. You are totally free. You can laugh, you can talk to your friends. You can do whatever you want, as long as you stay in your own seat vicinity until you get the signal, which is, (Sung) “cuckoo cuckoo” and immediately the class responds, “cuckoo cuckoo” and then they're silent.
We would go from total managed cacophony to pure silence in mere seconds, and I wouldn't stand for anything less. I made that very clear.
The teachers couldn't believe it. They questioned the chaos, but when they saw how fast I could bring them back to attention, they realized it was something special. It's hard to explain. I was just such a fun military sergeant. Like, it's like the funnest version of a military sergeant that you could imagine. It was my only option with a hundred third graders in a gymnasium with harmonicas in their hands. I was very strict and very fun. So after they mastered the hand motions, eventually I'd hand out harmonicas.
And that brought about the second rule, “no individual tooting.” You can toot whenever you want — at home, at recess, when you're on the playground toot all day long, when you're in your bedroom toot, you can toot as much as you want. But when we're in this classroom, there is no individual tooting. When we toot, we only toot as a group. I made that very clear and I said it with a straight face. And they looked at me and they didn't know what to think. There is no individual tooting, N-I-T. And I'd go and say, “What's rule number one?” I'd call a student out. He'd say, “Rule number one, hand motions at all times.” “What's rule number two?” “No individual tooting.” Because there's nothing worse than a hundred harmonicas and every once in a while, a little toot coming out of one of their harmonicas when you didn't want it. I wouldn't stand for a single toot. You did not want to be the kid that got called out for individual tooting. But it was all in good fun. It was all in good playful, disciplined, productive fun — just the way I like it. And it worked. I had those kids eating out of the palm of my hands.
I loved whenever a kid did something right, whenever I noticed they got it just right, like if their hand motions were particularly expressive and right on the beat or their blow-d-blows were just right, I'd call them out. I'd go over and say, “What's your name?” They'd tell me their name. And I'd say, “Sally, it's a pleasure to have you in my class.” And then I'd shake her hand. So I'd put out my hand and she'd put her hand out. Typically, for the first handshake, kids would give a really weak, flimsy handshake. So I'd take that opportunity to give them a one-on-one lesson in how to give a proper handshake.
I taught 1000s of students how to shake hands — “firm squeeze, small shake, look the person right in the eye.” And we would practice it right in front of the whole class. And every time a kid got a handshaking lesson, it was an honor. This student knew she'd done something right and every other kid wanted to do something right to get a handshake. And by the end of the semester, by the end of the class, they knew how to give a proper firm handshake.
Of course, that was before the COVID days when we were allowed just to shake hands at random. I got sick a lot. I mean, I'd shake these sweaty little hands. I shook so many hands and I was always carrying some hand sanitizer around, but it never did the job — all that handshaking. Every Friday, I'd go home and be sick for the weekend.
So eventually, they'd get a harmonica in their hands. And the first thing is, we don't worry about single notes. It's “wide mouth, big sound.” Put the harmonica deep into the mouth. It's called the “deep firm tilt.” So put the harmonica deep in your mouth, firm lips, covering the holes, making sure no air is escaping, and tilt, tilt the harmonica slightly down. So with the “deep, firm tilt,” these kids would cover three or four holes, making a big sound, a full sound, breathing from the bottom of their belly, using the diaphragm, with a push in the pull. And the whole time, one hand's holding the harmonica, the other hand is doing the hand motions.
And then, the cool part about it was I would ask another student to come up and lead the whole class in “blow-d-blows,” whether it be hand motions or blows and draws on the harmonica. I explained to them that along with learning to play the harmonica, comes the responsibility of passing it on to the next generation. So while they were learning to play the harmonica, they were also learning to teach the harmonica.
So, once we master the blow and draw, all in one place of the harmonica, like holes 1,2,3 and 4 — two options. Remember, there are only two choices in beginning harmonica playing. We would move on to down and up and I'd start demonstrating how to go up and down on the harmonica. So now we had four choices — blow, draw, down and up.
The harmonica is all about making music with the breath. That's where it begins. I put off teaching single notes till much further down the road, so the students get used to making music right away, using hand motions, blowing and drawing, going up and down the scale. And then we'd start learning a song. The very first song was… (sung)
Do your ears hang low? Do they wobble to and fro? Can you tie ‘em in a knot? Can you tie ‘em in a bow? Can you throw them over your shoulder like a continental soldier? Do your ears hang low?
You know, the kind of sad thing is, I'm sitting here in my room and there's not a harmonica anywhere nearby. I went my whole life, I always had a harmonica nearby—in the car or in my pocket or on my desk, but they're all downstairs in a box. The reality of ME/CFS. If the Harmonica Revolution were to happen tomorrow, I'm afraid I wouldn't be able to be there. But it's not happening tomorrow. It's not happening tomorrow or next week. But who knows? You know, I remember I had this plan, the “Million Harmonica March on Columbus” was supposed to happen in 2010. It never happened.
But teaching the harmonica was one of the great joys in my life. And coming up with this system, this method, was such a delight and so satisfying. I guess the revolution would have been somehow making this system, or this method, spread all over the country, all over the world, revolutionizing music education. But here we are, living in a body, doing our best, facing the inevitable. Eventually, the body fails, and all the getting things done comes to an end.
The Revolution becomes more of an inner experience, a more subtle kind of transformation. And we get to go along with the natural process. You know, we're part of nature, and nature is so much bigger than all my revolutions. But we'll see where this leads. Maybe this post here will inspire some young whipper snapper to make this revolution happen.
All right. Thanks for listening, everyone. Thanks for hanging with me for this. It was fun to remember these times. Alright, enjoy. Enjoy living in that body of yours. Don't forget. Enjoy living in that body while you got it, because it ain't gonna be there forever. All right, everyone. I love you. Thanks so much. Bye.
For more Harmonica Revolution, check out the YouTube videos below.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Please join me in supporting the joint efforts of Open Medicine Foundation and The Bateman Horne Center to create the Medical Education Resource Center (MERC)—a program dedicated to training healthcare professionals worldwide in diagnosing and treating ME/CFS and related conditions.
An Illness Without a Doctor
In the spring of 1991, I was 26 years old. On that Friday, I ran six miles, took a shower and put on my big, brown sweater to wear to the open poetry reading at Brady's Cafe.
The next morning, I woke up with weird symptoms in my body. Suddenly, I couldn't run across the street without getting dizzy and weak and exhausted. Those symptoms never went away.
I told my dad and he took me to the doctor — his internal medicine doctor in Akron. I don’t remember much about that appointment, but I’m sure he took a bunch of blood tests and I’m sure they all came back normal. I've been going to doctors ever since. That's 34 years of doctors. That's 34 years of all kinds of tests just to rule things out. And they always came back normal.
Somewhere along the road, I came across the phrase “chronic fatigue syndrome” and after reading a few of the stories, I knew that's what I had. But I kept going to doctors. I kept hoping one of ‘em might help me. I kept hoping that one of them might say, “Yeah. It sounds like you have Chronic Fatigue Syndrome and here’s what you should do about it.” But, they just kept taking more tests.
I had an appointment with my rheumatologist yesterday. My expectations were very low, but I was glad to have the appointment.
I started going to see this guy about 10 years ago. In 2013, I almost died in a rogue wave in Kauai. And I came home and experienced a terrifying wave of psoriatic arthritis sweeping through my body. That was when I met my rheumatologist for the first time. That's his specialty — autoimmune conditions. Psoriasis and psoriatic arthritis are a couple of my co-morbidities living with ME/CFS. I remember loving the confidence with which he went around to all my joints as if he was looking for something. I trusted this guy. He’s an attractive guy with a turbin on and a real nice smile.
And yesterday, in the course of the visit, I said, “Hey, what about ME/CFS?” You know, I told him my situation. I'm bedbound. I rarely stand up. I use a wheelchair to go from my bed to the bathroom. I’m having difficulty eating, weakness in my lungs and weakness in my gut. He listened and he wrote down everything I said in his little laptop there. So I said, “What about ME/CFS?” And he said, “Would you spell that?” Those were his exact words. “Would you spell that?” And I chuckled on the inside. (lol) You got to be kidding me, right? But I wasn't surprised. I don't blame him, so I spelled it. I said, “myalgic, M, Y, A, L, G, I, C, encephalomyelitis.”
You know, I live in the world of ME/CFS. I write a podcast that mentions ME/CFS every week. My whole life revolves around this illness. I'm part of a support group on Zoom, 100 people on there all living with ME/CFS. And, one of the most relatable hashtag in my life is #millionsmissing. My girlfriend has ME/CFS.
My rheumatologist, though, it's not on his radar. Apparently, he hasn’t been listening to “Living in a Body.” He had to do a little Google search for the illness while we sat there. And that's not an unfamiliar story. That's been the story for all these years — 34 years of doctors. They've never heard of myalgic encephalomyelitis, also known as chronic fatigue syndrome. Or if they have, they don't know what to do about it.
So we're left on our own. We're left to figure it out on our own. One of the most debilitating, complex, multi-system illnesses in existence. And it's almost impossible to find a doctor that knows anything.
I've been having major difficulty eating. In fact, I've been having crashes after eating. It's terrifying. It’s coming down to I have to eat little tiny bits at a time. What happens is, I'll eat a meal. It feels good going down. I'm hungry, but a half hour later, it turns into chaos in my belly. And then I start praying that I don't have a crash. Today, I had one — after lunch. It's devastating. It's devastating to have a crash. Every one brings me into deeper illness and I just keep adjusting. The fact that it's now around eating?! Where do I go? What doctor do I go to help? Do I go to the gastroenterologist and explain what a crash is? He's never heard of a crash — probably never heard of ME/CFS.
Or do I just try to figure this out on my own?
Unfortunately, I'm pretty much resolved that I got to figure it out on my own. Though I did call to make an appointment with a gastroenterologist today. We'll see how that goes. I hope they do virtual visits, ‘cause I can't leave the house. All these specialists I could see at the Cleveland Clinic — the rheumatologist, the neurologist, the gastroenterologist. They don't know anything about ME/CFS.
On the Cleveland Clinic website, if you look up ME/CFS, the specialists you're supposed to go to is your primary. (lol) That deserves a little chuckle, doesn't it? I mean, I love a primary doctor. They're the front lines, but we're talking about a complex, multi system illness in a very severe form. I don't know about your primary, but my primary mainly knows about strep throat and the common cold, but apparently, your primary is supposed to teach you the basics of — I don't know what (lol).
I don’t know. I know this is kind of a downer, but I want to say one thing.
I got an email today from Open Medicine Foundation and The Bateman Horne Center. Those are two institutions that I have a lot of respect for and I'll warn you now that I'm going to invite you to donate to their bake sale at the end of this post. So get your wallet ready. I really want to call your attention to this email, because I think it's something worth supporting. It says “transforming ME/CFS Care, the Medical Education Resource Center. Open Medicine Foundation and The Bateman Horne Center partnered to create the Medical Education Resource Center(MERC), a program dedicated to training healthcare professionals worldwide in diagnosing and treating ME/CFS and related conditions.”
That sounds like a worthwhile cause to me.
See, I didn't feel capable of educating my rheumatologist about ME/CFS. The truth is I was scared and insecure. I’ve always been that way with doctors. I’m just an old hippie folk singer from the 90s. But I trust these guys to do the right kind of education. That's really what we need. We need to educate the medical professionals.
“Realizing our vision requires networking and dissemination among institutions and professional associates. As this process takes place, many are still without informed medical care in their local community.” That's me. Hal Walker. Your friend. Here in Kent, Ohio. So there's a whole series of resources to teach health care providers about ME/CFS. And you can donate to MERC, Medical Education Resource Center.
I think I'll probably donate after I talk to my sponsor, because I don't spend any money before just talking to my sponsor. It works really well. I'm not pushing the purchase button in the middle of the night like I used to. You know, I always pause, pause before spending. Pause before donating. Get someone else's opinion — someone I trust, like my sponsor.
Well, there's one other little bright spot of my day that I'd like to share with you to brighten this post up a little bit.
You know, Elanor Nadorff is making a film about me. Well, Emma opened up YouTube and came across this video that Elanor had just posted and Emma shared it with me. It's so beautiful. It's such a delight. Elanor is such a delight. In this video, Elanor tells her story of going in search of a piece of video footage of me filmed back in 2004 and her artistic process and passion to go in search of the material. It's a great story she tells. I encourage you to watch. It's 10 minutes on YouTube, and I'll leave it here.
I don't know everyone. I'm scared. This is the part where I get honest. I'm scared. I'm terrified. I don't know what to do. I keep getting worse and I don't know how to stop it. I don't know what to do about this eating problem. It's very serious… and I feel like I'm on my own to figure it out and I'm scared and frustrated. And, uh, one of the reasons I want to make this Substack is just to say, “Please, somebody do something about this. This is insane. Somebody do something. Someone tell me what to do.” Actually, don't tell me what to do. It's overwhelming when people start telling me all their ideas. So I'm not looking for that, but I just want somebody who knows something to help me. And I'm afraid to say, I don't think anybody knows anything, even the specialists.
But I'm left with just the spiritual solution of acceptance, gratitude, prayer, being of service wherever I can be. The 24 hours a day book today says, “So arise from earth’s bonds, from depression, distrust, fear, and all that hinders your new life. Arise to beauty, joy, peace, and work inspired by love. Rise from death to life. You do not even need to fear death.”
Yep. That’s what I’m talking about. (lol) Don’t even need to fear death. That’s what I want… letting go of the self. You know, “free me from the bondage of self so that I can do thy will.” I don't know what God's will is for me laying here in this bed, but it's quite a journey. I sure would prefer a different journey, God. I’d prefer a different adventure. This one's too hard.
I want the adventure where I get in the plane and fly over to see Emma in Warwickshire, England, and then we go up to… Glastonbury — hang out with the hippies in Glastonbury, and I get to practice my English accent with real English people, and then go along the coast, the English coast. I've never even been to England before. But instead, I get to be here writhing in my bed, trying to figure out how much Ativan to take, trying to figure out how to eat without crashing, pretty much all on my own.
You know, I've got a lot of support. I'm grateful for my friends and my family and my online communities, and my 12-step community and the guy who saves my life every day, my full time caregiver, Mango.
Okay, that's it for now. I wish I had more uplifting stuff to say, but the point of this whole Substack was just to say, “this is insane, such a serious illness to have no doctors.” There are specialists out there, but they're hard to get and They don't really know anything either. They don't have much to offer either. I went to one. The nicest thing about that was I told her my story for about 10 minutes, and she said, “Yep, you have ME/CFS.” First Doctor ever to tell me in 35 years that I have ME/CFS. I appreciated that. I've known it the whole time.
I've been to a lot of different — trying a lot of different alternative medicine approaches. It's been 35 years, I've tried everything. The interesting thing about the alternative medicine doctors is they always have real confidence. “Oh yeah, we can take care of this one. Just do this, take these little pills and take these little concoctions. I've seen this before. I think I can help you.” I kind of prefer the ones that say, “Listen, you're fucked, but let's try everything.”
I'm just feeling frustrated and scared and wanted to connect with you. I miss making these podcasts so much. I miss it when I'm not doing it, but I've been too sick. I don't know when the next one's gonna be, but I sure appreciate your support. I appreciate you listening.
Wish me luck once this adrenaline runs out. You know, the crazy thing about a crash is that immediately after a crash, I feel better. That's how I know I crashed. If a few minutes after it, I feel better. ‘Cause it means there's adrenaline rushing through my body, which means tomorrow is going to be a wired, insane day. The following day after that could potentially be the hardest day of my life. I keep having those over and over again.
This is the reality of ME/CFS. It's a real illness and there are no doctors.
I love you guys. Come on. Somebody figure this out. (lol) Somebody do something. Please. Pleeease. Donate to MERC, maybe that'll help.
All right, bye, bye.
I'm supposed to end on a positive note saying, hey, remember you got a body. Go live in it.
I love you. Bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” If you read or listen to this episode, please do me a favor and come over to Substack and hit the like button. It helps the algorithm and it helps to let me know that you’re out there. It makes a difference. Thanks so much! Enjoy! Hal
Lawnmowers in the Sky
I want to talk about the beauty of nature. I want to talk about the sacred beauty of nature. It might sound like a rant but I’m thinking of it more as a lamentation. It starts like this.
I opened up the windows yesterday for the first time this spring. It was almost 70 degrees out, so I asked my caregiver, Mango, to open them up for me. And that's what he did. And right away, a cool, nourishing breeze came into my room and moved through the house, and it had such a luscious, fresh smell. It smelled like real beauty, the kind of beauty that doesn't come in an Amazon box or in some kind of packaging. It's just pure, real, unadulterated beauty.
I slept last night with the windows open. It's the middle of March and I slept with the windows open. I remember waking up at about midnight and I could hear the bars downtown. There was still music going on downtown. I'm about a half mile from it, but I could still hear all the partyin’ going on. And I felt that cool, sacred midnight breeze through my window and it put me back to sleep.
Then I woke up again at about 3am and the bands had stopped playing, but I could still hear an occasional shout. There were still a few late night partiers hanging around. But then that quiet, cool, luscious 3am breeze kept blowing real nicely on my face. It was sweet. That and a half dose of Zzzquil put me back to sleep ‘till the morning. I can feel the breeze right now. I've got the window wide open and it's been a rainy, cloudy day today, but that breeze coming through the house is something special — having gone months without it.
Just so you know, I'm an open windows guy. I don't believe in air-conditioning. My poor daughter growing up. She just wanted to have an air-conditioner in her room. You know, like all the other kids. We had one portable air conditioner that sometimes I'd let her put up in the room, but essentially, her dad was morally opposed to air conditioning. My next door neighbor runs an air-conditioner in the hot months and I just resent the sound of it so much. I sit out on my back porch — my backyard is a natural refuge — and about 50 feet away as “rrrrrrrrrrr.” I don't know if that was such a good imitation, but you get the point. It takes the peace away. It's profane, it's irreverent and it's blasphemous. I realize those are some heavy words, and probably most of you have air conditioners.
I don't want to sound self righteous, but the earth is so beautiful. The silence of nature is so pure, so deep, so profound, so luscious and so endangered. I love the natural sounds of the world. I love the bird song and the breeze through the trees and the quiet — the cool, quiet moon and the warm, silent sun. And I love the loud, majestic crash of a thunderstorm. It's so sacred, it's so holy and it's so… healing.
I could feel it right now. Feel that? My blackout curtains are being thrown around and billowing in the wind. And there goes the door ready to slam shut… (door slams) There it goes. (lol) Oh, wait! I gotta have that open door again to get the nice flow. Hold on… Okay, I'm back.
So, in case you didn't know this, in order to get the real breeze coming through your house, you need to create a cross-breeze. So you need to open up a window on one side of the house and then a window on the other side of the house, so the air has somewhere to come in and it can flow all the way through the house. And then it has to have somewhere to go out.
It reminds me of my grandparents house back in Oak Park on Newland Avenue. My Papa T. and Bestie. Up in the attic, they had this big, huge fan. I remember we'd go into this little bitty attic and there was this huge fan. We could go up there and turn on the fan and open up the attic door and open up the door leading up the stairs and then you open up the front door or some windows downstairs and that huge fan would pull air up from downstairs, up through the house. It was just such a good feeling having that natural air move through the house. That's what I'm experiencing right now. I love it.
You know, I'll never go back to that house on Newland Avenue. I'll never get to go back up to that attic and smell those smells and feel that air. Those are some deep memories—finding refuge on the second floor of my grandparents house with my three sisters, my mom and dad, and that huge fan moving all that fresh air.
So I was talking about the sanctified and the divine sounds of nature, but then comes along the air conditioners and then my nemesis, single engine airplanes. So I've been wanting to tell you about something that's really bothering me. It's been bothering me for a couple years now. I'm really not sure what to do about it. I don't think there is much I can do about it. But for a while now, I've been wanting to do a rant on Facebook or a letter-to-the-editor. But I'm just gonna tell you guys now and get it off my chest. This is my lamentation.
So as I've already said, I love nature and I love quiet. And it's really having this illness that has introduced me to the extent of my love for those things. I've always loved nature and quiet, but I was always too busy to think much about it before. I was running constantly, always looking for the next project. But now more than ever, I love calm and peaceful things. I love trees and water and wind. I love flowers, I love mountains and I love seasons. But I don't love noise pollution and it's a real problem in my neighborhood.
You see, I live in a college town called Kent, Ohio. Maybe you've heard my song, “Kent Ohio. I know that I'm home when I'm Oh in Kent, Ohio, Time keeps rolling and our town keeps growing. Oh my oh in Kent, Ohio.” (lol)
So Kent's a peaceful town and I live in a particularly peaceful neighborhood, except for the single engine planes. See about a mile away in Sto-Kent is the Kent State University airport. Well, back in the years when I was goin’ constantly. I never really noticed it, or maybe the program didn't exist then. But now that I spend all day, every day in quiet time, I hear everything. It seems that at that airport, there's a program for student pilots running training flights in single engine planes all day long, especially on the nicest days of the year when all my windows are open. All day long and even into the evening are these single engine planes coming out of Sto-Kent circling my house. It's obscene. The noise is physically painful. It's like the sound of those slow grind drills at the dentist, not the high pitched ones, but the low, slow grind one, the drill sound that touches your brain in a weird way. It's a real blight on the audible world of my beautiful neighborhood.
Compared to the delicate wild flowers that are growing in my backyard, compared to the whispering winds that are blowing through the oak trees and the pine trees and the maple trees and the chestnut trees, compared to my three wheel scooter that's waiting in the garage for me to move silently around town in all her battery powered quiet beauty, these planes are rude and obnoxious. They sound like war planes and it seems that my house is right on their war path. They come zooming in from the distance with that deep grind and they get louder and louder and then they're at their loudest. Then, as if they've dropped all their bombs on my house, they gradually move off into the distance and get quieter. And then the whole cycle starts all over again about 15 minutes later, when the next plane moves through. It's unbelievable.
I call them the “lawn mowers in the sky.” And I'm not talking about electric lawn mowers. I’m talking about gas-powered, gas-guzzling, noise-polluting all-summer-long lawn mowers. And now I'm on a roll here. Let's talk about lawn mowers for a second. In my opinion, gas powered lawn mowers should be outlawed. It's obscene. (lol) I'm sorry. I'm sorry. Most of you probably have gas powered lawn mowers, but it's just wrong. It's a sacrilege! I mean, come on, it's 2025. Wake up, people! We have the technology. I've got an electric lawn mower, and it's got a nice purr, “bvvvvvv…” as opposed to the obscene, profane, repugnant, loud, obnoxious, gas powered lawn mowers that go on in my neighborhood all summer long while I'm trying to have my quiet time. (lol) Come on, people. What about me!? What about me and my quiet time? No, seriously, what about Mother Earth and her quiet time? That's what I'm talking about.
All right, I gotta slow down. I'm getting too riled up. Yeah, I can't really afford to get riled up about anything. This whole subject brings me back to the fact that I have a highly sensitive nervous system. ME/CFS has gifted me with a highly volatile nervous system that just can't handle much of anything — loud noises, getting riled up about things, even just basic human interactions. So even though it feels good for a minute, and I know I'm right, I can't get riled up about these single engine planes flying around my house. My nervous system can't handle anything but pure calm. Somebody else is going to have to take on the lawn mowers and the planes.
But the reality is no one else cares. They're all too busy. They're running around in their cars, in their loud cars in their busy lives with their windows closed. I'm sorry, (lol) here I go getting all self-righteous and riled up. I'm sorry. All right, let's bring it back to the grand point. The point of this story is lamentation. It's grief, grieving the loss of the natural beauty of quiet. That reminds me.
A couple weeks ago, I told you guys I was watching a show called “Severance.” And it turns out Severance is more than my nervous system could handle. It's a fascinating but nerve wracking show. I watched the season one finale. It was a pretty high stress episode. There was so much going on — this music that would go “boom boom boom boom” and a chase scene and so much intrigue. I started having a very nervous feeling halfway through and rather than stepping away to calm my nervous system, my eyes were stuck on the screen and I watched it all the way through, while my whole nervous system was shaken apart. I had a crash that evening — a devastating, life altering crash. It's just not worth it. It was so fun for just a little while. I love that show. I love those characters, but my nervous system couldn't handle it.
So I've given up the second season of Severance in favor of a live YouTube stream of a pair of American bald eagles raising their two little babies in a nest high above the big bear valley in the San Bernardino mountains of Southern California. Apparently, the nest is about 145 feet up in a Jeffrey pine tree. It's the home of “Jackie” and “Shadow,” the local bald eagle pair. Actually, I've only tuned in twice, but it really had an impact on me.
Just a few days ago, I decided to check in on the birds. And within moments, I just began weeping. It touched me so deeply. I began weeping from the beauty and from my disconnection from the beauty of nature with this illness. They just show this beautiful shot of this incredible nest, I mean, a nest built by the bald eagles and then the mama bird sitting there in the middle, so proud and regal. And off in the distance, you can see this river way down. I mean, this nest is high up in the tree and way down there you can see the river. And I just wept. I wept and I wept and I wept some more. It was all part of my lamentation.
And I guess that's what this all comes around to… is the weeping, the grieving. I think of this post as a kind of crying out to the earth and all the wonders of nature, for beauty lost, the mystical wonder of silence. There's a reason for my weeping. There's a reason for all of our weeping. The quiet, majestic, holy, sacred sounds of nature are in danger… all because we humans think we know what's going to make us happy. Whatever the cost, trying to get more done, get it done faster, get it done bigger, thinking we know the thing that's finally gonna satisfy us.
I think about all the damage I did in my futile search for trying to get what I wanted. You know, I'm no different from those people flying those single engine airplanes around town trying to have a good time. They're just trying to live their lives, trying to enjoy their lives. I'm no different than the people cutting their lawns with the gas powered mowers. I did it for years. In fact, I still own a gas powered leaf blower. Man, that thing is efficient. It gets the job done fast, but it's loud and I miss the old sound of a rake sweepin’ the leaves. “swish, swish, swish.”
Yeah, there's lots of reason to grieve and this is my lamentation. With this highly sensitive nervous system, my brain craves quiet. It craves natural stillness. It craves bird songs and breezes and flowing rivers and bubbling creeks. But I'm no different. I'm no different than all those people making the noise out there just trying to live their lives. I just get to see the insanity of it all, lying here in this bed. Everyone's moving so fast.
But the earth is so resilient, isn’t she? Spring after Spring, she keeps bouncing back. I haven’t seen ‘em yet, but I keep hearin’ about the daffodils and the primrose. Maybe today is just another day for praise and thanksgiving. Let’s raise up the windows. Let’s swing open the doors. Let’s shout songs of love and forgiveness to the single engine planes flying overhead. Yeah. We can circle up and bow our heads to the beauty — the beauty that never gives up… never gives in.
“rrrrrrrrrr” Here come the planes. Here come the planes. (lol)
Ahh… I think that'll be it for today. “Lawn Mowers in the Sky, a Lamentation.” Go out and enjoy some beauty. Go out enjoy some beauty today. Breathe that fresh air and listen to the breeze through the trees. Thanks so much for stopping by. Thanks so much for listening. It means a lot to me.
All right. Have a good day. Have a good week. Remember… you've got a body. Go live in it. Enjoy living in it. Enjoy the breathing and the eating and the being. Alright everybody. I'm going to bed. Have a good night. See you next time. Bye bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Quality of Life
I've been thinking about quality of life lately. I read something about it on the internet once. It was a statistic about the quality of life of people living with a variety of chronic illnesses. I remember it said that people living with severe ME/CFS had the lowest quality of life of all the major illnesses. That's the one I live with, myalgic encephalo-f*g-myelitis. Yep..the severe version. I share this statistic with you, not as a fact, not as something I've researched, but as something I read on the internet once. (lol)
I laugh, but it's not a laughing matter. I've lived it and I've heard the stories of people that tell me it's probably true. This illness is a beast and it's brought people to the lowest quality of life you could imagine. Searching for it now, it looks like it was a Danish study done years ago. It concluded that the quality of life of ME/CFS is significantly lower than the population mean and it’s the lowest of all compared conditions.
That statistic stuck with me all these years. It hung around in the back of my head as the scary truth. I never would have imagined that I'd have to someday live it. But now here I am, mostly bed bound, sicker than ever and I have an urge to defend my life against that statistic. I want to be the one to prove they were wrong. So I ask, what is it that makes a quality of life?
If you've been hanging around here for a while, you already know I've been living with ME/CFS for many years, since 1991 and I lived a very full life and I always knew in the back of my mind this statistic. I knew about the people living with severe, living in the dark, unable to leave their bed, unable to eat, unable to speak, unable to take visitors, unable to turn over in bed. I knew about these people, but I went on and lived my full, vibrant, active life with mild to moderate symptoms, always pushing the boundaries, thinking somehow I was invincible.
My quality of life was fairly good looking back. On the outside, I had everything. From where I lie now, I had nothing to complain about. But I struggled on the inside. On the inside, I was striving for more, grasping for more, hungry for more, unsatisfied. I carried around a low grade sense that it's just not enough. On the spectrum of qualities of life, mine wasn't as good as it probably should’a been. As the title of this episode says quality of life is an inside job. I believe it.
As my illness has become more severe, as my limitations and my disability become greater, I'm interested in the idea of my quality of life actually improving during this time. Like, as the symptoms get worse, the quality of my life actually goes up… kind of like my friend Emma. We'll hear from her in a minute.
Watching the quality of my life improve through worsening illness is a fascinating challenge to me and I know it's an inside job. It's all in how you look at it, right? What really is quality of life? Is it being able to have all the things I want? Is it being able to do all the things I want to do? Go all the places I want to go? Eat all the foods I want to eat? Buy all the things I want to buy? Have just the right combination of family, friends and community? What is quality of life?
I'm sure there are all kinds of studies. I'm sure there's a whole encyclopedia article on it, but I gave away my encyclopedias years ago. So I'm just riffing a little bit here on the concept of what is quality of life. I ask you, what defines your quality of life? What improves your quality of life?
I asked my girlfriend Emma what quality of life is for her, and she gave the answer that I wanted to give. She said it much more eloquently than I could. So here's Emma Kitchen. She's been living with severe M.E. for many years now. And if you can't tell by her accent, I'll let you know she's from Warwickshire. Warwickshire in England.
Hal: Good morning, my dear Emma, beautiful weather today, is it not? So what's the quality of life in Warwickshire?
Emma: Good morning.
It was such an interesting thing you said about quality of life yesterday. I just wanted to comment on it because I was thinking… quality of life for me is about connection to my source, that - kind of like - my divine being, where there's that, that flow of energy, which feels like complete contentment, a very like subtle joy, just this feeling of being complete and whole and there's no needing in it. There's no wanting. It's just it's full and it's beautiful. And I feel sure that this is what is meant by the word love.
Because it holds everything and it holds everyone and it's at the source of everybody's experience once the noise of the mind is quieted. And I find that in my life, before finding this, or even now when I'm looking outside of myself for activities or something I think I want or need, to have quality of life in a human egoic sense. You know, what can I do to make my experience better? What can I have to make my experience better? Who can I know to enrich my life and make me feel good about myself? All of those things I find are poor substitutes and they never last. I'm always left wanting, even if it's their most fullest, richest, explosively, wonderfully joyous experience in that moment. It never stays that way, and there's no solidity there. There's no ground there. There's nothing to rely on because everything is always changing.
And I feel like once I have something that I think I want which will bring me quality of life… like I’ve got a mobility aid, this bike that I bought, a walking bike. And I was like, “Yeah, I'm going to get this.” I spent all of my savings on it. It was a big purchase for me. And it came and I had all these visions of how it is going to improve my life, and I've been to unwell to use it. But even when I got it, like the moment I got it, the thrill had gone and I was immediately looking for the next thing to improve the quality of my life. What's the next thing?
Do you know what I mean? And then I got a mobility scooter. Yeah, wonderful, it's brought me enrichment. And I definitely see that. But, yeah… it's on so many different levels, isn't it? Like, on a human level, I definitely have enrichment from having a mobility scooter. But I think for me, quality of life always just comes back to how connected to that divine stream of Source Energy am I? Because that can't be taken away, and it can only be deepened. My experience of it just only deepens and deepens and deepens and it doesn't matter if I can't go out on my scooter for relief, to improve the physical quality of my life by getting me outside the house, by letting me meet strangers and have little conversations, although that is a huge enrichment in my life, When I can't, the days that I can't go out, which are more numerous than the ones that I can, there's there's no disappointment or sadness there, because I tap straight into the beauty of what is, and I'm full.
So yeah, absolutely, for me, quality of life is dependent on being connected to source, and I think that's one of the biggest… well, it changed my life. It has changed my life. It's revolutionized my life. And so, yeah, that's all I want to say. Anyway
Hal: Thank you so much, Emma. That was really beautiful. You basically said what I wanted to say — more eloquently, though. I am left speechless. Let's see. What else could I possibly add to that? Hold on. I'll think about it.
Here's what I'm gonna say.
Quality of Life is a judgment and it's my thinking that does the judging. So it seems to me that quality of life is based in a large part on my attitude, on my thinking. To what extent am I saying “yes” to this moment, to what extent am I smiling and loving what is — with all the discomfort, with all the things that I wish were different, with all the feelings, with all the imperfections and all the uncertainties, all the everything. To what extent am I smiling and saying yes to it all?
What is the quality of my being in this moment? To what extent am I welcoming all the visitors into my circle with love? To what extent am I practicing kindness and honesty and patience and generosity. That's quality of life. Quality of life is in the being. It's here and now. Quality of life is a practice. So even if I'm unable to go outside, even if I spend most of the day with an eye mask and silencing headphones on, even if I have limited human contact, even if I have non-stop loud ringing in my ears and debilitating weakness in my arms and my legs and a weird, prickly bubbling that's happening constantly in my belly, I can still be the guy with the best quality of life in Ohio. All just by resting with what is in this moment, with a smile, a cry and a laugh. (lol)
Is it true? I think I'm finding out that it is. Of course, there are a lot of days I'd resent myself saying all this. When the discomfort is so great, when I feel so alone and my brain is taken over by a scary, numb kind of fucked-ness, when my nervous system is so out of whack and it takes on a nightmarish kind of hijacked life of its own and I can see nothing but decline in my future. There have been times when the discomfort is so great and I can't believe that this is really my life.
But even then, I keep coming back to the smile. I keep coming back to the surrender. I keep muddling through and something changes. And here I am now in a mood, trying to prove that even with these circumstances, the quality of my life is the best ever.
Let me also say this. I'm a white man who has money in the bank, who has two wheelchairs, a stair lift and a full time caregiver, who owns his own home with a beautiful front porch in a relatively quiet neighborhood. My needs are well met. In the realm of Maslow's hierarchy of needs, I'm doing quite well. I know everyone doesn't have this kind of privilege and I know it has a profound impact on my quality of life. In the material world, I'm a blessed man. So keep that in mind as I'm saying all this stuff. You know, I'm able to lie in this very peaceful place with a window, the sun shining through the window, exploring the inner world of Hal Walker, the inner world of beyond Hal Walker, the inner world of not-changing-anything, I'm more and more convinced that the quality of my life is directly proportionate to my ability to rest in what is. My ability to be still and listen for that voice of God.
You know, I can see the blue sky right now. The birds have been starting to sing lately. I could hear the geese flying by my house earlier today. And yesterday, I was able to sit on the back porch and watch three cardinals playing in the pine tree. There's peace in my town. There's peace in my room. There's peace in my home. If you ask me, that's a pretty good quality of life.
65% of me, maybe even 75% is grasping for nothing, just soaking in the contentment. I wish the same for you. Thanks so much for being here. Thanks for listening, thanks for reading. I really appreciate you.
Hey I think that's it for today. Don't forget, you've got a body. Go live in it. Wherever you are, whatever your circumstances, practice saying yes. Practice smiling and saying yes and loving every minute of it. Then watch what happens to your quality of life. I wish you well. Enjoy Saturday, enjoy whatever day it is. I'll see you next time. All right.
Signing off. I love you. Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” Click PLAY above to hear the intended PODCAST version of this episode with original music. (16 min. listen) Find the full transcription below. Enjoy! Hal
Your Birthday
It's my birthday next Wednesday, March the 5th. I'm turning 59 years old. Yeah… I know. I was always in my 30s… or in my 20s. I was always the younger guy, but now I'm the older guy — 59 years old.
I was talking with my sponsor and I was feeling a little bit sorry for myself. We call it self-pity. I was saying, “You know, I don't have anyone to invite to my party. Two years ago, I had a really nice gathering of friends, but I’m sicker now and I’ve lost touch with so many people and all my friends have abandoned me and… uhhh… boo hoo. Maybe I’ll just have my family and my girlfriend on the Zoom call.” Which will be wonderful! But there was a tinge of self pity in my voice.
And my sponsor said, “Hal, do you know when other people's birthdays are?” And I said, “Well, not really.” And he said, “Why don't you spend some time paying attention to other people's birthday? You know, send a greeting to other people on their birthday.”
And that shook me up a little. It shook me up a little bit and it opened my eyes a little bit. Yeah! That's what I wanna do. I wanna pay attention to your birthday. When's your birthday? I want to send a card to you on your birthday.
I sent a letter in the form of a homemade card to my niece the other day and I can't tell you how satisfying it was. I created a little watercolor, I rubber cemented it to a nice brown folded card. I wrote a full page letter in there. All together, it took about 30 minutes. Then I folded up a $20 bill to put inside. I sealed the envelope, wrote the address on it, wrote the return address, put a stamp on it, and put it in the mailbox. And this action was the best action probably of my week. I thought, “This can be the purpose of my life. This can be the new purpose of my life, sending cards to people, wishing them all the best on their birthday — sharing a little bit of myself, asking them about themselves.”
It's really an eye opener. You know, It’s not all about my birthday, my birthday. “What are we going to do for my birthday?” (lol) No, it's your birthday that I'm interested in. Please send me your address. Send me your birthday. I'm compiling a database and this is the new purpose of my life. (Click the link below to give me your mailing address and your birthday so I can send you a card. Thanks!)
I had a moment this morning of questioning. “What is the purpose of my life?” I spend so much time meditating and I was looking forward to seeing Emma (my long distance girlfriend from England) at 11:30, but I hadn't heard from her. So I wondered, “What if I don't get to see her at 11:30? Then what do I do?… And what is the purpose of my life? I got no projects I'm working on. I can't go clean the house. I can't go for a bike ride.” You know, I'm not writing a song. I'm not practicing an instrument.
What I'm doing is practicing awakening. I'm practicing stillness. That's been my purpose — is practicing stillness. And it can get a little bit old after a while. Believe it or not, it can almost get boring. The amount of stillness I got to practice! I mean, come on, I want to have a little fun! Emma reminded me that is what the purpose is. I can't remember how she said it, but it's to awaken, to awaken from the dream of the self. That's my purpose…to awaken and to write cards, write letters, celebrating other people's birthday.
And when I think of it that way, it's quite satisfying. I mean, I can't tell you the amount of satisfaction I got from the complete process of sealing the envelope, writing the address, putting the stamp on there. I got a whole stack of stamps in my drawer right next to my bed. It was so satisfying. Now, all I need is some addresses and some birthdays. So please send me yours.
On a similar subject. You know, I go to this meditation, this online meditation group called Meditate-Together, and after the 20 minutes of silence, there's a topic for sharing. And every once in a while, the topic comes up, “What role does compassion play in your meditation practice?”
And what I've noticed is that it's often very silent. It's often very quiet. From what I can see, people aren't sure how to approach that question, the question of compassion. This might just be the judgmental part of me, but I'm thinking “all these meditators…” no, I’ll just talk about myself. I'm a self centered meditator. (lol)
You know, I'm mainly meditating to save my own life. I'm meditating so I get to be awakened, so I get to be enlightened, so I can have less suffering. I'm meditating so I can survive this devastating illness. It's all about me. It's not about other people.
Compassion is about other people. And generally, the people that chime in with their answer of what role compassion plays in their meditation. Generally, they refer to self-compassion. They say, “Well, for me, it's mainly about self-compassion.” And self-compassion is great and all. I'm happy for you. I'm happy for you. (lol) I'm happy for you that you've got self compassion. We all need that. I mean, loving myself. I don't mean to joke about it…
Loving myself is something I do fairly well. I mean, I often say very loving things to myself. I kiss my knees. I caress my face. I hold my hand on my heart and say, “I love you. Hal, I'm proud of you. You're doing a great job. I'm sorry it's so hard.” Self-compassion is a good thing.
But what about real compassion? I mean… normal compassion. In the encyclopedia, they say compassion is… “sympathetic pity.” I didn't like that one so much.
Compassion definition… I like this one, “sympathetic consciousness of others distress together with a desire to alleviate it.” Consciousness of others distress. Sympathetic consciousness of others distress together with a desire to alleviate it. And we all have distress, everyone of us. But I don't think about others distress that much to be truthful. I mainly think about my own distress.
But you know, my 12-step program is all about helping others. It's all about being of service. Gratitude, sobriety and service. Where can I serve? Whose birthday is it? Whose birthday is it today? And how can I make their day by sending them a birthday greeting in the mail? It's not all about my birthday anymore.
Anyway, around this meditate together question of, “what role does compassion play in your meditation practice?” I got to be honest…
I mean, I hope that my meditation practice, all my spiritual practices… I'm hoping they're making me a more loving person, a more available person, a more caring person, a more present person.
You know, in my little corner of the world, I'm practicing stillness. I'm practicing quiet. I’m practicing presence, so that I can do no harm and so that I can grow and learn to be compassionate. But as I said before, compassion, b eing compassionate has not played a major role in my thinking.
As opposed to my friend Annette, who volunteers at the food kitchen practically every day, stirring rice and cutting vegetables. That woman is compassionate. She cares about others deeply. She's a Quaker. Quakers are really good at compassion, I think. And I'm sort of a new Quaker. So I'm just learning about it. (lol) I've got an excuse. I'm just learning about compassion.
You know, I had a Unitarian over here today, Marion, and she's very compassionate too. She reminded me… I asked her what role compassion plays in her life and she talked about being kind and generous to people of all different backgrounds that she comes across during her day. She feels that as she's gotten older, she's become more compassionate. Yeah, I think I've become more compassionate too, but I don't get very much chance to see people in my day to day life. But I definitely have my chances to practice compassion.
Tell me, what role does compassion play in your life? I’d love to hear.
Anyway. There's one more thing I want to say. I'm watching this series. I went months and years without Netflix, without Hulu, without Apple TV. Years. And I didn't miss it. But recently, I discovered a series and I'm hooked.
So I finished “Nobody Wants This.” It was only 10 episodes and I finished it in 10 days. And then my daughter turned me on to this new one called “Severance.” It's a wild one. It's kind of mind boggling. And a little bit, um…what's the word… kind of… not spooky… but twisted…and a little bit… what's the word I'm looking for?… A little bit… dark, and… uh, I can't think of the word I'm looking for. I'll find it later.
Anyways, “Severance.” One episode a day. I'm not gonna explain the whole story to you, but basically, it’s the workers of the Lumen company. They go into work and while they're in work, their life brain is removed, and they know nothing but their work life. And then they come back out of work, and they're back into their normal selves, but they don't remember anything that happened at work. It's a fascinating story. I'm really having a lot of fun watching it. I think I'm on episode six now.
Anyway… earlier today, when I was questioning the purpose of my life, I thought, “Well, I got that episode of Severance to look forward to later this afternoon.” That didn't feel so good thinking about a TV show being one of the main things I was looking forward to. I thought, “Oh boy, that's the new purpose of my life that I get to watch an episode of Severance.” But I gotta say, it's a really fun escape for 50 minutes for this growing more compassionate all day meditator.
Then during one of my meditations, I heard Thich Nhat Hanh say, “Breathe in and smile, breathe out and smile at everything, including the difficulties.” Then it reminded me that that's my work today, to breathe in and smile. My work is to smile in my little corner of the universe and maybe that smile will spread out to the whole world. And here I get to write say these words to you. Maybe you'll smile and maybe you'll send me your birthday and your address so I can send you a card.
Of course, if I get 1000 addresses, it'll be a while before you get yours, but YOUR birthday. The episode is called YOUR birthday, not MY birthday. When's YOUR birthday? I want to pay attention to YOUR birthday. I want to be there for you on YOUR birthday. Interestingly, the thought of celebrating YOU makes me so happy. I'm done thinking about my own birthday party. It's you I want to celebrate. You, yeah you! I can't wait for your birthday. (lol) Sounds funny.
Okay, I think that's all I got to say, everyone. Thanks so much. Thanks for being here. Thanks for listening.
Hey, guess what? Remember that body of yours, it's so beautiful. It's so beautiful and it's not going to be here forever. You're not going to be young forever. And if you're old, you're not going to be old forever. You're just going to get older. (lol) You're just going to get older. You're going to be older than old.
So take advantage of it today. Whatever you got! If you're in the bed, move your toes. Enjoy the movement of your toes. Twist your ankles. Enjoy the twisting of your ankles. Kiss your knees. Enjoy the kissing of your knees.
Thank you. I can't wait to celebrate your birthday.
All right. See you next time.
Bye, bye. H
Get full access to Living in a Body at halwalker.substack.com/subscribe
A Day in the Life
I haven't left the upstairs of my house in a while. It's been at least a week.
Thank God I have a caregiver that brings my food up from downstairs.
I will report that my symptoms are as severe as ever, the most severe they've ever been. But my spirit is well. My emotional health is well. My mental health is well.
It's not easy, but I keep adjusting. I keep taking it as it comes and finding ways to get through a day. In this episode, I wanted to let you in a little bit about a day in the life, how I get through a day… just in case someone finds themself in this position and needs help figuring it out from someone who's been there. Believe me, I've been there.
This morning. I woke up at 4:30. I don't get out of the bed until seven, so it was a little disappointing knowing that I had about two and a half hours to kill. So I did some laying there, or would it be lying there, practicing calm, practicing smiling, practicing welcoming it all.
Actually, the first thing I do in my when I wake up is pray. I get on my knees there on the bed, and I mumble a few prayers. I say, “God, take away the fear. Take away the self pity. Thank you for this day.” You know the spiritual aspect of my life is really my only choice. You know, mostly, most of the worldly things have been taken away. So I'm focusing on the inner life, the inner life of the Spirit. So I pray and then I ride my wheelchair, my sweet Matrix wheelchair, over to my daytime bed. I am greatly privileged in the realm of resources for chronic illness — two sweet beds, a daytime bed and a nighttime bed.
And my caregiver has it made up real nice. So it's fresh. It's a fresh bed. And I get into the fresh bed in the morning. It's cool, it's crisp, and I climb in under the covers, I turn on the light, and I open up the 24 hours a day book. This is the spiritual guide for my 12 step program. It's a great book. I've really come to love it. Today was February 21st.
“I will be more afraid of spirit unrest, of soul disturbance, of any ruffling of the mind than of earthquake or fire.” This book takes this stuff seriously. It takes the inner life seriously, “when I feel the calm of My Spirit has been broken by emotional upset that I must steal the way alone with God.
I will try to keep calm no matter what turmoil surrounds me,” and I add what turmoil is within me in this body, “I pray that I may keep a calm spirit and a steady heart.”
You know, living with this MECFS ridden nervous system, maintaining calm is a full time job. That's what I spend most of my day doing. Essentially, to survive these very challenging circumstances, is to maintain a calm spirit and a steady heart.
After I read the 24 hours a day book, I read the “Just for Today” card.
It is a card that people in my 12 step program read. It's nine “Just for Todays.” For instance, “Just for today, I will live through this day only and not tackle my whole life problem at once. I can do things for 12 hours that would appall me if I had to keep them up for a lifetime.”
That's a helpful one to read first thing in the morning, I regularly wake up with a kind of dread, like, “oh god, oh my God. Not this again, not this life again.” And then I turn to that first one and I think, “oh, all I have to do is one day, just 12 hours.”
I like this next one. “Just for today, I will be agreeable. I'll look as well as I can dress becomingly, talk low, act courteously, be liberal with praise, criticize not one bit, nor find fault with anything and not try to improve or regulate anyone but myself.”
That is some good st. That is some good st, man,
“I will not try to improve or regulate anyone but myself.”
What a relief, what a relief that I'm not in charge. Everyone just gets to make their own crazy. They get to do their own crazy, or their own whatever they're doing.
You know, my daughter gets to be herself. My girlfriend gets to be herself. My mom gets to be herself. My sisters get to be themselves. Mango gets to be himself. I don't need to improve or regulate anyone but myself. What a relief.
This is a beautiful one. This is the last one I'll read just for today. “I will adjust myself to what is and not try to adjust everything to my own desires. I will take my luck as it comes and fit myself to it.” (lol) Nice. That one works so well for me. It's like I got some rough luck, but I'll take my luck as it comes and fit myself to it.
“One more. Just for today, I will be happy. Most people are as happy as they make up their minds to be. Happiness comes from within and is not a matter of externals.”
So just for today, I will be happy. Just for this moment, I will be happy. Create a little joy on the inside. I remember I used to give assemblies in elementary schools, and one of my favorite things to do was to challenge the students to create joy.
I challenge you now. Create some joy with me.
Breathe. Smile. Bring the joy up from the depths. Let the joy shine in your eyes. Fill up your whole head with joy. Put a little joy in your mouth. Make the inside of your mouth a smile and then do it all day long. That's what I do, except when I'm crying.
After I read those two pieces of literature, I have a half hour of quiet time. I put an eye mask on. I set my bed in the “zero gravity position” and I spend a half hour of time with the Source of all Being. Just quietly resting, quietly resting in the Presence of the Source of all Being.
Right after quiet time, the bell goes off, and Mango brings me my broth. I have eight ounces of chicken broth and it is so soothing. It's so soothing. It's so soothing on my racked nervous system, on my racked digestive system. It's so soothing. It feels so nourishing. It's nourishing and soothing and gentle and kind on my body. It's one of my favorite moments, sucking down that eight ounces of bone broth.
Little bit later, he brings me my 8 ounces of yogurt and a banana. That one tastes good. It's almost like starting the day off with dessert.
And then at eight o'clock I hop on to “Meditate Together” for a 20 minute meditation.
This is what I do all day long. Every hour on the hour, I'm meditating for 20 minutes. I think that's what's that's what's helping me survive — having a structure. I love having a structure. Even though I'm in bed all day, I barely leave the bed, I have a structure to my day. I recommend it.
For this first eight o'clock meditation. I do a Transcendental Meditation where I repeat a mantra in my brain.
And then at 8:22, the leader of the online meditation offers a prompt for discussion and we share honestly. They say, “We’re creating a safe space for listening and sharing, sharing honestly. And I don't remember what the prompt was this morning, but it might have been something like, “since it's Friday, what's something you'd like to celebrate from this week?” Or something like that. And I get to meet with this little community of people, meditators.
Then at 8:30 I hop right over to the Quaker Meeting for Worship. It's out of Pendle Hill in Pennsylvania. Seven days a week, from 8:30 till 9:10, we sit in silence, and when the spirit moves, people speak out of the silence or sing out of the silence. I often cry. I often weep from the beauty of the sharing. It's such a beautiful gathering of friends…of Quakers. And the things that come out of their mouths are just so led by the Spirit. Morning after morning, I'm reminded of what's important.
Sometimes I'm too sick to have the light on, but I love the gathering of friends. And every once in a while I speak. Every once in a while, my heart starts pumping a little bit, and the spirit moves and I share something.
I've never been there, but Pendle Hill is this gorgeous Quaker retreat center outside of Philadelphia. If I could live my life over again, I'm certain I would have done several residencies there and written the book there, made a CD there, written a whole bunch of songs there. I love retreat centers. I love retreat retreat places, and especially one that has Quaker Meeting for Worship every morning in the barn. Yeah, that's what I want.
Then at 9:15, I call my sponsor and I share all the things that I don't want to share. You know, I get honest. I talk about the deep inner workings of my brain and I ask for help. I ask for help on how to how to live my life on the spiritual path. I have a very wise, very kind, very gentle and loving sponsor and I feel very fortunate. I feel like I found a home with a sponsor. I could imagine him being my sponsor for the rest of my life. We talk seven days a week. I'm truly blessed.
Then at 9:30, it's breakfast time. After sometimes I'll make a call. I'll make a phone call to one of my fellows, but then before 10 o'clock, I've got to have breakfast. I've got my oat bran and my eggs and my butter, a tablespoon of butter in the one ounce of oat Bran and two eggs.
Then 10 o'clock rolls around. This morning, I did my second meditation at “Meditate Together.” Often, I'll have a 12 step meeting at 10 am or sometimes.
So that's my day. Every hour, on the hour, I'm meditating.
And this week, my long distance girlfriend Emma Kitchen (who I met here on Substack) and I have found a wonderful rhythm. One thing about being in a long distance relationship is you got to find a rhythm. You gotta find a rhythm for contact. And Emma and I have found a really great rhythm that works.
We'll always start the morning with a voice memo. Emma's in England, so she wakes up much earlier than I do. So the night before, I'll leave her a very loving voice memo on WhatsApp and then I wake up to a loving voice memo from her.
You know, I can't necessarily recommend long distance relationships, but we're really finding a nice way to do it. So here are the instructions. (lol) In case you're looking for some — a loving voice memo at night, a loving voicemail in the morning,
By the way, please don't forget that all morning, all day, I'm very ill, severe symptoms of ME/CFS. I mean, I haven't mentioned that yet, but very ill, very weak, deep weakness, deep illness.
But then at 11 o'clock, I take a quarter milligram of Ativan, a half pill. It masks the symptoms a little bit and then I get on “Meditate Together” for a 20 minute meditation, allowing that Ativan to sort of settle in. And it really helps. It eases up my symptoms a little bit. It masks the symptoms just a little — a quarter milligram,
And then with this great rhythm that Emma and I have found is at 11:30 we meet from 11:30 to noon, and we laugh and we talk and we say funny things. Sometimes we say sexy things. We smile. We say things like, “Oh, hey, beauty.” And she says, “Hello, handsome.” I'm not going to go into too much more detail, but it's just been a really great half hour.
And then at noon, I'm back onto the meditation for another 20 minute meditation. And probably for that one, I just rest in the mess. You know, I close my eyes and I rest in all of it. I rest in the thoughts. I rest in the sensations. I rest in the feelings. And then 20 minutes later, we've got another prompt to discuss among the Meditate Together community.
So I'm well supported in community. I mean, that's one thing. I have found resources that are getting me through this. I am not lonely. Even though this illness is a painfully isolating illness, I'm finding ways to not isolate. And I think it's saving my life.
Then at 12:30 mango brings me my lunch. I've been eating brown rice, and today I had tofu and brussel sprouts. Really good salad. Mango makes a great salad with red cabbage and carrots and sauerkraut, avocado and cucumbers and tomatoes and greens, and then apple cider vinegar and oil. It's a really nice salad. I love it.
And then one o'clock comes, and guess what, it's time to meditate. (lol)
But on Wednesdays, I do a Quaker sharing. There's a wonderful group out of California that someone brings a quote, and then they have queries, and we sit in silence, and people speak out of the silence to share on the query. That's all I'm going to say about that. But just emphasizing that I have found community online and that's another example of it.
So continuing the wonderful rhythm that Emma and I had found is at two o'clock we share a daily meditation reading out of this book called The Journey of the Heart. And we'll read the day's meditation. Then we'll share about it. We'll share our thoughts. Today, It was all about love. Here, let me read a little bit of it.
“Let love be you can't control love. It's impossible. We've learned to let love be and be open to what that is in the new direction it may lead us. And love is a powerful, living force that permeates the universe and funnels through us. We don't lead it. It leads us and guides us.”
So we use this reading as a kind of jumping off place for a conversation. I practice being present and listening and sharing vulnerably with my friend. I've really been appreciating that. It's been such a joy to get to know Emma this way, even though we're separated by an ocean.
Well, this has taken too long, so I'm going to cut it short.
I take my second quarter milligram of Ativan at about four o'clock. I'm thinking that I'm gradually going to be titrating off of Ativan. So little by little, I'll take those half pills and make them smaller and smaller. I'm not looking forward to it. It's really quite scary. It's basically going to force me to face the reality and the depth of my illness and the reality of my limitations, which are very severe even with Ativan. But I'm not in any hurry. I'll let you know how it goes.
All right, we're gonna wrap this up and move along to five o'clock when I watch my show. I've been watching a show. It's called “Nobody Wants This.” And it's a fun show. It's a half hour show on Netflix, I watch a half hour a day. And it's about a rabbi and the non-Jewish woman having a love affair. And it's funny. It makes me laugh.
It's interesting. I have very little media in my life. I don't look at the news. I don't look at Tiktok and Instagram or Facebook. So this is my little indulgence into the world of Hollywood and beautiful people.
And then I have dinner,
And then I get to bed early. Around eight o'clock, I take my wheelchair over to the nighttime bed, brush my teeth, floss my teeth.
And I've been reading this wonderful trilogy by Frederick Backman. The first one was called “Beartown.” The second was called “Us Against You.” And the one I'm on right now is “The Winners.” It's a great book. It's a great trilogy. Frederick Backman is a master of writing. You know, I've written a few good essays, but writing a novel, writing a trilogy like this, the way he weaves everything together. By the way, it's narrated by Marin Ireland. I'm listening to it on Audible. It's just such a great story. I'm really enjoying it.
One thing you'll notice I don't do very much of is writing or creating. In the half hours that I'm not meditating, I'm mostly just resting. I was inspired to break out some water colors today and try to make a card, but just the setup alone was more than I could handle, so it'll have to wait till another day.
All right, everyone, it's time for me to be done that went on a little too long. Thank you. Thank you for caring enough to listen. It's been a really rough path. It's been a rough road. But as I said, in my spirit as well. Emotionally, I'm well. I'm finding ways to get through.
I miss you. Miss seeing you. I miss being out in the world like crazy.
So take advantage of it for me. Hey, go skipping today! When's the last time you skipped? If you're able, please for me, go outside or in your hallway and do a few yards of skipping and smiling. And then report back in a comment. Let me know how it went. Everyone do a little bit of skipping today.
When's the last time you skipped? If you've got a body that can skip, you must go out and skip. Please! For me.
Thank you. Enjoy living in that body of yours. It's not going to be around forever.
I love you.
Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
In the Eye of the Storm
I've been up since about 2:30 this morning. At night, I take three milligrams of melatonin and that usually puts me to sleep pretty well. But every night, I wake up at about two o'clock in the morning or 2:30 or three, and I usually take a half dose of ZzzQuil in a liquid form and I found it works real well. It puts me out for the rest of the night ‘till I wake up at about seven o'clock.
But last night, as I was getting ready for bed, I realized my bottle of ZzzQuil was empty. So I said, “Okay, God, just you and me tonight and that three milligrams of melatonin.” So that's what I did. I fell asleep fairly easy and at 2:30 I woke up and I pretty much knew that that was it for the night. I was too ill to fall back to sleep, so I settled into that more and more familiar mode of “welcome it all.” Hours and hours of welcoming it all. And I'm going to try and tell you what I mean by that.
I recently heard a story about bison or buffalo. I don't remember exactly how the story goes, but what I recall is that bison are the one animal that when there's a storm coming, they run toward the storm. They run toward the eye of the storm and somehow they find peace in the eye of the storm. Rather than running away from the storm like all the other animals and all the people, they run directly into the storm and they wait there.
And that's kind of what I've been practicing in my meditation practice, not perfectly. I got a long way to go, but it's just an intention I have as I enter my meditation is to go into the eye of the storm, to welcome it all, to find rest, to find peace within the mess of all that is. And believe me, living with ME/CFS, when I say all that is… when I talk about the mess, it's a lot. It's a messy, messy internal world.
Loud ringing in my ears. Burning weakness in my belly. Aching weakness in my arms and legs, overall sickness, deep illness. (lol)
Sometimes on this podcast, I make it look kind of light and I make it sound funny. It ain't funny, my brother and my sister. It ain't funny. It's a lot of suffering. Your friend Hal, the old folk charmer. Whenever you get a minute, send a little prayer my way and say, “I hope he's making it okay today.” Because this illness is a — oh, what was the word I used today, when I sent Cameron a text, I said, “Cameron, it's a grueling illness, but I keep going.” It's a grueling illness, but I keep going. Grueling is a beautiful word. It's a beautifully descriptive word for this illness.
You know, the nice thing about those Buffalo is they run to the eye of the storm and then they wait it out there in the middle of it all. And then the storm passes and the blue skies open up. The blue skies open up — those Montana skies. Yeah, those Montana skies. I've never been to Montana, but I I can imagine those Montana skies. I don't even know that's where Bison live, but that's the first thing that came to my mind is those Montana skies. They open up — big, wide, open skies. And the Bison get to just lay back in the sun, in the blue, and soak it all up.
ME/CFS doesn't really work like that. It's more like the storm never ends. You stay in the middle of the storm. You stay in the middle of the chaos. You know, I certainly have my moments. There are moments that are better than others, but I'm still waiting for that Montana sky to open up. It may not be in this lifetime or it may be. You know, maybe little by little, that inner sky, that inner sky is opening. That's what I'm looking for is the inner sky, that inner Montana sky. Yeah, I can feel that right now, the inner Montana sky.
So I got to let you know I have a fairly robust meditation practice. So much of the doing has been taken away from me. I've spent my life as a human doing, a human project-maker, a human creator, and most of it's been taken away. I'm mostly bed bound. I have very little capacity for doing, but the one thing that has not been taken away from me is meditation.
You know, the inner life will always be there and I'm grateful for that, because fortunately, thank God, I have an interest in the inner life. I have a much greater interest in the outer life. (lol) Believe me, believe me. I love the outer life, but the inner life has not yet been taken away from me. So here we are.
And it's times like last night when I was up for six hours meditating — or four hours, that I realized all that practice came into good use. I spent the night with my eyes closed. Just looking around at the internal world. Watching things rise and fall. Watching things come and go and smiling, essentially smiling all night long. (lol)
It might seem strange. It might seem crazy, considering the extent of my discomfort and illness and wishing I were asleep. I laid there watching the inner world, and smiling. Now, I don't want to deceive you into thinking my life is all smiles and there's no reason to feel sorry for me. (lol)
Actually, that was a joke. I don't find people feeling sorry for me to be helpful. But there is that little part of me that wants you to know how hard this is. Sometimes, I'd go so far as to call it excruciatingly difficult. I don't really know what I want your reaction to be, but I don't want you to feel sorry for me. I guess I'm just here to tell my story and I want you to remember that this illness exists and that I exist over here on South Chestnut Street in this room, up in the second floor. I guess I wanna remember all the people living with this illness — isolated, poorly treated, barely diagnosed, many without the resources that I have to survive this thing
in the whole school of life. ME/CFS is one of the meanest teachers. Yep, that's the class I'm in. But you know, there are a lot of hard lives out there and it's the hard life that either destroys us or makes us transform. And I have a feeling that welcoming it all has something to do with the transformation. That's what I'm betting on anyway.
But I want to tell you about my meditation practice. I've joined an online meditation community called “Meditate Together” and it is a wonderful community. It's run by an organization called Mindful Leader. Mindful Leader and Meditate-Together were the brain children of a guy named Mo Edjlali and I am a big fan. Here's how it goes:
For $5 a month or $40 a year, there's online meditation every hour on the hour, led by a facilitator. Let me say that again. Every hour on the hour, you click a button and get on Zoom, and there's anywhere from four to 20 people there being welcomed by a facilitator, and here's how the program goes.
It's 20 minutes of meditation. The meditation begins about two minutes after the hour, and we have 20 minutes of meditation. It's basically 20 minutes of silence for you to meditate in any way you want. And then here's the beautiful thing. After they call you back in a very mindful way, there's an optional reflection time that lasts about eight minutes. The facilitator will ask a thoughtful and intriguing question about mindfulness or meditation and it's followed by an optional sharing time where people get to share honestly about their experience.
It's so beautiful and it happens 24 hours a day, every hour on the hour, except on the weekends. There's just a few sessions on the weekends. But sometimes I'm on there six or even eight times. I'm usually on there for three, four, six, or eight times, and I benefit greatly from it. Meditating with a community of people that I'm getting to know their faces and getting to hear their stories during the reflection time.
I'm just gonna take this time now to humbly suggest or recommend that you give it a try for a month. Bring “Meditate Together” into your life once a day. For a bed-bound guy like me, craving community, it's been a blessing and a game changer for my meditation practice. And for $5 for a month, you got nothing to lose. Anyway… back to welcoming it all.
During each of my 20 minute meditation sessions, I alternate between a couple different meditation techniques. One of them is Transcendental Meditation, which I learned a couple years ago, and have done consistently almost twice a day for the last couple years or so. It's a mantra that I was given and I repeat it over and over again in my thoughts. It's such a restful way to meditate. I don't have to think of anything. They say if it's easy, you're doing it correctly. It's so delightful to close my eyes and think, “okay, all I got to do is say the mantra”and I say the mantra over and over again, and I rest beneath that mantra.
But the other technique I use has been introduced to me by several people. My awesome English girlfriend, who I've mentioned several times, Emma turned me on to this guy, Jeff Foster, who does YouTube meditations. Jeff talks about “resting in the mess.” You know, welcoming it all. Welcoming the thoughts, welcoming the feelings, welcoming the bodily sensations. Welcoming the resistance to the welcoming. Welcoming it all and finding the rest, finding the peace. Allowing that welcome to create the peace.
Like if you welcome it all… that's my big challenge, is to find peace, in this body of chaos. And at those moments where I'm able to welcome it all like right now. I breathe. I welcome that discomfort in my lungs. I don't say “yay, welcome!” I just quietly say “hello, welcome.”
The ringing in my ears, I welcome. “Hello, welcome.” The tingling in my feet, I welcome. The thoughts that come my way, I welcome. The fear. That's a hard one, welcoming the fear. That fear is just so uncomfortable. Welcoming the terror. And this illness comes with terror. I carry around the terror of it getting worse. I carry around the thought of it getting worse and how much worse can it get? How much more suffering can I handle?
But I welcome it. Even welcoming the fear. Even welcoming the resistance to welcoming. (lol) Jeff sort of spins an interesting circle. But I’ve really found it to be a useful meditation. I just spent four hours this morning when I couldn't sleep, just lying there, welcoming.
And one important aspect of this is that there's no goal to the meditation practice. There's no goal to the welcoming. I'm not doing the welcoming so that I can get somewhere. All I'm doing in each moment is welcoming the moment and that's it and I'm done with it. Move on to the next moment.
So I invite you, as you go through your day today, go into the eye of the storm and welcome it all. Welcome the blue sky, welcome the snow, welcome the insane news that might be coming across your feed and all the feelings that come with it.
By the way, I gave up looking at the news. I gave up TikTok and Instagram recently, and also Facebook. And it opened up a whole bunch of space in my brain. It's much more peaceful in there without scrolling on TikTok looking at tragic plane crashes and insane new s**t happening by the crazies in office.
When my mom was asking me how I deal with it all, I said, “I mainly focus on the inner world. I mainly focus on the inner life.” And she said, “that sounds very self centered.” I'm not sure it is. I'm not sure. I think my best role in this world is to be at peace and to be a grounded, calm, loving, present, welcomer of it all. And I don't think that all the news I was getting off of TikTok and Instagram, my two main sources of news, (lol - don't make fun of me) I don't think those were helping me.
But man, I sure did want to scroll last night in the middle of the night when I couldn't sleep, but I didn't. I just laid there and welcomed it all. Welcomed it all. Welcome that nervous system on fire, welcome. Welcome the blaring of the ears, welcome. Welcome the thoughts, welcome the scary thoughts, welcome. Welcome, the resistance to the welcoming, welcome. Welcome to that voice that says, I don't think I can handle this, this is impossible to welcome. Here's one, welcome to the limitations and welcome to all the grief around the limitations. Welcome the angel that walks into my room whenever a visitor comes, welcome. Welcome my caregiver, Mango, who's so dedicated to me and so loving toward me, welcome.
Alright everybody, I think that's all the welcoming I'm gonna do right now. This was supposed to be short, and I think we're going on 20 minutes. (lol)
My daughter put out her first podcast yesterday and I loved watching it. She reminds me of myself. Hers is 32 minutes, so maybe I'll leave a link here. You can go check it out.
I love you. I love you and I miss you. I miss running with you. I miss walking with you. I miss riding bikes with you. I miss seeing you at the grocery store. I miss seeing you down at the river on the Riveredge Park. I miss seeing you at the Kent Natural Foods store. I miss seeing you at church. I miss seeing you up on the top of the 14,000 foot peaks, up in the Indian Peaks Wilderness in Colorado, in that huge field of wildflowers. It's rough man. I could start crying right now if I wanted to, but…. and I can welcome all that missing.
Hey, enjoy that body. Whatever body you got. Enjoy it today.
Enjoy the body today and I'll do the same.
And I ordered some ZzzQuil so I'm looking forward to a better night's sleep tonight.
I love you. Bye bye. Stay in touch.
I'm signing off. I'll see you next time, bye bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hey! I’m Hal. Welcome to all the new subscribers! Please press PLAY above for the full 12-minute experience of this episode. Enjoy! Be sure to introduce yourself in the comments.
Low Key Gliding
I wanna start by welcoming all my new subscribers from TikTok.
During the big scare of TikTok getting shut down, I posted a video that invited all my TikTok followers to come over to Substack and join me here. I'm so grateful that about 500 TikTokers moved over from TikTok to Substack and found me here. Thanks for making that effort. Thanks for joining me.
You know, I think of TikTok and Substack as being two very different worlds. For me, TikTok has been my music world. It's been my music self.
I've been a musician ever since I was playing the ancient hand whistle in third grade. And for the last many years, being a musician has been my primary source of identity. It's who I am. My specialty has been writing songs and playing musical instruments that nobody's ever heard of. For about 20 years, I found my home performing in the gymnasiums of elementary schools around Ohio, wondering when I was finally gonna get discovered.
Then, in May of 2019, I was giving an assembly to some fifth graders in Akron, Ohio, and during the question and answer time, a young fifth grader stood up and she asked, “Are you on TikTok?” And I said, “No.” And she said, “You should be.” I'll never forget that response. I believed her when she said it. After the assembly, a group of fifth grade girls huddled around me and assured me that if I were to upload a TikTok, they would listen and they would ‘like’ it.
So I went home and I downloaded TikTok, and I sang, “I'm off the deep end. Watch as I dive in. I'll never meet the ground.” And I had big hopes for viral success, the thing I'd been waiting for my whole life. So I put that video up, and I got about 10 likes from those 10 girls that had gathered around me after the assembly. And then I put the app aside.
I guess it was good I had about six months of just scrolling videos, getting a feel for what the “For You” page was all about. But starting on January 1, 2020, I started posting original videos of me playing music every single day. I didn't miss a day for months or even years. I gained a following on TikTok — hundreds and then thousands, then hundreds of thousands, and finally, 3 million followers on that little app. After all those years of waiting, I finally got discovered. Believe it or not, I became a world famous khaen player, in large part thanks to “Low Key Gliding.” That's the song you heard at the beginning of this episode. It's my one hit wonder.
You know, back in 2020 TikTok was a very special place. I felt like I was meeting a whole community of artists and dancers and musicians and comedians, creators and lovers of the arts. It felt kind of like I was coming home to the most amazing talent show ever in existence. And fairly quickly, I got to be one of the stars.
I remember in 2020 I was boarding a flight from San Francisco and I was sitting next to these two young guys. I so badly wanted to know if they'd seen me on TikTok. So I said, “Hey, are you guys on TikTok?” And they looked at me kind of funny and said, “No.” I was so excited about this new world that I had found. I was so excited about my twenty thousand followers. I just wanted to spread the word… and get a little hit of validation. “Look at me! Look at me!”
Though I could sense the addictive nature of scrolling on the “For You” page, and I know my own insatiable hunger to be seen, it was during the beginning of the pandemic, and I really felt like I had found some sort of creative community. TikTok has changed a lot since then. All the corporations and all the news outlets joined TikTok, and my “For You” page looks quite a bit different today than it did five years ago.
With the threat of it being shut down, I looked back and I realized that we had something very beautiful. I missed those times and I felt some real sadness. So I posted my goodbye video, played “Low Key Gliding,” and as “Low Key Gliding” usually does, it went viral. Thanks to all those TikTokers who made the effort to come over here and meet me on Substack.Substack is a very different world for me. It's been the world of sharing my story of living with a debilitating illness called ME/CFS, myalgic encephalomyelitis. I coined the phrase myalgic encephalo-f*n’-myelitis, also known as chronic—fk you— fatigue syndrome. I'm not a big swearer, but it's the kind of illness that makes you want to swear out loud. It's a mean, brutal, senseless, misunderstood, poorly researched, weird blessing of an illness. It's a nasty one. Recently I heard it described as a “horrific” illness, and I thought, “damn, why did I have to get the horrific illness?”*
I don’t want a horrific illness. I just wanna make TikToks.
Just in case you haven't heard the story. Back in 1991, I was a long distance runner and long distance cyclist. One spring day, I woke up in the morning and had weird symptoms in my body that never went away. It was a sudden onset — totally out of the blue. I was just 25 years old. And over the last 34 years, the symptoms have gotten progressively worse. At this point, I'm mostly bed bound and definitely house bound. Without a half milligram of Ativan, I can’t even play “Low Key Gliding.”
This song’s an important part of my TikTok story. It was on May 1, 2020. I was in my dining room in search of my next idea for a TikTok video. After many years of playing my song “Khaen Rock” on the melodious khaen, a mouth organ from Southeast Asia, I slowed it down a bit, and I slipped into a new groove that would eventually become “Low Key Gliding.”
Right away it felt real good. It was smooth and easy and calm. It all happened so organically. The fingering fell right into the comfort of my hands and the breathing was so easy. I knew I'd found something special, but I had no idea how special it would be. Hundreds of people tagged a guy named Llusion in that video of me playing “Low Key Gliding,” and it caught his attention. Llusion remixed that sound into a sound that became the sound — the sound of TikTok 2020 and 2021.
Just In case you haven't heard it. Here it is.
It had mega viral success. That track alone opened up doors that I never could have imagined opening to me. It changed my career. It changed my life.
I really enjoyed my kind of self designated role on TikTok. I felt like I was the musician uncle that every young kid wishes he had and deserves to have.
My TikTok demographic is mostly young men between the age of 16 and 24. They really took a liking to “Low Key Gliding” and all the instruments I play… and that cool uncle vibe. It's a very different demographic over here on Substack, I've discovered that the world of chronic illness is made up of mostly women. I’m not complaining. I’m just curious how these two demographics are gonna vibe. So I'm hoping to somehow find a way to integrate these 500 new TikTok followers into this “Living in a Body” community. To be honest, I'm not sure how it's gonna work, but let’s give a warm welcome to all the new followers.
Welcome to this other world of Hal Walker. It’s called “Living in a Body” on Substack. There’s not as much scrolling here and probably not as much “Low Key Gliding.
A friend of mine recently described Living in a Body. She said “To me, your Substack is about a life torn open by chronic illness and the journey you're taking to God.” Wherever you are on this journey, and whatever you happen to call that journey to God or journey to what is, sooner or later, we all end up on this journey. I'm glad to be sharing my story along the way. Thanks so much for taking the time to listen — really.
You know, I have a feeling that Substack is the social media the future. It's not owned by a multi-billionaire. We have our little corner. We have our little “Living in a Body” corner here where we can build our own community. There are lots of little communities here on Substack. Find a place for yourself and make yourself at home. I'm looking forward to doing my little part to make this a hip, cool place where you actually want to hang out.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
So if you're new, please say “hello” in the comments. Tell me about yourself. Where'd we first meet? Where'd you first hear Low Key Gliding?
What's your favorite… chronic illness? (lol) Or what's your favorite musical instrument? That's a good one. Or just say “hello” and tell me where you're from.
I think that's it for today. I think we did it. “Low Key Gliding — One Hit Wonder.” You know, I'm not really a one hit wonder. I have a deep catalog of music in my career. But I'll tell you what. It was “Low Key Gliding” that took my career into a whole new dimension. And the timing couldn't have been better, considering I'm mostly bed bound and unable to work outside the home. Thank God for “Low Key Gliding.”
As far as that lifelong craving to be noticed goes… I’m still working through all that. I know more than ever that what I really want is quiet contentment and connection. I realize that what I was longing for was already with me the whole time. I just needed to slow down long enough to see it. I guess that’s been the blessing of this damn illness. I guess I’ve got to admit that chronic fatigue syndrome has been one of my greatest teachers.
Everybody, remember… enjoy living in that body of yours. It's not gonna be around forever. I guarantee it. Even if you think it will be. I used to think that — when I was 22 years old, climbing mountains. I didn't think it was ever going to end. Now I'm 57 and I'm fairly certain it's gonna come to an end eventually. But in the meantime, I'm taking it one day at a time — smiling, crying, loving, feeling, low key gliding.
Thank you so much. Have a good day.
Bye, bye ❤️
Get full access to Living in a Body at halwalker.substack.com/subscribe
Three Sisters
One of the greatest challenges of living with ME/CFS is the unpredictability. I never know what body I'm gonna wake up into every morning. I think about all the healthy people who every day, they pretty much expect what body they're going to wake up into. Sometimes they get sick, but for the most part, it's the same body, and it ages over time, but it's usually the same body. That's not the case for me and others living with this illness. We never know what’s coming next.
Recently, I woke up to a surprise that I didn't particularly like. I'd been rolling along pretty nicely, feeling fairly stable over the several weeks between Thanksgiving and Christmas. On New Year's Eve, my mom and my sister Caroline were over, and we were sitting downstairs and enjoying some time in front of the Christmas tree. I was grateful for my stability, but I came upstairs and my ears started ringing super loud. And that's always a sign that something bad's about to happen. And I went to sleep, and I woke up at two in the morning having sweat through my clothes and very sick, weak, feeling in my arms, a loud ringing in my ears and just an overall illness that's hard to describe. But it's very scary, especially at two o'clock in the morning. So January 1st was a rough one.
And then January 2nd was even rougher. I woke up on January 2nd and my ears were just screaming, and I felt so sick. And it's a scary kind of sickness. It's not a sickness like a normal, healthy person feels like, “Ooh, I'm sick, but I just got to wait it out for 24 hours or 48 hours or a week, and I'll be back to normal.” You know, when you feel this sick with ME/CFS, it's a scary kind of “Holy st. Is this what I'm gonna be dealing with for the rest of my life? And is this another downturn?” And all the mental stuff that goes along with the physical stuff is just very challenging. It's brutal.
Anyway, yesterday morning, I called my sister, Caroline, and she picked up. I said, “KK, I don't feel good.” And we talked, and I just cried. I cried and I said, “I don't feel good, KK.” She said, “What's wrong, Hal?” “I don't feel good.”
I just didn't feel good. I don't feel good. I just said it over and over again, and she was very loving and very kind, and wishes she could do something. But it's like, no matter what anybody says, I just gotta face it. I gotta face it by myself in the end, here in my bed, writhing in my bed, hoping that tomorrow when I wake up, it's not as bad. And I'm grateful to say that today is January 3rd, and I woke up and it wasn't quite as bad. My ears are not screaming, and I've had a little bit more function.
But my topic today is three sisters. In my email this morning, I got my sister Johanna's email. It's called “Skinny dipping with Johanna.” She's been writing it for many months on Fridays, and I always look forward to receiving these. She's such a great writer. She has a very adventuresome life inside and out. Some of her creative adventures include storytelling and dancing and coaching speakers and gardening and making art. And she's the kind of woman that was up late on New Year’s Eve swing dancing with the swing dance community out in Boulder. She’s the kind of woman that gathers her friends together on her birthday to do ceremonial walks and creative play out in the fields.
She lives in Boulder, Colorado and she's making a big move to Massachusetts this month. And this morning, I woke up to her “Skinny Dipping with Johanna” email and it announced that she was starting a Substack. And I got excited. I've been encouraging her to start a Substack for many, many months. And every time I get Johanna's email, I want to like and comment on it and share it on Substack, and I send her a message that says, “Johanna! Substack! Please!” And I want to let you know Johanna Walker has joined Substack. It's called “Skinny dipping with Johanna.” And if I were you, I'd run over there right now and subscribe. And don't miss out. This was her first post today talking about this big move from Colorado to Massachusetts.
So the point I'm trying to make is, I have three sisters. I am profoundly gifted in the sisters department. I realize this topic is worthy of weeks of word crafting and essay writing, but I just came up with the idea today. So I'm just sitting in front of the microphone to tell you about it. But to tell you the truth, my writing life has been pretty non-existent lately. I just haven't had the wellness. I haven't had the oomph to sit down and write, especially now that I discovered I can just turn on the microphone and start talking. It's much easier. To tell you the truth it feels a little bit like cheating, but there you have it.
I remember times during ‘23 and ‘24 I'd spent hours here in my bed editing, wordcrafting, perfecting, and I loved it, and I'd like to get back to that eventually, but for now, this is what you get. I realize these spontaneous posts lose a certain amount of artistic somethin’ or other, but I guess it also adds a little bit of spontaneity. Like we're just sitting on the edge of our seats waiting to see what comes out of his mouth next.
But anyway, I have these three sisters, Julie, Johanna and KK. It's Julia Lowe, Johanna Marie and Caroline Carlson Walker. They live in fear away places but I got to see each of them here in Kent at different times since Thanksgiving. And I feel so blessed. My daughter has three wonderful aunts who she feels so at home with and looks up to. And I have these three sisters that have supported me through some very, very difficult times.
I remember in the end of 2021 being on a Zoom call with them, just crying, wondering how much longer I was gonna live. This illness was so scary and I was just declining. I was having crash after crash, and I couldn't imagine the crashes ever ending. And I wasn't picturing living much past January of 2022. I was so scared. They sat and listened to me. Each one of my sisters, in her own way, has been there for me, phone call after phone call, me on the other end crying, saying, “I don't feel good. I don't feel so good. I don't feel good. I'm so scared.”
Anyway… and then they don't hear from me for a little while, and they're all relieved. Oh, good. I haven't heard from Hal for like three weeks. He must be in a better place. But more and more, I'm just sort of settling into the reality of this illness. And like, this is my life. This is my life, here in bed, and some days are worse than others, and some are a lot worse, like yesterday was… I’ve been saying this alot over the last couple years, but it was one of the hardest days of my life. It's such a mysterious, debilitating, uncomfortable, scary illness. You know weakness in the gut, screaming ears, weakness in the arms, a sick weakness in the arms. But it always changes. Wait a day, wait a couple days. It’ll change.
Every once in a while I get overwhelmed with self-pity and fear and thinking about my future — 58, bedbound, needing a full time caregiver, rarely leaving the upstairs. It's scary, but then you look at the world, the tragedy in New Orleans and tragedy in Gaza and the tragedy in the subway system in New York City. And I'm blessed with a peaceful, quiet, beautiful afternoon here in Kent, Ohio. It was a beautiful snow falling outside. I was sitting by my window watching it for a while. And I'm safe inside. And I have three sisters out there looking after me from far away places. And Johanna, who I wish I had a good antidote for you, not an antidote… an anecdote. I do remember this one.
I was working for a summer outside of Boulder, Colorado. I'd ride my bike down from Rollinsville all the way into Boulder and go up on the foothills to smoke a little pot and come down into the Pearl Street Mall and hang out with the hippies. And I was writing a letter to Johanna saying “Everyone seems so fake. They're not real.” Everyone in their conservative corporate outfits — like the hippies were the only real people. I was the only real person — me with my messy clothes and my long hair and my revolutionary attitude, drinking coffee and crocheting hacky-sacks. And I was just judging all the straight laced people. And here I was in the center of the hippest town, probably in the US back in 1986 and I was judging.
I'll never forget Johanna's response, which came weeks later, explaining to me about the Velveteen Rabbit who only became real when she was loved by another person. And that's what makes people real, is love. And everyone needs that love, and everyone becomes real when they're loved. So I got some good wisdom about love from my big sister Johanna, back in the letter writing days, back when our letters were full of colored pencils and markers and it took two weeks to correspond —rather than a text.
But I am blessed in the love department. I have three sisters that I love and who love me and each one in their own way, Julie in her very…. like, if you want something done, you call Julie. If you want a solution to a problem, call Julie. If I want a form filled out or a website recreated, I call Julie. She was my big sister at Northwestern. She had graduated from Northwestern, and I was starting as a freshman and she was in the theatre. She was so cool living on the north side of Chicago in an apartment. Sometimes I would visit her as a freshman in college. Those were the days. 1984.
If I want a caring, loving, younger sister vibe, I call Caroline. Of course, she gets things done too. She helped me out a lot this last week. We call her KK. That's who I called yesterday in tears. I remember visiting Caroline as an older brother at Wooster College in Wooster, Ohio. I was kind of self absorbed. The main thing I remember is the Crandalls. The Crandalls was the the hippie’s fraternity. Those were the hacky sack playing, Frisbee throwing and pot smoking fraternity. It was the long haired, messy, flowing clothes fraternity. Whenever I visited KK, I went in search of the Crandalls. (lol) “Where are the Crandalls? I want to hang out with the Crandalls.” I wonder if the Crandalls still exist at Wooster. I wonder if they're still playing hacky sack. But Caroline is an awesome sister. She's a school teacher and a mom in Denver, Colorado, and she says, anytime I want to come visit and stay in her house, it's an open invitation. I appreciate that, KK.
All three of my sisters will listen to me cry, but it was really Johanna that taught me kind of the art of crying, the art of opening and sharing and listening. And you know, for years now, we've called each other and said, “Will you listen to me cry?” What a blessing that's been. But it's not all about crying. We have such a friendly vibe between us, me and my three sisters. I love it.
I'm the quiet one. We have an occasional family Zoom time, and I sit quietly while KK, Julie, Johanna, Hallie and my mom fill up the space with their stories. They've got great stories to tell too, but I'm the quiet one. I've always been the quiet one, over in the corner playing the guitar, playing the hand pan, off in the distance playing the harmonica. I’m the only boy. I'm the quiet one.
Well anyway… the point I'm trying to make is I'm quite blessed in the sisters department. And really, I want to encourage you to go sign up for “Skinny Dipping with Johanna,” Do it today. Let's support her during this challenging moment in life, moving from Colorado to Massachusetts, follow along on the story. It's going to be exciting. She's a great storyteller. Let's support her on this next phase of her path. Just sending my love and I want to send all my Substack followers over to “Skinny Dipping with Johanna.”
All right, that's all I got for you today, everyone. I'm taking it easy here. It's been a rough year so far, 2025 has not been easy. Damn ME/CFS. But as my friend Emma says, “it's my teacher,” and as my program says, “Be grateful for the hard things. Be grateful for the challenges.” Who knows what this challenge is leading me to? Who knows what kind of service I'm gonna be able to do because of what I've been through?
All right, Happy New Year. Sending all my love to each and every single one of you here on Substack. I'm gonna send this out and have some quiet time. Hey, I'll send you a picture of my of the beautiful snow out my front window.
All right. Thank you. Remember. It's January. If you've got a body, live in it. Breathe in it. Feel in it. Yeah. All right. Have a good day. Bye, bye.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hey! Happy Holidays! Merry Christmas. Happy Hanukkah. Happy Boxing Day. Happy New Year and Happy Hallie’s birthday. Yay!
Though this past year was one of the most difficult years of my life, today I bring to you the “Best of 2024.” Looking back, maybe it wasn’t such a bad year after all.
I grew my first ever wildflower garden this year and I spent the summer taking photographs of it. I learned the names and fell in love with zinnias, poppies, coneflowers, coreopsis, black eyed susans and cosmos. I also fell in love with my Sony Alpha 70-350 mm super telephoto lens. It’s amazing. It was so fun to capture the cycles of change in the garden throughout the summer and fall — close up with that lens.
Speaking of falling in love, back in September, I met Emma Kitchen. She commented on one of my Substack posts and since then we’ve become the best of friends. We’re part of a mutual appreciation club that consists of just two members. Emma’s from Warwickshire, England and I’m from Ohio so we’ve had to struggle with the language and culture barrier, but the struggle has been hilarious. This year, I’ve become a huge fan of Boxing Day. Already, I’m counting the days ‘till Boxing Day 2025. I’ve also become a huge fan of WhatsApp. It has allowed for texts, voice memos, video memos, voice calls and video calls with my new friend. All for free. If you listen very closely, you may hear a little bit of an English accent in my voice these days. That comes from hours of video calls with an English woman. I feel like God looked down and said, “Hal, you deserve something really wonderful.” That’s what Emma is. She’s wonderful. Watch for her Substack which is called Lanterns in the Dark and it’s coming soon. Stay tuned.
Speaking of blessings, I am truly blessed to have Bonnie Mango as my housemate and caregiver. He is dedicated to me as if we were brothers. He is a delight to have in my home and I consider him to be family. He runs the facilities around here on South Chestnut Street while he continues to save my life with his generous care.
And of course, one of the great joys of 2024 has been continuing to create podcast episodes of “Living in a Body.” This year, we popped out 25 new episodes - each with original music and narration. In case you missed them, you’ll find some of my favorites below. (see below) Don’t miss the story of my daughter’s wedding. Hallie and Andy make such a beautiful young couple. Hallie reported that their drive down to Cincinnati to see Andy’s family went so fast cause they spent the whole time singing — harmonizing Christmas carols and Broadway tunes. It touched my heart and made me so happy to hear that.
Everyone, thanks for your part in making this a great year. 2024 — a horrendous year of decline in health with the challenges of ME/CFS. But in so many ways, it was a blessed year. I’m very pleased to report that in the last couple months, I’ve experienced some stability in my condition for the first time in a year. Believe me, I’m so pleased about this and we can all hope that it continues. I’m sending my love to all those out there that are living with this condition. It’s a rough one… especially over the holidays. Remember, you’re not alone. We’re sort of a team, aren’t we?
Thank you so much for reading. Thank you for listening. Special thanks to the 91 paid subscribers that are helping me to earn a bit of a living doing this from my bed. Thank you.
And remember. Enjoy living in that body of yours. If you’ve got one, enjoy it. It’s not gonna be around forever. Yes. Go for a walk. Go make a snowman. Or go jump in the rain puddles. Go hug your next door neighbor. Go visit somebody in a nursing home. Take a walk down by the river. Take a wheelchair ride into town. Breathe that fresh air. If you’re in bed, give yourself some loving caresses, some loving, caring caresses. Stroke your face. Stroke your arms. You deserve it. Alright?
Thank you. I’ll see you next time. Happy New Year. Bye. ❤️. Hal
More Best of 2024 Below
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
In Search of a Place to Lie Down
The holidays are approaching and I'm feeling so excited about my presents. I've never really been a great present guy. I've always been more of a last minute present guy, trying to pull something together at the last minute, wrapping with newsprint or paper bags from the grocery store. I've never been a great presents guy, but this year, I really outdid myself. I'm so excited. (chuckle)
Unfortunately, I can't tell you what it is, but I can't wait for my family to receive their presents… and for a few friends too. I got an idea back in September and I started working on it. That's the time to start working on Christmas presents, or holiday presents, is September. At least, that's what I'm discovering. The present that I'm gonna be giving to my family arrived in the mail today and I'm just smiling.
I'm smiling as I lie here in this bed, my day bed. I transferred from my nighttime bed to my day bed early this morning and I have spent most of the day lying down in this bed. I'm grateful to have two beds. I mean, how many guys have two beds? I have one really nice bed from Dreamcloud company. That's my nighttime bed. And I crawl into that bed at night and I take a melatonin.
I've been crawling in early lately. I love to get into my bed at about eight o'clock and I do a little bit of reading. I read out of the big book a couple pages. I write a gratitude list and maybe I'll listen to a little bit of the book I'm listening to, which is Beartown. I'm loving it and I'm on chapter 11, I think, and I’m really loving it. As you may know, I'm not a big reader, but I'm really enjoying entering into this world of Beartown.
But I love to get into bed early. I’m asleep by nine o'clock, and then I wake up pretty much every night. Sometimes I'll wake up at 1:30. That's a pretty good one. Sometimes I’ll wake up at 11:30. (lol) I hate it when that happens — waking up at 11:30. It feels like it should be the morning, but I can still hear the people partying in downtown Kent. But generally, I wake up around one’oclock or 1:30 and I take a half dose of Zzz quill to get me back to sleep. And then I wake up again around 6 am. This morning, it was more like 5 am, so I meditate for two hours till my broth at seven.
Anyway, you didn't want to know all that… or maybe you did. Just little stuff about my life, lying down — the life of a guy who spends most of his time lying down. And that's the subject for today. It's called “In Search of a Place to Lie Down.”
When I was in college, I was always in search of stairwells and parking garages. I went to Northwestern University and I was not a very good student. I was a history major, but my passion was on the Frisbee field. My passion was in the hacky sack circle. And my passion was riding my bike around Chicago by myself with a harmonica in my pocket, going in search of stairwells and parking garages — places with great acoustics, where I could wail the harmonica, places where the reverb would just blow your mind and fill the whole space. I've really spent my life… a big part of my life has been going in search of great acoustics and I've been blessed in that area. For 25 years, I was the music director at the Unitarian Universalist Church of Kent, which literally has the best acoustics in Northeast Ohio — warm, generous, forgiving, so… just… mmm. It's just a great listening space, one of the greatest places for an acoustic concert anywhere.
Anyway… as I was saying.
My earlier years were always in search of a parking garage or a stairwell. There was this one stairwell in downtown Evanston I used to go to. I'd climb to the third floor and maybe smoke a little… I don't know. I shouldn't mention it. But probably, maybe smoke a little one hitter of marijuana and explore the vastness of sound. I shouldn't have mentioned that in case there are any young people on here, but there you have it. (lol) I haven't smoked marijuana in a long time. So...
Children, young people, listen up. I don't recommend it. Go to God. Go to silence. Go to quiet. Go to reality. Live in reality. Live in relationship. You don't need the dope. You don't need the pot. Of course, you might have to find out on your own, but from a guy who’s been there, I’m just saying. You know.. stay in reality. Feel the feelings. Feel the feelings. Take responsibility for your life. (lol) Feel the feelings.
Anyway… we digress.
But later in my life, after 1991 when I experienced the sudden onset of ME/CFS, chronic fatigue syndrome, the mysterious sudden onset, I became a man who was always in search of a place to lie down. I became a master of finding a place to lie down. And I just want to tell you about a few of those times.
The first one that comes to mind is is I spent a lot of my time working in schools as an artist-in-residence. I travelled around Ohio writing songs and giving mass harmonica lessons. I would arrive at the school and discuss with the teachers about what the residency was gonna look like, but always, at some point, I would find out where my lie down space was going to be. I would express to them that all I need is something the size of a closet. I don't need a couch. I don't need a rug. I don't need a pillow. All I need is an eight-foot by five-foot space to lie down on a linoleum floor. I need a private space somewhere where I can lie down. And seriously, a closet would be just fine.
And that's what I did, many times a day sometimes. I would go to the spot. I would lie flat on my back on the linoleum floor, spread my arms wide and sink into the floor. And I would usually do this for a timed session of 10 or 12 minutes. And it was amazing how my body would just sink. It's like after all this activity of teaching and all this energy I was outputting, I would sink into that floor for 10 minutes. My arms and legs would become numb and it was like I couldn't get close enough to the floor. But 10 minutes later, the little bell would go off, and I would pop up and be ready for action. I’d stand up in front of 200 fourth graders and I’d… be on fire with energy.
I lived with what I now consider a very mild version of MECFS. I lived a very full life, but it was always with me. It was very real and it was always with me. You know how exercise and exertion can feel good to you? Well, it never felt good to me. Any kind of exertion always made me sick.
Here’s a story…
One time, I was working with the Mad River Theater Works. We were traveling around southern Ohio putting on “The Legend of Casey Jones.” It was a high energy production. We'd unload the van and set up the set and when we were all ready to go, I'd lie down behind the set before the show.
But I remember one time we were in a little town in southwestern Ohio, we'd put on two shows a day and this time we were on lunch break. We were right in the downtown, next to the town hall—this beautiful, old Ohio town hall that had a beautiful green space all around this big, Gothic building. And we had had our lunch and we had about a half hour to kill before we had to move on. So I laid myself down on the green space in front of the Town Hall. And I would take the dead man's pose, that was my favorite pose was the dead man's pose — basically shavasana in yoga. I'm flat on my back, arms to my side, head relaxed, eyes closed, total surrender, total surrender into the grass.
A few minutes later, after I settled in, a policeman came up and asked if everything was okay. And I said, “Yes, everything's fine.” And he said, “I'm sorry, but you're gonna have to move on. You're gonna have to leave this space. You've caused a concern to several people in the offices, and they'd like to ask that you not lie down here anymore. And they've asked that you leave.” (One of the more memorable times of finding random places to lie down.) You know, I lied down in so many green spaces all around Ohio.
Another one on a date at Porthouse Theater. You know, at the break everybody goes up and mingles and goes to the bathroom and has a snack, but I went in search of a place to lie down. So I found myself a picnic table and I explained to my date that that's the kind of guy I am. I'm the kind of guy that's always in search of a place to lie down. Fortunately, she was enamored enough that it didn't bother her. In this case, it was at night. It might have been damp ground and probably a little brisk. So a picnic table was a perfect place to lie down.
Another time, I remember being in a Whole Foods store with a friend. I was explaining to her that I'm a master of finding places to lie down. And right there in the store, I found this little nook over next to the produce, and it was just big enough to lie down, so right there in front of the whole world and in front of my friend, that's what I did.
Linoleum floor, tile floor, wood floor, carpet, whatever. I don't want a couch. I don't want a pillow. Just give me a place to lie down. Give me a flat space where I can play dead for 10 minutes. You know, that was one of the feelings I remember most in early onset of ME/CFS, this dead feeling, like the life force is not there. The flow is gone and my battery is on empty. The life force is not there and I need to get close to the ground.
Another good lying down story was… At church, we used to have this upright piano in the front that I would play to accompany the hymns. I would perform the piece, whatever we were playing, and then I would lie down behind the upright piano, just hidden enough that the congregation could only see my feet sticking out by the piano. And I believed that this was my right. You know, I was just taking care of myself. But my minister, the Reverend Melissa Carvill-Ziemer, said, “Hal, you know, some members are concerned about about how it looks for you to be lying down, during the sermon, behind the piano.”
That reminds me of another story of the previous minister, Julie-Ann Silberman-Bunn. She said, “Hal there's some there are some church members that are concerned about you always having holes in your pants, in the butt of your pants.” And I was so defensive about that. It's like, what do you mean!? They're worried about such a surface thing as me having holes in my pants? I was such a rebel. I didn't want to believe in conventional things like not having holes in your pants, and I had a real self righteous attitude about it, like, “come on, people!”
But years later, I learned the joy of having nice pants. I learned the joy of putting on pants that didn't have holes in them. I used to walk into schools with pants that had holes in the butt where you could see my underpants. (lol) I was just not the most… I was not the most together guy. And I'll tell you what kids, a lot of it was that “marijuani” that I was smoking. I have come a long way in my togetherness. But anyway, I stopped lying down. I stopped lying down behind the piano. Sometimes I would lie down on a pew… always in search of a place to lie down.
I think I'll close with this one. One of my greatest lying down memories was… During the pandemic, the whole town shut down. The church shut down. Everything went online and this was a glory moment for me. Suddenly, I had the dream of my life to be able to be at home, create what I want to create. And not only that, but a half mile from my house, I had the best acoustics in town, the UU Church in Kent as my own personal studio and the whole town was silent. There was no traffic. So I would show up there at 11 o'clock at night, set up my sound system, set up a nice mood lighting, set up the recording and record the album that I had been procrastinating for years. Thankfully, it was those late night recording sessions at the church that has kept my livelihood going as I lay here in bed and people keep streaming on Spotify and Apple Music. Thank you, God.
But here are the sacred moments that I remember lying down in between sessions. I turn on the microphone, play a little bit of that melodious khaen and then it was lying down time. And I would sink into that floor. I would let my body sink into that floor in the dead man's pose. It was like I was sinking into the bedrock of the building. I could feel the weight. I could feel the heaviness of my body just wanting to get as close to the floor as possible.
Oh, and that reminds me of one more story I just gotta tell you. I promise this is the last one. I was very ill. Had a gig down in Columbus at the UU Church in Columbus, and I was traveling down there with a trio. I laid down in the back of the van the whole way down and we arrived. And I was shown to my green room, or my dressing space, and I lied down, the whole time thinking, “How in the world am I going to get up and give a concert in this place.” I just had this sick, deep fatigue, deep weakness, deep illness. But when it came time for me to get on that stage, I stood up, walked onto that stage, turned on the microphone, and you know, I gave the best concert ever. Time after time, I would give the best concert ever, coming out of a deep state of illness, all thanks to adrenaline and whatever other chemicals come alive when I was on a stage needing to perform for a whole bunch of people. But I remember many times like that, right before a show, finding a place in the backstage to lie down.
I spent about 33 years in my life searching for places to lie down, and now, pretty much house bound, mostly bed bound. I move from my nighttime bed, I take a wheelchair ride over to my daytime bed and somehow I'm getting used to it. Somehow I'm getting used to the life in bed.
Everyone, that's my story. That's my story about going in search of places to lie down. Give it a try. You know, there's nothing wrong.
That was one other thing. I was always self-conscious of lying down—in case people would see me. If someone walked in at the very last second, I would pretend I was stretching. You know, I'd move my leg up, pretend I was doing some yoga, because this dead man's pose is so intimidating or concerning to people. That went on for years, being afraid of someone catching me lying down. It's a shame — so self-conscious, so afraid that I'll displease someone. That's a whole ‘nother story, though, that's a whole ‘nother episode.
Thanks for listening. It's called Living in a Body. If you've got a body, go live in it. Go live in it. It ain't gonna be here forever. I love you. I care, sending care during this holiday season. I really appreciate you listening. See you next time. Episode 99!
Bye Bye. H
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” Please share this post with a friend. Click PLAY above for the full Podcast experience of this publication with music. (13 minute listen) And be sure to stick around till the end for a spontaneous, cameo appearance by my friend Annette Dowling.
How Can I Help
On Tiktok, I posted a post about the fact that I'm living with severe ME/CFS and there was a thread of comments that broke my heart a little bit. I want to read it to you. I often get the question, “How can I help?” And today, I guess I'm gonna try and offer some suggestions.
But here… this starts with “my friend has ME/CFS as well. Does it get worse by time?” And someone suggests, “try to be there for them, the people and the support around us is all we have.” Next person says, “My co worker's wife has it, and she's bedridden.” “Damn man. He can't even leave his bed as well, and he's only 23 years old.” And the next guy says, “Bro, that's insane. I never heard of this until recently. Started off as a misdiagnosis of myocarditis, then went downhill. Really, no good treatment out there either.” “Absolutely and it makes me sad seeing him that way.” Next guy says, “Just don't stop seeing him any chance you get. Have a few minutes, just stop by and lift his spirits, let him know you're there for him and that you haven't forgotten him.” Next guy says “He's 23?!” “Yeah.” “Really sorry to hear that man. Try to make sure you're there for him, the best you can. It probably makes him pretty happy to see you care. Friends like that are rare.” “Yeah, man, I'm devastated. He was my gym buddy and now he can't get out of bed. I'm doing everything to get him back. I'm searching for cures and solutions. He doesn't have anybody, bro. I can't just let a human being cripple into depression. I'm getting him out of there, trust me.” And someone comes in with some clear advice, “Resting and pacing is crucial. A day in the gym could make it a lot worse.” “Maybe just take time to hang out in bed together.” “Damn man, that's what's heartbreaking for me. You can't even fight through it because it gets worse. It's a nightmare for every athletic guy, man. I hope you're doing well, you're a hero.”
And it goes on from there.
That's one of the millions, the #millionsmissing and easily forgotten. And I have a platform here that I just want to remind you on this end of November that there are people living with complex chronic illnesses you don't see every day. They're hidden in their bedrooms, behind dark shades and silencing headphones and eye masks, and it's easy to forget those guys.
You know, I'm so busy wrapped up in my life, I forget about everybody. Yesterday, I called a friend. It's amazing what calling a friend will do, or texting a friend saying, “Hey, just thinking about you, sending you the best. Have courage, friend.”
But really, to make this short, I'm gonna say I just gave $100 to the Open Medicine Foundation. They seem to be the best operation out there looking for medical solutions. You know, I know medicine is not the only answer. There's all kinds of psychological and spiritual approaches to this illness, but from what I can see, Open Medicine Foundation really has something good going. And they have a pittance of a budget. I mean, God, let's get a few million dollars over there rather than having bake sale money. But I just gave $100 and during the month of November, it's tripled. If you have a little money, if you have a little spare money, click this link and send some money over to the Open Medicine Foundation at the last minute. It's just during November, Triple Giving. Anything you give will triple.
For myself. When people say, “What can I do to help?” You know, if you're not going to cause any commotion, come on over and sit next to me. If your hands are soft, rub some cream on my feet, (lol) rub my arms and rub my hands. You know, if you can handle it, hold my hand while I cry. I got a lot of crying to do and it's nice to have someone holding my hand while I'm doing it. I know that's not easy. And even better yet, I'll hold your hand while you cry. I'd be honored. I would be honored. Believe me, there's nothing I want to do more than help somebody. But mainly, give a smile, say an encouraging, loving word. We could just sit here and hold hands and think about the good old days. (lol) There's a lot of hand holding going on. Um… Just wash your hands first! But seriously, the life of chronic illness can be lonely. A little touch helps, especially over the holidays.
You know, Thanksgiving was hard yesterday. I spent the day alone, mostly in the dark, feeling pretty sorry for myself. I had a few very nice, long distance phone calls, some great connections. But you know, during that dinner hour, I was in bed moaning and groaning while it felt like the whole world was out there enjoying Thanksgiving. It's a tough road, this road of chronic illness. Don't forget the people, look out for those people in your life that are home bound, bed ridden. And I realize it's not just the chronic illness people that need somebody to reach out. We all need somebody. We all need somebody. Old people, sad people, overworked people, healthy people, lonely people, poor people. We all need somebody. If I could do it over again when I was healthy, I'd spend a day a week. I mean, I say this, it's easy to say in hindsight. I'd spend a day a week visiting the elderly, visiting the sick.
I'm not saying I always want visits, but I'm always open to a spiritual companion, to sit in the darkness and ask God for help. Hey, I want to read one more thing to you. This came across my email. Yeah, I'm a Quaker. I joined the Kent Quaker meeting recently, and I am officially a Quaker. Yay. Hal’s a Quaker. Can't wait for my Quaker wedding and my Quaker funeral. Until then, listen to this...
The first time you practice contemplation, you'll only experience a darkness like a cloud of unknowing. You won't know what this is. You'll only know that in your will, you feel a simple reaching out to God. You must also know that this darkness and this cloud will always be between you and your God. Whatever you do, they will always keep you from seeing God clearly by the light of understanding in your intellect and will block you from feeling God fully in the sweetness of love and your emotions. So be sure you make your home in this darkness. Stay there as long as you can crying out to God over and over again because you love God, and it's the closest you can get to God here on Earth by waiting in this darkness and in this cloud.
-anonymous, late 14th century.
And then one more quote by Eden Grace, 2004, a Quaker Minister.
The only way through the cloud of unknowing is to head directly into the place of greatest uncertainty.
So if you ever want to hang out in the place of greatest uncertainty, come feel free to sit by my bedside, and we'll sit quietly together. And if your hands are soft, feel free to rub my feet. (lol) Alright. sending love from my bed. I want to send love to all those suffering, you know, all those suffering today in bed.
You know, I miss my old life so bad. I want to be out there. I want to be out on the river. I want to be out on the bike path. I want to be on my scooter riding around town. I want to be at the Kent Natural Foods store. I want to be dancing. I want to be contra dancing, playing Frisbee, playing ping pong. You know, I've got a lot of things I want to be doing, but instead I'm sitting here in the cloud of unknowing. I'm heading directly into the place of the greatest uncertainty and I'm sending 100 bucks that's tripled over to the (what's that group called, again) Open Medicine Foundation.
HalOh, look who just showed up. It’s Annette. Annette, this podcast is called, “How Can I Help?” I know you’ve helped alot of people. Give us some wisdom.
Hey Annette.
Annette Hey Hal, thanks. Um.
HalYou can be honest.
AnnetteI can be honest.
I think helping is the way that many people need to connect with other people. It's a way in to their lives that's not threatening, and I think the person that's offering the help gains much more from it than the person receiving. It touches your heart.
And that's what living is all about — loving and caring for other people and being cared for back. Thanks.
HalI couldn't have said it better myself. Thanks, Annette.
That was a little cameo, spontaneous appearance by Annette Dowling, thank you.
Alright everyone. That was Episode 98 1/2. Thank you so much.
All the best to you. Living in a Body. If you've got one, love it. Love it to the end. Thank you so much. Bye, bye.
Hey! Happy Thanksgiving. Happy holidays. Enjoy.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi, I'm Hal. This is the Living in a Body podcast. Welcome. A special welcome to all my new subscribers this week from TikTok and Instagram. Glad to have you here. It's called Living in a Body. This is episode 97. We've been going at it for a while now, but you're here just in time. Press PLAY above to listen. (25 Min.)
Be the Hole in the Donut
My sponsor keeps telling me to “be the hole in the donut”. To be honest, I'm not sure what it means, and besides, I don't think I'm doing a very good job at it. I’m so attached to the material world. But he's very kind. He's very generous and very helpful. He just keeps saying, “Be the hole in the donut, Hal”.
And I'll tell you a little bit later about what I think it means, but I'm gonna start with a little story about something that happened to me this week.
On Sunday, I posted 80 seconds of me playing “Low Key Gliding” on the melodious khaen, an instrument I play from Southeast Asia. Here’s a little taste of it:
And within three days, three days later, the video had gotten 30 million views on Tiktok. 30 million views on Tiktok…and I'm over here trying to be the hole in the donut. But in order to tell you the story right, we’ve gotta start at the beginning. It starts something like this…
I don't know if you know this about me, but like many people with my illness, I do not have proper medical care. I'm essentially making up my own treatment for a very serious chronic illness, a severe version of something called myalgic encephalomyelitis, also known as chronic fatigue syndrome. We call it ME/CFS for short. You know, I have a few doctors here and there. None of them coordinate. None of them are working together. No one's really on top of my situation. They’re perfectly nice, hard working people, but when it comes to ME/CFS, they’re clueless. So as is the case for many people with this illness, I'm just making it up as I go. It's a scary place to be, because I'm no scientist. I'm no doctor. I don’t have the strength to do a whole lot of research. I do a fairly good job at self-care, but man wouldn’t it be great to have a team of specialists working on me — backing me up.
For now, I’ve got my sponsor and the spiritual solution of this 12-step program calling me to just for today, one day at a time, be the hole in the donut, Hal.
Anyway, with a prescription I got from my nurse practitioner psychiatrist, I’ve been using a drug called Lorazepam, or Ativan, to save my life. Without Ativan, I'm unable to eat, unable to speak, unable to move my arms. And with a small dose of Ativan in my blood, just a little quarter milligram, I'm able to do those things for a little period of time. I call it an “Ativan window.” And as long as I respect the Ativan window, I'm able to do mild activity in my bed, like eat, move my arms, speak into this microphone and make a few phone calls, things that give my life some quality — all without crashing, without having one of these neurological episodes I've been telling you about. Ativan is the one thing I've found that stops the crashes, and as far as I'm concerned, that's the most important thing I need to do — stop the decline. Without these little pills though, I’m in some very deep illness, lying on my back with an eye mask and silencing headphones scared of the next airplane that’s gonna fly overhead and cause my overly sensitive brain to have one of these episodes of crashing.
As a reminder of what I've been going through, 2024 has been a year of these episodes. One a week turned into two and three a week, all the way up to about 10 in a week. And these are neurological episodes, kind of like seizures that happen with any kind of stimulus or exertion. And it's a total mystery.
When I hear other people talk about their symptoms of ME/CFS, I don't hear talk of this specific kind of seizure that I'm having. But! After having ten in one week, several weeks ago, on my own, I decided to try this Ativan approach. I take a small dose of Ativan three times a day to keep my brain right above the crash zone. And it's been successful. It's been about three weeks, I believe, since my last episode, except for today, that is. I'll tell you about that in a minute.
I'm not sure how it relates to being the hole in the donut, but this is me taking charge of my life and trying to save myself from further decline. Anyway, yesterday, I took my quarter milligram of Ativan in the morning, was able to get up from the bed and make my broth, make my Kachava, and then I got this idea. You know, Hallie’s in town this week. Maybe if I took another half Ativan, Hallie and I could go to church together.
And that's what we did. I took another half Ativan, I put on some actual pants. I put on actual pants, as opposed to just no pants — no pants or just underwear or some yoga pants. Anyway, I put on some pants and I put on a shirt, my favorite green kind of fall sweatshirt made by Prana. We loaded up the wheel chair and we went to church!
Hallie and I went to church, and it was pleasant. We first went to the discussion before church, and then we went to church. There's no doubt I was fragile. But we got to see some old friends. We got to hear the Tarnished Brass brass ensemble. We got to hear a nice service about gratitude, and I got to sit next to Hallie in church, and I kept my silencing headphones and a mask on just to be safe. It was very beautiful. And the sun, you know, as always, the sun coming through the UU church of Kent windows is a one of a kind sight to behold that someday I hope you can experience. And we left right after church, and came home, and I got into bed.
So it was a success. And then I got inspired. I said, “Hallie, let's take advantage of this Ativan window and go record some ‘Low Key Gliding’ out on the front porch. We can bring back 2020, back to the days of playing the khaen for all the young people on TikTok. And let's see what we can make happen… Here we go.”
And Hallie said, “Are you sure, daddy? It's been a while since you played any music.”I said, “Let's go for it.”
That's what we did. Hallie Walker and I went out on the front porch and recorded 80 seconds of “Low Key Gliding”. We did it with her phone, which has a great camera and a great microphone. And Hallie is a great videographer. And 80 seconds was enough. It was quite satisfying, quite enjoyable. That piece is deeply embedded in my lungs and sitting there on the front porch, the best front porch on South Chestnut Street in the sun, and all the glory of the wind… and the air, I was inspired to pull out the best version of “Low Key Gliding” ever. And that's what I did.
So 80 seconds of my hit song “Low Key Gliding”, which made it big in 2020. There was a whole generation of young people between the ages of 16 and 25 that experienced “Low Key Gliding” for the first time back in 2020 during the pandemic. And now they've all grown up, and they look back and see this song with great nostalgia. It means a lot to ‘em. This symbolizes the pandemic and their earlier years. There's so much emotion tied up in this song.
So anyway, I posted this 80 seconds of “Low Key Gliding,” well filmed by my daughter, Hallie, and we watched it pop, we watched it go, we watched it do numbers. And let me just say the numbers for you here: Within three days, the video has 30 million views. Dagnabbit, I can't find my phone. I have a bed full of stuff, and sometimes my bed does not look like the guy who is the hole in the donut. It looks more like the guy that just ate a whole dozen of those donut holes, and there are crumbs all over the bed and in the car, but…I don't eat donuts. And I don’t eat donut holes. Anyway, here's my point…
30.2 million views in 72 hours, 4.9 million likes in 72 hours, 19,000 comments in 72 hours, and 595,000 favorites in 72 hours. So in case you're unfamiliar with the numbers in Tiktok, these are huge numbers. For the last three days, I've literally been the most famous guy on Tiktok, and here I am trying to be the hole in the donut. And I don't even know what that means, but let me just tell you the reason I'm feeling so upset right now.
Things have been going along well, haven't had a crash in at least three weeks. I found a little bit of stability. I thought I'd mastered the crash zone. But once I posted that video, I couldn't stop checking the numbers, and it's a very familiar feeling.Okay, there's a video popping off. Let me check what it did. Let me check that number. Let me get that little hit of serotonin, let me get that little hit of dopamine. And all it takes is one glance at the number and I get the little hit, which is the last thing I need as an addict in recovery, a guy living with severe ME/CFS, seeking to grow along spiritual lines. I don't need those little dopamine hits. I need peace. I need calm. I need connection. I need God. I need… to be the hole in the donut. That's what I want. I don't want little hits of the material world that will never be satisfied. I woke up on Tuesday morning excited but disappointed that it was only 19 million views. That's the kind of s**t we're dealing with here, man. You don't understand.
So anyway, it was about noon today. My Ativan window was clearly coming to an end, and I wanted to check my numbers one more time. And I did…and with just a glance on that phone, it touched my brain real weird and I felt that seizure come on, that crash. And right away I try to pretend that I didn't actually check my phone, convince my body to go back. “No, this didn't happen. I didn't do this.” Doing whatever I can to reverse this, but I was unable to reverse it. And it happened. My brain clenches up. My heart starts racing. My stomach gets sick. It lasts 30 seconds and it's over. And then I was like, “Damn it, Hal.”
This approach that I'm taking with Ativan is essentially using an addictive drug that loses potency to cover up very, very severe illness. I'm amazed at the low doses of Ativan. I'm taking a total of 1 milligram, which is small. I mean, just the recommended dose is 2 milligrams a day, and I'm taking 1 milligram. If it went on working like this for years and years, I'd be satisfied. But you never know. I have no idea how this little Hal Walker method, how sustainable it is. It's working today. At least I thought it was, until I had that crash…. a crash , maybe we should call it an episode. It's an undocumented episode that no one knows what the hell it is. No doctor knows. You know, my sisters know about it. You guys know about it.
By the way, I got some unfortunate news. Remember that post I did “Good News,” talking about how I was accepted into this hospice program? Well, it turns out it was too good to be true. (lol) I'm laughing because my mom likes the sound of my laugh, but it was too good to be true. They let me know a day later that… no, I mean, the woman came in and said, “You're accepted. You're accepted into the hospice program. There will be a nurse here on Friday.” And then when the nurse didn't show up on Friday, that was weird. And then on Tuesday, I called them, and eventually it became clear that I didn't have the proper diagnosis. Chronic fatigue is not a proper diagnosis for end-of-life hospice care. I'm not in an end-of-life situation. But somehow, at the time this woman took a real liking for me and was sending me into the program, but they changed their mind, and I am no longer in a hospice program. It was hugely disappointing at the time.
And on top of that, recently I had an appointment with the supervisor of my nurse practitioner psychiatrist. He made it clear that they can no longer prescribe Ativan to me. It’s a controlled substance and I don’t have a psychiatric diagnosis. A psychiatrist can’t prescribe that medication for a diagnosis outside of a psychiatric diagnosis. So another big disappointment.. like a huge disappointment. Like “What the fk am I gonna do” kind of disappointment.
But here I am figuring it out on my own.
Telling the whole world on Substack — that this boy is not well cared for in the medical world. I have poor insurance from the healthcare.gov. You know, I have a primary care doctor downtown at the local, (sigh) Axccess Health. She's a wonderful person, but, you know, I need someone who's ready to think outside the box.
The fact is, there is no known cure, there's no known treatment, no known cause, barely a diagnosis. There are a handful of youtubers that seem to know how to solve the problem, but everything they say is everything I've tried. And usually I feel like they’re talking about a different illness. They’re talking about “chronic fatigue.” Not whatever this beast I have is.
And it's a scary place to be. Let me just say that out loud. I'm scared. Right now, thanks to a half milligram of Ativan, I'm not as scared. Whenever it starts running low, I start getting scared. And as an addict in recovery, I don't like the idea of becoming a pill addict, but I don't see any other option. But I guess I’m gonna find out the other options when my Ativan runs out in a couple weeks. So stay tuned.
So…be the hole in the donut. Let's explore what that means and see if it has anything to do with any of this.
What I think it means is live in the spaciousness. Let God do most of the work. It's talking about humility, seeing things as they truly are. Be one among many. Reach out and see where you can help somebody. I’m saying this to myself, by the way, not to you. Hal, be the hole in the donut. Live in the spaciousness. Be willing not to know. Be willing not to know the answer. Yeah don’t pick up that bite of attention. Put the credit where the credit’s due.
My sponsor called me an “attention seeking missile” and he was right. Hey everyone, look at me. Look over here. Look at me. See what I can do. Watch this. Seeking attention. seeking validation. Trying to fill that God sized hole. But at the same time, I'm helping people. That's the curious part. Over and over again, thousands of comments saying, “Thank you so much. Hal, this song changed my life”. I'm gonna read a few of the comments for you, a few of the good ones. They're so amazing. Twenty thousand comments. I won’t read ‘em all. Let me just pull this up for a sec. There's this one I loved. Let me find it…
“Take us there. Magic Man, we need to escape for a few.” “Oh man, missing hearing this sound. Thank you so much.” “I feel like I just ascended. What is this instrument?” “Bro has been playing this since 2020 and he just gets better every year.” “I miss when nostalgic beats were TikTok’s primary trending music”. I know. TikTok has changed so much since back in my day. I'm looking for one in particular one… “I know this guy since like 2020. Crazy he's still doing it.” “It's sad. I've been following this man for years and I haven't heard this sound in a while. It brings so many memories and I'm so grateful I get to hear it again today.”“The way my mouth dropped. the sounds… amazing. Oh, my God.” “This scratches my brain in a good way. I don't know why, bro.”
There's one I'm looking for, but I can't find it about this guy who read a whole book while he was listening to Low Key Gliding the whole time. “Thank you for always trying to play such a breath heavy song for us with your condition.” “That song, when I first heard it so long ago, brought me a moment of peace when I needed it the most.” “Your songs, to this day and forevermore will hold a special place in my heart.” “Hal, you are an inspiration and an artist, bringing the music you make to all of us. Thank you so much for everything you've done. I hope this reaches you to tell you love you, man”.
So there's thousands of these comments of people expressing their appreciation. And there I am hungry for the numbers, making myself crash because I needed to check one more time.
But what I want to be is the hole in the donut, the empty vessel. The empty vessel. The flute, open and hollow, full of space. And the divine moves through the flute to make the beautiful, melodious sound. Yes, that's what I want! That's what I want.
That's what my sponsor says. He says, ”Feel the joy, feel the appreciation for the gift, read the comments, connect with the people, and then move on, live your life and let it all go. Be the hole in the donut. Hal”.
I don't have any answers for you, but I think I may have said everything I need to say. I'm in a very uncomfortable place. I'm in an uncomfortable place. It's scary. It's scary being so powerless over my body. I guess that's the hole in the donut. You know, there's no condition, there's no diagnosis. There's just what is. This is what is. This moment is what is.
It's just the hole in the donut. (lol)
I think that's it. There is no donut. There's no, there’s no anything but what is. And what is is the hole in the donut. It's all just fine. And all the scary thoughts that my brain comes up with, that's just the crumbs, that's the mess. The hole in the donut though…
I don't know, I'm gonna let you have the final word on this. Tell me in the comments, what the heck does my sponsor mean? “Be the hole in the donut.”
Thank you for listening. It's been fun. Thanks for letting me go on and on. Thanks for sticking with me. I really appreciate you. Sending love, sending all the best, sending care and love and appreciation.
I'll talk to you next time. bye, bye…
Hey… remember. Enjoy living that body of yours. It's not going to be around forever. May as well love it while you got it. Play frisbee, go on a walk, play ping pong, go dancing. If you can do those things, or roll around in your bed. Kiss your partner. Pray. Sit quietly. Wait. Be the hole in the donut.
Bye, bye. ❤️
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome! Today I’m starting a multi-part series called Autobiography. I enjoyed writing it. I hope you enjoy listening. Please click PLAY above for the full experience. (13 min listen)
Autobiography- Part 1
They call me Hal, but my real name is Harold. I was named after my dad who was named after his dad. That makes me the third - Harold Walker lll -- no middle name. When I was a kid, I was always embarrassed of the name Harold. It was such an easy name to make fun of and none of the other kids had that name, Harold. I recently made a friend who lives in central England and I love the way she says "Harold." It makes me realize that Harold is meant to be said in an English accent, not in an American twang. "Harold... Prince Harold." As a kid I always wished I had a cool name like Dave or Mike or Steve. Today I'm Hal, but Harold is in my blood.
I spent the first part of my life on the south side of Chicago. My dad, the minister of the First Presbyterian Church in Woodlawn, was perfect in every way. He never told a lie. Dad spent his life advocating for the poor, visiting the sick, taking care of his family and devouring every liberal book on theology that was ever written. When I think of my dad, I think of him sitting on a cozy porch with a cup of coffee reading some dense book that was more than my pot smoking, musician brain could handle. My dad was a man of deep faith, but when I’d ask him about God, he’d give me a 15 minute sermon and two books to read.
Most of it went right through my ears... and I’m not much of a reader. But my dad was my biggest fan. He’d travel all over Ohio just to see me play the harmonica.
My mom, an ex-republican from Oak Park, devoted her life to making art and creating a beautiful home for her family. For years, she put dinner for six on the table every night and it usually included some amazing dessert which was her specialty. Today, my mom is still living in the house where I grew up over on Beech Drive. She stops by occasionally to give me a hug and a kiss and to plead with God that someday I get better. She wants to see her Prince Hal back on the stage making music, being amazing.
With two older sisters and one younger, I was the lone boy in the middle. I always kept myself just a little bit on the outside. I was the joker and the tease. I remember one time my dad saying, "Son, can you ever be serious for just one moment?" At the end of my senior year, I was voted best personality of my high school class. I was so surprised by this outcome that I felt it must've been some sort of joke on me. From an early age, I suffered from insecurity and fear of conversation. Small talk and mingling at coffee hour or happy hour has never been my strength. But put me on some kind of a stage and it becomes a whole different story. The headline in a 2010 Scene Magazine article about my music called me a "folk charmer." They were right. I was a people pleaser to the core. I could say just the right thing at the right time to get everyone in the room to like me. Currently living with severe chronic fatigue syndrome, I can see now how exhausting that was.
The Walker family lived in a brownstone apartment on the corner of 58th and Kenwood in Hyde Park. One time my dad and I got held up at gunpoint while we played catch in the grassy lawn across the street. In 1971, our family was featured in the Chicago Tribune for hatching and raising a bob white quail named Arnold. We started with six eggs in an incubator, but Arnold was the only one that hatched. In our city apartment, my whole family learned to love Arnold's familiar call. "Bob White, Bob White." (whistle)
In first grade, I was at church running full speed during coffee hour when a large oak coat rack tipped over and fell on top of me. Though a big brass hook just barely missed impaling me, the heavy oak structure fractured my left femur and I was rushed to the hospital. At 6 years old, I spent Thanksgiving and Christmas alone in traction at Michael Reese hospital. I remember growing a sweet potato plant and writing an illustrated book called, Teddy Goes to the Hospital. My older sisters tell me that I would call home in tears saying that the food tray was out of reach and that there were no nurses around to help.
In September of 1973, my dad got a job as the minister of the First Presbyterian Church in Kent, Ohio. Our family packed up the red Volvo and moved east to a little college town called Kent. Just a hop, skip and a jump up the hill from Longcoy Elementary School, the Walker family put down roots in a lovely ranch there on Beech Drive, a street that had no need for sidewalks.
While my elementary classmates Mike Gilcrest, Dave Prendergast and Tim Patitsas were having epic touch football games down on Ada street, I became best friends with my next door neighbor Georg. Georg and I invented games. We created a nine hole Frisbee golf course in our back yards and a secret Nothing to Do Book Clubhouse in my basement. Georg's family was from West Germany and his mom drove one of the original VW bugs. Their house smelled like german chocolate and waffles and they usually spoke German in the house while I was over. Georg was two years older than me and I always felt like he was the smarter, more inventive one. But looking back, I see it was our joined forces that made our creativity so unstoppable.
Georg and I had a bit of a breakup when I went on to junior high school, I became friends with Dom Mandalari and I'm not proud to say we used to make fun of Georg from a distance. But I'm glad to report that Georg and I are still friends today. Currently, his daughter Elanor is working on a documentary about me called Living in a Body. Today, Georg is one of my favorite people on the planet.
Throughout my childhood, our family spent at least two weeks every year visiting my dad's folks who lived up on Red Mountain overlooking Birmingham, Alabama. These were deeply formative times in my life. With no seat belts, the six of us would pile into the station wagon and drive 14 hours south. Sometimes, we'd break up the drive with a stop at the Holiday Inn in Bowling Green, Kentucky. My mom was the master of packing a cooler full of meals for the drive. I'll never forget those picnic table lunches at the old rest areas along 71 and 65.
My dad's parents, who we lovingly referred to as Granny and Grandad, owned a stately home on the dead end section of Lenox Road on Red Mountain. The neighborhood up the hill was full of incredible mansions over looking the city and the woods behind their house was full of snakes. Sometimes, those snakes would find their way into grandad's cricket filled garage under the house. He'd just knock 'em over the head with a shovel. I, on the other hand, was nervous to grab one of the crickets in the jar to put it on a fishing hook.
As the only boy in my family, I had the very special privilege of spending a couple days every year with Dad and Grandad out at the lake. From the old cobweb filled dock of boats with small engines, we'd head out early in the morning to fish for bream and sometimes trout . After a long day in the sun, eating Vienna sausage on white bread and drinking Coca-Cola out of a glass bottle, we'd come home with a big mess of gutted and cleaned fish ready for Granny to fry up in the griddle. Corn bread, black eyed peas, collard greens, tomato slices, and wedges of ice berg lettuce were the standards around that Birmingham table. The chocolate cream pie that granny served for dessert was the best dessert that anyone has ever tasted.
Our playground every summer in Birmingham included Redmont Road which was a winding hilly road of mansion-like homes that overlooked the city. There was very little traffic in the neighborhood and the streets were nicely paved with smooth blacktop — perfect for downhill skateboarding. While my three sisters did things that sisters do, I would go off on my own and spend hours on my old school (1970’s) aqua blue skateboard slaloming down those hills. Over and over I would walk to the top of Redmont Blvd. and choose my route down. For a fast adrenaline-filled ride, I could make the risky turn onto Lenox. I remember a couple significant wipe-outs going that way. For a long slow ride though, I'd just wind down Redmont, past the thick forest and the rock wall practically all the way to Altamont Park. These hours by myself on those hills were the most formative times of my childhood. The combination of the southern breeze on my skin, the summer quiet of the mountain, the dense scent of the southern woods and the freedom of the ride touched me forever.
Get full access to Living in a Body at halwalker.substack.com/subscribe
On Oct 31, I recorded this in one take into the microphone with no edits. I hope you’ll take some time to slow down and listen. (17 minutes). The full transcript is below, but the audio is what I suggest. ❤️ Hal. Big thanks to Cameron Mack for the photos.
Good News
Hey, we're back.
My name is Hal, and this is the “Living in a Body” podcast.
For those of you are that are new, I'm Hal Walker. They call me the ‘slow talker’. Kind of a legend in my own head. (lol…) Sorry. Actually, just a humble guy. Mostly bed-bound, trying to make it through some very challenging circumstances. Living with a brutal version of ME/CFS, myalgic encephalo-f**n’-myelitis, also known as chronic-fk you-fatigue syndrome.
Just so you know, this podcast does not usually have bad words in it, but I'm in a mood, so you'll have to apologize for me…. Or so I apologize ahead of time, I mean. Today's episode 95 is called “Good News.” Gooood news. The subtitle is, “…But There was a Hat. Where's the Hat?” It starts with a story. It goes like this.
So there's a mom and a son, a young son hanging out at the beach. The mom is all dressed up with her nice sun hat and her very appropriate swimwear, covers up nicely. They've got their sunscreen on. They've got their little lunch bag and sand buckets, and the little cute boy is dressed up in the sailors outfit. He's absolutely adorable. He's got a sailor's hat, little blue sailors suit on and the day is going swimmingly. Then a big wave comes along and sweeps the boy into the sea, and the mom freaks out, as you would expect any mom to do. “Oh, my god, I can't swim”.
“My son, my three year old son, has been swept into the ocean, and he's drowning, and I can't swim!” And fortunately, fortunately for everybody, there was a lifeguard who popped up out of his chair, swam into the water, saved the boy, brought him back onto the shore, reunited him with his mom, and the mom says “Oh, but he had a hat.” (lol) That's the story. “Oh, but he had a hat. Where's the hat?”
I'm not sure exactly how this story relates to my story, but I heard this story this morning and it made me smile. It's a story about being grateful for your son's life being saved, but then complaining to the life guard because he lost the cute little sailor's hat.
I had an amazing experience yesterday that I'd like to share with you. It begins with a friendship that I made last year with a woman named Annette who is a Quaker. And as you may know, I have high regard for Quakers. And if you know any Quakers, they're a special sort. They're a special sort. And Annette is a special Quaker, among other things. She reached out to me when I was quite unwell last year and asked if she could visit. And she visited, and we sat quietly together in waiting worship, waiting for the still, small voice, and we did this day after day, week after week, as she would sit by my bedside. We sat and waited.
Annette and I became really good friends. We discovered that we have a similar sense of humor. We discovered that we have a similar outlook upon spirituality and God. We just discovered that we like each other, and it was, it's just been a real blessing. And then when all hell started breakin’ loose, Annette became a very important role in my life, which is kind of like a health advocate. She never asked for the job. She never signed up for the job, but she showed up. She showed up and started helping. And Annette, just so you know, I am forever grateful. My whole family is forever grateful. You are a life saver.
I told Annette yesterday, “Annette,” I said, “Annette, I don't know where I'd be without you. I would probably be destitute, living in a cardboard box, barely surviving”. But that's maybe an exaggeration. The point is, Annette has been a real blessing in my life. She has witnessed the… she has witnessed the difficulty of my situation, the fucked-ness of my situation.
You know, there are times when I say to myself, “Hal, you're fucked”. My sponsor doesn't go along with that. He said, “Hal, God's got a plan. Look for the good. Trust God. Keep asking. Stay open. When one door closes, another one opens”. But honestly, if I'm being truly honest, I have this general sense that I'm fucked. (lol)
Keep it light. Easy does it.
Anyway. The point I'm trying to make is; Annette witnessed the fucked-ness of my situation and she started taking action. She reached out to an organization called Crossroads, which is an organization for palliative and hospice care. She made a connection with them and scheduled an interview and yesterday a very kind woman came into my home and started telling me about Crossroads. Right away, she informed me that the palliative end of their organization is not currently running, so it's strictly hospice.
I immediately thought, “Well, I don't need hospice. I'm not dying”. But looking at my situation, from what Annette shared with her and from what I shared with her, she felt that I may be a candidate for this hospice program. She told me about it.
Apparently a nurse would visit once a week. Nurses would be on call 24/7. I could have a nurse's assistant come a couple times a week. There was counseling, grief counseling, and all the medications would be paid for, and I was waiting to find out, “Okay, who's paying for all this?” And she said, “Well, your insurance pays for it all”. And then I chuckled (lol) because she doesn't know my insurance.
I have the worst insurance possible. I go to healthcare.gov and buy the cheapest one there is because, for the most part, I have found health insurance to be useless for ME/CFS. There are very few doctors who have a clue. So why buy a bunch of healthcare insurance when no one knows anything? I'd rather spend my money on the out of the box thinkers who are willing to throw random s**t at you.
(I'm sorry about all the language today. lol. Normally, I'm a very clean cut guy, kind of an angel. I must be in a mood. Anyway.)
So I said, “Who pays for all this?” And she said, “Yeah, your insurance covers everything.” I said, “Well, my insurance won't cover it.” She said, “let me look into it.” She had me sign a couple papers just to make sure I was interested. I said, “Yeah, I'm interested. I'd like to find out more about what this is all about.” She went out to her car for about a half hour while Annette ran to the CVS store, and she came back in a little while with a big smile on her face and said, “Hal, you've been accepted. You're enrolled! You're enrolled in Crossroads hospice.” (lol)
I thought, and I said, “You mean my insurance is going to pay for this?” And she said, This is what she said, listen, listen closely to this. She said:
“Well, no, your insurance is not going to pay for it. But for some people whose insurance doesn't pay for it, we like to pay for it”.
So, for whatever reason, this woman took a liking for me, felt like I was a real candidate for hospice and decided that the Crossroads organization would cover it. I was rather blown away. Like, when does that kind of thing happen? The day before, I cried for two hours about the fact that I am not being served. I feel like I do not have the health care that I need.
So suddenly, the lifeguard saves the little boy, brings him to his mother, and then the mother says, “But he had a hat”. And I'm not sure how that fits, but I'm over the moon about this, having a nurse come to my house, building a relationship with a nurse. Building a relationship with a doctor. Whatever medication I need. But the reality is, it's hospice. They're not digging in to find a solution for ME/CFS. They'll do whatever they can to make me comfortable. I'm hoping I might be able to educate them. But they're not ME/CFS specialists. They are probably very kind, very generous, Northeast Ohio nurses and doctors. Let's hope that they've even heard the word myalgic encephalo-f*g-myelitis, also known as chronic-fk you-fatigue syndrome.
There is no easy answer. There's no known cause, no known treatment. There’s a certain fucked quality. There is a certain fucked quality to this illness. However, as my friend Emma says, “This is why we're here, this path, this path that I get, this path, even though it looks fucked on the outside. this is the path where I get to find out who I am, my true self’. This is the path where I get to go in and find out the true reality of life, not the scary dreams that my mind makes up, the true reality, the wildflower reality, the reality of the trees and the mountains where life and death exist in harmony.”
Along the way, I get this beautiful little miracle, Crossroads that comes along, Stumbles into my house and says, “yeah, we'll cover it. No cost to you.” So I'll keep you informed about what happens. I wish I were saying that, never mind(lol). I wish I were saying that “it just so happens that Crossroads are ME/CFS specialists who are going to be in my house studying me and learning everything they can to know about this illness”. But that's just the missing hat. Otherwise, I've had a life saving experience. I have more people in my corner helping out, and I've still got Annette.
We're gonna start doing more quiet time together, because we've gotten so wrapped up in all the business of healthcare, advocating for my health care. So Annette, I'm waiting for you. I'm sitting here.
Anyone else too. Let's fill my house. Come on, people, fill my house with anyone who wants to do quiet time. I'm sick of it. I'm sick of all your racing. I'm sick of all your to-do lists. I'm tired of all your thinking that all your stuff is so important. (lol) We need to do some quiet time together, man. This is the serious work. This is the work. I believe it. Quiet time is the work that needs to get done.
I'm teaching my daughter 10 minutes of mindfulness every day, not every day, but every few days. It's the highlight of my day. I get to feed her this little propaganda for 10 minutes about how important stillness is, about how important quiet is, about how important sitting in community in quiet is, and how unimportant all your to-do lists are.
I didn't mean to get all preachy and bent out of shape about that, because I know your to-do lists are important, just as important as my to-do lists. But what I'm inviting you to do is come fill my house up. Anytime you want. Have a seat. You can sit downstairs, on the front porch, on the back porch, or right here in my bedroom. It's a peaceful, quiet place. You're welcome. You're invited. No talking allowed. Only whispering.
…and I may have just said a little too much in the heat of the moment.
The fact is, you are not invited. (lol) To just stop by my house anytime you want and walk right into my bedroom. Unless you are highly spiritually evolved, and know how to how to walk into a space without causing any commotion. In that case, you're totally invited.
This is a ‘no commotion zone’. I'm hoping those nurses I get from Crossroads are spiritually evolved. I may have to teach them.
Thanks everyone for listening to my goof, my goofiness today. I appreciate it. It's a nice break from all the scary ME/CFS business that I'm taking care of. I love you. I care about you. I miss you. I'm cheering for you. I'm cheering for you. I'm praying for you. Looking forward to getting to know you better. You know… you are me. I am you, you are me. Let's do it together.
Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
On Oct 20, I recorded this in one take into the microphone with no edits. I hope you’ll take some time to slow down and listen. (28 minutes). Thank you. ❤️ Hal
Keep it Light
Hello, friends. Hello, loves. Hi beauty. Hi, mom, dad, brothers and sisters. Hi, Hallie. Hi, everybody. Hi nieces and nephews, all my cousins, aunts and uncles and grandparents, all the ancestors. Hello, Goddess Lover, Earth Mother, Father Sky.
Hello, all the small critters and all the flying, soaring birds, and even the groundhogs. Hello! It’s me, Hal. Welcome. It's episode 94 and it's called “Keep it Light.” Stay in the moment.
I've had anything but a light last couple weeks, but I'm keeping it light. This could be a difficult Substack for some of you to hear, but I want to encourage you just to keep it light. Keep smiling, keep sipping on that tea. Keep aligning yourself with this moment, which is exactly the way it's supposed to be. I really believe that.
It’s been my most helpful tool lately, to keep it light. I smile and say, Oh, yay. I get to have this moment.Yay, I get to have this moment.
I have this desire to start using more affectionate names for the people in my life. I met this woman, Emma, who lives with severe ME/CFS in England. From the moment I met her, I wanted to call her Queen Goddess, Earth Mother. I'm realizing I don't have the time for not noticing the divine in everyone. I'm done seeing people through the chaotic lens of my critical brain, of my critical, judgmental brain. When you walk into my room, you are a divine light. When you listen to my Substack, you are a holy brother, a holy sister. Holy they/them/theirs. I have no more time to take it for granted. I'm so tired of my old way of thinking of it's not enough, you're not enough. I'm not enough. I'm done with it.
So anyway, after meeting this woman Emma a couple weeks ago, who has really been through it—years and years of just barely hanging on with ME/CFS—and basically talking about not doing, and the magic of not doing. And the spiritual gift of not doing. That’s been one of my big regrets with ME/CFS is that I didn't stop doing much sooner, like episode five or something is called “No More Striving.” Then I went on and strived for 90 episodes, trying to be amazing. Trying to get my story across, and here I am at the end of my rope, just trying to get one more out.
But anyway, a couple weeks ago, I told Emma, I said, Emma, I'm done all I'm done with all doing. I'm done with doing. And I sat on my recliner and I felt peace. I don't have to do anymore. I don't have to create. I don't have to do amazing things. All I have to do is be. And I told Emma, and she sent me this beautiful one minute and a half recording that I've been listening to several times to inspire me. Here's what she says.
Hi Hal, just a little cheeky message. I was really happy to hear that you were stopping doing, stopping all doing. It's not forever, you know.
But I was pleased, because being, you know, like being in being for a consistent time, that's where the magic happens. And that's so exciting. So while you think you're having the worst time of your life, you're actually at the doorway of the best thing that could ever happen to anybody in their life, finding their true true self, their true being, the God that lives within, God that is what you connect with in that space. I mean that's like being on the precipice of the highest human experience possible. So you know, it's quite a privilege to have met you at this time, I think. Anyway…
So I was sitting on my recliner, glowing, in my newfound determination to do nothing, thinking that I had finally beat ME/CFS. My attitude was finally ready, and by doing nothing, I would have no more crashes. And then I started getting ready for bed. And my daughter and her mom and I have started this book club where we're reading. What is it called? It's a great book. I'm halfway done with it. Where the Crawdads Sing. That's it. I was really enjoying that book, reading it out of my Kobo device, and I read about two pages of a kind of sexy scene. I didn't know they had R-rated scenes in Where the Crawdads Sing. I had no idea, but there it was, and a crash came on, and I gotta say, I was devastated. Minutes after I had had this realization that I had beaten it. I basically learned that reading is not an option, and that began a series of my 10 days of crashing constantly. Like I would say, probably within a week, 10 crashes.
If you don't know what my crashes are, read a previous episode they’re…It’s almost like a seizure. My brain does something weird, my heart speeds up, my stomach gets sick. It lasts for about 30 seconds, and then it's over. But I've had dozens and dozens of these in 2024 and each one has had devastating consequences. I don't know why they happen until it's too late, over and over again, I give it a cause, but never really understand, they come out of the blue. The only time I'm safe from crashes is when I'm on Ativan. I'll tell you more about that in a minute.
I had a crash one day, I was lifting a fork to eat, and I crashed from the weight of the fork. One day I was…normally after I crash, I get sort of a boost of adrenaline, and I'm free from crashing for about an hour, a couple hours. This time, I decided to use that freedom to go watch a little YouTube. This was insane. This was one I really beat myself up about. I had just had a crash. I was feeling crash proof because of the adrenaline, and I opened up YouTube, and guess what? Had a crash really hard where I really beat myself up for that one, like, You stupid, you motherfucker. That was not a light attitude, just so you know.
I basically haven't gone a day without a crash. One day I woke up, I was so weak I was scared to reach for the water, and there was loud leaf rustling outside my window. And then an airplane came by, and I feel like it was the sound of the airplane and the leaves that caused a crash. So I'm wearing noise canceling headphones now.
The most devastating one came just a couple days ago, and I was determined to go four days without a crash by doing nothing, having people feed me my food, just total light attitude like, Yay, I get to spend the day not moving my arms. By the way, I've lost most function in my arms unless I'm on Ativan. I can't write, I can't move water. I can’t. So anyway, a friend of mine was feeding me oat bran, and I said, Give me just a little bit bigger bite. And he gave me a bigger bite, and it was a hot bite. And as it went down my throat, I crashed. I took a light approach to that. I said, Okay, Hal, there's the crash. Keep it light. Just keep smiling. A few minutes later, I was voice memoing My sponsor to let him know what had just happened, using a very quiet voice, saying about two sentences and I crashed. A little while later, I attempted to eat a small piece of salmon, and even just putting in my mouth felt weird, but I put the salmon in my mouth and it made it down to my stomach, and then I crashed. That was three crashes in one morning. Never experienced anything like that. My light attitude turned into reaching for Ativan. I've been very resistant to using Ativan too much. I know it's addictive. I know it loses potency the more you use it. So I'm just trying to do it very conservatively.
But ever since this, these crashes happened around eating, I'm realizing some action needs to be taken. I probably need, or I'm certain I need, medical help, medical intervention, probably one of these nasal tubes, nasal feeding tubes. I've got a team of people trying to figure that out. Unfortunately, they're mostly clueless.
There are few if any doctors in northeastern Ohio that even know the word ME/CFS, you go into a doctor's office and start telling them about crashes, and they don't know what you're talking about. I went to a well-respected guy who sort of knows about ME/CFS this year, and he became basically said Here, let's give you a bunch of blood tests to find out if you have anything else besides ME/CFS, because if it's ME, I just can't treat it, I don't know how to treat it. So that's the kind of illness we're living with, millions of us, the millions missing. The doctors are clueless.
We have to take it into our own hands. You know, I call my ME/CFS friends to find out what they would do. And couple of them said, Hal, use the Ativan. You feel free to use the Ativan so that you can eat while, while you're figuring out what to do next, use the Ativan freely. So that's what I'm in now. I'm in this process of daily use of Ativan, trying to find just the right dosage that's not too much, but keeps me from crashing. Ativan has been a miracle drug, if it if it weren't addictive, and it's been amazing. I mean, I'm able to function, I'm able to eat, talk quietly. I'm able to be in a room with lights on. I'm able to do this podcast right now.
I'm able to go to the bathroom without assistance. So for now, it's a Saturday, and this is going to be a week of finding medical help. And believe me, I don't know how that's going to happen. Probably go to my primary first, see where she leads me. But the point is, I'm trying to keep a light attitude. Just keep it light. Keep smiling now.
You know, in the end, we're all just part of nature. We're all part of this amazing thing called nature, and we get sick and we die. New generations grow up, the old generations die. My grandfather, you know, that's one thing we don’t…we don’t call the ancestors into it enough. Calling Harold, my granddad and AlviDa, Lilian and Earl. They had this moment in their lives when they thought they were the kings of this world, kings of their families, kings of their household. And it lasted a split second. And now I was the king of the household for a little while. I was the king of this dysfunctional household here on 131 South Chestnut. We did alright, though. Now Hallie and Andy, they're the kings, kings and queens.
The one regret I have is that I don't get to grow up to see Hallie as an old woman. I really am dying to see Hallie as an old woman. Oh, my God, how fun that would be, but we don't get to do it. So we die. We die, and it's not that big a deal. You know, we feel the feelings. Up until the moment I die, I want to be keeping a light attitude, smiling, maybe some crying, a lot of hugging, lot of loving, lot of calling each other affectionate names, none of this b**t, holding back, I’m sick of it.
Oh, and by the way, I know what kind of funeral I want, and I'm gonna close with this. In case you don't know, I've become a Quaker. I found my home in the Quaker church. I found the Quakers first back in 1989 and I loved it. And then I got pulled into the Unitarian Universalist for about 25 years. And it was a job, a perfect fit as a job, it was the most beautiful community I could have ever hoped to work for, to be a part of. Some of my happiest moments in my life were in that church and at SI, but it never really felt like my spiritual home, to be honest. This year, I found the Quaker Friends meetings to be my spiritual home. I love it so much. There's a daily meeting out of Pendle Hill, which is a Quaker center near Philadelphia. I enjoy the central Philadelphia Quaker meeting on Sunday morning. I go out to Portland, Oregon, Sunday afternoon, sometimes San Francisco. And there's a Quaker sharing group that happens on Wednesday, that I've become close with, and I just find so much depth there. Quaker meetings are based in silence. Sometimes the whole meeting could be in silence, but it's called Waiting Worship. Waiting Worship, where we're waiting for the Divine to speak, waiting for the still, small voice to move. And these are a lot of these people have been sitting for many, many years, and when they speak, you listen, sometimes people will sing out of the silence. Sometimes people will sing an old hymn out of the silence. There's no orchestra, no band, no choir. It's just depth and silence, which is what I've been longing for my whole life. I wish so bad I could go to these places. I mean, I'm doing it from my bed on Zoom, and they make it a good Zoom experience. But I just want to sit in that Quaker meeting hall in Philadelphia or in Pendle Hill and soak up all those old smells, feel all the spirit in the walls.
Anyway, I want my funeral to be a Quaker meeting, a meeting for worship in the style of the Quakers, based in silence, concentric circles in Hobbs Hall. Annette will welcome and explain what a Quaker Meeting is, and then we sit in silence. And then you discern, is this message that I'm hearing, is it meant to be shared, or is it meant to be held to myself? And if you're moved to share, then you stand and someone will bring you a microphone, because I'm imagining it will be Zoomed. I'm hoping it will be Zoomed so everyone on Zoom can hear the message. And then you speak. You give your ministry, whether it be a story or a prayer or a song, however the spirit moves you. And I don't know how long this goes on, but it goes on till Annette shakes the person's hand next to her. That's what I love about what they're doing. There are no clocks. When Annette shakes the hand of the person next to her, then everyone shakes hands, and then they go drink water. Drinking water, that's what I want. Everyone drink water, and we'll have a meal of abstinent food. No, just kidding, you can eat whatever you want. Have a big party. I really wish I could be there.
I was actually thinking about doing this for my 60th birthday, but you never know. You never know if I'll be around when I'm 60, the way it's been going. But maybe Ativan will keep me going for a couple more years, or maybe once I get a feeding tube in, my body will get to rest the way it needs to rest, and I can improve.
All right, keep it light, everyone. I know this was kind of a…I threw a lot at you. I bet you hadn't expected to hear about my funeral today. But I love you.
Also, I recognize that keeping it light is a heck of a lot easier when you're when you've got a significant amount of Lorazepam running through your blood. Believe me, there have been some very, very uncomfortable times of great distress and suffering in many of my worst moments. But even then, keep it light. Keep smiling. I love you. I love you, brothers and sisters and lovers, friends, cousins, all the critters, angels, lights, the light. You are the light. You are the light, and I appreciate you sharing the light with me. Yeah, there's a lot of beauty, a lot of living I still want to do. There's so many stories I have to tell. I want them highly edited. I want them highly edited, not these off the cuff ones, but I guess off the cuff’s okay, too. For now. I love you. Stay in touch. Don't give up. Keep it light. Bye, bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Wildflower Stories
This Spring, I bought two packets of flower seeds off the seed rack at the Kent Natural Foods Co-op. With a vision of adding to my wildflower mix, I chose the giant purple zinnias and the bronze petaled sunflowers. A few weeks after planting the seeds, when the sunflower sprouts were just about 8 inches tall, a fat groundhog that lives behind my garage climbed up and over the fence and had itself a feast. It didn’t touch the zinnias, but the sunflowers were gone. As I rode up the stairlift that June afternoon, I cursed that groundhog and I wanted him dead. But then I remembered my own instructions... "Say yes!"
In my work as an artist-in-residence, I used to love making banakulas (pr. bah-nuh-KOO-lah) with students. It’s two shaker balls tied together with a string that you spin, throw and knock to make cool rhythms. We made hundreds of pairs of these things in schools all over the state of Ohio. With a banakula in each hand, I could get the whole fourth grade playing in unison some beautiful and satisfying syncopated rhythms. But eventually, with enough drops on the linoleum floor, banakulas would break. Too many times, I listened to students whine and complain, "Mr. Hal Walker, my banakula broke!" . When I'd had enough, I came up with some clear instructions. From then on, the rule was, "When your banakula breaks, say 'Yes !'"
These instructions baffled the students. “Why would you say ‘Yes’ if your banakula has just broken?” In my mind however, it was clear. I had no tolerance left for their complaints and I wanted to teach an important lesson. When your banakula breaks, you say "Yes" because the banakula has broken. There's no going back and there's no use complaining. It's time to get on with the business of making another banakula.
So the sunflowers were gone. I could either spend my afternoon cursing that damn groundhog or I could say “yes” and simply figure out what I was gonna do next. Admittedly, it took some time for my heart to heal, but eventually I got over the loss of those sweet little plants. I moved on. A couple weeks later, Merl, my next door neighbor, let me know that he had trapped the groundhog and relocated it out to the woods somewhere. I didn’t ask any questions. By that time I was happy with my garden full of wildflowers and a nice little crop of zinnias.
This year, the annual bronze petaled sunflowers were not meant to be. A big ol’ groundhog took ‘em out. Instead, the giant purple zinnias took center stage. This year, they were the stars of the garden. I hope the groundhog’s doing ok out there.
Back when Hallie was about five years old, I picked up a vagabond hitchhiker at a truck stop outside of Columbus, Ohio. Rainbow Jim and I had such a pleasant drive up 77 that I invited him to come back to my house to do some work for me. He had no other plans, so it worked out for the both of us. Jim was a kind, gentle and hard working soul that ended up living with Hallie and me for about two months. All that was required to keep him going was a case of beer after work every night. At the time, I was happy to provide.
Jim built a wooden slat fence around the yard with three gates. Thanks to that fence, my dog Nell got free of the chain and had about a quarter of an acre to roam. He tore a big hole in the back room and put in a sliding glass door. This completely reconfigured our house and revolutionized our connection with the backyard. Then he built a nice little platform deck upon which my wheelchair ramp is built today. To finish off his residency in Kent, Ohio, Jim painted the house.
As you might expect, Jim was missing a front tooth and had a bit of a beer belly. Though he drank way too much, he had the kindest smile and the warmest handshake of anyone I’d ever met. His great joy in life was running the "A" camp kitchen at rainbow gatherings around the country. (The A-camp is the only camp at a rainbow gathering that allows alcohol. It’s where Jim was the self-proclaimed host and the master chef.) A couple years after he left, I got a phone call from Jim from a motel somewhere south of here. He let me know that he was dying of cancer. That was the last I ever heard from my friend Jim. The fence and the deck that he built are still standing strong. They’re starting to show their age in a real beautiful way though.
Thanks Jim. You were a bit of a wildflower, weren’t you?
For as long as I can remember, my dad had a compost pile and a vegetable garden in the way back part of the property. That garden was his pride and joy. My sisters and I all fondly remember dad's familiar invitation, "Wanna go back and see my garden?" His specialties were tomatoes, yellow squash, zucchini and green beans. My dad wasn’t much of a handy man but he could jerry-rig a pole bean trellis like nobody's business. He used to put duct tape on his gardening shoes so they'd last forever.
About 20 years ago, I hired a concrete crew to remove a big section of my driveway and fill it with garden soil. I became a vegetable gardener and a composter like my dad -- jerry-rigged trellises and all. My specialties have been rainbow chard, beets, purple pole beans, cucumbers and tomatoes. But this year, I wasn't well enough to plant vegetables, so I spread wildflower seeds instead. This little patch of living color has been my pride and joy ever since. I love taking visitors out back to revel in its glory.
I'm different than my dad around shoes though. I once found a style of Ecco shoes that I liked so much that I bought four different colors of the same shoe. I have a history of being kind of extreme that way. I can’t imagine my dad ever doing something like that. He wore the same blue gardening shirt for 40 years. Just recently, my caregiver put a whole shelf full of shoes into a black plastic bag and carried it up to attic for storage. Pretty much bedbound with ME/CFS, I don’t wear shoes much these days.
For about a year now, every night I write a list of ten things that I’m grateful for. I used to make a numbered vertical list, but my friend Carol gave me a different idea. Instead of vertical numbering, I separate each grateful word, phrase or sentence with a little bullet mark. Continuing on that same line, I write the next one. Last month, I bought a blue spiral bound notebook that I’m filling up of gratefulness. Using Carol's idea, I now have many pages that are completely full. No matter how rough the day has been, (and there have been some rough ones) I search out the day for the “Yeses.” Tonight’s gonna be easy. I’ll start with this one…
• Spending time with Hallie taking pictures by the wildflowers •
It occurs to me that every one of us is a bit of a wildflower — Merl, Jim, Hallie, Carol my dad and the groundhog. Each one of us special… reaching to the sun. And even though we do what we can to deny it, we live in the wild. No matter how hard we try, we can’t escape the rigor of the natural world. I’m finding it out first hand as this illness sweeps through my life like a rogue wave.
I'm grateful for the wildness in my life today and the wildflowers that keep showing up on my path. I hope I can pause long enough to recognize their beauty. I hope I can care deep enough to honor their presence in my life. I hope I can love wide enough to do no more harm. May we stay open to the growing and the shining that we get to do right along side each other as we reach for the sun - you, me, the cosmos, the dandelions, the Black Eyed Susans, the zinnias, the sunflowers and all the wildflowers among us.
Get full access to Living in a Body at halwalker.substack.com/subscribe
My life these days is that of a monk. Cloistered and terrorized, I'm a fledgling monk of the Taoist-leaning Quaker variety. Believe it or not, I'm the only one in this particular local order. With the help of a few trusted guides and a robust 12 step program of recovery, I'm sort of blazing the path as I go. When I'm not desperately trying to figure a way to get myself out of this situation, I breathe, I pray, I listen, I wait and I smile. I spend most hours of each day in silence. If there's such a thing as grading in the monastic life, my sister tells me I'm getting an A+.
To be clear, contemplative living was not my first choice. I'd prefer to be growing spiritually on the ultimate field or on a mountain trail or in front of a gymnasium full of elementary school students. But they say "grow where you're planted" and it turns out, this is where I'm planted. After all my hard work at being amazing, after all my striving and all my reaching, this particular path got especially chosen for me. The path of humility. I'm not sure who did the choosing, but there's a mean-spirited, complex, multi-system chronic illness involved. She goes by the initials M.E./C.F.S. and she's been my bedmate for years.
I live in luxury accommodations over here on South Chestnut Street. I know it's not your typical setting for a monk's life, but I'm grateful for the amenities. Come to think of it, the number of electronic devices by my bedside alone may disqualify me for official monkhood. But full disclosure, I never actually applied for the job. I've got two electric wheelchairs, an adjustable bed, a stair lift, a wicker recliner, a live-in caregiver and a wide array of connections to the outside world. From what I hear, most monks get nothing but a wooden stool.
I remember visiting an actual monastery when I was a much younger man. Mostly, I recall how scared I was of the quiet. I remember the suffocating thought of having to live in such tranquility forever. On that summer afternoon somewhere in Ohio, probably high on coffee and muffins, the lack of distractions felt sickening to me. From where I lie now though, in this darkened room with silencing headphones and an eye mask, the natural setting of that monastery sounds heavenly. My windows are covered. My view is mostly of the inner world -- a dense swirling soup of chronic illness. I spend my days hungrily seeking the stillness that lies hidden somewhere beneath the internal chaos.
Let me tell you a little bit more about my bedmate, ME/CFS. Honestly, to call her my bedmate is a bit misleading. She doesn't actually live in my bed. She lives in my body. But except for the fact that I'm sick all the time and I barely have the strength to whisper, there’s no proof that she even exists. She’s a phantom complex of subjective symptoms that me and millions of others have come to know as a horrible illness called M.E. I guess depending on how you look at it, she is me. Seeing it that way, I should probably figure out a way to make friends with her. I'm workin' on that, but for the sake of the story, I'll refer to her as the scary monster that's terrorizing me from underneath my bed.
I carry with me a constant underlying fear of her attacks and I never know when the next one's gonna happen. It seems that she strikes when I've broken the rules; but unfortunately, after all this time, she's never actually told me what the rules are. When I think I've finally figured 'em out, she changes 'em without asking me. So I walk on eggshells and I push the boundaries. I'm in a perpetual state of hoping that maybe this time I've outsmarted her. Usually I'm wrong.
Over the months and years, I've survived many dozens of her attacks. Because of their sudden and unpredictable nature, I call them "crashes." Each of these crashes has been a specific event with a date and a time. I used to mark them on the calendar, but today, due to their frequency, I just shake my head in weighty acknowledgment of my powerlessness. Each crash lasts only a few minutes, but the long term consequences are devastating. Within a day or two of the event, I'm left more disabled than I was before. It's been a brutal and traumatic process of loss. Crash after crash, my body's been slipping off into the realm of the spirit.
Like a good monk, I alternate between vowing to be perfect and saying, "Screw it. I'm just gonna live my life." With all my first hand experience of the cruelty of this particular monster though, I've regretted having ever taken the latter approach. These days, I lie awake at night trying to breathe away the fear of the monster. I use a variety of bedtime mantras to get me through the night. "Total surrender. No resistance" is one of my favorites. A half milligram of Ativan works even better. Sometimes I go under the blanket to kiss my own knees and cry. It soothes me to whisper a familiar message from my dad. He says, "I love you, Hal. I'm here for you. I'm so proud of you, son."
I woke up on Sunday morning grateful that I'd finally fallen asleep the night before. It had been six days since the last crash and I was relieved that I made it through one more night without one. Within minutes of becoming conscious however, at 6:00 in the morning, I felt the sudden onset. It began with a distant quiver in my chest which soon turned into a racing heartbeat. On this occasion, with the presence of a monk and the submission of a beaten man, I remained calm while I watched the whole thing come and go. I didn't text my caregiver. I didn't call my sister. I just lied there and felt... as a tear welled up in my eye .
The same story has happened many times. As the monster slinks back to her place under the bed, she leaves a little shot of adrenaline in my blood which actually makes me feel better. My breathing calms, my heartbeat steadies and my nervous system relaxes. I've learned that this feeling of wellness after a crash is the calm that precedes the storm. As the pattern goes, after a wired day of adrenaline, I experience a deep drop into weakness on the day after. Then after a day or two of grieving the loss, I settle in to the new normal. Over and over again, I adjust.
Yes, 2024 has been the “year of the monster," but it's also been a year of personal growth. My body is feeble, but my spirit is strong. Having been forced to slow down so radically has given me time to recalibrate my whole code for living. With special thanks to the monster, I'm a different man today than I was. Values such as honesty, humility, gratitude, purity, unselfishness and love have become the guiding principles of my life. I'm far from perfect, but today, instead of yearning for fame, I'm practicing quiet. Instead of lusting after what's not mine, I'm opening my heart in search of the divine. Instead of grasping for more, I'm sitting with the discomfort of what is. In a life now led by stillness, I'm getting glimpses of contentment like never before.
That is, up until just a few days ago. You see, last Friday, I went viral on Substack. By Tuesday, my “Note” had gotten 1500 likes and 47 restacks. With 200 new subscribers for my publication, I got a taste of success on this “powerful platform of the cool people.” Reminiscent of blowing up on TikTok in 2020, I'm faced with a familiar struggle. My soul yearns for wildflowers but my brain craves that little notification bell all lit up with numbers on the screen. Whereas a week ago, I was in full-time monk mode, now I can't stop reaching for my phone in search of more.
Starving for anything that feels good, my hunger is insatiable. But rather than filling the soul, the numbers are like ashes in the mouth. The craving pulls me away from the direction of the spirit and leaves me unsatisfied. On the other hand, there's so much goodness in the creative process and I’m so grateful to have an audience. So where do I find the balance between the Source of all Being and the undeniably addictive nature of social media? With the way my nervous system’s been runnin’ lately, I better be mighty cautious while I’m doing the research. In the household of the monster, anything beyond prayer and meditation is questionable.
In case you haven't figure it out yet, there’s no actual monk and there isn’t a monster. It’s a real life story about a spiritual guy who's stumbling along on the path of severe chronic illness. I wonder where the story goes next. We can all be certain that there'll be some tall mountains to climb and probably deep valleys to trudge. I imagine there’ll be some grand views along the way. Who knows? Maybe the monk and the monster’ll find their way as the most unlikely of friends. Whatever happens, I hope we all join up on the mountain, hands on shoulders in a big circle, with all our beauty and all our brokenness, holding each other, loving one another and making sure everyone’s ok. I hope to see you up on that mountain. Be sure to wait for me if you get there first.
P.S. I saw this photo on a post by Madelleine Müller of The Bed Perspective and it touched me so deeply that I wept. I cry easy. Also, thanks to Scott Mulvahill for playing bass with me on the podcast recording.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Thank you for your patience as my pace for producing these episodes has slowed. I appreciate you. Please press PLAY above to hear the podcast version of this episode. Enjoy.
The Fleeting Moment
My ever changing wildflower garden is turning into a jungle. The rain storms of the last week hit hard and left some of the more elegant petals mangled and disfigured. The early June days of delicate poppies and perfectly placed cosmos have given way to a tangled barrage of black eyed susans. They’re taking over. One passing day at a time, this garden of photogenic perfection is becoming a dense forest of disorder. With some humility, I'm beginning to acknowledge the hazy distinction between a wildflower garden and a plot full of colorful weeds.
This summer, there have been too many blooms for me to name each one individually. As I watch my little friends reaching for the sun, I've noticed how each one is a miracle. I'm glad to have captured a few of my favorites for digital eternity. This Sony Alpha telephoto lens of mine loves to pull focus on the intricate details of the leading characters in the garden. For the first time in my life, I'm fascinated to discover the stigma and the stamen, the pistil and the petal - words I vaguely remember from Mr. Lambert's life science class, but never put into the context of real life. The photos I've taken may last for years or even generations, but truly, the moment is fleeting. The flower shines and then it's gone -- kind of like you, me and Mr. Lambert.
When Hallie was in Elementary school, on the last day of school, we'd go to Katie's Corner to celebrate with ice cream. Every year, I'd break the news, "Enjoy it while it's here, Hallie. Snap your fingers and it'll be September." She didn't like hearing that, but it was always true. A snap of the fingers later, we'd be taking her picture with a backpack for the first day of a new grade in school. Now, a snap of the fingers later, she's 26, married and living the good life in Brooklyn, New York. Somehow, I turned 58 this year and it’s already August. Damn. Who knows what another snap of the fingers might bring. I think I’ll take my own advice and enjoy this day while it’s here.
As I navigate the reality of living with a brutal and seemingly progressive version of ME/CFS, I'm more aware than ever of the fleeting nature of my current experience. They say, "this too shall pass" and I'm finding out they were right. Six days ago, my symptoms were less severe. Two weeks ago, my symptoms were less severe. Three months ago, my symptoms were less severe. One year ago and ten years ago, my symptoms were less severe. For me, it’s been a 32 year progression of downward steps. I’d do anything to go back to the previous step, the previous baseline, but for today, it doesn’t seem to be an option. It seems my best option is to find my home in this moment — this body, these circumstances, this weather, these feelings. The alternative, I guess, is to yearn and to grasp, to fear, to resent, to regret and to suffer. I've certainly done my share of all those things.
I'm more committed than ever to the practice of sitting with the feelings and being with what is. Though the sensations in my body often make me desperate for an escape, my friends remind me that there is no escape. So I practice. All day long. I smile and I practice -- letting go of the past (and by the way, it's all the past), saying yes to the moment (and all I have is the moment) and doing whatever I need to do to stay out of the future. Generally, the current severity of my symptoms determines my success in this practice. It's remarkable how much easier it is to live in the moment when the illness eases up even just a little bit. On my most severe days, I hang on twelve minutes at a time, always just one thought away from panic and despair. Today however, I'm quietly content with this slow, soul-growing path that I’m on. One day at a time, I’m learning to take it as it comes.
In the last few months, I’ve received news of the deaths of five men in my life. Unexpectedly, the world faced the sudden loss of Steven, Kevin, Max and Doug. And after an extended illness, we lost Maurice. Never to be lived again, I cherish the fleeting moments that I spent with each of these men.
I remember Steven’s vulnerability when he expressed appreciation for the big hug I gave him that Fall day before church. I had just learned of his purchase of a new home and he seemed glad to have a new friend. I remember the day that Kevin installed the threshold ramps in two of my doorways. Those ramps have significantly improved the quality of my wheelchair life here at home. I can still picture Max sitting in the back of the church manning the sound on Sunday morning. From my place on the chancel, I'd give him a little nod of the head to fix the level of the microphone. I remember being thankful that he knew just what I meant by that nod. I remember Doug holding my head for hours last January with the subtle movements of cranio-sacral therapy. His hands helped me feel safe with the scary monster of ME/CFS living inside my body. And I remember being enamored with the feeling of Uncle Mo's big strong chest against mine as we enjoyed a brotherly hug between two townies at the co-op.
And then just like that, they were gone.
I'm glad to be a human on this earth for a little while. Little by little, I’m discovering that I’m not as invincible as I thought I was. I very well could've died in that big wave back in 2013, (See Bonus Life) but I didn't. I got to walk Hallie down the aisle. I got to hold my dad’s hand as he was dying. I got to fall in love. I got to become TikTok famous. I got to win 2nd place in a table tennis tournament full of 10 year olds. I got to meet Peggy Munson in person. And I got to plant a wildflower garden. Today, I’m grateful that I get to tell a little bit of the story.
It’s wild being one little part of this thing called life. For thousands and thousands of years, miracle bodies have been being born, aging, getting ill and dying. I’m sure glad to have been included in the cycle. But I need to be reminded that my true nature is something so much more vast and more subtle than this body. I want to live in that vast and subtle place. I want to make my home in the realm of beauty, where each moment is another gift. For now, I’ll rest my mind in the whisper and I’ll wait.
May we all find peace in the ephemeral nature of all things. May we all enjoy the ride of impermanence. ‘Cause snap your fingers and it’ll be September.
Have fun. Bye bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
In an age of constant movement , nothing is more urgent than sitting still. ~ Pico Iyer
Urgent: Do Nothing
The highlight of my days this week has been wheeling out to the old vegetable garden which I converted into an Ohio wildflower garden earlier this year. The explosion of blooms is just beginning. I love to sit in my wheelchair and gaze over the short fence at all the delicate shapes and the vibrant colors. I love to see the white moths flitter from petal to petal and play in the breeze. I love to watch the tall waves of green move with the wind. Whenever I see a bee land on one of the flowers, I feel a great sense of satisfaction like I did something really important when I spread those seeds back in May. I hope someday to learn the names of all the flowers, but for now, I just like to look around and pick out my favorites.
It has occurred to me that I was never that interested in flowers before. I didn't have time to be interested. It took a nasty illness called myalgic encephalomyelitis, also known as chronic fatigue syndrome, to slow me down enough to care. I hate this illness, but now those flowers touch me in a way that I've never been touched before. Their beauty has at least once brought me to tears. Sometimes, I picture myself walking in a whole field of Ohio wildflowers and I think about what I've been missing my whole life.
Lately, I've been receiving an urgent message from all the forces of the universe. As if offering an easy solution to this complex illness, the voices simply suggest, "do nothing." Backed by the power of all that is, they say, "just be." Then ironically, they follow it up by insisting that I compose an eighteen hundred word essay on the subject. Juxtaposed between contradictory instructions, I'm busy crafting words in shrinking windows of energy while attempting to adopt a life-saving practice of total rest. It's a treacherous line that I walk here with prayers that my love for writing doesn't drive me into still greater depths of illness.
For a driven, talented and creative "human doing" like myself, being mandated to "do nothing" seems like cruel and unusual punishment. With desperate pleas to the unknown, I cry out, "But you don't understand! I'm Hal Walker. Haven't you seen me play the banakulas!? If I do nothing, where will I find my purpose? How will I serve my community? How will I prove to the world that I’m amazing?" After an extended pause, nature responds with stoic clarity, "You're not amazing, Hal. I'm the amazing one. You're just another one among the millions. Now go lie down, get quiet and start doing nothing."
So that's what I did. For a few days before I got pulled into this essay, I did nothing. I spent full afternoons in quiet time -- reclined and smiling. I ate a few meals, I made a few phone calls, I read excerpts from spiritual literature, I took cold showers, I cried, I rested and I smiled. Mind you, I wasn't smiling because life is easy and I have everything that I want. I was smiling because those are the instructions that I've been given. Through all the discomfort, the still small voice just keeps repeating, "Say ‘Yes’ to what is, Hal. It’s your best option. Breathe, relax and smile."
As I gradually awaken to the brutal and unforgiving nature of ME/CFS, I'm taking more seriously this call to do nothing. I can see the life giving, soul growing benefits of radical rest, but like an addict, my brain craves activity. In search of anything to escape the moment, I hunger for projects, connection and mindless distraction. Housebound and mostly bed bound, my longing to do the things that I love is stronger than ever. But as my condition worsens, I have less and less say in the matter.
These days, it's clear that playing the piano or riding my scooter down to the river would be risky and unwise. In compliance, I ride a wheelchair around the house and live mostly in silence. I never stray too far from the bed. On the other hand, I'm well aware of the risk of conversations with friends, writing this essay and scrolling on Instagram, but I do it anyway. Most of the time, the ideal of complete mental and physical rest is more than this 58 year old lover of life is willing to take on. Upon each setback however, I reconsider my willingness.
You see, post-exertional malaise (PEM), the poorly named defining characteristic of this poorly named condition, means that activity of any kind, whether it be mental or physical, can make the condition worse — possibly permanently. Having experienced many dozens of these worsenings over the course of weeks, months and years, I still haven’t learned the rules for this beast of an illness. If I knew the rules, I assure you, I'd follow them exactly. But the only rule that ME/CFS offers is the nearly impossible: do nothing. Everything outside of those bounds, I do at my own peril.
It's the only illness known to man in which the entire severe population is thinking, "Damn. If only I'd started doing nothing sooner. I could've saved myself from so much suffering." Truly, if I knew back then what I know now, I'd promptly drop everything and spend my life sitting contentedly under a tree -- breathing softly, welcoming friends and trusting God. I guess I know my marching orders for the day -- without any actual marching, that is.
Last Thursday, I was glad for an extended afternoon quiet time with my mom. We basked together in the glorious memory of my daughter’s wedding. Mom's not so comfortable with silence and I've barely got the lungs for speaking, so it makes for some interesting mother/son dynamics. With much love, I tolerate her barrage of motherly questions and she tolerates my one word answers. During our visit, as the sun moved into view in the west, mom knitted and sent a few texts while I gazed off into the trees, smiling. I’m grateful for my mom’s visits. I know how much it pains her to see her only son living with such a mean spirited illness.
I'm also grateful for the other visitors that sit quietly with me throughout the week. I appreciate how sensitive they are to my nervous system's need for low volume and a slow pace. I like to think that I'm doing some service by offering a peaceful place to sit for a while away from the pressures of the fast paced world. From where I lie, I'm in awe of the way most people are moving so fast out there. I watch the way cars fly down my street. That used to be me — always on the move. Now I'm at home holding down the fort for anyone out there who could use a little bit of slowing down.
After my mom left, at nine o'clock that night, I felt so good about having had a full day of self care and peace. So I decided to treat myself to half an episode of "The Bear" followed by a few minutes of the 2024 presidential debate. What I really needed was one more round of quiet time, but instead, I found myself indulging in loud, edgy television and a God awful display of modern day tomfoolery. Yes, the old familiar me that does self harming behavior in search of instant relief took over for a little while that night. Like the rest of the modern world, the ever available screen is my current narcotic of choice.
Once I got my fill of political angst, I shut down the laptop, turned off the lights and tossed myself to sleep. As so many times before in the course of this illness, I closed the day with a little conversation with my dad, "Hey dad. I did it. I made it through another day.” “I’m so proud of you, son. I know it’s not easy.” “Goodnight dad.”
When I woke up at about five am on Friday morning, the first sign that something was wrong was the louder than usual ringing in my ears. My breathing was labored, my arms were heavy and I felt that deep aching weakness in my core. I knew instantly that I was in yet another crash - an overnight sudden onset of intensified symptoms. In the last few months, I’ve experienced dozens of these and each one is as disheartening as the last. "No! What did I do wrong?! Was it the TV show or the conversation with my mom? Did I sit on the porch too long? Were the passing cars too loud? Why does it keep getting worse!?" Of course, there's no way to know why this illness does what it does. Nobody really knows. I may be a fool to think that I can somehow control the course of it with quiet living and a positive attitude. Over and over, I keep finding out how powerless I am on this journey.
If you enjoy “Living in a Body,” please consider supporting my work by becoming a free or paid subscriber.
ME/CFS has broken my heart a thousand times, but it hasn't yet broken my spirit. If I’m honest, I can see that it may actually be growing my spirit. For the first time in my life, I’m appreciating the wildflowers. I’ve lived my whole life here in Ohio and I never noticed the wildflowers. Now I’ve got a whole garden of ‘em back there whispering to me all day long. Somehow, those delicate flowers are helping me move forward on this difficult path. They’re part of a great community that’s helping me see the lessons along the way. I wonder if any of this growing would have happened without the nothing that ME/CFS has forced me to do. Hopefully I’ll find out someday that it was worth it.
Today, I’m grateful to be doin’ some doing. Here I am showing up to the page once again to tell my story. I’m really hoping the beast won't punish me for it later. I think after this I'll have some lunch and take a rest before sharing some quiet time with my friend Marion. Marion and I understand the importance of the work we’re doing when we sit quietly together on the porch. When I get quiet enough, I can tell that the wildflowers agree. For now, I’m gonna keep watching for their beauty and listening for their whisper. I can’t wait to hear what they have to say.
Get full access to Living in a Body at halwalker.substack.com/subscribe
The Wedding
Last Saturday afternoon, my daughter Hallie married her college sweetheart, Andy Donnelly. June 15, 2024 was truly one the most beautiful and memorable days of my life. The wedding was a blue skies, sunshine, smooth-running, reasonably-budgeted, love-filled festival of family and friends all packed together in a perfect 78 degree day on the Hines Hill Campus in the Cuyahoga Valley National Park. Seriously, no bride or groom could have wished for more. Though I spent much of the day face down on a mattress in the hatchback of my Toyota Prius, I’m grateful that I was able to be there at all. I missed a bunch of it, but I made several public appearances at key moments throughout the day. I’d like to share a few of my favorites with you.
The Posse
Cameron was my driver for the day. I’ve known Cameron since he was a kid. He’s grown into a fine young man and he got all cleaned up for the wedding. He looked good with a nice jacket, a haircut and a cool hat. I was glad to have him along as a key member of my posse. Mango was my anything-I-need helper and Annette was my guest and spiritual advisor for the day. Annette’s a Quaker. She knows how to sit quietly and wait for the still small voice to move before speaking. My ME/CFS ridden brain deeply appreciates that quality in a person.
Annette also knows how to have a good time. One of my favorite moments of the day was watching my best friend from childhood walking side by side and laughing with Annette as they headed toward my car. It didn’t surprise me one bit that they were getting along so well. I appreciate how loving and affectionate Georg is. He and I sat together on the back of the car and held each other’s faces close while we expressed our care for one another. I so appreciated our closeness as I felt the bristles of his beard on mine. There was a whole lot of love present on that Saturday afternoon. I had almost no endurance for the day, but I didn’t want it to ever end.
The First Look
My first public appearance was at 3:15 pm for the “First Look.” I wheeled my chair into the stone cottage and waited in the hallway for Hallie to step out in her wedding gown. I didn’t know what to expect from myself, but it didn’t surprise me a bit that as soon as she appeared in the doorway, all the emotions of 26 years of fatherhood welled up in me and I burst out in tears. I was grateful for the release as I sat there in my wheelchair. I was feeling so much. Deeply touched by her beauty, her youth, her effervescence and my love for her, I wept like a grown man. It turns out that was just the first of a full day of similar emotional releases. It was a remarkable day of big feelings.
The Walk
My next honor was to walk Hallie down the aisle. For weeks leading up to the wedding, I wondered whether I would walk or wheel the over 50 feet of land that needed to be covered at the processional . Even though she’d never admit that it mattered, I really didn’t want to disappoint Hallie with a wheelchair ruining the picture perfect moment. On the day before at the rehearsal, I wasn’t humble enough to use the chair. I kept popping up to stand as I shook hands with Andy’s family and the wedding party. Every ounce of my granddad that lives in me said that that’s what a man does. He stands up to shake a hand. When the time came to rehearse the walk, a momentary combination of self-will, fear and people pleasing took over and I walked — all the way down and all the way back. The next morning, as I trembled with weakness in my bed, I knew that I was paying the price for my pride. With ME/CFS, that price is rarely worth it.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
At the last minute before the actual procession, with a clarity of thought breaking through the weakness in my brain, it became clear that rolling down the aisle was the right thing to do. When I told her my plan, Hallie didn’t flinch. I realized once again that when it comes to this illness, my daughter is one of my most compassionate supporters.
We took our time getting down the aisle. I held Hallie’s right hand while my elbow rested on the arm rest of my chair. Being in the chair put me right about at her level. I kept my eyes fixed on my daughter the whole way down. With tears running down her face, she was truly stunning.
The Hug
Hallie’s aunt Johanna and Andy’s aunt Ann were the co-officiates of the wedding. They waited with Andy as Hallie and I approached the arch. The moment after our arrival is a moment that I will never forget. I stood up to give Hallie a big embrace. My arms wrapped all the way around her and I kissed her head. When I turned around to hug Andy, there were tears pouring down his face. Those tears welled up all the same feelings in me. I looked Andy straight into his eyes with great warmth and gratitude and love. As we murmured a few heartfelt words of affection, we embraced.
Then I sat back down in my wheelchair, maneuvered myself over next to Hallie’s mom and settled in for the ceremony.
The Song
I had hoped to sing a song at the wedding. A few weeks ago, I even texted Andy’s dad to see if he’d like to back me up with his acoustic guitar. Having never met me in person, Bill gave a resounding “Yes.” But over the next few weeks, my symptoms got worse. It became clear that it would be absurd for me to get up in front of an audience and try to sing. With one more ME/CFS heartbreak, I let go of the idea.
Fortunately, Hallie and Andy thought to invite Andy’s sister, Ellie to sing the song in my place. I’m SO glad that that’s what happened. With her dad backing her up, Ellie did a wonderful rendition of Kate Wolf’s “Give Yourself to Love.” While she was singing so beautifully, I was glowing with gratitude that it wasn’t me up there struggling through the song. I guess God works in mysterious ways, doesn’t she, though?
The Vows
When Hallie was a freshman at Kent State, she got cast in a two-person play called The Stonewater Rapture. Guess who was the co-star? Yep. Andy. It was soon after the close of that show that Andy and Hallie started dating. That was seven years ago. Since then, they first moved to Atlanta to weather the pandemic and then in June of 2021, they found a great apartment in Brooklyn, NY where they live their full lives today.
During the ceremony, we were treated to more of the story of their love and then we got to listen in on the intimate vows shared between these two best friends. I’m continually struck with how well they get along and how much they like each other. It warms my heart. When Hallie was asked when she knew she wanted to spend the rest of her life with Andy, she responded, “It never crossed my mind that I wouldn’t spend the rest of my life with Andy.”
I’m so happy for these newlyweds. They seem to have found a wonderful match. Jim Bray, the director of The Stonewater Rapture in 2017 was in attendance at the wedding to confirm that he was the first to see the great chemistry between Hallie and Andy.
The Mother of the Bride
It was 28 years ago today that Shannon and I threw a DIY wedding at a lake in Geauga County called Shangri-La. Our marriage didn’t last, but it produced a shining light in the world. After many years of co-parenting at a distance, I’m grateful for my friendship with Shannon and for the kindness expressed between us this week. We were two proud parents in the crowd.
I appreciate Shannon’s role in making Hallie who she is. Every time I open up TikTok to see Hallie’s latest, there I see Shannon. I see her beauty, her intelligence, her wit, her impeccable sense of rhythm and her fire. In my welcome speech, I wrote “In spite of all the challenges, Shannon, I think we did a real good job. Who knows? Maybe someday, you and me’ll get to be grandparents.”
The Welcome
I had the great honor of reading a welcome/father-of-the-bride speech at the beginning of the reception. After nixing my first attempt at writing, (which included a sermonette about Love and a weird, potentially inappropriate joke) I came up with a seven minute speech on gratitude that spoke of the joining of two villages. It began like this:
“It was very early on January 1, 1998 and I was getting home too late from some New Year’s Eve festivities. Shannon hadn't been feeling well that night, but we had two more weeks till the baby was due and I hadn’t yet learned the joy of going to bed early. At 2:00 in the morning, I pet beanie for a few minutes as she clawed my chest and then I fell asleep pretty fast.
I hadn't slept for more than an hour when Shannon woke me up. Within minutes, it became clear that she was going into labor and that we needed to get to the hospital. At 4 am, the contractions were getting closer and closer. Shannon held on for dear life as we raced our little red Honda civic station wagon to Robinson Memorial. A little past 6 am, just after the doctor finally arrived, our child was born. It was a girl and the nurse said, "She looks like a Hallie." Two weeks earlier than expected, Hallie Alvida Walker became Portage County’s New Years baby of 1998 and the whole world got just a little bit brighter.”
I broke down a bit as I spoke the next line. I said,
“Hallie. One of the things that I love most about my life is that I get to be your dad. Thank you for being such a light in my life. Thank you for being such a light in all our lives. I love you and I’m so proud of you... and I can't wait to see what happens next. You probably already know this, but one of the highlights of my day is opening up TikTok to see your latest. I'll always be cheering for you, Hallie. ”
The Father/Daughter Dance
Back in May, the DJ asked Hallie what song she'd like to use for the father-daughter dance. When Hallie and I tried to think of what songs were meaningful to us, we drew a blank. As she was growing up, we didn’t listen to much music in our home. The music in our house was Hallie practicing the piano and singing broadway musicals at the top of her lungs. But after several minutes of pondering, the obvious choice became clear. There was truly no other choice but my song “Underneath the Surface.” Hallie and I began performing this song together on stages when she was just a kid. For years, I’ve treasured a recording of that song that I made when she was five and we found the perfect use for it last Saturday.
We talked briefly about how we should dance the song but we didn’t have a plan. I told her that it would probably be best if I stayed in the chair. But when I wheeled up to the center of the dance floor and met Hallie there in her gown, I stood up and took her in my arms. We began swaying back and forth and lived an eternal moment that brought the whole tent down in tears.
The Drive Home
Cameron and I left the wedding earlier than I had wanted to but I knew my body couldn’t take anymore. While Cameron drove, I took my shoes off, curled up in the back and wept while I read a thank you letter from each Hallie and her new husband, Andy. I’m keeping those letters by my bedside to remind me of the love that I have in my life.
On Father’s Day, the day after the wedding, Hallie, Andy and I spent some time debriefing the whole event. We were all still glowing from the perfection of it all. They asked an intriguing question. “If the wedding had been a movie, who would have been the main character?” It couldn’t have been Hallie or Andy because it was all too perfect for them. Without too much argument, I humbly agreed that it very well could have been me that was the main character. “The Wedding” starring Hal Walker — a true story of love and loss, illness and courage, joy and grief, recovery and regret, success and failure, forgiveness and family and all the other qualities that make for a good tear jerker.
When we hugged at the end of the evening, Andy said, "Happy Fathers Day, Dad." I laughed when he said it but it makes me cry now. What a great guy my new son-in-law is. Thanks for making my daughter so happy, Andy.
Hallie and Andy are in Costa Rica right now having the honeymoon of a lifetime. I’m lying here waiting for the next photo that’ll hopefully be showing up in my messages before too long.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I couldn’t resist the temptation to make episode 88 all about my song, “My State, Ohio - the 88 Counties.” Click PLAY above to hear the podcast version of this episode. Click the links below to hear the song. Enjoy. Hal
My State, Ohio
I've had several significant accomplishments in my life. And one of them was a song that I wrote back in 2003. A song that incorporates the 88 counties of Ohio. It’s called “My State, Ohio.” I couldn’t resist the temptation to make episode 88 all about this song.
I've taught the song to hundreds of fourth graders around the state of Ohio and I always thought it should be taught to every fourth grader in Ohio. It's a fun song to sing. Once you learn it, you never forget it. It's a challenging song to learn though. It's highly syncopated and you really got to spit out all those words. Maybe someday, “My State, Ohio” will be in the Ohio social studies textbooks. Though I doubt it unless I do something about it. It's probably not going to just happen on its own while I lie here in bed.
The story goes like this.
Back in 2003, I was hanging out in downtown Kent on North Water Street with a few friends. And just for fun, we were trying to list as many of the counties in the state of Ohio that we could list. And I, as someone who at the time was traveling all over the state of Ohio, bringing music into the schools, could only list about three. I knew Portage, Summit, and maybe Geauga.
My grandfather was a tax collector in Alabama and he prided himself in knowing every county in Alabama. So I vowed then that I would go home and I would write a song, a song that would incorporate the 88 counties of Ohio… and that's what I did.
I went home and I got out a map of the state of Ohio and a pair of banakulas. Up in the northeast corner of the state, I saw Ashtabula County and I knew that's where the song needed to begin. So I picked up some banakulas until I felt that nice syncopated rhythm and I sang right down the eastern side of the state. I sang, “Ashtabula, Trumbull, Mahoning and Columbia, Jefferson, Belmont, and Monroe.” Amazingly, I made it all the way down to the southeast corner of the state. So I went back up to the top and sang, “Lake, Geauga, Summit, Portage, Stark, Tuscarawas, Carol, Harrison, Guernsey, Noble, and Washington.”
I spent the next two weeks writing this puzzle of a song until it was done. And then I drew up this lyric sheet. It was a map of the counties of Ohio with little arrows showing the way the song led us through the state from the northeast corner, all the way to the southwest corner, the county of Brown.
It just happened that during that summer of 2003 we were celebrating the Ohio bicentennial. I had just started working with Frank Jacobs at the Summit Children's Choir and we came up with an idea to teach all 100 members of the multi age choir to sing the 88 counties. And then we performed it in front of the Governor at EJ Thomas Hall in Akron that summer. It was an amazing night. So here we have it. “My State, Ohio.” The 88 Counties sung by all the voices of the Summer Children's Choir back in 2003. Enjoy. (See the full lyrics below)
There we have it — the 88 counties of Ohio from about 21 years ago.
Well, this episode is going to be a short one today, everybody. I'm sorry to say it's been real tough lately. My symptoms have taken another turn for the worse. You can probably hear it in my voice. I don't have much oomph. It's been brutal. But I appreciate you listening. It's amazing to me. We've made it all the way to Episode 88 and I'm wishing you the best.
Hallie's getting married in two weeks. I’m looking forward to that. I'll send you some photos after the fact. All right, I'm gonna take a little rest now. All the best to you. Oh, if you're interested in learning the 88 counties there's some videos you can watch on YouTube to learn the whole song. I'll put that right down here below. Okay, bye bye.
My State, Ohio
Ashtabula, Trumbull, Mahoning and Columbiana, Jefferson, Belmont and Monroe. Lake, Geauga, Summit, Portage, Stark, Tuscarawas, Carroll, Harrison, Guernsey, Noble and Washington.
These are the Counties of my state, Ohio, I offer them to you to sing along. The names that I’m sounding there’s eighty eight that I know and they all come together to form a song. Won’t you sing a-long!
Cuyahoga, Lorain, Medina, Wayne, Ashland, Holmes and Knox, CoshoctonMuskingum, Morgan, Athens and Meigs.
Erie and Huron, Richland, Morrow, Licking, Fairfield, Perry, Hocking, Vinton, Jackson and Galia
Lucas, Ottawa, Sandusky, Seneca,Wyandot, Crawford, Marion, Union and Delaware
Franklin, Madison, Pickaway, Ross, Pike, Scioto and Lawrence,Fulton, Williams and Henry, Wood, Defiance, Putnam, Paulding, Van Wert.
Hancock, Allen, Hardin, Logan, Champagne, Clark,Mercer, Auglaize and Shelby, Darke.
Oh, Miami, Preble, Montgomery, Greene, Clinton, Fayette, Highland, Adams, Butler, Warren and then there’s Hamilton, Claremont and Brown.
Two hundred years old. My state, Ohio.
Learn the song by clicking below…
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome. Press PLAY above and please share this with a friend. ❤️ Hal
The Front Row
For about 10 years before the pandemic, I was the host of a live music venue in Kent called the Cuyahoga River Concert Series. It was in the summer of 2011 that I got a call from a Michigan folk singer who’d recently moved into town. As the story goes, Matt Watroba had heard from several trustworthy sources that he needed to get in touch with a potential kindred spirit named Hal Walker. Matt and I met for the first time on my back porch to drink tea and swap songs. With guitars in hand, we discovered that between the two of us, we held the potential for a concert series made in heaven. I had a key for the sanctuary of the UU Church of Kent, a room with the finest acoustics of any room in Ohio and Matt had connections with top quality touring folk acts from all around the country. Together, we conjured up a big idea to bring concerts and community singing to that old space built in 1868 on the bedrock of the Cuyahoga River.
The series got off to a good start. With the combination of affordable tickets, my new found agility with Adobe InDesign and a relatively new promotional tool called Facebook, we pulled in good crowds from the beginning. Matt's wife Kim baked guitar shaped cookies to serve at intermission and Matt and I shared the role of emcee with ease and joy. Time after time, artists would show up for their sound check not knowing what to expect and by the end of the evening, they'd be raving. "Wow! What a great venue." Matt and I were proud hosts. We always started the Fall season with a Matt and Hal concert of our own.
When Matt and his wife made the decision to relocate back to Michigan, my friend Kim stepped in with great diligence and made it possible to keep the series going. Kim and I made a good team making those concerts happen. I look back to those Friday nights at the church with great nostalgia. The Cuyahoga River Concert Series was a warm, intimate, affordable venue that lasted until November 2019 when we hosted our last concert. The corona virus put a long pause on the series and my battle with ME/CFS closed it for good. Occasionally, I still receive requests from musicians around the country who’d like to play, but sadly, I have to inform them that the Cuyahoga River Concert Series no longer exists.
Back in 2016, we hosted an award winning band from the East Coast called Ayreheart. Led by Grammy nominated lutenist, Ronn McFarlane, the band had a reputation for dispelling all previous conceptions of the lute’s limitations. This concert promised to be an exciting and powerful night of original music. As usual, I greeted the band at the back door of the church and helped with the load in. Ayreheart then set up their own gear and did a sound check without my assistance. I took the opportunity to go live on Facebook in hopes of rounding up a few last minute patrons to come out for these well travelled musicians.
I opened the show with a musical welcome and a brief introduction of the band. Then I retreated to my usual spot in the rear of the sanctuary. It was there in the back that I had the freedom to kick up my legs or even lie down on the pew to ease the perpetual symptoms of chronic fatigue syndrome. For the first half of the show, I sat alone in the back row -- just me, my smart phone and the critical conversations that have a tendency to go on in my head. “Hm, the drums are too loud and the vocals sound kinda weird… They should have put the vocals through our sound system... In fact, this vocalist is kind of getting on my nerves. You know what, these guys really aren’t all that good after all. Maybe I’ll go check my Facebook…”
As the world class, grammy nominated musicians continued, I found reason to disengage. I reached into my pocket for that electronic block of plastic and glass and I began the all too familiar ritual of flipping through apps in search of some kind of relief. Maybe a mind numbing word game or some stimulating content from the cloud would soothe my existential angst. Hungrily, I searched for something more entertaining than the top notch musicians that were playing real live musical instruments right in front of me.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
At the intermission, my friend David Badagnani came up to me and said, “Wow, these guys are incredible, aren’t they!” I nodded and agreed. I didn't have the courage to confess that I’d been paying closer attention to my Facebook feed than to the lute, the drums and the bass. I wasn’t ready for that humbling of a confession. After a quick cup of tea in the social hall, it was time to flash the lights again and get everyone seated for the 2nd half of the show.
Just so you know, David Badagnani has a deep passion for music. He’s an ethnomusicologist, a world music connoisseur and he's willing to travel long distances to seek out unique musical combinations. In the realm of music appreciation, David Badagnani has what I want -- curiosity, a long attention span and a good listening ear.
As the music started up once again, I noticed David sitting in the front row with an empty seat right next to him. It suddenly became clear to me. From that hidden place inside, I heard the still, small voice loud and clear. It said, “Hal, put your phone back in your pocket and move to the front row. Go now... before it’s too late.” Without any delay, I stood up and walked directly to the front and center where I claimed the best seat in the house. Within moments, I watched my experience transform completely.
Suddenly, I was in the presence of great musicians doing amazing things. I was inches away from a passionate drummer with sweat pouring off his brow. His every limb was dancing with the rhythmic sub-divisions of every beat. His eyes were transfixed on the bass player who was tall, relaxed and easy on the eyes. The connection between these two rhythm makers was vibrant and a pleasure to watch. Together, they provided the foundation for a multi-layered musical experience.
Before the show, the drummer had confided in me that two weeks earlier he’d had a heart attack. He shared with me that the exertion of performing a concert was a lot for his body to handle. As a performer who's been living with ME/CFS for many years, I knew just what he was talking about. As I sat in the front row, I was immersed in his humble and powerful energy. As the feeling of compassion for this guy came over me, I felt a sincere hope that he would find a way to continue providing his musical gift to the world for a long time to come.
Sitting over to the left, lutenist Ronn MacFarlane maintained a quiet and masterful presence. His left hand flew over the frets of that ancient instrument with incredible ease. Within minutes of sitting down next to David, it became clear to me that this evening of music was something very special. Face to face with the humanity of these musicians, my thoughts became friendly, even toward the lead vocalist who'd been getting on my nerves for the first half of the show. In the front row, I was free from the distractions that separated me from the experience. The music brought me to the edge of my seat and I became a participant in the concert. The negative conversations in my head faded off into the distance.
From a delighted place of attention, at the next applause break, I turned to David Badagnani with wide eyes, a big smile and an enthusiastic nod. I let out a chuckle of disbelief to confirm my amazement. “Are you seeing this!?” There in the front row, with an old friend by my side, I experienced connection. I’m pretty certain that that’s what I was craving the whole time.
Still today, I notice areas of my life where I’m hiding in the back, crawling into my safe little zone of protection. With a lifelong proclivity toward preoccupation, who knows what kind of beauty I’ve been missing out on. I’m certain these critical conversations that go on in my head are separating me from the people in my life. I can only imagine the extent of connection that might be possible with my full attention. And I’m well aware of the ways that I numb myself to avoid the discomforts of this human experience. I wonder what would happen if I just felt it all. Would I crumble? Possibly so. Or I might just start blooming. Maybe the whole world would open up like a music box.
For real, I wonder what it would be like to move fully into the front row of my life. I have a pretty good feeling that it wouldn’t be easy. I imagine there’ll be some real growing pains along the way. But if it's anything like that Friday night with Ayreheart in 2016, I don’t want to miss out. I'm ready to take the best seat in the house. Won’t you come join me? C'mon. Let’s do it. Let's head up there together. We can sit next to each other and do high fives at the applause. We can stay all the way to end of the show.
Thank you for being here. I appreciate you. Go easy. Easy does it. Take care of that body of yours and enjoy living in it while you got it. It won’t be here forever. Alright… I’m sending all my best. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome. Press the PLAY button above or read the full transcription below. Enjoy. ❤️ H
Best Day Ever
I've got a friend named Annette who's got a pretty awesome and amazing attitude about life. Just to give you a little taste of the kind of person Annette is… she went on a trip recently. She sent me a letter and part of the letter says, “to me, all the travels in the world could bring me no more joy than a hug or handshake, or a quiet time sitting on the porch with a dear friend.”
In my eyes, that's a wonderful way to look at the world. Annette doesn't need a whole lot. She doesn't need all the travels in the world. Sitting on the porch with a dear friend is enough. Annette visits me a couple times a week and we sit and have some quiet time together and then we ponder the big questions of life. And often it's the case that her great attitude about life rubs off on me. It happened today. That's why I'm here now, after one of the hardest days of my life, creating an episode called “Best Day Ever.” Thanks, Annette. No, really, thank you.
She told me a little story. I was only 90% listening, so I can't remember all the details, but it went something like this. There was a dad and there's a child who's like five or six years old and the child gets a terminal diagnosis, maybe six months to live with cancer of some kind. And I don't remember how it goes, but the dad says we're gonna make this the best day ever. I missed a part of the story. But basically the dad who's about to lose his child is gonna let go of his grief. He's gonna put all that aside and he's gonna make this the best day ever. And Annette said, “we could all learn from that. Put aside all our grumbling and make this the best day ever.” What if today were the best day ever?
It reminds me of a piece I've been wanting to write for a while called “The Happiest Guy in Ohio.” The essence of that story is basically all it requires to be the happiest guy in Ohio is a shift in my attitude, a shift of my thinking. Here I am living with severe chronic illness, waking up wanting to die, but I'm the happiest guy in Ohio. It's gonna take tremendous discipline and lots of practice… and usually I don't think I'm cut out for it. Usually in my own mind, I'm more cut out for the prize of the guy with the most difficult life in Ohio or the most grieving guy in Ohio. But it makes me smile, just thinking about the possibility of being the happiest guy in Ohio, all with just a switch of my thinking.
Today's been a really hard day. I woke up moaning with discomfort…loud audible moans, moans of suffering, moans of illness, moans of loneliness, moans of “how am I going to face this day.” My symptoms today have been scary and severe and I have no idea how long they're gonna last or if they're ever gonna go away — deep weakness in my core, a sick feeling all over my body, a cold kind of clammy feeling on my skin, weakness in my legs and my arms, aching weakness in my belly and a loud, overbearing whistling in my ears and I'm scared. I'm scared that this is my new normal once again.
I had a few better days last week. My daughter was here to visit with her fiancé Andy and I had a few better days. By the way, I hesitate to even call them “better” days for fear of what you might think a “better” day is. My bar of better days has gotten pretty low compared to a year ago. But I was having a few better days and I got to spend some time with my beloved daughter Hallie.
We played “Risk.” Andy, Hallie and I played Risk and it was fun. I love that game. I hadn't played since like 1980. It’s a cool game of world conquering. I was winning and then they teamed up on me and brought me down. We actually didn't finish the game. Risk is a many, many hours long game and we didn't finish.
And then Hallie left and I crashed. The last three days have been kind of hellish. It's so incredibly difficult living in this body. It's such a brutal illness. It has no mercy. Every night when I write down my food for the next day, I write a few words about how my day was today. And for weeks, at the first part of this year, over and over again, I was writing “hardest day ever,” “worst day ever.” I was experiencing decline after decline. And I was writing it down every night, “worst day ever,” “hardest day ever.” It kept getting harder.
I know that gratitude and peace and happiness and contentment and acceptance are just a thought away. But I've got this crunched up, tightened up, exhausted brain that’s so stuck on grief and fear and illness and loss. Focusing on the illness comes so much more naturally than looking for the good and focusing on all that I have. It's gonna take a lot of letting go to make this the best day ever, to see it that way.
Annette, how could this possibly be the best day ever with this rain, this damp air, this ringing in my ears, this pain in my gut? How could this be the best day ever? But I sat quietly with a friend on the porch today and we connected in an imperfect way and maybe that’s enough.
And before Annette came over, my friend Christie came over and sat by my bedside and held my hand and gave me a beautiful gift. She created this tribute book to honor my 25 years of work at the Unitarian Universalist Church of Kent, complete with photographs and a beautiful tribute that she wrote. I laid in the bed on my belly with labored breathing and I cried a couple of times and she held me and we talked about the good old times at the church. We had some good days back then. Man, I miss it.
I gotta admit, it's really hard for me to call this the “best day ever.” It's been brutal. It's been bru-fn’-tal. I asked Annette, I said, “Annette, how do you make this the best day ever? How do I change my attitude?” And she said, “You appreciate the garden, appreciate the rhododendrons, appreciate the rain, how happy the garden is receiving the rain today, appreciate this moment sitting here with a friend.”
I realize that the “best day ever” is kind of a hyperbole. I'm not looking for the best day ever. I'm looking for some peace, some contentment. Really, I'm just looking for some relief from this physical discomfort. It's so taxing. It's so exhausting.
That was another thing Annette said on the porch. She acknowledged the fact that I’m grieving. I'm grieving the loss of my old life. I've been doing a lot of grieving for a while now. And she said “at some point, you've got to start practicing embracing your life now. And maybe you can do both of those things at the same time — grieve the things that you've lost and embrace your life now at the same time.” It's so hard to embrace this life of discomfort, of suffering — physical discomfort. But no matter how badly I want it to go away, this is what I get. This is my reality. I've said it many times before. I'm just so impressed with how satisfied Annette is with the small things.
I always liked the big things, the big exciting things — being on a stage, getting lots of attention, having intense romantic love relationships, creating amazing projects and doing amazing things, landscaping the entire backyard over the course of a summer, getting everything done on my to do list, traveling to Kauai, traveling to Thailand. I'm less familiar with the satisfaction of sitting quietly with a friend on the porch like I got to do today.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
But I'm grateful. I'm grateful ME/CFS had been the best thing that ever happened to me (lol) and this has been the best day ever. I got to sit on the porch with a friend.
Oh, I'm turning my vegetable garden into a wildflower garden and I planted a bunch of sunflowers and Ohio wildflowers and some brussels sprouts. Brussels sprouts have never done well in my garden, but I'm determined to make it happen. I love brussels sprouts. I loooove brussels sprouts. Thank you God for the brussels sprouts.
Anyway, I think that may be all I got for you today. Best day ever. I hope you'll go and have the best day ever. Or if not the best day ever maybe just a good enough day. Maybe that's what today's been. It's been a good enough day. I’ll write my gratitude list of 10 things tonight. I didn't hurt anyone today. I didn't act out today in any of my addictions. I'm truly blessed. I'm blessed with support and love.
My daughter's getting married next month. I'm hopefully gonna be at the wedding, giving the welcome and the blessing before the meal. Hopefully walking her down the aisle in some fashion. It's gonna be a beautiful day. It's gonna be a beautiful day. She's found a beautiful man to spend her life with. I'm so happy.
And I appreciate you listening today. I'm really glad to connect with you. Tell me what's getting in the way of you having the best day ever today. You can share it in the comments. Anyway, I'm gonna leave you with a little bit of rain that was recorded in my backyard. It was a rainy day in Ohio today.
Hey, enjoy living in that body of yours today. If you can go on a walk for me. Go on a bike ride. Go on a run and love every single minute of it. Seriously, come on. Come on! Love every single minute of it — of that walk, of that bike ride. All right, I care about you. I appreciate you. And I'll see you next time. Bye bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Press the PLAY button above or read the full transcription below. Enjoy. ❤️ H
Slow Down
Hi. I'm Hal. This is the “Living in a Body” podcast. Welcome. I'm glad you're here. Today is episode 85. Can you believe it? You better go back and listen to the first 84 of ‘em before you listen to this one. (lol) Anyway, 85. It's called “Slow Down.” And it goes something like this…
You didn't ask for my advice. But I'm gonna give it to you anyway.
You can thank me later.
Slow down. Slow the heck down. Join me in finding areas in our lives where we can turn the speed down a couple notches. Slow down, sister. Slow down, my brother. What's the big hurry? Slow your walking down. Slow your talking down. Slow your breathing down. Slow your eating down. Slow down as you're going up and down the stairs. There’s no hurry. Slow down your love making. Slow your thinking down. Slow your heartbeat down. Slow down. What's all the urgency? What's the big rush? It's gonna be okay.
I have a feeling that someone here that’s listening to this goes too fast. And it might be me. Yep, I tend to go too fast. I think too fast. I breathe too fast. And I tend to do too much. And the thing I'm learning… the main thing I'm learning living with a severe version of ME/CFS is to slow down.
I’ve become convinced that the key to being satisfied, the key to being content and happy and at peace, the key to being present, the key to being in relationship and the key to surviving in this crazy sped up world is to slow down. As a species, on a cellular level, we gotta slow the heck down. Put the phone down. Put all the devices away. Slow down. And be. Be with yourself. Be with nature. Be with your family. Be with your friends and thank me later.
Slow down, you’re movin’ too fast.You got to make the morning last, you’re justKickin’ down the cobblestonesLookin’ for fun and feeling groovy.
But it's not gonna be easy. I make it sound like you just push a button and it's the slow down button. I warn you it's probably gonna be hard. It might be painful. Depending on how fast you’re going, it may take a while. Every part of yourself is gonna resist. Cause we live in a sped up world and if you’re anything like me, that world’s rubbed off on you. You’ve probably been runnin’ at this speed for a long time and you may not see any reason for slowing down. Well, this illness has taught me something that I never would have learned without getting sick. Slowing down is a good thing. Look at the trees, look at the snails. Look how happy they are.
Now, I'm not an expert in this area. But it’s my main practice these days. Today, I was moving around the kitchen preparing some food and I was zipping from the fridge to the table to the sink on my wheelchair. Zip zip zip… I kept running into the stove and running into the cupboards. I’m living in a body with a nervous system that's constantly on edge, constantly on fire. When I’m downstairs, I feel some urgency to get back to my safe place which is belly down in the bed, so everything's got to go fast. And then I pulled up my wheelchair to the back door and I opened the sliding glass door and I looked out at the earth and she was movin’ real slow and I remembered. Slow down. Slow down, Hal. Look at the trees move. Feel the breeze on your face. Look at the sky, how it moves. Even better than slow down, just stop. Stop. Just stop for a few minutes. And listen. And watch.
Many years ago, I went on a vision quest. My friends, Michael and Judy of “Shared Vision” took a group of us down to southern Ohio to the woods and did this vision quest. It was four days and four nights in a 10 foot circle by myself in the woods with nothing but four gallons of water and a tarp. No food. Just a tarp. Just four gallons of water. It was a beautiful ceremony. The night before we had a sweat lodge. We did prayers. And we had protectors. Protectors that would check in on us. Every morning I would walk down to the trail and I would stack a little rock letting my protectors know that I was okay. I had survived the night. And I sat in that 10 foot circle. And the main thing I remember was how slow the Earth moves. How slow the sun moves across the sky. There were no clocks, no cell phone, no devices, just me and the earth. And the Earth moves painfully slow.
After four long days and nights, we came back down to the main camp. They welcomed us with broth and miso soup and really easy foods to break the fast. And as we were leaving, there was this huge circle of like 20 or 30 turkey vultures that came and started circling the camp. It was very meaningful. And I somehow remember then a downpour… a very cleansing downpour. When I got home from the vision quest, I wrote this song called “The Beauty Before Me.”
May I be complete within my open circle.May I be willing to see some hope in a broken world.May I be like this tree standing in the center of my circle.I am solid on the ground and I know I’m not alone.
May the beauty before me open my eyes to see…
On the drive home from the vision quest, the main thing I remember was a stop at a rest area along the way. I had this very clean feeling in my mind and in my body. Four days of nothing but water and I was clean and pure. But at the rest area, I couldn’t resist one of those cookies that the volunteers were giving away. So I ate a cookie. And right away my head clogged up. My nose and my ears and my head — everything clogged up. And I lost that slow peace, that slow, clear peace. And the cookie set off the speed of the world. Yeah, that sugar. It’s a powerful drug. Sugar is a big part of this society. I know it adds to the speed.
I haven't eaten any sugar in almost 10 years. Well, that's not true. Let's say two years because I sort of played around with some protein shakes that had sugar in it a couple years ago. “Kachava.” After not eating sugar for six years, I was introduced to chocolate Kachava in my illness and it was heavenly. But for the last two years, I've had no sugar and for many years now I’ve consumed no caffeine and it’s definitely helped with the slowing down. I haven't looked at porn for about 10 years. That helps with the slowing down. I'm off social media. It's been several months now and that helps with the slowing down. Although I do go on Tik Tok every day to watch my daughter, Hallie Walker. (@ hallielooyaa) She's doing some amazing work on Tik Tok.
Anyway, the point I'm trying to make is that in that vision quest, we got slow. And I was face to face with the slowness of the way the sun moves across the sky. And it was painful. And that's got to be a symbol! It's got to be a sign! That's got to be our teacher!
I’ve been noticing that it's lawn mower season now. Whereas up ‘till now, my room has been very quiet, but now every day I'm hearing the lawn mowers and the chain saws. These are all fast moving things, things that get the job done fast. Whatever happened to the cross cut saw? Wouldn't you love to hear your neighbor doing some cross cut sawing? Wouldn’t you love to watch your neighbor out there with one of those old fashioned rotary lawn mowers and a rake? Yeah, I'm advocating the slow life to save the world.
And I need to learn it myself, ‘cause I tend to move fast. You know, give me something to think about and my brain starts thinking… fast. Even the way I approach this podcast. When I get an idea, it’s hard for me to take a break ‘till I get it just right. I’ve learned that it’s right action that leads to right thinking, so I think I’ll take a nice little break right now till after lunch — slow my brain down. I’ll see you on the other side.
Slow down.
I’m back. I did it. I took a break.
So the key to my survival lately has been to slow down. Feel the feelings. That's the thing. When I slow down, then I have to feel the feelings. And somehow by feeling those feelings, getting through to the other side of the feelings, I find out what it is to be human. As opposed to constantly running, constantly spinning ten plates in the air. You know, running from my house over to the church at the last minute having all the papers printed out for the folk orchestra then running back and forth between the printer and the folk orchestra and making last minute changes and it had to be perfect and then Sunday morning showing up, last minute changes pulling it off. Some people did not like that side of me. I created beautiful tornadoes wherever I went. But lately, I’ve been forced to learn to pause. I'm learning to wait. Slow down, Hal. Smile and slow down. Breathe more slowly. Talk more slowly. Go on my wheelchair more slowly, so I'm not constantly running into the doorway. (lol) I've had several pretty major wrecks in this wheelchair just on the second floor of my house because I'm zipping around too fast.
I hope this helps. Tell me what your experience is. Do it for one day. Do it for one hour. Slow down radically. Ride a bike instead of driving. Walk instead of riding a bike. Make a phone call rather than sending a text. Even better, write a letter rather than sending an email. Yeah, walk instead of riding a bike. And if you go on that walk say, “Thank you God that I can walk.” Because the thing I want to do more than anything is go on a walk. I want to spend my life walking. That's all I want to do. I want to be one of those people that you see every day walking. And then meeting people along the way and saying, “Hey, I know you. I ran into you yesterday when I was walking.” And if you go on that walk, stop by my house. Knock on the door, walk right in and come right upstairs. You're all welcome. Come right in and stay for ten minutes of quiet time. Stay for ten minutes of slowing down and thank me later.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
All right. Maybe I've said too much. I love you. I care about you. That's why I'm giving you this advice. Even though you didn't ask for it. I care that you're moving too fast. I care about your health. I care about the Earth. That's why I'm telling you this. Okay. I think that's it. That was what I wanted to tell you. Slow down.
Let me read this page from the 24 hours a day book. Just one sec… The goal of slowing down is calm. We want calm. We want serenity and peace and contentment so we can be available for others. What I'm venturing to say here is the slow life brings quiet and brings peace to the whole world. Here's the 24 hours a day book from April 15 — meditation for the day.
I must keep calm and unmoved in the vicissitudes of life. (Look up that word vicissitudes.) I must go back into the silence of communion with my higher power to recover this calm when it's lost even for one moment. I'll accomplish more by this calmness than by all the activities of a long day. At all cost, I will keep calm. I can solve nothing when I'm agitated. I should keep away from things that are upsetting emotionally. I should run on an even keel and not get tipped over by emotional upsets. I should seek for things that are calm and good and true. And stick to those things.
And what I find is slowing down promotes calmness. And in this wildly overactive nervous system of mine, living with ME/CFS, what I'm seeking more than anything else is calm.
All right, I care about you. Slow down. Help me slow down too. We can slow down together and change the whole world. Imagine that — a slow moving society. Imagine how much love there could be in the world if we all moved a little slower. Alright, let’s keep the dream alive, you and me, one slow step at a time. Okay, I’m signing off. bye bye. ❤️
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m a day late, but here I am. This is the “Living in a Body” Podcast. Press the PLAY button above or read the full transcription below. Enjoy. ❤️ H
No Escape
Hi, I'm Hal. This is the “Living in a Body” Podcast. I'm feeling pretty weak, pretty out of breath. But I'm wanting to make this Episode. It’s Episode 84. I don't even know what I'm going to say, but I'm gonna call it “No Escape… So what are you gonna do with it?” Here we go… episode 84. No escape. It goes like this.
Occasionally, I ask myself this intriguing question. Would I rather live with ME/CFS or be a prisoner in a prison cell with a healthy body? It's an interesting question because they're both forms of prison. There's no escape. There's no escape from this illness. If I had a healthy body in prison, I could work out. I could write a book. I could interact with many different people. I could build community. I could practice meditation, probably become a really good watercolor artist. Similar to prison. with ME/CFS, there's no escape. I could possibly do some of those things I mentioned, but I’m sick all the time. My limitations are very severe. There's no escape from this illness.
There are many times like this morning when I was feeling like I was in hell. And there was no end in sight to the hell. And I just wanted an escape. Give me an escape, I'll take anything. But there is no escape. (Full disclosure, I took a half milligram of Ativan and it's not doing like it used to do because my symptoms have been worse lately, but it cut the edge a little bit and I'm not in as much hell.)
Okay, that's the end of the episode. (lol) That's all I got for you.
Someone turned me on to this book by Pema Chodron called “The Wisdom of No Escape.” And I read the first chapter. And it was inspiring….this idea that when we have no escape, we get to find out who we are. Using curiosity, we explore the fear, explore the grief, explore the discomfort, explore the sadness, explore the joy. And it all happens in this moment, in this body. This is what we have to work with. This is our canvas. This is where we do the exploring with exactly what we have now. We don’t run from the discomfort. We go into it and let it grow us.
And that inspires me, like wow, I have the opportunity to do the hardest to do the hard work. We do hard things. That's one of the mottos in my 12 STEP program is “we do hard things.” In recovery, we learn to be adults. We learn to face life on life's terms and do hard things. And the spiritual work of finding out who I am, under very difficult circumstances is the hard work that I have to do.
But I don't want to do hard things. I want an easy life. I just want to have fun like everybody else. I just want to go out for dinner and play ping pong and go contra dancing and make love and play frisbee and go to cool music festivals. But a friend reminds me that not everyone is just having fun. They've got their own problems. If we piled up everyone's troubles in a big pile, they say that most of us would choose our own troubles back. I get to be Hal Walker with all my troubles. It's not easy living in this body with no escape.
And I'm just a folk singer from Ohio. Lots of times I don't feel like I'm cut out for this kind of work. Sometimes my mind gets so crowded with fear and dread and grief and despair and hopelessness and it's hard to see the light through all that. It's hard to listen for the still small voice hidden beneath all those feelings and all that clutter of negativity and all these crazy uncomfortable physical sensations.
As I was approaching this podcast, I was thinking, “How can I be of service? What can I offer that might help?” I'm not sure what that is. I'm not sure what kind of help you need, but I guess I'd like to provide hope. I wish I had smarter thoughts. I wish I had wiser thoughts. I was thinking, why don't I get to be a Pema Chodron? Sometimes I'm writing in my “freewrite,” and I write hundreds and hundreds of words. And most of them are just frivolous gibberish. There's not a whole lot of wise phrases that you would cut out and post on a spiritual billboard. (lol) Why don't I get to be one of those guys. That's all my ego, I just want to… if all else fails, maybe the one thing that this illness can do for me, is make me wiser so that so that people would want to quote me on spiritual billboards. (lol) That's funny.
But really the practice is to be one among many, one special shining light among many shining lights. One Bozo on the bus, just another Bozo on the bus. One among the millions missing of ME/CFS.
I feel missing today. The “Who’s Your Mama” festival is happening downtown. And I was always down there. You know, I never felt particularly comfortable there. I was always…. you know, it's been hard for me to connect with people my whole life. I go into a crowd and I’m nice and I'm friendly and I say the right things. But I have a long history of just lacking that feeling of connection. So all my songs that I ever wrote are about connection, about community. I love this one song, It goes…
I've been writing community with every song I promise, but the words are nothing but poetry till the work of love begins. It's the beauty I’m seeking in you and me. That'll carry me through these questions. And to move together in unity is the action that I choose.
What's the point of us doing this? What's the point of us holding hands? How do we trust the truth of this? How do we make the circle dance? How are we held accountable? How do we hold the mystery? How do we join together and stay free?
I'm on a small boat riding wild oceans. Oh, how can I just go and roll with the motion? Oh, we're on a wide ship, riding in open seas. It's been such a long trip, it’s taken its toll on me.
That's it. That's a great song. I've been writing community with every song I promise. But the words are nothing but poetry until the work of love begins. It's time to begin the work of love. And here I am living in a big house by myself. Forgotten.
I was complaining to a friend saying, “why don’t people check up on me? Why don't people visit and check up on me.” There are several people that do, but then I said, “but I don't check up on them. I don't check up on them.” Hal, you don't check up on them. In order to have friends, you have to be a friend. That's my service for today. That's my wise words. It's sort of a cliche. I'm not sure that I'm making this up in this moment. In order to have a friend, you have to be a friend. And I'm getting better at that. I'm getting better at sending cards, making phone calls and saying, “how are you doing?” A friend sent to me this prayer of Saint Francis. Let me get it. Let me grab it. (Phone Rings) Hold on I’m getting a call.
That was a call from my new sponsee Peter, who has been the highlight of my week. We've been working together for about three days now. And we spent about three days getting to know each other before that, and he eventually asked if I would be his sponsor. And it has just been a wonderful three days of being of service, helping. You know, I have something to offer, which is a program of recovery. And I have lots of experience in it and he's a delightful guy and we talk every day on the phone and we talk sometimes several times a day on the phone. And when I'm helping this guy, I'm not thinking about my own problems. So it's beautiful the way the 12-step program works that way. You know, in order to keep it, we got to give it away and I'm giving it away to Peter one day at a time. And I'm so grateful. That was him just then, just wanting to share a funny little story.
So anyway, I’ve got this other friend, Andrew who sent me this text. And the short version is “Let me seek to love, to comfort and to understand,” (Rather than to be loved, be comforted and be understood.) In my illness, I have been craving comfort. Like… please, someone comfort me. Where is the comfort? Please, understand how hard this is. Somebody understand how hard this is. Somebody love me.
And no matter how many friends I have, no matter how many phone calls I make, no matter how many likes I get on my Substack post, no matter how many people hold my hand while I cry, it doesn't take away this illness. Every night, I’ve still got to face my mortality on my own. It certainly makes me feel like I'm not alone. But it doesn't fill up what we refer to as the “god sized hole” in me. People keep saying it's God's love that can comfort. Only God can comfort me in the way that I'm seeking to be comforted. And I don't know what they're talking about. But I'm open to it. Because where else am I gonna get comfort? Maybe I could try medical Marijuana again. It didn’t work the first time though.
Generations of people and a lot of the people that I'm in contact with are having that experience of God's love in their life, the love of a higher power. It's our own understanding of a higher power. And I get glimpses. I get glimpses of what they’re talking about, that power. And it's mainly when I quiet my thinking, when I get quiet. My mind is so full of what I want. Like, I want an easier life. I want to go to the Who’s Your Mama festival. I want a life partner. I want somebody to comfort me. I want to go shopping. I want to play ping pong. I want to do all the things I used to do.
But that's not what I have. This is the body that I have. This is the situation that I have. This is the life that I've been given. “There is no escape, Hal. What are you going to do with this?” We do hard things. This is a hard life but we do hard things. What's the next right action? It's easier to say right now because I'm cutting the edge a little bit with the Ativan. This morning was so hellish.
Three days ago, I basically experienced a dip, a worsening of symptoms. It wasn't a crash like I had been having. I've had about five weeks free of crashes and some stability. But three days ago, it took a turn. I felt this weakness in my gut that sort of emanates to a weakness in my arms and a weakness in my legs and a weakness in my brain. And I have just felt like an emaciated muscle-less, limp rag with zero or negative energy. I keep hoping that it's gonna get better and I wake up every morning not knowing what body I'm going to wake up into.
It occurs to me that some people choose a life of severe limitation in order to explore the inner life, in order to find out who they are and how the world works. I sure didn’t choose this but sometimes if I imagine that I did choose it, it helps me a little bit. There’s so much to learn here.
Anyway, I hope you can glean… (I've used that word twice in three weeks.) Hope you can glean some wisdom out of all I've said. Maybe you can use some of it for yourself. But you know, here's my wisdom. Reach out to someone and check on how they're doing. That's what I'm gonna do. I'm going to make several phone calls this afternoon and say, “How are you doing? …How are you doing? No really?” Don't say “how are you!?” Don’t say, “Hey, Jimmy, how are you!?” Say, “Hey Jimmy, it’s Hal. I was just thinking about you. Yeah, I'd love to hear how you are.” I don't know anyone named Jimmy. But no, you say it however you want to say it. I'm not gonna tell you how to say it. But just reach out to someone and find out how they are. And maybe even write them a card. But better yet a phone call. And maybe they'll ask you how you are and you can share your burdens.
I think that may be it for today. I'm glad I turned on the microphone. Turns out I had more to say than I thought I did. It's called “No Escape. What are we going to do with it?” I love you… and I don’t even know you. And I'm also resentful of you (lol) for not having checked in on me and not leaving a comment and not signing up for “Quiet Time with Hal” and not sharing this podcast. I'm just kidding.
Sunday afternoons at 4:00 EST on Zoom. All are welcome to share 20 minutes of “Quiet Time with Hal.” Join here: Zoom Invite Link
After I'm done with an episode, when it goes up, I'm done. It's all God. Now God you do the work. Whoever it reaches, whoever it touches, that's enough. My job is done. Enjoy living in that body of yours today. It’s a beautiful, beautiful world we live in. Even this room I live in is a beautiful room with this “Healing is Possible” painting. There's a photo of my wild daughter at the age of six, doing this beautiful pose. I've got these watercolor supplies nearby. I've got several cool devices nearby. I'm well blessed in the devices department.
Anyway, I’ve said enough. Have a good day. Bye
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” Please press the PLAY button above to listen to the recommended podcast version of this publication. Enjoy. H
BTW… “Quiet Time with Hal” is ongoing…
Sunday afternoons at 4:00 EST on Zoom. All are welcome to share 20 minutes of quiet. Join here: Zoom Invite Link
In-person (Kent, Ohio)— Schedule one on one
Body Sounds
In every publication with the title “Living in a Body,” there comes a day when you got to have an episode that talks about body sounds. Well, this is that episode.
As you know, I live with M.E., myalgic encephalomyelitis. In the last several months, it's become quite a bit more severe. It's a multi-systemic illness. For years, I prided myself in having a rock solid digestive system. I could eat pretty much anything and it always did fine. But that's not the case anymore. Within the last few years, with all these crashes, my digestive system has gone out of whack. And whenever I eat or drink anything, it turns into chaos in my stomach. My stomach fills with gas and chaos starts happening in the form of burps, rumbling, tumbling and boiling and squeaking — all kinds of sounds coming out of my stomach.
You know, when I'm by myself, it's okay. I'm kind of getting used to it. But the other day, I was at the Quaker Meeting for Worship, which is a silent meeting. My friend Annette picked me up and I was really grateful to be out of the house and among friends. And there were about 12 or so people sitting in a circle at the Quaker meeting and the silence began. And the idea of a Quaker Meeting is that we sit in silence and we listen for the still, small voice within. And when the spirit moves, if the spirit moves you to speak, then you speak and minister to the whole congregation. So there are no ministers, every person in attendance is listening for that still, small voice and can speak it out when they're so moved. Well, for the first half of the meeting, I was in an utter, self conscious struggle, because my stomach was making so much noise. Here I am in this silent room, sitting in a wheelchair. And my stomach was just going crazy.
It was awful. And I was so … I was so self-conscious of it. I was so embarrassed. I was thinking about the guy sitting next to me and the woman sitting next to me and they must be like, “Who is this guy in a wheelchair whose stomach is making so much noise?” It was making a significant amount of noise. Unless they were hard of hearing. I think everyone in the circle could hear my stomach. I was thinking at what point do I get up and leave the room and go to the bathroom. But I just kept sitting there and saying Okay, Hal? Listen for the still small, small voice of God. But I couldn't find it. Because I was so distracted by my stomach hoping that it would just stop. My eyes were closed, I was hunched over and I was just praying, God stop this. These noises. This is embarrassing.
Well, then one of the other members spoke out of the silence. I was so glad that he started speaking because the attention could be taken away from the sounds that my stomach was making, to the words that he was saying. And he gave this beautiful share. I won't be able to repeat it, but the essence was he was comparing Quakers to the Shinto Buddhists of Japan. And how the Shinto Buddhists, I believe this is what he said, believe that there's that of the divine in each of us. In each of us is the light and the light is within us and the light is perfect. Each of us as perfect in our own way, as we are.
And as I heard him say that I realized I was among friends. These are Quakers. These are older Quakers, they've been sitting silently for many, many years, in this Sunday morning gathering and they're not thrown easily by funny sounds coming out of some guy’s stomach. So as he was speaking, I got a new perspective. I realized I was among friends. And interestingly, right about that moment, my stomach actually settled down. And I was finally able to settle into the quiet.
After the hour silence, they have a time when you can share things that might not have been appropriate to say during the meeting. And I was thinking, I'm gonna say something about my stomach and kind of apologize or explain why it was happening. But then I had this little glimmer of the Divine Light within that said, Hal, now's the time to say it, say it now. And it was very clear to me that the voice was saying, the still small voice said, Say it now, Hal. So I opened my mouth and I spoke, I'm living with an illness called M.E., myalgic encephalomyelitis. It's a multi-systemic illness. And one of the symptoms that I've been dealing with lately is a very noisy stomach. Well, I spent the first half of this meeting, battling self-consciousness about the noisiness of my stomach. And then I heard the previous ministry, I heard the previous share. And I was reminded that I'm among friends. And that I'm just perfect the way I am, noisy stomach and all. And I'm so grateful to realize that I can come here and be myself. Noisy stomach and all. I don't know if I said it exactly like that. But it came out and I felt good about it. And then I let it go. I also mentioned that interestingly, ever since the previous share, my stomach had settled down. For the rest of the meeting, my stomach was very quiet. It settled down.
So that's my little story about body sounds — how embarrassing body sounds can be, like burping or farting or these noisy gurglings in my stomach, but it's a human experience. You know, these are bodies and they make noises. And why do I have so much shame and embarrassment around the fact that my body is making sounds? The truth is that each of us has that Divine Light within and we're perfect just as we are — body sounds and all.
So I have one other story to tell about body sounds. And it's a totally different subject, but I think it's worth it. For the last 25 years, I've been teaching mass harmonica lessons in schools. I walk into a school and hand out harmonicas to the entire third grade or to the entire fourth grade. And within a few lessons, I give the entire grade level a foundation for a lifetime of playing the harmonica. And I developed a system that I am so proud of. It was so effective. It was a highly effective system. I could walk into a school and connect with those kids so quickly and get them playing real music on a harmonica because of this system that I developed in no time at all. So I'm going to just give you a brief explanation.
I say that in all beginning harmonica playing, there are only two choices — blow and draw. The first step in learning to play the harmonica is knowing when to blow and when to draw — what it feels like and sounds like to blow and what it feels like and sounds like to draw. So before we ever picked up a harmonica, I introduced the students to hand motions, full body motions illustrating the push and the pull of the diaphragm. Push was a blow and pull was a draw. We would do this dance-like pushing and pulling where they would imitate me. “I go then you go.” “Blow draw Blow, Blow draw blow” with hand motions. It was is a beautifully kinesthetic approach to learning to play a musical instrument. After an extended period of time of mastering the hand motions without a harmonica, I would put a harmonica into their hands. Then we would continue the call and response, “I go, then you go. Play exactly what I play with hand motions at all times.” And within minutes, a whole chorus of harmonicas playing in unison would make a beautiful sound. And step by step I would add new complications. We added the harmonica going down and up and added some tonguing. The first song that we would learn was nothing but blows and draws and up and down. It was Turkey in the Straw.
blow D blow, blow, blow, blow D blow D blow D blow, blow D blow, blow, blow, blow D blow, D, D, (the D stands for draw) blow D blow, blow D blow, blow D blow D blow D blow, Blow D blow D blow.
And there were only two rules for mass harmonica instruction. Rule number one was “hand motions at all times.” This was the key to the success of this method. It was a full body approach to learning that harmonica. And rule number two was “no individual tooting.” You can toot whenever you want in the playground, when we're not in class, you can toot at home, you can toot on the bus. But when you're in my class, there is no individual tooting. When we toot, we only toot together, the only time that tooting is allowed is when I've asked you to toot as a class. And I will say this with a totally straight face.
And the beauty of the way I taught was, I would walk into this large class. Like for instance, let's take Bucyrus Elementary School. I spent a year residency there. I was there once a week all year. And I was teaching the entire third grade to play the harmonica. The entire fourth grade was a choir that was learning my song, My State Ohio, which sings the 88 counties of Ohio in geographical order. The fifth grade was doing stick dancing, and banakula making.
But the third graders were playing the harmonica. And I’d walk in there. And within 10 minutes, I’d let them know who's the boss. In a fun and funny and powerful way. I let those kids know who was in charge, and that I don't mess around. But I was constantly messing around having fun. Like I had this humor. I had this humor mixed in with authoritarianism. The teachers were amazed. In a calm and fun way, I created a very powerful technique for classroom management.
I'd use this one technique in order to get the kids quiet. I’d sing “cuckoo cuckoo” in a hooting voice. And they’d respond “cuckoo cuckoo.” And after that I demanded immediate silence. Every 10 minutes or so, I'd say, Great job, it's time for a two minute break. Talk amongst yourselves. Let it out and the place would get loud. And then I'd sing “cuckoo cuckoo,” and they’d respond “cuckoo cuckoo,” and then immediate silence. And I didn't stand for anything less than perfection in the silence.
And when they had harmonicas in their hands, there was no individual tooting. They learned that from the beginning. You can’t make a single sound with that harmonica, unless we're tooting as a class. So of course, I'm talking about tooting and they're all thinking about farting. But I never crack a smile and they can’t believe I’m saying this. I go around and I asked the third graders, what are the two rules and they'll say, “hand motions at all times. And no individual tooting.”
I loved teaching these classes so much. I miss it so much. They called me Mr. Hal Walker. I was so good at it. I so regret that I never created the teacher manual about how to bring this into your school if I can't be there.
You know, my hand motions were so big. They were full body motions. And I would do this one thing. I’d say, push, pull, push with a full body motion and then I’d get so into it that my legs would slide into the splits and I would be tottering with my legs spread, about to fall down and calling for the class to help. Somebody come help me! I'm about to fall down! Then the whole front row would rush up to save me and hold me up. And then they’d get back to their seats and we go on back to the teaching.
And whenever someone did well, I'd go up to them and I'd say, what's your name? And he'd say his name. I'd say, it is a pleasure having you in my classroom. I heard you playing. And that was excellent. Thank you so much. And then I'll put my hand out to shake his hand. And then they’d usually give me a very weak handshake. And I’d take that opportunity to teach them the proper handshake, firm squeeze, small shake. Over and over again for a year, these kids were learning “firm squeeze, small shake”, and to look me right in the eye when we shake hands. We were practicing hand shaking as part of the harmonica class.
Anyway, you know, it's all fun and games while I'm sitting here telling you guys this but I've gone through so much grief — letting go of the idea that I'm a harmonica player. Letting go of the idea of these mass harmonica lessons that I loved so much. But what does God have in store for me now? What's in store for me now? This is the life I've been given. This is the path I've been given. How can I be of service? How can I help others? Show me how this illness can grow me.
And I've grown a lot. I have grown a lot. This illness is growing me. It's been a painful process of growth, but it is growing me. I don't get to be driving around Ohio teaching harmonica lessons. Instead, I'm going to the Quaker meeting on Sunday morning and sitting with a very nice group of older folks listening for the still, small voice of God. I left that Quaker meeting last week with this little idea, this thought of my alter-life, the alternative life that I might have lived as a minister, you know, following in my dad's footsteps. But instead, I got into the lying, cheating, stealing and the addictions and the drive and building the Hal Walker enterprise — proving to the world that I'm amazing, creating havoc. You know, I didn't always create havoc, but I created my share of havoc… and I created my share of beauty.
So I'm glad to share this with you today. Thank you for listening to my story. Body Sounds. Enjoy living in that body today. It’s not going to be around forever. Believe me, I'm learning that the hard way. Anyway, I really wish you well. I'm so grateful to have this platform. I'm grateful for this way to connect with you. Tell me. What are the body sounds in your life? (lol) Leave them in the comments. Tell us your favorite body sound or your least favorite body sound. Or the most embarrassing time around a body sound or your thinking in general about body sounds. All right. All the best to you. Love you. Bye bye. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to Living in a Body. This episode was produced with the intention of being consumed as a podcast. I hope you’ll click the PLAY button above to listen. You’ll find the full transcription below. Enjoy. H
The Money Situation
I want to talk about money, but I'm scared. I keep thinking, “You can't say that, Hal. You can't tell them that.” I want to talk about my relationship with money and my sordid history with money, but then I think, “nah. Hal, why do you want to talk about that?” I'm asking myself that question and I'm not sure why. What is it that drives me to come on here and tell all my personal business? What is this obsessive need I have? Is it some sort of compulsion to confess? I'm not sure what it is. But I'm a storyteller, and I have a good story to tell. It has to do with money and my relationship to money. And my story is the only thing I know. So I'm here to tell it. What do I got to lose? You know, I'm laying here in bed 23 hours a day, contemplating my existence. So I'm here to tell you a story. I hope it can be helpful. I hope maybe, maybe it will help somebody. In the 12 Step Recovery tradition, it's all about telling our story. We tell our story so that we can help somebody else. So, I have my story. Maybe you can glean something off of it. And I hope it's useful.
The whole topic got started when I purchased two new devices, two devices that have improved the quality of my life. I'm excited about both these devices. I can't wait to tell you about ‘em. And it made me think about money. It's a long story. Here we go.
As young people in my family, we always had a joke. My dad would come to us with a serious look on his face and say, “Son, how's the money situation?” My dad loved to talk about the money situation. That's what I'm here to talk about today — the money situation.
I think this part of the story kind of begins on May 1, 2020. I was doing well on TikTok. I had introduced the worldwide TikTok community to the melodious khaen, the grandmother of the harmonica from Southeast Asia. And I was in my living room. I needed another video. You know, I was posting every day and I was running out of ideas. It was late afternoon and the sun was shining in my west-facing antique windows with a glow on the wall. And I picked up the E minor khaen and I played a little melody. And it lasted about 40 seconds. And that performance changed my life. That actual recording of that 40 seconds led to me becoming a world famous khaen player, creating two hit singles. One of them you can find on Spotify. It's called Midnight Sun. It has 48 million listens. And the other is Banakula @ Meh. It has like 18 million listens. That means since those songs went up on Spotify, I've been getting paid every month. And as I have been laying in bed mostly bed bound, unable to work, brutally terrorized by this illness myalgic encephalomyelitis, I've made more income in the last two years than I've ever made in that period of time for my whole life. And I can't tell you what a blessing that is. The timing couldn't have been better. These songs came out then this guy, @llusion remixed one and made it the song of TikTok 2020 And then this guy @ramzoid remixed another version and it became the song of Instagram 2021 and it has had a profound impact on my life in a big way financially.
The other big financial game-changer was in the fall of 2021. I had a significant downturn of health. You know I was going strong in 2020, I was having one of the best years of my life. In 2021 I started having downturns and then I had a big downturn. Around August, I had this really, really bad crash that brought me to a deeper state of illness. And I called my old friend David Ford. And the first thing out of his mouth was, “Hal, I'm coming there. I'm gonna come up there. This weekend, I'll be there.” This old friend from college, dropped everything, and drove from Winston Salem, North Carolina, all the way to Ohio to help me out. He drove up here and he stayed with me for a week. He cleaned out my basement. You know, he helped me around the house. He gave me moral support. He laid in bed with me one night while I was in the grips of a crash. And he came up with an idea to have a fundraising concert. And he pulled together a team to make it happen an they created a hugely successful GoFundMe fundraiser concert. All for me. It was amazing. It was wildly successful.
So all of a sudden, I had all this money. And at the time, I had a full time caregiver that was incredibly, unbelievably expensive. We didn't know then what care costs, so we got the first guy we could find and Arnel was a wonderful caregiver and charging $2,100 a week. I had it figured out in my head. Well, at this much a week, the GoFundMe, gave me about 50 weeks of caregiving and that thought was rather sickening, because I know how fast 50 weeks goes by.
But then I started feeling a little better. And we let go of Arnelle and had part time helpers that were much less expensive. And I had all this money. And I discovered the joy of interest. I put this money in interest earning accounts. You know, I sought out high interest accounts. I bought a couple I-bonds. And I found the highest earning interest over at CapitalOne Bank and put my money in the interest accounts and I started watching that money grow. And I started hoarding money. I realize that I had become a money hoarder. I don't know what my capacity to earn in the future is going to be, so I started putting that money away and loving watching that interest grow every month.
Okay, let me just pause. I'm just starting to feel a little uncomfortable here. I don't know why I'm telling you all this, but it's leading to something. It's leading to something important. So stick with me. I'm just going to keep going. Let's keep going. Let's trust the process. All right, here we go.
So I have this bunch of money in savings. And about four months ago, my health started. Week after week, every week I was in a deeper state of illness. I've had a traumatic four months, it's been terrifying. You know, there's no other word for it, it's been terrifying and traumatic and devastating. And I am left bed bound, mostly bed bound. very ill with no prognosis, needing a wheelchair to get from this room to the bathroom and spending most of the day in bed feeling quite ill. I wanted so badly to hold on to my independence. But at some point it became very clear I needed a caregiver. So we reached out to someone and I've been paying him weekly.
And after being this money hoarder the saver of money. It's very difficult for me to let go of that money even though it was given to me for this purpose, for the purpose of my care. It's been very difficult to let go of it. I had the idea of this money going to my daughter and my daughter's children for their college and leaving a financial legacy behind. But today I need a caregiver I have this blessing of a man. Anytime I need anything, I pick up this walkie talkie sitting by my bedside, and call his name. And he comes, he comes and helps me in whatever I need help with. He's totally managing the household. He calls it tending the compound.
But this week he’s been out of town and I'm grateful that I've experienced some independence again, and I like it. So I'm not sure what the future holds with me and caregiving. But I prefer to stay in the day and today I'm grateful that I'm able to pay my kitchen manager named Leah, I'm able to pay my caregiver. I'm very grateful.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
So this is the part where I confess to you how I used to be with money. Here we go. You know, I never had a wife or a budget to hold me back. If I had the money when I wanted something, I would buy it. When I wanted the musical instrument, it would get in my mind, and I had to have it, like that harpejji and that harp, and that African mbira, and all those other things, and there was nothing holding me back. And I would usually push the button, or hand over the card and get this thing into my life. And therefore I have a whole attic full of stuff. I have a whole house full of musical instruments that I'm unable to play today. And I'm very sad about it. I'm sad about the part that I spent so much money and collected so many instruments. And I'm sad about the part that I'm unable to use them today. So anyway, I have this history of compulsive buying where it was just like, Yep, I want that. I'm going to get it, bam, I've got it. And lately with this sponsor I have in my program, I'm really looking at this impulse of mine, and I have a new agreement with my sponsor. When I want to buy something. I first talk with him about it. And his response is “Hal, if it's a good idea today, it'll be a good idea in a week. If it's a good idea today, it'll still be a good idea in two weeks.” So we'll use the PAUSE factor. And from what I hear, God is in the PAUSE, P.A.U.S.E. is Pause Action Until Serenity Enters. So I don't want to be making a purchase that is out of the excitement of needing something or finding out about something or wanting something. I want to make my decisions from a place of quiet and peace and pause.
So for a while I was researching this device called the FreeWrite. As you may know, I'm hypersensitive to screens. After spending years looking at my phone way too much, I no longer look at my phone, for even a moment, it's too risky. And I no longer use my laptop for writing. Again, I'm doing whatever I can do to avoid any further crashes. My brain cannot handle the movement or the light of a screen, it’s caused crashes over and over again, these surges of adrenaline, each one bringing me to a deeper state of illness.
So I was looking at this FreeWrite. And I thought that this might be the thing that brings writing back into my life. It has an e-ink screen. And it's very lightweight, it could sit by my bedside at a pound and a half. I could pick it up throughout the day. And I could type. Because the first 75 episodes I wrote on my laptop, on my MacBook Pro. And that was suddenly off limits to me. I didn't know what I was going to do. But I brought it to my sponsor. And he said, “if it's a good idea today, it'll be a good idea in a week.” So we talked about it in a week. And then we talked about it in a couple of weeks. And my sponsor and I agreed that it made sense to give this purchase a try. And I bought it and it came a couple days later. And I love this thing. The FreeWrite Traveller.
It is so satisfying. The keyboard is so fun to type on. I feel like I'm literally slapping the words down. Thankfully back in 2021, I learned to touch type. I spent a couple months going through those exercises. After years of hunting and pecking. I finally learned to type and today I'm so grateful because I pick up my FreeWrite Traveller, and I just start slapping those keys, and it feels so good. And the words appear on this really comfortable screen. This comfortable small screen, it only fits about one paragraph. You can't really do editing, like I can't be moving paragraphs around. But it's for creating drafts. And it all goes up into the cloud. And I'm writing about 3000 words a day on this thing. It sits by my bedside, it's light enough that I can just pick it up real quick and my fingers start flying, throwing words, slapping words down. It's got a very satisfying sound to it. The keyboard has a very satisfying feeling I highly recommend it. If you're looking for distraction free writing. Here, let me play a little bit over the microphone. (Sound of Typing)
Okay, that was fake typing. I'm not that fast of a typer. But I am getting fast thanks to the FreeWrite.
So that was a great purchase I feel really good about. It has improved the quality of my life. Those are the kinds of purchases that I want to make. With the help of my sponsor, this was an abstinent purchase. And it was the PAUSE that made the difference. The real challenge will be using the FreeWriteto write a full episode on Substack. That's coming soon, I hope.
Then the next purchase I made (thanks to the fact that I have some money in the bank) was a second wheelchair. I have a wheelchair downstairs, I have a stair glide for going up the stairs. And I needed a second wheelchair on the second floor. So I ended up going with the Matrix Ultra carbon fiber wheelchair. It's lightweight, it's foldable. It goes around the little tight curves and my upstairs really nicely. When I first got it, I was like “Oh, I don't know, this one feels different than my Falcon. I don't know if I like it.” But once I got it upstairs and rode it a little bit, it's a little more upright. It's lighter weight, just a little smaller, it fits through the doors easier. And it was a great purchase. And it was the same thing with my sponsor. You know, if it's a good idea today, it'll be a good idea in a week. And we PAUSEd. We PAUSEd for a couple of weeks, and then I pushed the button and it came two days later, in a big carton already assembled.
So I have these two new devices in my life that are adding to the quality of my life. I'm very grateful. Every Monday I fork over a big chunk of money to my caregiver. And that money was given to me for this purpose. So I just gotta let it go and I gotta be grateful. You know, I still can consider how much care do I need?
That's basically what I wanted to say today. I went to a new doctor, Dr. Waikman in Akron, and I loved it. I liked them a lot. We had a nice conversation. I feel like he listened to me. He asked some good questions. He kept saying, “What questions do you have?” I feel like he's someone that I could build a relationship with. And I've been missing that, a local doctor that I really feel close to. And he gave me the attention that I needed and has some ideas.
But I've been in pretty rough shape. I'm down to 145 pounds, I usually weigh 160. So I've lost weight. My legs look like the legs of my dad when he was dying of cancer. My arms have no muscle tone. They're just skinny little arms. I look in the mirror at 145 pounds, and I'm just very, very skinny. Maybe I'll take a picture and show you. And today my ears are ringing super loud. I am often panting with breath. I'm just in a lot of discomfort.
But the good news is I have not crashed in three weeks. Three weeks from today was my last crash. I've learned my boundaries and I'm staying within them. I'm not looking at the screens. I don't even give myself the option to glance at a text. This is coming from a guy that used to look at his phone 100 times a day. I'm sure God has a plan. I am learning how to live a life without constantly checking my phone. Without constantly checking my email, without constantly checking TikTok or Instagram. It's a slower way of life. This is the slow life and from what I understand, slower is usually better.
So dad, the money situation is not bad. I'm learning a lot, learning how to build some interest, learning how to let go of the money for things that are important. And I remember your phrase, I'll never forget it. “Money is st,” you always said. I'd give it all away for just 20% better health. Alright, dad. Thanks for asking. I love you.
So I really appreciate you listening. I've gone on and on. I hope it all made some sense. What's the moral of the story? The moral of the story is…to be honest, I'm not sure what the moral of the story is. I bet it has something to do with gratitude and humility. It wasn't me that got me into this privileged position of owning two wheelchairs and a stair glide. It wasn't me that put this money in my bank earning interest. It was a force much greater than me. It was a whole community of people that showed up when I needed it. I realize there are so many people living with this illness that don't have the support that I have, the privilege that I have and the funding that I have. So I've got a lot of work to do in the humility department, and also in the gratitude department.
But then on a more practical note, if you have a history of impulsive buying, like I do, I needed to get help. You know, it's helped me so much to have a sponsor, someone who cares for my best interest, guiding me and helping me make decisions around money and all kinds of life matters. Enjoy money, enjoy how you can use it for the betterment of your life and others lives. But don't hold on to it with a grip hold. (lol) This is coming from a guy who has just a few weeks of experience with this new way of life. I'm brand new to all these things I'm saying, but here I am sharing my little story with you in hopes that it might help. And remember that acronym PAUSE, Pause Action Until Serenity Enters. That's been helpful for me.
Anyway, leave a comment, tell me about your relationship with money. Thanks for listening. I appreciate you. And I love you. I miss seeing you. Keep praying for me. I'll pray for you. I really do. I pray for people at night. I get down on my knees and I think about people and I say God, give them all the gifts. Sheesh, have a good time. Thanks for listening. Bye. ❤️
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome. To listen to the recommended podcast version of this publication, tap that PLAY button above. Enjoy.
BTW… “Quiet Time with Hal” is ongoing…
Click here for more info
Sunday afternoons at 4:00 EST on Zoom. All are welcome to share 20 minutes of quiet. Join here: Zoom Invite Link
In-person (Kent, Ohio)— Schedule one on one
Water, Color and Letting Go of Control
The story begins when I got a card from my friend in San Francisco named Amir. He was just sending me a card letting me know he was thinking about me. And my first reaction was, I want to be the kind of guy that sends cards. I just appreciate it so much when people send me a card, especially with a personal letter on the inside or some sort of personal illustration. He created a little illustration of Ohio and I loved it. And I thought, “that's the kind of person I want to be.”
So within minutes, I was over on Amazon, buying 100 blank cards. I got these nice brownish cardstock cards that you fold in half, and they come with an envelope. I wasn't sure what I was going to put on those cards, but I knew I wanted it to be personal and original. I was going to become a guy that sends cards.
Then maybe the next day or next couple of days, my sister Caroline let me know that she had gotten into water coloring, and I thought that was cool. She showed me a few of her watercolors and I thought, “wow, KK, that's great.” I love the fact that Caroline is getting into water coloring.
I've ventured downstairs the next day and got out my calligraphy set that I had purchased a couple years ago, thinking I would become a calligraphy artist and I set it all up in my bed. Within minutes I failed at calligraphy, I had a sense that calligraphy was not my thing. It was just too complicated with the ink and trying to figure out all those letters. I failed. And right after my calligraphy attempt, I had a crash. I looked down to the text and had one of these awful seizures or these crashes. It gave me a bad feeling about calligraphy.
So it occurred to me that maybe water coloring… maybe I could somehow incorporate water coloring into this card-making effort. So who did I call? I called my amazing mom, my neptogenerian mom, I think neptogenerian is a word. And I asked her to bring over water coloring supplies. And within hours or at least a day, there was my mom, huffing and puffing up the stairs to bring her bed bound, chronically ill, 58-year-old son supplies for water coloring.
My mom's amazing and she gave me a lesson. She gave me this beautiful lesson about taping off the edges, creating these little little rectangles of color, just throwing paint down. There are no rules, we would first draw a black line, a random black line, then throw some paint down. And right away we experienced success. And then I took off the tape. So it has really clear white edges. And then I cut these little little rectangles. Within minutes, I had them rubber cemented to these cards that I had purchased. My mom showed me the freeform way to create beauty using watercolors.
And then I started sending cards out. I started collecting addresses through text, and then sending out these cards with a personal message on the inside. And it felt really good. It felt good to put the stamp on it. It felt good to write the address on it. I highly recommend it to anybody who's wondering. It was a very satisfying process. I just hang it outside the mailbox outside my house and the mailman takes it away.
Well, um, so I adopted this freeform style of water coloring and I even invited a friend over and I taught her how to do this and we together we made a really beautiful set of rectangles using this. The first thing I said is there are no wrong marks. Yeah, there's no wrong way to do this.
One way to do it, though, that was the lesson, you know, just throw paint down, throw water down, throw paint down. And that's what we did. And we had success. And then I bought a set. I needed more, I needed more, I only had like 10 colors, and I needed more. So I bought a set of 30. And it included something called a water brush. And I had no idea what a water brush is or what to do with a water brush. So it's a brush that you fill that you fill the handle with water. So I assumed that you just use a like a brush, and I've dipped it in the paint and started painting. But it was weird because it was hard to get the color off then once you add the color, so I was confused. And the next day I made a call to a fellow in my 12 STEP program, a guy named Rob in New York. And right away I said, Yeah, I've been water coloring. And he said, I love water coloring. He's a costume designer and a theater director. And he uses watercolors to create costume designs. Like he said he would create a dress and then color the dress in. And I was so curious, I was so used to the freeform style of water coloring, I had no idea how you could stay within the lines.
So he mentioned a technique that I didn't know about, he would pre wet the paper right up to the line. And then when he would add paint, the paint would follow the water.
And I was very intrigued. So the next day as I broke out my watercolors and put a few black lines down on the paper, I started playing around with this idea of while adding water. And then I had this huge epiphany, this moment of truth. The water brush is not about painting paint, it's about painting water.
And my mind was blown. And I picked up this water brush and I drew a clean line of water right up next to that black line. And when I added the paint, when I added the color, the color flowed like a little river. Right along that perfect line of water.
It held … the water holds the color.
And I was blown away by this. And I adopted it. In that moment I adopted a new technique.
So I got some real nice watercolor paper and Cameron and I went to Kinko's and we cut these three inch by four and a half inch cards. And we taped off the edges and I started making abstract designs using a black marker and then filling those designs with solid color, with bold solid color. And now I'm creating little mini painting after mini painting, using this new technique that I'm loving.
For several days now I've been making these very satisfying projects using a very precise method of staying exactly within the line. Going right up to the line perfectly. You can see some samples here in the Substack but I've just been loving it. I'm loving choosing the color. I'm loving choosing the palette of colors I use for each piece. I tend toward fall colors. I love muted colors and fall colors, and almost Southwestern kind of colors. And I'm also using some bright colors, but I'm creating bold shapes, abstract shapes with bold, solid color.
Which is very different from from what I had learned from my mom.
In my new technique, the water brush plays an important role. You bring that water brush right up to the line and paint the stroke of water. A beautiful stroke of water perfectly right up next to the line. But every once in a while there’s a disaster. When the dam of water breaks and one color flows freely into another color, and I’m like NOOOOOO, It’s funny … and terrible.
So it's been it's been really fun. Then on Sunday, three friends came over at Sunday morning. And I invited each of them to join me in water coloring. And I showed them my new technique of creating lines and then staying right within the lines. It's kind of glorified paint-by-numbers. It's like I actually am creating the design, but I'm just filling in the black lines with color. Sunday early afternoon, my friend Annette was over, and I had shown her my precise method of creating perfect shapes and perfect lines. And earlier that day, I had asked my mom to come over to give me a second lesson. Annette’s a Quaker and Annette and I do a lot of sitting quietly together. We sit in silent meeting; we'll have long periods of silence. And as we were watercoloring on Sunday afternoon, it was very quiet in here, we were both working on our own project. And then we could hear my mom come in.
My mom is a force to be reckoned with, if you haven't met her. Her name's Janet Walker. And she is a force to be reckoned with a creative, artistic, amazing, energized energy bunny, going non stop cleaning the house, landscaping the yard, at the age of 92, still going strong.
And we could hear her huffing and puffing up the stairs. And she walked in with a big coat on, holding this drape, holding a purse, holding a water coloring book. And she sat down, and my mom doesn't hear very well says she speaks, she has to speak kind of loudly and I need to speak loudly. And normally, when people come into my room, I ask them to whisper. But my mom gets special privileges, she doesn't have to whisper. So she sort of stormed in with a very great force of energy. And she sat down at that table where Annette and I were sitting, and she broke out the paper. And she broke out a brush. And for five minutes, I watched an experienced artist paint with abandon. She just let it go. She didn't matter if her brush that was already filled with one color touched another color. She’d just dunk it in the water, slap on a little bit more paint. And within three minutes, she created this beautiful masterpiece. She created this very simple but beautiful masterpiece. Totally different than anything I had created.
She looked at my pieces and said, “Those are good, but you've really got to let go of control. You've got to let go of control, Hal. I thought you were the one that knew how to let go of control. I thought you were the free spirit.” Well, little does my mom know, I'm a highly controlled person. I don't know if you know this about me. But back in the 80s, I was a I was a bit of a hacky sack star. But my hacky sack playing was very controlled. It was very precise, very controlled. And the guys that were really good could let go of control. They could just flow. They could flow and be wild. And that's what I saw in my mom. She painted with abandon. She painted like a wild woman.
Yes, she's not seeing very well either. So she didn't even care that she could see. She didn't even care what particular color she was putting the brush in. She just throw it down. And her strokes were just so fluid. And so it was all about the flow, and it happened fast. And Annette and I both were just stunned at her, watching this master at work. By the way, Annette asked my mom if she was an artist, and my mom, in some very unimpressive way, said, “Well, I spent many years substitute teaching. But as a young person, I had a job at Scott Foresman designing.” And I wanted to stop her and say. “Mom, stop. You're an artist. You're one of the finest artists. I know. I grew up with you. And I have seen your art.”
We need to get a Janet Walker gallery show going. This woman is an artist. Forget that she spent many years substituting in local schools for 50 bucks a day. Forget that she worked at Scott Foresman. This woman is an artist. Mom, you're an artist. Get over it.
So Annette and I were stunned. We watched as this woman stormed in, threw some art down, and then stormed away. It was like a tornado of creativity hit us.
But my mom left me with that one note. She said, “Those are good, but you've got to let go of control, Hal,” and I realized that's the case. I'm gonna - I like my controlled water colors. I like them. I have a stack of them sitting by my bed. And I'll just flip through them and gaze at them , at their beauty. And I'm loving these pieces that I'm creating.
And I'm loving what my mom created. And I'm loving what my friends have created. I'm a huge fan of water coloring. In fact, I'm going to start a Water Coloring with Hal session where you can sign up for free. There's Quiet Time with Hal; now we're going to have Watercoloring with Hal.
Then my sister Julie showed up yesterday. And within five minutes of her showing up, I had her working on a watercolor project, because that's just the way we roll around here.
And I said, “Julie, you got two choices. You can either do my style, which is very solid, you know, precise lines, solid colors, or you can do mom's style, which is loose, and lots of fluidity,” and Julie said, “Can I do my own style?” And I said, “Yes, you can.” And Julie, of course, being the genius that she is, you know, within minutes had created her own style and just made three really nice pieces that I was actually jealous of. I was like, Ooh, I can't do that.
Well, I'm still drawn to the controlled shapes. I'm still drawn to the controlled lines. But I am going to try and loosen up a little bit. Oh, this is one thing. My sister was here. And I was watercoloring. And I made a sound of shock like, “Oh! Oh, no.” Like I had messed up. And Julie knows how important it is that I stay calm. And Julie said, “You have to learn to give up a little control, don't you?” She saw it in me, too.
I am a controlled artist. I'm a controlled perfectionist.
Maybe the stories that I'm telling, these hundred percent improv stories, are good for me because I'm not able to do that fine editing that I loved doing so much in the first 75 episodes.
But here's one more aside about Julie.
We've been rubber cementing the paintings to these brown cards. And I asked, “So, Julie, do you know how to use rubber cement?” And she looked at me with a funny look, like, “Hal, do I know how to do rubber cement? I'm the daughter of Janet Walker.” And that said it exactly. We grew up with rubber cement. Rubber cement was an important part of our lives. But interestingly - don't tell her this - but Julie did a poor job at rubber cementing. When you're rubber cementing, it's important that rubber touch all areas of both papers. Like you've got to have a full square of rubber on the card and a full square of rubber on the painting. The rubber cement only holds when there are two surfaces of rubber that are attached together. And Julie's corners are really sticking up from the edge. You could tell that she only put a dab of rubber cement on the actual card. Anyway, don't tell her I said that.
It's okay, Julie.
Obviously, I have some letting go of control to do.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Anyway, that's my story. I'm enjoying water coloring. I love it. Come over and watercolor with me. I'd love to have you. My favorite guests, the guests I'm looking for, are guests who are willing to sit quietly and watercolor and whisper when we talk.
If you're one of those people, please stop by and let's do some water coloring.
And I think that's it for today. I just wanted to share that little story about how it all came together in such an interesting way. You know, serendipity, synchronicity, one thing happens, then another. And before long, I'm becoming a professional watercolor artist.
That's my story. It was a little jumbled today.
But thank you so much for listening to Living in a Body. Hope you're enjoying living in your body today.
And I look forward to seeing what happens next. Two weeks without a crash. Keep praying for me.
I'm feeling a little bit more like I know what my boundaries are, I know what my limitations are, and I'm staying within them.
So stay in touch. Leave a comment. I'd love to hear from you
Bye bye
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I’m glad you’re here. Wishing a HAPPY BIRTHDAY to my dear sister Caroline. Please click the PLAY button above to hear the recommended PODCAST version of this episode. (15 min) Enjoy. ❤️ H
Bad Words and a Broken Moral Compass
Somewhere along the line, my moral compass got broke. And I'm gonna let you in on a little bit of that today. But first, I want to talk about the subheading for last week's post, there was a bad word in it, and when I came up with that phrase—it's the F word, by the way, I'm not going to say it now—but when I came up with the phrase, that word fit so perfectly, it was so beautiful. I felt like it came spontaneously. And I knew when I said it, it was the right word.
But then later on that day, or maybe the next day, before sending the post out, I was at one of my 12 Step meetings, and a woman was sharing. She said, “You know, back in the days when we were drinking and smoking and sexing and eating and swearing”...such and such and so and so. And it occurred to me that I am still swearing. I've let go of the drinking and the smoking and most of the other things that I used to do, but I'm still swearing and I thought, You know, maybe I should change this. Maybe I should take that word out of the subheading.
What kind of words do I want to be putting out into the world?
What kind of man do I want to be?
And I battled it. I battled it for a little while because it felt so good to use that word. But I realized not everyone receiving the Substack wants to see that word in a subheading. So I went around to some friends and I got several different opinions. One said “You could probably remove it from the subheading, at least keep it in the body”.
Several people said, “Hal, it sounds raw, it sounds like you. I think it fits.”
And after doing a change away from it to shucks or darn or dang, I went back. I re-recorded it back with the original F word. And I put it out in the world. And there you have it. So just know that I gave it some thought. I'm making progress.
I want to tell you a little story about the F word. I in my career became a master assembly giver. I gave assemblies that were so well-crafted, for 45 to 50 minutes I would have a whole school eating out of the palm of my hand, managing the whole school, managing the whole gymnasium with my calm presence. Over and over again, teachers were amazed at how calm I was and how I kept the attention. I kept the students engaged. I miss it so much. I loved that work. I loved walking into a gymnasium, setting up my sound system, and when those kids arrived, I had no fear. I was so relaxed, I knew exactly what was going to happen. And every time I performed an assembly I learned something and added it to the next one. So the next one was even better. And I got really good at it. I did a couple of “Hal Walker, Musical Explorer and Music That Fits in Your Pocket”. It was just magic. It was magic.
Anyway, many years ago, before I got so good, I did an assembly at Stanton Middle School. This was one of my first all-school assemblies. My residency was called “The Art of Play”. I was an artist of play and I was combining the art of the game of Go with harmonica and banakula and table tennis and stick dancing. Oh, and frisbee! Yes, the assembly was a collage of my different skills in each one of these playful disciplines.
And at some point, I lost the kids. Like, this was a whole gym full of eighth graders. And I lost them. They took over, and I was struggling for my life up there. At the time, I was hosting this open space night down at the Open Space gallery. Every Friday night, a big group of seventh and eighth graders would come and hang out at the Open Space and we'd play ping pong and basketball and Go and those guys from the Friday night gathering loved this song called “Don't Say the F-Word to Your Mother.” (To tell you the truth, I don't remember the actual title.) It was an old folk song that actually had kind of a funny message.
I decided to break out that song. I didn't even know the song. I read it off of a lyric sheet in front of this huge gymnasium full of eighth graders. And, apparently, it was a disaster. The assembly ended and the superintendent had witnessed this. And the superintendent came right up to me and afterwards said, “Please, please don't say that. Don't sing that song in your next assembly.”
I was so embarrassed. I went home and raked the leaves that night. And the whole night I was just so humiliated and embarrassed that the assembly had gone so badly and the superintendent had to come up to me and scold me.
The next day I returned and I wrote a mass apology to all the teachers. I went into the office and I put an apology letter into every teacher's box. This was the beginning of my residency called “The Art of Play”. It wasn't a good start to the residency but it ended up going well and we played ping pong and played frisbee and played Go and played harmonica.
But what I want to talk about briefly, before we close, is how somewhere along the line my moral compass got broken. You know, we didn't swear in the house. I grew up in a house that did not swear. In fact, I took it very seriously not to say God's name in vain. One of my sisters might say G-O-D, or Oh my G-O-D or G-O-D dammit. And I always took that very personally. I knew my dad hated that. And I think to protect my dad, I really stood up for my dad that there would be no taking God's name in vain. And every once in a while you might hear my mom or dad say the S-word but for the most part, we lived in a house that didn't do a lot of swearing.
But somewhere along the line, I picked up swearing. It was probably about the same time I picked up alcohol and marijuana. It might have been the same time I picked up stealing from grocery stores, that is stealing candy from the store. It might have been the same time I picked up cheating on tests. Cheating on my French test and my physics test.
It might have been the same time I got my driver's license. You know we'd be down in Birmingham, Alabama. The whole family would be gathered at my grandparents beautiful home up on Lenox road on top of Red Mountain. And when I got my driver's license, I would borrow the car and drive down into Birmingham. Drive down into the seediest neighborhood of Birmingham, 16 or 18 years old, and find the triple-X-rated movie theater parking in a little seedy parking lot behind this gross theater and hoping that nothing happened to the car so I wouldn't have to call my parents, and then coming back and being the charmed golden child of my grandmother. After a night on the town, coming back and being perfect in every way.
So if this was the beginning of my life, a double life. On one side, I wouldn't swear in the house, and I stood up for my dad for no swearing. And on the other side, I discovered the joy of swearing, the joy of doing what I wanted to do to make me feel good. So it reminds me of going away to college. And I stayed in the humanities college, Chapin Hall. And this was a hall of highly intelligent people who were history majors, philosophy majors, English majors. I was just a frisbee player from Ohio and I felt quite insecure among all these intelligent people from New York City and from Long Island and from New Orleans and New Mexico and Minneapolis.
And I remember meeting a woman who had never smoked and never drank, and had never smoked pot. And she didn't swear. Not only that she was the valedictorian of her class. And I just couldn't believe that that kind of person existed. Because in the last few years, I had ventured into the dark side, all those vices.
Having let go of most of my vices in 12 Step recovery, I'm finding out the kind of person I want to be. You know, I wish I would have found this person a long time ago. But I want to be a man of honor. I want to be a man of his word. I want to live a life of integrity. You know, I want to live a life free of the drug and free of seeking that self-centered pleasure, a man who's willing to look at his swearing and call it into question.
You know, I want to live a life of equanimity and contentment with the small things. I've been hanging out with this Quaker friend named Annette. And I'm just so drawn to the simple life of sitting quietly and listening for the light within me and looking for the light within you, and seeking God's purpose.
So anyway, that all comes out of using a bad word last week in my Substack. I hope no one was offended. If you were, I'm sorry, but you got the real me. And I'm so grateful for you listening.
I'm so grateful for the little community of people that is growing up here on Living in a Body. The people that share, that comment regularly, I thank you. Even the people that don't comment but are listening. Thank you so much. It's been a really meaningful venture for me. It's been such a joy, telling my story.
By the way, it's been a week since I had a crash. It's been a solid week since I had one of those terrible seizures that sweeps through my body. Full disclosure, I took an Ativan this morning. You can hear it in my voice, I'm imagining. I'm upbeat and getting a little bit of relief today.
I wish you the best. Enjoy this day and enjoy living in that body of yours. It’s not going to be around forever. Take advantage of it today and I'll do the same.
And hopefully we'll be back next week. Bye bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. To listen to the podcast version of this episode, please click PLAY above. I hope you enjoy. Big ❤️ and thanks to for her help formatting the last couple posts.
Quiet Time with Hal is ongoing…
Click here for more info
Sunday afternoons at 4:00 EST on Zoom. All are welcome to share 20 minutes of quiet. Join here: Zoom Invite Link
In-person - sit quietly with Hal in Kent, Ohio— Schedule one on one
Crash
This is a hard story to tell. It's a story that my mom may not want to listen to. It's a real story of living in a body. Living in this body, the Hal Walker body that I've been so blessed to live in my whole life. But it's been rough lately.
For the last several months, I've been having crash after crash, crash on top of crash, each crash bringing me to a deeper state of illness, and I want to talk about the actual episode of crashing. I want to give you some of the details.
So this last week, I went a week without a crash. My whole life has been centered around doing whatever needs to be done to avoid further crashes. After seven days, I was feeling pretty confident. I was basically not looking at my screen unless I was on Ativan, which was maybe two times in the last week. I was very cautiously asking my caregiver Mango to read my texts for me. I was waiting for Cameron to come over to read my emails and to look through my bank accounts. And I was sitting quietly with my higher power for hours on end, in the dark much of the time, sometimes with the window open.
And on this particular day, which was the day before yesterday (it was a Monday), I was laying here very ill looking across at the chair and saying, “God, it's just you and me today.” All day feeling incredibly fragile, like wondering what bite of food or what glance at my phone will make me crash. I was content with my new normal. I was like “Okay, I can handle this. It's not easy. It's a lot harder than it was two weeks ago, but now that I have mastered this avoidance of crashing, I can handle it at this level.”
And then at about five o'clock, Mango came up and opened the curtains because it was a beautiful day. And light came in the window. I had noticed that Hallie had sent me a text earlier of her most recent TikTok video. In case you don't know Hallie has been really killing it on TikTok lately, she is doing these original monologues that are just awesome. If TikTok hasn't been banned by the time you get this go check it out. (@ hallielooyaa on TikTok) She's really killing it. I love seeing my daughter using her creativity in this way.
Anyway, I had asked her to send me her videos because I'm not watching TikTok these days and at about 5:00, I said, “you know, I'll just listen to her TikTok. I'll listen to it with headphones, but I won't watch.” I glanced over at my phone. I pushed the play button. It's a one minute long video. 30 seconds later, I was in a crash.
Un-be-f*g-lievable.
It starts off…it's hard to describe, but it's almost like an epileptic episode or a seizure. It comes on suddenly. It lasts for no more than a minute, lately they've been 30 seconds, but the consequences are devastating.
It starts with a boiling, a bubble in my stomach, like my stomach moves in a weird way. I’ve been having a lot of issues eating. My gut lately has just been a place of turmoil and chaos and bubbling. So it starts with a bubble in the stomach and then I think, “oh st.” And then my brain fills with fear. And then I don't know the order of things, but then my heart starts to race and pump. And then what I'm picturing is a dump of adrenaline. Like my body is dumping adrenaline. And all that is followed by several very big burps letting all the air out of my stomach. That's why I have this feeling that these crashes are somehow associated with my digestion, my eating. It always starts with the boiling in the stomach, the bubble in the stomach, then big burps.
My immediate thought on Monday after having this was hopelessness, like, Oh, st, fk. Another one. I didn't have it beaten. I shouldn't have looked at that video. Why'd I look at that video?! That was so stupid.
And it's over in 30 seconds. I mean, 30 seconds later, my heart has stopped racing, and I'm left with the aftermath. The immediate aftermath is I feel better. You know, 20 minutes ago, I was lying sick in bed, and now my body is full of adrenaline, and I'm suddenly hungry. I suddenly can walk to the bathroom, no problem. Suddenly I feel a little bit better.
And then, little by little—this was four o'clock or five o'clock—little by little for the rest of the evening, that adrenaline started running off. And I could feel the drop. I could just feel the dropping. But then here's the pattern. This is a pattern by the way. It's happened over and over again 30, maybe 40 times over the last few months. Definitely more than once a week. I'm having this experience…each time it happens at a different moment. I remember early on, I was trying my hand at some calligraphy. I went downstairs, got the calligraphy pen out, brought it upstairs, did a little calligraphy, and glanced down at my phone at a text from my mom and—bam! Crash.
The other time my mom and I were making some watercolors together. I was staying really calm and I was having the thought as I was intently using the scissors to cut a piece of paper: “I’m actually enjoying myself. I can handle this. I can handle this level of illness.” Bam. Crash. 30 seconds later my whole life has changed. They come out of the blue. No warning. Or there's a momentary warning and I try to stop it. Several times I think I may have successfully stopped them…. I gotta simmer down for a sec. I'm getting all excited.
So on Monday, the crash happened. I was immediately filled with despair and hopelessness. I thought I had beaten it. And then the next day the next day the pattern is I have a hellish day of being wired, coming down off the adrenaline. It’s a terrible wired feeling where I cannot get comfortable in my body, shaking in the bed, crawling in the bed, trying to get my legs comfortable. And also I’m immune from the screen sensitivity right after the crash. I'm suddenly immune from screen sensitivity because of the adrenaline. It's like I'm instantly in a whole different body.
So I spent the day looking a little bit at the screen. I was cautious. But it was a hellish day. I had a visitor—I had my friend Annette over and we talked for a while. I've got little distractions here and there. But it was a hard day. Like one of the hardest days of my life. I keep having the hardest day of my life!
I have this journal where I write about my food and at the end, I write a few words about the day. Over and over again, over the course of the last few months, I write, “the hardest day of my life.” And again, “the hardest day of my life…harder than the last hardest day.”
Then guess what? I put out a Substack on Tuesday morning. The one about the song “Does Sound Have a Shadow.” And throughout the day, I was noticing comments coming in. I read a few comments, and I was feeling safe. I felt safe reading the comments because what my brain was telling me was I had the crash, I'm on the adrenaline, so I'm safe to read a few comments. Well, then at about four o'clock, I did a meditation. I did 20 minutes of meditation. Coming out of the meditation, I glanced at my phone and saw that there were a couple of comments. And I went to read one of the comments.
Halfway through the comment, crash. 30 second crash. It was a whimper of a crash. It's like my body doesn't have the crashes it used to anymore. They used to be much bigger, like they would last longer and they were more intense. But this was just a whimper, like my body just has a little bit of adrenaline to throw out. It barely lasted 30 seconds, but it was that same experience.
So this was two crashes in two days, and I haven't quite figured out the pattern. But normally, if there's a crash, the next day is the wired day. The following day is the new normal. And historically, that's been a very scary day. Waking up in the morning with a new level of weakness, lately it’s been a weakness in my arms where I can barely pick up a mug, or I barely have the strength to scratch my leg. So I never know what to expect on the third day, but oh God, it's getting rough.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
I so wish some doctor out there would take an interest in me and say, “Dude, this is fascinating. Let's hook you up to some cables and figure out what's going on.” Instead, I'm left to figure it out on my own. I can go explain all this to my primary. She won't know what the heck I'm talking about. I can go explain it to my functional medicine doctor, she won't know what the heck I'm talking about. I can go explain it to my Chinese traditional medicine guy. He won't know what I'm talking about. It's a mystery.
Myalgic encephalo-f****n-myelitis. Also known as chronic fatigue syndrome. I've got a nasty version of it, and it's shown its nasty head over the last few months, and I'm scared. I'm scared because I don't know how to stop it. For right now, I'm going to be more disciplined about looking at my phone. The phone is off limits.
Anyway, that's the story of the crash. I know I sound all upbeat and enthusiastic about it, but it's devastating. Over and over again. I mean, three months ago I was in a whole different place, and each one of these crashes has brought me down to a new level of illness.
You don't hear this particular story in the chronic fatigue syndrome world. Of course, I don't really know. I don't do the research. I have a few friends but I think this is a very specific pattern that's happening over and over again. I'd love to find other people who have found out how to stop it.
Alright, I think that's all for now. I'm grateful to have this life. I'm grateful to have a life. You know, there are a lot of people that would love to have a life right now. I'm sure my friend Reverend Steven Protzman would love to have a life right now, even if it were a challenging life. Of course, he's in peace now. I haven't been having a whole lot of peace lately. I'm feeling some peace right now because I'm on a half milligram of Ativan and I'm able to create. I'm a creative. I love creating! I love making things and telling my story. You know that about me.
Thank you God for this life.
Thank you for Mango, who is saving my life.
Thank you for my dear mom, who is just so heartbroken about my whole situation.
Thank you for my sisters and my friends that stop by,
and for all the tools I have to survive this.
I mean, I gotta say I'm getting an A+ in the hard class, thanks to my higher power. I couldn't do it on my own, on my own I'd be heading towards suicide. But I got a lot of support, a lot of people cheering me on and a lot of people praying for me.
So I hope you're well. Leave a comment, I'd love to connect with you. I won't read it though, not until Cameron comes over to read it for me.
Alright. Bye. ❤️
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. To listen to the podcast version of this episode, press the PLAY button above. Thanks for being here.
Quiet Time with Hal is ongoing…
Click here for more info
Sunday afternoons at 4:00 EST on Zoom. All are welcome to share 20 minutes of quiet. Join here: Zoom Invite Link
In-person (Kent, Ohio)— Schedule one on one
Birthday Banter
Hey, it’s Hal. This is the Living in a Body Podcast. Today is Episode 78 and it’s called…it doesn’t have a name yet because I’m just winging it.
I don't have a whole lot to say, so this should be interesting. It was my birthday the other day. My friend Pat from Kansas City sent me some beautiful flowers in a cute little tin wheelbarrow. It's been sitting on my bed table this week. And then my friends Julie and Brian brought me some nice day lilies. I think that's what they are. Makes a big difference in my room. And the window has been open for several days for the first time in months. I've been enjoying the breeze.
So I'm living an unbelievable life and I want to try to describe it to you. I have basically cut out all activity unless I'm on a half milligram of Ativan. I do all my activity for about four hours while the Ativan is kicked in, which is right now. But when I'm not on Ativan, which is most of the time, I'm lying quietly in my bed in silence, meditating and staring off into the distance. Contemplating reality and saying my transcendental meditation mantra and praying and doing everything I can to calm my nervous system to avoid any further crashes. I haven't told you the story, but for several months I've been having crash after crash and each has brought me to a lower, deeper state of illness.
Today, I'm pretty much fully bed bound. I use the wheelchair to go to the restroom. And I have a full-time caregiver–Mango–who provides all my needs. He showed up just at the right moment. I was really hanging on to my independence. And I finally told my sister Julie, I said, “Julie, get Mango here,” and she bought him a ticket from Kenya. And he showed up right at the right moment when I needed him. I am fully in need of a full time caregiver. He brings me my food, he pours the water, he heats up my broth. Sometimes he'll hold my pee jug, and he prays over me three times a day. He opens and closes the shade. And I am left lying here in silence. Doing nothing. I'm not looking at screens. I'm not opening my phone. Even Mango reads my text messages, because my brain is so sensitive. I cannot read a text message.
I've had some bad experiences with reading text messages where I will go into one of these crazy crashes that lasts about a minute but has devastating consequences. I don't want to even talk about it because it makes me…I'm not going to tell you the experience of the crash right now because it makes me feel like I'm gonna have one. But amazingly, when I have the Ativan, the fear of the crash goes away and I'm able to do a few little things like check my email, or record this podcast. Oh man, it's been brutal. The reality is there's a good chance that I will be needing a caregiver for who knows how long, if not for the remainder. And we don't know what's going to happen with this illness, but the way it's been going, it is not going in the right direction.
I’ve had a few visitors. You know, I started this thing called quiet time with Hal and I've had several people sign up and it's been really nice. I was mildly disappointed in the sign up. You know, people have busy lives, they don't understand the importance of Hal Walker and his quiet time! It does not seem to be on their first priority list. But it's cool. I’ve got some new friends too. I have this new friend Annette who I met at the Camp Friends meeting. And she is just so cool. She comes and sits by my side, and we whisper things back and forth. Spiritual things.
One of the things that's getting me through is my Twenty Four Hours a Day book. This is the AA literature published by Hazelden. Throughout the day, I will open the book to the meditation for the day, and I'll read the meditation for the day and it will guide my thinking. And over and over again, it's spot on. I love it. Like today is all about training, spiritual training. I must prepare myself by doing each day what I can do to develop spiritually and to help others. God tests me. Yes, He does, and trains me. If I'm not properly trained, I cannot meet the test when it comes. So I'm in training now. That really is a helpful way for me to think about my life. I can't do a whole lot, but I can do spiritual training. I must not expect to have what I'm not prepared for. This preparation consists of quiet communion with God every day and gradually gaining the strength I need. So that's what I'm busy doing here: quietly communing with a higher power, quietly communing with the part of myself that knows what the next right action is. Quietly communing with that hidden mystery that is living with me in this room. The hidden mystery, the love, the powerful love that abides in me.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Anyway, so I sit here with my ears ringing, feeling very ill, very afraid. And I just practice quiet. I practice calm all day long. So I think this will be a short one. I'll say that I had a nice little party. Three friends came over on my birthday and we sat around in the circle. I love that kind of thing! Man, that's what I want. I want people to come over and sit around in a circle. And let's share. Let's do little ceremonies and rituals and stuff. This alone life is brutal. People were not meant to live alone like this. I mean, I live with Mango, and he's wonderful company, but I loved it. The other night, three friends came over and we sat down and we took turns going around the circle giving our hopes for the next year. And I just love that kind of interacting. We were sitting on the floor with candles lit, and there was a flower in the center. That's what I'm all about. It's much harder to create ceremony and ritual when you're all by yourself in a bed in a room. So if you want to come over and have a little sharing time, just let me know. I'm gonna create Quiet Time with Hal and then we're going to do…I don't have a name for it yet, but we’ll have Sharing with Hal.
The trouble is, unless I’m on Ativan I have to be whispering, and very cautiously whispering. I do not have any strength in my voice. And by the way, everyone who visits has to whisper too because I'm so sensitive. Sometimes I'm even scared of a passionate whisper. Someone came over today, and they were passionately whispering. And I was like, “Whoa, hold back. Be careful. Be careful.” This is wild. Chronic fatigue syndrome, myalgic-ensephalo-fn'-myelitis is a nasty illness and you don't want to get it. I had no idea what I was getting myself into when it came into my life in 1991. There's no help for it. The doctors are clueless. It's like we gotta make it up ourselves?! We got to make it up ourselves how we're going to treat ourselves. There are no doctors. I'm going to this ME/CFS support group on Saturday nights, and everyone's in the same boat. We're making it up. We're making up our own treatment from the nastiest illness on the planet. It's like a bunch of cancer patients getting together and thinking, What are we going to do now? Let's figure this one out on our own. Unbelievable.
Alright, I better simmer down, I'm getting all heated. But I appreciate you listening. I've been writing letters. I've written a few letters, though I can't write when I'm not on Ativan. This is not an advertisement for Ativan, by the way. Use it cautiously. I am not promoting it. I use it very, very conservatively. Just to have a little bit of a life. But when I'm not on Ativan, I'm not strong enough to write. And then a half milligram of Ativan somehow takes the edge off my brain and maybe gives me just enough strength to write a little letter. So today during this Ativan session, I've written a letter, responded to some emails, responded to some texts. Now I'll go two days without looking at my texts, without looking at my emails,
I've got a helper Cameron Mack–a shout out to Cameron who is helping me out so much. He's helping me keep my budget, he’s helping me keep my accounts straight. That guy is great. Cameron Mack, if you ever need a recommendation for a job, or to be, I think…I just think you're a good man. Though you do have some things you need work on, haha. We'll talk about those another time. Anyway Cameron, keep up the good work. I really appreciate all the help you're given me.
Alright everybody, that's it. Believe me, most of the time, I am not this animated. I am lying in bed silently whispering in fear, cautiously. Oh, and eating has been a huge issue. I'm struggling with eating. My stomach is like a nasty sort of soup of turmoil. Every time I eat it just turns into this thunderous turmoil. It's very scary. But I'm still here, man. I'm still here and we're still living in a body.
I love you. Thank you. Thank you for being here. Thank you for caring, for listening. Okay, I don't know when the next one of these is going to happen, but hopefully this isn't the last. Bye.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi.
Living with severe ME/CFS, the thing that I get to practice more than ever these days is sitting quietly and doing nothing. Currently, I'm in search of people who would like to spend 20-30 minutes of "Quiet Time" with me. This is your opportunity to slow down, breathe, listen, ponder, reflect and experience the calming effects of quiet. Please sign up to sit with me in silence.
No Sign Up Necessary for Zoom (worldwide)
All are welcome. Sundays at 4 - 4:30 pm EST. Arrive on time. STARTS TOMORROW Sunday, Feb 25
Join Zoom Meetinghttps://us02web.zoom.us/j/87644318240Meeting ID: 876 4431 8240
Sign Ups Available for In-Person (Kent, Ohio)
Local to Kent only. Tuesdays, Thursdays and Saturdays at 4:00 pm. Find the complete instructions in the sign up link here. (https://calendly.com/halwalker/quiettime)
Quiet Time with Hal
Hi. I'm Hal. This is the Living in a Body podcast. I'm glad you're here. Thank you. Today's episode is completely improvised. For the first time ever, I'm just going for it.
So, here we go. It's episode 77. It's called Quiet Time with Hal... and it goes something like this.
This post is made possible by a half milligram of Ativan. I don't think I could do it without it. Ativan is a benzodiazepine, also known as Lorazepam. And I use it very conservatively, half milligram a week. I don't want to become addicted to it. And I don't want to build up tolerance to it. So I use it very conservatively.
It calms my nerves. It calms my fear of having a crash.
Yeah, fear is such a big part of this illness. I'm living in constant fear of it getting worse. Throughout the week, one of my mottos is "God, be my Ativan." God, calm me to the core. Slow me down. Calm me on a cellular level.
I find Ativan to be more fast acting though. And more... reliable... more reliable than God. But I'm working on it. "God, be my Ativan."
Today's episode is basically an advertisement for you to join me in my latest endeavor. It’s called “Quiet Time with Hal.” I hope by the end of listening to this, you are convinced to sign up.
"Quiet Time with Hal" is basically an opportunity for you and I to sit quietly together and experience all the healing benefits of quiet.
I came up with "Quiet Time with Hal" a couple of weeks ago. A couple of Quakers reached out to me and asked if they could come over and sit and have silent meeting for worship in my room with me. And I said, “yes, of course.”
And they showed up. Margi had flowers with her and brightened up my room. And we sat quietly for an extended period of time.
No one spoke. With the Quakers you can speak out of the silence, but no one spoke. We just listened. And it was so beautiful. I realized this is what I want every day.
I want people to come over to my house at four o'clock with no obligation for conversation and just sit quietly.
So I came up with this idea of "Quiet Time with Hal." And then I went over to calendarly.com and made a sign up calendar for people to come and sit quietly with me in my home.
And then I posted on Facebook and I was expecting... To be honest, I had high expectations. I was expecting people to come running. Like, I was thinking I should put seven days a week for sign up because there's going to be so many people.
It turns out that "Quiet Time with Hal" is not as attractive as I thought it was gonna be.
It was crickets.
Actually, within 10 minutes, Cameron signed up. (Thank you Cameron.) But I called Cameron and I said, "Cameron, leave your spot open for someone else. You and I can meditate whenever we want."
But I was kind of a little bit disappointed at the the extent of the crickets. I know people don't go to Facebook looking to sign up for something. You know, they “like” it and move on. In a way, "Quiet Time with Hal" is the opposite of scrolling on Facebook.
So.. what I'm offering is the eternal, the age old, the forever, real benefits of quiet... shared quiet.
The first time I ever discovered shared quiet was at Farm and Wilderness camps in Plymouth Vermont.
I graduated from college, went out to Mount Hood National Forest and worked as a trail maintenance and backcountry patrol person for the summer. Then I met this woman Ami, she was working there too. And we went on a six week bike tour around California. No credit card, no cell phone.
And then she went back to Germany where she was from and I connected with JP. He said, "Hal, in the spring, let's go to my uncle's mountain top cabin in Idaho. Elk River, Idaho.”
So JP and I drove out to Idaho, lived in this cabin with no electricity for a couple of months. We used a refrigerator with snow in it to refrigerate our food.
And then somewhere along the line, I got a summer job at Farm and Wilderness. It's these Quaker camps in Plymouth, Vermont. And I came home from Idaho and that early summer, I rode my bike with my friend Chris. We rode our bikes to Farm and Wilderness from Ohio.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Anyway, the point of the story is that at Farm and Wilderness, it was Tamarack Farm, a co-ed high school camp on an organic farm. There was something called fifth freedom. You had the freedom to go naked in the gardens and in and around the lake. This was an old camp. When I was there, it was the 50th anniversary. And that was 1989. It was a really well established Quaker camp in Vermont.
And every morning, the whole camp would come together and sit in silence in a big circle in the woods. And I just fell in love. I fell in love with shared quiet. I fell in love with shared speaking out of the silence. I knew I had come home.
I thought I was going to spend my life at Farm and Wilderness but I got distracted and did other things instead. But I loved that place.
In the mornings, we would have work projects. All the campers would go into work projects and in the afternoon was all creativity workshops. I actually taught a class in Navajo weaving. I learned Navajo weaving when I was working for a summer at ghost ranch in Abiquiu, New Mexico.
Anyway, we would sit in the woods and everyone just sit quietly and when the spirit moves, you could speak out of the silence. Well, I came back home and eventually ended up back in Kent. In 1995, I got a job with the Unitarians. So my Quaker days went on hold for 25 years.
But just this last summer. I was looking for something to do on Sunday mornings. I wanted to get free of all my baggage at the UU church. So I started attending the Quaker service and it's very small. You know, they're not packing it in over at the Quakers, or the Friends Meeting. They are not packing it in... even though they should be because it's one of the most peaceful places you'll find in Kent on Sunday morning.
And I went over there and I sat there. And all my years of arranging the music, running the show, running the orchestra, running the bell choir, running the choir... all that was put to rest. And I just sat there in my wheelchair, and I sat quietly with the friends, the Quakers.
And I felt like I was home, I felt like I could find God there.
And then, you know, after just a few couple of months of that, I started having these downturns, having these crashes and I got to where I wasn't well enough to go on Sunday morning.
And I reached out to the Kent Friends (Quakers) to let them know what was going on. And they reached back and offered to come sit with me in silence. So that's what happened last week, or a couple weeks ago.
And I decided I want that every day. I want people coming over to my house and sitting quietly with me. But then I went to Facebook and realized people were not as excited as I was.
You know, I admit, in my previous life, I wouldn't have had time to go sit with some guy. Some guy in his house for 20 minutes or a half hour. I was too busy. I was too driven. I was too driven. I was always too busy.
Now I'm not busy. I'm living with severe ME/CFS, mostly bed bound, in a lot of physical discomfort, a lot of fear, a lot of grief. But little by little, I'm adjusting to this way of life. And the way I'm doing that is by getting quiet.
I've put down Tik Tok, put down Instagram, essentially put down Facebook and put down YouTube. When people come over, we sit and we whisper or we pass a notepad back and forth to write.
I'm very fragile.
So, quiet time is the best thing for me to spend time with people. I have to be careful even of passionate talking. It's amazing. This illness is brutal.
But I'm adjusting. My sister keeps saying, "Hal, you're getting an A+ in the hard class." And I gotta say, I am.
Thanks to my 12 STEP program. It’s saving my life. Thanks to several different things. Like Mango. Mango is here full time right now caring for me.
So anyway, I hope you'll sign up for a "Quiet Time with Hal." If you're local, sign up in person. You get to choose between 20 or 30 minutes.
All the instructions are there at the calendarly.com link right here.
And if you're not local, join me on Zoom. I don't know how this one's gonna go. Four o'clock Eastern time on Sundays. We gather at four, we say hello, we bow to each other. We greet each other. We welcome each other to the silence.
And then we go on mute and we'll sit silently together for 20 minutes. Zoom is going to be just 20 minutes. I know you're busy.
Anyway, seriously, please consider this. Consider joining me.
It's going to be either in person Tuesdays Thursdays or Saturdays at four o'clock Eastern time in-person in my home. All the instructions are in the calendarly.com link. — or on Zoom on Sundays at four 4pm. Eastern time.
I think that may be all I have for you. But let's talk about what the benefits are.
First of all, you get to help a guy with chronic illness. And I get to help you. I feel like it's the one thing I have to offer you... is silence. We get to explore connecting through quiet.
And we’ll get to exchange a few words, a smile, some eye contact. But then we sit quietly and we just listen. And we get to soak in it. I have a very quiet room. It’s a quiet neighborhood.
Usually, right now there's a beautiful sun shining through the window. You don't have to bring anything. Don't bring flowers. And then we'll just sit silently together.
Have I sold you on it yet?
Reduce your cholesterol! I mean, I don't know if it'll actually will reduce your cholesterol but reduce your blood pressure. Slow your brain down. Our brains are too sped up. Mine is anyway.
I need every chance I can get to slow down. All right, this is my offer. I'm gonna let go of all expectations and trust that you will do the right thing.
Thank you so much. This was fun. Thanks to my sponsor, Ativan and my other sponsor, Jim.
Ah man.. what a life.
I miss you guys. That's the main thing. I miss human beings. I miss being out in the world. I miss the people that you see at the store, the Kent Natural Foods. I missed just the daily life of human contact. So that's what you'll be giving me.
All right.
And what I'll be giving you is just my quiet presence.
Thank you so much.
Enjoy living in that body of yours today. Believe me, it's not going to be around forever. I miss you. I love you. Sending you my very best wishes. See you next time. ❤️Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to Living in a Body. This is a very special episode today. Natalie Mead fromand I have exchanged a few letters (via email) and we’re publishing them today. Press PLAY above to listen to the podcast version of this episode. And click below to check out Natalie’s Substack. Enjoy.
Nat and Hal
Hi Natalie.
My name's Hal Walker. I read your recent note seeking collaborators on the topics of chronic illness and humor. Well, it just so happens that I’m living with severe ME/CFS and I used to be funny, so I’d love to connect. How ‘bout we write letters back and forth to get to know each other better? I’ll start.
It’s true. In my previous life, I was really funny. I could make the whole room break out laughing. In fact, my senior year in high school, I was voted "Best Personality." The weird thing about that is that in social settings, I was always afraid of people. I felt like I didn't know enough about "current events" to carry on a conversation. I was so scared of my own silence.
I still sometimes struggle with not knowing what to say, but I've discovered that I don't need to know anything about "current events" to connect with somebody. I just need to be myself. These days, I practice being vulnerable and honest. These days, I practice telling the truth. I hope that in our collaboration, we both feel free to tell the truth. I hope we can just relax and be ourselves through our writing. I'd really like that.
I love laughing. In my previous life, I laughed a lot. I had a really heartfelt baritone laugh that would sometimes make me fall over. But I don't laugh much these days. It actually hurts my lungs too much to laugh. Due to this nasty illness, the"previous life" that I’ve been referring to seems like a distant memory. You're meeting me in the middle of the most challenging time of my life. In fact, today was one of the most challenging days of my life. I'm very sick and I'm very scared. On a regular basis, I question how I’m gonna survive this illness. It's a brutal one and it just keeps getting more brutal. From what I hear, of all the illnesses, ME/CFS is one of the rougher ones. So I cry a lot. In fact, I'm crying right now as I write this.
Well, I'm sorry there wasn't much humor in this first letter, Natalie. Maybe the funny will come out later. I'm really glad to meet you and I look forward to getting to know you better.
Sincerely, Hal
Hi Hal,
First off, I'm sorry to hear you're having a tough day. I don't know you, but I do know that chronic illness is mostly terrifying and only a little bit funny, and I think your condition is objectively more terrifying than mine. So let me start by saying: Keep holding on! There will be days that are better than this one, days where you will smile or marvel or gently chuckle.
I actually don't think of myself as a funny person. I was the awkward nerd who was obsessed with marching band, not any sort of class clown. But when I was first hospitalized with chronic migraine disorder, at the age of 27, I found myself plunged headfirst into the chaos of both a sudden-onset disability and the American medical establishment. I saw only two ways to cope: cry about it, or find the humor in it. Five years later, I still do plenty of both.
I look forward to getting to know you more, especially because you've dispelled the need for me to feign knowledge of current events. I have enough stress in my life, so I make a point of not reading the news. I think I know who Donald Trump is, and I heard that he was considering running for president a few years ago? I wonder how that turned out??
When you feel well enough to write more, I'm curious to know more about ME/CFS and your life as a disabled person. Though we're both disabled, there's a broader spectrum of disability than most people realize. What is ME/CFS, in your own words, and how does it affect your life? What metaphors, if any, do you use when describing it to others? If you were to personify it, what would that person look like, do, and say?
Hang in there, and talk soon :)
<3 Natalie
Natalie!
I so appreciate your letter. I laughed out loud twice. You are funny. You're funny in a smart kind of way. I'm funny in a more crude kind of way... like, "did he really just say that?!" I'll try to restrain myself, but I gotta warn you that I use bad words when it comes to talking about my illness. Many times, the readers of my Substack have heard me refer to myalgic-ensephalo-f**n'-myelitis, also known as chronic-fk you-fatigue syndrome.
Now that we've gotten that out of the way, I'll let you know that I was the son of a Presbyterian minister who rarely cursed and never told a lie. I, on the other hand, began lying, cheating and stealing at a very young age. As the only boy with three sisters, I was the prince of the family, perfect in every way. I spent much of my life trying to please everyone while veiling a secret life that I showed no one. Where I lacked in moral aptitude, I made up for in raw talent.
I got hit by the sudden onset of ME/CFS in 1991. On Friday, I was a long distance runner and an avid cyclist. Then on Saturday, I couldn't run across the street without needing to lie down. For the first 30 years, it was mild. In the last 3 years, I've learned that ME/CFS is the meanest, nastiest teacher in the school and I'm in the hardest class. She never tells us the rules and she penalizes us whenever we break them. My lying, cheating and stealing days are behind me, but ME/CFS has me over her knee and she's punishing me with no mercy.
I'm already enjoying the conversation, Natalie. You seem cool. Tell me more.
H.
Hullo Hal,
You took my metaphor right out of my mouth! My chronic migraine disorder also feels like a persnickety school teacher. I've learned some of the class rules, but I’ve also learned that following the rules doesn't guarantee anything.
My experience with chronic migraine disorder is somewhat unique, or at least more rare, because mine was sudden-onset, much like your ME/CFS. Most people with chronic migraines start out with occasional migraine episodes that grow more frequent over time, but that wasn't my experience. My very first migraine lasted for 10 months, landed me in the hospital for 3 weeks, and disabled me from my job (I worked for Facebook at the time). Fast forward a few years and, voila! I'm chatting with you about chronic illness. But that's not such a bad outcome, now is it?
I'm wondering, does ME/CFS involve chronic pain? I don't know much about its symptoms, or even if everyone gets the same symptoms.
Also, wow...I wasn't even alive for most of 1991! :) That's a long time to deal with such a strict school teacher. On my worst days, I fear having multiple migraines a week for the rest of my life, and spending basically my entire adulthood in pain. I can't imagine making it 30+ years with chronic illness. How did you come to accept your lot in life? Do you feel like you've made peace with your condition, or are there still days when you rage against it?
<3 Natalie
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Good morning Natalie,
For the first 30 years, my illness was the ineffective substitute teacher who occasionally tried to exert her dominance over the class. For the most part though, I could get away with anything. I constantly pushed the boundaries of the illness and the consequences were never all that dire. Certainly, I spent mornings in bed and even days in bed, but usually, with another good 10 minutes flat on the floor, I could recover enough to go on doing what I wanted to do. I lived a very full life with mild to moderate symptoms.
Lying on my back with my arms and legs flush to the floor became a familiar posture for me. I remember many times lying in this position in the green rooms of concert venues. But when it was time for the show, I'd stand up in front of that microphone and the magic would happen. With seemingly no effort at all, I became radiant with big musical energy. No one could ever have guessed that minutes before, I was plastered to the ground . Thanks to a healthy dose of talent, a big passion to perform and an adequate storage of adrenaline, I was the most energized guy you'd ever meet living with ME/CFS. These days, it's a whole different story though. I'm almost fully bed bound. My main symptom is a ceaseless and crushing void of energy throughout my whole body.
To be honest, I'm hesitant to start talking too much about the reality of ME/CFS. There's so much darkness and hopelessness in the subject. Phrases like "the bottomless pit of suffering," "suicide is the number one killer" and "the lowest quality of life of all the major illnesses -- including end stage cancer" haunt me and terrify me. In the last three years and especially in the last three months, I've gotten first hand experience with these concepts and I'm scared for my life.
Today, my gut feels like a twisted cluster of chaos. My arms and legs are achingly weak and my feet are cold. The ringing in my ears is constant and loud. My breathing is weak and irregular. My heartbeat races with almost no exertion. I'm having more and more difficulty speaking, eating, walking and typing. In the last three months, I've experienced "crashes" on a more than weekly basis and each one has brought me to a deeper state of illness. I live much of my life in fear of the next crash.
But I'm not in pain and I've never had a migraine, much less a migraine that lasted for 10 months. I honor you, Natalie, for your story and your survival. It has occurred to me recently that I can be of service in the world just by staying alive. It's not the kind of grand vision that I've had for myself in the past, but this illness is changing me in so many ways. For one, it's teaching me to see myself as one among many, another child of God muddling through this human experience.
Thanks to this illness, I'm connecting with you now. I'm grateful for that and I look forward to hearing more of your story. Hey, let’s keep writing these letters. I’ve really enjoyed it. But as we’re coming to the end of this first exchange , I'm curious… Where do you find hope?
Hal
Hiya Hal,
Thanks for sharing some with me about ME/CFS. I know very little about it, so I am thankful to know a little bit more now, but I understand why it's a difficult topic for you.
Though I can often fool people into thinking I'm a normal/healthy person, as my migraines continue, I find it increasingly exhausting to do so. At this point, I've had multiple seasons of pain so severe that I want to kill myself. That sort of darkness leaves scars of shame and fear, and those scars often prevent me from connecting with people who I love and who love me, which leads to more shame and fear. It's such a vicious cycle. But I agree, I think people like us have a lot to give to the world simply by surviving and sharing our stories. That doesn't make it all worth it, but it does give us some small amount of purpose in our suffering.
It's funny you ask me about hope, because hope is something I rarely have in my day-to-day life. I'm a pragmatic person, and my disease has taught me to be rather pessimistic. But when I think about my main sources of hope, two things come to mind.
One is the hope of remission. Though Migraine is an incurable disease, I know of people who are chronic who have managed to improve their condition substantially. For someone like me, the chances of this happening are pretty slim, so this isn't a very strong or certain hope. What is perhaps more possible is learning to make peace with my pain, not letting it control my life so much. But I'd be lying if I told you I don't often dream of remission.
The second hope is a much stronger one, and I share it with you plainly because you asked me to write honestly: I pin all my hopes on the belief that there is a heaven. Having spent a good chunk of my life being sick, I need to know there’s a place other than this heating, warring planet full of grief and disease. I want to be made new and whole.
I'm really enjoying writing to you, Hal. I actually just passed up watching the Super Bowl with my husband and dogs to draft this letter, though that's not saying much as I am neither a huge football fan nor a huge Taylor Swift fan (I DO like Taylor Swift, just not as much as I like writing).
<3 Natalie
Hey,
I'm enjoying this as well. We should go for another round of letters after we put these into the world. I have a feeling there’s a lot more to say. By the way, I hear you’re from San Francisco! I’ve got a few friends out there that I’m dying to see. Maybe someday, we’ll get to meet in person. I hope so.
Sincerely, Hal
Thank you for reading, everybody. And don’t forget. Enjoy living in that body of yours. It won't be around forever. May as well take advantage of it while it’s here. Have a great week and see you next time. ❤️ Hal
Follow me on Instagram. (232k followers) Hang out with me on TikTok. (2.7M followers) Grow with me on YouTube. (75k subscribers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, reply to this email to connect one on one.
Thank you. H
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” Thank you for being here. I appreciate you. Listen to the podcast version of this episode be pressing PLAY above. Enjoy. When you’re done reading, please leave a comment. I love your comments. ❤️ Hal
A Whole New Hal
I'm trying to make sense of this new life -- this life of perpetual rest, this life of moving from one bed to the other, this life of chronic illness, physical limitation and spiritual contemplation. I'm interested to see where it all leads, but lately, as my symptoms have worsened, it's been easy to lose hope. God knows I don't want this to be the last chapter. I'm too attached to this world to let it go yet. There's still so much more living to do and I was just getting started.
My mom has been praying to get the old me back. She wants to glory once more in her multi-instrumentalist son that stood tall on stages doing amazing things in front of audiences of all ages. I have to admit that I'd do just about anything to get back there, but I have a feeling that God has different plans for me. My sense is that I have two options. I could forever long to return to the past or I could embrace, create and unravel a new me -- a whole new Hal.
This morning, the sun is shining brightly through the south facing window in my room. The new me is soaking in these sunbeams, content with their slow path across the bed. I'm trying to believe that this is enough for me today. In fact, it's more than enough. How blessed I am to be alive. God, please help me to remember that.
My Unitarian-Universalist colleague and friend, Rev. Steven Protzman doesn't get to savor these mid-winter blessings today. He doesn't get to soak in this February light. Steven died last Monday night. On January 29th, with almost no warning, his heart stopped beating and all his plans came to a sudden halt. If I could do it over again, when he came over last December to pick up that tone chime, I would have accepted his offer to sit and talk for a while. At the time, I probably had some pressing distraction pulling me away from an afternoon conversation. At the time, the familiar walls of fear and fatigue probably did their job to protect me from the risk of a human connection. At the time, neither of us new that two months later, Steven would be gone.
It occurs to me how often it's been the case that when people in my life die, I regret not having spent more time with them while I had the chance. There was Meita Marshall, John Langstaff and Maj Ragain, to name just a few. Now I add Steven Protzman to the list. He was a good man. Steven and I butted heads a few times, but I deeply appreciate the ministerial presence that he gave me when I needed it the most. I just didn't know it at the time.
With all this in mind, I think I'll put this writing down for a few minutes. The new me is gonna soak in some of this February sunshine like it's the most important thing in the room this morning.
These days, I aspire to slow down and do just one thing at a time. When I'm soaking in the sun, I'm just soaking in the sun. When I'm eating lunch, I'm just eating lunch. When I'm talking on the phone, I'm just talking on the phone. When I'm resting, the new me is just resting. Of course, this is easier said than done for a master multi-tasker like myself. The old Hal was a one-man-band, the musical king of killing three birds with one stone. Have you ever seen me with banakulas in each hand, a harmonica strapped around my neck and shakers tied to my feet? The old me in action was a multi-tasking site to behold. If you were there, you know what I'm talking about. If you weren't there, let me let you in on a little story about the old Hal that I'm thinking my mom's probably never heard before.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
I got an acting job in West Liberty, Ohio playing the role of Casey Jones with the Mad River Theatre Works in a traveling play for kids called, "The Legend of Casey Jones." (See The Legend) For several months, on Monday nights, I'd drive down to Logan County to be an actor for the week and then come home on Friday nights to be with Hallie for the weekend. My solo residence was an apartment attached to the funeral home halfway between West Liberty and Bellefontaine. It was a big yellow ranch style home and there were literally dead people living in the storage room right next to me. It was the early 2000's, I didn't yet have a cell phone and I had no laptop to keep me occupied. Hallie's mom and I had split up and I hadn't t yet found lasting sobriety in the rooms of 12 step recovery. While playing the role of Casey Jones, I was literally living the life of Casey Jones -- late night drives on dark county roads, burning the candle at both ends and pushing the reality of a mild case of chronic fatigue syndrome to the limit. I was tired all the time and always looking for somewhere to lie down, but I was on fire with life and I couldn't stand to sit still for much more than a minute.
I remember arriving at my new yellow home on that Spring evening in 2004. My first stop was the grocery store where I picked up my sustenance for the week. I recall the satisfaction of finding carrot walnut muffins in the bakery and fresh ground organic coffee in the aisles. In those days, that was my primary nutritional concern -- coffee and muffins. I can't remember what other foods you might have found in my grocery cart that night, but I definitely remember the carrot walnut muffins and the fresh ground coffee. Right now, I can almost feel the buzz of that coffee's aroma as I drove the week's groceries back to the funeral home.
The second stop was the public library. My mission there was to find a yellow pages directory that would guide me to the nearest strip club. Mind you, I don't say this with pride. In fact, later, I may regret letting you in on this juicy little detail, but there's an important point being illustrated here. The old me couldn't stand to be alone with myself for a single night. On the very first night in a new town, the old me found my way to the back corner of a free library in search of ten dollar lap dances, all in a desperate attempt to fill that God sized empty hole in me. From this current bed bound place of sitting alone quietly for days on end, the new me sends my deepest compassion to that lovable, hungry, bewildered young man.
On the second night in town, after a full day of rehearsal, I got in the car and made the hour and ten minute trek to the middle of nowhere, Troy, Ohio. With the anticipation of slipping dollar bills into women's bikini straps, I was willing to go to any length. During the drive, I alternated between memorizing lines from the play and practicing music. I would steer the car with my knee while playing an English concertina with my hands and blowing a harmonica that was strapped around my neck. I can't remember all the details of all those trips to Troy, but on some nights, I'm certain there was marijuana involved in the picture. In a clouded high of piecing melodies together while navigating country roads, I was a musical madman on wheels.
I gotta say that I'm grateful that I made it through alive. Casey Jones, however, wasn't so lucky. Working overtime and driving too fast, he died as a young man in a train wreck in Vaughan, Mississippi. The accident was his fault. I, on the other hand, got to live to tell the story. It’s been 20 full bonus years since that time and now, as I'm dropped into this new chapter, I'm learning to appreciate a whole new version of myself. I guess we could call this version Hal 3.0.
Just to be clear, it hasn’t been an easy transition into this new life of limitation. I totally understand my mom's grief and I grieve with her. I find myself grieving at some point every day. But today, I'm willing to look for the good in this greatest challenge of my life. I'm willing to look for the awe in simple things. More and more, I'm becoming aware of the old patterns in me that stunted my growth, kept me grasping for more and separated me from others. Today, I'll practice being satisfied with what is, with all its imperfection, all its discomfort, all its mystery and all its wonder. Today, thanks to this illness, I'm grateful to be growing into a whole new Hal. I hope you’ll come visit sometime.
Thank you so much for reading. Thank you for listening. Remember… enjoy living in that body of yours. It’s not gonna be around forever. Enjoy whatever health you got and I’ll try to do the same. I’m reminded of that song, “You don’t know what you’ve got until it’s gone.” That’s how it is with me, for sure. Soak it up today. I love you. See you next time. Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Two years ago, on January 15, I launched “Living in a Body.” Thank you for coming along on this not-so-easy journey. Today, I’d like to bring back one of my favorites — episode 16 from May of 2022. After you listen to this one, I encourage you to go back and listen to some of the episodes that you may have missed. There’s 76 of them! (ARCHIVE) In the comments, let me know what your favorites are. Thanks again. Enjoy. Hal
The CD Mystery Returns
My mom refers to herself as a seeker. I guess that’s what I am, too. At the age of 57, you’d hope that I would’ve done a little more finding by now, but here I am — seeking, yearning, doubting, avoiding, questioning, struggling and longing. I can’t remember exactly how she said it, but a friend of mine recently suggested that God is in the longing. I wish I knew what she meant by that. I guess I could ask her.
Several years ago, I dropped off my Prius at the Main Street Auto Center in Kent for some repairs. A few days later, as expected, I picked up the car, paid the bill and drove away. When I turned on the car stereo, I was greeted with music that I’d never heard before. In my CD player was a mysterious homemade CD with nothing but some handwritten text on it — “Jamie* 4-21-2018.” Within minutes of hearing the music, I started crying. Driving down the road with the stereo turned up, filled with emotion, tears running down my face, I was bawling.
Even though my dad was a Presbyterian minister, we didn’t talk about God much in the house. When it came to faith, we were a cynical bunch. My dad said a prayer before every family dinner but never before breakfast or lunch. We never prayed in restaurants and as a family, we were generally opposed to any inkling of public piety. We were raised to question. The ultimate goal in life was to be a thinker. My dad’s brain was so full of books and thinking that somewhere along the way, I decided to leave the historical theologizing to him and I, instead, went desperately in search of a girlfriend. Church was my duty and my obligation. Every Sunday morning, I wore my Sunday best, but my time in the pew was spent dreaming about pinball — and girlfriends. (see Stolen Quarters)
The music I heard on that CD broke through the analytical part of my brain. The trance pop melodies sung by soulful female voices shook my doubt and made me grieve for a simpler faith. The power drums and the huge bass broke me down from my high tower of intellect. Though my resistance to Christian praise music is deep rooted, these songs were calling me to the altar. Track after track revealed the pain of my having spent years trying to figure out who God is. The combination of the song lyrics and the live congregational singing brought forth my longing for religious community. As I drove, I put my heart and my hands in the air in an act of surrender. I remember driving along Wyoga Lake Rd. in Stow in tears and being on the verge of a religious experience — desperately wanting to let go but still holding on. I kept that CD in my car for six weeks. Every time I pressed play, I would almost instantly start weeping.
“In the glory of your presence,I find rest for my soul.In the depths of your Love,I find peace — makes me whole.I love, I love, I love your presence 2xI love, I love, I love you, Jesus.”
“I Love Your Presence” by Darren and Jessie Clarke
In my twelve step program, we often talk about doing the “next right action.” At some point, it occurred to me that the next right action was to return to the Main Street Auto Center and give the disc back to the rightful owner. After I made my own copy, I approached the shop with the Jamie CD in hand. I remember feeling shy and a little bit embarrassed. I had a feeling that the return of this CD would be a bit outside of the norm for these grease covered mechanics. But I knew I was doing the right thing.
I walked in, waited in line and then explained what happened. I apologized that it had taken so long for me to return. As I handed the CD to the shop owner, he made it very clear, “Our mechanics would never put a CD in the stereo of a customer’s car. That’s against our policy. It’s not our CD. Our guys wouldn’t do that.” He put the disc back in my hand and I returned to my car dumbfounded. “What? How could this be?” Suddenly, my understanding of the world turned upside down. “Then how the heck did this CD get in my car? Who put it there? This is crazy!” To this day, I have no idea where that CD came from.
Months later, I made one more attempt to figure it out. I saw Hallie’s high school friend Jamie walking in downtown Kent. We hadn’t really spoken in years, but I stopped her on the street and asked her to sit down for the whole story. She laughed and thanked me for asking, but she assured me that the Jamie CD was not hers. I’m still bewildered.
When I started writing this post, I went in search of the disc. I’m glad to say that I found it still living in the CD player of my car. (I rarely drive these days.) With the help of Spotify and Shazam, I’ve learned that the songs on the CD are mostly tracks from a live worship album called “Here is Love.” The singers, Jenn Johnson, Kim Walker-Smith and Leah Mari are part of the worship team at Bethel Church in Redding, California. This morning, as I traveled a slow wheelchair journey back and forth from my kitchen to the grill on my front porch, I listened to the songs on Spotify. They gave me some comfort. As I soaked in the music, I felt a kind of sad, quiet contentment. It was as though I was making peace with the grief and the loss in my body and in my home. My thinking slowed way down and I teared up a couple times.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Recently, more than ever, I’ve been brought to me knees. Rendered ever more helpless, it seems that the spiritual solution is gonna my best option. Over and over again, I learn that the things I’ve tried in the past don’t solve the problem. 20 million views on a TikTok video won’t bring me closer to God. Acquiring more musical instruments won't offer me peace and contentment. And finding a new girlfriend isn’t gonna fix my life problem. They say it’s an inside job and no matter the circumstances, one day at a time, right action leads to right thinking which leads to…. who knows what — the great unfolding?
I’m grateful to be on this journey — this bonus life of mine. Often, I wish that the universe would lighten up a little bit on me, but I know it’s my job to lighten up. I’m interested in the idea of holding this illness lightly and just going along for the ride. The gifts are so abundant and they just keep coming. I mean that CD, for instance… where the heck did that thing come from? The whole story reminds me to keep my eyes wide open for the miracle. You never know where it’s gonna show up.
My friend said that God is in the longing. And there’s no doubt that I’m longing. I’m longing to take a walk down by the river. I’m longing for community. I’m longing for better health. I’m longing for healing in all my relations. I’m longing for peace to breathe through my whole body. I’m longing for freedom from my old ways of thinking. I’m longing to trust the unfolding and to love what is.
Thank you for being here. Thank you for reading and for listening. I appreciate you. In fact, I am you. Thank you, highest power, for all the gifts of this moment. I love you.
“If you want it, come and get it… for crying out loud.This love that he has given to you was never in doubt.Let go of your heart. Let go of your head and feel it now.”
- “I Love Your Presence”by Darren and Jessie Clarke
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome. For the podcast version of this episode, press PLAY above. Enjoy. H
In Case I Go Missing
The hashtag is #MillionsMissing.
You know me. I don't go missing easily, but I can see how this illness makes it happen whether you want it to or not. There are a few things that I'd like to get off my chest in case I become one of the many. Please don't forget.
Let’s raise a million for the millions.
My plan for this post is to make it raw and unedited. There will be very little wordsmithing. I'll write it five or ten minutes at a time over the course of the next couple weeks. My intention is to face the perfectionist in me and make this an stress-free sharing that will not produce any further decline in my health. I'm thinking of this as me writing a letter to you. It starts like this, Dear Love, Dear Friend… Dear Mom.
I remember when I used to write letters as a young man. From college, I wrote long handwritten letters to my parents. From the tops of trees and mountain peaks, I wrote letters illustrated with colored pencils to my college friends. In Greyhound bus rides. I wrote brotherly letters to my sisters (Remember Greyhound bus rides? -- Believe it or not, they used to have a smoking section in the back of the bus. I can't imagine that today, but it's true. I took several cross country trips on Greyhound buses in the 80's. I remember stepping to the back for a smoke. There was such a strong sense of community back there. It was the kind of joyous comraderie that happens when people gather together to kill themselves slowly. We knew we were killing ourselves, but we were ok with it and we were loving each other’s company. But, I digress.) The point I was trying to make is that when I used to write letters, there was no editing. It was one shot -- from beginning to end -- stream of consciousness. That's what I'm aiming for here -- like I'm hand writing a personal letter to you.
Did you know that I used to be a smoker? I was the one or two, rarely three-a-day, roll-your-own variety of cigarette smoker. My preference was a special blend of Drum tobacco and the golden Three Castles tobacco. Then I'd roll it up in a very fine, glueless Club paper. Those cigarettes were intense. I can still recall the almost sickening high they gave me. I'd roll one after dinner or after a coffee and muffin at the diner. When I lived on the second floor of my parents house, I'd smoke out the window. I was so afraid of my parents finding out that I smoked. There were a lot of things that I hid from my parents back then, but I'm sure they knew anyway. I'm grateful that I'm no longer sneaking around and hiding parts of myself from people. These days, I'm an open book. I've got nothing to hide.
For a few moments this afternoon, I found myself whistling in the kitchen. After a full morning and early afternoon belly down in bed, there I was, standing at the counter top paring an apple. I thought, "What the hell are you doing, Hal!? You better do this fast and sit back down in that wheelchair. This is dangerous behavior!" Imagine that. Whistling and paring an apple is dangerous behavior. It's crazy. It's called myalgic ensephalo-f****n’-myelitis.
My whole life these days is about preventing another crash. All I've got to do is get through today without a crash and my day will have been a success. Since the New Year, I've had several devastating crashes. Each one has brought me to a deeper level of illness. I live my life with a constant underlying fear of the next crash. Every time I get used to the new normal, ME/CFS throws another one at me. It seems I still haven't learned the rules. To be honest, I'm not even sure that there are rules.
For months now, I've been saying, "C'mon God. Ease up on me." I find a few moments of ease here and there, but for the most part, I'm still waiting.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
I just dozed off for a few minutes as I was lying on my second bed and I had a dream. I dreamed that my two sisters and I were careening out of control down a steep and winding mountain road. Johanna was driving while KK was fiddling around with the controls on the steering wheel. While we were veering off toward the edges of the cliff, Johanna was fighting to get KK to stop. Then I woke up.
This dream feels a little bit like my life right now except for the fact that ME/CFS is driving the car. There is no steering wheel and I'm the only passenger. My sisters are watching from distant look out towers using text messages and phone calls to do whatever they can do to get the car under control.
It seems that in 1991, with the sudden onset of ME/CFS, God was giving me a clear message to slow down. I was unable to hear that message. In many ways, I did slow down. I was always looking for a place to lie down and I discovered the 10 minute naps that became a staple in my life. But underlying everything, there was a sense of urgency to get more done and to do all the things that came into my mind that needed to get done. In case you haven’t noticed, I’m a bit of a mad musician. I have lots of big ideas.
As a young man, I once visited a monastery. I remember the feeling of fear that I felt with the silence there and the slowness there. It was a beautiful setting, but it just seemed so scary and depressing to me. I was afraid to sit quietly with myself. I was afraid to go slow and afraid to be small. Today, this is my only choice… but not really.
I have an urge to be more honest in telling the stories of my life. The trouble is that I'm scared. I'm scared that you'll judge me. You see, for much of my life, I lived two lives -- the life that I showed everyone and the hidden life that I kept all to myself. The stories from the hidden life play such an important role in who I am today. I think it's important for me to tell them. And heck... what have I got to lose. I'm 57, mostly bed bound and living the cleanest, most honest life I've ever lived. My writing coach encourages me to write the stories for myself and then later determine whether or not to put them into the world. I think she's right.
It's January 26th today and it's my dad's birthday. He's no longer living but I think about him alot. I talk to him all the time. Sometimes he holds me while I cry.
Well anyway. I hope you're well. I hope this letter wasn’t too much of a downer for you. Just so you know, Hallie and I exchange voice memos every night that begin, “What I love about my life is…” It’s one of the highlights of my day. But I'd love to hear more about YOU. Feel free to drop me a letter anytime. I hope you'll give me all the juicy details. I’m hungry to connect. Or just leave a comment right here.
Thank you so much for being here. Thank you for reading. Thank you for listening. And as always, don't forget. Enjoy living in that body of yours. It’s not gonna be around forever.
Love, Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. It’s with a mix of sadness, surrender, humility and gratitude that I hand the narration of the Living in a Body Podcast over to my friend Cameron Mack. I think he does a very fine job. Sometimes he sounds a little bit like me. I’m not well enough to do it myself. I hope to be back someday. Please pray for me and press PLAY above. ❤️ Hal
The Year in Review - Part One
Happy New Year, everybody.
In case there's been any doubt lately, Monday evening's crash confirms that I have entered the category of severe ME-CFS. With a distressing level of weakness, I'm still able to walk to the bathroom and across the hall to my second bed, but I'm fully housebound and mostly bed bound. One time a day in the evening, I take a trip downstairs to the kitchen, but it feels a bit treacherous. I'm spending most of the hours of every day in bed feeling quite fragile and quite ill. In desperate hopes of avoiding any further crashes, I lie here trying to calm this shattered nervous system of mine. I'm writing this post 5 minutes at a time with extended rests in between. Eating has become very difficult and I speak only in a whisper. When I have visitors, we communicate by passing my Remarkable e-pad back and forth. I regularly fear that I'm coming to the end of my life, but one day at a time, I keep surviving. There's much more to say about living in this week's version of my body, but I'll leave it for another time.
This afternoon, As I was lying here feeling sick and staring at the "Healing is Possible" painting on my wall, it occurred to me what an amazing year I had in 2023. How could I have ever complained? Compared to my current state, last year feels like a bed of roses. From hanging on the beach at the family reunion to visiting family and friends on an east coast adventure, 2023 was a special year full of good living. Of course, if I could do it all over again, I'd spend 12 months sitting quietly on the porch breathing in the Love of God and calming my nervous system. But alas, 2023 is in the history books.
In order to remind myself of some of the highlights of the year, I opened up the photos app on my phone and I scrolled back to Jan 1. I'd like to share some of those highlights with you now .
The Engagement
The year began on December 31 when my daughter's boyfriend, Andy Donnolly called me out of the blue on New Years Eve day to let me know that at midnight, he was intending to ask Hallie to marry him. He was calling to ask for my blessing. I was stunned and delighted. I gave Andy my full blessing and felt the glow of this once in a lifetime moment. I'll never forget it.
Hallie and Andy will be married at an outdoor ceremony in the Cuyahoga Valley on June 15. I'm praying that I'll be well enough to attend the wedding in order to walk my beautiful daughter down the aisle.
A Yoga Class
My very first yoga class was a Tuesday night Asana class with Margot Milcetich in the basement of the UU church of Kent. I used to enjoy taking that class and then heading downtown for a beer and a burrito at Taco Tanto's.
Years later, one of the most memorable yoga classes was an Ashtanga class I took in Columbus, Ohio while I was down there for a school job. After class, the instructor came over to me and said, "You have a beautiful practice." I walked out of that class feeling on top of the world.
In February, I was looking for somewhere to go on Sunday mornings and I found a new yoga studio in Kent that was offering a Sunday morning class called "Chillax." I showed up and it felt good to break out the mat and stretch out on the floor in the familiar peaceful environment of a yoga class. After a few classes, I soon found out that even attending the Chillax class was too strenuos for me, so I stopped going. But for a minute there, I was re-living the good old days when I was seeking out yoga studios all over Ohio.
Tik Tok
2023 was another year of Melba, my three wheel electric scooter. As you may know, she's the fastest thing on the bike trail and has provided me with so much outdoor enjoyment since my health took this nasty turn.
This Spring, I was riding Melba into town on West Main Street and a driver pulled up beside me and called out, "Hey! Aren't you that guy from TikTok?!" Yep. I'm that guy. After a good handful of viral moments, in 2023, I reached 2.6 million followers and I got to experience several public sitings at random places around town.
I spent the first part of the year honing my system for creating multi-screen multi-track compositions using Ableton Live, Final Cut Pro and my iPhone. My daily creative video ventures were a highlight of my "partly housebound" life of early 2023.
In May, I moved from the "Creator Fund" to the "Creativity Program Beta" on TikTok. This new program paid creators better per view for videos that were over a minute long. After years of creating 15-30 second videos, on the day I joined the Creativity Program, I revamped my whole approach. It was a risk but it paid off big time. In the first month of creating minute long videos, I gained 80 million views and TikTok paid me a whole bunch of money.
In October, I let go of TikTok in another desperate attempt to calm my oversensitive nervous system. I miss the creativity. I miss the income. I miss the wild excitement of viral videos. But these days, I live vicariously through Hallie who's blowing up on TikTok as we speak.
The Roadtrip
At the end of March, Hallie was producing a cabaret show at 54 Below in Manhattan and I couldn't bear to miss it. With just enough wellness to make the trip seem feasible, I hired Cameron Mack as my driver and assistant. We turned the back of my Toyota Prius into a bed, loaded the luggage and the wheelchair onto a rack on the back and we planned for a stress-free roadtrip to New York City. When we found our spots in the fully loaded car, Cameron pushed the start button to discover that the battery was dead. Our spirits were briefly deflated, but within about 10 minutes, my mom arrived to save the day. Cameron and I pulled out, stopped for gas and headed east.
We stayed in a cool sub-level airbnb just a few blocks away from Hallie's place. On the first morning, Hallie and I planned to meet on the sidewalk halfway between the two addresses. Under brisk blue March skies, I enjoyed wheeling through Herbert Von King park in my blue excalibur electric wheelchair. As I wheeled down Marcy Ave, there she was, Hallie Walker in the flesh -- all four foot 11 inches of her New York City power and glory.
We had no particular plans for the morning, so I, the guy with moderately severe ME/CFS, suggested that we climb to the rooftop of her six story Bedford-Stuyvesant apartment building. You know me. That's just the kind of guy I am. There's no way I was gonna let this illness get in the way of experiencing a stunning view of Manhattan with my sunshine, Hallie.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
As we began the slow climb up the stairs, Hallie expressed some concern, "Are you sure you're ok, Daddy." I appreciated her concern and her understanding of this illness. "Yes. I'm ok, Hallie." I've been living with ME/CFS for 32 years. I understand pacing. I know what I can handle. I mean, in 2019, I became a competitive table tennis player. For many years, I directed multiple ensembles at the UU Church of Kent. I grew a vegetable garden at my home and planted an asparagus garden at my mom's. When the groundhogs started digging under the fence, I dug a trench all the way around the garden and buried some wire mesh to keep them out. For many years, I drove hours to spend full days teaching at elementary schools. Even though I was always looking for a place to lie down, I was the most energetic guy with ME/CFS that you will ever meet. Sure, I would sometimes crash, but I always bounced back.
We made it to the rooftop with no great consequences. We went to see a Broadway show. Cameron and I played RAV drums on the rocks overlooking the Long Island sound. We visited one of my best friends, my college roommate Jerry who lives in the woods in Connecticut. We spent a couple days with my friend Peggy who has been living with severe ME/CFS for the last 30 years. And we visited my childhood friend, Georg outside of Rochester New York. Somewhere in Connecticut, I had a pretty bad crash which made the last part of the trip quite difficult. But we made it home safely. I eventually bounced back. I always bounce back.
Go Congress
One of the great enjoyments of my life has been playing the ancient Chinese game of Go. Played on a 19 x 19 grid board with black and white stones, go is a beautifully complex game of strategy and shape, life and death, balance and power and intense competition. I learned the game as a child on a cardboard version of the game and I've been playing it ever since.
Amazingly, the American Go Association held its annual Go Congress at Kent State University last summer and I was there. Game after game, I got to sit silently with 300 other Go players as we each pursued to surround more territory than our opponent. It truly a wonderful experience until day 5 when I woke up with a bad cold. This cold produced the first of a long series of crashes that brought me to my current state of health.
I'm sorry to say that I've had to give up playing my beloved game of Go for now. The fierce competitive nature of this game of war has proven too intense for my delicate nervous system.
Thank you for being here. Thank you for reading. Thank you for listening. I hope you’ll say hello in the comments. What was the highlight of your 2023? I’d love to get to know you better. Have a great Saturday. Enjoy living in that body of yours. Ok? See you next time. ❤️ Hal
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” Special welcome to all the new subscribers! I hope you’ll introduce yourself in the comments. I’d love to get to know you better. Press PLAY above to hear the podcast version of this episode. (4 min)
The Scent of Freshly Fallen Snow
We had a beautiful snowfall in Northeast Ohio this week. Yesterday, there were still five or six inches of pure white fluff covering everything in sight. In this strange age of global warming, it seemed almost surprising to get so much snow this early in the season. It feels kinda like the good old days of winter in Ohio. I've been reminded that there's nothing quite like the scent of freshly fallen snow in December. I love it.
Several times a day, I wheel myself to the back door to smell the winter air. I open the sliding glass door and I poke my head out just enough to take a deep breath in through my nose. I'd forgotten how good snow smells, especially when it's freshly fallen. It's so clean and crisp and full of memories. I've been pausing there in the cold for a few minutes as I practice appreciating my life. And I smile. It makes me happy that this has become such an important part of my day. It feels like I'm finally getting my priorities straight.
Whenever you get the chance, I encourage you to breathe in some freshly fallen snow. Just open up the door and let the winter air waft through your senses. I've learned that the fresher the fall, the more potent the scent. It starts to fade after a couple days. If you've got no snow, find something else to smell. Maybe it'll be the subtle scent of sunshine in December or the distant neighbor's bonfire or the traffic filled vibrant life of a city street. Whatever it is, I hope you'll poke your head outside just long enough to breathe it all in. Remember to pause and feel it in your body… and then smile. And I hope you’ll come back and tell me all about it. I'm dying to know.
A friend reminded me this morning that it’s the small things that are actually the big things. I got to play a game of “Splendor” with my nephew this afternoon. My sister, Caroline’s in town from Colorado and I got to feel her hand on my back while I cried in my bed this week. For the first time in three years, I’ve got a real Christmas tree in my house. Big thanks to Cameron Mack for helping to make that happen. Next week, I get to welcome my daughter's fiancé into my home for the very first time.
Whether these are big things or little things, I’m doing my best to breathe it all in and feel the fullness of my life through some very difficult times. I like to imagine that my dad’s watching over all of this and crying grown man tears with me right now.
My wish for you during this sacred season of dark and light is that you find a few moments of peace as you pause to breathe in the fresh scent of December. I’m sending you the warmest of wishes as we close up another year. Thank you so much for being here. Thank you for your kind attention. And don't forget. Enjoy living in that body of yours. It’s not gonna be around forever. I’ll try to do the same. See you next time. ❤️ Hal
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. If you look forward to reading this publication, I encourage you to become a paid subscriber. If you’re already a paid subscriber, thank you so much! Please click PLAY above to hear the podcast version of this episode.
Watching You from the Window
I've never been the kind of guy that sits and stares out the window after lunch. I was always too busy moving on to the next thing. But after lunch yesterday, while my friend Marion was cleaning up the kitchen, I wheeled into the back room and I sat there and I stared out the window. The whole backyard was glowing with a deep autumn afternoon sun and the years of hard work that I put into that yard flashed before my eyes. I wish I could say that I smiled in those few minutes, but I didn't. Instead, I shook my head with a sad disbelief about the reality of my situation. I couldn't believe that at age 57, I'm a guy who sits in a wheelchair after lunch and stares out the window. After Marion left, I sat there and I wept. I felt deeply the loss of the man that I used to be.
I used to run up and down the stairs, two steps at a time. For some reason, I was always in a hurry. I don't know what the big hurry was, but I was in one. I was always running just a few minutes behind, trying to catch up. These days, I have nothing on my calendar and nowhere in particular that I need to be. I ride an electric chair lift up and down the stairs and I'm no longer in a hurry.
I remember back in the day getting into my car and realizing that I'd left the keys upstairs. I thought nothing of bounding back into the house, through the kitchen and up the steps to the second floor. In my room, I'd look around 'till I found the keys and then I'd bound back down those steps skipping one or two at a time on my way back to the car. Then I'd back out my narrow driveway and zip off to a rehearsal at the church or a 12 step meeting in Cleveland or a school job in Columbus. I was a man on the move in my Toyota Prius, forever traveling the streets of Kent and the highways of Ohio. I liked it that way. These days, a trip to the first floor is about as much traveling as I can handle. My body is so fragile. My nerves are like thin glass that's ready to break and crash all over the floor.
In this ME/CFS-ridden body, when I venture up or down the steps, there's no bounding happening anymore. Instead, I'm slightly hunched in a chair lift that has only one speed, super slow. Typically, I sit with my legs crossed. For the little bit of comfort that it provides, I like to rub my neck or scratch my head or shake my leg while I ride . I don't mind how slowly it goes. I'm grateful for the smooth, quiet ride along the wall. That chair lift was a good purchase.
As I begin the slow ride up, I often catch myself in the mirror that hangs above the fireplace on the living room wall. Seeing my own reflection in the distance, I sometimes chuckle in disbelief. Sometimes, I cry. Sometimes, I smile. Sometimes, I curse under my breath. I've got a lot of feelings about how this illness has slowed me down so much. These days, I move slow enough that I get to feel all those feelings. I no longer have the option to run.
The radical slowing down of my physical body at the prime age of 57 didn't come as a total surprise. I've been living with a much milder version of this illness since 1991. In a sense, I had 30 years to prepare for this reality. Certainly, I'd heard the stories and I wondered about my future, but there's no way to prepare for ME/CFS when it hits this hard. The recent intensification of my symptoms happened fast and without my consent. Over the course of a few weeks, I got initiated into the "severe" or at least the "practically severe" category. I'm now a guy that needs a wheelchair to move around the kitchen. I'm now a guy that spends a significant percentage of his day in a darkened room, belly down in bed. I'm now a guy who sits and stares out the window after lunch.
Being forced to slow down in the physical realm has been a grueling process. Slowing down in the creative realm is a whole nother side of the story. Probably to my own detriment, I fight against it everyday. The passionate flow of ideas running through my head has slowed very little. My artistic drive keeps pushing me to create. My passion for the creative process is hungrier than ever. Even as the neurological symptoms of ME/CFS become more severe, I'm not ready to be done yet. I was just getting started. As an artist, I was just coming into my own.
In my home, I have a beautiful office that sits quiet while I battle ME/CFS across the hall. From my bed, I miss the chair and the desk where so much creativity has happened over the years. Yesterday, as the late afternoon sun filled the west facing window, I ventured over to my desk, and I opened up a hard drive called "silver." Immediately, the hundreds of files in folders reminded me of the awesome quantity of work that I produced during the pandemic years. In that time, my laptop and I were almost literally on fire. Regularly, I'd have Ableton Live, Final Cut Pro and a host of other powerful apps fired up and running simultaneously on my machine. With daily collaborations on TikTok, weekly virtual choirs for church, a Sunday night YouTube sing-a-long, an online school residency and a two times a week interview show, I call 2020 my golden year. Firing on all cylinders, I was a steam engine of new technology and production, and I didn't know when to stop. The crashes of 2021 didn’t give me a choice in the matter. ME/CFS began its ruthless take down.
After I watched a couple video files from the drive, my first thought was an overwhelming concern. I thought, “How can I possibly compile all this work to show the world what I’ve done? How can I pull all this creative magic from the pandemic and make sure everyone knows that it actually happened? I can't just allow these creations to be lost forever in this silver-cased hard drive. There's too much good stuff here.” After a few minutes of dreaming, the symptoms in my body took over and forced me back into bed. It’s abundantly clear to me that I just can’t do it like I used to do it anymore.
I'm not sure what's gonna happen to those files on that hard drive. They may never again see the light of day. Maybe one video at a time, I'll present it all on YouTube. Maybe my talented friend Elanor will sweep in and do the work for me. Or maybe the historians will take care of it when 2020 enters the history books. They’ll say, “You should’a seen this guy, Hal Walker. He was a force to be reckoned with. Here’s his song, ‘Low Key Gliding,’ the song that defined TikTok 2020."
Or maybe I'll listen to the voice of my recovery that assures me that all things of the world are fleeting. No amount of work that I produce or accolades that I receive will ever satisfy the hunger that lives in me. My highest power asks, "What if this illness is a gift, Hal?" I'm willing to consider that. And “What does this slowing down have to teach you, my brother?" Well, it feels kinda like a crash course in humility. Somehow, I think I’m learning about patience, gratitude and acceptance. And "Why is sitting and staring out the window not enough for you?" Probably cause I’m human. I don't know. Maybe it will be someday. It's just taking some mighty painful gettin’ used to. I had such great other plans for myself.
From my window, I can see Melba out there in the garage waiting for me. She's all charged up and ready to go. Melba's my speedy three wheel electric scooter that's given me so much joy in the last couple years. She’s the fastest thing on the bike trail and I’ve been the one riding in the passenger seat. I’m sorry to say that lately, I haven't been well enough to ride her down to the river. I miss it so much. But winter’s coming and I have a feeling that Melba's been out there praying for me. I imagine she’s worried.
Don't worry, Melba. God's in charge. I'll be watching you from the window.
Thank you so much for reading. I hope you’ll say “hello” in the comments. I’d love to get to know you better. As always, enjoy living in that body of yours. Enjoy every minute. I’ll try to do the same. Keep smiling. See you next time. ❤️ Hal
Follow me on Instagram. (232k followers) Hang out with me on TikTok. (2.6M followers) Grow with me on YouTube. (73k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. For the podcast version of “Living in a Body,” please click the PLAY button above. (5 min) Also, please introduce yourself in the comments. I’d love to know more about you. Thanks, Hal
Smile
I had one of the hardest days of my life today. Over the course of the last week, my symptoms have become more severe on an almost daily basis. It’s been terrifying. But guess what? I’ve been smiling throughout it all. Sure, I’ve done more than my share of crying, panicking and staring off into the distance with a stunned look of shock. But honestly, all day today, I’ve been lying in bed smiling.
You see, I’m trying to outsmart this illness. I figure if my brain thinks I’m calm and happy, then ME/CFS will ease up on the symptoms. So far, it hasn’t been working, but I’m doing it anyway. It’s the funnest little project that I could come up with under seemingly impossible circumstances.
Just to be clear, I’m not talking about an ear to ear, showing the teeth smile. It’s just a subtle perk of the cheeks, a quiet lift of the ears, an easy curve of the lips and a calming thought in the brain. Sometimes, the smile even turns into a full blown laugh. I mean, it’s funny. Here I am going through the most challenging days of my life, moving steadily in the direction of severe ME/CFS and I’m smiling. And I’m laughing.
I guess it feels like the better of my two options. I’m well aware that suicide is the number one killer of patients living with severe ME/CFS. The illness doesn’t kill you, but the bottomless pit of suffering makes you kill yourself. And just so you know, ending my own life is not an option for me, so instead, I smile and I think thoughts like, “Thank you, God.” In fact, I say that one alot. I’ve been repeating it all day in my mind. “Thank you, God” and “I trust you, God.” I don’t even believe in God but I talk to God all day long. I say, “God, I can’t wait to see how you work this one out.” I’m hoping that one day God will help me make sense of all this suffering. Maybe then it will all have been worth it.
Just to be clear. While I’m doing all this smiling, I’m literally on the edge of a total breakdown of my being. The symptoms are intense and unrelenting. My heartbeat is fucked. My breathing is screwed. My ears sound like a never ending siren. My body is buzzing all over with a weird, prickly weakness that I would never be able to describe accurately to a poet, much less a doctor.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
So anyway, I have an invitation for you. I’m planning on spending the next seven days smiling. It’s gonna be that quiet inner smile that I was just talking about. I’m hoping that you’ll consider joining me for a full week of smiling on the inside. Here’s my thinking… Whenever it occurs to you, just think of your old friend Hal writhing in his bed, smiling and laughing. Then put on a little smile of your own and maybe even let out a little chuckle. Let’s outsmart this illness together. It’ll be fun. What d’ya say?
I’m so grateful for you and there are so many things I want to tell you. As I lie in bed smiling, I can’t stop coming up with thoughts that I want to share with you. At times, I wish it would stop. I wish I could just smile without all the big ideas. I guess I’ve got a whole week ahead to practice. But again, I’d like to invite you to spend the week smiling with me. I can’t wait to think about your smile. Maybe we can change the whole world. Maybe with our smiles, we can outsmart all the terrible illnesses and all the awful atrocities of the world. I know it sounds naive, but maybe… just as an experiment. What do we have to lose? Are you with me? I hope so.
I’m so grateful that you’re in my life. Even though I don’t know many of you, I appreciate that you care enough to read my words. ME/CFS has taken so much away from me in the last couple years, but it hasn’t yet taken my words. If it ever does, it sure can’t take away my smile.
Let’s check back again next week to see how it went. Have a great week. Try smiling through the hard stuff and see what happens. I love you. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” Today’s episode is a conversation between Elanor Nadorff and me. Elanor is making a documentary film about my life. Please click the PLAY button above to hear the podcast version of this publication.
The Movie
HalHi, I'm Hal, and this is the Living in a Body podcast. Thanks so much for being here.
Today is episode 70, and it's a conversation between myself and my friend Elanor Nadorff.
Hi, Elanor.
ElanorHi everyone.
HalHey! I have gotten the wonderful pleasure, the wonderful blessing and pleasure of spending the last several days with Elanor.
We're making a movie.
ElanorWe already made a movie.
HalWe made a movie.
ElanorWe shot all of it.
HalWe shot all of it. Now Elanor's got to do the hard work of piecing it all together.
ElanorYeah. It'll be fun.
HalElanor, what's the movie going to be called?
ElanorThe movie is called Living in a Body.
HalYeah, Living in a Body.
ElanorSo Hal, do you want to tell them just what we've been doing for the past five days?
HalSure.
We'll do a video shoot for 12 minutes and then I'll rest for 12 minutes, and then we do another video shoot, and we keep going to different parts of the house. We keep coming up with different conversations to have. You know, we keep sharing, we're collaborating on this, so Elanor will have an idea of something she'd like to ask me or I'll have an idea of something I'd like to say. She's been filming me at the kitchen table, in the living room, in my bedroom.
We went to the...
ElanorOutside.
HalOutside, at the grocery store, at the Kent Natural Foods Co-op. It's been fun. I gotta be honest, I'm dreading for when she leaves.
ElanorI'm dreading leaving too a little bit. I feel like I forgot what my life was like before I came here. I've been in this like black hole, and I don't know how to get out.
HalCould we come up with a different metaphor than black hole?
ElanorA black hole is not… I traverse to a different galaxy.
HalYeah, a different galaxy. I kind of feel that way too. It makes a big difference to have a young, talented, vibrant artist around… filmmaker.
I mean, that's what I was joking last week. I need a live-in filmmaker so I can constantly, my mind can always be… I have, there are no shortage of ideas, let's put it that way, and there are many more films to be made. I just need a live-in filmmaker.
ElanorIt helps when the live-in filmmaker does the dishes sometimes too.
HalAnd makes the salads.
ElanorSo I guess I wanted to tell them a little bit of the background of how we came to work together.
HalYeah, that'd be great.
ElanorSo my dad is named Georg, and he's Hal's childhood best friend, and Hal actually wrote a Substack about their relationship I think called “Hal and George.”
Hal”Hal and Georg.”
ElanorSo I'm Georg's daughter and I'm two or three years younger than your daughter.
HalYeah.
ElanorI'm 23, and I've known Hal for my whole life. We saw each other probably less than once a year growing up because my grandparents lived in Ohio so we would stop by Hal's to visit on the way to visit my grandparents.
But, I mean, I was obviously a little kid and we didn't get to spend much time together. I mean, I don't think we've ever spent time together, just me and you, in my whole life before I came here. So, it's been really fun to get to know you now that I'm an adult and we can kind of, you know, have an adult friendship.
HalRight.
ElanorAnd it's been nice to get to know you. Our families are always around, so it's like we don't get to have one-on-one conversations.
HalOne thing I really appreciate about you is I often eat my meals by my, I usually almost always eat my meals by myself. And you have, every time I have a meal, even though you're not necessarily eating, you come right up to the table and you sit down and you start looking me right in the eyes.
ElanorI do stare at you while you're eating.
HalYou're inviting conversation, you're inviting connection, and I appreciate the eye contact. You're not someone who is timid with your eye contact. You're sort of like wanting to engage.
ElanorYou know I know you and you're a chill guy and you always have been even before this onset of your illness becoming more severe, but I mean, I don't want to put words in your mouth, but I feel like with your illness you don't have a big capacity for talking all the time. You know, it kind of comes and goes, so when we're eating together, you know, if I was eating with someone else, I might be having this pressure to make conversation, to be friendly, but I don't feel that with you. And I know it's not what you want all the time, but I want you to know that, you know, I'm there with you in that moment.
HalI appreciate it.
ElanorAnd I also like that we can sit in comfortable silence together. I want to make that clear that the silence is very comfortable.
HalYeah, I like that too. That's excellent.
So what else is the precursor to the film?
ElanorSo the way the film came about is Hal, I live in upstate New York with my parents, and Hal was going to visit Hallie in New York City in March or April of this year, and he stopped by my parents' house on the way back, and you were kind of in rough shape, I would say.
HalI was in pretty rough shape at that time, yeah.
ElanorAnd I'm sure the traveling didn't help. But I got to see you, and as soon as Hal came to my house, my dad said, “Oh my God, Elanor has been making YouTube videos. You have to see them.”
And I was like, “why are you telling him about my videos?”
Like, I don't want, you know, the attention on me. So you were interested in seeing my videos. So you and my parents watched my YouTube videos on our huge TV, and I left the room because I don't like watching my own stuff. And I mean, I didn't really expect you to have a reaction to them.
HalBut I had a strong reaction.
ElanorBut you had a very strong reaction. So why don't you say what your reaction was?
HalWell, I don't remember what we watched. I just remember having a very strong reaction, like, wow, I didn't know this is what I was going to be watching. This is cool. I love this. I love the… like this woman is obviously a talented filmmaker and it wasn't just, you know, when you think of YouTube, I don't know what comes to your mind, but in my mind, really what Elanor is doing is some of the finest YouTube, like that's the really the art, the art of YouTube is what you're doing.
I watch mostly Go tutorials and, uh, I don't watch a whole lot of the vlogging. But your stuff is so much more than vlogging, you're telling a story and you're creating a film and you guys gotta go check them out, they're excellent.
ElanorYeah, my goal for my videos, I wouldn't call them vlogs either, but I guess that's the closest word to describe them, but my goal is to make a film about myself. I make my YouTube videos in the same way I'm making this film about Hal except I'm the subject and it's about something specific about my life. So I would describe them like a film.
But yeah, definitely not common, and I don't really watch any videos like that on YouTube. I watch like… extreme camping videos, music videos, cooking videos, weird stuff.
HalWell, we got home, well while I was there Cameron was my driver and Elanor recorded Cameron and I playing the Rav drums, and they have a beautiful house, and we sat in the living room and made some music, and she recorded it, and the next video that came out on Elanor's channel, I heard my music, and it was so exciting “Hey that's me, I hear that.”
ElanorYeah I used that recording of Hal at the end of my next video, and I love that part of the video, and I actually used a picture of you in the part where the drums play, a picture of you singing at my parents' wedding. But yeah, that sequence of that film makes me cry because of your voice, and it's of Hal singing a hymn.
HalOh yeah. What were we singing, “Come Thou Fount?”
ElanorYeah.
HalOh right. So then what happened? How did we come up with this idea to make this movie?
ElanorSo I was hiding out in my room because I was kind of embarrassed, and you came up to my room upstairs, my bedroom, before you were going to go to bed and you said, “I just love your films and I would love for you to make a film about me.”
And I said all my ideas for the film about you, I think there on the spot. And you were like, what the hell? Like I could just tell you were like, I don't even know what she just said.
HalI don't remember that part.
ElanorBecause I just summed up the main ideas of the film. Because I've known you for so long. I know your family. I'm familiar with your life, I think, in a way that you can't be if I didn't know that and have that deep connection with you.
HalWell, then several months passed, and I think at one point I got a text from you or something saying, “Hal, I'm ready to move forward on this. Can I come to your house and stay for a few days and make this movie happen?”
ElanorYeah, over the summer, you know, I wasn't sure what kind of shape Hal was in, so my original idea was to use your recordings of your Substack to kind of make a script of the film and use your podcast as kind of a voiceover and then film stuff to make the film. So I had done that over the summer. I read all of your… listened and read to all of your essays and picked the best parts or the parts that I found the most compelling and assembled them into a script.
“Script” in loose quotes. I think the script is 30 pages long.
HalWow. But then you got here and the whole plan changed.
ElanorSo when I got here I realized, I would say you're kind of in rough shape but you have, I underestimated the strength of your creative spirit. I mean you were and are so just like ready to do it and had a lot of ideas and wanted to be on camera and talk to the camera. I wasn't expecting that.
HalYeah, when you showed up, I was sitting on the front porch, hunched over, very ill and very weak, and I've had several rough days, but we're doing this 12 minutes at a time, 12 minutes of rest. I have a passion to tell my story and I have a passion for the creative spirit, and when the creative spirit moves, there's not much that can hold me back. But I've definitely been held back. I mean, imagine if I wasn't sick, this whole thing wouldn't be happening.
ElanorYeah.
HalYou know, you were just earlier tonight saying this content, this life of being a content creator is kind of an illness, you said, or a disease.
ElanorYeah, I just said that as I was setting up my camera to film what we're saying right now for my YouTube channel.
HalDo you really believe that or was that just a passing thought?
ElanorNo, I do believe that.
HalYou said, why can't we just live in anonymity?
ElanorYeah, I mean, I just think it's different when you're a musician because you're a performer and you want to be in front of the audience. I don't want to be in front of an audience.
I mean, the filmmakers in the 70s weren't, didn’t have phones to film stuff on and then post it to everyone to see. That’s not how it worked until ten years ago.
HalYeah this is a new thing, the the life of a content creator.
ElanorYeah, I mean, I really take issue with the word content. For me specifically, I don't, I'm not making content, I'm making art. I'm not making something that's trying to sell you something or to just be consumed and discarded.
HalNo, you're not.
ElanorSo… the speed of our consumption is very concerning to me, and sort of making making yourself be the center of your art I think is kind of a perverse instinct which I am afflicted with as are you.
HalThank you for that.
Well then Elanor showed up and the magic started happening. We started having all these magical moments and the thing has unfolded very beautifully. It has unfolded very beautifully over the course of about five days, and all these little cameo appearances. We went to Giant Eagle and we ran into my friend Saunus, and Elanor recorded Saunus and I singing “This Little Light of Mine” in harmony in a Giant Eagle aisle.
ElanorYeah, in the pet food aisle.
HalAnd I was in my electric, you know, grocery store cart and then, you know, at the perfect moment my mom showed up at the house and my mom and I sang “Come Thou Fount of Every Blessing” together.
ElanorYeah, that was beautiful.
You know, I know Hal is someone who creates community wherever he goes and creates it even from his bedroom. I mean, you are involved in so many groups still and it's just, you can't even conceptualize it until you're around him. I mean, I've never met anyone like that. And I was surprised, I know that you, you're so invested in your community here in Kent and so many people know you. But I mean, the amount of people who just come into your house, they just walk in the door, and then it's like, you visit with them and they ask how you're doing and you leave and they leave. I mean, that's a rare thing, and it was really beautiful to watch.
So Hal, one question I wanted to ask you is, how do you feel about putting this film out into the world?
HalI am so excited. I feel like, especially last night, you said, Hal, this is going to be really good. And when you said that, I was like, gosh, if Elanor thinks it's going to be good, it's probably going to be good. So I'm excited.
And today we came up with this idea. We only came up with this just several hours ago, but what if at the same time that the film is released called Living in a Body, I also release a book called Living in a Body, which is a compilation of all these episodes of Living in a Body. So I'm excited about the whole concept of Living in a Body as a film and as a book.
So I'm, but I'm very, I mean I've been very ill this morning. I was, I sound all lively and full of vitality but this morning I was plastered to the bed thinking, wanting to die and having a hard time breathing, and it's just so intense the way this illness swells, and those swells, it's very scary. I get very afraid, and right now, you know, it's more in the distance because I'm thinking about something else, but it's definitely looming… anyway.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
ElanorWe had this idea of this book along with the film and also an album of the soundtrack of the film, whatever songs I end up using in the film.
HalAll my old songs, unreleased songs. I've got many, many songs that never got released on the internet. They're all on self-burned CDs over the years that I sold, but they're not available on the internet, so we might…
ElanorA lot of those are going to end up, I mean, you would burn CDs for my parents and give them to us and we would listen to them on the drive to Ohio, so a lot of those songs are like ancient memories for me that I grew up listening to, and I have my own personal favorites of your songs. So a lot of those are definitely going to end up in the film, and some that are totally new to me that I love.
HalSo to answer your question, I'm really excited. I'm wondering where the local viewing should happen, whether it be at the Kent stage or maybe the UU Church.
ElanorThe local viewing is going to be the party of the century. It's going to be the Kent Bicentennial the re-up.
HalHopefully I'll be there… I'll be able to attend. Hopefully I'll be well enough to attend.
ElanorWhat were your highs and lows during filming?
HalHmm, what were my highs and lows?
I loved that the day of making music or I loved that one day we… I was playing the handpan on the front porch and I was really grooving on it, and then one day we were on the back porch, and I was playing some instruments and… like I got out my concertina and my harmonica, and I hadn't played that combination in a long time That was one of the highs, and telling my addiction story. We started with that. I think that was the first.
ElanorYeah, that was the first.
HalElanor showed up and said, Hal, there are some questions I have off the record. You talk about being an addict in your Substack, but what are you actually talking about, and then I told her my whole addiction story, which we're not going to get into right now.
ElanorNo, but some clarification on that is in the film.
HalYeah, I clarified some things about that.
What was the low point? You said what was the low point? The low point was probably at one point I was feeling so unwell that I wanted to tell the story. I had this story in mind I wanted to tell, but I was so physically unwell that I didn't feel like I could tell it. That was painful. But I think eventually it got told somehow.
ElanorYeah, you fought through a lot of those low points.
HalThe low point also was, I mean, yesterday I had one of the worst days of my life. It was very, I was very ill all day, unrelenting illness. Were we taking the day off yesterday or did we record a lot yesterday?
ElanorI mean, you always say, like, I got to take it easy and then we end up filming stuff. But I think a lot of the low points in the film are from yesterday.
HalYeah. Some of the crying scenes.
ElanorYeah. So what was it like to work with me as a director? If you could sum it up.
HalIt was fun… It was fun. You asked such good questions. I trust you. I felt like I could be honest. Having you there is so much easier than me telling the story without you there. Yeah, and I think you and I are on the same, similar wavelength. Like we have a similar level of intelligence and a similar level of interest in words.
ElanorYeah, and creative things.
HalAnd creative things. So I think there's been a nice flow between us.
ElanorI think we also have a similar, like I would describe myself as shy, but I can be quite outgoing, but I'm not super talkative, I kind of choose when I want to talk and when I don’t want to talk, and I feel like you’re like that too.
HalYou’re right
ElanorSo it’s comfortable for us to be around each other.
I wanted to say what it was like for me to work with Hal as a subject and I just wanted to say that, you know, Hal obviously is a performer, but I feel like a lot of people who just know you from TikTok maybe haven't seen your public speaking abilities, you singing your own songs that you've written, some other aspects of you being a performer, and just all those qualities really translate into how you are on camera.
You're great on camera. You're super grounded and poised and you're really good at speaking eloquently. You have such a beautiful speaking voice. You don't stutter. You can be kind of thinking of what you're trying to say, but be still really eloquent at the same time. So I didn't have to do a lot of coaching you of like, say this differently or let's redo that. We didn't do any of that. So that made my job a lot easier.
HalIt happened very organically, and it happened very magically, and I didn't know what to expect when Elanor showed up, but the stories just started flowing, and the camera got turned on, and we had several nice setups in the house. I've got some portable lights that we moved around, and I can't wait for you guys to see it.
ElanorYeah, that's the other thing I wanted to say is, you know, Hal's a filmmaker too. I mean, you've been making your own stuff for like over a decade now. So he has awesome stuff here. And I mean, there's one part that I filmed where you're actually setting up the lights for your own interview, which I love. So yeah, getting to put our heads together on that was great.
Okay, so last question. What do you hope people take away from the film?
HalOne thing I don't hope they take away is that I have a tragic life. Like there are times in the darker moments of the film where there's a certain amount of tragedy to this story.
ElanorYeah, there is.
HalAnd I don't want people to go away feeling like it's tragic, but I really love your idea for the ending. I won't tell people that, but I love your idea for the ending that is very hopeful, full of beauty, and I can't wait to see that.
What I hope people get away is they… you know I guess I'll just say that this is my story, and it's a true story and it is a human story, and there are lots of feelings in this story, so I hope you have feelings and I hope you see some of your own story in this story.
ElanorOne of my views of the film is about how our lives can be taken away from us, and in your case, it's your illness that takes away so much of what you want to do with your life. But I think it's kind of a universal thing that everyone experiences at some point. You know, people have tragic events or addiction or they're living in a war-torn country. I mean all kinds of things that can take away years of someone's life, so the question of how do you cope with that I think is what this film ruminates on, and I think that people will be able to see themselves in your story because of that.
HalYou know, one other thing I'll add is I have some fear because I, when a camera is, I come alive with a camera, you know, my face comes alive, my eyes come alive, my voice comes alive, and I can, I can present as a totally healthy person. But what I also hope to get across in this film is the seriousness of this illness, ME-CFS, and what a deeply debilitating illness it is. And I'm afraid that we won't get that because, you know, put a camera on me and suddenly I look just like a normal guy.
ElanorYeah, I think that'll be, I do think we have some moments where you just couldn't put it on for the camera, so that is there, but I think that'll be a challenge in the edit for sure, and I want to do justice to what you're going through right now.
HalSo Elanor is leaving tomorrow. She's going back to her home in upstate New York, and I just want to say, Elanor, it has been a wonderful blessing to have you here. Thank you so much for this project. This has brought a lot of light to my life and I can't wait to watch it continue to unfold.
ElanorWell, I have loved getting to know you better and becoming friends. I think we're lifelong friends.
HalYay. Me too.
ElanorWhich is great, and I am so excited to come back and visit. And the other thing I wanted to say is how thankful I am to you for trusting me to do this with you. You know, my art is dependent on other people. You know, I'm dependent on having a subject. I couldn't… I can't just create this by myself. So, I mean, you're the kind of subject that filmmakers dream about in so many ways. So I just feel so grateful that our paths crossed, and I also feel grateful for my father for having this lifelong friendship with you and our families being friends and maintaining that connection through good times and bad over the past 50 years.
HalYeah, I used to call George on the telephone, the rotary telephone, 673-5015 is the first number that comes to mind. That might not be it, but then his mom would answer and I'd say, “Hello, may I speak with Georg? Georg, can you go out and play?”
We lived right next door to each other. It was a beautiful friendship for a few years there. Go listen to Hal and George. It's a good episode, way back several months ago.
ElanorYeah, that's a great episode.
HalAll right, Elanor, we better wrap it up.
ElanorLet's wrap it up.
HalEverybody, go out there and live in your body. Go live in that body of yours. Don't forget that you're alive in a body. Enjoy it. Enjoy it and connect with each other. Say prayers for each other. Love each other. Alright?
ElanorBye.
HalBye!
Follow me on Instagram. (234k followers) Hang out with me on TikTok. (2.6M followers) Grow with me on YouTube. (74k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” The daughter of my best friend from childhood (see Georg and Hal) is here visiting. Elanor is a documentary film maker and we’re collaborating on a film about my life. I’ve really enjoyed having her here. We’re having a great time. Today’s episode is a conversation between us. PleASE Click the PLAY button above to hear the podcast version of this publication.
Hal and Elanor, Part One
HalHi, everybody. I'm Hal. This is the “Living in a Body” podcast. And this is episode 69. So I am here with Elanor Nadorff and we're going to have a little conversation.
ElanorYes, we are. I'm really happy to be here with you, Hal.
Hal Yay. Cool.
ElanorSo, Hal, what have you been thinking about lately?
HalWell, good question. Thanks for asking.
I've been thinking about a lot. I lay in my bed and I have all these ideas about what I want to say. And all these titles of episodes come up in my brain and lines that I want to add to a podcast. And then I go to my computer or my laptop and I'm overwhelmed with symptoms and I've been unable to write lately. So I want to talk about some of these ideas today.
I'll just say that in the last two weeks I've had a devastating downturn of symptoms and today was the most challenging day of my life.
ElanorCould you talk a little bit more about what was challenging about it and what your symptoms are?
HalSure, geez, it's so hard to describe.
Loud ringing in my ears, aching legs, weakness in my breathing, panting, pins and needles in my lungs. Just overall cold and clammy and very weak.
ElanorSo do you feel like your symptoms are heightened when you're going to do something, when you're sitting at your laptop? Is that what you're trying to say?
HalWhat I'm trying to say is I have all these ideas… I've written 68 episodes and my pattern is to work all week long on it and to edit and to revise and wordcraft and put hours of work into these ideas. And now when I open up my laptop with all these symptoms, I get overwhelmed with my own expectations. I get overwhelmed with wanting to make it perfect, and I’m having a hard time putting these ideas together. I mean I’m so overwhelmed with symptoms. The combination of being overwhelmed with symptoms and my own expectations, my high expectations, has been kind of paralyzing.
Elanor Yeah. When you're overwhelmed like that, do you have something or someone in your mind that you're trying to please?
HalGood question. Thanks for asking.
I'm the only one I'm trying to please. I'm trying to please myself and I like things to be really excellent.
Elanor I understand.
I do the same thing. I mean, of course, you know, I don't have the illness that you have, but I am an artist and I am constantly overwhelmed and paralyzed to do my filmmaking or writing or whatever it may be. And it's really, really hard. I understand.
HalSo there's one thought I want to talk about that I've been having and it's this kind of heroic version of surviving this illness. Like I have this idea I've been given this great challenge and sometimes during the day I'll play around with the thought I love this challenge. I'll play around with the thought I love this challenge because it's making me grow in unimaginable ways and I can lead the way. I can lead the way. I can shine the light ahead for all those people following behind, living with this illness. I can be an example of someone who survives and creates a beautiful life. It's this kind of heroic idea that the hero's journey, I've been given this awesome challenge and I like when I'm in the float tank or something I'll think, I love this challenge… like keep it coming, God. Keep the challenge coming and I can but then the reality is. Ask me what the reality is.
ElanorWhat is the reality?
HalThe reality is I'm just a little kid. I'm just a little boy, a sensitive little boy that I don't think I can handle this. It's too intense. It's too much. It's so, it's so severe. And I know it could get even more severe. That's what I'm terrified of.
But, oh, the other reality is there's no one. I'm all alone in my room. There's no, I'm not leading a pack of people. I'm all alone in my room surviving this. And you know, once a week I put out a Substack and maybe inspire a few people or tell my story, but there's nothing heroic about this. This is my life that's disappearing in front of me. And I am struggling to make it a life. And I've got tons of fear, tons of grief.
Next question…
ElanorDo you think if you were leading a pack of people, as you say, that would make it easier for you or harder?
HalI think it would be… I've often thought I could teach a class in living with chronic illness, living with severe chronic illness. Mine is becoming more severe. It's more like moderately severe, but I could lead a class. And in fact, one of my episodes that I've thought about writing is the tools for survival, because I have a lot of tools.
That's the crazy thing about this illness. I'm doing everything right. Like I am, my diet is immaculate. My thinking is immaculate. My grief process is immaculate. Whatever that means. My self care, like I am just like, I am doing so much self care, but the illness keeps getting worse.
ElanorYeah.
HalBut the self care helps me survive.. and I cry a lot.
Elanor is here to do a documentary about me and I warned her ahead of time that, Elanor, I cry a lot.
ElanorAnd I said, that's okay, Hal.
HalYes.
What was another thought I've been having?
Oh yeah, the I'm sorry.
ElanorYeah.
HalAsk me that question.
ElanorRemind me what it is. I'm sorry.
HalA lot of times when I tell people my story…
ElanorOh, yeah, I remember.
Hal When I tell people my story, they say, oh, I'm so sorry, Hal.
ElanorHal, can I ask you something?
HalSure.
ElanorDid I say that to you when I saw you earlier?
HalNo, you didn't.
ElanorI don't think I did.
HalNo, I don't think you did.
ElanorBecause, well, I'll finish what you're going to say and then I'll say what I think about it.
HalWell, um, Like this is my one life and I don't want sympathy. I want inspiration. I want like, I don't find like, if you say I'm sorry, that means my life is to be something sorry about. And I should feel sorry. And I do feel very sorry.
One of the things I often say to myself when I'm crying is I'm so sorry, Hal. I say, I love you so much. I'm so sorry. I'm so sorry.
That was kind of forced a little bit. But it's like I am just weeping and saying, I love you so much, Hal. I love you. I'm so sorry. It's so hard. So it's okay for me to say it to myself.
ElanorYeah.
HalBut what I prefer is some sort of like, dude, go get this. Change your thinking now. Go get this. This is the only moment you have. This is not a moment to feel sorry about. This is a moment to live a beautiful life. And that's the training that my brain needs because I very easily go to how terrible this is.
ElanorYeah, I totally agree with you and I guess I haven't thought about it enough to say that, what you just said explicitly, but when I think about the film that we're making together, I think if I just felt sorry for you, I wouldn't want to make this film because that's not, you know, you're the hero of the film and you have such a vibrant life and you still have such a vibrant life and such a vibrant mind.
And, you know, that doesn't go away because of your illness. It changes. Of course, your life has changed so much, but you're still you.
HalMy ability to create is seriously altered. And that's one of the most painful things, because I'm a non-stop creative. I just want to be creating. And the fact that I can't spend all week sitting up in my bed, wordcrafting, is a painful new reality that I'm facing.
The fact that I can't sit at the piano and write a song is a painful new reality. I mean I just got a concertina for about a week there, I was learning and then I had a crash and I'm no longer strong enough to sit and play the concertina.
So all this loss. Oh, that's the one thing in the heroic version of my life. I think, uh, dude, give me limitations. Give me more limitations. Just keep throwing the limitations at me and watch me beat… watch me live within the limitations, live extravagantly within the limitations.
But that's all b**t. I mean, the reality is I'm laying in my bed crying most of the time.
ElanorYeah.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
HalThis has been fun, Elanor. Thanks. We've got just a couple more minutes, then we're going to wrap it up.
ElanorOkay.
HalThis is much easier than me talking to myself.
I tried this last week, just walking up to a microphone and talking my ideas. It's a whole different experience.
ElanorYeah, I wouldn't be able to do that.
Well, I think that kind of ties into what you're saying about your limitations now, is that, you know, I do want to acknowledge, of course, that it's devastating how much you've lost, like you said, just now about even your day to day stuff that you can't do that you could do last week. But at the same time, you know, your limitations give way to new things. And what we're doing right now is something new that maybe we wouldn't be doing if I had come last week.
HalRight. Good point. Yeah.
Who knows what's possible? God has a plan.
That's what my sponsor keeps telling me. I don't know what it means. But God has a plan and it's a beautiful plan. It might mean that I die, but it's still a beautiful plan.
ElanorYeah.
HalAnd you have... We all eventually die. Oh, that's the other one thing I wanted to talk. I'll wrap up with this. They call people living with ME/CFS the millions missing.
ElanorYeah.
HalAnd I find it so difficult to go missing. And I'm almost unwilling to go missing because I have such a, such an ego, such a sense of self that I'm attached to. And, but the reality is in the end, we all go missing. A couple of generations, we all go missing. And I'm just going missing a little bit sooner than I wanted to go missing. And I really do feel like a part of me is going missing. I mean, I'm not out in the world. I'm not... I'm missing at the elementary schools where I should be. I'm missing at my church service every Sunday where I used to be. And little by little I'm becoming one of the millions missing. It's very scary.
ElanorYeah, it is scary.
I mean, I also think you've already created such a huge legacy for yourself, more than most people ever do in a whole lifetime. Just with how much you've given to your community, you know, that stays with people forever. And how much you've documented online, that's going to be there forever. And also I think about your daughter, you know, you, there's a part of you in her, and she's a musician and she's doing her own thing now. And a lot of people don't have that.
HalYeah, you're right. That's one of the big blessings in my life. Hi, Hallie.
Elanor, this has been so fun. I've enjoyed this conversation. We did it fast and we're done.
ElanorWe're done. We should do it again.
HalNow I'm going to play a game of Go.
Thanks for being here.
ElanorThanks for having me.
Hal
Have a good day, everybody.
By the way, enjoy living in that body of yours. You know, who knows how long it's going to be around. And, uh, yeah, we've got today and I will try to enjoy some of it myself, even with the pins and needles in my lungs.
S**t.
Love you guys.
ElanorBye.
HalLet's hope that got recorded.
Follow me on Instagram. (235k followers) Hang out with me on TikTok. (2.6M followers) Grow with me on YouTube. (73k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to Living in a Body. I hope you’ll introduce yourself in the comments. I’d love to know who’s out there. Press the PLAY button above to hear the podcast version of this publication. (10 minutes) Thank you!
Easy
"Easy?"
That's the simple question that my meditation teacher greeted me with as I opened my eyes after my first 10 minute experience of Transcendental Meditation. I responded, "Yes, it was easy." She said, "Well good. Then you're meditating correctly."
In case you haven't heard, recently I've been practicing Transcendental Meditation. It's called TM for short. A few weeks ago, in an act of reaching out for some brotherly love, I called up my friend Chris Martin of Coldplay. I shared with him again some of the details of my continuing struggle with chronic illness. In our brief conversation, Chris jumped right into helping mode. He let me know that Transcendental Meditation had changed his life and that if I were interested, he'd arrange for a teacher to come to my house for four days in a row to show me how to do it. Chris spoke about the vastness of the inner life that's possible even when you're stuck in bed all day. I have a feeling that Chris Martin has never been stuck in bed all day for days on end, but I believe him anyway. I'm interested in the inner life and I was open to his suggestion.
The next day I got a call from Chris' meditation teacher, Bob Roth who hooked me up with a teacher in Canton named Zanna. Just as Chris had said, she came to my house for four days in a row to pass on the instruction. Zanna gave me my own personal mantra, she performed a simple ceremony in my living room and she taught me this very specific technique for meditation. Zanna has been teaching TM for 40 years and I so appreciated her kind presence and her clear instruction. For the last two weeks, I've been practicing it twice a day, once in the morning and once in the late afternoon. I like it. It's easy.
In fact, one of the things I like most about TM is how easy it is. It was easy to learn and it's easy to practice. It turns out that one of the main factors in determining if you're meditating correctly is whether or not it's easy. If it's easy, you're probably doing it right. There's very little trying involved. They say don't try to concentrate, don't try to reach for some specific outcome and don't try to stop thinking. The practice is just a relaxed and easy repetition of the mantra. I like the part of the instruction that tells me just to "take it as it comes."
As I've been meditating, it's been helpful for me to keep referring to the simple question, "Is it Easy?" The reminder seems to relax my whole being. My body smiles and says, "Oh yeah. This is supposed to be easy. Where am I trying too hard?" It's a good reminder that whatever wild adventures are going on in this busy brain of mine, it's just as it should be. Nothing needs to change. I just keep repeating the mantra. I hold it tenderly as if it were an easy friend. Then over and over again, I find myself in some far off realm of the thinking world. But with no effort at all, I simply return to the mantra. In a life that at times seems incredibly difficult, I love how easy this meditation practice is.
It makes me think that I could ask this question in other areas of my life. “Is it easy?” They say if it's easy, I’m doing it right. Does that mean that if it's hard, I'm doing it wrong? Maybe so. At least for today, I'm willing to go along with that conjecture. It's an interesting one. Where am I trying too hard? Where can I ease up on the effort? What am I fighting? And what would happen if I just take it as it comes. Maybe my life is a whole lot easier than I’ve been telling everyone it is.
Episode 67 was called "The Hard Class." It was my impassioned cry to let the world know how hard my life is. Somehow, I find comfort in letting you in on the struggle. Just to remind you, I'm living in a body stricken with a nasty version of myalgic ensephalo-f****n’-myelitis. At 57, the last two years have been the most challenging years of my life. I'm dealing with profound discomfort, frightening limitation and zero prognosis. Certainly, this is not the life that I signed up for. I so badly want my old life back. I want to be running all over Ohio playing ping pong, teaching the harmonica and pleasing audiences with my musical charm. Instead, I'm over here on South Chestnut Street facing the most challenging questions that life has to ask. Transcendental Meditation encourages me to “take it as it comes.” If I'm honest, to some extent, I haven't been doing that. I often find myself fighting what is.
I don't have all my thinking on this subject figured out yet, but I'm glad to be sharing it with you now. Maybe it's naive to think that life could be a whole lot easier with a simple change of perspective. There's no doubt that everything’s a little bit harder living with chronic illness, but is the difficulty my own making? Could it be my lack of acceptance that makes it so hard? Possibly so. M. Scott Peck writes, "Life is difficult. This is a great truth, one of the greatest truths. It is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult — once we truly understand and accept it — then life is no longer difficult." Huh. Interesting…
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
It's 5:30 now on Friday afternoon in Ohio and it's time for my meditation practice. I look forward to an easy 20 minutes of sitting quietly on my front porch. I'm so grateful for the ease with which this writing has flowed out of me in the last few hours. I’d been struggling with it all week. It's been fun connecting with you this afternoon. And I love this easy weather we've been having in Kent. Truly, it’s been stunning. The leaves are changing, the sun's been shining and the temperature has been sitting right at my favorite of all temperatures. It’s been perfect. I gotta admit that I'm scared of the hard winter days ahead. Pretty soon, we'll be closing the windows and turning the heat on. But I think I'm just gonna take it easy. I think I'll just put an easy smile on my face and take it as it comes. I’ll let you know how that works out. Are you interested in joining me?
My sponsor often ends our morning phone calls with a gentle warmth that I truly appreciate. He says, "Easy does it, Hal." I have a feeling I know what he means. Easy does it. That's my blessing for you today. It's the beginning of October and the fact of the matter is it doesn't get a whole lot better than this. This is the moment we've been waiting for. So, I invite you. Enjoy living in that body of yours. Who knows how much longer we have here with each other. I hope you have a great Saturday. Thanks so much for reading. Easy does it. I'm sending warm wishes. ❤️ Hal
Follow me on Instagram. (235k followers) Hang out with me on TikTok. (2.6M followers) Grow with me on YouTube. (73k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to Living in a Body. Click the PLAY button above to hear the podcast version of this publication.
Today's episode is different than usual. My usual vehicle for this publication is writing highly edited essays. I spend all week perfecting every line, every paragraph and every word till it feels just right coming out of my mouth. But this week is different. I have not had the strength or the health to write and to edit. So today, I'm just gonna wing it. I'm going to tell you this story off the top of my head. And I'm a little uncomfortable, this is definitely going outside of my comfort zone. I'm hoping that it flows out in a way that I can be satisfied with.
I've experienced a very challenging setback, or maybe possibly a progression of the illness in the last two weeks. I'm living with severe symptoms. I'm very uncomfortable all the time. I’m more bedridden than I was two weeks ago and on top of everything, I'm not sleeping. It seems that the sleep switch is not working. I get a little bit of dozing in the night, but mostly, I'm not sleeping. It's been kind of hellish living in this body. And there are times when I just don't know how I'm going to face this. How I’m gonna survive this. It’s so intense.
The piece is called the hard class. One of my favorite people to talk to on the phone is this guy, Daniel, in Santa Cruz. He's a part of my 12 STEP program. And he is just so smart. I love the things he says. Whenever we talk, I just often want to write down the things he says, because they're so helpful. Well, this week we were talking and I was telling him what was going on. After some conversation, he said, You got the hard class of life. And that's been really helpful for me to see, to think of my situation as God's classroom. You know, this is God's classroom, I got put in the hard class. Now what am I gonna do about it? Really, for me, it's either that or despair and giving up and, and thinking about how I can possibly escape this life. So I did do some writing this week on this. This is what I came up with. It's just a couple paragraphs. It didn't get edited fully. There's all kinds of changes I’d like to make, but I have been too ill to make those changes. I just had my cold shower, I've got the window open. It’s a beautiful day in Ohio. And I'm here to share this part of the story.
The Hard Class
It seems that I've been put into the hard class, God's AP class for spiritual development. I definitely didn't choose this class. But for some unknown reason, this is where I got placed. Believe me, I’d do anything to drop this class and transfer into an easier one. But I've come to understand that transferring is not an option. It's not the way this kind of schooling works. Whether or not I like it doesn't seem to make a difference. Whether or not I think I'm cut out for it is not a factor. This is the classroom I'm in and it's time to get busy learning. There's no recess, no spring break, no summer vacation. No two weeks off at Christmas, and no graduation. It's nonstop, 365 days a year of a very challenging curriculum. I'm grateful to my sister who assured me this morning that if there were grades, I'd definitely be getting an A.
ME/CFS, one of the lead teachers of the class is mean as mean can be. She's brutal, she's unkind and she abuses her students. She doesn't seem to care about my feelings. It's almost like she takes pleasure in making her students suffer. My classmates, hidden in darkened bedrooms all around the world are nowhere to be seen. It's easy to feel like I'm all alone in my studies. I hope that someday there will be great rewards for having lived through this particular kind of hell.
…And that's as far as I got. My writing coach Lindsey, asked me where I wanted this story to head. And I guess where it's heading is what I've already said. That this is really a helpful way for me to see my situation. This is the classroom of life. And I've been given a very challenging curriculum. And I have an amazing opportunity to grow along spiritual lines.
Right now I'm not crying. I feel like I have it together. But I want to express to you how f*g hard this class is. Maybe you have got a hard class too. Maybe some of you have a hard class, but the people I look at on Facebook who went on their vacations and they're out there on their gigs, traveling the world. That’s the class I want. The class that’s free of chronic illness. I am so jealous. That's what I want. I don't want this class. I don't want this illness. It's so hard. I want an easier life. I want an easier, softer life. I don't want to grow along spiritual lines. I just want to enjoy the things I enjoy. But I've been given this very challenging curriculum.
One of the biggest challenges is I'm not sleeping. I'm barely sleeping. Last night, I barely fell asleep the whole night. And I'm doing everything right. That's the one thing I'll celebrate is I'm taking damn good care of myself. I don't look at my phone at night. I get up. I read from the Big Book in the middle of the night just to change my thinking. At night I'm in this crazy pattern of obsessive circular thinking that doesn't make sense. Turning from one side to the other. Right around nine o'clock, my restless legs just take over and it's so uncomfortable. And then I wake up feeling like hell, I don't even wake up because I never went to sleep. Today, I probably dozed off around five o'clock in the morning.
Anyway, I don't know if this is helpful or not. I much prefer having a well thought out perfectly constructed essay to hand over to you. And at least have some tears or something. I guess I'm just not in the mood for crying right now. That's my essay. That's it. It's called “The Hard Class.” It's the class I'm in and I don't like it. But you know, here's what I need. I need some cheerleaders. If there's any way you can be a cheerleader for me. I need that. I often feel so alone. I have a lot of people in my life. Here. Let me tell you this one more story.
Chris Martin, the lead singer of Coldplay happens to be a friend of mine. Not really a friend, but we know each other and we've talked several times on the phone. He's a super amazing guy. So the other day in my great state of being distraught, I called Chris Martin. I got a text that said, “I'll call you back in five.” So Chris and I connected and I told him what was going on and he immediately went into “how can I help you mode?” And he said, “Here's what I can do. I'm going to connect you with my world renowned Breathing coach. And he's gonna give you some one on one lessons on breathing because these breathing exercises have transformed my life.” and then he said, “I'm also going to connect you with Bob Roth, the lead teacher of Transcendental Meditation. And he's going to find a local teacher to come to your house and teach you Transcendental Meditation.” So it's amazing having a friend in a position who can just make a few phone calls and make this happen.
The next day, Patrick McKeown, Chris Martin's breathing coach contacted me. And we've had a couple of breathing lessons by zoom since then. I like his approach. It's all about slowing my breathing down, teaching my brain that I'm safe. And it's been very helpful.
And yesterday, I got a call from Bob Roth, the lead teacher of Transcendental Meditation. He has connected me with a TM teacher who's coming to my house today, in about a half hour, and she's giving me my first lesson. You have to learn Transcendental Meditation in person. It's passed down one to one, one person to one person. And I'm getting ready for that lesson. I'm a little nervous that I'm going to have to sit up for an extended period of time, but I have a recliner that I can sit in during the lesson.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
I guess, as I wrap up here, for some reason, I just want you to know how hard this is. I know everyone's got their hard s**t. I don't know why that would help me for you to know how hard it is. I want you to know also that I need help. I need encouragement. I need encouragement to keep away from despair, to keep away from hopelessness, and keep thinking of this as a classroom, God's classroom that I've been given. And now I have this opportunity to grow. I'm very scared though. I'll let you know I'm very scared and I'm very uncomfortable. I feel kind of like I've been living through hell.
I think with that, I'm going to wrap it up. I wish that we could have a conversation or something I wish that I could connect with you even more closely, but thanks for listening. That's my Substack for this week, episode 67. I love you. Have a great Saturday and enjoy living in that body of yours. Really is not going to be around forever. Am I won't be either. So today is the day. Have a good day. Bye bye
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to Living in a Body. Thank you being here! I hope you’ll click the PLAY button above to hear the podcast version of this publication. (14 min) And please feel free to share this episode with a friend!
Where Are the Men?
I've spent my life surrounded by women. Growing up with three sisters, I was the only boy. I'm grateful for the role that Julie, Johanna and KK have played in shaping my life, but I never got to find out what it would be like to have a brother. I've often wondered. I was left on my own to figure out how to be a boy. As a young adult, I often felt alone in figuring out how to be a man. Today, I’m grateful to have a handful of good men in my life to help me navigate that continuing process.
I'm fascinated by the fact that most of the groups with which I'm involved are predominantly women. My writer's group, The London Writer's Salon is mostly women. My 12 step program is mostly women. The ME/CFS community is mostly women. My church community is mostly women. The commenters on my Substack are mostly women. Every yoga class I've ever been to is mostly women. All my girlfriends have been women and my daughter is a woman. Sometimes, I find myself asking, "Where are the men?"
That was the question in my mind last January when I called up a couple friends with the hopes of starting a men's group. Chris and David were both enthusiastic about the idea, so we went in search of a few more guys. That week, I went outside of my comfort zone and I called up several acquaintances who I thought might appreciate something like this. The very next Wednesday, on February 1st, with six men present, we had our first official gathering. Except for a couple weeks off, we've met every Wednesday night since. Together, these men and I have created a beautiful structure that has allowed for deep connection and friendship. I don't know about you, but I'm hungry for that kind of thing. In fact, I'm dying for it.
I'll never forget the first time that I experienced structure in a social/community setting. It was 1989 and I was spending the summer as a camp counselor at a Quaker camp in Vermont called Farm and Wilderness. Every week, we'd begin our staff meetings with a personal check-in. We sat quietly in a circle and we took turns sharing about our lives. As a young introvert with a lifelong fear of conversation, I craved that format. For the first time in my life, I had a space where I could tell my story without interruption. Speaking my truth and hearing others speak theirs, I was so grateful to go beyond the level of small talk that I had dreaded my whole life. Ever since that summer, with a yearning in my heart to connect, I've sought out this kind of structure in group settings. For me, structure provides the freedom to be vulnerable and to go deeper.
In case you didn't know it, I have the best front porch on South Chestnut Street. It's a wide, cozy porch that offers shelter and privacy while at the same time giving a great view of the quiet street life. At 6:30 on Wednesdays, I don't have to do a thing. I finish up my dinner, I put the dishes in the sink and then the guys start showing up on my doorstep. I provide water from the tap, a downstairs bathroom and a candle. And that's it. These men circling up on my porch is the highlight of my week.
Over time, we've become like a loving brotherhood. We look forward to seeing other, we laugh with each other and we greet each other with big, strong manly hugs. I love to use the word "brother" when I'm welcoming one of these guys onto my porch. After the initial greeting, we sit in a circle and then we light a candle. That's the first part of the format -- lighting the candle. It signifies leaving the day behind and entering into the circle.
Then, one of the men will lead us in something we call "grounding." He'll offer a few calming sentences to bring the group into the present moment. I love the way each one of these guys has his own way of leading this part of the evening. Each week, the words are improvised and personal. It brings a dimension of creativity and shared leadership that I find very refreshing . I look forward to leading the grounding and I look forward to being led. It's different every time.
Then we set a timer and ring a bell to begin the practice of "presencing." I learned it from my sister, Johanna and she learned it from a guy in Boulder named Scott. Presencing is a group exploration of the present moment. We take turns sharing our experience of the moment aloud. As honestly as possible, when it's my turn, I share what I'm seeing, what I'm feeling, what I'm hearing, what I'm thinking and how I'm responding to the other members in the group. Offering me their warm presence and their quiet eyes, everyone else in the group is my witness. As the sharing goes around the circle, it's like a spiral dance of presence emanating from the candle. Week after week, this practice opens my heart and I find myself getting free of loneliness. I become part of something bigger than my self.
As a group, we've been presencing for seven months now and it's been awesome. I'm so grateful that each one of these guys is so committed to exploring this unique practice. I've found presencing to be a great way to break through the ice that builds up between us during the course of a week. It warms up the space, it gets us looking into each other's eyes and it invites a wonderful atmosphere of openness. The men in the group all agree that we don't get enough of this kind of connection in our daily lives.
After presencing, we sing a song that I wrote. It's our theme song. Sometimes we'll pass around instruments for everyone to play and sometimes we just sing it a cappella. Last week, we added some enthusiastic knee slapping and some poly-rhythmical hand clapping. I loved it when one of the guys broke into some improvised spoken word verses. I told him he ought'a write those words down so we could all rap them in unison someday. The song's called "Be Yourself" and it goes like this.
Be yourself. No one else but you. Shine your light.Let your true self shine through.
After the song, we go into what we call "storytime." This is the time when we tell a story from our lives. It could be from today, this week or 20 years ago. From the heart, we practice telling the truth. Every story is different and there's no time limit. Last night, I told a story about finding God at the Quaker meeting last Sunday. Maybe I'll tell you that story another time. During storytime, in a listening circle of men, week after week, I get to share the stories of my life. Then, I get to listen to other men tell their stories. To be honest, that's the more challenging part for me. As I may have shared with you before, I'm a terrible listener. My attention span is about the length of a TikTok video. But, during storytime, I sit quietly and I practice paying attention. I care about these guys and whether I’m listening or not, I love storytime.
After each man shares his story, we have a brief time called "the rebuttal." This is when we ask questions or respond in some way to the story. Just so you know, the name "rebuttal" is a joke. We're all clear that nothing is being rebutted. I appreciate the word though. It makes me laugh every time I say it. We've found that this time of response requires great skill and care. It can easily go wrong. We've discussed how important it is to let the other man's story be their story without trying to fix anything. I'm grateful that the container of our group has survived well through a few minor uncomfortable moments. As I write about it now, I can't wait to hear the stories next Wednesday.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
At nine o’clock, about two and a half hours from when we started, we're ready to wrap up the evening. The final part of the format is fairly new. We just started it last week, but I love it. It's called the "blessing." Each man offers a personal blessing to another man in the group. This is a sacred act of one man wishing another man well. I've found the blessing to be so touching and I'm really glad that we discovered it.
Then we blow out the candle and say our goodbyes. After a few good hugs, we head our separate ways. I head into the kitchen to plan my food for the next day. Sometimes, on my way upstairs, I'll notice a few guys still hanging out on the sidewalk talking. Every Wednesday, I go up to my bed feeling well blessed and well connected.
So, I asked the question, "Where are the Men?" and then I took some action. I gathered a group of men around me and I haven't regretted it for a minute. If you're a man and you weren't one of the guys that I reached out to last January, please don't take it personally. Our initial vision was to keep it small. We couldn't invite everyone that would have liked to. Today, I offer this structure for you to use in your own life. Go for it! Do what we did. Invite a few people that you barely know to come to your house every week. Explain the concept of "presencing" and "storytime" and see what what happens next. I look forward to hearing all about it.
Thank you so much for being here. I'm so grateful for this platform and for your attention. As always, Enjoy living in that body of yours. Savor every moment. It's not gonna be around forever. I’m sending blessings your way… and wishing you the very best. I’ll see you next time. Hal
Follow me on Instagram. (226k followers) Hang out with me on TikTok. (2.6M followers) Grow with me on YouTube. (73k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Join Hal in supporting the work of OMF
Hi. I just donated $55 to support the work of Open Medicine Foundation. I hope you’ll join me is supporting this good cause. (Link Below)
On September 10, OMF’s Founder & CEO Linda Tannenbaum is tying up her laces for the 2023 Surfers Point Marathon to raise awareness & fund collaborative research for ME/CFS, Long COVID, & related diseases.Double Your Impact - Linda & her husband are matching all donations up to $10,000! That means every dollar you give is doubled in its power to change lives.
Severe
It's hard to imagine that my current condition might not be considered "severe." It sure feels severe to me -- the incessant ringing in my ears, the cold, damp feeling all over my body, the dense fatigue in my brain, the constant battle with my breathing, the aching weakness in my legs, the burning dryness of my eyes and the not-so-subtle turning in my stomach. It's a difficult and intense experience living in my body these days and I get little relief. When I'm up and about, I have an almost perpetual longing to get back into bed. At times, the illness consumes me... and I'm not even severe. Maybe the label doesn't matter so much, but out of respect for the ME/CFS patients that have it so much worse than I do, I'm willing to call my state of illness "moderately severe."
Here’s the level of my wellness. I'm able to hop up easily from the bed to use the bathroom. I'm able to prepare my own meals. I can ride my scooter into town for groceries. I'm able to sit on my front porch and play the handpan for a little while. I can sit up at my laptop and write for forty-five minutes straight. On Sunday, I went to church. And last week, with the help of a wheelchair and my nonagenarian mother, I travelled to Miami, Florida to see my daughter in a play. Hallie gave a stunning performance in a cutting edge production of The Little Mermaid and I got to be there for opening night. The trip was definitely a stretch and it may have been foolish, but I'll do anything to be in the same room with Hallie Walker.
I feel sick most of the time and I spend much of the day in bed, but I know how much worse it could be. Like a hidden monster, "severe" is always looming around the corner. I've heard the stories, I've read the posts and I have friends in the severe community. I've experienced first hand the unforgiving nature of ME/CFS. But I'm not severe. I don't need a caregiver, I can drive short distances and today, I've got a good appetite for breakfast, lunch and dinner.
My friend James, who’s completely bedridden, mentioned that everyone with this illness thinks they're "severe." With symptoms more intense than they've ever experienced before, most people can't imagine what it would be like if it got worse. Then it gets worse and they realize the blessing of what they had before. I'm sorry to report that my level of severity has recently worsened. I'm sicker than I was six weeks ago. This decline has significantly impacted the quality of my life. Everything is more difficult. Writing this episode is more difficult. Recording it is more difficult. And just facing a day is more difficult than it was six weeks ago.
The summer cold that I caught on July 12th made a profound change in the baseline of my symptoms. There's no way to know if it's a permanent shift, but it sure feels that way. A couple years ago, my friend Peggy introduced me to the term "perma-crash" and it's been haunting me ever since. This feels like a perma-crash. It's like my body has locked into a new normal and it can't find its way back out. That's the crazy ruthlessness of Myalgic Encephalomyelitis. Everything can change overnight just because you went out into public one day and accidentally caught a little cold. I'm living now with the regrets of having not been more cautious, but I was just trying to live a life. Without my permission and against all my plans, reality points to the fact that this cold has moved me one step closer to "severe." But I'm not severe. I'm "moderately severe." Knowing what I know about severe, I'm truly grateful for the function and the wellness that I have today.
Aug 8 was Severe ME/CFS Awareness Day. Begun by an organization called the 25% M.E Group, the day calls attention to an illness that is mostly hidden in the darkened rooms of the "millions missing." All around the globe, people are fighting for their lives and too often, they’re losing the battle. The organization writes:
Severe ME Understanding & Remembrance Day is a day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
To honor this day, I’ve asked a handful of friends to share their experience of being "severe." A couple of them were not well enough to contribute. So today, I share the brief reflections of three people that are living with severe ME/CFS.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Peggy Munson is a friend of mine who lives on couple beautifully gardened acres in Western Massachusetts. I enjoyed a face to face visit with her last March. She’s been living with a severe version of this illness since 1992.
What severe means to me. Well the math never works out. I can save my energy for weeks and weeks and weeks and I never have enough to do anything really fun. I have not been able to get home to Illinois, where I grew up for 25 years now almost. I can almost never be around people. The social isolation is just brutal for me because I crash so badly from human contact which has to be the worst. I'm so jealous of people who have even a little bit more health than I do and yet I feel alot of sorrow for those who have it even worse. Disconnect from everything that I thought my life would be.. my aspirations, my dreams, my hopes.. it's just gone.
Martin Hippe lives in Germany. I met him on Instagram. (@paused_me) He’s been living with this illness since 2013. Using the energy that he has to raise awareness of the illness, Martin is an outspoken voice for the ME/CFS community.
Being very severe with ME/CFS means loss of self efficacy. The disease is degrading. It imprisons. It tortures. For me, it led to artificial feeding. There was a tube in my bed for 2 1/2 years. It led through the abdominal wall into the stomach. Without the tube, I would be dead today. I would have wished it at that time. Being severe means consciously witnessing how the body is tied to the bed. It is sad. Friends leave. Everyday is cruel and painful. It is torture. When it gets you, you are neither alive nor dead. You have very severe ME/CFS.
Before the sudden onset of the illness on October 26, 2018, Martin Keogh toured the world teaching and performing dance. He recently published his sixth book. It’s a book of poems called “Naked Realities.” You will find him on facebook as “the Missing Neighbor.”
I am one of the millions missing and I go by the name "The Missing Neighbor" and here we are marking those of us who are severe with ME/CFS. For myself, I'm bed bound about 22 hours a day. This is what it's like. Overdoing becomes the death of me. So I do everything in my power to keep from crashing with all its symptoms to not terrify myself and my family. I vigilantly practice pacing, do less than I'm able and live by the motto, "Bed is Beautiful."
Thank you so much to both the Martins and to Peggy for sharing your voices. From my bed to yours, somehow we’ve got to stick together through all this. I feel like you’re my siblings on this journey. Thank you everyone for taking the time to read this post. I never imagined myself being in the position of having to write so personally about such a difficult topic. Your attention means a lot to me.
As always, have a great week. And don’t forget. Enjoy living in that body of yours. What a blessing is this life — with all its joys and all its challenges. I’m reminded that in any moment, I can choose joy, so that’s what I’m gonna do right now. Ah… joy. All the best to you. Sending love. Hal
More about Severe
From the Website https://25megroup.org/me/
ME is a WHO classified neurological disease with multi-system dysfunction.
It is a physical disease that, in its more severe forms, is severely to profoundly disabling.
The most severely affected have multiple serious symptoms, often not investigated or under-investigated, that incapacitate people to such a degree that 25% of them are effectively house bound or bed bound, may use wheelchairs part or full- time and are barely able to move.
There is no cure. There is no consistent or universal treatment. The pain of Severe/Very Severe ME is so extreme that drugs do not touch it and many are forced to take extremely strong drugs to gain minimal reductions in pain levels. Others have no pain relief at all due to acute drug sensitivity.
Quality of life tests indicate that severe ME sufferers feel every day significantly the same as an AIDS patient feels two months before death. 98% of people with severe ME do not get better. Peterson describes ME as “one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages”.
25% of sufferers with severe ME describe themselves as bedridden, and 57% have been either housebound or bedridden for more than six years, illustrating “in numbers rather than words that morbidity in ME can be substantial, despite the opinion of many healthcare professionals to the contrary.”
Researchers have demonstrated numerous abnormalities of the immune, muscular, cardiovascular, and central nervous systems. The emerging picture is of a multi-system disease with a strong component of immune and neurological dysfunction. The World Health Organisation recognises ME as a neurological illness.
ME describes an illness characterised by a combination of muscle pain (myalgia), and neurological and cognitive symptoms such as memory loss and concentration difficulties (hence ‘encephalomyelitis’). As with any illness, the symptoms and disability which results will be experienced differently by each individual. Symptoms can vary in severity and commonly include chronic pain and lack of stamina/weakness of the muscles and limbs, acute hypersensitivity to stimuli such as light and noise, cognitive and memory problems, vocal/muscular limitations, multi-joint pain, and severe migraine type headaches.
Severe ME– “Will be able to carry out minimal daily tasks only, face washing, cleaning teeth, have severe cognitive difficulties and be wheelchair dependent for mobility. These people are often unable to leave the house except on rare occasions with severe prolonged after-effect from effort.”
Very Severe ME– “Will be unable to mobilise or carry out any daily tasks for themselves and are in bed for the majority of the time. These people are often unable to tolerate any noise and are generally extremely sensitive to light.”
This means their physical and mental limitations are very acute. Commonly the person will require to use a wheelchair to get around, help with transferring from seat to seat within and out with the home, and may have problems with sitting up, using their arms and hands for even simple tasks like doing up buttons on clothing, and have difficulties toileting and bathing themselves. Some very severely affected patients are unable to do any of these tasks because of very severe pain and muscle weakness (not due to misuse or under use) and even transient paralysis – normally down left side. This can leave the person unable even to swallow, or to turn themselves in bed.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to “Living in a Body.” If you look forward to these posts week after week, I hope you’ll consider becoming a paid subscriber. Special thanks to all 78 of you who have already chosen to support this publication financially. Your support means a lot to me.
Cold Showers
I'm a Pisces. I've always liked water. I like lakes and oceans, quarries and hot springs, float tanks and rain showers. I've been known to throw off my shirt and my pants and walk out into a thunderstorm with nothing but my underwear on. At the lake, I pride myself in being one of the first in the group to dive under, acclimating my body to the temperature of the cold. In 2013, I went through the belly of a dragon and I almost died in the Pacific Ocean, but I survived. (See Bonus Life) Needing work on boundaries, the water sign in me is alive and strong.
After lunch today, I sat on the back porch in my wheelchair with my feet kicked up on the black patio table. As I gazed out at the yard, I began dialing phone numbers. My contact list is full of a 12-step fellowship that offers me a program of abstinence, gratitude and service. Recently, I've heard it referred to as a program of facing reality, no matter how painful that reality is. There's no doubt, my reality is very painful these days. I need all the help I can get to face it. I've found that these outreach phone calls help a lot.
After a couple connections, I came up to my bed to lie down again. As I approached the bed, those familiar uncomfortable sensations came to the forefront of my attention. These days, it's a burning in my lungs that verges on pins and needles. It's a weakness in my arms and an aching in my legs. It's a ringing in my ears and a buzzing restlessness throughout my whole body. When I start to focus on these symptoms, my habitual response has been to go into fear, panic, hopelessness and grief. Crying alone in my room is the daily penance of my life.
My sister Julie has become very familiar with the desperate sounds of my cry during the rough times. Sometimes I call her several times a day seeking comfort. She has a friendly kind of coaching voice and a loving sisterly presence. Lately, I've been noticing that she answers the phone with a certain amount of tentativeness in her voice. She never knows what version of Hal is on the line when I call. Often times, it's the scared little boy version. I so appreciate her willingness to pick up the phone. We always end the call by saying, "I love you." That's kind of a new thing in my family and I like it.
This afternoon, I took a different approach than my usual. I chose calm. As the desire for tears swelled up in me, I sat up from the bed, walked into the hallway and I stood before the full length mirror on the closet door. Wearing nothing but my shorts, I stood strong and tall and I looked deeply into my own face. I took a few calming breaths and I moved my arms in a kind of circular T’ai Chi motion.
In the mirror, I look healthy. This illness is such a paradox in that way. How could I feel so sick when I look so damn good? People are always telling me that I look good. My reflection shows that my hair is trimmed tight and my face is clean shaven. I'm slim with pale and pink skin and just a little bit of a 57-year-old paunch in my belly. With my glasses on, I could almost pass as a shirtless drill sargeant.
After a few breaths, I felt stronger in my body and the symptoms eased up a little bit. Just for a moment, it felt like reality was manageable. Then it occurred to me that it was time for another cold shower. I turned around, slipped off my shorts and walked into the tub. This was probably the 5th or 6th cold shower of the day. I swing the curtain closed, turn on the cold water and I welcome the cool sensations as I turn around in place for about a minute. When the shower is done, I grab the previously dampened towel and I get half dry. With the windows open, the drying happens on its own within minutes.
These cold showers jolt a little life into my body and they help calm me down. I often come out the shower inspired to go on living. In the last few weeks, there have been days when I took probably 10 or 15 cold showers in one day, all the way up to the last minute before bed. I’m grateful for the open windows, the summer air and the fan that runs continually next to my bed.
It was the practicing calm in the mirror and the cold shower at two o’clock that inspired this writing today. I wasn't planning on sending anything this week, but now I'm glad to be sending this. I like connecting with you this way. I like reminding you that I still exist over here on South Chestnut Street. I'm gonna scoot over to the Kent Natural Foods now to buy some sweet potatoes and some brown rice. I think I'll try to practice calm the whole way there. It's probably the best thing I can do for this tender body of mine. I imagine that I’ll take another cold shower before dinner and then another one before bed. Having a cold shower right next to my room is the next best thing to having a lake in my back yard. Maybe tonight’s the night I’ll throw the towel in the washing machine.
Thank you so much for being there. Thank you for reading this and for listening. And don’t forget. Enjoy every minute of living in that body of yours. No one knows how much longer we got. Alright? I’m sending all my love your way. See you next time. ❤️ Hal
Follow me on Instagram. (226k followers) Hang out with me on TikTok. (2.5M followers) Grow with me on YouTube. (69k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m sorry to report that in the last two weeks ago, I’ve experienced a significant setback in my ME/CFS symptoms. I’m very distraught about it. Living in the current state of my body has been so incredibly difficult . I’m grateful for this Substack that gives me something to distract myself from the discomfort. Thank you for being here. For the podcast version, I hope you’ll click the PLAY button above. (15 min) Enjoy.
Dad’s Prayers
Growing up in my household, it was my dad who said the prayer before the meal. With a soothing southern baritone drawl, Dad would ease God into the room and bring warmth and connection to whomever was gathered. Whatever the setting, my dad's elevated words called the spirit to be present. Whether it was praying before the meal of a community potluck or circling up around the table with family, Dad's prayers welcomed us home into the sacred.
Rev. Harold Walker Jr. came from a tradition of prayer. In his lifetime, he devoured every dense liberal theology book ever written. The language of prayer was deeply ingrained in his being. His words were grounded in the long history of the Presbyterian Church but he was a master at adapting those words to fit any multi-faith situation. He knew how to improvise sacred language off the top of his head and he didn't just speak the words. With the theatricality of a preacher and the musicality of an Alabamian, dad would practically intone the prayer. I miss my dad's voice so much.
He spoke with ease and formality. His prayers brought ceremony to the act of sharing a meal in community. When we circled up in the living room on Thanksgiving or Christmas or Easter, sometimes battling the blasphemy of his children and his grandchildren, Dad held dear to the depth and the importance of this pre-meal ritual.
Never self conscious or self centered, his prayers were for the people. He prayed for world community, for a transformed society and for those near and far who are less fortunate than we. He gave thanks for the food and for the blessing of family and friends. Sometimes, his prayers went on for quite some length. But around the nightly dinner table, they were succinct and they followed the same nameless form, the form that became so familiar in the lives of my family and everyone who knew my dad. Sometimes, he wrote prayers out for special occasions. Here's one he wrote for the occasion of an interfaith Kent Community Potluck: (text below)
“Spirit of God, we pause in reverence and in praise for the good gift of life, and for this wondrous world in which we live and move and have our being. We are humbled and amazed when we think about the richness and diversity of this human family -- the myriads of groups and associations in which we realize our humanity -- and the conflicts and the challenges of our common life. Our thoughts go out to neighbors near and far, in any place, who may feel excluded, or who feel hurt and hunger or who are the sad victims of violence. May your spirit teach us to be instruments of healing and of peace.
We celebrate our life together and we celebrate the spirit of community which invites and unites us who are gathered at this table. May this be for us a symbol of the vision of friendship and of peace which calls us to the shaping of more humane communities in which all people share the good gifts of the earth and in which all may revel in the general dance of your creation.
May peace abide at these tables and may we all be filled with the spirit of gratitude, of friendship and of hope. Receive our thanks for this meal and all that it represents. In your spirit we pray. Amen.”
When my dad died, there entered a void in my family where his prayers used to be. Six years later, when we gather for dinner, we're still not quite sure what to do when we circle up. We haven't found a clear replacement. My mom often asks one of us to read one of Dad's composed prayers. Sometimes we sing a song that Johanna and I learned in Western Massachusetts many years ago.
The silver rain, the shining sun and fields where scarlet poppies runAnd all the ripples of the wheat. Are in the bread that I do eat..So as I sit at every meal and sing a grace I always feelThat I am eating rain and sun and fields where scarlet poppies run.
Sometimes my eldest sister Julie will recite the great poem by Richard Euringer:
O Thou who clothest the liliesAnd feedest the birds of the skyWho leadest the lambs to the pastureAnd the hart to the watersideWho hast multiplied loaves and fishes And converted water into wineDo thou come to our table As guest and giver to dine.
Sometimes we sing a hymn. Sometimes we go around the circle and say something we’re grateful for. Sometimes we just dive in and start eating. Pretty much always we break into a funny and sacrilegious version of the old spiritual “Amen. Amen. Amen. Amen. Amen.” The second verse goes, “A-women, A-women, A-women, A-women, A-women.” And Then it goes on from there. It’s quite hilarious. My dad always hated it though.
When Dad died in 2017, the extended family gathered at my mom's house after the memorial service. I remember being well aware that there was no one present who could handle the depth of our need for a unifying blessing before the meal. As the only son, I felt a great sense of pressure to step up and fill the void. I was terrified. But with a tremble in my voice, in front all the sisters and the cousins and the aunts and the uncles, I opened my mouth and I started praying. I don't remember what I said but I remember that it was honest and it came from the heart. When I was done, I was glad that I did it. At the family reunion last month, I didn't have such courage. Night after night, I looked to my sisters to come up with an idea for gathering. I was too scared to be so vulnerable. As the son of the master of praying in public, I was afraid to open my mouth.
I’m so curious what my dad’s personal prayer life was like. As far as I know, he didn’t pray before bed or upon wakening. I'd love to be able to sit down with him and ask him all about it, but I’ve missed my opportunity to do that. I have a feeling that his prayer life happened while he was working in the garden, doing laps in the swimming pool, reading a book on a porch in Chautauqua or pondering the world with his friend Lloyd O’Keefe.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Wherever he is in the vastness of the universe, I regularly speak out loud to my dad. Lately I've been saying, "Dad. I'm scared." And then I start crying. And then he responds with something like, "I love you, son. I’m so proud of you, son. I'm sorry it's been so hard. It's gonna be ok, Hal. I’m here with you." I'm crying right now as I write this.
I'd like to say some sort of prayer now — a personal prayer. But I’m afraid. Who am I to say a prayer in public? I’m a musician. I’m a performer. I’m a banakula player. I don’t know how to pray. I don't have the humility to pray. I don’t have the tradition and I don’t know the form to pray. Heck. I don't even believe in God. Or maybe it's "belief" that I don't believe in. My friend Pádraig says it well, "Whatever the mystery of the source of all things is, 'belief' is a weak verb for talking about it. I can't bear that burden. Maybe I can Behold. Question. Argue. Circle. Anything is better than belief."
So, from this bed of yearning, this house of doubt, and this body full of illness and fear, I call out to the highest power that is and I pray.
Dad. Granddad. Are you there?
Earth. Can you hear me?
Angels. Please gather around me. I command you. I need your help.
God, you know my heart. Do I really have to say anything. When I get on my knees, I just start crying.
I'm so scared. I’ve been so sick and so scared all day. This illness has a hold on me and it’s terrifying. The symptoms have been so severe and I’m having a hard time handling it. The grief alone seems more than I can handle. It’s so hard, God. Please ease my suffering.
Here’s what I ask. Fill my whole self with a sense of safety. Comfort me from the inside. I’m begging you. Please ease my tender nerves and quiet my desperate thinking.
By the way, thank you for this moment. Thank you for the breath that I have and thank you for the connections that I made today. Thank you for Stu and Pádraig and Andrew and Margot and Anne and Steve and David. I’m especially grateful for that long hug when I cried in David’s arms. I’m so grateful to have these people in my life. Remind me that I’m not alone.
Ease my thinking, God. Help me to stay free from panic and despair. Return me to the reality of this moment and show me where I can be useful. I want to be useful . I want so badly to go back out into the world and do the things I love to do. I really just want my body back. But I have a feeling that that’s not your job.
How could this illness be an actual thing? It’s so cruel. Right now, I’m sending love to all the people who are suffering with ME/CFS. I’m sending all my love to Peggy and Martin and Lizzie and Whitney and all those that have got it even worse than I. Somehow, show us how to survive this, one day at a time.
Make me an instrument of your peace, God. Let me be an example of living gracefully under challenging circumstances. Relieve me of the fear, the self-pity, the despondency and the hopelessness. Free my heart and fill it with gratitude.
Thank you.
And as my dad would say, in your spirit, we pray.
Amen.
Thank you so much for reading and thank you for listening. I’m so glad that I have this platform. I hope you’ll leave a comment. I need encouraging words in the comments. :) Remember… enjoy living in that body of yours. It’s not gonna be around forever. Take advantage of it while you got it. Sending you all my love. See you next time. ❤️ Hal
Follow me on Instagram. (226k followers) Hang out with me on TikTok. (2.5M followers) Grow with me on YouTube. (69k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Here’s a quick one to let you know that I’m still here. ❤️ Hal
Summer Cold
I'm a super nice guy. But I'm living with a very mean illness. ME/CFS has shown its ruthless side once again this week. My symptoms have been very severe. Under the reign of this illness, I feel so fragile, so alone and so afraid. I spent most of the day yesterday crying. It was a kind of bottomless pit crying that didn't seem to have an end. It eventually ended when the melatonin and the ZzzQuil finally kicked in around midnight.
My breathing has been heavy and labored. My legs are aching with fatigue. Even the slightest exertion makes my heart race and gives me an overwhelming feeling that I need to lie down. I did the dishes tonight and then retreated to my bed in fear of the potential consequences of my actions. When I lie down, I feel wired and trapped. I move my arms and legs up and down, side to side and all over the single-size bed trying to ease the restlessness. Right around 10 o'clock, it's like there’s a wire that gets turned on in my body and I can't lay still. I writhe in the bed until I finally fall asleep way too late. Sleep is my refuge.
Today I'm trying to stay calm through all this. I’m trying to accept the amount of rest that I need and not fight it. I started the day with a half milligram of Ativan. That helped for a little while. But then every once in a while, I experience a swell of weakness and heavy breathing and I return to that place of panic and crying. I'm tired of being in this bed and I'm tired of being in this room. It's been a really rough week.
After spending an enjoyable few days at the US Go Congress at the Kent State Student Center, on Thursday night, I came home with a nasty summer cold. ME/CFS doesn't handle viruses well. The cold symptoms on top of my chronic symptoms have been just about more than I could handle. But one crying call to my sisters after another, I somehow keep handling it. Today is day seven of this cold and most of the cold symptoms are gone, but I'm left with the post-viral state of ME/CFS -- a post-viral crash. With every labored, exhausted breath, I'm hoping and praying that my body will go back to its previous state of normal. In the past, the rougher days have always eventually eased up. But with this illness, there's no gaurantee. There's no way to know what's gonna happen next. My brain is full of ME/CFS horror stories of people for whom the illness just kept getting worse -- more and more bedridden year every year. I hope and pray that I'm not gonna be one of those people. I just want to get back to the way I was last week.
I'd like to say that I'm facing these challenges with great spiritual finesse, but I don't think I am. I'm so pissed at the way things have turned out for me. It's not fair. I'm full of fear, self-pity and remorse. (I should have taken more precaution when I was in that ball room full of Go players.) This illness terrifies me. I'm scared of the severity of my limitations and I'm scared of growing old in this body. It seems that the potential of worsening symptoms is always just looming around the corner. My mind and body have been through so much in the last two years. The grief and the trauma is more than one guy should have to go through in a lifetime. I’m sorry if this seems dramatic, but I gotta let it out.
After a month long break from the writing, I'm struggling now to put a few words on to the page to let you know that I'm still here. I’m still living in this body. While the rest of world on my Facebook feed is living up the summer, I’m still here in this room with a fan pushing air through the window. I write a few words and then I rest. My foggy, buzzing brain can't keep up with my desire to create.
I'm finding the quiet of this summer to be a bit maddening. My summers of the past were always packed with camps and trips and gigs. I did get to have a weeklong vacation on Lake Erie with my family. It was awesome. I'll leave some pictures below. Other than that, I've been enjoying playing my handpan on the front porch... watching the hours pass by.
That's all for now. I'm sorry that this post has been a bit of a downer. It's the reality of ME/CFS. The physical symptoms and the isolation have had a strong effect on my thinking. I'm just not the fun loving hilarious guy that I used be. Hopefully we'll get back to that.
I love you. thanks for listening. Thanks for being here. I’ll see you next time. Hal
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Chasing the Numbers
My granny used to always say "Set a date and it will come," But I've also heard it said that "a watched pot never boils." I guess, in this instance, my grandmother was right. I've been looking forward to this day for a whole week now and it's finally here. It took forever, but the watched pot did finally boil and Tuesday has arrived.
On last Wednesday, it was so far away that it seemed like forever. On Friday, I was coaching myself, "Just four more days, Hal. You can do it." On Sunday, I was white knuckling it, “Hold off, Buddy. Tuesday's just around the corner." On Monday, the anticipation continued to build and this morning, it's finally here. Tuesday has arrived. In hopes of savoring every moment, I've decided to put it off until after lunch. My plan is to sit out on the front porch and to soak in it for at least a half hour.
I'm embarrassed to tell you the cause for all this waiting. You’d think I would’ve outgrown this by now. But, since I tell you 85 percent of everything, here we go. This afternoon, for the first time in a full week, I'll be checking my notifications on TikTok. After a self-imposed week-long fast from it, I'll be opening the app and reviewing the numbers. I'll check the numbers of views, comments, mentions and dollars that I've received since last Tuesday. I'm expecting these numbers to be very large in each of the categories -- millions of views, thousands of comments and many hundreds of dollars. I'm expecting at least several minutes of great pleasure in this review process but I'm also predicting that it will be followed by a let down, a kind of disappointment. No matter how high the numbers are, they're just digits on a screen. They'll never be high enough to solve my loneliness problem, to fix my chronic illness situation or to fill that God-sized hole in me. The pleasure will be fleeting. It's a feeling that I've gotten quite used to in this TikTok game of chasing the numbers. The creators of the app have succeeded in keeping me coming back for more.
The story begins in May of 2019 at an elementary school gymnasium. I was giving a music assembly to third, fourth and fifth graders. After sharing a carload of musical instruments that “fit in your pocket” and teaching the students to play the ancient hand whistle, I took questions from the audience. One fifth grader stood up and asked, "Are you on TikTok?" At the time, I had no idea what TikTok was, so I replied, "No, I’m not." She said very matter-of-factly, "You should be." After the assembly, with a group of 5th graders huddled around me in a pre-pandemic cluster, I promised to sign up for the new app. The fifth graders promised that they would “follow” my account and that they’d "like" my videos.
Glowing from a full day of connecting with elementary school students, I returned home that afternoon with big hopes for viral success. The insecure fifth grader in me imagined that after all these years, I'd finally get to be one of the popular kids. On May 19, 2019 , I downloaded TikTok and uploaded my first video. By the end of the evening, I had 20 fifth grade followers, the video reached 50 views and I entered the world of chasing numbers on TikTok.
It wasn't until January of 2020 that I had my first experience of going viral. I'll never forget the excitement of watching the view numbers soar for the very first time. I'd never seen numbers like that before on Facebook. Every time I'd refresh the screen, the video would jump another thousand views. Watching the numbers go up that fast was like a drug and I was the addict shooting it into my veins. I just kept wanting more of the same. In every lull of the day, I would reach for my phone in search of another hit. My sponsor at the time questioned whether this was healthy for a guy like me, but I justified my behavior and I swept his questions off to the side. I'd been waiting my whole life for my music to have this kind of reach and I wasn't gonna let anything get in the way of my new found success.
Four years later, I'm still killing it on TikTok. In total, I've posted 1300 videos. I have two and a half million followers and my content has been viewed about three quarters of a billion times. As a result of all that success, I've reached for my phone to check my notifications a sickening number of thousands of times, each time with the same results — a momentary rush followed by a s ubtle form of dissatisfaction and wanting more. A week ago, I admitted once again that the checking was getting out of hand, so my sponsor suggested that I take a week off. I was afraid of the suggestion, but in a moment of spiritual yearning, I embraced it. My plan was to continue the creative process of video making, but for a full week, I would not be looking at the numbers. In spite of my impatience for the week to pass, it’s been a great lesson. I am once again painfully aware of my perpetual urge to escape this reality. Living with chronic illness, I crave the momentary relief that the numbers offer. But I’m always left with the post-notification let down, that feeling of emptiness that chasing numbers brings. For this one week, I was free of that cycle.
As I’ve been eagerly awaiting my return to the notification screen, I've been planning a more weighed and measured approach to the whole thing. I’m quite happy with the idea of opening the app once a day for a few minutes of scrolling, checking numbers and connecting with my audience. With strong resolve and the help of my highest power, I fully intend to take a more life giving approach to this world of sharing my music on TikTok. One day at a time, there will no more checking numbers all day long and scrolling my “for you” page into the night.
TikTok was in its heyday when I joined in 2019. I felt like I was joining an amazing homegrown community of artists — musicians, dancers, comedians and actors all coming together to put on the most amazing talent show in history. But over time, things have changed. Hollywood and big corporations discovered the app and the sense of community got lost. Just a month ago, I'd pretty much given up on TikTok. My views were down, the creator fund that I was a part of was paying me just pennies a day and my “for you” page was full of viral videos that pulled me in but didn’t feed my soul. My own role as a musical sensation on the app was fading and I was convinced that the age of @banakula (my TikTok handle) was over.
Then I got a notification that I was eligible for something called the Creativity Beta program. After doing some research, I learned that the Beta program pays its creators a much higher price per view than the Creator Fund. But there's one major stipulation. You only get paid for videos that are at least a minute long. In competition with YouTube, for the first time ever, TikTok is promoting long form video. In 2020, I became a master of the 15 second video. I learned to grab the viewers attention fast and I didn't need to hold it long for my videos to go viral. I had some incredible success with short videos, but my approach was no longer working. Even though I was continuing to enjoy the creative process, in the numbers game, my short videos were flopping. I was losing interest, so I thought, "Maybe I should give this Beta program a try. What do I have to lose?" Understanding that once you leave the Creator Fund, there's no option to return, I decided to take the risk. Two weeks ago, I joined the Creativity Beta program. Ever since then, I’ve been on fire. I got out my higher quality camera, I began filming in the best light possible and I started creating videos that were at least a minute long. TikTok has been loving it.
As is always the case, Tuesday afternoon came and went. It’s now a couple weeks later and I’ve successfully been opening the app just once a day. I’m grateful for these new boundaries. They seem to be working for my benefit. The numbers for today were as follows: In the last 28 days, I've posted 27 videos that were each longer than 60 seconds. I've received 42 million views on those videos, 76,000 comments, 4.6 million likes and more than 5000 dollars. As I said before, I'm killing it on TikTok.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
All the while, I'm still living in this body. Last Saturday, I experienced a crash, or a worsening of symptoms that has me very concerned. I’m terrified that this is gonna be my new normal. My success on TikTok is so insignificant compared to the failure of my physical body. I would give away all the views, all the follows and all the money, just to feel good in my body again. I’m so proud of Hallie who’s been enjoying doing CrossFit in Brooklyn, but I’m so jealous. I wanna do CrossFit. Of course, I’d even settle for a nice long walk around the block. Earlier today, I was crying out to God. I said, “Ease up on me, God. C’mon, ease up on me.”
I’m grateful for the creative spirit in me that just won’t stop. I keep facing greater limitations but I keep showing up for the process. I admit that once a day, I’m still chasing numbers on TikTok. I’m looking for relief in a place that can’t sustain my needs. But at least I’m not doing it many times a day. I guess we can call that progress.
Thank you so much for being here and for giving me your attention. I’m so grateful. I’ll be take a little break for a few weeks in hopes of regaining some strength after this crash. My family will be spending some time together in a big house on Lake Erie. Let’s hope that does me some good. I’ll be praying for acceptance and for guidance through these difficult times. And right now, I’m sending you all the love, all my best wishes and all the good things in life. Enjoy living in that body of yours. See you next time. Hal
Follow me on Instagram. (217k followers) Hang out with me on TikTok. (2.5M followers) Grow with me on YouTube. (69k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.4k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
It's 11 am on another beautiful Thursday in Ohio. My shades are pulled dark and the elementary school students just walked by my house on their annual field trip to Fred Fuller Park. I could hear the crowd of young voices coming from a distance and then I heard it fade away as they headed down toward the river. These are the echoes of children on the glorious last days of school before summer. This chorus is my annual reminder that June has arrived. One more generation of students with a whole new generation of teachers and I'm grieving the passage of time. As I lie here in this bed of chronic illness, it's hard to believe that it's been almost 20 years since Hallie was that age. I'm 57 now, mostly retired and I'm feeling a little bit left behind. The combination of aging and chronic illness is certainly not for the weak of heart and unfortunately, I think I may have a weak heart.
My symptoms are severe this morning. I'm grateful that they usually ease up in the afternoon, but for now, it's rough. The ringing in my ears is louder than usual and the tired aching in my legs is profound. I've barely left the bed, so there's no reason to be this exhausted, but that's the grueling reality of this illness. My body seems to have forgotten how to produce energy. Even after a long night of sleep, my legs feel like the legs of someone who's been working all day while wearing shoes that don't fit. I've got that raw, out-of-breath sensation in my lungs and my brain feels sensitive and numb. The shades are pulled cause I'm hoping to fall asleep again for a few more minutes. During these rough morning hours, sleep is my refuge.
Even though it's just on the other side of this wall, the life-filled beauty of Spring feels like it's a million miles away. My head can’t fall deep enough into this pillow and my dozing dreams are strange and distorted. Somehow though, I'm getting used to the pattern of this illness and I'm fairly certain that this too shall pass. I notice that I haven't cried yet today, but with just the turn of a thought, I could easily go down the path of despair. This morning though, I avoid the tears and I choose a more subtle version of sadness. It feels more like disappointment. There are so many things I'd rather be doing with my morning than contemplating the inner life in a darkened room with ME/CFS.
I'd rather be playing the recorder. Yesterday, I picked up my tenor recorder and I made a little melody in a minor key. With a bit of added vibrato, I brought that wooden flute to life. I was reminded of my long standing wish to be a recorder player. On top of everything else -- a writer, a podcaster, a gardener and all the rest of it -- I want to be a recorder player. I want to spend my days practicing the recorder and I want to become a master. Whether I'm playing the soprano, the alto, the tenor or the bass, I want to play in a recorder ensemble that meets two times a week. I'm longing for that sense of togetherness with other musicians. I love the subtle nods back and forth that say, "begin now... here's the tempo... breathe now...and end... now." I love the unison breaths, the consonant phrases and the commitment to the blend that keep us connected. I used to play the tenor in a recorder ensemble at the UU Church of Kent. We called ourselves the "The Peace Pipers." At the moment, I'm feeling inspired to get that group back together again, except, of course, for the fact that I'm short on breath and lying in a dark room with barely enough stamina to pull myself out of this bed.
I'd rather be playing the handpan, the metal drum downstairs that looks a heck of a lot like a UFO. I love the heavenly mellow sound of flesh on steel resonating in a hollow chamber of air. I love the clinks and the bongs, the dings and the dongs. I love the full body sport that is handpan playing -- supple arms reaching for every corner of the dome shaped surface. I watch those videos on YouTube of the great players and I want so badly to be one of them. I've got a handpan with a D Kurd scale and I'm pretty good at it, but I'm not great. I'm stuck on this one particular alternating left-right pattern and I'm having a hard time breaking free of it. I know the one thing that would change that though. It's practice -- aerobic practice of the paradiddles, a term that the drummers among you will recognize. I'm not actually sure what a paradiddle is but I know if I practiced them, I'd be a much better handpan player. I want to spend the day practicing the handpan. I'm done staring in the dark at this "Healing is Possible" painting on my wall.
While I'm on the subject, I'd rather be making plans to go to the "Steel Mountain Handpan Festival" in Colorado. I have a feeling that I'd fit in real well there. I imagine me and a bunch of long haired spiritual types jamming together on our musical domes. Whether we're high right now or we used to get high back in the 90's, it's the music that would lift us off the ground. It's the repetitive rhythms and the drones, the slaps and the overtones that would lift us together into the sky. Heck with all this talk, I'm ready to book a flight right now for the August 24th festival, except, of course, for the fact that I'm mostly housebound. And due to the risk of post-exhertional malaise, I can't really play the handpan for more than a few minutes a day. Damn this illness.
It’s late afternoon now on this June Thursday and I’m spending time with the rhododendrons. The previous owners planted these shrubs many years ago and today, their pink blooms are exploding in the sunshine. I’ve spent the last several hours breathing fresh air and writing this fresh episode of “Living in a Body.” As expected, my symptoms eased up a bit after lunch and I’ve been able to enjoy the flow of the creative process out here on the porch. I’m interested in the change of thinking that comes with the changing severity of my symptoms. With more ease in my breath and less pain in my legs, I’m much more able to enjoy my life. I’m much more able to put it all into perspective.
As I sit here crafting these words, I’m thinking of all the people with this illness who are fully bed-bound. I’m thinking of all those who can’t work, can’t eat and can’t speak. I’m thinking of those who spend all day, every day in a darkened room and who don’t have the creative outlets that I enjoy so bountifully. I’m thinking of those that need full time care but don’t have the ability to pay for it. I’m thinking of people like Nevra (see above) who’s living with a severe version of this illness in Pakistan. Apparently, she’s had a very difficult time getting help because of the health care system, the male dominated culture, and abuse in her household. There are millions of stories of people with ME/CFS who have it much worse than I do. With that perspective, I’m feeling grateful.
Actually, I’ve got it pretty good. At this point, except for a couple part-time helpers, I’m fully independent. Thanks to a hit song and an incredibly successful GoFundMe campaign last year, I have money in the bank. I got to play the recorder today. I got to play the handpan today. I even got to sit on my porch and entertain 6000 people who were viewing my TikTok live at one point. I have a beautiful porch and some very comfortable porch furniture. I’m so grateful to have this publication that gives me a deadline to meet. My day has been full of crafting words for your reading and listening enjoyment. The rhododendrons are in full bloom, the sun is shining and reality is all in how you look at it. It’s all in your perspective. Enjoy.
Thank you so much for reading this. Thank you for listening. As I say every week, enjoy living in that body of yours. It’s not gonna be around forever and time is moving faster than we ever expected. All the best to you this week. I’m sending love. See you next time. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Looking for the Good
It's the end of May and the fringe tree is in full bloom. Her official name is Chionanthus Virginicus but we just call her Vergie. Her drooping clusters of fringe-like, creamy white petals hang delicately from her young sturdy branches. Her spear shaped leaves are fresh and new. I watched those leaves being born just three weeks ago. She loves to soak in the morning sun that shines through the tall trees that hang over the garage. I planted Virgie last year at this time and I've been looking forward to this moment ever since, the second Spring of her awakening. Her bloom won't last forever though, so I go out there every day to soak in the beauty of late May in Ohio. This fringe tree that I planted last year right behind the peach tree is one of the good things in my life. Today, I'm looking for the good. I hope you'll join me.
The weather's been beautiful here in Ohio lately. It's been 70 degrees and mostly sunny. I'm grateful to have just enough wellness to ride into town on my three wheel electric scooter to roam among the living. People in town regularly comment on how good I look and how glad they are to see me out and about. Little do they know the invisible challenges of living in a body with ME/CFS. I actually snapped at someone the other day who generously commented that they were glad to see me doing so much better. Even though I am doing “better,” I was blunt and I made it clear that this is an invisible illness and you have no way to tell whether I'm doing better or not. Dear friend, if you're reading this, I apologize for my impatience. I apologize for my bluntness. I was having a rough moment. But that's for another episode. Today, I'm looking for the good.
My scooter's name is Melba. She's quiet and fast. On a fairly regular basis, she attracts comments from passers-by. They say, "Damn, that's a cool bike." I don't usually correct them, but just to be clear, Melba's a trike -- three glorious wheels of battery powered mobility. I haven't actually timed her, but on a downhill slope, I think she could easily reach about 30 miles an hour. It may be a little bit dangerous to ride that fast, but I'm living with moderately severe chronic illness and I deserve a little thrill in life. Besides, I always wear a helmet. Except for the energy it requires to sit upright on the seat, riding this scooter is almost effortless. Melba glides along in smooth silence and she never complains. I'm so grateful for the mobility. Melba was one of the best purchases I've ever made. She's definitely one of the good things in my life.
On Saturday mornings, after a short visit to the Haymaker Farmer's Market, I almost always scoot over to the Kent Natural Foods Co-op. Even when I don't really need anything, I like to make it one of my stops. I go there to be among familiar people. I go there for the comforting natural food store smell. I go there in search of healthy stalks of organic celery for my morning habit of juicing. I go there to see my cousin, Amie. On Saturdays, she's usually working behind the counter. That's just the way it is at the Kent Natural Foods store. Everybody's somebody's cousin. It's like a big extended natural foods family. The KNF is another one of the good things in my life.
A couple weeks ago, I asked Amie if she had listened to my Substack yet. Her response gave me pause to think. She said, "No. Not yet. Is this another sad one?" I can't quote her exactly, but the point was well taken. A significant percentage of my posts have been sad. Some of my favorite episodes have had titles like "I Love Crying," "Devastated" and "A Puddle of Sadness." Upon first telling, there's no argument. It's a sad story. A sweet guy named Hal, who was having the best years of his life gets brought down by a devastating illness that's hard to pronounce, m yalgic ensephalo-f****n'-myelitis. It turns out there's no known cause and no known treatment and the illness is barely even recognized by the medical community. But, I digress. Today, I'm in search of the treasure that lies beneath the surface of things. Today, I'm looking for the good.
Thanks to this illness. I have become a practicing and prolific writer. If I hadn't been housebound and bed-based, there's no way that I would've had the patience and the persistence to write this publication. I never would've come up with the title or found the material for the writing. I never would have spent hundreds of hours in bed writing online with the London Writer’s Salon. Out of the pain and the struggle, something beautiful was born -- fifty-nine heart felt episodes of “Living in a Body.”
Just for today, I'm looking for the good. All day long, in every moment, around every corner, my eyes are wide open. My thoughts lean into the underlying beauty of all that exists. My heart beats in tune with each delight and my spirit swells with each sensation. With a smile on my lips and a spring in my step, I refuse the path of despair. Instead, I seek the most precious gem, the gem of this moment with all it’s complexity. Today, I take actions of gratitude and I say, "Thank you." My only job is to be grateful.
My friend Joshua offers a unique perspective that's been helpful to me. Our phone conversations remind me that I can choose to see the circumstances of my life as my curriculum. Whether I like it or not, these challenges are my course of study. The illness is a radical opportunity to learn and to grow. As I write this today, my own poetry inspires me to embrace the challenge of this journey, but the grueling reality of chronic illness pulls me in a different direction. Day after day, I face the isolation, the limitations and the dis-ease of living in this body. My thoughts are easily swayed toward self-pity, loneliness and despair. I mean, couldn't a nice guy like me have been given a softer course of study. I never would have chosen this crash course in radical acceptance, pacing, personal essay and basic survival. But without this illness, I never would've become the man that I am today... or the man that I'm yet to be.
Several months ago, I invited a few guys over for a Wednesday night session of presence-ing. We did 30 minutes of speaking our experience of the present moment and then we went around the circle to share honestly about our lives. It was so enjoyable that we've been meeting every Wednesday for months now. These Wednesday night presence-ing sessions are the highlight of my week. On Wednesday nights, I’m not alone and I don't feel lonely. The connection is palpable. Week after week, we recognize that the work we're doing is profound. We often comment about how this might be the purpose of life - this connecting, this sharing, this being present with each other. This Wednesday night experiment with these few men has been so powerful and so meaningful to me that I'm conjuring up ways to expand to include more men. I wouldn't mind doing this two or three nights a week. It's been the greatest antidote to the loneliness and the isolation of being a man and living with chronic illness. This Wednesday night group of guys is definitely one of the good things in my life.
Today, I’m looking for the good. Won’t you join me? What would it be like to spend a whole day in gratitude. What if the good is everywhere and all we have to do is to open to that possibility? It sure doesn’t come naturally to me. I’ve got to work real hard at it. It’s easy for me to write it down, but to live it is a whole different story. I guess today’s an other day to practice. Enjoy.
Thank you so much for reading. Thank you listening. I really appreciate you. As always, have a beautiful Saturday… or whatever day it is. Enjoy living in that body of yours. It’s not gonna be around forever. Take advantage of it now and I’ll try to do the same. Sending love. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Once again, this week’s episode includes lots of music and melody. I recommend clicking the play button above for the full audio experience. (11 minute listen) Enjoy!
Melody Maker, Part Two
I'm hungry for validation. In fact, I'm starving. On the outside, I'm a 57 year old man with a little bit of white showing up in his beard, but on the inside, I'm a little boy crying out for attention. "Please. Somebody love me. Somebody tell me that I'm amazing." But it seems that no matter how many red hearts you leave in the comments, it's never enough. That's how hungry I am. I'm starving.
Here’s a 40 second melody called, “The Long Road.” I’m playing the handpan and the chromatic harmonica.
I've been a performer my whole life. Ever since my first performance of Amazing Grace on the harmonica in my Great Aunt Robina's living room, the stage has had me hooked. I thrive on the immediate feedback of an audience. I love the applause, the laughter, the silence and the connection. As a teaching artist, I used to walk into an elementary school and within minutes, I'd have the whole gymnasium eating out of the palm of my hands. On the edge of their seats, the students would be hanging on every spin of the banakula, every twang of the jaw harp and every big chord of the melodious khaen. The sense of power was palpable. The exchange of energy was magical. Now, I'm mostly housebound. I'm living alone with a nasty version of an illness called ME/CFS and I've lost my stage. There's no crowd of fourth graders circling around me, no sound system, no microphone and no wild applause. It's just me and my phone shooting videos on Instagram, selfies on Facebook and a podcast on Substack. It's lonely here in the digital world of content creation and I'm starving for connection. I'm hungry for validation.
This one’s called “Melancholic May.” I’m playing the chromatic harmonica on top of a great pianist that I found on Instagram, Andrea Vanzo.
The primary dispenser of the approval that I crave is the notification screen on my phone. The apps dole out micro hits of dopamine that feel good in the moment, but they never satisfy. The reward pathways of my brain say, "Oo. I like that," but it's never enough. I'm the mouse in the psychology lab that keeps coming back for more. Saturday after Saturday, I hungrily await the next comment on my Substack. On Sunday, I crave the likes and the shares on my weekly Facebook post. Then on Monday, I'm hankering for views on my daily TikTok videos. At my level of life experience, you'd think that I'd be past this by now, but the social media giants have me pegged. They’ve tapped into my human weakness. They seem to know me better than I know myself.
I'm not sure why I'm telling you all this. Maybe you can relate or maybe you already knew this about me. But still, I'm a little embarrassed to say it out loud. I'd prefer to be sharing with you how satisfied I am with my life as an artist. I'd rather be letting you know that I’ve managed to overcome the childish craving for external validation. But here I am lying in this bed with a love-sized hole in a child-sized psyche. I know that the only love that satiates is the love that comes from within, but I'm still searching in all the external places. I recognize that contentment is an inside job, but I'm still hungry for praise. Your praise for my work feels good in the moment, but I realize that I need something greater. So, where does a hungry man like me find the true source of satisfaction? I guess I'm here to tell you that I'm still working on it. And I’ve got a long way to go.
This one’s called “A Smooth Ride.” I’m playing the RAV drum and two chromatic harmonicas in harmony.
Lately, I've been finding great enjoyment making music in my home. I'm so grateful that I still have the strength to put a chromatic harmonica to my lips and to create something beautiful. I love producing new melodies and I treasure the flow of the creative process. It's usually the highlight of my day. When I'm working out a melody, I'm not thinking about the ringing in my ears or the aching in my legs or the weakness in my constitution. When I’m in the flow, the pain falls off to the side and the joy keeps expanding. That’s the part I like — being deeply engaged in the moment. Some friends and I call this “top line behavior.” It’s the opposite of “bottom line behavior.” These are the things that nourish my soul and make me glad that I’m alive. Solving the puzzle of a new melody is one of the great joys of my life.
But I recognize that the creative process is more than just the joy and the flow. It includes the doubt in times that are fallow. It includes the longing and the waiting. It encompasses the endless wrestling of the words and the fighting of the phrase. It offers the glorious satisfaction of listening to the final product on repeat and then finally, it calls for the letting go. That's the part I struggle with the most — the release. When the melody is done, when the episode is finished, I send it into the world and then I face the great unknown. Hungrily, I await your digital response while I question whether I’ll ever create again. Many times, I’ve faced this void and it terrifies me every time. I’m left with the ringing in my ears, the brokenness in my body and old habits of negative thinking that are hard to die. Often, after the work is done, when I should be celebrating, I feel afraid and alone. I wonder if this is all part of the creative process. I wonder if this is all part of living in a body.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Just so you know. I’m not gonna guilt you into clicking the comment button below to tell me how beautiful my melodies are. I'm not here to convince you to click that ‘like’ button at the top of the page. And I'm not writing this in hopes that you'll upgrade to a paid subscription to support my validation habit. You’re not responsible for satisfying my hunger. Really, I'm just here to connect. It occurs to me that more than validation, I'm seeking connection. I wish we could do this face to face like we used to around the piano or in a big circle in my backyard. I'd love to sing with you, to dance with you and to hear what it's like for you to live in that body of yours. Are you able to create for the sake of creating? Do you crave the likes, the follows and the comments? Can you relate to the hunger? After you've made something beautiful, are you afraid to face the great unknown? I hope you'll share it with me. I’m interested.
Thank you so much for being here. I so appreciate you. Enjoy living in that body of yours. It’s not gonna be around forever. And don’t forget to breathe and remember to drink lots of water. Apparently these bodies of ours are 50-70% water. Can you believe it? We’re just like big walking aquariums. All the best to you this week. Thank you so much for listening to my melodies. Sending love. ❤️ Hal
Follow me on Instagram. (219k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (69k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. This week’s episode is all about music and melody so I recommend consuming it with the podcast version. Please click the play button above for the full audio experience. Thanks!
Melody Maker, Part 1
I'm a melody maker. I love making melodies. I come alive when I'm crafting the ups and the downs on the steps of the scale. I thrive when I'm sculpting the skips and the jumps and the rise and the fall. I enjoy shaping phrases 'till they feel just right easing out of my mouth, into the air and down to the bottom of my songwriting soul. There's nothing like a good melody -- one of those that glides off the strings of these baritone vocal cords and tells the story even more honestly than if I were preaching it from a pulpit. I never thought about it like this before, but melody is my first language. Long before the words, for me, there was melody.
Some melodies have come into being with almost no effort. It's as if they lived on some other plane long before I sang them into the aural world. These are the ones that are so eternal that it's hard to imagine a time before they existed. Other melodies came out with a joyous battle. How many times have I sung the same few words over and over again, wrestling the melody into existence, bringing the song into its truest form?
I remember pulling into my mom and dad's driveway back in 2006 when one classic melody burst into melodious existence. It came just in time to help Kent, Ohio celebrate it’s bicentennial. It goes:
Kent, Ohio. I know that I'm home when I'm-oh-in Kent, Ohio.Time keeps rollin' and our town keeps growing oh-my-oh. Kent, Ohio. Oh my oh, Kent, Ohio
The song's called "That's Kent." Margot Milcetich and I took this simple chorus and turned it into an epic song about the history of this town. Someday, somebody should make this the official song of Kent. Every third grader in town should be singing the chorus out on the playground. I guess I've got some work to do.
One of the things I like best about Kent, Ohio is the Kent Natural Foods Co-op. Truly, it's the best store in town. With Jexo and Amie, Mary Jane and Elizabeth and the rest of the crew running the show, it feels like a home away from home. It's certainly more expensive to shop at the KNF, but I feel so good spending my money there. My quality of life would be greatly diminished if that store didn't exist. Seriously, when I ride just a few blocks on my scooter to spend cash at the co-op, it feels like I'm handing money over to my own family. Buying locally like that, I've never had buyer’s remorse, even when I bought that asparagus the other day for $7.99. The KNF is one of the best perks of living in Kent and it's just about a half mile from my kitchen.
Last night, I was at the co-op picking up some raw sauerkraut, Japanese sweet potatoes, local kale and basmati rice when I noticed something for the first time. As I was exiting the back of the store, I saw a copy of my song, "A Garden of Hope" hanging there on the wall. Back in 2017, I wrote it for the grand reopening of the store after it went through major renovations. I was so delighted to discover that someone had thought to frame and hang the sheet music for all the shoppers to see. Except for the challenging syncopation, I think it’s a real singable one. You might even call this one a jingle. It started as an ear worm that went into my head and got stuck there for days. It goes like this:
Kent Natural Foods Co-op is where I do most o' my shopping every night I'm stopping at the Kent Natural Foods.Good food, good folk, good livin' in Kent Ohio. We're plantin' a garden of hope right here at the Kent Natural Foods.
I love the big vowels in the song, the way the high note lands on the “oo” of “foods” and the “o” of “most.” I like the big O’s in “folk,” and “hope” and I love the rhyme that happens with “shoppin’” and “stoppin’.” Isn’t it cool the way lyrics and melody work together in a song? This melody probably wouldn’t be all that much without the rhyme scheme and the shape of the words.
Up until Thursday afternoon, this was another example of a song that I’d never properly recorded and made available. I'm a good melody maker but I'm not so good at the publishing and distributing part of the process. But I’m grateful to report that this episode inspired me to produce the long awaited recording of this song. Almost six years later, “A Garden of Hope” is now available for your streaming pleasure. I truly hope you’ll give it a listen.
I once made a melody that incorporates the 88 counties of Ohio in geographical order. It’s called, “My State, Ohio.” One late evening in 2003, I picked up a pair of banakulas, pulled out a map of Ohio and sang right down the eastern side of the state. I sang:
Ashtabula, Trumbull, Mahoning and Columbiana, Jefferson, Belmont and Monroe.
I spent two weeks writing this puzzle of a song and I recall the process being deeply satisfying. It’s not an easy song to learn but believe it or not, it's fun to sing. Of all my songs, this is the one that WAPS in Akron has chosen to be on their regular rotation. It's such a natural melody. It was born directly from the spoken word.
When I used to teach songwriting in schools, I enjoyed asking students, "What's the difference between singing and speaking." Of course, I got many different answers, but “My State, Ohio” brings an interesting perspective to the question. If you listen to me speaking the names of these counties, you can almost hear the melody in the words. Listen:
“Ashtabula, Trumbull, Mahoning and Columbiana, Jefferson, Belmont and Monroe.”
Now listen to me sing it:
“Ashtabula, Trumbull, Mahoning and Columbiana, Jefferson, Belmont and Monroe.”
The melody follows the natural rise and fall of the spoken word. It somehow blurs the line between singing and speaking. The song continues in geographical order from the northeast corner all the way to the southwest corner of the state with the county Brown. “My State, Ohio” is one of the great accomplishments of my melody making career. Every fourth grader in Ohio should be singing this song in the hallways. Damn. I guess there's more work to be done.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Living with this illness, It’s been a long time since I’ve written a song. ME/CFS has effected my lungs and my spirit in such a way that I don’t find it very enjoyable to sing. My breath gets exhausted so easily. I’m still able to make melodies on the harmonica, though. You’ll hear some of those next week in Melody Maker, part 2. Meanwhile, I’ve got a whole library of songs that still needs to be properly shared with the world. It overwhelms me to think about how much work there is to be done: the recordings, the notation, the piano accompaniments, the CD’s, the songbooks, the online store. Living with the reality of ME/CFS, there’s a real chance that I may never get around to doing all these things. I guess I’ll keep taking it one day at a time — just doing the next right action. The fact that I was able to produce such a cool version of “A Garden of Hope” this afternoon fills me with a lot of gratitude. But whether or not I have the strength to create, these are the days to be satisfied with the simple things. Having spent a lifetime as a human “creating,” I guess it’s time to settle in and learn to be a human “being.” I’m glad you’re joining me on the journey.
Let's continue this conversation next week with Episode 58. I’ve got some cool harmonica riffs to share with you. In the meantime, I hope you have a great week. Enjoy living in that body of yours. I encourage you to make a little melody and maybe even do a little dance. I’ll try to do the same. Alright?
Hey, guess what! I took my own advice and I just made a little song. It’s just four lines long and it’s called “Dancin’ Through the Day.” The melody came quickly, but the word crafting took at least fifty sing throughs, maybe even a hundred. The process was a wrestling match that I haven't experienced in a long time and I loved it. It took all afternoon. Unless you request some verses, I’m pretty sure the song is done now. So, let’s sing — you and me — together — living in these bodies — dancing in these lives — loving, breathing and feeling. C’mon. Sing with me. Here we go.
“Make a little melody and do a little dance. Oh Lord, we’ll find our way. Move it in your body and take a little chance. Sing now, we’re dancin’ through the day.”
See you next week. Sending love. Hal
Follow me on Instagram. (219k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (69k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to Living in a Body. We celebrate reaching 1000 subscribers this week! I send a special welcome to every single one of you. I hope you’ll introduce yourself in the comments. I’d love to get to i you better. Thanks for being here. H
Stuck
I'm stuck. In fact, I've been stuck for weeks. I'm so stuck that I'm calling this entire episode, "Stuck." I have a feeling there's so much to say, but I'm having a hell-of-a-hard-time getting anything to come out onto the page. The words are trapped behind a wall of illness, perfectionism and brain fog. Today though, I'm making a valiant effort to spit something out into the world. I want to let you know that I'm still here.
I'm sending out this smoke signal, this message-in-a-bottle, this secret love note in hopes that it reaches you. As I lie here alone in my long adjustable bed in this big square house, I crave connection. I'm yearning for contact. I'm calling out to let you know that under challenging circumstances, I’m surviving. One day at a time, I'm battling to come to terms with this illness, I'm struggling with the creative process and I'm fighting against my tendency to hide in this symptom-ridden body. If all this sounds rather dramatic, trust me. It is.
About 10 days ago, I experienced yet another crash. On top of all the preceding crashes, this has been a particularly rough one. It’s crazy the way this illness behaves. Overnight, a whole new set of symptoms can settle in. It’s like a switch gets flipped and there’s no way to know if it’s ever gonna get flipped back. I don’t want to overuse the word devastated, but I’m devastated. It’s so difficult to know what keeps making my symptoms worse. This morning, my ears are ringing louder than usual, my breathing is labored, my lungs are burning, my legs are aching and my brain is foggy and numb. ME/CFS has managed to convince this six foot body of flesh that it needs to be working constantly behind the scenes. My legs feel as if they've been running all night long but all I did was go downstairs to make myself breakfast. It seems that this illness punishes me for doing the things I love.
Adjusting to this new baseline, there are so many layers of grief. I'm reminded once again how ME/CFS robs me of my sense of self and sabotages my ability to create. As I stare at the same four walls and the same blank page, I spit out line after line that essentially reads "I have nothing left to say and if I did, I don’t have the strength to say it." It's a struggle to craft words in a way that doesn't sound like a big chronic illness pile of self-pity. While it's true that these symptoms can paint my thinking very dark, the forever pleasant midwesterner in me is cautious of spewing too much negativity into the world. So I remain stuck. However, as I face these paragraphs this morning, after weeks of silence, in all my broken humanness, I'm reaching out to find you, my friend, my fellow traveler. Thank you for being here.
If I weren't so stuck, I'd tell you all about my trip to New York. Even though it seems like a long time ago now, I'd tell you how Cameron and I got the car all packed up with a bed in the hatch and a fully loaded rack out the back. When I pushed the power button to launch the trip, I was met with silence. The car battery was dead. It was a disappointing launch, but fortunately, my mom came right over to save the day and she jumped the battery. Cameron Mack was my helper and my driver for about 10 days on this unlikely roadtrip and he did a great job. I hope to tell you more about the trip another time when I'm not so damn stuck.
I will share with you though that one of the highlights of the trip was sitting with Hallie on her Brooklyn rooftop overlooking blue skies and the big city. I took it real slow up the six flights of stairs as Hallie kept encouraging me to sit down and rest as much as I needed. Hallie’s cool. She understands the seriousness of ME/CFS and “post-exertional malaise." She cares about her old dad. Hallie Walker in New York is a stunning site to see. I got to watch her perform at a venue called 54 Below. I was feeling good that night. In fact, I was on top of the world, gathered with old friends and family to see my daughter sing her heart out. I wish you could have been there. I was a very proud dad.
If I weren't so stuck, I'd tell you about the Hal-a-pa-loo-za concert that happened on April 21. It was an incredible once-in-a-lifetime event honoring my 25 years of service at the UU Church of Kent. It's the kind of thing that most people only get to experience after they die, but I got it while I'm still living. I'm grateful for that. I guess living with ME/CFS is a kind of death. The person that I was is no longer and there's no way to know if he's ever coming back. At the “pa-loo-za,” I got to perform two songs on a beautifully lit stage and I absolutely loved it. For a few minutes, I experienced the on-stage-Hal that I remember so well. It's amazing how connecting with an audience makes me come alive. Once again, I was reminded how much skill I have for presenting a song. It's such a damn shame that the world of stages has, at least temporarily, lost the one and only Hal Walker. I mean, that guy knew how to hold an audience. lol.
I entered the venue on that Friday night and immediately realized that some of my favorite people in the world were there to support me. As I hugged my old singing companion Kathy Ke, all the feelings rose up in me and I broke down in tears. In fact, I'm crying right now thinking about it. I was so honored to be in the company of so many people that I care about. And I was deeply touched by the expressions of care that all those people showed toward me.
Matt Watroba was the perfect host. He started the night off with an "Om-like" sing-along of Amazing Grace. The congregation that I trained for 25 years jumped right in and harmonized through the whole thing. The music went on all night long and I sat in my wheelchair and basked in the glory. Even Rev. Melissa Carvill-Zeimer made a surprise appearance by video. She and I worked together beautifully for more than 10 years and it touched me to the core as I listened to her remember those times. I went home with a big box of handwritten letters from the congregation and the daunting task of facing the fact that the end of an era has come. I'm no longer the music director of the UU Church of Kent.
But wait! Hold on! I almost forgot to tell you. I was honored with the title of Music Director Emeritus. I was even given a name tag to prove it. It was a remarkable night that I’ll never forget. I send big thanks to Diana Watt, Susanna Smart and everybody else who made the event such a big success. Thank you!
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Well, I’m glad to have momentarily broken through the wall of my stuck-ness to reach out to you today. “Living in a Body” has given me a great sense of purpose since I started it 56 episodes ago. I trust that there will more to come, but I have to ask for your patience as I navigate these difficult waters. I sure do love the creative process when it’s flowing, but the flow just hasn’t been there lately. I suppose the fallow times are equally as important in the process. Who knows. Maybe the next episode will be titled, “Flow.” I hope so.
All the best to you on this Saturday. It’s May and there’s lots of hope around the corner. If it’s your birthday this month… Happy Birthday! Don’t forget to enjoy living in that body of yours. Take advantage of whatever health you’ve got and breathe it all in. I’ll try to do the same. Sending love. See you next time. Hal
Follow me on Instagram. (219k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (69k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hello! Welcome to “Living in a Body.” Thank you for being here. Press play above for the podcast version with original music. (10 min) BTW. I need just 50 more subscribers to reach a thousand. :) Please share. Hal
Musical Spoons
Guess what?! A new musical instrument has just come in to my life. I can't wait to tell you about it.
When it comes to musical instruments entering my world, I've been very fortunate. I don't know what it is, but it seems that there's something about me that attracts the unordinary -- musical instruments that are hidden from the view of most modern day Americans. I guess the truth is that I've always kept an eye out for weird, cool sounding noise makers. Over and over again, decade after decade, I just keep getting lucky.
It all started in the summer between third and fourth grade when Grandad introduced me to the ancient hand whistle. I practiced all summer long and then one afternoon, sitting on the toilet at David Paulson's house on Akron Blvd in Kent, I was able to make a sound. Who would have thought that some 50 years later, my most popular video on YouTube, with almost 5 million views would be "How to Play the Ancient Hand Whistle." Who would have thought that I'd someday have the opportunity to pass on this musical tradition to a huge worldwide audience.
In 2002, I was in exactly the right spot at exactly the right moment when I saw my old friend drummer Joe walking down the street with a couple pairs of banakulas in his hands. Banakulas (known by many other names, including asalato, televi, cas cas and kashaka) became a kind of trademark for me as a teaching artist. They were my claim to fame as I traveled from school to school all over Ohio. Students and I made thousands of pairs of this awesome rhythm maker. I’ll never forget the sound of a hundred fourth graders shaking, packing and spinning their banakulas in unison while singing, “Banakula, Banakula, Bana ku-ku-ku-ka kula, Banakula! Ku ku! Banakula. Ku Ku!”
In 2007, I stumbled across the melodious khaen. I made a serendipitous visit to my friend David Badagnani who just happened to be house sitting at Dr. Terry Miller's place. Over in the corner was a four foot instrument made of bamboo pipes held together by a wooden mouthpiece. I picked that thing up, blew a few chords and my life was changed forever. Little did I know that it would be the khaen that would transform my music career at just the right moment. Months before being struck down by a nasty version of Myalgic Encephelo-f****n’-myelitis, the khaen gifted me with Low Key Gliding -- a song that has been my main source of income for the last two years.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
In 2010, I was at our annual UU Summer Institute at Kenyon College when for the first time, I heard the sound of the handpan, also known as the "hang drum." At the time, there was only one maker of this instrument in the world and if you didn't know somebody who knew that maker, it was almost impossible to get ahold of one. I filed the metal drum into the back of my brain and I hoped that someday I would have one of my own. Today, I'm grateful to say that there’s one sitting under the piano in my living room. The handpan and its cousin, the Rav Drum are sources of great joy in my limited musical life these days.
I could go on and on with these stories of serendipity — of being at the right place at the right time. In fact, my house is a museum of musical instruments and each one has a story to tell of how it showed up in my life. I keep thinking that there are no more musical instruments left to discover and then, out of the blue, another one shows up. Appropriately to the era, this one showed up on Facebook.
Just this week, I discovered some wooden musical spoons made by a father and son team in Canada. The business is called Heritage Musical Spoons. I usually ignore the ads on Facebook, but when these things came across my feed, I sensed that they were something very special. Handcrafted with Canadian Maple Wood from the forests of northern Quebec, these spoons are gorgeous. Unlike metal spoons, Heritage wooden spoons produce a rich, full, almost hollow and popping sound. The design was inspired by the traditional French musical spoons, which are attached at the handle. They're much easier to play than unattached metal spoons. I bought three of them - the blue, the black and the "old-fashioned." It took me a few minutes to learn the basic moves but I stuck with it and now it’s starting to feel like real music. I had some friends over the other night and we discovered how great the spoons sound when they're playing in unison. I'm excited to find out what else is possible. I can't wait to have you over to play in my musical spoons choir. Here... listen to this.
I'm heading out to New York this afternoon. With Cameron as my driver, I'm off to see my daughter and her fiancé in Brooklyn. They’ll both be performing at 54 Below on Monday night. (Buy your ticket here) I can’t wait to see the show. Speaking of spoons, this trip is definitely gonna be a stretch. There’s no such thing as a vacation from ME/CFS. There’s only pacing. I’ve done everything that I can do to plan for a low exertion adventure, an adventure that stays within my “spoons.” As long as I keep my knees bent, the back of my car is laid out like a big comfortable bed. I’m feeling well prepared. A few days ago, I made an extensive packing list and I took my time pulling it all together. With a rack hanging off the back of my car, I’ll be taking advantage of every square inch of the extra luggage space.
I'm gonna be carrying the musical spoons, a guitar, two Rav drums, two khaens, a couple ocarinas and a whole bunch of harmonicas with me. Call me crazy, but I’m picturing jam sessions at every rest area along the way and maybe even some music in the New York City subway system. Of course, I’ll probably spend most of the time in bed at the Airbnb, but I’m hoping for a least one beautiful day of music making in some New York City park somewhere. I’ll be sure to capture some video footage to share with you.
It’s been a long time since I’ve been to the “Big Apple,” but it’s one of my favorite places to go. I love the smells and the crowds and all the life that’s packed into those few square miles. We’ll be arriving on Sunday morning. I’ll have my wheelchair, my assistant and a ground floor apartment waiting for this old body of mine when I get there. If you’d like to follow along on the trip, check out the Living in a Body “chat” at this link.
Have a great Saturday everybody! Thank you so much for being here. I really appreciate you. Enjoy living in that body of yours. Be grateful for the health that you have… whatever health it is. Seriously! It’s not gonna be there forever. Oh, and by the way… I love you. ❤️ Hal
Follow me on Instagram. (222k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to Living in a Body. Today’s episode is mostly original music. I encourage you to listen to the PODCAST version by clicking the PLAY button above. It’s a 13 minute listen. Enjoy!
This Week in Music
Hi, I'm Hal. Welcome.
This is the Living in a Body podcast. I think today is episode 54. It's 4:39 on Friday afternoon and I haven't written an episode yet. So for the first time ever, I'm gonna wing it. We’ll see what comes out of my mouth here.
I just hate the idea of a Saturday coming at 8:08 am and not putting anything out into the world. Living with chronic illness, this is a big part of what defines me — this showing up every Saturday and connecting with you guys, the “Living in a Body” community. So anyway, welcome.
I haven't done any writing for Substack this week, but I have been writing my fourth step in my 12 step program. You know, the fourth step is a searching and fearless moral inventory. As someone who spent a big part of my life having had no moral compass, I've got a whole life of things to write about. But I'm not going to tell you about them here. Maybe some other time. But just know that I've been busy writing my fourth step. It’s all part of the process of healing and recovery I guess. I'm glad to be involved in that process.
But I showed up to this episode with no notes. And I don't think of myself as someone who's very good on my toes with words. I do much better on the page where I get to wordsmith all day long. So we're gonna just see how this goes, alright (laughs out loud) You may hear alot of nervous laughter. (Nervous laughter) We'll see…
The title of this episode is “This Week in Music.” And even though I haven't done very much creative writing, I've been doing some very creative work on Tiktok and Instagram that I'm really happy with and I'd like to share it with you today . I got out the guitar this week! I broke out the guitar after months and months. And I put my soft little fingers up against those metal strings. And it hurt but I made some beautiful music.
This one is the acoustic guitar with the RAV drum, which is a metal drum. I also got out the chromatic harmonica, which I am in love with. So listen, we're gonna call this… it's Untitled, but it's “Guitar Rav Harmonica.” We'll come up with a better title in a minute, here listen to this…
That one's in the key of A major. It's fun playing a chromatic harmonica in the key of A major. Every key of the chromatic has a different shape to it. And I wasn't very familiar with playing in the key of A major so it was quite satisfying to learn that key and learn the shapes of that key.
So yeah, it's been a challenging week. My symptoms have been fairly severe. Mornings have been particularly difficult living in this body. But then usually in the mid afternoon, I get a little bit of relief. And I've been using that time to make music and I'm really grateful. I love the creative process. You may know that about me already. But in many ways the creative process is saving me. You know, it gets me out of myself. It gets me out of my head and thinking about all my all my struggles. When I have the wellness and the strength to create… you know, when I'm in the flow of creating music or anything, it makes a big difference. I'm so grateful to have that. I was talking with a friend who said he is not sure how to use his free time. And that is not one of my problems. Of all my problems, the way to use my free time is not one of them and I'm very grateful.
This next piece is another little jam on the hand pan, which is another type of metal drum. And this is with the khaen playing a cool melody in octaves. This is called “Pan Khaen Jam.” I think I need some better titles for this. Maybe I'll work on that later. Here we go. Listen to this…
All right.
It's a shame these pieces don't go any further than just Instagram and Tiktok. I should make finished products. I'm really good at 30 second or 40 second little clips. I'm not as good at putting out the whole album. Someday after my book is written, the whole album will be written.
You know, I've been a diatonic harmonica player my whole life. It wasn't till I met Al Smith about 10 years ago that I started playing chromatic. But this next piece is the diatonic, you'll hear this bluesy sort of melody on top of the RAV drum. This one is called “Rav Harmonica.” Damn, I need better names! Here we go “RAV Harmonica.”
Hey, guess what? I'm planning a trip to New York City.
Yep, I got myself a driver. Cameron is going to drive me and I'm turning the whole back of my car into a bed. We’re stopping halfway in State College, Pennsylvania for a motel, a Motel Six. I'm going to carry a wheelchair and a suitcase and a cooler on the back of my car. I'll show you a little picture right here. It's gonna be awesome.
And then we're getting an Airbnb in Bedford-Stuyvesant, where I will be just a couple blocks away from my daughter Hallie and spending probably most of the time in bed. I think my sister Johanna may be joining us. And we're there to see the show that Hallie’s producing “54 Below Sings Tik Tok.” If you're in New York City, or even if you're not in New York City, it’s time to take a trip. I'll meet you there. It's Monday night, March the 27th.
So, this is the last one I'm going to share with you. I just made this this morning. I'm super happy with it. It's the “Pan Jam.” Ha. I promise by this time next year, I’ll have better titles for you. This is a Pan Jam. And it's got some more chromatic harmonica. And this one was really satisfying to make. Its handpan and two chromatics. Here, listen to this.
All right, that was cool. Hey, everyone, thank you so much for being here. Thanks for listening. I'm so glad that I have this platform to put this music out in the world. And who knows, maybe someday there will be a finished product where you can listen to the album.
But for now, easy does it. Easy does it, Hal. I'm living with moderately severe chronic illness. And this creative process can either save me or it can destroy me. So with “easy does it,” taking it easy, a little bit every day, we can do this creativity without destroying ourselves. (Laughs out loud)
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Oh, I had so many more interesting, deep thoughts. Actually, I don't have deep thoughts! I rarely have deep thoughts. Sometimes. I wish I had deep thoughts more often. But my deepest thoughts come in the float tank when I'm floating. And that's where I'm gonna head now before dinner.
It's 5:18. That was a whole episode in less than an hour. And I'm gonna go head into the float tank. Thanks for being here. Thanks so much for joining me. It's Living in a Body.
Spread the word. Hopefully, I'll be back next week. And I'll look for you in New York City, by the way. All right? I love you. For some reason, I'm in a good mood tonight. You know, I'm feeling good. I'm not always like this. I spend a lot of my time crying in bed. I don't want this to end. I want it to keep going on and tell you more.
I'll just tell you the highlight of my week. The highlight of my week is getting together with a few friends on Wednesday evenings we do something called “presencing.” And maybe I'll tell you what presencing is next week. Maybe that'll be a whole episode on presencing. But it's my favorite. It's my favorite activity. Of all the activities in the world, I think presencing is one of my favorite. And I can't wait to tell you about it. So maybe look forward to that next week. In the meantime, thank you.
Enjoy living in that body yours today. Happy Saturday. Happy week to you. All right.
Bye bye.
Follow me on Instagram. (222k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to Living in a Body. I extend a special welcome to all the new subscribers. After a year of producing this publication, I’m glad to report that we’re approaching 1000 subscribers. Please consider sharing this episode with a friend. Press play above for podcast version with original piano music.
The Story of a Morning
It's 11:00 in the morning on a Tuesday and I just took a one minute cold shower. I was hoping that the cold water would shock my adrenals just enough to jump start me into this day. For at least a few minutes, it worked. As I dried off with a clean towel, combed my hair and put my clothes back on, I felt almost like a normal person. Five minutes later, I'm back in bed fighting the urge to turn off the light, shut down the laptop and curl back under the covers. I wish I could adequately describe to you what it feels like to live in this body. If you could understand, maybe I wouldn't feel so ashamed for still being in bed at 11:00 in the morning.
For most of the afternoon yesterday, I was dreaming of a solo roadtrip to see Hallie's show in New York City on March 27. She's co-producing and co-starring in a show called "Studio 54 Sings TikTok." I'd do anything to be there to support my daughter. And if she'd allow me, I'd love to perform a quick rendition of “Low Key Gliding,” the song that made me famous on TikTok's "for you" page. It's a crazy idea, but I'm determined to make the trip happen. The plan is that I would turn the back of my Prius into a bed and I'd lie down at every rest area between here and Brooklyn. I'd stay in as many motels along the way as was necessary and I'd hire my friend Julie to do all the food prep and the packing for the trip. The vision that I'm having is a romantic picture of me on the road, wheelchair in tow. Finally, after all these months, I'd be free -- free of this house, free of this bed and free to go where the spirit leads me. Somehow, yesterday's version of the story also included a certain degree of freedom from this illness.
But then this morning arrived. It was one more rude awakening into the reality of living in this body. In this new normal of the last couple months, mornings are the worst. On most days, I wake up startled and shaking. Once again, I have to come to terms with the fact that chronic illness is real and that this really is my life. The alarm goes off at the break of dawn, but I barely come alive till almost noon. For a task master like myself, getting through these unproductive, symptom-heavy morning hours is especially challenging. It's 11 am and after my second nap of the day, it takes everything I've got just to pull my head off the pillow one more time. My grandfather's protestant ethic has me convinced that there's something terribly wrong with this scenario. The ringing in my ears is a constant reminder that the health and freedom for which I long is not an option for me today. Here's the story of a morning.
I've learned from experience that morning begins at bedtime the night before. I'll admit that I stayed up a little too late last night. After cleaning the kitchen and making a couple good connections on the phone, I "treated" myself to another online game of Go and some mindless scrolling on TikTok. I finally turned off the light at about 10:30 and I fell asleep quickly. I was tired. I'm glad to say that I slept all the way through the night. It's not unusual for me to have vivid dreams where my health is back to the way it used to be. I had one last night. I can't remember it now, but it was one of those where I was riding my bike or playing frisbee or going on a long hike or making tender love. Whatever it was, my alarm went off as it always does at 6:25 am.
The alarm signifies that the wondrous escape of sleep is over and it's time to face another day. Due to the long haul nature of this illness, my first thoughts are often some version of dread or grief or disbelief. But whether I feel like it or not, I bounce out of bed and glide downstairs to squeeze myself eight ounces of organic celery juice. I always have a good stock of celery in the fridge. My Champion juicer is from the 1990's but it still gets the job done. I appreciate the familiar routine of making celery juice, but the whole time that I'm in the kitchen, I can't wait to go upstairs and get back under those covers.
It's a difficult complex of symptoms to describe. It's not like a cold and it's not like the flu. There's no sore throat and there's no fever. In fact, I look perfectly healthy and I’m not in pain. It's the queasy seasick feeling in my stomach. It's the ringing in my ears and the vague density in my brain. It's the buzzing numbness throughout my body and the weakness in my limbs. It's the deep fatigue that accompanies the heavy breathing, as if I just ran up three flights of stairs. My body doesn't seem to understand that there's no reason to be working so hard. All I'm doing is lying here with my eyes closed on a quiet Tuesday morning. Some days, I whisper tearfully to God to calm me through these uncomfortable sensations.
Speaking of God, when I'm back in bed, I sip my celery juice and I read the Twenty Four Hours a Day book. Today, the prayer for the day reads, "I pray that I may live the way God wants me to live. I pray that I may get into the stream of goodness in the world." Day after day, the reading doesn't offer the escape that I'm wishing it did. It only offers reality and a change of perspective. To be honest, I still get a little twisted in my head around the mention of God, but I've got nowhere else to turn and I'm hungrier than ever for the spiritual solution. At the same time however, I have a strong urge to run the opposite direction toward some immediate relief. This morning, I got deep into a child's pose and I cried out to the mystery to break through my closed thinking and to wake me up into the goodness of this moment. Living in this body, it takes discipline and practice to see that goodness. I know it's just one thought away, but it often feels way out of reach.
One of my morning practices is the daily game of Wordle. Today, after 6 wrong guesses, I failed the challenge. The correct answer was “RIPER.” Just so you know, I usually get it in three or four guesses. After questioning whether “RIPER” is actually a word, I was momentarily disappointed for my loss. But there will always be tomorrow's Wordle. I'm grateful that the New York Times only lets you play once a day. This daily ritual is a special part of my waking up.
Most mornings, I have a fifteen minute call with my twelve step sponsor and then a call with my sponsee. This is my early morning opportunity to break out of isolation and to practice rigorous honesty with my fellow humans. I don't always look forward to the calls cause I'm usually not in the mood for rigorous honesty that early in the morning. But I always feel better afterwards. It's amazing what a little human connection can do to take the focus off of myself and all my big complaints.
After 30 minutes of sleepy meditation, I head back to the kitchen for the first of two small morning meals. My first breakfast is 1 1/2 ounces of oatmeal, a fruit, a tablespoon of olive oil and 6 ounces of soy milk. My food plan is written down the night before and weighed and measured precisely on a digital scale so I don't ever have to think about it. I'm grateful for this system that gives me freedom from my long history of insanity around coffee and muffins in the morning. (See Ep. 33 — The Muffin Man)
By now, it's about 8:00 and it's time to log in for Writer's Hour at the London Writers' Salon. Matt and Parul, who founded the online community at the beginning of the pandemic, have created something truly wonderful. Four times a day, writers from all around the world meet on Zoom to sit in silence and practice the craft of writing. The 8:00 hour is a tough one for me, but I can usually write for a few minutes before dropping my head back onto the pillow. I've met some great people at LWS and even when I'm crashed, it's comforting to have the glow of all those writers accompanying me through one of the tougher hours of the day.
The naps between 8 and 11 are intense. They're filled with dozing off, weird half-awake dreams, startled wake ups and tearful reality checks. At some point, I have my second breakfast of four ounces of protein and a fruit. And then at 10:50, it's time for the cold shower. I usually join the second Writers Hour at 11 when I’m a little bit more alive. As you know, I love the creative process. I’m so grateful for the days when I’m able to flow with the writing. It’s truly been a lifesaver.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
In my vision for the New York City trip, I'm willing to accept that I need to spend the mornings in bed. I imagine I’ll do all the traveling in the afternoon. The people that I've told about the trip have encouraged me to do a mini trip as a trial run. It's probably a good idea. But to tell you the truth, I have no interest in getting in the car today and driving any further than the Giant Eagle in Stow-Kent. I just don't have it in me. Maybe another cold shower would help.
For the last couple months, I've been settling into this new normal and I don't particularly like it. With the previous normal, the mornings weren't as difficult as they are now. In spite of the daunting challenge though, I've been able to adjust to each new normal that comes along. I gotta hand it to myself. I'm incredibly resilient. But with every shift in symptoms comes a new layer of grief and loss. I think back to just a few months ago with longing and I think about the future with trepidation, wondering what this illness will bring next. Maybe the Spring will bring some relief. Maybe I'll see you on the road in Pennsylvania. Maybe we can meet up at Hallie’s show at Studio 54. For today, my scooter Melba and I will be looking for you on the bike paths along the Cuyahoga River. After about 2 pm, that is.
Have a great week. Thank you so much for being here. It means a lot to me. Don’t forget. Enjoy living in that body of yours. Whatever you got… it’s not gonna be there forever, so take advantage of it today. I’ll try to do the same. I love you. No, for real. I do. ❤️ Hal
Follow me on Instagram. (219k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” Today’s episode is best consumed through the audio podcast. I encourage you to tap the play button above for the full effect of the episode. (11 min. listen) Thanks for being here! Hal
The Working Series
I love being in the flow of the creative process. When I'm flowing with creativity, I get some relief from the physical discomfort and the negative thinking that come along with chronic illness. Of all the things that have helped me survive the most challenging couple years of my life, creativity is at the top of the list. For the moments that I have the strength and the wellness to create, I'm so grateful.
One of the places that I regularly find inspiration is on TikTok. Since Jan 1, 2020, with only a few breaks, I've posted a short musical creation on that app almost every single day. Creating on Tiktok helps to remind me that in spite of the devastation of this illness, at the core, I’m still the musician that I’ve always been. Even when I'm only making music for two or three minutes in an afternoon to capture a 20 second video, those are a couple of the best minutes of my day. For that short amount of time, when I'm able to create some magic in the musical realm, I get a momentary smile in my heart and also on my face. For this attention starved divo, creating short videos on TikTok and Instagram somehow helps to validate my existence.
Of course, social media plays a complicated role in my life. On the one hand, it inspires me to create. On the other hand, it lures me into the trap of an unquenchable thirst for serotonin that gets doled out by the notifications on my phone. As if more likes, follows and comments would ever be enough to fill that God-sized hole in me, I continually check my notifications looking for more. I use social media as a way to numb momentarily the discomfort of living in this body. I'll leave that discussion for another day, though. Today, I want to talk about creativity.
In case you're not aware, TikTok is an amazing modern day audio/video phenomenon. When I use it wisely, it's proven to be an awesome source of creativity, connection and inspiration. Coming from a musician who specializes in talent shows, Tik Tok is the ultimate never-ending talent show. It's the creative platform that I'd been waiting for my whole life. TikTok has totally transformed my musical career. With the help of this app, I've put my music into the ears of young people around the world at a rate that I never before imagined possible. And I’m glad to say that after three years of scrolling, I'm still finding inspiration on my "for you" page.
In the last few weeks, I keep coming across videos of workers creating rhythms with their tools. Carpentry, masonry and blacksmithing tools are the unlikely source of musical syncopation and driving rhythm. On top of the rhythmical foundation that I'm finding in these videos, I've been adding my own musical twist. I've created a series of four short videos that I'll share with you now. I call it the "The Working Series."
The first is a railroad blues. The original video shows three railroad workers who are taking turns driving a railroad spike into the ground. One swing at a time they’re getting the work done in a very musical way. With the help of Ableton Live, Final Cut Pro and an assortment of Apple products, I performed some technical magic. On top of those driving sledgehammer rhythms, I added some sweet bluesy harmonica.
The harmonica playing that you'll hear is the kind of stuff I've been playing for almost 40 years. These are the same riffs I used to play when I wandered the streets of Chicago while avoiding my studies at Northwestern. These days, playing these riffs comes as naturally as speaking. In this video, you'll hear the sounds of my own personal language born out of a long history of carrying a harmonica in my side pocket.
I've come up with a great system for creating these collaborative “duet” videos. I won't share with you the 25 step process in this post, but I will emphasize how much I love a good system. Developed over months and years of trial and error, it's a multi-step process of uploading, quantizing, videoing, mixing, editing and mastering. Because of the system that I've developed, I can produce one of these videos in a very short amount of time with very little exertion of energy. For a creative like me living with ME/CFS, there's nothing like a good efficient system.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
The next one is called "Hammering Harmonica." The original video pictures a very skilled carpenter who's driving nail after nail down the line of a large wooden structure. I took that metronomic rhythm and I added some Eastern European style harmonica playing in the key of G minor.
The first time that I ever played a minor keyed harmonica was in college. I was a student at Northwestern and I spent my entire junior year with a mad crush on a woman named Ellen who was a senior. I lived on the third floor and she lived on the second at 1901 Sherman Avenue in Evanston. For the whole year, I gave her the most amazingly passionate one-on-one harmonica lessons and we became the best of friends. But all the while, I yearned for her affection. She was unavailable. She had a cool, long haired, guitar playing boyfriend who drove a little red Honda Civic. It panged me to watch out the window as he would park there on Sherman Avenue and head into her apartment. At the end of the year, she graduated and moved into the Chicago. But before she left, she gifted me with a minor keyed harmonica. I've been playing these Lee Oskar minor harmonicas ever since. Thanks Ellen! In this video, you'll hear that Eastern European sound as I accompany the driving rhythms of a skilled carpenter.
The next one is called "Jamming with a Stonemason." The original video pictures a stone mason who's hammering divits into a slab of stone to make a beautiful geometric design. For this one, I added the rhythmical playing of a metal tongue drum called a RAV drum. Interestingly, the RAV company sent me this drum free of charge because I'm an "influencer" on TikTok and Instagram. It was quite a nice gift to receive. Of course, once I fell in love with the drum that they sent, I bought two more of them with my own money. They got me hooked. I'm grateful for how easy it to make beautiful music with these drums. They're tuned in a way that makes it almost impossible to play a wrong sounding note. I enjoy putting them on the laps of the visitors that come to my house for some easy but satisfying music making.
The last in the series is called "Forging Khaen Metal." The original video is a couple of blacksmiths forging some red hot metal into a pick axe. The rhythm they create is bright, sharp and driving. For this one, I'm playing an original melody on the khaen, a mouth organ from Laos and NE Thailand. The melody that I play is laid out so nicely on the instrument. With years of practices, this melody and these octaves come so naturally to my fingers. Enjoy.
There we have it. “The Working Series.” What’s your favorite? I hope you’ll tell me in the comments.
I love the creative process, especially when I'm in the flow. And I guess I never know when the flow will strike. Sometimes it happens after I've already given up hope. Sometimes I question whether it will ever happen again. Sometimes it comes out of a mindless scroll through my “for you” page on TikTok. I look forward to seeing what I stumble over next. And I look forward to all the unknown places that inspire me to express that creative spirit within.
Thank you everybody. Thanks so much for listening and for reading. Go out there and put a little creativity into your day today and please, let me know how it goes. I hope you have a great week. Remember, enjoy living in that body of yours! It's not gonna be around forever. Alright? OK. Bye Bye. ❤️ Hal
Follow me on Instagram. (219k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” I extend a special welcome to all the new sunscribers this week. I hope you’ll introduce yourself in the comments. Please click the play button above to listen to the podcast version which is accompanied by original music. Thank you!
A Puddle of Sadness
It's been a year now that I've been writing this publication. Somehow, week after week, for an entire year, I've successfully come up with a personal essay to share with you on Saturday mornings at 8:08 am EST. To be honest, I don't know how I did it.
Most mornings, I sit in bed with my laptop on my lap and I face the familiar discomfort of chronic illness and a seeming void of creativity. One of my symptoms is a difficult-to-describe numbness in my brain that reaches out to my limbs and makes me want to curl back under the covers. I struggle to believe that this body holds any more good stories to tell.
So my practice is to show up to the page and simply write words. I call them my morning pages. I write down all the random garbage that comes into my head and I don't stop until three pages are filled. Here's a short highly revised example from yesterday.
"I don't like February. I don't like Valentine’s Day and I don't like February. And just to be clear, I don't like people who like February. And I don't like people who like Valentine's Day — those people who always have love in their heart and a smile on their face. I guess I used to be one of those people. I used to like Valentine's Day but I'm done with it and I have nothing else to write but my dislike of the holiday. You'd think that after all this writing practice, I would have become much better with words. You'd think I'd have more deep thoughts and profound realizations, but all I have is complaints about February. I just feel so sick and my arms are weak and my ears are ringing and I'm all alone with my cat in this big house and I can’t think of anything to write. I guess I could try to write the dark night of the soul story or the more hopeful handshake story or the more positive paper route story, but it all seems way too difficult. I'm tired and I'm sick and I just wanna curl back under the covers. Ugh. My brain feels numb."
As you can probably tell, I've been in a bit of a funk lately. I know that I've been through funks before, but this one feels funkier. It feels so permanently February, like a never ending Valentine's Day. The truth is that I've been sad. Some nights I cry myself to sleep and sometimes I wake up in the morning and I'm still crying. Some mornings, I can't think of anything to write but words about sadness.
This is what happened yesterday. It was fifty degrees out and I took my three wheel scooter on the mile loop that follows the Cuyahoga River into town and connects up with West Main Street where I ride up the hill past the library on my way home. This time, I stopped at John Brown's Tannery Park to sit on top of a picnic table that overlooks the river. I sat down and the whole world turned gray. Everything was gray, inside and out. I felt like I was melting into the gray. I sat there hunched over on the picnic table and I wept. I bawled like a middle aged man hunched over on a picnic table in February, like it was already Valentine's Day. And while I wept, I felt a deep sense of loss and loneliness, like I was all alone in the world and my life has become just a puddle of sadness. When I was done crying, I headed toward West Main and the feelings eventually passed, like they usually do. Before I headed up the hill, I did some wheelies in that parking lot across from the library.
I'm trying to be grateful for the courage to feel. They say that it’s better to feel than to hide from the feelings. As I look back, I'm inspired to give thanks to the picnic table for supporting me as I wept. I want to hold that guy sitting there on the table and whisper in his ear that this too shall pass. This February will pass. These feelings will pass. Stay with it, Hal. Spring is coming. Hang in there and I'll see you on the other side.
Thank you so much for reading. Thank you for listening. Enjoy living in that body of yours today. I love you. ❤️ Hal
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” Please click the Play button above to hear the podcast version of this publication. I hope you’ll share this episode with someone who might like it. Special thanks to my friend, Brad Bolton for the photos of the chime choir. Thank you!
The Tone Chimers
It’s Thursday afternoon and I’ve been lying here in bed thinking about the past. I’m longing for a few of the things that I miss the most. The memories seem so close and so vivid that it feels like I could just reach out and touch them. But no matter how hard I try, the past stays right where it is and I just can’t get it to come back. It’s like there’s a brick wall separating me from the way things used to be. There’s no getting around it. I suppose this is a human experience that happens with aging, illness and change, but for me, it all seems so premature. I wasn’t done yet. I was right in the middle of it all and I was having such a good time. To be honest, I think I was just entering my prime. There was still so much more music to be made, so many more rehearsals to be had, so many more recordings to be recorded. Just to be clear, I’m tired of being in this house and I wanna get back to my life.
Then the people say, “but Hal, this is your life.” I know. Here I am in the great unfolding. I just hadn’t expected it to unfold quite like this. But, I appreciate the reminder. I’ve got two hands and ten fingers. I’ve got my sight and my taste and my touch. Last night, a few guy friends came over and we shared intimately with each other over candlelight. Today, I’ve had the strength to write for several hours. There’s food in the fridge, peace in the town and I live in a big mansion on a hill that keeps me warm on these cold February days. All day long, the winter sun has been shining through my south facing windows. And on top of all that, I’m blowing up on Instagram like never before right now. But still… I miss the way things used to be. I miss my tone chime family.
One of the great joys in my working life was directing the tone chime choir at the UU Church of Kent. Throughout our years of making music together, we consistently had at least 15 solid members representing a wide range of ages. We called ourselves "The Tone Chimers." From the time we purchased the chimes in 2015 up until the pandemic, we rehearsed every Wednesday afternoon at 5 pm. With all that practicing, we became a top notch ensemble and we had a whole lot of fun along the way. Every Spring, we'd play at the annual “Fiesta of Bells” that happened at the First Christian Church in Stow. As far as I'm concerned, we were the best group there. Compared to the other bell choirs with their shiny handbells, their special handbell gloves and their coordinated handbell T-shirts, we were a ragtag bunch. We didn't have matching outfits, but we did have heart and soul. We had musicianship, originality and personality. On top of that, we had a wonderful sense of humor. It wasn't a competition, but I always joked with my choir that we got first place. I was so proud of that tone chime choir. Really, we were like a family. I miss it so much.
A tone chime is a metal rod with a rubber hammer that makes a warm and hollow sound when you strike it. For a church music program, purchasing chimes is the economical option when you can't afford real handbells. I actually prefer the sound of the chimes. Mellower than handbells, tone chimes sound a little bit like a vibraphone in a jazz ensemble. For the relatively small space of our sanctuary, tone chimes were ideal. We owned a full set of five octaves. I loved composing for chimes. Those were some good times sitting at my computer, high on herbal tea and turning my piano compositions into pieces for the Tone Chimers. Maybe after I finish writing this book, I’ll get back to composing for chime choirs.
Each member of a tone chime choir plays an equally essential role in the ensemble. From the warmth of the large, low-pitched chimes to the shimmer of the small high-pitched chimes, a tone chime choir comes together like a giant-sized music box. With at least one chime in each hand, each player is responsible for striking the sound exactly when their note comes along in the score. If a player misses their moment, the music doesn't stop. Like the rotating cylinder of a music box, time just keeps spinning along. In our rehearsals, I remember a gradual transformation from the clunkiest of jalopies to a well oiled machine. Playing in a chime choir is a great exercise in teamwork, concentration and pure joy. It's one of the funnest musical activities that I've ever participated in. After months of rehearsal, when it all came together, the sound of the Tone Chimers was a cooperative thing of real beauty.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
With all the effort we put into our chiming, I’m sorry to say that we never got around to making recordings of our work. I’m lying here just imagining all the great music that was lost in the passage of time. Today, I’ll share a very early rendition of a piece I wrote called, “Chronic Joy.” This video was shot soon after we purchased the chimes. I brought the whole set to our Summer Institute at Oberlin College and I pulled together a chime choir for the week. The video gives just a little taste of what a tone chime choir sounds like. If I could go back, while I was busy soaking it all in, I’d remember to get out my phone and record a few rehearsals. But alas, I’ll have to settle for the memories.
Thanks for being here everybody. Thank you for reading. Thank you for listening. I guess the moral of the story is to leave the past in the past and to live right here in this moment. We’ve got to hold these memories as a gift. Secondly, if you ever get a chance to be in a tone chime choir, be sure to sign up. Tell ‘em that Hal sent you. Have a great week. I love you and I miss you. Don’t forget to enjoy living in that body of yours. I’ll try to do the same. ❤️ Hal
Follow me on Instagram. (217k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. We’re celebrating ONE YEAR of “Living in a Body!” To listen to the podcast version of this publication, I hope you’ll click on the PLAY button above. Thanks for being here! Feel free to share. H
Telling My Story
The combination of the public writing life and life with chronic illness is not an easy one. I didn't choose it. I don't think anybody would. Certainly, I made choices along the way that brought me here, but it seems that these circumstances have chosen me. I guess you could say that I'm one of the lucky ones. Rendered more and more helpless over the course of the last couple years, I've been gifted with challenges and limitations that not everyone gets to face. 56 years old and living through a radical life change, this is the bonus life that I never before imagined. Who knows what kinds of good things could be waiting on the other side of it all.
The reality of my situation would be tragic if it weren't so utterly poetic. It occurs to me that I have a choice to let this reality destroy me or to let it be the greatest journey of my lifetime. Since it's not an option to go back to my glory years of 2019 and 2020 and since I really don't wanna die, today I'll choose the great journey. Happy New Year everybody. With all the blessings of 2023, I'm here to tell my story. Welcome.
In response to last week's conversation with Peggy Munson, I received a series of emails from a subscriber of this publication. Each of the subject lines were typed in all capital letters. The first read, "YOU ARE SUPPORTING ILLNESS." The body of the emails went on to say, "You and your podcast friend are self-limiting and promoting helplessness… You are confirming the hopelessness of your condition as unchangeable...You need to look to successful models and not confirmation of self limitation.... Listen to the hopeless tone of your last podcast and compare it to the MANY others online that have had promising experiences."
I have to admit that it's taken me a few days to process this series of emails. I'm still sorting it all out in my head. The ALL CAPS approach to the communication has been plaguing my serenity. I'm probably too sensitive, but I feel like the writer was shouting at me for having done something terribly wrong. But rather than letting it go, I've chosen to respond publicly. The emails bring up some interesting concepts that I'd like to explore. Especially as I celebrate a year of having produced this publication, I want to be clear about my vision for the writing. I want to be clear about what "Living in a Body" means to me.
My knee-jerk defensive reaction was to respond in all caps, "YOU HAVE NO IDEA WHAT YOU'RE TALKING ABOUT." I'm a writer and I'm here to tell my story. I'm not here to "promote" anything except honest telling of that story. Last week, I had the opportunity to share the story of my friend, Peggy Munson, a person for whom I care deeply. Peggy and I have each been living with a mystery illness for over 30 years. It's barely diagnosable. Except for the telling of our individual story, there's no proof that the illness even exists. It's a complex of weird symptoms that are equally as debilitating as they are difficult to put into words. Everyone's story is different and there are millions of people suffering. It's poorly named, "Chronic Fatigue Syndrome" or if you can pronounce it, “Myalgic Encephalomyelitis.” Nobody knows the cause and nobody knows the cure. Living with a severe version for over 30 years, Peggy Munson has survived the unimaginable and I have tremendous respect for her. It was an honor for me to share her voice here. My version of the illness has been less severe, but I've gotta hand it to myself. I'm facing this challenge with resilience, open mindedness and courage. The defensive part of me wants to announce, "YOU live in my body for one day, one week or one month and THEN tell me that my attitude needs to change."
If you've read the last 47 episodes, you'll see that hopelessness, grief and self-pity are certainly a part of my story, as is joy, gratitude, humor and possibility. My goal has been to remain truthful to the vulnerable complexity of my experience. One of the best things to come out of this devastating illness has been the discovery of my love of writing. When I'm engaged in the writing process, I find relief from what is frequently an agonizing experience of living in a body. When I'm writing these episodes, I experience purpose, meaning and great satisfaction. My hope is that you find little glimpses of your story in mine, or at least, that you find enjoyment in the sound of my sexy baritone voice on the podcast.
To be honest, I rolled my eyes at the inclusion of several Youtube links in the shouted series of emails. In one of them, Realan Agle is the person being interviewed. Apparently, she's experienced 100% recovery from ten years of being bedridden with ME/CFS. I have many questions but wow! I'm happy for her. Imagine that. A hundred percent recovery from whatever she was struggling with. I'd be happy with 20%. For 100%, I'd give away my house, everything I own and all the money in the bank. But would I click on a link that was sent by a shouting emailer? Yes. I did.
Realan is a beautiful woman who is positive and passionate about telling her story. Led by hard work, perseverance and an absolute refusal to give up, apparently Realan healed herself with diet, pacing and a change of attitude, nothing short of a miracle. I watched a bit of the YouTube video and I even clicked the link to her online course of recovery, but I've got to admit that I'm skeptical. Believe me, after 30 years of living with this illness, I've watched the promising videos. I've tried the miracle cures. I've paid the alternative practitioners. I've purchased the online healing courses. I've practiced the change of mindset. I sure would love a miracle, but my story is different than Realan's and "Living in a Body" is the platform that I use to write about it.
As you may know, my story includes a traumatic progression of the illness over the course of the last two years. During that time, I've experienced multiple sudden onsets of intensified symptoms that haven't gone away. Two years ago, I was just a super nice guy with mild symptoms enjoying the happiest years of my life. Then the s**t hit the fan. Today, on top of the illness itself, I'm dealing with the grief that comes with drastic life changes. Currently, I'm in the process of adjusting to the new normal that moved into my body about a month ago. I realize that fear and negativity don't help the healing process in any way, but my brain has good reason to be afraid. It's been a rough couple years.
The third and final email explains the sender's position quite well. "No illness is final. Every condition can be healed. It took Raelan many years of suffering and disability to heal completely. She's teaching others and has support groups that are not resigned to the belief that ME/CFS is really the final word. Why would anyone even attempt to heal if they believed it to be impossible? Raelan and many others are succeeding and you can too. Her website below lays out resources and videos on YouTube."
Raelan Agle's Website
After some time has passed, my imagined response to the emailer has softened and I've removed the capital letters. "I hear you. Thanks for sharing." It's true. The sender of the emails has some good points. I agree that the medical profession has very little to offer me. I'm making an effort to believe that healing is possible. In the case of ME/CFS, it's probably my attitude that has the greatest effect on the potential for healing and my experience of the illness. I like the idea that there really is no problem here. The only problem is my thinking. My job is to smile and take an interest in the journey.
Sir, you were right. But because I'm already working on the things she has to offer, I probably won't be signing up for Raelan's support group. Besides my writing, one of my main practices is the work of retraining my brain. It's a slow process and it's the hardest work I've ever done. On some days, I'm not convinced that I'm making any progress. I admit that under the circumstances, it's much easier to fall into despair and hopelessness. I hope to keep documenting the process here on "Living in a Body."
Since we're offering suggestions, my friend, I will offer one of my own. Next time, ease up on the blaming tone and lay off the ALL CAPS subject lines. Believe me, there's a much more effective way to get your point across. Anyway, I appreciate that you care enough to offer your ideas.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
As for all the rest of you... Thank you for your suggestions, but no, I'm not interested in CBD oil and I'm probably not gonna try the carnivore diet. I hate to disappoint you, but I probably won't be going 100% plant based either and to tell you the truth, the Medical Medium diet is just way too overwhelming for me to even wrap my brain around. I'm in basic survival mode over here. I'm grateful to say that I have a wonderful healthy food plan and a strong support system in place that's helping me through these wild times.
As for the writing, I'm here to speak my truth. It's the only thing that I have and I'm still in the process of discovering it. Every once in a while, I'll share someone else's story too. And when I do, I'll encourage them to tell their truth. That's my vision for "Living in a Body." Thank you so much for reading. Thank you for listening. I'm signing off for this week and I hope to back again next week. Have a wonderful Saturday. I miss you. I love you. See you next time. ❤️Hal
Follow me on Instagram. (214k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. This week marks the one year anniversary of the launch of “Living in a Body.” Yay! I’m glad you’re here. Please click the play button above to listen to the conversation between me and my friend, Peggy Munson.
Peggy and Hal
HalHi, I'm Hal and this is Living in a Body. And we're doing something called “Peggy and Hal.” Peggy Munson and I are having a conversation over the course of a month through voice memos. And maybe we'll just start by having Peggy introduce herself. Hey, Peggy, how's it going? Would you just tell us like about a minute or so about yourself or a couple minutes? And we'll go from there. All right, everyone, Peggy Munson… my friend. She's sort of my big sister in this illness. I think of her as my big sister in this illness. We’re sister and brother in ME/CFS. Hi, Peggy.
PeggyHi, Hal. Well, I'm the Peggy half of this Peggy and Hal endeavor. And I really liked the name of that. By the way, I think it's very retro and fun. I first wanted to point out that I'm actually more of your little sister, I think, based on our ages, but we could go with something like fraternal twins. Let's say that.
Anyway, my name is Peggy Munson, I grew up in central Illinois in a town called Normal. And I expected to have a pretty average life. But I was, as you know, felled by this illness of ME/CFS, with a sudden viral onset when I was 23 years old. Up until that point, I did have a fairly normal life, although Normal has its share of oddities and quirks as one would expect from a town called Normal. And my father was actually a well known local radio personality. So I was forced to talk like this from a very young age. I had to do or not had to, I enjoyed doing radio commercials when I was quite young. I also worked at my mom's health food store growing up. So I actually was exposed to a lot of kind of notions about healing and mind body medicine. And I really came of age believing strongly that I could conquer anything that happened to me, health wise. Boy, was I delusional, as you know.
So I became sick at 23. I was a student at Oberlin College, about to graduate, about to walk at my commencement. I actually had graduated previously, or like six months earlier. So I was about to walk at the Spring Commencement because I had graduated in December of that previous year. And boy was it a topsy turvy experience trying to walk at graduation. It was hellish, I was suffering the early effects of this bizarre virus that started my ME/CFS, much like it has now with a lot of long COVID people, except without the language without the understanding, without any comprehension of what it was like to have this level of illness. As you know, it takes a long time to find the words because the symptoms are so bizarre, so extreme, so unusual. So unlike anything you really could have imagined before you contracted this illness.
So it took me a while and I had studied creative writing and aspire to be a writer, which I actually ended up being able to do to some degree. I could never go to graduate school to get the MFA I'd hoped to get. I was just too sick. But I have managed to write and publish books in the time since getting sick over 30 years ago, which was 1992 is the year that I got sick. And I published them all from bed, written them off from bed edited from bed, I published a book called Stricken which is an anthology of MECFS writings. That was over 20 years ago. And I followed that up with a book of poetry called Pathogenesis, which largely deals with a struggle with this illness.
And, I mean, I don't even know how to encapsulate 30 years into, you know, two minutes. As you know, it's an extraordinarily difficult life to live. But I'm very grateful for how I was raised in terms of having grown up in Normal, Illinois, where often the most fun thing to do was to drive around in an old Volkswagen and to hang out in cornfields quite literally, or parking lots. So, if I hadn't become accustomed to finding the extraordinary in small moments, which I did, I think it would be much more psychologically difficult to endure what I do now. Unfortunately, I'm pretty estranged from my family at this point. They got to the point of being absolutely unable to cope with my level of illness, which happens to many ME/CFS patients. So I would love to have a brother and I'm more than grateful to have met you, Hal.
HalThanks for that, Peggy. Yeah, fraternal twin sounds good. I guess I was saying big sister just because I have so much respect for you and the way you have faced this illness for so long. I guess that's my next question is how do you do it? How do you survive? You know, it's like the greatest marathon. Not the greatest marathon, possibly the most terrifying marathon. It just doesn't end and I've recently taken a turn for the worse and facing just a day. I have to take it 15 minutes at a time. So what are the tricks? What are the tricks? What are the tools that you learned for surviving a day for thriving a month or surviving a year? I just need to know all the answers Peggy. Thanks.
PeggyHi, Hal, thank you for that question. I'm on the precipice of a crash right now. So I'm going to try to be as succinct as I can, but it's hard for me to not ramble. In thinking about the solutions, the tricks of dealing with this illness, I started thinking about that 12 Step expression H.A.L.T., which means hungry, angry, lonely, tired. You're supposed to self reflect on how each of these is impacting you before you take any rash action, or go down the rabbit hole of your own dark places in your head. And when I thought about that, I first thought well, we can eliminate the T because, you know, we're so bone crushingly exhaustingly fatigued, beyond imagination, that it doesn't even relate to the notion of tired, let's face it, and that's the back beat to our lives every day. So that one we can just cut off. And then I realized that then it spells H.A.L. So I was thinking about how this is like a corollary to the psychological challenge of dealing with this monotonous, devastating illness every day of our lives, right.
And hungry, you know, we just have this insatiable craving for our lives for life to be part of life. And that's the thing we're most restricted from. So for me, the address of that is number one, feeding yourself as much as possible with whatever gives you sustenance, whatever gives you that feeling and sensation of being alive. And I think we owe it to ourselves to care for ourselves in that way to indulge whatever it is that we can still do, or still enjoy. And it's just such an act of kindness. For me, at least, when I can give myself anything each day to feed that hunger. You know, which is not like a food hunger, really, I mean, sometimes it is. But usually, it's something else.
The other thing is, this illness gives us really two impossible choices. One of them is to live with unending and impossible deprivation, right? The second one is to push ourselves to do things that we really can't physically do. And then to experience this payback of extreme suffering and extreme worsening of symptoms. And over time, I've really learned that accepting the first one, accepting the deprivation and yet still trying to feed and sustain myself as much as possible on my own is actually the best way to prevent the second one, and one could call that pacing. But to me, it's really more intricate than that. It's more complicated. But it's also the act of kindness I give myself, because I know that when I go to those really dark places of this illness, it's because I'm in the second one, I've decided to push myself to do something or to experience something. And ultimately, the payback is not really worth it much of the time. So I just accept that I have to give up almost everything, which sounds terrible, but it is like the better of two terrible options for me.
In terms of angry, it's like we have this righteous anger and indignation. And then that turns to just grief and sorrow, just abject misery, you know, that we can ruminate on endlessly or at least I can. So the solution of that is really to, like push back against it, however possible. For me, and for you, a lot of that I think, is just doing a creative act, you know, doing something to transform that experience, or transform that anger in any way we can. And I find that to be a relief valve for a lot of that.
In terms of the loneliness, and the absolute isolation that we're forced to deal with, which is hellish. Of course. I was thinking about the advice given to a friend of mine when she lost her husband really way too young. And she was just dealing with this incredible loneliness. She missed his touch. She missed the companionship, of course. And so her therapist said to her, you just have to touch everything. You know, you have to offer somebody a hug on the street, you have to pet the dog, you have to touch a fence post and feel something and so that advice of just valuing it all the same and not making one thing so precious, to me is really helpful day to day. So I just try to really see every experience I get to have as of equal value, even if it's just looking out my window once a day and seeing nature or seeing something I can connect to, or having just one voicemail exchange with a person. I try to just see those all as being of equal value. And then I'm longing less for the things that I used to place a really high value on. So those are my pieces of advice and we'll call it H.A.L, for Hal. But my question for you Hal is what was the worst day or week or month of this illness that you can remember? What did it look like? And how is it different from today?
HalHi, Peggy. Well, to be honest, this last week has been, I think one of the hardest weeks ever. It's been really hard. My symptoms are very severe. It's different than it was a year ago. A year ago, I was in a very different place. But this is really scary and feels like my body has settled into this particular way that I'm not liking at all.
But I really appreciate the way you expressed yourself in that last post. It's really, really, you're very easy to listen to and interesting. I'm glad that I met you. I'm glad we've been exchanging these messages for like, over a year now. A year and a half, we've been exchanging these messages. Finally, we're going public with it though. Well, I think I'm going to keep my message short. And I've got one more question for you.
Peggy, I appreciate that you're able to let go of everything. I mean, that's so radical. I'm not. I haven't been willing to let go of everything I try. I push myself and try to hang on to as much as I can. And I may be experiencing the consequences of that right now. I don't feel like I'm over pushing, but I do things and it feels you know, emotionally good. I'm glad that I do them. But then, I just keep getting worse. So anyway, I'm just fascinated by that. Let go of everything. Don't do anything in order to keep the keep the beast at bay. Thanks, Peggy. And look forward to hearing more. Bye
PeggyHi Hal. Well I'm sorry to hear you're in the jaws of a beast right now. Oh, man, I'm going to be brief because I'm waiting to see if my power will go out tonight. It's windy and it's going to be about seven degrees. So I hope this storm that's currently sweeping across the country has not taken out your power. It really terrifies me and makes me feel so vulnerable as a disabled person. Partly because I almost died in an ice storm in 2008, which I've mentioned, but I, you know, I do talk about it a lot, actually. But it was a terrifying experience. And it just underscores you know, how vulnerable we really are as people who like, can't get out, can't take care of a lot of our own business. And just very scary.
So anyway, about post-exertional malaise and your crash right now. You know, I think a lot of guidance on post exertional malaise is is really terrible, that's out there. I notice that they almost never mention the fact that crashes can last like months or years or permanently… become permanent. They don't really capture the gravity of a crash for somebody with ME/CFS. And also, it seems rare that people mentioned the delay period, like the 24 to 48 hour delay before a crash starts sometimes, which can push you into this mindset where you get really adrenalinized, and then you think, you know, everything's fine, you're gonna outrun it. You know, this time, it's not going to be like every other time. And then you just hit the ground even harder and so awful.
So I think for me, like the dread is so high now. Because my crashes have just gotten worse and worse over time. And because I've had some really catastrophic perma-crashes, as my friend Nicole termed it, where I've just never recovered from certain things. Like I've never recovered from the last time I traveled to Illinois 23 years ago, and I've never been able to do it again. So things like that, you know, like, I just have learned that a crash can absolutely make me more disabled forever, which is a terrible thing. So yeah, I mean, it's very scary. I don't think people can really imagine that just the terror that a crash induces or knowing that you're like falling into a really bad crash induces. So I just hope it's quick. And I hope that you can pull out soon, and I hope you have your power on. Okay, bye.
HalHi, Peggy. Here I am again. Well, this qualifies definitely as the most difficult, most challenging Christmas ever. I can't believe how difficult it is. I spent most of the day by myself. My daughter was over in the morning and then I was on my own with this illness and mostly in bed. Actually, yesterday I got a little bit of relief, I was reading Hafiz. I was reading the book, “The Gift” by the ancient Sufi poet, Hafiz. And, for some reason, my symptoms just eased up a little bit and let me relax into that reading. I was grateful for that. But this morning, the day after Christmas, I'm just… my neurological symptoms are so intense. It's this crazy deep fog in my brain that doesn't allow me to do anything. I can't write anything. And it extends down to my whole body — this weak sort of void in my body. Anyway, Peggy, I am really having a rough time over here. So I'm going to pass it on to you to bring us a little bit of hope. All right. Merry Christmas. Bye.
PeggyHello Hal? Well I've been such a zombie for the past three days that I couldn't leave you a message. I hope that you're doing a little bit better. But man, this is brutal. It's brutal, how dangerous the holidays can be for us as people with M.E. I was thinking about this post-exertional brain fog period that I'm in thinking like, how do you describe the experience of not being able to describe the experience because there's like this weird meta thing that happens, right? Where we lose the ability of description, and poetic description, and being able to really convey what's happening in our bodies. And part of that is just that our brains are so heavily sabotaged by this illness. Not getting any blood flow, not getting any mitochondrial energy, whatever's going on. I mean, it's terrible, right?
Oh, man. So I hope you're feeling a little bit better Hal. My holiday was very mellow. But for me, you know, the worst thing is just having my, my brain get a little too excited, and my nervous system get a little too excited about basically anything. So celebration is so dangerous in that way. And I go into a state when I'm crashing, where I'm almost completely nonverbal and non communicative, as well as nonverbal. I’m nonverbal most of the time in my normal life, you know, I just have these little bursts where I can talk a little bit. But I'm one of those patients who has to really restrict that and can't do much of any communicating with people because it just does me in more than almost anything else, which absolutely sucks to the core. Because I'm a very social person. I think you are too.
I don't really love my own company. I mean, I do love my own company. You know, I'm learning to love my own company in the isolation but by and large, I would prefer other people's company. Not that my company is bad, it's actually very good. But you know, you know what I'm saying.
So, yes, the isolation is very hard to endure. The crash is even harder to endure. And I'm truly sorry you're having such a hard week. So I'm going to ask you as we approach the new year, what are you hoping for, for M.E. patients this year that is within reason. And what are you hoping for yourself this year? That is within reason.
Okay, Hal. Feel better bye
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
HalHi Peggy. Yeah, sorry I haven't been in touch. It's been a really challenging few weeks. My daughter became engaged on New Year's Eve though. On a Brooklyn apartment rooftop. Her boyfriend called me that afternoon and asked for my blessing. So that was a really nice highlight of the month. But I've just been in a funk, Peggy. Yeah, I've been in a funk. God it's been… I’m so ill and night in the mornings. I'm so ill. And then I get a little bit of relief, a little bit of relief in the late afternoon. But my mindset has just been really not good and very, very sad and very negative. And just anyway, here's the question I want to ask you. What does a typical day look like for you? I'll answer the question. Maybe myself too, but I'm really curious. I don't have a sense of what your typical day looks like. Lately for me, I get up I wake up way too early. And I feel very ill in the morning. Oh my god. And then right around 11 or 11:30 I sorta am able to get out of bed. Have some lunch.
See, I'm even just too tired, too exhausted to finish this voice memo. Anyway, I look forward to hearing from you. Thanks for checking in on me. All right, bye.
PeggyHi, Hal, it was really good to hear from you. And I'm sorry that you're still having such a rough time. But I'm very excited about hearing about your daughter getting engaged. That's really great news. And I wish her all the happiness in the world. And her fiance, and it's very, very sweet that he called to ask for your blessing, too. I love that.
So, how do I spend a day?
I started trying to leave you a message in the middle of the night because I was like, you know, the middle of the night is where the action really happens for me, because I'm like, lying awake, and just kind of trying to fall back asleep often, and my brain sort of wakes up, you know, then, but I still am not functional or anything.
So my days are really, like being in airplane mode or something, you know, Everything is just really downgraded. I have to really disconnect from all of the energy out there, you know, from people, places and things. And I just can't think very clearly, I mean, that's, you know, really one of my predominant symptoms is just, I'm in a state of drift in my brain, you know, often.
Yeah, I mean, on a good day, I get up and usually move to a different room in my house, that's not my bedroom. But in every room in my house, I have an immediate place to lie down. So like my house is like a series of beds, you know. And it's always been that way, the whole time I've had this illness even when I lived on a really small apartment, you know, I just literally had a mattress in my living room, there was like a very small living room and then you know, my bedroom, there was actually this one small other room that I had like another little teeny little futon. So that's been my whole thing is just bed to bed to bed. And then in the summer, I can go bed to bed to bed to outdoors on my deck where I have an antigravity chair. So I'm like, you know, that's my outdoor bed. I also now actually have an outdoor like big bench that's down in my garden. So if I can get down there, then I have this big bench to lay down on and it's really nice.
So that's my day, it's a bed hopping sort of experience. And a lot of drifting in my brain. I really have next to no social contact, except for with my caregiver. And that is generally nonverbal most of the time, like I'm writing notes or texting or whatever else.
So, yeah, I mean, I'm just lying down quite a lot. So how about you Hal. My question for you, I keep thinking of like, you know, what keeps me going and part is that I still imagine myself being well again, in the future, even though it seems totally improbable by now. You know, it may never happen in my lifetime, but I'm gonna be hugely disappointed if I don't get to live before I die.
I’m wondering if you do that and also what does that look like for you? You know, what are the like the top five things that you would immediately do if you got better.
HalThe top five things that I would have immediately do if I were healthy. Geez, it wouldn't, it wouldn't be much. I would go outside and walk that mile loop that I love walking, I would go to a yoga class I would ride my scooter over to see my mom and I would give my mom a big hug and say, Mom, I'm better, I feel better. And then I would come home and I would skip up and down the stairs. And I would play some music, I'd practice the piano, practice the khaen for like, five hours today. And then I would plan a trip in my car to see my daughter. And we would spend the day in New York City and I would play the khaen in Greenwich Village and Washington Square and see how many people recognize me from Tik Tok. And my daughter and I would walk all over New York City. And then I would drive down to Florida to see a couple of friends and drive out to California to see a couple of friends. That's what I would do. I would just be on a constant road trip. I would sell my house. No, I'm not going to sell my house. I want my house here. But basically, I would just do all the normal little things in life. But instead, here I am in bed. And I'm actually going out with a couple of friends tonight to dinner, a couple of male friends. And it's it's gonna be hard because I'm right at the verge, right at the edge of whether or not this makes sense to be doing. But I figure I have to eat so I might bring ear plugs so the noise isn't too loud. Anyway, thanks, Peggy. Nice talking with you. Bye.
PeggyHi Hal well my five things would be quite a bit like yours actually, there's a lot of overlap here. But first and foremost, I would just like to experience a normal day, just a full day of energy like, packed full of the things that I used to do before I got sick. So, I would take a really long bike ride, I still have my bike from before I got sick, but I have not been able to do this in over 30 years. So I’d just take off, you know, and ride and ride and ride until I was exhausted. But normal exhausted, you know. And then I would have like a delicious lunch somewhere and meet some friends and have some wonderful food and just enjoy being alive, like visit some nature spots, go into some stores, go to a library, all those things. I just miss everything.
Probably go to a live show of some kind. Like I would probably go to a reading or something. Although I would love to see some live music too. But a poetry reading would be great. Just anything.
And then after that one full, wonderful day, I would get the hell out of Massachusetts, where I've been trapped for almost 20 years because I've been unable to travel or move. And I would take off in an RV and just go revisit all of the places in the US that I had positive experiences with before I got sick. So I would definitely stop in Ohio and say hello. Because as you know, I went to Oberlin College, and I used to pass through Ohio all the time, and be in Ohio. And it's right on the way to my hometown in Illinois, where I would go and visit old friends and go see my grandmother's grave and my aunt's grave. And all the people who've passed in this time that I haven't been able to get home even for funerals or anything else, which sounds dark, but I don't even mean it that way. Like I would just really enjoy being there and having that connection.
The rest of my family basically treats me like I'm dead now. So they would be completely surprised if they saw me walking around. They all live there. So then I would go out west just like you and I'd see some friends in California and like Pacific Northwest and other places. And then I'd go like places I've never been, you know, I travel around the world places I never got to go.
I'd love to study some field that I never studied before. You know, I never really got to have a career because I got sick so young. And I was always pursuing artsy things. So it'd be interesting to just dive right into like a medical career or something. I've spent so many years studying my own illness and do something that helped other people. That would be really cool. So, yeah, I just want to like be out in nature and see beautiful things and I don't know, ride a horse, whatever. So, so much, so much life that I would love to experience still.
Oh man, I hope we get there Hal and I hope you're doing a little bit better. And I'm going to toss it over to you for the next question. Okay, bye bye.
HalHey, Peggy. So I'm thinking we should wrap this conversation up maybe on some sort of hopeful note. Oh, it's so hard. I just want to say it's so hard. This is the hardest thing I've ever done surviving this. The combination of this illness and heartbreak and loneliness and recovery from addiction — all these things just like it's so raw. I’m so raw and so scared but someday I hope to meet you, Peggy. I really hope that we get to meet in person. That's got to happen. I'd be tempted just to get in my car and drive like a couple hours at a time. And just to drive to your house. I could probably survive. I need a caregiver though on the way there. But it's been good. I've enjoyed getting to know you but with these voice memos over the last couple of years. All right, Peggy. Let me know what you what can you… give us some final words? All right. Bye bye.
PeggyHi, Hal, well, I'm appropriately wiped out for our final episode here. So I might sound a little bit flat, which I do sometimes when I'm really sick. But I would absolutely love it if you could come out here, by the way, I would love to meet you in person. And I know it would probably take like creeping very slowly across Pennsylvania, which sounds in itself kind of terrifying. Let's face it. But, but yeah, if you could get out here, that would be amazing, especially with a caregiver. So hopefully, we can pull that off someday. I also just really value the fact that we have these, you know, really deep, wonderful conversations. Anyway, even though we've never met in person.
And, you know, a friend told me like 15 years ago, she was like, you know, on some level, you should be grateful that you're not out in the world, Peggy, because it's terrifying out there right now. It's so violent, it's getting worse and worse, people are rude. People are awful. The world is just getting meaner and meaner, you know. And of course, it didn't land very well, because I'm dying to get out there. I would love to be out there in the world.
However, I am super grateful that we have this kind of insider community of people who build each other up and help each other get through this extremely traumatizing and terrifying event that we're enduring day after day after day. And that we can at least support each other because I've met some amazing, creative, vibrant, wonderful people who've just disappeared from the world. So I also appreciate that you're raising awareness to that fact and sort of profiling people in the community because the world just doesn't have access to very many of us and they should. So yes, Hal I and I totally relate to the difficult year of grief. It has not been my very worst year and therefore I can handle it. But I know it's been an extremely hard year for you. So I hope going forward we can just keep being in each other's lives and keep building each other up and getting through this day by day. Really appreciate you Hal and thank you for sharing this Peggy and Hal journey with other people. Okay, bye.
HalWell. That’s episode 47 for you. Thanks so much Peggy. It was great talking with you. Let’s keep it going on the voice memos. Everybody, have a great Saturday. Have a good week. And remember… enjoy living in that body of yours. Enjoy every moment that you can. Alright? Bye. Thank you. I love you. I miss you. Bye. Hal
Follow me on Instagram. (214k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (67k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. Welcome to Living in a Body. This week, I’m sharing a piece that I wrote a couple months ago. I hope you enjoy. The podcast version includes original music. Please click the play button above. Also, feel free to share. Thanks!
King of the Khaen
Have you ever heard of the melodious khaen? (Pronounced 'can') It's the grandmother of the harmonica. A three foot tall mouth organ made of bamboo pipes and brass reeds, the khaen is the national instrument of Laos. It's part of the "free reed" family of musical instruments. A tiny brass reed is embedded in each bamboo pipe. The reed is free to vibrate on one side and it’s securely attached on the other. The sound that this ancient contraption produces is unexpectedly sublime. Truly, you've got to hear it to believe it. It's a pleasing polyphonic blend of trumpets, harmonicas, and oboes with the baritone drone of the bagpipes mixed in there, too.
Though free reed instruments have been common in East Asia since ancient times, it wasn't until the 18th century that instruments like the khaen from Laos and the sheng from China made their way across Asia to delight western ears. It was the free reed family of the East that inspired the development of the modern day harmonica, the accordion, the concertina and more. If you ask me what my favorite musical instrument is these days, I'm gonna tell you that my E minor khaen sitting in the other room is at the very top of the list.
According to my best recollection, I first touched my lips to the mouth of a khaen in 2004. At that time, my musician friend, David Badagnani was house sitting for Dr. Terry Miller. Dr. Miller is an ethnomusicologist at Kent State University who specializes in the music of northeast Thailand, a region whose music and history is closely associated with Laos. On one summer evening in 2004, I needed some help notating a song, so I paid a visit to David. At some point in our get together, I stood up from the dining room table, moved into the living room and I noticed a musical instrument that I'd never played before. In a room full of musical relics, my eyes were drawn to 16 bamboo pipes strapped together like an organ, like some sort of mouth organ. Being a harmonica player, I picked it up, covered a few random holes and I blew some funky rhythms into the wind chamber. In that moment, my life changed forever. Three years later, I would travel with Dr. Miller to remote villages of northeast Thailand in search of the original harmonica. In these far off places, Dr. Miller would connect me with some of the very finest makers of this traditional musical instrument, the khaen.
In case we're meeting for the first time, my name's Hal Walker. On TikTok, I'm @banakula. Believe it or not, I'm a world famous khaen player. In fact, of all the khaen players in the world, I'm the most famous. Thanks to TikTok and Instagram, I've introduced this instrument to an entire worldwide generation. My audience spans the globe and most of them are under 25 years of age. Most of them have never heard of a little country called Laos or the Isaan territory of Thailand where my E minor khaen was made. As far as my 2.3 million followers are concerned, when it comes to the khaen, I'm the original, the O.G. In TikTok terminology, @banakula is the “king of the khaen.”
Doesn't it just figure that the most famous khaen player in history is a white guy from Ohio? Isn't that just the way the injustice of the world works these days? An impoverished nation like Laos produces a miracle of a mouth organ. The instrument survives through a long history of beauty and struggle. It carries with it a tradition of tunes that were passed down from generation to generation. Then some tall blonde guy from Ohio gets hold of one and plays a couple funky rhythms into it and he gets famous on TikTok. This guy never gets around to learning the traditional tunes, but nonetheless, his modern day melody reaches millions. His beat gets into the hands of a couple hip hop producers and their remixes take on a life of their own. This khaen music becomes one of the most popular trending sounds on the internet. No matter where you go on YouTube, Tik Tok, or Instagram, the sound of "Low Key Gliding" is waiting there for you. The sound has permeated social media culture. While the whole fragile Lao tradition is forgotten along the way, the white guys involved end up making some good money off the whole situation.
In case you didn't catch it, the white guy in the previous paragraph is me, Hal Walker, the guy with ME/CFS that writes “Living in a Body.” The truth is that the majority of my income these days comes from my khaen playing. My song "Low Key Gliding" has three million streams on Spotify, millions of hits on YouTube, and 132 million views on TikTok. It's just two chords played over and over again, but there's a whole generation of young people that absolutely love it. In every little corner of the world, youth are huddled around their phones listening to Hal Walker play his melody on this ancient Lao instrument. This phenomenon makes me a one-hit wonder and the timing couldn't have been more perfect.
In 2021, with the devastating onset of moderately severe ME/CFS, I lost much of my capacity to work as a musician. I'm no longer performing in schools and I recently resigned from 25 years as the music director of the Unitarian-Universalist Church of Kent. But a couple weeks ago, I posted another 30 second rendition of "Low Key Gliding" on Instagram. Today, that video has been viewed over three million times. Now, Instagram will send me a few hundred bucks and the khaen continues it's journey into the hearts of young people all around the world.
Over and over again, I get comments from Lao-Americans thanking me for bringing their national instrument into the limelight. And over and over again, I receive messages from wanna-be khaen players who are dying to know how to get hold of one of these things. Time and time again, I have to explain, "It's very difficult to get a good quality khaen. Have you considered starting with a harmonica? That's what I did." There are just a few khaen makers still living and they reside in remote villages of Northeast Thailand and Laos. It takes days for these craftsmen to make just a single instrument. I have to remind the potential buyers that this is not Amazon we're dealing with here. There's no money back guarantee. However, if the buyer has about five hundred bucks to spend and they're willing to take a risk, I might be able to connect them with a guy. Needless to say, thanks to "Low Key Gliding," the demand for khaens on Amazon is like never before in history.
I'm aware that along with fame and fortune comes responsibility. The fact that I have such a large platform calls me to find ways to use this platform for good. Phrases like "cultural appropriation,", "colonization," and "whitewashing history" linger guiltily in the back of my mind and occasionally show up in my comment section. I'm no expert in the matter, but I've made an effort to educate my audience on the origin of the khaen. The video that's pinned at the top of my TikTok profile says this:
“The instrument that has captured the attention of so many of my TikTok followers is called the khaen. The origin of this instrument is the country of Laos. The maker of the particular instrument that I’m playing is a man named Buavhan. He’s part of the Phuan tribe of the Xiengkhuan province of northeast Laos. It takes him several days just to make one khaen. I have such deep love for this instrument and I’d like somehow to honor and pay tribute to the culture from where it came. Thank you Buavhan. Thank you for the days you spent making this instrument. Thank you Lao people. Thank you for the culture that you created over many generations. Thank you to all of you who have responded so lovingly to the amazing sound of the khaen. I encourage you to search for traditional khaen playing on YouTube and visit my friend Jonny Olsen’s YouTube channel to watch the whole process of making a khaen.”
Currently, I'm struggling with the question of how I can do more. I'd like somehow to lift up the culture and the craftsmanship from whence this instrument comes. I'm interested in find ways to give back to the people of Laos and Northeast Thailand that have given me so much. This is all new thinking to me and I don't know how to sort it all out, but I'm grateful to bring you in on the conversation. I figure if I can just do one little action a month, maybe I can make some kind of difference.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
A few weeks ago, I spoke on the telephone with a young khaen player from Nakhon Phanom, Thailand. Aum Suwamat lives right on the Mekong River at the border of Thailand and Laos. We follow each other on Instagram and she's a master of traditional khaen playing. The language barrier between us is severe, but it was a fun conversation. I'm hoping to be a source for Aum to practice her English and I'd love to learn a few Thai phrases myself.
Of course, one of the tragic realities of this whole story is that I’m living with moderately severe ME/CFS. Due to my health, my energy for doing just about anything is severely limited. On a good day, I have just enough strength to play "Low Key Gliding" for about three or four minutes. My lungs are seriously compromised. In some other reality, right now I'd be booking a tour of performances in Southeast Asia. I'd be purchasing my plane tickets, practicing the khaen six hours a day, learning the language and learning the vast repertoire of traditional tunes. Given my limitations, I'm gonna have to find some other way to contribute.
After my conversation with Aum, I was struck with a big idea. As you may know, I have a tendency for big ideas and I’ve got to be careful. Big ideas can be very dangerous for people living with ME/CFS. Even the brain power for editing this episode is taking it’s toll. It's hard enough just keeping up with the most basic tasks of living, much less taking on the injustices of the musical instrument world. But I'm convinced that this idea is a good one. Maybe you'd like to help me make it come true or maybe you'd prefer to help me stay in the reality of living with this illness. Here's what I'm thinking:
Thanks to Dr. Terry Miller, Kent, Ohio is one of the world centers of khaen playing. I may be the only person that recognizes this fact, but it's true. At last count, there are at least four khaen players living here in Kent. I guarantee there's no other town in the US where four experienced khaen players reside. I'd like you and me to host a khaen festival here in Kent, Ohio. Heck, it could even happen in the new social hall of the UU church. The lineup would be incredible. We could find a khaen maker from Laos. Aum Suwamat from Thailand would represent the next generation. Jonny Olsen from Florida, Christopher Adler from Los Angeles and Priwan Nanongkham from Kent would be featured artists. Dr. Terry Miller could give us a lesson in the history of the khaen. And of course, Tik Tok’s king of the khaen would at some point do an epic rendition of "Low Key Gliding." Imagine that: A whole weekend dedicated to the khaen. Hundreds of people could learn the origins of this beautiful instrument and possibly even go home with one themselves. What d'ya say? "Kent Khaen Festival?" Who wants to chair the committee?
A few weeks ago, my mom dug up a photograph of me that has me utterly perplexed. This photo was taken at my parents home at a birthday party in 1991. Incredibly, there's a khaen sitting right behind me in the photo. As far as I know, my first playing of a khaen was in 2003. Almost as if it were photoshopped into the scene, there it is, a khaen. Of course, there must be a reasonable explanation. I imagine that someone at the party was associated with Dr. Miller and brought the khaen over for show-in-tell. But tell me, what are the chances that such a photo would exist, – a photo that would so serendipitously foretell the musical future of the guy sitting there with the birthday cake. Little did we know that that guy blowing out those candles would become the most famous khaen player in the world, the king of the khaen. Little did we know. It’s wild.
Thank you so much for reading. Have a great week and remember to enjoy living in that body of yours today. All the best. Happy New Year! ❤️ Hal
Follow me on Instagram. (210k followers) Hang out with me on TikTok. (2.3M followers) Grow with me on YouTube. (60k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (2.3k followers) My website is super old but I’m hoping to revamp it soon. Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” Please click the Play button above to hear the podcast version of this publication. I hope you’ll share this episode with one friend. Thank you!
Devastated
Living with this illness is like being in the jaws of a monster and you never know when it's gonna take another chunk out of your life. This week, ME/CFS took another bite out of mine and I'm devastated. Today, I'm more bedridden than I was a week ago. I'm in unrelenting discomfort, my ears are ringing to high heaven and I have no idea where it goes from here. I'm calling my sisters several times a day for deep crying sessions. I'm scared.
Every other time that I've had a major turn for the worse, the symptoms eventually balance out to some more manageable state of normal, but the manageable states of normal keep getting worse. And of course, no one knows what to do about it. The doctors don't know. The alternative healers don't know. The commenters on Facebook that think they know don't know and I don't know. The not knowing is terrifying. I'm in the clenched jaws of a monster and it does whatever it wants to do. My friend Peggy refers to it as the "endless pit of suffering of ME/CFS." That damn phrase rings through my mind and scares the hell out of me as I lie here in this adjustable bed with way too much time for thinking. Please indulge me as I say it out loud. F**k this illness.
You should see me. I take such good care of myself. I pace all my activities. I take lots of deep rest. I don't smoke, I don't drink and I don't watch TV. I eat well. I drink reverse osmosis water with minerals in it. Everyday, I take high quality supplements, 500 mg of Oxaloacetate and 2 mg of Abilify. I stay in close contact with good people in my life and in between all the grief and sadness, I practice smiling all day long. But this illness doesn't care about the good things that I do. It doesn't care that I'm Hal Walker and that there's so much life that I still want to live. ME/CFS has a life of its own and like a ruthless thief, it keeps stealing from me whenever I expect it the least.
For weeks before this crash, when people would ask me how I'm doing, I've been glad to tell them, "I'm on a manageable plateau. I generally know what to expect when I wake up in the morning and one day at a time, I'm getting used to the new normal." And then out of the blue, last weekend happened. Some mysterious switch got flipped and I'm living in the aftermath. I feel so unwell. I can't leave the house and at times, I can barely sit up to write. The ringing in my ears is maddening. It's strangely connected to an awful numbness in my brain that extends down to my belly and to all my weak, numb limbs.
Yesterday, I invited my 91 year old mom over to rub lotion on my icy cold feet. When I reached out to hold her hand, the grief broke through us both and together we broke down in tears. We wept for about 15 minutes. I'm grateful for my mom’s intuition to crawl into bed with me and let me know that it's ok to cry. I've been crying so much. Sometimes it feels like there's no end to the crying. I'm experiencing layers of grief on top of layers of loss on top of layers of illness. I pray to God that there's some other side to all this muck that I'm trudging through.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
This post is a cry out to the “millions missing.” I need you. It's a love song for Peggy and Martin. It's for Emma and sweet Lizzie. I'm here with you. These words are a shout out to the ones who lost their jobs, lost their loves and lost their lives due to this illness. I'm grieving with you. It's a prayer to all the ones who are trapped in bed, who live alone and who don't have the proper care. I have nothing to say but "I care about you" and I'm so, so sorry. It's just not fair. Please know that you’re not alone.
Just like you, I’m not ready yet to go missing. I want to go back to the way it was. I want to give assemblies in elementary schools and then walk out to my car knowing that a whole school is in love with me. I can't stand the disappearing. I want to direct my choir and play concerts and gather around the piano for singing. I want to ride my bike through town with my head held high and greet my neighbors with a “Hey! How’s it going?” I'm not ready to let go of my old life. I’m so afraid of being forgotten.
Johanna encourages me to feel it all and I assure you, I'm feeling it all — every ounce and every wave of the feeling. She tells me how lucky I am to have all this time to focus on training my mind and developing a relationship with the great mystery. I think I know what she means, but sometimes I question whether I’m cut out for the spiritual way of looking at things. It's difficult for me to see the blessings in all this discomfort. My main prayer lately is, “Ease up on me, God. C’mon! Ease up.” I’m dying for some sort of relief, but there's just nowhere to run. It seems that reality is my only option. At times, the intensity of the feelings are more than I can handle. But somehow, 15 minutes at a time, I keep handling them.
As I've told you before, over the holidays, I'm taking a break from publishing on Substack. Depending on how it unfolds in this body of mine, I hope to be back with a more hopeful message in the new year. It's been a little dark around here lately. While I’m away, I’d love to stay in touch. I'm always open to encouraging words in the comments. Thank you so much for being here.
On a final note, I wish you the best as we approach this season of wonder. May your life be full of divine love and togetherness. May we all break through the walls that separate us and may this new year bring peace. For today, enjoy living in that body of yours. I’ll try to do the same. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” Please click the Play button above to hear the podcast version of this publication. I hope you’ll share this episode with one friend. Thank you!
Recently, I had a long phone conversation with my new friend, Martin Keogh. I’m glad to share that conversation with you here today. Martin and I share the very difficult reality of having been living full creative lives when we were each suddenly taken down by this damn illness. He’s been living with a severe version of ME/CFS since 2018.
Martin Keogh was born in Canada, grew up in Mexico and spent most of his adult life in the USA. He says his bones are Canadian, his blood is Mexican and his muscles are American. He was a priest, but then he discovered contact improvisation dance. He likes to say that dance saved him from a lifetime in the priesthood. Before ME/CFS smote him, for forty years he toured to several continents a year teaching and performing dance. He’s the father of four and now the grandfather of four. He recently published his sixth book. It’s a book of poems called “Naked Realities.” You will find him on facebook as “the Missing Neighbor.”
The Missing Neighbor
HalHello, Martin.
MartinHi, Hal. Thanks for having me.
Hal…You know, I've always pictured you being on the East Coast.
MartinNo, I live on an island in British Columbia… a very beautiful island.
HalYou know, I was just downstairs on my porch reading some poems from your book, Naked Realities. And every single one, I can relate to. And that doesn't often happen with me and poetry. I was just like, wow, this is speaking my language. Thank you so much for this book.
MartinOh, thank you for that. It's been amazing for me with this condition, bedridden about 22 hours a day, to find that I could write for 15 minutes a day, that I had the brain cells to do that. And then, lo and behold, 15 minutes a day can actually become a book that people can hold in their hands and hearts, after 18 months. So, even with this condition, with just that little drip drip of effort, something can appear.
HalWow. So does one of these poems take you about 15 minutes?
MartinIt's funny, there's a poet, he's dead now. His name was William Stafford. And he wrote a poem every morning, no matter what. And the first year, he threw them out every day, but his wife snuck them out of the trash. And at the end of the year, she opened them all up and said, “Look, there's like 60 good ones here.” And that was his first book. And I'll never forget, because I asked him, I said, “What do you do if you don't like the poem?” He said, “I lower my standards.” So every morning I write one, well, not every morning, but most, no matter what. But by the time I've edited it, and polished it, it's a whole week of 15 minutes. But just like being physical, if I try thinking for too long, I also crash, so I have to not keep going even when I want to.
HalAnd that's because of this illness that you're living with.
MartinYes, which from “Living in a Body,” I love you calling it myalgic encephalo-f**n’-myelitis, also known as chronic - fk you - fatigue syndrome. I love that.
Hal That is one of my great contributions to the illness, I think. Hopefully, it’ll catch on. I know, isn't it frustrating? Isn't it? I mean, frustrating is kind of a small word for what it is.
MartinYeah, and it's, it's this thing that, you know, we all used to live these full, rich lives. And now we can't, because we're punished if we live or even, in some ways aspire towards living those lives that we used to have.
HalYou know, this reminds me of one of the poems that just jumped right at me. It's right at the beginning of the book.
Martin”It's like amnesia?”
HalYeah. “Like Amnesia.” That's the one I think that yeah, “It's Like Amnesia.” “Every time I feel a smidgen better…”
Martin”I forget I am ill and rush into the joy of activity. And again, I find myself falling into the abyss where fatigue has no boundary. All these years later, I rushed to the joy of activity every single time.”
Hal“I feel a smidgen better.”
MartinUh huh. I put that one first because… I don't think everybody shares everything that I've put in the book. But that one, almost everybody with this condition knows that, that it's like, oh, I'm a bit better. My old self is back yay. Oops, wham!
HalOne of the things I like about the poems is that they're short and they can be taken within a single bite. They say so much in just a few lines. Is there a name for this kind of poem?
MartinIt’s funny. I call them poetic reflections, because they're kind of prose, but broken into poetry lines. So I take something that I notice or some feeling that comes up as a result of living with chronic fatigue syndrome… with ME and I lay it out as my gut says it right away. And I do go back and iron the language a little bit and work with sound some but it's read very conversationally. And sometimes an image sneaks in… I want to read you one of my favorites. It's this one…
“No one chooses to get sick. Illness chooses us, summons us, consumes us in an instant. No one chooses to have their life dismantled, their agency impaired. No one chooses to live with the three daemons of long haul illness — doom, depression, and despair. After the capacity to choose get stripped away, we sink into an immediate proximity to the bear and fiery filament that bestows life.”
HalWould you say that last line again, I need to hear that a couple times,
Martin“after the capacity to choose get stripped away, we sink into an immediate proximity to the bear and fiery filament that bestows life.”
HalDang. Those are some deep words.
MartinAnd it feels like we have to… we lose so much, like what is still there that's keeping us alive? Whatever is at the core of life is there keeping us alive. And the photo, the painting that's on the cover is from that poem. And it's actually a painting of the Annunciation of when, I forget the name of the saint, who comes down and tells Mary that that she's pregnant with God's child. And then you see in the image, this bright filament in the painting.
HalJust so everyone knows that we're reading from a book called Naked Realities — Living with an Invisible Chronic Illness. These are poetic reflections by the missing neighbor. And Martin, I don't think I see your name anywhere on the book. Was that intentional?
MartinThat's very intentional on several levels. One is for the listeners who don't know, those of us with this condition, our lives get smaller and smaller. And there's a way in which we become missing from life. And we are called the “millions missing.” And I know that I am one of the “millions missing” because I used to tour and teach dance on several continents a year. I had a very big life and it in a sense got robbed from me. So I wanted some way to say that this book is by one of the millions missing and I thought oh, the missing neighbor. Also it makes it gender unspecific. Because so many more women than men suffer this disease. (I think it's 80 or 85%.) I wanted people who read it to be able to go “Oh, like any one of the missing millions, the millions missing could have written this.”
HalWow. Is there a part any part of you that wants credit — wants Martin Keogh to get credit for this?
MartinOh, Hal. To be honest. Like in my own, let's say Facebook community, I've let people know that I have this. But there's a way in which it's not how I want to be identified is by my illness. And that was another reason I didn't want to put my name on the cover as the author of this. I mean, in a way, it's our illness that's authoring this book. And I want people to still visualize me as somebody who's vibrant and athletic and intellectually engaged. Even though all of those have become such small parts of me, I still want people to see me that way. And that was another reason to have this other name on the cover.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
HalThat's fascinating. You know, I write this weekly Substack. “Living in a Body.” And after today's, my mom called me crying, she was crying. And I was thinking I gotta, I should lighten this up a little bit. This is getting too heavy and too depressing. And I don't want to be known for someone who's… I don't want to be known as a tragic figure.
MartinMm hmm. And, yes, yours today was about giving up your position as the music director of the Unitarian Church. I read it earlier today. And I actually thought it was one of your best. And how you, in a sense, talking about naked reality, you just really put it out there. And for me, that's what I come back to your substack for is when you just like turn the insides out for us to see. I feel so much recognition in your experience. And it's helpful to me, so I wouldn't encourage you to lighten it up. I would say go for the feeling whatever the feeling is. It helps me anyways, as one of your readers.
HalWell, I'm honored to, to know that you're one of my readers. I'm really honored. You know, I wanted to hear a little bit more about when this illness first smote you. Like what what was that transition like from being the vibrant dancer and the athlete? Over how long did it happen? And when did it happen?
MartinIt happened. I just had my anniversary on October 26 of when it happened. And it was literally one day to the next. A week later, I was going to fly to teach this partner dance form that I used to do — contact improvisation dance. I was going to teach in Kyiv and then Barcelona. So five days later, I was going to leave. I was sitting at my desk and out of the blue, I had a heart attack. And it really was out of the blue because I had great blood pressure and ate fantastic foods. I know most of the farmers on the island here, who grow the food to pull the onions and the beets from the ground. There were people who said I was the model of aging well. And I was 60 and but still dancing full out. And this heart attack put me in the hospital for four days.
They went in and they put in a stint. And they said afterwards, okay, everything looks good. But a month later, I had this horrible fatigue. So they went in again and they put in two more stints just to be sure and came out and they did a stress test. And they said, “Martin, you're like a bird in a cage and the door is open, you can fly. Your heart is fine.” And the stress test, which is running on a treadmill for five minutes, knocked me out for two weeks. Couldn't get up. And I had the brain fog and it became clear really soon that something else was going on. And it became…Yep, ME/CFS.
I fortunately had a great doctor. She just retired unfortunately. And I remember her saying to me, she said Martin, I'm willing to give you this diagnosis, but it's such a sad and hopeless diagnosis that we are going to test you for everything else because I would much rather find something that's treatable. And I actually did not get an official diagnosis for two and a half years. And so at the beginning of this year, I finally got into the complex chronic diseases program at BC Women's Hospital. It’s the only program of its kind in all of Canada. And in the very first appointment, they said, “Oh, yep, this is what you've got. And in fact, you are in the severe category.”
It was one day to the next. I couldn't dance. And I also had several books out before that. I couldn't write. It took me a long time to realize, okay, 15 minutes a day, I can write. So there's one poem in there, I love to read this one because it's about the anniversary. I wrote this on the anniversary of the heart attack. And it says,
On each anniversary of the outbreak of this illness, for a time I grow despondent. Yet again, one more year passes deep in this crevasse, staring into the rock walls of boundless fatigue, yet one more year lost in this unending chasm with no maps or signs to direct me towards recovery. After another cycle of seasons, one after the other, I continue to gaze up and there along the top rim of the canyon, that ribbon of cobalt blue sky that guides my life.
HalMm. Beautiful, beautifully read.
MartinAnd you know the statistics, that only 5% of people with this disease get out of it. And everybody who gets out, it's by something different. So there's nothing that we can look to that says, “Oh, here's the way.” And I think it's really important for those of us with this disease, in a sense to not have naive hope. Because in the end, naive hope leads us to overdue and crash. But it is good to have some kind of curiosity about you know, something along the way, is going to help us.
HalI think one thing that strikes me about this illness is the invisible nature of it. Like, you sound so vibrant on the phone, and so alive and so intelligent and so creative. And from my perspective, people always comment on how good I look. They say, “Oh, you look great, Hal. You look great.” It's just the invisible nature of this illnesses. Do you have any poems about that?
MartinI think I do. And you know what, people don't see that right now, I'm somewhat lucid, but I've been preparing for this phone call for days. And I've been horizontal. And I got up for breakfast this morning. And then I have had an eye mask on most of the day, so that I can be lucid and awake for you and for our conversation. And so people see me for these moments when I'm actually interacting and quite present but they don't see the other 23 hours of the day where I'm mustering.
HalWell, thank you so much for taking the time to do this.
MartinI would love to read the last one in the book.
HalOde to the Good Doctor?
MartinNo. I Know I Will Recover.
HalI Know I Will Recover.
MartinYes, it's. Again, I think hope is not the most healthy emotion to have with this illness. That hope leads to overdoing. I know for me it does. But there's a way in which each moment of the day, if I'm just curious about where I am in the moment, and what beauty is around me and what were I can make connection within my limitations. That attitude seems to help me help sustain me. So the last poem in the book goes like this… poetic reflection,
I know I will recover. Against all the evidence and all the odds, I know this to be true. My symptoms will ebb away, my cells will regenerate. I will live a life brimming with vitality, stamina, and the constitution of an ox. To not shatter into a million pieces each week, month and year. I'm compelled and duty bound to hold and trust this to be true.
HalMm hm. Wow. You know, I've recently been in touch with someone who is having some success with a particular diet and it's very extreme. And I, I don't, I guess what I'm saying is, have you tried…. dealing with my own thinking of have I tried this yet? Have I tried this yet? Like, what if this is the thing? What if this is the thing? And there's always that little question of what have I not tried yet? That might be the thing that gets me out of this. Do you deal with that too in your own thinking?
MartinI do. And so many people propose so many things to try. And I always now come back and say, “Do you know anybody who this has really helped?” And one of my current doctors in this program says there's so many things out there that will actually help you for a month, but they're not sustainable long term. A lot of them is because you've put so much mental energy into them that they are going to work. So if enough people say, “Oh, this has helped them,” then you know, something, I might give it a try to. Like there's some supplements I take because enough people have said, “Hey, this really helps me” and in my experiences, they helped me. And then at this program, they've prescribed this trio of medications to me that do not do anything for my physical stamina, but they really helped my mental stamina and also a little bit my social stamina. The fact that I'm here talking to you on the phone is really helped by these meds. And so… I'm happy to treat the symptoms, to have little increments of things being better. But of course, I think the hardest thing and the most helpful thing is pacing.
HalYes, that is the hardest
MartinDoing less.
Hal
Yes. It’s the hardest thing and the most helpful thing for creative guys like us are for creative guy like me, I just want to go I just want to, if I get energy, I want to use it to create something.
MartinYes. And Hal, I see you, you know, you're traveling to Texas to see your daughter's play or you're traveling to Chicago to go to a concert and I just go, “oh my god, how do you do it?”
HalThose were both questionable. They I think they made me worse.
MartinYeah, it's those things. We want to do them so badly. I mean, it's your daughter. You want to see her in the show. And then it's like, “oh, God, what is the price that we're going to pay?” Sometimes I'm here going “Hal, don't do it. Don't do it!”
Hal
Yeah, you and the rest of the CFS community have been have learned their lesson. Hey, coming back to the naked realities. Were you a poet before this before the illness? Or were you a writer?
Martin
I was a writer but I never thought I would put out a book of poetry. And it is a big surprise to me. I love language. In my teaching, I was known, even though I'm a dancer, I was known for my use of imagery and language to get people moving because I found good image could really get people moving like they had never moved before. Images move in my veins. And so somehow now they move out towards these poems each morning… these poetic reflections about this condition that you and I unfortunately have to share.
HalWell, Martin, thanks so much for this conversation. It's really been, it's really been nice to talk with you. I love hearing your perspective.
MartinThank you for having me. And just to let people know I'm on Facebook and Instagram as the naked…. the Missing Neighbor,
Hal
The Missing Neighbor
Martin
I put up a reflection once a week. And so people they can get the book or they can just follow me on one of those two places. So Hal, thank you for all that you do for educating people on this for doing it with such candor. And thank you for having me here today. This has actually been quite fun.
Hal
I know. I think it was fun too maybe I'll keep doing this conversation kind of thing.
MartinYeah. And Hal, I was serious what I said you're, you're “Living in a Body.” When I see it in the email box, I get excited. And it's because you talk so eloquently and honestly about this disease. Like today was this mixture of, in a sense what has been most precious for you and you having to say goodbye to it. It was incredibly moving. I didn't think it was heavy at all. Actually, it was full of feeling. I would not have put the word heavy on it. But that's the perspective of somebody who's got the disease reading it. I'm sure your mother will have a much different perspective. I’d like to meet your mom. I imagined she's quite full of beans actually.
HalShe's quite full of beans. Exactly.
MartinOkay, Hal we should hang up. This is too much fun.
HalI look forward to the next time, Martin. Thank you.
MartinMe too. Okay. Thank you. Goodbye.
Thankyou so much for being here. Enjoy the day. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is Living in a Body. Please click the play button above to listen to the podcast version of this publication. It includes original music! Feel free to leave your R-Z gratitude list in the comments!
Alphabet of Gratitude: Part Three
I struggled with the gratitude list this week. I haven't been feeling particularly grateful. With the onset of winter, I've been experiencing so much fear and sadness. I find the combination of cold, gray skies and living alone with chronic illness to be brutal at times. This whole alphabet idea started as a tool for my recovery, but as is my tendency, I turned it into a literary work for Substack. At times, I got so caught up in the syntax of the sentences that I lost the spirit of gratitude in the list. But there's something to be said for not giving up. I kept writing. I noticed it was the action of throwing words onto the page and speaking them out loud that pulled me back to giving thanks. I'm so grateful to you for reading my alphabet of gratitude. Here's part three:
R for Rest
The unfortunate reality of living with ME/CFS is that there's no known cause and no known cure. One of the only known strategies for dealing with the symptoms is rest. For a non-stop, go-get-'em guy like me, that's not such an easy task. But I'm grateful to have discovered an approach that works… when I'm willing to do it. In the world of chronic illness, they call it "pacing." I call it the "weighed and measured" approach to rest.
The weighed and measured approach uses a timer to cut the day into 12 minute chunks. I start by setting the clock for 12 minutes. During that time, I rest -- a deep kind of rest. I lie on my stomach, I close my eyes, I breathe and I practice resting. When the timer goes off, there's a brief transition from my "rest bed" to my "work bed," and then I set the timer again. This time, I’ll do 15 or 20 minutes of quiet activity. It may be writing, it may be a phone call or it may be balancing my budget. But when the timer goes off, whether I want to or not, I head back to the rest bed for 12 more minutes of rest. On the more challenging days, this approach makes facing the hours more manageable. Today, I'm grateful for weighed and measured rest.
S for Sobriety
The first time that I ever heard the word "addict," I knew that I was one. The signs were all there -- the self-centeredness, the lying, cheating and stealing, the physical cravings, the mental obsession and the way I lived two separate lives - the public life that I showed the world and the hidden life where I was all alone in a car looking for a fix. At times in my life, certain substances and behaviors had me by the throat and I couldn't get free. Today, I'm grateful to be an addict in recovery. One day at a time, I'm practicing a life of abstinence, gratitude and service.
It's been almost a year since I've smoked marijuana. It's been about eight years since I've drunk alcohol, consumed caffeine, eaten sugar, eaten flour or looked at pornography. Today, I no longer hurt myself with these substances and behaviors. I truly hope that I’m done creating wreckage of the past in addiction. I'm certainly no saint and it doesn't solve all my problems, but I sure am grateful to be sober. I'm glad for the connections I’m making and for the awarenesses that keep showing themselves as I face life directly in this recovery.
T for Tea
This afternoon, I brewed myself a nice pot of hot tea. Today, I'm drinking "Twig ‘n Berries" which is a concoction of herbs blended up by my friend Pete at Pete's Organic Tea. Apparently this combination of lemongrass, couch grass, elderberry and gokshura is good for the health of the prostate. At 56, my prostate needs all the help that it can get.
During the Summer, it's easy for me to forgot about hot tea. I mainly drink water. But today, it's cold, dark and cloudy. With a hot cup of tea in my hand, I'm loving the warmth, the scent and the earthy taste of this tea. I’m glad I bought that French press a couple years ago and I'm glad to have found a couple bags of Pete's herb blends in the cupboard. Today, I'm grateful for tea. It's such a caring thing that I can do for myself in these difficult wintery times.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
U for Unitarian-Universalists
On Jan 21st of 2023, the UU Church of Kent will be holding a celebration to signify an end to my 25 years of service as the music director of the church. My heart is broken. I'd always imagined myself growing old as the music director of that church. It's a big loss, but I'm grateful for the good work that I've had for all these years. I realize that not everyone gets to love their job as much as I loved mine. To be honest, it rarely felt like a job. It was more of a lifestyle. It was like being a part of a family and my task was to inspire the family to make good music. The UU Church of Kent and I were a good fit. I hope you'll join us in Kent on January 21st.
But it's interesting. Even after 25 years, I'm still resistant to calling myself a Unitarian-Universalist. In typical UU fashion, I don't join groups easily. I don't take on labels lightly. But when I think of all the good UU's with whom I've crossed paths over the years, my heart softens and I'm grateful. I remember in 2005 when Rev. Melissa Carvill Zeimer came to be the minister of our church. I so admired her way of thinking and her way of being that I came to a realization. If Melissa can call herself a UU, then maybe I can do it too. It was about that time that my friend Margot and I wrote a great song called "Unitarian-Universalist." One of my favorite lines goes, "I know this is my church (eternal talkin' about) these are all my people. (Our voices singing and shoutin')" It's a great song. You should listen to it. I’m grateful for the Unitarian-Universalists in my life.
V for Voice
Ok. I admit it. I like the sound of my own voice. To be honest, I'm almost embarrassed to tell you how much I like it. It's just so smooth and silky. In all the steps of putting this publication together, my voice plays such an important role. When I'm writing, I talk out loud to myself the whole time. I'll read a paragraph over and over again until it sounds just right coming out of my mouth. I love putting the finishing touches on a piece by reading it into the microphone. I think it must be my background in songwriting that makes the spoken word such an important part of the writing process.
I don't think about it that often, but what a miracle it is to have a voice. It's so amazing the way that the brain, the breath, the tongue, the teeth, the jaw, the vocal cords and the mouth cavity all work together to create a unique voice. When schoolchildren used to ask me what my favorite musical instrument is, I would usually reply, "the voice." I’m so grateful to have a voice.
W for Wheelchair
I'm a part-time wheelchair user. At the bottom of my steps, after a ride down on the chair lift, when I need it, my blue electric "Falcon" wheelchair awaits me. I'm grateful for the way this chair gets me around the house.
I often eat my meals sitting at the dining room table in my wheelchair. Sometimes when I've taken a big bite to chew, I'll take a quick spin to the living room and back just for the fun of it. A couple months ago, I installed a cargo carrier and a hitch on the back of my Toyota Prius. Now I can easily fold up the chair and carry it with me wherever I go. When Mango was here, he built a wheelchair ramp off the back porch. I'm so grateful for my wheelchair.
X for Xylophone
Somewhere along the road, a six note xylophone came into my life. The six notes include a pentatonic scale which means that it's impossible to play a wrong note. All the notes sound good together. It's got a satisfying, hollow, woody sound. If you're listening to the audio version of this episode, you've been hearing it the whole time. The ringtone that I use on my phone is a ringtone that I made with this xylophone. It's such a good ringtone. I should sell it to Apple and make a million dollars.
I was interested to learn today that in Ancient Greek, xúlon means 'wood', and phōnḗ means sound. So Xylophone literally means "the sound of wood." I'm grateful for my xylophone.
Y for Youth
Age is wierd. I'm 56 years old, I'm living with the emotional development of a 25 year old in a body that feels like an 80 year old and I look about 42. Someone reminded me the other day that today I'm younger than I will ever again be in my entire life. On this very day, I am living in my youth. This is it. I sure didn't expect youth to feel like this, but the reality is I'm younger than I'll be tomorrow... or the next day. The only day to enjoy my youth is today. Today, I can get to know myself a little better, I can be my own best friend and I can know that I am enough. So everybody, go out there and enjoy your youth. We're not getting any younger.
Zzzz for Sleep
I used to procrastinate going to sleep as long as I could. For some reason, I was afraid to put the day to rest. I'd watch one more show, or check one more email or have one more bowl of cereal. Today. I love bedtime. Right around 9:00, I’m ready for the day to be done.
Since the worsening of this illness in 2021, sleep has become a bit of challenge. Fortunately, I'm able to fall asleep pretty quickly but every night I wake up at either 1:30, 2:30, 3:30 or 4:30 in the morning. If it's earlier than 4:30, I take a half dose of Zzzquil. It’s the clear kind that's free of high fructose corn syrup and alcohol. Essentially, I'm taking about 20 mg of Diphenhydramine. It puts me back into a weird kind of sleep and I'm able to wake up again at 6:30 to start the day. I don't love having to rely on the ZzzQuil, but last night at three o’clock in the morning, I was mighty grateful to have it as an option.
On that note, I wish you all a good night. I hope you sleep well tonight. Thank you so much for being here and supporting me in this project. Now that I’ve finished the Alphabet of Gratitude, I'm planning soon to take a break from producing these episodes. I’m starting to work on a big writing project. I can't wait to tell you what it is. In the meantime, enjoy living in that body of yours. I’ll try to do the same. Wherever you are in the world, I hope you have a great Saturday. Enjoy. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is Living in a Body. Please click the play button above to listen to the podcast version of this publication. It includes original music played on the RAV drum! Also, I’d love it if you’d share this post with one friend. Thanks!!
Alphabet of Gratitude, Part Two
During this season of Thanksgiving, I’ve been writing an extended alphabet of gratitude. Over the course of three weeks, from letter “A” to letter “Z,” these are the things for which I’m grateful. Today, we’ll cover the second third of the alphabet —from “J” to “Q.” Please feel free to share your J-Q gratitude list in the comments.
J for Julie and Johanna
When it comes to sisters, I'm truly a blessed man. Last week, I expressed my gratitude for the youngest, Caroline, and this week, I want to say how grateful I am for the two olders -- Julie and Johanna. Each a caring powerhouse in her own right, the combination of these three women in my life is a force to be reckoned with. I could never express enough my gratitude for the way that Julie, Johanna and Caroline have shown up for me through this illness.
When I'm struggling, Johanna encourages me to "go early." She asks me to delve into the places where little Hal didn't get his needs met. With Johanna, I have the freedom to say out loud the things that the younger version of myself never got to express. In the realm of healing and presence, Johanna takes a radical approach. I'm so grateful that she exists.
Julie, on the other hand, fills in on the more practical side of things. Having recently started a new career as an 8th grade English Language Arts teacher in the LA public schools, she's one of the most high functioning people that I know. If I need someone to help fill out a form, build a website or encourage me to live another day, Julie's the go-to sister.
When it's seems that there's no one in the world who could possibly understand and I just need a shoulder to cry on, I call Julie, Johanna or Caroline. These three sisters have helped me get through some rough times in this last year. I'm so grateful.
K for Kent
In my younger days, I yearned to live in a town that was a little bit cooler than Kent. Kent just wasn't quite hip enough for me. I wanted more music in the street and more hippies in the park. I wanted more harmonica playing, bike riding, frisbee throwing revolutionaries just like me. I wanted a natural foods bakery with the perfect muffin. I wanted Boulder or Asheville or Eugene, but what I had was Kent. I ventured away a couple times, but I never really left. I just yearned for more.
In 1994, after a brief stint in New York and then Boston, I wrote a song called Come Home. The lyrics went like this, "There's no more time for wandering from city to city looking for the perfectly cool community to make me perfectly happy." I was beginning to realize the truth that no matter where I go in the world, it's just a similar version of myself that I'll find there. In the song, I proclaim the banks of the Cuyahoga River to be my home and I make a vow to stay. It's taken time, but after all these years, I'm finally settling into my hometown. At this point, I can’t imagine myself going anywhere else.
Today, I'm about as much of a Kent man as anyone can be. When I walk out my door, I'm in Kent. This town is in every corner of my house and it's in my garage too. Kent is in the front yard and it's in the back yard. Kent carries me into town to pick up the groceries and it's stamped on the case of every musical instrument that I own. When I die, they’ll know that I was from Kent. I'm grateful for this town. I'm grateful for Kent, Ohio.
“Kent, Ohio I know that I'm home when I'm, oh, in Kent, Ohio.”
L for Living in a Body
In 2021, when my symptoms were at their worst, I didn't think I'd survive to see the Spring. My body was crashing on a weekly basis and it seemed that there was no end in sight to the worsening of the illness. The phrase, "the endless pit of suffering of ME/CFS" lodged itself in my brain. I experienced first hand why suicide is the number one cause of death of patients with severe versions of this wretched illness. I asked my sisters if they'd help me come up with alternatives to living if my situation continued to get worse.
This morning though, I woke up in a soft bed about 15 feet above the ground. I can breath, I can see, I can taste and I can feel. Lately, my symptoms have plateaued at a more manageable level and I'm grateful to be alive. I'm grateful for hands that grasp and feet that balance. I'm grateful for ears that hear and a jaw that bites. I'm grateful for the skin that keeps everything so nicely wrapped up inside. It's not easy waking up in this particular body every morning, but it sure beats the alternative. Today, I'm grateful to be living in a body.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
M for Mango
For the last four and a half months, I've had a full-time live-in caregiver. Mango showed up in my life just when I needed him the most. He's been such a wonderful companion, a delightful housemate and a profoundly generous helper. He left for Kenya last Sunday, so I'm spending the week discovering just how independent I actually am. I'm feeding the cat, preparing the meals, watering the plants, doing the dishes and putting myself to bed all on my own — in hopes that it all doesn’t bring on a major crash. It's been a tough week and a big transition.
Mango's gone now, but he left a strong presence in the house. The place is cleaner than I've ever seen it before, there were nine pre-made salads waiting for me in the fridge when he left and the prayers that Mango spoke every night on my behalf are still lingering in the air:
Dear Lord, Dear Father, thank You for this evening. Thank You for everything. God, Father. You know the reason why you connected me with Hal. Father God, your name should be lifted up. You put me together with Hal. We've been as good family. Lord, Father, I humbly request you. Dear Lord. It's not that easy. But we want to believe in you. May you continue covering him, Oh Lord, Father God. May you be with him. Oh, Father, God. It's winter time, God, Father. But I believe. I do believe that You are here. That's my faith God, Father. I have the strong faith. You're going to protect him. You're going to be with him. You're going to take care of him God Father. Father, God my request from you God. May you give him power. May you add him knowledge. May you strengthen him. May you be with Him. May you bring all the angels God Father, I request you. I pray because I believe that you're going to honor my request. Father God. — Bonnie M. Mango
I grateful for my brother, Mango. He and I are family now.
N for Nieces and Nephews
Not only am I a dad, a son and a brother, but I'm also an uncle. I've got six awesome nieces and nephews. While I've been lying here in bed, they've been busy growing up into teenagers and young adults. In order of age, there's Alex, Charles, Lucas, Anna, Hunter and Leo. A couple of them live nearby but the rest live far away. I look forward to the rare occasions when I get to see them.
As I'm writing this, it occurs to me very sadly that as an uncle, I've been missing-in-action for a while now. I've been so wrapped up in this illness that I've lost contact with this wonderful youthful part of my family tree. Thanks to this realization, I've started a text exchange with each of my six nieces and nephews. Out of the blue, today, they each received a text from their Uncle Hal wishing them a Happy Thanksgiving.
They say that gratitude is an action and I believe it. I'm grateful for the inspiration to connect that this alphabet of gratitude is bringing me. I'm interested in the possibility of some sort of renewed connection with my nieces and nephews. I'll let you know what happens as I ease into these text messages.
O for Oatmeal
Even though I've got all kinds of bodily complaints, I'm glad to sat that my elimination system is working quite nicely. As my grandmother might have said, I'm so glad to be regular. I'm grateful for the role that oatmeal plays in the regulating process.
Just like my dad, on most mornings, I eat a medium sized bowl of oatmeal. I boil the rolled oats in water and I add a pinch of salt. I always have some fruit on top and I always add a tablespoon of olive oil for the fat. With six ounces of soy milk on the side, it gives me a good start to the day. I like the taste, I like the texture and I like the fact that I can always count on a good bowel movement after breakfast. There. I said it... and I'll say it one more time. I'm grateful for oatmeal and all it’s intestinal benefits.
P for Mr. Pollack
When I was in high school, I had a teacher that taught me how to write a paragraph. For three years out of the four, my English teacher was Mr. Pollack. I consider him to be the most influential teacher that I ever had. He instilled in me a love for writing and a passion for building sentences.
A couple months ago, I gave Mr. Pollack a phone call to say “thank you.” Here's the first part of our conversation.
Mr. Pollack: Hello.
Hal: Hello, may I speak with Bill pollack?
Mr. Pollack: This is he.
Hal: Mr. Pollack. This is an old student of yours, Hal Walker.
Mr. Pollack: Oh, sounds familiar.
Hal: I was a student of yours for three years back in the early 80s…. And you were one of my most influential teachers.
Mr. Pollack: I'm glad to hear that. Three years though…. That's unusual. I remember your name. I just retired after 56 years of teaching. I taught 32 in Ohio and 24 in Nevada.
Hal: Wow. Well, I had you freshman year, and then you moved up to sophomore. And then when I was a senior, you moved up to be the senior teacher.
Mr. Pollack: Now was it AP English or honors English?
Hal: Yeah. Honors English. 1982, 83 and 84.
Mr. Pollack: Okay,
Hal: Lately, I've been making my living as a writer. I'm just always so grateful for the way that you taught me how to write a paragraph.
Mr. Pollack: Well, you don't realize how great I feel with your phone call. I mean, that's, that's the kind of thing that really makes me love my life. ...to hear you say that. And I've had some other people contact me too, over the years... teaching gave my life meaning. And that's what I loved about it.
What a great guy. I hope to do a full interview with Mr. Pollack one of these days. Thank you, Mr. Pollack. My Substack community thanks you as well.
Q for Quiet
In my house, there's a set of three large bay windows that face the south. In 2020, I filled those windows with houseplants. I've got a money tree, an olive tree, a ficus tree and a few others that I don't know the names of offhand. Through the short days of the winter, the sun streams through that window all afternoon and makes the plants very happy.
Lately, I've been noticing how quiet the plants are. They just sit there and wait for the sun to shine and then when the sun goes away, they just keep sitting there being plants. They're so happy and so quiet. I've got a lot to learn from these houseplants.
Even though I've got constant ringing in my ears, my house is quiet. I'm grateful for that quiet. There's no TV blaring, no NRP pumping in the news and no stereo system filling the space with sound. It's just the plants, quietly soaking up the sun and providing a friendly jungle for me and my cat, Willie.
Thank you so much for reading. I hope you’ll leave your J-Q gratitude list in the comments… or just say hello. I love to hear from you. Have a great Saturday and as always, enjoy living in that body of yours. Look forward to next week when it will be “R” through “Z".” Have a good week. All the best, Hal.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is Living in a Body. Please click the play button above to listen to the podcast version of this publication. It includes original music played on the RAV drum! Also, I’d love it if you’d share this post with one friend. Thanks!!
Alphabet of Gratitude, Part One
As we approach this season of Thanksgiving, I’ve decided to write an extended alphabet of gratitude. Over the next three weeks, from letter “A” to letter “Z,” these are some of the things for which I’m grateful. Today, we’ll cover the first third of the alphabet —from “A” to “I.” Please feel free to share your A-I gratitude list in the comments.
A for Apples
What better place to start an alphabet of gratitude than with apples! Each week at the Haymaker Farmers Market, I buy a half peck of honey crisp apples from the Woolf's Apple farm. At seven apples for seven dollars, my mom would say they're a bit pricey. But I know that when I buy local food, it makes me feel good. It’s such an easy way to support a cause that I truly believe in. Plus, the apples taste so much better than the ones I buy at Giant Eagle. The Woolf's are an actual family that bring their apples to market in big wooden boxes. Then they fit them nicely into half peck cartons. I generally eat one a day, so I look for the medium sized apples -- not too big and not too small. Sometimes I slice an apple like a loaf of bread and I take sweet little bites from each slice in a circle around the core. It's apple season in Ohio and I'm grateful.
B for the Blaze
I may be a Pisces, but I've got a fire burning on the inside. I recently heard it referred to as the "blaze." It's that inner urge to create. It's the writer in me yearning to put the story into words on the page. Sometimes I'll be lying in bed or soaking in a bath when the idea strikes. Sometimes, when I'm lucky, the blaze takes over. At my laptop, I speak the words out loud like I’m solving a spoken word puzzle. And sometimes the piece starts to write itself. The blaze is a combination of love, loss, joy, grief and wonder and it's light reaches far beyond that little boy in me with his insatiable search for approval. Sometimes, the words I write touch a glimmer of the truth. I'm grateful for the blaze in me that burns.
C for Caroline
I called my sister the other night when I was in the middle of an emotional breakdown. She was out walking her dog, Bogie. Once again, she picked up the phone and listened to her brother spill out the anguish of living with ME/CFS. "I don't know if I can handle it, KK." With all the steadiness of the wise woman that she is, Caroline listened. She consoled me with great sisterly compassion. When I apologized for my tears, she made it very clear that I'm her brother and that she's there for me. The way she responded reminds me of a song I wrote for my dad at his death. The song goes, "The way you held me when I was crying. The way you said 'I'm here for you, son.' That's the reason why I love you so bad. You're my home, dad." I'm grateful for Caroline. She’s my home. She reminds me of my dad. She believes in me and she keeps telling me how strong I am. But I'll tell you the truth -- Caroline's the strong one.
D for Doors
I live in a beautiful old foursquare home that was built in 1914. Even the doors were made in 1914. Can you believe it? These doors are over 100 years old. They're solid, heavy and oak and they still open and close just as smooth as they did in the 1920's. The hinges have never needed a drop of oil. I'm grateful for these doors.
The house also has some grand pocket doors that separate the dining room from the downstairs entryway. Unfortunately, one of the pocket doors has been off the track since we moved in, so I usually keep them tucked away. But when I really want to show off the house, I use a little muscle to pull out both doors. They never fail to impress. Oh, and did I mention the hard oak floors with the inlaid cherry highlights? Yep. We were happy to discover that underneath the wall to wall carpeting when we moved in to the place. They don't make houses like they used to. I’m so grateful for this one.
E for Energy
Here's some irony for you. I'm a highly energetic person who thrives on energy but who lives with a chronic and debilitating deficiency of energy. The essential problem of ME/CFS is a failure of the body's energy system. Studies have shown that the mitochondria in ME/CFS patients don't work the way they're supposed to. When for healthy people, exertion of energy makes them stronger, for patients of ME/CFS, exertion of any kind can make us sicker. Today, I'm grateful for every little ounce of energy that I'm given. I'm grateful to type these words and to be able to raise my arms above my head. I'm grateful that I've been walking up and down the stairs lately without the use of my chair lift. Living with ME/CFS, it no longer makes sense for me to take energy for granted. My prayer is to be content with the energy that I have and to use it wisely. I’m grateful for this energy.
F for Float Tank
The first time I ever got into a float tank was in Boulder, Colorado. I knew instantly that I wanted one of these things in my home. But where would I possibly put it? I mean, float tanks are practically as big as a small car... or a large coffin. I found a float tank for sale in St. Paul, Minnesota and I asked the owner to send me the dimensions. Miraculously, at four feet by eight feet, this "Samadhi" tank would fit perfectly in my walk-in closet — the closet that shares a wall with my upstairs bathroom. All I'd need to do would be to knock a hole in the wall, put in a small door and rent a u-haul to drive this thing back from St. Paul. So, that's exactly what I did. Then I loaded it piece by piece through the second floor closet window.
The float tank is my daily retreat into the womb. It's warm, quiet and pitch black. Ten inches of skin temperature water and 500 lbs of epsom salt soothe my chronically exhausted body. I go there every afternoon for deep rest. To tell you the truth, I'm thinking about spending the whole winter in my float tank. If you don't hear from me in the next few months, you know where I'll be. But please, be sure to come get me in March for my birthday. I'm grateful for my float tank. Believe it or not, it got me quoted in the Wall Street Journal in the luxury homes section of the newspaper. Read the article here.
“Other float aficionados are taking a more budget-savvy approach. This summer, musician Hal Walker installed a used commercial tank made by Samadhi in a large closet behind the master bathroom in his Kent, Ohio, home. Mr. Walker, who is 52, paid $7,000 for the tank, which retails for around $14,000, and spent another $5,000 on installation and upgrades, including a more heat-efficient window. ‘It’s worth it.’ said Walker” - Wall Street Journal, Luxury Homes
G for the Game of Go
Every Wednesday night this fall, I've been going down to the Last Exit Bookstore to play Go with my friend David. He beats me almost every time, but we've gotten to be good friends around the game. We carry with us into town a humble board with 361 intersections and bamboo containers of black and white stones… and then we battle. Go is a complex game of war that takes an hour to learn and several lifetimes to master. Having played it for many years, I'm often frustrated at how slowly the mastering seems to be happening for me, but it's a great way to spend an evening with a friend. I'm grateful for the game of Go and I'm grateful for my friend David. He and I are well matched. I usually have a good start to the game and then somewhere along the way, I get greedy. I try to take too much and I end up losing everything. It's true what they say, "As in Go... the same in life." Someday I'll learn my lesson.
H for Hallie
Believe it or not, I've got social anxiety. The farmer's market is my one big social event of the week and I find it to be quite challenging. I'm embarrassed to admit that there's always a part of me that hopes that I don't run into anyone I know. Last Saturday though, I had a wingman -- my daughter, Hallie. With Hallie by my side, I was much more at ease. I wasn't as self-conscious riding in my wheelchair and I wasn't as nervous about running into people that I know. When we found ourselves in a social circle, Hallie held her own so nicely that it took the pressure off of me. I'm so grateful for Hallie.
But she's so much more than a wingman. She's a shining light in my life. Hallie visited from Brooklyn last weekend and we had such a nice time together. I picked her up at the airport. We went out to dinner. We watched a movie. We played Yahtzee. We learned the chorus of a song together and I even got to give her a lesson in playing the khaen. By the way, the video of us playing the khaen together has 750k views on TikTok right now. On Monday, I took her back to the airport. I said, "I love you, Hallie" and she walked off with her backpack to catch her plane. I love being Hallie's dad.
I for Income
The timing couldn't have been better. As you probably know by now, in 2021, my health took a severe turn for the worse. Since then, I’ve lost my ability to do the work that I’d been doing for the last 25 years. Fortunately though, right before all this happened, my song Low Key Gliding became a viral hit on TikTok. I collaborated with a couple music producers and we made a couple “remixes” of Low Key Gliding that have been streamed millions of times on streaming services like Spotify. Thanks to the success of these remixes, I have a pretty good regular income while I lie here in bed. I’m so grateful for the income.
I’m also grateful for those of you who have chosen to become paid subscribers of this publication. If you haven’t upgraded yet, I encourage you to consider it. The benefit that I offer is that you get to feel the satisfaction of supporting me in this writing endeavor that I’ve embarked upon. Though it only shows up in your email about once a week, I’m working very hard behind the scenes. I’ve turned this venture into at least a half time job. But I’m grateful for the work. To tell you the truth, I don’t know what I’d do without it. Whether or not you’re a paid subscriber, thank you so much for your reading. I’m really grateful that you’re here.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
That’s episode 41 for you. Next week, we’ll go from J to R and the week after that, we’ll go from Q to Z. That’s gonna be a tough one. I mean what starts with Z? I’m gonna have get a dictionary out for that one. Have a great Saturday everybody. Happy Thanksgiving and don’t forget to enjoy living in that body of yours. Again, I invite you to leave your own gratitude list in the comments. This week’s letters are “A” through “I.” ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Thank you for being here.
Georg and Hal
My Best friend in late elementary school was my next door neighbor at the time, Georg Baumann. Last week, I called Georg on the phone and we talked for about an hour. He's in Rochester, New York now. The Walker and the Baumann families have stayed in touch over the years, but Georg and I haven't really spoken for more than a few minutes since sixth grade. I'm grateful to be connected again. As grown men on the phone, we had such an honest and enjoyable conversation. By the end of the call, we were each expressing an interest in rekindling our long paused friendship.
In 1972, my parents packed me and my three sisters into our Volvo station wagon and moved us from the south side of Chicago to the west side of Kent. With a little help from my grandparents, mom and dad were able to afford their dream house on the Beech Drive/Norwood Street circle. It was a 1950's ranch with majestic trees for climbing and lots of open space for exploring. We were just a stone's throw up the hill from Longcoy Elementary School. I could roll out of bed, run across the Akron Right-of-Way and skip down the hill right into my second grade classroom. These days, due to my illness, I don’t get to visit my mom's house all that often. But for 50 years now, I've had the privilege of calling that ranch on Beech Drive "home."
It took me a couple years, but eventually, I realized the joy of having a boy about my age living in the house right next door. It wasn't just any boy though, it was Georg Baumann -- one of the great young inventors of the 20th century. Georg was a couple years older than me, but we had similar temperaments and we were just about the same size. In late elementary school, we became the very best of friends. Looking back, as a duo, Georg and I were unstoppable.
The Baumanns were first generation immigrants from West Germany. They moved from Dortmund to Kent, Ohio in April of 1970, just two weeks before four students were killed by the National Guard at Kent State. On our recent phone call, Georg recalled the profound impact that the May 4th shooting had on him and his young family. I can just imagine -- Mr. and Mrs. Baumann and their two children, strangers in a strange land, greeted with lockdowns, riots, shootings and the National Guard. Thinking that the US was a peaceful and stable place, the Baumann's showed up right in the middle of the turmoil of 1970.
Georg and his sister Kathrin arrived in Kent speaking no English. He remembers that for the first few months of first grade, his mom, Elsbeth sat right next to him to translate the lessons. I love the comforting sweetness of that image. But Georg also shared with me the story of bullies calling him names on the playground. With no other German families around, the Baumanns were like aliens. The mean kids called sweet little Georg derogatory names like "kraut." It touched my heart to hear these recollections for the first time. I guess it's these early life stories that helped make Georg the man that I admire so much today. Thanks to the tutoring of Georg’s teacher Ms. Young, by the end of the first summer, Kathrin and Georg were both fluent in English. Just a couple years later, when the Walker family arrived with three girls and a boy, a lifelong connection between two families was born.
Georg remembers meeting me for the first time. Interestingly, I was sick in bed. He came over to pay a visit and the first thing that he noticed was the calendar on my wall. The fact that it was a Tolkien themed calendar gave Georg a good feeling about the potential for our friendship. To this day, I've never seen the movies, I've never read the books, and I know very little about Tolkien, but apparently I had the calendar on my wall. This calendar was actually the impetus for Georg to become one of the biggest Tolkien nerds on the planet. Georg still has the calendar in his possession as the cornerstone of his vast collection -- complete with my original handwriting and all.
Georg and I became inseparable. I'd dial his number on the phone and when his mom would answer, I'd say politely, "Hello. May I speak with Georg?" When Georg would pick up, the boy in me would come alive, "Hi Georg... you wanna play?" Within seconds, we'd meet at the halfway point for our next adventure. There was no fence between our yards -- just grass and trees and sun and sky. We had the whole neighborhood for our roaming -- that is, as long as we didn't set foot in Mr. Casto's yard. That was our only limitation.
The Baumann's house was an exotic mystery to me. In the home, among themselves, they spoke mostly German. My friend's name was Schörschchen which is the diminutive for Georg. There was "Big Georg" and there was "Little Georg." Every morning, they ate homemade German waffles with anise flavoring. They kept german candy in the candy drawer and Georg's mom sunbathed topless in the backyard -- German style. When Georg and I would play in the basement, Mr. Baumann would sometimes call us into his office to quiz us on Math facts. I was younger than Georg and not quite as smart, so I remember being mildly terrified as Mr. Baumann questioned us with his stern German accent.
Georg and I were creators. Back then, we didn't have video games and we weren't that interested in TV, so we had to make up our own fun. In fact, we created our very own book called, "The Nothing to Do Book." It still exists somewhere today. This was a spiral bound Kent State manila notebook where we listed categories at the top of each page. The categories were objects like BALL, BIKE, FRISBEE, RAMP, and TIRE. Below each category, we listed the names of the games that we invented. Interestingly, there were no explanations and no rules written on the page. I guess all those details were stored in our young impeccable memories.
“Fris-cycle” was one of the most memorable games. One player is on a bike and the other player is throwing a frisbee. The object was for the frisbee thrower to strike the bike without hitting the person riding it. If the rider was able to catch the frisbee, then the roles were reversed. Georg and I don't recall if there was any scorekeeping or if there was ever a winner to the game. It seems that the point of Fris-cycle, like most of our other games, was just the endless freedom of long summer days spent playing with a best friend.
One of our greatest triumphs was the creation of a Frisbee Golf Course. This was a nine whole course that combined our two spacious backyards and the Akron property that spanned the area between us and the elementary school. We painted white lines around trees to signify each hole. I remember the first hole that teed off from Georg's deck. You had to throw the disc between two tall cypress bushes and aim for the cherry tree in the back. As I write this almost 50 years later, the white lines on the trees have long since faded. But I can still feel the amazing feeling when one of us would score a hole-in-one on that very first throw.
We had to make sure that the frisbee didn't land in Mr. Casto's yard. Mr. Casto was very particular about who set foot on his grass. I kinda wish I could meet Mr. Casto one more time. I'd love to find out if he was really as mean as I remember him being. I’m certain there must have been some warmth beneath his persnickety approach to lawn maintenance. Mr. Casto will live forever in the fabled story of my early life there on the Beech/Norwood Circle. I mean, who could ever forget Mr. Casto, Mrs. Woodring, Mrs. Clarke, Marylou White, the Troyers and, of course, the Petersons. (see Stolen Playboys)
In my parents basement, there was a large empty crawl space beneath the garage. The only way to enter this space was to climb over the plumbing and crawl through a big hole in the concrete block wall behind the water heater. For several days, my mom heard all kinds of commotion coming from the basement but she didn't inquire as to what was going on. Little did she know that Georg and I were in that dusty crawl space excavating, removing construction rubble and building cardboard walls. We were creating our Nothing to Do Book Clubhouse. It still exists today and the switchable light that Georg and I rigged up still works. In that secret space, there's a mural on the wall, some old carpet padding, a tire that was used as a lounge chair and a 1978 copy of the Guinness Book of World Records. I like to think about the day when the next owners of my mom’s house discover this clubhouse for the first time. It's like a time capsule from 1979.
Georg was a collector. He introduced me to the late ‘70’s craze of beer can collecting. I remember being so in awe of his collection that lined the windows and formed a pyramid on the wall. Georg’s dad would travel from city to city and bring back classy beer cans with cool designs. In order to keep them in pristine condition, Mr. Baumann would open the can from the bottom so the tabs stayed in tact. In terms of collecting, I was just a dabbler. My dad didn't travel from city to city. But I did have a few cool stamps, a few beer cans and some coins that my grandparents had given me. I could never live up to Georg though who, in terms of collecting, was the true master.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Georg and I were explorers. He was the first non-family member with whom I ever "touched tongues." It's a vague memory now, but Georg confirms that it did actually happen. In the place where the Walker's yard met the Baumann’s yard, Georg and I touched tongues and then we overreacted to the whole experience. It was just good old-fashioned curiosity between two pre-adolescent boys.
There's only one time that I remember Georg and I getting into any trouble. We had discovered the joy and the excitement of the slingshot. If I'm not mistaken, we made our own out of clothes hangers and rubber bands. On one summer evening, we were hiding behind some bushes on South Francis Street and we were shooting pebbles at the passing cars. Unfortunately, one of those unlucky shots smashed the passenger window of one of those unlucky cars. The car owner slammed on his breaks and chased us by foot through the neighborhood all the way back home. I made it home safely but I soon heard that dreaded knock on the front door. Georg and I were in big trouble. I don't think we ever did that again.
Sadly, in seventh grade, I abandoned my friendship with Georg in favor of a new best friend -- Dave Mastrionni. I'm ashamed to admit that when Dave made disparaging comments toward my old friend, I didn't stand up for Georg. Led by peer pressure, fear and insecurity, I joined in on the name calling. In our recent conversation, Georg and I both expressed our sadness that we went our separate ways. I'm not exaggerating when I say that as two young creatives, the partnership between Georg and Hal had earth shaking potential -- if only we'd stuck together. I'm sorry, Georg. I look forward to talking with you again soon. I send blessings to you and the whole Baumann family, especially in this time after the death of your dad. Well, Georg, I'm so glad we got plopped down next to each other all those years ago. Sincerely, your friend, Hal
Thank you so much for reading. Thanks for being here. Feel free to leave a comment. Tell me about your best friend as a kid. Tell me anything. I look forward to hearing it. As always, enjoy living in that body of yours. It’s not gonna be there forever. Have a good Saturday. ❤️ Hal
Follow me on Instagram. (165k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (61k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Send me a postcard: P.O. Box 1043 Kent, Oh 44240Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Thank you for being here. I hope you’ll click the PLAY button above to listen to the Podcast version of this publication. (11 minute listen) Also, feel free to share this post with a friend. Credit goes to Brad Bolton for the photos of the UU Church of Kent musicians in today’s post. Enjoy!
The Resignation
This morning, I wrote a resignation letter for my position as the music director of the Unitarian Universalist Church of Kent. This afternoon, I delivered it by hand to the desk of the Ministerial Executive Team. After more than 25 years as the church musician, this letter signifies the closing of a major chapter in my life. The reality of the resignation breaks my heart. It came so much sooner than I had ever hoped or expected. Here's what I wrote:
It is with a great deal of sadness that I offer my resignation from my position as the music director of the UU Church of Kent. With the current state of my health, I'm unable to perform adequately the duties of the job.
It has truly been my honor and my joy to serve in this capacity for all these years and I will miss the work greatly. Please let me know what I can do to best support the music life of the church for now and in the future.
After 25 years on the job, there's so much more that I could say, but for it's purpose, the letter says enough. I've been on unpaid leave of absence for over a year now, so I've had time to get used to this idea. But seeing it in print makes it real. The fact is that I'm not well enough to do the job and it's time for me to let go.
After I composed the resignation, I took my scooter over to front campus and I poured out some big tears. It wasn't supposed to go like this. I loved being the music director at that church. It was a perfect fit. I mean I was supposed to turn into an old man doing that job. I imagined myself someday celebrating 50 years of gathering around the piano and leading the Kent congregation in all our favorite hymns. I figured they'd have to pry those black and white keys away from my piano playing hands before I'd be ready to go. But ME/CFS had a different plan. I'm 56 years old and just as I was coming into my stride, the illness brought me to my knees. I'm disappointed, I'm angry and I'm sad.
The best thing about my work at the UU Church of Kent is that often, it didn't feel like a job. For me, it was more of a lifestyle. For the last 25 years, I'd just show up week after week to do the thing that I enjoy doing the most -- making music with others. The music ensembles were like an extended family. The church building was like a home away from home. There's no doubt that I'm gonna miss those weekly rehearsals and the after hour visits to the sanctuary, but I'll be forever grateful for the way that church gave me a chance to grow into the musician that I am today.
I realize that at some point, everyone has to retire. Everyone has to clean out the office, pack up their stuff and let the next guy take over. I suppose the lucky ones get a farewell party with gift cards to congratulate them for a job well done. But when the party's over, eventually everyone has to go home. No matter who you are, in the end, you have to fade off into the distance. I just didn't ever imagine that it would be me... and at such a young age.
Of course, in the grand scheme of things, I'm not planning on fading off into the distance any time real soon. I have a creative spirit in me that just won't quit. Though my music is much quieter these days, I'm still an artist. I'm still a musician. I still wake up every day with all kinds of big ideas going around in my head. No matter the illness, I can't imagine ever retiring from that.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
In 1995, I was living in Kent and teaching "movement" part-time at the Spring Garden Waldorf School in Akron. Shannon and I were living in a little off-the-grid bachelor pad called the coop. It was just a two minute walk to the Kent Natural Foods Co-op, which was my other part-time job. One afternoon, I was at the KNF eating maple almond granola right out of the bulk bin when my dear friend Jan Olds stopped in to say hello. She let me know that they were looking for a musician down at the UU Church of Kent. I was certainly familiar with the UU's, but I'd never been in the sanctuary. I'd taken a few Tuesday night yoga classes in their basement and I knew the congregation to be some real good folks, so I agreed to show up the following Sunday to play a few songs. After I played, they hired me right on the spot and I've been there ever since. After a couple years as the official "church musician," I was eventually promoted to the title of Music Director.
I appreciate the organic way that the music program developed over those many years. When I started, it was a one man show. I was a pot smoking folk singer who luckily had taken 10 years of piano lessons as a kid. I struggled to play the hymns as they were written, so I quickly learned the faking technique. In the early years, I would choose the music for the day on the drive to church that Sunday morning. I honed my improvisation skills and I used them to cover my ass for my unpreparedness. Except for a few outspoken critics, the congregation was incredibly accepting of my unconventional and folksy ways. We were a good fit.
One time, Rev. Julie-Ann pulled me aside to let me know that a few congregants were concerned about the holes in the butt of my pants. They wished that I would put more care into the way that I presented myself on Sunday mornings. I came back with a self-righteous and defensive response. I let her know that in the spiritual realm, the clothes that I wear don’t matter. I was above this concern for the surface of things. In truth, I was too overwhelmed with life and too hungover from marijuana to go buy some new pants. It wasn't until years later that I discovered the joy of dressing up on Sunday morning and wearing pants that didn't have holes in the butt. I'm sorry to say that with this illness, all my nice clothes are hanging in the closet and I spend most of every day in my pajamas.
After a couple years, we started a choir. Week after week, we turned that choir into a family. Over time, I learned how to run a rehearsal and the choir learned how to follow my waving arms. I've never taken a conducting class, but I learned ways to connect powerfully with the choir from my place in the front. There were many times when our singers took up the whole front section of the church. We filled that sanctuary with a huge choral love that came deep from the heart. I'm so grateful for all the choir members who came through the doors for those Sunday night rehearsals. I'm especially grateful for the core group of singers that stuck around for many years. You know who you are.
Time went on and I cleaned up a little bit. I got myself some new shirts and new pants and the music program continued to grow. We started the Fallow Time Folk Orchestra, the Golden Tones of Real Beauty and the UUCK Tone Chimers. I learned the powerful joy of being prepared. I discovered that when you show up week after week to rehearse, amazing musical things can happen. From Thanksgiving to Christmas and from Easter all the way to Music Sunday, the musicians and the singers in that church showed up to rehearse. Those folks made my job so enjoyable and so satisfying. Though I did get better at planning, the members of the ensembles got used to the fact that sometimes my best ideas happened at the last minute. They didn't always love me for it, but we always survived. We usually just laughed it off and set our minds toward the following Sunday.
As the music director of the UU Church of Kent, one of my greatest joys was working with the wonderful ministers of the church. I will forever be grateful to Rev. Julie-Ann Silberman-Bunn, Rev. Melissa Carvill Ziemer and Rev. Steven Protzman for challenging me, ministering to me and encouraging me in the work that I loved so much.
They say that when one door closes, another door opens and I'm trying very hard to believe it. I wonder what door will open for me next. As I lie here in this bed, I stare at the same door all day long and it's usually wide open. But with this illness, at times, it can be a challenge to put on some shoes and just walk through the door. The limitations that ME/CFS offers have been disheartening, shocking and painful. But I must say that I'm grateful for what I've been able to accomplish from this office in bed. Maybe I'll write a book someday. Maybe I'll call it "Living in a Body." Maybe I'll touch a few hearts and maybe I'll inspire thousands. Or maybe I'll learn to be satisfied with being just another angel in this human choir of life. I can't wait to find out.
These days, on a good day, I'm glad to say that I can get out of bed and make it to the church on Sunday. I remain seated for the hymns and my lungs aren’t strong enough to sing along, but I'm grateful to have somewhere to go on Sunday morning. I know the church will be there for me as long as I need it. Thank you to the congregation of the Unitarian Universalist Church of Kent for having given me so much.
Thank you so much for reading. As always, enjoy living in that body of yours. Have a great Saturday. ❤️ Hal
Follow me on Instagram. (165k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (61k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Send me a postcard: P.O. Box 1043 Kent, Oh 44240Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Thank you for being here. I hope you’ll click the “Listen Now” button above to listen to the Podcast version of this publication. (12 minute listen) Also, feel free to share this post with a friend. Enjoy!
If I Were a Poet
On Tuesday afternoon, riding on the middle path of Kent State University's front campus, I was overcome with beauty, grief and regret. Deep tears welled up from the wide ocean of my being. When I got to the fashion museum, I turned around to ride the path a few more times. As if the majestic Oak trees were asking me to feel these feelings all the way through, I bowed before their request. As I rode, it was the autumn who offered me her comforting assurance. The shimmering afternoon sunlight through the trees seemed to say, "This, my friend, is what it feels like to be alive."
As I continue to navigate the combined ache of aging, heartbreak and chronic illness, I think to myself there's got to be another side to all this feeling. So I keep returning to the middle path to feel some more -- one more pass through the autumn elegance of my hometown. Within my body, I’m carrying an era of healing after a year of loss, but in the great body, Ohio showed up to deliver one of the most beautiful weeks of the year. I'm grateful that I've had the strength to be outside soaking in it.
On Wednesday, after almost a week of stunning second summer weather, the rain finally settled in here in Kent. I settled in to do some writing. Thank you so much for joining me here.
If I were a poet, the words would fall on the page like the leaves falling from the maple tree in my backyard. I'd be the guy under the tree doing cartwheels while catching the leaves in both hands. I'd lay them out on a long table for all the children to see. The children would be the students from Davey Elementary School who walk by my house for their annual field trip of collecting leaves. This time they'd stop to say hello. With crossed legs on the sidewalk, they'd trace the leaves with paper and crayons. Their teacher would share some cool method that teachers have been teaching for generations and then their little hands would continue following every vein of every leaf variety in Ohio. While they were tracing, I'd be in the grass playing music. If I were a poet, the music would mix with the children's voices and the teacher would never tell them that they had to be quiet.
For several days in row, I’ve been out exploring the Fall on my three wheel electric scooter - to which I’ve recently given a name. I love this vehicle that I was inspired to name her. She deserves a name. By the way, my scooter has made it very clear that her pronouns are she, her and hers. She's very strong, very fast and very feminine. She zips around town like an NCAA sprinter. She offers me the freedom to fly around the city unfettered and I get to do it while exerting almost no energy. For a guy living with myalgic-ensephelo-f**n'-myelitis, this is a game changer. So without further ado, I'd like to introduce you to my three wheel scooter. Her name is Melba. Melba, as in Melba Toast. Melba, as in, "Hello, Melba. Let's go for another ride."
If I were a poet, I'd write a poem about Melba. I'd tell you the way it takes just eight hours to get her battery charged up and the way it takes just a turn of the key to turn her engine on. She's got fat tires all the way around and all her power is driven from her two back wheels. Sometimes in the evenings, I practice accelerating with tight turns that lift her up on one back wheel for several seconds at a time. For a middle aged guy like me, it's risky and exhilarating and it makes me feel young again. On bumps, she gets a little clunky, but when the path is smooth, it feels like we're gliding — Low Key Gliding. I can't confirm it, but according to the speedometer on my phone, me and Melba have gone as fast as 25 miles an hour on a downhill slope. Usually, Melba suggests that I wear a helmet. She cares about me that way. Melba loves Ohio and she especially loves late October.
If I were a poet, I'd know just where to begin to describe the beauty of late October in Ohio this year. To tell you the truth, you sort of had to be there. I guess if I were a poet, I'd make you feel like you were there. If I were a weather man on the other hand, maybe I'd start by talking about the temperature. On Tuesday, October the 25th, Kent, Ohio was an amazing 72 degrees and sunny. The sun was low and deep - deep like my tears. This time of year in my part of the world, the light turns a shade of orange that makes the whole town glow like the most perfect picture postcard you could ever hope to send home to your parents. Truly, the light is stunning.
If I were a poet, I'd share this second summer with you like we were in a dance. You, me and Melba, arm in arm, spinning through some of the most heaven sent Autumn colors that any of us has ever imagined. We three would dance right through the middle of it all. Of course, there'd be a band playing in the wind and the moves would be called by God. We'd celebrate the dance as if we were at an annual dance festival. All the festival goers would be camped out in tents and all the tents would ooze blended shades of many fall colors. In the late afternoon, we'd break out the canvases and the paint. The yellows, the blues, the oranges, the reds and the greens would explode on the autumn page like our hearts explode inside the beautiful brokenness of our dancing bodies.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
It may not seem like it from your perspective, but writing has been a real challenge for me lately. There are moments when this Substack feels like a burden. It's either that I'm running out of stories or that the stories are getting too close to home and too scary to tell. I mean, "what would they think if I said that?!" Melba and I talked about it the other day as we flew along the Cuyahoga River on the bike trail west to Munroe Falls. She said, "Maybe you should give poetry a try." I said, "Poetry? You know me, Melba. I'm no poet. I'm a musician. I'm a storyteller. I’ve written one poem in my life and I wouldn’t know where to begin to write another." Melba listened.
“Melba, I like telling stories where things happen. This happened, then that happened and then, can you believe it, after all that, this happened next. Often, the story ends with some parallel connection — a connection that gives the whole story a reason to be told. There’s usually synchronicity involved. But living with chronic illness, there's not a whole lot that happens. Alot of the time, it’s just me, home alone in bed. Sure, there's grief and beauty, color and light. There's wonder and tears. And there's a bunch of Zoom meetings -- and there’s the speed of your throttle, Melba, guiding us both through the orange light of October. But other than that, nothing much happens these days. If I were a poet, I’d find the poetry in all that." Melba's response was perfect. She just said, "I love you, Hal." I said, “Aw. Thanks, Melba.”
By Thursday, I had given up on my writing for the week. But I decided to go easy on myself and head out for another ride. After lunch, the sun came out and I hopped on Melba to see where she would take me this time. We did some nice wheelies in a local parking garage and eventually made it over to the Esplanade at Kent State. I stopped in at the Wick Poetry Center and acted like a student for a few minutes before heading on to front campus. I traveled my favorite quarter mile down the middle path and this time I didn't cry. In fact, this time, I think I was smiling. I turned a corner and discovered a hanging bench that I'd never noticed before. If I were a poet, I'd tell you all about that bench, but I'm just too exhausted. Trust me on this one and go see it for yourself sometime. I sat myself down on that bench and I put my feet up on Melba's saddle and I just stopped. For 30 minutes, I just sat there and I practiced accomplishing nothing. I listened to some chakra music in my AirPods and I looked out at the vast beauty of the sled riding hill, the old college buildings and the stunning fall colors. I felt relaxed, content and satisfied. Then I headed home.
At home, I was pleased to lie down for another half hour. I felt like I was glowing in my lack of accomplishment. When I got up, I sat down at my laptop and I wrote a title. It started, "If I were a poet..." And then these paragraphs just started flowing out of me. I started shaping, carving and sculpting the words and the paragraphs — kinda like a poet. I don't know if it qualifies as poetry or not and maybe that doesn't matter, but I know this writing came from a place of enjoyment. It came from a place of allowing myself to feel the feelings and allowing myself to accomplish nothing.
If I were a poet, I'd say thank you. Thank you for these words. Thank you for the mystery of this creative process. Thank you for the struggle and the breakthrough. Thank you for the illness and thank you for all the feelings. Word by word, paragraph by paragraph, we're gonna get through this. You, me and Melba.
Heck... maybe I'm a poet after all. Melba says, "Whoa, Hal. Don't get ahead of yourself now." And then she laughs out loud. Thanks everybody for reading and thank you so much for listening. As usual, have a wonderful Saturday and enjoy living in that body of yours. ❤️. Hal
Follow me on Instagram. (169k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (61k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Send me a postcard: P.O. Box 1043 Kent, Oh 44240Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi! I’m glad you’re here. Click the play button above to hear me read the story. Thank you so much for your support. I hope you’ll share this post with one friend. Thank you! Hal
Listen
As I was writing in bed this morning, the sound of a bird outside my window broke through the clouds of my morning meanderings. I heard the nearby call and it made me quiet. I paused my writing just to listen. The listening woke me up into the moment and I experienced a clear sense that I'm not alone. Then I kept writing.
I have a confession to make. I'm a poor listener. I'm good at a lot of things, but listening is not one of them. Hand me a frisbee to throw, a harmonica to play or a paragraph to edit and I'll show you how it's done. But ask me to listen to you tell a story for seven minutes and I'll humbly admit that I'm just not that good at it. There's probably some sort of diagnosis for my condition. I don't know. But whatever it is, I've known this about myself for a long time. I'm glad that today I get more chances to practice. I'd love to hear what you do in order to be a better listener.
Of all the skills in life, I believe listening to be one of the most important -- especially as a writer, especially as a musician, especially as a human being. Listening is the thing that connects us. It's the culmination of interest, presence and attention. It requires stillness in the mind, openness in the heart and patience in the body. I don't mean to be too hard on myself, but these are all things that I could use more of. My difficulty with listening may very well be the source of the underlying loneliness that I've carried around for many years. I'm just too damn preoccupied with my own thoughts.
Bed-based and living with chronic illness, I'm grateful for the way Zoom keeps me connected to the world. Many times a week, I have the opportunity to practice listening. In 12 step meetings, I frequently get to hear people share honestly and vulnerably their story of recovery. Just as frequently, I zone out. I'm either planning my next big project, thinking about what I'm gonna say or thinking about what I just said. Too often, my brain just feels like mush. Yesterday, once again I found myself daydreaming and I tried something new. As a woman was sharing her story, I began to recap everything that she said. I stayed on mute as I spoke under my breath, "Ah...so you're visiting your family in Grand Rapids ... I see. In your visit, you're doing a lot of moving from house to house... mm hm. And thanks to your sobriety, you're able to go with the flow of traveling...I get it." This method worked for about three minutes until I was completly exhausted. At that point, I took a break and I let my brain go on a well-deserved tangent. I really hope that I'm not hopeless in my endeavor to become a better listener.
For all my years of going to church on Sunday, the sermon has always been the greatest challenge. It goes all the way back to being a kid with my dad in the pulpit. He'd start preaching and I'd tune out. In church, I generally do well with the hymns, the silence and the ceremony, but when it comes to the sermon, I need help. Heck, I even have a hard time listening to the "Time for All Ages." At the beginning of the message, I'll say to myself, "OK Hal. You're gonna do it this time. You're gonna listen to this whole thing. Put your hands in your lap, focus your eyes on the speaker... now breathe... pay attention... relax… here we go." Then somewhere at the end of the first paragraph, the whole congregation breaks out laughing and I realize that I'm off in some other world having a conversation with myself. "Um...Could we please go back? I missed that whole section." I whisper to the person next to me, "What's so funny?" I'm a daydreamer.
When I'm at a poetry reading, the words go in one ear and then they come right out the other. Considering the metaphorical nature of poetry, it may not be the best setting to judge my capacity for digesting words, but I have a sense that I'm missing so much. I'm better at grasping the melody of the voice and the vibe in the room than the actual words that are coming out of the poet’s mouth. The words are like a jumble hitting my ears faster than my brain can make sense of it all. When it comes to listening, I have the attention span of a 15 year old Tik-Toker. It would help if I could hear the poetry in 15 second loops that play over and over again until I swipe to the next poem.
Even everyday conversations can be challenging for me. I can certainly be pleasant, agreeable and smile a lot, but the listening is a whole different story. It may not look like it on the outside, but inside, I'm often trying to figure out how much longer I need to stick around until I can make a graceful exit. Living with chronic illness, conversations usually fill me with a strong need to go lie down somewhere. Of course, it's always best when I can be honest. I've been known to ask for a rewind when I get distracted and I've also been known to lie down right there on the spot when I get exhausted.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
I'm not telling you all this cause I'm proud of it. I'd rather be offering listening tips after having solved the listening problem. But I gotta tell the truth, the wiring in my brain needs work. I could blame it on the myalgic ensephalo-f****n'-myelitis or I could blame it on the constant ringing in my ears. I could also blame it on all the marijuana I smoked back in the 90's. But finding the blame doesn't really help solve the problem. What I need is a miracle.
Lately, I've experienced a couple miracles. This morning, it was the call of the bird that woke me into the moment. Last week, it was an interview I witnessed with Irish Poet David Whyte. Everything out of this guy's mouth sounded like a truth that I should of known a long time ago. With his stunning bass voice, he was so utterly profound that I found myself hanging on his every word. Last week, I was convinced I'd found a poet who quiets my churching brain and delights my easily distracted ears. He made me long to sink into the listening.
The next afternoon, I let my whole being sink into one of his essays. At 70 autumn degrees, it was a gorgeous day in Ohio. There was a warm breeze and the sun was peaking through a mostly cloudy sky. The trees were exploding with fall colors. I parked my scooter down by the river and found a spot in the grass to lay my body down. In my headphones, I turned on David Whyte's reading of a 400 word essay called "Alone" and I closed my eyes. Suddenly, the world stopped and all my focus came to the flicker of sound between my ears. I was listening with the hungry delight of a child.
“Alone is a word that rings with a strange finality, especially when contained in that haunting aggregate ‘left all alone.’… The first step in spending time alone is to admit how afraid of it we are.” - David Whyte
Lying in the green space below the Main Street bridge, I soaked in the sound of my aloneness. Tears welled up in my eyes from the profundity of David Whyte's words. Set apart from the bustle of the city, I embraced this moment alone.
When the essay was complete, I got back on my three wheeler and I followed the bike trail to Scribbles -- my recent favorite place for decaf green tea and writing. I found a seat by the front window and I checked my phone. Waiting there for me was an email from my friend Laurie with the subject, "Photo of the Day." With a thoughtful message, Laurie was sending along a photo that she'd taken of me just minutes before. It turns out that I wasn't alone in that listening time with David Whyte. Laurie had joined me from the bridge.
There's a miracle in the listening. When I listen, I can hear the whole town moving and shifting around me. When I listen, I become part of something so much bigger than myself. There's a river and birds and a whole family of humanity chirping their way through the day. Guess what, Hal, you're not alone. Sh... Listen.
I wrote a song called Underneath the Surface that was my dad's favorite. It's all about listening. The lyrics go like this:
"Listen for the whisper rolling thunder all around you.If you do it'll turn into a memory to hold. Listen for the rocks, trees and the bumblebees around you. Everywhere you know that there's a story to unfold. Underneath the surface, hidden down below, there's a story waiting. Listen and you'll know.” — H. Walker
Thank you so much for listening. Thank you for reading. I guess the challenge is never to give up. It's never too late to learn something new -- even if it's something so basic as listening. Whatever the case, today's a great to practice. Enjoy. Have a good Saturday. ❤️ Hal
Follow me on Instagram. (169k followers) Hang out with me on TikTok. (2.2M followers) Grow with me on YouTube. (65k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Send me a postcard: P.O. Box 1043 Kent, Oh 44240Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi! I’m glad you’re here. Click the play button above to hear me read the story. (11 minute listen) Thanks so much for your support. I hope you’ll share this post with one friend. Thank you! Hal
A Crewcut, a Cowlick and a Ponytail
For years, I've been daring myself to chop it all off. Haircut after haircut, I show up at the Great Clips in Stow with the idea that this time I'm gonna request a crewcut. Within the first few minutes of sitting in the chair though, I've always talked myself out of it. Then I go ahead and request "the usual." Pretty much every time, the hairdresser agrees that I probably look best with a little more hair on my head. I'm quite happy with the work they do over there at Great Clips. For 20 bucks, I come out looking clean and fresh and a few years younger. At this point in my life, I like a good haircut.
Last week, for the first time in my life, I went ahead and cut it all off. In a moment of inspiration, I dug out the clippers, picked out the no. 3 comb and I handed it over to my caregiver to do the rest. There was nothing ceremonious about it. I just took off my shirt, sat down at the kitchen table and Mango started cutting away. The clippers we used were cheap, so it took him about 20 minutes of patient clipping to get all the hair down to a tapered half inch.
When the job was done, a pile of dark blonde hair was lying on the kitchen floor and Mango had a big smile on his face. He was quite pleased with the work he'd done. I have to admit it's been a bit disconcerting to see my scalp showing through the buzz cut like it does, but I'm getting used to it. I look like a guy that's all ready to go join the marines -- big glasses, a long forehead and a half inch of hair all the way around. The haircut has gone over quite well on Instagram. One of my followers commented that I look like "the nice drill sargeant that everybody likes." I took that as a compliment. I suppose with this style, I could also pass as a buddhist monk or one of the cast members of Breaking Bad.
While I'm still getting used to it, my mom has made it very clear that she doesn't like it. Within a minute of posting a selfie in the family's text thread, my mom expressed her strong disapproval of the haircut. In words and angry emojis, she let me know that she won't be talking to me again until my hair grows back. She wrote that with the swipe of a pen, she has removed me from the will. Don't worry, mom. It'll grow back. I'll text you tomorrow. ❤️
When I was a kid, I hated getting haircuts. Practically every picture of me has my hair hanging way down in my eyes. I had a cowlick on the right side of my head that caused me so much anguish and it always got worse after a haircut. My bangs never lay the way all the other kids bangs lay. The popular kids didn't seem to have cowlicks. Their hair just sat real nice and straight down on their forehead. I wished so badly that I could just have regular bangs like everybody else. I also wished that I had brown hair. All the popular kids had brown hair.
I remember once my hairdresser noticed that I had chopped the cowlick all the way down to the scalp. She very kindly informed me that it doesn't do any good to cut it down cause it'll just grow back sticking straight up. I also remember attempting to part my hair on the opposite side of the cowlick, but that didn't work either. To tell you the truth, I can't understand why my hair troubled me so much. In all the pictures of me as a kid, I look so damn cute. My hair was perfect. I wish I'd worn those sweet blonde locks with confidence back then.
Today, I don't fight the cowlick. In fact, I like it. It does an excellent job of making a natural part on the right side of my head. With my crewcut, I like to feel the little spikes of cowlick growing up in the opposite direction as the rest of the hair. And by the way, my daughter has the exact same cowlick on the same side of her head and I love her madly for it. Hi Hallie. ❤️
In college, I had two main goals. One was to find a girlfriend and the other was to grow my hair long. As a freshman, I had a grand romantic vision. I pictured myself as a senior hanging out at the student center with a girlfriend and a long ponytail. In my fantasy, I wouldn't be alone anymore and all my insecurities would be gone. I'd finally be one of the relaxed popular guys and all the freshmen would think I was so cool.
When I made it to my senior year, only part of the vision had come true. I had successfully grown my hair out and I was able to wear it in a long blonde ponytail. I'm sorry to report though that it didn't solve the insecurity issue. It actually did give me a little boost of confidence, but I was still just a scared kid worrying about what everybody was thinking about me. If only I'd grasped the goodness and the potential in that sweet guy underneath the long hair, the homemade leather pouch and the maroon African dashiki that I wore practically everyday.
If I knew then what I’m still trying to learn by now, here's what I'd do differently. I'd make sure the barber and all my professors knew me by name. I’d ask a lot of questions. I'd dress smart and I'd stand up tall. I'd look people in the eyes and take a humble interest in others. I'd make the practice room my home away from home and I'd spend my energy studying music. I'd stay sober and I'd suck out every ounce of education that that beautiful lakefront campus had to offer. And I’d relax about the whole girlfriend issue. I realize that there's no going back now, but I guess I find some kind of pleasure in thinking about the way it could've been different.
As far as I recall, in 1987 on the Northwestern campus, there were only two guys with long hair -- me and David Schwimmer, the guy who went on to play Ross in the TV show, Friends. David and I played in a production of "Hair" together during our senior year. We were the only two male cast members that didn't need to wear a wig. David Schwimmer had the lead role and I was just a "sideline hippie," so I don't know that he ever noticed me. But I always felt like we were somehow connected by our ponytails.
By the way, I never did get the girlfriend. There were a few close calls in college, but none of them ever worked out. I did lose my virginity in my senior year though. Maybe I'll tell you about that another time... or maybe not. The girlfriends came after college.
After I graduated, I wore my hair long for about seven years. I wore it proudly as a kind of stamp of my membership in the counterculture. I was an artist and a rebel. I refused to get a haircut or to get a regular job or to do any of the other kinds of things that all the other adults in society were doing. In 1991, with my long blonde hair, I was waking up at noon wearing purple leggings with shorts on top and playing a drum in the middle of Kent while I judged all the people walking by in their banking clothes. The truth is I was scared. Underneath the long hair, I was lost and confused and scared. I just wanted somebody to notice me.
Shannon noticed me in 1993. We fell in love when we were painting dorm rooms on a Kent crew that was working down in Tallahassee, Florida. After going our separate ways for a couple years, we moved in together at the coop in '95. From the first time I walked into that place, I dreamed about living in the coop. It was the ultimate Kent bachelor pad. Shannon and I moved in there together and we split the 150 dollar rent between us. It was truly alternative living. I gotta hand it to Shannon. She was a real trooper for putting up with me and my unconventional ways.
One day when Shannon was off at her classes and I was getting high down at the river, I had a big inspiration. I decided to cut off my ponytail and to ask Shannon to marry me. In that moment, I was done with my childish ways. I was ready to settle down. I got out some scissors, cut off all my hair and I called my mom to see if she had a ring that I could give to Shannon. Shannon got home that evening and I had written the question in our shared journal. She said, "yes" and we began our brief marital journey that resulted in the birth of our only daughter, Hallie. That was the last of my ponytail. It's been over 25 years now. I've had short hair ever since.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
That's pretty much the whole story about my hair. I have noticed a few more gray hairs in my sideburns lately but the crewcut pretty much took care of that. For years now, I’ve struggled with flaky psoriasis on my scalp, but I suppose that keeps me humble. Other than that, the crewcut is about the most exciting thing that's happened with my hair in a long time. This week, it's shorter than it's ever been in my whole life and it sure is easy to take care of.
I appreciate you reading my story. It was fun to write. Hopefully there will be more stories where that one came from. Maybe on Tuesday you'd be willing to share some of your story in the next edition of "What's Your Story?" I hope so. Keep an eye out for that email on Tuesday. All the best to you on this beautiful October Saturday — wherever you are. Enjoy living in that body of yours and I’ll try to do the same. Thank you so much for being here. ❤️. Hal
Follow me on Instagram. (169k followers) Hang out with me on TikTok. (2.1M followers) Grow with me on YouTube. (65k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Send me a postcard: P.O. Box 1043 Kent, Oh 44240Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. This is part 3 in the coffee break series. Grab a cup of coffee or tea, sit back and enjoy. I hope you’ll share this publication with one friend. Thanks!
The Battle Between
I was the last person ever to see Ann Wigmore alive. She was up late sitting at the front desk of the Ann Wigmore Foundation on Commonwealth Avenue in the Back Bay of Boston. Right before bed, She and I exchanged a few pleasant words and then we wished each other a good night. I went up to my room on the second floor and "Dr. Ann" retreated to hers on the third. In the middle of the night, I was awakened by the loud blare of a smoke alarm. I raced to the third floor to check on Ann but I soon realized that there was too much smoke coming out of her room to proceed. Everyone in the house made it out to the sidewalk that night except Ann Wigmore. She died in that fire on Feb 16, 1994. Though I was stunned from the loss of a human life, there was a part of me that was relieved. I was finally free from the living food prison that held me there at 196 Commonwealth Avenue.
In the summer of 1993, I moved to New York to get discovered. I arrived in the city with big visions and great talent, but I lacked the basic life skills to make my dream come true. I'll tell you the whole story another time, but basically, I stayed up too late, smoked too much pot, ate too many muffins, drank too much coffee and spent too much money at the strip clubs. For a guy living with Chronic Fatigue Syndrome, this was not a good combination. I needed a cleanse. I needed a reboot of my immune system. I needed a major lifestyle change. That's why I signed up for a two week stay at the Ann Wigmore Foundation in Boston. Also known as the Hippocrates Health Institute, it was a retreat center that promised radical change through the living foods lifestyle.
Ann Wigmore was the wheatgrass guru of the world. Eating only foods that were alive with life force energy, she had rid herself of Cancer. At the Ann Wigmore Foundation, all forms of cooked foods were off limits -- no brown rice, no steamed vegetables, no bread, no meat and no dairy of any kind. Energy Soup, a blended concoction of enzyme rich ingredients, was at every meal. Fermented "rejuvalac" was the beverage of choice. Trays of sunflower greens, buckwheat sprouts and wheatgrass were growing on every windowsill and enema supplies were a staple in every bathroom. I'll never forget the smell upon entering that building for the first time. It was a living food shock to my caffeine, flour and sugar filled system.
I arrived in Boston's Back Bay in the Fall of ‘93. The Ann Wigmore Foundation was located in a grand four story townhouse on the corner of Exeter and historic Commonwealth Avenue. If you're so inclined, you can follow the Commonwealth median all the way to the Boston Public Gardens and you can stop to read history on the memorial statues along the way. It’s a beautiful street. The cross streets to Commonwealth run in alphabetical order. There was Exeter, Dartmouth, Clarendon, Berkeley, and Arlington — all the way to the Boston Gardens. Running parallel to Commonwealth Avenue is Newbury Street -- a coffee break haven of book shops, coffee shops and bakeries.
Being the spiritual guy that I was, before arriving at Dr. Ann's retreat, I stopped on Newbury St. for a ceremonial farewell to coffee and muffins. I walked into a coffee shop, breathed in the rich smells of my youth and I vowed a prayerful goodbye. I was entering a new phase of life -- a phase of healing through the living foods lifestyle. It was time to get serious about gaining back the health that was stolen from me with the onset of ME/CFS in 1991.
People came to the Ann Wigmore Foundation for all different reasons. In my two week stay, there were people there to heal from cancer, diabetes, obesity and addiction. Ann Wigmore promised miraculous results in two weeks and I was confident that I would be among one of those miracles. We learned how to grow wheatgrass, how to brew rejuvelac and how to make elaborate living foods desserts with avocado, dates, sprouted nuts and figs. We also learned the blessed joy of a detoxifying wheatgrass enema. The idea of living food as medicine and cooked food as poison was drilled into our brains as we were being cleansed. At the time, it all made so much sense to me.
Well, where do you think I ended up ten days into the living foods transformation? Yep. You guessed it -- Newbury Street. I failed the experiment. I couldn't last two whole weeks without my coffee and muffins. With all the depth of history and the purity of health available to me on Commonwealth Avenue, I couldn't resist the pull of Newbury Street. I fell three days short of the two week experiment. So what did I do? Yep. You guessed it. I got a job at the Ann Wigmore Foundation teaching the living foods lifestyle. Hal Walker, the king of coffee and muffins, was the instructor and the guide for the sick and the suffering who showed up in Boston to heal. It was a crazy few months.
I remember a terribly lonely Thanksgiving in Boston. I walked the cold, quiet streets on Thanksgiving night and stopped at Dunkin' Donuts on my way back to Dr. Ann's place. After transgressions like these, I would always vow to start the living foods regimen again tomorrow. I used wheatgrass enemas to purge myself of the poison sugar, flour and the caffeine.
It must have been quite evident to my house mates that I was not cut out for the living foods lifestyle. In the middle of teaching one of my classes on making energy soup, one of the students observed, “Hal, you’re mighty energetic today. You seem like you’re high on sugar!” They were right. I was high on sugar and probably high on marijuana, as well. It was a constant battle between the spiritual path of Commonwealth Avenue and the medicated path of Newbury Street.
I went home for a week over Christmas and I tried to sell my dad on the living foods concept. "But Dad, you don't understand. When everything you put in your body has living enzymes and life force energy, food has the power to heal. Food is medicine." My dad tried to sell me on the traditional American diet. "Son. My parents have lived for over 90 years on a diet of simple protein, vegetables and a starch. The key to a healthy diet is to grill a hamburger in a pan, boil some potatoes and boil some green beans." It turns out my dad was pretty right on about a balanced lifestyle, but I needed a few more years of research to find out. After all the Christmas cookies and coffee in Ohio, I returned to Boston for six more weeks of insanity -- back and forth between Commonwealth Avenue and Newbury Street.
My time in Boston wasn't all bad though. There was a beautiful 10 ft. Steinway grand piano in the main room that I enjoyed playing on my time off. I remember learning some blues riffs on that piano that I’m still playing today. On occasion, I would offer concerts to the guests. It was a beautiful room to play in. For one of the classes that I led, we read aloud from my favorite children's book, "Hope for the Flowers." It's a story of a caterpillar who lets go of the frantic climb for wealth and power and transforms into a butterfly. If you’ve never read it, be sure to check it out.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
After the fire, the Blue Cross gave us some grocery money and a place to stay for a couple nights. I guarantee that I didn't spend that money on living foods at the grocery store. I was free from it and I took the opportunity to load up on all natural peanut butter, cherry preserves, whole wheat bread and all my coffee break favorites. When the hotel stay was over, I lived in the burned out building of the Ann Wigmore foundation as the staff and I assessed the damage. The Steinway piano was destroyed. The smoke and water damage to the townhouse ended the life of the Ann Wigmore Foundation as we knew it. I'll never forget the deep smell of smoke that permeated the whole building. I slept there for about a week.
Eventually, I made the decision to move to Eugene, Oregon. My friend Warren lived there and I couldn’t think of anywhere else to go. So, I bought a one way Greyhound ticket west with plans for a brief stop in Ohio. I got off the bus in Cleveland and I waved goodbye to my bicycle-in-a-box as it travelled on to Oregon. After a few days in Kent though, I realized that I was home and I never did get back on that bus. Kent, Ohio called me home. Eventually, Warren arranged to send the bike back to Ohio and I decided to make Kent my home for good. I was living back at my parents in the Spring of ‘94 when I wrote my personal anthem, "Come Home".
“Come home, says the river, there’s no more time for wondering from city to city looking for the perfectly cool community to make me perfectly happy.”
On Tuesday, I’ll be featuring that song in the next installment of “A Body of Work.” I hope you’ll look out for that email on Tuesday.
I’ve been back in Kent for almost 30 years now. Can you believe it? I don’t drink coffee and I don’t eat muffins, but I’m still living in this body of mine. In so many ways, I’ve been so fortunate. In spite of living with ME/CFS for 30 years, I’ve had a very full life. I look forward to continue sharing the stories until they’ve all been told. Thank you so much for reading. Thank you for listening. As always, I hope you have a good Saturday in that body of yours and I’ll see you next time. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Thanks for being here. This is part two of a four-part series called “Coffee Break.” If you missed it, click here to read part one - “The Muffin Man.” This week, I’ve turned the microphone over to my mom, my daughter and my three sisters. Click the play button above to hear their voices.
Janet (Bestie)
I was first introduced to ‘Coffee Break' in 1958 when I worked at Norcross Greeting Cards in New York City, In mid-morning, the coffee girl roamed the floor of the working artists with a cart full of coffee, tea and pastries. I waited with bated breath for her arrival at my stall. In 1960, I worked in the advertising department of Scott, Foresman book publishers in Chicago. Every morning at 10:00 am, everyone on the 6th floor walked down to the cafeteria and lined up for coffee and pastries. Years later, while substitute teaching around northeast Ohio, I carried a thermos of coffee with half-and-half into every school that I visited.
When my husband retired and we were home together in the mornings, right around 10:30, we'd always break from what we were doing - Harold from his book and me from my artwork -- and meet in the dining room for coffee and conversation. I would do anything to have one more coffee break with my dearly beloved husband.
Julia
If there is any one thing that's emblematic of what it means to be a Walker, it is the heyday of the Walker Family Coffee Break. Every morning, at around 10 am, my Dad would start saying, “Janet, is the coffee ready?” Then everyone would convene in the kitchen or in the backyard. There were days when we’d still be sitting there at noon!
The fascinating thing about the coffee break is that it was a little microcosm of who we all were in relation to the family. My Dad presided. He loved when the conversation would veer to social justice, theology or philosophy. As Papa grew older and deafer, there were certain themes that he would return to again and again. It was critically important to him that we, his children, fully understand that human beings depend on ritual and metaphor to make sense of everything. It got to the point where we could almost recite Dad's coffee break mini-sermons by heart.
It seemed to me that the four of us siblings also brought our full selves to Coffee Break. To quote our family friend Karyn, I am the “short and loud” Walker, so there were many times when I would get checked by my siblings for monopolizing the conversation. There was a period where Hal was advocating for silent coffee breaks, where we would gather and meditate without speaking. Somehow, thank God, those never materialized.
My mom was in charge of making it beautiful. On a perfect morning, she’d bake a fresh batch of rhubarb coffee cake, there’d be plenty of half-and-half in a pretty pitcher, the table would be spread with a colorful tablecloth, and everything would be served on the Norwegian plates. She’s a gardener, and on Summer mornings, I would look around the backyard and think, “This truly is one of the most gorgeous places on earth!”
You could look at Coffee Break as an unhealthy indulgence (caffeine, white flour, and sugar!!), and even after I went decaf, that janky, buzzy 11:30 am feeling, after an extra slice or pour, is very familiar. But Coffee Break prioritized being together, with no purpose other than community and meandering conversation — well, that, and rhubarb coffeecake.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Johanna
I don’t know when the coffee break tradition began, but I know it was all about the longing for connection. As a white, middle class, Protestant family growing up in a Midwestern town, we performed “Happy Family” for the rest of the world. Everyone loved the Walker Family. But we were mostly living in our own little bubbles of isolation and loneliness, doing our best to make sense of the world, trying to figure out why we didn’t feel as happy as we looked.
OK... I speak for myself. That’s what I was doing. But I bet I wasn’t the only one. We didn’t talk about feelings in our family. But I know we all had them. I mean, aren’t we all up against that existential loneliness -- reaching for one another as best we can and not quite finding each other?
Enter: Coffee Break.
I think it started during college. My siblings as I were starting to connect as young adults. We were just figuring out that we were actual people. We wanted each other. We longed to pierce the performance of "happy family" and actually be one, but we didn’t really know how to do it. We grew up dancing around intimacy, and not really having any.
Coffee Break was what we figured out. We brought our outstretched arms and reached across the coffee and the pastry and said “Hello! I’m here! Are you there? Where have you been all this time?! I WANT YOU!”
We clambered heart-first to the coffee break table longing to be heard, to be seen, to have a voice, to tell a story, to make someone laugh, to hear our parents finally say “You are enough.” Or we came to share thinking, ask a challenging question, poke the bubble, stir the pot, gossip. We came for the buzz of the coffee. We came for the connection.
Sometimes Dad would fall into a one-sided lecture. Sometimes Mom would get judgy and blaming. Sometimes Julie would just keep talking without pause. Sometimes Hal would slink away from the table and disappear. Sometimes KK would cry. Sometimes I would get belligerent and defensive and start a fight. Sometimes it was busy and fast-paced. (we were so happy to be together!) Sometimes we dropped into deep listening, where the weight of the air changed and we saw each other in a way we never had before.
Mostly we came to love, in the best way we knew how, jacked up on caffeine and sugar, we came to love.
Caroline
I have a very clear memory of walking by the “Teachers’ Lounge” at Longcoy Elementary School and seeing my 3rd grade teacher with a long Virginia Slims cigarette in one hand and a cup of coffee in the other. As a teacher myself, I don’t think I’ve ever taken an actual coffee break in a Teachers’ Lounge. (I’m not sure any teacher has time to “lounge” but that’s for another Substack 😉 ). Instead, I start the day with a travel mug and I take a sip here and there until it’s cold. When I’m home in Kent, I get to select one of my Mom’s favorite coffee mugs and settle in for a good old fashioned Walker Family “Coffee Break.”
Coffee break has always been a time to soak up the family, the stories, the love, the disagreements, the jokes and the things-we-wouldn’t-dare-say-outside the family circle. Of course, coffee break wouldn’t be coffee break without a dash of tricky family dynamics (once the baby in the family, always the baby). I typically don’t want coffee break to be over. I just want to freeze the moment — desperate not to lose the connection or maybe desperate to build a closer one. “Coffee Break” is a core memory for me. From coffee break of my youth on family road trips to coffee break with my own kids drinking sugar with a splash of coffee out of Bestie’s tiny, beautiful Norwegian demitasse. Then, way too soon, we found ourselves having coffee breaks around Dad’s hospice bed — soaking up every ounce of him and each other as the “original six.” These days, it’s not always the whole family. It’s often just my sweet Mom and me sitting quietly on the couch enjoying just being close. And that’s pretty special, too.
Hallie
I don’t drink coffee and never have, but I love coffee break. When I think about coffee break, I'm hit with the sense memory of Bestie’s house -- the Bestie-house smell, the Bestie-house tile under my feet, the sound of the Bestie-house back door opening and closing and the Bestie-house toaster oven heating up a nice slice of cinnamon swirl bread from Great Harvest. And of course, there's the Bestie-House Bestie weeding in the garden, surprised and overjoyed by my arrival. I'll never forget the Bestie-house sense of relief -- knowing “I’m home.”
One of my very earliest memories is having coffee break at Bestie’s house. I was probably four years old when she first broke out the little blue and white china tea set— two oz. tea cups, a lidded bowl of sugar and a pitcher of cream. She would give me a teeny, tiny drop of decaf coffee in my cup, which I would then fill to the brim with cream and several spoonfuls of sugar. Then I'd join the adults with my “coffee” and pastry to listen to their philosophical discussion. I know… so only child of me.
As years went on, coffee break never really changed. 10:30am was coffee break as much as 6:30pm was supper at Bestie’s house. And let me tell you, coffee break on the Walker Family Vacations was like coffee break on steroids. Once a year, all the die hard coffee break members would gather for a week of coffee breaks together. Being the oldest cousin, I got to relive the teeny tiny drop of coffee in a tea cup every time a new cousin came of age. Charlie, then Lucas, then Anna and Hunter, then Leo… I think if you asked every one of them what their first memory of coffee break is, it would be that little blue and white china tea set.
In March of 2020 I found myself living in Besties house. I spent the first three months of the pandemic in the skylight room upstairs. Along with the rest of the world, these months were some of the hardest times of my life. I was only a few months away from graduating with a BFA in Musical Theatre and the entire theatre industry had evaporated. While I couldn’t see any of my friends, I was staying up until 4am every night with crippling anxiety scrolling the newly discovered TikTok. In retrospect, it was actually a very special time. I got to share a house with my amazing grandmother who loves so deeply and cared for my every need. Completely unsure of what was next, I was frazzled and lost. In this time of not knowing, I knew I could count on one thing -- walking down to the Bestie-House kitchen at 10:30 in the morning for coffee break -- every single day. For that, I am so grateful.
Thank you so much for being here. Thank you for reading and for listening. Thank you mom and Hallie and Julie, Johanna and KK! Let’s do it again sometime. Have a good Saturday, everybody. ❤️ Hal
Follow me on Instagram. (165k followers) Hang out with me on TikTok. (2.1M followers) Grow with me on YouTube. (61k subscribers) I haven’t figured out Twitter yet, but I’m there. (354 followers) I stop by Facebook occasionally. (5.3k followers) My website is super old but I’m hoping to revamp it someday. Send me a postcard: P.O. Box 1043 Kent, Oh 44240Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
The Muffin Man
My Dad was a Presbyterian minister, but my family’s religion was the ten o’clock coffee break — strong coffee with half and half and a pastry. If it doesn’t qualify as a religion, the Walker family coffee break definitely qualifies as an institution. In fact, back in 2006, my mom made individualized batik t-shirts for every member of the family. Each unique shirt pictured a steaming cup of coffee and that family member’s pastry of choice. The text at the bottom read, “A Walker Family Institution.” In my family, coffee break runs deep. It’s a ceremony. It’s a ritual. And It goes back generations.
My grandfather, Papa Trostrud, preferred a bakery doughnut with his coffee. Papa T would follow it with a Lucky Strike cigarette and a chore list for the grandchildren. My mom, who carries on the 10 o’clock coffee break tradition to this day, prefers an apple danish. She always brewed Folger’s Dark Columbian, but she treats herself to a Starbucks on special occasions. My dad was less particular. He loved mom’s homemade rhubarb coffee cake, but he’d settle for some cookies from Aldi. Interestingly, my dad drank coffee everyday but had no idea how to brew a cup for himself. Mom was in charge of that.
When I was young, every summer, my family would drive 14 hours to Birmingham, Alabama. Two weeks a year in the south had a profound impact on my development as a human being. Sometimes we’d make the trip in one long day, so we’d leave home very early in the morning. Once we got on the road, right around 10 o’clock, my mom would break out the coffee and the pastries. From her thermos, she’d pour us each a little cup of coffee with a little bit o’ half and half. On a napkin, we’d get a piece of the pastry. It was the perfect combination — sugar, flour, fat and caffeine. I can almost feel it now — the way the whole car would light up and we’d all get happy. I can still feel the warmth of that morning sun in the window and the familial love of all six of us jammed in that blue station wagon with no seat belts.
My pastry of choice was the muffin. Some time during college, I became somewhat of a muffin man. I was the kind of guy that resented my home town for years ‘cause it lacked a quality muffin. When I first moved back home after college, I took the matter into my own hands. I started baking my own muffins. Without a recipe and without measuring cups, every day, I would end up with a different result. I'll never forget mixing up those ingredients in my mom’s kitchen — flour, eggs, honey, molasses, oat bran, brown sugar, banana, walnuts, salt, baking soda and baking powder. I’d eat six or eight of them for my coffee break and coffee break lasted all day long. Back then, coffee and muffins were my friend. They were my sustenance, my courage and my inspiration.
In the 90’s, the old Diner offered a good treasure bran muffin and a nice cherry almond muffin. But after the Diner closed, Kent had nothing to offer in the muffin department. I loved Brady’s Cafe for the atmosphere and the poetry readings, but Brady’s squeezed it’s muffins out of a bag. Just so you know, I refuse to eat a lemon poppyseed muffin that was squeezed out of a bag. When the Zephyr Restaurant opened, we finally had a good sweet bread in town. They used to sell me a whole bag full of bread ends for just a few bucks. I was quite satisfied with those ends toasted with butter. Hallie’s mom, Shannon and I used to enjoy Zephyr bread for coffee break when we lived in the coop. The “coop” was a legendary bachelor pad/rehearsal space that we lived in for about a year before we married. It was just a two minute bike ride for coffee and sweet bread from the Zephyr.
I think the muffins from Susan’s Coffee and Tea were probably squeezed out of a bag, too, but Susan’s did have some good strong coffee. I enjoyed the discounted price of the day-old muffins there, but I had to settle for low-fat apple cinnamon and morning glory. They were wrapped in plastic, spongy, microwaved and really mediocre. Thank God the low-fat movement is over. That was a rough time for muffins. I used to ride two year old Hallie in a bike seat over to Susan’s for our coffee break. We’d sit in the grass on front campus and eat day old muffins together. Hallie learned early about her dad’s love of muffins and her family’s commitment to coffee break.
I’m not even gonna mention the sweet bread at Starbucks — four dollars for a piece of bread? You gotta be kidding me.
I used to drive hours out of my way to Yellow Springs, Ohio as a kind of muffin pilgrimage. The “Good” muffin at the Emporium is truly the best muffin in the state. It’s the perfect combination of sweet, salty, nutty, chewy, crunchy and “healthy.” Add a strong cup o’ coffee with cream and the granola atmosphere of downtown Yellow Springs and I was in coffee break heaven. I spent several weeks as an artist-in-residence at Mills Lawn Elementary in Yellow Springs and I’d bring several "Good" muffins with me to school. My coffee break-in-a-bag and a styrofoam cup lasted all day long.
Like my parents, I probably could have gone on enjoying coffee and muffins for years without much consequence, but everything changed in the Spring of 1991. I got sick. On Friday morning, I ran my usual six miles, drank my usual coffee and ate my usual muffins. Then on Friday night, I performed at an open poetry reading at Brady’s Cafe. On Saturday, I woke up with weird symptoms in my body that never went away. Overnight, I became someone who couldn’t run across the street without needing to lie down. Overnight, I entered the world of chronic fatigue syndrome.
Finding no help in the medical profession, I began the process of trying to find a healing regimen on my own. With the help of a few books and my friend JP, I became convinced that it was diet that would reboot my immune system. It was diet that would cleanse the toxins from my body and it was diet that would bring me back to optimum health. It became clear to me that coffee break was in the way of getting back to precious good health. This was when my years long battle with coffee break began.
That’s part one of a four part series on Coffee Break. Next week, we get to hear my mom, my sisters and my daughters perspective on the whole thing. Have a great Saturday! Thank you so much for reading. Hal
Follow me on Instagram. (158k followers)
Hang out with me on TikTok. (2M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Prologue
Before I begin this episode, I’d like to express my deep and sincere thanks to anyone and everyone who has donated to the “Hal Walker Needs Our Help” GoFundMe page. The success of this campaign has helped me pay for caregivers, doctors visits, medications and living expenses. Thanks to these funds, I’ve been free of the financial devastation that comes so readily with severe chronic illness. Thank you. I am so grateful. You’ve given me so much.
Today’s post is about money. In large part due to the GoFundMe, I have some. Because I have this money, I get to decide what to do with it — where to put it, how to spend it and how to earn from it. I have to tell you that I’ve really enjoyed the luxury of making these decisions. I realize that not everyone has this luxury. I realize that many people, especially people living with ME/CFS, are in dire financial straits and have nowhere to turn for help.
James Strazza is a wonderful musician living with very severe ME/CFS. James lives with his mom, is unable to play music and could use your help in reaching his GoFundMe goal of $25,000. You can read James’ story and donate here. Click the Spotify below to hear some of James’ music.
Hal Walker, Financial Advisor
Except for one particular phrase, we didn’t use bad words in my childhood home. We didn’t use God’s name in vain and we didn’t use bad words — except for one phrase, that is. It was a phrase I heard many times coming out of my dad’s mouth. I can still hear it now in his voice. “Money is st.” My sisters will tell you. We grew up with that phrase. I’m not exactly sure what it means, but my memory connects it somehow with Dad's admiration for Francois Mitterrand, the socialist leader of France from 1981 - 1995. There must've been more to it than just the three words, but I missed my opportunity to ask. It's one more conversation that will have to be had in another realm someday. I miss you, Dad.
I got my first paying job in junior high school. I delivered the Record-Courier to 50 customers around the Beech Drive/Norwood Street Circle. I remember how diligent I was about putting every cent that I earned in my savings account. It was so exciting to watch that savings grow. I saved enough that in high school, I bought a Commodore 64 computer with my own money. I lugged that computer to college with me in 1984, but I never plugged it in. It was the 80’s. I wrote all my papers on an electric typewriter.
For the next 40 years. I spent everything that I earned. If there was a “spending generation,” I was definitely a part of it. Now I'm left with an attic full of stuff that I don't need. I mean what's a guy who's "bed-based and homebound" gonna do with four guitars, three guitar amps and two folk harps… and a Harpeji. It's interesting how chronic illness has changed my priorities. I no longer want stuff. I want financial security. To be honest, what I really want is 15% lesser symptoms. But in terms of finances, I’ll take a more mature, responsible approach to spending. It’s time to take seriously how I use the money that I've got. I think I’m done filling the attic.
On the subject of financial planning, I have a great story of serendipity to tell you! Truly, the timing of this particular phone call couldn't have been more perfect. But before I launch into the story, I'd like to give you some unsolicited financial advice…
If you’re in the U.S., I encourage you to go right now to TreasuryDirect.com and buy yourself an “I Bond.” The minimum purchase is $25. Buy one for your kids and if you've got 'em, buy one for your grandkids, too. For the next six months, you'll earn a whopping 9.65% APY interest. Six months from now, the interest rate will change according to the inflation rate, but inflation will likely stay high. Trust me on this one. There's no simpler way to get into investing. Take that little bit of cash you've got stored away and buy as much as you can. You can thank me later. :)
It was Monday, Aug 9. I was researching a fixed interest annuity online and I stumbled upon I Bonds. Within minutes of my discovery, I had registered for an account and purchased my first I Bond. Today I'm earning 9.65% APY interest on that money. Let me put it this way. While I'm sitting here writing my next Substack, my money is earning money. For a guy who, in the last year, has lost significant earning ability due to illness, this is a very good thing.
On Tuesday, I spent the morning learning more about I Bonds. I sent texts to my family encouraging them to buy now. When my sister Caroline discovered that my tip was a good one, she lovingly referred to me in a text as "Hal Walker, Financial Advisor." I accepted the role readily and I let KK know that she had just given me the title for my next Substack.
Tuesday afternoon, I headed down the rabbit hole of I Bond YouTube videos. With the help of Jennifer from the Diamond Nest Egg Channel, I came up with an elaborate strategy for how to get the most from I Bonds within the legal limitations. As the strategizing took over my brain, it occurred to me that maybe what I really needed was to talk with someone who knows more about this subject than I -- an actual financial advisor. Maybe…
On Wednesday, I started the day with a call to a friend. We talked about financial planning. She let me know that she and her husband were quite happy with their financial advisor and she offered to share his contact with me. I declined. I knew I wanted to talk to someone, but I wasn't really ready to pay somebody. That little voice of resistance in my head said, "With a little more research, maybe I can just do this on my own."
As you may know, I’m in a 12-step program. My next call was with my sponsor. She, too, shared with me her positive experience of working with a financial advisor. She encouraged me to go in search of one of my own to have a conversation. Again, I was interested, but that edge of resistance persisted. "I'm good at this kind of thing. How's a financial advisor really gonna help me anyway? Heck. I’m already my sister Caroline’s financial advisor!" But a part of me knew my sponsor was right. I needed to talk with someone with more experience just to see where the conversation might lead. The truth is that when I’m willing to ask for help, I never know what kind of magic might happen. On Wednesday morning, I became willing. I was ready to start asking around for recommendations.
At four o'clock that same day, I got a call from an unknown number in Akron, Ohio. I answered the phone and the person on the other end of the line introduced himself as Caleb Taylor, a financial advisor with Stratos Wealth Partners in Akron. He was contacting me to see if I needed a second opinion on any financial matters. "What?! How could this be? How did you know?!" I exclaimed. Apparently, about three years ago, on a Dave Ramsey website, I filled out a request to be contacted by a financial advisor. Of all the days to finally get around to calling me, Caleb Taylor chose THIS day -- not the day before, not the day after, but THIS day -- the day that I became actively ready to seek a financial adviser, the day that my sponsor suggested that I go find one, the day that I was willing to admit that I needed one. Caleb and I set an appointment for a Zoom meeting on Thursday.
The very next day, I met with Caleb and his boss, Sam Lupica to discuss my financial situation. It was a very pleasant conversation. We talked about TikTok and my illness and we made an inventory of my finances. I liked both these guys a lot -- especially when they agreed with me. They agreed that my I Bond strategy sounded like a good one. They agreed that putting some money in a fixed interest annuity was a good idea. They're gonna send me some ideas of what to do with the rest of the money and they let me know they're always available for questions. I decided not to mention my socialist father’s phrase, “money is st.” I didn’t feel like I had the facts to back it up. But when I emphasized the serendipity of their phone call the day before, we all agreed -- God moves in mysterious ways. Doesn’t she though.
Who knows. Maybe I've found myself a financial advisor in Stratos Wealth Management or maybe it was just confirmed that I make some pretty good financial decisions on my own. I'll let you know how it unfolds. In the meantime, go buy yourself an I Bond. Trust me on this one. If worse comes to worse, you can use it as toilet paper. (lol)
Thank you so much for being here. I hope you’ll leave a comment below so that I know you’re out there. Just click the button below. If you haven’t done it already, you’ll have to create a profile on Substack first. It takes just two minutes.
Have a great Saturday! I love you. No, for real. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
I knew exactly where the Playboys were. I knew right where he kept ‘em. They were in the left hand closet of the master bedroom on the upper floor of the Peterson’s split level house. There was a tall stack of ‘em just sittin' there waitin' for me. My plan was to sneak in the house, run up the stairs, grab the magazines and be back out to the garage before anyone noticed. The plan seemed fail proof. Unfortunately though, it failed.
I was the Peterson's favorite babysitter. I lived just seconds from their back door and I only charged about two bucks an hour for my services. For a ten dollar bill, Mr. and Mrs. Peterson could go out for a night on the town. Thirteen years old and full of ingenuity, I was a great babysitter for their three kids. It's been over 40 years now and the memories are distant, but my time spent there on Norwood Street with Micheal, Lee and Elizabeth is carved into the folklore of my adolescent life.
It was the late 70's and I couldn't have asked for a better gig. The Peterson's had a big TV, great snacks in the kitchen, a modern split level house and a big stack of Playboys in the dad's closet. Don't ask me how I discovered those magazines cause I don't remember. But it probably had something to do with me snoopin' around lookin' for trouble after the kids went to bed.
To get to their house, I'd run out the front door of my house, cross over Beech Drive, sprint through the side yard of Marylou White's house and then jump over the split rail fence into the Peterson's backyard. From my door, I could be at their door in less than 45 seconds.
In that dense wooded yard stood the tallest, coolest tree house in all of Kent. Hovering way up high on stilts, it was surrounded by huge beech trees. It was the kind of well built structure that every kid in Ohio dreams of having in their backyard. While the parents were away, the kids and I would climb up the ladder and we'd spend long summer evenings procrastinating bedtime. From the carved out windows of the tree house, you had a good view of the split level. You could see through a big picture window into a modern 1979 living room with a fireplace. Coming from my life in a two story ranch, I remember how cool that split level was -- with the two short sets of stairs leading either down to the living room or up to the bedrooms and the bathroom.
When the Peterson's went on a two week vacation, they left me in charge of mowing the lawn. The agreement was that the retired next door neighbor would open the garage door so that I could get access to the lawn mower. With this information in mind, my son-of-a-minister adolescent brain came up with an elaborate plan. As I write this today, piecing together the memories from forty years ago, I'm fairly certain that I pre-meditated the whole thing.
On the first mowing, once I had access to the garage, I would check to see if the door into the house was unlocked. I knew it would be, cause it always was. I'd sneak into the house, grab a few Playboys and be out before the neighbor got back to check on me. On the second mowing, I'd simply do it all in reverse. I'd put those magazines right back into the stack and no one would ever notice that they'd been gone. What could possibly go wrong?
The mowing day arrived and I left my house with the anticipation of a 13 year old boy about to have possession of some Playboy magazines. The neighbor was glad to open the garage door for me. When he left me alone with the lawnmower, it was time for my scheme to unfold. As expected, the door into the house was unlocked. With my heart in my throat, I turned the knob and I entered the Peterson's familiar basement. Alone in the split level, I ran up the first set of stairs, past the kitchen and up the second set of stairs. Then I turned right into the master bedroom and I opened the door to Mr. Peterson's closet. And there they were in all their glory -- a whole stack o' Playboys. I swear there must've been at least 100 of 'em just sittin' there waitin' for me. I stuffed a few of those magazines into my pants and I started heading toward the exit.
When I came out the door into the garage, I was greeted by a very unwelcome surprise. In all his terrifying glory, the neighbor was standing there wondering what I'd been doing in the Peterson's house. I don't remember what kind of excuse I made, but I do remember that man stickin' around until I finished mowing the lawn. With those Playboys stuffed down my pants and that neighbor watching my every move, I was a very uncomfortable young man, to say the least.
Eventually, I got the lawn mowed and I made it home. I put the Playboys safely under my mattress. It's been a long time since I've kept any contraband under my mattress, but that's definitely where the magazines went -- my special secret place where my parents would never look. By the way, if you happen to be a parent of a teenage boy and you're wanting to find out if they have any X-rated magazines in their possession, don’t check under the mattress. I guarantee that's where they'll be.
As planned, a week later, I returned for the second mowing. With the Playboys hidden down my pants, I got the neighbor to let me back into the garage. But this time, when he left me alone and I went to turn the knob, the door into the house was locked! At that moment, my world came crashing down. It suddenly became very clear that the neighbor's suspicion had destroyed my plan. He was making sure that I wasn't gonna get into that house to do whatever mischief I'd gotten into the week before. What would I do now?! Here I had these stolen Playboys in my pants and no way to return them to the rightful adult owner. This was a disaster.
If you look forward to this publication every week, please consider upgrading to a paid subscription.
Once again, my son-of-a-minister adolescent brain went into action. I came up with a new plan to resolve the dreadful situation. I would wrap those magazines in some newspaper and stash them up on a high shelf in the garage. Then I'd go home to write an honest note explaining the whole thing with an apology to Mr. and Mrs Peterson. I’d put that note in an envelope and then return to the place of the crime to deliver it into the mailbox -- hoping and praying never to see the Petersons again. So that's exactly what I did.
Months went by and I never heard from Mr. and Mrs. Peterson. I can't know what they were thinking, but I imagine they were pretty embarrassed when they learned that Rev. Harold Walker's son knew about the tall stack of Playboys in their closet. Looking back now, it seems like a normal enough human kind of situation, but at the time, it was a shameful secret that I couldn't share with anybody.
I did babysit for the Peterson's one more time. When they got home late from the night out, they were well lubricated and acted particularly friendly toward me. We didn't talk about the Playboy magazines, but the sense they gave me was that we were gonna put that little secret behind us. The elephant in the room would never be mentioned. Our unspoken shame would live forever in the closet -- kind of like those Playboys.
That’s Episode 31 for you. Thank you so much for reading. I really appreciate you. Have a great Saturday. ❤️ Hal
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” Thank you for being here. I recommend clicking the Listen Now button above. (12 min listen) Have you considered supporting my work by upgrading to a paid subscription?
Hal and ME
I was recently invited to be an ambassador of the Open Medicine Foundation. It will soon be my honor to take on this role. My job as an ambassador will be to support OMF's research efforts and to help build awareness of Myalgic Ensephalomyelitis / Chronic Fatigue Syndrome. How I choose to do that is up to me, so I came up with a big idea.
I'm starting a show called "Hal and ME." It's "a two minute show that puts a positive spin on a devastating illness." Every episode will spotlight one special person living with ME/CFS. Together, in 120 seconds, we'll bring to light the good that lives beneath the devastation. Open Medicine Foundation likes the idea and is excited to support me in this endeavor. So far, I've enjoyed making a logo and creating a Google form for submissions. I haven't made an actual episode of the show yet, but that'll be coming soon. I look forward to sharing it with you.
For the pilot season of six episodes, I’m looking for six people who are living with ME/CFS that would like to be a guest on the show. The deadline for video submissions is Oct 1, 2022. Find more details by clicking below.
Amor Fati
Since 1991, I've been living with a mystery illness. It's barely diagnosable. All the tests come back normal. The name they've agreed upon is difficult to pronounce and many doctors have never even heard of it. There's no known cause and no known cure. The number one cause of death for people living with it is suicide. Of all the major illnesses, it's rated as the one with the lowest quality of life. It effects all the systems in the body. There's very little funding for it. It's debilitating, it's ruthless and it's invisible. It's not an illness that I’d wish upon anyone, but it just might be one of the best things that's ever happened to me. It’s myalgic ensephalomyelitis, also known as chronic fatigue syndrome.
Lately, I feel like I’ve been turning a corner. Little by slow, my attitude is shifting from grief and despair toward acceptance and gratitude. Don't get me wrong. The painful emotions still swell up in waves, but I think I’m turning a corner. Of course, the current severity of my symptoms is in large part a determiner of my mindset. As I write these paragraphs, I'm grateful to report that I’ve experienced a series of "better" days. The ringing in my ears has quieted a bit and the intensity of my illness has eased up. Please feel free to ask again about my attitude on one of the rough days — one of the days when I'm writhing in discomfort and despising the limitations of this illness.
I read a story recently that has helped with this shift in mentality. You may know that Thomas Edison was one of the greatest inventors that ever lived. One evening, as he was having dinner with his family, a messenger rushed in to let him know that the factory was burning down. Edison's life work was going up in flames. Legend has it that when he got to the fire, he didn't grieve and he didn't panic. Edison called for his wife to bring the children and all their friends. Never again would they see such a spectacular display of flames and he didn't want them to miss it. The inventor brought to mind a Kipling poem that reads, "If you can meet with triumph and disaster. And treat those two impostors just the same…" Edison trusted that now the rebuilding would begin. He had faith that the necessary transformation would occur. He believed that amidst disaster, goodness continues to unfold. To be clear, I would choose losing my life's work in a fire over the onset of severe ME/CFS, but the point of Edison's story is well taken.
Upon first consideration, 2021 was a year of disaster for me. The most challenging year of my life, it was a harrowing nightmare of illness. At times, I was living in the dark, barely able to speak and unable to do most of the things that bring me joy. Living 15 minutes at a time, I experienced unpredictable onsets of intensified symptoms. Hopelessness loomed heavy. My family and friends gathered around me and I watched my life's work as a musician go up in flames.
As the dust has settled in 2022, I'm drawn to the stoic truth of ancient Greece that is amor fati, "the love of fate." The phrase encourages me and challenges me. It asks, "Are you willing to love what is? Can you greet triumph and disaster the same? And will you consider that your greatest obstacle could bring the greatest opportunity?" Well, if I don’t get to choose just to have an easier life, in each of these three regards, I reluctantly wish my answer to be, "yes."
Epictetus of ancient times said it well,
“Don’t seek for everything to happen as you wish it would, but rather wish that everything happens as it actually will— then your life will flow well.”
Referring to being a person capable of uncompromising acceptance of reality, Nietzche writes,
“…all in all and on the whole: some day I wish to be only a Yes-sayer."
In the spirit of amor fati, I say, “Bring it on, ME/CFS.” (yikes)
I have to admit. Every time I visit the Facebook page for people living with severe ME/CFS, I get terrified. The depths of the suffering that I read is heartwrenching and I fear that that level of suffering could very well be in my future. Compared to many of those stories though, I've been fortunate.
For 30 years, I lived with a mild version of this illness. Today, I have a full-time caregiver. I live in a big house with a float tank in the bathroom. I spend my days writing and most importantly of all, my symptoms have eased up a little bit lately. Coming from this place of privilege and good fortune, I’m cautious not to make light of the cruel suffering that is ME/CFS in it's most severe form. I honor people like Peggy Munson who has been living with severe ME/CFS for 30 years and who hasn’t gotten the luxury that I've been afforded. Here's Peggy now:
“…but anyway, she used to call me Dark Star, that was her nickname for me, Dark Star. Because I would always take the dark side. So I do have to say that it’s hard for me to take the other perspective on this. But also, because my M.E. is so negative, especially around caregiving. It's been so persistently negative. So it's one area in which I definitely do not share any level of privilege in terms of having stable, appropriate or healthy caregiving or caregivers. That’s been my most persistent problem for over 20 years… and not having family support and stuff like that. So, for me, most of the negative side of this illness really comes out of that. Not being able to see that from a perspective of… “What would life be like if there were just loving, supportive people in my more immediate environment all the time.” That’s just never really been true. So yeah, that's a tough one. But the humor thing is definitely less hard, even though I can't really think of anything right now. I like that angle though. I'd say that I am really positive as a person, which is kind of ironic. I mean I'm very Sagittarius. My tendency is always to look for the solution to everything. As much as I’m like a dark star, I actually find positive things, usually in everyday life.” - Peggy Munson, (website)
Thank you for sharing, Peggy. I admire you so much and I’m so grateful for our connection.
In 2022, I have an urge to celebrate the darkness that is ME/CFS. At first I was gonna write “I have an urge to shine a light on the darkness that is ME/CFS.” But then I remember that many people living with this illness are light sensitive and have to live in the dark. So instead I say, “I have an urge to celebrate the darkness that is ME/CFS.” Amor fati inspires that urge. Will I fight against reality or will I love this one life that I’m given? Most likely, I'll do both and then everything in between. But with the inspiration of Thomas Edison by my side and the spirit of amor fati in my thoughts, I take my humble place as a witness of what is. I say yes to life as it unfolds in all its wild, brutal and unexpected ways. I wonder what connections will arise when together we seek the beauty that lies beneath the suffering.
Thank you for being here. Thank you so much for reading all the way to the end. Don’t forget to spread the word. I’m looking for six people with ME/CFS who would like to be guests on my new show, “Hal and ME.” Have a great Saturday. Love, Hal
Follow me on Instagram. (151k followers)
Hang out with me on TikTok. (1.9M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Welcome to “Living in a Body.” I’m so grateful for this outlet to express myself and I’m so glad for your caring attention. I recommend clicking the PLAY button above. (11 min listen) Please feel free to share.
Wheelchair Life
My real name is Harold Walker. But when I was teaching in elementary schools, I was known as Mr. Halwalker. Many of the younger students thought Halwalker was my last name. I found it so endearing that I never corrected them. In fact, I encouraged it. “Mr. Halwalker!” It made me smile every time. Besides that, I've always been quite satisfied with the Walker name. It's been a good last name to have. I come from a proud lineage of Walkers and a strong line of Harolds.
My grandfather, a law man from Birmingham, was Harold Walker Sr. Born in 1899, Grandad lived to be 98 years old. He prided himself in rarely getting sick. Harold just barely missed the opportunity to be alive in three different centuries. Into his 90's, he was still hanging from the rooftop of his home touching up the house paint. He refused to hire a contractor. My dad was Harold Walker Jr. Until he was almost 90, he was still riding his bicycle on highway 59 across Kent. We always expected him to live to be a hundred, but cancer took him down at 92. I'm Harold Walker lll. I'm living with moderately severe chronic illness. At the age of 56, mostly bedridden, I use an electric wheelchair to get around the house.
The surname Walker is derived from the Old English word wealcere, which means fuller. In Scotland, to walk, still means to "full" cloth. Wool has a natural oil called lanolin which needs to be removed before it can become cloth. In the old days, the wool was soaked in clean water and earth. Then, it was pounded by foot. Typically, this pounding was accomplished by putting the wool in a vat of stale urine and stomping on it much like grapes are stomped to make wine. This procedure was called "walking", and thus the surname "Walker" was born. It turns out that my proud lineage has humble roots -- roots that were willing to walk in stale urine for the sake of making wool for others.
When I rolled into his music studio on my wheelchair, the first thing that Chris Martin of Coldplay said to me was, "We'll have to start calling you Hal Roller." I didn't get the joke at first, but now I get it. To be honest, I don't find it to be that funny. I'm Hal Walker. I love my name and I love walking. As a matter of fact, going on a good walk is one of my all time favorite activities. But I haven't been doing much of it lately. With this illness, a blue electric "Falcon" wheelchair is my preferred method of getting from one place to another.
On Monday though, I did an errand with my mom and we left the wheelchair at home. As I stepped down the front stairs and then walked the fifty feet to the car, it was very apparent to me that my body hadn't walked that far in weeks. I could feel it in my spindly legs. I could feel it in my rickety stance. The muscles just aren't there anymore.
When we got to the destination, this time I needed to walk about a hundred feet each way. In the past, this is the kind of distance where I would naturally pick it up to a jog. But with the wobbles in my walk, turning up the speed seemed strangely risky. My mind remembers the ease of running, but my legs seem to have forgotten. When I made it back to the car safely, I was quite happy to sit down. As my mom drove us home, I stared out the window and I pondered the frightening reality of losing muscle over time. I started to entertain the question, "What am I gonna do to turn this muscle wasting around?" ME/CFS is a merciless thief and my beautiful muscles are the stolen treasure.
The first time that I went public in a wheelchair was last February. My caregiver at the time, Arnel and I went to Summit Mall for a MacBook repair at the Apple Store. My wheels felt good on those hard mall floors. It was a smooth ride. For some reason, almost everyone that I passed waved and said "hi" to me. I don't know about you, but I don't recall anyone ever waving and saying "hi" to me in the past when I was just walking through a mall. I wondered if maybe people had gotten more friendly over the pandemic . But I was pretty sure it was because I was in a wheelchair. It was striking how many smiles I got.
When we got to the Apple store, I was immediately swept up into the care of one of the Apple geniuses. They took me to a special wheelchair accessible table in the back where I could kick my feet up and spread my gear out. They left me alone there and I had the whole table to myself. To be honest, I'd rather have been at the regular people's table where everyone else was. But I got the MacBook fixed and zipped around the store a few times before heading home.
I'm glad to say that I've had a series of better days lately. Last Saturday, I woke up feeling well enough that going to the Haymaker Farmer's Market seemed like a real possibility. But then the terrifying thought of facing all those locals in a wheelchair took over my brain. I'm kind of a public figure in my town and I'm socially awkward enough without being in a wheelchair. Add a wheelchair to the mix and I'm seriously questioning whether or not it might just be better for me to stay home.
Realizing that this could be good fodder for my next Substack, I let Mango know that I was hoping to go to the Farmer's Market after breakfast. Mango, who's my caregiver, smiled in agreement and I was committed. I was committed to facing my fear of people. "What if they don't believe me? What if they perceive me as a tragic figure living out the sad life of chronic illness in a wheelchair? What if we can't figure out what to say to each other? What if they look away and pretend that they don't see me?" These are the kinds of the scary thoughts that go through my mind.
That morning, a friend reminded me that courage is not the absence of fear, but rather feeling the fear and taking the action anyway. With the added bonus of being able to tell the whole story on Substack, I was ready to take action. Besides, Mango would be by my side the whole time.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
There were no handicap spots near the farmer's market, so we parked with everyone else in the gravel lot across the street. Normally, Summit Road is a very difficult road to cross, but not so if you're in a wheelchair. All the cars stopped right in their tracks for me. When a car in the back of the line honked impatiently, one driver shouted out the window for the whole world to know, "There's a wheelchair crossing!"
Our first stop was at Pete's medicinal tea booth. Pete called no attention to my chair. He graciously invited me for dinner next week and gave me a sample of tea in a paper cup. Then I saw Trish walking past and I called her over. She generously offered a poem that she'd written that morning. She leaned down real close and read it out loud.
Our second stop was at the Traveling Stanzas Poetry Makerspace. David let me know that there was a ramp in the back of the bus so I could go inside. The truth is that I could have easily just walked up the stairs, but I took the ramp cause I didn't want anyone to think that I'm faking it. In the bus, I wrote a quick poem called "Kent has Tomatoes."
Mango and I made our way through the market and bought peaches, green beans, yellow squash and lettuce. The large rear wheels on my chair made rolling in the gravel a breeze. Under the bridge, we ran into my neighbors, Ralph and Beth. I stood up from the chair to give them both a big hug. After I sat back down, we had one of those awkward moments where no one knows what to say next, so I made my familiar socially awkward exit — only this time it was in an electric wheelchair. I loved the hug with Ralph, though. That hug was one of the highlights of the whole trip.
Kenny was working at a produce stand and I rolled over to say "hi." Somehow, I felt the need to say, "Look at me... in a wheelchair. Can you believe it?" He gave a good response. He said,"Look at you out of the house, Hal!" He was right. Thank God that I made it out of the house last Saturday. My soul got nourished.
As Mango and I were leaving the market, I realized something. It's just a chair on wheels. It's a chair that has wheels on the bottom of it. I mean, heck, everyone should have one of these things. It's comfortable, it's relaxing and it's a joy to ride. And you never have to worry about finding somewhere to sit down.
Well, That’s Episode 29 for you. Thanks so much for reading. I really appreciate you. Have a great Saturday. Maybe I'll see you over at the farmer's market later. ❤️ Hal
Follow me on Instagram. (151k followers)
Hang out with me on TikTok. (1.8M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi! I’m Hal. I wish a warm welcome to all the new subscribers. I’m honored that you’re here. Feel free to spread the word. Enjoy.
The Blank Page
As I'm sure you know by now, I'm housebound and mostly bedridden. Within the last year, Myalgic Ensephalomyelitis has turned my life upside-down. But just so you know, the illness hasn't taken my spirit. One day at a time, I keep showing up to the blank page and I never get bored.
I live most of the day in my adjustable bed. For a variety of reasons, I don't own a TV, I don't listen to music and I don't read books. I feel unwell most of the time, but I don't watch Netflix, I don't scroll on TikTok and I don't listen to podcasts. I rarely leave the house and I rarely get bored. Sometimes I'm sad, sometimes I'm lonely and sometimes I'm scared, but I never get bored.
Here’s what I do everyday. I rest. I talk on the phone. I attend 12 step meetings. I attend the London Writers Hour. I play Wordle. I float. I visit my garden. And I create. As a matter of fact, creativity is saving my life these days. Even when my ears are ringing and my body is writhing, the creative spirit keeps flowing. The blank page of the day keeps getting filled up.
The pandemic was good training for the stay-in-bed life of chronic illness. In March of 2020, I was suddenly given the freedom to stay home in my pajamas and to create. For a creative introvert like myself, this was a dream come true. I had no idea that I'd been waiting my whole life for a pandemic to come along. While COVID ravaged communities around the world, I was one of the lucky ones. The luxury of staying home allowed me to free parts of myself that had never seen the light of day. I dove whole heartedly into learning new systems for making things.
The lockdown happened on March 19, 2020. Needing to provide music for my church's Zoom service on the following Sunday, my first project was to turn my living room into a video production studio. As a one man operation, I jumped into a self-guided speed course in lighting, video, audio and green screens. Needing to keep the church choir alive, my second project was to figure out how to create a virtual choir. After a few attempts, the nearly 500-step process started to flow naturally.
I joined TikTok right before the TikTok revolution of 2020. By March, my profile (@banakula) was gaining real momentum. I began a practice of creating and posting at least one music video everyday. Having procrastinated for years putting my music out into the world, Tiktok made it possible to record and distribute original music with the tap of a few buttons on my phone. Within minutes, thousands of new listeners were hearing my compositions for the first time. Day after day, I loved the challenge and the discipline of coming up with a new idea for another TikTok.
I discovered the "duet" feature on the app and started collaborating with musicians all over the world. With this new exposure to great musicians, I was inspired to create a musical conversation show on YouTube called, This Moment in Music. Full of early pandemic gusto, I streamed the live show three times a week from my living room. Once that show got off the ground, I created another called "Sunday Sings." Every Sunday night, I was leading an online sing along complete with lyrics displayed on the screen. Creating the system for presenting live music and lyric pages with smooth transitions was an intense process of making constant adjustments. After lots of trial and error, by March of 2021, Sunday Sings was really starting to flow.
By this time, I had produced 84 episodes of This Moment in Music. As the show matured, I settled into a more sustainable once a week schedule that I felt I could grow old with. I was confident that the supply of guest musicians from TikTok would never run dry. But it was during that month of April that I noticed the first signs of worsening symptoms. I got a sore throat that hung around way too long. For the next 10 months, I experienced a steady decline in my health. Week after week, I was rendered more helpless and more in need of care. The creative projects of 2020 were put on hold. As I lay there afraid and in the dark, the blank page was taunting me from my abandoned music office.
My life was turning upside down. When I had the energy, I documented some of my experience with extended written posts on Facebook. I'd be floating in my float tank and out of the silence and the dark, an idea would emerge. In the midst of great physical and emotional turmoil, I couldn't hold in the urge to create. Two hundred words turned into a thousand words. I soon realized that Facebook was no longer the right platform for my writing.
28 weeks ago, I started posting these stories from my life on Substack. On January 15, 2022, I launched "Living in a Body." The first 27 episodes seemed to come without too much difficulty. The easy stories have mostly been written. In many cases, the episodes wrote themselves. Lying in my bed or floating in the tank, a few sentences would appear and then the rest just poured out.
At week 28, I find myself facing the blank page again and I'm not sure where to go next. What if I run out of ideas? What if the stories have all been told? I guess this is where the rubber hits the road. Publications that are successful keep going. They don't give up after 28 episodes. I guess it's time for me to dig deeper, to take more risks and to get more honest. It’s probably time to let go of trying to please the audience and just to keep writing the truth.
There's one episode that I've been trying to write called "Dark Night of the Soul." It's a painful one and it'll probably take a lot more than 1500 words. As a matter of fact, it might be a three-part series. It's so difficult to write but I know that it needs to be written. It occurs to me that once it's written I may never put it out in the world. But who knows what insight will emerge from the mysterious process of facing the blank page and writing it down. I'm willing to keep showing up as long as my body allows.
Thank you so much for coming along for the ride with me. It’s such a blessing in my life to have this outlet. I wonder. What's the blank page that you're facing? What needs to come out. I'd love to hear about it.
I'm gonna close today with a song, “The World is Waiting.” My lungs are very weak, so it's gonna be quiet. This is the song that I used to close all 84 episodes of This Moment in Music. It's one of my favorites. Enjoy.
You've got a light, a light inside you
Go on your way in peace
So shine that light, the light inside you
Go on your way in peace
The world is waiting in the hope of another day
She will carry you safely through the stumbles and the falls on your way
Just remember that I'm loving you and you're loving me
So as you go won't you go on your way now in peace
Follow me on Instagram. (144k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. Today’s episode is a bona fide rant and it’s best experienced through audio. Please click the “Listen Now” button above. Also, I’d love it if you’d share this episode with one person. I’m so grateful that you’re here. Enjoy.
The “How Are You” Dilemma
If you’ve been following my posts here at “Living in a Body,” you’ll know that I never rant — 26 episodes and not a single rant. I don’t know about you, but in my thinking, this makes it my prerogative to do one full-fledged, all-out, gut-spilling rant. So… Here’s my warning. This is gonna be a rant. This is gonna be me letting loose on you with a whole bunch ‘o words. It’ll be me getting up and out all that pent up frustration from 26 rant-free episodes. It’ll be a no-holds-barred, straight-out, unadulterated, no ands, ifs or buts about it, bona fide rant. And just in case you don’t know what a rant is:
rant
/rant/ verb — to speak or shout at length in a wild, impassioned way.
"she was still ranting on about the unfairness of it all"
Ready? Here we go.
You know what, gosh dang it? I am done with the whole “How are you” business. I’m so done with it and I think you should be done with it too. As a greeting, “how are you” misses the mark. It’s a direct insult to my complexity as a human being. On so many levels, the question is just lacking. And just in case you can’t figure it out for yourself, let me spell it out for you. Lemme dissect this so you understand just exactly what I’m talking about here.
Here’s my problem. I pick up my phone several times a day and I am immediately confronted with an abrupt “Hal, How are you?” It comes at me so chipper, so fast — no smooth transition — just BAM! “Hal, How are you?” No matter how many times it happens, it touches my sensitive nervous system in the same grating way. Depending on how well I know the person, I respond either silently or aloud with, “wrong question!” After the initial impact, it always takes me a few seconds to get grounded — to get back to the state I was before that “how are you” happened.
First of all. what exactly do you mean? “How are you?” Are you looking for a rating on a scale from one to ten? In that case, “I’m a four. Thank you. Next question.” Are you asking me to make a judgement of my current life circumstances — good, bad or somewhere in between? In that case, “I’m somewhere in between. Next question.” And to what time scale are you referring? This moment? Well in that case, “Five minutes ago, I was a four and now that you asked me that question, I’m a two!” Are you getting my drift here? There’s got to be a better question.
Even worse than “How are you” is when you go into a Zoom meeting and the first person to speak says, “How is everybody?” How is everybody!? You gotta be kidding me. We’re in a room of 20 people. Do we all say “fine” now at the same time? Or are we gonna go around the circle and rate our lives on a scale of one to ten again. In that case, “I’m a one, because I can’t stand that you just asked us to answer that question all at the same time. C’mon now.” Have a little respect for the complicated ones among us.
You wanna know how I am? “I’m fine. How are you?”
The story that I have to tell of my wellness is a complex one. In any one day, on the spectrum of “how I am,” I go all across the board. For the most part, I’m of sound mind and strong spirit. Fundamentally, all is well. Today, I have the will to live and the capacity to love. I’m sober and I’m abstinent from my drugs of choice. At times to my own detriment, my brain is a monstrosity of creative energy. My bowel system is running smooth and healthy. At 158 lbs, I’m at a good steady weight. Earlier today, I got a compliment on my haircut and that felt good. Each day, I enjoy a few fun, quiet laughs with myself in my float tank. I’m grieving the loss of my life as a musician. I’m grieving the loss of my love relationship of the last seven years. With the intensification of my ME/CFS symptoms, my psoriasis is practically all cleared up. On a regular basis, my physical/emotional experience feels like more than I can bear. One day at a time, I keep bearing it. I have a beautiful circle of people who love and care about me. I have 145k followers on Instagram which means less and less to me these days. I have 41 paid subscribers on substack to whom I’m very grateful. And thanks to your contributions to the GoFundMe, I have money in the bank. Oh, and by the way, I’m living with moderately severe ME/CFS, an illness that receives almost no funding and is rated the lowest quality of life of all the major illnesses.
See what I’m saying? “How are you?” just isn’t the right question. A complicated guy like me can get overwhelmed with all the options of how to respond. In my humble opinion, it’s a flawed social construct.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Just so you know, this isn’t the first time that I’ve rebelled against a mainstream social practice. I remember in the early 2000’s, I was on a mission to end applause at my concerts. I was full of insecurity and I was self-conscious of the obligatory nature of applause. In all my audaciousness, I invited the audience to break free from the restraints of the social norm and to express themselves in their own unique way after each musical number. Whether it was to rub their hands, to raise their arms, to shout out loud or to remain silent, the audience was no longer required to behave like a clapping herd of seals. It didn’t go over well. The results were awkward. All they wanted to do was to express their appreciation. My invitation for creative freedom was unwanted and unnecessary. Since then, I’ve learned to appreciate the sound and the release of an audience’s applause.
So… what’s the solution? How are we gonna fix this “how are you” dilemma? Could it be that I’m the problem? Could it be that “how are you” is just a way of opening the door into deeper sharing? Probably so. But I’m not done here yet. There’s got to be a better opening.
I have a friend that asks, “what’s alive in you?” I like that, but I don’t see it catching on. One of my favorites is just to have silence until someone is moved to speak. But I’m afraid it’s a bit too much like taking the applause away from an audience — too much uncertainty for the general population. How about “who are you?” I know it’s totally esoteric and a bit confusing, but I think it would be good for our culture — constantly asking each other “who are you?.” I often ask people, “so, what’s going on in your world?” I’m quite happy with the open ended-ness of that question but again, I don’t see it catching on.
Maybe shining a light on the problem is my main job here — just opening the conversation. Maybe it’s not a problem. Maybe it just feels good to rant about something. I’m interested in your thoughts on the topic. Let’s get a heated debate going in the comments. I know it’s a charged topic, so go easy on each other.
I really appreciate you giving me your attention today. I appreciate that you read all the way to the end to this rant. I enjoyed ranting for a few minutes. I promise I won’t make it a habit. By the way… How are you? No, really. How are you for real? I love you. Hal
Follow me on Instagram. (144k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I’m living with moderately severe ME/CFS. Fifteen minutes at a time, I wrote this post over the course of a week. I’m so grateful for this outlet to express myself and I’m so grateful for your caring attention. Please feel free to share.
Searching for a Peace Sign
I haven’t been doing much traveling lately. But last night, I dreamed that I was on a bicycle trip with my sister and my daughter. We were in a bakery and I was tasting all the muffins before deciding which one to buy. Surprisingly, I went with the lemon poppyseed muffin. Just to be clear, I am NOT a fan of lemon poppyseed muffins. Before I could dive into the muffin though and before I could get back on the bike, I woke up into a body that is “housebound and mostly bedridden.” My current life circumstances do not include travel.
I’m grateful that I’m still able to travel by foot from my bed to the bathroom. I’m glad that every evening, I travel by stairlift to the first floor of the house. It’s there that Mango gives me my nightly massage. After the massage, I’m grateful to travel by wheelchair to the back porch and then to the front porch. I roll out onto each porch, look up at the sky and with a certain amount of bewilderment, I ask the great mystery, I say, “God, if you think I can survive this, please show me how.” On these daily travels, I rarely see other travelers. Mango is certainly a friendly face to run into, but calling us “travelers” here in my own house is a bit of a stretch.
In my previous life, I traveled all the time. I traveled in the car to Cleveland three or four times a week. I loved traveling on my Yamaha Vino 125 all over Kent and Stow. Every once in a while, I’d travel on a plane to see my dear sisters out West. I remember with great fondness traveling on several road trips with Kim — Ithaca, Ann Arbor, Chicago, Southern Ohio. And Hallie and I once travelled to New York City together to see some Broadway shows. By the way, I would give anything to jump in my car right now and drive all night long to Brooklyn just to spend a day wandering around that city with my daughter. On my many travels, there were days when I would pass hundreds or even thousands of fellow travelers — mostly hidden behind car glass and social norms, but I knew they were there — traveling right along beside me on the highway.
When Hallie and her friends were young, as passengers in the back seat of my Toyota, they made a game out of getting a peace sign from the cars that we would pass. The children would put their little “peace signs” up to the window and wait for a reaction from the fellow travelers. I remember well the moments of anticipation and fear — the not knowing what kind of response the stranger might have. Whenever they would get a peace sign back, an explosion of cheers from the back seat would release all the tension. “Yay! We got a Peace sign!” For a moment, something shifted in the world. For a moment, we witnessed peace between strangers. For a moment, we broke through the walls of isolation and social norms and made a connection.
As Hallie’s gang moved out of their undeniably cute phase, teenage self-consciousness made the game even scarier. “Searching for a Peace Sign” eventually faded into childhood history. On our drives, I continued to encourage teenaged Hallie to go in search of a peace sign, but she would say, “No Daddy… it’s too scary.” I can relate. As an adult, waiting at a stop light, I would avoid all eye contact with the people in the cars next to me. In fact, if I was ever caught unconsciously staring at someone, I would quickly look away. At my age, in this day and age, the thought of putting up a peace sign in hopes of a response is just too radical. There must be a more comfortable way to create peace in the world.
I gotta tell you. I have some serious challenges, but I live in a bubble of privilege and luxury. I have a full-time caretaker in a big mansion over here on South Chestnut Street in Kent. Besides the constant ringing in my ears, the burning in my chest and the churning in my brain, it’s very peaceful and quiet in my home — no wife driving me crazy, no kids getting on my nerves — just a mildly annoying old cat who meows like a duck. I can look out over my own peaceful vegetable garden, I sometimes lie down in my own peaceful yoga room and I even have my own peaceful float tank that’s connected to my own peaceful bathroom. In my little bubble of a world, I am surrounded by comfort and peace.
But my dad would frequently remind me that Peace is more than my own comfort. Peace happens in relationship. Creating peace in the world means getting out of the float tank, building relationship and being of service. For a guy like me, living with severe illness, it’s not easy.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Take today, for instance. my friend Steve called to ask if I’d like a couple of old high school buddies to stop by for a visit on the front porch. With his call, Steve was putting up the proverbial peace sign. This was my big opportunity! Almost immediately though, my body tensed up with questions. How will I explain that truly I am mostly bedridden? How do I explain that my visit will probably have to last no more than 15 minutes? How do I explain that I follow a very specific food plan, I only drink water and there are no special treats that you can bring that would give me any extra enjoyment? Steve is getting back to me later so I’ll be able to ask for what I need, but in the moment, I was very hesitant to respond with my own peace sign.
The 12-step program in which I’m active offers me an excellent way to put up my little peace sign all around the world. There are 10 tools in the program. It’s suggested that we “work” every tool, every day. The tools are actions like writing, sponsor, meetings, quiet time, service etc. One of my favorite (and most challenging) tools is the tool of the telephone. It’s suggested that we make at least three connections a day by phone with other fellows.
On these calls, we’re encouraged not to talk about the weather or sports or politics or religion. Instead, we talk honestly about our lives. From a worldwide phone list of 1,000’s of members, I can pick up the phone at any time of the day, call someone whom I’ve never met and jump right in to sharing about my life — or asking them about their life. With all of my social anxiety and fear of conversation, pushing that green button is a form service. I’m putting up my peace sign in the window to say, “Hi. This is Hal from Ohio. I’m just calling to connect.” And then we go from there — 100% improv. Every call is unique, but we share a language of recovery — concepts like gratitude, next-right-action and stay in the day. Every personality is individual, but we follow the guideline, “principles not personalities.” One imperfect call at a time, over time, I’ve built some close relationships with my fellow travelers— some of whom I’ve never met in person. In my isolated circumstances, the tool of the telephone is saving my life.
So, I’m curious. In what ways do you raise up that proverbial peace sign in your life? In what small ways are you (or are you not) creating peace in your home or in your world? Would you do me a favor? Next time you’re a passenger on the highway, put up a peace sign for me to the passing cars. Do it until you get one back. You can tell ‘em that Hal sent you.
Well, that wraps up episode 26. I’m so grateful that you read all the way to the end. Thank you so much. As always… enjoy living in that body of yours today. It’s not gonna be around for ever. I’ll do the same. I appreciate you and I love you. Hal
Follow me on Instagram. (144k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I’m living with moderately severe ME/CFS. Fifteen minutes at a time, I wrote this post over the course of a week. I’m so grateful for this outlet to express myself and I’m so grateful for your caring attention. Please feel free to share.
Following in His Footsteps
My Dad was a giant — a very humble giant, but a giant nonetheless. His name was Rev. Harold Walker Jr. I’m Harold lll. They call me Hal.
After last week’s post about God, it occurred to me that maybe I missed my calling. Maybe I should’ve become a minister like my dad. If I hadn’t been so self-absorbed, pleasure-seeking and dishonest, it might’ve been a really good career for me. Maybe on the other side of this illness, when I’m all healed and transformed, I’ll start a church. I’m not sure what denomination it’ll be, but there are a few things I know for sure.
It’ll be a church that fills the fellowship hall with ping pong tables and Go boards. There will be a harmonica ensemble, a khaen choir and a songwriting team. Every week, we’ll have banakula making sessions after school and the campus will feature a frisbee golf course and an ultimate field. Like my Instagram demographics, most of the congregants will be young men between the age of 14 and 24. They’ll call me Preacher Hal.
On the weekends, the adults’ll show up. There’ll be Friday night concerts and Sunday night sing alongs. Early Saturday morning, there’ll be silent meditation and then on Saturday nights, there’ll be contra dances with live contra dance bands.
Sunday mornings will be mostly silence, singing and story telling. I’ll give a short message for all ages and then we’ll do whatever it takes to connect with each other and to connect with that which is most sacred. There will be chairs available, but there’ll be lots of space on the floor for lying down, stretching and rolling around. Every Sunday after church, we’ll share a healthy meal.
For today though, it’s probably best if I stay in reality. Prone to grand visions, fear of the future and regret of the past, I’ve got to take seriously the practice of staying in the day - in fact, staying in the next 15 minutes. My main job today is to breathe, to stay calm and to get comfortable with discomfort. Truly, there is no escape from this moment… may as well smile in it.
Having said all this, I think I’ve changed my mind. When I get healthy again, I will not be starting a church… or a community center for that matter. I’ll be too busy walking in the woods, floating down the river and savoring every moment. I’ll be more than happy to provide an occasional reflection at any church that’ll have me, but I think I’ll leave the weekly preaching to my father.
In many ways, I did follow in the footsteps of my dad. I inherited his great joy of gathering with folks around the piano to sing. I inherited his voice and his gentle nature. As the music director of the UU Church of Kent for almost 25 years, I inherited an aspect of his ministry. Mine was in the form of music. For many years after he retired, my Presbyterian dad (and mom) regularly attended the UU church to support me and my music ministry. Oh, how I took for granted their presence in the pews. (Thank you, Mom)
Rev. Harold Walker Jr. was patient, honest and kind and he had a strong interest in others. He was also off-the-charts smart. I’m often amazed at how much he lacked self-centeredness. Harold was a man of faith and a man of service. Every Saturday morning, he took my mom’s to-do list and he got down on his hands and knees to get that list done. I don’t think I ever once heard my dad complain.
Every Sunday after church and all through the week, he would visit the sick and the poor. I vividly remember one Sunday on our way home from church when my dad needed to make a visit to someone who was housebound with illness. We stayed out in the car while he went in for the visit. When he returned, Dad told us about the person inside. I think he used he words like “chronic” and “pain.” I distinctly remember thinking… “Ooo. that sounds rough. I’m glad that’s not me.” Well, today I’m grateful to sat that I’m not in pain, but I am living with severe illness and severe discomfort. Because this is “Living in a Body,” I’d like to take a few paragraphs to let you in on what it’s like living in this particular body. Just to warn you… It’s brutal — beautiful, but brutal.
I’ll start with the perpetual fuzzy buzzing in my ears. The intensity of the ringing correlates with the intensity of my overall symptoms. There are times at night when it’s maddeningly loud. Those are one of the times when I most question my ability to survive this illness — when the ringing gets so bad. Every once in a while though, I have a joyful moment in the float tank when I do a double take and I ask myself, “are my ears still ringing?” It’s rare though.
My eyes are usually burning and dry. I always keep a bottle of soothing eye wash nearby.
In my posts, I occasionally mention “writhing” in bed. It’s a flu-like burning in my gut and a burning weakness in my lungs. As the illness has progressed, talking and eating have become more labor-some. There’s a heat in my head and chest while my feet are ice cold. When I’m writhing, I move and shake and stretch and twist and rub my boney limbs together in hopes of getting some relief. I often wrap my arms over my chest as they tremble and I rub my elbows with a jittery weakness. My legs and arms have pretty much lost all muscle.
The neurological symptoms are difficult to describe. It’s like a numb aching in my brain that connects in a weird way to a numbness throughout my whole body. I’m very sensitive to sound. Sounds cause a strange physical discomfort in my brain as if the sound is touching my brain. Falling asleep is very difficult so I spend much of the day resting with my eyes closed. I often experience weird waking dreams —- non-sensical dreams connecting things that have no connection. I find my self thinking “Where the heck did that come from?!” I can’t remember a single one of them, but they happen a lot.
Just as I’m getting ready to go to sleep, the restless legs get going and I never know what body I’m gonna wake up into the next morning. At about 5 am, the wakening is usually quite rude. Mornings are particularly rough. Thank God I’m not in pain though and thank God that my bowel system seems to be working quite well.
It’s a brutal illness and it’s a marathon. Any kind of exertion seems to make the symptoms worse. From the paragraphs above, I hope you can see that “Chronic Fatigue Syndrome” is a terribly lacking descriptor. Living in this body in the last year, I’ve experienced more than my share of terror and trauma and I’m well aware that the fear doesn’t help anything. So for today, I’ll just float right on down the river and calmly savor every moment — with all it’s discomfort. I hope you’ll join me.
Here’s one last story about my dad to close the episode. Once, when the family was driving down to Birmingham, I had the opportunity to ask my dad this question. I said, “Dad… Of all the seven deadly sins, which is the one of which you are most guilty?” I don’t think Harold would mind me telling you that after a brief pause, his answer was “lust.” I’m sorry to say that’s all we got. My dad died in 2017 and we won’t ever get to know any more details about that one. Damn. What a fun conversation it would have been. I love you so much, Dad. But we always thought you were perfect.
Thank you for listening. Thank you for reading. Don’t forget to enjoy living in that body of yours today. By the way, I really hope you’ll leave a comment. Introduce yourself and tell me about yourself. I love it when people comment. See you next time. Hal
Follow me on Instagram. (145k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (61k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I’m living with moderately severe ME/CFS. Fifteen minutes at a time, I wrote this post over the course of a week. I’m so grateful for this outlet to express myself and I’m so grateful for your caring attention. Please feel free to share.
The God-Sized Hole
I’ve been thinking a lot about God lately.
I was all by myself in my float tank yesterday and we were having a conversation. I said, “God, you must have some sort of plan for me. What possibly could be your plan in all this craziness?” Within a few moments, I got a very clear answer. “THIS is the plan, Hal. This moment is the plan. What are you gonna do with it?” For a moment, I chuckled, relaxed and I smiled. Then I dove into a spiral of fear.
Occasionally, it’s grandiose thoughts about “God’s plan” for my future that inspire me to keep going. My sister tells me, “you’ll inspire 1000’s of ME/CFS patients not to give up. With your platform, you’ll be a voice for the #millionsmissing.” In these recent times of difficulty, I regularly resort to magical thinking, “I’ll fall in love and live happily ever after in marital bliss.”
But God says, “THIS is the plan” — this moment — with all its discomfort, all its aloneness and all its illness. THIS is the only plan. There are no further plans — just further moments to unfold. The reality is that in this moment, I’m living with severe chronic illness. I’m in unrelenting physical discomfort. Walking to and from the bathroom is becoming more and more difficult and I have no idea how much worse it can get. That’s when the spiral of fear sets in. But God asks, “What are you gonna do with it?”
Whenever I would ask my Dad about God, he’d reply with a 10 minute sermon. Then he’d send me away with a book recommendation. I’m sorry to say that I rarely listened to the sermons and I never read the books. Then, for almost 25 years, I was the music director of a Unitarian-Universalist church that rarely mentioned God. All those years, I often held a deep longing for more God language. Today, I’m active in a 12-step program that talks about God all the time. To be honest, for years, I’ve struggled with all the God talk in the program. But these days, I’m open to it. I’ve got no where else to turn.
Lately, I’m getting most of my ideas about God in my float tank, my daily meditation readings and my conversations with 12-step fellows. I appreciate the principle in 12-step recovery that we don’t enter into theological discussions or arguments on the subject of religion. It’s a “spiritual” program. Each person is free to find their own understanding of a power greater than themselves. Some choose to call it “God.” Others might call it “higher power.” Everyone is free to believe or not believe what they wish.
So… when I talk about “God” here, I’m not talking about the God that you might think I’m talking about. I’m not talking about your understanding of God. I’m not talking about my Dad’s understanding. I’m talking about the God of my own (mostly lack of) understanding. There. Now that that’s clear…
I'm right smack dab in the middle of a spiritual crisis. You could call it a spiritual opportunity, I suppose, but it feels more like a crisis. The person who I thought I was is no longer. All the things that I took for granted no longer exist. I was a guy that thrived on nonstop creating. I had endless to do lists running around in my head and I was rarely satisfied with what I got done. Even though I lived with mild/moderate ME/CFS for 29 years, I’ve been more of a human doing than a human being. I still hold the faulty belief that If I do enough, then I will be enough.
Today, I’m living in a whole new reality and I’m grieving the loss of my previous one. The last seven years were some of the happiest and most content years of my life. I was the scooter riding, guitar strumming, ping pong playing, banakula shaking, harmonica blowing, concert giving, frisbee throwing, Go club organizing, music directing, talk show hosting, video creating, Tik Tok posting, garden growing, grocery shopping, meal preparing, solo living version of Hal. To top it all off, I was in a loving relationship with a beautiful woman who was my best friend. Now, with all of that stripped away, I’m in a painful search to find out who I am. All that stripped away, it’s just me and God floating together in the float tank and writhing together in bed. It has been excruciatingly difficult. Somehow, I have to make peace with just being. Somehow, I need to find a new version of myself. Somehow, I've got to come to terms with this reality. As I said before, I’m smack dab in the middle of a spiritual crisis. God help me.
The other day, I had an inspiring phone conversation with a 12-step fellow. It blew my mind a little bit. This guy’s words were on fire and it was my story that was coming out of his mouth. Basically, there’s this God-sized hole in me and I’ve spent my whole life trying to fill it up. I tried to fill it with muffins, coffee, sex, marijuana, musical instruments, relationships, creative projects and Tik Tok views, to name a few. But no matter how much of it all I took in, it was never enough. I was never satisfied. I’ve spent my life trying to fill this God-sized hole and the only thing that can fill it is guess what… God. And I have no idea how to talk or even think about God. Heck, I don’t even believe in God. But it all makes so much sense to me.
This fellow went on to continue telling my story. He was talking about God’s will versus my will. I’ve always known very clearly what my will is. My will is to get the thing that I want — even if it means hurting myself or others. If I get the thing that I want, then I'll be satisfied. Take, for instance, that Harpejji in the other room. During the brief window of time this Spring when I was feeling better, I got it in my little brain that I needed a harpejji. I was gonna become a harpejji player. The harpejji now sits in my office unplayed and hangs on my brain as a bit of burden. Oh my goodness.. Is this an example of doing the same thing over and over and expecting different results, or what?! (see Hal, the Imaginary Harpist)
God’s will is different. Maybe God’s will is not about acquiring things or arranging circumstances. Maybe God’s will is what is. Maybe It’s about wanting what I have and finding the good right where I am. Take for instance, this illness. Someday, I’ll gather up the gumption to share with you all the blessings that ME/CFS has brought into my life. God's will requires great compromise and I’m usually not up to the challenge. But for today, I want to be done pulling the strings. All I have to do now is float down the river of life, smile, compromise and trust God. Sheesh. Can I say “Thy will be done” and really mean it?
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
That phone conversation really spoke to me. But five minutes later, I got a call from another fellow. She started by asking me a bunch of questions about my condition and I followed by answering. Each time, she would reply, "ooo, that sounds bad." She asked, "Do you have anyone helping you?" and I said "yes, I have a full-time caretaker." She said, "Oh, gosh, that does sound bad." Everything I told her she was like, "Ooo, that sounds bad. I'll pray for you.” I left that call really shook. Reminded of how “bad” it really is, I dialed my sister and cried my heart out for a few minutes.
I'm in a major life transition. A life transition that I didn't choose. From Hal Walker, the super man musician who can do everything, I’m transitioning to something else and I don’t yet know what that is. But I’ll tell you. I've been hanging on to the old identity with every fiber of my being. For the last year, I’ve been trying to squeeze out every last little bit of creativity before it’s too late — including this post right here. I imagine that all that pushing has played some role in the progression of this illness.
I have moments of hope though. I’ve learned that when I fight, the illness always wins. The only way to beat ME/CFS is to get underneath it and to surrender to it. Really, there is no beating it. For my whole life, I've been hungrily searching for more and it’s time to lay back and bask in what I have. This illness is presenting me with an opportunity to find another path. There is another path for Hal Walker. It’s not gonna be easy. The grief and the fear are often overwhelming, but at times, I'm hopeful.
Two weeks ago, it became very clear to me that I was in need of full-time care again. I called a friend to help face the daunting task of piecing together volunteers. On that very same day, out of the blue, I got a Facebook message from my friend Heidi letting me know that our Kenyan musician friend, Mango, needed work and a place to stay for the next couple months. He came over the next day to talk details and he’s been living here ever since. Mango gives me a foot massage every morning and a full body massage every night. Within the first week, he deep cleaned my whole house. He has a wonderful smile and a great sense of humor. I couldn’t ask for better chemistry with a live-in helper. Mango is very clear that it’s God that brought us together. I’m willing to go along with that. Thank you, God. Thank you.
Follow me on Instagram. (132k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. This week, WKSU did a 35 minute feature on my story of living with ME/CFS. I was joined by the the Founder and CEO/President of Open Medicine Foundation, Linda Tannenbaum. I so appreciate my friend Jeff StClair, who helped to make the whole thing happen. I know I ask this a lot, but this time I’m serious… Would you please share this post with one person? Please help spread the word about this devastating illness that is terribly underrepresented in the media. Thank you!
Living in a Body in Rebellion
Rick Jackson — It is the Sound of Ideas from Ideastream Public Media. I'm Rick Jackson. Thank you for joining us this Tuesday. I hope you had a safe and relaxing holiday weekend. Today we'll be talking about the roughly 2 million Americans who suffer from a poorly understood, often debilitating illness - Chronic Fatigue Syndrome. Actually, its full name is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, generally abbreviated as ME/CFS. This hour, we will begin by meeting a local musician who has been documenting his struggle with ME/CFS for years through social media. And while his story may sound rare, health experts predict that more people will have to deal with Chronic Fatigue Syndrome in coming years because it's one of the most common symptoms being reported by the roughly 20 million Americans with Long COVID. First, we'll hear about what it means to live with ME/CFS disease from a local musician. In around 15 minutes, we'll take your comments and questions, as we bring in a researcher who's leading efforts to better understand this devastating condition. So here's Ideastream Public Media's Jeff St. Clair with the story of a friend who's living with chronic fatigue syndrome. Hi, everyone.
Hal - Hi everyone, my name is Hal Walker. I've been living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a very severe form for the last six months.
Jeff StClair — What is Myal…
Hal —Myalgic Encephalomyelitis. And it's not just that I'm tired all the time. It's not that I'm working too hard and not taking care of myself. It is a… it's a different kind of fatigue. It's a different kind of illness. When I go to the doctor, I'm perfectly healthy, you know, blood pressure is perfect. All the tests are perfect, but for some reason I'm 90% bedridden.
Jeff — I've known Hal Walker for around 30 years. And until late last year, I didn't really know what he was going through - that he was dealing with a debilitating and poorly understood chronic illness.
Hal — It's kind of like a flu-like weakness. You know, my ears are ringing. My brain is very sensitive. My eyes are very sensitive looking at screens. But mainly I just feel like I gotta go lie down
Jeff — Hal plays guitar and piano. He's a singer and songwriter, but his specialty is playing instruments that fit in your pocket. Like the jaw harp. Before the pandemic, he made a living performing in schools.
Hal — I'm a teaching artist and I worked with several different organizations like the Center for Arts Inspired Learning - they put Artists in Schools - and then I also worked with the Ohio Arts Council as an Artist in Residence. For 20 years now, I've been doing residencies in schools.
Jeff — Hal says "Right before the pandemic, a new door opened up."
Hal — I was giving an assembly for some fifth graders at Sacred Heart Elementary School in Akron. And during the question and answer time, a little fifth grader raised her hand and she stood up and she said "Are you on TikTok?" And I said "No," and she said "You should be." I went home that night and I downloaded TikTok. And then on January 1 of 2020, I posted my first video, and I basically have posted at least one video every day since then. Before TikTok blew up and became such a big thing, I got in right under the radar and made a name for myself before the pandemic started and now I have 1.6 million followers.
Jeff — Hal Walker's breakout hit feature an obscure instrument from Southeast Asia, a sort of bamboo harmonica called the Khaen. It's called Low Key Gliding. This groove caught fire with young TikTok artists and producers whose remixes attracted millions of views. One of the fans of Low Key Gliding is the band Coldplay's frontman Chris Martin. Hal recently met with Martin. This is a video of that lesson posted, of course, on TikTok. (Hal: Keep your thumb down. Chris: So fun! Oh, my god!) But this is not the story I'm here to tell. That story starts in a different time and place. Last September, Hal reached out to friends to help him survive his debilitating episode of ME/CFS. I was worried about Hal. He was in a bad way. And so I did what any radio producer friend would do. I gave Hal a microphone and a recorder and asked him to record what he was going through. And here is his story of living in a body in rebellion.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Hal — Hey Jeff... It was a very rough day today. My symptoms keep getting worse by these things called crashes.
My sister encourages me to call them temporary shift in symptoms but they feel like crashes. And I keep having them like every five or seven days. And I don't know why I'm having them. And none of the doctors know why I'm having them. None of the doctors have anything to offer to stop them from happening. So anyway, I had about four or five days of kind of getting adjusted to the new normal, and I was feeling a little bit better about that, like, okay, I can handle this. And all of a sudden, my whole body just filled up with adrenaline. And my heart rate went up to about 92... 95. Here I am in the middle of a crash. No particular reason. They say crashes can happen two days after whatever triggered it. So it's very hard to know what is triggering it. This afternoon, it's been a very difficult afternoon I've been very sad, very, kind of hopeless, very despondent. But I just wanted to tell you about this rough day I had.
Check one, two, check one, two… I spend most of my day in fear. Like I think of this illness as a monster. And I'm very afraid of it. I'm especially afraid of it getting worse. But my daughter was suggesting that this is an exciting time for me. Like if you didn't know that there was something on the other side of a birth, if you didn't know there was a baby, you would go through all this pain and it would be so much pain, but then you would find out on the other side that there was something very beautiful that came out of it. So I guess I much prefer looking at my situation like that. But the truth is, I More often have a more tragic view of it like I'm dying and, you know, with all my all that potential I had was lost, but I I'd like to shift my thinking to this is an amazing opportunity to birth and along with birthing comes a lot of pain.
Okay, and I'm out of breath now.
So I was just thinking I have spent the whole day in bed. I was just crying a little bit and thinking how long can my body handle this? How long can a body stay in bed without totally falling apart? I mean, I'm already falling apart. And I'm this amazing inspiration on Instagram and Tiktok all these kids are inspired by me. I don't want to be an inspiration. I don't care about being inspiration. I just want to have my body back. I just want to have my body back.
Hey, it's been a very challenging day today. I had the social day yesterday I had a friend over for several hours, engaged in some whispering conversation. I don't know if that's the cause of today but I'm very, very weak today and very little breath for speaking. I guess I just want to say one thing. Who I was has died. And now I'm not who I thought I was. And my job now is just to survive. I'm not feeling very inspired right now. I'll tell you more later.
So I've been questioning whether my role in social media has had any role in the worsening of my illness. You know, I don't know why I keep having these crashes. Why I keep having these sudden downturns of symptoms, you know, and they talk about stimulus, the stimulus of the brain and how our brains are just so sensitive. I'm extremely sensitive, even just the slightest thought gets my nerves on edge. I have a highly sensitive nervous system with this illness. I always did, but now it's just insane. The smallest amount of activity or the smallest anxious thought can just set off a whole body reaction. This morning was one of the hardest mornings of my life, I was very ill... some very dark thinking. I guess the point of my post was, you know, I get excited about something. I write about it, or I talk about it. But then I have to face the hours in the day... of being by myself in a dark room. Feeling like a time bomb is about to go off in my body.
Everyone thinks their illness is the most difficult but they actually say that ME/CFS has the lowest quality of life. And the number one cause of death is suicide. But I'm surviving one day at a time. All right, bye.
Jeff — It was around this time that house friends and family started planning a fundraiser to help him cover his living costs and raise money for ME/CFS research. 25 musicians from all over the country, including Coldplay's Chris Martin signed on for "a Love Song for Hal."
Hal — Well it's been several days since I've recorded anything. I've been in this wild kind of social media frenzy. In the last three days, I've received 25 million views on Tik Tok... all old material and stuff from the files. And it's sort of kept me occupied. About five days ago, I had a weird adrenaline surge at night. I woke up in the middle of the night and had this experience of my body dumping adrenaline. My whole body just filled up with this crazy energy -- really uncomfortable. But then ever since then I've been feeling a little better. It's a very tenuous, you know, I don't really believe this energy. Because it's weird energy. It's weird adrenaline energy.
I'm sure a part of it is fueled by this social media craze that's happening. Where I'm just achieving some sort of legend status on Tik Tok and Instagram. All the while I'm bedridden. And I'm telling my story on social media. I'm being very honest, I have this opportunity. I have this amazing platform -- 1.3 million followers on Tiktok. And they're all, many of them are learning about ME/CFS for the first time. All right, I'm glad I picked up the mic again. I'll try and keep it Going more regularly?
Jeff — So, how did you feel right after the benefit concert earlier this year?
Hal — I don't know if that's the right question.
Jeff — Well, I kind of want to catch up because it seemed that you had gotten better. You were able to travel.
Hal — Yeah, I saw some improvement after the benefit concert. And that improvement came crashing down within the last month. I'm pretty much completely bedridden.
I want to call attention to all the people who are suffering in silence, and who probably don't have the right care, who have lost their jobs, have lost their income. But I just want to call attention to all the millions that are missing. And I'm grateful for this opportunity to have a little platform to spread the word.
Rick Jackson — You're back with the Sound of Ideas on WKSU Ideastream public media. I'm Rick Jackson. Thank you for being here. Today we're talking about a disease Myalgic Encephalomyelitis, which is also known as Chronic Fatigue Syndrome. We heard from local musician Hal Walker in the first segment of the show. Our Jeff StClair shared that story. Good morning, Jeff. Thanks for doing that.
Jeff StClair — Hey, Rick, good to be with you. I just want to mention that all the music that we heard in that piece was written and performed by Hal.
Rick — That was wonderful. Good job. Thank you. Also, here is Hal Walker. Hal, good morning. Thank you for the time today.
Hal — Good morning. Thanks for having me.
Rick — How you feelin' today?
Hal — Well, I'm not feeling so well.
Rick — Okay. Well, thank you again for taking the time to go through this next few minutes with us. Also joining us Linda Tannenbaum. She's CEO, and founder of the Open Medicine Foundation. That's a Research Consortium looking into Chronic Fatigue Syndrome. Linda, welcome to the Sound of Ideas.
Linda Tannenbaum — Thank you so much. Thank you for so much for including me
Rick — To join this conversation, to add your thoughts, 866-578-0903. You can also email us soi@ideastream.org. You may Tweet us at Sound of Ideas. Now, we just did hear more of Jeff's profile. We'll talk with Hal more in just a moment. But first, I want to talk to Linda for a brief explanation of the name, Myalgic Encephalomyelitis. It's a mouthful. What exactly do all those terms mean?
Linda — Oh, well, thank you for asking. Just before I begin, I just want to thank you Hal for, for sharing, really, what you're going through, it really described the disease from a personal nature and really kind of helps everybody understand what this is, because it's a mouthful, Myalgic Encephalomyelitis. And it used to be called Chronic Fatigue Syndrome, mainly here in the United States and Myalgic Encephalomyelitis in Europe and other places. And basically, it has to do with the inflammation of the brain and the muscles. And so those words together - Myalgic Encephalomyelitis - is how that came to be. And here it was called Chronic Fatigue Syndrome by the CDC, which gave it that name in the mid 80s. Because one of the main symptoms was really profound fatigue, and there's so many other symptoms, but that's what they ended up calling it, which ended up being a very bad name, actually, because Chronic Fatigue Syndrome kind of minimizes what this horrible disease is.
Rick — You mentioned the main symptoms there, what we see, but do we know what the cause is? You mentioned brain?
Linda — It's a good question. And the million dollar question. We don't know what the cause is, which is what all this research is all about. Because they're trying to find the cause. So they can find basically biomarkers to set up treatments. And they haven't found the cause yet. So basically, between genetic and environmental factors, where is the cause? Most of the people who get this disease - about 80% or so, if they want to give some statistics to it - it's caused by a post-viral or post-infection, illness, and which is why we're so concerned about this with with COVID and long COVID. Because most people have initiated this by a viral illness or some type of illness.
Rick — Hal Walker, wanted to ask you about your experience with MECFS. I know that as we discussed diagnosis, that's not the right word. But what were you told? How did you find out that this is what you were suffering?
Hal — Well, the original onset for me was in 1992. And I had a sudden onset of weird symptoms in my body. I had been a long distance runner. And suddenly overnight, I couldn't run across the street without needing to lie down. And on my own, I learned about Chronic Fatigue Syndrome. Years later, I learned about the name Myalgic Encephalomyelitis. And in northeastern Ohio, it's almost impossible to get a diagnosis of ME/CFS. But, you know, most doctors have never heard of it or don't, don't have any ... it's kind of a non diagnosis. And then once you have the diagnosis, doctors wouldn't know what to do with it. But I have recently gotten a diagnosis of ME/CFS. And I'm not sure what good that does. But I've known I've had it. You know, there's a whole community of people that I relate to and I've known I had it for years, but no one was willing to tell me that's what I had
Rick — Linda, he brings up some interesting points and he specified that he couldn't get a research person to talk about it or give him a diagnosis here in Northeast Ohio. Is that common around the country? The idea that doctors don't know? The idea that there are regions where it's just not studied?
Linda — Yes. In fact, even the CDC says that up to about 90% of people aren't even diagnosed because doctors just have no idea what this is and as Hal talked about earlier, all of the tests that a particular clinician might do on a patient, they're all normal. And so they can't figure out what is wrong with people. And sadly, most doctors just dismiss it and tell people to go home and rest. And there's nothing that can be done about it, because they don't know what this is. So, in fact, we are setting up an entire medical education project this year, because we have to start training doctors on, at least, how to diagnosis this, and how to treat some of the symptoms, because most doctors do not know what this is, how to diagnosis this, and what even to do for the patients.
Rick — That's got to be tremendously frustrating, I would think, for those of you professionals in the field who want this out there.
Linda — Yes, it really is. It's just horrible. I live in Los Angeles, and they don't even diagnose it here. I mean, it's just horrible.
Rick — You mentioned that you live in LA. Is that where the center is based?
Linda — Yes, that's where our nonprofit is based. But basically, we're virtual. So we have people that are all over the world working with us. Yeah.
Rick — When you talk to doctors, what do they tell you? I mean, surely, you know, they look at you as somebody with some authority, because you do run the nonprofit, but do they just kind of deny you as they would deny a person who's suffering?
Linda — Well, we deal with doctors that really know about this disease, helping us kind of create information and resources to train other doctors that, basically, that we don't know, all the primary physicians that are out there that are local to people. Because really, there's only literally a handful, not even a dozen doctors that really work on this disease with any type of specialty whatsoever. So our job and our responsibility right now is to find those doctors to let them know and to figure out how they learn. So we can get in that space, and let them know about this disease that they don't know about and COVID and long COVID have opened those doors widely for us. So we are taking advantage and leveraging that, that people who come in and say they're sick even after they've had and they're over this disease, what is wrong with them, and so many of them are transitioning to ME/CFS, we are able to open that conversation, because most doctors aren't haven't been open to that conversation.
Rick — You talked about the very few doctors who are working on this. I was kind of wondering how did you get into this? Was there a family member? Or what led you into something that's very specialized?
Linda — Yeah, thank you for asking. Our 16 year old daughter came down with this. Actually, for her, it was sudden onset. We don't even know why - she didn't have an infection. And she just suddenly -- She was 16. And I dropped her off at school. And at eight o'clock in the morning - at 8:20 - they called me from the nursing office and said that she was sick. And we ended up in the emergency room. And, and again, they didn't know what was wrong with her whatsoever. So it took us 20 different doctors to find out and actually get a diagnosis of ME/CFS. At the time, it was called Chronic Fatigue Syndrome. And we said well, there's so much more than fatigue of what's going on with her. And they said, Well, that's -- out of the exclusion of everything else, this is what she has. And the only thing you can do at all is pain management, because there is no treatment. So our daughter was bedridden, totally bedridden. And she was one of these top A students, an athlete, and volleyball player, and then suddenly she was in bed and she was bedridden. So I said, Look, we've got to do something about this. And so that's how I got involved. Because when I started researching it, I found out that there were no other people that were researching this for any type of treatment or help or diagnosis. And I didn't want people to have to go through 20 different doctors to get a diagnosis and, and so I figured we needed to do something. And I was in the laboratory diagnostic business. So I was able to test every test I could possibly test in the clinical lab and saw that everything was normal. So something else needed to be found out about this. So I got involved with this, because I had to. I was a desperate parent. And that's usually how nonprofits in the medical space happen - from desperate parents; they're trying to cure their kids. And that's really where I was at. And I told her as soon as she gets out of bed, I'm going to set up a foundation to try to fundraise for this and try to get some researchers together to do this.
Rick — You said she was 16? How long ago was this?
Linda — 2006. So she's 32 now.
Rick — Okay, thank you. 866-578-0903, if you want to weigh in. Linda, Rosemary writes in to say "Is there an intersection, a common denominator between Lyme and people who are suffering chronic disease?"
Linda — That's a very good question, because there definitely is. People who have post treatment Lyme or chronic Lyme, what they're calling it, have very, very similar if not the same symptoms as ME/CFS. And so what we're hoping in the research world is that whatever we find, as far as treatments, that it will cross over and help people who have these these chronic conditions, because - we now call them multi system, chronic complex diseases, and Lyme, chronic Lyme, post-treatment Lyme, is definitely one of them. Yes.
Rick — It's kind of interesting, as people are becoming more aware of this, I got a tweet that came in, Hal, someone who wanted to thank you for sharing your story, and just talking about this in a public sense. She writes that it's kind of amazing to hear a story from someone with ME/CFS. Rarely does anybody know what she's dealing with on a daily basis. And Shelby just wanted to thank you for sharing and bringing awareness. Do you have other people who reach out to you and say, "Gee, thanks for putting a name to what I didn't know."
Hal — I have a few people. You know, I have a social media presence. And every once in a while, I'll get a direct message of someone that says, "Thank you for speaking out about this illness I've been in. I'm living in silence. So many people are living in silence, suffering." And, you know, most people don't have the kind of platform that I have. So I'm grateful to be able to call attention to the millions missing. And every once in a while, I hear from one of them.
Rick — Jeff StClair, as you were starting to put this together, were you finding that there's a lot of people out there who really responded?
Jeff — Well, I didn't know really much about it. And I think most people didn't. And it wasn't till Hal told me about this documentary called "Unrest," that is a filmmaker who had ME/CFS put together, and it's amazing. And then I began to understand what he was going through. But, you know, it's been an education for everyone, including his family and friends, trying to understand this. It's such a mysterious condition, that someone looks fine, and then you've soon realized that they just can't function and they're in intense discomfort. And it's heartbreaking. It's really, you know, just one of those, I don't know, profound mystery filled with profound frustration, too, because there's no, there's no treatment. And everyone, you know, you just hope that there's some cure, that we all have such faith in the medical industry that, you know, we're gonna come through, but this is a case where that's not happening.
Rick — He mentioned the documentary "Unrest," that's a six year old documentary currently showing on Netflix. It's a 28 year old PhD student who turns the camera on herself to talk about her struggles with Chronic Fatigue Syndrome at that time. Linda, your organization, you mentioned research teams all across America are involved in trying to better understand. Wanting to make sure that we mentioned that nearly 2 million Americans have this - more than twice the number of people with multiple sclerosis - yet last year, MS got about $125 million in research. What did you get?
Linda — Last year, last year, we raised $7 million. And we've raised about $36 million over the last 10 years. It's very hard, because we're raising it in the private space, you know, and people who give us money are really just the people who have this or have somebody or a loved one who has this. It's very difficult to raise money in this space.
Rick — Not that there's much good that came from COVID. But the idea of bringing attention, do you think that's going to help us to find not just the dollars, but the research, and maybe eventually a cause?
Linda — Yeah, we're all hoping. You know, we have hope on this, that there's a lot more researchers that are involved with this. And as they research long COVID more, that they'll be able to find some treatments for some of the symptoms that show up in the long COVID world. So we are hoping and we're all talking to people who have long COVID and researchers and clinicians who are seeing patients with COVID. So it might be the only silver lining of COVID at all, but it has certainly opened the conversation about this disease, because this disease has been so stigmatized, and not validated for so many years. And it's really brought it to the forefront even in a lot of media, luckily.
Rick — Is there a fear that, as it becomes known, we're going to see an overflow of people to the few centers that do work on it?
Linda — Well, they're already overflowed tremendously. So the ME/CFS researchers, you really literally have six months to a year wait to even see one of those the clinicians who see patients that have MECFS, but there's some long COVID clinics that are being set up all over the United States. And we are hoping to educate them to let them know what already is known about this particular disease, and what how they can help some of the symptoms here. So yes, they will be overflowed. I mean, as far as long COVID, they think it'll really double or triple the number of people with ME/CFS and it's just horrid to think about how many people are going to be suffering with this chronic disease.
Rick — For those who just joined us. We're talking with Linda Tenenbaum, for a few minutes more here, founder and CEO of the Open Medicine Foundation specializing in research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. We also have on the show today musician Hal Walker, who's struggling with the disease and Ideastream public media reporter and host Jeff St. Clair, who produced the profile were heard earlier. I wanted to get to the phone. Dee is calling from Northeast Ohio. Dee, Linda is on the line with you as are Hal and Jeff. Go ahead. Welcome. What's your question?
Caller Dee — Oh, hi, it's mostly a comment. I'm quite familiar with much of his description. And for years, this has been going on and a lot of doctors either didn't believe me or told me it was something else. And especially women, and now that there's some more male voices and more people getting this because of COVID, I'm hoping there'll be some work towards a solution. But I've been told it's everything from emotional, psychological, CFS, Fibro, MCS (Multiple Chemical Sensitivity), Lyme, and really, it just means -- it's just another name for "we don't know," they just don't know. And, you know, there's been nobody, really, no fundraisers or community support. I did come up with something, my own little thought, my thought go-to - call it self help - and this is what it is. When you're talking about an "it," whatever "it" may be - a fear, anxiety, depression, whatever, whatever that you say scares you about this - I say, "It could happen. It probably won't. But if it does, I'll deal with it." And I repeat that a lot. And it seems to help. Another thing is to take it a day or an hour at a time. Take what you can while you can, and be grateful. And one of one of my mottos is, I'm so glad it's not worse and you know, do what you can while you can. I really appreciate, finally some information publicly being shed on this issue, because it is kind of tough, in this day and age. So I love y'all,
Rick — Thank you for the call, Dee. Appreciate it. Hal, do you agree with that, take what you can while you can deal with it - hour, day, week at a time, whatever it takes?
Hal — I agree with everything she just said. Yes. I'm so grateful it's not worse. I'm afraid that it might get worse. But if it does, I suppose I'll keep surviving. And also take it - I'm more like, take it 15 minutes at a time. I have a timer that I set for 15 minutes and you know, I can survive the next 15 minutes.
Rick — Is that something, Linda, you hear from your daughter - 15 minutes, a day, a little bit of time, whatever it takes.
Linda — Well, thankfully, our daughter was severe for a few years, but she's much better now. So she's one of the lucky ones, probably about 5% of people who really are able to get better. And mostly they attributed that to her getting it so young. So she is living her life now in a much better way. So she's not at that point. But she was at that point. So I understand it fully. I saw it and lived with her, while this was happening.
Rick — Five Percent. That's amazing that many people do recover -- that that few people do recover. Hal, I know you have to have hope that as we close here, you have hope that one day you can get to that point where Linda's daughter is where you can live a more normal life.
Hal — I'm not sure how much hope I have. But I'm trying to practice that kind of thinking. Yes.
Rick — Well, Hal, thank you so much for again --
Linda — I'd like to leave with some hope, if I may. You know, we are researching this in a very big way. And the researchers really do feel that at some point, this could be reversible, meaning if we find the cause and find a way to treat this, that it's not a deterioration of the body. It's something that could be reversed and there's a lot of hope there on the research side. There's a lot of research happening. There's a lot of hope. And I have hope that we will be able to find something and get people like yourself, Hal, back to health with this.
Rick — Linda Tenenbaum, with the Open Medicine Foundation. Thank you and Hal Walker. Thank you for sharing your story. We wish you both the best. Thank you very much.
Linda — Thank you so much for doing this.
Rick — Yeah. Jeff Sinclair, I'll see you upstairs. Good talking to you. Thanks for the report today.
Follow me on Instagram. (132k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is “Living in a Body.” Welcome! To hear me narrate the story, please click the “Listen Now” button above. (5 minute listen) Also, please help this community grow by sharing this episode with one friend. Thank you! Hal
The Nemesis Triangle
I know. The past is history, the future is a mystery and the present is a gift. If you know anything about my story, you know that the present has been pretty rough on me lately. Lying here in bed with my ears ringing loud into my head, I often think about wanting to go back. 2019 is the year I choose. It was the year of table tennis, the Kent Go Club, the garden and the benches. It was the year of Summer Institute, Boulder Story Slam and trips to Ithaca and Pittsburgh with Kim. Finally, it was the year I downloaded TikTok. I’m sure there were all kinds of challenges along the way that year, but from where I sit now, 2019 was a bit of a glory year.
I was spending 2-3 nights a week at the Samson Dubina Table Tennis Academy. It was starting to become a home away from home for me. With table tennis shoes and a semi-pro paddle in my backpack, I’d walk in through that front door with a great sense of excitement and anticipation. Regularly, I could count on shouted welcomes from the floor, “Hal!” This was my dream come true. I was part of an athletic community. Of course, living with a mild version of ME/CFS, I had to be careful not to over-exert too much; but night after night, I was getting a real good workout. I could even say that I was getting in shape a little bit. I loved getting home and climbing into my float tank to ease my hard-worked muscles.
The greatest thing about the SDTTA is that it’s an all ages/all levels community of players. People of all backgrounds come together for the friendly and vibrant competition of open play, league nights and tournament weekends. Even though I’d been playing “Ping Pong” my whole life, I was a beginner when it came to the sport of Table Tennis. I often found myself in matches with “children.” Mind you— these are children under the coaching guise of one of the greatest Olympic level table tennis coaches in the world — Samson Dubina. I’ll never forgert how nervous I was the first time I played Samson’s 6 year old daughter, Kenzie. She was so serious and so good. I recall that we had a pretty close match though.
With about 30 tables on the floor, there is a friendly culture of invitation at the Academy. One day, I noticed “Mark” in a training session with his very stern father (who is an old Table Tennis pro from Russia, I believe). I mustered up the courage to ask Mark to play a game. I had a feeling we’d be a good match and I hoped that some of his skills might rub off on me.
Early on, Mark introduced himself as the second best nine year old player in Ohio. Mark and I had good matches and amazing rallies, but in the end, Mark would always win. Mark became a bit of a nemesis for me on the table tennis court. I really wanted to beat him, but I just couldn't figure out a way to do it.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Later on that summer, I met another young guy on the court. After I got the courage to ask him to play, I found out his name was Chester. We were warming up and having a nice time and I asked, “So Chester, how old are you?” And he said “I’m Nine… as a matter of fact, I’m the best nine year old player in Ohio.”
I said, “You’re nine? Do you know Mark?” And he said, “Yeah, Mark’s my nemesis.” Then I exclaimed, “Wait. Mark’s your nemesis?! Mark’s my nemesis!” I laughed out loud and cherished for a moment the fact that I was part of a nemesis triangle with two nine year olds.
Of course, the young guys progress much faster than the old guys so Mark and Chester quickly flew right past me into the higher levels of play, but for a minute there, I was in 9 year old heaven. If I were actually 9 years old, I’d want Chester, Mark and I to be best friends hanging out at the Samson Dubina Table Tennis Academy training under Samson himself. It doesn't get much better that that.
Thank you for listening and thanks for reading. I hope you have a great Saturday. Go play some ping-pong! Go check out the Samson Dubina Table Tennis Academy in Akron, Ohio. It’s a amazing place. I miss it so bad. Don’t forget to love that body of yours. Peace.
Follow me on Instagram. (132k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (5.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is “Living in a Body.” Welcome! To hear me narrate the story, please click the “Listen Now” button above. (8 minute listen) Also, would you consider helping me by sharing this episode with one friend? Thank you! Hal
101.5°F
To be honest, I’d rather be writing a publication called, “Low Key Gliding — Hal Walker Tours the World Playing the Khaen at Every College Campus from San Francisco to Bangkok.” This summer would be the perfect time to do it. I’m 56, I got no job, my kid’s supporting herself in Brooklyn and I’ve got 1.7 million young adult followers on TikTok. Imagine the stories that would come out of that Substack — this week Asheville, next week Boston, then London, Paris and Florence. I assure you. We’d have a great time.
But that’s not my story. That’s not my publication. My Substack is called, “Living in a Body — Hal Walker weaves music, stories and community from his bed while surviving moderately severe ME/CFS.” My story goes like this:
On Thursday, I woke up with a terrible case of diarrhea, a raw throat and chills all over my body. In the morning, I took a COVID test that showed up negative. I spent the day writhing in bed, crying on the phone to my dear sisters. It was a rough one. It was 92 degrees outside and I live in a house with no air-conditioning. In the late afternoon, my 90 year old mom came over to rub my feet and to bring me fans and an oral thermometer. Thursday evening, my temperature started at 99.5° and then went all the way up to 101.5°. When I saw the 101.5°F, I freaked out a little bit. I called my next door neighbor Merl just to let him know what was going on. I appreciate that he said I could call back anytime through the night. Merl and I look out for each other that way. He’s the best neighbor ever. I swallowed two Tylenol PM’s and slept till 5 in the morning. Today, I took another negative COVID test. The raw throat and the diarrhea continue, but thankfully, my temperature is back down to 99.5.
There you have it… living in a body. It really sucks sometimes. I’d much rather be writing about Asheville, Paris and Bangkok.
Health wise, I had a “better” day on Wednesday. Whenever I have a better day, I start planning my life around “better” days. On Wednesday, my plan was to find a collaborator on Instagram, release a series of ringtones and rebuild my website to sell samples of my music in a shop. These days, a “better” day means that I’m not overwhelmed with illness. It means I can put my focus on other things besides just surviving the next 15 minutes. A “better” day means I can sit up in bed or at my computer for a whole 45 minutes and I can even do a little weeding in the garden. The reality is that the definition of a “better” day has changed so much in the last year and it keeps changing. This illness has been a traumatic and perpetual practice of adjusting to new normals. Right when I get adjusted, something weird happens - like Thursday. Because I’ve gotten so accustomed to symptoms showing up and never going away, any new onset of illness is scary.
Recently, I asked a friend what she has faith in and I loved her response. I can’t quote it exactly, but it went something like this:
“I have faith that around every corner, there will be a simple joy — a cup of tea, a conversation, a meal, a quiet breeze, a person, the night sky…”
That’s just the way she lives. I told her that that’s the way I wanna live and she asked, “Then what’s stopping you from living like that?” I think my answer may have been something like “living in this particular body.” I realize that there’s no excuse for my reluctance to have faith in the simple joys around every corner. But c’mon, you try being sick at home for months on end and see how much simple joy you conjure up. Lol. I’m sorry about that. With all this time spent on the toilet in the last couple days, I just couldn’t resist putting that line in there.
From what I hear, whatever I focus on will grow. So, let me tell you about my celery juice in the morning, the light that turns on underneath my bed at night, the view I have from my toilet all day long and these fans that are blowing in my window right now — simple joys around every corner. I’ll close this episode by telling you about a big joy that happened in my life on Wednesday.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Kenge Kenge Orutu is a traditional Luo tribal music ensemble from Kenya. We became friends when they visited Kent in 2019. For me, Kenge Kenge’s performance was one of the highlights of the “A Love Song for Hal” benefit concert in January. They’re back in Ohio for the month. On Wednesday, they took the time to hang out with me on my front porch for about 45 minutes. We spent most of the time playing music. As you’ve heard before, when there’s music to be made with others, I pull from the reserves to join in on the festivities. It was an honor to spend time with these guys. Imagine that… all the way from Kenya to my front porch. Maybe I’ll stop in Kenya on my next world tour. :)
If you’re in NE Ohio, I encourage you to seek out a performance by Kenge Kenge while they’re in town. Here’s a Facebook event with some locations and details. I’m including a TikTok clip of our jam session below.
Thank you for reading this far. Thank you for listening. Truly, it means a lot to me. I’m gonna go back to bed now. Hang in there, everybody. Don’t give up. Be sure to love that body of yours. Remember, if you’re willing to believe, there’s a simple joy waiting for you around every corner. Hal
Follow me on Instagram. (124k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. This week I’m celebrating two milestones for this publication: 20 episodes and 500 subscribers. Yay! If you look forward to reading “Living in a Body” every week, I hope you’ll consider becoming a paid subscriber.
Due to my health, I’ll be taking some weeks off this summer, but hopefully there are more episodes in there somewhere. Thank you!!
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
The Legend of Casey Jones
At some point in May, I changed my Instagram bio from “Living with Severe ME/CFS” to just “Living with ME/CFS.” Pleased with what seemed like it could my “new normal,” I had big hopes for a summer with some freedom from the bed. In a conversation on the phone, my friend Jerry brought up the subject of “pacing” and I rolled my eyes a little bit. “I’ve been living with this thing for 30 years. Nobody needs to tell me about pacing.” And then Saturday, May 20th happened.
In the early 2000’s, I got to play the role of Casey Jones in Mad River Theatre Works’ touring production of “The Legend of Casey Jones” by Jeff Hooper with music by Bob Lucas. The play tells a story of the relationship between Casey Jones, the infamous railroad engineer and his friend Wallace Saunders, an African American railroad worker. It was an appropriate role for me. Casey was a guy that was never quite satisfied. He always wanted just a little bit more speed. He burned the candle at both ends and Casey ended up dying in the fire. Casey Jones was killed in a wreck in Vaughan, Mississippi when the train he was driving was going just a little bit too fast.
At the time of this acting job, I was living with a much milder version of ME/CFS, but I was always looking for a place to lie down. We were touring the show four days a week with a home base in West Liberty, Ohio. Over the long weekend, I’d come home to Kent to be a dad, the music director of the UU church and a director of the Summit Children’s Choir. Every week, after Monday night’s choir rehearsal, I would say another painful goodbye to Hallie and then I’d go off to live the role of Casey Jones — burning the candle at both ends. Fueled by coffee, a muffin and a couple hits of marijuana at the Lodi truck stop, I would cruise the late night three hour drive to West Liberty. Usually, at some point on the road, I’d make a solemn vow, “I can’t keep living like this.” The next morning though, the show had to go on, so the cycle would start all over again.
The following dialogue between Casey and Wallace tells my story quite nicely:
Wallace: The boys tell me you just worked a double shift and your name is on the schedule for eight in the morning. Don’t you ever sleep?
Casey: Not if I can help it, I’ve got too much work to do.
Wallace: What you workin on now?
Casey: Aw nothin’. I’m almost done.
Wallace: Ain’t that the safety valve from off a boiler? …That’s what it is alright. You’ve got a brand new engine. You shouldn’t be having no trouble all ready.
Casey: Wallace I‘m just making a few adjustments.
Wallace: Turn that screw any tighter and that boiler’s gonna blow before that safety valve do you any good.
Casey: I know what I’m doing.
Wallace: So Do I! and it ain’t right! You best turn that screw back where it belongs.
Casey: Wallace, Everybody knows! Baldwin double bolts their boilers. They can handle the extra pressure. I’m just giving myself a little advantage — twenty more pounds of steam. That’s all I want.
Wallace: You know what you got in your hands Casey — your life.
Casey: I’ll keep an eye on the pressure gauge. Heck, I probably won’t even use that extra steam.
Wallace: Then why do it?
Casey: How do you do it Wallace? It seems like no matter what happens, you’re always looking up.
Wallace: Aw it ain’t like that - you know it.
Casey: Truth is, I wish I could be more like you. I wish I could take what I have and just be satisfied. But, I’m not.
Wallace: One more fast run or 100 more fast runs… how’s that gonna make any difference?
Casey: I don’t know. All I know is I wanna be in the cab flying down the track like it’s got no end. It’s the one time I can shake the feeling there’s someone looking over my shoulder.
Wallace: One day Casey, the tracks gonna run out.
Casey: You know, I can take care of myself.
Wallace: I hope you’re ready!
Wallace: I was standing in front of the canton baptist church when I first got the word. A little boy came up to me and asked me if I’d heard about the train wreck at Vaughan Mississippi. Casey Jones was dead.
They say he had worked a double shift and he was trying to make up for lost time when he ran into the back of a stalled frieght on the tracks. Of course, there was an investigation and they found the doctored safety valve. They said the wreck was Casey’s fault. Some folks even say that Casey got what he deserved. they didn’t know him like a did. He didn’t mean to hurt nobody. Casey had a good heart.”
- Jeff Hooper, Mad River Theatre Works
On Saturday May 20th, I rode my scooter down to the Haymaker Farmer’s Market. My friends Rick and Renee welcomed me with open arms. They were so excited to see me upright, out of bed and riding my scooter. I carried a portable stool so I could sit down whenever I needed a rest. At the market, I bought a parsley plant, a couple cilantro plants and some good hard cheese.
One of my favorite vendors is a guy who sells fruit plants, shrubs and trees. That Saturday morning, I enjoyed imagining where in my yard one of those trees might fit. With my health turning around the way it was, planting a tree seemed like a hopeful gesture. When I got home, I took a good look at the spot where the pear tree used to be and I realized that it was time to take some action, but it was approaching 12:45. The farmers market would be closing at 1:00. I had just enough time to hop back on my scooter, return to the market and pick out a tree. A Fringe Tree caught my attention first. At that time in May, it was covered with beautiful drooping clusters of fringe-like, fragrant creamy white blooms. I paid the guy with Venmo and then together we tried to figure out how I was gonna get it home on my scooter. In the end, he suggested that he’d wait for me while I rushed home to get my car, so that’s what I did.
After lunch, I tilled the ground, dug the hole, planted the tree, watered the tree, watered the garden and created a whole series of Instagram stories. That afternoon, I set up my living room to record a song and went grocery shopping on my scooter. That evening, I had the gaul to pick up one side of the baby grand piano just to get a better angle for the camera. That night, I sat in the back room and found an awesome new jam on the khaen. (By the way, the next day, I posted a video from that khaen session on TikTok that now has 3.1M views). Saturday was a good day. You might say I had a little bit of Casey Jones in me — flying down the track like it’s got no end.
On Sunday, I woke up in a crash. The first sign was that my ears were ringing louder than usual. As you may have read in “I Love Crying,” that’s not a good sign. My legs were weak, my arms were weak, my breathing was labored and I felt sick all over. The CDC explains it like this: “ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is called post-exertional malaise (PEM).” Post-exertional malaise is the punishing reality of ME/CFS. It’s the aspect of the illness that makes it easy for me to blame myself for worsening symptoms — as if this is somehow all my fault. I assure you. Under challenging circumstances, I’m just doing the best I can over here. After a couple weeks of some relief, with no idea how long this crash was gonna last, I was once again writhing in my bed with illness — regretting what I had done to cause this.
As you may know, on that next Friday, I was supposed to travel to Chicago to meet Coldplay. I spent the entire week trying to decide whether or not I should cancel the trip. On Wednesday, I let my hosts know that it was unlikely that I would be traveling to Chicago, but on Thursday I decided that I just couldn’t pass it up. With the promise of chauffeurs, greeters and a wheelchair every step of the way, I decided that this was my opportunity to go on a trip while practicing minimal exertion. I decided that I would float through the weekend while constantly asking for help. To the extent that it was possible, that’s pretty much what I did.
But you should have seen me in the room jamming with Chris Martin. For about 20 minutes, I was a musician on fire. There I was doing the thing that I love to do the most. I was connecting with another musician through music. When that musician is someone like Chris Martin, I assure you, the adrenaline will kick in just long enough for the jam to happen. In that moment of connection, I put the reality of the potential consequences on the back burner. With this damn illness, I’ve gotten used to paying the price later.
It’s been a rough couple weeks. I’ve been paying the price. To be honest, I’m scared. In the past, to some extent, I’ve always come back from crashes to reach some more manageable state of being, but there’s no guarantee. ME/CFS is brutal and doesn’t really care what I want. Currently, my body feels stuck in a pretty awful state of new normal. There’s been little change in the last 14 days. I’m living 15 minutes at a time. I rest for 15, then I write my Substack for 15. I rest for 15, then I make a call for 15. I rest for 15, then I eat for 15. I rest for 15 and then I cry for 15. Right now, I’m crying.
Thank you so much for being here. Having these stories to write every week helps give me some courage and some purpose to face the day living in bed. Thank you for all your feedback and thank you in advance for sharing today’s post with one friend. I’m asking this for two reasons. One is to satisfy my insatiable need for more subscribers and two is help spread awareness of the #millionsmissing who don’t even have the strength to write a single sentence or speak a sentence to get the world’s attention.
Thank you for reading Living in a Body. This post is public so feel free to share it.
Thank you. Have a good Saturday. I appreciate you.
Both: Put your head out the window. See my drivers roll.
Wallace: 686… they made up all but 5 minutes.
Casey: Alright… looks like we’re gonna pull in right on time
Wallace: 690
Casey: Almost Home
Wallace: People said Casey couldn’t run, but I’ll tell you what Casey done.
Casey: We left Memphis at a quarter to 9. We got to Vaughan Mississippi right on time.
Casey: Got within a mile of the place,
Wallace: a big headlight stared him right in the face. Shout to the firemen,
Casey: Jump for your life. Give my love to my children, say goodbye to my wife.
Wallace: Casey said just before he died,
Casey: “there’s still more railroad that I’d like to ride”
Wallace: The good lord whispered, this’ll never be.
Both: The Illinois Central be the death of me.
Wallace: The engine plowed into the back of a boxcar that was stopped off to the side of the tracks.
Casey: The accident report’s still around. You can look it up if you want to.
Wallace: The fact is, nobody much cares about what really happened that night. What they remember is that little song I wrote. Casey Jones was a friend of mine. And I want folks to remember him for the good things he done rather than all the rest. And I don’t think there’s a one of us here that wouldn’t want the same.
Follow me on Instagram. (124k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’d love your feedback on something. This week, for the first time, I’m posting the audio without a musical background. Do you prefer to listen to me read with musical background or without musical background. I’m just wondering if you find the music at all distracting. Please let me know in the comments! To hear me narrate the story now, please click the play button. (9 minute listen)
Coldplay Chicago
Somehow, last weekend, the stars aligned in a way that put me on a couch in a tapestry covered music room giving a lesson in how to play the khaen to Chris Martin, the lead singer of Coldplay. Even better yet, my daughter, Hallie was there to witness the whole thing. Just so you know, with 56 Million followers on Spotify, Coldplay is the biggest music act that there is right now. Chris Martin, though he would never admit it, is the rock king behind it all. Coldplay is an enormous enterprise. I think it might qualify as a city or even a kingdom. In planes, trucks, buses and limos, they move the whole operation from stadium to stadium to put on the most extravagant, environmentally conscious mega-concert of any modern day music act. Somehow, last weekend, Hallie Walker and I found our way into the inner sanctum of the city and I gotta say… It was amazing!
Here I’ll let Hallie go first. She writes:
As a girl who gets excited about staying at the Holiday Inn Express, staying at The Peninsula was kind of a dream. The bed was an actual cloud. The sheets? Butter. I’ve lit’rally never slept on something so comfortable in my entire life. My IKEA mattress and bedding are just not gonna cut it when I get back home now that I’ve experienced The Peninsula bed. We were living in luxury, baby! But $177 for a basket of French fries and a mediocre steak was just not the vibe. Not to mention my bad judgement on the midnight room service for a single glass of orange juice…
Watching my dad jam with Chris Martin was undeniably the best part of the weekend. Hard to find the words for how special that moment was.
I’m not really a concert girly, unless it’s like Audra McDonald singing showtunes with an orchestra for 90 minutes. Standing for hours in crowds of people jumping around is just not my thing. But, I would SO be a concert girly if I got to experience every concert like we experienced Coldplay. They treated us like royalty, with a private backstage room at the venue, amazing food and box seats. And those box seats were magic. The show is a total spectacle and when you have that vantage point (not to mention in a temperature controlled room with comfy chairs, food, and sauvignon blanc) it’s a whole other thing. Everyone at the concert had a bracelet that lit up as a part of the synchronized light show for every single song. Whoever the lighting designer is needs a serious award.
It was a weekend I’ll always remember with my Daddy.
Next week, I’ll tell you the real story of what it was like living in this particular body through all the excitement of the weekend, but today, I just wanna share a few of the highlights.
What an awesome traveling companion Hallie was. She flew to Chicago from New York and I flew from Cleveland. We met up at the O’hare airport and began our once in a lifetime weekend. Hallie and I are both a little obsessed with the creative process. All weekend, she was busy creating vertical movies for TikTok and I was documenting the whole trip on Instagram stories. Every once in a while, we’d look up from our phones and be glad for each other’s company. We really soaked up the glamour of the weekend. Both of us enjoyed the bathrobes, the hot tub, the box seats, the chilled cucumber washcloths and we even had our own personal chauffeur. Satnam took us wherever we wanted to go and he had no trouble lifting my 50 lb wheelchair to put it in the back of the limo.
I left Kent with two khaens in my possession. (In case you don’t know, a khaen is a mouth organ from Laos that I play.) At home, I couldn’t decide which one sounded better, so I decided to bring both of them. On Saturday, we were scheduled to meet the band at four o’clock. That morning, it occurred to me that one of these cherished instruments would be an appropriate gift for Chris Martin. Believe me, it was very hard to let go of this D minor khaen, but considering how generous Chris Martin has been toward me, the gift seemed right-sized — a beautiful handmade khaen from Laos - the one thing that the musician who has everything doesn’t have.
Within minutes of meeting, Chris and I were sitting next to each other on a couch and I was teaching him to play his new mouth organ. It was truly one of the funnest moments of my life. He picked up on the instrument very quickly. Thanks to some of my good instruction, within moments after putting the instrument to his lips, we were making real music together. We jammed for just about 20 minutes before Chris had to excuse himself to do some promo, have a physical therapy session and jump into his ice bath before the big concert. What a life that guy lives! It was amazing to witness. Fortunately, Hallie got some good video footage of our lesson. You can watch it by clicking below:
I was in the spirit of giving, so I planned to give the other members of the band each a pair of banakulas on Sunday. In my imagination, I envisioned a Sunday afternoon hang out with Coldplay. We would sitting in a circle and I’d be offering relaxed instructions in how to play this African rhythm instrument. I even asked Lauren, our host for the weekend, if this vision might be possible. It turns out the band had a packed schedule for Sunday and Hallie and I would have to wait in the wings in case some extra time opened up. In the end, no extra time opened up but I was quite satisfied with a few minutes in the dining room with the drummer and the guitar player — each with a pair of banakulas in their hands. We were shaking, knocking, spinning and doing the banakula thing. Unfortunately, we missed the video opportunity on this one.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
One more highlight was the fact that I could see a Whole Foods store from my hotel window. I follow a very specific food plan and after we spent $177 dollars for room service on Friday night, I realized that this was not gonna be sustainable. Whole Foods was a perfect 10 minute wheelchair ride from my hotel room. It was the ideal circumstances to satisfy my breakfast and lunch needs. Dinner was provided by Coldplay’s personal chef who was more than happy to oblige my dietary restrictions. Here’s a video of a quick trip to Whole Foods for lunch.
Overall, it was an incredible weekend. Next week, I hope to tell you the not so glamorous side of the story. It’s the part about living in this crazy body of mine. To close, I’ll say that I’m grateful for the connection I have with this remarkable human being, Chris Martin. Though it wasn’t easy, I’m grateful that I had the strength to travel and that I got to spend that quality time with Hallie. I hope you’ll all stay tuned to see what happens next. Thank you so much for being here. Enjoy living in that body of yours. Have a great Saturday.
Follow me on Instagram. (124k followers)
Hang out with me on TikTok. (1.7M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is “Living in a Body.” Welcome! To hear me narrate the story with original music, please click the play button. (12 minute listen) Also, please help this community grow by sharing this episode with one friend. Thank you! Hal
Chronic Joy
Sure, I love crying and sure, the life that I once knew has been decimated by the onset of severe chronic illness. But actually, I’m a really fun guy. Even more than crying, I love having fun. I mean heck, I was voted best personality in my high school graduating class. My dad once called me out in frustration. He said, “Son… do you ever stop joking?” I love laughing. I love teasing. I love running and skipping and dancing. I love hacky sack and frisbee and the ancient Chinese game of Go. Once, I even marketed myself to schools all over Ohio as an “Artist of Play.” So when I asked myself to write a piece called “Chronic Joy,” it sort of made sense.
But hold on a minute, Hal. Who are you kidding here? With the extent of illness, disappointment, grief, and regret that’s been living in my body lately, how do you expect me to write a piece called “Chronic Joy.” I mean, c’mon. Is chronic joy even a thing? Does it even exist? I looked up the definition of “chronic” and there was no mention of joy. It’s all about illness and suffering and bad habits. To be honest, I don’t know if I’ve got it in me. But you know what… I’m willing to give it a try. I mean, what do I have to lose? I’m willing to consider that maybe this is all joy and I’ve just been labeling it wrong. Alright here we go…
Hi. My name’s Hal and I’m suffering from chronic joy. It never stops. Everyday I wake up to it and when I go to bed, it’s still there. All day long it’s running through my whole body. Every time I ride that lift up the stairs, there it is — joy. Every time I hop on that wheelchair or crawl under the covers, it’s inside of me. It’s like my brain is in a constant state of blooming flowers. Sometimes the joy is so severe that I lie in my bed and I weep and then I laugh and then I weep some more and then I laugh some more. By the way, if you ever need a little extra joy, come take some of mine. I’ve got a supply that’s more than enough for a lifetime. It’s joy, it’s chronic and I’m happy to share it with you. I’m living with chronic joy.
When I was directing the tone chime choir at the UU Church of Kent. I wrote a piece of music called “Chronic Joy.” It’s playing in the background right now. The word chronic has been in my life for many, many years. In 1992, I woke up one day and I entered the world of chronic illness. For many years, I tried to medicate the variety of discomforts with all kinds of who knows what, but nothing really ever worked for me. On the other side of immediate relief, I usually found various forms of craving, dissatisfaction and loneliness. It turns out that I had a big empty hole inside of me that only joy could fill. I wrote the piece of music, “Chronic Joy” to remind myself that one moment at a time, joy is always an option.
In 2014, I was going through one of my painful break-ups when a friend gave me some very useful wisdom on the telephone. He said, “Just remember this. There is no problem. The only problem is your thinking.” This has stuck with me for years. To this day, I want to live my life by these words. There is no problem. The only problem is my thinking. That same friend would always suggest that the solution is to stop thinking and to smile — not just a little smile on the outside but a big smile — on the inside. He suggested that the only proper use of thinking is gratitude. For a self-centered, fearful guy with chronic illness like me, that’s not easy, but I think my friend is right.
Two weeks ago, I was writhing in my bed from weakness and illness. After having survived months of severe ME/CFS, I was once again using a timer to get through the day 12 minutes at a time. In agony, I was asking friends and relatives on the phone to encourage me to survive just the next 12 minutes. The discomfort was unrelenting and my brain kept telling me that it was gonna be like this forever.
It turns out that it didn’t last forever. Two weeks later, for whatever reason, I’ve been strong enough to clean my room, to do some work outside and to create some music. I even rode my scooter to Ace Hardware and then I raked and planted my garden. For whatever reason, the last few days have been the best days in months. Compared to the illness of last Fall, I’ve got to remember that these better days are a bit of a miracle. Thank goodness for better days.
Unfortunately though, there’s one thing I know for sure. ME/CFS is ruthless and unpredictable. It doesn’t care what my plans are. I’m grateful that this week I got to fulfill some of my plans. I planted lettuce, beets, sunflowers, chard and tomatoes and I enjoyed it. I don’t know what tomorrow’s gonna bring as a result of what I did today, but I think I’ll choose chronic joy. Wanna join me? Together, let’s seek out the glimmers of joy in this day.
Earlier this year, I came up with an appropriate nickname for ME/CFS. If you’ve been listening to this podcast, you’ve probably heard it before. You probably know how proud I am that I came up with it. I think it accurately illustrates the illness and it actually makes the name much easier to say. I encourage you to give it a try — “Myalgic-ensephalo-fn-myelitis.” (Also known as “*chronic-fk you-fatigue syndrome.*”) As you can probably tell, this moniker points to the hatred I feel toward this illness. I’m angry for what ME/CFS has stolen from me in the last year. It’s taken away so many of the things that I love.
But, to be honest, I’m not sure that this anger is useful in my overall healing process. In my 12-step program, the Meditation for the Day on May 12th speaks directly to this issue:
“Turn away all thoughts of doubt and fear and resentment. Never tolerate them if you can help it. Bar the windows and doors of your mind against them, as you would bar your home against a thief who would steal in to take away your treasures. What greater treasures can you have than faith and courage and love? All these are stolen from you by doubt and fear and resentment. Face each day with peace and hope.” - Twenty-Four Hours A Day
May 12 was international ME/CFS Awareness Day. The whole month of May is ME/CFS awareness month. To recognize the month, I’m gonna offer another alternative for the name. Considering how much suffering this illness causes, my alternative is a bit edgy. But I’m interested in trying it on for myself and saying it out loud a few times. I invite you to choose whichever nickname you prefer. Try this one: “Myalgic-ensephalo-joyful-myelitis” (also known as “chronic-full of joy-fatigue syndrome.”)
That last one makes me laugh out loud — “full of joy fatigue syndrome.” Now that’s some quality juxtaposition there. There’s something about these names that reminds me that this is my one life and that I get to choose how I think about it. I can either say “Fk You” or “Full of Joy.” Chronic joy. You wanna join me? We can say, “Thank goodness for all the gifts that (this particular unfortunate reality) has bestowed upon me.”
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
To be honest, I didn’t feel like joining in on ME/CFS Awareness Month. I’m so done with thinking about and talking about and living with this illness. But I read several Facebook posts from friends living with the disease and I realized that I need to do my part. The extent of suffering that I hear about from people that I care about is unbelievable. The lack of funding and the ignorance of the medical establishment is sickening. I have first hand experience of how at times ME/CFS has taken over my brain and has made me long to die. I have a friend that refers to the “endless pit of suffering of ME/CFS” and I know what’s she’s talking about. I sure hope that ME/CFS Awareness Month will call attention to the #millionsmissing. With all this suffering, somebody’s gotta do something about this.
I encourage you to donate today to Open Medicine Foundation for #MayMomentum. Let’s do our part to build awareness and accelerate research to end #MECFS.
I’ll be taking the week off next week. Hallie and I will be traveling to Chicago for the Coldplay concert. I can’t wait to tell you all about it. May your day be a blessing. May it be filled with health, love and peace. Whether it’s actually a thing or not, may you always suffer from chronic joy. Thank you for being here. I appreciate you. ❤️ Hal
Here’s a fitting TikTok video for you to enjoy:
Follow me on Instagram. (122k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal and this is “Living in a Body.” Welcome! To hear me narrate the story with music, please click the play button. (9 minute listen) Also, would you do me one more favor? Please share this episode with one friend. Thank you! Hal
Black Gold
In my household, throwing an egg shell into the trash is considered a crime. Back when Hallie lived here, every once in a while, I’d peek into the can and there it would be — an egg shell, a banana peel or an apple core — sittin’ right there on top of the trash. I’d shout up the stairs in my most dad voice. I’d say, “Hallie! Get down here. What the heck is this? What were you thinking? C’mon Hallie, you know better than this.”
You see, we have a compost pile. My daughter is the third generation of a composting family. All year long, we collect food scraps in the kitchen and then we carry ‘em to the back corner of the yard where we bury them under the leaves. In the world of composting, cucumber peels, cooked quinoa that’s gone bad, little scraps of meat, moldy cheese, the skins of broccoli stalks, rotting carrots from the bottom of the fridge and egg shells are worth gold. In a visceral and almost ancestral way, seeing quality composting material on top of the trash just feels wrong.
All summer long, we dump grass clippings from the lawn mower onto the pile. And then in the fall, we rake leaves onto a big tarp and drag them to the back to create a mammoth pile of compost potential way back there. The whole back corner of the yard becomes the compost pile. All winter long, as the freeze slows the decomposition process, we offer the food that didn’t get eaten as a kind of sacrifice to the pile. I never feel bad about wasting food ‘cause I always know exactly where it’s going — to the compost pile.
In the Spring, in spite of having organic material added to it all winter long, the massive pile emerges from the cold considerably smaller. At the end of March, one pitchfork full at a time, I like to condense the pile into a manageable shape right next to the big pine tree. It’s there next to the pine tree that the miracle process of death turning into life continues.
There have been times when the daily pilgrimage to the compost pile has given me a sense of purpose — me and my bucket of scraps, trudging through the snow or the rain, participating in the great unfolding. When I return to the kitchen with an empty bucket, I feel like I’ve accomplished something worthwhile. It doesn’t always feel like a pilgrimage, but it never feels like a chore. With just this little bit of effort, year after year, the prize eventually comes. The prize is some of the finest compost in Northeastern Ohio. My mom and I call it “Black Gold.”
This brings us to last weekend. A couple rounds of friends came over to chop down the rye grass, spade the soil and move shovels full of good dirt from the bottom of the compost pile over to the vegetable garden. This black gold I’m talkin’ about is a real thing of beauty. It’s dark, rich and full of vibrant life. It’s interesting. I’ve been adding composted soil to my garden for nearly 20 years and the soil level has never risen. My sense is that hundreds and even thousands of pounds of organic material eventually melts down to just handfuls of the blackest gold a vegetable gardener could ever hope for.
A big part of the quality of the soil is because of the worms. It happens right around the middle of June. I turn the pitchfork and there they are -- earthworms. Within no time, those few worms become 20 or 50 and then every turn of the pile displays even a hundred big, juicy worms, squirming for their lives, trying to get back into the warmth of the pile. Now, if it were maggots or flies or ants, it would be gross, but because it’s worms, it’s a beautiful site. Worms in my compost pile are a sign of the good health of the pile. No matter what challenges are going on in my little world, I can turn a forkfull of leaves and find enough worms to know that all is right with the universe.
Composting is a slow process and it requires patience. You can’t really see it happening. But when the worms show up, things start moving along more quickly. I can put a bucket full of food scraps in the pile and within a couple days there is no sign of that food. It’s all been eaten and turned into high quality worm poop. A few times, I’ve gone even down to Starbucks to pick up some big bags of used coffee grounds to add to the pile. And the worms just keep eating. I imagine those worms get pretty buzzed on those hot summer Starbucks days.
About once a week, just to make sure those little squirmers don’t get too comfortable, I turn the compost with a pitchfork. With every turn of the rotting leaves, I can tell that the inside of the pile has turned into a hot oven. Steam rises up and fills the air with the intense smell of decomposition and transformation. As the summer passes, the pile gets cooked away. By the time fall arrives, it’s been cooked down to a sweet mound of living dirt sitting by the pine tree. The back corner of the yard is ready to go again with a new season of leaves. Sometimes I wonder where the worms go in the winter, but wherever they do go, the whole family keeps coming back year after year to my compost pile.
Tending a compost pile is one of the right actions of my life. This right action connects me to something bigger than myself. It puts me in tune with that part of myself that dwells in beauty, that knows patience and embraces the miracle of death equally as the miracle of life. I’m grateful to my dad who raised me in a composting family.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
So Hallie, I can’t wait for the next time you come home, but don’t forget. Our scraps stay local. Apple peels don’t go in the trash. Old food doesn’t go down the disposal. We offer these scraps an opportunity for another life — to move through the great body of the earthworm, to get cooked in the deep warmth of the compost pile and to go on to birth a sugar snap pea, some rainbow chard or a sunflower reaching for the sky.
Thank you for reading. Big thanks for listening. Sometimes I wonder how many more of these I’ve got in me, but hopefully I’ll be back next week. Have a great Saturday! Hal
Follow me on Instagram. (115k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (58k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I’m still living in a body and this is still “Living in a Body.” Welcome! To hear me narrate the story with music and to support my work, please click the play button. (11 minute listen) Thank you for being here. I appreciate you. Hal
Who the Heck is Jamie?!
(Press Play)
My mom refers to herself as a seeker. I guess that’s what I am, too. At the age of 56, you’d hope that I would’ve done a little more finding by now, but here I am — seeking, yearning, doubting, avoiding, questioning, struggling and longing. I can’t remember exactly how she said it, but a friend of mine recently suggested that God is in the longing. I wish I knew what she meant by that. I guess I could ask her.
Several years ago, I dropped off my Prius at the Main Street Auto Center in Kent for some repairs. A few days later, as expected, I picked up the car, paid the bill and drove away. When I turned on the car stereo, I was greeted with music that I’d never heard before. In my CD player was a mysterious homemade CD with nothing but some handwritten text on it — “Jamie* 4-21-2018.” Within minutes of hearing the music, I started crying. Driving down the road with the stereo turned up, filled with emotion, tears running down my face, I was bawling.
Even though my dad was a Presbyterian minister, we didn’t talk about God much in the house. When it came to faith, we were a cynical bunch. My dad said a prayer before every family dinner but never before breakfast or lunch. We never prayed in restaurants and as a family, we were generally opposed to any inkling of public piety. We were raised to question. The ultimate goal in life was to be a thinker. My dad’s brain was so full of books and thinking that somewhere along the way, I decided to leave the historical theologizing to him and I, instead, went desperately in search of a girlfriend. Church was my duty and my obligation. Every Sunday morning, I wore my Sunday best, but my time in the pew was spent dreaming about pinball — and girlfriends. (see Stolen Quarters)
The music I heard on that CD broke through the analytical part of my brain. The trance pop melodies sung by soulful female voices shook my doubt and made me grieve for a simpler faith. The power drums and the huge bass broke me down from my high tower of intellect. Though my resistance to Christian praise music is deep rooted, these songs were calling me to the altar. Track after track revealed the pain of my having spent years trying to figure out who God is. The combination of the song lyrics and the live congregational singing brought forth my longing for religious community. As I drove, I put my heart and my hands in the air in an act of surrender. I remember driving along Wyoga Lake Rd. in Stow in tears and being on the verge of a religious experience — desperately wanting to let go but still holding on. I kept that CD in my car for six weeks. Every time I pressed play, I would almost instantly start weeping.
“In the glory of your presence,
I find rest for my soul.
In the depths of your Love,
I find peace — makes me whole.
I love, I love, I love your presence 2x
I love, I love, I love you, Jesus.”
“I Love Your Presence” by Darren and Jessie Clarke
In my twelve step program, we often talk about doing the “next right action.” At some point, it occurred to me that the next right action was to return to the Main Street Auto Center and give the disc back to the rightful owner. After I made my own copy, I approached the shop with the Jamie CD in hand. I remember feeling shy and a little bit embarrassed. I had a feeling that the return of this CD would be a bit outside of the norm for these grease covered mechanics. But I knew I was doing the right thing.
I walked in, waited in line and then explained what happened. I apologized that it had taken so long for me to return. As I handed the CD to the shop owner, he made it very clear, “Our mechanics would never put a CD in the stereo of a customer’s car. That’s against our policy. It’s not our CD. Our guys wouldn’t do that.” He put the disc back in my hand and I returned to my car dumbfounded. “What? How could this be?” Suddenly, my understanding of the world turned upside down. “Then how the heck did this CD get in my car? Who put it there? This is crazy!” To this day, I have no idea where that CD came from.
Months later, I made one more attempt to figure it out. I saw Hallie’s high school friend Jamie walking in downtown Kent. We hadn’t really spoken in years, but I stopped her on the street and asked her to sit down for the whole story. She laughed and thanked me for asking, but she assured me that the Jamie CD was not hers. I’m still bewildered.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
When I started writing this post, I went in search of the disc. I’m glad to say that I found it still living in the CD player of my car. (I rarely drive these days.) With the help of Spotify and Shazam, I’ve learned that the songs on the CD are mostly tracks from a live worship album called “Here is Love.” The singers, Jenn Johnson, Kim Walker-Smith and Leah Mari are part of the worship team at Bethel Church in Redding, California. This morning, as I traveled a slow wheelchair journey back and forth from my kitchen to the grill on my front porch, I listened to the songs on Spotify. They gave me some comfort. As I soaked in the music, I felt a kind of sad, quiet contentment. It was as though I was making peace with the grief and the loss in my body and in my home. My thinking slowed way down and I teared up a couple times.
Recently, more than ever, I’ve been brought to me knees. Rendered ever more helpless, it seems that the spiritual solution is gonna my best option. Over and over again, I learn that the things I’ve tried in the past don’t solve the problem. 20 million views on a TikTok video won’t bring me closer to God. Acquiring more musical instruments won't offer me peace and contentment. And finding a new girlfriend isn’t gonna fix my life problem. They say it’s an inside job and no matter the circumstances, one day at a time, right action leads to right thinking which leads to…. who knows what — the great unfolding?
I’m grateful to be on this journey — this bonus life of mine. Often, I wish that the universe would lighten up a little bit on me, but I know it’s my job to lighten up. I’m interested in the idea of holding this illness lightly and just going along for the ride. The gifts are so abundant and they just keep coming. I mean that CD, for instance… where the heck did that thing come from? The whole story reminds me to keep my eyes wide open for the miracle. You never know where it’s gonna show up.
My friend said that God is in the longing. And there’s no doubt that I’m longing. I’m longing to take a walk down by the river. I’m longing for community. I’m longing for better health. I’m longing for healing in all my relations. I’m longing for peace to breathe through my whole body. I’m longing for freedom from my old ways of thinking. I’m longing to trust the unfolding and to love what is.
Thank you for being here. Thank you for reading and for listening. I appreciate you. In fact, I am you. Thank you, highest power, for all the gifts of this moment. I love you.
“If you want it, come and get it… for crying out loud.
This love that he has given to you was never in doubt.
Let go of your heart. Let go of your head and feel it now.”
- “I Love Your Presence”by Darren and Jessie Clarke
Follow me on Instagram. (101k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I live in a body and this is “Living in a Body.” Welcome! To hear me narrate the story with original music, click the play button. (12 minute listen) Thank you for being here. I appreciate you. Hal
The Helpers
My dad used to always say that the antidote for feeling down and depressed is to visit the “sick and the suffering.” I never got to ask him, “But Dad, what if you are the sick and the suffering? Then what do you do?!” My dad was right though. One of the best ways for me to get out of my own pain is to help somebody else with theirs.
When I was in Austin, My youngest sister Caroline walked into my room and broke into tears. She shared with me how difficult it is being the youngest in the family. She’s got two older sisters that are incredibly wise and always seem to come up with the right answer for any of life’s challenges. Caroline was wishing that maybe once she could be the wise one, maybe for once she could be the one with the right answer.
As I listened to my sister share her pain, I automatically fell into the mode of being the helper. For a few moments, I was relieved of thinking about my own discomfort. I welcomed the role of the supportive brother, the good listener and the caring hugger. I let Caroline know how much I appreciated her for sharing herself with me in this way. For a few moments, I was the helper and I was healed. Thanks, KK.
I’ve gotten pretty good at asking for help. The fact is that I need help. I’m living with moderately severe ME/CFS. It feels very severe to me, but then I read posts from a guy like Whitney Dafoe who is severe severe and I correct the modifier. These days, I’m not strong enough to shop for myself, prepare my own meals, clean the house, mow the lawn or do my own laundry. So I ask for help a lot.
When the crashes started in 2021, I picked up the phone and started calling my friends. Without even me having to ask, my friends started offering to help. It was remarkable the way people showed up for me. One Sunday morning in August, I called my old friend David Ford to let him know what was going on. Even though we’d barely spoken in the 33 years since college, by the end of the call, David was planning a trip to Kent from his home in North Carolina. On the first night here, as I experienced one of those 2021 crashes, David lay next to me in my bed carrying me through the sleepless night of terrifying symptoms. During that week, he cleaned out the basement, helped set up the house for my newfound disability and planted an amazing winter crop of rye in my vegetable garden.
The members and friends of the UU church of Kent also jumped right in to help. For several months in the Fall, we used a “Meal Train” site to arrange for three visitors a day to assist me with each meal. Katie, Becky, Marion, Dave, Diane, Trish, Don, David, Mike, Vanessa, Kathy, Kevin, Mike, Oviya, Laurie, Ed, Jeff and a few others got to know their way around my kitchen. Each found their own unique way to plate my food and bring it to my bed.
Kim seemed not to bat an eye through the whole nightmare. It was remarkable how she stayed grounded in reality and stood by me to face these challenges in a deeply calm, caring and practical manner. Without question, Kim was a loving force in my life and she was there for me through every twisting corner of this illness.
With the help of Zoom, my sisters became my support team from afar. At the times when I questioned whether I could survive to the new year, they listened and offered me so much sisterly love and care. They took turns traveling to Ohio to sit by my bedside, care for me and coach me through the rough times.
No daughter wants to see their dad struggle with a severe chronic illness, but Hallie has shown up for this with real courage and intelligence. She’s a proponent of the phrase, “this too shall pass, daddy.” In her original song addressing the illness, she coined the phrase “Dear ME/CFS… Get the Fk out!” Hallie has shown impressive boundaries and a good instinct for taking care of herself when confronted with the emotional challenges of this illness. The fact Hallie exists so well in the world is one of the great sources of hope in my life.
My college roommates, Stu and Jerry came through for me in ways I never could’ve imagined. They joined forces with David Ford to launch a wildly successful GoFundMe and they gathered 40 musicians to play a virtual benefit concert for me and to raise awareness of ME/CFS. Surrounded by loved ones, watching “A Love Song for Hal” on Jan 7 was one of the most profound and touching experiences of my life.
Even Chris Martin of Coldplay showed up for me. It turns out that Chris is a mega-star of the super kind, down-to-earth variety. In our texts, he refers to me as “dear Hal.” Chris and I met on Instagram. At a particularly rough moment last Fall, I reached out with a message to let him know what was going on with my health. Within minutes, he replied, “I’ll call you in 15.” During our conversation he asked if there was anything that he could do to help and it occurred to me to be honest, “Well… some friends of mine are putting on a benefit concert for me in January. Would you consider playing at the concert?” His response blew me away a little bit, “Dear Hal, of course, I’ll play.” (Watch Chris Martin’s performance of the classic “As Time Goes By” here. )
When keeping track of all the helpers became too much for me to handle, I called my friend Julie to be the “care coordinator.” It’s worked out really well. Lately, she’s been coming to my house twice a week to help with meals. Julie has a special gift for weighing and measuring salads.
I’m sorry to say that about 2 weeks ago my symptoms took a turn for the worse . The last two weeks have been a couple of the most challenging weeks of my life. This onset of intensified symptoms inspired and knowing that Julie was going out of town for a week inspired me to make a Facebook post asking for help. Now I have a whole new list of phone numbers of people who are willing to do dishes, clean the cat litter or sit quietly with me. Maxine was the first to step up. For the last couple days, She’s been a delightful bringer of the lunches.
Over the years, I’ve noticed that people rarely ask me for help. Sometimes I wonder if I give off some kind of vibe that I’m too busy or too self-absorbed. I like to imagine the healthy version of myself out in the world being a great helper — volunteering to shovel snow, weed gardens or pick up trash along the river. I think about how much I’d love to deliver groceries to people who are housebound or bedridden. Of course, when I was stronger, I didn’t do any of those kinds of things. I was too busy building the Hal Walker Enterprise. (See No More Striving) But I’ve been on this side of the help long enough now hopefully to have learned my lesson. I want to be of service. I know what a joy it is to be the helper.
I have a limited capacity for helping, I can’t mow your lawn or clear out your garage, but maybe I could listen for a few minutes. If you ever have a grammar related problem, I’m your guy. Three years of high school English with Mr. Pollack set me up well for a lifetime of avoiding passive voice and dangling modifiers. Seriously, if help is ever needed by you... consider asking. :)
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
The help that I’ve received in the last year has been stunning. I’m sorry that I can’t name every one of you here. Thank you, helpers. People have shown up for me in ways that were unimaginable before all this craziness began. Again, thank you, helpers. Thank you for the love and the care that you have shown me. Thank you for helping to get me through the most challenging year of my life. I’ll never forget it.
I often think of the people living with this illness that don’t have the kind of support that I have. ME/CFS can be so debilitating, so maddening and so isolating. It can turn a life upside-down overnight. I pray that somehow my own story can help another who’s living with this mystery illness. I’d like to end this post today with a moment to remember the #millionsmissing — the ones who are prisoners in their beds and suffering in silence.
Thank you so much for reading. Thank you for listening. Let’s just pause for a moment.
Follow me on Instagram. (82k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (53k subscribers)
I haven’t figured out Twitter yet, but I’m there. (298 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I live in a body and this is “Living in a Body.” If you live in a body too, I’d like to welcome you here. To hear me narrate the story with original harp music, click the play button. (6 minute listen) Thank you for your attention. I appreciate you. Hal
Hal the Imaginary Harpist
(Press Play Above)
I’ve made a few questionable purchases in my life.
Every once in a while, the thought that I absolutely must have something gets stuck in my head. As if my brain gets hijacked, I end up doing whatever needs to be done to get the item into my possession. On several occasions, this has been my downfall. Like that harp, for instance.
I was walking down South Water Street past Woodsy’s Music when I saw a very attractive black harp in the window. I hadn’t planned on buying a harp that day, but I was struck with a sudden inspiration. In my Friday afternoon imagination, I suddenly became a harpist. I imagined myself practicing the harp for 20 minutes a day, writing songs with the harp, performing on the harp in schools, and playing the harp at church on Sunday mornings. I mean, c’mon, I’m Hal Walker. Of course, I play the harp. I pictured this harp opening up a whole new dimension of myself as a musician. In that moment on the sidewalk in Kent, buying that harp made perfect sense. Not only would I declare it as a professional expense, but my house would forever vibrate with the angelic sounds of the harp.
To resist the immediacy of the temptation, I probably took a walk around the block or maybe I went home for a few hours, but the idea of owning that harp was already lodged in my brain. That instrument was gonna fix some part of my life problem and there’s no way I was gonna let it go. An hour, a day or a week later, I walked into Woodsy’s and proudly announced that I would like to purchase the harp that’s in the window. I laid down my credit card and I officially became a new harp owner.
The harp that I’m referring to has been sitting in my attic since I bought it in 2004. I’ve played it several times. In fact, if I can get it in tune, I hope to play it today to accompany this episode of “Living in a Body.” I think I played it at church one time. I remember once I bought a whole set of instruction books with the idea that those books would solve my unplayed harp problem. But no... it didn’t work. Those books are on the shelf now, too. That harp has joined the sad list of unused items in my attic that I hope to sell someday on Facebook Marketplace. Fortunately (or unfortunately), I have a big attic. Anyone want a harp?
The list of poor purchases goes on and on, but next week I’d like to tell you about a good purchase — possibly one of the best purchases of my life. In the next episode, I’d like to introduce you to my float tank. Also known as a sensory deprivation tank, its a large coffin-like box that holds 10 inches of skin temperature epsom salt solution. Accessible from the upstairs bathroom, the float tank is a dark, silent, womb-like retreat. I go there to float when I need deep rest, comfort or inspiration.
It’s Tuesday now, but when you read this, I’ll be in Austin, Texas getting ready to see my daughter perform in the Rocky Horror Picture Show at the Zach Theatre. I can’t wait to see Hallie perform, to spend time with my old buddy JP and to see my sisters, my niece, my nephews and my brother-in-law. The whole family will be spending the weekend in an airbnb just a few blocks away from the theatre. Believe it or not, I also get to see my new sponsor while I’m there. He lives in Austin.
I’m planning on leaving the harp at home, but I think I’ll carry that float tank with me in my mind. Whenever I feel overwhelmed with illness or overstimulated with the outside world, I’ll imagine the warmth, the dark and the quiet peace that I experience in that tank. I’ll close my eyes, put a little smile on my face come back to reality and then imagine some harp music playing in the background.
Wish me luck everybody. This is gonna be a big journey. Have a great Saturday. Enjoy. As always, thank you for so much for being here. I appreciate you. Hal
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (359 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I live in a body and this is “Living in a Body.” If you live in a body too, I’d like to welcome you here. To hear me narrate the story, click the play button. (14 minute listen) Thank you for your attention. I appreciate you. Hal
Two Weeks Off TikTok
I keep checking my phone in search of something and there’s nothing there.
Two weeks ago, I hit an emotional bottom. I’m going through a very painful break up caused by my own actions and then on top of that, without notice, my part-time caretaker announced that she quit. I’ve been living with moderately severe chronic illness and suddenly, I was alone in the house to fend for myself. The brevity of my caretaker’s email and the stark reality of my need for a caretaker really shook me. All those old fears of abandonment reared their ugly heads and I freaked out a little bit. I made a few phone calls to arrange for help and then it was time to take a long, hot bath.
On that Friday night, I was alone in the house and I filled the bath before bed. I lit a heart-shaped candle on the countertop and I poured scented salts into the steaming water. Then I got real honest with myself,
“Something needs to change, Hal. The way you’re living isn’t working anymore.” - Hal
Inspired by the heat, the candle, the salt and the grief, I made a decision. I would dive fully back into my 12-step program and I would take two weeks off TikTok and Instagram. You may know that needing to come back to a 12-step program isn’t a laughing matter, but you may chuckle at my resolve around social media. (See Stolen Quarters) Here’s the back story:
For more than two years, TikTok and Instagram have played a major role in how I define myself. On TikTok, I’m Banakula — “the Hal Walker of Music.” At 56 years old, with 1.6 million followers, I’m a TikTok success story. Creating content on an app where 30-somethings are the “old” generation, I beat the odds on that platform. Since January 2020, these apps have played a significant role in my creative life, my professional life and my personal life. TikTok and Instagram have catapulted my music career into a whole new dimension. In the last two years, I’ve tapped those icons hundreds of times, I’ve created at least a thousand videos, I’ve read thousands of comments and I’ve received millions of likes. In the bathtub on that Friday night, I decided to put ‘em both down — for two weeks.
Now I keep checking my phone in search of something and there’s nothing there. No texts from my partner, no notifications from TikTok, no IG stories and no instant messages. It’s just a painfully slow trickle of new subscriber notifications from Substack and the daily game of Wordle that I share with my sisters in a group text.
2019 was a good year for me. I discovered the Samson Dubina Table Tennis Academy, I rebuilt some old benches at my church, I cut down the Norwegian (see Bringing Down the Norwegian) and I downloaded TikTok.
It all started one afternoon in May. I was giving an assembly at Sacred Heart Elementary School in Akron and during the question and answer time, a fifth grader stood up and asked, “Are you on TikTok?” I’d heard of this phenomenon, but really I knew nothing about it. I said, “No.” Then her response caught my attention. She said, “You should be.” After the assembly, a group of fifth graders gathered around me in a pre-pandemic cluster and we agreed that I would go home, download the app and record my first TikTok video. My new friends guaranteed me a few likes, comments and follows and I left the school that afternoon with high hopes for instant success.
“I’m off the deep end, watch as I dive in. I’ll never meet the ground.”
The fifth graders gave me those likes, comments and follows but the excitement died down pretty quickly. I set aside my big hopes for virality and I spent the next few months getting to know the “for you” page. The “for you” page on TikTok is the endless scroll of vertically oriented videos where the algorithm studies your preferences and TikTok takes over your brain. (see WSJ - TikTok Brain Explained) Every time I press the heart button or watch a video all the way through, “Big Sister” gets to know me just a little bit better. Over the next few months, swipe after swipe, I was lured into the most amazing talent show that has ever existed.
By the way, in case you didn’t know, talent shows are my specialty. It started at the Kent Presbyterian Church when the host of family talent night announced, “And Now 4th grader Hal Walker will perform Amazing Grace…on his hands.” Cupping my hands in the shape of a sweet potato, I blew into the space between my thumbs and created a beautiful cooing melody. Everyone in the audience was amazed and I went back to my seat looking forward to the next time. It turns out that I have a particular talent for performing amazing musical tricks that last for less than a minute. TikTok was the talent show that I’d been waiting for my whole life.
It wasn’t until January 1st of 2020 that I posted my second video. In under 15 seconds, I sang the ABC’s song through the twang of a jaw harp. Then on Jan. 7th, I sat down at my kitchen table and recorded a 15 second clip of me playing the banakulas and the harmonica simultaneously. By the end of the day, I was getting comments like this:
“Here before this blows up!” ~ “ceo of vibin” ~ “kinda fire though” ~ “protect this man at all costs!” ~ “this man deserves the hype” ~ “I talk for everyone when I say, WE WANT MORE!”
I was finally getting the attention that I have always craved. At 54 years old, I felt like I was in high school again and this time, I was the popular guy!
With this video, I was initiated into the world of going viral. I couldn’t believe the numbers that I was seeing. On Facebook, I’d get excited if a post got a hundred likes. This video was getting hundreds of likes every few minutes. I remember sharing with a friend in amazement that my video had been viewed 100,000 times since yesterday. I starting asking myself, “Am I TikTok famous?” Little did I know where this would all lead. In the month of December 2021 while I was living in the dark with severe ME/CFS, my TikTok videos were viewed 75 million times! The world-wide reach of TikTok is incomprehensible.
TikTok was smaller back before the pandemic. I felt a real sense of community on the app. I was meeting musicians from all around the world and I was inviting them to appear on my interview show, This Moment in Music. I dove into the collaboration potential on the app with gusto. I fell in love with the “duet” feature. My time on the “For You” page was spent seeking out musicians with whom I wanted to collaborate. As the world was shutting down with a global pandemic, I was waking up everyday with a fire to create. TikTok gave me an amazing platform to do that.
Over time though, something started to change. As more and more Hollywood stars and big name artists joined TikTok and as my following grew, I lost that feeling of community. My focus turned toward the numbers. I started to crave the dopamine hit I get when the red notification flag pops up in my inbox. But no matter how big the numbers were, they were never quite big enough. Lately, it’s been feeling kinda empty.
Today marks the end of my two weeks off TikTok. (and Instagram) To be honest, it’s been a pleasure. It’s such a relief not to have to think about creating something everyday. For the first time in two years, I’ve been making music in my home without even thinking about turning on the camera. Just the last night, I sat at the piano for an hour - alone in my house, no camera, no lighting, no notifications, no live streaming… just me and the music.
To tell you the truth, I’m not sure what I’m gonna do next. I could just let it all go. That seems crazy though. TikTok’s reach has given me some awesome earnings in a time when I haven’t been able to work. Also, I feel like I offer an important presence to my fanbase. (85% of which are young men between the ages of 16 and 24) I’m doing a service on TikTok and Instagram. I’m touching people’s lives, but at what cost. From experience I know that life in a 3x6 inch phone screen can get very small.
What I realize is that I need recovery. I need earth and sky and trees. I need connection. I need higher power. Maybe I’ll take another couple weeks off and keep talking about it with my sponsor. Or I’ll try to find some weighed and measured approach to the whole thing. I’ll be sure to let you know what happens.
In the meantime, please share “Living in a Body” with a friend so that I can get a few more notifications in my inbox. :) On Substack, I only get about 3 or 4 new subscribers every week, but somehow it’s more exciting than the 100’s I get every day on TikTok. Thank you for being here. Thank you for subscribing and for reading all the way to the end. Let’s keep it small and intimate and honest over here on this side of the internet. I hope you have a great Saturday. Keep loving that body of yours. Hal
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (359 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. It’s been one more week of living in a body and this is “Living in a Body.” My dad (no longer living) “shares the microphone” with me today. Please click the play button to hear Rev. Harold Walker Jr. and me narrate with original music. (15 min) Thank you so much ~ Hal
This week’s episode is a little different. I wrote this piece many years ago for a Sunday Service at the Unitarian-Universalist Church in Kent. In 2013, I had the opportunity to co-lead the service with my dad at the Mt. Vernon Unitarian Church in Virginia. After my traumatic experience in the ocean of Kauai, my lungs were too weak to do much speaking, so my dad filled in on the spoken parts of the service. It was a wonderful father/son road trip that I’ll never forget. To get us started, I’ll ask you: where does music begin? (Feel free to reply in the comments)
The Place Where Music Begins
Music Begins in the Silence
“Silence — that unattainable quiet that lives within us and all around us. We approach it more and more closely and we feel its pull, but our experience is limited to the longing -- a hidden longing for the mystery that silence represents. Maybe willing ourselves toward silence is the ultimate practice. We could do a swan dive from it and enter the unknown directly without making a sound.” - excerpted from “The Listening Book,” by W.A Mathieu
Moving in the direction of silence, everything slows down. There’s no traffic, no chatter and no high-speed connection. There’s only the sun moving across the sky— painfully slow in this sped-up world.
I long for silence, but I run from silence — that un-nameable stillness where the single tone is born. In this birth, ancestors are present, language disappears and beauty becomes real.
So humble is this music -- traveling through time and space without a care in the world. Before her was silence, after her is silence. above and below her- silence.
Let’s dwell here in the silence, the place where music begins.
Music Begins in the Listening
“True listening confirms the sensual nature of the world . It’s a primal and basic act. Pure and simple, Listening makes us feel.” The wind strikes the bell, the waves travel through the air and the tiny bones in my ear canal come alive. Give it a try. Experience the sensation of sound in your ears. Feel how the whole world becomes a flicker inside your eardrums . Experience the wonder of a child hearing a bell for the very first time. (bell)
There’s a miracle in what you are hearing right now. Shh. Listen.
I’m an artist, a thinker, a father and a survivor, but I’m a novice when it comes to listening, that patient surrender that happens with presence. Today though, I’m gonna practice. With my whole self, l’ll welcome what is and be a witness to the vibrations — the sweep, the brush, the shake, the knock, the hush, the cry, the click, the ring and the pull.
Listening is connecting. Act as if your life depends upon the next sound that you hear. (Bell)
Let us dwell here in the listening, the place where music begins.
Music Begins in the Heart
Beneath the breath, before the thought and within the body lies the wounded, softened heart— the source of all musical expression. Behind the walls of shame and fear, we find a pulsating softness here.
Nurturing lover, one with the spirit and all that is living, the heart’s song is never-ending. She’s the mother, the beat and the blood. She’s subtle, constant and she is love. Shimmering is the heart — deep red, blue and black. Her signature is the rhythm. Her gift is the Love and the pain inside the melody. Through pulse and tears, the heart offers only glimpses of her beauty.
Let us dwell here in the heart, the place where music begins.
Music Begins in the Musical Instrument
What if a tree could choose? I’m sure she would choose to become a cello or a harp or a drum. Her sound would emerge from the roots. Her tone would be old and wise and the whole town would be listening.
What if the wind could sing? I’m sure they would sing a joyful tune. Bamboo flutes and pipes would be cheering everywhere, leading the whole town into happiness.
What if the steel could speak. I’m sure his words would cry blues, suffering and salvation. Bright would be the key and sharp would be the signature. He’d make the whole town cry.
And what if the buffalo had a choice. Would they choose the sacrifice? One life, their own life, traded for a song or a drum that will make the whole town dance. Music begins with this sacrifice. An instrument is built and then blessed with Life. Let’s acknowledge our connection to all that is.
Let’s dwell here in the place where music begins.
Music Begins in the Unfolding
Through music, we document our world, we share stories and we clarify our experience. It is this walk through life that grants us permission to sing and to dance and to play music. — left step, right step, breathe in, breathe out. The unfolding never stops.
I experience people and travel to places. I move through feelings and then I run from feelings. I commit myself to spiritual practice and then I surround myself with distractions. I experience moments of gratitude and then I refuse to be grateful. I lose myself. I find myself. I was born. I love. I work and I will die. And hopefully, somewhere along the line, I’ll discover that music that’s been hidden inside of me the whole time and I hadn’t even noticed it.
Today, I’m willing to notice. My arms are wide and my hands are open. My song will lead the way and the beat of my step will be my legacy.
Let’s walk together in the unfolding… the place where music begins.
Music Begins in the Community
Here’s an idea. Let’s circle up. Let’s hold hands and sing a song that everybody knows. “Clementine,” “You are my Sunshine” or “She’ll Be Comin’ Around the Mountain when she comes.” Let’s join our voices in sacred harmony — the young and the old, the basses, the altos, the sopranos and the “don’t even knows.”
Over and over, we’ll show up to the circle. We’ll move beyond the illusion of our separateness and we’ll sing. Our song will ring out beyond the confines of this sanctuary. We’ll blend our voices and our voices will become one voice. We’ll sing many languages and we’ll sing no language at all. In harmony, we’ll verify our need for each other. In unison, we will express our love for one another.
Let’s dwell here in community, the place where music begins.
Music begins in the Mystery
For many years, I’ve been a member of a church that doesn’t talk enough about God and a 12-step program that talks too much about God. I guess you could say that’s kind of how I roll. I have a hard time saying the word, but my primary interest is that which is beyond knowing. My only solution is surrender but just give me a few more followers on Substack. The one thing that I’m certain of is that I know nothing and most of my thinking is flawed but my poetry says that God is the source of all music. Spirit is the birthplace of all beauty — the word, the bow, the dance and the breath. Every song emerges from the Great Mystery. There is no beginning and there is no end to the music.
I’ve known failure and success, illusions of power and control and at times have found my own music to be false. But I believe that the True Whom is waiting within for my awakening. This music is not mine and it’s not yours. Her source is beyond knowing and herein lies the essential journey.
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Thank you so much for reading and for listening. Thanks to my dad for being such a hero in my life. I’m taking next week off to do a little bit of soul searching. Yay! I’ll see you in two weeks. Enjoy your Saturday. I’m glad you’re here. Hal
Follow me on Instagram. (85k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (359 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. It’s been another week of living in a body and this is “Living in a Body.” My dear mother is my guest writer today! Please click the play button to hear mom and me narrate the story with original music. (11 min) Thank you so much ~ Hal
A Green Beer Miracle
I love the creative process… especially when it works in my favor. Living with severe chronic illness, I’m not particularly fond of my current circumstances, but there’s a part of me that trusts the unfolding. Today’s episode is full of perfect timing and exquisite unfolding. It’s a story on top of a story of outlandish serendipity. (Tell your serendipity story here) My mom joins us as a guest writer today to tell her story. As her son, I get to get a big reminder that my mere existence is a true miracle. I mean, c’mon… what are the chances?!
I lost a couple subscribers last week and one of them commented, “I love Hal and pray for his recovery ❤️🩹. It’s just too sad.” I was grateful for the feedback and I realized that it was time to lighten things up a bit this week. :)
My first thought was that I would tell the story of how banakulas came into my life. It’s another awesome story of being in just the right place at just the right time. So, on Tuesday, I began my writing with another discussion of how timing has played such a significant role in the unfolding of my life. I started to tell the amazing story of how my mom and dad met in Chicago on St. Patrick’s Day and then I paused, “…WAIT, I should ask my mom to tell the story in her voice.” Then I looked at the calendar. “Today is Tuesday, Thursday is St. Patrick’s Day, Friday is my parents anniversary and on Saturday, my mom could be my guest writer for episode no. 11! The timing couldn’t be more perfect!” I reached out to my mom with a text and she agreed. Once again, at the last minute, my mom saves the day.
Janet Trostrud Walker is an artist, a mother, a grandmother and the 90 year old matriarch of the Walker Family. I’m so pleased to have her as a guest today on “Living in a Body” to tell us the story of the night that made my existence possible.
Today, I read several Facebook posts that disparaged one of my favorite holidays. They wrote, “Eradicate St. Patrick’s Day!” “I detest this holiday!” “It’s just a parade of drunks!” I, on the other hand, cherish this March day for it’s great significance in my life and the life of my family. Here’s my story:
63 years ago, I was working as a designer at Scott Foresman Publishing in Chicago. One fine St. Patrick’s Day evening, my co-worker Judy and I left a party on Lake Shore Drove to stroll down Rush Street in search of a bar serving green beer. As we passed Gus’s Pub, I nudged my friend and suggested that we go in and meet some of the advertising execs who hang out there. With all the partiers dressed in green, singing, dancing and drinking tall glasses of green beer, it looked like the right place to hang out for a bit before heading back to our Near North Side apartment.
We walked in and sat down at the only vacant booth in the bar. We didn’t have to wait long for two handsome guys to join us at the table. We exchanged names and made small talk for a few minutes, but I wasn’t getting my hopes up. I was guessing that they were probably married or divorced with kids. As we sat there chatting, a tall, sandy haired, tweed-coat-wearing gentleman walked by our booth and caught my eye. I was intrigued by his quiet and sensitive demeanor. Impulsively, I poked Paul (the guy next to me) and called his attention to this attractive man. For some unknown reason, Paul then called out to the stranger with a random name, “Hey, Harold! My friend wants you to join us in this booth!” Without hesitation, the tall, quiet man came over and sat right across from me. Incredibly, he informed us that his name was indeed, “Harold.” After we all expressed our disbelief of this coincidence, the others headed for the dance floor. Harold and I were left sitting alone at the table.
Harold soon moved to the seat next to me and we began the “what’s your line” dialogue. “Are you a teacher?… In advertising?… Do you live around here?” Then, out of the clear blue, he asked, “So… how old are you?” “Twenty one,” I lied. He responded that I was too young to be in a place like this and then he asked me to dance. After a couple dances, he mentioned what a shame it was that I was so young. In all my youthful charm, I inquired, “Well, how old should I be to satisfy you?” He hesitated and answered, “27?” I was startled and amazed that he had guessed my age exactly. I think he was quite pleased. Harold was 33 at the time and he certainly didn’t want to be robbing the cradle. I think that our compatible age was the first sign that we might be a good fit.
At about 3:30 in the morning, we finally left the bar and walked down Rush Street to my apartment on West Superior Street. As we walked, suave Harold suddenly took off ahead of us and began dancing a Scottish jig! We’d only known each other for a few hours, but that dance closed the deal for me. I was smitten with this guy.
We invited him up to our second floor apartment where he soon asked me on our first date. When I returned from my two week ski trip to Sun Valley, Idaho, Harold and I would go together to a Chicago Symphony Orchestra concert!
In a momentary lull in the conversation, Harold walked over to browse the books on our bookshelf. He chuckled with delight, “This book! I love it. ‘Tragic Sense of Life’ by Miguel de Unamuno! Whose book is this!?” The truth was that neither Judy nor I could claim the book. Neither of us had any idea how it had gotten onto the shelf! Though I never read it, I give partial credit to this book for the creation of our amazing lives together for almost 60 years.
When it was time to go home, our new acquaintance introduced himself as Harold Walker, Jr. He said that he was a pastor to Presbyterian students (UCM) at the University of Chicago. Apparently, he had been returning from a World Council of Churches meeting in Evanston when he took a detour to check out the green beer at Gus’s Pub. He also told me he was raised in Birmingham, Alabama.
Upon my return from skiing in Idaho, we enjoyed a few dates around Chicago. On one of the dates, Harold told me he would be traveling to Italy that summer for six weeks. He was going to see his newly-married brother, Bill, who was a Navy lawyer, stationed in Naples. I was so afraid that this amazing guy would slip away to Italy, forget about me and then we would never see each other again. However, when he asked me to take care of his car while he was gone and then when he actually gave me the keys to the car, I was at peace. I knew that our relationship was meant to be.
For many years, we laughed each time Harold reminded me that I was the first date that he had ever picked up in a bar. We’re convinced it was fate. A year and a day later on March 18, 1961, we were married at the United Lutheran church of Oak Park, Illinois.
Thank you for reading. Thank you for listening. Thanks mom for being such an awesome guest writer. Have a good Saturday and I hope you enjoy living in that body of yours. I’ll try to do the same. Let those stories unfold, alright? Bye. Hal
Do you like what I write? Please help this community grow by sharing this post with ONE person. Thank you!
Follow me on Instagram. (85k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (359 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
I have exciting news to share: You can now read Living in a Body in the new Substack app for iPhone.
With the app, you’ll have a dedicated Inbox for my Substack and any others you subscribe to. New posts will never get lost in your email filters, or stuck in spam. Longer posts will never cut-off by your email app. Comments and rich media will all work seamlessly. Overall, it’s a big upgrade to the reading experience.
The Substack app is currently available for iOS. If you don’t have an Apple device, you can join the Android waitlist here.
No More Striving
There I go striving again.
In the Fall of 2021, I had a very clear realization. When it wants, ME/CFS doesn’t allow for striving. For six weeks last fall, I lived in the dark and accomplished almost nothing. The shades were drawn, I wore silencing headphones and I asked all my visitors to speak in a whisper. I didn’t have the strength to sit up and create. In fear of more crashes, I wore blue-light glasses for the brief periods that I risked looking at my phone. I spent all day, every day monitoring my heartbeat and my breathing. (see I Love Crying) Even just the thought of writing a Facebook post would get my heart palpitating through my whole body for the rest of the afternoon. I hired a friend to sit at my bedside to make essential phone calls and send important emails. In hopes of protecting my volatile nervous system, I made vows to let go of all striving. I was desperate and willing to do anything to survive.
If you talked to me last fall, you might have heard me say something like this, “If I could do the last year and a half of my life over again, I would do more sitting under a tree, practicing quiet and calming my nerves.” If I had known what was ahead, I would have done a lot less striving and a lot more being.
But there I go striving again.
January came, the downward spiral finally leveled off and I got busy. This time it was in the form of my latest passion called Substack. “Living in a Body” is a 1200 word every Saturday publication in the form of a podcast. Then on Tuesdays, I alternate between gathering my life’s portfolio in “A Body of Work,” and inviting the community to participate in “What’s Your Story.” Some people write an occasional Facebook post when they get inspired, I prefer to create a community… or build an enterprise.
I’m a striver. I’ve been pushing and striving most of my adult life. When I’m speaking metaphorically, I refer to it as “building the Hal Walker enterprise.” In reality, it’s a constant urge to create and to produce. In the past, it’s felt like I’m running out of time and there just aren’t enough hours in the day or years in a life to master the tools and create everything that’s inside of me. Having floundered in addiction in my youth (see Stolen Quarters), I’ve often felt a sense of urgency to make up for lost time.
For many years, I’ve joked that I’m the most energetic guy you’ll ever meet who’s living with chronic fatigue syndrome. I mean, you shoulda seen me in front of a gymnasium full of 4th graders — the way my energy fed off the multitude of delighted eyes in the audience. You shoulda seen me in front of my choir — the way we were like a family pushing and carrying each other along. You shoulda seen how I prepped banakula supplies and how we’d make hundreds of pairs of the instrument in a two day residency at an elementary school. You shoulda seen how when the pandemic hit, within days, I was launching a three times a week live interview show called “This Moment in Music.” Because three times a week just wasn’t enough, I added a fourth — a Sunday sing-along complete with lyrics on the screen for your singing convenience. You shoulda seen me on the table tennis court in 2019 — living my lifelong dream of being an athlete. For 29 years of living with ME/CFS, I was always in search of a place to lie down somewhere. But when I needed it, my energy resources would fire up and I would come alive. I’m sorry to say my limitations today are far more severe.
I don’t think I’ve said it out loud here yet, but I hate this illness. Living in this body with so much passion to create is at times unbearable. Having experienced so much loss, I’m been grieving for months. After 26 years of being the music director at the UU Church of Kent, I’m surrendering my position to the church’s current interview process. And after 20 years as the choir director at our beloved Summer Institute, I’m passing the baton on to a new choir director this year. Most likely soon, I’ll be removing my name from the rosters of the Ohio arts organizations that have provided me with the best jobs a musician like me could ever have wished for. To add to the grief, I’m doubting whether I’ll be able to travel to Austin to see my daughter perform in her career lauching role in the Zach Theatre’s production of “The Rocky Horror Picture Show.”
On top of it all, I’ve made a bit of a mess in my life recently. I was dishonest, self-serving and uncaring. I’m sorry to say that I hurt people along the way and right now, I’m living with the painful consequences of my actions. On Wednesday, I called my mom over to my house and I cried in her arms for about 20 minutes. We cried together and it was good. It was the most connected I’ve felt with my mom in a while. I’m glad that I don’t have to face these life challenges alone. Thanks, Ma.
Sometimes, I’ve wondered if my posts in “Living in a Body” are satisfactorily portraying the devastation of this illness. My intention today is to assure you that I am adequately devastated. After last week’s episode no. 9, I questioned whether I had any stories left in me. This business of being a writer is not easy and this week, I’m getting a real taste of the challenge of a weekly deadline. I’m trying to dial it back a little bit. I wanna be just a little more humble, a little more real and a little less driven.
Sometimes I like to blame all my life’s problems on the circumstances of this illness. I mean having experienced so much loss, how else is a guy supposed to be but scared, self-centered and seeking comfort. But the wise part of me knows that I have a choice. Joy is an attitude. Reality unfolds and the gifts are abundant.
When I’m willing to follow some simple suggestions, the solution is laid out quite nicely in the 12-step program that I follow. We say, acceptance is the answer to all my problems today. Gratitude is an action. One day at a time is a way of life. Reaching out and asking for help is not easy but it’s worth it. Practicing radical self-care is the best way to be there for others. Feel your feelings but don't let them make your decisions and living with rigorous honesty is always the best policy. Easy Does it.
Thank you so much for your support here. I so appreciate that you’ve read this far. I’ll end now with some more affirmations for myself. Please feel free to edit and use them for yourself:
Healing is possible.
I have just the right number of Substack subscribers.
If I can touch one person in my writing today, I’ve done my job.
It’s ok to miss a week of this publication… or even several weeks.
It’s even ok to close up shop and just go sit under a tree.
I’m enough. You’re enough. This day is enough.
Life is a wild adventure and I don’t have to face it alone. I’m not alone.
Thank you, everybody. I miss you and I love you. Have a good Saturday. Enjoy living in that body of yours. I’ll try to do the same. Hal
Do you like what I write? Please help this community grow by sharing this post with one person. Thank you!
Follow me on Instagram. (85k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (359 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. It’s my birthday and this is “Living in a Body.” Please click the play button to hear me narrate the story with original music. (12 min) Thank you so much ~ Hal
Bonus Life
The guy standing 18 inches away from me didn’t survive. One moment, Ash and I were standing right next to each other on a bridge of black lava. We stood in awe as the waves crashed beneath us into a turbulent pool of wild ocean energy. In the next moment, Ash was floating out to sea and I was fighting for my life. At the hospital later that afternoon, a nurse with a lovely Hawaiian accent leaned in close to my face and whispered, “You’re very lucky.” She was a native of Kauai. She knew how lucky I was.
Nine years ago, on the day before my 47th birthday, the chances were not in my favor. Most likely I shoulda died, but I didn’t. I got a bonus life. I got to see my daughter graduate from high school and college. I got to experience the agony of a breakup and the blossoming of new love. I released a CD called “Life Wonderful.” I got to be with my dad when he was ill and when he died of cancer. I became TikTok famous. I created “Low Key Gliding.” And over the course of the last six months, I’ve gotten to experience the traumatic onset of severe chronic illness. Ash didn’t get a bonus life. He floated out to sea and was never seen again. His daughter had to travel to Kauai for a memorial service by the ocean. From what I hear, seals showed up at the service that day.
My story begins in January of 2013. I was working as an artist-in-residence at St. Vincent-Ferrer Elementary school in Cincinnati when my jaw locked up. For two months, eating was painful, talking was painful and even kissing was painful. Having lived many years with a variety of symptoms that showed up and never went away, I didn’t know if my jaw would ever be free again.
But my trip to Kauai was on the calendar for the end of February. I’d be joining JP Allen in his home of Kilauea on the island of Kauai to co-lead a week-long harmonica retreat. This jaw issue was really putting a damper on my thoughts about the trip and Hallie was pleading that I not go. She was convinced that I would go to Hawaii and die while I was there, but I was determined to make the trip. There’s no way that I was gonna let this opportunity pass me by. At the last possible minute, I found a TMJ specialist in Cleveland and paid for the rushed fitting of a jaw brace to give me some relief.
On my first step off the airplane, I realized that I was entering paradise. The warm, damp ocean breeze was so sweet and so delicious. My chauffeur gave me a proper Kauai welcome by treating me to my very first whole coconut. Even with my jaw clamped shut, I was able to enjoy sipping the milk from the coconut with a straw. Except for the challenge of living in this particular body, the weeklong harmonica retreat was a great success.
On the last day before heading home, four of us hiked down a hidden path behind Ben Stiller’s mansion near Kalihiwai Bay. We were in search of an other-worldly location called the “Dragon’s Spout” where generations of volcano meeting ocean had created a desolate field of black lava formations. Unknowingly, we were walking into some very dangerous territory in a particularly dangerous time of year. On the other hand, on the way down the mountain, I experienced a glorious release in my jaw. I remember the feeling of relief and freedom as I bounded down the path toward the ocean. I was celebrating the fact that maybe I wouldn’t spend the rest of my life in pain.
At one point, JP, Ash, Greg and I stopped on a natural bridge of black lava that overlooked a 20 foot round pool of undulating water. The waves would travel down a wide canal, crash under the bridge and then explode from the rock crevices like a dragon’s spout. None of us sensed that we were in danger. We were on dry lava. I remember looking out to the ocean and seeing some very large waves coming our way. But we stood with our backs to the sea, poised with our phones waiting to capture the next amazing Facebook post.
Very suddenly, with the devastating force of a locomotive, a huge wall of water swelled up and over the bridge and struck two of us from behind. Within a split second, I was submerged, tossed about like a rag doll and sucked into the belly of the dragon. Immersed in blue and white ocean turbulence, I was underwater for an extended period time. When I finally found the surface, I gasped for air and then I was struck again. Several times, my head hit sharp rocks and I gained a very clear understanding, "this is what happens when you're about to die in the ocean.” I remember thinking, “this Ocean doesn’t care that I’m Hal Walker and that I’ve got a life in Ohio that needs me.” Completely powerless, I could feel myself being pulled out to sea by the raging current.
Finally, there was a calm. I looked out at the vast gray ocean and felt the deepest terror and despair that I’ve ever experienced in my life. How could this be happening to me? I couldn’t believe that Hallie’s greatest fear was actually coming true. How would she face this? How long could I last out here? I wasn’t ready to die, but under the circumstances, it seemed like I didn’t have much of a choice.
JP started shouting for me to take off my shoes and my pants and start swimming. Overwhelmed with shock and fatigue, I floated for a moment and then started flapping my arms in the direction of safety. The current was like a raging river. It was so wild that my swimming didn’t seem to make any difference. But then a wave pushed me in the right direction. With bloodied fingers, I found myself hanging for dear life onto the side of a sharp black lava wall.
It was my incredible good fortune that Greg had picked up a four foot walking stick on the way down the mountain. JP reached for me with the stick and I was able to grab it but we soon lost our connection and I went under again holding the stick. The second time we connected, he was able to drag me to a more accessible spot. Miraculously, the next wave pushed me up onto the sharp rocks where I crashed. JP hovered over me shouting, "Keep moving, Hal! There are more waves coming! You gotta move 20 more feet. C’mon! You gotta move!” Plastered to the rocks and totally spent, I was dead weight. I s**t myself while JP dragged me to safer ground.
Fairly quickly, the rescue people arrived with a helicopter. I remember three big, strong men holding me secure as the waves continued to crash down on us. As they strapped me into a metal crate to be lifted out of there, I learned that the other guy, Ash, didn’t make it. JP had seen him floating face down out into the ocean. Our sense is that Ash was struck in the head and made unconscious on the fall into the water hole. Phua Chuan Chin (Ash) was a lively 62 year old man from Singapore. He was a smoking cessation counselor and had dreams of using the harmonica to inspire people to quit smoking in Singapore. (see YouTube video below to see Ash in action)
I laid there in my underwear unable to move but knowing that I had survived. I was in shock, shivering with a loud ringing in my ears. The helicopter would carry me to an ambulance which would take me to the hospital. As I was lifted into the sky, I could see out of the corner of my eye a spectacular view of Kalihiwai Point. JP’s words just kept repeating in my brain, “You did it, Hal. You survived. You performed a miracle today, my brother. You’re alive.” I just kept saying, “I’m alive. I’m alive.”
When my friends showed up at the hospital, I burst into tears. (See I Love Crying) I was beat up real bad. My whole body was covered in minor cuts and abrasions. I lost my glasses, my iPhone, my shoes and my clothes, but I was in one piece. When we got home from the hospital, JP spent a couple hours cleaning my wounds with hydrogen peroxide, tee tree oil and noni fruit.
The day before my 47th birthday. I went to the edge and I survived. Now I get a bonus life. Today’s a bonus. Yesterday was a bonus. It’s all a bonus life. Thank you so much for reading. I appreciate you. Enjoy your bonus life. Hal
Please help this community grow by sharing this post with one person. Thank you!
Follow me on Instagram. (85k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. It’s Saturday and this is “Living in a Body.” Please click the play button to hear me narrate the story with original piano music. (a 10 minute listen) ~ Hal
If you like what I write, I hope you’ll share this publication with one friend. Thanks!
Stolen Quarters
You're gonna find out sooner or later, so we may as well have this conversation now. I'm an addict. I spent many years in active addiction and I’ve spent equally as many in 12-step recovery. Today, I'm so glad to have some solid abstinence and sobriety behind me. If you also identify as an addict, you already know things about me that I've never told you. If you're not an addict, you may need me to do some explaining.
You see, moderation has never been my strong suit. I’ve never been a “middle path” kinda guy. I like things that are intense and I like things that make me feel good. Generally, if it feels good, I want more of it. For many years, I lived two lives. There was the life I showed you — Hal, the golden son of a Presbyterian minister — and then there was the hidden life — flippant Hal sneaking around in a dark alley way on a mission to score somethin’ or other. I’m not proud to say that there have been times in my life when getting a fix took precedence over my family, my friends and my work. There. Now you know. Time for church…
It’s 1980. I’m 14 years old and I'm sitting in the second row of the United Presbyterian Church in Kent. My mom insists that my three sisters and I sit toward the front of the sanctuary as a sign of support for my dad who’s the minister of the church. My father’s powerful baritone voice soars from the pulpit and then flies into one of my ears and right out the other. I'm sitting quietly in the pew fantasizing about pinball. When we get home from church, I will ride my bicycle a mile and a half across town to my favorite place, the Play Palace. I’ll spend the afternoon all alone inserting tokens into machines in search of free games, high scores and peak moments.
My dad’s sermon is the perfect opportunity for me to plan my escape. The sense of anticipation shortens my breath and heightens my senses. If pinball were food, my mouth would be watering right now. I visualize every subtle nuance of my current favorite game, “Eight Ball Deluxe” and I imagine myself owning, conquering and becoming one with the machine. Today’s gonna be the day I finally satisfy my adolescent longing.
I remember the hours after church on Sunday to be the most depressing hours of the week. Drained by a full morning of being the son of a preacher’s wife and strained by the thought of Monday’s piano lesson (for which I was unprepared), I needed a release. Looking back, I wish I’d had the courage to call one of the guys over on Ada Street. Mike Gilcrest, Dave Predergast and Rick Brown were known for their weekend pick-up games of basketball and touch football. Or I wish I’d had the notion to reach out to my next door neighbor Georg. We’d been best friends all through elementary school. Together as kids, Georg and I were a dream team for unplugged inventions. We created a frisbee golf course, we built a secret clubhouse and we wrote a book called “The Nothing To Do Book.” On this Sunday afternoon however, I wasn’t interested in connection or invention. My mind was made up. I needed a pinball fix.
My dad was a great man. In fact, he was nearly perfect. Believe it or not, in 90 years of living, he never once told a lie. He graduated from Birmingham-Southern College at the age of 18, went on to preach from a pulpit for 50 years and then spent his retirement as a gardener, an environmentalist and a theologian. In the 1980’s, my dad always kept a nice stash of quarters in his desk drawer.
I, on the other hand, was lacking a moral compass. I’m not proud of it, but for whatever reason, early in life, I picked up lying, cheating and stealing. Those behaviors became the norm for me. On those depressing Sunday afternoons, surrounded by privilege, with money in the bank and given everything I ever wanted, I would sneak into my dad’s dresser and steal just enough quarters so that he wouldn’t notice. I’d walk out with sweaty palms and quarters in my pocket. I’m very glad to report that before my dad died, I made amends for these actions.
It’s a blue sky Sunday afternoon in the 1980’s and I’m over on East Main Street about to enter the den of the Play Palace. When I step in, I become the king. The people move aside and the machines come alive. The whole world stops. I’m swimming in the sounds of Ms. Pac Man, Crazy Climber, Dig Dug, Donkey Kong, Tempest and Frogger. This is the original video game room and I’m the original generation. All alone, I step up to the machine, insert my token and the play begins.
Not only am I an addict, but I'm also a pinball wizard. Over the years. I've gotten my share of high scores, extra balls and free games. There’s a classic knocking sound that a pinball machine makes to signify the winning of a free game. It’s a loud, satisfying crack against the skull. The sound signifies a next level of success. It’s an intense shot of serotonin and it lasts no more than an instant. If you don’t know what I’m talking about, go find yourself a pinball parlor somewhere and hang around just long enough to experience that iconic knock of a free game.
The object in a game of pinball is to keep the ball in play for as long as possible. But eventually the game has to end. The ball goes down the shoot and you run out of quarters. Eventually, it’s time to go home. So it’s about five o’clock now and I’m walking out into the sunshine. I’m faced with the reality that once again, I just spent three hours all alone in a dark noisy room on a beautiful sun shiny day. This is the regret phase of addiction. “Damn. Why’d I do that again? I’ve got to stop living like this. Next Sunday, I should stay home and practice the piano.”
Actually, I can see how that cycle of addiction played out many times in my life. The imagining and the anticipation leading to the stolen quarters which leads to the solitary ride across town which leads to the peaks and the highs and is followed by the lows and the regret and the vowing not to do it again. If you know what I’m talkin’ about, you know what I’m talkin’ about.
Isn’t it amazing to be human — all our stories and our quirks and our old patterns. I’m glad to be 55 now. Actually, I’m turning 56 next Saturday. I’ve still got that hunger inside but it’s quelled by some years of good living, a sponsor and the fact that I’m 85% bedridden. I still need help connecting with that part of me that lives in reality, that knows how to love and has the freedom to take the next right action.
I hope this post wasn’t too much for you. For some reason, I trust you enough to tell you this kind of stuff. If you’re inspired, feel free to share something about your dark side that you’ve never told anybody. Ha. I’m just kidding. But no really, this is a safe place to be yourself with all your humanness. I’m so glad you’re here. I’m glad I’m here. I’d love to connect with you in the comments. Have a great week. Hal
Do you like what I write? Please help this community grow by sharing this post with one person. Thank you!
Follow me on Instagram. (85k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (55k subscribers)
I haven’t figured out Twitter yet, but I’m there. (354 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. It’s Saturday and this is “Living in a Body.” Please click the play button to hear me narrate the story with original piano music. (9 minutes)
No Flex
Man, I wish I’d taken some more photos of my biceps before all this craziness started happening. I’ve always been a skinny guy, but I had some nice biceps. In fact, I had a special liking for my biceps. Every once in a while, I’d stand up in front of the mirror and I’d put my arm up to flex. I gotta admit it, I liked what I saw. I liked the shape of the muscles connecting my arms to my shoulders. I liked the curve on top and the way I could make it bigger by bringing my forearm down a little bit. In the dressing room at T.J. Maxx, I'd try on a short sleeved shirt that was just a little bit snug on me. With the sleeve tight up against my skin, I felt strong and sexy. I’d have the thought, “Damn, you look good!” Of course, I realize the mirrors and the lighting in those places are always deceptive and it never looks quite as good when you get home. But damn, I looked good.
I'd like to take this opportunity to introduce you to my friend JP Allen. In 1996, he was one of the best men at my wedding and in 2013, he literally saved my life. JP and I met briefly on the Frisbee field at Northwestern and it was there that we discovered our mutual love for all things harmonica. After graduation, JP called me up and asked if I wanted to travel with him to Elk River, Idaho to live up on a mountain in his uncle's A-frame -- no running water, no electricity, no cell phone, no credit card. Of course I said yes and a lifelong friendship began. In a couple weeks, I'm gonna tell you the story of how JP saved my life on the day before my birthday nine years ago. JP, I love you, man. Oh s**t, I'm gonna cry now. (See ep. 5, I Love Crying)
JP launched the Idaho trip from his family's home in Great Neck, Long Island. He picked me up in Ohio and we continued westward. Legend has it that JP and I played train rhythms on our harmonicas the whole way to Idaho. We were a couple o’ long-haired, young, hot harmonica players driving across the country in a capped Mazda pickup truck in 1989. If only we knew how good we had it back then. JP was doing Dan Millman’s Peaceful Warrior exercises. I was on a spiritual quest. You can see in the photo below that I'm reading "The Joy of No Sex."
We arrived in Northern Idaho in the late Spring and there was still snow on the ground. We filled a non-working refrigerator with packed snow to keep our food cold for the month. It was six weeks of rustic living. We had to park the truck at the bottom of the mountain and we carried all our supplies up the hill on our backs and on our mountain bikes. I'm the kind of guy that preferred to carry everything in one trip, so that’s what I did. I'll let JP tell you the story:
“When Hal and I were in Elk River, Idaho, I'll never forget the time we were climbing up the mountain and he was carrying about three times the weight I was. His strength almost seemed godly to me. I consider myself a pretty strong skinny guy and Hal was a skinny guy who was about three times stronger. He hauled all of his luggage up in one go and then we went on to live in this cabin up in the mountains for a solid month. He carried all his accessories and necessities up in one go. It blew me away. “ - JP Allen, Austin, Texas
After 6 months of lying in bed and at times not having the strength to lift my own glass of water, I've lost a lot of muscle. I have no flex. My biceps are fading fast. In fact, there are times when it sickens me a little bit to flex, so I generally prefer not to try. I’ve got no biceps, no calf muscles and no thigh muscles to speak of. It's all turning soft. Recently, I've even lost a couple arm wrestling matches to people that, in the past, there's no way I would have let beat me. For a competitive guy like me, it’s very humbling.
Your tendency might be to ask, “Well Hal, have you tried exercise?” And then you might hear the collective groan of the worldwide community of ME/CFS sufferers. “No… obviously you have no idea.” You see, exercise is not really an option for me. The slightest exertion — walking up the stairs, lifting my arms, recording this podcast or standing up to pee — can be sickening or can cause the worsening of symptoms. It’s poorly named, “post-exertional malaise.” Malaise? C’mon now. Actually, I looked up the word “malaise” and it’s more appropriate than I had realized.
Malaise: noun ma·laise | /məˈlāz/ 1. :a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify.
There are no two ways about it. Myalgic encephalo-f*n'-myelitis, also known as chronic (f*k you) fatigue syndrome is a mean son-of-a-b*h (see Flippant Hal) and it's taking my gorgeous biceps away like some cruel, savage invisible beast. My arms and legs lie there defenseless like soft jello weight.
I’ll end on a positive note though. I’m grateful that these days I have the strength to sit up and type. In fact, I've been taking an online typing course that I'm really enjoying. Today, I'm able to type full paragraphs without even looking at the keyboard. After all these years of hunting and pecking, it’s really quite fun. Actually, it’s a little bit like playing the piano.
I have friends living with this illness that aren't strong enough to sit up in bed. My friend James Strazza, who was recently featured in USA Today, can’t get out of bed to use the bathroom. He’s a great musician, but for the last two years, he’s been living in the dark with silencing headphones over his ears and an eye mask over his eyes. Dammit. Say a prayer for James today. Or better yet, make a donation to his GoFundMe.
So this is the takeaway. Go love your biceps today. Whatever biceps you got. I’ll do the same. Go look in the mirror and if you’re able, hold up you arm and flex and whether you believe it or not, say “Damn, you look good.” These bodies of ours won’t be around forever. We may as well love ‘em while we got ‘em. I love you. I appreciate you. You made it all the way to the bottom of this post and you’re still with me. I’m grateful. Now go have a great Saturday and I’ll see back here on Tuesday for “What’s Your Story.”
Do you like the stuff I write? Please help this community grow by sharing this post with one person. Thank you!
Follow me on Instagram. (82k followers)
Hang out with me on TikTok. (1.5M followers)
Grow with me on YouTube. (53k subscribers)
I haven’t figured out Twitter yet, but I’m there. (298 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Living in a Body is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. It’s Saturday. I’m Hal and this is my book-in-progress “Living in a Body.” Help build this community by clicking the PLAY button above. If you enjoy what I write, please share this with one friend. Thank you! Hal
Episode 6 - Bringing Down the Norwegian
(Press PLAY)
For years, I resisted the temptation to cut the tree down. I mean it was a Norway Spruce. Half my family is Norwegian. My dog Nell was a Norwegian Elkhound. In my world, you just don't go cutting things down that are Norwegian. Seriously though, this was a big tree. Even though it was jammed up next to the garage for all those years, this tree had some wisdom. For all I know, it was older than me. And then there’s the environmental impact of cutting down a big tree like that. Let's just say, I put it off for years.
But the tree was in the way.
You see, in my normal (pre severe ME/CFS) life, I'm a gardener. You can ask my next door neighbor, Merl. He's seen the way I've transformed that backyard from a concrete turn-around for three cars to a living, breathing ecosystem. My specialty is blueberries, lettuce, chard, okra, tomatoes, purple green beans and compost. But if you look closely in the picture below, you'll see that there was a big tree in the way. No matter how many low branches I cut off, the funny looking Christmas tree at the top would cast a big shadow on my garden all morning long.
In the late Spring of 2019, I made a difficult decision. I called Jim the tree guy and I hired him to bring down the Norwegian. The story I’m about to tell you is the incredible domino effect of good things that happened after that tree was removed.
The downing of the tree had an almost immediate effect on the garden. Suddenly, my early summer lettuce plants and baby chard plants seemed so happy drinking up the newfound morning sunlight. Suddenly, there was a wide open sky that brought a real freshness to the back corner of my yard. I soon realized that this fresh new space, without all those falling pine needles, was a brand new sitting area.
So, I found the electric sander in the basement and I dragged out the neglected, wrought iron bench from the garage and I got to work. Now mind you -- I’m not someone who knows how to refinish a bench. I mean I was raised to be a “thinker” not a carpenter. (see Sudden Onset) I took the bench apart piece by piece. I sanded and polyurethaned all the wood. I even replaced one of the slats with a new piece of pine.
My newfound talent with an electric sander inspired me to drag out the neglected ping-pong table from the back of the garage and sand the surface so it would be playable once again. Kim and I started playing ping pong every night and when we were done, we would rest on the newly refinished bench with an unobstructed view of the sky and the moon. When Merl wasn't looking, we'd make mad passionate love out there beneath the stars . (Just kidding - I love you, Kim ❤️ ... and you too, Merl.)
Our experience playing nightly ping pong led Kim and me on a Google search of places to play in the Akron area. Amazingly, we discovered that the Samson Dubina Table Tennis Academy was less than a half hour away from my home. We showed up at the academy one night and my lifelong passion for table tennis was reignited. One of the things I grieve most about living with severe ME/CFS is the loss of those visits to the SDTTA. For a little over a year before the pandemic, I found a home away from home there. I miss it so much. It was just starting to feel like family. When I’d walk in the door, people would shout out, “Hal!” If you haven’t been there yet, I highly recommend a visit. Tell Samson Dubina that Hal sent you and that I hope to be back someday.
Right about the same time as taking that tree down, some Kent UU friends and I took a look at the empty lot behind the church and realized how overgrown and unkept it had become. The old benches were laying there broken down and rotting. The wild of Ohio had taken over the land. Without asking for permission, we dove into those briar patches and cleared out truckloads of small trees, poison ivy and brush. As a secret mission, I took the benches home piece by piece on my scooter and started making 'em new again.
I remember thinking to myself, “After all the years that I’ve complained about those benches being neglected, it never once occurred to me that I could actually do something about it.” Well, I did something about it.
Wooden slat by wooden slat, right next to the flourishing garden, I began the process of refinishing those benches. I sanded, stained, painted and polyurethaned and then put it all back together with stainless steel hardware so the benches would last forever. That September, I was on fire with my covert bench rebuilding project. I can still smell the September air.
When the first two benches were finally done, Cameron and I did a late night covert installation. We used the car headlights to guide the set up. I was determined that no one was gonna find out who know who had done it.
I’m confident that all this happened because of the sacrifice of that Norway Spruce. Thank you, Norwegian. Thank you for the ping-pong. Thank you for the benches. May these benches forever be a tribute to your gift. May the ping-pong table bring many hours of joy and may we continue to tell your story for years to come.
So I ask you, reader. I ask you, listener…
“What metaphorical trees need to be cut down in your life so that the sunlight can shine on the garden and make a cascade of good things happen?”
If you’re willing, please leave a response in the comments.
One thing I know for sure is that taking the tree down is the easy part. We’re the ones that have to do the work of sanding the ping pong table, clearing away the brush and refinishing the benches. We’re the ones that have to forge the work of building community in a broken world. The sunlight can only do so much. We’re the ones that have to tend the garden.
Do you like what I write? As long as this body allows, I’ll keep putting it out there. Please help this community grow by sharing it with one person.
Follow me on Instagram. (82k followers)
Hang out with me on TikTok. (1.6M followers)
Grow with me on YouTube. (53k subscribers)
I haven’t figured out Twitter yet, but I’m there. (298 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi! “Living in a Body” is now available as a PODCAST. Click the play button above to listen. (10 min. Exactly) Hal
Trigger Warning: This episode mentions calls to a crisis hotline and uses the F-word twice.
Ep. 5 - I Love Crying
(Press Play)
I don’t remember exactly how the story goes but it’s stuck in my memory as being important. It was a hot summer day and I was driving home from Aldi in Stow with the windows rolled down. At the stoplight on Fishcreek Rd, I pulled up beside an old Toyota expecting to wait for the light to turn green. I glanced over at the car next to me and I realized that it was my friend Daniel. His window was rolled down too and he was visibly crying with tears coming down his face.
I’m not sure, but I may have said “thank you.” It may have just been a thought , but if I could relive that moment, I would say it out loud. "Thank you, my brother. I love you, Daniel. Thank you for being human. Thank you for sharing it with me in this unexpected moment surrounded by cars, strangers and heat coming up from the concrete. Thank you for showing me your tears. You have no idea how much it means to me.” That would have been saying too much, but little did Daniel know that his crying in the car would stay with me for years.
I’m an advocate for crying. Just so you know, I cried several times when I wrote that last paragraph. I deserve to cry. I mean 2021 was a rough year for me. Sure, people keep telling me how inspired they are by my positive attitude and yes, I’m finding ways to make the best of this one life, but it's been a year of loss and grief. I’m glad I cried as much as I did along the way. Truly, I appreciate the role that crying has played in my life. I'm so glad to be able to feel.
The first major "crash" happened at the beginning of August. On Tuesday night, Kim and I were sitting on the front porch with the crickets. I was expressing to her my frustration with not being able to accomplish all the things that I want to in life. There just never seemed to be enough hours or days or years to learn all the technology, produce all the music and build all the empires that are churning in my soul. It was a beautiful August night. Kim and I made a list of my passions-of-the-week and she suggested that I focus on just three of them this week. “That sounds like a great idea, Kim. Thank you. Goodnight. I love you. ❤️”
I took a night scooter ride into Kent and then came back home to practice the chuka-chuks (rhythmical Juggling) before bed. A mosquito sprayer passed by my open office window and then I noticed that the ringing in my ears suddenly got louder. This was the first sign that something was wrong. I slept through the night and woke up to a whole new reality. Something in my body had shifted. Similar to April 1992, January 2007, and March 2013, some kinda switch got flipped. This crash was the first of a life-altering five-month-long series of crashes. It remains a medical mystery to this day —Myalgic Ensephelo-(f**n)-myelitis/Chronic (fk you) Fatigue Syndrome.
Each crash left me in a deeper state of illness — closer and closer to being bedridden. Every 5-8 days, it would happen in the same terrifying way and I have no idea what was causing it. It was like a chemical dump of adrenaline or some wierd kind of neurological seizure. The ringing in my ears would suddenly get louder, my heartbeat would spike, I'd have a sleepless adrenalized night and the next day I’d be left feeling like a limp rag that had been put through the ringer many times. I started marking the crashes on the calendar and I started calling the local crises hotline in tears.
I was never suicidal but at times I was very interested in figuring out a way to get my family to agree that a compassionate exit might eventually need to become an option. The first time I dialed 330-676-HELP, I was impressed by the operators compassion. "It's ok to cry," he kept saying over and over. "I'm here… That sounds very difficult… I know… I know…It's ok to cry." The conversations always ended with me promising that I would call again before taking any drastic action. I promise.
My sister Johanna has played an important role in my crying life. For many years, she's been active in the co-counseling community. (Re-evaluation Counseling) When we have a “session” together, Johanna and I set a timer and we take turns listening -- holding each other’s complete goodness in our delighted attention. We’re making up for all the times the well-meaning adults of our childhood tried to make the crying stop. In RC, it's called discharge. Discharge can show up as crying, laughing, shaking, yawning, talking or punching a pillow. The thought is that after we discharge, we get a new perspective on reality. We’re able to appropriately differentiate between the hurts of the past and present time reality. When I call Johanna, I don't have to tell her the whole story, I can just jump right into the discharge. “Johanna, will you listen to me cry.” “Yes, Hal. I will.” She listens for a while and then it’s my turn to listen. If you don’t know her, Johanna Walker is a bit of an emotional rock star in my world.
One memorable crying session of mine was a couple weeks ago. As you may know, three college friends of mine spearheaded a wildly successful fundraising concert accompanied by an equally successful GoFundMe campaign. The funds raised at "A Love Song for Hal" have made it possible for me to pay medical bills, hire a caretaker, own an electric wheelchair, purchase a much needed stairlift and make a large donation to the Open Medicine Foundation for ME/CFS research. (See the Announcement) For a least a little while, I haven’t had to worry about the financial devastation that severe ME/CFS can cause.
On this particular evening, I knew that we were approaching a significant fundraising milestone. So just for the heck of it, I hopped over to the GoFundMe site to check out the numbers. It appeared that within the last hour, three donations had been placed simultaneously bringing us over this incredible milestone. The three donations were from my three dear college friends — the guys that had masterminded this whole extravaganza — Jerry, Stu and David. It touched me so deeply. I lay there and wept in amazement and gratitude for their thoughtful scheming. I’m still so moved when I think about it.
Things have balanced out a bit since the new year. For whatever unknown reason, my last crash to date happened on Christmas Day. I’m in a more stable place these days, but I’m still prone to crying and I’m glad for it. Ever since my dad died, there's been one sure fire way for me to enjoy a good cry. All I have to do is start speaking aloud an imaginary conversation with my dad. It works every time.
"hey, dad… i know, son… it’s been a rough year for me, dad…i know it's not easy…i'm so proud of you, son…i know, dad… it’s ok to cry... i know… i know… dad, wanna go on a bike ride with me?… i’d like that, son… i love you, dad…. i love you, son.”
Do you like what I write? As long as this body allows, I’ll keep putting it out there. Please help this community grow by sharing it with one person.
Follow me on Instagram. (82k followers)
Hang out with me on TikTok. (1.5M followers)
Grow with me on YouTube. (53k subscribers)
I haven’t figured out Twitter yet, but I’m there. (298 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Start your own Substack! I’d be happy to help you get started.
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. I send out this jam-packed “newsletter” every Saturday morning and a much smaller version every Tuesday morning. If you know someone who might like to join the “Living in a Body” community, please pass it on. Let the stories unfold. ❤️ H
Flippant Hal, the Golden Son
Sometimes in my writing I get a little flippant and to be honest, I kinda like it.
I'm the only son of a Presbyterian minister. Surrounded by sisters, I was the golden son -- expected to be perfect in every way. My essential job was to please and impress my mom’s friends. I've spent my entire life trying to make sure that everybody's happy and that everyone likes me. If you don’t believe me, ask 1.5 million of my TikTok followers. You can see the problem illustrated quite well here in the Instagram comment thread below:
If you need more convincing, ask Keith Gribbins, the guy at Scene magazine that labeled me a "folk charmer" in the headlines. When it comes to pleasing, I’m a master. You might call me a “master pleaser.”
If you’re still not convinced of the seriousness of the problem, let me put it to you this way: because of my impeccable charm, my wit and my timing, I was voted “Best Personality” in the 1984 senior superlatives at Kent Roosevelt High School.
I rest my case.
But I'm sick of it. I’m tired of it. And I’m done with it. Hear me now that I'm ready to ruffle some feathers. Right here on Substack, you should plan to meet a Hal Walker that you’ve probably never met before. The question is: are you ready?
Here on Living in a Body, I want to be free of the worry that somebody might have a negative thought about me. In fact, here in this community, I want to piss a few people off. I’m hoping that some of you will storm away from this newsletter and say,
"I'm never going back. That Hal... he's too flippant, too raunchy, too cocky. To be honest, I’m concerned.” - pissed and concerned reader.
Listen, everyone needs an outlet for their flippant side and this is gonna mine, so I suggest you prepare yourself.
So tell me…what does this so-called word “flippant” mean anyway? Let's investigate.
Flippant: adjective flip·pant | \ ˈfli-pənt \ 1. :lacking proper respect or seriousness.
That's exactly it. For once in my life, let me be a little disrespectful here. Maybe I'll even use a bad word occasionally. Goodness gracious. I am ready to let that flippant side loose on the world — right here on “Living in a Body.” And you know what… I don’t even care if you have a problem with it. So there, dang nab it!
Unfortunately for me, the people who read Living in a Body are people like my mom, my high school physics teacher, my aunts, my uncles and the members of my church. All the people that I've been trying so hard to please and impress for so many years.
I keep thinking, wouldn't it be nice to have an audience of people meeting me for the first time - people that won't start "getting concerned" if I get a little outrageous. Strangers would learn quickly that I don't care what people think about me. They would admire the edge in my tone and they’d keep coming back for more because of the way I write the truth — no matter how ugly it gets.
“There goes that Hal, the golden son —unafraid to be flippant, unafraid to get real.” - reader who’s never met Hal.
Last week in Sudden Onset, we talked about STD's and HIV and UTI's and I think that was a real good start. I mean I've been down some pretty dark alleyways in my time, people. I am not proud of some of the shenanigans I've performed. But one thing for sure, I don't want to have to hide that stuff here for fear that my childhood piano teacher might be a little shocked or a little disappointed. (By the way, if you're here, childhood piano teacher, please know I that I love you and your family dearly and I'm honored that you made your way here to read this silliness. ❤️)
When I write, I like to get into a flow. I enjoy speaking it out loud with a whole lot of passion, drama and character in my voice. (Audio Here) I love writing stuff that makes me laugh out loud. I realize that a lot of the humor is probably inside jokes between me and myself, but to be honest, I'm here to have a good time. I mean c’mon people, I'm 90% bedridden. I've got a good excuse.
“C’mon people, I’m 90% bedridden. I’ve got a good excuse.” - Flippant Hal, the Golden Son
A couple Saturday's ago, I sent my big Announcement to a super smart, professional editor friend of mine. I asked him to give me his honest feedback about the piece and he did. It was Friday night, the announcement was due on Saturday and I had a real good feeling that this thing was done and it was a home run — out of the ballpark. I shared the secret link with Jerry and within 15 minutes, he was calling me on the phone with some concern in his voice. "Hal. I'm concerned about the tone." He used words like "cocky.” He thought that new readers might be "turned off." He wanted the new reader to meet the Hal that he knows and loves and he felt the tone that I was taking wasn't doing that.
It was very hard to hear this feedback. Jerry didn't seem to understand that that tone comes from a place of me talking to myself, laughing out loud and having a good old time throwing words down onto the page. It was flippant Hal, the Golden Son and he was having fun. After having worked so hard, the idea of re-toning that whole piece made me deflated and (even more so) exhausted.
But I'm sure glad that I did. (Thank you, Jerry.)
This was a great example of the creative process at its finest. You feeling super good thinking your work is done, reaching out to a friend so he’ll tell you how amazing it is and how awesome you are but he comes back and basically says you gotta write the whole thing over and then you actually do write the whole thing over and it turns out better than it was all because you were willing to hear and consider your friend’s challenging feedback — the creative process. It took about an hour to revamp the piece. I took a more humble tone and a quieter voice and I’m really glad that I did. The Announcement turned out so much better.
BUT I’M NOT GONNA DO THAT EVERY TIME. OK!?
As I lie here in my bed, facing the greatest challenge of my life, I don't want to hold back sharing with you the pain, the tears and the ugliness of what I'm going through. It's very serious. Sure I keep smiling, but I cry a lot too. (see next Saturday’s Substack, “I Love Crying.”) Also, I don’t wanna hold back sharing some of the dark places I’ve been in my past. I’ve lived several lives and I’m here to write whatever comes up without hiding. They say that the most personal is the most universal and I’m willing to go there with you if you’ll allow it. If I make some mistakes and happen to piss you off, it’s all for the best. It’ll be great practice for me.
“As I lie here in my bed, facing the greatest challenge of my life, I don't want to hold back sharing with you the pain, the tears and the ugliness of what I'm going through.” - Hal
My love Kim has seen me at my best and she’s seen me at my worst. Kim has met the flippant, spontaneous, outrageous golden son and she usually forgives him. She knows that a little raunchy humor and unexpected honesty gives me some temporary relief from this unrelenting discomfort. I so appreciate the way Kim rolls her eyes at me at just the right moments. She’s an angel in my life. Sometimes I think she’s a little surprised at herself for laughing at some of the stuff that comes out of my mouth.
Let me be clear. I don't want to be rude, I’m not gonna be mean and I’ll try not to be an ass, but I do wanna have fun here and I want to be real. I want to tell the truth and sometimes I wanna exaggerate the truth for dramatic effect. I wanna have the freedom to be myself. Equally, I want to offer you a safe space to be yourself. I was so pleased with the success of Tuesday’s very first What’s Your Story? People told stories of a significant musical moment in their life. As I keep putting the prompts out on Tuesday mornings, I hope you’ll speak from your heart and from the edges of your heart. I hope we can get a little vulnerable together. I can’t wait to read what you write.
As a lifelong master pleaser, it’s way past time for me to learn that what anybody else thinks about me is none of my business. My business is to write and to lay it gracefully into your inbox. One week at time, I’ll type the words and over and over again, I’ll edit the words. Then on Saturday morning, I’ll push the blue publish button and I’ll let it go. I’m honored that you’ve let me into your box. (That’s what she said.)
❤️ Hal
Do you like the stuff I write? Well, as long as this body keeps letting me, I’ll keep putting it out there. Please help this community grow by sharing it with one person.
Start your own Substack! I’d be happy to help you get started.
Follow me on Instagram. (82k followers)
Hang out with me on TikTok. (1.5M followers)
Grow with me on YouTube. (53k subscribers)
I haven’t figured out Twitter yet, but I’m there. (298 followers)
I stop by Facebook occasionally. (2.3k followers)
My website is super old but I’m hoping to revamp it soon.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, Text me: 330-625-5168
Get full access to Living in a Body at halwalker.substack.com/subscribe
Hi. I’m Hal. You choose. Read, listen or listen while you read. Join me here every Saturday morning. Let the stories unfold. ❤️ H
Sudden Onset, 1992
(Push Play to begin)
The main thing I learned from four years as a history major at Northwestern University is that I wasn't meant to be a history major. My dad (Rev. Harold Walker Jr.) was a thinker and he had a strong passion for the liberal arts. For as long as I can remember, Harold drilled it into my brain that the most important thing in life is to be a "thinker." He preached that the reason you go to college is to learn how to think and that the liberal arts education is the way to make that learning happen. My dad was a thinker… and he was a preacher.
“Son, maybe you should be a history major.”
“OK, dad. I’ll be a history major.”
Believe me, I tried. I had a sense that my dad was right, but his approach didn't come naturally to me. What came naturally to me were things having to do with the body -- the dance on the frisbee field, the community of the hacky-sack circle, the long solo bike rides into Chicago and that harmonica that I carried in my pocket along the way. I've always been more of a daydreamer than a thinker. I miss you, dad. ❤️
I remember when I got accepted into Northwestern, the Weinberg College of Arts and Sciences sent me a beautifully published booklet about what it means to get a liberal arts education. I spent all summer trying to read that thing. I'd sit down with a cup of coffee and a muffin and try to digest it word by word, sentence by sentence. I knew this stuff was important, my dad had convinced me of that, but I struggled to make any sense of it. At the end of the booklet, it was all just a blur to me.
Once I officially signed on as a history major, the beginning of every quarter was always the same--a new commitment, a renewed promise to do better. "THIS time I'm gonna go to the library every night. I'm gonna find a little private corner that’ll be my very own and I'm gonna study. I'll stay on top of the reading and I’ll do all the assignments. This quarter, I'm finally gonna have something to say at the discussion sessions..." But then, I'd show up at the library and it was always the same. I'd open those dense history books, I’d stare at those words one at a time and at the end of the page, I had nothing. I remained silent in the discussion sessions.
Nothing against libraries, but thinking back now, I wanna say "Hal, what are doing in the library?! Get the hell out of there. You got no business in a library. Man, you belong out on the frisbee field. Dude, you should be practicing music in a practice room somewhere. Pack your bookbag and get out now!" (lol)
Somehow I graduated from Northwestern. The following summer I got a job as a volunteer at the Mt. Hood National Forest outside of Portland, Oregon. We'd go out on the trails for four days at a time doing trail maintenance and back country patrol. When the summer gig was up, my new German girlfriend Ami and I rode an 800 mile, 6-week bicycle trip around California — no credit card, no cell phone and practically no money. I'll tell you more about that another time.
After the bike trip, Ami and I took a Greyhound from San Francisco to Ohio. She went on to Paris and I moved back in with my parents. All I wanted was to live in my body and be free. I wore messy clothes, I got a nude modeling job at Kent State and I read one of my all-time favorite books, Illusions.
“Listen,” he said. “It’s important. We are all. Free. To do. Whatever. We want. To do.”
— Richard Bach, Illusions
Those were the words I was determined to live by. “Free to do whatever I want to do.” I was the long-haired guy on a green mountain bike with a harmonica in my pocket and a frisbee in my bag. I was an athlete and a dancer, an adventurer and a marathon runner. I was an ultimate player, a rhythm maker and a young, passionate lover. I lived in a body and I thrived on things having to do with the body. I was a hiker, a swimmer, a ping-pong player and a long-distance bicycle traveler.
And then one night, at the age of 26, a weird switch went off in my body and I was never the same again. Suddenly I couldn’t run across the street without needing to lie down. I’m sorry to say that we never really figured out what it was. This Spring, it will have been 30 years since I entered the world of living with the mystery of Chronic Fatigue Syndrome, aka Myalgic Encephalomyelitis.
It was the spring of 1992. I was busy searching for the right girlfriend and then one day I got a urinary tract infection. This is where my ME/CFS story begins -- with a urinary tract infection.
So, all by myself, I rode my bike over to the DeWeece Health Center at Kent State and they gave me the diagnoses of a non-specific Urethritis. To this day, those words ring deeply in the true story of my life. It was a "non-specific Urethritis." I walked out of that office with a prescription in my hand and in the hallway, there was pamphlet that caught my eye. With a tinge of that 1980's-90's fear of the monster, I picked up that daunting pamphlet about HIV and I read these words.. "If you've ever had a sexually transmitted disease, you are at a greater risk to be HIV positive. "
Well, I'd never had an STD, but I had had a NON-SPECIFIC URETHRITHIS and I had been sexually active. So I got it into my little 26-year-old, all-by-myself, scared-youth brain that I was at "a greater risk to be HIV positive". In fact, the more I thought about it, the more I realized that I was almost definitely HIV positive. (Mind you, from what we know now, I was at very low risk to be HIV + but there was no internet.) I was just going on the little bit of scary information that I had in my back pocket.
And, of course, I didn't talk to anybody about this. All by myself, I drove into Akron to get tested for HIV and then all by myself, I waited two weeks for the results. As I remember it, the story goes like this: for 14 days, I walked around with a "dark cloud hanging over my head." I was never gonna get to be a dad. I would never be a grandfather. I would die an early, tragic death of AIDS.
Sometime during that two-week wait, the sudden onset happened. On Friday, I ran six miles, went to a poetry reading at Brady's cafe and went to bed as usual. My sister Johanna, who was also living there at the time, had had a friend over to spend the night. We woke up to a beautiful Spring day at my parents house. I came downstairs, went into the backyard and began to notice the weird symptoms in my body. I’ll never forget it.
It was like nothing I'd ever felt before. It wasn’t like the flu or a cold. It was a weird, cloudy sensation in my brain, an aching in my legs and a new kind of fatigue that was different than just being tired. Whereas the day before I had run six miles, all the sudden, I barely had the energy to run up the stairs.
Remember, this was on top of the fact that I had convinced myself that I was HIV positive. So now it was confirmed. Not only was I HIV+ but now the AIDS had already begun to move aggressively into my body. I was legitimately scared.
At the end of the two-week wait, I drove to Akron by myself again. I was relieved to get the negative HIV results, but I was still left with these symptoms. I didn’t know what was going on. I remember feeling like I had somehow been poisoned. Something had shifted in my body and it wasn’t right. Early on after the onset, I had a very real sense that this wasn’t gonna be going away anytime real soon. That was 30 years ago.
Well dad, I did grow up to be a thinker. Lately, I’ve been mostly bedridden, so I spend a big part my day in thought. To be honest, I wish I could take a break from all the thinking. Telling these stories has really helped to keep my mind on track. I think about you a lot, Dad. It makes me emotional to imagine how proud of me you must be as I face this challenge. It’s been a rough year, but I know you’re up there rooting for me.
Now that I’ve finished this piece, I’d really love to go run around the block… or go for a walk… or build a snowman… or go grocery shopping... or do some sled riding. But alas… not today anyway. I think I’ll hop in the float tank and think about what my next story’s gonna be. See you next Saturday. Thank you so much for taking the time to read. ❤️ Hal
Do you like the stuff I write? There’s a lot more to come. Please help it grow by sharing. This Tuesday, I’m starting an occasional Tuesday thread called “What’s Your Story?” where you get to participate in the story telling. Yay! Stay tuned.
Get full access to Living in a Body at halwalker.substack.com/subscribe