What's The Matter With Me? Podcast: Recent Episodes
John Hoppin
My name is John, I’m 42, husband, father to 2, radio DJ, entrepreneur, podcaster, and I have multiple sclerosis (MS). I made the What’s The Matter With Me? podcast to share what I’m going through.
Low Anxiety, Going PlacesIn this episode, I give a shoutout to Kevin for Montana info, share insights from Andrew Pulrang’s Disability Thinking, and discuss prepping Dax Pierson interview questions. I also talk about my kids’ haircuts, our neighborhood, music, therapy, hospital visits, and my recent solo trips and poetry publications.
Shout OutsShout outs to Kevin. thanks for the info about Montana. Kevin does comic book reviews on his YouTube channel Under The Cowl Of MS.
Disability ThinkingNow reading Andrew Pulrang’s Disability Thinking Substack. I’ve always been partial to the combination of disability with thinking, the guy’s been on another level for a long time.
Writing Dax Pierson interview questions. I have been lagging, trying to be recovered fully before doing the interview. I think it may be time to move forward.
I’ll Gladly Pay Tomorrow For A Haircut TodayAfter months of hair drama, i took my kids to Supercuts and John’s long hair was over in a moment. He was happy. With his new haircut, he’s ready for summer.
I’m glad that our neighborhood is a protected cul-de-sac. It means the kids can play outside with the other kids in the neighborhood and there’s hardly any car traffic.
New Music: Magic Fig, “Magic Fig”Magic Fig. San Francisco psych band. I heard it reviewed at the KFJC staff meeting and I ordered it from the group’s bandcamp page.
Cool new record – local band – insane amount of styles – dreamlike hooks – psychedelic SF – full sonic fireworks, Silver Current Label – over the top – combo Sid Barrett mixed with HR Puff n’ Stuff
KFJC Music Notes 6/5/24
24-Hour yogurt is smoother than 8-hour yogurt, go figure.
I went to the Express Care at the Eden Valley Medical Center bc my ear was feeling blocked, like it had somebody’s thumb stuck in it. They prescribed Flonase and something else, and they’ve been making it easier to breathe through the machine
My anxiety is low, put fast away, like it’s in the past. My talk therapist thinks it may be due to the EMDR therapy that we’ve been doing.
ExcursionsI drove the kids to Foothill College where we went to KFJC and we hung out with Jack Tar and Good Karma before having snack on the quad, and then we drove to Hayward. In Hayward, we went to Burger King, a place the kids wanted to go badly after seeing the commercial a million times.
Territorial ExpansionThe next day, I went to Oakland on my own. I’ve learned how to strap the wheelchair onto my car by myself. On Father’s Day, I took the kids to Berkeley. We went to Amoeba Music, Moe’s Books, Games of Berkeley, and had slices of pizza for lunch. My new expanded base of operations includes Oakland, Berkeley and Los Altos.
AcceptancesMy ears were burning, my vibe was strong. Three poems were accepted for publication in two different journals. After a long gap, they were accepted in the same day by editors working half a world apart. It’ll be my first time publishing my work in another country, and also my first time reprinting a poem. Stay tuned, you’ll be the first to know..
In the latest “What’s the Matter with Me?” podcast, John updates on his improved sleep with a sleep apnea device, newfound independence loading his wheelchair, upcoming Montana trip, and reflections on anxiety. He also mentions his kids’ interest in the viral “Skibidi Toilet” videos.A Toilet For The Ageshttps://www.youtube.com/watch?v=KrlkXOxlvCkI asked my son about skibidi toilet, and he replied:
It’s gone viral.. in fifty years, look in the history books, and there’ll be skibidi toilet. Skibidi Toilet is a part of history.
A 10-year-old
Shoutouts https://www.youtube.com/watch?v=M6QOrgMeuMIShout outs to Amy and Matt who had us over for a barbecue
Shout outs to Anthony was in town and came over
It Sucks To Breathe Through A StrawMy sleep apnea CPAP device has been having low pressure, making it hard to breathe through. Unsurprisingly, it triggers anxiety. It’s like breathing through a long straw. To counteract the feeling of not being able to breathe, I adjusted the pressure on my sleep apnea device and slept longer.
I’m trying to get an appointment with the sleep doctor. I’ve slept ok last the last four or five nights.
Sisyphean Labor For Meager RewardCommunity radio DJ holding a torch aloft by the side of the inky black oceanSubmitting poetry is comforting because the process is its own reward. It can just go on endlessly, a bit like the radio.
Talking to my friends, many have some source of anxiety, from stress, responsibility, waking up in the middle of the night, no afternoon coffee, drinking beer and sleeping badly. I guess what I’m going through is a fairly common experience.
I used Curb Free With Cory Lee! as a guide to book a wheelchair-accessible Alaska Cruise for 2025. This summer, we’re going to Montana for family vacation.
The new coffee machine is making better espresso. I haven’t fully figured out how to steam milk and integrate that into my coffee making, so I end up with a cappuccino that is exactly the way I want it.
I’m taking the kids to school in the mornings again.
Uncontrolled anxious thought chains kept me from bed. I didn’t get to sleep until after 1:00 a.m.
Did It By MyselfToday I did something I have been afraid of for months- since we got the wheelchair lift- I l loaded and unloaded my chair onto my van by myself.
In November, when I got the chair lift, I assumed that I couldn’t do it because there were straps and restraints to tie down the chair. A little complicated for me last year, but now, I’ve figured out some ways that I can use it on my own and there’s no other way to figure that out but just doing it
Thanks to my wife who supported me and who loaded my chair in and out of my van for years and now I figured out how I can do it on my own. I’ve needed a victory like this that I could point to and say, “I am improving.”
It takes a couple minutes to put my wheelchair on the car, but not very long at all. It makes me feel independent and that is very good.
In related news, I drove and got my pants hemmed at John The Fashion Tailor in Oakland. I’ve been getting things altered there for 20 years. Hemming six inches off of my pants changed the proportion of my clothes.
Skibidi Toilet is a part of history
I slept pretty well last night
Skibidi Toilet SelfieChapter List* 00:00:01 – Intro * 00:01:57 – Last episode recap * 00:03:54 – CPAP machine malfunction * 00:06:09 – Submitting poetry * 00:06:27 – Community radio DJ * 00:07:23 – Many people have anxiety * 00:08:27 – Wheelchair accessible vacation planning * 00:10:19 – Curb Free With Cory Lee * 00:11:52 – Missoula, Montana vacation * 00:13:28 – New coffee machine * 00:14:38 – Taking my kids to school * 00:15:01 – Uncontrolled anxious thought chains * 00:15:40 – Wheelchair lift breakthrough * 00:18:14 – John the Fashion Tailor * 00:19:58 – Skibidi Toilet is a part of history
Compulsive behavior sequences are keeping me up at night, precluding a good night’s sleepI’m driven from bed, get dressed, go outside to calm down, and eventually get back in bed. Out-of-control thoughts about the various trauma I’m going through overwhelm me, and soon I’m driven from bed again.
Searched up ‘strategy to stop repetitive behavior compulsive’ at 130am:
Sleep anxiety is a feeling of stress or fear about going to sleep. Anxiety is the most common mental health disorder in the U.S. Research suggests that most people with mental health disorders like anxiety also have some form of sleep disruption. Treatments may include therapy, better sleep hygiene or medication.
“Sleep Anxiety,” Cleveland Clinic
Drop-off is the new normalI took the kids to school again. We listened to KCSM, the Bay Area’s Jazz Station, on the short drove to school. my daughter said it reminded her of Grandma’s house, where indeed there is always jazz on the stereo. I told her about how I grew up listening to jazz on the radio.
Good Things Are HappeningMy walking is definitely improving. Soon, I hope I can go to KFJC on my own. I’m working up to it. First, I got to get a good night’s sleep.
I’m falling in love with the new cat.
Subscription PackageWe subscribed to The 2025 season of @calperformances. We’re going to see @therealmambazo @SamaraJoy99 @AntonioDrumsX @ZakirHtabla. I’m very excited.
3D Opera GlassesBack in the day I saw Phillip Glass perform “Monsters Of Grace,” directed by Robert Wilson in Zellerbach Hall, and it was very spectacular.
Originally, Wilson intended the fantastical scenarios he envisioned to actually be staged. When he realized the enormous costs and effort that would be involved in performing such a project (which included such tableaux as a gigantic hand pulling a sword from the ocean and a helicopter flying over the Great Wall of China), Wilson and producer Jed Wheeler began looking into creating the entire visual end of the production with 3D computer graphics. …
One major drawback that seems to have been the project’s main flaw was the length of time required for creating and rendering the animation. It took twenty animators almost a full year to complete the footage based on Wilson’s original intent. Wilson, who has been described as liking to maintain great control over his projects and to change details at the last minute, gradually grew frustrated upon seeing how much time was required to change the animations, and ended up distancing himself from the animators. This led to a final product that, from his standpoint, was unpolished. In an interview with the New York Times, he remarked, “This is like being a dog with a litter of puppies that went away six weeks later. . . . Here I was working with people who didn’t know my work, in a medium I didn’t know.”
“Monsters Of Grace” Wikipedia page
We won’t be seeing that again.
We subscribed right after they announced the schedule, which reserves us a place in line to get ADA seats.
Back on the exercise bikeNew Coffee RigA new espresso machine is coming – the Lelit Victoria. It’s an updated version of the 30-year old machine I use currently.
Back And ForthThe new therapist is doing eye movement therapy, called EMDR.
Eye movement desensitization and reprocessing therapy, commonly known as EMDR, is a mental health therapy method. EMDR treats mental health conditions that happen because of memories from traumatic events in your past. It’s best known for its role in treating post-traumatic stress disorder (PTSD), but its use is expanding to include treatment of many other conditions.
“EMDR,” Cleveland Clinic
Winning3:33I’m winning the war on anxiety, because I won’t have it any other way. Sleep anxiety is making things difficult.
I drove to Emeryville and get my haircut from Anjela at New Florence Salon.
A few days ago, out of-control thoughts and chains of compulsive behaviors drove me from bed 10 times. The next night, I slept just fine, as if nothing was the matter. Then the night after that, I woke at 3:30 AM, and couldn’t get back to sleep.
Need to ride my exercise bike, to get out of my head and into my body.
Thanks for listening, catch you next time. Have a good day.
SelfieChapter List* 00:00:00 – Antonio Sanchez Bird Man Live * 00:00:13 – A word about Hoppin Hot Sauce * 00:00:26 – Intro * 00:01:17 – Show ID * 00:01:51 – Restless Sleep Anxiety * 00:02:58 – Repetitive behavior cycle * 00:06:04 – Taking the kids to school * 00:06:28 – We listen to KCSM * 00:09:09 – Good things are happening * 00:10:02 – Cooking while disabled * 00:11:23 – Walking improvements * 00:14:12 – Falling in love with the cat * 00:15:42 – Subscribed to Cal Performances * 00:16:19 – Monsters Of Grace opera * 00:18:59 – Ladysmith Black Mambazo * 00:19:31 – Samara Joy * 00:19:55 – Antonio Sanchez Bird Man Live * 00:21:16 – Zakir Hussein Masters of Percussion * 00:22:10 – Subscription ticket packages * 00:22:57 – Ordering early for ADA seats * 00:23:54 – Back on the bike * 00:24:53 – Lelit Victoria new espresso machine * 00:26:09 – Eye movement EMDR therapy * 00:27:04 – Got a haircut * 00:27:29 – Winning the war on anxiety * 00:28:11 – Sleep anxiety * 00:29:41 – Outro
Getting through anxiety one day at a time, one step at a time, putting myself out there. Slogging through.In the newsParis Promised the Olympics Would Be Accessible. The Clock Is Ticking.Article: Paris Promised The Olympics Would Be Accessible
The city, which put inclusivity at the center of its bid, has improved access for people with disabilities, but with the opening ceremony about 12 weeks away, obstacles remain.
Slogging throughProcessing what’s happeningOne of the hardest things about Multiple sclerosis is wrapping your head around it. being cool with the things that are happening to you in the processes that you are part of accepting them is very difficult. maybe it doesn’t have to be. in Buddhism they say that all life is suffering, but some of it is unnecessary.
Maybe it’s important to accept myself and what’s happening, that it is okay that you are okay it has been okay it is okay and it will continue to be okay.
I am thinking about that because I am going to start talk therapy again
I’m getting some relief from anxiety. taking it easy
Last night I made rice and beans and we had it with eggs and salad
Bailey, a female wrestler on smackdown from San Jose CA
It rained on free comic book day
anxious feelings are difficult to control
back pain creating a nerve tingle in my groin and knee
difficulty sleeping
I play an impartial judge in mayhem special. Jersey girl and max levels
I drove to the coffee shop and didn’t give up until I got a cappuccino – twice
drove to Oakland and pumped my own gas
MayhemMax level picked me up at my house and drove me to kfjc where we broadcast the snap crackle pop special with Jersey Girl. shout outs to max level Jersey Girl circumference, Robert Emmett and the sandman
everybody played a role
radio helped anxiety – in the moment
New Therapistnew talk therapist began. we spoke about the bad anxiety i was feeling, the anxious thoughts and the need to tell the doctor that the medication was not relieving me. my therapist has worked with disabled people before, and some of them could not communicate, so they had a hard time advocating for themselves.
insomnia. anxiety. panic when I liey down. the numbness inside my head becomes my focus, and I obsess over it. eventually I calm myself enough to lie down, then the cycle begins anew
I drove my family to a baby shower in Dublin for one of my wife’s coworkers
Selfie
In “Anxiety Medication Strategy Session,” changing opinions on music, bouts of anxiety, recent publication in Identity Theory and Disturb the Universe, family life changes, increased mobility, and resumption of some duties.Last Old Guy Or First New Guy?Recently, I read a tweet by flea, and I was forced to reconsider:
https://twitter.com/flea333/status/1774601328502898936https://youtu.be/QEgalcH_-b4?si=q7ZD6rdC4ZhfnwbY&t=1762Pat Matheny on German jazz criticsPat Matheny was a jazz guitarist that my stepfather really admired. For that reason, in my youth I stayed away from it. In general, I mind it less now that I am older, but I generally don’t seek it out.
Sometimes, a random tweet by flea will turn decades of tradition on its head, and I’ll be forced to reconsider. In an interview with Rick Beato, Pat Metheny had this to say about musical invention:
German jazz critics are great. They’ll come right out and say the most direct thing. I had a guy say to me– you know, not that long ago, maybe 10 years ago– “Are you the last old guy, or are you the first new guy?” and the thing is, I bet you know what he means too, right? Yeah, of course.. I mean, for me, both.
Well, I don’t know, I mean, you know, it’s hard to be objective about your own thing, but what I will say is that, for me, there was no option other than trying to invent stuff, yeah.
Anxious feelingsI had a bout of anxious feelings and panic. I reached out to my care team and spoke over video and in-person at the office with my doctor the next day. We think it could be related to switching off of nerve-pain medication post-surgery.
Marinated Spicy Chicken Thighs RecipeOver at Hoppin Hot Sauce, there’s a new recipe for Marinated Spicy Chicken Thighs marinated in yogurt, salt, and Hoppin Hot Sauce.
“Vern” published in Identity Theory
I’m happy to announce the publication of “Vern” in Identity Theory, selected by Micro Editor Vic Nogay. Many thanks to the publisher Matt Borondy.
“Vern” is a 50-word story about the workplace injury sustained by my great grandfather, T. Vernon Smithson, at the cotton gin in Mount Juliet, Tennessee.
Identity Theory is an online magazine of literature and culture publishing interviews, prose, poetry, art, commentary, and other inventive explorations of humanity since 2000.
“Vern” published
https://twitter.com/IdentityTheory/status/1783167798942023891Reading “Vern” for Identity Theory“Hot Day” published in Disturb The Universe
I’m happy to announce the publication of my eco-disaster poem, “Hot Day” in Disturb The Universe Magazine, April 23, 2024. The poem takes place in a decomposing world in thrall to “inevitable circumstances/ That can’t be avoided.”
According to their website, “Disturb the Universe aims to share writing on the edge from writers strongly inhabiting their voice.” Many thanks to Editor in Chief Skaja Evens.
“Hot Day” published
Non-stop publication action Is disguising the inevitable sinking feeling but it has to be in there, somewhere.
Domestic EmptinessFor the first time since 2020, my wife is back to the office four days a week. It’s probably a big change for her. She comes home bursting with stories of her new gig. She seems very stimulated, and I think that’s a good thing. Our home is empty during the day for the first time since we moved from San Jose.
More walkingI’m in my wheelchair less and less, and walking more. This week I went to the library on my own, walking in and out from the parking lot, trying to build stamina. I went to the doctor without the chair. I use it when we go to the market, any time when I’ll have to do extended walking or to carry things.
Resuming Some DutiesLast week, I picked up the kids from school and picked up the vegetable box – something that I haven’t done more than once or twice in the past year.
I made an appointment to get a hair cut in a couple weeks, and it’ll be my first time going to the hair salon since the beginning of last august, almost 9 months ago.
SelfieAnxiety Medication Strategy Session SelfieChapter List* 00:00:29 – Intro * 00:01:12 – Pat Metheny interview * 00:03:06 – Anxiety * 00:03:53 – Hoppin Hot Sauce jingle * 00:04:00 – Marinated Spicy Chicken Thighs Recipe * 00:07:10 – roasted golden beets * 00:07:40 – new publication * 00:09:31 – my wife is back to the office * 00:10:40 – walking more, wheelchair less * 00:11:21 – chore duty * 00:11:51 – consumer goods incoming * 00:12:33 – reduced medication * 00:14:16 – last week was my birthday * 00:14:28 – pizzeria da laura accessible dinner * 00:15:09 – hotsy totsy: good drinks, not accessible * 00:17:12 – dinner at parent\’s house * 00:18:12 – urgent care therapy session * 00:20:57 – anxiety medication strategy session * 00:21:46 – waking up with anxiety * 00:22:54 – Outro * 00:24:30 – Who is going to win the NBA playoffs
Featuring updates on Hoppin Hot Sauce inventory, newly published writing, recuperation from surgery, the year’s first barbecue, and a new family pet.Sandman Knows KaleShout outs to the Sandman, who wrote in about kale and he knows more about kale than I ever will. He works with kale as a kaleologist.
Extra Hot ShortageBuy Extra Hot Hoppin Hot Sauce from Amazon as we will be out of stock on Extra Hot in the near term, and once Amazon runs out, we’re out.
PublicationInstant Noodles published my 50-word story “CYBERTRUCK DENTAL, S. DE R.L.”
The link to the stuff that is published, along with what’s upcoming is on the Publications page of my author site jwh.whatsthematterwithme.org
The sinking feeling you have after publication is the same one you have after you have an art opening. Everything returns to normal. Banal, mundane, normal.
But in fact, I did accomplish something. What I set out to do: become a published writer.
The thing rolls on, even: a second 50-word story will be published in a different publication next week. I recorded myself reading it in a video at the request of the editor.
Surgery UpdateLooking at the calendar, it’s been about 4 weeks since I had surgery. I’ve reduced my medication down to the pointt where I’m almost completely titrated off of the pain medications I’ve been taking for months.
New New CatWe’ve got a new cat at the house. It’s a two-month-old kitten that’s part-lynx. It’s in quarantine for the next 10 days, maybe more.
BarbecueI lit the barbecue for the first time this year. Now that my meds are reduced, I feel like not as scary to grill. For the first go-around, I made skirt steak and eggplant
Last night, I grilled a pork tenderloin with whole grain mustard, brown sugar and Shaoxing wine. We ate it with steamed new potatoes and boiled carrots.
HollywoodWe ordered a new juniper tree, a ‘Hollywood Juniper’ juniperus chinensis var. kaizuka.
RemodelingAfter launching my writer’s website, I’m remaking the whatsthematterwithme.org website with the same theme. If it all goes well, I could see myself redoing HoppinHotSauce.com the same way.
Gary in the pressInstallation view of Gary Cannone’s Manet/Degas at Compound Yellow, Oak Park, Illinois (photo Jonas Müller-Ahlheim)Past WTMWM? interview subject Gary Cannone got a great write-up by Lori Waxman in hyperallergic about his solo show at Compound Yellow in Oak Park, IL. Check out the Gary Cannone Interview Special here.
Gaining equilibriumFor the first time in months, I got up from the couch by myself. A couple of times
SelfiePublication Barbecue selfieChapter List* 00:00:00 – Intro * 00:01:03 – Hoppin Hot Sauce Jingle * 00:01:20 – Shout outs * 00:02:01 – Instant Noodles Publishes \”CYBERTRUCK DENTAL, S. DE R.L.\” * 00:02:34 – The feeling you have after publication is the same one you have after you have an art opening * 00:03:17 – another story will publish next week * 00:03:35 – Writing site at jwh.whatsthematterwithme.org * 00:04:03 – RF Rhizotomy recovery update * 00:06:05 – Tapering off habit-forming medications * 00:07:08 – We have a new cat * 00:09:03 – First barbecue this year * 00:10:15 – The Way I Grill Charred Eggplant * 00:12:42 – New Juniper Tree * 00:13:43 – Remaking whatsthematterwithme.org * 00:13:55 – gary cannone hyperallergic writeup by lri waxman * 00:14:35 – getting up by myself * 00:16:11 – Outro
Period of ChangeUndergoing a period of change: I had surgery, I got published and I went on vacation. Plenty of new music reviews in this episode.
A wordWhat’s The Matter With Me? Podcast is sponsored by Hoppin Hot Sauce. Order it on Amazon.
JWH Live!Writings By John Winfield Hoppin is live, because my editor said I needed a writer’s website. I think it’s pretty nifty..
Selfie EdictSubscribers get the selfie for as long as we all live. It’s a lifetime subscription
Shout outshttps://twitter.com/MarchandsPetRat/status/1779926937177358503Shout outs to Marchandspetrat, hockey s-poster living with MS
Shout outs to Rocky, Cousin Eric
Gotta write up questionsNerve Bumps (A Queer Divine Dissatisfaction) by Dax Pierson
Upcoming interview subject Dax Pierson
Shout outs to the Sandman who turned me on to James Wavey Snowy Beach, which was added recently at KFJC.
Psychedelic hip-hop from San FranciscoJames Wavey Snowy Beach by James Wavey
Publication Dream Comes TrueI was accepted on a piece of writing, and for the first time I made a signed agreement. Follow JWH Live! to hear more about the writing.
In the days before surgeryIn the run-up to surgery, in a lot of trigeminal neuralgia pain, I increased my dosage and I felt like it was too much. Trying to even things out, I reduced by 25% overall, and it helped return me to the land of the living.
No coffee, no ibuprofen.
On a day when I would usually be recording, I went to the hospital to have surgery, my third RF Rhizotomy and fifth neurosurgery on my trigeminal nerve overall. I had two MVD (microvascular decompression) surgeries to begin with. Recovery is much easier with rhizotomy. MVD literally bores a hole in your skull, and it takes a lot of recuperation to heal. Hospital stay from rhizotomy can be as short as a few hours.
New tunesIn advance of surgery, maybe to take my mind off it, or to give myself something to look forward to, I bought some tunes.
Opera Glossolalia Spontaneous Musical Invention by Thomas Buckner sings Robert Ashley
Robert Ashley is a composer of 1980s opera. There’s a lot of talking in the libretto. The gatefold record comes with a cool book with photos. I really like the Recital label because they have interesting packaging. The record is one of 350.
Instructions?Whiplash by Asha Sheshadri
This record is like sound art, but at the same time it’s a record. I’Layered, specific, related to site. Like getting a bunch of jumbled-up instructions for a treasure hunt, cryptic. Edition of 200.
Chewing GqomThe Gqom Trilogy by DJ Scriby // DJ Marillo // DJ Skothan //
Gqom is known for its beats which have a minimal, raw and repetitive sound with heavy bass. It is mainly described as having a dark and hypnotic club sound. The style of beats does not use the four-on-the-floor rhythm pattern which is often heard in other house music.
“Gqom” Wikipedia article
Digging this record – I’m new to Gqom, but I like it. The release is by three different DJs, a triple EP.
Drunk in Love by Elvin Brandhi & Lord Spikeheart
This is far out. File under extreme vocal performances. The feeling is metal, but the sound is electronic. Tense, spastic. Questionable in a good way, challenging material.
NumbNow I’m back from surgery and my face feels different. Talking and eating and I’m sure other things that I’m not noticing are affected. Familiar disassociation after surgery.
It’s a matter of deciding how I feel about the things that are different. First, I have to accept them.
Updating the mapAfter surgery, it takes time for my body to properly calculate changes in sensation, and adjust the body’s size map accordingly.
In tuneThe piano is tuned
Out on my ownDrove to Oakland by myself and went to a couple of friend’s houses for about 3 and 1/2 hours. It was the first time in 16 months.
Chapter List* 00:00:01 – Intro * 00:00:27 – You are tuned in * 00:01:33 – Becoming a published poet * 00:02:54 – Shout outs * 00:05:16 – James Wavey Snowy Beach * 00:06:36 – Preparing for surgery * 00:09:50 – I bought some tunes * 00:10:11 – Drunk in Love Elvin Brandhi, Lord Spikeheart * 00:11:07 – The Gqom Trilogy DJ Scriby, DJ Marillo, DJ Skothan * 00:11:40 – Recital Records * 00:12:18 – Back from surgery * 00:13:05 – I\’ve Had 5 Surgeries for Trigeminal Neuralgia * 00:14:16 – Accepting Differences * 00:14:47 – Learning to eat again * 00:15:29 – Redrawing the size map * 00:16:23 – Family road trip * 00:17:06 – Great Wolf Lodge, Manteca * 00:18:24 – Easy Accessible Road Trip * 00:20:04 – Children\’s Resort * 00:21:00 – Sacramento Embassy Suites * 00:22:26 – Wheelchair Hike: Dave Moore Nature Area * 00:24:04 – Crocker Art Museum * 00:26:12 – Con Air review * 00:28:00 – California State Capitol Vist * 00:28:43 – Saigon Oi in Sacramento * 00:30:59 – Retroactive Records in Suisun City * 00:31:30 – Larkspur * 00:31:43 – Farmshop family dinner * 00:33:06 – Touring Sausalito * 00:34:03 – Drove myself to Oakland * 00:34:56 – Physical Improvement * 00:36:30 – Piano tuning * 00:37:10 – JWH Live! * 00:38:33 – Outro
In “Drugged Out,” a short episode featuring wine delivery, toilet paper shortage and trigeminal neuralgia pain medication.Long TimeSubscribers get the selfie for as long as we all shall live. It’s a lifetime subscription
Green fluidCuts in my hands have been getting infected and filling with green goop
In Our CupsWe got the wine delivery, man, and the wine deliveryman was in his 20s, maybe his mid-20s, and he was really upset about global warming. “Things aren’t l really pleasant anymore,” he said.
I felt for him. “I feel for you,” I said
Toilet Paper ShortageWe still have a case of Bulgarian toilet paper that has no perforations and ripping it feels like tearing up someone’s college application, or well-qualified resume printed out on nice paper.
Remember back in 2020, when there wasn’t toilet paper? We bought a case of Bulgarian toilet paper and it was like riving a sheet of Bristol board to rip a sheet off. There were no perforations, it was 80% normal size so it didn’t fit on the roll,
Thing I KnowI watched the “Taylor Swift: Eras” movie with Koko, so I know about Taylor Swift now. Not sure what, but I know it. The movie is long, but not as long as “Killers of the Flower Moon.” She gets into slang patterns thata made me uncomfortable. To get it going, I had to figure out my Disney Plus login credentials, and that, in itself, is a big bonus.
Electric Wire Buried In FleshI’m drugged out!I experienced severe face pain once before bedtime, and then many times (a couple dozen?) after 4am. I cut out coffee, ibuprofen and started going up on my medicine that day, settling on twice of my usual dosage. That was too much, and I became extremely drowsy and experienced visual, balance and energy side affects. Eventually I settled around 175% of my usual dose, which. for the moment, is keeping the pain away and limiting the worst side effects.
Surgery is next week, my third RF rhizotomy. I knew this treatment could recur and that it was not necessarily permanent. Let’s hope the third time’s the charm.
Chapter List* 00:00:00 – Intro * 00:00:22 – Shout outs * 00:01:08 – Jingle * 00:02:00 – “Taylor Swift: Eras” movie review * 00:02:13 – Bulgarian toilet paper * 00:04:42 – Trigeminal neuralgia returns * 00:07:45 – Outro * 00:08:44 – Wine delivery
In “Spring Concert,” an incidental return to Dry Marchuary, a chapbook’s worth of poetry and the school’s Spring Concert.From chaos comes order One way to enjoy Hoppin Hot Sauce is “On Pasta”.
In the midst of near-total chaos, small rituals ground us, nourishing both body and soul.
“On Pasta” at HoppinHotSauce.com
Shout outsShout outs to schwabino kickin fatal aikido kung fu karate they bout to find your body you better ask somebody mymedia designer.com tell a friend to tell a friend about my media designer
See for yourselfSpring Concert SelfieMy hair is long as it’s been since 2009! See for yourself above. Subscribers get the selfie e-mailed to them, they don’t even have to do anything, just lay there.
It’s an NFT, it’s collectible, it’s a blockchain. Blockchain sounds like a necklace to me
Lost Weekend Here I ComeThe wine delivery is coming tomorrow. In the meantime, we’ve been back to “One Or Two Beers Dry January-February-Marchuary” mode, just for the past few days. Long live one or two beers Dry January
To go in your chapsHippie chapbooks
A chapbook is a small publication of up to about 40 pages, sometimes bound with a saddle stitch.
“Chapbook,” Wikipedia
I collected what poetry I have written since I moved here in 2021. It’s over 45 pages, and Wikipedia says it’s enough to make a chapbook.
Let my children play musicOnce upon a time in the auditoriumI went to the San Leandro Unified School District Spring Concert in my wheelchair, to see my son play trumpet in the spring concert.
Once upon a time in the auditoriumChapter List* 00:00:00 – Intro * 00:02:47 – From chaos comes order * 00:03:21 – Shout outs * 00:04:10 – Long Hair * 00:05:23 – Wine delivery * 00:05:58 – Poetry Collection * 00:06:57 – Chapbook * 00:09:04 – Writing in Google Keep * 00:09:43 – Spring Concert * 00:14:27 – Attending The Concert
In “I Drove,” getting reacquainted with driving, where did kale come from and borscht out the wazoo.Iconic trioAt Breakfast is a great time to have Hoppin Hot Sauce.
Just like the iconic trios of Larry, Curly, and Moe, or black, white, and grey, or even the Roman numerals I, II and III, eggs, English muffins and Hoppin Hot Sauce form an unforgettable trio that’s sure to become a favorite in your kitchen.
Shout outsShout out to Jersey Girl and Max Level
We’re going to broadcast a game show in May
I’ll be the score
No matter whatSelfieSelfie or no selfie the email is going out – grab it while you are still living, go to whatsthematterwithme.org and click subscribe
I drove Two lane blacktopI drove my van. First, around the block. Next, to the library, where I saw men with nowhere else to go walking around the library grounds in the rain an hour before opening. Finally, I drove to Oakland, up 580 and to Piedmont Avenue, to Cato’s Ale House. I photographed it from my parking space and texted it to my buddy, lamenting that it was too early for beer. He replied, “It’s never too early for beer.” It’s good to have friends. Shout out to Matt. Turning around, I drove back home.
Where did kale come from?According to the “kale” page of Wikipedia\, Kale came to America in the 19th century from Croatia, brought by USDA botanist David Fairchild, who did not eat it, who detested cabbages of all sorts.
BorschtWe have a freezer full of borscht. Chock full of borscht, we have borscht coming out the wazoo. My aunt and uncle were in town and we had them over for lunch. We ate borscht.
Two lane blacktopChapter List* 00:00:00 – Intro * 00:00:42 – At Breakfast * 00:01:55 – Shout outs * 00:02:56 – Selfie or no selfie * 00:03:20 – I drove my car * 00:04:38 – Fear of driving * 00:05:41 – Men with nowhere else to go * 00:08:16 – Slash at the Oscars \”I\’m Just Ken\” * 00:09:41 – Where did kale come from? * 00:12:11 – Dax Pierson interview upcoming * 00:13:07 – Borscht * 00:13:35 – Aunt and Uncle ate borscht * 00:14:09 – Losing * 00:14:34 – Outro
In “Buying A Used Wheelchair,” breaking my wheelchair and buying a new one on Craigslist, more record shopping, cooking borscht and getting accepted for publication.Every week we order pizza from the place in town. On the day after, for lunch I eat cold pizza with Hoppin Hot Sauce on it.
(Hoppin Hot Sauce jingle)
Those who say don’t know & who know don’t sayBuying a used wheelchair selfieSubscribers get the selfie and the show notes e mailed to them, and I don’t know what they do with them
Record shoppingI went record shopping at Amoeba and it turned out to be a pretty good score:
- Something Is Wrong (Vintage Recordings From East Africa)
- Fiona Apple, “Tidal”
- Black Top Blues-a-rama, Volume 2 Live at Tipitina’s, New Orleans
- J Dilla, “Donuts”
The record store person gave me “the nod”
Terminal EventI broke the arm off of my wheelchair, with a bang. The manufacturer was out of stock, but I needed to find a replacement. I got on my computer and I searched eBay and sfbay.craigslist.org. craigslist came through for me
Cooking While Disabled We made borscht. For the second year in a row, we used this Serious Eats recipe for Hot Ukrainian Borscht (With Beets, Beef, Pork, and More)
AcceptedAfter an uninterrupted months-long streak of many rejections, a few different editors wrote me to let me know that my writing was accepted. All in all, a piece of microfiction (in this case, a story of exactly 50 words) and two poems. It’s very exciting to turn the corner on this project and move from submission to publication.
Chapter List* 00:00:00 – Intro * 00:05:04 – Subscribers get the selfie * 00:06:01 – Record shopping * 00:13:36 – Terminal event * 00:21:08 – Borscht * 00:27:58 – P.T. * 00:29:30 – Outro
In “Swift Correction,” Taylor Swift wrote all the songs, hoping everything’s okay, and a sprained knee. But first, I’m programming robots to do my bidding! I can feel it– success is near at hand.Automaton II spent all day working on an automation to send posts created on the Hoppin Hot Sauce blog out to the mailing list automatically. Automations help multiply my actions which is important so I can conserve energy and avoid fatigue that comes with MS. Hopefully, I can stay in better touch with the hot sauce audience.
Automaton IISwift Correction selfiePreviously, another automation I made sends new episodes to our What’s The Matter With Me? Podcast mailing list. Subscribe today. Subscribers get the selfie along with show notes.
Cool thingHoppin Hot Sauce is a disabled owned & operated businessShoppers at our Amazon store support disabled-owned business
Hope everything’s okayAbout the time when we were driving and we saw two fire trucks and an ambulance.
My wife said. “I hope everything’s okay.”
To which I replied, “Clearly, it isn’t.”
Correction: Taylor Swift wrote all the songsCorrection: Taylor Swift wrote all the songsMy wife texted: “The standard edition of 1989 (Taylor’s Version) comprises 21 tracks: re-recordings of the 13 songs from the standard edition of 1989, re-recordings of the three bonus tracks from the original deluxe edition, and five previously unreleased “From the Vault” songs that were written for the 2014 album but excluded from the final track list. https://en.wikipedia.org/wiki/1989_(album) I don’t think the Taylor’s version are covers.”
Of course, she was right. I tried to explain it in the episode, but it’s really very complicated.
Path of painThe path of pain began when I sprained my knee. Unfortunately, I fell in my bathroom, and bent it the wrong way. After that, I was leaning heavily on my cane, which caused soreness in my left pectoral area. The pain traveled from there down my arm, stopping in my bicep, forearm, wrist and hand.
It was painful, like sitting cross-legged but the heel goes outward instead of inward. The bruise was on the inside of my knee. Recovery proceeds, slowly, haltingly; I’m trying to stay off of it as much as I can.
Bueller… Bueller…I’m practicing for the CBEST California substitute teacher exam.
Correction: Taylor Swift wrote all the songsChapter List* 00:00:00 – Intro * 00:01:43 – Subscribe to get the selfie * 00:02:27 – Taking the selfie * 00:03:18 – I created some automatons * 00:06:22 – Conserving energy * 00:07:06 – Hoppin Hot Sauce Jingle * 00:07:24 – Hope everything\’s OK * 00:08:49 – Taylor Swift Correction * 00:14:31 – It happens every night * 00:18:28 – The Path Of Pain * 00:19:26 – Substitute teacher exam * 00:21:43 – Outro
Taylor Swift
Automaton
Hoppin Hot Sauce
MS (Multiple Sclerosis)
Trigeminal Neuralgia
Podcast
Automation
Pain Management
Disability
Substitute Teacher Exam (CBEST)
In “Wheelchair Dig,” a dinner party, shout outs and a family trip to the record store. Amidst discussions on music finds, including Eminem and Taylor Swift covers, touching on the disappearance of People’s Park, radio’s outreach to marginalized communities, and the place of ‘inspirational’ content in disability culture.Canvas for hot sauceWe had our neighbors over for dinner last night and we made pulled pork sandwiches and coleslaw. The kind of thing just perfect for hot sauce.
All-KFJC ShoutsShout out to the sandman who wrote in for a fresh fish recommendation in the South Bay. So I gave up all my spots to him?
Shout out to Jersey girl and Max level
There’s only one waySubscribe and get the selfieWheelchair dighttps://www.flickr.com/photos/caltex98/46968846481/Amoeba Records BerkeleyWent record shopping at Amoeba in my wheelchair with the family
Findshttps://www.youtube.com/watch?v=X3_SPhBqG2wI found a 3cd set of Codona on ECM used / don cherry nana vasconcelos and collin wallcott. It’s proto-‘world music’
https://www.youtube.com/watch?v=Z5KiSu1-2komy son got eminem’s “Marshall Mathers 2”. he is having emotional problems, so I see why he is connecting with this.
https://www.youtube.com/watch?v=2JgvVfOfoWIMy wife and my daughter went in on the taylor swift covers cd taylor’s version – electropop, powerful music – the frequencies are on blast, it peels your eyelids back and curls your eyelashes. plenty rizz, more drip than expected, pretty obvious why she’s a spectacular pop star
people’s park is gone – three cops guarding the shipping containers blockading it – bad vibes
Inspiration to who?https://www.youtube.com/watch?v=8K9Gg164BswIs There A Healthy Place For ‘Inspirational’ In Disability Culture? Andrew Pulrang
Disabled people have complicated relationships with a lot of words. But the one word other than “disability” itself disabled people feel most intensely about may be the word “inspirational.”
Andrew Pulrang
BroadcastDigging in the cratesThe radio and other broadcast media is egalitarian in the way it approaches disabled people and unpopular people. The voice on the radio is the companion that they have. Homeless people, weirdos, prisoners, anyone who tunes in can listen
On that note, email me
Digging in the cratesChapter List* 00:00:00 – Intro * 00:01:01 – We had our neighbors over * 00:01:30 – Hoppin Hot Sauce Jingle * 00:02:03 – Shout outs * 00:02:10 – south bay fresh fish market recommendations * 00:03:35 – Jersey girl and Max level * 00:04:23 – subscribe and get the selfie * 00:05:31 – record shopping at amoeba Berkeley with the family in my wheelchair * 00:08:00 – i found codona trilogy on ecm 3cd set used * 00:10:54 – my son got eminem * 00:13:25 – taylor swift taylor\’s version cd * 00:18:11 – people\’s park is gone * 00:20:20 – being inspiring is a drag * 00:24:25 – voice is on the radio * 00:25:46 – outro
People’s Park
Berkeley
Disability culture
Inspirational
Andrew Ang
Ella Young
Radio broadcasting
Amoeba Berkeley (record store)
Hoppin Hot Sauce
Record shopping
Multiple sclerosis
Trigeminal neuralgia
Eminem
Taylor Swift
Jazz
Hip hop
In “The Music Episode:” “Let’s Paint TV,” Ludacris color story meme, and keeping the kids in their rooms by tuning in to Day Of Noise on KZSU.When life gives you shoes.. make shoeanadeThe new shoes that I got in the last episode are working out. They’re made by a company called Drew
I swear it’s trueSemi-transparent guitarist playing a record store “in store” gig with red paint scrawled all over its faceThis is the music episode
Spicy Roasted Pistachio NutsThe Spicy Roasted Pistachios with Hoppin Hot Sauce Extra Hot came out but there was one problem – i couldn’t stop eating them – we’ll eat them at the Super Bowl, if they last that long
I’m writing an email blast about them, and I made some cool collages, like this one, of the guy who coined the term ‘umami’
Umami means “delicious taste.” in Japanese.
The Struggle Is RealIf Sisyphus was alive today, he could have a podcast about going up the hill and rolling the boulder over and AI would say it was a multi-faceted discourse.
Chairpiphany It helps when I search for stuff using my wheelchair not walking around. BC then I actually look around, instead of focusing on walking, trying not to fall, as usual.
Berkeley Rock Starshttps://www.youtube.com/watch?v=CnQ8N1KacJcI got a fragment of The time of your life Green Day song stuck in my head, but only the title, and even that I got wrong.
Not Like The OthersIf you’re like, “This certainly isn’t like another podcast,” make sure to subscribe to get the selfie.
Here Be The River Of PainChanges in the weather: the atmospheric river pointed at California is screwing with my face a bit. Stinging me, stabbing me – out of nowhere.
Ultimately Very Listenablehttps://www.youtube.com/watch?v=CFEY7Aw7S7s&t=1848sThiis is from “Let’s Paint TV,” hosted by the Los Angeles artist John Kilduff. Once the novelty of his multidisciplinary multitasking wore off, which, I admit, took a while, I found it soothing and ultimately very listenable. He has an etsy store, with lots of items for sale at a very reasonable prices considering the obvious talent involved. For real – I mean, could you do this? I couldn’t, and I appreciate him for what he has done.
Appealing Color Story Hip Hop Rap Ludacris MemeI created the Ludacris meme “Mauve birch”
My Children Were On LockdownIt was the day of noise on KZSU. The 24-hour live marathon of noise and experimental sounds kept the kids out of the main room of the house, in their rooms with the doors firmly shut, pretty much all day.
Keeping It GoingOn the day after Day Of Noise, my daughter had a playdate. While it was going on, I put on Escalo Frio by Otto Von Shirach which was more of the same. Escalo frio means shiver in Spanish. The record features an appearance by Matmos. Before putting it on I told my wife it was dance music and I admit, that was misleading.
No Test DriveAbilities expo isn’t happening in the bay area this year but it is happening in Los Angeles in mid March. I can get another of the same wheelchair that I already have, however I would like to have a chance to look at the options in a hands-on way.
The Music Episode SelfieThe Music Episode SelfieOne More TimeThis is the music episode.
Semi-transparent guitarist playing a record store “in store” gig with red paint scrawled all over its faceChapter List* 00:00:00 – Funeral song * 00:00:52 – ATMOSPhERIC RIVER TRIGEMINAL NEURALGIA * 00:01:13 – New Drew Shoes * 00:03:05 – This is the music episode * 00:03:59 – Ikeda who coined the term \’umami\’ * 00:05:13 – HOPPIN HOT SAUCE jingle * 00:05:14 – If Sisyphus was alive today * 00:05:44 – Search by wheelchair * 00:06:54 – \”Good Riddance\” Green Day * 00:08:05 – Get the selfie * 00:10:10 – John Kilduff / Let\’s Paint TV * 00:13:44 – Ludacris meme \”Mauve birch\” * 00:14:44 – KZSU Day Of Noise 2024 * 00:16:35 – Escalo Frio Pplay Date * 00:18:01 – Abilities Expo isn\’t happening * 00:19:45 – big rundowwn
SEASON 8 EPISODE 4“NEW SHOES 2KXXIV“In “NEW SHOES 2KXXIV,” I get new shoes for the first time in years, piece together a classy color scheme of colors with gross-sounding names and austerity in the UK impacts people with disabilities.
Through this episode, I invite you to join me in unraveling the complexities of this multifaceted experience.
Hoppin Hot Sauce Toasted Pistachios1 cup pistachios, 2 teaspoon whole cumin seed, 1 teaspoon aji-no-moto, 1 Tablespoon Hoppin Hot Sauce, salt, olive oil. Stir together and lay out on a baking sheet lined with a silicone or parchment baking sheet.
Place in a 350 degree oven for 3 to 4 minutes. Stir, and return to the oven for 3 or 4 minutes, until the cumin is fragraant.
Let them cool for a few hours. Once I got going, I was unable to stop eating them even for a sip of beer.
Shout outsShout out to Matt who was into the blood episode – we watched the playoffs with our families
Geographical Shout outsShout outs to the cities, towns and countries that listen to this podcast
Green Kitchens Sicken MillionsColor scheme made up of Gross sounding colors like taupe and puce
Mauve birch get out the way
Don’t Pull The Trigger On A Face TattooReminder to the listeners as an alternative to getting the facial tattoo is to subscribe to the newsletter
If I were ever to have an advertiser maybe a good one would be tattoo removal
Cursing For KidsSwearing nursery rhymes like Little Miss muffet sat on her motherfucking tuppet eating her curds and way shit
Stompin’ in my Drew Force V
I got new shoes –
at walk rite for life
who set me up with a custom fit, which I need to fit my AFO inside
Less than total teetotaling“one or two beers half-january” is finally over
Putting us all togetherDue to budget shortfalls, city councils in the United Kingdom are considering cutting assisted living programs and forcing disabled people to move into state-run facilities.
If you want a symbol of this country’s shredded safety net, look no further than Mark in Bristol.
For the past 30 years Mark, who has cerebral palsy, has lived in his accessible bungalow with the support of personal assistants. That care package has enabled the 58-year-old to build a life at the heart of his community: from being a governor at the local school and training as a social worker, to holding a season ticket for his beloved Bristol City football club, “It’s more despair than joy,” he smiles.
From next week, that life could start to disappear. As the latest local authority to strain under growing social care costs and dwindling resources – the city faces a budget hole of £17m next year, expected to rise to £32m in the years to come – Bristol council is proposing a “cost-effective” solution: if a disabled person’s in-home care is not considered “best value”, they could be told to live in a care home instead. It is the stuff of a domestic horror movie: a bureaucrat deems your life too expensive, and you’re forced to pack your bags and spend the rest of your days in an institution.
Frances Ryan, “Think of this: a plan to ‘warehouse’ disabled people. What kind of nation is Britain becoming?” Thu 25 Jan 2024
Laughing FoolsWe had our friends over to watch the football game
I undercooked the beans again but it didn’t matter, we had a good time
Afterwards, my wife and I laughed so much at bedtime, being goofy
“New Shoes 2KXXIV” SelfieChapter listChapter List* 00:00:00 – Intro * 00:00:48 – Subscribe to get the selfie * 00:01:20 – Young Albert Einstein vs. old Albert Einstein * 00:03:32 – Hoppin Hot Sauce Jingle * 00:03:51 – Hoppin Hot Sauce toasted pistachios recipe * 00:06:11 – Shout outs * 00:07:06 – Geographical shout outs * 00:09:44 – A gross-sounding color scheme * 00:10:51 – Alternative to the facial tattoo * 00:11:45 – If I had an advertiser * 00:12:52 – Swearing nursery rhymes * 00:13:41 – New shoes * 00:14:49 – Walk Rite For Life in San Jose * 00:15:10 – I needed a new shoe that fit my AFO brace * 00:18:34 – Dry January * 00:22:16 – Warehousing disabled people * 00:25:52 – We had our friends over to watch the game * 00:26:18 – Outro
In "Arte Povera," Aaron "Wheelz" Fotheringham hits the skatepark in his WCMX wheelchair, we learn how to pronounce 'arte povera' and MS plays third wheel.Shout outShout out to Jersey Girl who wrote in to let me know she was a diggin' on the new theme song@aaronwheelz WCMX GETTIN' RADhttps://www.youtube.com/watch?v=YEXsDdhgX-sAaron "Wheelz" Fotheringham WCMX disabled extreme wheelchair at the skate park. Watching his videos blew my mind and made me proudArte Povera SelfiePut the selfie in and remind listeners to subscribeWhen was the height of the sound effects- do you remember the sound effects? Contact me and I will give you an incredible shoutout that warps time and space due to its epicnessFamous Quotations: Edison & RakimWhen you have explored all possibilities, remember this - you haven't. Thomas Edisonhttps://www.youtube.com/watch?v=6Y1Emb7JyksDon't sweat the techniqueCats are bigWe can always make a social media profile for our pet cat. people love cats!Video art, eh?https://www.youtube.com/watch?v=PQddRHtt0TsThe video that comes up when you search "Arte povera pronunciation" is like a work in itselfDoor UpdateThe ancient giant door of opportunity is wide open, with light shining throughStitches/Staple UpdateI don't have any stitches or staples in my head or anywhere else in my body at the time of this recordingThe stitches fell out in the shower. Just the end of them. They were brownThree's CompanyEveryone who is in a relationship with me is also in a relationship with multiple sclerosis, including my friends and family#1: Ask before you helpUnited Spinal Association disability etiquette guide was a concise read that offers interesting perspective on how to treat disabled people respectfullyAcceptanceacceptance of gravity like acceptance last time - gravity is a constant forceTime's upSee you next week! Don't forget to contact me for a Shout Out in the next episodeWhile you're there, subscribe to get new episode emailsChapter List00:00:01 - Intro00:00:46 - Shout outs00:01:17 - disabled inspiration: Aaron Fotheringham WCMX rider00:05:00 - selfie00:05:28 - to get the full experience, you must subscribe to whats the matter with me?00:05:39 - do you remember the sound effects?00:06:24 - kid\'s baseball league debacles00:08:23 - disabled inspiration: remembering pitcher Jim Abbott00:09:12 - Quote: Thomas Edison00:10:45 - Quote: Eric B. & Rakim00:11:39 - People Love Cats00:11:54 - arte povera Pronunciation Video00:14:45 - Ancient Giant Door of Opportunity00:15:34 - no stitches or staples00:16:38 - Everyone who is in a relationship with me00:19:09 - Disability Etiquette Guide00:22:51 - Outro
In "Ancient Cattle Herders," scientists solve a genetic mystery about multiple sclerosis, Christina Applegate goes on the Emmys, and we read about how acceptance is key.Caused by people with horsesSurely a big deal with far-reaching implicationsScientists crack mystery of how MS gene spread10th January 2024, 08:09 PSTShareBy Philippa RoxbyHealth reporterAn international team of scientists say they have unearthed the answer in the DNA of ancient teeth and bones.The genes which protected our ancestors from animal diseases now raise the risk of multiple sclerosis (MS).The researchers call their discovery "a quantum leap" in understanding the evolution of the disease.And they say it could change opinions on what causes MS, and have an impact on the way it is treated.https://bbc.com/news/health-67917294Surely a big deal with far-reaching implications, but I'm not 100% sure what they are. Something to do with ancient cattle herders, beasts and DNA helixes like you see above.RememberReminder to put the selfie in and don't forget it like last time, remind listeners to subscribeancient cattle herders selfie90s are back: E-MailI sent an “it's good to start the season” emailEmail is big bc the 90s are backEmmy TV MomentChristina Applegate on the Emmys was a huge moment that increased MS consciousnessHaving That Falling Feeling InsideFell in the house Wednesday at 10:45am. my wife was here.I bled a little from one of the stitches, but didn't open up and stopped pretty quick when I iced it so I didn't go to the ER but I think this still counts as a fallIf Christina Applegate did it, we would say, "she fell."If it's the last thing I ever doFellow KFJC DJs reach out to me to take part in stuff, but I can barely make it around my houseMoving to San Leandro added 9 minutes and a bridge to what had been a straight shot from east san joseI'm not walking very well I would be there if I could beI need to figure out my wheelchair transport situationLike a helicopterhttps://www.youtube.com/watch?v=0xdVXV8_yHEThe wall blew off on that 737 Max 9Come up off thatWe got permits for solar last year but we've kind of been dragging our feet with the sales people and this year they want to take our money and now I'm getting calls from the operations departmentNot a wordNo one agrees to publish my poetry and to an extent that shouldn't be a surpriseAcceptance is keyBlog post about disability and acceptance that I thought added valuable perspective to my situation@johnhoppinhttps://twitter.com/johnhoppin/status/1742292361139621970Chapters00:00:01 - Intro00:01:11 - Hoppin Hot Sauce Jingle00:01:25 - Ancient cattle herders brought MS genes00:05:59 - Selfie00:07:14 - “it\'s good to start a season” email00:08:31 - Christina Applegate on the Emmys00:14:29 - Fell in the house00:15:34 - Stuck in the house00:17:48 - The wall blew off on that 737 Max 900:18:58 - I\'m getting calls from the operations department00:20:13 - Poetry publication00:20:52 - Accepting disability blog post00:24:09 - twitter bon jovi00:24:38 - Outro
Welcome to the Season 8 Premiere, "New Pie Cutter"In this episode, "New Pie Cutter" which is a kind of smorgasbord episode, we celebrate the new year, the new season, the new theme song. People get ready, the new episode is here and ready for liftoff. Shout outssShout out to the sandmanContact me on the contact form to get a shout outMaybe the best shout out you'll ever have, or that anyone'll ever haveNew Pie CutterTo avoid a repeat of this year's thanksgiving gorefest, I ordered a metal pie cutter on ebay, with a stainless steel blade and a silver handle -it's here and it's beautiful and sturdyDinner a la GoGoGoGo has limitations as a dating servicean awkward seating arrangementat least they got a name changeTV burialbought a big new tv bc mine crapped out after 15 yearsWhat's causing itDad butt dialed me again and he was like well. what happens is,I keep my phone in my back pocket, i think i butt dialed youMaximsI will try to eat cheese no matter how old it is just to seeA pint is a pound the world aroundCorrect Techniquecorrect and incorrect swallowing techniquesSwallow while staring at your sternumI learned it from KokoWheelchair Fake NewsWith my sonparts on my wheelchair broke in airline baggage"jazzy passport is discontinued"and other lies the wheelchair salesman told meNotesmaking memesyogurt marinadeMix 1 cup yogurt, 2 tsp Hoppin Hot Sauce, and 1.5 tsp saltPour over 8 boneless chicken thighs and rest for at least four and up to twentyfour hoursGrill and eat over rice with some white sauce and extra hot sauce to tasteAI GuyI posted a picture of myself that was made by AI and I put it as my story and a lot of people haven't heard from in a long time contacted me and maybe didn't realize the picture was not of me but it was a hallucination by AIAdmissionthe triage nurse at the hospital asked me if i used to be a wrestlerChapters00:02:37 - shoutouts00:03:02 - I ordered a metal pie cutter on ebay00:04:43 - GoGo has limitations as a dating service00:07:55 - bought a tv bc mine crapped out after 15 yr00:09:33 - Dad butt dialed me again and he was like well. what happens is,I keep my phone in my back pocket, i think i butt dialed you00:10:01 - I will try to eat cheese no matter how old it is just to see00:10:25 - A pint is a pound the world around00:12:38 - Swallowing while staring at your sternum00:15:53 - parts on my wheelchair broke in airline baggage00:21:22 - jazzy passport is discontinued (and other lies the salesman told me)00:21:58 - maxims00:22:19 - Hoppin Hot Sauce Jingle00:22:28 - cooking yogurt chicken (with recipe)00:23:27 - I posted a picture of myself that was made by AI00:24:35 - i\'ve been bleeding all from my head00:25:43 - the triage nurse at the hospital asked me if i used to be a wrestler00:28:57 - pus head experience / pus head the artist
Welcome to "Can You Eat Blood?" the first episode after a break for a few weeks. I had trigeminal neuralgia face pain, so I took a a couple of weeks off. I think AI would say that these are bunch of unrelated thoughts.Shout-outsShout out to the poet Joe Imwalle who called me to thank me for sending a link to his linktree while at the same time insinuating (correctly or not) that almost no one listens to my podcast.Joe played guitar in my high school band and now he's a published poetShout out to Jeremiah Jahnson who gave us a shout out on KFJC, Saturday morning at 8:30Shoutout to Hoppin Hot SauceGray roomWe went on a date at Yonsei Handrolls because the movie was too long to do otherwiseWhat To DoWhen you have MS people are alwaays sending you scholarly articles like this oneCaramelized shallotsChicken and pasta with caramelized shallotsThanksgivingThanksgiving is for 14 this yearThanksgiving menu5% saltI wrote the sauerkraut recipe for the school recipe bookI can breathe againThe espresso machine is backNo SwapWe're taking a break from the Booze-Only Yankee Swap this yearFace on the fritzMy face is bothering me due to the storms in the atmosphereUnfortunately I couldn't eat dinner with my familyI had a scrambled egg on some rice so it's not like I'm dyingTurkey BrainA week away and the Thanksgiving meal took over my mindI hope that I will be in the clear and so I can enjoy eating the meal and not be in fearI'm put in the meat order after trying to put it in back in October and they were like, "We'll do it next week." I'm either super early or coming in in the nick of timeCool hipster shoesThe guy at the mobility shoe store asked me what kind of shoes I want and I said I was a hipster and I was cool and he said so you want dress shoes?Too Much BloodJan hasn't been able to smell anything since he was 18Nami drank Jan's bloodBut at least she didn't drink her pissRejectionUniform Rejection of All writing submissionsDisability studiesDisability major at UCLA, first at a CA public universityMysterious note"Not just the bad stuff but the stuff I thought was really good"Washed upIn a discussion of popular music John John told us Lady Gaga is washed up
Welcome to What's The Matter With Me? Podcast Season 7. Episode 31, "God Of Thunder"The provided text seems to be a collection of various unrelated topics and updates, including shoutouts, a fundraiser for KFJC, an art acquisition by SFMOMA, the outcome of a baseball game, discussions about tucking in a t-shirt, an exploration of self-sufficiency, cooking, and conversations about toxic behavior with your son.ChatGPTShout OutsShoutouts to Rocky who dug the face tattoo ideaRemember to use the drawer. Repeat: do not get a face tattoo, just a drawer full of scraps of paper with tattoo ideas written on themShouts out to Max Level, standing at the edge of an inky black ocean holding a torch aloftFundraiser is done2023 KFJC Artist Shirt by Abigail MaeThe KFJC fundraiser wrapped up bc we raised our operating budget for the coming yearI donated to fundraiser @ KFJC and got the artist shirt (pictured above)Outsider Granted EntryJOSEPH ALEF, UNTITLED (JA 072), 2018, WORK ON PAPER, 22 X 30 INCHES via Creative Growth“SFMOMA’s investment marks a historic milestone in the contemporary art world,” said Ginger Shulick Porcella, Executive Director at Creative Growth Art Center. “It has been far too long that art institutions have ignored or underrecognized artists with disabilities. These talented creators can no longer be relegated to the category of ‘outsider artists’ as they firmly occupy the walls of museums worldwide.”SFMOMASF MoMA makes histric acquisition of works from Creaative Growth/Creativity Explored/NIAD artistsRangers In 5https://www.youtube.com/watch?v=lVbOQzgQKNkDiamondbacks lost the world series in five games to the RangersAs promised, I now have an Adolis Garcia Rangers jersey on order for my sonLocked In With Deepakhttps://twitter.com/DeepakChopra/status/1704637821493919867https://twitter.com/johnhoppin/status/1704637997222920243Art School Job ProspectsThe person who named cymbals had a really cool jobDo you think the hiring manager had other well qualified candidates?Keep your shoes onTucking in a t-shirt in doesn't make it look any more formalIf you are in my family, it makes you look like a pumpkin who thinks that a tucked in t-shirt is appropriate to wear to an event that it clearly is notOtherwise, you wouldn't tuck it in your silly t-shirt. Everybody needs directionsEven Jesus Christ was not perfectGod of ThunderI was the drummer from Def Leppard for HalloweenTight reviews: one reviewer was 5'9" 230 lbs "pretty sure my junk was showing"The tights fit, and I don't think my junk was showingExploration in Self-sufficiencyI took the kids to school by myself, picked them up, fed them, bath, and bedtimeSo my wife could go to San Diego on a work tripGreen sauce for steak and vegetablesWhat we're cooking now: grilled skirt steak with new potatoes & the real chimichurriGet every last drophttps://www.youtube.com/watch?v=FBtu3zhSD40&t=3sJudy woodruff & Dan Doctoroff on PBS Newshour Disability Reframed segment about squeezing every last bit out of lifehttps://www.youtube.com/watch?v=rXZUV2pX584Washington Phillips on Dust-to-DigitalToxic messagingTalking to my son about the imagined bullies in middle schoolTrying to introduce the concept that making fun of a adisabled person is a toxic behavior, and as he gets older it's going to be important to see that clearlyI am not at all sure that will help him
In "What's Really Going On", John discusses the challenges he's been facing with his children, particularly their lack of cooperation He shares the stress and difficulty he experiences in trying to handle this situation, about the frustration of dealing with his son's behavior and the impact it has on their daily routines. He expresses his hope for a resolution and mentions that it's the 30th episode of his podcast this year.The episode discusses various topics, including John's family life, his children's behavior, his creative work with Hoppin Hot Sauce, and his experiences at a drum and bass show.Forming a rock bandWhat I meant when I said that the fans of What's The Matter With Me? Podcast could change the course of history is that there's enough of them to form a rock bandCoffee Annual Deep CleaningWe took the coffee machine in to get servicedPile of SticksAll of my walking sticks are bent or otherwise unusable and I have them in a pile in the corner. I called in the warranty for one of them, and the replacement will come on Monday.Drum and bassI went to the drum and bass show at the Golden Gate Park Bandshell in my wheelchairSubmissionKind of a milestone: I submitted poetry to ten publications. It's probably just the beginning.Hot SauceCheck Out Hoppin Hot Sauce On AmazonMaking a new production of Hoppin Hot Sauce, getting everything readyWhat's really going onMy son is driving me wild, and my daughter is watching and learningJohn discusses the challenges he's been facing with his children, their lack of cooperation in doing homework. He shares the stress and difficulty he experiences in trying to handle this situation, and the frustration of dealing with their behavior and the impact it has on their daily routines. He expresses his hope for resolution and a good night's sleep.
In "Multifaceted Discourse" John discusses various topics and gives shout-outs. Here's a summary of the episode:The humorous and diverse "Multifaceted Discourse" delves into a smorgasbord of subjects, with the usual touch of self-deprecating charm. Being a jazz vocalist is a real thingWe saw Kurt Elling & Charlie Hunter at Yoshi's, where they always have a great accessible seating setupIt was cool to see a jazz vocalist headliner; they scat on every songBow DownJohn dishes out shout-outs, paying homage to a variety of individuals, and even reflects on reaching a milestone 201st episode. Shout out to slartibartfast who loves the productionShout out to Jersey girl, who ideated the blind musicians kfjc specialShout out to Nathan Mary tibby & butters who wrote in to Let me know, this is my 201st episodeShout out to the sandman who said "it’s good and reassuring that AI cannot describe your show. Your show is about a specific human experience. I am glad that AI does not understand that yet, it means we still have time"Onus Removed?This could be a moment to rethink the A.D.A.'s framework. The Justice Department could take a larger role in enforcing the law, and Congress could amend the statute to give businesses a window to correct violations.Evelyn ClarkWe nearly take a thought-provoking turn reading The New York Times' article, "It’s Time to Rethink the Americans With Disabilities Act," shedding light on disability-related discussions. Always Protect YourselfA viewing of the film "Million Dollar Baby"; delving into thoughts on body limitations and the pursuit of perfection. As Lennard Davis himself has written, "what is universal in life, if there are universals, is the experience of the limitations of the body". Yet in films like Million Dollar Baby, and seemingly in every other ideological corner, we confront what Davis calls a "fantasy…of the perfection of the body and its activities". We cannot step into this ring alone.Jay Dolmage &William DeGenaro, Ph.D.SubmissionThe episode then takes a poetic turn, inspired by Joe Imwalle. I've submitted my poetry around to some places and that's a lot of fun and disheartening, but I'm more having fun with it.Still need a liftWheelchair lift issues are ongoing. Book RundownBook reviews include "2021 Best Sports Writing" anthology, Brandon Taylor's "The Late Americans" and "Biography of a Phantom" by Mack McCormick. Letting AI sum up"Multifaceted Discourse" is a delightful blend of humor, insight, and intrigue.
A Range Of SubjectsWe’re paid through the yearIn this podcast episode, John shares personal anecdotes, music interests, and his challenges due to multiple sclerosis. He discusses social experiences, urban planning, wheelchair tennis, and efforts to improve mobility. The episode offers insights into his life and diverse interests.My wife reminded me of the time I got nervous with her family and I said that jujubees give you "copious fecal matter"Music RundownNew adds:https://www.youtube.com/watch?v=iAI_0ncyo3MGabor szabo bacchanal - 1969 psychedelic apocalypse world music guitar centric Dad gave it to mehttps://www.youtube.com/playlist?list=OLAK5uy_nZEvJap1jZ-Qr4n3iN6JyTHzJDIVcZerMZum Vol 1 & 5: indie experimental playlist from George Chenhttps://www.youtube.com/watch?v=Ejrhm5hVzMYsick thoughts on total punk recordsThis got me into the KBD scene - here is the Wikipedia pagehttps://www.youtube.com/watch?v=xSKR5Rpru7Qfrom The Odd Man Who Sings About Poop, Puke and PeeTremor ControlI'm deep diving into olivia tremor controlhttps://www.youtube.com/watch?v=1yFaHBPOLJIWill Cullen Hart has MSThe collected works book, mostly olivia tremor control covers and related ephemera'Jazz' alone will doRenaming jazz CD genres into just jazz from contemporary jazz, jazz fusion, hard bop, or whateverNot always socialBeing social is hard bc its hard to be socialBaby's in the cornerI went to my Mom's birthday and everyone stood around and it wasn't the right place to hang outI got out of there and went to a table in the corner of the roomThe party was crowded but nobody sat next to me and I received people like the pope. trying hard to recognize them after not seeing them for many years. It was ok. I chose a seat that was very close to the stage.2.5 Ft/SecRead a piece in the times about urban planning for senior citizensStir Crazyhard to get a roundtrying not to go nutsBurning Man attendees got to go home, when will I get to leaveWheelchair TennisWatched the wheelchair us open tennis, Spaargaren NED v Fernandez ARGLiberationCALLED the mobility people TO GET THE LIFT GOINGWe set an installation date for October 10Choking on foodHad one of John's friends for dinner and they ate seconds and thirds, then everything was gone and it was gratifying. Ground beef tomato pastaThen I coughed on some Watermelon covered with tajin. "This is normal", John told his friend. I guess it is. I felt bad for him.AI Cooking SchoolAI Hoppin Hot Sauce food photographs are impressively strangeChallenging Juju1919 market warehouse party spot is still for sale 20 years laterFor the nth time
Potty Mouth DJDelving deeper into what AI says I already do, I present to you, “Stream Of Consciousness Narrative.”
The “What’s The Matter With Me?” podcast is a stream-of-consciousness narrative where the host, John, shares updates and thoughts on various topics that are currently on his mind. In this episode, John talks about a range of subjects, including his recent visit to urgent care, his experience with physical limitations due to multiple sclerosis, and his creative work on fundraising ads for a local radio station. He also mentions listening to the “Iowa’s Newsworthy Past” podcast, gives a shoutout to his friend George Chen, who runs a music distribution platform, and reflects on the nature of his podcast as a support mechanism. Throughout the episode, John’s narrative style is reflective and personal, touching on both humorous and serious topics.
Artificial intelligence
I like that, “reflective and personal.” I’m starting to think that AI really gets me. Enough claptrap, let’s dive right in.
Is it a population thingOklahoma and North Dakota have the fewest listeners to this podcast. California and New York have the most.
Quit/NahI am thinking about ending the podcast, what do you think? Use the contact form on whatsthematterwithme.org. Scratch that, if things seem bad, I’m going to think they’re worse. I’ll take no action.
Funky Wormhttps://www.youtube.com/watch?v=_A-GEBF4fTUFrom Beyond The GraveListening to the Kurt Vonnegut interview cd from the back of my wife’s old crashed car, he discusses how making a play is like getting yourself a new family. Listening to it, I felt that it related to how volunteering at KFJC provided support at a time when I had changed my lifestyle. I had moved from Brooklyn, to East San Jose, and I was looking for a new scene.
Thee Song CandidateShout out to Rocky who wrote in saying she dug the new theme song candidate from last episode, “Goru.” I admit that it was heavily influenced by if not completely derivative of The Body & OAA, but maybe that isn’t a bad thing.
In Between The Lines Of AgeHaving my doctors tell me that my leg is useless or that my hand is paralyzed reminds me of when my kids used to say, “You can’t use your hand”, and then I would put a piece of paper in it. And say, “what about this?”
Listening without intentionIowa’s Newsworthy Past is a podcast with about 200 episodes consisting of readings from pretty old Iowa newspapers. You can listen to it really hard or you can zone out and let time and space melt away.
Acquiring LegitimacyGeorge Chen’s Zum Audio Vol 5 compilation was on bandcamp radio last week and that’s a pretty big deal even for an accomplished polymath gadfly like George.
Reggae bible study
Have you been studying your reggae bible? I haven't, but on Dj Robert Rankin's Solid Foundation reggae show I heard the lyric, "The race is not for the swift, but who can endure." I googled it, and it's from the Bible, a riff on Ecclesiastes chapter 9, verse 11.
The race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all. Ecclesiastes 9.11
Hotter than rats in a sack
The family went to Fairfield and Suisun City for the kids' last day of summer break. It was 98 degrees in Fairfield, but the Jelly Belly factory was climate-controlled.
Afterwards, we went to Retroactive Records and Games in Suisun City.
More Maxims
Mean what you say and say what you mean.Those who say don't know, and those who know don't say.Smile now, cry later.
Pile it up high
They put me on a medication that causes drowsiness and I'm like add it to the pile. Thankfuilly, that was last week and now I'm off it. Meanwhile, I am working on reordering the shoes in my correct size, but its not exactly going smoothly.
To top iot off, my AFO 0brace is still broken and tough to walk in. Trying to get up, I fell and hit my head and cut myself. After some cajoling, I went to the ER and got four staples. I admit that I'm glad I did. Next week, I'll get them removed.
New music adds
This week's music run-down is guaranteed to freak out the squares. Nine Inch Nails do soundtracks, Portishead stepped on a Lego, Gravy Train go up-market, and extreme hardcore vocal interplay - this week's music adds have a little bit of something for everybody. Don't let your life go silent.
Teenage Mutant Ninja Turtles: Mutant Mayhem (Original Score) by Trent Reznor & Atticus Ross
Enemy of Love by The Body & OAA
No Jack Swing by Brontez Purnell
CHOKE! SPLIT by XGRIFOX
This Week's Selfie
Welcome to "Iron Curtain," a trip behind the enemy lines of the mind, contrasting the styles of my current dentist, The Cat, with my last dentist, The Iron Curtain. Peel back the layers of flayed gum tissue and see!
Caught in the act
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Retired cop caught some people driving around. He subtly got their name and address and he's still taking their statement
Shoe Fail
I bought Billy shoes and they were too small - got to exchange
New Kind Of Animal
Got my teeth cleaned where they do it like cats instead of like the iron curtain. I wonder if she ever wanted to quit being a dentist in the states and move back to Ukraine and do her iron curtain work on Russian soldiers
Live Ukrainian Death Match
Accidentally head-butted the wall in the garage - abrasion. Fell on my stomach.
Sinkrippers
We got the pedestal sink in the bathroom anchored to the wall with a a piece of wood and my friend complimented me that my house looked nice
My kingdom for a tube
Popped my tire, and instead of getting a replacement, I got a new wheelset. I got solid wheels for my wheelchair at the medical supply store, where they said nobody uses tubes anymore.
A Rare Success
Last night for dinner grilled a 2# Rib steak, onions, cabernet - it came out as even a rare that I have ever cooked.
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Video podcasting
In "Security Shirt," I'm experimenting with creating a video version of this podcast. With video, it's proof. I'm going to focus on trying to make movies, then seeing if I can integrate them into the podcast
Shout outs
Shout outs to Wylie
Shout outs to the Sandman who wrote Jack Tar & I about a live Buddy Guy concert on TV yesterday
Reframing
Thinking back to "Hit My Head On The Bed," maybe I should get a bed frame with posts or other hardware on the bottom so I can hang on to that - because there isn't anything to grab on to at the lower end of the bed.
Sao Ichikawa wins Akutagawa Prize
Sao Ichikawa, the winner of the Akutagawa Prize, speaks at a news conference in Tokyo on July 19. (Takuya Isayama)
“I wrote this novel thinking that it is a problem that there were few authors with disabilities,” she said. “I want everyone to think about why the first winner did not appear until 2023.”
Security Shirt Movie
https://www.youtube.com/watch?v=4MbvV8EkB1g
Security Shirt story - "a man is blocking the stairwell"
AFO drama
My AFO brace has come unglued again
I'm falling a lot, getting bruises, and taking lots of ibuprofen
Thor Raining Down Lightning
Trigeminal neuralgia was like lightning coming through the clouds. The clouds came from the carbamazepam and gabapentin I was on at the time. But then the lightning of trigeminal neuralgia in electrical nerve disease was like being in an area where there are lightning storms. The lightning is pretty unpredictable and there are mostly clouds, but once in a while the lightning strikes or there can be a lightning storm that breaks out and there are many, many electrical strikes. It causes a lot of anxiety because of how unpredictable it is. And having gone through many many of those lightning storms, I am kind of traumatized. I am on the same medication today and under more or less the same clouds. But there is no lightning when there is any feeling at all it is very muted. But like I said I'm traumatized. I'm anxious and I'm fearful. I have to recognize that
https://twitter.com/johnhoppin/status/1686781634555850752
Easier dressing
Relaxed fit clothes fit my AFO easier but they are going top be a change for my wardrobe
From the Corrections Desk
Correction from my wife. We didn't use carvana that we use CarMax. The same one we use the last time
Smoke Signals
Burping after eating Taco Bell vegetables tastes like cigarettes
I was about to tell this lady at National Mobility and Seating right when the guy told me I was at the wrong place and he was behind the window at first so I didn't see him
My wife was relieved
On The Beat
I saw Kerry in the park at 8:30 a.m. trying to do what he can for as long as he can
Frank Fat's
I want to go to Sacramento for classic cocktails and chow mein
Revenge Against All Odds
Crippled Masters. One with no legs, the other no arms.
Disabled self-representation in a martial arts film.
An avant garde film.
Ended with no falling action
This Week's Selfie
With my wheelchair
Video Podcast Experiment
https://youtu.be/PBS98l7BzOo I guess
I'm just trying to make this work yo! I made a video podcast of the What's The Matter With Me? Podcast. This isn't a full episode of my podcast, rather a test to see how it works. I have wanted to do this for a while and I just figured it out here and now. I think I'll keep at this, so stay tuned.
Welcome to “Hit My Head On The Bed”, an episode unlike any other about unwelcome interactions with a solid bedframe, children's birthdays, and walking the beat. PLUS a new theme song candidate faster than any others.
Frame Very Solid
I fell and hit my head on the wood bedframe
Child's Birthday
It's my sons birthday tomorrow
On the weekend, he is going with a few friends to see the new Mission Impossible
Movie Theater Bars, Part One
I bet they make whiskey sours with Jim Beam White Label at the bar
Just In Time
Hit the corner on my current phone and then it starts transcribing what is said and it does a pretty good job
I am figuring out the accessibility controls on my phone just as I am about to change to a new phone
I am an environmentalist so i throw away my trash
Technology has too many layers of microphones
By the time I figure out how it works, I need a new phone
Bike shop
we went to the bike store in the neighborhood and got my son a bike
we live next to the ride around the lake
the shop makes custom road bikes that are too nice for a ten year old
Lost Focus
Getting ready, I didn't stay focused - the kids were fighting - and I didn't stick the landing and fell getting ready
I hit my head on the wooden bed frame
I need to get help when I'm trying to get out of the house, but maybe it's unrealistic to expect it
Walking The Beat
My neighbor is a retired police officer
He walks a lot and has a a loud voice
According to the bike mechanic, we live in the "forgotten zone"
He walks the beat all the time and he knows everything that's happening
Down At The Heel
My shoes are trashed
I'm looking at billyfootwear.com which is made for people who wear AFO braces
I need help figuring out the sizing because the AFO affects what size I am
My current shoes are ugly and decrepit
The soles are cracked and the uppers have a condition resembling alopecia
Wheelchairiots Of Fire
My phone misheard my wheel chair as a wheelchariot and I thought that was pretty rich
Good thing I'm not having to fight for my life in ancient Rome
Opening Time
what time do they start serving whiskey sours at the movie theater bar
Sun Jam
NEW Theme Song Candidate "Sun Jam" maybe the fastest theme song candidate ever
This Week's Selfie
Hit My Head On The Bed Selfie
Remember, the selfie is only available to those who subscribe
Welcome to "New Van" on the What's The Matter With Me? Podcast
In this episode, I get a new van that accommodates a chair lift, host a friend from out of town, and start to plan the heavy metal concert at my burial.
News Smash
News flash news smash breaking news update chyron Hoppin Hot Sauce is for sale on Amazon
Shout outs
Sand Man's idea
Shout out to Rocky and the Sand Man
Burial Music
Terrible Cemetery
A terrible cemetery would have no benches
Metal changes tempo
You can only slam dance to it
The dancing people stay away
You can't dance to it
Nami replied, "and maybe that's the point." A metal thing to say
No Police Escort
little league baseball season was a disaster
The police escort didn't show up and the parade was canceled
In the middle the A's decided to move to Vegas
Visitor
Buddy came from out of town
New van
New car smell
They picked up the old van for donation
We purchased a 2020 Toyota Sienna.
Its coming on Saturday
Pick Me Up
https://www.youtube.com/watch?v=LO50hC5WgYc AL6000
Finally, we are going to get a wheelchair lift in the trunk.
I am trying not to get too excited
On The Contrary
Admittedly, I can be a contrarian, so when KFJC got a little too carried away playing an all-vinyl marathon that extended to almost a week, I proposed an all compact-disc marathon, called The Plastication.
This week's selfie:
New Van selfie
Welcome to "Chew On That", an episode about new music, barbecues, and the cultural differences between cafes and diners
Best Sauce
Check it out: Hoppin Hot Sauce is on Amazon
News flash:It's the best sauce In the world
SHOP
Big Up Listener
Shoutouts to Rocky
Shout outs to the people who listen to every episode
Boom Roasted
We needed to order another Filter for the ice Maker and bang i did it
Trip to the Cathedral
Right around the corner
This is a podcast about nothing because i'm from the Seinfeld era
Ritual Hazing Absent Father
I had Dad drink cucumber skin juice
He grimaced. and we laughed and pointed at him
First Detroit Based Art Gallery And Studio For Disabled Artists
Progressive Art Studio Collective (PASC), a program of Services to Enhance Potential, is seeking funding to complete the build out of our future Detroit Gallery and Studio in LANTERN. If PASC raises $50,000 by August 5, we will win a matching grant through MEDC’s Public Spaces Community Places initiative.
SUPPORT
https://vimeo.com/840505686
Sausages On Display
We hosted BBQs on July 4th & 5th
I'm an extrovert and my wife is an introvert
For the 4th we had sausages and ssteak
On the fifth, we ate hamburgers
MUSIC RUNDOWN
https://www.youtube.com/watch?v=LCaD6GAQmjA Sonny Rollins & Leonard Cohen
https://www.youtube.com/watch?v=Oou1_mWFtig Ghast "O Akhea Rheon"
https://www.youtube.com/watch?v=qFM2yBy6GUA
Kids are into this
Purchased the catalogue
$0.15/release
Constellation Tatsu all for $20
This Week's Selfie
Chew on that selfie
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Welcome to “Air Time” on the What’s The Matter With Me? Podcast
Across the street they had that place with Coffee & Tea, remember that? It was coffee with a black tea bag in it.
Best Sauce In The World
Shout outs to the best sauce in the world
Hoppin Hot Sauce is a movement you need to get in tune with
Stay For The Selfies
Surf it on over to Subscribe page and never miss an episode
Makes No Sense: Is the plural of selfie also selfie?
Air Time
KFJC radio is an outlet for neurodiverse people and people with speaking differences and it has been that way for a long time
Shout outs to the people who download every episode
Watching the Special Olympics Opening Ceremony on ESPN
Disabled people can be hard to organize
I'm glad they got airtime
New glasses
Went to Costco and got new prescription & frames
I made Chili with chile de arbol in it
Good For Ex-New Yorkers
NYC Storefronts by Joel Holland
Paralyze my muscles
I went To the doctor to get botox
Botox is cosmetic but also relieves tension, llike spasticity caused by MS
I was embarrassed by my parents too
John was embarrassed to have me drop him at camp in my wheelchair
Salad is healthy
The internet thinks franks and beans are healthy
Pox on our house
Koko has Covid
Sellout
Rollins plays with the Rolling Stones, uncredited, on Tattoo You
https://twitter.com/johnhoppin/status/1673738874651299840
Aidan Levy author of Saxophone Colossus followed me on twitter
Don't know how
I need to sell my car
Early fall
I've been falling a lot
Welcome to “You're Just Jealous” on the What’s The Matter With Me? Podcast
My glasses, my walking stick, my car, my phone: everything is breaking down. My buddy's offhand comment takes me back to a time when my defense was, "You're just jealous!"
AI Is For The Birds
Shout out to Ashika who lol'd with me at how lame AI is, thanks for tuning in
Sandman and/or Uncle Dennis
Shout outs to the Sandman Uncle Dennis, no not THAT Uncle Dennis
also , why not, shout outs to THAT Uncle Dennis
but also to the Sandman Uncle Dennis
these are two different people
Shout outs to all the cult members
There's So Much Going Wrong
I'm relying heavily on my family to function
i got my glasses and my car back and have ordered a new walking stick
My cane got adjusted too high. I think I did it when I was messing around with it- that made it very hard to walk. Then, I made it too low
My old brace is giving me fits and I have to go back to the cobbler
I went to get a new brace and it was a fiasco
I have so much going wrong that it is hard to look past it
The way he says it
I ate a Wingstop chicken sandwich mango habanero and lemon pepper fries and it sucked
Unknown Emotional Toll
I fell 3 times on Monday. One time I asked John to help me sit up
Reading the paper
I bought a tablet to read the newspaper for $50 and it worked out
Potty Mouth Actor
Michael Rapaport Stereo Podcast
On the schoolyard
A buddy's offhand comment about only children took me back in time
"You're just jealous" used to be my only defense
"Who listens to you at that time of night?" - sorry Aunt Linda
This Week's Selfie
Welcome to “Disability and Obscenity” on the What’s The Matter With Me? PodcastIs disability obscene? Coverage of Michael J. Fox and Sen. Dianne Feinstein has me examining implicit connections between disability and obscenity.
People with advanced degrees can stomach the summary* Shout outs to Doctor Kathryn- she appreciates the summaries because they’re quick to read * Because she’s a doctor and they only get 15 minutes to do everything
Hah!* Finding humor in adversity makes it easier
Not Sick Anymore* Temperature report
24 Hour Meth Rave* Sonny Rollins met up with Sartre on his 1966 European tour * When he came back to New York City he could often be found at the jazz loft on the fifth floor at 89 East Broadway
The Emperor And The Caveman * I grilled a boneless ribeye, it came out perfect and it was a relief to eat it without the kids, who eat in opposing styles that are less than ideal in different ways
Navigating disability in public
Roosevelt remained paralyzed from the waist down and relied on a wheelchair and leg braces for mobility, which he took efforts to conceal in public.
From the Wikipedia entry “Paralytic illness of Franklin D. Roosevelt”
- Feinstein in a wheelchair – questioning the ageist and ableist aspects of the news coverage of Senator Feinstein
- Michael J Fox in “Still: A Michael J. Fox Movie” – “… his practice of putting an object in his left hand to mask its trembling.”
This Week’s Selfiedisability and obscenity selfie
Welcome to “Five Nights of Sweating” on the What’s The Matter With Me? PodcastA fever that doesn’t seem to want to go away; new music around the house; some terrible food. Maybe we can make the time pass quicker if we go to a grind core festival.
Is not wanted* I’ve got a fever that kept coming back
Word* What’s The Matter With Me? Podcast is sponsored by Hoppin Hot Sauce— it’s the best sauce in the world! hoppin hot sauce is on amazon so anyone can eat it with hash browns and and English muffin-egg sandwiches with or without cheese but definitely with Hoppin Hot Sauce
Feeling feverish* For the first 3 nights it was up around 102-103 F * In addition to Tylenol, I started taking Advil as a fever reducer, then I woke up covered in sweat with a normal temperature * Then the next day it would began again * I had an epiphany to drink Gatorade
Catching up with Sonny* Sonny Rollins has got a mohawk, where i’m at in Saxophone Colossus * At his shows, he came out with the cowboy hat, then he would take that off and had the mohawk underneath
Burnin’ Up* I sweat through the sheets for the 4th night in a row * Disgusting: I smelled like a case of unwashed grapefruit with a sour whiff of spoilage or maybe more than that * As if someone left me in the back hall, not in the fridge. by the dumpster near some unnamed liquid. * I need a clean up
New Music* New music rundown this week is pretty much from bandcamp bc that’s the only place I have been able to access recently + Fake Fruit + Terry Jennings + Nine Dog Dick + Dhol Tasha Sound System
On the fifth night* I sweat through the bed on the fifth night and woke up drenched yet again
Grim* In frustration at not being able to cook for myself, I took the reins at dinner * I ended up making fried gnocchi with spinach, Garlic, tomato, cream, a can of sardines * It could have used acid like lemon juice or vinegar to offset the tinned fish. There was a lot of cream though * It was terrible. the kids wouldn’t eat it. * I thought to myself, “It is making your nails stronger and increasing your hair’s tensile ability”
Made it through* On the sixth night the fever evaporated and I woke up mostly dry
Grind core for the whole family* Gilman is hosting the Fast, Wierd and Freaky Festival this weekend * It’s all ages * I might still be a little too tired plus John John is maybe not ready * Maybe he’s not even ready to hear the band lineup read aloud
Dad Butt Dials Me* Dad is butt dialing me again * We watched John Voight & Jane Fonda in Coming Home
This Week’s SelfieAfter Five Nights Of Sweating
Welcome to “Burnin’” on the What’s The Matter With Me? PodcastIn this episode, I’m still recovering from my last rhizotomy procedure, managing to get to get new footwear, and get out to a show in my wheelchair
Burn Victim* Chemical Burns melt your flesh. * I have 5 Burns about as big as a dime each. * I am using Medihoney, and I was initially confused by the name
They Look Like SneakersBeforeAfter* I got new shoes to wear when I’m on my wheelchair. For the past couple of years I’ve been using Minnetonka * I’m switching to white Vans slip-ons
Tiitration Blues* I am scared that if I reduce medication that the pain will come back. * But I need to reduce the medication so I can enjoy my life.
William Parker’s New Heart Trio* I rode my wheelchair to see the bassist William Parker (71) at the chapel * In the New Heart tTio with William Hooker (76) and Isaiah Collier (23) * My buddy Joe was the driver
Titration Blues, Pt. 2* I reduced my medication and the pain came back in the night
Parting Shots* I need a new butt cushion for my wheelchair * My son is at home because he has Covid * Max Headroom was a guy wearing a mask
This week’s selfieBurnin’
Welcome to “Rolling Around The TL” on the What’s The Matter With Me? PodcastLots of people use wheelchairs in San Francisco’s Tenderloin district, a pretty rough area between Union Square and Civic Center
Shout outs* Shout outs to rocky + she’s listened to every episode * Shout outs to the people listening through the past episodes * Send me a n email via the contact form and I will give you a shout out that is quite possibly the best one you’ve ever received and the maybe best that you ever WILL receive
Dad Butt* Dad butt-dialed me again
Travels by wheelchair* Went to Christian McBride in my wheelchair at Yoshi’s * Also in my chair, I saw the Floresta Little League A’s game
RF Rhizotomy Number 2* Had trigeminal neuralgia face pain 5am Wednesday morning & had more drugs,, surgery one day away * I had surgery and have been clear from major pain since then. But I am still on pain drugs. * My nose has triggered some zaps but they are lesser in intensity than they had been, with the caveat I’m still on some medication
I Can Go Down* My AFO brace is broken and it’s very hard to walk. * I have to walk all on my heel, and if I put my weight on the outside of my foot or on the front Of my foot I can go down.
Rolling Around The TL* I went to the deerhoof show in my wheelchair * Rolling in the TL, I saw a lot of wheelchairs, but mine was the only one that was electric * We ate at Osha Thai which was accessible, a blast from the past, and sadly due for an upgrade * We got into the car after midnite- Rock & Roll! * I called ahead to the Great American to let them know I’d be coming in my chair, they reserved me a table behind a pillar against the wall. It had poor visibility, but decent sound * I started focusing on the audience. Nowadays people wear their pants wider and hemmed higher
This Week’s SelfieRolling Around The TL Selfie
Welcome to “Poop Burrito” on the What’s The Matter With Me? PodcastThe tortilla is fine. Maybe you can save the lettuce. In a poop burrito, you have to go through the layers.
My trigeminal neuralgia pain came back and so this episode is a bit like a poop burrito. I was in the hospital last weekend, and they changed up my medications to get me out of pain. A couple of days ago I saw the surgeon and I’m going to have another rhizotomy next week.
Big Shoutouts* Shoutouts to Nathan. His message: “Just wanted to say congratulations. On April 28th the what’s the matter with me Podcast will be 6 years old! Keep it up buddy. And Hoppin Hot Sauce is the best sauce in the world.”
I did one thing right* You couldn’t sing to March’s theme song candidate
Speaking the unspeakable* You are not allowed to call yourself a Bohemian– It’s not a thing you can call yourself. Lazy hippie is more like it
Round and vacant* The security check said, “Click all the pictures with a donut” but it seemed like some of them were bagels
I Was That Guy* When my family was in Japan, the kitten didn’t come in one night. Then, I got in my wheelchair and rolled around calling for my cat.
Inequality Of the remaining Beatles that are still alive, we have the best one and the worst one. JK ducking*.
Boil Water Warning* No one takes Cam Likely’s phone calls
Smooth sounds* I want to hear elevator music, and I walk out and my wife is playing some violin concerto
Competition begins* It’s little league baseball season again and the game is a little more recognizable, pitchers are starting to pitch better, more towards the plate
Sonny in Europe* Its 1959, and Sonny Rollins is going to Europe. Back in the states, he’s jamming with Bob Dorough & Mose Allison at the jazz loft. Then, he goes on sabbatical and climbs onto the Williamsburg bridge to practice without disturbances.
Visual Rhyme Time* The suction cup handle rhymes visually with the book page holder
This Week’s SelfiePoop Burrito Selfie
2023Welcome to “A Pint Is A Pound” on the What’s The Matter With Me? PodcastSaying* A pint is a pound the world around
Kids Are Gaslighting Me* My kids say I smell like poisonous chemicals * They say my car smells like vomit * They are the only people to vomit in my car, and I used cleaner to clean it up, so this is gaslighting and I should threaten them with cancellation
Know Your Cobbler* I went to the cobbler again and the parking lot was full
Ancestral Lands* My family went off to Japan
Getting The Most Of Zing’s Spring Sale* On the last day of their spring sale, I put in Zingerman’s cheese order number 2, for parmigiano reggiano & gouda * It’s been a good spring with delicious cheese
Reading About Disability* At the Duke University press spring sale, I picked up some books on disability
Life and times of Sonny* Sonny Rollins has been released from jail, gone to Kentucky for the cure, joined Brown-Roach Inc., and recorded Tenor Madness
March Theme Song Candidate* Theme song candidate “Song V”
The Scary Neighbor* Fedex guy brought the wrong package, and it was for my neighbor across the street * I opened it because I thought it was the new cheese * So I loaded it into my wheelchair and went over there
Birds of prey* At the owl cafe
Bachelor life* Keeping the metal food bowl full of chicken sausage tomato pasta * Watching the Warriors win important games and missing my family
Travel Handlehttps://twitter.com/scorebecca/status/1641873119483682901?t=3jTiNzDjbfPCpNgBL73BSA&s=08Suction cup grab bar seems to be missing the crucial element of stability, but on the other hand, it’s a cool novelty item and it might even work a little bit* ADA Grab Bars keep me from falling. but I’m not sure that a handle held on by suction would keep me up, so I probably wouldn’t use it
RIP Sakamoto* RIP Japanese composer Ryuichi Sakamoto, he made pretty cool music for The Revenant along with myriad othter films, games, and projects
Checkup* Parents came over. Mom scooped the litter. Dave helped me go fill the propane tanks. We got a baguette and 2 cookies
Endorsed By No One* The thing about Orthodic Footwear is that it is not endorsed by anyone. Except doctors
Walking Badly* Tiger Woods walking badly at the Masters * ESPN’s Michael Wilbon said he didn’t want to see Tiger moving this way, but I wonder how much that will matter to him
Welcome to “Multiplex and Talent Show” on the What’s The Matter With Me? PodcastThis week, I used my wheelchair to go to the multiplex in Dublin and the talent show in the auditorium at my children’s elementary school. The movie we saw was “Inside” with Willem Dafoe and the elementary school talent show had a few truly bizarre, fun memorable moments.. Using my wheelchair made it possible.
Spicy Nut and Pretzel Mix* Whipped up the David Lebovitz snack mix because our dinner guest brought an extra pie. I think you could say it was burnt, but it’s still so addictive that it didn’t matter – it all gets eaten every time
Welcome in* Shout out to Canada. I watched the Sharks lose to the Oilers last night so I gotta give a big Shout out. to Canada * I heard the band Big Blood from South Portland, Maine on the radio during KFJC’s Female Takeover a marathon of music created by female artists – shout out to cousin Jimmy
https://www.youtube.com/watch?v=hDmrH488oS8Big Blood* The song I heard was “Reproduce and Get Dirty which is like a great summary of all living things. It has great slide guitar and a wonderful vocal melody that soars at times and is also more intimate other times * Big Blood has a lot of free music {including the aforementioned track) on the Free Music Archive
At the Multiplex* I went to the Regal Hacienda Crossing Spaceport in Dublin. It is a multiplex at an outdoor mall * Shout out to Anjela the hair-cutter who told me she went to movies there when she was in high school * I went with Nami to the movie in my wheelchair. I like going to the multiplex in a wheelchair because multiplexes are big and huge and I don’t know if I’d be able to make it otherwise * We saw the movie Inside with William Defoe * It’s about an art burglar who gets trapped inside a smart house which more-or-less tortures him and features the destruction of millions of dollars worth of of art and furniture.
Kids Got Talent* I went to the children’s talent show in my wheelchair, but beforehand i emailed ahead of time to ask if they would save a space for me, which was no problem. they saved a space for me at the front of the room and a really sweet girl wearing a tap outfit helped me to get settled * There were great embarrassing song and dance routines, solo Hamilton, martial arts, gymnastic cartwheels I & II, Water Under The Bridge interpretive dances and SO much more. It was more interesting than I thought it would be. * My son told me he had a crush on a girl who did a gymnastic routine. When his mom asked why, he said it was because she “ran really fast” * “A pint is a pound the world around”
https://twitter.com/deerhoof/status/1637952008039849984Indie rockers weigh inOnly one thing left* subscribe to the whatsthematterwithme podcast and you’ll get a very fancy nice email version of the podcast every time a new episode comes out its very handsome be sure to click subscribe right at the top of the page, just a name and your email is all we need to get goin and then youll always get the selfie
This Week’s SelfieIn the studio
I got in a car accident where I got rear ended, wasn’t injured and the insurers agreed that I was not at fault. This is a blender episode, with lots of little segments that all go in there.
Blender EpisodeThis episode contains lots of different segments, all going into the blender like fruit goes into the smoothie.. Stay tuned for lurid stories of rampaging young adults and their dangerous car accidents, but let’s start our blender episode back in the 1990s at Jamba Juice.
Juicy Tale* Do you go to Jamba Juice? My first thought was that I went there in the nineties, and that I don’t go there anymore. * Kind of like Noah’s Bagels, I feel like Jamba Juice belongs to the 90s the way Orange Julius belongs to the 80s * But I go there all the time because like El Pollo Loco, you can trust it, if you don’t trust anything, Jamba juice will feed me I get the peanut butter smoothie * Jamba Juice was originally called juice club * Began in San luis obispo in 1990 * It was renamed in 1995. * In 1995, founder Kirk Perron swapped out Juice Club for Jamba Juice, which is a play on the African word, jama, which means “to celebrate.”
Music & Culture Festival* Like Carijama, the dormant Caribbean music and culture festival in Oakland’s Mosswood Park * Ended in violence every year 2001-4 after existing since 86
Making The Scends * I have been using lent as an excuse to go to the fried fish place in San Leandro on 14th street Scends
Crate Digging Expedition* Visited Stacks Records, a used record store in Hayward
Session In Paris* Masahiko Togashi was a jazz drummer who sustained a spinal injury in 1970. * After his injury, Togashi had a custom drum set adapted so he could play drums using only his hands * At Stacks, I found a copy of 1979s Togashi / Cherry / Haden “Session in Paris – Song of Soil” with a picture of Togashi in his wheelchair on the back, something I haven’t seen very often on a record, so I bought it right away. * If you’re looking for a copy, they’re on Bandcamp
Pole Cane Stick * Got a new walking stick made of carbon fiber, the old one was aluminum. * The weight difference is like picking up a twig vs. blade of grass
Creative Destruction
I was on vacation in Palm Springs, Calif., on Nov. 7, 2021, when I awoke with the cacophony of a dozen dial-up modems blaring inside my head. Confused and alarmed, I called out to a friend staying in the room next door and could hardly hear my own voice. When he responded, I heard almost nothing at all.
The reason for my sudden hearing loss and the persistent ringing in my ears wasn’t immediately obvious, to me or to the emergency room doctor who examined me that morning. I hadn’t stood too close to the speaker at a concert or hit my head in some traumatic accident. I simply had gone to sleep with my hearing intact and, come morning, it was gone.
My life since that day has been difficult to describe, though the words I return to most often are “disorienting” and “humbling.” I spent months shuffling from one medical specialist to the next for a battery of tests and treatments. I eventually started wearing hearing aids and learning American Sign Language. And, perhaps most challenging of all, I confronted a new identity — disabled — that often leaves me feeling vulnerable.
At first, I also felt very alone. No one hands you a guidebook when one of the fundamental senses on which you innately rely is revoked without warning. Even the most attentive physicians are primed to focus on your physical symptoms, not the upheaval that a sudden impairment brings to your personal and professional life, nor the erosion it causes to your sense of self.
Steven Overley, “I had decades to make peace with my sexuality. My disability is a different story.” NY Times Subscriber-only newsletter (EXCERPT)
- Acquiring a disability feels like forced creative destruction
- Steven Ozerkey was guest writer for Frank Bruni’s newsletter last week and shared his perspective on acquiring a disability
‘Eyesight Compromised. Could Go Blind’
There is virtue in stoicism, but there is also danger in what strong people can hide. His own situation has made him even more keen to understand the other whose public face contradicts a private suffering. He proposes that each person should have a sandwich board listing her pain and how she adapts: “Imagine that our hardships, our hurdles, our demons, our pain were spelled out for everyone around us to see.” Bruni’s sandwich board would read: “Eyesight compromised, could go blind.”
You ask, why announce your troubles? Doesn’t everyone have something? “Well, yes. Tell us anyway,” I think Bruni would reply. Maybe if we knew, we might slow down, turn and fumble toward each other. Perhaps, then I could say that you’re not alone, and I’m rooting for you, because I am.
Min Jin Lee
- Reading Min Jin Lee’s review of The Beauty Of Dusk by Frank Bruni, his account of impaired vision after suffering a stroke
AI Still Not Perfect* I asked openAI to summarize my podcast, and it said @johnleeclark hosted it, which isn’t true I host it. I appreciated the compartisom, and I’ll keep my eye on Clark, a DeafBlind poet.
**Approach**By JOHN LEE CLARKI spin around in the middle of the corridor. My cane taps against four elevator doors. I have pressed both the up and down buttons because there is a fifth elevator door. If I tried to tap all five I would come to closing doors too late. Let the fifth door open to a ghost. Let it be confused and close again.Source: Poetry (December 2021)
RIP Judy Heumann* RIP Judy Heumann, who passed away on Saturday March 4, 2023 at 75 years old
* She changed the way we think about disability, or the better. What an inspiration
Chimpanzeeing it* Since I got my teeth back I’m having to learn to use them to pull things into my mouth and not my lips. For the moment i’m kinda chimpanzeeing it
Shout outs* Shoutouts to Claude Hopper – congratulations on being awarded the Sal 9000 spot, Saturday mornings 6-9AM PST on 89.7FM kfjc.org. To get the ball rolling, I request Tapper Zukie
In the kitchen* Made a simplified meatloaf & cheesy polenta
Disabled Japan In Japan for example, it isn’t said that, “I am hot.” Instead you might say “Heat, there is.” It’s a group culture, which ios different from the West, where we live in an individually-oriented culture. In light of this, I have to reorient myself and figure out for myself. * How to exist as a disabled person in Japan? Rather than saying, “I am a disabled person, and they will accommodate me*.”
Youth Gone Wild* I got rear ended and although it wasn’t my fault (the guy in front showed down, then I showed down, then I got rear ended) by a 20 year old driving his parents BMW which sustained a lot of front end damage * The kid jumped out of the car, cursing, yelling. At himself, not me, but it’s freaky when people start doing that, because it feels like they could turn it on you att any moment. But it was cool. I was bigger than him and an adult. * I am always afraid when I get in a car accident that somehow it’s going to lead to me having my driver’s license taken away, because I’m disabled. * I thought back to the Positive experience I had in the Hayward DMV, And I thought to myself, “I am totally allowed to be here,” and it got me through
Youth Gone Wild Pt. 2* Def Leppard drummer Rick Allen assaulted in Florida by a 19 year old hiding behind a pillar
You made it this far* Subscribe to the What’s The Matter With Me? Podcast and you’ll get a very fancy nice email version of the podcast every time a new episode comes out, it’s very handsome, be sure to click subscribe right at the top of the page, just a name and your email is all we need to get goin and then you’ll always get the selfie
This Week’s SelfieAccident Survivor
Welcome to “I Got My Teeth Back” on the What’s The Matter With Me? PodcastI went to the dentist, and he attached some teeth to the posts the periodontist implanted in my jaw. It’s been almost two years since I had buck teeth in my mouth, and it is a big change. I made a lot of squash soup, adapting the method for one hand, and I’ve included the recipe in this post.
Shout outs* Shout outs to Klaudhopper, who asked about Hoppin Hot Sauce stickers * Shout outs to Tall John who called me up after I tweeted about not going to Japan
https://twitter.com/johnhoppin/status/1632793064740880384TeethThese are the images I gave to the lab that fabricated my new teeth when they asked for pictures of what my old teeth used to look like.
- I have buck teeth again! It’s been 2 years since I had my Teeth Knocked Out
Goes By Cam* Scam Likely probably goes by Cam * He calls everyone and no one takes his calls, on the answering machine he’s like hey it’s me, Cam- Cam Likely
Brain Lesions & Disease Progression* ‘Usual Suspect’ Lesions Appear Not to Cause Most Severe Disability in Multiple Sclerosis Patients
Slow* I had infusion which is a really long slow injection
Roasted Squash SoupRecipe by John Hoppin
Roasting winter squashes face up concentrates flavor, and using convection during the roast increases tasty browning reactions. Using an immersion blender makes it easier to puree using only one hand. We eat leftovers for lunch with a grilled cheese sandwich and Hoppin Hot Sauce.
Servings
8 Servings
Cooking Time
75 minutes
Ingredients 3lbs winter squash, cut in half, seeds taken out * 4T unsalted butter * Yellow onion, chopped * 1/2 teaspoon nutmeg * 1/2 teaspoon cinnamon * 1/4 cup maple syrup * salt and pepper, to taste * 4 cups stock Instructions*1. Preheat oven to 350 F {or 325 if using convection). 2. Roast pumpkins until easily pierced with a fork, at least 1 hour. Let cool, then scoop out the flesh. 3. Melt the butter in a large, heavy-bottomed pot over medium heat and once it is foamy, add the onion. Cook 5 minutes until soft. 4. Stir nutmeg & cinnamon into the onions. When the smell permeates the room, add the stock. 5. Add squash flesh, bring to a good simmer, stirring. 6. Remove from heat. Leave to steam for a couple of minutes. 7. Puree thoroughly with the immersion blender, using a stirring motion. Be extra-thorough to find any chunks of squash or onion that may be hiding under the surface.. It should be thick. I don’t do any extra sieving, so I want to take my time and be sure it is well-pureed. 8. Add maple syrup, and season to taste with salt and pepper.
Sonny At Rikers* Sonny Rollins got 1-3 years for having a gun. He was searched without cause. In 1952 he was at Riker’s Island. He arranged hymns for a hip chaplain at the Protestant Mission House, and he was paroled September 11, 1952
Theme Song* The theme song candidate for this month is less jazz & more industrial * I am considering whether it might have lyrics, maybe it’ll sing the intro part
Tiny Tooth WrenchWhen they reattached them, the radio played Lionel Richie’s 80-s smash hit “Hello”. Neither the dentist nor his assistant knew the song. Turned out that the dentist was born in 1987.
- The dentist used a little mini Allen wrench to attach them to the bases. there was pressure, it made my eyes water
- I have teeth now, so I ate Ramen and spaghetti for the first time since my bridge broke and took my front teeth with it in August 2021
My Gumbo History* Cousin Emily came over for gumbo on Saturday * I made gumbo at the Rockridge Fish in Market Hall in 2003-4
Last night for dinner* i made red sauce italian sausage with leeks
This Week’s SelfieI Got My Teeth Back
Smooth Like LotionWelcome to “Lotion” on the What’s The Matter With Me? PodcastIn this mini-episode, we check out a new candidate for the theme song for Season 8, a song called “Lotion”, because it’s a smooth song, smooth like lotion is. Kind of G-funk, smoothed out 90s thing. Maybe it will be the theme song for next season.
Welcome to “Concert At Yoshi’s” on the What’s The Matter With Me? PodcastI went to see a jazz concert at Yoshi’s in my wheelchair, and it was pretty easy, for a change. I made a lot of vegetarian bean chili ahead of a trip to the ranch, and the vegetarians approved of it.
Shout outs * Shout outs to Claude Hopper who listened to Wheelchair Dining Experience and wrote in to laugh about the banana salad * My mom told me that I should have complained about the restaurant experience, but I have worked in restaurants for a long time and I think that things can go wrong very easily, so I declined. Kind of a cop out. I was like it’s not gonna make my experience any better to complain. * Write me an email john@hoppinworld.com and I will give you a shout out, perhaps the best shout out you will ever have. What are you waiting for? Send me an email john@hoppinworld.com * Mom reminded me how the meal was like a car crash and i couldn’t look away because It was like I was driving and I crashed my car. Maybe I was like a passenger in a taxi where the driver got into a horrible accident and killed someone and was at fault I was not at fault but I experienced it. And I paid for it. Rest in peace to that dinner * I’ll complain next time.
Ads R Cheesy* It’s still true that I’ve never had an advertisement on WTMWM?, but I was watching TV with my son and they had an advertisement for this nut company and I have to say that I order nuts and raisins a lot. they also sell cheese powder and I’m interested in that. so if the nuts people come calling, I might do it, for the cheese powder
Eight Cans Of BeansChili* I made a gallon and a half of bean chili, to bring to the ranch. it got good reviews from the vegetarians who ate it up. I wanted to see if making vegetarian chili from canned beans was possible, and it worked out. * My buddy grilled some carne asada and onions, which mixed into the bean chili just right, lending good meaty flavor and satisfying some more primal urges.
Dave Holland Trio at Yoshi’sInstruments on the stageMonday February 20, 2023
Dave Holland, bass
Kevin Eubanks, guitar
Eric Garland, drums
- From jam band to nihilistic noise rock.
- Eubanks is a natural sideman and laughs at everything
- This jazz concert at Yoshi’s was accessible in my wheelchair
- I just had to call in the afternoon to let them know I was coming that night, and they reserved a table for my wife and I
- They gave us a good table with a clear vantage point and we enjoyed the show. We were not off to the side, or around the corner. It was easy to get to my seat, and I had a clear path to the bathroom which was useful because i had two whiskey sours
Spatula DebatesSpatula appears in English for the first time in 1525, when it morphs from being a weapon to a utensil most commonly used at apothecaries. Today, it describes any cooking tool with a long handle and a thin flexible blade.
Source: 8 Common Spatulas and How To Use Them
- We got into a debate during the making of chili about spatulas: are they for smoothing things out, or flipping them.
- Turns out, there are a lot of different things that you could call a spatula
Domestic Things* We received the bed and the fridge * The mattress is not a lumpy nightmare * The fridge is keeping things cold, but well short of freezing
I Drove Them* I drove the kids to presidents week camp this morning bc my wife was in the office
I went out for a wheelchair dining experience and it was a comedy/tragedy of errorsWelcome to “Wheelchair Dining Experience” on the What’s The Matter With Me? PodcastIn this episode, I rolled out to eat with my wife for a wheelchair dining experience and it was a comedy/tragedy of errors. It was supposed to be a fine dining restaurant but the experience fell short in a lot of ways. I’m so starved to get out that it didn’t stop me from having a good time, but I don’t think I will be back.
Presshttps://twitter.com/MS_Focus/status/1626311090559655939Mention from the MS Foundation* The multiple sclerosis foundation tweeted about what’s the matter with me Podcast- they are a loud voice in the community, and I feel very seen.
Shout-Outs* Not Quite Twice My Age: Dad is celebrating his 75th birthday cruising the Bahamas * Swing By: Chris Parachini is in Puerto Rico but he’ll make it to CA someday.
Tag > Slap* World Chase Tag is vastly superior to Power Slap “fighting”
Date Looms Largehttps://twitter.com/RachelHorne19/status/1623465866309296131* Does the date of MS diagnosis loom large? For me, the answer is probably a no, even though I haven’t forgotten it. I just haven’t given it much weight.
Unprecedented and Unique Dinner* Dinner experience in my wheelchair, it was a singular experience * When companies/products/marketers have come to me asking to advertise on WTMWM? I have refused.
Big Question I’m Always Asking* How can fatigue and achievement coexist?
Lent* Friday fish from Scends: snapper, shrimp, fries, mac n cheese, coleslaw, corn bread hot sauce. The kids liked it.
Sam Kinison Auto Parts Jinglehttps://www.youtube.com/watch?v=LGHyuRzrJ6Y* I made the Sam Kinison auto parts jingle
Bad Old Ideashttps://twitter.com/johnhoppin/status/1624865507244658688* NYTimes: College professor suggest eugenics to deal with the problem of an aging society
Pizza Problem* Bluebird Pizzeria in San Leandro is the only bona fide pizza in town, but they’re closed on Monday And they Sell out on Friday and Saturday nights, so you can’t even get a take away order placed at 7 o’clock. Its a little place& lotsTogo- no delivery. Guess I’m just ranting about there Isn’t enough pizza in mytown
Just Chili-ing* Im making vegetarian bean chili
This Week’s SelfieChin Music
Only Happens Once A YearWelcome to “White Elephant Sale” on the What’s The Matter With Me? PodcastIn this episode, I went to the annual White Elephant Sale in my wheelchair and thought about my identity, identity politics and representation.
Fishy Yellow Mess* Turmeric supplement broken bottle * Nami said getting an apology from a chatbot is unsatisfying. She said it’s because you don’t feel magnanimous accepting the apology of a robot.
Weird junk* white elephant sale was accessible in my wheelchair. Some parts were very tight, but I made it work. That place is full of great junk
Still toothless* I thought I was gonna have my teeth, and I don’t have my teeth (yet)
Fluid Identity* I have changed my identity and become a disabled person and in that way I understand something about intersectional identity * There are People that change their identity on purpose. I feel some kinship with them because my identity has changed, even though I didn’t do it on my own. * Viewing others with unmarked male gaze is no longer possible * I used to think that identity art was silly, because I questioned its relevance to art. * My thinking about the importance of identity, identity art, and identity politics has grown and changed just as my identity has grown and changed through maturation and enduring chronic disability
Mayhem SpecialDax Pierson* I’m dreaming up a Mayhem special for KFJC about disabled musicians. Something featuring disabled artists like Cedell Davis, Beethoven, Rahsaan Roland Kirk, Stevie Wonder, Blind Uncle Gaspard, Israel Vibration, Ian Drury, Dax Pierson, and more.
This Week’s SelfieWhite Elephant Sale Selfie
Auto-correct keeps messing with meWelcome to “Happy New Yeast” on the What’s The Matter With Me? PodcastIn this episode, autocorrect keeps messing with me. After almost two years, I’ll get new teeth on Friday. I drove myself to KFJC and did a lot of cooking.
Buck Wild* I lost my buck teeth in the Spring of 2021 and, at long last, I’m getting them back on Friday
Live on KFJC* I drove to KFJC and hung out with Jack tar during the Blues Collective and also picked up some records to review * They had this year’s new years card and a past new years card up in the lobby * I got assigned a couple records to review and brought them home, fulfilling the original reason to be a member at kfjc: to get free records
Misadventures In Autocorrect* “Happy new yeast,” my phone is always autocorrecting me, when I try to write happy new years. And I’m like “No, man- that makes me sound weird.”
Plastic TonesCedell Davis* Cedell Davis was a disabled blues man with limited use of his hands
Doin’ drop off and pickup* I took the kids to school- Nami was working in San Diego, * End of day pickup & took them out to Taco Bell, because they see the ads on TV
Cooking While Disabled Jan 2023* Need a TED talk about making PBJ that addresses the importance of spreading the peanut butter and jelly to the edge of the bread * Made mojo sauce, its hard for me bc it had some tricky things like using the microplane, blender & a lotta juicing i extended the marinating time to break out the work over 2 days * Made soup again, the kale was a bit difficult to strip off the stems but i did it anyway bc it’s good to do things within reason. Part of cooking is prep, and it’s the work
Artist at the Grocer* I saw the artist Stephanie Syjuco at the grocery store. That was last week; this week she’s at MSU, installing a new exhibition
https://twitter.com/johnhoppin/status/1618749185481920515Hold It Right There* The Amazon page holder device– I can read again. It’s called “Bookmark/Weight-Page Holder-Holds Books Open and in Place-Clear-by Superior Essentials” and it was Amazons choice. Using it is easy and I can read much easier without having to grapple with the book. * Currently, I’m reading The Year’s Best Sports Writing 2021 and Saxophone Colossus, Aidan Levy’s new Sonny Rollins biography and the page holder is doing exactly what they said it would- a useful product.
Body Horror, Part TwoWelcome to “Gum Scrape” on the What’s The Matter With Me? PodcastIn “Gum Scrape,” I’m finally on the verge of completing my dental implants. I went to the dentist and he got after me with an X-acto knife.
Tube-Tying* I cut the cord in 2012 And now I have cable in 2023 and I don’t ever want to be without live sports. Probably I don’t really feel that way but my son does and my wife certainly disagrees * rafa lost to mackenzie mcdonald * rafa had rf procedure on his foot for nerve pain * mcdonald trained at the Claremont Resort & Spa * I used to sneak into the Claremont to employee dining room * Sharks came back from a 3 Goal deficit for the 1st time since 2009
Periodontist is a 17th century job* Dentist used x acto knife on my gums
Easy Soup* Cooking while disabled- easy white beans, kale and sausage soup, kinda like this one, but with sausage. * Smoky from Goulart’s choriço
Take the deadly nightshade* Modern love is a romantic comedy and my wife doesn’t think it’s funny * My wife says opt for the deadly nightshade
One-handed piano player* I’ve been learning piano songs with one including soldier, Desperados waiting for a train, Blue Moon, & come back Kid
Disabled Owned & OperatedWelcome to “Disabled Business Owner” on the What’s The Matter With Me? PodcastIn this episode, I’m going through the books and wrapping up 2022 for my business when I discover that I’ve totally spaced and forgot to bill for the biggest order of the year. It happened last year, right around when I was about to go into surgery.
Shout Outs* Shout outs to KFJC’s Klaud hopper who was on the air on kfjc filling in for lucky j Sunday morning 6-9
Kid’s Game* I’m obsesssed with World Chase Tag
On The Flipside* I got a fully automatic turntable: AT-LP-3
Big Tunes* American Cream Band, Plastic Flame LP * Brooklyn vegan: big joanie announces first US tour playing in SF at rickshaw stop on 3.28. play ing union poolk on 5.25 Sold out & babys all right 5/26
Wierdo Stuff* Dynasty handbag weirdo night shirt
Handling Business* During acute periods it is hard to manage things. Case in point: I forgot to invoice my customer for the biggest purchase of Hoppin Hot Sauce this year.
Hey Dear* What’s up with Spam that begins, Hey dear * The scam of the 1890s. Is a Hoppin Hot Sauce Association * If you can’t steal from your friends
Cooking While Disabled* I made pulled pork with mojo &chiles * last night we had meatloaf, and that was not an easy recipe
NEW YEAR’S MIRACLE: A rotisserie chickenWelcome to “Cooking While Disabled 2023” on the What’s The Matter With Me? PodcastIn this episode, I find myself doing a lot of cooking while disabled which involves adaptation and interpretation of recipes that generally aren’t written with disabled people in mind. We’ve got to eat, regardless.
There’s an influx of produce at the house because we sized up our weekly vegetable box in the new year.
The kids are home from school which compresses the day, as they come home from camp in the afternoon and from then on it can be pretty difficult to concentrate.
Shout Outs* Shout outs to Eric & Traci * Shout outs to the people listening through to the past episodes- I know they are there when the number of episodes streamed increases appreciably while the number of individual listeners doesn’t increase
Art of jokes
View this post on InstagramA post shared by Gary Cannone (@garycannone.studio)
- Gary Cannone, Jeff Dunham & modernism
- Usually art jokes are not funny, but Gary’s are pretty good
- Don’t sleep on the Gary Cannone Interview Special from Season Six.
Bouncing Off The Walls* The kids are back in school- it was very hard to concentrate with them around, it compresses everything * I made chili * thought about how cooking while disabled is all about Adapting the recipe to your ability * Adaptations that make the recipe easier to execute while maintaining the spirit and making high quality food
The Iron Curtain Has Fallen* I went to the dentist and had my teeth cleaned by a cat
Shop ’til U Drop* I bought tickets for the White Elephant Sale
What We’re Watching
With supply chain shortages, prices skyrocketing and more shoplifting than ever before, positive customer relations are nearly impossible.
aetv.com/shows/customer-wars
- Customer Wars – people have bad shopping habits
Port Protection is home to the few who have left behind normal society and chosen a different life in a remote Alaskan community, where survival of the individuals and community cannot sustain without the other. The stakes are high. The land is rugged and unforgiving and the seas which surround Port Protection are cold and merciless.
imdb.com
- Port Protection– hermits in the woods
Keeping Up With The Joneses* We’re waitlisted for basketball
Welcome to “New Year’s Epiphanies,” Episode 1 of What’s The Matter With Me? Podcast Season SevenThis episode marks the transition to a new year, new theme song, and hopefully some new ways of thinking.
- The Season Seven theme song is “Beast”
https://soundcloud.com/hot-mops/beast* Listeners grew 144% from 2021 to 2022 * I advised my son not to brag on his presents and I think he heard me
https://twitter.com/johnhoppin/status/1610105614755311616* Weird Al = Weird AI? Maybe Weird Al should play Superman * I made pot roast and ate it the same day, Christmas eve. burnt some cookies * Christmas wars * New sleep apnea iron lung equipment- need to order new braces bc the ol;d ones are falling apart * New Year’s Epiphanies: there isn’t enough wine in a bottle of wine – shut up sound effect * Getting tagged in my family holiday photos. I’m not a straightforward photography subject and it gets worse when things are candid * In a severe mental crisis situation, I’m very charming * If we’re remembered at all we’ll be remembered solely in the context of the turn of the millennium * I’m a product of y2k * Dad butt-dials me * Last night for dinner we had tuna pasta
This Week’s Selfie
Taking a look back at the year on the What’s The Matter With Me? PodcastWelcome to the What’s The Matter With Me? Podcast “Year In Review” Season Seven will begin in the new year. Tune in for the year end wrap-up of Season Six, the biggest season we’ve ever had.
Listen for a year-end run down of all the things that crossed the bow of WTMWM? in 2022. It was a big year, a good year. Let’s get into it.
Holiday In Cambodiahttps://youtu.be/-KTsXHXMkJAEssential coming-of-age* My wife doesn’t know “Holiday In Cambodia” by the Dead Kennedys and that just goes to show that we’re different people
Fork Yeah* The rotisserie forks came and we made a chicken and it was pretty good * I think I can do better But the new forks are the ticket because before the meat kept falling and it wasn’t working And maybe we just burn one side and get the other 1 raw
Journeys By Myself* I tried to go Christmas shopping by myself and that was ridiculous * The Internet is such an easier place to go Christmas shopping and the only thing that will help you right now is the robots * I circled 3 times and parked right in front of the store- I lucked out and my plan worked. What was I doing there? I had to make a showing of some sort. * I went to the teenager shop and had the dude put together a little kit. * There was a family with a 15-year-old girl who was getting a nose piercing
Tossing & Turning* Definitely having anxiety and trouble sleeping * I think I always get this way at Christmas
Season Six Rundown* I wear the same shoes- Tune in for the big rundown of the top stories from Season Six.
This Week’s SelfieYear In Review
On the road againWelcome to What’s The Matter With Me? Podcast S6, Ep. 45 “San Diego Trip”In this episode, I'm on the road again for the first time in what feels like a long time. My wife and I flew to San Diego to attend her company's year-end holiday party. For the first time, I flew with my wheelchair. I got frisked and swabbed lot, but I didn't miss my flights, so it evened out and I made it home in one piece. It was not without hiccups, but we managed to have a pretty good trip overall, and I'm looking forward to traveling again in tyhe future.Booze Only Yankee Swap IVIt's Swap TimeWe came back to town and had the Booze Only Yankee Swap. The next day, we took the kids to see the San Francisco Symphony Youth Orchestra's holiday concert. There's some sound effects in this episode, like a plane taking off and some other stuff, but I tried to keep it to an absolute minimum, I swear.Shout-outsShout-outs to Empress Nami who wrote in to say, "I listened to WTMWM on my commute in. The ending....so many sound effects! I was laughing so much."Sometimes I'm just communing with Roy, who taught me how to do audio production. Roy always encouraged me to use more sound effects.Hey MOMA, do you have the what's the matter with me? Podcast?Forking HellThey think I only ordered one forkDescended From RoyaltyI took the kids to eat at Taco Bell and we met a strangerSan Diego TripWe flew to San DiegoI made a recording just outside the airport terminalAt The Company Holiday PartyI sat down at the table for the holiday party and it turned out to be the adult table because the CSO sat across the table and the CEO sat down next to me. Which was kind of gulp-inducing but they were nice people and they listened to me when I told them how great my wife was. The people at the company have an impressive track record of creating medicines. I saw the lab and it was a big glassed in structure at the core of a long rectangular one story building in San DiegoI flew back, and they swabbed and frisked me again. The TSA guy said to clean my brace with rubbing alcohol next time.Our Holiday PartyABV 30%+Booze Only Yankee Swap1980s STYLESomeone brought Peach Brandy to the Booze Only Yankee Swap and that created a minor kerfuffle. It was the fourth time we've had this party.GARBLED FLYERThe graphic design program spat out this garbled flyer and we can post it here because it doesn't list our address, or anything at all, really- it just says, "in" over and over.Trading UpI put in a bottle of Beefeater gin and I ended up with a bottle of Don Julio tequila. My wife traded a bottle of Cazadores for a bottle of Glenfiddich so it was a pretty good exchange for both of us and we very nearly felt bad about it.Someone brought peach Brandy to the booze only Yankee swap and that created a minor kerfluffleLebovitz spiced nuts & pretzels were a hit. Next time, spicierThe hot dogsSan Francisco SymphonyYouth Orchestra Holiday ConcertWe took the kids to see the San Francisco Symphony Youth Orchestra at Davies Symphony Hall. I used my chair and it was totally lucky that we got a handicap space just two blocks away. But, we hadn't charged the chair.We were there to see Kaito play the violin and we had pretty good seats in the first balcony at stage right. We had a good view looking down over the orchestra, and from our seats you look the conductor in the face as they played.
Working in the kitchen, making dinner, simple syrup, roast beets, and more.Welcome to What’s The Matter With Me? Podcast S6, Ep. 44 “Pot Roast and Polenta"In this episode, I cook pot roast and polenta. Recently, I've been spending a lot of time in the kitchen, laying low and taking care of my self. I'm having some anxiety but I'm trying to work with it. I'm taking a plane trip to SoCal and having a holiday party at my house later this week, so it makes sense that I am a little stressed. There's a lot of killer sound effects ion this weeks episode including people booing, laughing and cracking whips among many other cool sound effects like boing boxes and xylophones.In the Kitchenlast night we had pot roast and polenta. the pot roast braised at a low temp in the oven with the lid crackedPot roast guidance came from The Food Lab by J. Kenji Lopez-Alt.Tincanfish.com is free shipping for the month of DecemberWhat's going on in the worldNew York City to Involuntarily remove mentally ill people from the streets. I left there quite a while ago!I'm reading Curb Free With Corey Lee, a wheelchair travel blog, in advance of my flight to San Diego later this week.FeelingsI am feeling some anxietyI don't have a therapist any longer because mine retired and moved to arizonaI think it is connected to reinventing myself now that i am pain free and off anticonvulsed medicationHandsome selfie from Thanksgiving autopsy made everything better?Kitchen yogaI cleaned the drip tray on the grill and there was a lot of sour Smelling coagulated turkey fatAt the stationI drove to KFJC and I filed Some record reviewsCooking while disabledI made beef pot roastSimple syrup with a teeny bit of corn syrupAnd roast beetsI made a drink with absinthe, gin, meyer lemon, and syrupThere's thatI told my wife at least we didn't have to pay for tattoo removalPeeps r a big tripThis week's selfieGilfoyle shirt
Thanksgiving is over, happened and done but BBQ parts are still in the mail. We smoked the turkey.
In this episode, I'm getting ready for Thanksgiving, roasting chickens, buying barbecue parts, checking out tactical wallets, and more.
The turkey order’s in, and I ordered two. We’re going to use the rotisserie. I had pretty eyes at the Halloween party
In this episode, reading through "For Disabled Workers, a Tight Labor Market Opens New Doors" by Ben Casselman in the New York Times to find that changes ushered in by working remotely during the pandemic might have positive effects for the disabled workforce, and these changes could be long-lasting. Also this week, I continue to build stamina and regain my independence, taking some trips with the kids all by myself for the first time since July.
In this episode we read about visiting the doctor in a wheelchair, how it affects the doctor-patient relationship, and ideas for appropriate reforms.
Continuing my transition away from the protracted intense pain of Trigeminal Neuralgia that my successful rhizotomy has brought me. In this episode, I explore Midwestern Concepts like the work of the artist Marc Fischer and holding a listener appreciation party/convention at a hotel ballroom in Chicago.
I'm finally free of trigeminal neuralgia pain after successful rhizotomy surgery last month. It's been seven years that I've been battling the disease and it feels like a major victory.
Artist Gary Cannone was diagnosed with multiple sclerosis in 2013, and I had the chance to interview him about his work, advocacy, and being an artist with MS.
I made it through surgery- artist Gary Cannone preview- Helen Garner on fate- awkward dinner party conversation.
I'm getting ready for surgery, the kids are playing soccer, there's heat dome, and the podcasts that kids are making are something else.
I went for a walk with my daughter and my wheelchair tipped over. It didn’t seem to scare her too much– afterwards she swung on the swings
I said something ableist to someone I admire. What would I say (or not) now that I've spent some time working on my disability consciousness?
In this episode I battle face pain to go to a birthday dinner, take a family train trip, and have a date at the movies.
I'm feeling better, I don't have to whisper anymore. I went to see the surgeon to discuss RF Rhizotomy surgery.
Because of trigeminal neuralgia I can’t talk at a full volume, but I can whisper about Judy Heumann on PBS and Terry Wahls’ diet study.
Small electrical slashes and flashes come back, but a lot quieter since I had micro vascular decompression
WHEN IN DOUBT, GRILL IT OUT: In this episode, my friends came over to have a barbecue and I got some much-need support.
People keep asking me, "are you here by yourself?" I’m not sure when I should have someone with me when I go somewhere alone.
Going places in my chair- Hit my head again- Barbecue using the tray method- The Pepper Show is back.
In "I Admire You,", I used touchless pickup at Walmart with mixed results. Unexpected comments provide food for thought.
I have ADA grab bars in my shower but originalIy I didn't want them. They are big and ugly, but they save my butt all the time.
A reporter for KCBS News reached out and interviewed me about supply chain, multiple sclerosis, and Hoppin Hot Sauce.
I made the paper! “(He) has multiple sclerosis which he says makes it difficult to work in a kitchen environment. ‘But that didn’t stop me from cooking,’ Hoppin said.”
In this episode, "Bullies and Botox," my son is getting bullied and I had Botox. Plus, the Sam Kinison Auto Parts Jingle
I'm imagining a person dressed in head-to-toe Why Be Normal? gear- fanny pack, sweatpants, sweatshirt, hot tote bag, flip-flops and sunglasses.
i had a birthday dinner and didn't wear a mask
Shout outs to the ceramicist brian R. Jones who likes the longer episodes- he makes the stuff at brianrjones.comhe hangs out in a ceramics studio. i attended Alfred University for a single semester and I got him and Steve theretry to calm down and go slowerI revisited the last night for dinner journal, it had been 13 months. Last night For dinner we had left over meatloaf and martini's made with cheap gin but at least there was plenty of it5 oz gin to 1.5oz dry vermouth, garnished with banana peppers. it wasn't very goodme & my wife: Ronin commonsense media sounds like the answer is, sounds fine/ nobunch of ex-govt spies fighting over a briefcasewent over it last time: Elon musk is named after a smell, On the other hand John Hoppin is the name of a less wealthy and less popular smell that doesnt own twitterI'm riding the exercise bike 2-3x per weekI got asked by another parent in San Leandro if it had happened to me recently and for a moment i wasnt sure if they meant the wheelchair or MSi told them that i had the wheelchair almost a full year before i would ride it around in publicit was recommended to me by an occupational therapist at the stanford neuroscience a couple years before thatshe told me it would help me get there- not spend my energy to get therei'm tired of falling and hitting my head and having to get staples in my headReading foreign cuisine cookbooks- Ethiopian smoked milk or waterGoing to dinner at a Moroccan restaurant on SaturdayMy wife wanted to support the idea of journeying to EthiopiaRoger Maris visited JFK in the white house in his capacity as MS Society's national campaign co chairman in 1962Last night for dinner and the night before i had pb&j for dinnerwent to my 2nd kfjc meeting since corona, raided the spliff binWet leg, kyle ransonTook the kids to baseball, made dinner, all by myself but i had help. The burger place closedi was afraid i would lose my licenseDmv workedHayward dmv was coolthe guy had a hat that said oldies car club and the bull was scrunched up like anthrax - he told me i should work thereso i'm afraid tommy lee jones is going to pull me out of line so he can show me some of his techniquesignoring disabled people all the way up to euthanizing them are on a spectrum together (like the way microagression and out right aggression) are both kinds of discrimination
Need advice about a wheelchair lift for the car, i know there a re listeners who use wheelchairs, i need to get a machine that takes my chair out of the car bc i dont like someone doing it who is either a woman or older than me.its for the opticsHave you heard the sound of the atmosphere dragging across the EarthI went to birthday dinner in San FranciscoI had a 3 hour mriThen i had rods drilled into my jaw
It’s the What’s The Matter With Me? Podcast Birthday Special Episode, featuring Elon Musk, Chowhound & chicken sandwiches
In this episode, I went to the first radio station staff meeting since coronavirus, something I've dearly missed since the start of the pandemic.
Seeing hardcore punk-noise-rock veterans Lightning Bolt play at New Parish in Oakland for my first show since the start of the pandemic.
After that Oscars slap, what to expect when you go into a comedy club as a disabled person. PLUS, bad food, hit my head and The Dawn Of Everything.
We had a Sunday itinerary- birthday party, BBQ and baseball practice. I am accessing my affinity group.
New tests show T cell immunity. PLUS New pee pill prescription, indoor cycling, and lonely birria.
In "Wee Man Has Friends," Wee Man Strikes A Chord. PLUS, disabled punks, Agnes Martin, choriço, Botox and The Red House (1947).
Infusion, short roll, little league, Temporary Services, Sunday sauce- how did you spend your President's Day vacation?
Disabled hikers are getting outdoors, not rinsing the dishes, antibody test results, and staying simple in the kitchen
One-handed cooks and one-armed chefs to the kitchen: we’re looking at accessible cutlery, from knork to splayd.
Two years after my surgery, checking in with how I’m feeling. Also, tattoo ideas, gettin' paleolithic, different chorizos.
Epstein-Barr virus may be the leading cause of multiple sclerosis. I have a lot of leftover borscht.
In this episode, "Omicron Isn't Milder For Everyone" I'm reading op-eds, cooking borscht and wading through unpredictability.
I wear the same shoes all the time because they fit into my AFO (ankle-foot-orthotic) brace and in this episode I let off some steam about it.
I went back to the gym and only some people wore masks. Guess who? PLUS, Dad Bod Rap Pod, “People With Disabilities” movie review.
Thanksgiving was a success. Movie review: “I’m No Longer Here.” The gym is mask-optional. People are likers; they want to like things.
The Plastication was yesterday. Thanksgiving is tomorrow. I’m trying to delegate and avoid stress.
The Plastication was yesterday Thanksgiving is tomorrowI’m trying to delegate and avoid stress
We ran out of Original Flavor. I made vaccine appointments for the kids. I’m putting together a CD marathon for the radio.
We celebrated Halloween with our friends and their kids. Some things had changed, but it’s not too bad. Plus, cheating guacamole.
A meeting with my doctor brings me new understanding. I am on immunosuppressants. I am more likely to catch Covid-19 even though I am vaccinated.
I got a new primary care physicianGot the flu shotHad a meeting with my doctor that convinced me that I am an immunosuppressed personBeen playing "Hamilton" tunes on the pianoMaking dark, creepy music
I went to the radio station, to the independent living center and joined the gym. I’m beginning to advance.
I went to the radio station, to the independent living center and joined the gym. I’m beginning to advance.
Everything is receding like the ocean after the wave has crashed and it’s pulling your feet. The gym, hot sauce, supply chain- things are in recession.
Everything is receding like the ocean after the wave has crashed and it’s pulling your feet. The gym, hot sauce, supply chain- things are in recession.
I moved past my fear of driving by breaking it down into small steps and listening to my inner Phil Jackson.
I miss having barbecues and I’ve got to get over it. Cat meowing in the middle of the night. Children are like lice.
Hearing the sound of missing teeth. Night driving. Hanging out at Cato's Ale House felt like a win.
We're going on a family vacation and it's something to be proud of. What if this was a religious or cult podcast?
In this episode,
Where's your head at? I need to record my activity as an Amazon seller in Quickbooks. It's creating stress.I ran into a lady at the gym and forgot her name. Her name rhymed with her husband's and was ambiguously gendered.
Listen to the episode to hear how it all went down.
BEGIN TRANSCRIPT
JOHN HOPPIN: Where's your head at? It's here. Hey where's your head at? It's here. On my, on my neck. On top of my neck. In some ways in retrospect it seems so simple to write a massive hit. Where's your- singing Where's your foot at? It's on the bottom of your leg. You have two of them. Anyways.What's the matter with me? I wanted to check in here. Really what's going on with me is I'm kind of feeling isolated. And I think it has to do with not being able to get my communication out there and really that all has to do with that I've gotten sidetracked about trying to go on Amazon and in order to sell Hoppin Hot Sauce on Amazon, I have to have what's called a Quickbooks Integration. Anyway, I have to get Amazon to be like, "You sold this," and my Quickbooks to like be like. "Oh I did?" and write it down for me. The accounting is like mindnumbingly complicated. And I've been stuck trying to figure out what Quickbooks Integra- What I could use to integrate my amazon into my Quickbooks. and that sounds about as great as it sounds. But I 've been really stuck there and it's making it hard for me to like sell my product on Amazon, because I don't want to sell a lot, because I have to figure out how to account for it and it's kind of bottlenecking me in a way and I can't figure out what integration to use and it's really stressing me out and I really wanna make the Pepper Show and other stuff in the way of doing that but I'm spending my time trying to think about accounting. Which how would you feel if you. I'm not an accountant. How would you feel if you spend all your time trying to figure it out? Man. It's awfully complicated. I just need to know what integration to choose. There are a lot of different choices. And I don't understand what's different or which ones I should use. And it's not like like Shopify, that was easy. I had friends who used Shopify. They were like, "you should use shopify to sell Hoppin Hot Sauce online." Boom, did it- easy.Quickbooks Amazon Seller Integration, I haven't been able to figure that one out. I don't have a guide, and what's available online is a bunch of people's different opinions. Surprise, surprise!Well anyways, What's The Matter With Me? Podcast, my name is John, I'm a husband, father, small business owner, radio Dj, podcaster, and I have multiple sclerosis. I made this podcast to share what I'm going through. But like I said, today. It's all accounting. It's awful. I wanna try and s top talking about that now. What about that Where's your head at stuff earlier? It reminded me. I went to the ymca. Not the ymca, I went to the private health club. I t's.. it's new to me, it's different so it's kind weird and challenging but there's new experiences like they're older people at the private health club. And that's cool. I'm older so but they're older than me- they come from an older generation and people from different generations have different names like my generation you had hippie names kids sprinkled in there because their parents were hippies in the seventies and they were trying to just keep it going I guess. Keep the- guard the stone. Keep the hippie bonfire burning man so they have different names but older than me. You know like people that 're born in the twenties and thirties to have different names at one of the things.They have for those kind of people is often have names that are not assigned, the the gender assignation differs. So like, for example. I met this lady and her husband's name was Larry, and I was like - I met them both, and I was like, oh great, and then I promptly forgot t he woman's name and I remembered only that it rhymed with her husband's- h...
I'm getting more disabled and things are getting harder for me. My biggest fear is becoming voiceless and invisible.
Thank you for tuning in to the What's The Matter With Me? Podcast
In thise episode, "On The Zon," we discuss:
The barbecue worksThe sauce is on AmazonI fell at the gymWhat is Jeff Bezos’ phone number?
In this episode, I visit the cobbler to do some work on my AFO brace. PLUS: summer camp, driving, Flip A Coin Day
In this episode of the What's The Matter With Me? Podcast, "Crossing Boundaries," I'm going outside my comfort zone: selling on Amazon, submitting poems, riding paratransit, and more.
In this episode, I read two consecutive entries in the "What I had for dinner last night," journal. "Cooking While Disabled" means that I need to adapt my techniques in the kitchen so they work for my particular needs.
In this episode, "Crip Camp" movie review PLUS obscenity. ancient dramaturgy, jottings & more..
In this episode, I get certified for East Bay Paratransit. I'm fully vaccinated, and I'm ready to go back to the gym and the radio station after more than a year off due to Covid-19. Paratransit will help me get there. Shout outs to my art teacher, who steps in and gives me a little validation. I read some things I wrote down.
In this episode of What's The Matter With Me? Podcast, I receive a message from a psychiatrist who identifies some of the hurtful things my son was saying in Won't Be Ashamed as relating to the Oedipus Complex.
In this episode, we got vaccinated for Covid-19 at the Oakland Coliseum after hearing VP Harris had gotten involved there. The kids went with us, we drove up, it was easy, and when it was over it was a big relief. Plus, What I Had For Dinner Last Night and more.
Spring Vacation Is A Hoax
Or At Least Seems That Way
In this episode, it's spring break and the concept of family vacation appears warped and unrecognizable after a year of pandemic.
spring vacation is a hoax, at least it feels that wayI haven't got the coronavirus vaccine yet, but I willI keep a journal about, "What I had for dinner last night..."We're getting ready for grilling season
In this episode, my son tells me that he wants a new dad, one that isn't disabled, who doesn't use a wheelchair or a cane, and who is able to cross the stream by balancing on a fallen eucalyptus tree. I think it may be more-or-less normal for a kid to wish they had different parents, but it felt especially heavy that my kid was trying to hurt my feelings for having multiple sclerosis and being disabled. I pointed out that he was disability shaming me, that it was as if I had told him that I didn't like being around kids because they don't have driver's licenses, or know how to multiply and divide. My point was that there are things that we don't have control over and that it's unfair to blame us for them. I think he heard me, the wheels began to spin, and maybe he'll think this over.
Facial lightning returns. Time change difficult. Giant chandelier. Outdoor furniture. No heat. Sleep apnea. No one.
I moved to San Leandro. Season 5 has begun. I'm unpacking slowly and starting to plug in to the community.
Interview
Thoughtline Interview
In this episode of the What's The Matter With Me? Podcast, we're presenting an interview with newly-elected San Mateo School District Board Member Ligia Andrade Zuñiga, who is a disabled wheelchair user. I interviewed her because I thought it was remarkable for a disabled woman to win an election. It originally aired Monday, December 28th from 6-7PM.on KFJC 89.7FM on the Thoughtline public affairs program. This material was developed to bring under-represented voices onto the air waves at KFJC, in order to "promote and increase diversity at the station."
Powerful Representation
What Ligia says is very powerful, and it resonated with me, about how disabled people are invisible. My airname on KFJC is Hemroid The Leader. Please do not be alarmed. it is just an alias.
Connections
Interviewing Ligia was suggested to me by Alice Wong of the Disability Visibility Project, who we've covered before, and hopefully we'll hear from again.
Interview someone and learn about them
In The Habit
We're nearing the end of four seasons on the podcast. Like I said last time, I'm thinking of changing or stopping it. For now, I'm still in the habit.
I recorded an interview with the activist Ligia Andrade Zuniga that I hope to air on KFJC.
Reflecting on the mental health epidemic that accompanies the coronavirus epidemic, the podcast takes an unexpected turn.
It comes back on track at the end, courtesy of the words of Marc Maron.
Cya next time. As always, get me via the Contact Form. Hasta luego!
I'm going to a new place
Things are changing, from my home bookstore to the restaurants I'll eat at. I feel positive about it, but I'm having anxiety in the face of so much change.
I think what I mean by "home bookstore" is the bookstore where I'll go most often, every week or so.
Have you heard the news?
Updates to a few recent episodes. Recorded in the backyard
New Support
Good And Bad
moving to san leandro
After two of my friends message me I realize that with my move to San Leandro, my support group will evolve. Which I manage not to mention in the episode, is totally scary!
I recorded most of the episode in the backyard, mostly off-the-cuff. The audio track features airplanes and windchimes.
STAY TUNED for extended shout-outs.
We son some awards.
Bad news first: the kids are bad, they run away.
Hoppin Hot Sauce won some awards.
This week's episode takes place in a cable car.
Both
Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.
What's The Matter With Me? Podcast
SETTING: Shopping Mall, Spooky Castle, "Run In The Wild" by Hot Mops.
The BAD: Trigeminal Neuralgia came back.
The GOOD:
Halloween is coming.
BEGIN TRANSCRIPT
JOHN HOPPIN: What's the Matter With Me? What's up? You are tuned into the What's the Matter With Me? Podcast. It's the real deal. This is it. I'm inside. I'm in the house.
This is a new jam pumping. I made this, and put it on SoundCloud. It's called Run in the Wild. I can't run anywhere. I don't really have a business making a running song, but I did it anyway. And it's kind of pointless and meandering, but I made it to relieve stress. That's how I make this music, and it's kind of stressed out music.
sound of a shopping mall
Anyway, let's go into a shopping mall. Man, good to get out of that stressful music scene, and into the shopping mall. Remember going to the shopping mall? We can't do that, I guess, or we don't, or maybe people are going, who knows? I'm not going to the shopping mall, I'll tell you that, even though my doctor said I could maybe survive Coronavirus. Fundamentally, he's like, "You aren't at greater risk for hospitalization. In other words, maybe you'll survive." It's the season. Let's get spooky. Let's get spooky.
spooky music plays
Yeah. All right. Well, it's that time. In our family, no one's giving candy, really. It's a bummer. Halloween is a bummer for the kids, for sure.
moaning ghoul
Man, that guy was bummed. All those people, they're bummed out. Anyway, I have good and bad news. That's what this episode is all about. Things are good and bad. It's spooky, but it's good and bad. It's a mixed bag. A spooky mixed bag.
Okay, so I've been trying to update this podcast and record a new episode every week. I just want to record more, but the reason why I couldn't record an episode is I have had a relapse of trigeminal neuralgia, again. They've performed surgery on me. They've been inside my cranium with micro machines, doing things twice now, and it came back again. In January is when I had my surgery, or February, my second surgery. And at that time, one of the hardest things was not being personally crushed during the relapse of trigeminal neuralgia, because of how much work I've put in to get away from it. And it's still here, shocking me. Thor's lightning bolt is shocking me in the face.
spooky sounds
Ooh, spooky, bad. I couldn't talk. I couldn't eat.
I've eaten a liquid dinner for the last three nights. And then before that I couldn't eat anything. I didn't brush my teeth that night. Come on, I want to brush my teeth. Personally crushing.
I got in touch with my doctor. I had a doctor's appointment yesterday, and the doctor said, "Hey, why don't you switch your medication? You're on the second line medication, really for no reason." So I did that. And the last time I felt any pain was five in the morning, this morning. And it was very slight, it was just a little, which is still a lot. It still hurt like these people. I felt like them.
demonic laughter.
I mean, that guy's laughing about it. I didn't feel like laughing about it.
But anyhow, I went to the doctor, switched the medication, and that seems like it's doing the trick. And it's not the same as it was before the operation. It's lower. It's a three or a two, if before it was a 10. So the pain is different, but it's still just very intense. And it was crushing to have it come back, right? So that is the bad, but it is on a good foot. It's going somewhere.
I ate oatmeal for breakfast. Last night, they had split pea soup. I wanted to have polenta and mushrooms. I think I could take down some polenta and mushrooms. My mom made shepherd's pie. And I ate it and it hurt pretty Bad, but it wasn't awful. And it tasted very good.
Okay.
I got my computer back from the shop, and I'm back up and running againShout-outs to Etan RechraI made some production work for KFJC, featuring my buddy Jack Tar
JOHN HOPPIN: All right, what's up? Thank you for tuning in to What's The Matter With Me? Podcast. Let me find my notes. It's good when you have notes. When you make a podcast, you want to put together some notes ahead of the time. Or not, I guess. To each his own, or her own.
I think that's what qualifies as a meandering introduction. Thank you for tuning in to the What's The Matter With Me? Podcast. My name is John. I'm 41 years old. Husband, a father of two, small business owner, review, DJ, podcaster, and I have Multiple Sclerosis. So, I made this podcast to share what I'm going through.
Thanks for tuning in. Past episodes can be found on Apple podcasts, at whatsthematterwithme .org and wherever you want to listen to podcasts. What's The Matter With Me? is there. I might put myself somewhere. Somewhere peaceful or by a road or in a machine shop or somewhere else even. In the middle of the ocean. I have no idea. I've been putting myself somewhere.
I don't have to this time because I got my computer fixed. Thank goodness. Thank goodness. I got my computer fixed. The power button was broken. John-John, my son, got upset. He smashed on the power button. I was, "Stop playing ROBLOX. Turn that off. It's time to take a bath." And, he was like, "Aaaah." He was all grunon. Grunon is grumpy in Spanish. So, it's a vocabulary word because El Trol is muy grunon. He lives under the bridge, which is called el puente. These are all my Spanish vocab words right now for second grade. The three little pigs and los tres cerditos lopez. I'm not a native Spanish speaker although I speak Spanish as much as I can. But, my son is in dual language Spanish immersion.
Anyway, I was, "Turn off that ROBLOX." And, he was, "Argh!" He was being grunon. Really grunon and he punched on the power button. And, then the thing never turned on again. The guy at the… The computer guy, I've got to give him a shout out with his name, man. I already gave him a shout out, but I'll give him another one, man. Michael Lopez was Super Tech Geek. That's his name. Super Tech Geek. Look him up, he's on Google or with the internet. My Super Tech Geek, Michael Lopez. He's in downtown San Jose. He fixes my computer and this was the second one I brought to him, man. I was concerned that he was going to die of coronavirus and have my computer and I wouldn't be able to get it back. So, I will warn you, getting computer repair right now will stress you out. You will worry for the health of the computer repair man.
You're like, "I wanted to repair my computer, but I hope he's not in the computer repair shop too often. I hope he hasn't seen too many people, even though a lot of people are home and trying to get the computer working for the Zoom or whatever." Super Tech Geek fixed my stuff. It turns on, so now I'm recording on my regular microphone, my regular way. I don't actually have to use this sound bed. I don't know if I'll use one, that's some suspense. You'll see. I'll probably put a sound effect. Let me get another sound effect. I liked that last time. Here, sound effects.
sound effect
What's The Matter With Me? Podcast has a Facebook page. Anyhow, I've written on it, "Reply to this post and I'll give you a shout out in the next episode of What's The Matter With Me?" And, I think it was a couple episodes ago if I'm honest and so I'm a little bit of a lying slacker. Now, I'm not certain, this is not a real name because it's Nate Archer backwards, but a thing called Etan Rehcra put, "Keep up the good work." So, shout out to you, Etan. Etan, that's what we can all hope in life to be doing. Eat, sun, water. Etan Rehcra. Shout outs. All right, go ahead and get your computer fixed and check out my Facebook page, I guess.
Last time I was talking about how my doctor told me,
Thank you for tuning in to the What's The Matter With Me? Podcast.
It's kind of loud outside today, so I put myself in an auto body shopCedar Room reordered Hoppin Hot SauceKFJC Fundraiser is happening nowMy telemedecine appointment was a big reliefI bought some music from Sahel Sounds' bandcamp page
JOHN HOPPIN: Thank you for tuning in to the What's The Matter With Me? Podcast.
My name is John, I'm 41 years old, husband and father of two. Small business owner, radio DJ, podcaster. And, I have multiple sclerosis, so I made this podcast to share what I'm going through. The old episodes can be found on Apple Podcasts, at whatsthematterwithme.org, wherever you listen to podcasts, it's there.
It's loud outside today, there's birds, there's planes, there's people in the yard landscaping, blowers and stuff. It's fall and leaves are falling in the wind so things are happening. So, that means wind chimes. Yeah. So, it's loud outside today. So, I'm going to put myself in an automotive machine shop to try and cover up the noise. It's nice out here. It's sunny. It's low seventies and it's not very smoky today. So, I'll take it.
Shout outs to Rocky. Thank you for listening, Rocky. She's been listening since the first episodes. She was one of the people, I emailed her when I first started this, I didn't know anything about how podcasts work. So, I just started recording things into my phone and emailing them to people. That's episode one, check it out, it's in the back episodes.
Last time I talked about the Cedar Room in Campbell, that it was a new account for Hoppin Hot Sauce, well, they reordered and I delivered yesterday. So, shout out. I saw Louis there. Louis is the chef. He's been my original account at Park Station Hashery. It was good to see him; it was good to see someone you know, even if they have a mask on, in the middle of the delivery. To see a friend of mine was cool.
The KFJC fundraiser is going on for the whole month of October, go to KFJC.org/donate and support community adio. You get a cool t-shirt while you're at it. Shows people you have heard of our radio station and perhaps listen to it even.
I told you last time about my telemedicine appointment, it went pretty well. It was kind of weird. Of course, I went to the wrong link and there was an information technology kerfluffle and the lady, the nurse called me and was like, "Where are you?" And, I was like, "What?" I thought…" Anyway, it got figured out it was a good meeting with my doctor. Probably the most interesting thing that happened was when I asked him if I was extra susceptible to coronavirus because of my pre-existing condition of Multiple Sclerosis. You hear about it on the news people with preexisting conditions are vulnerable and I'm thinking, "Well, I have MS."
So, I was freaked out because of the medication. I know that MS is about your immune system and the medication effects that. He gave me good news though, he said that I personally, and I'm not, this is not a prescription for you. This is about me personally. Ask your doctor. He said that I personally am not at increased risk for hospitalization because the medication I take works on my B cells and that part of my immune system. But, that my T cells were not effected and those were the ones that would marshal my immune system response. So, that was a huge relief.
I've been afraid that if I contracted coronavirus, and my immune system wouldn't respond and I would die. And, I don't have any big plans in mind for changing my behavior, it's all about wash hands and wear a mask. But, that news is a relief. So, it was a good thing.
I purchased some music, downloaded it and they'll be sending me an LP as well from a thing called Sahel Sounds on Band Camp. They were having one of those pay what you will sales. So, they come out with these really interesting compilations of music that I guess they download from Saharan cell phones.
Tuesday Appointment
KFJC fundraiser begins todayMy kids are with my mom and my stepdad DaveYesterday I sent some hot sauce to a new local accountI'm going to have a video meeting with my neurologist on Tuesday
JOHN HOPPIN: Yes. Thank you for tuning into the What's The Matter With Me? Podcast. My name is John. I'm 41 years old, a husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis, so I made this podcast to share what I'm going through.
You probably have noticed I've been using sound beds, like the sounds of traffic and a fan. I've been using weird sounds because I'm recording all of these episodes on my phone. The power button on my computer is broken and my computer is in the shop. So I have to record this all on my phone and then I put it together on the laptop. So I've been putting sound beds. They're like ambient sound beds and sound effects underneath these episodes for kind of no reason, but I hope you enjoy it. It's kind of pleasant. It scratches some itch. Check it out. I'm going to put the sound effect right here.
sound of a dog barking
All right, you like that? I thought so.
I've got a lot to talk about today. Let's see, the KFJC fundraiser begins today. My kids are with my mom and my stepdad, Dave. Yesterday, I delivered a case of hot sauce to a new account in Campbell and I'd sent some other ones. I'm going to have a video meeting with my neurologist on Tuesday. Okay, so we got a lot to cover. Let's get started. Thanks for tuning in to the What's The Matter With Me? Podcast. Old episodes are on whatsthematterwithme.org and on Apple Podcasts and wherever you listen to podcasts.
The KFJC fundraiser begins today. This year, I did not do a lot of vocal acting, even though I read you those scripts that I wrote. Now, other people acted them out and read them. I just read them to you to show you that I'm writing.
This year I focused more on writing and I did some production. I produced a spot based on a script that I read in the last episode. Do you remember I read something about your participation is not required? Check it out. It's in the last episode. I contacted a fellow DJ, another DJ at this station, named Phil Phactor. I contacted him and he read this script into his phone and sent it back to me just like I asked him. It's cool, the internet power of things. So I sent him the script. He read it, he sent it back to me. It sounded good so I put him in a bowling alley, a couple of sound effects, but the bowling alley, it's for an American Gothic vibe. So I'm going to play it now for you.
HIL PHACTOR: In our society, everything is fine. We are free. We are safe. We grow and prosper and we all take part equally. Each person has a voice and none goes unheard. Leadership has our best interest in mind. The best things are the most popular. They are worth the most money. Everything is taken care of. That's why there is absolutely no need to support a not for profit broadcast FM radio station by donating online at kfjc.org. Your participation is not required.
JOHN HOPPIN: Okay, so fundraiser at KFJC is happening now. You can find all about it, kfjc.org. But I just wanted to share that with you and that's my creative thing. So many shout outs to Phil Phactor, much love from Hemroid The Leader to Phil Phactor.
My kids are at my mom's house and my stepdad, Dave. They're over there and they take them Fridays after school and return them Saturday after lunch. We're all under a lot of stress right now. I'm sure you guys are the same. It's really helpful to break up our family even if it's just for one day a week, because I mean, we're all on top of each other, and just one day a week with some different faces is a relief and so I'm so thankful for help from my family.
So, I do things for myself. Yesterday, I delivered a case of hot sauce to a new account in Campbell called the Cedar Room. It's like a restaurant and bar next to the movie the...
The annual fundraiser is coming up at KFJC starting at the end of the month.I've been recording fundraiser spots for about 6 years. my first one was about a person taking a taxi. I do one or two a year. I always enjoy writing, and every good spot starts with the script.This year, I wrote four, and I read them in this episode, along with an older one from 2016 that resonated with me.Writing these scripts has been a positive creative outlet.
BEGIN TRANSCRIPT
You are tuned into the What's The Matter With Me? Podcast. My name is John. I'm 41 years old, husband, father of two, small business owner, radio DJ, podcaster. I have multiple sclerosis, so I made this podcast to share what I'm going through. Fundraiser at KFJC, it's coming up. I want to focus on the radio this episode, because I've been doing a little work with that and I want to share it.
Fundraiser is coming up at KFJC at the end of September, to the end of October. I've been recording fundraiser spots for KFJC around this time every year for about six years. My first one was about a person taking a taxi. I do one or two every year or so, so I've wanted to read you some of the fundraiser scripts.
Because we're kind of distant, I haven't been able to go into the production studio, so I've been producing at home. On Tuesday nights, they've been having these production meetings with people that basically gather on Zoom, and then we bang out some spots. I know from some experience that a really useful thing when you're trying to make fundraiser spots is to have scripts for them. You need something to go. You can't just make it up. I came to the meeting. I had four scripts ready and I wanted to read them to you here, so hold on a second.
I'm reading my KFJC fundraiser spots, the ones that I wrote for this year on the What's The Matter With Me? Podcast.
On KFJC, they know me as Hemroid the Leader. Hemroid the Leader, I tell them. You are listening, you're tuned in the KFJC. I am Hemroid the Leader. I came up with that when I was 13 or 14. In the CD, or actually I have it on cassette tape, the insert that came with the album De La Soul Is Dead, which is the second album by De La Soul, what was their hit song? Me, Myself, and I. "Just me, myself, and I." Anyway, that was their first album. It was a big hit. Their second album was weird and strange. It was not a hit, and inside it… Although it's totally a great album. I'd recommend De La Soul is Dead. Like a lot of albums that aren't hits, it's a really good album.
It has in the back, they have skits. A lot of rap records at that time had skits or interludes or whatever, and the skit number five… First of all, the album was almost 30 tracks long. So right there, it's not a hit. Check the no. Is this enough, 30 tracks? Probably none of them. You hope one. That's so many tracks to have none of them be a hit. Anyway, on the last skit, skit number five, I think it is, five or six, Prince Paul, who's a famous rap producer is playing the ringleader of this crew that is starring in all the skits. So it's like a prog album, and we're on the fifth skit with this team of guys and they get into an argument. Prince Paul says, "I'm Hemroid. I'm the leader!" And so right then when I was 14 or 15, I got my first radio show on KSCU, Santa Clara University, and I was like, "I'm Hemroid the Leader." So when I moved back to the Bay area in 2013, 2014, started getting involved with KFJC. And I was like, "My name is Hemroid the Leader."
So this, I want to read to you, are Hemroid the Leader's fundraiser scripts. I brought them to the meeting on Tuesday, and I was like, "Hey guys, anyone want to record these?" and they did the Zoom screen share thing. I showed the scripts, and I got all different people. I didn't do any of the voices, which is good. I love hearing people interpret the stuff I write. But anyway, here it is. Here's the script. I'll read it to you now. Hold on one second. Hemroid the Leader, switch on.
Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.
I saw the surgeon who performed my microvascular decompression surgery.I went to my Ukrainian dentist a couple of weeks ago, she is the one I called, “The Iron Curtain.” I am not in trigeminal neuralgia pain anymore , and my life has changed for the better.Now that I can shave my face, I've been wearing a mustache.I am a lot happier.
Disabled voices are just like regular voices, just like anybody. Using our voice makes it stronger, and it's doubly true for disabled people who've been disenfranchised, and hidden away, and censored. I think that's what I was getting at about being an artist. It feels like censorship, to be rendered invisible. I think it's a particular experience to go from being able-bodied and normal to being outside the norm, not pictured or represented, to have yourself kind of … I felt myself being erased and my viewpoint being hidden away, and I felt it live as it happened.
Compounded trauma is when things make us upset, because they remind us of traumatic situations that we've experienced before.
I think we all need to put in effort to get ourselves out there, because it can be hard on your mental health to be so isolated. It's important to be part of a community, and be involved, and have exchange with people.
Day 67 COVID-19 self isolation
I'm working in the garden, while wearing my new AFO brace in this episode of the What's The Matter With Me? Podcast.
Two months into coronavirus self-isolation, I'm thinking about how this is an important time, one that we'll remember forever and that our kids will also remember. In this episode of the What's The Matter With Me? Podcast, I'm thinking about the importance of this time.
Welcome back to the What's The Matter With Me? Podcast.
Day 42 of Covid-19 Coronavirus quarantine finds me thinking about the value of disabled life.
What is the Principle of Non discrimination?
The principle of non-discrimination seeks “to guarantee that human rights are exercised without discrimination of any kind based on race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status such as disability, age, marital and family status, sexual orientation and gender identity, health status, place of residence, economic and social situation”.Committee on Economic, Social and Cultural Rights, General Comment No. 20, Non-discrimination in economic, social and cultural rights; 2009.
Do disabled people deserve assistance even though they may require more resources than the 'average patient?'
(When too many patients are in urgent need at the same time), some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around, those who need more than others may be in trouble.Ari Ne'eman, 'I Will Not Apologize For My Needs,' New York Times, March 23, 2020.
Begin Transcript
JOHN HOPPIN: Yes! You are tuned into the What's The Matter With Me? Podcast. My name is John, I'm 40 years old, I have MS (multiple sclerosis), I'm a father and husband, small business owner, radio DJ, podcaster. Right now I'm 40 days into this coronavirus quarantine, on week five at school. Anyhow, it just feels like we're inside forever. I think you all know what I'm talking about, so I've wanted to get in touch. I have had some stuff on my mind.
First, I want to bring in this idea of the principle of non-discrimination. It's defined by the World Health Organization as, the principle of non-discrimination seeks to guaranteed that human rights are exercised without discrimination of any kind based on race, color, sex, language, religion, political or other opinion, national or social origin, property, birth or other status, such as disability, age, marital and family status, sexual orientation, gender identity, the health status, place of residence, economic and social situation. That was defined by the Committee on Economic, Social, Cultural rights in 2009.
This whole outbreak is going on, and it's made me think about the value of disabled life. First, that a disabled life is worth living. I think it's obvious my life rules and it's worth living. I mean it's my life, you can't take it from me. So why think about this stuff? Well, I've read this article called, I Will Not Apologize For My Needs, by Ari Ne’eman, in the New York Times of March 23rd 2020. He writes:
Times of crisis ask us who we are as a country. As hospitals prepare for shortages in ventilators and other scarce medical resources, many people with disabilities are worried about the answer to that question. In Italy, doctors are already rationing access to care on the basis of age and disability. The Washington Post reports that many states are considering how to implement similar rationing measures here. Though almost everyone would agree doctors may deny care that is unlikely to benefit a patient, there may soon be too many patients in urgent need of lifesaving treatment and too few resources to treat them all. When that happens, some are proposing to send the disabled to the back of the line. States across the country are looking to their Crisis Standards of Care plans — documents that explain how medical care changes amid the shortages of an unprecedented catastrophe. While each is different, many have a concerning common attribute: When there isn’t enough lifesaving care to go around,
Day 23 of self-isolation
I'm going to try practicing some acceptance to get through this terrible experience of confinement, which is worse than usual.
Begin Transcript
JOHN HOPPIN: You are listening to the What's The Matter With Me? Podcast. My name is John. I'm 40 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. So I made this podcast to share what I'm going through.
Let's see. Last episode, recap: I was just rambling about stress. I was stressed out, but I think it's 12 minutes long or something. I couldn't even edit it. I'm not really editing things too much right now.
I wanted to talk today about Acceptance. The family is all here. I'm baking bread right now, to teach them how to make bread and how yeast works. Right now it's been punched down and reformed and it'll bake in about an hour. So it's rising, getting ready to bake.
I wanted to talk about acceptance. Because of what's going on, it's totally out of my control. So much stress. I wanted to think about acceptance. I've had to focus on that.
I'm really uncomfortable in my body a lot of the time. My hand is clenched up and my biceps has spasticity, along with weakness in my right leg, my whole right side really. It's kind of uncomfortable, especially when I'm trying to get comfortable and go sleep, lay there and quiet my mind. Kind of do the same thing I used to do in a yoga. I would think about lengthening my spine and stretching out. It's hard because if I feel really uncomfortable a lot of the time in my own body, then that physical discomfort makes me really upset mentally and I have to deal with that. Hold on a second. I'm going to go inside because I'm cold.
All right. I'm in the garage. So, discomfort can kind of take over my thoughts when I'm laying there and I have to practice that yoga lengthening of the spine, meditation and focusing on my breath and I'm trying really hard. But you know what can be really helpful is to practice acceptance and to say, "Hey, this is how I'm feeling right now," and that's what's going on. I'm having feelings and emotions and that's all it's happening. I can be mindful and be accepting of my own feelings and just feel them and it's okay and to move on from that. I wanted to talk about that, after that really stressful episode where I really let it all out.
So I want this practice some acceptance. That's what I'm going to try do and try and get through this terrible experience of confinement that is worse than usual. All right. Thank you for listening to the What's The Matter With Me? Podcast You can get past episodes on Apple Podcast and at whatsthematterwithme.org. Thank you for tuning into the What's The Matter With Me? Podcast.
Day 14 in isolation
coronavirus isolation has my mind stressing, the amygdala, anion mal brain underneath the hippocampus, the thinking part of my brain.
Looking around at the newspaper, it seems like there's a lot of nutso animals on the prowl right now in our culture and around the world. And it's a lot of stress. It creates this stress, it's bad for MS, it's bad for many things. Almost anything that's wrong with you, you could do without some stress to deal with it, you know? So, people are not functioning in their highest level right now because of all the stress.
Begin Transcript
JOHN HOPPIN: All right, what's up, what's up? Thank you for tuning in to the What's The Matter With Me? podcast. My name is John. I'm a husband, a father, 40 years old. Feels older sometimes. I'm an MS patient, and I'm a small business owner and podcaster/radio DJ.
But I'm not really much of anything except a husband and father right now. That's been my focus for the past 14 days I've been at my house. My wife has been doing the grocery stuff and the toilet paper war, and all of this stuff; it sounds horrible.
I've been at home with my kids. We go out on a walk and usually, I use my wheelchair and then go around my neighborhood. I told you about that last time. We're still pretty much doing that every day. I had Zoom chats with my kids' school. Hold on a second, it's too cold out here. Sun is shining, but the wind is starting to blow.
All right, What's The Matter With Me? podcast, we're back. Thank you for staying with me. I went inside and I got a Pendleton, my Pendleton wool sweater. It's so comfortable and stylish, and it makes me happy. I got that on, I'm in the sun, things are okay, but I just wanted to say it's been two weeks I've been in my house, I'm getting some walks around pretty much on the daily. Today I finally took a walk without the chair, and that made me realize how much I'm missing the YMCA, and I'll get back there.
I wanted to make this episode to check in. First of all, I got to give a big shout to Patrick. Thanks for checking with me, shooting me an email. He emailed me via the contact page- email me there, and I will say what's up to you. What's up, Patrick? Patrick's always listening.
I also wanted to give a shout-out to Rocky. Rocky is always listening and connected, and shout-outs to all the other people who listen. You know, it's great to hear from people and I wish I could hear from everyone, but it's just the way it always goes in advertising, right? Couple of people write you, you know other people were listening, getting down the same way; they just didn't write you. So, I wanted to give a shout-out to all you silent lurkers. Thank you for listening to the What's The Matter With Me? podcast.
Right now, you know, multiple sclerosis can get aggravated under stress, and right now it's a very stressful time, and everyone functions worse under stress. We start getting dominated in our brain by our amygdala, which is like our animal brain, and it releases cortisol, stress hormone. It increases our fight-or-flight response. So, we're not creating positive thoughts, we're not in our hippocampus, we're not in the brainy part of our brain. I know we've talked about it. It's the part on top that looks like a brain.
We're instead all operating under stress, we all start operating from that weird, little brain under our big brainy brain. And so, we're all stressed out and fighting or freaking out. At least, I am. I mean, it's a stressful time. I haven't been able to go anywhere. I'm kind of like a nutso animal, right?
I think, looking around at the newspaper, it seems like there's a lot of nutso animals on the prowl right now in our culture and around the world. And it's a lot of stress. It creates this stress, it's bad for MS, it's bad for many things. Almost anything that's wrong with you, you could do without some stress to deal with it, you know? So,
I recorded this message on lockdown. I can't go anywhere due to the coronavirus pandemic and my multiple sclerosis condition. I'm in my house with my family, trying tto educate my kids and keep their development on track. It's a crash course in distance learning, e-learning, online education, or whatever it's called, sooner than any of us thought.
The orthotist came up with a second brace concept, and I went back for a fitting that left me feeling a bit dejected.
She took a video of me walking in the examination room. She showed it to me after. It was framed from the knee down. Looking at it made me feel really disabled. I felt ashamed of myself. I felt sorry for myself. it was kind of nauseating. I looked at myself as an object. I felt disgusted.I apologized to her for walking so poorly. She was surprised. Raising an eyebrow, she told me I had nothing to apologize for.
begin transcript
John Hoppin: Yes! You are tuned in to the What's The Matter With Me? Podcast. My name is John. I'm 40 years old, and I have multiple sclerosis. I made this podcast to share what I'm going through. In this episode, New Brace, Part Two, they rethought the whole thing. They fit me for a new type of ankle brace. It's new, and different, and I'm scared of change like anyone, but the energy is still high.
What's The Matter With Me? Podcast sponsored by Hoppin Hot Sauce, the best sauce in the world. What up? (singing). Right. Hoppin Hot Sauce, best in the world. Surf it on over to hoppinhotsauce.com. People love Hoppin Hot Sauce. Man, people love it.
Shoutouts
Yo, shout-outs to Joe. He said he loved all the different theme songs. Check it out. Send an email via the Contact page.. I will give you a shout-out. You don't even have to compliment me, but it helps.
Don't become another statistic
Last week in the show called Statistics, we took a systematic, numerical, statistical, analytic analysis of the podcasts. And did you know in February we had the most listeners ever? It goes back now a few years, so that's like people almost care about this. So check it out, the episode Statistics. It has all the numbers.
New Brace Part 2
Two weeks ago, I was talking about getting a new ankle brace, and it got emotional then. This week, I had a second brace fitting appointment because the orthotist came up with a new concept. She thought about what I needed. She thought, "Maybe you need a brace that can help you walk more." She thought up this carbon fiber brace that may help me walk easier.
Upsetting Video
While she was fitting me, she took a video of me walking in the examination room. She showed it to me after. I mean, she asked me, "Do you want to see it?" I looked at it. And she had kind of shot it framed from my knee down, looking at it to see how I walked. But watching it for me made me feel kind of really disabled. I know that wasn't her intention at all. It was me. It was self-talk here, but looking at it was tough.
It was only a few steps, and I was holding the railing in the exam room. My knee was hyperextended, and my ankle twisting, and my muscles looked atrophied. And instead of stepping forward, my foot would swing out to the side and I would kind of stumble forward slowly, awkwardly, and it was painful-looking. I felt ashamed of myself when I watched it. I felt sorry for myself. It was kind of gross because I was looking at myself as an object. I felt some disgust, and really a lot of judgment on myself.
I even turned to the orthotist-- we talked about her before. She's a disabled woman. I apologized to her for walking so poorly while we were watching it together. She was surprised. She raised an eyebrow and told me I had nothing to apologize for. And really, I was freaking out about this. I made a lot of notes for this episode at 3:00 AM the night after I have the appointment because I'm trying to sleep. I wrote, "I'm trying to sleep, and I keep thinking of the video." So you know, it caused some sleepless night or whatever. It upset me. I can't believe I apologized to her though. I mean, come on. Get real.
Trust in the process
I'm afraid though. I'm afraid the new brace won't work, even though she took extra time and thought about it. She thought more after our original fitting. She thought about it,
People are listening
People are listening to the What's The Matter With Me? Podcast.
I even found some podcast statistics to prove it.
More people listened than ever last month. They come from a lot of places around the world, and different places in the US.
We'll cover all of our podcast statistics in this episode of What's The Matter With Me? Podcast, "Podcast Statistics." Click below to read the transcript.
begin transcript
Yes! You are tuned in to the What's the Matter With Me? Podcast.
I'm John. Thanks for tuning in. This episode, we're going to talk about who listens to the What's The Matter With Me? Podcast, where they come from, metro areas, and all kinds of analytics and data. That's what runs the world, man. Wake up. Get with it.
Hoppin Hot Sauce
But first, I want to let you know What's The Matter With Me? Podcast sponsored by Hoppin Hot Sauce, the best sauce in the world. What up? (singing) Right, Hoppin Hot Sauce, best in the world. Surf it on over to hoppinhotsauce.com.
I went to the ranch by myself
I went to the ranch over the weekend with a couple of friends, but I went by myself. I left the wife, the family here, and it was kind of a dad's thing. I went out there. It was mostly notable because I went by myself. It was kind of a win. I drove myself. I did my little thing. It kind of worked. I had help from my friends.
But anyway, I want to give shout-outs to Joe. He said he's been listening to the podcast. So shout-out to Joe. Thank you for listening. You can send a email via the contact form. I'll give you a shout-out.
Recap. "New AFO Brace"
Recap. Last week I was talking about getting a new ankle brace, and it's kind of emotional. The old one has helped me walk for years. I've walked a lot leaning on this brace, and I'm going to get a new one. So I got kind of emotional, and I'm processing it. I'm still going through it. Check it out. Check it out. It's on the website. It's on the streamers and on the beamers.
Podcast Statistics Freak-Out
This week I want to talk about podcast statistics. I guess analytics, I mean. It sounds horrible. I hate the whole idea. I'm very freaked out about computing in general. But something cool came of it. More people listening to What's the Matter With Me? last month than ever before. And I thought, "Wow, this is cool." So I looked a little more at it just to be like, "What are these people?" I'm sure about half of it is fake, right? Because everything is fake on here. But, I'm real. Trust me, I'm real. I'm real.
Anyway, people always ask me like, "Do people listen to your podcasts?" And I always say like, "Not really." But some people do. I don't fake the shout-outs. Email me via the contact form. I'll give you a shout-out. Come on, I had to plug the shout-outs there.
There Are Thousands Of Listeners
You know, thousands of people have listened to this, more than 1,000, more than 2,000, and more than 3,000. And I'm not going to tell you any more than that, but thousands of people have listened to this. I've started putting transcripts up on the website, on the posts, and I think that's helping people find it so they know this is a podcast about multiple sclerosis, a podcast about MS, about trigeminal neuralgia, about being a father, entrepreneur, all that stuff, about being over 40. Can't forget KFJC. Got to give a shout-out. I'm a college radio DJ. I waste time for no pay, and I love it. I like records, so I hang out at the college radio station. I think that probably makes sense.
Faraway Places
So let's get back to these analytics and talk about countries. Obviously U.S. and big shout-outs to Canada, but some surprises down the list. We got Spain, UK, New Zealand, Taiwan, Sweden, Mexico, Australia. So we kind of are getting around the world in a crazy way, right?
Selling Myself Too Short
I mean, I'm just like, "I'm a sick person. Hear me talk". I guess it might be more than that. Come on,
In this episode, I went to get a new ankle-foot-orthotic (AFO) brace. basically, a rigid ankle brace. Things got emotional.
BEGIN TRANSCRIPT
Yeah! You are tuned in to the What's The Matter With Me? podcast, "New AFO Brace." What up! What's The Matter With Me?
In this episode, I went to get a new ankle-foot-orthotic AFO brace. Basically, it's a rigid ankle brace. Things got emotional.
But first, the What's The Matter With Me? podcast is sponsored by Hoppin Hot Sauce, the best sauce in the world.
(sings the Hoppin Hot Sauce jingle)
All right. Hoppin Hot Sauce. Best in the world. Surf it on over to hoppinhotsauce.com.
Recap
Last week we talked about the new format and recovering from microvascular decompression surgery, again.
I went to get a new AFO brace.
I went to the same disabled practitioner that was featured way back in Season 2, in an episode called It's Fall:
"He came to get the doctor right away. Something was different. It was my first time working with a disabled care provider. It was great. I thought that was great and I told her so. I said, 'Hey man, it's cool. What you're doing is cool to see someone disabled that's a care provider. I really like it.' She had a disability you could see right away."
Cool. It's cool to listen to the old episodes. Cool when they come back around.
Being treated by a disabled practitioner is a good thing
I came into the office, it was cool to see her again and she told me she even listened to the podcast. She asked me about it and whatever. So shout out! And that was so cool. I enjoy being treated by a disabled practitioner. I think it's a good thing. That was great. But what happened next was more complicated.
We did the exam and she wanted to fit me for a new AFO brace.
My old brace was cracked. I knew I needed a new one, but she wanted to fit me for a new style. I know I have problems with the style I have. It's making a big callus on the arch of my foot where my ankle bangs into it. It's uncomfortable. I've had the same style for many years. I've had three or four of the same model.
So she said, "Hey, the shape of your foot has changed. Your heel doesn't contact the ground. That makes you unstable."
I was like, "Yeah."
So she was like, "I think you might need a new one."
Fitting a new AFO brace
So to fit you for a brace, what they do, more or less, is put your ankle in a cast. I mean, there's different ways, but this way is, they put your ankle in a cast, cut you out of the cast and then use it to make the brace.
Emotional attachment to my old AFO
She left the exam room to get all the stuff, like the plaster stuff, and whatever. To be honest with you, I feel an emotional attachment to my brace because it helped me walk for the past several years, like five years, seven years, a long time. I've walked a lot in that time and I couldn't have done any of it without my brace. I'm attached to it. I think it makes sense.
My previous experience was difficult
Before I got the brace I'm in now, I was fit for a different brace the same way, at the same place. And it didn't work. They misread the prescription. It wasn't what the doctor had asked for and it didn't fit in my shoe. And worse, I wasn't ready to accept it. I wasn't ready to accept myself with this thing. I limped home with the brace in one hand and the walking stick in the other, and it felt like no one can help me.
It was a super lonely feeling. I felt very alone. I felt like there just was no way to make it better and it made me very sad. I have never really told anyone about it.
Naming the feeling
So back to the doctor's office, she was off getting stuff to fit me for a brace and meanwhile I'm thinking of that sad story I just told you about last time. I have brain damage in my brain stem and it causes me difficulty regulating my emotions. I get angry, I cry and I'm sad, really easy and it's a lot of work for everyone.
Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.
I had microvascular decompression surgery to alleviate trigeminal neuralgia, and now I'm in recovery again.
BEGIN TRANSCRIPT
Thank you for tuning in to the What's The Matter With Me? Podcast "I'm recovering again".
It's pretty windy. I am recovering from surgery again. I'm here at the back of my house. You can hear the chimes and the wind going through the Yuzu tree in my backyard. I'm recovering from microvascular decompression surgery again. They went in through the back of my skull and adjusted the trigeminal nerve. I'm not really sure what they did because I haven't had my followup. I'll have that in the beginning of March, which is still three weeks away or more, and but the bottom line is once again, I'm free from pain. I'm very traumatized from last time because I was free from pain last time and then pain came back… I had a relapse. I had a recurrence that hurt me. so I'm scared. I'm traumatized about it.
Although the procedure I underwent is not a temporary procedure, it does have a risk of failure or risk of relapse.
So what I'm hoping is that a lot going to relapse. That's kind of my focus and I don't know if that's getting to be true. I'm not really sure what kind of conceptual framework to put around it. I probably should talk to my therapist about this directly, my talk therapist, and maybe the surgeon and his nurse may have some suggestions. So the bottom line is I can talk, I can eat, I can brush my teeth, I can take a shower, I can have wind on my face. Everything good. Everything is operating 100%.
If I touch my cheek by my cheekbone, it's a little bit different on the right cheek to the left cheek, but the difference is so minute it's difficult to put into words. I don't really want to talk about it anyway. I just want to never think about it again. I'm sure you can understand. I will talk about it though. I'm sure you can probably guess that though, because I talk about everything. All right. Anyway, I'm recovering. I'm still taking Tylenol, but I think that I will stop doing that sooner rather than later and I'm taking less Tylenol from that they prescribed me at the beginning. I probably should stop taking it. Anyhow, Tylenol.
I'm going to get my stitches out on Thursday.
Today's Tuesday, so in a couple days. I'll get them out. That would be good. I'll hit up Big Elvis and I'd go to the barbershop, shout to the barber, Big Elvis. Yeah, I'm recovering from surgery again. They removed, I guess I have a titanium mesh holding the bone in in the back of my skull or something and that seems about right. There's nothing mushy back there. But I'm not in a rush to palpate the area because it's recovering. I really hope I don't get visited by horrible anxiety. I want to avoid that. Maybe I'll get into March Madness so I'll make a bracket. I'll just copy president Obama's bracket because he knows more than I do. I'll change something. I'll put San Jose State in there.
I'm recovering. I have cut my intake of pain medications by about a quarter. I cut one by a quarter, and the other one that's very narcotic by one-third. So I'm getting there. They didn't instruct me to cut that narcotic one, but I had to because it was giving me double vision and it was too much. So I had to come down off the drug dosage. So I'm down from surgery, not all the way. We'll see what happens with that. My doctor told me they'd do that. We'll talk about that again in a couple days. But she'll tell me what's up and it'll be moving forward.
A good thing is I can talk to you
A good thing is I can talk to you, I can talk to my family. I can talk to whoever I want to. It's great. So that's great. Thankful for that. Now I'm going to go. Thank you for listening to What's The Matter With me? Podcast. Straight up and down, it's Hoppin Hot Sauce every time.
(singing)
Yeah.
I'm changing the format.
Plus, listen to the new theme song for season 4!
begin transcript
All right. Thanks for tuning into the What's the Matter With Me? Podcast, "Format Change."
This is the first episode. I guess you'd call it an episode. I have in the past. The first episode of the fourth season.
For the last few years, I've been restarting the season at the beginning of the year, so I guess this is the fourth year of What's the Matter With Me? Podcast. I'm restarting a season, season four, but I have got some kind of news, I guess. I'm going to change the format of What's the Matter With Me? Podcast. I don't really know what it's going to eventually become or how it's going to work. I'm just starting, right now, an experimental phase.
I started What's the Matter With Me? Podcast because I felt like I needed support having MS. I wanted to share that. I also wanted to grow my disability consciousness. But now it's season four. I want to connect more directly with my listeners. I want you guys to all email me and say what's up.
I'm changing the format.
I'm not going to have big episodes like I had before where I stitch a bunch of segments together. Instead, I'm just going to make a segment about something, and this segment is about that I'm changing the format and that I'm entering into an experimental phase of What's the Matter With Me? Podcast that I hope it's going to be exciting and fun to listen to and take part in. I think it's going to make it easier for me to post episodes.
I'm changing the format. I'll be back soon with a new episode. I got a lot of new stuff to tell you. I had surgery again. I'm recovering again. So I'll be back about that. A lot of things that have happened. I even made new music for this season. Maybe I'll put it in here at the end.
Hoppin Hot Sauce
And as always though, before we get into that, this is the What's the Matter With Me? Podcast sponsored by Hoppin Hot Sauce. If you want to eat the best hot sauce in the world, try Hoppin Hot Sauce because that is the best hot sauce in the world. (singing)
All right. Check it out, hoppinhotsauce.com. And without further ado, here is the season four theme song. Thank you for tuning in to the What's the Matter With Me? Podcast.
I went to Costco on the Saturday before Thanksgiving. On accident, of course I didn't think about it.
I went to the Cantor Arts Center at Stanford University.
I had to position myself to avoid the glare. The Rodin, they had "The Thinker". So, I went into the gallery and saw that and I had to kind of position myself all around it. And because you have to spend so much, because I had to spend so much time positioning myself, I couldn't do this kind of casual looking. It really changed the way I looked at stuff. I had to look kind of more actively. It was interesting. Anyway, it was just a really cool experience having been to so many art shows in my life. It was totally new way of doing it, but I enjoyed it. I did it. I'm going to do it again, I think that's cool and so cool stuff with the wheelchair, positive things.
I appeared on another MS Podcast, the YEG MS Podcast. Read on..
Begin Transcript
Welcome to the "What's the Matter With Me?" Podcast.
My name is John, I'm 39 years old: husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis, so I made this podcast to share what I'm going through.
"What's the Matter With Me?" is an MS podcast, and it's also about other things. I'm not a medical professional and you should not take this for medical advice. If you need medical advice, ask your health care provider.
I record this podcast to let people know that when difficult things happen you don't have to quit or give up, you can just keep going.
YEG MS Podcast
I went on my wheelchair to two different places, one was crazy and the other was kind of beautiful. But first, I did an interview on a multiple sclerosis podcast from Canada called YEG MS Podcast, which is created by this guy Sean Wingrave. And he's kind of like me, he's husband and father, about my age and he's out of Edmonton, Canada, in the state of Alberta.
Sean has MS and he organizes running events called "The Really Long Run to End MS", which is kind of an interesting thing. I can't run, but I'm interested! I reached out to him to try and make a connection with another MS patient. He's a podcaster, he's a father, he's my age, have a lot in common, I thought, maybe. I wanted to see if I could talk with another podcast to see what we sound like. It sounds loud out here right now. But just like I said, I'm just going to keep rolling.
SI have a lot in common with him. I wanted to see how my message sounded when I crossed it with another person's podcast, or with their own message. We had a pretty long conversation. I think it was about an hour. Actually, we had two conversations because the first one there was some audio lost and so we made it up on the second one. it was good, I had, it was almost an hour conversation with the guy. We covered a lot of stuff. I'm going to play an excerpt, I'm going to try and download some of it. I'll definitely put a link to it on my website. Here's the excerpt:
Sean Wingrave: Welcome to the YEG podcast, episode number 52 Today I have the pleasure of chatting with John Hoppan and John is a podcaster. He's a radio DJ, he's an entrepreneur, he's a father, he's a husband, he's an MS warrior. He's an all-around great guy and his podcast has had a profound impact on me. At the start of these things, I always like to give the listeners more of a sense of who we're talking to and kind of how your MS journey started, but you're involved in so many different things. So, where do you think we should start?
John Hoppin: Oh gosh, that's hard. I mean, you have to edit things out right? (tape edit sounds) ..Like I often say at the beginning of my podcast, I say, "What's The Matter With Me?" is a MS podcast. But, it's also about other things because I live a full life. I have a family, I have a wife, I have two children. I run my own business and I'm on the radio and I make the podcast. I put a lot of energy out there in the world bec...
I have a wheelchair and I busted it out over the weekend. It was kind of a big deal. I've never ridden around in a wheelchair before. We've talked about it before on the podcast that I've got the wheelchair, but also that I'm kind of apprehensive about riding around in a wheelchair. But I did it. I was with my family. I had gone to see my cousin Amy in the hospital where she's recovering. We talked about that last episode. And then my wife who had been in nanny in San Francisco was like, "There's a playground right around here in Golden Gate Park and kids love it. Let's go there." And I thought, "maybe I'll ride my wheelchair around."
Begin Transcript:
Thank you for tuning into the What's the Matter With Me podcast.
My name is John. I'm 40 years old, husband, father of two, small business owner, radio DJ and podcaster. I have multiple sclerosis so I made this podcast to share what I'm going through. What's the Matter With Me is an MS podcast and it's also about other things. I'm not a medical professional. Don't take this for medical advice. And. If you need medical advice, ask your healthcare provider.
Recap
Last episode, I was processing grief and trauma. Hear the plane going overhead. I'm outside again, 6:45 in the morning right now so all the airplanes are landing here in San Jose, I guess. And all the cars are going. We'll probably hear some cars start up, people going to work. I've been having a hard time. Last episode it was grief and trauma, going through a lot of causes of grief and different traumas in my life. And now in this episode, it's about 10 days later and I'm thinking more about levels of reactions.
Unpacking the real reasons
I'm having a lot of trouble separating, still, separating the implicit impulses, thoughts, anxious thoughts, from what is real trauma and grief. We went over that last episode, but now what I'm starting to figure out is that a lot of this trauma I'm experiencing because of an implicit reaction. I'm upset because my cousin was in an accident or my friend is ill, but it's really that I think those upsetnesses don't have to do with them, they have to do with what I'm going through with MS. So I'm starting to just try and unpack, "what am I really upset about?" What are the real reasons that I'm having these negative thoughts and feelings?
And I thought, "maybe I'll ride my wheelchair around."
I'm out here in the garden right now. This is a power spot for me amongst the plants and birds. I've really loved them and I love it here. I love to be in nature. I have a wheelchair and I busted it out over the weekend. It was kind of a big deal. I've never ridden around in a wheelchair before. We've talked about it before on the podcast that I've got the wheelchair, but also that I'm kind of apprehensive about riding around in a wheelchair, but I did it. I was with my family. I had gone to see my cousin Amy in the hospital where she's recovering. We talked about that last episode. And then my wife who had been in nanny in San Francisco was like, "There's a playground right around here in Golden Gate Park and kids love it. Let's go there." And I thought, "maybe I'll ride my wheelchair around."
We went riding
With my son
So we went for it. I was able to get the wheelchair out of the car and then we were off. There were slides, a bunch of slides, a whole thing of swings, climbing structures and play structures like a giant green wave the kids could climb on. It was cool. It was called koret playground at Golden Gate Park. It was fall in San Francisco and even though I had a scarf and a hat and a jacket, my hand still got cold because when you're in a wheelchair you're just kind of sitting there so you have to bundle up. I learned that one on my first ride. I think that'll come in handy later to bundle up.
Rotary Park
Riding with my family
Then the next day we went to the rotary park bike path where my kids loved to ride their bikes here in San Jos...
Overlapping grief and trauma and my new post-trigeminal neuralgia existence are causing anxiety and fear.
I record this podcast to let people know when bad things happen you don't have to quit. You can keep going. I’ve learned things along the way. I started out thinking that I was sick but now I know that I am in recovery.
Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.
Notes
So they were like, "Something is weird. We got to put the EKG on him." But I'm like a hairy individual, you know? So they got out the trimmers, they're like, "What?" They're just like, "What do we do?" ... she says to me, she's like, "Don't worry. After we're done, I'll shave the rest." I'm like, "Hell no you won't shave the rest of my chest. Are you kidding?" I think of my chest hair a little bit like Samson, you know what I mean? Stay away from that. Come on, give me a break.
Begin Transcript
Welcome to the What's The Matter With Me? Podcast Season 3, Episode 15. I'm recovering from microvascular decompression (MVD) surgery.
Thank you for listening to the What's The Matter With Me? Podcast. My name is John, I'm 40 years old, husband, father of two. Small business owner, radio DJ, podcaster, and I have Multiple Sclerosis. I made this podcast to share what I'm going through. I'm not a medical professional. Don't take this for medical advice. And if you need medical advice, ask your health care provider.
Recap, last episode, I went to Amy's wedding
I got interrogated by cousin Tommy, the cop. And I had major Uhthoff's effect. And people were, all kinds of people telling me like they were like, "Put this on your neck. Put this ice water on your wrist." If you ever have a medical emergency, and you're surrounded by your whole family, that's what it was like.
What's The Matter With Me? Podcast Season three, episode 15. I'm recovering from MVD surgery, microvascular decompression surgery.
I had it about 10 days ago. And it was in the morning, I was the first surgery for the day in the morning. And so I got there really early. I got checked in in the waiting room, and then I went into the OR. I remember being in there for like a second, but then the anesthesiologist knocked me out.
I woke up with 25 staples behind my right ear. But I wasn't having trigeminal neuralgia pain in my face, in my jaw. It was a little bit numb, like I'd been to the dentist earlier that day, and I was getting ready to go to bed. You know how you can feel it? It's not quite tingling, it's not quite like fat lip the way you have, but it just felt weird.
And it's continued to feel a little bit weird. The side of my tongue tingles a little bit.
And so those staples, they hurt. The back behind my ear kind of hurt. But I wasn't in trigeminal neuralgia pain. And the thing is that pain is so intense that I was like, "I feel all right. I just had a craniotomy. But I feel okay. Because I'm not in pain like I'm going to die."
Trigeminal neuralgia pain was the worst. And I can talk about it in the past tense, because the operation was a success.
So I got to give a shout out. Tremendous, great support from my family, and all my friends. And I'm here today. I'm down… Today I'm down to 12 from 15 pain pills I was taking before surgery. I'm taking three less pills. I feel more alive, brighter, I'm surer on my feet, everything. I'm a little low energy. I'm still getting my stamina back. Because for most of the last 10 days I've been laying in bed unable really to do anything, kind of woozy when I got up. Because I was on all kinds of medication, and I was on more pain pills because of the surgery.
But now I'm down to 12 pills and I'm on no surgery pain medication. I'm just trying to get off all that pain medication I was on before the surgery. And I can't… I would just kick it all to the curb, except I have to manage… I can't go into a withdrawal again. I have to take it down slowly. That's what they call titration. I have to take one… Right now I'm taking one less pill every three days.
So my wife told me sometime around the beginning of November I'll be off everything, something like that. I'm excited. And you know me. I kiss my wife on the lips, man. Kiss her right on the smacker.
Get The Whole Story: Please check the Microvascular Decompression tag page to hear all the updates about my MVD surgery.
What's The Matter With Me? Podcast Season 3, Episode 14 Excerpt: "Flapping My Arms"
One thing I did notice about the last episode is that I'm flapping my arms again. I first figured out of it about flapping my arms in episode five:
"and this is kind of joking, I guess. I get nervous, you know. You know, if you ever see me like making fart noise or flapping my arms, you know, somebody very close to me has died."
What it means, basically that. When I'm flapping my arms again, you know I'm scared. I make jokes, it's because I'm scared.
Season 3, Episode 14: The Pre-Op + Amy's Wedding
JOHN HOPPIN: What's up? It's What's The Matter With Me? Season three, episode 14. The Pre-Op + Amy's Wedding
Welcome back
All right, welcome. Thank you for listening to The What's The Matter With Me? Podcast. It's another one of these shoot it from the hip episodes. I'm not a medical professional. Don't take this for medical advice and if you need medical advice, ask your healthcare provider.
Recap.
Last episode, The episode is called, "I'm Having Microvascular Decompression Surgery" and that's a rather descriptive title. Check it out on WhatsTheMatterWithMe.org. Look on Apple Podcasts. However you get it, that's how you get the What's The Matter With Me? Podcast.
Flapping my arms
One thing I noticed.. About last episode … One thing I did notice about the last episode is that I'm flapping my arms again. I first figured out of it about flapping my arms, figured out about that in episode five:
"and this is kind of joking, I guess. I get nervous, you know. You know, if you ever see me like making fart noise or flapping my arms, you know, somebody very close to me has died."
What it means, basically that. When I'm flapping my arms again, you know I'm scared. I make jokes, it's because I'm scared.
Noninvasive invasive
Microvascular decompression surgery, MVD, it's technically a noninvasive surgery, I guess, but it's the most invasive sounding noninvasive surgery I've ever heard of. They're going to open up my skull. And surgery is coming up in two days. I went to Palo Alto last week, week, met with the anesthesiologist who informed me I was going to be first on the schedule, which is a good thing, but it means I have to get there early. And you know, it's Palo Alto, I'm in East San Jose, I've got to give a little time. So early is early.
pain update
Let me give you a pain update. I've been having pain. This is like, I kind of kept a little diary of dates: "I've been having pain, trouble eating cereal, September 5th. Now I'm in remission, eight days after writing that, September 13th. I'm having a low level of pain today. Kind of annoying, but because I'm so traumatized it's also more than that, it has a fear component." That's today, September 17th. I'm not feeling that bad. I was feeling pain, I came out of it and now I'm back in a little bit. That's how it goes, it's like a wavelength. I'm kind of scared, but at least I'm not in major pain right now. That's the way … I mean, what else can I say … Wish I could say something better.
I went to a wedding.
It was like a family reunion, a rare thing in the family. Everyone was there, it had been like decades, you know? And so everyone was there and the energy among us all, it was tremendous, and I thought that was a good thing for me. So I was glad to be there.
Nobody came
It was 96 degrees in the shade last weekend, and the seats were mostly all in the blazing sun. Everyone who had a seat in the sun stayed standing in the shade close to the house waiting for the wedding music to begin so they would take their seats.
Uhthoff's effect
I experienced Uhthoff's Effect, which I went over first in episode seven.
"My thoughts bubble up through my mind, like my mind is full of mud and like a primordial ooze,
Trigeminal neuralgia hurts like hell. I'm going to have micro vascular decompression surgery, get out of pain, get off these pain medications, and contribute to my family again.
I signed up to have surgery. They’re going to pop a hole in my skull and operate on my trigeminal nerve. It’s called micro vascular decompression surgery.
BEGIN TRANSCRIPT
John Hoppin: What's The Matter With Me? Podcast, thank you for tuning in. Season three, episode 12, maybe? Maybe 13. I always get the episode wrong in the freestyle edition, but it doesn't matter. (ed: This is Season Three, Episode Thirteen) Welcome to the What's The Matter With Me? Podcast. Season three, episode 12, maybe? 13. (ed: Again, this is episode thirteen) It's another one of these shoot it from the hip episodes.
John Hoppin: I'm not a medical professional. Don't take this for medical advice. If you need medical advice, ask your healthcare provider.
John Hoppin: I can't really talk right now because it hurts. But I wanted to talk to you. Oh, I'm kind of conflicted. Here, I'm going to press this toy. It's a picture of a snail. My kid got it from her grandma who's here visiting us from Japan.
Japanese Toy: (singing).
John Hoppin: Yeah. Okay. A little break. It really hurts to talk for trigeminal neuralgia. I wanted to give you an update, though. What's The Matter With Me? is still cracking. I'm going to take a break every time it hurts too much, okay?
Japanese Toy: (singing).
John Hoppin: Oh. (singing). I like that one. It's about an elephant. Zō-san, that's like Mr. Elephant, zō-san. Yeah.
Japanese Toy: (singing).
John Hoppin: (singing). I don't know all that.
John Hoppin: (singing). Yeah. Okay. So, enough with that zō-san, Mr. Elephant. It hurts, man. So, I wanted to check in, RECAP last episode. Episode 12, did you check it out? It's kind of like a free association, poetry, spoken word kind of thing. It's kind of nebulous. But I've been having a lot of pain, you guys, since Mother's Day. I've been in extreme pain. Right now, weirdly it hurts to touch the inside of my right ear, like to pick my ear, so I can't dry off my ear after the shower, but I also can't even wear headphones to record in the studio. So, I'm out here recording to kind of freestyle with no script, just this sound maker. Here's some birds.
Japanese Toy: (singing).
John Hoppin: You guys, I signed up to have surgery. It's like as close to my brain as you can get. They're going to pop a hole in my skull and operate on my trigeminal nerve. It's a thing called micro vascular decompression surgery. So, basically, there's a blood vessel that's somehow right up next to my trigeminal nerve and it's making all this pain, so they're going to go in there. I signed up next month, because I can't even talk to you guys it hurt so bad. I can't talk to my kids in the morning and say, "Hey, you know, put on sun block," because it hurts to say "puh" and it hurts to say "buh". So, right now it really hurts to talk to you. Let me have a break. Let's see, snowman, duck, whatever.
Japanese Toy: (singing).
John Hoppin: Hey!
Japanese Toy: (singing).
John Hoppin: Yeah.
Japanese Toy: (singing).
John Hoppin: Uh, uh, uh. All right, so not bad. What's The Matter With Me? Podcast. Thank you for listening. I know I haven't been on for a while, but I'm telling you this facial pain is so much that I'm going to have someone chop through my bone and operate on my nerve. But he's a very talented neurosurgeon. He's done over a hundred of these kind of procedures. So, right now, the reality of my life is I'm on two medications. On each of those medications, I'm on the maximum, so I'm like on a double dose. I have to nap at 10:30 in the morning. I get tired. I get tired after lunch and after dinner I go to sleep at 8:00 PM.
wtmwm s3 e12
i awoke up this morning to a familiar nausea. i'd forgotten to take my pills the night before.still can't get it straight. got me thinkin'....this podcast - like me - is disabled. not only a podcast about disability or adversity, CHALLENGES or perserverance, this podcast itself is disabledmaybe i shouldn't call it a podcast. but, it's too late
something not quite right. am i doing it wrong?cycles - recently, i've become waylaid in a cycle that whipsaws between extreme pain and prescription withdrawal.No way out and no room for podcastingwhat does success look like? we've established in previous episodes that it won't ever stop and won't ever quitthis is the hand of cards thats been dealt and there's nothing to be ashamed of. got to be honest about that and put it out there right off the top.nothing to turn away from. in fact, something beautiful is here.what is this podcast for? it isn't to be like the rest, to follow best practices. It can’t be.this is a testament, like any artists body of work, using whatsthematterwithme.org for my studio
what's this all about? nothing. just wanted to give thanks and send greetings to everyone for tuning in.THANK YOU FOR LISTENING TO THE WHATS THE MATTER WITH ME? PODCAST .
Begin Transcript
JOHN HOPPIN:
Welcome to the What's The Matter With Me? Podcast Season Three, Episode 12. "A Familiar Nausea." I'm feeling prescription withdrawal. Maybe I shouldn't call it a podcast.
I woke up this morning to a familiar nausea. Welcome to the What's The Matter With Me? Podcast. My name is John. I'm 40 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I'm going through. Past episodes can be downloaded on Apple Podcasts or from WhatsTheMatterWithMe.org or wherever you get it. I'm not a medical professional. Don't take this for medical advice and if you need medical advice, ask your healthcare provider.
Welcome to the What's The Matter With Me? Podcast, Season Three, Episode 12. You're going to love it. I woke up this morning to a familiar nausea. I forgot to take my pills the night before, and I had a tight headband of dull pain around my head and nausea and cold sweats.
I still can't get it straight. It got me thinking. Like me, this podcast is a disabled podcast, not a podcast about disability, although it is about disability. This podcast, like me, this is a disabled podcast.
Not only a podcast about disability or adversity, or challenges, perseverance, this podcast itself is disabled.
Maybe I shouldn't call it a podcast, but it's too late. I don't really follow best practices. I shoot it from the hip always. I'm making this up. Maybe I shouldn't call it a podcast, but it's too late.
Something's not quite right, but I don't know what. Am I doing it wrong?
Cycles. Recently I've been waylaid in a cycle, whipsawing between extreme pain and prescription withdrawal. There's no way out of it, and here's no room, no room for podcasting or really anything. I haven't cooked dinner for my family in weeks.
For this podcast, what does success look like? We've already established, in previous episodes, it won't ever stop and it won't ever quit.
These are the cards that have been dealt and there's nothing to be ashamed of there, got to be honest about that, put it out there right off the top. There's nothing to turn away from. In fact, something beautiful is here.
It's a testament, like any artist's body of work, using WhatsTheMatterWithMe.org as my studio.
What is this podcast for? It can't be like the rest. It just can't be. What's the whole thing about? Nothing. I just want to give thanks, send greetings to everyone tuning in. Thank you for listening to the What's The matter With Me? Podcast.
Thank you for listening to the What's The Matter With Me? Podcast. Past episodes can be download at Apple Podcasts, WhatsTheMatterWithMe.org,
Pain / Withdrawal Cycle
Swallowing Evaluation AKA Diagnostic Fluoroscopy
Had pain and went to the Nurse Practitioner ..
Medication (mis-)management traps me in the the pain & withdrawal cycle. Read more for my visit to the nurse practicioner, diagnostic fluoroscopy, postlude with John John & more.
BEGIN TRANSCRIPT
JOHN HOPPIN: Welcome to the What's the Matter with Me Podcast, season three, episode 11, the pain withdrawals cycle. I'm always in some kind of recovery. I saw the nurse practitioner, now I'm medicated. I had a swallow exam, that's a diagnostic fluoroscopy. It was weird. Stay tuned.
Welcome to the, What's the Matter with Me Podcast. My name is John. I'm 40 years old. Husband, father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis. I made this podcast to share what I'm going through.
Past the episodes can be downloaded on Apple podcasts or from whatsthematterwithme.org, or wherever you get it. I'm not a medical professional. Don't take this for medical advice and if you need medical advice, ask your healthcare provider.
It's true. I think the diagnostic fluoroscopy, that has to be one of the weirdest exams, that they make you swallow all kinds of weird stuff. Stay tuned.
First, let's recap.
Recap of S3 E10
Last episode, I talked about project euphonia and that's Google's project to help speech recognition for people with impaired speech. I had pain and drug withdrawal. What else? Like every episode. Last episode, shout outs to Rocky. Check out the last to episode, disability technology. It's on whatsthematterwithme.org, and Apple podcasts. Stream up, beam up, turn up and learn up.
I had pain again
I thought I was in recovery last episode. It started hurting. I went to the nurse practitioner. I was trying to tell her what happened, what was going on, but it hurt to talk. That's why I haven't been on What's the Matter with Me? Or talking at all really. And so it hurts to talk.
So trying to tell her what was going on. I started crying and it made me emotional because it hurt like hell. She ended up, she gave me some more pills. They thought I wasn't yet in the pharmaceutical range where the medication was affected. Somehow my bloodstream, we did some blood work and I still wasn't up to the level where it's providing pain relief, obviously.
So I had pain and went to the nurse. I cried, she gave me more pills. Now I'm in recovery. And it's this crazy cycle I'm still in. I have pain and then I get recovery because they increase medication. Then I start taking down the other medication, medication B and I go into withdrawal. They gave me some more of that and recovery. Then I start having pain again because medication A, I'm still not in that pharmaceutical range where it helps me. And so I go into recovery.
End result, right now I'm drugged.
I'm drugged ...
How long will the pain relief last? When am I going to go back into this cycle? I'm in recovery. It's too much. It's very heavy medication. So I've told my nurse, and we're even looking into robosurgery. It doesn't even always work for people, but at this point I've got to leave this cycle behind.
All right, so I don't want to be in that cycle. That's pretty easy to understand.
Diagnostic Fluoroscopy
Diagnostic fluoroscopy
"Eating fluorescent stuff"
Another thing that my doctor ordered, kind of back a couple of months ago, but the exam rolled its way around, and a couple of days ago, yesterday I had a swallow exam called the diagnostic fluoroscopy. So what does that mean? I'm eating fluorescent stuff that they can see on their tests and they're checking out my swallow area.
So first thing they did, set me down in the chair and it's just this X-ray, so that it's going through, I'm sitting next to a kind of x-ray sheet, and they're shining through my neck, like through my trachea. And they're having me eat stuff, so swallow things.
Google's Project Euphonia helps disabled people communicate
Five weeks of mayhem, pain and drug withdrawal
ALSO, Five Weeks of Mayhem, Pain &Drug Withdrawal
(Picking up the pieces)
TRANSCRIPT
JOHN HOPPIN: Welcome to the What's The Matter With Me? Podcast Season Three, Episode 10: Disability Technology.
Coming up, Google's Project Euphonia helps disabled people communicate. I have five weeks of mayhem, hell, pain, and drug withdrawal. I'm not kidding. It blew up my life. Stay tuned.
Welcome to the What's The Matter With Me? Podcast. My name is John. I'm 40 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I'm going through. Past episodes can be downloaded on Apple Podcasts, or from whatsthematterwithme.org, or wherever you get it. I'm not a medical professional. Don't take this for medical advice, and if you need medical advice, ask your healthcare provider.
Crazy five weeks of mayhem. Let's get into it. Pain and drug withdrawal. Ouch. But first, let's recap.
Last episode, Happy Birthday Koko, the whole episode while I was saying it was being filmed by some people trying to make a movie about it, they're gone and it's over. They aren't here anymore. It was a complaining episode. I complained about being in pain, but also discussed being in nature, communing with nature as a pain control method. It's patented. That's my patented method. I talk about the Salt Fat Acid Heat show. I get the name wrong a lot, but I gave that lady an idea. She should do one about butter. I would watch … I watched the other one really. I guess she could do one about whatever she wants. It was the day before Koko's birthday. Check it out. Happy Birthday Koko on Apple Podcasts and whatsthematterwithme.org.
All right. Let's get into it. Google's Project Euphonia, disabled tech, disabled technology. It's going to help disable people speak and interact with voice interactive devices.
Project Euphonia
You know, there's a problem. Disabled people are different. They talk different. So the machines in the house, the Alexa or I don't know what they all are. I have this thing. I just go in a room and yell, "Okay Google," and it talks. Google Home, I guess, or Google Assistant. Whatever. Anything, Siri, all that stuff, it doesn't understand you because you talk different when you're disabled. So you need some solution here, and Google's Project Euphonia is a way that they're trying to bring some sort of solution.
I kind of like cribbed here from an article on theverge.com. Let me give credit where credit is due to James Vincent. May 7th, 2019, Google's Project Euphonia Helps Make Speech Technology More Accessible to People With Disabilities: Improving Speech Recognition Software for People with Voice Impairments. It's basically saying the biggest focus of Euphonia will be collecting more voice data from people with impaired speech. This is intended to remedy the problem of AI bias created by limited training data.
That just means there's not enough recording of disabled people trying to talk, and so they need what they're calling training data, limited training data. That means they don't have any recordings. So they're trying to get people to volunteer, but this brings up an idea of bias in artificial intelligence. This is an example of bias in AI. There's limited training data of people talking who are disabled. So this is a cool project, Project Euphonia. Then furthermore, I'll go down … In addition, the company is working on new interactive AI systems that recognize actions like gestures and facial expressions. So you can just kind of move. People who can't talk or disabled people who are different, maybe they don't want to start talking in a crowded place and have all these people be like, "Oh, look at that." You know? This can help.
So it's called Live Relay and it's supposed to understand gestures,
Man!-- I have trigeminal neuralgia, my face hurts. Ow! The kids had to go away, it hurt so bad I couldn't handle it and I freaked out. I've been staring at plants in the garden. I grilled chicken for the whole family, had dinner and couldn't eat it, because my face hurt. Tomorrow is Koko's third birthday.
In this episode, I participate in Walk MS as a walker and also as the MC. Later, I post to Reddit and it goes pretty well, even though I use the wrong word.
Coming up in this episode: pain and anxiety, brain damage, the beauty of nature. Hanging out in the backyard, it's my 40th birthday. I'm thankful to be here processing my emotions and symptoms. Come hang out with me.
In which: I deal with social isolation, get interrupted by a real estate broker, I'm uninspiring, and I come out against disability porn. I realize I need a scooter again, and the national MS society support will help.
I'm afraid to get a scooter because I fear my own disability, I get ready to emcee for Walk MS, and try to understand my place in society vis a vis Race, Gender, Class, and Ability.
Welcome to the What's the Matter With Me? Podcast, Season 3, Episode 4, Mobility Assistance, in which we go on a trip to Sacramento where I finally admit to myself that I need a scooter, plus fictional characters with MS. I made some new tunes and more. Stay tuned. Check it out.
I was due for my Rituxan infusion, my primary multiple sclerosis (MS) medication. I called a week ahead. I needed to get bloodwork at a lab and approval from the insurance company. The bloodwork was no problem, but the approvals were difficult. I had to be persistent. Before I knew it, I was a month and a half late.
Over the weekend, I attended the MS Breakthroughs event put on by the National MS Society. The keynote speaker was Jeffrey Dunn, director of the Stanford MS Center. The event promised to inform about the current-day MS Breakthroughs as well as the future of MS Research.
Something Happened at Bill's Cafe I order coffee and toast, John John gets pancakes. Tap on my shoulder, our host: “Excuse me sir, is that.. your underwear?”
My brace helps me to walk, but it doesn't mean I can go out walking. I learned it the hard way yesterday when I went out in Petaluma.
Live broadcast from a bench outside the Petaluma SMART Station.
In this episode, I head to the r/MultipleSclerosis subreddit for support, and get mixed results. Is my message insulting or inspiring? It depends on who you ask.
I've been off the air for a few weeks, I took Hoppin Hot Sauce to a Harvest Fair. I've started a Hoppin Hot Sauce Youtube channel,
My hand is really useless. It's it's in a claw most of the time sometimes my thumb goes under my index finger. At night when I'm sleeping and I wake up at 4 in the morning is the best time but I'm at Cross purposes there because it's also the best time for being asleep.
It was too hard and nobody wanted it anyway, I thought. I went on for some days like this and I think it may have happened the week before as well. I really felt like quitting and giving up everything. And what was so annoying was I couldn't even have a thought about that, to evaluate it. There were no brain waves.
I applied for a grant related to this podcast, to help me increase my internet savvy and learn Techniques to spread this message in a louder voice with greater reach. I don't know about all that but I can tell you it was great to put together an application. I wrote some essays that clarified why I am doing this.
We went to Monterey on vacation. It was frustrating because I felt very limited by disability. I have such a hard time on vacation because I can't do what I used to. I need to figure out a new way.
WTMWM? – S2, E9: Swimming
Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 9: Swimming My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider. Find us on Facebook and for goodness sake please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org
Episode 8 Recap Last episode featured a movie review of a short film by Jason dasilva, I wanted to try and go swimming, made a movie for Hoppin hot sauce, and my tomato plants were fruiting. Shoutouts Shoutouts to Eric who told me he’d been listening to my pod. Eric lives in Sacramento so he was digging the Sacramento episode. Write me by clicking the contact link at the top of the page and I’ll give you a shout-out, I’m easy. Fall Down Seven Times, Stand Up Eight Fall down seven times and stand up eight, this is a Japanese proverb. in short it means something similar to "it's not whether you win or lose, but how you play the game." It's different, I thought it was a poetic image and I felt like it could be good to think about. Because I am always falling down and having to stand up and face challenges.
Then I Googled it and I found a bunch of people who have it as a tattoo, and a rock song about it. I had a good idea about it in my mind and then Google image search was just ruining it for me. Sometimes you shouldn't search for things on the internet. Certainly sometimes it's plenty to ponder something on your own, and keep the internet out of it. In my mental courtroom, it has all been stricken from the record. Swimming On John John's 5th birthday I went swimming in the pool at my parents house. In the last episode I said I was worried that I wouldn't be able to get in and out of the pool but I hoped that I would try to get in. My family was there including my Uncle Frank along with my stepfather Dave.
When it was time to get into the pool I got a chair, one of those foldable camping chairs, and set down in it close to the pool. My idea was to sit in the chair, and then I would get from there onto the ground and then crawl into the pool. I set down in the chair. Nami and uncle franc came over to help. They helped me stand up from the chair. "I wanted to get down on the ground and then go into the pool," I told them. They helped me get on my knees, and it seemed rather easy for everybody and I didn't feel like I would fall. I crawled into the pool, where I played with my kids and my cousins and it was a great time.
When it was time to get out, I crawled out, and tried to get up by myself, holding on to the fence. I couldn’t quite get it done, so my stepdad Dave came over and helped me by supporting me on my right side, which is my bad side. I stood up easy. I ripped up my toes on the concrete when I was trying to get up by myself, but it was minor and I cleaned it up easily with a baby wipe.
I sat in the shade and thought about how I had been worried about being able to swim, and how happy the kids were to play in the water with me. Thanks to Nami and Dave and Franc and my family for all the support, it was a happy moment. Spread The Word Check out the Whats The Matter With Me? podcast on Facebook, please review it and like it, hate it, whatever -- help me get the word out. You can Contact me here.
WTMWM? – S2, E8: The Disability Trap Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 8: The Disability Trap My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through.
The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider.
Find us on Facebook and please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org Episode 7 Recap Last episode, I took MS medicine by infusion and it knocked me out and burned me up, complained about reddit, new brace, I can zip up my own fly, for now. Shoutouts Shout out to Patrick-- it turns out he found out about this podcast from the time I posted it on Reddit so in fact even though I thought it was disappointing, I got through to people even though I didn't see it at first. Patrick is a young father with MS like me. He told me that he was inspired by What's the Matter With Me? and started his own Ms blog on Facebook called Taking It Day By Day- Patrick's MS Story. Check it out and many thanks and shout outs to Patrick.
I'm just going to keep it rollin' with the shout outs so shoutouts to Rocky. I know she listens because she responds to the episodes in text messages. She is a librarian and she is trying to get the American Library Association to divest from fossil fuels. She has started to reach out to divestment experts to help amplify her argument from an environmental as well as a financial viewpoint. It's very persuasive and I will put a link to it in the post on this episode on whatsthematterwithme.org. Shoutouts and thanks for listening Rocky. Click here to listen to her interview. The Disability Trap I watched an interesting short film called The Disability Trap by Jason DaSilva, the director of When I Walk, probably the foremost disabled filmmaker. He wrote an op ed in New York Times and as part of it included The Disability Trap, which raised some important questions. Before I get to that I noticed that the movie is about 13 minutes long, I think MS people make stuff that is about 13 minutes long and that's about right I guess. That's how I do it too. The film tells how in some states like New York, where Jason lives, the state provides one-on-one in-home care, so he live at home, be more independent and studies show he will have a longer life expectancy. His son lives in Texas, and in order for Jason to move there he will have to live in a home and he will lose a considerable amount of Independence and freedom. The point of his op-ed is that this creates an impossible choice whereby in order to gain proximity to his son he must relinquish his life as he knows it. It's from the New York Times June 24th edition, called The Disability Trap by Jason DaSilva. John's Birthday / Swimming It is so important tor me to be present as a father to my son, and I can’t imagine what Jason is going through. It's John John’s 5th birthday tomorrow and we are going to go to Santa Rosa to be with my parents. We will all go swimming in the pool. I might try and get into the pool it's kind of hard and I stubbed my toes a lot but I think I will try. I hope it is not too dangerous. Maybe I will try getting in on the deep end. I hope I can still swim. Hoppin Hot Sauce Movie https://www.youtube.com/watch?v=T1NqIaC1w_s
I made the Hoppin Hot Sauce movie where I spoke about how I have MS but I didn't let it stop me from cooking. I put it on my Youtube channel, and my customer email, where this month it was the top item. I was nervous about it, but the response has been uniformly positive. The gears are spinning and I am working on a few more videos already. Hoppin Hot Sauce is good sauce and social entrepreneurship and I ...
WTMWM? – S2, E7: Wacky Wednesday
Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 7: Wacky Wednesday My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider. Find us on Facebook and for goodness sake please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org
Shoutouts Shout-outs to Liz who is a DJ at the radio station where I host a radio show on Thursdays. Infusion I had my primary MS medicine infusion a few days ago. They hooked me with the IV, gave me steroids, also knocked me out. I came home and had to make food which was hard to put together because I was wiped out. I need to call a car or something. after infusion i'm toasted. The next morning I woke at 4:30 AM, my torso burning up. Nauseated. Maybe my appointment time was too late in the afternoon, and I got more or less hungover. /r/MultipleSclerosis fail I posted about this podcast in the multiple sclerosis subreddit. I asked people to post their favorite multiple sclerosis podcasts.I was looking for inspiration-- I want to find material that I can relate to. I got several responses but the first stood out. So here’s what I asked: “Please post your favorite multiple sclerosis podcast here! It can be a single episode or a series- I'm looking for inspiration. For my part, I'm a 38 year old husband and father, small business owner, and I have MS. I'm just trying to make it. I started my own podcast because I couldn't find podcasts that featured somebody speaking from our perspective. It's called What's The Matter With Me? and you can find it on Apple Podcasts or at whatsthematterwithme.org What do you all listen to? Thanks, John” From TornaydoTornahdo: “I would never listen to a podcast about MS. I can't think of anything more depressing than listening to people talk about that in my free time. I already have enough problems related to it. Having it be a presence in my fun/pop culture/whatever time isn't ideal. I know other people do want stuff like that, so I hope you get a lot of listeners.” I think this person was being honest and trying to look at it from both sides, and I appreciate that. Nevertheless, it’s always rough to get your first response a strong NO. Unfortunately, as the responses came in, I didn’t find much inspiration: no patient-produced material, just information about What Is MS? and like that. Informative, but not inspirational. It was kind of a let-down-- People always talk about Reddit like it can change the world, So maybe I set my expectations a little too high. There is probably another way to go about it that will yield better results. Because I don’t think this podcast is depressing. I think it’s the story of trying to overcome obstacles. I am a disabled person and because of that, my voice is marginalized. I gain power through the use of my voice to tell my story. Listeners, some with MS and others without, continuously reach out to report that listening has inspired them, offered a new perspective or made them feel better. I am thankful for that. Time To Replace My Ankle-Foot Orthotoic I need a new brace - the straps keep coming open, it’s hard to keep them fastened because the brace is past it’s lifespan. It’s a carbon fiber brace, and when they are new, they feel very springy but as they get a few years old, the life seems to go out of them. It’s got dings and scratches, and one of these is developing into a crack. I have an appointment to get it looked at in a couple of weeks. Can you give me a hand? I had my fly unzipped on Wacky Wednesday at my children’s scho...
WTMWM? – S2, E6: Awaker
Welcome to the Whats The Matter With Me? Podcast Season 2, Episode 6: Awaker My name is John, I’m 39 years old, husband and father of two, small business owner, radio DJ, podcaster and I have multiple sclerosis (MS), so I made this podcast to share what I’m going through The Whats The Matter With Me? Podcast is an MS podcast and it’s also about other things. I’m not a medical professional and you should not take this for medical advice. If you need medical advice, ask your healthcare provider. Find us on Facebook and for goodness sake please rate us. Download the Whats The Matter With Me? Podcast from Apple podcasts and Whatsthematterwithme.org
Shoutouts to my Mom Mom listened to the podcast, and she told me, "I listened to your pod." Isn't it funny how parents do that? They get creative with the lingo. She used to say, Intendo instead of Nintendo, and nowadays she does the same thing with text messages. She calls them tweets. "Tweet me," shje'll say. Or, "I tweeted you. Didn't you get my tweet?" Shoutouts to Mom, love you Mom. Email me using the contact form on the site, and I'll shout you out. Recap Writhing In Pain, Crunked Up or Crunked Out?, Coaches jackets, living in a hair gel air bubble, making music with my old compadre, accessible instruments, its good to be alive. It's all in the last episode, check it out. Drool "AAA!!" John John shouted as I bent over to brush his teeth, pointing frantically. I tried to look where he was pointing, but he moved whenever I turned my head to look. "Papa, you're drooling," he said, and laughed. I looked in the mirror, he was right, I had drool on my chin. The way things have been going, it was the least of my problems, but its a phobia I have -- to become a vegetable. It's just fear -- my drooling scared John John when I was brushing his teeth, it is what it is. If I can keep my mouth shut and stay focused, I'll be all right. Through the fence My most major fall since the last episode occurred in the backyard while I was gardening. First off, I am unhurt. I fell through the fence when I was trimming the garrya elliptica wavyleaf silktassel bushes. Completely through the fence, I ended up in my neighbor Tim's yard. The garrya bushes are low-growing and dense, and they were covering my feet. I reached out a hand to steady myself on the fence, it moved and I fell right through it. Nami helped me put it back together. The posts are cracked and rotting, it seems like the next strong wind will bring it down, but then in the morning it's still standing. Video I shot a video for Hoppin Hot Sauce wearing my new coaches jacket that I got screen printed in Oakland. It felt great and I think it might have looked great, fingers crossed. I read the following script: My name is John Hoppin and I created Hoppin Hot Sauce from chiles, Meyer lemon, garlic and spices.. I've worked in food all my life. I put hot sauce on everything, grilled cheese, lunch leftovers. It gives it a certain Tang that I prefer. I have multiple sclerosis and it makes it difficult to work in the kitchen environment. I didn't let it stop me from cooking. I made Hoppin Hot Sauce to share the taste of my table with yours. It’s all natural with no preservatives, and all good stuff inside. For people who want their food to taste the best, nothing beats Hoppin Hot Sauce. It made me feel powerful to write and deliver those lines. I hope it will turn out, I'll share it with you when I get it out of editing. Less sedation I'm on less sedation and it's feeling pretty good to be more alert. Maybe 'alert' is a stretch. I'm afraid of more pain, that the pain will wake up and rear its ugly head. For the time being, I am relatively awaker. Live in the present Live in the present moment.. I had this more-or-less standard revelation listening to music on the way to the farmer's market. There were a lot of wonderful fruits and vegetables that deserved my attent...
WTMWM 35 - S2, E5: Pain is bearable
Welcome to Whats The matter with me Season 2, Episode 5: Pain is bearable My name is John I'm 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis, so I made this podcast to share what I'm going through What's the matter with me is an MS podcast and it's also about other things. I'm not a medical professional and you should not take this for medical advice. However, if you need medical advice, ask your healthcare provider. Download The what's the matter with Me podcast on Apple podcasts and Whatsthematterwithme.org
Shoutouts Shoutouts to rocky Nate and joe. Recap Last episode episode 4 I was in so much pain. It almost made me angry but I think it was making me crazy. I was just writhing in pain check it out it's an interesting listen. Writhing in pain My last episode was kind of terrible because I was just in pain so much but this episode I can report that my pain level has downgraded from extreme pain to intense pain and maybe even bearable. Definitely bearable I'm going to put it in the bearable category and no one can stop me because it's my podcast. It's bearable Crunked Out, or Up I'm in the process of changing my trigeminal neuralgia medication. In order to do that I am currently taking both my old medication and the new medication. Since they both have a sedative effect it's I'm very crunked out. Or crunked up I'm not sure how the direction works there Coaches Jackets Coaches jacket. I went to Oakland and pick them up this morning. It was very tiring because like I said I'm totally crunked up or possibly out. It was a lot of driving and I hope I don't have to drive a lot more today LA Look I'm trapped in a bubble in the hair gel, because I'm overmedicated. Making music Joe was in my high school band. It was called okra blues and it was mostly Modeled after the Jon Spencer Blues explosion and RL Burnside. It was punk rock blues. He took his shirt off at the catholic school. Nowadays We Jam Together Nowadays We Jam together and I don't play a lot really anymore. I've listened a lot. My approaches different and it is more like meditation and exercising acceptance of the sounds I'm making. Accessible keyboard I'm using a ROLI Seaboard, an accessible keyboard with different ways of striking notes and making sound. It's good to have an instrument to play. Good to be alive It's good to be alive. I'm grateful for my family and friends. Every day's a new opportunity.7 things are changing with my pain situation it is evolving in the new medication seems to be starting to work.
What's The Matter With Me? Podcast - S2, E4: Bring It On Or Maybe Not
Hello and What's The Matter With Me? Season 2, Episode 4. My name is John I'm 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I'm going through. What's The Matter With Me? is an MS podcast and it's also about other things. I'm not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider. Download The What's The Matter With Me? Podcast on Apple podcasts and whatsthematterwithme.org
Shoutouts
Shoutouts to Patrick and Nat. In the previous episode I talked about answering hoppin hot sauce fan mail was my new favorite activity. But maybe answering what's the matter with me fan mail is even better?
Recap
neuro psych evaluation trippy wormhole. results later in the episode. things are blooming in the garden. hoppin hot sauce has started to exist beyond my immediate purview., out of the vicinity. various pains. shoulder has subsided somewhat.
Pain update - Trigeminal neuralgia pain, pinched nerve, back thrown out
My shoulder no longer keeping me up,. trigeminal neuralgia is worse. it hurts to talk, like stabbing electrical pain in my face, it is unbelievably concerning, it's worse at night. my back hurts but its almost an after thought.
Neuro psych eval results
Neuropsych eval results - trouble switching from mode to mode. I score high end of average which is probably low for me. It's hard to tell whether my brain my mouth or my motor skills are what is the problem
Pinched nerve
I have a pinched nerve in my neck probably resulting from some bulging vertebrae that were visible on My Last MRI.
Changing meds
Thinking about changing from Gabapentin
Hoppin Hot Sauce apparel
Coaches jacket
I Keep On Falling
Falling a lot. Because of my brace? Balance? Hurt my back falling in the yard and it has been aggravated by further falling.
Garden heat
sea daisies are turning brown
Pain
Bring it on, or maybe not
What's The Matter With Me? Podcast - S2, E3: Neuro Psych Eval
Hello and Welcome to Whats The matter with me? season 2, episode 3 My name is John I'm 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I'm going through What's the matter with me is an MS podcast and it's also about other things I'm not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider
Shoutouts
Shoutouts Bob nat rocky joe . Rate it on iTunes and Facebook
Garden
The garden is beautiful. There are a lot of purple Asters and yellow yarrow. Birds are singing and the whole nine
Hoppin Hot Sauce continues to exist
I have shipped a few dozen of hoppin hot sauce orders and shipped 5 today
Pains
Trigeminal neuralgia - eye socket and cheek bone Shoulder pain - in my muscles and ligaments
Neuro Psych Eval
Neuro psych evaluation. Dr bummer. Told her about how I'm a Good person, good looking and rich -- really just very blessed. Her next question, Do you suffer from delusional thoughts? We laughed. Making color patterns with s. the stimulus book I skipped the followup appointment to hear the results, i will have to hear them over the phone
Welcome to the What’s The Matter With Me? Podcast, Season 2, Episode 2 “Cafeteria” My name is John I'm 39 years old husband father of two small business owner radio DJ podcaster and I have multiple sclerosis so I made this podcast to share what I'm going through. What's The Matter With Me? is an MS podcast and it's also about other things I'm not a medical professional and you should not take this for medical advice if you need medical advice ask your healthcare provider Download the What's The Matter With Me? Podcast on Apple Podcasts and whatsthematterwithme.org Contacts Shoutouts to Rocky and Pat and some other people who contacted me to say they were digging this season premiere and looking forward to more. You can contact me using the contact page. Great new life activity A very validating new life activity that I have is answering Hoppin Hot Sauce fan mail. I am so glad to get Hoppin Hot Sauce out in the world. Take a seat in the cafeteria I went to John John's school orientation. It was in the cafeteria. I had to figure out where to sit. One of the teachers couldn't work a microphone. They passed out a handout that listed the topics they would discuss but no useful information about them. The principal talked about rules for a long time like the uniform and punctuality. I'm very excited, I'm just traumatized having gone to school already I didn't consider going back. Neverending jaw pain story I increased my dosage of Gabapentin because I was having jaw pain. It made the pain go away but it made me sleep all day. I have reduced my dosage and I feel some pain but very low on the scale like one or two out of 10. I'm not too sleepy or sedated. I'm taking 300 extra milligrams right now. A couple of days ago I was taking 900 extra milligrams. Something like that. I think I should get some guidance from the nurse. Keeping track One of the coolest things about this podcast is that when they listen to old episodes like from a year ago I can gauge how I feel now versus how I felt then and it is useful. I am doing a lot better than I was a year ago. Recording the voiceless I'm doing a special on KFJC about the musicologist Ian Brennan called Recording The Voiceless. He travels around the world recording prisoners, albinos, victims of genocide poverty and war. He's recorded in Vietnam and Cambodia. Rwandan refugees. Albinos who are stigmatized and even killed for the a white color of their skin which is considered to have special properties. The albinos have a tune called "Disability is not a crime". That's how I got into it. The way he records voiceless people is kind of similar to the way disabled people aren't given a voice, and I am concerned with that. I'll play my interview with Ian on Thursday May 24th from noon to 2 p.m. Pacific Time on kfjc 89.7 FM and kfjc.Org where there will be an archive of it for 2 weeks. Hoppin Hot Sauce is real Hoppin Hot Sauce is real and is produced and it's for sale at hoppinhotsauce.com. I'll discuss it in more detail in an upcoming episode. If you end up as a customer, maybe you will end up writing me some fan mail.
Recap I made 33 episodes in Season 1 and you can find them on Apple podcasts and whatsthematterwithme.org. I listened to them all and it just sounded like some guy complaining but that's just my thing I guess so I'm going to go forward. I increased my disability Consciousness throughout Season 1 and I intend to continue in Season 2. Contact Many people contacted me so I want to give shout-outs to some of them - Jose, Bob, Jersey girl, Black Cat, Nat, Peggy, and Brian. Thank you for listening and take you for writing me and offering me some support. Thank you. If you want to email me, visit the Contact page. Season 2 Gratitude So glad to be here for Season 2, Episodes 1 I feel pretty good let's go over what's going on. Piano Fall I was walking in the living room and I slipped and hit my face on the corner of the piano. It was gnarly and it gave me swelling and a black eye. Vacation in Sacramento We went to Sacramento and made memories. It was difficult because we were both sick and for the record I hope I will never go on vacation as a sick person again. We ate as a nice little cafe called Juno Cafe it was good. I had spicy pasta with calabrian chiles. They had house baked bread that was very delicious. It's very good Juno Cafe in Sacramento. That was the most vacation me moment I think. Sacramento is a great place for families. It's a bad place if you have an allergy. The pharmacist joked with us that Sacramento was planted with all these trees like a conspiracy buy the allergy medication sellers. I thought that was kind of a crazy joke to make in the pharmacy. We stayed on a docked Riverboat called the Delta King which was a lot of fun for the kids. We were both sick so we wanted to sleep all the time. There was a train museum. Crocker Art Museum was good they had Mexican and Peruvian Artifacts.
We picked Sacramento as a place to go on vacation because it was close. And our vacation was in April so it wasn't going to be too hot. It was chosen so that maybe we could make it, and we did and I'm glad. It was difficult cuz we were sick but we Soldier through it and we saw a lot of cool stuff and I think the kids really enjoyed themselves. On the ride back we were all tired. Jaw pain I have had trigeminal neuralgia since then and varied from intense pain to sleeping all day and it's been a struggle as usual. It's wrapping up though I hope. It's hard to tell but I think it's on the wane. Thanks for listening.
Welcome to the Season Finale Welcome to the What's The Matter With Me? Podcast, Episode 33: A Scrap Of A Dad Is Still A Dad. It's the NBD season finale.
My name is John, I'm 38 years old, husband, father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis so I made this podcast to share what I'm going through. What's The Matter With Me? is a MS podcast and it's also about other things. I am not a medical professional and you should not take this for medical advice. If you need medical advice ask your healthcare provider.
The What's The Matter With Me? Podcast is available on Apple Podcasts and whatsthematterwithme.org Recap Episode 32 Last episode, I meditated that social media was like the mirror scene from Enter the Dragon, the final match where Bruce Lee fights Han. They played it during setup at Lollapalooza before Smashing Pumpkins in 1995. Some listeners wrote me about the Wahls protocol. We talked about how this episode is the season finale and plans for the future. There are new plants in the garden. I am happy to say that my disability conciousness grew a lot in season 1. Stay tuned for more in season 2.. Listener Mailbag Listeners wrote in to say the podcast meant a lot to them and I want to give a shout out to those people and express thanks and gratitude. I am extremely happy and immensely gratified to provide support. Thank you for listening, reaching out, contacting me and in turn supporting me.
I'm overjoyed when listeners write me. You can contact me using the form on whatsthematterwithme.org. While you're there, why not Subscribe to our action network. In The Handicap Space Another parent was parked in the handicap space on Monday. I was dropping off John John and Koko. She said she was late for work. I said that may be true, but this is space is not for convenience, it's for access. I told her I was a parent too and that it wasn't personal. She said again she was late for work. I told her that I thought it was for access not convenience, and that furthermore her car was in my way and creating danger for me because I have to "go off-road" with my two kids. I have hurt myself very seriously doing the same thing before. Letting it slide would have been my preference, but when she started justifying her presence in the space, I had to say something. My kids were watching.
A Scrap of a Dad The Diving Bell and the Butterfly The Diving Bell and the Butterfly (2007) was directed by Julian Schnabel about Jean-Dominique Bauby, played by Mathieu Almaric, who was the editor of Elle Magazine. He experienced a major stroke that left him with a case of what is often called "shut-in syndrome". He had no way of communicating, or moving other than blinking his eye. With the help of a speech therapist, he learns to communicate using only blinking, and writes his memoir. The movie uses point of view cinematography after the stroke and scenes from the memoir are shown as flashbacks. "Bauby assured people of an indestructible human essence inside the destructible human body." - Mick LaSalle, San Francisco Chronicle Fear of being shut in Roger Ebert pointed out that Julian Schnabel has now directed three movies about artist creating in the face of obstacles. Basquiat, about a New York graffiti artist, Before Night Falls about persecuted poet Reynaldo Arenas.
Roger Ebert said he feared shut-in syndrome during his jaw surgery. MS can shut people down - I feel the same way, and this is so terrifying. I think this is why it had such an effect on me.
Phone call A Scrap Of A Dad The film affected me most when he spoke about being a father. In one scene, he is on the beach in his wheelchair with his family. He reflects upon his inability to offer touch to his children. He is sad, but he says that even a scrap of a dad is still a dad. This greatly affected me. It made me cry.
Something I really struggle with is accepting my limitations in the context of f...
Enter The Dragon In this episode, I tell all about the last scene in Enter the Dragon and how it connects to my experience going to Lollapalooza in 1994, the Wahl's protocol, and the upcoming Season Finale in Episode 33. Inspired by playing Episode 1 in the last episode, I compare where I am then and now. Episode 31 Recap Last episode, Yoko was here. She in Tokyo now, but things continue to happen to me, so let's talk about them. I fell out of the shower. I saw my MS doctor and we discussed my recovery, and I told him the blanket analogy about how MS is like being trapped under a blanket that can be very heavy at times. From the never-before-heard ancient history, I played Episode 1, about a visit to the occupational therapist, challenges with hot sauce manufacturing, and the desire to share my disabled experience both good and bad. I wonder aloud, should I be on disability? I told the blanket analogy to my occupational therapist. I resolve to try and make something out of crisis. Enter The 36 Echo Chambers The echo chamber of social media is like the final scene of the great Bruce Lee movie Enter the Dragon where he fights Han with all the mirrors. When I went to Lollapalooza in 1994 before Smashing Pumpkins came out they played this scene. I went to Lollapalooza see the Beastie Boys, and I thought Parliament was especially memorable because they had a guy dressed as a baby. Bootsy Collins was very far out. Cypress Hills was there, and Guided By Voices too, but I wasn't hip enough to be up on that yet. I was fifteen, and I remember being confused. Wahl's Protocol Listeners wrote in on the website and the Facebook page to ask if I knew about Dr. Terry Wahl’s protocol, which is a dietary approach to fighting multiple sclerosis. One of the few things that seems to really affect how I am feeling is what I'm eating. Because of this, I try to cook as much as I can myself using minimally processed ingredients. This way I know more about what is going in to my body, so I can easily make changes and modify my approach. Episode 33 Will Be the Season 1 Finale The final episode of the season will be the next episode, Episode 33. I'm going to take a pause for a long-overdue upgrade to my computer and audio equipment. In advance of the Season 2 Premiere, I'm going to put season 1 back online. I'm already speaking to different people and making efforts to expand my network, so I can bring new voices and perspectives to the podcast in Season 2. Expanding my vision will increase my podcast's Disability Consciousness, grow understanding and make our community stronger. New Growth Last week the landscaper was here and we planted new plants in the garden, cut some old ones back, and retired some others. New arrivals include red snapdragon, mexican sage. Everything is looking great in the garden and getting ready for Spring. Differences from Then to Now Listening to last episode, I was struck by how different things were in Episode 1 in comparison to the present time. In Episode 1, I wonder about getting disability. I applied for disability and received it in Episode 20, five months later. I got my ankle-foot orthotic (AFO) brace in episode 1, but it took until Episode 8, two months later, before I could wear it without too much pain. Even though it still hurts, now I wear it every day. I'm looking into getting a scooter, so I can increase my range and go farther. The best difference is that I feel better and more positive. Stay Tuned Tune in to Episode 33 for a look back on Season 1 and how we'll get ready for Season 2.
Doctor Visit In this episode my wife's mom was visiting, I fall out of the shower, I visit the my doctor at the Stanford multiple sclerosis clinic, and play Episode 1 which is a really validating experience, because many of the themes still resonate. Episode 30 Recap Last episode, I exhibited at the Winter Fancy Food Show which was a big step forward for my business. Fulfillment, sales and following up arer ongoing. Getting it together was a lot of work and I experienced some cognitive slowness as a result, and in the episode I told a little story about that. I played Episode 2 in which I shared my intention to get better. Feeling Better My wife's mom Yoko just flew back to Tokyo after staying with us here in San Jose for a couple weeks, and while she was here she told me that I looked better. She said that I seemed sharper and more with it and better in my eyes. I guess I did get better, because I feel better, like I am recovering and getting better. Thanks for listening to my podcast, because it helps and supports me. I Fell I fell out of the shower covered in soap. I dropped the soapy puff, and some soap got on the ground and flew out of the shower. Somehow, I emerged unscathed. Doctor Appointment My doctor said that my current MS medication was probably working OK enough not to change it, that my past medication probably hadn't worked, which led me to experience greater symptoms and lose functionality. He said he thought that my disease activity could be too microscopic to detect, and that was how nothing showed up on my MRI. Good To Be Young He told me that it is good I am young, because I had time to heal. I told him the blanket analogy that I use to understand MS: that it is like being under a blanket with no edges, impossible to escape. Sometimes heavy and other times lighter, you are always under the blanket. Episode 1 Without further ado, it's time to go back to the beginning: Episode 1. Only a few people ever got this, over e-mail. In this episode, it's the month of Mayhem at KFJC, and I go to in for an Occupational Therapist Visit, where I share about Hot Sauce R&D and my Workforce Vision. Droll It's the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures.
Occupational Therapist Julie I went to Stanford to visit the occupational therapist. We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment. I got on a tangent and had to flush the segment down the toilet. I start over again. I ask Julie if I should be on disability. She showed me how it could help me. I got approved for disability in Episode 20 and I went through further feelings about it in Episode 21. Improbably, I told her the blanket analogy! I told her about how I believe in trying.
Going for it It was great to hear so many familiar themes: the struggle, endeavoring to try, and cultivating positive healing intentions. I'm very happy with the way things are going.
What's The Matter With Me? Podcast Episode 30 My name is John, I'm 38 years old, husband and father of two, small business owner, radio DJ, podcaster, and I have multiple sclerosis. I made this podcast to share what I'm going through. Disabled entrepreneur Episode 30 of the What's The Matter With Me? podcast revolves around promoting my brand at a trade show as a disabled entrepreneur with MS. It was really fun and a major step forward for my business. Check out the episode for more.
Transcript:
Welcome to the What's The Matter With Me? Podcast Episode 30: "Disabled Entrepreneur." My name is John. I'm 38 years old, husband and father of two, small business owner, radio DJ, podcaster. And I have MS. I made this podcast to share what I'm going through.
Recap last episode. I was talking about shoelaces, and some listeners wrote me back on the What's The Matter With Me? Podcast Facebook page. That was cool. Thanks for hitting me up. I'm going to check out your suggestions. And then steroids. I took my MS drug Rituxan, and I had to take steroids. We had a little discussion about MS drug fatality risk. I talked about that I was going to the Winter Fancy Food Show. We'll talk about it in a minute. It was cool. And then I played episode 3, the throwback episode. Check whatsthematterwithme.org.
I went to the Winter Fancy Food Show yesterday. It was a massive deal for Hoppin Hot Sauce first and foremost. But it was a big physical challenge for me as a person with MS. I had a lot of anxiety about it, leading up to it. I was also just doing a lot of work, so it was pretty stressful. I'm glad it's over. I'm still decompressing. It was just yesterday. In fact, I'm kind of still in work mode. I'm sending invoices and filing stuff and getting ready to reach out again. So I guess it never ends, but Winter Fancy Food Show was great. We were set up in a row of young entrepreneurs. The guy on the right to me made a bunch of different kinds of hummus and interesting … he was Persian, interesting Persian products.
The partners on the other side were a man and a woman, and they made cookies out of tofu production secondary stream products. Which means stuff that's usually a byproduct or a throwaway product. They used … they made it into flour, like some residue from soybean into flour. They wanted to make tortillas and all kinds of other bread products. But they make at this time cookies. That was cool to be next to them.
There were a lot of attendees walking by, thousands, throughout the day. We were in between Moscone North and South, kind of at the entrance of the hall in this kind of corridor, outside the elevator. Anyway, it had lots of people. It was a good location, because many people passed by and you could get them to sample the products. And so I'm a natural hawker. I'm like, "Hey, you." Make eyes at people. They love me. I say stupid things. I'm great if you like a stupid hawker. I'm bad if you're, like, wanting a highbrow afternoon. I'm not going to give it to you. I'm like to people … I'm like, "Hey, you know. I think you should probably try Hoppin Hot Sauce. It'll change you."
I just say … I think other people don't say weird enough stuff, or they say boring thing. "Would you like to try?" I didn't want to do that. I mean, how could I say that? I'm not that kind of guy. "Would you like to try a sample? Sample?" No, no. No. I'm just like, "Hoppin Hot Sauce will change you." You know what I mean? If I don't get them the first time, I'll just be a little firmer. I didn't hector or harangue anyone. I made a note beforehand, "Do not harass anyone walking by the way you know that you are just liable to do. No potshots. Highbrow only. Keep it clean." Yeah, I did it. It was good.
There were some folks there, though. You know what I mean? A big old conference in San Francisco has some people looking of some type of way at the conference. It is great. There was a guy with crabs on his pants.
Welcome to Episode 29 of the What's The Matter With Me? Podcast: "Rituximab Infusion" In this episode we'll take a look at:
no-tie shoelaces last week's rituximab infusion (my multiple sclerosis medication) Hoppin Hot Sauce's inclusion in the Winter Fancy Food Show Pre-history throwback pilot Episode 3, in which I have a hard time asking for help
NOTE: Most of the early episodes are offline for maintenance, and I'll put them back as soon as I can get around to it. Thanks for understanding. No-Tie Shoelaces In What's The Matter With Me? Episode 29, I spoke about moving on from shoe laces, and soon after I recorded it, I was looking for new shoes.
I bought Asics Gel Nimbus shoes with no-tie shoelaces and they are working out for me. They are black Asics running shoes with white soles.They look pretty much like regular shoes but the laces are made of elastic so they function more like slip-on shoes. They are kind of stretchy to move in and it takes some getting used to. At first I felt self-conscious wearing them but now I like the way they look. They ran me $160 on Zappos which is pricier than I'm used to but the shoe is a lot easier to use than New Balance 574 Classics which run around $75. They are so much easier to get on and off, and that saves a lot of time and energy, things in short supply. Rituximab infusion Last Tuesday I got my infusion of rituximab which is my primary multiple sclerosis medication. My appointment was for 1:30 p.m. but I had to take Benadryl and Solu-Medrol as precursors. Because it was the afternoon and I was taking powerful steroids like Solu-Medrol, I had trouble sleeping that night.
Rituximab is a prophylactic-type medication and I don't usually feel a difference right away. I think it is helping me but I am continuing to have multiple sclerosis. It is not healing me for sure. It's hard to tell, maybe it is protecting me from getting worse. That is a hard situation for multiple sclerosis patients like myself, because you can't tell whether your medication is working or not.
I'm getting older for sure and that is no easy ride. So there are challenges for everyone always across the board. I have a lot on my plate and I have to stay focused. I'm glad rituximab infusion isn't causing me any major problems. Talk less, act more
Remember last episode I told you that my New Year's resolution was: "Talk less, act more." I spoke about wanting to get my brand out there. Well, things are happening, and fast! It's exciting.
Hoppin Hot Sauce will take part in the the Winter Fancy Foods Show as a part of KitchenTown's Incubator Alley booth at Moscone Center on Tuesday, January 23. I have been given an opportunity to jump-start my brand, to move from prototypes to orders, and to make my brand real. The time line is very tight and showtime is 8 days away. It is taking all my time and fatigue is tough to manage. I am intimidated by my workload and I need support to avoid getting into an emergency. I am reaching out- it is working. Letting people know about the challenge I face is getting them on my side. I need the discipline to delegate and manage properly. Baby chives Baby chives are growing in the winter garden. I can find peace and hope in the natural cycle of renewal and the good, right energy of growing plants. Pre-history throwback Episode 3 Episode 3 revolves around having to ask for help, and the complicated feelings that go with that. I need help, but I don't want to ask. It's cool to hear old episodes, because of slight differences in the way I approach my disability. Nowadays, I feel a lot less hemming and hawing asking for help. This podcast has given me the strength to ask for help, and to be comfortable with myself. That is a good thing.
It's a New Year and time to move forward Last episode of What's The Matter With Me? Episode 27 wasn't very focused and I could have explained myself and foregrounded what is going on with my Multiple Sclerosis disability more effectively. The title of this podcast is What's The Matter With Me? after all. I resolve to run things a little more by-the-book this year. For this episode, at least. Cafe Oto Crowd outside Cafe Oto in Dalston, East London
Last episode, I reviewed Marshall Allen's Volcano Quartet CD Volcano Swing, a live performance at the BBC in London, where he was in town for three nights at Cafe Oto. Listener Chris lives there and wrote in to let me know about the location, in Dalston, East London, and some live shows he had seen there. It sounds groovy and I hope to check it out myself someday. Never give up I can have a bad episode. A terrible episode. Ghastly. But I won't give up or cede an inch in any direction.
I discussed in Episode 25 as well as Episode 4 that I won't give up. The pressure to give in and let go of the rope and drown in my disability is extreme. Multiple sclerosis is suffocating and pervasive. I have been dumped and it felt very bad -- I bet that anybody having a hard time with something feels the same. Tapering Medication I called my neurologist to request help with tapering down Gabapentin, they said I'd get a call-back in 24-48 hours, but they called me back in about an hour. I was concerned because I had adjusting my own dosage without any guidance, which is bad practice. The nurse told me that my dosages had been fine, and outlined the boundaries for my pain meds. My dosage is back to normal, and I am not in pain. No-tie Shoelaces and shoelace replacements I've bit the bullet and decided to get rid of my laced shoes. I've got some no-tie shoelaces which turn my shoe into slip-ons. They're working OK but my shoe feels like it might fall off. I'm glad to be done with shoelaces because they came untied and I wouldn't retie them. I've got some shoelace replacements in the mail. I'll go over them in an upcoming episode. Disability Visibility Project Disabilty Visibility Project Alice Wong icon
Disability Visibility Project is a platform for creating, sharing, and amplifying disabled voices created by disabled activist Alice Wong. I said in Episode 25 that in 2018 I would bring new voices to the podcast and the Disability Visibility Project is part of that effort. Interrupting the Uninterruptible I hosted the Blues Collective with Jack Tar from 10am to 2pm on KFJC yesterday,. For the first hour, Jack plays the music and runs the mixing board while I sit below in the interview area. At 11, we switch places, and I run the board and he is below on the mic. We do it again at noon and at one.
While it was my time to run the board, I played the same song twice. I put my foot on the wrong place and unplugged whata the engineer told me was the "Uninterruptible Power Supply" -- it turned off the CD players, the lights -- pretty much the entire station! I ferlt like I lacked focus or was fatigued, and I messed up the show.
Everybody feels that way sometimes. "Uninterruptible"? All I had to do was unplug it. New Year's Resolution Talk less, act more. This podcast is a bit of both. Don't think too hard about it.
Episode 27 "New Blog / Throwback Episode 4: Help" As my limitations from multiple sclerosis increase, I've had to get comfortable asking for assistance. Asking for and accepting help is one of the secrets of effective people. Or so I'm told.
Winter rolls on. I continue to produce content and work on the site daily. Being with family and experiencing multiple sclerosis or disability can be difficult to manage, and pressure only increases during the holiday. Papa's Got A Brand New Blog I've added a blog to the site, and I discuss my first post, about a disabled woman's social isolation. Episode 4, "Help" from the pre-history, chronicles never giving up, in an echo of Episode 25. I never stop reviewing records I am reviewing Marshall Allen Volcano Quartet's CD Volcano Swing. Marshall Allen was part of the Sun Ra Arkestra and this band is a continuation of that. They were in London in 2011 when a volcano exploded in Iceland, grounding all flights. The band took a three-day residency at Cafe Oto in North London.
They stopped by the BBC Radio to promote the gig and recorded this CD. At the end of the CD there is a live interview and Marshall Allen reveals that he was a member of the Sun Ra Arkestra trapped in Seattle when Mount Saint Helens exploded in 1984. Pretty awesome, it makes it clear that a musicians life is always about getting that next gig in line. Episode Synopsis
It is cold in the garden and there was light frosting a couple of times this week I've got a new blog People in wheelchairs are judged and face cruel realities Marshall Allen Volcano Quartet "Volcano Swing" CD review Throwback Episode 4 "Help"
The holidays are almost over -- just New Year's. Hopefully I'll hike somewhere good.
Slogging through the holiday with MS and trigeminal neuralgia pain I fell and ripped out the belt loop from my carpenter pants Throwback to the pilot: Episode 5 when I had an MRI reaction and a boil on my butt - gross
Mary from Friends NYC @friendsnyc picked out this sweater
I‘ll Never Give Up - Look at my window: I’m alive. I didn't quit doing this thing that is very scary - to share. I have built my disability consciousness and that will continue. I am going to bring new voices to the podcast in 2018. I figured out what I'm going to do about the handicap space at my children's School- get help from the administration. I am going to release the email only episodes to get ready for the New Year.
The photograph is of an accessible cutting board I recently began using.
What's The Matter With Me? Podcast Episode 24: Hole Recovering from Multiple Sclerosis and moving my small hot sauce business forward "Hole in the wall", A fall story I tripped over myself in my bedroom and punched a hole in the wall. It was klutzy and embarrassing, but at least the wall took the worst of it and I came through okay. I'm in recovery My Nurse Practitioner told me I was in recovery from MS and that changed my perspective. I have been in a defensive stance, and I can begin to makje positive steps forward. Hoppin Hot Sauce -- Extra Hot I'm spending all of my time creating a new flavor of Hoppin Hot Sauce, Extra Hot. Positive vibes Keep things positive and moving forward in a good direction, and everything will be all right.
Episode 23 Thank you for tuning in to the What's The Matter With Me? Podcast. In Episode 23 Roll With The Punches I fall asleep at the KFJC meeting, hang in the yard, experience intense Trigeminal neuralgia pain, and read an old song lyric I wrote called "Roll With The Punches." Fatigue I fell asleep at the KFJC weekly station meeting and that was distressing. I woke up and everyone was looking at me. It shook me and later in the evening I fell off the station couch awkwardly. I go to KFJC to relax and these kinds of things make that difficult. Yard hang I went in the yard with John John. It was a sunny warm day and we took our shirts off, wrapping them around our heads. We laughed a bit and smiled. It was a good thing. Trigeminal Neuralgia Pain I have been experiencing pain from trigeminal neuralgia in my right lower jaw on the buccal side. It feels like going to the dentist, and when they say "it's going to pinch" before you get novocaine and then it pinches and won't stop pinching all night long. It's very hard, and I hope it stops soon. Poetry reading: "Roll With The Punches" I read a song I wrote called Roll With The Punches. Check it out: Roll With The Punches
You gotta roll With the punches sometimes Sometimes, You gotta roll
You gotta know Who’s on your side Just as much as Who’s passing you by
Don’t have no glass jaw O Hell Naw When you get knocked down You gotta stand up tall
You gotta bend but don’t break Give em all they can take And a whole lot more Until you hear em hit the floor
You gotta roll With the punches sometimes Sometimes, Sometimes.
-John Hoppin, 2013
Welcome to What's The Matter With Me? Podcast Episode 22, "Gallons, Untied Shoes, Commes des garcons/Rei Kawakubo, Surplus Store Shopping" In this episode: New hot sauce size -- Disaster: Shoes came untied -- Changes in disability is like wearing Rei Kawakubo/Commes des garcons clothes -- A good time shopping at the surplus store New hot sauce size Hoppin Hot Sauce now comes in gallons, for my foodservice clients. It's so they can re-use bottles. Disaster: Shoes came untied My shoes came untied durinf my radio show and my cohost untied them. He was older than me, and it was thought provoking. Changes in disability is like wearing Rei Kawakubo/Commes des garcons clothes It's ungainly and strange; people look at you funny. No one, including myself, knows quite what to do. I read some commentary about the avant-garde fashion designer Rei Kawakubo and I found commonality with my experience as a disabled person.
A good time shopping at the surplus store
I went shopping with my family at the surplus store. We got a lot of things that we needed, it wasn't too difficult. My family helped me a lot.
Welcome to What's The Matter With Me? Episode 21, "Complicated feelings about Federal Disability, Falling, Nasty Tracksuit" In this episode: Qualifying for Federal Disability Pt. II -- Two Falls, One Painful, and The Other With Wine -- Going Shopping and buying a tracksuit with filthy pictures on it that my wife asked me not to wear around her or our children
Welcome to What's The Matter With Me? Episode 20, "Disabled dad struggling to build my business and my life" In this episode: I Fell -- Sweating -- Boathouse Hike -- Secretary of State -- Hot Sauce Business -- Disability Hand rails are useful for people with MS and other disabilities. I took this photo outside my dentist's office in Santa Clara, California.
Welcome to What's The Matter With Me? Episode 19 Wild Fires Wildfires are burning close to my family's home in Santa Rosa. The hill behind the house is Annadel State Park, currently on fire, and the fire department is bivouacked in the otherwise-evacuated neighborhood. Accessible music I've been making music to meditate and feel and comfort my body, accessible music using the computer and MIDI. I am getting used to making "muzak" on the computer, and pushing my own boundaries. Houseguest I have a houseguest, a person that I don't know very well. It's fun. Leg pain My leg has been bothering me.
Welcome to the What's The Matter With Me? Podcast, Episode 18 In this episode: Fight/Cook Cycle -- Spare rib recipe -- Artist Statement An artist statement is hard to write -- it requires you to believe in your own importance.
Welcome to What's The Matter With Me? Podcast,Episode 17 Nurse Practitioners -- BBQ -- Sunday date blowup -- Cognitive wall -- Foot Wound -- Radio -- I'm proud to be disabled
Welcome to What's The Matter With Me? Podcast Episode 16 Lamp destruction - Cognitive Exercises - Best American Sportswriting 2015 - Electromagnetic sock sales - The importance of this podcast
Welcome to What's the Matter With Me? Podcast Episode 15 I start the episode off with the handicap space for the third episode in row. My garden gives me room to breathe from the grasp of disability -- but I supplement with physical therapy and mindfulness practice. I'm teaching my son to watch birds and he made a correct identification.
Handicap space Part 3 -- Falls -- Tomatoes -- Gardening -- Socks -- Disability -- Bird ID
Hot Sauce On An Oyster, photo by Brook Lane.
What's the Matter With Me? Podcast Episode 14: Autistic son I read the NY Times Disability column about an autistic son finding purpose. Hot It was hot: 114F! Fell and hit my head I fell hard and cracked my neck on dining room table. 20th High School Reunion I looked for acceptance at my 20th HS reunion.
I took this picture with my wife at the home of the Japanese Consul General in San Francisco. What's The Matter With Me? Podcast Episode 13 Figs growing in the garden -- Charcot's Triad -- Feedback -- 109 Degrees -- Friends -- Defending the handicap space
This is a photograph of Hoffee's Auto Body Shop in San José, California on the last day of business before closing. David Li owned the place and was my family's mechanic for over 20 years. Episode 12 Figs -- Gruesome Fall -- Charcot's Triad -- Controlling Emotions -- Burn at the BBQ
I've been falling and hurting myself. I need to slow down and be safe. Hurrying makes accidents. At the same time, I need to control my emotions and manage my MS therapy for the sake of my family and my business.
Birthday Party -- Steak -- Cognitive Disability in the Dressing Room -- Fish Oil -- Garlic Season -- The Deaths of Ted and Larry -- Stone in the Ocean
What's The Matter With Me? Podcast Episode 10
Purpose -- Ep. 9 Recap -- John John Sick -- Ballgame Fiasco -- BBQ -- Crying, Pressure -- Rose Trimming
We left, we went to a beautiful wedding in Boonville. They had an oyster bar and I ate there with a couple friends. That was a really nice activity. The food was wonderful. The wedding was beautiful. One of the brides wore a leather wedding dress made by Valentino. The wedding had caviar on a runcible spoon and a fine Italian wine at the meal.
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What's the Matter With Me? Episode 9, "Wedding In Boonville."
Yeah, it's What's the Matter With Me? Episode 9!
My name is John. I'm 38 years old. I have MS, I made this podcast to share what I'm going through.
Fundraiser Script
Information Orangutan
Couch Potato OneCouch Potato TwoInformation Orangutan
The sound of a live performance. They're watching it on a stream, on a computer.
Couch Potato One: I think this KFJC live stream is melting my face off.Couch Potato Two: I am taking serious damage.
Computer error.
Coach Potato One: Oh, no. Aww, something's wrong with our computer and we need to fix it.Couch Potato Two: We need to call the IT person.Couch Potato One: Get the phone book. Look it up. What does IT stand for?Couch Potato Two: Information something or other. Here it is, Information Orangutan.
Phone call. Dialing.
Information Orangutan: Hello, Information Orangutan... Information Orangutan, you rang-a-dang-dang, dang.
Chicken sounds and wailing off-mic, in the background, like Screamin' Jay Hawkins, and also Harry and the Hendersons.
Couch Potato Two: Hello our computer is malfunctioning. Lots of errors and "does not compute."Information Orangutan: Be right there.
The sound of a time and space portal opening. The Information Orangutan steps out of it into the couch potatoes' living room.
Information Orangutan: Information Orangutan, you rang-a-dang-dang?
Off-mic chicken sounds and gibberish wailing.
Couch Potato One: Our computers aren't working.Couch Potato Two: Our computers aren't working and we need you to fix them!
More chicken sounds, and wailing.
Couch Potato Two: Dude, I think he's not going to fix our computers. I think he's just an orangutan.Couch Potato One. We went about this all wrong. We should have called (650) 941-6800 to donate to the KFJC fundraiser, and nothing bad would ever happen to us after that.Couch Potato Two, If we ever get the internet working again, I will go to KFJC.org and donate online.
The Information Orangutan's unintelligible holler …
All right. So, that was a script. I guess you might have guessed that was a script I'm writing or that I wrote. Fundraiser season at KFJC, the radio station that I have a show on, on Thursdays, that's coming up and so we need advertisements. I guess that was me reading this script I wrote, called Information Orangutan. I had this idea- I just, literally had the phrase in my mind "Information Orangutan, you rang-a-dang-dang?" And so I wrote that just so I could use it. It'll be interesting.
Supposedly, at the KFJC staff meeting tonight, we are meant to record that, so we'll see. We'll see how it ends up. I mean it's kind of long, it took three minutes.
What's the Matter With Me? Episode 9, "Wedding in Boonville", welcome. Thank you for listening. Thank you for joining me.
Recap of "Big Week."
I went to the barber shop. I had my annual checkup with the doctor.
I have to make a correction. I said "cerebrum"… I should have said cerebrum. I said "cerebellum" and the cerebellum is underneath the cerebrum. I meant the cerebrum, the big brainy part of your brain, not the brain stem or interior brain. The cerebellum.
Rituxan infusion
So anyway, I did that. I had my radio show, I talked about poverty with my therapist. I went to a birthday party. I got my Rituxan infusion, in Stanford on Friday for four hours. I got pumped full of steroids and Benadryl and Rituxan. So I sat there and slept, this odd state of being totally pumped up and also sleeping.
Family in Santa Rosa
What's The Matter With Me? Podcast, Episode 8: "Big Week" My name is John, I'm 38 years old, husband and father of two, radio DJ, podcaster, small business owner and I have MS (Multiple Sc;erosis). I made this podcast to share what I'm going through. Recap Episode 7: "Bread Moment" It was very hot, and now it's rather pleasant. I've been having a peaceful week with my wife because when it's hot I am grouchy. I also told the story of being afraid of Chad Robertson, my bread hero. I baked bread by this guy Chad Robertson. One day I was at a restaurant and I was with somebody who was kind of hooked up and the waiter was like “hey over there is Chad Robertson want to meet him?” And I was like “uh, it's cool.” I was scared to. I was intimidated, man. Anyway, he makes great bread. It's a hard story to tell, a time when I didn't live up to my own standards. Anyway episode 7 check it out. Big Week Last Tuesday I got my haircut, my beard shaved, lined up. Elvis at the barbershop did me all right. I was getting ready, I had a big week, so let's go. MS Doctor Later that day I saw my MS doctor for my annual checkup. We reviewed my MRI, and I am in radiological remission, which means nothing is showing up on my MRI, which means I'm not getting new brain lesions or other disease activity that the MRI scan can see. Then we took a trip through my brain, it was kind of cool. My doctor was like, "Okay let's look at your MRI. This is how it works top down." He starts going through the images, wow. We took a trip through my brain. My doctor noted that my cerebellum is pretty clean. That's like the top of my green, the big brainy part. But my brain stem has a lot of lesions, and they are old lesions. They affect my ability to walk, swallow, get up and talk actually. All the stuff I know because I experience it but it was interesting to learn that is caused by lesions in my brain stem. Rituximab We've decided to continue my current treatment which is rituximab, that I take in a 4-Hour infusion every 6 months. We were all shocked to learn I was about six weeks late for my rituximab infusion, and I guess it fell off the table. After the appointment, the staff and I scheduled it I'm going to have an infusion on Friday in a couple days time. Even though we scheduled at the last minute, they hooked me up. Stanford, shout outs. The studies on rituximab are 18 months long. I haven't reached that time yet so we're going to continue my treatment, even though obviously I'm not healed and I'm still experiencing walking swallowing and thinking problems, among other things. I told my doctor about this podcast, I told him to check it out. He was pretty stoked actually. I told them that I do this for my own therapy, to get better, which is why I do it, it makes me stronger to do so I love sharing. Boom! I'm stronger now. Then on Wednesday, the next day I got a new ankle-foot orthotic brace which helps me walk, and not sprain my ankle and have balance. It's good! AFO: Ankle-foot Orthotic But it was kind of a mixed bag. I wore the new ankle-foot orthotic, they call it an AFO.
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What's the Matter With Me? Episode 8.
Yeah. It's "What's the Matter With Me?" Episode 8. My name is John. I'm 38 years old. I have MS. I made this podcast to share what I'm going through.
Recap episode 7, it was very hot. And now it's rather pleasant. I've been having a peaceful week with my wife because when it's hot, I am grouchy. And I also told the story of being afraid of Chad Robertson, being my bread hero. I baked bread by this guy, Chad Robertson. One day, I was at a restaurant, and I was with somebody who was kind of hooked up and the waiter was like, "Hey, over there's Chad Robertson. You want to meet him?" I was like, "Uh, it's cool." I was scared to. I was intimidated, man.
Anyway, he makes great bread. It's a hard story to tell, a time when I didn't live up to my own standard. Anyway, Episode 7. Check it out. Last Tuesday, I got my haircut,
Bread Moment My name is John, I have MS, I'm 38 years old and I started this podcast to share what I'm going through. Recap Episode 6 Episode 6: "Overwhelmed" was short but impactful the way short things can often be. Like Mike Tyson said, “Everybody has a plan, until they get hit in the mouth.” Last episode was basically nothing but a long recap, and then I got distracted telling how I made tomato sauce. I gave up and I just stopped the whole thing after like two and a half minutes. It's very hot right now It's hot outside. I fell down yesterday in my garden. My thoughts bubble up through my mind like my mind is full of mud, like a primordial ooze and my thoughts bubble up through it. They come very slow, I'm like, “me hungry.” It's like that. Uhthoff's effect I feel some fatigue from Uhthoff’s effect, which was discovered in the 19th century by a German neurologist who discovered that people with MS feel bad when they're in the sun. I totally agree with this. Too much argument I've been having a lot of arguments with my wife. I'm super short-tempered. I argued with my wife on Friday, Saturday, Sunday, Monday, Tuesday and today, Wednesday, even though I saw her for only 5 minutes this morning I managed to get upset with her. Being a salamander It's so hot I just don't move. We call it being a salamander.I try and sit there and do as little as possible. Josh is baking My friend Josh is talking to me about baking bread and reallystimulating. I used to make a lot of bread. I'm in the hot sauce business, but I thought about making bread and coffee and I still think about it. I love making bread and growing plants. I'm a gardener, you know it's all like making bread, growing your family it's all the same having a garden, pruning a plant. So it is stimulating to hear that Josh has been baking bread. Dinner with Margarita One time I went to dinner with my friend Margarita. She was the bartender at Casanova in the Mission on Valencia Street and across the street is this Mexican spot Puerto Alegre. They really had kinda Tex-Mex, it wasn't high on the list for Mexican places but they served a blended margarita in pitchers and when I was in my twenties, I would just wonder, how many pitchers did I drink? So I went over there with Margarita, I was in town from New York where I was living in Brooklyn at the time, I was visiting town. I looked up Margarita and we headed over to Puerto Allegre, and Margarita is a Mission bartender, she's been a bartender at many bars in the mission for a long time, like 20-something years, and she knew everybody. When we went to Puerto Allegre, she knew the waiter, and he said, "Oh hey Chad Robertson is over there you know those Tartine bread guys?" Actually he said, "You know those Tartine Bakery guys? But I knew them as Tartine Bread guys because they had a book about how to make bread that I would obsessively follow in my Brooklyn apartment. Chicken It was an amazing moment, Chad Robertson sitting across and Margarita there, and I had one of those moments in my life, where I totally chickened out. I didn't get up and say, "Oh my goodness Chad Robertson I have been baking your bread every day but I am quite an amateur and I bet you have so much to say, so interesting, I'm so glad to meet you," - no, I did none of those things, none of that. I stayed in the corner and I was like, "oh cool." Tell your hero It haunts me to this day. So it's good to say in this podcast. One of the things that's what's the matter with me is I regret not meeting Chad Robertson and the other Bakers from Tartine Bakery. It was 2008 at the time and this was very interesting stuff. Nothing happened, because I chickened out. Don't do that, is my advice. If your hero is sitting across from you, and somebody asks if you want to meet them, you should say, "Yes, I want to meet them right now." Tell them how much they mean to you and tell them they're your hero. I wish I had told Chad Robertson that.
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Overwhelmed In Episode 6 I get overwhelmed and hang up the headphones in the middle of the episode. On the one hand, it's a pretty terrible episode because of that, but on the other hand, it is good to know that I can feel bad and recover. I certainly don't feel this way anymore. It's hard to slur your words on the mic. Books / Can't do what your parents do A listener wrote in to correct me about some books that I touched on in the last episode and I took this opportunity to set the record straight. Tony Robbins wrote Awaken the Giant Within. Dale Carnegie wrote How To Win Friends and Influence People. Steven R. Covey wrote that 7 Habits of Highly Effective People. Good information My Mom had these books and that's why I avoided them. I was a childish child. They probably contain a lot of good information. All right? I feel all right. I don't have to go to the doctor. Sauce I made tomato sauce with 5 tomatoes that I grew. I have a hard time explaining how I made it. It gets hard for me to talk, hard to say "5 of them". I'm slurring my words. I get frustrated and hang up my headphones. I'm feeling pretty low, after all.
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JOHN HOPPIN: What's The Matter With Me? Episode six. Yeah. What's the matter with me? Episode six. Recap episode five. I had an MRI. I got a fever, and citrus plants are growing in my garden. I got a letter from a listener. I got some things wrong I got to address. Tony Robbins wrote a book called Awaken the Giant Within. Dale Carnegie, his book is called How To Win Friends and Influence People. And Steven R. Covey wrote a book called Seven Habits of Highly Effective People. My mom had those books I think. I haven't read them. I'm sure they're full of good information. But I can't recommend them because I haven't read them. So there. Happy to see this week on What's The Matter With Me. It's just life. I feel all right. I do not have to go to the doctor this week. Right now I'm making sauce. I boiled some tomatoes that I got on the vine, about five of them. Five of them. About five of them. And ... I did [inaudible 00:02:08].
Welcome back to the What's The Matter With Me? Podcast for Episode 5: Gallows Humor In this episode, I have bad reaction to an MRI, suffering fever and headaches for days. I come through it with the help of my wife. Recap Ep. 4 Recap - last episode, I tried to wrap my head around the idea of asking for and receiving help. A listener wrote in to tell me that asking for help increases effectiveness. We talked about the determination to continue despite the demoralizing nature of the therapy process. Bad MRI I had bad reaction to an MRI last week. I reacted to the contrast dye injection. I had a headache and fever for a couple days. It took a lot out of me. I was bedridden. Gallows humor If you ever see me flapping my arms and making fart noises, it means someone close to me has died. I am inappropriate. I've been feeling very down since the MRI. New Lemon Flavor In some sign of normalcy, I cooked Hoppin Hot Sauce, trying out a new Meyer lemon ingredient that my co-packer sent. The results are promising. Plants are growing in my garden - see you next time
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JOHN HOPPIN: What's The Matter With Me? Podcast, Episode five. Yeah. What's The Matter With Me,? episode five, back to business. Not really back to business. I'll get to that later. Last episode, let's recap. I talked about I wasn't going to quit doing this podcast no matter what. I admitted that I was a product of the eighties California life. I was born in… I'm a Californian, Okay? I said, "Dude." I say, "Dude." I admitted it, and we talked about therapy's hard. They make you do things that you can't really do. That's why it's therapy. It's demoralizing, but you've got to do it and it gets easier. That's the cool part about therapy. I got to admit something. I had a bad reaction to an MRI last week. It was really difficult. If you don't know MRI machines, it's a big giant thing that you get your head stuck into this hole with light coming out.
It's creepy. It's like a science fiction movie. You stick your head inside this giant machine and it scans your head, and actually they sucked me further into this machine and they scanned my spinal column, and that's even worse. It's like a punishing noise concert where you get stuffed in the amplifier. You can't move for 45 minutes, an hour and a half. You can Google "what does the MRI sound like," and you can get some idea. I've learned to fall asleep during this thing because I think my body shuts down to avoid the experience, and sometimes I snore too much and it messes up the scan, and they have to stop doing it and redo some parts, and it takes longer because I snore so much, because it's terrible. They inject me with contrast dye to see if there are any bleeding lesions in my brain and brainstem, and to tell whether I'm having disease activity or not, because if there's stuff happening live, that means I'm undergoing neurological degeneration.
The name of the game, I guess. I had the MRI on Wednesday, and I had a headache that night, and I started to get a fever above a hundred degrees. Got to 102 until Sunday morning, it broke. And it made all my symptoms worse. I fell down a lot, had to lay in bed all day, and I couldn't move, and I have a really painful zit on my ass. And I stressed out a lot. It was very stressful, and I gave myself a hemorrhoid even, which is rare, which is ironic, because I have a radio show and my DJ name is Hemroid the Leader, but I came up with that name when I was 14 and I didn't know a thing about a hemorrhoid.
And this is kind of joking, I guess. I get nervous. If you ever see me making fart noise and flapping my arms, you know somebody very close to me has died. I try and distract with stupid sense of humor to cover up how bad I'm feeling. And I couldn't really do anything this whole week. I couldn't turn. I was in bed, it was hard for me to sit up, turn over. It was hard, and it made my wife scared, and she cried by herself, man.
Welcome to Episode 4 of the What's The Matter With Me? Podcast In this episode, I continue to think about how to ask for help with the shower safety changes that I need, do some physical therapy, and finally pick up the phone and ask for help. Recap Ep. 3 Recap - last episode was about asking for help. It was hard to record because I didn't know that's what I needed to do before I began recording. I figured out while I was on talking about it that so many of my great friends and family would be happy to help, and that all I had to do was ask. 7 habits A listener, my only listener at that point, wrote in to say that accepting help builds bonds. It's one of the Seven Habits Of Highly Effective People. That's a famous book that I avoided because my Mom owned it. I'm grown up enough to admit that it's probably got a lot tof good information. Never quit I can't quit, even if I make bad episodes. Last episode, I said "Dude," revealing that I am a Californian from the 80s. It's OK with me to let you know that. "Woe is me," I meant. Therapy is hard They ask you to do the things that are hard for you. I'm putting off using it by working on the podcast. Phone call A good resolution to the last episode was that I called my stepfather to talk about what I needed in the shower, and that was enough to get things moving in the right direction.
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JOHN HOPPIN: Yeah!! Welcome back to the What's The Matter With Me? Program, podcast. I've made four episodes, so I feel like I can call it a program, a podcast. I could really call it anything I want. A message for peace to change the universe in seven minutes or so.
Last episode, episode three, we've talked about having trouble asking for help, receiving help and not wanting to be a pain, but also needing something and having to do it with my family and just having a hard time. And I've realized, on the mic, I could ask my friends for help and it'd be no problem. But the whole episode was really … I made it in a rush, so I had that on my back, while I was on the mic. But also, I had trouble … I had to really talk it out in the episode, that I needed to ask someone for help and having trouble doing that. So that's what we talked about.
I got an email. I only sent it to one person. I almost quit the podcast because episode three was so hard. Man, it's hard to ask for help. And then I had a hard time really enunciating it. I didn't know, when I started the podcast, that what I had to do was ask for help and communicate clearly about it. Anyway, I sent it to one person. She wrote me back and she said long ago, she had read How To Make Friends And Influence People. That's a famous book by Tony Robbins, and it says in there accepting help builds bonds.
And so if somebody says, "Hey, can I help you," you say, "Hey, yeah, you can help me." And when they do, you accept the help by you saying, "You know what? That was so helpful. Thank you for helping me." So it builds a kind of shared experience, I think. And I could see that. So thank you for hipping me to this super famous book that I think my mom had. So on principle, I could not bring myself to read it, because it was something that belonged to my parents. And everything they think is wrong. Right? At least … Anyway, I'll move on from that; my parents. I love them, and I am no longer an adolescent, and I think that How To Make Friends And Influence People probably has good information in it.
I almost quit the podcast last episode, and I need to figure out how to ask for help. But also when my podcast gets tough, I can't quit. I got to roll with the punches. I can make a bad episode. I can say a bad word. I can say a horrible thing. In fact, in the last episode I said, "Dude," to express a kind of internal angst that I had. I said, "Dude," and this existential thing came over me. "Dude," I said. And I really revealed that I am from California and I was raised in the '80s. Dude. I meant, woe is me. Okay?
Welcome to the What's The Matter With Me? Podcast Episode 3: Asking for Help Recap - last episode we talked about being in control of my emotions. Episode 3 revolves around asking for help to install shower handles so I can get in and out of the shower. The are a lot of complicated feelings that go with that. I need help, but I don’t want to ask, and I especially don't want to ask my Mom for help.
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JOHN HOPPIN: Back to Business, episode three. Last episode, we talked about stuff in the garden. I got a new kneeling bench. I told the story about falling. I talked about inability to control my emotions. On the weekend, and an update on that; I had some success by meditating, setting the meditation right off. That was my therapist's idea. He was like, "Meditate." I did it, and it helped. It helped me deal with the challenges I faced throughout the day, really.
More challenges is: mom. I don't know how your mom is; my mom is my mom. I'm trying to install handles in the upstairs bathroom. She has a house in Santa Rosa, and I'm trying to install handles in the upstairs bathroom, and a kind of leverage bar that will help me get in and out of the shower, in Santa Rosa, and it's kind of hard dealing with my mom; trying to ask for something and not wanting to be a pain, but needed some help and then having conflicting feelings about that, really. How do I feel? I got to ask my mom, "I need to install this stuff," and I can't even install it. Because I can't work a drill. So instead of just installing my own handles, I have to ask my mom, really, to ask my stepfather, my child's grandfather to install handles. The bar thing, luckily, is a suction thing. It works with tension. Tension, they call it. Not suction. It's probably easier.
So I have to ask my mom, "Mom, can you ask," my stepfather, "To install these handles." Anyway, asking your mom for help to install accessibility stuff, really, it's asking my stepfather to do it; it's kind of humiliating, dude. I just want to do it myself. All I have to do is put two small handles, and I can't work the screwdriver. Sucks.
But anyway, shout out to my stepfather, Dave, who probably is going to end up doing that, and will do that for me. He's got my back. So that is something to be so thankful for. You know what I mean? He'll do it. I need it. He'll help me out. Or, I'll have to ask one of my friends to do it, which would probably be better than my stepfather, but I'm embarrassed to do that. I'm embarrassed to ask my friends, and tell them, "Hey, I can't work a screwdriver." Because I could probably ask one of my friends and another. I could probably ask any of them to do it, but I'm to embarrassed.
Man, thinking about … I was trying to think about like, "Who could I ask to do it?" And then I realized I could ask almost any dude I know to give me a hand, and they would. Shoutouts to my bros. That is a good feeling, I guess.
So I have my radio show tomorrow. This guy, Ashwin Batish, is a sitar boogie guy. Google Ashwin Batish Bombay Boogie, and there's a radio Montreal, french radio interviewer, and he plays live, and it's rad. It's in 1987 in Montreal, I think. Check it out. I ordered a thing called a … But he's not playing on my show. Oh, sad. That's a sad turnaround on that. Ashwin Batish ends up not playing on my show, it got canceled yesterday because of a family emergency he has. So god bless, I wish him well.
I ordered a TheraBand FlexBar. It's a yellow spongy thing. And people use it for tennis elbow rehab. It helps you flex your arm and your hand in certain ways, and grip and turn. And it also massage. So my occupational therapist, Julie, who I kept calling Dr. Julie, I think, in the last couple of episodes, and she is not a doctor. And we always laugh about that, so I'm taking her down a peg right here on the air. Occupational therapist, Julie, not a doctor.
Although we discussed that maybe, I think she would be a great doctor.
Welcome to the What's The Matter With Me? Podcast Episode 2. In this episode, I struggle to control my emotions due to damage in my brain stem. What's The Matter With Me? is a podcast about multiple sclerosios, and many other things. Recap - should I be on disability? My philosophy. I said I can't - in violation of my philosophy, which is that I generally can do things. I can work. This podcast is about trying, and I'm not afraid to try and succeed and achieve. I believe that I can achieve regardless of the difficulty. I have a lot of brain stem disease activity, and it can make staying in control of my emotions difficult. I've been having difficulty with my morning routine on the weekends when my family are around. I have been meditating first thing in the morning, with some success. It provides some perspective that helps me get through the day.
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JOHN HOPPIN: What's The Matter With Me? Episode two. All right, all right, let's get down to it. It's What's The Matter With Me? Episode two. I'm John, and I have MS. I made this podcast to share what I'm going through. Let's recap the last episode, episode one. I sent it to like two people on email, and probably maybe they listened to it. Sometime you got to start small. So, what'd we talk about last time? I have a hot sauce business. We talked about that, my dream of employing disabled people, people who've been in the prison system, and veterans.
We talked about going on disability. I wasn't sure if I was going to go on disability or not. Spoiler, I talked to my doctor. She said, "You should definitely be on disability. You could still make money and work while you're on Medicaid." And after that, I was kind of sold. Then we talked about my philosophy about trying to do things, and that's what this podcast is about, so I think it'll be obvious.
Part of it, listening back, something stood out. I said that I can't, I used the word can't. And even worse, I said I can't work, which is so ridiculous. I have a company. I am on the radio on KFJC every Thursday, 10:00 a.m. to 2:00 p.m. And I do a couple of other things while I'm at it, and I'm a dad for two people. I can work. And whether or not I can work, I'm going to try and work. That's my philosophy.
So let's talk about working in the garden. I have a garden in the backyard, California native plants. I spend a lot of time back there. I have trouble sometimes. I've fallen in the garden and hurt myself. One time I fell into the side of the house, and I skinned my head, and I lost a bunch of hair. I mean, it was terrible. I'd basically head-butted the side of the house, man, and the house won. So that was tough.
Well, I've been working a lot, doing physical therapy and balance exercises, so I don't fall in the garden, and I always wear my brace. I have an ankle-foot orthotic brace that supports my ankle, helps me walk. My physical therapist said, "You always have to have that." And even I have a stick, like a cane, I use for balance, got to have that. I've started using that always when I go in the garden, and it's reduced… I was falling every day, and it's reduced my falls quite a lot.
Just today, I ordered some accessibility tools, we'll see how it works. It's kind of like a seat-stander-kneeler thing, which will help because I have to sometimes work on plants for a long time, and I need to sit near them. Maybe they'll help. That's cool to invest in the accessibility tools. Today I was trimming the rosebushes, and my hand comes into a fist like a claw, and it's hard to get a glove on. I have to really work hard, but I did it. And I trimmed my roses, and I'm happy to say my rosebushes, which my grandmother planted at this house are alive and well, so maybe Grandmother and Grandpa, Grandma and Grandpa, shout-outs.
I've had inability to control my emotions. I have a lot of lesions, brain lesions, in my brainstem. And my doctor said, "Sometimes you'll have the inability to control your emotions.
Trying What's The Matter With Me? is a podcast about Multiple Sclerosis and many other things. In this episode, it's the month of Mayhem at KFJC, and I go to in for an Occupational Therapist Visit, where I share about Hot Sauce R&D and my Workforce Vision. Droll It's the month of Mayhem at KFJC, and DJs do special programs all month long. Droll pre-empted my show to do a special about music in odd time signatures. Occupational Therapist Julie I went to Stanford to visit the occupational therapist. We talked about my business Hoppin Hot Sauce and R&D, recipe development and production bottlenecks. I told her about my vision of a workforce with disabled, vets, and ex-cons, working together in a supportive environment. I got on a tangent and had to flush the segment down the toilet. I start over again. I ask Julie if I should be on disability. She explains how it could help me, and my business.. I tell her the blanket analogy - that MS is a heavy blanket. I tell her about how I believe in trying, and that is why I made this podcast: to try.
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JOHN HOPPIN: What's the Matter With Me? Episode one. What is the matter with me? My name is John. I'm disabled. I'm developing my disability consciousness, so I made this podcast. I have multiple sclerosis, and I walk with a cane, and I do all this stuff. And so I made this podcast to say I have multiple sclerosis, check out my podcast. Man, what's the matter with me? They always say Ronald Reagan was a great speaker because he opened with a joke, and so I … I mean, I wish I had a joke to tell about that. Ronald Reagan, he was President twice.
What's the matter with me today? I'm going to go see Dr. Julie at Stanford. And after that at 7:30 is the radio station meeting, but I'm not going to be on the radio tomorrow because it is the month of mayhem, and my compatriot Droll is going to be on the air tomorrow from 10:00 am to 2:00 pm. Check it out at KFJC.org.
So anyway, Dr. Julie, she is an occupational therapist. We talk a lot about … I run a hot sauce business, and we talk … I'm trying to manufacture my hot sauce, so I can sell it all up and down the west coast. But right now, I just make it with my mom and very small batches. And I have a couple clients, and people like it; but I need to make a lot more of it in order to really make a go at it. I'm having trouble, because in the recipe, I use Meyer lemons, and those are kind of a special type of lemon. It has a certain taste, though. Makes the hot sauce taste good. So that's why I use it. And then there's also a certain type of chile, where I use a special kind. This guy imports it in Texas. I buy it from him. It's whole. In order to make a big batch, I need a big amount of ground powder.
What's the matter with me? So, episode one. We are getting to the harder things. I started this podcast to kind of share what I'm going through, which is that I have multiple sclerosis and it's brought me to be a disabled person. I've been singled out for the fact I'm disabled. I've had lots of people come up to me and say things to me, and some of them are great, and some of them aren't so great. And I have all kinds of experiences, same thing: some are great and some aren't so great. So I started this podcast to just share that.
And so today, I'm going to go see Dr. Julie at Stanford. She's an occupational therapist, and we'll talk about what I need to get out of life. What I want to ask her today is, should I be on disability? This is something certain people say I should be on … I'm disabled. I can't work. Some people say I shouldn't be on disability, because if I can avoid it … But the thing is, it's like working my wife to the bone. She has all the pressure. I need to come up with some cash.
I have this business, but like I just shared with you, it's in the R&D mode. It's going to take some time. At this point, it's just barely cracking four figures. It's going to … It needs to be up there.