I AM MADELINE: Recent Episodes
I AM MADELINE
A performer (actress, singer), leader, mentor, and community volunteer with her hands on a number of projects, Madeline is a joy to know. She loves gardening and The Sound of Music. Her friends describe her as "effervescent."
She's one of more than 600,000 Canadians living with family of diseases twice as common as Multiple Sclerosis that many doctors don't even believe in, despite a strong correlation to viral infections. She and others face painful deterioration without more government supports, with still untold numbers of COVID-19 survivors joining them.
In this episode I talk about a recent eye infection that is very much living in the land of the song THERE WAS AN OLD LADY WHO SWALLOWED A FLY aka lack of supports creating a domino effect of problemsfor some reason the update to the Spotify for a podcasters app is not letting me add the photo I spoke of in the episode to this episode but you can see the photo of me doing my impression of a b-movie creature about to chase the villagers through the streets(AKA after the ER and before the antibiotics) on the latest update of the GoFundMe -the link is belowHere is that blurb I spoke about in the episode that my advocate helped me write that it makes sharing what's happening to me easier for you Madeline is still valiantly struggling for her life and needs your help to get her to live long enough for a currently confidential in-development advocacy initiative to launch, tentatively spring 2025. Ways to help:-Share the gofundme - https://www.gofundme.com/f/MadelinesMiracle-Donate to the gofundme-Let Liza or Madeline know of any media sources or social media advocates that would be willing to tell her situation's new developments:that neither a human rights tribunal or supreme court Charter Challenge is possible for lack of supports to people with disabilities and/or no category of coverage for her disease, myalgic encephalomyelitis (ME)/Long-Viral this information was given to Madeline by multiple human rights lawyers and the BC Ombudsperson who have told her that all these issues are considered political, thus meaning no recourse is available For your reference and verification of her situation, here is a link to the twitter thread that includes the article by Ricochet Media and can be shared on instagram and facebook: https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19
In this episode I speak about today's provincial constituency appointment and a genetics test that is processing. I was very grateful that friend helped me get it AKA paid for it and I'm hoping it will yield some results that will in turn yield some supports from within the British Columbia healthcare system. It's a hail Mary but at the time that the special came up on this full genome testing I was so close to running out of money that I thought if it doesn't come back before I run out of money at the very least maybe it's helps other people after I'm dead. It's so hard when things get that dark. But I'm still here! Thanks to GoFundMe donors and to some help from a friend this summer.The in the episode I talked about a myalgic encephalomyelitis death in the UK via starvation due to lack of medical intervention when her myalgic encephalomyelitis impeded her ability to digest food that went through a coroner's inquest. Maeve Boothby O’NeillAfter the coroner's inquest https://www.theguardian.com/uk-news/article/2024/aug/09/devon-woman-died-from-malnutrition-due-to-severe-me-coroner-concludes?utm_term=Autofeed&CMP=twt_gu&utm_medium&utm_source=Twitter#Echobox=1723221888Right after her deathhttps://www.theguardian.com/society/article/2024/aug/10/me-patients-maeve-boothby-o-neill-inquestI also speak about a YouTube episode I did entitled I'm afraid https://youtu.be/gdPfr-fCfGo?si=QHHZKMLJH81Kwm_ISince I currently run out of money the end of September Here is the GoFundMe link. If you're able to share it or the podcast link please do. Every little bit helps. Little things are big things!
A snapshot of the difficulties of disability bias, disease bias, gender bias in a day-to-day out in the world kind of a way. Plus a little about the ombudsman. I'll do a whole episode about that at some point. I'm not sure if you really be able to see it but it took a screenshot of a thank you letter I sent out to gfm donators. It really sums up that prospective I talk about in the podcast, the counterweight of gratitude and purpose. I'm not sure if you'll be able to see it well so maybe in the next GoFundMe update I'll post it there as wellGfmhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Yes the photo is the watermelon pattern on the big girl underpants I put on. Gfm linkhttps://gofund.me/cff39173Mentioned this episode-Not called the economist but economist written "from longcovid odds to lost IQ points, ongoing threats you don't know about"https://www.ineteconomics.org/perspectives/blog/from-long-covid-odds-to-lost-iq-points-ongoing-threats-you-dont-know-about--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Emotional resiliency conversation today. I speak about this social media post about the power of speaking up https://www.tumblr.com/niceven1/751685307525660672?source=share and this one about goodness https://www.tumblr.com/prettydumbloverboy/635405123372417024/when-you-sneeze-in-public-strangers-will-say?source=shareFor new listeners most recent article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyGfm https://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Here are links to some articles that have been done but have some overview of what's happening to me with obviously journalistic vetting plus I'll link the GoFundMe as that's where I've been doing written updates RICHOCHET article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyAlso the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19Citr ep April 6 2023https://www.citr.ca/radio/all-access-pass/episode/20230406/Petitionhttps://www.meaction.net/2022/03/01/you-can-still-help-madeline/https://dir.gov.bc.ca/gtds.cgi?show=Branch&organizationCode=HLTH&organizationalUnitCode=MHDabc Nov 2022Bloghttps://disabilityalliancebc.org/article-im-fighting-to-live-but/Pdf mag https://disabilityalliancebc.org/transitionfallwinter22/Tyee November 14 2022https://thetyee.ca/News/2022/11/14/Chronically-Ill-Dying-Poverty/Chatelainehttps://www.chatelaine.com/health/maid-assisted-death-poverty/Gfmhttps://gofund.me/cff39173Tyee articlehttps://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/Canada land podcasthttps://www.canadaland.com/madeline-medical-assistance-in-dying-priced-out-of-life/https://www.canadaland.com/podcast/723-the-high-cost-of-living/Updatehttps://www.canadaland.com/podcast/741-updates-on-pretendians-porn-and-being-priced-out-of-life/Millions missing simulcasthttps://twitter.com/millionspod/status/1450838974864445440?t=tiE3pZtRLB9LiRVXIg4u8g&s=19My Op-edhttps://quoimedia.com/canadians-with-disabilities-like-me-are-choosing-to-die-because-we-dont-have-the-financial-resources-to-live/--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Quickie update about the very dangerous cellulitis infection that's making my bad situation worse. Doing my best to keep my head up and keep my sense of humor afloat. Not sure if I should post a picture of it cuz it's really yucky so I don't know... Blech. Instead I'll post a picture of the blossoms that are helping me navigate the panic that's curling around the edges of my thoughts. I know exactly how bad infections can get in my broken immune system--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Mission impossible theme song in my head as I attempt to navigate all the layers of difficulty and complexity going on with more layers of difficulty and complexity getting added recently. So I thought it would do me good to talk about it and that you guys are probably wondering what's the what so here is an update. Here's the tweet thread of the ricochet article I mentioned in this episodehttps://twitter.com/SpichakSimon/status/1707785829433618864?t=QR1t1np3BwUNEKaARKpWvQ&s=19Also, doing my best to keep my head in as good a place as I can, and I adore spring so here's some spring especially for people who aren't experiencing it yet#canpoli #bcpoli #pwme #meaction #MECFS#myalgicE #disability #HumanRights #genderbias #pwd #healthcare #Canada #britishcolumbia--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
The title pretty much sums it up... It's My Disability Barbie-Heimer Rant!RICHOCHET article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyAlso the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19Gfmhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
In which I talk about how I navigated the holiday season and the advocacy and healthcare battles I'm facing in the next couple of months. I do also finally talk about the nightmare suite inspection and of course that they are coming back in March even though I did everything they asked me to do. Let's just say I have thoughts and feelings about that🤨🫤. I also talk about how that inspection has participated mass hair loss to the tune of half of my hair and counting. That's got my nurse practitioner worried, and me too! It's an indicator that my body is struggling so much that it's deprioritized energy to hair all over my body. This happened once before and precipitated my avalanche deterioration so I'm scaredFor anyone looking for the link to share here once again is the GoFundMe https://gofund.me/cff39173and the ricochet article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty along with the tweet thread that the journalist did so you can share it on Canadian social media https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19 plus the YouTube channel https://youtube.com/@IamMadelinePod?feature=shared as I do now have some episodes recently createdThe photo is of a Christmas present, a 3D printed miniature of the Moon that lights up. It makes me nerd girl happy🤓👩🏫. It was hard to take a picture of so I cradled it in my lap that's why it looks like a new moon--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Turned out to be surprisingly easy to convert the YouTube video to audio only so you could have it on both YouTube and the podcast platforms. I tried to play with the audio a little bit cuz my video recording app doesn't have quite as nice and audio as my usual audio recording app so I hope it's okayOnce again the photos that I talk about I put up on the latest GoFundMe update if you want to see them https://gofund.me/cff39173 but one of them I was able to put hereIn case you'd rather view it on YouTube here's that link once again: Holiday magic and Melancholy (on YouTube)https://youtu.be/sm0pgHfXrjY?feature=shared--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Tech support on this site is trying to figure out why the link generator is generating problematic links meaning that some people especially coming from social media are not able to play on the website. So I did today's episode on youtube. I don't know how to download the audio to put it on here as well so here's the YouTube link and hopefully tech will get things sorted ASAPhttps://youtu.be/sm0pgHfXrjY?feature=sharedI couldn't figure out how to add the photos I spoke about in the YouTube podcast episode so I posted them on a recent update on the GoFundMe page https://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
My birthday is coming up and I'm having all kinds of feelings about it so I thought I would share. The photo is from a story I talk about in the episode about my 10th birthdayFor those who don't know yet I did make three YouTube videos if you want to share them, and of course there is still the ricochet article that you can share as well as the GoFundMe link. See belowChannel Linkhttps://youtube.com/@IamMadelinePod?feature=sharedFighting to live but...(Madeline origin story)https://youtu.be/bUJJKnqV5S4?feature=sharedCrush part 2 https://youtu.be/K-XjZwFL6KY?feature=sharedBegging for my life on the internet https://youtu.be/B5P6CFteyiU?feature=sharedGfmhttps://gofund.me/cff39173RICHOCHET article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyAlso the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I have much to update you on but I will do that at another time as I've overdone on textual communication this week. I wanted to let you know that I made three YouTube videos that I've set to premiere at 6:00, 6:20, and 6:35 pst tonight respectively. Then they'll set themselves up as regular public episodes. They are varying length as a tried to make them shorter but with such a complex situation that's super hard. Plus I'm super sick after two rather horrific suite inspections, which I'll tell you more about later, so it's really hard to pull my brain together to be brief. But I wanted to try to make best use of December because I don't see anyone donating to a GoFundMe in January. I added all the hashtags I could think of and did my best with the description and adding links in the description.I ended up having to get a new phone and a friend helped me with that and since it's a much better phone I was able to do videos now, but the light was a little off because I'm so sick that I can't handle strong light for very long so I tried my best to adjust the color afterwards. They're not amazing but maybe that works in my favor that they're not glossy. I guess we'll see. I will try to make more in the coming weeks energy permittingI don't expect you guys to watch them for the premiere but if you could share the episodes after the premiere when they're public with your networks and any social media that would be amazingChannel Linkhttps://youtube.com/@IamMadelinePod?feature=sharedSetting it up as a premiere it means I can't give you the specific links to those videos right this second as it seems to automatically set it to private, at least I don't think so. So if these links don't work then let me know and I will share those later in case it's too much of a pain to dig them upFighting to live but...(Madeline origin story)https://youtu.be/bUJJKnqV5S4?feature=sharedCrush part 2 https://youtu.be/K-XjZwFL6KY?feature=sharedBegging for my life on the internet https://youtu.be/B5P6CFteyiU?feature=shared#MyalgicEncephalomyelitis #COVID19 #projectforawesome #longcovid #healthcare #nerdfighters #britishcolumbia #canpoli #disabilityadvocate #MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disabilityinclusion #disabilitysupport #pwd #pwdassistance #derb #immunedeficiency #Christmasmagic #Christmas #christmasmiracle #philanthropy #Canada #Canadian #Vancouver #genderbias #medicalbias #healthcare #MedicalMeToo #humanrights #HUMANRIGHTSTRIBUNAL #humanrightsforall #mydisabledlifeisworthy#epsteinbarrvirus #PostViral --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I think the title sums it up. I talk about some good things that have happened and how I'm navigating the week leading up to the next fire suite t inspection with a little more resiliency. In the last episode I really just let it all hang out about how hard it was but also then after I got to say what's happening talk to myself back to a place of a more useful perspectiveI also talk about the fact that the new replacement phone for the old dying phone opens an opportunity to maybe do some YouTube videos, still protecting my identity but at least you get to see my eyes. I still have to pull that energy together and it will still have to be after the next fire sweet inspection which I hope is the last. I need to be able to focus back on the advocacy because I am still hand to mouth with funds for treatmentshttps://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Today I talk not just about the pain and exhaustion and pushing through to get ready for the second fire inspection, but individual and collective ableism creating a situation that sends the message, in no uncertain terms, whether overt or covert, my country wants me dead. But I also talk about how for most people it's really a lack of understanding. And how each person working to understand means we begin to address that larger collective ableism infecting bureaucracies medicine journalism politics and the larger societyRICHOCHET article, (please share💗)https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyAnd here is a tweet thread by the journalist who wrote the Ricochet article so that you can share it on Facebook or Instagram as Canadian news links are not permitted there stillListen to the most recent episode of my podcast: Crush https://anchor.fm/i-am-madeline/episodes/Crush-e2c5131Gfmhttps://gofund.me/cff39173 #ableism #disability #pwme #MECFS #myalgicencephalomyelitis #chronicillness #chronicpain #fybromyalgia #postviral #longcovid #paxlovid #hbot #hyperbaric #canpoli #bcpoli #Canada --- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
In this episode I talk about today's suite inspection, the unrealistic ableist expectations and timelines (plus assumptions of supports that don't exist within the system and definitely not for my disease; myalgic encephalomyelitis) that have been put on me by my landlords and the fire inspector. Also, with the best of intentions I know, but still ableist interactions with an official who came to support me today, plus some good things! (Yes Halloween related hence the picture)But ultimately I need more time to fight to stay alive but also to fight for supports for people like me, so here once again is the link to the Ricochet article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty and the gfm https://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
So much happening to me, non of it easy or fun. Pro bono clinic says no, suite inspection colliding with med appts, hyperbaric chamber improvements, intravenous issues, long shot of tiktok, & am I officially longcovid on top of postviral EBV?Ricochet https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyGfmhttps://gofund.me/cff39173Gfm--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I was going to title this episode why does the universe hate me, because today it was one hard thing after the other. But towards the end I got to thinking about how wonderful things giving was. But I don't understand why the difficult things to keep coming at me hard and fast and I still can't get basic supportsFyi you can see the Rosemary and sunflowers that I grew in the photo in the middle of the table. I'm not sure you can see the jiggling tower of cranberryIn case you haven't read the recent articleRICHOCHET article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyGfmhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I thought I would talk through post-exertion symptom exacerbation #pese while it was happening. I know that it's very hard for somebody who hasn't experienced it to really understand what it's like. The problem is I feel so fatigue cognitively impaired that I'm not sure how clear I was. But maybe that all into itself is an explanation. Also talk about a young person I met casually diagnosed with long covid without any instruction on The perils of overdoing and how you can permanently disable yourself. I do currently have enough money to make it to the end of next week but I'm really struggling with that daily and weekly fight to survive. Having pushed myself to try to clean because I'm really scared about my tenancy being at risk and the death sentence that anyone attempting to be force me into a care home would represent, it's really emotionally crushing me. I'm still aimed at getting to thanksgiving, and hoping that help bouys my spirit but it will make the post exertion symptom exacerbation fall off a cliff. And I don't currently have the resources to get enough treatments to get it to restabilize. And that doesn't begin to address having enough money to have enough treatments to have enough energy to clean my apartment. And around and around I go on the Merry-Go-Round of never having enough supports either on my disease or PWD assistance in generalRICHOCHET article https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyGfmhttps://gofund.me/cff39173Email address, BUT not the one for the e-transfer cuz again I haven't been able to figure out how to set that up myself, but the way to reach me to give you the transfer info that liza set up when she set up the GoFundMe iammadelinepod@gmail.com--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
It's been about 5 hours since the Ricochet articles been out. Trying unsuccessfully not to get my hopes up. Super burnt from doing my best to share the article on social media and with my social networks and FriendsThe richochet article is out. Here's the link. https://ricochet.media/en/3991/Canada-MAID-policy-death-by-povertyAlso the journalist did a tweet thread with highlights from the article if that's something that you're interested on sharing Facebook and Instagram won't let you share a news links from Canada https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19Money is beyond tight. I'm going to end up using October grocery money on treatments next week. I am struggling with emotional Wellness from the constant fight just stay alive and the isolation so I need to know that I can be well enough to make it to my friends Thanksgiving because catching covid from Life Labs a few weeks ago really knocked me over plus suite inspection concerns are causing me to push myself to clean which is capsizing me furtherGfm as I put the Ricochet Link in the update there because Facebook and Instagram are seemed to allow that to post as wellhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
A big welcome to ricochet readers finding this podcast due to the article written by Simon Spichak ( https://ricochet.media/en/3991/Canada-MAID-policy-death-by-poverty )! Fyi this was recorded on Augusta 31st(+ additions on September 8th and 9th), ie before previous episodes so don't be surprised, but I waited to published it until the RICHOCHET article came out has publications so far have preferred that and I wanted to be respectful as I'm so grateful for them telling my story. So basically we're a little out of sequence and I wanted to explain why. Also WHY I recorded this episode before the ricochet article came out because I didn't know when it would come out and I couldn't be sure what brain power I'd have then. The perils of a mitochondrial disorder on minimal supports; unpredictable energy for even simply tasks.Episode title talks about some of the ways that I'm employing the coping strategies I talked about in the previous episodes. Also mini update on latest hyperbaric chamber new/supplements. PLUS Sept 8 Immunologist visit 'feels' right after the appointment and then middle of the night dark night of the soul it precipitates. Pic is of a winter holiday Volunteer project from a couple of years ago as it's getting ready for distribution. The room smelled like a forest. It was wonderfulGofundme link for those looking for it https://gofund.me/cff39173I misspoke vision thingis a song AND album name. It's a kind of dark song so I wasn't going to share it but after the middle of the night dark thoughts maybe it's appropriate to https://youtube.com/playlist?list=OLAK5uy_mPZRUA0DBWhgunX03jvJ5q_zLR19c4y7g&si=aH3rOQDDevk-1duVHere's the link in the tweet thread the journalist did with highlights from the article (FB and Instagram block news links now) https://twitter.com/SpichakSimon/status/1707785829433618864?t=RowAITYe-W17QLiZRGTNMQ&s=19And in case you hate Twitter now, I also put the link in the update to the GoFundMe because social media is seeming to allow that to share.--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Looking at my bank account trying to figure out how to afford treatments next week trying to figure out how to stay alive trying to figure out how to pull the energy together to clean my apartment so I don't get evicted WITHOUT ENOUGH TREATMENTS trying to figure out figure out figure out too many things to figure out. this is too difficultGfmhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
After #paxlovid but before getting back on the intravenous I'm in a nether world of pre-existing symptom worsening--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
COVID burnt(sooooo extra dangerously tired) +paxlovid unexpected good results on pre-existing postviral syndrome symptoms--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
The sun is shining through my window it's almost 9:00 a.m., but my thoughts and emotions are in a dark place.--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
An episode in which I curse, a lot. You were warnedTheme song of this episode https://youtu.be/Vqbk9cDX0l0?si=1hUdr5UqJQ2mlEQ7--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
The mucus that I'm producing at the base of my throat to the covet turned out to be so thick that when I stood up quickly to go to the door to get a delivery of supplies from a friend it's covered my airway like a carton and it couldn't breathe. Made it out to the hallway where my friend pounded my back to open the airway. She insisted I go to the emergency room, but they didn't have any sort of violation for the part of the airway. 6 hours and risking some new infection and no actual help. Oh well. Wasted money I don't have on the taxi home and I hope i don't get charged for the ambulance.Plus my landlord s are trying to do a sweet inspection, but I seem to have gotten their liaison to hear me out that with an immune deficiency I am infectious much longer than a healthy person with covid. That's how it's played out with all of my infections that are contagiousGfmhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I tested positive for covid Saturday the 16th but fever and chills started the night before. First I thought it was just the mitochondrial issue cuz I pushed so far outside my energy envelope, but now it's clear that it's from a Life Labs worker who was very audibly ill and only wearing a surgical mask. This is a quick update while I still have a voice cuz I seem to be leaning into laryngitis. Worried about that I'll be missing intravenous this week so that's never good for already existing infections or the pre-existing post viral syndrome diseases especially the myalgic encephalomyelitis. Also missing physiotherapy so pain is likely to go nuclear. And I'm spending money I don't have on things to support me through covid. Very worried about a paxlovid resurgence, and I talk more about that in this mini updateGfmhttps://gofund.me/cff39173--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I'm having quite the interesting 24 hours and not in a good way. Minimal supports has meant I've had a bad reaction to one of my treatments, actually both of my treatments today simply because minimum health supports always means maximum complicating issues. I am very not okay and I'm very worried about running out of emotional resiliency to keep fightingGfmhttps://gofund.me/cff39173Fyi this was published Thurs but that got messed up somehow and I can figure out how to change the publish date to the proper one. Le sigh--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
An update talking about an in-person neurological exam I had today. Telehealth with my primary care allopath a few weeks ago had concerned her enough to bring me in for an in-person appointment to assess some neurological issues I hadn't really been talking about, and the exam made it clear there were more I wasn't even aware I was having.
Also as I run out of gofundme money for treatments next weds here's the link if you're able to share it or donate yourself https://gofund.me/cff39173
Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Where I attempt to puzzle out explaining some of my coping strategies. Also ombudsman update plus an article that includes me should be coming out soon update.I talk about MS and ME briefly in this ep so here are some links about that:viral origins of myalgic encephalomyelitis, some of the history of its abdication, it's relationships to MS and AIDS and particularly to Epstein-Barr which was the virus that got mehttps://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1011523#ppat.1011523.ref025And this one draws distinct parallels between MS and ME and shows the seriousness and deadly nature of myalgic encephalomyelitis-Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics | BMC Medicine | Full Texthttps://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205 More info on MS and Epstein-BarrClonally expanded B cells in multiple sclerosis bind EBV EBNA1 and GlialCAMhttps://www.nature.com/articles/s41586-022-04432-7Gfm for those who want it https://gofund.me/cff39173(Also bear with me guys as I try to find the perfect location for the microphone. I have to play with levels post recording when it turned out it was too close so I hope that's okay. I don't know have the energy or brain power to rerecord. Le sigh. It's hard to have the sound quality at the level that I want it to be while hanging off a cliff by a branch like a cartoon animal trying to be a magical Ted talk to drs, politicians, bureaucrats +now ombudsman, etc while also trying to navigate scarcity and illness. So I appreciate your forbearance💗. )--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
I finally get around to talking about hyperbaric chamber treatments 11 through 14. And I talk about why it took so long to do so. Lots of stuff going on, all of it difficult, hard upon already hard. But still some interesting HB results in spite of all the obstacles and challenges. Plus I update you on some new oral supplements. I am speaking to the Ombudsman today, and I will update you about that when I have more info--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Today is very much the epitome of the adage the straw that breaks the camel's back. I thought I'll say what's happening while it's happening because this is exactly what it's like to be one of them is that millionsmissing. This is what happens when you don't have even have a MSP category of coverage for your disease, myalgic encephalomyelitis, and you end up on PWD assistance. I had a pretty hardcore meltdown after landlord's representative started making noises about my messy apartment so I'm guessing my tenancy is at risk again simply because I have never been able to have the basic doctor prescribed housekeeping myalgic encephalomyelitis needs. It's just too much. Everything is just too much. Everybody expects me to be always brave and strong and I just can't do it. No one could do it. I've hit rock bottom with a crushing thud
Gofundme link for those looking for it https://gofund.me/cff39173
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Hyperbaric Chambers 9 and 10 + calls with the British Columbia Ombudsman office which are a very interesting possibility....
Gfm https://gofund.me/cff39173
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What is bounty and how do we as humans use it to navigate difficulty. In this podcast episode I begin to have a conversation about scarcity and bounty especially in regards to persons with disability and even more especially persons with disability in poverty
So you have the link handy if you want it, here's the GoFundMe https://gofund.me/cff39173
The image is bouquets I made a few years ago for one of the community projects
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I talk about hyperbaric chamber treatments 7 and 8 along with the impacts of volunteering and having to deal with a host of day-to-day advocacy and self-care issues which all impact hyperbaric efficacy as I really would do best power resting but I don't have the supports that would afford me that medical necessity.
Gfm link for anyone looking for it https://gofund.me/cff39173
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Good news /bad news, been a roller coaster few days. Plus some surprising improvements that can only be due to the hyperbaric especially in the face of the music Fest volunteering that I did.
The photo is the view I had lying down, cuz that was pretty much my festival weekend as I was surrounded by gorgeous music and kind people
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It looks like I've brain fog miscounted hour many HB so far, and also forgot to document one treatment. Also tired brain used the wrong mic, so I'm sorry it's not recorded as clear as i like, LE SIGH. Also talking about the impacts of doing community building volunteering on my health and on the efficacy of the recent Hyperbaric treatments. Aka big setback. Much better emotionally because of that purpose and connection through my volunteering, though much worse physically because of it, and it has impeded the efficacy of the Hbot. That said post hyperbaric chamber number 4 big increase in energy & baby step beginnings of edema reduction Here's the mast cell activation link I spoke about https://www.mastattack.org/2017/08/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-51/ And here's the gofundme link if you're looking for it https://gofund.me/cff39173
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This episode I try to pull my thoughts together to speak to parents and caregivers of person's with post viral diseases especially myalgic encephalomyelitis. This was inspired by Andrea Haefele of www.mombehindthelabel.com who very kindly agreed to share what's happening to me with her online community. Her focus(if my beleaguered brain is understanding correctly) is as a parent with a autistic child who also has developmental and physical health challenges, and so does advocacy in that space as a mum, inspired me to make this episode. I was planning, for quite some time, to have this conversation directly to caregivers and parents, but I guess my tired brain kept forgetting, so this seems like the perfect time
Some links I talk about in the episode: Article I wrote for the disability Alliance of BC https://disabilityalliancebc.org/article-im-fighting-to-live-but/
Gender bias in research https://pubmed.ncbi.nlm.nih.gov/33232627/
This is the UK journalist whose child died of ME after being sent home by the doctors who told her she was fine https://www.thetimes.co.uk/article/my-daughter-couldnt-be-saved-but-theres-hope-for-other-me-patients-j7lbgg68k
There are a lot of longcovid/ME articles out there outside of canada, but perhaps this ATLANTIC article sums things up https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
And since I run out of the GoFundMe money that's been keeping me alive in a few weeks, here's that link https://gofund.me/cff39173
Since this episode is to parents, I thought a childhood picture might be appropriate. This is long before I became health obstacled with post viral diseases at age 12
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Where I talk about the hyperbaric chamber I did Wednesday, #3, on June 26th and how that's going and how the emotional impacts of running out of gofundme money are affecting efficacy of treatment and my emotional well being which all on its own affects my health
Gfm if you could share, that would be so helpful https://gofund.me/cff39173
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The second hard shell hyperbaric chamber treatment plus some concerns about developing situational depression due to running out of gfm money mid July and trying to decrease treatments in very worrisome ways. https://gofund.me/cff39173
Also new law https://www.chrc-ccdp.gc.ca/en/resources/historic-law-will-help-realize-the-rights-people-disabilities but with little to no postviral MSP coverage in Canada esp BC that alone doesn't save my life. I think that's part of the depression I seem to be slipping into...
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I'm going to document each hyperbaric treatment and any symptoms whether they be decreased or exacerbated and exactly what's going on. Partly as general information, but mostly in the hopes that I will eventually be turned into a case study that could be useful not just to me but to others. Tired brain I forgot the PSI and a couple of other things, so hang on for that as it's second segment of this episode
Right now I have enough money until mid July, so I won't be able to carry on with this for very long. And I'm going to have to do it 21 week, one the next to come out when we know one treatment a week of the intravenous is it near enough, and then I'll have to drop down to one and stop it all together. If you're able to donate or share the GoFundMe that would be amazing https://gofund.me/cff39173 Not sure of hashtags work on Spotify podcast, but I thought maybe I should give it a go this episode
myalgicencephalomyelitis #postviral incl #longcovid #pwme #Canada #BritishColumbia #disability #fibromyalgia #pots #immunodeficiency
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An inside view on my insomnia, especially when I decrease treatments. Definitely a part of the suffering Olympics
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The suffering olympics, inspired by a comment on the GoFundMe, which you can find here https://gofund.me/cff39173 Elizabeth King comment I've got moderate to mild M.E, and I haven't been tested by the system because of the privilege of having a family who can afford to support me. You should have that kind of support too. You shouldn't have to put in a perfect performance at the suffering Olympics in order to get compassion, care, and respect.
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An update about what's happening, how much time I have AKA how much GoFundMe money and how I can stretch it and how I'm trying to stretch it which is hugely problematic, treatment tweaks, infection management, and next episode I will do on the suffering Olympics, hopefully next week if I can wrangle some energy together
The flower picture you see is me continuing to focus on beauty as a way to manage the panic I'm feeling. Although it's amplifying now as I talk about in the episode with the onset of nightmares
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And by titling this ep, "Doctors, Politicians, Bureaucrats; Lend me your ears", I am indeed borrowing from Shakespeare's Julius Caesar as a way to start a direct but gentle and open conversation about post viral diseases, especially myalgic encephalomyelitis, and especially the state of PWD assistance in Canada, particularly British Columbia. It is created as a resource for each of those groups to share with the other as well as for patient populations share to those institutions and individuals within those institutions to increase understanding and start creating communication Bridges that will create solutions. So hopefully a much happier ending then Shakespeare's Julius caesar!!!
Some of the articles and links I reference:
Gender bias in research https://pubmed.ncbi.nlm.nih.gov/33232627/
the Atlantic- long covid/me https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/
Forbes LONGCOVID. Long covid has over 200 symptoms and leaves one in five unable to work https://www.forbes.com/sites/roberthart/2021/07/15/long-covid-has-over-200-symptoms-and-leaves-1-in-5-unable-to-work-study-finds/?sh=1f11766e5eb2
Fortune magazine long covid/covid death rates May 2023 https://fortune.com/well/2023/05/23/covid-deaths-one-person-every-four-minutes-vaccination-rates/
Mayo clinic article ME https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
Assessing the impact of one million COVID-19 deaths in America: economic and life expectancy losses https://www.nature.com/articles/s41598-023-30077-1
Scientific American long covid https://www.scientificamerican.com/article/we-need-an-operation-warp-speed-for-long-covid/
Scientific American tsunami of disability is coming due to covid https://www.scientificamerican.com/article/a-tsunami-of-disability-is-coming-as-a-result-of-lsquo-long-covid-rsquo/
Gfm https://gofund.me/cff39173
I am Madeline pod Twitter account https://twitter.com/IamMADELINEpod?t=EmaVURgn51YZJ739IBbW3g&s=09
ME International Consensus Criteria 2011 created by medical experts. https://t.co/TXyJSMdImp Protect BC https://protectbc.ca/public-healt-scandal-failure-to-warn/
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I think the title sums it up. I pretty much put it all on the line about how I'm feeling about running out of money for treatments and supports at the end of MayThe picture is from easter where I followed the host of the games party's instructions and wore my Easter finest ;P. I think it kind of sums up the laugh part. How I survive on whimsy and compartmentalizing.--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Where I decide to talk through my feelings after listening to the university of British Columbia Community radio station episode of the accessibility collective on citr that I participated in. How can anyone know the terrible pressure if I don't share what it's like.--- Send in a voice message: https://podcasters.spotify.com/pod/show/i-am-madeline/message
Seeming okay is not the same as being okay. I do my best to explain what's the what with that and the harm it can do--- Send in a voice message: https://anchor.fm/i-am-madeline/message
Here is the guided meditation with harp with the focus of boundaries. Most of your questions will likely be answered in the introduction sections before this episode. But please reach out in the GoFundMe comments, on Twitter @iammadelinepod for the comments of this anchor podcast And yes, if you like this and you would like future guided meditations with different focuses I would be happy to do so if I am able to. As I've mentioned before I am sharing this meditation with the hopes that it might have a positive impact on the GoFundMe which I am currently using for life-saving supports. And now as I am having to do a human rights case that will take 5 years to see through to the end it's become clear that I will need the funds to stay alive that long. So this meditation is both a thank you to current supporters of the GoFundMe the podcast and the twitter, but also a possible avenue for people who weren't sure about donating to the GoFundMe because they didn't understand my disease or my treatments, to donate based on my talent. A big thanks to you all and I hope you enjoy this meditationHarp Scott Hughes producer Kent Shaw Gfmhttps://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet--- Send in a voice message: https://anchor.fm/i-am-madeline/message
I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet--- Send in a voice message: https://anchor.fm/i-am-madeline/message
I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet--- Send in a voice message: https://anchor.fm/i-am-madeline/message
I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet--- Send in a voice message: https://anchor.fm/i-am-madeline/message
I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet--- Send in a voice message: https://anchor.fm/i-am-madeline/message
I'm breaking the introduction into segments in case listeners want to go back and go over any particular section more easily. One of the reasons I am posting it is a thanks to my supporters. Another is that with the reality of facing five years to see a human rights case through to fruition I'll need the GoFundMe to expand a lot. So some people might be willing to share to it based on my talent versus my health obstacled situation. https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet--- Send in a voice message: https://anchor.fm/i-am-madeline/message
Feeling a bit like I can't win for losing. The meditation plus intro are roadblocked by unexpected life happenings driven by ableism and nuttiness. It's collapsing me and likely will mean I don't have enough money until May from a medical / financial stance. Doing my best to stay strong and focus on the blossoms coming. Here's a picture of the first one--- Send in a voice message: https://anchor.fm/i-am-madeline/message
My process of coming to teach meditation and my experience of the 10 years I taught, and a little of the whys and wherefores leading up to the next two episodes which will include an intro and an actual guided meditation--- Send in a voice message: https://anchor.fm/i-am-madeline/message
A little good news update. And then the rest is an exploration of the emotional and psychological harm of the post viral disease abdication (especially myalgic encephalomyelitis) inherent in the current allopathic MSP covered medical systems and the extreme developmental harm it has on children and young adults with these diseases--- Send in a voice message: https://anchor.fm/i-am-madeline/message
The upshot of my meeting with my mla about getting me proper supports and keeping me alive, probably through a case study, and a suggestion of a stopgap in the meantime. For non-canadians, MLA stands for member of legislative assembly which is my provincial representative in British Columbia. It's the first time I've used the anchor app to record, so I don't think I'll do it again. There is a slight scratch here and there. Sorry about that.--- Send in a voice message: https://anchor.fm/i-am-madeline/message
Where I think the gfm money is going to stretch until march because I was told a chunk of backdated GST money was coming in on January 5th, and that's not how it's playing out. I'm scared. I did have a relatively nice holiday season All things considered. And I talk more about that. Also about a conversation on January 9th with my mla's office! But it's looking like a day late and a dollar short unless something magical happens--- Send in a voice message: https://anchor.fm/i-am-madeline/message
It's my birthday week. I'm having all kinds of thoughts and feelings. Plus the latest on conversations with the government. Plus here is the link to the blog post of the article I mentioned https://disabilityalliancebc.org/article-im-fighting-to-live-but/ GFM link where I'm doing updates etc https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer&utm_campaign=p_lico+share-sheet --- Send in a voice message: https://anchor.fm/i-am-madeline/message
A dig down on my current treatments, as well as my experience of the difficulties of accessing them. Also, an update, the article I mentioned did get a different title, and can be found on Page 6 and 7 https://disabilityalliancebc.org/transitionfallwinter22/ . I also mentioned chatelaine article https://www.chatelaine.com/health/maid-assisted-death-poverty/ & the op-ed I wrote about a year ago https://ipolitics.ca/2021/11/15/the-disabled-are-choosing-to-die-because-they-cant-afford-to-live/ .
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(in the vein of lions and tigers and bears oh my)
Oct 11 2022, update
Really exhausted and cognitively impaired from advocation plus limiting treatments as I tried to
save money but I did my best with this update. Sadly the free recording app I used glitched a
few times, but I think the general sense is there. Far from perfect but I don't have the brain
power to try to record it again and I'm sure many of you are wondering what's the what with me,
so it felt long overdue to update.
GoFundMe which I would be beyond grateful if you could share
https://www.gofundme.com/f/MadelinesMiracle?utm_medium=copy_link&utm_source=customer
&utm_campaign=p_lico+share-sheet
Petition that I mention. It got over 1800 signatures and was sent to the BC ministries of HEALTH & FINANCE
https://www.meaction.net/2022/03/01/you-can-still-help-madeline/
Chatelaine article I also mention that came out this summer
https://www.chatelaine.com/health/maid-assisted-death-poverty
If you want to ask CTV, GLOBAL, CBC, GLOBE AND MAIL, TORONTO STAR, VANCOUVER STAR and any other mainstream news orgs in canada to cover me here's the link to the start of the podcast to share with them if you want https://anchor.fm/i-am-madeline/episodes/Ep--1---How-do-you-solve-a-problem-e110jks and the twitter account for this podcast https://twitter.com/IamMADELINEpod?t=jfCSZ8BZMJOPWRjCCO5SCg&s=09
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This is the final instalment of The #MillionsMissing Podcast testimony from Madeline. Natalie, Diana, Rosalynde and Whitney have also shared their own, unique lived experiences of post-viral syndrome and Myalgic Encephalomyelitis with Millions Missing and each of their personal testimonies is as powerful as can be imagined. Visit the show's website or find this podcast on your favourite provider. https://anchor.fm/millions-missing-podcast All of the pictures and titles featured alongside these episodes have been provided by Madeline. We are incredibly grateful for the efforts of the Millions Missing team and Madeline for the irreplaceable energy and passion they have put into this testimony and project. Picture: "As I come closer and closer to death, which is forcing me to go public about my situation, somehow it seems appropriate that the first time I appeared in a newspaper I was playing in puddles in the rain and caught the eye of a local journalist. I loved storms, although this life and death storm I could do without. Finding this old photo felt like an odd kind of bookending. Although I'm really really hoping not an actual ending." -Madeline
UPDATE DEC 18, 2021
PETITION TO ASK THE BRITISH COLUMBIA CANADA MINISTER OF HEALTH TO CREATE A STOPGAP OF COVERAGE FOR MADELINE BEFORE SHE RUNS OUT OF GOFUNDME AND DEBT WINDOW MONEY https://act.meaction.net/page/36743/petition/1
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Madeline talks more about her quest for solutions Picture: Madeline in her red feather boa, as she tells more of the Red feather bra saga
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In Part 5 of her testimony Madeline says knowing all she knows about the potential for even more severe illness and debilitation, she is scared and still without supports.
Picture: One of Madeline's favourite times of year is Halloween.
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In Part 4 of her testimony to The #MissingMillions Podcast Madeline discusses how important it has been for her to engage with society and community through volunteering. Chronic illness can lead to severe social isolation, much of which could be prevented by lifting people out of poverty and providing more robust medical supports.
Picture: "Like this honey bee and flower, interconnectedness and purpose are essential to my survival." -Madeline
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Piles of paperwork, appointments, fees, circular direction from government ministries, a lack of meaningful coverage and little to no help navigating complex coverage where it's available. Living with post viral syndrome is hard enough, but without extended third-party health insurance it can be impossible.
Picture: Already facing red tape and bureaucracy in Canadian healthcare and public coverage, Madeline performs in a play in university.
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People with post-viral syndromes, Long Haul COVID patients, and people with #ME often describe a debilitating "brain-fog." Madeline gives us a taste of what it's like to navigate the symptoms and mechanics of mitochondrial disease while living as an "energetic person trapped in a tired person's body."
Photo: Madeline in her high school production of CAST. "The play that helped me realize that performing was my calling."
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Madeline continues her testimony on the #MillionsMissing podcast, discussing how the interactions and impacts of multiple systemic illnesses involved with post-viral syndrome are amplified by poverty and bias. But she reiterates, even after 40 years with #ME, she is still not defined by her disease.
Photo: This photo was taken along with the first one just as her acting career seemed to be blossoming, Madeline says this image reminds her of what her illness stole from her, that she wasn't always "just the poor little sick girl."
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Madeline had recently shared her story, entirely in her own words and without coaching from producers or hosts. We are honoured to share these episodes of The #MillionsMissing with our listeners.
MillionsMissing podcast podcast is "dedicated to providing a platform for the uninterrupted testimonies of people suffering from chronic illness; it's a podcast created solely for the purpose of ensuring that these often silenced voices are heard, not only to help further the advocacy of the chronically ill, but also to provide an unparalleled, highly personal account of what it's actually like to live with chronic illness. If you would like to share your own story and testimony, email us at millionsmissingpodcast@gmail.com or DM us on Twitter @millionspod"
UPDATE DEC 18, 2021
PETITION TO ASK THE BRITISH COLUMBIA CANADA MINISTER OF HEALTH TO CREATE A STOPGAP OF COVERAGE FOR MADELINE BEFORE SHE RUNS OUT OF GOFUNDME AND DEBT WINDOW MONEY https://act.meaction.net/page/36743/petition/1
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Every day Madeline finds three things to be grateful for, three things she is proud to have accomplished, and three things that validate her emotions. On August 14th, 2021, she recorded an update for our listeners and this is an addendum to that update that she hopes will leave you inspired and grateful.
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Madeline has been working on recording her story, in her own words, for a shared episode with the Missing Millions Podcast but her plummeting energy, increasing pain, and never-ending bureaucracy have been slowing the process. In this episode she shares an honest update with you, dear listeners, because she hasn't stopped fighting for her life or the lives of countless other invisible, silenced, stigmatized people with myalgic encephalomyelitis.
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"If they would rather die, they had better do it, and decrease the surplus population." said the world's most famous miser, Ebenezer Scrooge, of those in poverty, before his Christmas Eve enlightenment. Now, in 2021, the Canadian government has introduced a basic income for people with disabilities. It won't be law until it's likely far too late for Madeline and others with chronic illness or disability, barely surviving on government income well below the poverty line.
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We're a small team, so when things get tough it's important we don't overdo it. Thanks for staying with us over our impromptu break: Episode 5 is coming soon.
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Madeline faces an impossible situation, and she’s not the only one. Poverty is forcing people into assisted death as Canada opens its medically assisted death laws to more people without ensuring the alternatives are in place for vulnerable people.
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Madeline isn't just fighting a debilitating disease. She's up against a system that legislates her into poverty and denies access to the only treatment that works.
Transcripts: IamMadeline.com
Twitter: @IamMADELINEpod
Donate: Madeline's GoFundMe
Bonus episodes: Patreon
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Madeline’s disease has long been dismissed as “hysteria” a broad and harmful quasi-medical designation that was listed in the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders in 1968 and removed in 1980. Millions of ME sufferers have been dismissed with this so-called diagnosis, which is drawn from a lack of evidence and extreme bias.
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Last week, I AM MADELINE host Ash Kelly was a guest on Joseph Planta's podcast, The Commentary. She told Joe about this podcast, why Madeline’s story needs to be heard, and how new ideas might be changing journalism for the better.
Learn more about Joe's show at TheCommentary.ca
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Madeline has a magnetic personality and she's a prolific volunteer who is well known in her community. She's also scheduled to die in just a few weeks. Madeline lives with a debilitating but treatable disease that is so stigmatized many doctors still don't believe it's real. Now millions more are likely to join her, as some long-haul covid sufferers appear to have the same illness.
Madeline's story is woven into the history of infectious disease, post-viral illnesses, and other chronic diseases that have marginalized and impoverished so many.
Co-produced by Kelvin Gawley and Ash Kelly
Hosted by Ash Kelly
Music by Lee Rosevere
https://leerosevere.bandcamp.com/
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Myalgic Encephalomyelitis does not have to be a deadly disease. As hundreds of thousands of people with so-called "Long Haul COVID-19" are being diagnosed with the illness, people like Madeline have been fighting for treatment for decades. She is facing a ticking clock, as her final few weeks of being able to pay for minimal care, approach. Without treatment she fears a full collapse, she has chosen a medically assisted death. Madeline says she and others with treatable diseases being forced into choosing a medically induced death over a rapid and painful decline into more severe disability.
Thank you to Lee Rosevere for the music in this trailer and episodes.
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