I AM MADELINE

we're a talk about the many different kinds of difficult things I'm attempting to deal with, advocacy next steps, advocacy current obstacles, and health supports obstacles. hence the title squish squashedand the episode icon is spring blossoms! cuz I adore spring. So that helps with my head space a bit. But I'm also worried about despair. currently going to run out of GoFundMe money the beginning of April. which is terrifying. it never gets less terrifying the whole month to month GoFundMe thing

It's Valentine's Day(you'll see I'm wearing red Because I'm a big believer and celebrating whenever possible. It does a brain good!), but unfortunately disability bias issues do not take a holiday nor does the Herculean effort of staying alive. But I'm working to do that are arm floaties not the least of which is wearing red

petition presentation live stream link https://www.youtube.com/live/PN6-ewFs-00?si=UBsftv5p3FLnMc7malthough the petition has been presented we are leaving the document and its additional resources up in case anybody wants to use it as a template and also for a reference. I know everything I'm proposing saves the system massive amounts of money and problem solves disability and long viral disease deficitshttps://bit.ly/Marcia_petitionhttps://www.thecanary.co/opinion/2025/12/19/me-void/Also so you have it because it's my lived experience, here's my recent op-ed

Petition presentation is Wednesday the 21st 11:00 to 11:30 a.m. Pacific standard Time. The zoom room will be open from 10:45 to 11:45. I do explain how that will work in this episode as well as what it feels like in this lead up to the in-person presentation of the petition that I've been working to get signatures on for a year.BTW we are still accepting signatures until late Tuesday night. We are currently at 1358 signatures and would very much like to get up to 1500 or higher before we presentHere is the zoom virtual attendance of the petition next Wed Jan 21st and the petition https://bit.ly/Marcia_petition & my Dec op-ed https://www.thecanary.co/opinion/2025/12/19/me-void/Here is the CTV article I mention about the United Nations https://www.ctvnews.ca/health/article/united-nations-report-says-canada-should-repeal-maid-for-people-with-non-terminal-illness/Here are social media links to the infographic that I posted Facebook https://www.facebook.com/share/p/14QVw39pnTT/X Blue sky Instagram https://www.instagram.com/p/DTlPzmdAeaX/?igsh=Nzkzd3V1ZHZkNW0wTumblr https://www.tumblr.com/iammadelinepod/805925264282550272/join-our-cloud-hd-video-meeting?source=shareYouTubehttps://youtube.com/shorts/Bf1ZAWrSyN4?si=dH73WvXaGAtk74x3#MyalgicEncephalomyelitis #myalgicE #disability #chronicillness #chronicpain

episode done at a hospital treatment. kind of a recording in the wild lol Links I mentioned Petition https://bit.ly/Marcia_petitionCanary opted December 19th 2025 https://www.thecanary.co/opinion/2025/12/19/me-void/Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis https://www.mdpi.com/1648-9144/57/9/885

photo is of first blossoms that I saw yesterday! That usually lifts my spirits Because I love spring. But it's the wee hours in the morning where pensive and melancholy seem to be emotions that I'm experiencing. So in this episode I've had to puzzle out why I am feeling this way. I think it's partly because all that's ahead of me right now is fighting without anything to look forward to Because I don't know how far the current GoFundMe money gets me into January. And it's unfortunate that that impeded my ability to enjoy my friends this evening. But hand to mouth like this tends to even blot out the good things sometimes. And that's frustrating and it seems to be amplifying my melancholy. often focusing on things like an upcoming MP constituency appointment can lift me with that purpose. But that's not working right now. ultimately I think I just feel alone even when with people because of what's happening to meI talk about the op-ed https://www.thecanary.co/opinion/2025/12/19/me-void/and Petition https://bit.ly/Marcia_petition

My op-ed is out! https://www.thecanary.co/opinion/2025/12/19/me-void/ (Linkbio)If you could share the op-ed everywhere you can that would be amazing. Posts I've made for easy sharing Insta https://www.instagram.com/p/DSc6ciGiQv0/?igsh=MXFnemtrd3Y3eGx6eA==Fb https://www.facebook.com/share/p/1AKdjYyQ72/Twitter https://x.com/i/status/2002061384209867072Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mae64ynmms2lIt getting published so close to Christmas means having it shared by people like you is extra extra important for I'm not sure how much of an impact it has on the petition and the GoFundMe(which currently runs out mid-January which means I would have to stop life maintaining supports. that's kind of eating my brain). For anyone you are sending it to who doesn't know about my situation, the op-ed does link to 2 articles that this publication wrote last December about my situation which gives a pretty good sense of what's the what. and of course That also means I've been verified six ways to Sunday about these thingsI don't have the brain power to read this last op-ed edit, so I'll be interested hearing what you thinkI got to have a flyby encounter with David Eby yesterday, who's my MLA, and once again ask for a constituency appointment which I've been begging for for the better part of almost 2 years now. Cuz that's the only way I get proper supports and can stop begging for my life on the internet🤞I did tell him about the petition hoping that might speed up the constituency appointment process https://bit.ly/Marcia_petition . Also I did my best in a crowded loud environment to express that the petition encapsulates easy solutions. I didn't have the rain power to say how much they save the system money both directly in people like me not slamming into the ministry of Health but also indirectly by the The 36%-37% ( https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofaf533/8244677?login=false )of the population getting long covid having correct instruction and support so they don't unnecessarily become disabled get removed from the tax base. Oh well. Hopefully I'll get a chance to say it in person at a constituency appointment. 🤞Warmest holiday wishesMarcia AKA Madeline#MyalgicE #meaction #christmas #longcovid #christmastime

My op-ed is out! https://www.thecanary.co/opinion/2025/12/19/me-void/ (Linkbio)If you could share the op-ed everywhere you can that would be amazing. Posts I've made for easy sharing Insta https://www.instagram.com/p/DSc6ciGiQv0/?igsh=MXFnemtrd3Y3eGx6eA==Fb https://www.facebook.com/share/p/1AKdjYyQ72/Twitter https://x.com/i/status/2002061384209867072Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mae64ynmms2lIt getting published so close to Christmas means having it shared by people like you is extra extra important for I'm not sure how much of an impact it has on the petition and the GoFundMe(which currently runs out mid-January which means I would have to stop life maintaining supports. that's kind of eating my brain). For anyone you are sending it to who doesn't know about my situation, the op-ed does link to 2 articles that this publication wrote last December about my situation which gives a pretty good sense of what's the what. and of course That also means I've been verified six ways to Sunday about these thingsI don't have the brain power to read this last op-ed edit, so I'll be interested hearing what you thinkI got to have a flyby encounter with David Eby yesterday, who's my MLA, and once again ask for a constituency appointment which I've been begging for for the better part of almost 2 years now. Cuz that's the only way I get proper supports and can stop begging for my life on the internet🤞I did tell him about the petition hoping that might speed up the constituency appointment process https://bit.ly/Marcia_petition . Also I did my best in a crowded loud environment to express that the petition encapsulates easy solutions. I didn't have the rain power to say how much they save the system money both directly in people like me not slamming into the ministry of Health but also indirectly by the The 36%-37% ( https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofaf533/8244677?login=false )of the population getting long covid having correct instruction and support so they don't unnecessarily become disabled get removed from the tax base. Oh well. Hopefully I'll get a chance to say it in person out of constituency appointment. Warmest holiday wishesMarcia AKA Madeline#MyalgicE #meaction #christmas #longcovid #christmastime

where I talk about pushing my energy envelope so that I can have some good experiences in the face of all the hardship I'm going through. yeah it's making my pain and exhaustion dramatically worse but it's really nice feeling to to have a sense of that accomplishment and to be able to use my talents to do something that helps other people feel good in the face of the difficulties they're going through

where I talk about The fine art of distraction, a particularly bad episode of pain, the perils of not having housekeeping supports, fear around running out of the GoFundMe money that I use for treatments, and the holiday season and my birthday which are both highly emotional times I talk about the petition https://bit.ly/Marcia_petitionand the GoFundMe https://gofund.me/6d981312

where I talk about an op-ed I'm in the final edit stages (Yes I'll post it the minute it's up in a new episode) And I talk about Sinterklaas, celebration of the name day of St Nicholas, December 6th. He comes on the eve, December 5th, to bring presents to childrenhttps://www.dutchready.com/blog/traditions-in-the-netherlands-sinterklaas/ And here's the video I talked about *Marcia's Very Beary Folkfest Adventures* https://youtu.be/DBxf-osYOYI?si=tO6sLbhiAU04TK1O and the other video I mentioned that was made by the youth volunteers of the khatsalano days festival with the teddy bear project https://youtu.be/g_ZSBiPy4ZY?si=QPdMn8lNZHO2oyd4 note: The photo is from the internet and is not copyright to me. here's where I found it https://3.bp.blogspot.com/-ms27JJEPgf4/UKpQ8OUgbYI/AAAAAAAAKq4/DYx2ckFOzvY/s1600/ANP-21230297-475x735.jpg

to borrow part of a quote and replace discretion with preparation, hence preparation is the better part of valor when it comes to myalgic encephalomyelitis deterioration. So today I talk about some of those strategies and the pros and cons of the energy spent trying to figure them out at at the best price to factor in running out of money which is the whole reason I have to do the strategiesalso where I update you on what's been going on since the last couple of episodes I melted down.I mentioned the petition so here's the link https://bit.ly/Marcia_petitionI also mentioned a recent GoFundMe update so here's that link https://gofund.me/6d981312

I got in after doing part one and still had a lot to say and still have some pretty high level feelings about they're just being far too many one thing after the other levels of difficulty that keep coming at me

Life is just kicking my rear with one thing after the other. I'm overcapacity and despair is definitely lapping around the edges

The photo is a small part of what I wore on Thursday pumpkin carving which I talk about along with my pumpkin prowl & a day of the Dead party. community connection fun and whimsy to help me navigate running out of money in Dec & now sharing petition in Jan, attempting to spread my story throughout Canada, and indeed the world, so that both I & people like me can have proper supports and the system can save oceans of money. recent gfm update with list of difficulties https://gofund.me/6d981312petition(still hoping to get to 2000 from current 1325) https://bit.ly/Marcia_petition

I talk about this Sundance award-winning documentary a few episodes ago and it is now on CBC's Independent lens this coming Monday at 9:59 Pacific standard Time So check your listings and time zones so you can PVR it. I don't know if it'll be on CBC gym but you might want to check

where I talk about how I use whimsy as a survival tactic. I'll talk more specifically about what actually went down on a Halloween and the day of the Dead. But here I talk about how I've been using it as a survival to especially in light of what's going on for me right now and I talk about what's going on for me right now Links I mention recent GoFundMe update that has a breakdown of the difficulties https://gofund.me/6d981312petition which we are hoping to bring to the premier's office in December although not early December anymore apparently which has got me a bit crestfallen and scared https://bit.ly/Marcia_petitionFor some reason this latest update of Spotify for podcasters is only letting me show you a sliver of the photo of my hat. anyway hopefully it will behave itself at a later date

sorry I got the name wrong. I think I was saying in the episode afterlife but it's actually life after and here's the link https://mailchi.mp/multitudefilms/life-after-us-gathr?e=80ed2a920bAlso here's the petition that I mentioned in the podcast. If you haven't signed and or shared it yet then I would be so grateful https://bit.ly/Marcia_petitionAnd here's the Canary UK article I mentionedhttps://www.thecanary.co/global/world-analysis/2024/12/20/marcia-mecfs-canada/

well I start talking about losing the help from a friend with laundry that I've had the past year or two but that support not existing anywhere even though it's medically prescribed along with housekeeping I think is about a larger conversation around power. So I talk about my views on power does he try to understand how the heck do I build a communication bridge to forms a power That exists within government and medicine and indeed often in journalism that I consider to be leaky and problematichere's that world study on long covid rates that I mentioned in the episode https://academic.oup.com/ofid/advance-article/doi/10.1093/ofid/ofaf533/8244677?login=falseAnd because I mentioned the Atlantic article here is an updated link so you can still read it https://www.theatlantic.com/magazine/archive/2025/09/canada-euthanasia-demand-maid-policy/683562/?gift=yKNFI6bZtyj8clr3yQtLYCSwFBjNIwPzg10Axz0GrTA&utm_source=copy-link&utm_medium=social&utm_campaign=shareAnd here's the GoFundMe I mentioned in the podcast https://gofund.me/6d981312and also the petition I mention. worldwide signatures welcome!https://bit.ly/Marcia_petition

The Atlantic article link expired so here's a new one for you to be able to read (Or listen cuz it has a audio version at the top) https://www.theatlantic.com/magazine/archive/2025/09/canada-euthanasia-demand-maid-policy/683562/?gift=yKNFI6bZtyj8clr3yQtLYCSwFBjNIwPzg10Axz0GrTA&utm_source=copy-link&utm_medium=social&utm_campaign=shareAlso #GoFundMe link has that Atlantic link at the top in the latest update In case you want to share as you can't post news articles on Facebook or Instagram https://gofund.me/6d981312Petition link. And again worldwide signature is welcome. We are pushing for that last 700 to get us up to 2,000 so if you could sign and share that will be amazing https://bit.ly/Marcia_petitionphoto is of a bouquet I did for flower power a few weeks back. That's a big hope thing for me. with all of the difficult things coming at me, Not well enough to make any this week.#MyalgicEncephalomyelitis #projectforawesome #longcovid #healthcare #britishcolumbia #canpoli #disabilityadvocate #MyalgicE #pwME #MECFS #pots #fibromyalgia #MEAction #disabilityinclusion #disabilitysupport #pwd #pwdassistance #derb #immunedeficiency #philanthropy #Canada #Canadian #Vancouver #genderbias #medicalbias #healthcare #humanrights#epsteinbarrvirus #PostViral