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 me

I 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/2002061384209867072

Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mae64ynmms2l

It 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 things

I don't have the brain power to read this last op-ed edit, so I'll be interested hearing what you think

I 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 wishes

Marcia 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/2002061384209867072

Blue sky https://bsky.app/profile/madelinenerd.bsky.social/post/3mae64ynmms2l

It 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 things

I don't have the brain power to read this last op-ed edit, so I'll be interested hearing what you think

I 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 wishes

Marcia 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_petition

and 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 children

https://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 strategies

also 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_petition

I 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/6d981312

petition(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/6d981312

petition 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_petition

For 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=80ed2a920b

Also 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_petition

And here's the Canary UK article I mentioned

https://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 problematic

here'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=false

And 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=share

And here's the GoFundMe I mentioned in the podcast

https://gofund.me/6d981312

and 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=share

Also #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/6d981312

Petition 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_petition

photo 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

the link to the Atlantic article in the previous episode expired so here's a new link that lets you read the article 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=share

Petition

https://bit.ly/Marcia_petition

gfm https://gofund.me/6d981312

here's what I read from at the end of the episode

https://www.tumblr.com/jellogram/792428018098487296/its-honestly-insane-how-much-your-life-can-change?source=share

It's honestly insane how much your life can change with so little extra money. When people talk about "money buying happiness" they usually talk about medical bills and travel and stuff, but I'm talking single digit amounts here. Five dollars can buy you a snack, an espresso, a pack of bandaids, some ibuprofen, bus fare, or even some new plastic dishes. All of those things can dramatically change how your day goes.

The main thing I learned by being broke and now having minimal-but-consistent income is that those little items can absolutely make or break your mental health. The difference between having zero dollars to spare versus having $5 to spare is astronomical.

The Atlantic article just came out https://www.theatlantic.com/magazine/archive/2025/09/canada-euthanasia-demand-maid-policy/683562/?gift=yKNFI6bZtyj8clr3yQtLYEDZGa59P6EdVull-NTK1io

If you can't read it please let me know and I will see about finding a way for you to be able to read it

As I mentioned in this podcast I'm going to include links to The petition where we accept worldwide signatures, the BC budget presentation and the GoFundMe where I do regular updates and also of course it's keeping me alive

Petition

https://bit.ly/Marcia_petition

bc budget presentation June 17th at 1:50 p.m.

My copy

text

https://docs.google.com/document/d/1CLWh9vDEkw19LwB5JMlFmQyRRl6hXNiZOc-13cSRJfI/edit?usp=drivesdk

audio

https://open.spotify.com/show/0oNLwzI1qZvvZ51bau1aNi

government transcript draft https://docs.google.com/forms/d/e/1FAIpQLScnNcxR_BKBQT4jqXOsoqNW_do9E6rvXTDxH1CiP0G5HHCzLw/viewform?usp=sf_link and https://www.leg.bc.ca/hansard-content/Committees/43rd1st/fgs/20250617am-Finance-Victoria-Blues.htm

The Canary UK did an article in December when the petition came out if you want more of a textual synopsis December 2024

https://x.com/TheCanaryUK/status/1870202754200940686?t=kEDZ1y5rkulir29j8zdlEg&s=19

https://www.thecanary.co/global/world-analysis/2024/12/20/marcia-mecfs-canada/

GoFundMe

https://gofund.me/6d981312

On social media

Twitter @iammadelinepod

Facebook and Instagram and blue sky @madelinenerdfighter

Not sure why I'm surprised, but same neighbour tried to do it to me again today as I was exiting my apt. I was so tired, my body was in such pain. What the heck. When are we going to start accessibility training so people understand that vomiting #disability prejudice is not ok

Here's the YouTube video I did of the first time it happened https://youtu.be/lHaw1OOujNY?si=HejtFuNZGxN4AE7x

#MyalgicEncephalomyelitis #healthcare #canpoli #disability #MyalgicE #pwME #MECFS #fibromyalgia #MEAction #Canada #Vancouver #genderbias #medicalbias #healthcare #humanrights #mcas #mcs #disautonomia

Where I talk about the fact I have a total thing about banjos, the recent folk festival that I went to and that I've been volunteering for for about 30 years. Also the difficulties and trying to find a balance between the things that Bouy my spirit and the things that need to get done but are also to Herculean and are destroying me

The photo on this episode is the vantage from my chair at South stage on Sunday at the folk festival as people are starting to set themselves up before the musicians come on. That's where that amazing morning concert happens. I thought it would be nice for you to see that beautiful canopy of leaves that creates this amazing sound as the music reflects off it.

I talk about the petition so here it is again. remember worldwide signatures are 100% encouraged and welcomed and we are hoping to get to 2000 signatures before we presented to the premier. https://bit.ly/Marcia_petition

those book about my BC budget presentation. I'm not sure when it goes up but I did it June 17th at 1:50 p.m. and here's the transcript of my section, just not the q&A. I'll supposed it up the audio so if you scroll you can find it in an earlier episode https://docs.google.com/document/d/1CLWh9vDEkw19LwB5JMlFmQyRRl6hXNiZOc-13cSRJfI/edit?usp=drivesdk

and the GoFundMe for those who are able to donate and I hope you will be able to share. Time, having enough time to keep fighting, that's what the GoFundMe represents. that and hope

https://gofund.me/6d981312

where I talk about upcoming heat of 30° c and I still do not have a response from the crisis division of this ministry of social development of poverty reduction about a new air conditioner. And one that will not just handle the air situation more effectively which is a dual hose/inverter is on sale. 500 bucks and they normally cost way more like $800 or more. https://www.bestbuy.ca/en-ca/product/danby-dual-hose-portable-air-conditioner-with-wi-fi-14000-btu-sacc-12000-btu-white/17539003

The kindness of listeners who have helped me do the research to figure out what will be best not just for the heat but for the air quality issues as the downstairs duck work is still venting into mine and I still can't get them to do the second scoping even though they already paid for it. I talk more about it although I do talk very disjointed today. I'm not okay