Note: This account has a slightly different name than my legal name since I'm going to include some in depth life updates here and there are some people who I don't want to have that information.

If you’ve found this page and don’t know me, hi! I’m Gabriel. I used to be highly involved with Sunrise Movement and also have been/am involved with some nonprofit boards. And I’m also in the SCA if you’ve found this fundraiser from there, though I’m not as active as I’d like to be. Mostly because of all this disability stuff.

I've recently been slammed with expenses related to trying to keep myself functional enough to keep working, because my ME/CFS has gotten much worse over the past year. Most of the time I'm stuck in bed, though I can do more with the scooter I recently got sometimes, and even a little walking can lead to a crash where I'm barely able to stay awake for more than a few hours or even do things on the computer. I've been trying some new medications but I had to find online appointments to get them since my usual PCP was only having in person appointments which obviously aren't that accessible for me, so I wasn't able to use insurance.

Let's go through the FAQ

What is ME/CFS?

First I'm gonna drop a website that explains what it is in detail https://www.cdc.gov/me-cfs/about/index.html

But what you might be more curious about is what this looks like for me. So. If you knew me back when I was actively organizing, I would often walk several miles a day. Gladly and willingly. Love exploring cities. Well, that's not something I can do anymore. How much activity I've been able to do has steadily decreased. When I arrived in Philly, I was way less physically fucked up. I lived on the third floor of a building in Northeast Philly and would have to walk a half mile to go to the laundromat and wash my clothes but this was something I could do. Around September or October, my physical health began to get worse and I started having a lot of trouble with the stairs in my building. I cycled through several mobility aids before mostly settling on using a rollator and this February I moved to an apartment building in Center City Philly with an elevator. That didn’t stop me from getting worse, though. When I first arrived, I was able to walk a lot more, but in May I had a health crisis where my heart rate spiked for like 14 hours and I was much worse off after that and basically housebound again, and tired all the time. I would manage to go outside usually once a week at most. But I was still getting worse and began to struggle a lot with staying awake and able to work for my remote job, and ended up going from 40 hours a week to 32.

Last month, the hours long heart rate spike thing happened to me again, and for a week or so I had an especially bad crash and struggled to stay awake for longer than 2 hours at a time. I took a few random days off work and was considering trying to use FMLA leave but I got some atenolol with a telehealth appointment and that seemed to help. Though I crashed again last week so I’m also looking into other medication.

The problem is most medication for ME/CFS is somewhat experimental. The only ‘proven’ treatment is rest and pacing. I try to do that to the best of my ability but it’s hard when I’m living alone and working and have a lot of things I have to do. Obviously I don’t have any family support or many friends, especially not that live near me.

The US is an extremely fucked place to be a disabled person without much of a support system. If I lived in the EU, in many countries, I’d likely be considerably better off. I’d been trying to figure out how to move there with a student visa but I don’t know if I’ll be in a physical state to pull that off, and also arriving in an EU country obviously isn’t instant stability because it takes several years of legal residence to become a permanent resident and be able to access all the benefits for free.

Why aren't you on disability?

Would it be possible for you to survive on $800 a month (without a partner or family support)? How about surviving on $800 a month while also needing an accessible building and expensive mobility aids (insurance doesn't cover everything even if I were to try to use it, and it can be hard to get it to cover the things it's supposed to cover)? If the answer is no, then why are you expecting me to? If you think the answer is yes but aren't experiencing that and never have then shut up. This is also ignoring that approval can take years and multiple applications, and typically you have to be not working for that time.

What's this for exactly?

$600 - Mobility scooter

$240 - Appointments and medications