Did you have to dig deep to find some Disability Pride Month feels too?
Am I a Bad Disabled Person if I would yeet ME/CFS in a heartbeat, given the opportunity? (Don't know, don't care, 0/5, would not recommend post-viral illness.) AND YET...
This disease is a real slog.
I miss a good struggle, for love or money. (Mostly love.)
It’s fun to fail up.
This isn’t that. Taking it right in the brainstem means struggling to digest, to regulate my heartbeat or my blood sugar or my immune response or my balance or my thirst or…
There’s more to it than that, but healthy people see sick folks as a whiny already. Even “higher functioning” sickies side-eye us. I know because I was one. I hiked and skiied and traveled through a fuckton of chronic pain and IBS, so what’s your excuse? Huh?
I have been paying penance for that for six years, five months, and eleven days.
July is Disability Pride Month. Disabled was a word that took me a minute to apply to myself, six years ago. Mow, pride’s another. I AM proud of the grit and grace I’ve grown to survive. Proud to roll with some tough and soft, kind and boundaried sickie souls. Proud of my people for rising to this.
But I’m sure as shit not proud of a medical system that robbed me blind while making me worse. I’m not proud that the research granted to my patient cohort—a cohort that swelled TEN TIMES in the pandy—is so negligible we have nothing to offer the newbies. Many of them, kids.
Our government and our medical system can solve post-viral illness—ahem, HIV. It is a choice and a systemic failing that they have neglected ME/CFS.
So no, I’m not “proud” of my disability, per se.
This disability? Is a choice and a failing.
It’s just not my choice, or my failing.
But it is my life, and it is my responsibility. I grieve, multiple times a day, because getting sick isn’t just losing your health. It’s losing the memories you wanted to make, the capacity you counted on having, even just a week ago, sometimes.
The big losses hurt. The little losses get me more, somehow. But what’s big or small, when the losses seep into everything—hair and teeth, snacks and gravel, wrinkled parents and friends’ babies turning to teens while you are paused, and how.
Replacing everything lost is nonstop survival strategy. Counting the dwindling minutes I can stand, rationing tiny energy units, a diet of just 12 ingredients, scheming ways to force an existence incompatible with practical reality to endure.
This disease—this disability—is constant precarity. Cyclic grief. Endurance as exhausting as the disease itself.
And…
I waffled on whether I wanted to silver lining this ending. Can we acknowledge for a moment the profound suck of this, without having to put a bow on it?
But yeah, I do. Because here’s how it ALSO is. You can’t NOT be proud of the sheer spirit of disabled people. Bro brahs still weld e-scooters to their wheelchairs (and I am taking notes, btw). Bedridden b*tches still snark so hard on the text thread I spit out my tea giggling. Strangers resurrect their old buried careers to help each other win disability case battles, get in with the good doctor, find that one paper, or get a mobility aid.
Nobody milks any fleeting moment of joy quite like a disabled person. Nobody looks suffering right back in its ugly mouth with the same, “yeah, bring it” tired glare, either.
You also can’t help be proud of the people who love us, and try so hard to make things work for us. If you have driven me three blocks, agreed to a camp chair park hang instead of the fun concert, brought an air-mattress on a mini-walk in case I had to lie down (okay that only happened once but it was AWESOME and yes I did), then I know who you are and you know who you are, and for Disability Pride Month, you should be proud of yourself for supporting a disabled person in one of the only ways that actually matters—getting right in there with us.
Disability is a wide net, and it touches a lot of different people who certainly have different feelings than mine. I don’t stand for the whole disabled population, or even the whole ME/CFS population.
But I’m here. One little MEep part.
And it took me a minute, but yep, I do find pride in that.
Nice writing. Good thoughts. Thank you.
Feeling this hard. Thanks for expressing this complicated experience so well. xoxox, one of the Bedridden Bitches.