I spent Saturday feeling kind of crappy, tired, low energy, even took a nap. I don't nap.
Then comes nighttime, when I got all nauseated (and promptly started eating antiemetics like candy) and lightheaded and dizzy and spaced out and fell over when I stood up.
"Fuck. Fuck this all to hell", I say.
See, I have adrenal insufficiency, and I was showing signs of adrenal crisis, which can be fatal. My pulse bottomed out at 38 or so when I was at the ER, so it's good that I went, but it sucks.
I can't forget, not even a little, that I have a marginalized brain. It's all around me. I don't understand people, they talk to me like I can't understand anything because of how I speak, the autism tragedy items are everywhere. Because of epilepsy, I am not allowed to drive, there are seizure-causing strobe lights on bikes and police cars and parking garages and a German restaurant (no, really, I have NO IDEA why either). The message comes through loud and clear: this world is not made for brains like mine, the world thinks brains like mine are inferior, and if my brain wants even a little consideration I am going to need to fight for it. Accessibility policies rarely address that brains like mine exist and need accommodations as well-there is no escaping that I have a marginalized brain, and I'm pretty used to that.
But I can forget I have a marginalized body. For the most part, it can do anything I ask it to do-I can dance, I can climb, I can do flips, I can navigate my environment with relative grace and ease. In my base state, I don't have a marginalized body at all. The world is set up for people with my physical abilities to do their thing efficiently.
But then I throw up, or I break a bone, or in the case of Saturday, a black cat crosses my path. Then I remember that my body isn't something I can use as nonchalantly as other people can use theirs. You can't tell, I go weeks at a time without being conscious of it at all, but this strong and coordinated body I inhabit is fragile indeed. When the shit hits the fan, it goes critical in a big way.
Since I don't think about it much-I take replacement steroid along with my anticonvulsants and I carry an emergency injection kit-the whole thing freaked me out. Generally speaking, adrenal insufficiency impacts the day to day running of my life not a bit. For me, at least, it is a rare and uncomplicated metabolic disease. Take pills every day, don't throw up, don't get significantly injured, all will be well.
Then it slapped me in the face out of nowhere and I remembered that it is a big thing. And the ER people made it pretty clear that they didn't find this sudden failure of homeostasis (which is basically what an adrenal crisis IS) to matter a whole lot-I got the steroid replacement about 3-4 hours after I told them that I felt like I do after I throw up, 2-3 hours after my pulse hit 38, hours and hours after I told them that it was all wrong.
And it wasn't cool at all. In terms of ER treatment, there was probably a bit of intersectionality-my chart says autism, so they didn't realize my inability to make even a little sense was, like, a thing. And I'm a woman, so of course if I am not actively being mauled by a bear it's not necessarily really a real thing. I heard that attitude before, actually, right when I was diagnosed with adrenal insufficiency-and then they saw that I'd been functioning on 1/4 normal cortisol levels and were revealed to be misogynist shitfaces.
If it had been out of nowhere seizures, I have adjusted to those being the occasional addition to my life, but no-precipitant adrenal crisis really scared me. I already restrict some of what I do because of seizures, I'm more cautious of going places alone then I'd like to be because of seizures and autism related communication issues--I was ok with AI being something I don't acknowledge much. After this one, though, I'm going to be wary for a while and it sucks!
No comments:
Post a Comment