Since I couldn't livetweet it

I had every intention of livetweeting as much as I could of my surgery yesterday (Laparoscopy, for endometriosis). Partly for the humor-I'm funny when drugged-and partly to help me remember things, since most people don't remember much before or after.

So I'm gunna put it here instead, so that I can remember what I remember.

My roommate's mom came & got me just before 8:00AM-8:30 check in, 10:00am surgery. They asked me a bunch of questions that I'd answered before, kept asking how I was (hungry, thirsty, & terrified), kept making sure I was the Neurodivergent K who's chart they had, stuff like that.

The gown was, like, recyclable. Seriously. It was purple and made of this paper/cotton mix. It plugged in & inflated these plastic bag things with hot air...it looked like I had absolutely comically GIGANTIC pecs. Unfortunately it sounded like a vacuum-I would have liked it warmer but it was so loud.

So after I got all gownified the official presurgical nurses came in to do my IV and make sure the incision site was as clean as could be & to take my necklace & bracelet from me. Noooo. The IV lady was really good...most people need a few tries, but it was in before I noticed. They were asking the same standard questions, I was answering the same way I always would (so, most people read me as a bit quirky or obnoxious), and they kept telling me I was adorable. Weird, but better than the people who are dealing with my anesthetized ass thinking I'm a jerk, right?

It took a long time for the anesthesiologist to come in. Like, a LONG TIME. Apparently my chart had walked away. But he told me exactly what they were going to give me & explained how they were going to prevent anesthesia awareness (a rare phenomenon that really really freaks me out). Telling me that it's rare isn't helpful, so are a lot of things that I've experienced, but telling me that even those rare cases mostly occur in emergency surgery when they can't fully anesthetize because blood pressure is already too low-that helped.

Then MY doctor came in & asked how I was. Terrified was apparently a healthy answer. I appreciated my anxiety not being written off-so often it's seen as silly. Also, she had on bright orange shoes, which is the silly kind of detail that I notice that makes things like "getting four holes punched in your abdomen & your innards cleaned off" a bit less intimidating. Weird? Yep. Yep I am.

Then they gave me Versed in an injection & everything got all fuzzy-the first thing to go is always my ability to focus my eyes together. The next thing I knew I was waking up in a room with a LOT of medical people & a lot of groggy people and I felt naked. First conscious word: Naked. Second conscious word: thirsty. Third conscious word: blanket. I took a fuzzy (and frankly offensive, it's covered in puzzle pieces but was made with loving intent, and my cat loves it) blanket & they gave that to me. And then ice chips. They told me to go back to sleep, but it was too noisy & bright.

I only vaguely remember being wheeled back to the room I started in, but I ended up there & kept asking for water & if I should have my noon meds. They wanted me to have a few more ice chips first. So I did. And then I drank. And drank more. And took my meds. And drank more. They left some crackers there, so I ate them. Mmm, club crackers...this nurse was kinda...uh...spacey, or else I was being very confusing, because nothing I asked got an answer without being asked again.


They made sure I could pee & then I got to go home. I was really out of it physically-like it was taking my brain a few steps to connect with my body-so I kept my eyes closed the whole time in the car.

And then the cat cuddled with me, I slept, and that was really that.

Boring blog post, yeah? Less boring, I guess: they took out several endometriosis implants & one of my ovaries had almost no mobility because of scar tissue or something attaching it too tightly to the pelvic cavity, so they're testing the shit out of that shit. So, I am not a whiny baby-there was stuff in there that causes pain. And it's gone now. Bahahaha.

And Then I Land In the ER Again...

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!

Body policing & erasure & such

-Yes, I realize I have some thin privilege. That doesn't stop what specifically I am writing about from bothering me.-

There's no good way for me to start this. So I'm just going to start throwing words out there and it'll sort of maybe make sense.

One of the big slogans, for lack of a better word, that I've heard a lot of in reaction to the predominant unrealistic female body type seen in the media is "real women have curves!".

By that measure, I am not a real woman. That measure excludes many many women. Many athletic women aren't particularly curvy. Many trans women aren't particularly curvy. A lot of women of all sizes are, in fact, not particularly curvy. It's body policing to exclude even one of these groups of women from the category "real women". Those skinny models who it's fun to hate on? ALSO WOMEN.

This is something that has bothered me for a while, because, well, I am a woman and I have no curves. I wasn't going to say anything about it until a website that seeks to have photos of women of "all" body types came to my attention.

"All" body types includes:
-banana (straight up and down, shoulders and hips and waist all pretty much the same width).
-pear (wider hips than shoulders)
-apple (widest in the middle)
-hourglass (I'm gunna go on a limb and assume you know what that is)

According to their classification of "all" female body types, I don't have one. I'm much wider at the shoulders than the hips, & pretty much straight up and down from the armpits on down. There's no cute fruit name assigned to that. I know quite a few grown women who are shaped like me, and a lot of growing young women who are going to be shaped like me. As a teenager and young adult, some of the adults in my life joked that I was built like a very tiny man, but I was under the impression they were kidding.

So there's a whole visceral "well that sucks, yet another way women who happen to be me don't exist". But there's also the whole thing where body acceptance isn't a zero-sum game. Or shouldn't be.

We shouldn't police women for having the "wrong" shape or size in any direction. I wouldn't dream of saying something hateful about someone larger or rounder than me, but when in the name of empowerment someone (a real someone, not a strawwoman) yells at me to eat a fucking cheeseburger or calls me anorexic or pinches me somewhere not soft (pretty much anywhere) and proclaims that real women have curves...well, I don't see how that's empowering. Disempowering someone else isn't how empowerment works.

(and that isn't even getting into how being a disabled woman intersects with this, or how accusing someone of anorexia maliciously is ableist bullshit, or a lot of other things).

I don't have autism. I am autistic.

That's a thing I've been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others "have autism", are "individuals who happen to have autism", are "living with autism", or the ever popular "are individuals who just happen to have autism".

Those are a lot of words just to deny a fundamental part of who I am, huh? It's like people think if they wedge enough words between their identifier noun and the word autism, they'll pry the condition off of us.

I know that y'all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not "living with autism" or "having autism" or "an individual who happens to have an intimate neurological understanding from living with autism" or whatever.

It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it.

Since autism is like an operating system, you cannot separate it from who I am and how I work. Once you install Linux on your Windows machine (unless you are dual booting), it's not a computer that happens to be experiencing Ubuntu (or whatever). It's a Linux computer. It works differently than a Windows computer or a Mac, for example. It's not broken, it's different. As already discussed, you can't just go and change someone's operating system. It doesn't work.

Respect that. I am autistic. It's not a dirty word, I promise.

Thoughts for Budding Advocates

I've been around advocacy for a while-long enough that I'm baffled that people don't know what neurodiversity is & can't believe that people don't know why r*tarded is offensive, but not so long that I really expect to be 'known'. I've been called a firecracker, a force of nature, & the irresistible force meeting an immovable object-those are my qualifications to write on the matter.

This is directed at those of you who are just finding a passion & something worth speaking out about.

Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.

Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?

Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?

Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.

If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.

Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.

Good luck changing the world, even a little.

What I Refuse to Sacrifice.

There are things that it's not wise to do with epilepsy. Scuba diving comes to mind, and as much as I'd love to try it, the rationale for passing on it until a year of oh so elusive seizure freedom makes sense to me. I understand why the powers that be don't want me to drive. But other than that?

I did high level competitive gymnastics & tumbling and trampoline with epilepsy. I teach the sport, and hope that no child in my care feels held back or feared because of a condition. I social dance (I know, I'm autistic. It works for me. Just go with it, I'll explain some other time). I have friends, and refuse to isolate myself in case of seizures. I go places all alone on the bus and on the train and on planes and by foot. No one is my keeper, nor should they be. As much as the general medical model paternalistic society would rather I didn't, I cultivate my independent streak and display it proudly.

The philosophy "Live as though each day is your last, and plan as though you'll live forever" is kind of where I am with things. I'd rather take some risks now instead of never get to experience things. Some precautions (medicalert bracelet, fairly liberal disclosure, living with a roommate, forgoing scuba diving) are reasonable. But I can't and won't live wrapped in them.

I wonder if dispelling some of the fear and manufactured mystery about epilepsy would reduce the well meaning encouragement to completely avoid risks? Maybe I'll know in my lifetime.

I shouldn't have to beg

I wrote this when I was having Issues with very basic "don't make me seize, 'k?" accommodations. It may be a bit wangsty. Please, give me some suggestions so I don't end up with a month of epilepsy wangst. As is my custom, there is swearing.

Institutionalized ableism becomes clear in a number of places and situations. Where it hits hardest, most gut-wrenchingly, is in asking for simple, by which I mean no-effort, accommodations and consideration for disabilities that aren't easily seen.

Yeah, I know, not having a strobe light everywhere is a fucking drag.I took up the hobbies I did because there shouldn't be any there. It doesn't matter that "you didn't know". A flashing light is a dangerous thing to have in this setting-people are moving in a number of directions fairly fast! No, I won't be nice or apologetic about stating my needs. It's my health vs your ego & your "but I dunwanna". Health wins. Access wins.

So many simple requests come down to need vs ego. Yeah, I know, your feelings are hurt that you aren't funny, you're actually kind of a douchebag, and I just don't have it in me to sugarcoat. I'm not going to. This isn't a preference here. This is a need. Were it just a preference, there'd be a lot less panic involved.

Yeah, panic. When you make me beg for a place to be relatively safe, safe as in non seizure inducing (and we all know I deal with audiogenic issues in my own way), it makes me panic. The power dynamic of begging means you can say no. It means that you, should you deign from your place of privilege to say yes, have a hold on me. And it's not like knowing who I have a crush on or the inane things I did when I was 10-it means you can revoke my ability to safely navigate a part of my world at any time, for any reason or none. A presumably public part of my world.

That's not how it should be. Access should be a right, not a privilege to be revoked at any time, to be whittled away for reasons and justifications that come down to "it's hard". Disabled personhood, epileptic personhood, autistic personhood is still personhood. My access matters just as much as the next person's.

I can't be silent on this as my world threatens to get narrower & narrower. I'm one of those uppity bad disabled people who won't stay silent and in my house. I don't know my place, you say. I defy notions of where my place is. My place is out here living my life to the fullest.

But the panic takes its toll. The seizures take their toll. The nastiness from others, that takes its toll too. By my mid 20s I've been threatened with a knife, I've had my skull bashed, and I've gotten more death threats than I care to count for the crime of wanting a life-an accessable life. If I'm abrasive about my needs, certainly nothing justifies assault with a deadly weapon, when I was 19 or now.

Stop narrowing my world. You won't even miss the flashies. You won't even notice other access features I or other people ask for. You may find they make your life easier too. You may find your world widened. But everyone suffers from the culture of silence and exclusion.