Curio of Wondrous Delights

I'll eventually get round to posting these on tumblr, but the rehab center/nursing home they've temporarily sent me to has terrible internet that will barely load dw, much less tumblr. Or my school website, for that fucking matter; I’ve had to file for incompletes on all my courses, and hope I’m out of here well in advance of getting the work completed because to study in this tv -riddled sensory-overload landscape is impossible.

The details are so pedestrian: the common story for so many disabled folks of one mistaken step that jeopardizes all their hard-won independence. I took a fall doing something that was, retrospectively, rather thick. But I'm proud and stubborn and...and I paid a vastly higher price for being stupid than most people, because of my cerebral palsy.

Spinal fusion surgery is never an "easy" thing to recover from, but it shouldn't send you to a nursing home for a month either. Unfortunately, the way you need to sit up--and walk and do...everything really--is nigh on physically impossible for me. At least, while on spinal precaution, which is the name of the game for the first 4-6 weeks--one week already passed in the hospital, so four-five more of this. For so long, my strong back has compensated for my painfully weak legs.

And when it can't anymore, well...then we're talking about physical assists to go to the bathroom. And stepdad is 71; he has no business doing all that shit (he offered, repeatedly, because he knows what a deeply visceral terror sitting in a place like this is for me, but there are some offers you can't in good conscience take).

This place...it's not one of the worst. The nurses and staff care deeply, though they're painfully overworked. But it's hedged about with regulations. Take, for instance, the bathroom saga. I was evaluated by physical therapy on *Friday*. On *Friday*, they agreed it would be more than good for me to get the physical assists to go to the actual bathroom, with such unmentionables as adult diapers as a precaution if I couldn't make it, considering the added physical stresses. Galling, but fair.

Fast-forward to late Saturday night, warm trails of piss spreading in a lake around me in bed. Because y'know what they didn't do on Friday? Put it in the computer. Which means none of the aids will take me to a physical toilet because physical therapy hasn't verified my fall risk yet.

There are no words for how dehumanizing it is to lie in your own fluids. There will never be words.

Nor are there words for the simultaneous sensory-depravation and overload hellscape. No going outside, except with family, and I, who love this time of year am dying at missing the warm weather and smelling recycled air. So, no new experiences, but oh fuck, so much noise. Tvs constantly on as people try to relieve the unremitting boredom of just...existing here, waiting for various therapy appointments.

Oh, the staff say--and truly mean in many cases, particularly of the elderly patients--that they provide both medical care and a toolkit to avoid future falls. But I have a million hacks to avoid falls; I just also have cerebral palsy on the high end of the "moderate" spectrum, which means sometimes, they don't work.
My one uncomplicated delight is roommate, a wonderfully spit-fiery octogenarian. And her daughter brings waves of brightness into our lives like yesterday's fresh watermelon delivery. I'm overjoyed she's getting sprung on Tuesday.

I know why I'm here, and I'd do it all again to spare stepdad, who was there every second in the hospital and whom I love more fiercely than I thought I would ever love anyone aside from my Mom. I've made abundantly clear to the social workers I'm out of here the minute I'm off spinal precaution, fuck their recommendations. And I'm trying to learn some new therapy tricks. But oh GOD, y'all, oh GOD this place is bleak, and I feel like it's bleached everything from me but the need to survive till the end of four weeks. Fortunately, there are therapy services for the brain...they're not weasels anymore; depression is like swimming through treacle and slowly drowning and hasn't been this bad since I started my lovely brain-chemistry miracle meds.

There are so many memories I want to preserve--of deeply kind nurses and stepdad's forehead kisses and...so many things I'll write about another day. But right now, I just want to hold the brightness of watermelon close and try vainly to go back to sleep. Because of course, internal clock is utterly ruined, and sleep more an exercise in passing off time than anything refreshing. Still, there is watermelon in the world, and ice water in my thermos and I will survive this.

Somewhere in the tumult of summer semester, I discovered the work of the inimitable C. S. E. Coony through her remarkable novel Saint Death's Daughter. The novel itself is a constant unfurling joy for me--it's almost six hundred pages y'all and it has footnotes and the feel of a grand Tolkien epic except it's queer and centers women and poetry and necromancy with consequences and I could wax rhapsodic endlessly and haven't even finished it. But, for the purposes of the post at hand: there's this passage where two friends discuss the fact that one has utterly failed to correspond for eight months. And the failing correspondent looks helplessly at the intended recipient and says: I have fragments of hundreds of letters I began writing you, but there were never-ending distractions. Y'all, I want a shirt or mug or something because best mood encapsulation ever.

Summer semester was a whirlwind: learning the online learning environment, remembering my unpardonably rust MLA. Fall is a delight and challenge, with profs who're pushing me harder than I've ever been pushed. Except. Except for biology, which is eating up time like a ravenous dragon and making it impossible to give my other classes the attention and thoughtfulness they deserve.

The college contracted with McGraw Hill, which is notorious for being vile on the accessibility front. They've claimed to invest significant time in righting past wrongs, and initially I was cautiously optimistic. But the activities that are accessible--and they have modified things in some cool and interesting ways, with good descriptions of graphics--still take two-three hours with a screen reader, compared to the hour they're "supposed" to consume. And sometimes, you run smack dab into something that just...isn't. Like they put in tremendous effort and then got exhausted and went fuck it, we won't implement the proticals we already have here; no one will call us on it. I'm getting by on a mishmash of scribes and complicated written explanations to show that I do understand how the other students are dragging and dropping.

So, for all of you I owe E-mail too, or who I've just dropped out of comment threads with, I'm so damn sorry. Know that I would vastly prefer engaging with fandom right now, but for the moment, hell's circle has a boa-like grip; eventually, perhaps, I will escape.

Yes, I still do occasionally haunt these dustiest of blog-regions, and even hope to haunt them more frequently. Things are remarkably, delightfully good, and I feel like I have a shocking assortment of things from which to chose being joyous about. Not least of which is that I finally, after enough hurtles to make myself a fine modern fairytale--dean's aides standing in for witches, and painfully inaccessible tech and course materials making the finest thorn hedges--I've finally breached community college's gates. I start end of this month, y'all, and I'm incandescent with wonder and delight.

But late on a Friday, I wanna talk Ivan Coyote's Rebent Sinner. Specifically, my delight at finding it free on spotify as narrated by the author themself. Caveat that I don't know if it's available outside the USA, and I've no idea how long it will last.

But for right now, you can hop right over here and listen to its nigh on four hours of gloriousness.

The connections between essays in this collection are subtle and thought-provoking, highlighting the raw places in armor even as we try so very hard to be strong. We open with an antidote about the smoking habits of the ladies of Coyote's family, led by her formidable grandmother who possessed a machine for making homemade cigarettes, and would buy the cheapest, vilest ones when she couldn't get the tobacco for it. All this was in service of justifying an expensive habit with corner-cutting, even as she and the other women knew they were spinning a fiction.

Late in that piece, Coyote promises an older family member that even as their gender may be confusing, they can recognize the blood that flows through Coyote's veins. And then, the essay simply...ceases; for a moment, I sat, baffled, before deciding to continue. And then! And then, later in the book, a piece opened, where Coyote was trying to explain to a college kid how to build up some skin against the myriad microaggressions, reaching for words, even as they hoped that one day, they could tell a story in which their transness wasn't at the center. They fantasize wistfully about being just another elder, whose worst trouble was struggling to get a gravy boat down from a cupboard. Even as they were trying to emphasize the need for resilience, to say that the microaggressions had practically stopped mattering at this late date, a toll was felt. It was the same sort of fiction necessary to get through the day their Granny had deployed with her cigarettes.

And I just sat, stunned; at how much was said via the unsaid as the words on paper; by the juxtaposition of pieces, and the courage to embrace ambiguity and contradiction.

I haven't finished it all, but I can't rec it highly enough for a weekend listen.

Musings that somehow start with a recipe and grief and then turn sharply into politics, immigration, and colonialism beneath the ( cut for length )

[apologies if this, or any of my entries for the next few months/weeks are a bit incoherent; I'm going to try and keep posting semiregularly, on the theory of fake it till you make it this has to get better but sleep etc. may be spotty, so no guarantees it won't be massive grief drunk-blogging.]

If there's any truth at all to the idea that the worst of times show a person's truest character, I suppose I really am an absurdist, because I refuse to forget there's joy in the world--even if the idea of ever being able to smile again feels as unconquerable as climbing Everest or learning ancient Greek. So here're five things that would have ordinarily sparked joy, in best of five things make a post blogging spirit; perhaps they will spark joy for some of you, and they'll be here later as reminders that sometimes the world is good.

• I always sorta vaguely knew Cory Doctorow was a badass for internet freedom/privacy, and all the info/goals on his kickstarter to self-produce his latest audio book just prove it. (Also, he was a Bernie person in the primary; that gives you automatic good-folk points with me until I'm proven otherwise.)
• Speaking tangentially of Bernie, this podcast about how a group formed in Rhode Island in response to his primary loss just swept the state house and senate, here in this country where states have a ton of autonomy, is pretty fab; this reminds me a lot of the excellent work Momentum is doing in the U.K. labour party right now.
• Speaking of podcasts, I was listening to this interview by Arkady Martine when everything happened. I can't even imagine finishing it now, but it was giving me so much joy, watching her wax eloquent about Byzantine history and kinda clean the clock of the interviewer, who was a bit of a techbro, by clearly articulating that technology doesn't eliminate cruelty with such panache it became the headline. I think it could bring y'all joy
• Avatar: The Last Airbender is in audio description on Netflix. The increasing availability of AD is a marvel and delight.
• I also have access to a copy of the first season of Perry Mason from HBO, which was the last TV show my Mom loved. And while I won't get to talk to her about it, I will one day watch it in her honor.
Feel free to share joyous happenings for you, too.

It is looking more and more likely I'm on my way to being spectacularly sick for the third time this winter--fuck the flu is killing me. So if I go quiet for a while, esp in ongoing conversations, not ignoring anyone. Just miserably. miserably sick and gonna curl up with good books and SheRah and The Princesses Of Power's latest season.