winterkoninkje: shadowcrane (clean) (Default)

Many of us with disabilities have more than one. This multiplicity is invisiblized by the abled community. When our lives are already assumed to be defined by disability, admitting multiplicity risks the hazard of letting the complexities of disabled lives enter one's mind. But even among the disabled, there's a tendency to focus on the one or two things which most obviously impact our lives. This is a coping mechanism. To cope with lacking spoons, we are always prioritizing our energies, and there is never enough to solve all the things. But also, ableism being what it is, we must be careful never to "complain too much" lest we loose whatever ears we've gained; so we consign our suffering to silence, that we might grasp at crumbs of compassion for hope that when things worsen there may still be someone who'll listen.

I have my "one or two things": depression and cPTSD. And I've mentioned my migraines on occasion, though they're seldom of bloggable interest. But there's one I've never talked about, one I've still not come to terms with myself. That's the thing about chronic pain. Noone ever teaches us about all the things that shouldn't hurt, about all the pains most people don't have. And consequently we come to normalize them, to unsee the ways they make us choose —in small ways at first— to restrict our lives. Last week I met a fabulous girl and we got to talking about disability. And with one sentence she cut through me like a thunderbolt, cut through a silence I hadn't even realized I'd been spinning for years. Her words, so simple:

I have a connective tissue disease

I've suspected it for a couple decades, known it for nearly a decade, but it's never been something I've been allowed to talk about. When a teen complains about joint pain, it is dismissed as an insignificance. When a twentysomething does, everyone older jests and jeers; "just wait till you're my age," they say. Sit down. Shut up. Respect your elders. If you're resilient enough to keep at it, to endure the shame and go to a doctor... well, doctors have ways of silencing things they can't cure. When I first saw a doctor for my knees, he acted like it was nothing, like I was a stupid kid bitching about nothing— despite saying, with surprise in his voice, how my x-rays looked like someone 15–20 years older. When I pressed, when I refused to be cowed, he told me there was nothing modern science could do: I could use a splint, but that'd weaken the muscles and exacerbate the problem; I could try working out to strengthen the muscles —at least, for as long as I could stand the pain— but that'd only slow the inevitable by a couple years at best; it wasn't bad enough for surgery, besides that'd just cause even more damage. "You're young," he said in flat monotone, like words rehearsed without meaning. Like pointing out something broken or left behind, when you really don't care if they hear you. Your coffee. Your wallet. Your tail light. You're young.

The thing about genetic issues is that they pervade everything. It's never a singular problem, it's a cascade of them, a death by ten-thousand papercuts. In my childhood, my mother always had issues with her knees. It was almost a joke how often she went in for surgeries on them; the kind of joke people only mumble and noone laughs at but they tell it anyways because they don't know what else to do. During my early college years, her shoulders started going out. A few years back my sister died spontaneously, and within a few months a cousin joined her. Aortic ruptures. In the last year or so, my mother had an aortic dissection. She survived, but more from luck than anything. I happened to be in Maryland when she was in the hospital, and I visited. She'd also been having catastrophic spinal problems. My parents didn't even bother mentioning it until she went in for the first surgery. It didn't go well. Three followup surgeries later and who knows if any of it did any good. Sitting next to her as she lay in that bed, her hands all locked up in pain, held in mine, I could barely look on her. Because I know I'll live to be crippled and die twisted in pain. She's had enough in-patient PT to be released, and is back home now on out-patient PT. Noone talks about it. But at least noone jokes anymore.

I can't say if it was her heart or her back that somehow managed to convince some doctor to take a closer look. He'd thought she had Marfan syndrome and ordered a genetic screening. Tests came back negative. Followups found it's actually Loeys-Dietz, something that wasn't even discovered until ten years ago, and the docs only knew of it because she'd been admitted to the hospital where they discovered it. There's no point in testing the dead, but there's little doubt about what did my sister and cousin in. I've been checked for aortic problems, and show no symptoms as yet. I'll have to get checked again every couple years.

(One of the funniest things about transitioning is how it's been the healthiest decision I've ever made. If I'd've known all the minor health issues it'd cure, I would've fought harder to do it when I was 18. Among the things it helped was my back. While uncommon, HRT can cause corrections in one's hips and lower ribs. Thanks to the changes in my hips and my center of gravity, I no longer have chronic back pain. Growing up I could never attain correct posture: it caused pain and felt unnatural; whereas now it comes freely and without thinking.)

But the litany of little pains isn't what hurts the most. I used to draw. It used to be my life. The fire in my heart, as maths is the breath in my chest. I'd do it when I wasn't thinking. I'd do it to focus my thinking. I'd come home and spend hours at it. I'd ignore eating to finish a piece. I won awards. I thought I'd make a vocation of it. By halfway through undergrad I could barely finish a small sketch in the margins of my notes. Many of my friends are artists (e.g.), and while I love their work, a hateful demon grows in me every time I see their successes or hear them praised. These days I can barely hold a pencil. My script an ever more illegible shorthand as I try to eke out a few more pages before I resign to sitting behind a computer. (The most creative parts of doing math, for me, needs being written. It is only once I have the sketch of a thing can I put it to pixels.) Just bringing up my art, acknowledging it as something lost rather than as something I lost time for, crushes me.

That girl, that blessed fabulous girl. A few days after we'd met I asked her about her ring, a beautiful curious thing, like two rings locked together at an angle. Turns out it's a surgical splint for preventing hyperextension. She told me where to get one, and on the bus yesterday I decided to check out their website. Reading through the descriptions of the rings they offer —I don't even... How do you name that emotion when a pain you've had so long you've forgotten it exists is suddenly eased, that lift, that release, that letting go. Like when you find someone who shares your very same marginalization, that feeling where you can just talk, can let words free without censor knowing they have already been understood before they are spoken. That sudden finding oneself not alone. That slow creeping into existence of a future worth looking toward. I had to turn off my browser. Can't be crying on busses. Can't be weak in public.

March 2017

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