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.

winterkoninkje: shadowcrane (clean) (Default)

An Atlanta area mother was recently convicted of vehicular homicide. Convicted for the crime of being a pedestrian hit by a drunken driver, a driver who was also on painkillers, also half blind, also convicted of two previous hit-and-runs. Her child was also hit, and killed, which is why she's now a criminal. In truth, she was convicted for the crime of being black and poor in America. I haven't been in the country six hours and this is the news story that greets me. Racism, the othering of people who take public transit, and the deadly violent car culture that dominates the US.

A (white) friend of mine was killed in a crosswalk in Portland years ago. The SUV driver couldn't be bothered to check if it was safe when making a left-hand turn across a busy street, at full speed without slowing at all. There were witnesses. He also fled the scene. She was headed to the corner to next to her apartment to buy a mop.

I've been hit three times in crosswalks, all three with the walk sign on and a red light for the cars. Only one of those times was it serious. But I was saved by the fact that the rich white man was driving a sporty little thing so I went over the hood instead of under.

What a welcome home.

winterkoninkje: shadowcrane (clean) (Default)

Learn that the heavy thoughts of love's disunion should ne'er take place in one's own room. Emotion lingers in the floors and walls and hangs like miasma needing cleansing by light and wind, by earth by sun and water, and smoke and ki and time.

An old friend now distant, a mentor even of sorts at times, would say to me his life was a series of vignettes.

The bus driver welcomes me aboard. The new one, older, stooped, who always looks so beaten, broken, by age and time and life. Surrendered to fate yet whipped when down. Familiar faces. Continuity, stability, that glint of relief when I step aboard. His words say welcome, but his eyes say thank you.

Rose Park Transit: there's a family of the street on the corner with their bags and matching clothes. See the men in matching uniforms, a queer conspiracy, blue gloves and passes them a card. Two officers in Portland blue and you notice the two in green must be too. Medical? Loitering? The meishi offering hope on the back of three and a half by two.

From where the bridge starts you can look over the tracks crosst a lonely park just grass and two trees or three. There's a sign on the side of the building there, where too few would seem to look. A white sign, the kind which rolls on with paper and with paste. On the top is a picture of the american flag, the bottom torn away, systematically erased. But the concrete behind the paste and paper cannot erase the image once seen. An american flag feld up into a box, two meters long by half by half...

Out over the bridge the river is bright in the sun of days. The vault of heaven far above and filled. Rolling cumulus slightly greying, not from rain but for the darkness. Beyond their majestic guidance the blue and clear crystal far too far to reach. The skies exalt us with their presence. And we in out meekness scurry 'bouts, some fearing the thunderous foot, the silent loud oppression. It will not come today, only but we can play our gods. They wish only to remind us of the gleaming brightness they obscure. And we so far from heaven feel a darkness under that far veil, the distance all we can remember.

Chinatown is dying. We've all known and turned silent eyes to the historic district, the past too dirty, the fanciful image too new. Buildings turn bleak and dark, boarded up forgotten. But busses still pass through, down the bridge past Blanchett House and all her charity. Rumbling down concrete streets, homes for the humble but not the few. A man on the corner standing. Two police, not partners, two squad cars, but maybe partners. Well dressed he's pointing out directions, a story telling. Asphalt rumbles under feet as the wave of the intersection fades past and we head where he directs and we forget again. The fountains have turned on for spring.

TIme comes to deplane the bus on these familiar foreign streets. A parade of roses will doubtless flower the streets again at nights. Until then, sun. Buildings loom, not frightful but large, the great masterwork of Man. The velvet under ground. A café filled with aging crowds, but the age becoming slowly my own. These magic moments as looking over tables of tables of the prosperous discovering hope and fortunes in boxes of electric. And the song fades into another, and the mood becomes vibrant, the air excites and thunder quiets in our heads. Outside the clouds have cleared and our music reaches up, up, into the lightness. And I step out the bus and the driver looks over. I wish him the day's goodness, but he's already smiling.

winterkoninkje: shadowcrane (clean) (Default)

"Do you know why the eyes of men are always full of desire? It's because there's no limit to Hell or Sin."

Nine a.m. on a tuesday. The man had just stepped out of a bar to untether his bicycle. An air of hope lilts on his voice, like a preacher, or like a man seeking refuge in tried aphorisms once he's given up on his own salvation. "Hell's never full." I sip from my tea, a calming mint and green.

I disbelieve the man, but the sun is too low in its arc to contradict him. Desire, I want to tell him, is not an evil to be purged; It is perhaps the best force in the universe. Though, I admit to myself, misplaced desire is the source of all too many ills in life. The man gives me more tokens for my salvation, and I smile. He's kind enough about it, I hope one day he can find his own. The bus arrives and I board.

"Come by my house." A voice, near the back. "Hit 2, 4, 7. You have ID right? Yeah, come by my House. You can stay there tonight if you want." The reply is garbled, slurred. Not from booze but from some impediment. Perhaps the man has cerebral palsy, perhaps it's just a speech disorder.

"Heh, you thought I was a homo didn't you? You did didn't you?" A smile colors his voice, like flirtation. "I've tried some things. I think eighty percent of men have tried things..." We stop in front of Blanchett House and the man starts to get off. The slurred voice asks him what the number was again. He answers and steps off, grabs his bike and rides away.

The bus pulls out, rolling down fourth avenue once more and turns at the Greyhound station. After Burnside I transfer busses. Looking out the windows I hug my backpack to my chest and it feels comforting.

winterkoninkje: shadowcrane (clean) (Default)

So I was on the bus today, heading to the post office to mail some things to Australia, and there was this guy on the bus. I see him on there not uncommonly, this old gent with a stoop who's always wearing his veteran's baseball cap with its cheap plastic weave in back and the pins and medals he's won. Usually he's the sort who gets on, sits in the front, and twenty blocks later he gets off, never says a word, never looks deep in thought or overly emotional, never has a book nor looks at the scenery. Today though he somehow got himself in a conversation with this kid, couldn't've been more than 17. Sounded like the kid had signed up for the army, or the marines, or some other armed service. The old man was telling the kid he'd served full terms in two wars, asking him if he watched the news at night, telling him when he watches the news he fears for those boys. The man tells the kid not to sign up, to watch the news, says maybe sign up in six months, but not now; he's served in two wars. I tried to listen in over the hum and rattle of the road, tried not to look; every time I glanced over to hear better, the old man'd look at me, he knew I listened. He told the kid not to sign up, don't break his mother's heart, not so soon.

We got off at the same stop, the old man and I. He never tried to talk to me, but I thought over his words, his conviction. "Don't break your mothers heart, not so soon." And I came to realize that that's what it comes down to, in the end, how you survive two wars; the only thing that matters is your own life and those you love. I could tell the kid had that vision, like he was doing his Duty, like he was Serving His Nation, like he was proud we was not so cowardly to send another to die in his stead; he had that vision but knew enough to be too ashamed to admit it. And it's not a bad vision, but you could tell from the voice of this hunched old man, that visions don't matter, that the morality of sending others in your stead doesn't matter, that in the end it comes down to all too human emotions, only yourself and those you love; that's the only way to make it through.

And I got to thinking about what it would be like to get to be as old as he, and recalling some things my brother was saying recently about retiring from the tech industry. And y'know, twenty, thirty years from now I'm not going to care about XML, not going to care about keeping up on the latest technology or the latest programming language, prolly won't care about programing itself. Thirty years from now I'll care about linguistics, care about anthropology, care about the social affects of life: good food, good drink, dancing, discussing, love, friendship. The computer is a tool of productivity. In youth, that is, in young adulthood we care about productivity, we're going to DO something; we're going to discover the next big thing, or invent it, or make lots of money, or do lots of drugs, or see the world; but there comes a point where we don't care what we do, but rather who we do it with. There comes a point when we realize that life isn't about what you make of it, it's about what you take from it. So, I figure, I've got twenty years to revolutionize computers and linguistics, and after that... ah, who gives a shit?

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