Thursday, August 10, 2017
The Way of the Polios
So here’s what makes me crippled: It turns out that my body evidently doesn’t produce survival motor neuron protein at high enough levels due to a mutation in my survival motor neuron 1 gene.
Really? That’s all it is? Sixty years and counting of dragging my crippled ass around and it’s all pretty much due to a fucking protein deficiency? Well I’ll be dipped in shit. It’s kind of like the Down Syndrome people. They all just have an extra chromosome. All the shit we give those folks and that’s the only difference between us and them.
Knowing that all I have is a protein deficiency is kind of a letdown. It makes me feel so ordinary. Some of the previous explanations for what makes a person become crippled like me were much more interesting, such as demonic possession or excessive masturbation.
And now, who knows, but maybe they’ll be able to treat my protein deficiency to the point where my species of cripple will soon become extinct. Because last December, the FDA approved a drug called Spinraza, which showed some positive results when tested on people who are crippled for the same reason I am.
So maybe someday there won’t be any new cripples like me in the pipeline and once all the old farts who have what I have die off we’ll all be gone. We will have gone the way of the polios. When I was a kid 50 years ago at the cripple school, there were polios all over the place. You couldn't spit without hitting a polio. But the only polios you see in these parts these days are old farts. And once they die off, the only place you’ll see polios anymore will be in old black-and-white photos. It’s true, however, that the polios could always make a comeback because, technically, they aren’t extinct.
But the sliptos are an extinct species of cripple. Back in cripple school about 50 years ago, there were these kids who’d show up one day walking on crutches with one leg tied behind their backs. They walked that way because they’d fucked up their hip somehow and their condition had some weird medical name that sounded like Slipped Hippy-feces. So we just called them sliptos. Gradually, these kids got better and returned to walking like regular kids walk so they were allowed to return to the schools for regular kids. You never see sliptos anymore. Either kids no longer fuck up their hips that way or if they do there’s a better way to fix it that doesn’t require them to walk around on crutches for a year with one leg tied behind their back.
Knowing that cripples like me could soon be extinct is kind of a letdown too. It feels weird to picture everybody looking at black-and-white photos of us and being glad we’re gone.
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As " a polio"', I would usually object to having my disease standing in as a noun meaning "me". For Mike E, though, no ire, due to his equal opportunity offenses. And funniness, natch. What I really want to say, though, is...what a brilliant, devastating and wonderful last line.
ReplyDeleteAnd what about this week's news concerning "gene editing"? That scares the crap out of me! With prenatal testing, you could eliminate a lot of crips. The world could be filled with designer babies!
ReplyDeleteAs a polio, I always feel like those with my disability are becoming extinct. Then I look outside the U.S. and remember kids are still getting polio every day. Little cripples like me will live on for a while. They just won't speak English. LOL I laughed so hard with this one. You're so badass!
ReplyDeleteAs a "slipto" in the mid 1970's, I had surgery that involved inserting six inch long screws in my hip to hold the ball of the ball-and-socket joint in place. Six months later they had to take them out because one or more had "somehow" screwed themselves in just further enough that their pointy tips were scraping the inside of the socket of my hip joint every time I moved my leg. The surgeon later confessed to my mother that he had screwed them in too far himself and told her he was sorry and, because of that and the fact that he had a picture hanging in his office of him and a group of about a dozen other people meeting the Pope, she forgave him and didn't sue him. She didn't mention that until I developed arthritis in that hip a few years later and the statute of limitations for suing him had expired. They're all dead now, including the Pope, and probably up in heaven playing bingo now if they were right about there being a God and all that. I doubt that I'll be joining them, though, what with my being a bitter angry complaining type of cripple instead of the happy "heroic" inspiring kind that everybody likes to feature in human interest stories.
ReplyDeleteI have type 3 of what you have, and honestly, I feel the same way. I know it's a good thing that eventuality no one will have SMA, but at the same time, it's frightening. No one will experience the same struggles we have. Is it wrong to say I hope that people can continue to live with SMA, but be able to get enough treatment to prevent it from taking their lives? I don't know. Being disabled is such a weird experience.
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