I imagine there is some set of etiquette rules that cripples are supposed to follow when lining up for treatments and cures, eh?
I imagine the cripples that get to go to the front of the line are those who were the guinea pigs. They’re the ones who gladly let themselves be beta tested. They dutifully spent hours and hours working out in physical therapy gyms, took part in drug tests and/or agreed to have experimental surgeries.
I guess if I were interested in checking out a treatment or cure, I would be considered a gate crasher. Because I’m about as far away from a guinea pig as one can be. I’ve always had a strong aversion to being part of any campaign to cure my crippledness for a lot of reasons. There’s nothing I find more tedious than exercising and medical compliance. God, how I hate taking time out to take a shot, change a dressing or whatever. I don’t want to fritter away precious hours of life being medically compliant unless I’ll die if I don’t. I feel the same way about exercising.
I also fear that if I come anywhere near a cure campaign, I’ll get sucked in to being an ambassador. What a horrid thought that is! I’ll be expected to become an eloquent spokesperson for why it sucks to be someone like me. That’s how these cure campaigns work. But I don’t want that kind of pressure. It’s too high of a price to pay.
A cure ambassador can never behave like a jackass, or you might ruin everything for everybody else. Because an effective ambassador must be tragic, even if just subtly so. And in order to be tragic, one must be ironic. Thus, the more brave, plucky and inspiring you are, the more ironic/unjust/tragic it is that you are crippled. But deep down in our collective, charitable heart of hearts in America, nobody wants to cure a jackass. We won’t admit it, but it’s true. There’s nothing unjust about a crippled jackass. So I’d rather stay way the hell away from any cure campaign and leave myself the freedom to behave like a jackass, since I know I’m inevitably going to anyway, like everybody else.
I’m wondering about all this because the FDA approved what some call a promising drug for the treatment of spinal muscular atrophy. I think that’s what I have. I don’t know for sure because when I was a kid in the 1960s doctors just figured everybody like me had muscular dystrophy, which meant they all thought I would die by age 20. When I didn’t die by age 20, the doctors felt betrayed. They didn’t know what the hell I had. And I never cared much what my official diagnosis was. I claimed MD and moved on.
The drug is called Spinraza. They say it might at least stop or slow the progression of SMA. One of my buddies is trying it. He’s older and less crippled than I am. First off, he says he had to fight his insurance company for a year to get them to pay for it. And the Spinraza, my buddy says, is administered through a series of spinal injections.
Yikes! First you spike your blood pressure through the roof screaming at your pig-headed insurance company, and for your reward you get a series of spinal injections. I don’t know about all that. And besides, it says on the internet that the most common side effects of Spinraza include upper and lower respiratory tract infections, complete or partial collapse of a lung or lobe of a lung, constipation, headache, back pain and post-lumbar puncture syndrome.
Post-lumbar puncture syndrome? That sounds spooky. I think I’ll wait and see how my buddy does with the Spinraza. If his lungs don’t collapse and he doesn’t die from a respiratory tract infection or constipation, maybe I’ll look into it. Maybe then it will be worth the risk.
But am I worthy? Have I earned it? If I try to get in line, will I be resented by those who sacrificed their bodies, their time and their freedom to behave like a jackass to get here? Will they call the bouncer to throw me out? “Go find your own cure, ya mooch!”
I guess, under the right circumstances, I wouldn’t mind getting a bit of break from my crippledness. But I wouldn’t want to be rude about it.