Thursday, March 16, 2006

Today : Other people don't understand

So anyway, I'm in a new class today - 14 year olds. There's this one kid with shades on in class. Usually this is a sign of Irlan syndrome or one of the many reading problems people have. So I say to him. "Those are pretty cool shades. Usually Irlan syndrome glasses can look pretty dorky. How come you have, like Oakleys?"
"They're not for reading," he says, " They're for the migraines. They don't know if I'm sensitive to light or if it's the drugs."
"Are you a druggie then, " I ask - jokingly, of course.
"Yeah," he says, "A real smackhead."
He reaches into his pocket and produces one of those pocket drug dispensers designed for elderly folk that you can buy from the Innovations catalogue, as if someone only just invented it yesterday.

"This one's hormone replacement. My pituatory gland's messed up. If I don't have it then I won't develop and all that. This one's to help my bowels, because some other pills I had to take messed them up. This one is for the fluid on my brain..." and so on. There are eleven different pills, many of them are to counterract the side effects of other pills. "I had this brain tumour," he says, "Now I'm walking chemists shop."

"Bloody hell", I say. "I've found someone who's more of a wreck than me!"

So we talked: about how some people try too hard and end up patronising you, how some people treat you like you're stupid, how some people are dismissive of things like pain. How lots of people can't face the reality of illness and disability.
"They just don't what it feels like so they don't know how to react," he says.
We talk about how you put on a brave face in public and have your angry, down times in private, how being victimised and punished by your own body changes your whole relationship with your physical being, how you get jealous of people who never experience pain, (earlier that day I dismissed a 13 year old kid who tried to get sent to the office by claiming to have a painful finger by luridly describing the pain I was suffering in my feet) ,how sometimes you get what you want by laying a guilt trip on people, how you end up talking in drug names like an episode of ER.
"You'd think teachers would be better at understanding, but they're not," he says. The boy across the desk has put his pen down and is listening in. The girl next to him follows suit soon after, dropping her pen and listening in without speaking.
I tell him the story about when I was in a staffroom and got out of a chair to walk about five yards. I wasn't in too much pain and the territory was very familiar so I went without my stick. Another teacher jumped from his chair and ran around the room shouting "It's miracle! He walks!"
"Sounds about right," the boy says.

The last thing we talk about is how we hate all those 'inspiring' ill-people stories. How anybody who has an illness or a disability and manages to do anything at all gets put on a pedestal as some kind of inspirational hero.
"What do they expect us to do? " he says, "Kill ourselves? I don't see how just getting on with things is so heroic. Not getting on with things would be the strange thing."

The thing is, even while I agree with him, I can't help but find him a little bit inspirational. He seems to have a much more considered and adult approach to this stuff than I do. I have bendy deformed feet and chronic pain that restricts some things I can do. He has a series of diseases that seem determined to kill him and a series of cures that only make him ill in new, more elaborate ways. In fact the only real thing we have in common is that we understand that other people don't understand.

"I spend all my time wondering what I'm going to get next," he says "Other teenagers worry over getting a spot or something."

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