As part of my debate with the folks from http://www.grouchyoldcripple.com this morning, I needed to find the proper usage of the term ‘atrophy. Remembering the term had something to do with Muscular Dystrophy (MD), I plugged the term into google, and came across this Reuters report. It’s about a poet, Mattie Stepanek, who died earlier today of an MD-related condition, age 13.
This boy – although he was indeed a man – apparently inspired America: he appeared on Operah, and spoke to Jimmy Carter. Reports say he had wisdom beyond his years, and this I can believe. Although we didn’t always get on, I felt my classmates back at school had a kind of wisdom: they saw their fate, accepted it, and simply got on with life. They are indeed braver than any soldier of Agincourt, the Somme, Ypres, or any battle. Reading the article, I thought of Andy Fox, as my mind frequently does, and how he could see any situation as it truly was. A man who did not deserve his fate, but bore it as if it was weightless.
‘he ain’ heavy, father, he’s my Brother.’
So, now Reuters has reported on something I thought was confined to the deceptively cheerful walls of Hebden Green School, or the writings of La Guerra: the dark side of disability; of grieving parents; of kids who deserve more. This subject used to make me angry – the day Foxy died, I came home and smashed up my room/ but there’s no point. Like Andrew Wheetly, Lee Donnelly, Phillip Littlewood, Dave Giles, Andy Fox and Mattie Stepanek, one just has to accept fate, which is even more sad.
The week after Foxy died, I had a speech therapy lesson. The speech therapist, Ms Hickson, whom I had known since I was six, often decided to forgo any structured therapy and just let me talk. This time, we discussed foxy.
”They’re all going to go, aren’t they?” I said. It was true – most of my classmates had some form of MD, and would sooner or later die.
”Yes” Mrs Hickson said. Then she did something unique: she broke with the school’s optimistic air and spoke with realism. ”Which would you prefer, Matt: to die young like Andy, or to live a long life in a body like Kirsty’s?” Kirsty had a very severe condition where she couldn’t walk, talk or move properly although her mind seemed to be fully functional. She would probably be placed in an institution after leaving school, and live a long life. Clearly, there were fates worse than Andy’s.
This is the darkness that pervades what I consider ‘my world’ – the world of disability. Yet within darkness there is always light. My friends always had a boundless kind of optimism. We would all do well to learn from them.