world gradually becoming read-only
Sunday, April 15 2007
Gretchen was still down in the City, where she was experiencing heavy rains from a fabulously powerful nor'easter. The weather up here, a degree and a half to the north, were considerably more wintery. A wet snow had fallen, followed by sleet, all of which had partially-melted on the ground. Air temperatures were in the mid-30s, which should have meant rain, but for some reason it didn't. The road was covered with a treacherous mushy substance resembling split pea soup, and I had to cancel and appointment east of Woodstock.
By tonight, temperatures had climbed to nearly forty and a continuous cold rain was falling, which had washed away the slush on the roads but left it mostly intact upon the lawn. On the empty streets and highways, Gretchen had no trouble driving home, arriving at around midnight. She'd had an okay visit with her ex-girlfriend, but they hadn't gotten tattoos as originally planned. (It would have been Gretchen's first.)
I spent the day mostly watching television, which is one of the best ways to idle away a day spent by yourself, particularly when, at some point, an entire pint of Ben & Jerry's ice cream is consumed.
At some point I saw a program on Frontline documenting Stephen Heywood, a young ALS sufferer and his dedicated family, who actually went through the trouble of setting up a guerilla research lab to find a cure before his time ran out. They felt this was necessary because ALS (also known as Lou Gehrig's disease) is an "orphan disease," meaning it has too few sufferers to attract the interest of pharmaceutical companies (which aren't in the business for their health). As with all ALS labs, this guerilla one was packed with cages containing genetically-engineered mice with a genetic defect known to cause ALS. Various drugs were tested on these creatures to see if any days could be added to their short lives. As fundraising bore fruit and money poured in, the staff of the guerilla lab grew and the facility was moved to successively-larger spaces, where they weathered one fiscal crisis after another.
These scenes are intercut with those of Heywood as he followed ALS's typical downhill trajectory. At first he was limping about and speaking with a slight slur as he went about his work as a carpenter. But eventually walking became difficult and he bought himself a motorized wheelchair. Later, once Heywood's hands became completely paralyzed, he had to have specialized controller switches added. Eventually Heywood's voice lost all intelligibility and he was forced to use a Stephen-Hawking-style voice synthesizer controlled by a head switch. A feeding tube was installed when he'd lost his ability to swallow, followed eventually by a portable respirator once the movement of his diaphragm became unreliable. Watching Heywood gradually lose his ability to interact with the world over the course of an hour of television was incredibly poignant, but it was the kind of poignancy that snuck up on me and didn't really reveal itself fully until hours after I'd seen the show. Here was a man whose world was gradually becoming read-only, and there was nothing he could do about it. Oddly, though, Heywood maintained a weird optimism through the whole ordeal, claiming the lowering of his expectations kept pace with the diminishing of his abilities.
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