the sword what touched his shoulders

He was, as usual, funny, spry, self-deprecating; the kind of guy who’d write a series of books about inept wizards, smart-mouthed witches and a world carried on the back of an intergalactic turtle. The kind of guy who would make a joke about worrying, during his knighting, that his fly was down. Not a guy you’d think has Alzheimer’s.

But of course he does have Alzheimer’s, and the fact that he’s not typical is part of his campaign to raise awareness of the disease.

pratchettwarn372Even though I’m familiar with his tricks, the recently knighted Sir Pratchett still tickles my bones; funny or not.  I have precious few idols in this world, but he’s a personal hero that I’ve kept close since I found him on the shelf as a skinny teen. Oh, sure, there are those I admire, envy from afar, and they circle me like planets out in the black; but Terry, Terry’s kept me in perspective for many, many moons. Like the moon, he’s something I refer to when I need to ground myself – and be reminded of the Joke: that great cosmic wisecrack snapping the world.

(I began reading Making Money just after I was diagnosed Bipolar.)

The man who started off by writing a book to satirize the fantasy genre, and ended up satirizing, well, just about absolutely everything else in the process, he has demonstrated a keen, qualitative mind full of facts, that is now, it seems, doomed to slowly drain away. He’s 60. It makes me terribly sad.

So it comes down again to illness. Illness comes down, as if from the sky; like an Invisible to weight you for the rest of the journey; “an embuggerance.” My Invisible has been greeted with a number of defenses, not the least of which are shields of platitudes. “At least it’s not cancer” is a favourite. But you could add to that: M.S., terrifies me; degenerative diseases of the digestive system are another set that do the trick; but Alzheimer’s looms like a moronic giant in the future, ready to carelessly stomp out everything I value. Everything. The erasure of words for the wordy, mental connections for the connected, these are the things of nightmares. Isolated in the past and unable to bridge to the present. Or, in Terry Pratchett’s case (he’s been diagnosed with posterior cortical atrophy, which affects the visual processing centres of the brain), become lost in a world of unidentifiable shapes and symbols; able to look, but not understand. Yes, I quake.

…he notes, wryly, that he has lived a life that’s not exactly hard on the body – no smoking, minimal drinking, one wife and a child. It might have been a relief when he encountered a top Alzheimer’s researcher and asked him what the predetermining factors were. The scientist responded immediately, “bad luck.”

What it arrives at again. Dice come up snake eyes, you bust, you land on black; there’s a gremlin undoing the bolts that fasten someone’s world, arranging coincidence to sabatoge all the chances. You’re at the mercy of capricious forces. It’s the Joke in action; and who’s laughing?

I sometimes think of irony as a sentient force in the universe.

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~ by A Mundi on March 11, 2009.

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