A Kegger Of Amontillado

Some thoughts on living with Parkinson’s Disease, borne of trying to explain what it’s like to some friends:

It’s a lot like being trapped in an Edgar Allen Poe story (pretty much any one, as they all seem to be about premature burial, being mortared up behind a wall, etc.). The one that comes most readily to mind is A Cask of Amontillado.

It’s also like going around in my own private gravity field -- one with a faulty intensity switch. There are times when I feel like I'm wearing my “Parkinson’s suit”, which consists of a big bag of dirt strapped across my shoulders, five-pound bracelets and gangland-style cement overshoes (the kind favored by Jimmy Hoffa). Each movement, even little ones like picking up a glass of water, takes at least twice as much effort. It also throws my balance off.

As bad as that is, however, if I had to choose against between that and not having a voice, I’d pick the Parkinson’s suit every time. For over eight months now I’ve barely been able to croak a few words with about the same clarity as a dyspeptic frog. And when I can produce enough air support to make a sound, it’s so hypernasal you can’t help feeling that somewhere a village is missing its idiot.

So I try to write, but that's no good either. My hand shakes, and people with Parkinson's are prone to micrographia, which means writing teeny-tiny words. I can't write longhand effectively. I can type, but picking away laboriously, one key at a time, really draws out the conversation to an excruciating degree for most parties.

I still have stories to tell, but they're trapped inside my head. Yeah, I know people have written wordage of Proustian length while completely paralyzed, save for an eyebrow or a pinkie they can twitch, so quitcher bellyaching, Reaves. I'm not that bad off, comparitively. But what's a blog for if not to blow off steam every now and then?

There are a lot of crimes that a lot of people have laid at George W. Bush’s door, but the one that’s affected me the most is, of course, his all-but-unilateral ban on stem-cell research, as a cynical bone tossed to the religious right, who think it’s blasphemy to use blastemas for research.

Think about it. To use just one hypothetical example, if stem-cell research hadn't been so hobbled and blinkered over the past eight years, Christopher Reeve might still be alive. Maybe even walking.

It's a sad universe we live in when Superman dies of bedsores.

Obama says that one of his first acts as president will be to undo many of Bush’s medieval policies, and stem cells is high, if not first on the list. I hope so. If I had a god I’d pray for it.

Remember A Cask of Amontillado? Remember the ending, as Montressor walls Fortunado away, brick by brick, in the tomb of his ancestors?

“For the love of God, Montressor!”
“Yes,” I said, “for the love of God.”