State-of-the-Artist

I suppose I should tell you what this disease is really like, from the inside looking out. No doubt you are all dying to know.

But first: A word from our sponsors.

Harry and Louise are sitting in two bathtubs on a beach, staring glumly at a sunset. Louise speaks first:
“You know, if we had only had affordable health care, we could still live in a house with indoor plumbing.”
“And running water,” Harry mutters.
“Hand me the soap, honey.”
“It’s all gone.”
“Gone,” Louise sighs. “All gone. All because of your lousy, stinkin’ gallbladder.”
“Now it’s with the gallbladder again. Forget about it, OK? Want to make out?”
“I’ve got a headache, and you know we can’t afford aspirin any more.”
“Oh, yeah. I forgot.”
Fade to black ...

OK, back to the subject of me. This is a very strange disease. I am used to normal illnesses, where you feel really crappy for a while, you get honest-to-God symptoms, then you get better. Colds, flu, heart attacks, chicken pox, pneumonia, etc.

ALS isn’t like that. You’re walking around feeling great, and one day you can’t turn a key, and you think, “that’s odd.” You check your keys ... it’s the right one. It just won’t turn. It’s obviously the key’s fault, because you are absolutely normal, everything is fine. You feel exactly the same as you have felt all your life.

Or, somebody says, “you sound drunk,” but you’re not. Or, out of the blue, you can’t lift a tea kettle. Or, if you’re in Lou Gehrig’s league, suddenly you can’t hit a fast ball. That’s not something that’s of concern to a lot of us, but it certainly was to him.

Still you feel great. Never felt better. Everything is working exactly as it should. It’s just that you are suddenly not able to do some normal little thing.

The “symptoms” of ALS onset are so dumb, you figure somebody’s got to be making this stuff up. Like, excessive yawning.

Q: “Hey Doc, I keep yawning. Am I dying?”
A: “Well, we all are, in the greater scheme of things, but in your case, I’d say you better put Forest Lawn on speed dial.”

Sneezing. Hiccups. Suddenly you can’t stand pizza. Or pepper. Or cinnamon. You laugh at the wrong things. Or cry over the stupidest things, only you just don’t cry: You keen, and wail, and sometimes shriek, and you can’t make yourself stop till it all winds down on its own and you collapse, exhausted.

But you feel great.

Whatever little issue you start with, it gets worse. If your speech is slurred, it slurs more, then you can’t swallow. If it’s turning a key, you find there are other “fine motor skills” you lose. My greatest triumphs are finding ways to turn keys (hint: knuckles) and use paperclips (hint: you do it backwards; hard to explain) without having to use gizmos yet. Legs, and arms, it’s the same progression. It starts little and doesn’t stop till it's big.

Still you feel great. Maybe a little pissed about it all, but in general, aside from the fact that your muscles are all dissolving into thin air, you feel pretty good. Some cramps, some muscles tightening up, some aches, etc., but nothing that Big Pharma can’t handle for a price. Except for the overall disease: That's beyond them.

So, my speech is gone, my swallowing is kaput, I have a lot of weakness in my trunk, arms and legs, my fingers are starting to bend all whichaways, except for the middle finger of my left hand, which remains proudly straight and tall. (Thank heavens I still have one vital means of communication left.) And I get short of breath and tire easily.. Probably a power wheelchair is looming in the near future, but I don’t want to think about that right now.

Because ... I still feel great! Why is this?

A few people with ALS say, “Why me?” Others say, “Why not me?” I say, “Why Lou Gehrig, for God’s sake, one of the nicest guys who ever lived? Why not Dick Cheney?”

But then, if I had to go around telling people I had Dick Cheney’s Disease, I probably wouldn’t feel great.