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Date Posted: 05:39:48 08/21/05 Sun
Author: Seth Carey
Author Host/IP: 126.96.36.199
Subject: The Absolute Worst Thing
The Absolute Worst Thing or Fun with ALS
By Seth Carey
Ever since kindergarten, I'd wait at the school bus stop with my best friend Chris Kelly. To kill the time we'd invent games. 'The absolute worst thing' was a real favorite. We'd dream up the worst situations we could think of and progressively build upon them until they were as dreadful as possible.
No matter how we tried to outdo it, the absolute worst we could come up with was always trumped by one particular scenario:
"What if you could still think and feel but you weren't able to move?"
We agreed-this was The Absolute Worst Thing.
That was about thirty years ago, and I still think it's the absolute worst thing.
I was diagnosed with Lou Gehrig's Disease (ALS) December 14, 2001-no problem remembering that date. The doctors who diagnosed me were careful to explain that this meant a death sentence.
When they suggested one more blood test, since "maybe you're lucky and you just have AIDS," I knew that the absolute worst thing was for real, and it was happening to me. In the last two years seven months and eight days, this disease I'd never heard of has been busy kicking my ass.
I've gathered way too much info on ALS (all of it depressing) and can rattle on about it. It boils down to this: ALS kills motor neurons, the signal pathways to voluntary muscles. Those are what you use for things you want to do like petting the cat, rolling over in bed, holding your head up. . . you get the idea.
Those muscles are also used in breathing, something I regularly do, and very much hope to keep on doing.
I have bulbar onset ALS, whose symptoms include uncontrollable outbursts of laughter and weeping, sometimes both at once. Fortunately for me, most of my outbursts have been in the more socially acceptable form of laughter. The slightest humorous thought, or the dreaded heart-tug of a Spielberg moment, so popular in phone commercials, and I wave goodbye to self-composure. It makes it tough to act macho. It's not as bad as it was initially but I still cry in my oatmeal most mornings.
I miss being able to do everything I used to do. I thought I understood what I'd miss and could sort of stockpile experiences to keep from missing them too bad. It worked with some things better than others.
I knew that I'd miss fishing, so I did a butt-load of it. But how could I stock up on hugging Shannon?
We have three cats I can no longer pet. Shannon, my wife, sometimes takes my hand and runs it over the fur of one that's nearby. The cats start purring and, usually, I end up sobbing.
Mosquito season has now become a form of torture. I watch them land on me. They walk about a bit searching for just the right spot to drill. I try to explain to whoever is around, what's happening. I'm hard to understand in the best circumstances, but when you add frustration and impending doom, I'm reduced to undecipherable howls. They only know I'm upset, but not why.
I know all too well, there's nothing funny about ALS. It's stripped me of the use of my body and voice. It has been an endless source of frustration and humiliation.
But there's enough depressing crap written about ALS. I want people to understand that being diagnosed with it doesn't mean you need to lose your personality or your sense of humor. Since there's nothing to treat what ails me, I self-medicate by joking about it. I've found I rely on my sense of humor to get me through. Laughter and denial are the tools that make living with this nightmare possible.
I credit the many hours I spent stuck in highway traffic with my approach to dealing with ALS.
Eventually I came to realize that when you find yourself stuck in traffic, you are faced with a choice. You can get all mad, giving the finger to everyone, and bang on the dashboard; or- you put on your favorite CD, rummage around for a roach, and sing along with the guitar solo.
Either way you're going to end up at the same place, an hour late.
Oh, by the way- I'm still the same Cranky Yankee inside. Being sick hasn't changed that.
Broadcast July 29, 2004
Seth Carey lives in West Falmouth with his wife Shannon.
Listen to the Absolute Worst Thing
This essay took several weeks to finish. Seth Carey, who is unable to use a keyboard, writes with an unfathomably complicated program on the computer called Dasher. It allows him to aim at a bombardment of letters to try and form words with his computer mouse taped to his hand, since he can't click on anything. To a novice, it looks like one of those frustrating games where the target keeps changing. A paragraph takes hours. The piece was read by Seth's uncle, Brian Carey.
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