I had to throw away a piece of soiled clothing this morning; well, I didn't actually have to throw it away, I chose to throw it away. Sometimes things are just not worth what you have to go through to save them, be it clothing or relationships or other things we think we own but actually own us.
Given the challenge of getting out of bed, getting into my wheelchair, making the wheelchair dash to the toilet, transferring from the chair, and finally getting my underwear off, it should come as no surprise that on occasion, despite Olympian efforts on my part, it is a race that I do not win. Sometimes you get the bear, sometimes the bear gets you. This morning it was a near run thing, not quite a tie, but clearly not a losing effort. This morning, after reviewing the damage, I just said "to hell with it" and decided to start fresh.
This is not a particularly bad thing; I have friends with perfectly good legs who have told me this thing has happened to them too, that a sudden onrush of physical need found them half way to the promised land. The only issue I have is the greater likelihood of this dance, such as it is, happening to me because of my dead legs and weakening arms. Yet even with this, it will not be the ultimate unfairness; there is more to come. I know this is true.
In the seminal book about this disease, "Tuesdays With Morrie", a book recommended by my friend Bobbi and given to me by my friend Anna, the protagonist, Morrie, talks with the writer, Mitch, about the challenges of ALS. He concludes by saying "This disease doesn't have me as long as I can still wipe my own ass." As the book progresses, and the disease progresses, this becomes a marker of progression. As Morrie's disease takes him to its irretrievable conclusion, as the last days approach, he says to Mitch, "It got me; I can't wipe my own ass."
This will come to me. One day I will look back on this most basic of cleaning activity with wishful longing; the risk of soiled clothing will be utterly unimportant. One day the race to the throne will simply be one of those memories, a thing of the past. One day I won't be able to wipe my own ass.
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