There is a cute little girl in our building who kitty sits for us when we are out of town. She’s thirteen now, so she’s not such a little girl anymore. But she’s a sweet kid, thoughtful and bright. Her parents are cool too–the old man is a professor. They are in their mid-fifties I’d guess, hip, and know a ton about music. Last year, the mother had a stroke, or at least they initially thought it was a stroke. Turns out she has A.L.S.
At first, her speech was slurred. Now, she can’t talk anymore. Instead, she types into a small laptop computer that speaks for her. But she is deteriorating and there is no telling how long she has to live–two years maybe?
My wife Emily has crohn’s and has become something of an expert at dealing with insurance companies. She has gone downstairs to our neighbhors apartment and spent hours sorting through their insurance complications. It makes her feel good to help, to be of some use, to put her own long, often exasperating experiences to work.
I’ve gone down a few times too but it’s almost too painful to bear. I saw the parents on the subway a few weeks ago and buried my head in my book. They didn’t notice me and they got off a few stops later, far from our usual stop. I felt ashamed, like a coward.
The thought of the husband losing his wife, of the girl losing her mother, is overwhelming. When I see them, I am bright and cheery, but look for a way to make the encounters as brief as possible.
A.L.S. is cruel fate for anyone. Which is why I felt a measure of comfort reading George Vecsey’s column in the Times today.
Baseball is doing a good thing.
