Tony Judt, a writer and scholar, writes about his personal experiences with the progression of ALS (also known as Lou Gehrig’s disease) for the New York Review of Books. He focuses in particular on how the onset of his disability has changed his nights:
I am then covered, my hands placed outside the blanket to afford me the illusion of mobility but wrapped nonetheless since—like the rest of me—they now suffer from a permanent sensation of cold. I am offered a final scratch on any of a dozen itchy spots from hairline to toe; the Bi-Pap breathing device in my nose is adjusted to a necessarily uncomfortable level of tightness to ensure that it does not slip in the night; my glasses are removed…and there I lie: trussed, myopic, and motionless like a modern-day mummy, alone in my corporeal prison, accompanied for the rest of the night only by my thoughts.
The inconveniences of physical disability can make for some long and uncomfortable nights. When I was a kid, I was always reluctant to wake my exhausted parents when I needed to be turned or otherwise repositioned. They never minded, of course, but I still didn’t like being the one to interrupt their sleep. Now, I’m spoiled; I have nurses who are available to reposition me without me ever completely waking up. And I usually have little trouble getting to sleep once I find my comfort sweet spot. For someone like Judt, who is still coping with a recently acquired disability and its attendant sense of loss, the nights are probably an entirely different experience that I can only vaguely appreciate.
Thanks to Ezra Klein for the tip.
