Tony Judt is a professor, historian, author. He also can barely move. He writes:
"But one is also and always aware in this disease of the necessary normalcy of other people's lives: their need for exercise, entertainment, and sleep. And so my nights superficially resemble those of other people. I prepare for bed; I go to bed; I get up (or, rather, am got up). But the bit between is, like the disease itself, incommunicable." (More here: Night - The New York Review of Books.)
When you can't move, small gestures explode into deep meaning, annoyingly tinged with theatrical melodrama. How long has it been since I have touched another person's face with my fingers? If I were to do so, would I not be overwhelmed with emotion? When daily life (dressing, showering, getting fed) feels like an assembly line job, when I have an early curfew and never a day off from this routine, that small dose of "fun" (a university course in literature, a coffee with a friend) is monumental. It helps me to feel human. The normalcy--"exercise, entertainment, and sleep"--I will go to great lengths to taste it for a moment. It is an I-would-rather-die-than-lose-this kind of thing. And I will fight you to the death for these crumbs.
I am reminded of Samuel Beckett's "Krapp's last tape," how we cling to those few moments of beauty.
