Tony Judt, the intellectual historian, passed away on Sunday of ALS. Judt wrote a series of poignant essays about living with ALS for the New York Review of Books.
This cockroach-like existence is cumulatively intolerable even though on any given night it is perfectly manageable. “Cockroach” is of course an allusion to Kafka’s Metamorphosis, in which the protagonist wakes up one morning to discover that he has been transformed into an insect. The point of the story is as much the responses and incomprehension of his family as it is the account of his own sensations, and it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims. Helplessness is humiliating even in a passing crisis—imagine or recall some occasion when you have fallen down or otherwise required physical assistance from strangers. Imagine the mind’s response to the knowledge that the peculiarly humiliating helplessness of ALS is a life sentence (we speak blithely of death sentences in this connection, but actually the latter would be a relief).
Morning brings some respite, though it says something about the lonely journey through the night that the prospect of being transferred to a wheelchair for the rest of the day should raise one’s spirits! Having something to do, in my case something purely cerebral and verbal, is a salutary diversion—if only in the almost literal sense of providing an occasion to communicate with the outside world and express in words, often angry words, the bottled-up irritations and frustrations of physical inanition.
The best way to survive the night would be to treat it like the day. If I could find people who had nothing better to do than talk to me all night about something sufficiently diverting to keep us both awake, I would search them out. 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.
I suppose I should be at least mildly satisfied to know that I have found within myself the sort of survival mechanism that most normal people only read about in accounts of natural disasters or isolation cells. And it is true that this disease has its enabling dimension: thanks to my inability to take notes or prepare them, my memory—already quite good—has improved considerably, with the help of techniques adapted from the “memory palace” so intriguingly depicted by Jonathan Spence. But the satisfactions of compensation are notoriously fleeting. There is no saving grace in being confined to an iron suit, cold and unforgiving. The pleasures of mental agility are much overstated, inevitably—as it now appears to me—by those not exclusively dependent upon them. Much the same can be said of well-meaning encouragements to find nonphysical compensations for physical inadequacy. That way lies futility. Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them.
May he rest in peace.