The training director's advice - that our most crucial learning would come from our direct experience with patients - was totally correct. But if he'd read accounts of the experience of illness like "Night" by Tony Judt in the January 14 New York Review of Books, he would have been more positive about reading as well as listening.
Tony Judt is a brilliant historian and director of the Remarque Institute at New York University. Eighteen months ago he was diagnosed with amyotrophic lateral sclerosis (ALS - Lou Gehrig's disease). In "Night" he starts teaching us about the experience of ALS. Apparently other installments will follow.
Here are some excerpts that were especially powerful for me. My reactions to what Judt tells us are in italics:
I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease...What is distinctive about ALS...is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration.The combination of pain-free clarity of perception and steady loss of function is terrifying. Judt's spare, direct prose gives us a taste of the horror of what we see.
Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment's reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).When I read this I recalled how much torment it was in childhood to be asked to "keep still," and being asked "do you have ants in your pants" when I squirmed in my seat in primary school. It wouldn't have occurred to me how ostensibly tiny deprivations like the ones Judt cites could be "psychologically close to intolerable," but when he says it, we get it.
During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs—since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.
Ask yourself how often you move in the night. I don't mean change location altogether (e.g., to go to the bathroom, though that too): merely how often you shift a hand, a foot; how frequently you scratch assorted body parts before dropping off; how unselfconsciously you alter position very slightly to find the most comfortable one. Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life.Here Judt, a teacher, pushes the class (us, the readers) into a scary thought experiment - "imagine for a moment..." Probably most of us have experienced at least occasional insomnia. Sleep difficulties are one of the commonest complaints in medical practice. But being awake in the dark, unable to move - that's insomnia writ super large!
...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...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.It's hard to enter into the terrifying experiences Judt makes so real for us. That can lead us into expressions of "support" and "hope" that are meant for ourselves. Sometimes people need to be listened to and agreed with - what they're going through "has no saving grace."
(On October 19, 2009, Tony Judt lectured at the Remarque Institue on "What is Living and What is Dead in Social Democracy." At the start of his lecture he spoke briefly about ALS. The video gives a visual image that adds to the power of his essay.)