The Ice Bucket challenge raised millions for ALS research, not to mention awareness about the disease: the motor neuron disorder, also known as Lou Gehrig’s disease, affects thousands of Americans. It’s also served as a reminder about the work that Tony Judt did to convey what it was like to live with ALS, in his diary entries for the New York Review of Books. Judt died in August 2010. Here is a short collection of stories:
In effect, ALS constitutes progressive imprisonment without parole. First you lose the use of a digit or two; then a limb; then and almost inevitably, all four. The muscles of the torso decline into near torpor, a practical problem from the digestive point of view but also life-threatening, in that breathing becomes at first difficult and eventually impossible without external assistance in the form of a tube-and-pump apparatus. In the more extreme variants of the disease, associated with dysfunction of the upper motor neurons (the rest of the body is driven by the so-called lower motor neurons), swallowing, speaking, and even controlling the jaw and head become impossible. I do not (yet) suffer from this aspect of the disease, or else I could not dictate this text.
“This disease is best described as being in a prison cell that gets steadily smaller. You don’t know when it’s going to get so small it’s going to crush you to death. But you do know it’s going to happen, the only question is when. So the only question you have to ask yourself is, ‘What am I going to do.’”
“I use words to make sense of my life,” explains Judt. “Words can make the illness a subject I can master, and not one that one simply emotes over.” Longtime admirers believe Judt’s writing is stronger than it has ever been. “He has been able to do some of his best work,” says Robert Silvers, the editor of TheNew York Review of Books, who has assigned Judt more than 60 pieces over the years. “The pure intensity of effort and courage needed to arrive at the ability to do it is something difficult to imagine. It’s a great victory for him.”
When Tony was first diagnosed with ALS he knew he would die, soon. He knew it before any doctor told him; and he continued to know it even as we pursued every possible alternative explanation and cure. He knew it because it was happening to him every day: hands, arms, legs, breathing passed out of his control with terrifying speed. It was impossible to keep up, a dizzying and exhausting time of doctors and tests and daily crises; of emotions too large and consequential to bear; of bewilderment and determination; of anger, grief, desperation, and love.
At some point—it is hard to say exactly when, but it was about the time he began Thinking the Twentieth Century—we entered what we came to call the bubble. The bubble was a closed world, an alternate reality, a place that we lived in and peered out of. It had walls—transparent, filmy walls—but they were like one-way mirrors: we could see out, but no one could really see in, or at least that is how it felt from the inside. We knew our world was strange and apart, governed by the rules of illness and dying rather than the rules of life. I could pierce through, sometimes, by taking a walk and seeing the sky, but Tony could not—and increasingly would not.