In 2008, historian Tony Judt was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. ALS is a progressive motor-neuron disease that causes the central nervous system to degenerate. Over time, patients lose the ability to move their bodies, but retain full control over their minds. Judt describes the effects of the disease as “progressive imprisonment without parole.”
“The first six months of this disease, from diagnosis to wheelchair, I spent fighting the reality of it,” he says. “And I think that’s probably a common experience. I thought towards myself, ‘OK. I’ve still got legs, even though the hands are gone.’ Then one leg would go, and I’d think, ‘Well, I’ve got one leg left.’ And so as long as you can imagine, however unrealistically, a future in which only bits of you work, then you feel frustrated [that] they don’t. But once nothing does, the frustration goes away.”
“I’m productive,” he says, “because I look at the body with some sense of detachment. ‘You’ve let me down. I can’t do this. I can’t do that.’ And so I think, ‘Well, what can I do? I can still boss people around. I can still write. I can still read. I can still eat, and I can still have very strong views.”
You mustn’t focus on what you can’t do. If you sit around and think, ‘I wish I could walk,’ then you’ll just be miserable. But if you sit and turn around and think, ‘What’s the next piece I’m going to write?’ then you may not be happy, but you certainly won’t wallow in misery. So it’s an active choice every day to renew my interest in something that my head can do, so I don’t think about the body.