NPR Fresh Air: A Historian’s Long View On Living With Lou Gehrig’s

RA Guy Community News 1 Comment

March 29, 2010

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.

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Comments 1

  1. Jill

    His words are imortant ones to remember. My father died from ALS and I have rheumatoid arthritis. When he was going through his struggles I could never feel sorry for myself because I only had to look and see what he dealt with every day to realize that there is always someone worse off than you. Even with him, we could read the newspaper and learn about someone that had died suddenly and didn’t get the special time we were given to say goodbye. It’s often difficult but it always helps when I’m mindful of all I have instead of thinking negatively about the hand I’ve been dealt.

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