A Historian's Long View On Living With Lou Gehrig's
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."
By 2009, Judt had reached a stage where he was paralyzed from the neck down and using a respirator — which he calls "facial Tupperware" — to help him breathe. He also started writing a series of essays for The New York Review of Books about his illness. In the first, "Night," he describes the experience of losing control of his limbs:
"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 an interview on Fresh Air, Judt tells Terry Gross how he felt after his initial diagnosis.
"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."
Though many parts of his body no longer work, Judt — the author of 10 books including Postwar: A History of Europe Since 1945 and Reappraisals: Reflections on the Forgotten Twentieth Century — has continued to write, with the help of an assistant who transcribes his dictation.
"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."
His newest book, Ill Fares the Land, is a letter to young people about applying the past to the future — as well as a critique of what Judt calls the "deteriorating social contract" in the U.S. and Europe. Based on a lecture he gave at New York University, where he teaches, the book argues that "something is profoundly wrong with the way we live today."
"For 30 years," Judt writes, "we have made a virtue out of the pursuit of material self-interest. ... The materialistic and selfish quality of contemporary life is not inherent in the human condition. Much of what appears 'natural' today dates from the 1980s: the obsession with wealth-creation, the cult of privatization and the private sector, the growing disparities [between] rich and poor. And above all, the rhetoric which accompanies these: uncritical admiration for unfettered markets, disdain for the public sector, the delusion of endless growth."
Judt says he wrote the book to help young people make sense of the many changes in the world.
"It's about not forgetting the past. About having the courage to look at the present and see its faults without walking away in disgust or skepticism. ... I do think we're on the edge of a terrifying world, and that many young people know that but don't know how to talk about it."
On how living with ALS makes him feel:
"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."
On what he has learned from his ALS:
"Unlike cancer, which I've had in the past, or AIDS or some other major organic breakdown or disease, no one has any ideas how to fight it. So once you get past the thought that this is ridiculous — Why can't they do something? — you stop thinking of your body as the object to fight. ... I was a very controlling person. And for me, I did not like to be in the push car, to be in the stroller — because it meant my mother was in charge. ... And from very early on, I've hated depending on the kindness of others. And I'm learning to do so, and it's a very good sentimental education."
On his religious views:
"I don't believe in an afterlife. I don't believe in a single or multiple godhead. I respect people who do, but I don't believe it myself. But there's a big 'but' which enters in here. I am much more conscious than I ever was — for obvious reasons — on what it will mean to people left behind once I'm dead. It won't mean anything for me. But it will mean a lot to them. It's important to them — by which I mean my children or my wife or my very close friends — that some spirit of me is in a positive way present in their lives, in their heads, in their imaginations and so on. So [in] one curious way I've come to believe in the afterlife — as a place where I still have moral responsibilities, just as I do in this life — except that I can only exercise them before I get there. Once I get there, it will be too late. So, no God. No organized religion. But a developing sense that there's something bigger than the world we live in, including after we die, and we have responsibilities in that world."
On whether history matters to him as much:
"I think it does. It really does. I know that sounds funny, but I believe the reason is this: that all I ever wanted to do in life professionally [and] occupationally was teach history and read and write it. There are times when I've thought, 'My God, you're a dull man, Judt. When you were 13, you wanted the same thing, and now you're 62 and you still want it.' And the upside of that is that I get as angry at bad history writing, or the abuse of history for political purposes, as I ever did."
On losing control of one's body:
"I don't feel at all like I'm being buried alive. I feel like this body is the accidental case in which I lie for six hours at night thinking. And that really does work. I sleep more in the days than I do at night. So nothing has gotten better, but my capacity to live within it has grown hugely."
On what gives him pleasure:
"The thing about ALS is that there are only two things left, beyond your head, which still work. One is the reproductory apparatus, and one is the excretory apparatus. Then you keep those until you die. So you still get pleasure from sex, and you can still get pleasure from anything you can see, anything you can say — and although this may not last much longer, anything you can eat. ... Sometimes, I think, well, all the good things in life are still with me. Food. Sex. Videotapes. I've got it all — what's the problem?
On what he misses:
"The only thing that I miss that I can't reproduce is travel. I can pretty much do anything else, but I can't travel easily. And I miss that terribly, because I was a person who moved all the time. My history writing was based on what I saw in strange, exotic places rather than just reading books. ... So I miss that."
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