Fresh Air Interview: Historian Tony Judt On Living With ALS In 2008, historian Tony Judt was diagnosed with ALS, a progressive motor-neuron disease. For the past several months, Judt has been writing a series of essays for The New York Review of Books, charting life in what he calls a "progressive imprisonment without parole."

A Historian's Long View On Living With Lou Gehrig's

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This is FRESH AIR. I'm Terry Gross.

My guest, Tony Judt, has an intellectual mind that is now trapped in an immobile, failing body. In 2008, he was diagnosed with ALS, Lou Gehrig's disease, a neuromuscular illness. He describes ALS as progressive imprisonment without parole.

He says first you lose the use of a digit or two, then a limb, then and almost inevitably, all four. He's reached the point where he's effectively quadriplegic and needs a special apparatus in order to breathe. His voice is so weak, it requires an amplifier.

As a writer, Judt's subjects have been big, global. His book "Postwar: A History of Europe Since 1945," was a finalist for the Pulitzer Prize. His articles for the New York Review of Books, where he's a regular contributor, have covered such subjects as the problem of evil in post-war Europe, is the U.N. doomed, Europe versus America, and Israel, the alternative. But for the past few months, he's been writing very personal essays about his illness and his memories.

He also has a new book called "Ill Fares The Land," in which he offers a social Democrat's view of how to reconceive the role of government in America. Judt is a professor at New York University, where he is the founding director of the Remarque Institute, dedicated to the study of Europe. When we recorded our interview, he spoke to me from his home in Manhattan.

Tony Judt, welcome to FRESH AIR. Thank you for doing this. I know it takes a lot of effort for you to do an interview now, and I appreciate you making the effort to talk with us.

Since you're using a respirator, and we're likely to hear that, would you describe what that apparatus is for us so we can understand what you're doing now as you speak with us?

Mr. TONY JUDT (Author, "Ill Fares The Land"; Professor, Founding Director, Remarque Institute, New York University): Absolutely. By the way, thank you for inviting me on the program. The apparatus I use is merely a little pump, a plastic pump. It sits behind my neck and goes into my nose, and it decides how many breaths I should take per minute because my diaphragm is no longer strong enough to do that unaided.

So on one level, it's a very primitive machine: air in, air out, 60 times a minute or whatever it might be. But in another way, it's the controlling device to make sure I don't over- or under-breathe.

GROSS: And is it comfortable?

Mr. JUDT: Well, you have to think of it this way: If someone put a couple of plastic tubes up your nose and then a strap around your head, for the first two or three weeks, it would feel very uncomfortable. Eventually, you get so used to it that when you take it off to drink something, for example, it's as though something that you can't pin down is missing, and you become quite comfortable with it.

GROSS: I really like what you've been writing about having ALS, and it's like you're functioning as a reporter, telling us what you're experiencing and what you're thinking. One thing you haven't been doing is offering life lessons. Are people expecting life lessons from you?

Mr. JUDT: Gosh, I have no idea. I mean, I think my answer to that question is this: It's a bit like, if you'll allow me the analogy, which is a bit of a stretch, it's a bit like what Primo Levi wrote about his experience of Auschwitz, which is to say that however terrible it was, that whatever he did to survive it, he doesn't believe there's any larger lesson or moral story to be learned from it. Because when you are hit by something as bad as a concentration camp, you survive, and there's no lesson to be taught about surviving except how to do it.

In my case, I survive quite comfortably at one level because this is one of the worst diseases you can imagine, but it has no pain. So you have a lot of time in your untroubled head to think out of body, so to speak, about the reasons why the body doesn't work, the implications of being immobile for hours on end.

I think the only life experience that I have to offer out of this is something we all know in the abstract but don't experience in practice very much. That is that you can survive an awful lot of bad stuff, so long as your mind is intact. I'm afraid that's the only life experience I have to offer.

GROSS: Well, your mind is intact, and you have such a sharp, agile mind. Is it sometimes dangerous to turn your mind onto the subject of your body because your body is so fragile and nonfunctional now?

Mr. JUDT: I think it would be if I were a very depressed sort of personality type. But what it does to me is make me angry, angry not at anyone, of course, but just at fate. As long as I'm angry, I'm productive because I look at the body with some sense of detachment and say you've let me down. I can't do this. I can't do that.

And so I - what can I do? I think well, I can still boss people around. I can still write, admittedly with the help of an assistant, can still read. I can still eat, and I can still have very strong views. But what it does do is mean that you mustn't, mustn't, mustn't and I would give the same advice to anyone in a remotely similar disease 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.

GROSS: Did it take you a while to get to the point where you could stop fixating on I wish I could walk?

Mr. JUDT: Oh, yes. In the first, I would say, six months of this disease, from diagnosis to wheelchair, I spent fighting the reality of it. I think that's probably quite a common experience. I felt towards myself: Okay. 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 bits of you work, then you feel frustrated that they don't. But once nothing works, the frustration goes away. It's curious.

GROSS: Your wife is a dance critic.

Mr. JUDT: That's right.

GROSS: So her life is about watching perfectly tuned, strong, flexible bodies moving in ways that most normal human beings couldn't possibly conceive of moving. So can you enjoy watching dance now?

Mr. JUDT: Well, I can enjoy watching my wife.

(Soundbite of laughter)

Mr. JUDT: But I imagine that the answer is yes by extension. I think that what I've realized I mean, you're absolutely right. I live with someone who goes to the gym most days a week, who keeps incredibly fit, whose body can still do things that most normal people couldn't hope to do and so on, serves a reminder on a daily basis both of the attractions of skilled physicality and the fact that it's not available to me in any way at all. But I remember when we got married, we got married in 1993, and many of the guests were ballet dancers because of course, Jennifer knew many, and I remember thinking, you know, we can't dance in this wedding. I'll look like an idiot. I mean, it's just full of people who are world-famous ballet dancers.

And so I was hesitant to dance, and someone said, look, it's because you're just clunky Tony and they are professional ballet dancers. It doesn't matter. No one's going to laugh at you for not being them. Everyone's going to look at them and say boy, they're gorgeous. They won't even notice you.

And in a way, that's how it is now. I can't be physical in the way that my wife is physical and my kids are physical or most of my wife's friends are physical, but I so much can't be it that it doesn't hurt.

GROSS: You know, many people, when afflicted with a disabling disease, turn away from God. You were brought up in a secular, Jewish home.

Mr. JUDT: That's right.

GROSS: And you remained secular. So has being sick changed any of your personal views about religion?

Mr. JUDT: No, but the no is very straightforward. 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, of 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. And it's important for them by which I mean my children or my wife or my close friends that some spirit of me is in a positive way present in their lives, in their heads, in their imaginings 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'll 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 that we have responsibilities in that world.

GROSS: Are you talking about memory here, acting in a responsible way so that memories your loved one have of you will be good ones?

Mr. JUDT: Well, I'm certainly talking about that. That is absolutely true. But I think it's something slightly different. The risk with something like ALS, where you sit on the wheelchair all day where you're looked after by professional nurses, and it's way beyond anything your family could do, where you live in one space, (unintelligible), while other members of the family live their normal lives, and you encourage them to, the risk is not that you do mean or bad things. It's that they lose a sense of your presence, that you stop being omnipresent in their lives. And of course, to the extent that you are present, you are surrounded by nurses, equipment, a sort of smell of a hospital, so to speak.

So it seems to be my responsibility, particularly to my children, also to my wife and friends, is not to be Pollyanna and pretend everything's okay no one would take me seriously if I said that but it's to be as present in their lives now as I can be so that in years to come, they don't feel either guilty or bad at my having been left out of their lives, that they feel still a very strong not a memory of particular actions but a memory of a complete family rather than a broken one. That seems to be something I can do or try to do.

GROSS: Right. If you're just joining us, my guest is Tony Judt. He's a professor of history, European history, at NYU. He writes for the New York Review of Books, and he now has ALS, which is also called Lou Gehrig's disease. So he's basically paralyzed from the neck down. He's speaking to us from his home. He also needs to be breathing with the help of a respirator, which you might hear a little bit in the background. Let's take a short break here, and then we'll continue our conversation. This is FRESH AIR.

(Soundbite of music)

GROSS: If you're just joining us, my guest is Tony Judt. He's a professor of European history at NYU, and he writes for the New York Review of Books. And if you read the New York Review of Books, you probably know by now that he has ALS, Lou Gehrig's disease, which he's been writing about. He's basically paralyzed from the neck down and breathing with the help of a respirator.

But he has a new book. He gave a long lecture not long ago that he wrote with the help of somebody who he dictated to, and that lecture, also with the help of someone he used dictation with, has been expanded into a book, and the book is called "Ill Fares the Land."

Now, you've written extensively over the years about European history. You've written about the European left. Now that your body is immobile, and your physical world has shrunk, does history matter to you as much?

Mr. JUDT: Yes, I think it does. And that sounds funny, but it really does. I believe the reason is this: that all I ever wanted to do in life professionally, occupationally was teach history and read and write it.

You know, there are times I've thought: My God, you're a dull man, Judt. You know, since the age of 13, you've 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.

I think, however, probably, that I am more also not instead of but also focused on where we go now than I was 10 years ago. You know, 10 years ago, or whenever it was, I might be criticizing Clinton or Bush or Blair for some ridiculous policy, but it was very much in the sort of, the sense that I'm doing what I can do, which is write about politics in the public space.

But I think now, I'm more worried about the future. The past is always going to be a mess. It's going to be a mess because it was mess and because people are going to abuse it, get it wrong and so on. But I'm reasonably confident that with each generation of historians, we keep fighting hard to get it right again. But we could get the future very seriously wrong, and there it's much harder to get it right.

GROSS: Is that why your new book, "Ill Fares the Land," is, in a way, a letter to young people about applying the past to the future?

Mr. JUDT: Well, it's absolutely, deliberately a letter to young people, though it's not written down at all. And I would hope that a young person, aged 16, would want to read it. But 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.

It's about believing I think, really, I've been teaching for four years now. I'm encountering the first generation of young people in colleges and schools who really do not believe in the future, who don't think not just that things will get evidently and permanently better but who feel that something has gone very badly wrong that they can't quite put their finger on, but that is going to spoil the world that they're growing up into.

Whether it's climate change or political cynicism or overreaction or lack of reaction, to external challenges, whether it's terrorism or poverty, the sense that it's all got out of control, that they, the politicians and so on, media people, are neither doing anything nor telling us the truth. That sense seems to have pervaded the younger generation in ways that were not true in my experience.

Maybe the last time that might have been true was in the 1920s, where you had the combination of shock and anger from World War I, the beginnings of economic depression and the terrifying realization that there might very well be a World War II. I don't think we're on the edge of World War III or IV. But I do think that we are on the edge of a terrifying world. That's why I wrote the book.

GROSS: You compare that in your book to the attitude of young people in the '60s. You compare this sense of helplessness that you think a lot of young people have today to the '60s. And you say back in the era of self-assured, radical dogma, young people were far from uncertain. The characteristic tone of the '60s was that of overweening confidence. We knew just how to fix the world. It was this note of unmerited arrogance that partly accounts for the reactionary backlash that followed.

Do you feel that you shared in that sense of confidence and arrogance?

Mr. JUDT: Oh, absolutely. I don't think I would have felt comfortable writing that if I had been either born earlier or later or else something very different from everyone else because it would have sounded smug and a bit sanctimonious, an outsider, you know, dumping on the '60s and so on.

But in practice, that's my generation. I grew up with the idea that you only had to worry about ideas and change because things like jobs, things like physical security, could all be taken for granted. And that's, I think, a common, Western position in those years, so that we had the luxury of sitting in comfortable colleges or with parents who would support us if the time came to it, looking at the world and saying it's terrible, it's terrible, we must change everything that we know how.

There was the residue of Marxism, which was still very much alive, kicking in the '60s, but in the worst possible sense in that Marxists were now young people, with the exception of a few old people who thought that well, the West was a lost cause, liberalism was a fraud, the proletariat had disappeared. So let's focus on blacks or colonial, minority victims or someone outside ourselves. So we never looked hard at ourselves to ask what was wrong with our own society.

GROSS: So was there a particular dogma or philosophy that you felt you became that you feel now in retrospect that you were overzealous and overconfident about?

Mr. JUDT: Well, in my case, there were two. I think most of my contemporaries were bound up, to a greater or lesser extent, with what they thought of as Marxism, the revolutionary critique of capitalism, changing the world in China or Cambodia or Africa or wherever it might be.

I shared some of that coming out of an East European, self-taught, Jewish-Marxist background - both of my parents left school at 13, my grandfathers as well. But my particular form of ideological overinvestment came with Israel. I went to live on a kibbutz, and I'd idealized the world of collective, agrarian work, where everyone was equal, everyone contributed, that all this awful European intellectual stuff just fell away.

And I didn't realize at the time that I was completely blinded by this. I didn't see an Arab, didn't speak to one even though I lived in Israel, right next (unintelligible). I believed profoundly in Zionism in the way that my contemporaries believed profoundly in Maoism or Castroism or whatever. It took a while for me to break clear of that.

GROSS: Our interview with Tony Judt about his life and living with ALS will continue in the second half of the show. Judt is a professor at New York University, a contributor to the New York Review of Books and the author of the new book "Ill Fares the Land." I'm Terry Gross, and this is FRESH AIR.

(Soundbite of music)

GROSS: This is FRESH AIR. Im Terry Gross. We're going to continue the interview I recorded with historian Tony Judt, who was diagnosed in 2008 with ALS, Lou Gehrig's disease, a progressive neuro-muscular illness that has left him effectively quadriplegic. He requires an apparatus to breathe, which you'll hear in the background.

His illness hasnt stopped him from writing, with the help of dictation. He remains a frequent contributor to The New York Review of Books and has written a new book called "Ill Fares the Land." When we left off we were talking about how he lived in Israel in kibbutzim and was Zionist when he was a young man. But he later rethought many of his views about Israel

In the past few years (technical difficulty) think that Israel should actually be one state with the Palestinian territories and that in one state everybody should have an equal vote which really outraged a lot of your readers...

Mr. JUDT: Right.

GROSS: ...because it would mean Israel would cease to be a Jewish state and the majority voting population would be Palestinian. So what was it like for you to alienate so many of your readers to outrage? So many of your readers.

Mr. JUDT: Well, my wife, who is not Jewish, was amazed. She said that why can't people see how reasonable your essay was? I said look, what I did was break outside of a very big circle - the circle of Jews who believe in Israel and speaking as a Jew, stood outside it and said the emperor has no clothes. And that is not calculated to please people. But I would say, by the way, that although I made a lot of enemies, some of whom probably still see themselves as my enemy, they were nearly all in the United States.

My essay was republished all over the world. The essay on what was called "The Alternative to the Present Situation," in Israel it aroused a lot of political commentary but also a lot of approving commentary.

GROSS: Being sick now, how has your taste for being controversial been affected? I mean its nice when youre sick to be, you know, admired and comforted.

(Soundbite of laughter)

Mr. JUDT: Right. Well, of course, you know, I still admired and comforted by people either who never read The New York Review or else who dont see anything wrong with what I wrote. But youre absolutely right, people dont stop being angry with you if you say things that provoke them just because youre in a wheelchair. I think most of them dont know I am.

But I would like to backtrack, Terry, and say that I dont think I'm a controversialist. In fact, as I was thinking about this when someone asked me, I've only ever published four little essays in a lifetime of book writing and lecturing and teaching, just four little essays which touched controversially on painful bits of other people's anatomies, so to speak. Two of them are about Israel. One of them in 1979 was a critique of the silliness of modern history writings. That nearly lost me tenure at Berkeley. It certainly made me a few enemies there too. But apart from that and the essays on Israel, I have written thousands of pages of depressingly uncontroversial boring history books, or written about foreign policy or other stuff. I think if I'm controversial it's not because I set out to be. It's because I've never felt comfortable being part of someone else's mainstream community.

I'm not in the middle of the left, even though I'm on the left. I'm certainly not part of the Jewish world, even though I've never been ashamed of being Jewish. I'm actually rather proud of it. I've never been English, even though I grew up there. So I always feel myself a little bit marginal than the marginalia that I'm on - isn't affected by the illness. I would like everyone to love me who wouldnt. But you dont want to be loved for the wrong things.

GROSS: You write about having insomnia at night. That, you know, you have to basically lay still because you can't move, so once your nurse helps you into your bed, places you on your back, that's it for the night. Youre not moving.

Mr. JUDT: You got it. That's right.

GROSS: And, in fact, let me just quote something that you say about that. You write: In the early stages of my disease, my temptation to call out for help was almost irresistible. Every muscle felt in need of movement. Every inch of skin itched. My bladder found mysterious ways to refill itself in the night and thus, require relief. And in general, I felt a desperate need for the reassurance of light, company and the simple comforts of human intercourse.

Has that changed?

Mr. JUDT: The second part has not changed, that I still feel the need, as anyone would, but even more my position, for someone to come in and sit down and talk or to do something distracting or someone just to move my limbs around. And I think I will feel that until I die. But the first half which was, you know, can I stand this? What happens if I need to pee or, as you said, sort of have the muscle moved, I've got used to that. It's rather I mentally got used to the idea of being closeted in like a coffin or a box.

If you do that long enough, if you take control of your mind - I used to hate MRIs, those medical tests that they run you slowly through this machine within a very narrow tube. I used hate those because of the sensation of being buried alive. But I dont now feel at all buried alive. I feel as though this useless body is just the accidental case in which I lie in for six hours of night thinking and that really does work. I sleep more in the day than I do at night. So nothing has gotten better but my capacity to live within it has grown hugely. I would never have thought I could do it.

GROSS: Do you really lie awake for six hours at night like youre not sleeping at all?

Mr. JUDT: Well, it's more a question of dozing because I will go to bed as late as I can, then I will drop off. I'll wake up. I'll be conscious that fear of my (unintelligible) forcibly upon my life side is itching so that woke me up. So I will either sit and think about people or places I've been and known. Or if I'm feeling more energetic Ill lie there imaging the next essay I'll write, storing it up in little, actually little rooms of a Swiss chalet that I've imagined in my head. Then the next morning I mentally go back to chalet and retrieve from the kitchen drawer thought number one, from the dining room table thought number two, from the kids' bedroom thought number three and so on. And with luck I could reproduce the whole nighttime sequence of ideas. But I don't not sleep. I just drop off for a half an hour and then wake up and carry on.

GROSS: So is that how youve been writing now, storing up these thoughts in the middle of the night while you can't sleep?

Mr. JUDT: Absolutely.

GROSS: Weve talked a little bit about what you find most productive and what takes your mind off of your physical inability now. What gives you pleasure?

Mr. JUDT: Well, how risque and personal would you let me be?

GROSS: Give me a shot.

(Soundbite of laughter)

Mr. JUDT: Okay. Right. The thing about ALS is that there are only two things left beyond your head, which still work. One is the reproductive apparatus, then the other is the excretory apparatus, to be that blunt, 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. So it's sometimes I think, well, listen, all the good things in life are still with me: sex, food, videotapes. I've got it all. What's the problem? The only thing that I miss that I can't reproduce is travel.

I could pretty do anything else but I can't travel very easily. And I miss that terribly because I was a person who moved all the time, whose history writing was based on what I saw in strange exotic places rather than just reading books. In that sense I'm halfway towards being a journalist. And a journalist who can't move is a journalist who's unable to function in her job. So I miss that. But all the other pleasures to a greater or lesser extent are still open to me.

GROSS: You know, you had referred to this earlier, but you wrote: I should be at least mildly satisfied to know that I have found within myself the sort of survival mechanism that most normal people only read about in the kinds of natural disasters or isolation cells. And youre talking here about your ability to cope with the ALS.

Mr. JUDT: That's correct. Yeah.

GROSS: And your entrapment in your immobile body. Had you always asked yourself if you had that survival mechanism?

Mr. JUDT: No, I dont think I did. Because I think that that level of extreme -most of us would avoid the subject except very briefly sort of almost is a scratch - scratch an emotional itch to ask you, you know, could I do this, could I do that? Do you wake up in the morning going thank God I dont have to? Well, I think I knew in myself that I could do, as an exercise in willpower, anything that I wanted. But it would be about willpower rather than survival techniques or special skills other than which I have. But I do recall and it's kind of eerie thought, that when I first read Franz Kafka's "Metamorphosis," thinking for many years as a child, teenager, what would it be like to wake up in your bed as a cockroach?

What would you parents say? What would your wife say? Would they run away? Would they pretend it wasnt happening? How would you handle it? And between that and a sense I always had that Lou Gehrig's disease was something terrible I ought to know more about because, of course, I'm interested in baseball and my kids are, I had a kind of - not premonition but a sense that of all the diseases that I might end up with this would be the worst because it would be a challenge to my relationship to the outside world - could live in my head, that's easy. But dealing with people when youre in a wheelchair and a quadriplegic is very hard, because you spend your time putting them at ease, rather than they spending their time putting you at ease.

And so I think the answer to your question is that I had no conception of what was about to hit me. I wasnt prepared for it. It's a new stage in life. You wouldnt ask for it but you've got to face it and do something.

GROSS: So are you saying that before you had ALS you wondered what it would be like if you did have it?

Mr. JUDT: Yes. I used to.

GROSS: Why would you be wondering that?

Mr. JUDT: I dont know, Terry. I wish I could tell you. I think because it probably appealed - if that's the right word - directly to my sense of horror, at claustrophobia, immobility, loss of capacity and so on. There's no other disease that does that to you. I've had cancer. Cancer is not nice. They chop out a bit of your body to get rid of it. They radiate the hell out of you and so on. But actually, you can walk around. You can do everything you used to do just in a very reduced way for a while. ALS just gets worse and worse.

I remember thinking, what must it have been like for a man like Lou Gehrig -huge, healthy, talented guy - suddenly to be reduced to a muscle-less lump, dependent upon his wife to push him around in a wheelchair. I dont know why but I used to think a lot about that because I had no of idea what it really was like but now I do.

GROSS: When you think about the future now, what do you think about? What do you see?

Mr. JUDT: You mean my personal future?

GROSS: Mm-hmm.

Mr. JUDT: Well, I'm pretty clear in my own mind that when I can no longer talk I will have no interest in living, because if you can't communicate then you dont have a world outside of your head. While I use my head all the time, it's in order to communicate ideas, jokes, support, criticism, whatever it might be to friends, and colleagues and strangers, so no voice, no life. But I've still got a voice and its working perfectly well. And my kids I think need me. And I'm sure that's true of my wife as well as special friends and I could live for them quite easily so long as the situation doesnt get worse. I think a year ago I thought I'd be dead by now. But I seemed to have plateaued with nothing working except my head.

I see the future as something that could come crashing down very fast. Let me put it slightly by way of a comparison. Normal people, and I use the term very deliberately, by this not otherwise able situation - I'm disabled. I'm abnormal. Normal people dont think very much about the medium term future. They think only about the present, which is constantly changing for them or the very far future, which is just an abstraction. For me, its the other way around, my present never changes. So I dont really think about. But the medium term involves my death so I'm quite conscious of what is going to happen to me in about a year, maybe two years, who knows, whereas no one else I know thinks like that.

My sense is that I should pack into those two years or whatever they turn out to be as much of what I could usefully do as I can and I really dont care if that tires me out because I'm not keeping myself, as it were, for something. And usefully do means write, review, criticize, lecture, and above all, be there for my family. That all sounds very soppy and sentimental, but it's very simply true. I dont look in the future and say, oh my God, youre going to lose some other body part, then youre going to become even more of a vegetable than you are. I think outside myself and it's not heroic. It's just self-protective.

GROSS: But let me ask you, you said that you have no interest in living if you lose the capacity to speak. So what does that mean? Does that mean youve given your family a directive?

Mr. JUDT: No. In my practical terms what I've done long since is set out both in my will I had something called a proxy for health care, what is to be done with me under certain circumstances. That is to say if I went into the hospital for some minor operation but they had to put a tube down my throat and they couldnt take it out because it's sometimes very difficult with ALS, so they had to do a tracheostomy and pop a little tube down my neck from the outside to keep me going, I would very specifically say dont do it. And beyond that, if nothing goes wrong, I think I would probably want, as many other people in my situation I believe have wanted, to be allowed to die with minimal pain and discomfort. I dont know how that would affect my children. Weve only talked about it in great abstraction. They're age 15 and 13. But I know that my wife, who obviously finds the prospect horrific, understands why I think like that.

GROSS: Now here's the thing, you used to imagine what would happen if you got ALS and you found it unimaginable. You thought you couldnt bare it and you...

Mr. JUDT: Right.

GROSS: There's so much youve adjusted to and still found plenty to live for. So you dont really know for sure how you would feel when you...

Mr. JUDT: That's absolutely right.

GROSS: ...if you reached the point where couldnt speak anymore.

Mr. JUDT: Absolutely correct.

GROSS: You can only speculate.

Mr. JUDT: I can only speculate on the basis of observing what it is like for ALS patients after that point and speculating on my own likely mood at that point. But I will tell you this, that at the moment, for good or ill, I am in charge of the spaces I occupy. I write. I dictate. I talk. I advise, etcetera. But if I was sitting in an armchair with bits and pieces of rubber sticking out of me and my son came over and said, you know, would you like a banana? Wink once for yes, wink twice for no, I dont think the interest of the conversation would get me past the sense that this is horrible. It's horrible for me but above all, horrible for them. There are things worse than death.

One of the things that would be worse than death would be to impose on your family at a very vulnerable point in their lives the obligation to live with a semi-vegetable conditional, so it will look farther beyond the point of which they can get much value from listening to what he says. That seems to be rational. Whether I'll change my view, that I can no longer speak and they convince otherwise that there my, you know, being there is good in some ways, I dont know. I can only tell you how I feel at this point.

GROSS: Right. Tony Judt, I really want to thank you so much for talking with us. I appreciate it greatly.

Mr. JUDT: Well, thank you for having me.

GROSS: And I wish you the best. Thank you very much.

Mr. JUDT: Thank you very much.

GROSS: Tony Judt spoke to us from his home in Manhattan. He's a professor at NYU and founding director of its Remarque Institute. His new book is called "Ill Fares the Land." You can read the introduction on our Web site,, where you'll also find a link to a video of Judt talking about ALS and a link to his personal essay "Night," in The New York Review of Books.

Our thanks to audio engineer Robert Auld for recording Tony Judt at his home.

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