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

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."

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Other segments from the episode on March 29, 2010

Fresh Air with Terry Gross, March 29, 2010: Interview with Tony Judt; Review of Dana Hall's album "Into the Light."

Transcript

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

TERRY GROSS, host:

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. I’m 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 hasn’t 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 it’s nice when you’re 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 don’t see anything
wrong with what I wrote. But you’re absolutely right, people don’t stop being
angry with you if you say things that provoke them just because you’re in a
wheelchair. I think most of them don’t know I am.

But I would like to backtrack, Terry, and say that I don’t 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 wouldn’t. But you don’t 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. You’re 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 don’t 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 you’re 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 I’ll 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 you’ve been writing now, storing up these thoughts in the
middle of the night while you can't sleep?

Mr. JUDT: Absolutely.

GROSS: We’ve 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 you’re 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 don’t 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 don’t 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 wasn’t 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 you’re 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 wasn’t prepared for it. It's a new stage in life. You
wouldn’t 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 don’t 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 don’t 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
don’t 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 it’s 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 doesn’t 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 don’t 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, it’s the other way
around, my present never changes. So I don’t 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 don’t 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 don’t look in the future and say, oh my God, you’re going to
lose some other body part, then you’re 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 you’ve 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
couldn’t 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 don’t 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 don’t know how that would affect my children. We’ve 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 couldn’t bare it and you...

Mr. JUDT: Right.

GROSS: There's so much you’ve adjusted to and still found plenty to live for.
So you don’t really know for sure how you would feel when you...

Mr. JUDT: That's absolutely right.

GROSS: ...if you reached the point where couldn’t 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 don’t 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
don’t 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,
freshair.npr.org, 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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Drummer Dana Hall Goes 'Into The Light'

TERRY GROSS, host:

Drummer Dana Hall lives in Chicago, where jazz critic Kevin Whitehead first
heard and began raving about his playing with the Chicago Jazz Ensemble a few
years ago. Hall now directs that repertory orchestra while playing in several
other bands and leading his own quintet. Hall's first album as a leader is now
out. Kevin is still raving about him.

(Soundbite of song, "Jabali")

KEVIN WHITEHEAD: Dana Hall's "Jabali," a salute to former drummer Billy Hart.
Hall doesn't often hog the spotlight on his debut album, "Into the Light." He
doesn't need to. He plays more stuff behind other musicians than some drummers
do in a solo. Hall stays busy back there, exhorting and swinging the band,
playing contrary rhythms, shifting his patterns and punctuating everybody
else's solos, like this one from saxophonist Tim Warfield.

(Soundbite of song, "I Have a Dream")

WHITEHEAD: Herbie Hancock's "I Have a Dream," played more or less in the style
of the Miles Davis quintet, with Tony Williams exploding the drums. Dana Hall's
quintet is talent-heavy, too. Most of the players have worked together for
years in his and trumpeter Terell Stafford's bands. Shared experience means you
don't just get great soloists. You get ones used to feeding off each other's
ideas. On "Conversion Song," Stafford plays punchy trumpet, recalling fellow
Philadelphian Lee Morgan. Pianist Bruce Barth spins his solo off the end of the
trumpeter's, improvising on a theme handed off to him.

(Soundbite of song, "Conversion Song")

WHITEHEAD: These state-of-the-art swingers work through possibilities jazz
musicians raised decades ago, but they don't sound stale. Even classic jazz has
contemporary influences. On Dana Hall's tune "Into the Light," electronics
shade the sound of Terrell Stafford's trumpet, but the more modern touch is the
drummer's ferocious, post-hip-hop funk beat.

(Soundbite of song, "Into the Light")

WHITEHEAD: Drummers who lay on the thunder like Dana Hall sometimes get accused
of having big egos, but his business is less about going it alone than
connecting - of binding all the musicians' parts together in a complex matrix
of rhythm and melody. Playing tunes by bandmates Tim Warfield and bassist
Rodney Whitaker alongside his own helps keep the troops happy. If there's a
selfish aspect to this music, it's that the players do sound like they're
having a really good time.

(Soundbite of music)

GROSS: Kevin Whitehead is a jazz columnist for eMusic.com. He reviewed "Into
the Light," the new CD by drummer Dana Hall on the Origin label. You can hear
two tracks on our Web site, freshair.npr.org, where you can also download
podcasts of our show.
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Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.

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