Tony Judt and ALS

Tony Judt died on Friday at the age of 62 of the neural muscular disease ALS. He described ALS as progressive imprisonment without parole. First, you lose the use of a digit or two, then one limb, then all four.

I heard his interview rebroadcast on Fresh Air and I was inspired by his eloquence and his attitude when faced with a chronic disease. Here are some excerpts from the interview (highlights are mine).

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 why, the reasons why the body doesn't work, the implications of being immobile for hours on end.
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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. ...

Then in time, 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 any 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. And 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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The risk with something like ALS, ... the risk is not that you do mean or bad things. It's that they (your family) lose a sense of your presence, that you stop being omnipresent in their lives. ...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.
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...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 your 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 relationships with the outside world - could live in my head, that's easy, but dealing with people when you're in a wheelchair and a quadriplegic it's 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.

Listen to the whole interview on Fresh Air from WHYY