In 2008, historian and public intellectual Tony Judt was diagnosed with Lou Gehrig’s disease. Two years later he was dead. In between he dictated the essays that make up this book.
The essays themselves are mostly reminiscences. They are intelligent and well-written, but mostly were only of modest interest to me. Frankly I’ll forget the bulk of them pretty quickly, whereas the parts of the book that are about his condition were much more powerful to me.
I might feel differently about the stories from his life if I had had more of a connection with him before reading this book. I’ve read a very small portion of his writings, but really he was not someone of significance to me.
But like I say, when he describes living with Lou Gehrig’s disease, it’s the kind of thing that’s hard to get out of your mind.
Basically the disease–at least as it affected him–gradually paralyzes you, without affecting your mind. So you lose the ability to walk, and your hands aren’t dexterous enough for things like writing or working a keyboard. Your voice gets weaker and weaker and then is gone. (He dictated these pieces when his voice was in bad shape but he could still be understood with difficulty.) You eventually cannot eat or drink or breathe on your own. In the end, unless you die first, you have virtually no ability to move any part of your body.
I think if you ask people whether it is more important to them as they get older that their mind or body functions at a high level, many will say the mind is what matters most, perhaps thinking of the nightmare of dementia. But reading this it’s clear to me that losing your bodily capacities to this extreme degree is the much bigger nightmare. If your mind goes to the extent that you regress to the mental level of an infant, that’s sad for the people around you who miss the person you used to be, but presumably you’re too unaware to be particularly hurt by it.
But when your body turns to stone like this, and you’re mind is still fully capable of experiencing and understanding everything that is happening to you, well, that’s got to be pretty close to hell.
I was going to equate it with being buried alive, but it’s sort of worse and sort of better. Your actual mobility is better in the coffin; you can squirm around and such. The final stages of this disease are more like being encased in cement. On the other hand, at least with the disease, you can still see and hear things and interact with people in a way that wouldn’t be possible if you were trapped underground in a coffin.
So it’s probably close to a wash. But think about that–it’s as bad or at least close to as bad as one of the worst tortures most people can imagine (being buried alive). And instead of lasting a few minutes or hours or however long it takes for the air to run out in a coffin, it lasts for months or years. (Maybe not the most extreme stage where you hardly can move at all–I think you die pretty quickly when you deteriorate that much–but at least the almost as bad stage that Judt writes about.)
He notes for instance that it’s impossible to shift when your body is in an uncomfortable position, or to scratch an itch. During the day, people are more likely to be present to turn you to guard against bedsores, and I suppose to scratch you and such if you’re able to communicate to them your needs, but he comments that at night when everyone turns in and you’re supposed to be sleeping, if you have some kind of discomfort like that, you better just accept it because it’s not going to change for the next few hours.
To occupy his mind, he uses an old memory trick he read about from centuries ago where you imagine a place, and then imagine yourself placing ideas and memories in it in certain places. So, maybe you imagine yourself writing a list of all your elementary school friends’ names you can remember on a piece of paper and putting it into the top left drawer of a desk in the study of the place you’ve constructed in your mind. Then when you want to remember that information, you imagine yourself going to the desk and retrieving it.
To me it doesn’t sound like the kind of thing that would be very effective, but he reports that it worked quite well for him, as he imagined storing all his mental data in a Swiss chalet he remembered staying at with his family as a child. Unable to write anymore, and only able to dictate part of the day with difficulty, he had to rely on this method to avoid losing the bulk of the thoughts that came to him as his mind continued exploring ideas and memories in his paralyzed state.
Judt is an undeniably erudite fellow, and there are plenty of enjoyable tidbits in the essays. (For example, his recollection of how awesome it was to spend time in Germany as a leftist 20 year old in 1968, and discover that German students–including the hot female ones–were convinced that having sex as much as possible was a key part of rebelling against their parents, capitalism and Nazism.)
But mostly what I take from the book is how awful his existence was toward the end, and how puzzling it is that someone wouldn’t prefer suicide to that. I mean, I can’t say for sure what I’d do in a situation I’ve never experienced, but my guess is things would have to get about 10%-20% as bad as he describes for me to prefer suicide. I just don’t have that tenacious refusal to let go of life regardless of how horrible it is, the way I gather pretty many people do.