"Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them."
December 29, 2009 9:46 PM   Subscribe

"This cockroach-like existence is cumulatively intolerable even though on any given night it is perfectly manageable." Tony Judt, in the advanced stages of ALS (aka motor neurone disease) begins a series of short pieces for the New York Review of Books with a reflection on how he spends his unmoving nights.
posted by holgate (41 comments total) 37 users marked this as a favorite
That's one of the more horrible and terrifying things I have ever read. My heart goes out to the man.
posted by Pope Guilty at 9:57 PM on December 29, 2009 [1 favorite]

Thanks for posting this. Hearing stories like this makes me extremely grateful for my health. I can only imagine how terrifying ALS must be. No one deserves to go through that.

This reminds me of the book "The Diving Bell and the Butterfly" by Jean-Dominique Bauby, who suffered from locked-in syndrome after surviving a major stroke, and could communicate only by blinking one eye.
posted by Lobster Garden at 10:02 PM on December 29, 2009 [1 favorite]

If I knew that I had ALS, I would write my will, say my goodbyes and start hoarding narcotics.
posted by Avenger at 10:07 PM on December 29, 2009 [11 favorites]

Understated, beautifully expressed, and absolutely horrifying.

This sort of stuff makes me want to find God just so I can kick him in the nuts.
posted by killdevil at 10:20 PM on December 29, 2009 [6 favorites]

holgate: ALS (aka motor neurone disease)

A.K.A. Lou Gehrig's disease.
posted by paisley henosis at 10:23 PM on December 29, 2009 [2 favorites]

Thanks so much for posting this; I had no idea of Tony Judt's condition when I sat down to watch his October lecture "What Is Living and What Is Dead in Social Democracy?" at the Remarque Institute. I was so shocked and my heart ached for him.

The transcript of the lecture is reprinted here, in the NY Review of Books,

but I would really recommend watching his full lecture here (in either Quicktime or RealMedia format).
posted by Auden at 10:25 PM on December 29, 2009 [4 favorites]

Not being able to scratch an itch or stretch a knee... it's possible to imagine meditating through that. But the respirator! What indignity, what constant terror.
posted by Rat Spatula at 10:29 PM on December 29, 2009

Oh my god. I love sleeping, and drifting of to asleep at night and slowly waking up in the morning are the favorite parts of my day. To have your own body betray you like this, so much so that sleep becomes intolerable, that's just horrifying. I can't even begin to imagine how he can be so rational about his condition.

I'm going to crawl into bed and hug my stuffed animals now.
posted by pecknpah at 10:35 PM on December 29, 2009

At least his command of the English language has not left him. That was a beautiful piece of writing and scarier than any movie or book I have ever experienced. What really got me was this:

In the more extreme variants of the disease, associated with dysfunction of the upper motor neurons (the rest of the body is driven by the so-called lower motor neurons), swallowing, speaking, and even controlling the jaw and head become impossible. I do not (yet) suffer from this aspect of the disease, or else I could not dictate this text. [Emphasis mine]

I could not and do not want to imagine anticipating the degeneration of my own body.
posted by battlebison at 10:40 PM on December 29, 2009

I had no idea he suffered from this affliction. Judt's Postwar is phenomenal, one of the best books I've read in the last 10 years.
posted by stargell at 11:01 PM on December 29, 2009

Oh that was chilling. I wish there were a way he could control a web browser and chat window during the night, in order to communicate with people in different time zones.
posted by mecran01 at 11:10 PM on December 29, 2009

Somehow it seems there should be a group where people, for one night a month, volunteer to sit with a person like Tony Judt for the evening, to chat with him when he wants to chat or just sit there and do something else when he chooses to sleep. Of course, they probably couldn't do much more than scratch the occasional itch if they're not trained/certified nurses, but surely people in Tony's situation shouldn't have to be left alone every night of the year.
posted by chimaera at 11:11 PM on December 29, 2009 [3 favorites]

There's a heck of a thing to read in the middle of the night when I can't sleep . . .
posted by Peach at 11:18 PM on December 29, 2009

I really appreciate his writing this so honestly.
posted by setanor at 11:49 PM on December 29, 2009

If I knew that I had ALS, I would write my will, say my goodbyes and start hoarding narcotics.

You didn't even have to say that. He said this himself:

(we speak blithely of death sentences in this connection, but actually the latter would be a relief).

I wonder if he thinks back on the early days of his diagnosis and wishes that he'd been proactive instead of waiting for the situation to become intolerable. What can you do when you're trapped in your own body? Ask a loved one to risk prison and end the misery? No, just wait out the rest of your natural life plus whatever the machines can add to it against your will.

Whenever I hear a story like this I take the opportunity to say to everyone within earshot that I'D RATHER BE DEAD THAN THAT, AND WOULD PREFER THAT IT COULD BE ARRANGED NO MATTER HOW IT HAS TO BE DONE. Just that there's no doubt. (Though lack of doubt doesn't seem to do Judt much good.)
posted by Epenthesis at 11:50 PM on December 29, 2009 [1 favorite]

The things we take for granted.
posted by bwg at 11:51 PM on December 29, 2009 [1 favorite]

A friend has ALS, and it is a difficult disease.

Even the diagnosis is hard. ALS is not well understood. In terms of diagnosis, it's a collection of symptoms that is not explained by other illnesses. To arrive at an ALS diagnosis, you must first rule out: stroke, MS, other motor neurone diseases (like OPCA), and probably more.

Each one of these is better than ALS, so as each is ruled out, your prognosis worsens. And this plays out over a year, getting worse and worse news while your limbs shut down. The diagnosis can involve many tests. One of the key diagnostics involves measuring nerve function by electrically shocking the patient repeatedly. My friend says it was like being tasered over and over again.

Here are some sites I've found helpful for understanding ALS: MedLinePlus ALS page, Amyotrophic Lateral Sclerosis Fact Sheet (Nat'l Inst. of Neurological Disorders and Stroke), ALS Functional Rating Scale, and ALS Clinical Trials.

Also, ALS Forums is the best discussion site I've found on the topic.
posted by zippy at 12:36 AM on December 30, 2009 [7 favorites]

The body is a prison.
posted by Blazecock Pileon at 1:32 AM on December 30, 2009 [1 favorite]

Christ. Terrifying, heart-breaking, courageous.

I only hope I have the strength to bear if ever confronted by something so monumental. I doubt it.
posted by smoke at 3:26 AM on December 30, 2009

A friend of mine died of ALS earlier this year; it was tough not only on him but his family. They got some good support from the state chapter of The ALS Association and I made a donation in his memory. If anyone wants a last-minute charitable contribution for the year they are a worthwhile cause.
posted by TedW at 5:16 AM on December 30, 2009 [2 favorites]

It seems to me that cockroaches can scuttle around, whereas this guy cannot, making what he's going through actually much worse.
posted by dunkadunc at 5:38 AM on December 30, 2009


To keep the man company in the evenings seems like it would be a privilege, not a chore. I quote from stargell's link:
Tony Judt has splendid qualifications. An authority on modern French intellectual history, he is director of the Remarque Institute in New York, entrusted with the task of explaining Europe to America. He has also involved himself in current international relations, notably in the former Yugoslavia and the Middle East. He is a principled critic of the Iraq war.
I'm not familiar with his work, but I'll have a look now.

Anyways, the article hit me square in some of my most primal fears. It's impact was not lessened by the understated writing style.
posted by Harald74 at 5:41 AM on December 30, 2009 [1 favorite]

It strikes me that our hopes and fears are much greater in our imagination than how they actually play out.

When we hope for something and imagine how it will change our life, there is a momentary joy and celebration, true, but soon we find ourselves returning to our routines and transplanting those dreams into new desires. Likewise, we imagine that disasters will destroy us and we will be unable to cope. But, after a period of grieving, we somehow do cope. And we go on living.
posted by vacapinta at 6:27 AM on December 30, 2009 [1 favorite]

There is hopefully some heartening, though early, research going on in the battle against ALS. I read a heartbreaking article a couple years ago regarding the University of Virginia's struggles in balancing human testing ethics board battles with patients who were willing to risk almost anything for a cure. Terminally ill patients were finally allowed to continue taking the drug under the FDA's "compassionate use" policy, although apparently all of the original patients have since died. Such an awful thing to consider.

Searching for that article again, I found another article which seems to suggest that trials are going well, although the principal researcher is leaving the University to work full time on Parkinson's research at Virginia Commonwealth University.
posted by This Guy at 6:32 AM on December 30, 2009

In a very, very sad way we are fortunate to have a writer and thinker of Tony Judts caliber to take on this horror. After a stellar life time of explaining the complexities of history, Jundt can dig deep into his craft and give an account of a personal agony and triumph many face, but few can fully articulate.

I have read Jundt for years - his "Post War" is a classic - and this has come as a shock. I had no idea.

Thanks for posting this.
posted by Aetius Romulous at 6:41 AM on December 30, 2009

I have only recently stumbled upon the mind of Tony Judt. I was just passing by the History section of %BIGNAMEBOOKSTORE% at %SPRAWLINGSUBURBANMALL% when the cover photo stopped me in my tracks.

I read just a few pages in... and then just realized how necessary such a mind was in this world. I immediately took my copy of "Reappraisals" to the counter. I stayed there for a little while... got a coffee and dug myself in.

"Reappraisals" is good. I would say a necessary read.

I really hope for the best for Mr. Judt. Hell, I'd gladly listen to him until he could no longer speak... record and document everything. His writings are such a critical look back into who and what we were... and gives us some sense of where we should be heading.
posted by PROD_TPSL at 7:33 AM on December 30, 2009

First, I want to say thank you for sharing this. Having coped with (dissimilar) tragedy in 2008 and 2009, this piece was inspirational and heartbreaking.

Likewise, we imagine that disasters will destroy us and we will be unable to cope. But, after a period of grieving, we somehow do cope. And we go on living.

I thought this repeatedly, when I read above some comments to the effect of "I would kill myself if this happened to me." I had typed out a long explanation of my personal feelings about this and my own experiences, but I am not going to bring that here. This article is one I should save, and re-read when I need a reminder about lessons of dignity, compassion and humanity, i.e., every day.
posted by bunnycup at 7:41 AM on December 30, 2009

Ok so what is stopping those of us in NYC from offering to spend a night a week with this guy? How do we contact him? I would definitely do it and I know friends who would. Maybe I should start a meta?
posted by spicynuts at 8:10 AM on December 30, 2009 [6 favorites]

This disease killed my father. Its horror is very particular. Your body withers away while you still live within it, while your mind remains exactly what it always was, allowing you to fully appreciate what is being stolen.

Part of the cruelty of the disease is its pace. It races and plateaus, then races again. Your body erodes rapidly, you lose more and more ability...and then the decay stops. How long it waits before it attacks again and robs you of even more is a question no one can answer. You simply know it will, someday. A resumption is inevitable.

The cruelest cases are those where the disease reduces you to a complete, utter prisoner of an immobile body, then halts for years. The only mercy the disease ever showed my father was that the final indignities did not drag on for long -- his last decline had the decency to continue to his death rather than halt for a year or five to torment him still more.
posted by Harvey Jerkwater at 8:22 AM on December 30, 2009

A.K.A. Lou Gehrig's disease.

Yes, but ALS / Lou Gehrig's isn't as common a term in the UK (example) and while Judt has lived in the US for a while, he's British, and I thought it worth the gloss.

posted by holgate at 8:48 AM on December 30, 2009

The best way to survive the night would be to treat it like the day. If I could find people who had nothing better to do than talk to me all night about something sufficiently diverting to keep us both awake, I would search them out.

Does anyone else think that resources should be developed to enable such people use to Internet-capable tools? Not that this would be a panacea for sufferers but the remote company of others seems to be something Judt desires.

While super medical scientists are at it, can an interface be developed to connect Judt to physical devices by which he might move his body?
posted by mistersquid at 8:53 AM on December 30, 2009

Does anyone else think that resources should be developed to enable such people use to Internet-capable tools?

There are organizations working on it, and amazing products like Eye-Can.

I'd be delighted to chip in to a MeFi effort to get Judt, whose work I admire tremendously, any assistive devices he might need. Also $5 for a membership here!
posted by Sidhedevil at 10:02 AM on December 30, 2009

vacapinta: "And we go on living."

It doesn't seem like Judt has a choice, which makes that a pretty crummy consolation.
posted by Kadin2048 at 10:27 AM on December 30, 2009 [1 favorite]

My father began speaking with a slur a few autumns ago. We all though he may have had a mild stroke. As the slur became more pronounced, and he began to have trouble swallowing, he continued his trips to the doctors, the neurologists, the MRI. Through a process of elimination, the neurologist informed him that he had ALS.

"Should I stop smoking?" A lifelong smoker, he asked the doctor, hoping that it might slow the process. "Smoking isn't what's going to kill you," replied the doctor, a 'smoke em while you can' sentiment. It wasn't long before my father was unable to smoke altogether. He doesn't miss it.

My dad told us of the ALS diagnosis on Father's Day, 2008. By Father's Day, 2009, he was completely confined to a wheelchair, unable to walk. He was unable to speak, or eat without his feeding tube, but he could still laugh, and he could still attempt to drink a jack and coke with his sons.

By Thanksgiving of this year, he could still type on a speaking keyboard, and give us a thumbs up. And as recent as this Christmas, he still insists on removing his breathing mask for photographs.

People ask how he's doing. Casually. It's not a casual question, and it's not a casual answer. I say "he's okay" meaning "he's not dead yet." The real answer is something like "He has a positive attitude, but feels utterly helpless and very lonely. He has lost the use of all limbs, except for his left hand, which is good for changing the channel. He eats through a tube. He can't talk." I usually try to change the subject very quickly.

Judt does a fantastic job of describing the condition, from the inside out. The blessing of ALS is that you retain your mental capacity, sharp as a tack, so accounts of people suffering from ALS aren't uncommon. Of course, the blessing is the same as the curse.

Father's Day 2010 is six months away.
posted by jabberjaw at 10:36 AM on December 30, 2009 [6 favorites]

jabberjaw, your father is so unlucky to have this horrible disease, and so lucky to have a child like you. (But it's probably not all luck--awesome parents tend to raise awesome children, and he sounds like an incredible man.)
posted by Sidhedevil at 10:49 AM on December 30, 2009

Who would have thought that Lou Gehrig would get Lou Gehrig's disease?
posted by Evilspork at 10:50 AM on December 30, 2009

vacapinta: Likewise, we imagine that disasters will destroy us and we will be unable to cope. But, after a period of grieving, we somehow do cope. And we go on living.

Uh, he basically says, in not so many words, that death would be better than his current condition.
posted by Avenger at 1:26 PM on December 30, 2009

At least people know he's conscious, and not in a fake-coma for 23 years (a story that bears repeating, forever).
posted by stbalbach at 4:45 PM on December 30, 2009

Does anyone else think that resources should be developed to enable such people use to Internet-capable tools? Not that this would be a panacea for sufferers but the remote company of others seems to be something Judt desires.

The devices already exist. The Dynavox V and the LC Technologies Eyegaze both let you browse the web, in addition to communicating using assistive speech (text to speech with menus and touch/gaze tracking).
posted by zippy at 7:11 PM on December 30, 2009

holgate: Yes, but ALS / Lou Gehrig's isn't as common a term in the UK (example) and while Judt has lived in the US for a while, he's British, and I thought it worth the gloss.

I had to do a quick check to make sure that this post was about that disease, so I just wanted to mention it very quickly, in case it helped anyone else. I didn't mean any derail or disrespect, just a point of clarification for any other yanks who needed it.

Tragic stuff, all around. I just don't have any words for it.
posted by paisley henosis at 12:02 PM on January 2, 2010

The Trials of Tony Judt. More about his life and about the Remarque lecture, from the Chronicle of Higher Education.
posted by chinston at 9:32 PM on January 8, 2010

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