Moving essay by Tony Judt on ALS

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs–since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing–nothing–that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

But then comes the night. I leave bedtime until the last possible moment compatible with my nurse's need for sleep. Once I have been "prepared" for bed I am rolled into the bedroom in the wheelchair where I have spent the past eighteen hours. With some difficulty (despite my reduced height, mass, and bulk I am still a substantial dead weight for even a strong man to shift) I am maneuvered onto my cot. I am sat upright at an angle of some 110° and wedged into place with folded towels and pillows, my left leg in particular turned out ballet-like to compensate for its propensity to collapse inward. This process requires considerable concentration. If I allow a stray limb to be mis-placed, or fail to insist on having my midriff carefully aligned with legs and head, I shall suffer the agonies of the damned later in the night.

Read the whole thing.  I thank The Browser for the pointer.  Here is previous MR coverage of Tony Judt, an excellent thinker and writer.

Comments

It's easy for me to say what follows since I am not in Mr. Judt's position.

I have directed my doctor and my children, in writing, that I do not want any extraordinary means used to keep me alive. However, as technology and medicine progress, the definition of "extraordinary means" changes. What was extraordinary or even not available in 1950 is commonplace today. That has required me to talk with my doctor and to include in my definition of "extraordinary means" things like being helped to breathe by an external device for longer than 24 hours.

My grandfather, a devout Catholic and a physician, died when he was in his late 80s of uremic poisoning. His condition was "easily" addressed by going to dialysis 3 times per week. At the time of his death, he was alert and competent, and he discussed his situation with his priest and a son in law who was also Catholic and a physician. My grandfather said that he had lived a long and useful life (and he had, he was a very generous man to his family and his patients), and he considered the extension of it by dialysis as extraordinary. And he died. His father also died of uremic poisoning.

If I was in Mr. Judt's position, I would consider that the means being used to keep me alive were extraordinary, and I would direct that they not be used to prolong my life. I am not suggesting that Mr. Judt should do the same, only that for each of us the point at which we no longer want to be kept alive by the latest technology and methods differs.

I've just finished reading Postwar. Wonderful book. It's sad hear that about him.

That's depressing, but also inspiring in its own way. It makes me want to go out for a run, or something.

If I were in his position, I don't know if I could take it.

Mulp,

Your heart is black.

I don't think anyone knows with certainity what he/she would do if such a situation confronted them. I accept Tony Judt's decision. Through it he continues to transmit wisdom from which we all can benefit. I frankly look forward to further essays and memoirs from this wise man, while I mourn the passing of another, Howard Zinn.

In September 2008, historian Tony Judt was diagnosed with amyotrophic lateral sclerosis (ALS) – better known as Lou Gehrig’s Disease or Motor Neuron Disease. ALS is a degenerative neuromuscular disorder of the motor neurons: it is related to Parkinson’s and Alzheimer’s, as well as lesser known neurological disorders.

Tony is my former university professor, mentor and close friend. Like so many, I have benefited from knowing him in more ways than I could begin to list. In the eighteen months since receiving his diagnosis I have watched Tony transform from a fit, healthy, active, independent man to a frozen body in a wheelchair. I have witnessed the frightening speed of his physical deterioration: first, losing the power of his fingers; then his arms; then his legs; and, within eight months, becoming confined to his present state: shriveled and paralyzed from the neck down, able to breathe only with the aid of a machine.

I am writing to you today about Move for ALS. On May 15th I will embark on a cycle ride from Seattle to New York to raise awareness of ALS and to raise money for Project A.L.S., the charity that supports scientific research seeking a cure to the disease. To date, Project A.L.S. has raised over $53 million, directing 82% to scientific research programs, including the foundation of the Jenifer Estess Laboratory for Stem Cell Research at Columbia University, the world’s first and only privately funded lab dedicated exclusively to ALS stem cell research.

In collaboration with Tony Judt and Project A.L.S., we have built a campaign website (www.moveforals.com) which has already received substantial attention from web and print media, as well as professional medical organizations. In under two days since the website was launched we have received over $2000 in donations and countless pledges of support: it has been a quite incredible response. But this is only the very beginning.

We appeal to you to join the campaign. Donations of any kind can be made easily on the Move for ALS website, with attractive gifts on offer to substantial donors. Checks can also be sent directly to Project A.L.S. (be sure to reference Move for ALS): 3960 Broadway, †¨Suite 420,†¨ New York, New York, 10032, USA.

Publicity is equally important to the campaign. We would be especially grateful if you would forward this letter to friends, relatives, colleagues and anyone else: we want to offer people all over the world the chance to take part. If you have access to media or web outlets (e.g. blogs or heavy-traffic Twitter or Facebook pages) where you could give further publicity to our campaign, it would be particularly appreciated.

I believe that, during my lifetime, a cure can be discovered for this catastrophic disease. It will come only from expensive scientific research: and when it does it will be a joy to know that we had helped a little along the way.

Please join us and Move for ALS!

Saul Goldberg
www.moveforals.com
www.twitter.com/moveforals
saul@moveforals.com

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