Tony Judt, Leading Public Intellectual, Confronts ALS

During the past decade, Tony Judt emerged as one of America's leading public intellectuals. He's combative, often controversial (especially when talking about Israel), and sometimes disliked. But he's taken seriously. And many have had nothing but sheer praise for his master work, Postwar: A History of Europe Since 1945. The NYU historian had built up a career that many envied. But then things started going wrong ... physically, not intellectually. In 2008, Judt was diagnosed with ALS, or Lou Gehrig's disease. And he made his diagnosis widely known earlier this year, when he published an essay, "Night," in The New York Review of Books. The article is short, but it brings you right inside his daily experience. He writes:

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. ... 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. I am then covered, my hands placed outside the blanket to afford me the illusion of mobility but wrapped nonetheless since—like the rest of me—they now suffer from a permanent sensation of cold. I am offered a final scratch on any of a dozen itchy spots from hairline to toe; the Bi-Pap breathing device in my nose is adjusted to a necessarily uncomfortable level of tightness to ensure that it does not slip in the night; my glasses are removed...and there I lie: trussed, myopic, and motionless like a modern-day mummy, alone in my corporeal prison, accompanied for the rest of the night only by my thoughts.

This experience hasn't slowed down Judt a bit. In fact, quite the opposite, Judt has been ramping up his publications, proving even more prolific than before. (His latest book, Ill Fares the Land, will be published this week.) Judt's battle with ALS and his sense of intellectual urgency get discussed in the latest edition of New York Magazine. It's a piece well worth reading. So also is the large profile that ran in The Chronicle of Higher Education in January. Above we feature an interview with Judt posted by The Guardian.


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  • Saul says:

    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
    http://www.moveforals.com
    http://www.twitter.com/moveforals
    saul@moveforals.com

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