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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