DurÂing the past decade, Tony Judt emerged as one of AmerÂiÂca’s leadÂing pubÂlic intelÂlecÂtuÂals. He’s comÂbatÂive, often conÂtroÂverÂsial (espeÂcialÂly when talkÂing about Israel), and someÂtimes disÂliked. But he’s takÂen seriÂousÂly. And many have had nothÂing but sheer praise for his masÂter work, PostÂwar: A HisÂtoÂry of Europe Since 1945. The NYU hisÂtoÂriÂan had built up a career that many envied. But then things startÂed going wrong … physÂiÂcalÂly, not intelÂlecÂtuÂalÂly. In 2008, Judt was diagÂnosed with ALS, or Lou Gehrig’s disÂease. And he made his diagÂnoÂsis wideÂly known earÂliÂer this year, when he pubÂlished an essay, “Night,” in The New York Review of Books. The artiÂcle is short, but it brings you right inside his daiÂly expeÂriÂence. He writes:
DurÂing the day I can at least request a scratch, an adjustÂment, a drink, or simÂply a graÂtuÂitous re-placeÂment of my limbs—since enforced stillÂness for hours on end is not only physÂiÂcalÂly uncomÂfortÂable but psyÂchoÂlogÂiÂcalÂly close to intolÂerÂaÂble. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exerÂcise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny subÂstiÂtute or else find a way to supÂpress the thought and the accomÂpaÂnyÂing musÂcle memÂoÂry.
But then comes the night. … If I allow a stray limb to be mis-placed, or fail to insist on havÂing my midriff careÂfulÂly aligned with legs and head, I shall sufÂfer the agoÂnies of the damned latÂer in the night. I am then covÂered, my hands placed outÂside the blanÂket to afford me the illuÂsion of mobilÂiÂty but wrapped nonetheÂless since—like the rest of me—they now sufÂfer from a perÂmaÂnent senÂsaÂtion of cold. I am offered a final scratch on any of a dozen itchy spots from hairÂline to toe; the Bi-Pap breathÂing device in my nose is adjustÂed to a necÂesÂsarÂiÂly uncomÂfortÂable levÂel of tightÂness to ensure that it does not slip in the night; my glassÂes are removed…and there I lie: trussed, myopic, and motionÂless like a modÂern-day mumÂmy, alone in my corÂpoÂreÂal prison, accomÂpaÂnied for the rest of the night only by my thoughts.
This expeÂriÂence hasÂn’t slowed down Judt a bit. In fact, quite the oppoÂsite, Judt has been rampÂing up his pubÂliÂcaÂtions, provÂing even more proÂlifÂic than before. (His latÂest book, Ill Fares the Land, will be pubÂlished this week.) Judt’s batÂtle with ALS and his sense of intelÂlecÂtuÂal urgency get disÂcussed in the latÂest ediÂtion of New York MagÂaÂzine. It’s a piece well worth readÂing. So also is the large proÂfile that ran in The ChronÂiÂcle of HighÂer EduÂcaÂtion in JanÂuÂary. Above we feaÂture an interÂview with Judt postÂed by The Guardian.
In SepÂtemÂber 2008, hisÂtoÂriÂan Tony Judt was diagÂnosed with amyÂotrophÂic latÂerÂal scleÂroÂsis (ALS) – betÂter known as Lou Gehrig’s DisÂease or Motor NeuÂron DisÂease. ALS is a degenÂerÂaÂtive neuÂroÂmusÂcuÂlar disÂorÂder of the motor neuÂrons: it is relatÂed to Parkinson’s and Alzheimer’s, as well as lessÂer known neuÂroÂlogÂiÂcal disÂorÂders.
Tony is my forÂmer uniÂverÂsiÂty proÂfesÂsor, menÂtor and close friend. Like so many, I have benÂeÂfitÂed from knowÂing him in more ways than I could begin to list. In the eighÂteen months since receivÂing his diagÂnoÂsis I have watched Tony transÂform from a fit, healthy, active, indeÂpenÂdent man to a frozen body in a wheelÂchair. I have witÂnessed the frightÂenÂing speed of his physÂiÂcal deteÂriÂoÂraÂtion: first, losÂing the powÂer of his finÂgers; then his arms; then his legs; and, withÂin eight months, becomÂing conÂfined to his present state: shrivÂeled and parÂaÂlyzed from the neck down, able to breathe only with the aid of a machine.
I am writÂing to you today about Move for ALS. On May 15th I will embark on a cycle ride from SeatÂtle to New York to raise awareÂness of ALS and to raise monÂey for Project A.L.S., the charÂiÂty that supÂports sciÂenÂtifÂic research seekÂing a cure to the disÂease. To date, Project A.L.S. has raised over $53 milÂlion, directÂing 82% to sciÂenÂtifÂic research proÂgrams, includÂing the founÂdaÂtion of the Jenifer EstÂess LabÂoÂraÂtoÂry for Stem Cell Research at ColumÂbia UniÂverÂsiÂty, the world’s first and only priÂvateÂly fundÂed lab dedÂiÂcatÂed excluÂsiveÂly to ALS stem cell research.
In colÂlabÂoÂraÂtion with Tony Judt and Project A.L.S., we have built a camÂpaign webÂsite (www.moveforals.com) which has already received subÂstanÂtial attenÂtion from web and print media, as well as proÂfesÂsionÂal medÂical orgaÂniÂzaÂtions. In under two days since the webÂsite was launched we have received over $2000 in donaÂtions and countÂless pledges of supÂport: it has been a quite incredÂiÂble response. But this is only the very beginÂning.
We appeal to you to join the camÂpaign. DonaÂtions of any kind can be made easÂiÂly on the Move for ALS webÂsite, with attracÂtive gifts on offer to subÂstanÂtial donors. Checks can also be sent directÂly to Project A.L.S. (be sure to refÂerÂence Move for ALS): 3960 BroadÂway, 
Suite 420,
 New York, New York, 10032, USA.
PubÂlicÂiÂty is equalÂly imporÂtant to the camÂpaign. We would be espeÂcialÂly grateÂful if you would forÂward this letÂter to friends, relÂaÂtives, colÂleagues and anyÂone else: we want to offer peoÂple all over the world the chance to take part. If you have access to media or web outÂlets (e.g. blogs or heavy-trafÂfic TwitÂter or FaceÂbook pages) where you could give furÂther pubÂlicÂiÂty to our camÂpaign, it would be parÂticÂuÂlarÂly appreÂciÂatÂed.
I believe that, durÂing my lifeÂtime, a cure can be disÂcovÂered for this catÂaÂstrophÂic disÂease. It will come only from expenÂsive sciÂenÂtifÂic research: and when it does it will be a joy to know that we had helped a litÂtle along the way.
Please join us and Move for ALS!
Saul GoldÂberg
http://www.moveforals.com
http://www.twitter.com/moveforals
saul@moveforals.com