Dear Friend,


As I write this, on Monday, May 24th, two young men are setting out by bike to cross the United States from Astoria, Oregon to Brighton Beach, New York. Saul Goldberg and Augustin Quancard are cycling coast to coast to raise consciousness and money in the fight against ALS (amyotrophic lateral sclerosis), Lou Gehrig’s disease.


Saul was my student. He was moved by my own misfortune – I was diagnosed with ALS in fall 2008 – and proposed last February that he and a friend do something dramatic and useful to help battle this disorder. ALS is a degenerative disease of the neuromuscular system which attacks the motor neurons. It is in the same family of disorders as Parkinson’s disease and Alzheimer’s and it is incurable.


I urge you to follow Saul and Auggie’s progress on their interactive website www.moveforals.com. There you can learn more about the disease, the work being done to overcome it and the ways in which you can help.


You can also follow the boys’ progress as they cross the country, from the Pacific to the Atlantic in the course of the next two months.


Above all, you can help: the smallest gift would be greatly appreciated. Vastly exceeding expectations, Saul and Auggie have already raised over $51,000, all of which will be devoted to scientific research.


Please do support this venture in any way you can and tell your friends about it. I would be truly grateful to you.


- Tony Judt





Night
By Tony Judt
January 14, 2010

I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig’s disease. Motor neuron disorders are far from rare: Parkinson’s disease, multiple sclerosis, and a variety of lesser diseases all come under that heading. What is distinctive about ALS—the least common of this family of neuro-muscular illnesses—is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one’s own deterioration.

In effect, ALS constitutes progressive imprisonment without parole. First you lose the use of a digit or two; then a limb; then and almost inevitably, all four. The muscles of the torso decline into near torpor, a practical problem from the digestive point of view but also life-threatening, in that breathing becomes at first difficult and eventually impossible without external assistance in the form of a tube-and-pump apparatus. 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.

From The New York Review of Books

Volume 57, Number 1 • January 14, 2010

View the complete article


For more on Tony Judt see the following:


Remarque Institute at NYU


Tony Judt’s new book, Ill Fares The Land (published March 2010)


Recent article featured in New York Magazine


Recent article published in The Guardian


Recent article published in The Chronicle of Higher Education