IN THE SPOTLIGHT

Through the past several years, we’ve received so many heartwarming, cogent, worthwhile emails from patients, caregivers, family and friends. The messages contained within those pages are relevant and important and should be read by many. They carry with them the sense of urgency, care and commitment to finding purpose as well as solace in the battle each of us faces as we struggle to find a cure for ALS. Perhaps just as important, the letters and stories reflect our efforts to live with dignity, respect and care within the confines of life with ALS.

‘In the Spotlight’ offers the writings of many who have contributed in the past and would like to offer their perspectives in the future. We invite each of you to participate in whatever way you choose and look forward to hearing from you.

Tony Judt, well known historian, author and university professor is a frequent contributor to the New York Review of Books and an ALS patient.  We’re pleased to republish Night, his most insightful and moving essay published in January 2010 that captures the essence of ALS. 

It begins: 

“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.” 

Read the complete essay       Night

Read the review  of Tony’s new book “Ill Fares the Land.” by Tim Rutten of the Los Angeles Times.