Tuesday, January 5, 2010

ALS Entrapment

Very much worth your while to read Tony Judt's poignant reflections on living with ALS (Lou Gehrig's Disease). Every night for him devolves into a nightmarish trial of fortitude as, essentially quadriplegic but with complete sensation, he is forced to endure sleeping in the same position in bed until the breaking of the dawn. All those subtle little shifts in body position-- the mindless scratch to alleviate an itch, the pulling of the covers, the unconscious roll to the side-- are lost to Mr. Judt. And alone he must bear the unbearable motionless imprisonment; the itch that screams, the leg cramp, the throbbing back all through the night. He writes beautifully of the mental gymnastics he puts himself through in order to distract his mind from the torment:
My solution has been to scroll through my life, my thoughts, my fantasies, my memories, mis-memories, and the like until I have chanced upon events, people, or narratives that I can employ to divert my mind from the body in which it is encased. These mental exercises have to be interesting enough to hold my attention and see me through an intolerable itch in my inner ear or lower back; but they also have to be boring and predictable enough to serve as a reliable prelude and encouragement to sleep. It took me some time to identify this process as a workable alternative to insomnia and physical discomfort and it is by no means infallible. But I am occasionally astonished, when I reflect upon the matter, at how readily I seem to get through, night after night, week after week, month after month, what was once an almost insufferable nocturnal ordeal. I wake up in exactly the position, frame of mind, and state of suspended despair with which I went to bed—which in the circumstances might be thought a considerable achievement.

I had a patient like this once. An older guy with advanced ALS (he could move his arms somewhat) who presented with toxic megacolon from c difficile colitis. He recovered physiologically quite well from the subtotal colectomy but he was a difficult patient nonetheless. He would stare through people, seemingly not even listening to what doctors or nurses had to say. These bright blue piercing eyes, sunken in his wan, pale, haggard, desperate face. You'd go into his room and it was an endless stream of requests and demands. I want water. I'm cold. Roll me. Bring me water. The pleading eyes and this low monotone voice, over and over, day after day. It was depressing. You'd bring him some water and then there would be another thing he needed. And then another. He'd been reduced by the disease to a series of instantaneous wants and desires, a shell of human dignity. It was horrible.


Anonymous said...

Isn't it strange the Lou Gehrig died of Lou Gehrig's disease???

Risa Denenberg said...

Thanks for posting this. My ALS patients have taught me so much about sheer endurance living under the terror of body entrapment. The ability to adapt under such limits is truly amazing, but it is also understandable that some are unable to make a "positive" adjustment, and are just miserable.

Pinkie said...

Reading Tony's account of how he has to transcend to another level every night in order to gain much-needed rest left me in a state of near panic. My God.

I cannot imagine being held in their straight-jacket and holding on to any semblance of sanity. I am in awe of anyone who has been diagnosed with ALS, lives with the symptoms, and has chosen to stay alive.