Wednesday, December 30, 2009

Modern Calvaries

An unforgettable piece by Tony Judt at the NYRB on life with ALS:
I leave bedtime until the last possible moment compatible with my nurse's need for sleep. Once I have been "prepared" for bed I am rolled into the bedroom in the wheelchair where I have spent the past eighteen hours. With some difficulty (despite my reduced height, mass, and bulk I am still a substantial dead weight for even a strong man to shift) I am maneuvered onto my cot. I am sat upright at an angle of some 110° and wedged into place with folded towels and pillows, my left leg in particular turned out ballet-like to compensate for its propensity to collapse inward. This process requires considerable concentration. 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.


  1. Wow, I had no idea. I saw him daily in the summer of 2007 and he was fine. I'm a bit stunned.

  2. The "a bit" there is in no way meant to sound as superficial as it does.

  3. Oh my goodness, and now I have actually read it. "Unforgettable" barely begins to describe it. And I can only see him loping across grassy hills; really he always seemed so embodied, in particular for such an intellectual (and we could certainly go off on that comment...). Yes, stunned, by the fact of it and the content of the piece.

  4. I have known three people who died from ALS. It is a very terrible disease that leaves people trapped in their bodies with their mind intact