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.