Moving essay by Tony Judt on ALS

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs–since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing–nothing–that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

But then comes the night. 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.

Read the whole thing.  I thank The Browser for the pointer.  Here is previous MR coverage of Tony Judt, an excellent thinker and writer.

Comments

Comments for this post are closed