A very brief diary, partly because my word’s can’t match that of my subject – and also because I find this too painful to write too much.
Tony Judt, a British Historian and Professor of History at NYU, was diagnosed with Lou Gehrig’s disease in September 2008. There’s a quite incredible unsentimental and unsparing piece about living with the illness in the current issue of The New York Review of Books. Just to give you a harrowing sample…
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…
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… 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.
…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
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