I tell the story of Tony Judt. Tony Judt was a writer on recent world history whom I greatly admired. His book “Reappraisals: Reflections on the Forgotten Twentieth Century” is a classic. He suffered and died from a motor neuron disorder, a variant of amyotrophic lateral sclerosis (ALS).
In the advanced stages of the disease – a disease which is named by doctors, appropriately one is bound to think, “the cruellest disease” – he could no longer move any of his limbs. He could not move his torso. He could still swallow, speak and move his head. But he was otherwise utterly helpless. He could not, for instance, scratch an itch. When the desire, still there in all intensity, to stretch , to point, to beckon, to bend, to shift around in any way, to stand or move or exercise came over him he had to suppress the thought and the accompanying muscle memory.