In his essay ‘Night’, historian Tony Judt gave his personal take on one particular aspect of Motor Neuron Disease (or Amyotrophic Lateral Sclerosis since he was living in the United States at the time). At the stage of writing this essay Judt was almost completely paralysed, but with no swallowing or jaw symptoms, and therefore able to dictate his thoughts. (Films of him in his last year – see the foot of this page – show that despite his nasal respiratory support he struggled to make a lot of sound when he spoke.)
The essay concerns the loneliness and isolation of lying awake at night unable to move. The movements that he is conscious of are the inability to ‘scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that …we all do dozens of times a day’. He describes the night-time agonies of being unable to do anything, or even request anything during the hours that his nurse is asleep. The only alternative to dealing with an itch is to find distracting mental tasks to do during his night-time existence as a modern ‘mummy’. Preparations for sleep have to be meticulous, because if anything is awry he will have to live with it all night, so no wonder he is obsessive. Before the nurse goes, Judt is offered a final scratch on any itchy places. Once the nurse has gone, Judt is alone and powerless. Although there is a baby’s intercom beside him to summon assistance, and he is desperately tempted to use it, Judt has had to train himself to avoid using it except in an emergency. He describes his mental exercises and memory searches in his night-time ‘Memory Chalet’ that he employs to get through the hours of his unbearable powerlessness. But this does not diminish his sense that this ‘helplessness is humiliating’, and he has intense feelings of isolation and imprisonment.
That the daytime passive transfer to a wheelchair is a lift for his spirits is a measure of how severe the isolation and frustration are for him.
The loneliness and helplessness at night are in some cases also accompanied by fear and panic – as depicted in the film ‘Untouchable’. ‘Night’ is essential reading for all therapists and clinicians, if for no other reason than that this is one element of experiencing a long-term condition that they cannot be around to observe.
Tony Judt (2010) ‘Night’, in The Memory Chalet, London, Heinemann
Tony Judt spoke about having Motor Neuron Disease in an interview available here: