The Prisoner

Locked-in Syndrome is the subject of the Julien Schnabel film, The Diving Bell and the Butterfly, based on the book of the same name by French journalist and author, Jean-Dominique Bauby. In the current New York Review of Books, the brilliant NYU political philosopher Tony Judt reveals his struggle with a form of ALS, or Lou Gehrig’s disease. Judt describes becoming a prisoner of his own body, to the extent that he is no longer able to attend to any of his own needs. Pleasure becomes secondary when a minor itch can be a source of torment. Nighttime and sleep can feel like abandonment, the anxiety only assuaged by the presence of the baby monitor. The miracle, and the nightmare, is the brain’s ability to function even when it is the very element that has caused the body to stop functioning. This dualism is only part of the incongruity described in the horror story that Bauby and Judt tell with disconcerting vividness.

   

How can prose soar when the body is tethered to the ball and chain of neuro-muscular collapse? Compensation is certainly part of the story. Oliver Sacks has spent a good deal of his career detailing how the loss of one or another faculty can result in the creation of new talents and capacities. V.S. Ramachandran’s phantom limb hypothesis also comes to mind. The mind’s ability to project an alternate reality as a means of coping with trauma is bewildering.  The massive neurological failure described by Judt goes beyond the loss of hearing or sight.  Helen Keller was at least able to get up and walk. She could swallow, feel, and scratch that itch. For Judt, the very act of writing the article is a testament to the richness of his inner life, and a challenge to the descriptive power of predictable words like aspiration and hope. Why live when there is nothing to live for? Judt does not undergo a transcendent, white light experience, but neither does he appear to be the victim of what we would normally define as despair. For starters, he is graced with the will to dictate his thoughts.