Thursday, 21 June 2012
A few years ago I read a book called ‘The diving bell and the butterfly’, an extraordinary
Autobiography by a man named Jean-Dominic Bauby.
Jean-Dominic Bauby had been busy living his life. At 43years old, the Editor of Elle magazine in France - he had friends, two children and a new partner he loved. He was doing what we all do, living his life. Then with no warning he had a massive stroke that left him ‘locked in’ his body and his busy life came crashing down around him. After 20 days in a coma, he woke up to find that the only thing he could move was his left eyelid. Although perfectly lucid, all his thoughts, his ideas and his dreams were trapped, and the only way he could communicate was by winking. His friends found a way to communicate with him by saying the alphabet and he would wink when they reached the letter he wanted. The entire book was written this way and it opens a door and invites you into a place nobody would want to go. It is gut-wrenching at times, but there is unexpected beauty there too. At one point, he describes the surprising reality he sometimes glimpses - "my diving bell becomes less oppressive, and my mind takes flight like a butterfly."
Jean-Dominic Bauby was busy living his life - so was Tony Nicklinson, another victim of ‘locked-in’ syndrome whose struggle we have been following on the news. He is asking for help to die should he decide at some point that life has become unbearable. I cannot imagine how he must feel and would not be arrogant enough to suppose I could begin to.
Whatever the decision made by the legal powers that be, we must not lose sight of the human being behind the headline. For me, there is no greyer area than this... legislation that would lead to relief for Tony Nicklinson could lead someone else in a similar situation to feel a pressure to ‘relieve’ family and friends of the supposed burden of care. The right to die could become, with time and law, a perceived duty to die. Those who are the most vulnerable could become even more-so, life in all its variety could start to be judged on a set of perceived criteria that begins to erode our understanding of common inter-dependence, and so I struggle. I think we all do - and should.
But still I come back to Tony Nicklinson and his life, gifted to him by God. Because we share our fragile human condition, we have to listen. He is in a place nobody would want to go. It is gut-wrenching at times, but I hope there is unexpected beauty there too. Until a decision is made, until the time comes however it comes, I hope he still finds glimpses of the surprising reality Jean-Dominic Bauby described - "my diving bell becomes less oppressive, and my mind takes flight like a butterfly."