The Diving Bell & The Butterfly

Jean-Dominique Bauby

Andrew Weil says of this slim memoir on the back jacket that it "is remarkable for its utter lack of self-pity or sentimentality." Amen, Dr. Weil, and would that all memoirs were so clear, concise, and evocative. The late Bauby, previously an editor at Elle magazine, suffered a massive stroke on December 8, 1995, that left him the victim of what is now known as locked-in syndrome, where most, of not all, of the body is paralyzed while the mind works. It is the basis for the classic horror novel _Johnny Got His Gun_ by Dalton Trumbo; the reality is, if anything, even more horrific than the fiction.

What Weil sees as a lack of self-pity I am inclined to read as a kind of self-loathing coupled with a seething rage at a world capable of resuscitating a man who was, for all intents and purposes, dead, and keeping him alive for another year and a half. Don't get me wrong; Bauby's self-loathing is not directed at the man he is, but the shell he has become, and he (quite rightly) takes no blame for it. Early on in the memoir, Bauby informs us that "In the past, [his condition] was known as a 'massive stroke,' and you simply died. But improved resuscitation techniques have now prolonged and refined the agony."

What must it be like to live in such a world? Bauby spends a hundred twenty pages letting us know, allowing us into the depths of his reminiscences, fantasies, and frustrationsas he slides closer and closer to his inevitable demise. He is a fine writer (or, in this case, dictator); his words conjure up the exact images he is trying to convey. The smell of french fries on the wind, heaven to some and disgusting to others; his fantasy of a statue coming to life to laugh with him at the inanity of his condition; his dream of his condition as a stage play, with him at the end leaping out of bed and walking offstage, the whole thing having been a dream. We can feel the frustration, the horror, and perhaps most pathetically the joy experienced at the smallest of pleasures linking back to the life he led before.

A starker and more obvious blasting of the medical establishment's mindless belief that life is always better than death has yet to be published, to my knowledge. Bauby's book is a horrific testament that should be required reading for every member of the medical profession. *** 1/2