|Genre||Memoir (132 pp.)|
|Keywords||Abandonment, Body Self-Image, Catastrophe, Chronic Illness/Chronic Disease, Communication, Disability, Grief, Hospitalization, Human Worth, Humor and Illness/Disability, Illness Narrative/Pathography, Individuality, Loneliness, Memory, Mourning, Patient Experience, Stroke, Suffering, Survival, Technology, Time|
In December 1995, at the age of 43, the author suffered a sudden and severe stroke in the brain stem and emerged from a coma several weeks later to find himself in a rare condition called "locked-in syndrome" (LIS). Although his mind was intact, he had lost virtually all physical control, able to move only his left eyelid. There was no hope of significant recovery. This memoir, composed and dictated the following summer, consists of Bauby's brief and poignant reflections on his condition and excursions into the realms of his memory, imagination, and dreams.
The composition of this book was an extraordinary feat in itself. Unable to write or speak, Bauby composed each passage mentally and then dictated it, letter by letter, to an amanuensis who painstakingly recited a frequency-ordered alphabet until Bauby chose a letter by blinking his left eyelid once to signify "yes." In what was likely another heroic act of will, Bauby survived just long enough to see his memoir published in the spring of 1997.
Extraordinary, "monumental," and "inspiring" are words that appear frequently in reviews of this book, and they are appropriate. Picture Bauby's situation as the father of two young children and editor-in-chief of French Elle, suddenly in a hospital bed, unable to speak or move his body, connected to intravenous and feeding tubes, utterly dependent on the care of others, and with no hope of recovery. Few fall so far so fast, and the spectacle of that fall is part of the phenomenon of this book.
Then there is the process of composition, which dramatizes the plight of the victim of locked-in syndrome, who has a full mental and emotional life within but virtually no way to connect to others or the world outside. (Bauby was in this sense more fortunate than many LIS victims, who have no voluntary control at all.)
Finally, there is this book, the product of Bauby's suffering, character, and skill, in whose several dozen short prose explorations we are given, with grace, irony, and poignancy, but without self-pity, a moving testimony to the persistence of spirit (the lightness of the "butterfly") in the face of extreme physical disability (the heaviness of the "diving bell"). Bauby tells us, for instance, of his ambivalence about being bathed and about phone calls with loved ones in which he can only listen.
He speaks briefly of the medical technology that saved his life as having "prolonged and refined the agony," and he writes tellingly of the intense solitude and loneliness of Sundays, which are not broken up with the usual contact with medical staff. Although he is fed through a tube, the remembering and imagining of eating, even of cooking (sometimes according to recipes sent by friends) is a source of great pleasure. He describes the making of a favorite sausage, for example, and the intense pleasure he derives from being wheeled down to the boardwalk of the nearby beach to savor the smell of french fries.
One of his most frequent themes, and most telling, is to narrate his experience of the various stages of his coping with his fate and disability, including, at the end, being forced to admit that he is beginning a new life in which almost everything is radically changed for the worse. In the last of the book's many poignant images, Bauby observes on a nearby table the half-open purse of his amanuensis and realizes that its ordinary contents--a hotel room key, a metro ticket, and a hundred-franc note--look to him like alien objects, the artifacts of a way of life to which he has become a stranger.
Bauby was clearly a man who loved life, and he gives us in these memoirs a keen sense of his losses and also of his compensations for them through wit and imagination. In spite of the agony of his situation and the arduousness of the process of composition and dictation, Bauby's writing is consistently light and witty, exemplifying the beloved qualities of conversation he mourns the loss of in his locked-in condition.
|Place Published||New York|
|Miscellaneous||Translated from the French by Jeremy Leggatt. Originally published in France as Le Scaphandre et le Papillon by Editions Robert Laffont, Paris, in 1997. An award-winning film of the same name, directed by Julian Schnabel, opened nationwide in the US on November 30, 2007 and received uniformly outstanding reviews.|
|Annotated by||Woodcock, John A.|
|Date of Entry||01/16/98|