Book Review

The Diving Bell and the Butterfly: A memoir of life in death

N Engl J Med 1998; 339:856-857September 17, 1998

Article

The Diving Bell and the Butterfly: A memoir of life in death
By Jean-Dominique Bauby. Translated from the French by Jeremy Leggatt. 132 pp. New York, Vintage, 1997. $11. ISBN: 0-375-70121-4

The locked-in syndrome is a complication of a cerebrovascular accident in the base of the pons. The patient is alert and fully conscious but quadriplegic, with lower-cranial-nerve palsies. Only vertical movements of the eyes and blinking are possible. At the age of 43, Jean-Dominique Bauby, who was editor of Elle and a robust bon vivant, suffered such a stroke. After 20 days in a deep coma, he gradually regained consciousness. His right eyelid was sutured shut to prevent corneal ulcerations, he was fed through a gastric tube, he drooled uncontrollably, he breathed through a tracheostomy tube, his urine drained from a catheter, and his bottom was wiped by others. He felt as if he were trapped in a diving bell, but his mind was free as a butterfly. Bauby wrote The Diving Bell and the Butterfly solely by blinking his left eye in response to the reading of an alphabet, arranged according to the frequency with which each letter occurs in French (E, S, A, R, I, . . . W). A friend read off the letters, pausing when Bauby blinked. Letters laboriously became words, and then sentences.

I brought this book along on an airplane that took me to a meeting in a distant city. Reading it made me hope that air traffic would delay our arrival. It is a remarkable tribute to the human spirit — a book that will inspire any physician, medical student, nurse, or patient. There is no self-pity and no thought of physician-assisted suicide. The tone is as ironic and dry as perhaps only the French can be. In a seaside hospital, Bauby, imprisoned in his paralyzed body, recounts his days. He notes that a stroke such as his is usually fatal, but “improved resuscitation techniques have prolonged and refined the agony.”

Now, instead of directing one of France's leading fashion magazines, he is strapped in a wheelchair, completely dependent on others for the simplest demands of life: shut the door, roll me over, fluff up a pillow. “A domestic event as commonplace as washing can trigger the most varied emotions.” And then there was the boor who, with a conclusive “Good night,” turned off the Bordeaux–Munich soccer game at halftime and left. Bauby's attendants dressed him not in hospital garb, but in his own clothes (“Good for the morale,” according to the neurologist). Bauby comments, “If I must drool, I may as well drool on cashmere.” He is, as he says, a “voiceless parrot” who has made his nest in a dead-end corridor of the neurology department. When the stretcher-bearer who returns him to his room leaves with a hearty “Bon appétit!” the effect on Bauby is the same as “saying `Merry Christmas' on August 15.”

Fed by two or three bags of brownish fluid instilled into a gastric tube, Bauby recalls his culinary skills — boeuf en gelée and homemade sausage — and melon, red fruit, and oysters, but above all, sausage. He imagines spending a day with his children, lying in bed beside his lover, and flying to Hong Kong, and he dreams that Radovan Karadzic, leader of the Bosnian Serbs, is performing a tracheotomy on him. In the Café de Flore, noxious gossip from the lower depths of Parisian snobbery poisons the air: “Did you know that Bauby is now a total vegetable?” Bauby, “to prove that my IQ was still higher than a turnip's,” begins a remarkable correspondence, not by pen but by blinks. “The arrival of the mail [had] the character of a hushed and holy ceremony.” Every sentence of this arduously written book is a jewel burnished by a rare disease and still rarer intelligence.

Bauby died only two days after the publication of his book in France.

Robert S. Schwartz, M.D.

Citing Articles (1)

Citing Articles

1. 1

   Anand B. Karnad. (1999) Humanistic Qualities in End-of-Life Care: Lessons from The Diving Bell and the Butterfly: A Memoir of Life in Death —Required Reading in an End-of-Life Care Curriculum for Internal Medicine Residents. Journal of Palliative Medicine 2:4, 411-416
   CrossRef