In 1995, 44-year-old Jean-Dominique Bauby was the editor-in-chief of French Elle, the father of two young children, and a man known and loved for his wit, his style, and his impassioned approach to life. By the end of the year, he was also the victim of a rare kind of stroke to the brain stem. After 20 days in a coma, Bauby awoke into a body which had all but stopped working: only his left eye functioned, allowing him to see and, by blinking it, to make clear that his mind was unimpaired.
Almost miraculously, he was soon able to express himself in the richest detail, dictating a word at a time, blinking to select each letter as the alphabet was recited to him slowly, over and over again. In the same way, he was able, eventually, to compose this extraordinary book.
By turns wistful, mischievous, angry, and witty, Bauby bears witness to his determination to live as fully in his mind as he had been able to do in his body. He explains the joy and deep sadness of seeing his children and of hearing his aged father's voice on the phone. In magical sequences, he imagines traveling to other places and times and of lying next to the woman he loves. Fed only intravenously, he imagines preparing and tasting the full flavor of delectable dishes. Again and again, he returns to an "inexhaustible reservoir of sensations", keeping in touch with himself and the life around him.
Jean-Dominique Bauby died two days after the French publication of The Diving Bell and the Butterfly.
This book is a lasting testament to his life.
Through the frayed curtain at my window, a wan glow announces the break
of day. My heels hurt, my head weighs a ton, and something like a giant
invisible cocoon holds my whole body prisoner. My room emerges slowly
from the gloom. I linger over every item: photos of loved ones, my
children's drawings, posters, the little tin cyclist sent by a friend
the day before the Paris-Roubaix bike race, and the IV pole hanging over
the bed where I have been confined these past six months, like a hermit
crab dug into his rock.
No need to wonder very long where I am, or to recall that the life I
once knew was snuffed out Friday, the eighth of December, last year.
Up until then I had never even heard of the brain stem. I've since
learned that it is an essential component of our internal computer, the
inseparable link between the brain and the spinal cord. That day I was
brutally introduced to this vital piece of anatomy when a
cerebrovascular accident took my brain stem out of action. In the past,
it was known as a "massive stroke," and you simply died. But
improved resuscitation techniques have now prolonged and refined the
agony. You survive, but you survive with what is so aptly known as
"locked-in syndrome." Paralyzed from head to toe, the patient,
his mind intact, is imprisoned inside his own body, unable to speak or
move. In my case, blinking my left eyelid is my only means of
Of course, the party chiefly concerned is the last to hear the good
news. I myself had twenty days of deep coma and several weeks of
grogginess and somnolence before I truly appreciated the extent of the
damage. I did not fully awake until the end of January. When I finally
surfaced, I was in Room 119 of the Naval Hospital at Berck-sur-Mer, on
the French Channel coast --- the same Room 119, infused now with the
first light of day, from which I write.
An ordinary day. At seven the chapel bells begin again to punctuate the
passage of time, quarter hour by quarter hour. After their night's
respite, my congested bronchial tubes once more begin their noisy
rattle. My hands, lying curled on the yellow sheets, are hurting,
although I can't tell if they are burning hot or ice cold. To fight off
stiffness, I instinctively stretch, my arms and legs moving only a
fraction of an inch. It is often enough to bring relief to a painful
My diving bell becomes less oppressive, and my mind takes flight like a
butterfly. There is so much to do. You can wander off in space or in
time, set out for Tierra del Fuego or for King Midas's court. You can
visit the woman you love, slide down beside her and stroke her
still-sleeping face. You can build castles in Spain, steal the Golden
Fleece, discover Atlantis, realize your childhood dreams and adult
Enough rambling. My main task now is to compose the first of these
bedridden travel notes so that I shall be ready when my publisher's
emissary arrives to take my dictation, letter by letter. In my head I
churn over every sentence ten times, delete a word, add an adjective,
and learn my text by heart, paragraph by paragraph.
Seven-thirty. The duty nurse interrupts the flow of my thoughts.
Following a well-established ritual, she draws the curtain, checks
tracheostomy and drip feed, and turns on the TV so I can watch the news.
Right now a cartoon celebrates the adventures of the fastest frog in the
West. And what if I asked to be changed into a frog? What then?
The last time I saw my father, I shaved him. It was the week of my
stroke. He was unwell, so I had spent the night at his small apartment
near the Tuileries gardens in Paris. In the morning, after bringing him
a cup of milky tea, I decided to rid him of his few days' growth of
beard. The scene has remained engraved in my memory.
Hunched in the red-upholstered armchair where he sifts through the day's
newspapers, my dad bravely endures the rasp of the razor attacking his
loose skin. I wrap a big towel around his shriveled neck, daub thick
lather over his face, and do my best not to irritate his skin, dotted
here and there with small dilated capillaries. From age and fatigue, his
eyes have sunk deep into their sockets, and his nose looks too prominent
for his emaciated features. But, still flaunting the plume of hair ---
now snow white --- that has always crowned his tall frame, he has lost
none of his splendor.
All around us, a lifetime's clutter has accumulated; his room calls to
mind one of those old persons' attics whose secrets only they can know
--- a confusion of old magazines, records no longer played,
miscellaneous objects. Photos from all the ages of man have been stuck
into the frame of a large mirror. There is dad, wearing a sailor suit
and playing with a hoop before the Great War; my eight-year-old daughter
in riding gear; and a black-and-white photo of myself on a
miniature-golf course. I was eleven, my ears protruded, and I looked
like a somewhat simpleminded schoolboy. Mortifying to realize that at
that age I was already a confirmed dunce.
I complete my barber's duties by splashing my father with his favorite
aftershave lotion. Then we say goodbye; this time, for once, he neglects
to mention the letter in his writing desk where his last wishes are set
We have not seen each other since. I cannot quit my seaside confinement.
And he can no longer descend the magnificent staircase of his apartment
building on his ninety-two-year-old legs. We are both locked-in cases,
each in his own way: myself in my carcass, my father in his fourth-floor
apartment. Now I am the one they shave every morning, and I often think
of him as a nurse's aide laboriously scrapes my cheeks with a week-old
blade. I hope that I was a more attentive Figaro.
Every now and then he calls, and I listen to his affectionate voice,
which quivers a little in the receiver they hold to my ear. It cannot be
easy for him to speak to a son who, as he well knows, will never reply.
He also sent me the photo of me at the miniature-golf course. At first I
did not understand why. It would have remained a mystery if someone had
not thought to look at the back of the print. Suddenly, in my own
personal movie theater, the forgotten footage of a spring weekend began
to unroll, when my parents and I had gone to take the air in a windy and
not very sparkling seaside town. In his strong, angular handwriting, dad
had simply noted: Berck-sur-Mer, April 1963.
From the Hardcover edition.
Excerpted from "The Diving Bell and the Butterfly: A Memoir of Life in Death" by Jean-Dominique Bauby. Copyright © 1998 by Jean-Dominique Bauby. Excerpted by permission. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. Excerpts are provided solely for the personal use of visitors to this web site.