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The Diving Bell and the Butterfly
By Jean-Dominique Bauby
Random House, Inc.
New York 1997
“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 diving bell 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.”
In this remarkable memoir, the editor of French Elle gives us a privileged, insiders’ view of the locked-in syndrome. Forty-three years old at the time of a severe stroke in December 1995, Bauby awakens to utter despair. A man at the peak of a career in fashion journalism finds himself quadriplegic, attached to a respirator, connected to a gastric tube for nutrition, and totally dependent upon a team of nurses and physical and respiratory therapists. He can swivel his neck and control the movements of his left eyelid, his right eye having been sewn shut to protect its cornea. A speech therapist, Sandrine, observes that Bauby comprehends her questions and can respond with blinks from the working eye. She designs an alphabet based upon the frequency of occurrence of letters in French-E S A R I N U…When she or other assistants slowly read the letters Bauby can blink to denote his choice. Thus he can respond to simple questions and make enquiries and comments of his own. More importantly, he can relate his thoughts and dreams to an ever patient and devoted friend, Claude Mendibil, who serves as his amanuensis. The memoir ends in August 1996. Bauby dies a few weeks later, two days before the publication in France of this work.
Imagination and memory save the sanity of Bauby. “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.”
Many friends stay away from his bedside uncertain what to say in the way of comfort. Others come but are severely discomforted by the appearance of their friend and colleague. Others stay, recite the special, encoded alphabet, note Bauby’s blinked responses, and respond to his comments and questions. We learn of the comforts of small acts—a gentle facial massage, a cheery “Bon appetif” delivered each day by the assistant who wheels him to his room from physical therapy. Other hospital staff do not fare as well, either ignoring Bauby or impatiently racing through his communication code. An ophthalmologist earns Bauby’s special contempt. “As the weeks went by, I wondered whether the hospital employed such an ungracious character deliberately—to serve as a focal point for the veiled mistrust the medical profession always arouses in long-term patients. A kind of scapegoat, in other words. If he leaves…I shall no longer have the solitary innocent pleasure of hearing his eternal question: ‘Do you see double?’ and replying—deep inside—‘Yes, I see two assholes, not one.’”
His children, Theophile and Celeste, bring Bauby consistent joy, either in their phoned descriptions of their days in school or in visits to his bedside. Theophile nonchalantly dabs with a Kleenex the saliva that drools from his father’s mouth. Nine year old Celeste cradles his head in her arms and “covers my forehead with noisy kisses, and says over and over, ‘You’re my dad, you’re my dad,’ as if in incantation.”
From this privileged vantage point we see the warts and the bright spots of institutional care of severely damaged patients. An outing by wheelchair provides moments of near ecstasy. We are privy to Bauby’s dreams, his gripes, his reflections on history and literature, his recollections of his ultra-active life before the stroke.
Six months along, Bauby senses that death approaches. “I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memory.” Resolutely, Bauby and Claude continue their collaboration.
In the final entry Bauby studies the half-open purse of his scribe: “…I see a hotel room key, a metro ticket, and a hundred-franc note folded in four, like objects brought back by a space probe sent to earth to study how earthlings live, travel, and trade with one another. The sight leaves me pensive and confused. Does the cosmos contain keys for opening up my diving bell? A subway line with no terminus? A currency strong enough to buy my freedom back? We must keep looking. I’ll be off now.”
In one hundred twenty-seven pages we see medical care in high moments and in frighteningly inhumane moments. We experience the magic of an affectionate touch and learn that even the quiet presence of a loved one at a bedside can bring comfort. We are reminded that even in the presence of a patient who appears in communicato a careless word can terrify or enrage the afflicted.
This book is a gift to us from the frontlines of severe, debilitating illness. I can think of no more appropriate gift for a medical student or indeed for anyone who provides for the sick and injured.
Clif Cleaveland, MD
5 February 2003