Jean-Dominique Bauby’s The Diving Bell and the Butterfly has become an inspirational book for many in the twenty-plus years since its initial publication. A story of humor, grace, and resilience in the face of immense loss and isolation, Bauby’s account of his herculean fight to communicate, connect, examine his own past, and push against his new limits ultimately argues that the human spirit, in times of need, can persevere through extraordinary (and extraordinarily difficult) circumstances. Bauby also argues that the more impossible the task, the more impossible feats the person facing that task has the potential to accomplish.
Though Bauby’s memoir is not technically an illness memoir or an in-depth look at medicine, the level of resilience, determination, and indeed courage Bauby shows after his stroke is incredible given the poor prognosis he’s given. Bauby’s circumstances are extreme—and the measures he must take and the methods he must develop to overcome them are similarly intense. When Bauby’s brain stem was severed from his spinal cord after a massive stroke, he fell into a coma for over a month. Upon waking, he found himself paralyzed—breathing, urinating, and eating through tubes, with his right eyelid stitched shut and his left the only part of his body he could move. Bauby drew strength for a while from his doctors’ refusal to answer definitively whether he’d ever regain any real control of his body—but as the months passed and Bauby struggled through intensive physical and speech therapy, he realized that he’d never have a normal life again. By the time he began composing The Diving Bell and the Butterfly, he had regained some control over his neck muscles and the ability to puff out—without any real sound quality—the letters of the alphabet. His resilience was only just beginning to be tested, and yet he continued to push himself to the limit by deciding to begin composing a memoir.
The extraordinary story of how Bauby composed his memoir is relayed modestly and minimally. He explains that with the help of his speech therapist Sandrine and interpreter Claude, he was able to blink in response to someone uttering the correct letter of the alphabet, as whoever was “conversing” with Bauby or transcribing his sentences recited, over and over, the letters of the French alphabet in order from most to least common. Bauby writes that he would often spend hours each night composing sentences in his head, getting them ready to be relayed the following day. His determination and resilience—even in the face of a physical task which, given his extremely limited range of motion, had to be boring at best and exhausting at worst—seem almost superhuman, but are eventually revealed to have roots in the most human impulse of them all: not just to endure, but to truly live. Bauby does not expressly state why he was so determined to push himself to the limits of his capabilities until the very last pages of the book. He writes then that he has been trying to find a “key” that will allow him to open up his diving bell. Unable to see one in the world around him, he has had to manufacture his own. With no way out of his situation, the only way, he posited all along, was through it: by making the most of his time, his unique experience and viewpoint, and the resources at his disposal.
Bauby’s desire not to escape his circumstances, but rather to make the most of them—and to attempt to push through them and find a new way of being—speaks to his own extraordinary determination. If he can do it, the memoir ultimately suggests, others struggling with illness, isolation, or adversity can, too. There may not be miracles or even cures for the things that ail humanity—but through determined resilience and conscious, steady work, there may be “keys” that unlock unknown and extraordinary potential.
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Resilience and Determination Quotes in The Diving Bell and the Butterfly
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 ambitions.
One day, for example, I can find it amusing, in my forty-fifth year, to be cleaned up and turned over, to have my bottom wiped and swaddled like a newborn’s. I even derive a guilty pleasure from this total lapse into infancy. But the next day, the same procedure seems to me unbearably sad, and a tear rolls down through the lather a nurse’s aide spreads over my cheeks. And my weekly bath plunges me simultaneously into distress and happiness. The delectable moment when I sink into the tub is quickly followed by nostalgia for the protracted immersions that were the joy of my previous life.
A strange euphoria came over me. Not only was I exiled, paralyzed, mute, half deaf, deprived of all pleasures, and reduced to the existence of a jellyfish, but I was also horrible to behold. There comes a time when the heaping up of calamities brings on uncontrollable nervous laughter—when, after a final blow from fate, we decide to treat it all as a joke. My jovial cackling at first disconcerted [the Empress] Eugénie, until she herself was infected by mirth. We laughed until we cried.
A niche must be found for us, broken-winged birds, voiceless parrots, ravens of doom, who have made our nest in a dead-end corridor of the neurology department. Of course, we spoil the view. I am all too conscious of the slight uneasiness we cause as, rigid and mute, we make our way through a group of more fortunate patients.
By means of a tube threaded into my stomach, two or three bags of a brownish fluid provide my daily caloric needs. For pleasure, I have to turn to the vivid memory of tastes and smells, an inexhaustible reservoir of sensations. Once, I was a master at recycling leftovers. Now I cultivate the art of simmering memories.
Quite apart from the practical drawbacks, [my] inability to communicate is somewhat wearing. Which explains the gratification I feel twice daily when Sandrine knocks, pokes her small chipmunk face through the door, and at once sends all gloomy thoughts packing. The invisible and eternally imprisoning diving bell seems less oppressive.
For half an hour, the alarm on the machine that regulates my feeding tube has been beeping […] I cannot imagine anything so inane or nerveracking as this piercing beep beep beep pecking away at my brain. As a bonus, my sweat has unglued the tape that keeps my right eyelid closed, and the […] lashes are tickling my pupil unbearably. And to crown it all, the end of my catheter has become detached and I am drenched. […] Here comes the nurse. Automatically, she turns on the TV. A commercial, with a personal computer spelling out the question: “Were you born lucky?”
“How do you feel, Pop?” asks Théophile.
His pop’s throat is tight, his hands are sunburned, and his bottom hurts from sitting on it too long, but he has had a wonderful day. And what about you kids, what will you carry back from this field trip into my endless solitude?
At the Café de Flore, one of those camps of Parisian snobbery that send up rumors like flights of carrier pigeons, some close friends of mine overheard a conversation at the next table.
“Did you know that Bauby is now a total vegetable?” said one [gossiper.]
“Yes, I heard, a complete vegetable,” came the reply. […] The tone of voice left no doubt that henceforth I belonged on a vegetable stall and not to the human race. […] I would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s.
Thus was born a collective correspondence that keeps me in touch with those I love. And my hubris has had gratifying results. Apart from the irrevocable few who maintain a stubborn silence, everybody now understands that he can join me in my diving bell, even if sometimes the diving bell takes me into unexplored territory. I receive remarkable letters. […] I carefully read each [one] myself. […] I hoard all these letters like treasure.
This afternoon, Claude (the young woman to whom I am dictating this book) and Brice are with me. I have known Claude for two weeks, Brice for twenty-five years. It is strange to hear my old partner in crime telling Claude about me. My quick temper, my love of books, my immoderate taste for good food, my red convertible—nothing is left out. Like a storyteller exhuming the legends of a lost civilization.
[Claude’s] purse is half open, and 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.
