The Diving Bell and the Butterfly

“Up until [my stroke on December 8], 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. 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, hismind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.” 

The biting sarcasm that pervades this passage showcases Bauby’s slightly cynical and highly entertaining sense of humor, which allows him to indulge in self-pity that—by virtue of its self-deprecation and sarcastic wit—does not veer into histrionics. We see here that he uses this sarcasm as a way to ingratiate himself to his reader, to render his difficulties with a measure of wit and humor that never begs for pity or dwells in victimhood. 

“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.” 

Here, again, we see Bauby’s wicked sense of humor bubbling to the surface, as he likens a full understanding of his new condition as “good news.” This quote also firmly establishes the setting of the story. It importantly occurs at the outset—in the prologue—in order to give the reader some concrete information before the narrative will quickly veer into flights of fancy and imagination. 

“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.” 

Here, we have the diving bell and the butterfly appearing in the same sentence. Bauby thus inaugurates the central tension that animates much of the memoir’s thematic thrust. The diving bell, as a metaphor for locked-in syndrome, will remain stalwart and almost impenetrable in its oppression. However, there are moments in which it loosens, and frees the “butterfly” of his mind to take flight. Here, the butterfly clearly symbolizes the intact agility and strength of his mind and his spirit. Encumbered by the diving bell and fragile, yes, but still aliveandyearning to be free. 

“…I still could not imagine any connection between a wheelchair and me. No on had yet given me an accurate picture of my situation, and I clung to the certainty, based on bits and pieces I had overheard, that I would very quickly recover movement and speech. Indeed, my roving mind was busy with a thousand projects: a novel, travel, a play, marketing a fruit cocktail of my own invention. (Don’t ask for the recipe; I have forgotten it.)” 

In this first chapter, Bauby depicts the difficulty with which he accepted his new life. The fact that he made no connection between the wheelchair and himself speaks to his as-yet failure to comprehend the permanence and gravity of his situation. This makes the plans that he lists in this passage all the more poignant. The casualness of these ordinary hopes and dreams—not lofty nor overly ambitious, but small and common—illustrates the totality of what his stroke has taken from him. Not only are big plans out of reach for him, but the small and workaday ones are inaccessible too.

“Yet all of these lofty protections are merely clay ramparts, walls of sand, Maginot lines, compared to the small prayer my daughter, Céleste, sends up to her Lord every evening before she closes her eyes. Since we fall asleep at roughly the same hour, I set out for the kingdom of slumber with this wonderful talisman, which shields me from all harm.”

Here, Bauby has just finished listing all of the prayers, even the ones across the globe, that he knows are being uttered on his behalf. All of these prayers, some of which are undertaken by strangers, pale in comparison with the simple prayer that his dearly beloved daughter Celeste utters for him every night. He regards this prayer as the most precious and comforting of all. 

“A domestic event as commonplace as washing can trigger the most varied emotions. 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 though the lather a nurse’s aid spreads over my cheeks.” 

Here, Bauby depicts the nuance of emotion and grief that now attends such a mundane and everyday activity of getting clean. No longer able to perform the function for himself, he has been rendered an infant by his illness. He admits to occasionally enjoying being babied, but the more salient emotion is that of grief: grief at the loss of such a simple, everyday thing that he once took for granted. 

“Like the bath, my old clothes could easily bring back poignant, painful memories. But I see in the clothing a symbol of continuing life. And proof that I still want to be myself. If I must drool, I may as well drool on cashmere.” 

Here, Bauby elaborates on his desire to wear his own clothes while he performs physical therapy. His gentle self-deprecation reveals both his stubborn will and his willingness to accept and adapt to his new circumstances. 

“And then one afternoon as I confided my woes to [Empress Eugénie’s] likeness, an unknown face interposed itself between us. Reflected in the glass I saw the head of a man who seemed to have emerged from a vat of formaldehyde. His mouth was twisted, his nose damaged, his hair tousled, his gaze full of fear. One eye was sewn shut, the other goggled like the doomed eye of Cain. For a moment I stared at that dilated pupil, before I realized it was only mine.” 

In this quote, Bauby’s intricate flight of fancy with the Empress is rather brutally interrupted by his own visage. Bauby’s initial inability to recognize himself fills the reader with the poignancy of loss, and draws Bauby’s struggle with his own identity and his own body into sharp relief. His stroke has produced a grievous and reverberating fracture in his life, one that has rendered himself literally unrecognizable.  

 “And to complete the picture, 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.” 

Bauby’s sardonic and humorously cynical barb about himself and other patients like him—that they “spoil the view”—here illustrates his awareness that his new body is now commonly regarded as a grotesquerie, an eyesore, and a burden. However, this remark is couched within sensitive and finely-drawn metaphors for himself and others like him, as they are “broken-winged birds” and “ravens of doom”. This clash of brutal honesty and tender sensitivity is a hallmark of Bauby’s voice, and also indicative of the central thematic conflict of the text. 

“Quite apart from the practical drawbacks, this 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.”

This is a recurrence of the motif of the diving bell. He further develops it as a metaphor for locked-in syndrome, and intimates that the connection that Sandrine forges with him eases some of the isolation that the syndrome has imposed upon him. 

“Sometimes the phone interrupts our work, and I take advantage of Sandrine’s presence to be in touch with loved ones, to intercept and catch passing fragments of life, the way you catch a butterfly.”

Quickly following on the heels of the diving bell, the butterfly makes another appearance here. Bauby fleshes out the butterfly as a symbol of life, in all its fragility, wonder, and fleeting beauty.

“Sweet Florence refuses to speak to me unless I first breathe noisily into the receiver that Sandrine holds glued to my ear. ‘Are you there, Jean-Do?’ she asks anxiously over the air. And I have to admit that at times I do not know anymore.”

Here, Florence, the lover for whom Bauby left his wife, makes an appearance. Her question, and the musing that it produces within him, showcases the struggle with identity and presence that locked-in syndrome has foisted upon him. In one sense, he is still himself, as his mind has remained intact. In several crucial other senses, though, he is no longer himself and his former life has been irrevocably taken from him. This conflict leaves Bauby to struggle with the open question of his identity.

“Some evenings I have the impression that Grandpapa Noirtier patrols our corridors in a century-old wheelchair sadly in need of a drop of oil. To foil the decrees of fate, I am now planning a vast saga in which the key witness is not a paralytic but a runner. You never know. Perhaps it will work.”

Here, Bauby evokes the only other victim of locked-in syndrome known to literature: The Count of Monte Cristo’s Grandpapa Noirtier. In delicately ominous terms that still manage to be playful and imaginative, Bauby paints an image of the character patrolling the halls. He then playfully invokes his superstitious decision to abandon his plans to write an iconoclastic and subversive version of the famous book (planned prior to his stroke) in favor of writing a story that might court a miraculous healing for himself instead. 

 “The play follows Mr L’s adventures in the medical world and his shifting relationships with his wife, his children, his friends, and his assocaiates from the leading advertising agency he helped to found. Ambitious, somewhat cynical, heretofore a stranger to failure, Mr. L. takes his first steps into distress, sees all the certainties that buttressed him collapse, and discovers that his nearest and dearest are strangers. We would carry this slow transformation to the front seats of the balcony: a voice offstage would reproduce Mr. L.’s unspoken inner monologue as he faces each new situation.”

In this quote, Bauby provides some specific details about the play that he hopes to write. In the play, Mr. L. is a stand-in for himself. This quote states what he hopes to depict and accomplish through this work of art. With Mr. L. as his stand-in, he intimates his own thoughts and preoccupations. Through the specification that Mr. L.’s voice would emanate from offstage, he showcases the ongoing struggle with identity that the syndrome has ignited inside of him.

“Théophile and Céleste are very much flesh and blood, energetic and noisy. I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders. As he walks, Théophile dabs with a Kleenex at the thread of saliva escaping my closed lips. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions. As soon as we slow down, Céleste cradles my head in her bare arms, covers my forehead with noisy kisses, and says over and over, ‘You’re my dad, you’re my dad,’ as if in incantation.”

In searing, poignant detail, Bauby depicts his shifting relationship with his children. The bright, tender detail with which renders his children underscores his deep love for them. The anxiety that presses upon them, and the new ways that they interact with his body, drive home the irrevocable and unsurpassable fracture that locked-in syndrome has foisted upon his relationship to them.

“Don’t be scared, little man. I love you. Still engrossed in the game, he moves in for the kill. Two more letters: he has won and I have lost. On a corner of the page he completes his drawing of the gallows, the rope, and the condemned man.”

In this quote, the hangman in Théophile’s game is a symbol for Bauby himself. Théophile, in his innocence, cannot recognize the connection between the image of the condemned man and his father. And Bauby, a doting father, does not see resisting his son’s desire to play the game as an option. This quote, in is quiet irony and bittersweet tenderness, captures the complexity of Bauby’s emotional life.

 “They have left. The car will already be speeding toward Paris. I sink into contemplation of a drawing brought by Céleste, which we immediately pinned to the wall: a kind of two-headed fish with blue-lashed eyes and multicolored scales. But what is interesting in the drawing is its overall shape, which bears a disconcerting resemblance to the mathematical symbol for infinity. Sun streams in through the window. It is the hour when its rays fall straight upon my pillow. In the commotion of departure, I forgot to signal for the curtains to be drawn. A nurse will be in before the world comes to an end.”

The resemblance that Céleste’s fish bears to the infinity symbol here does the poetic work of mooring the earthbound to the divine. Through this deceptively simple and keenly-observed paradox, Bauby forwards the notion that we experience the divine through the very ordinary love that we forge for each other. He also unites the treasured innocence of his daughter—an experienced and understood thing—withthe transcendent, mysterious, and somewhat opaque idea of the infinite.

“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.” 

This quote is a far cry from the light-hearted flights of fancy which characterized the book’s earliest chapters. Here, we see Bauby coming into a full understanding and acceptance of his grievous loss. 

“I receive remarkable letters. They are opened for me, unfolded, and spread out before my eyes in a daily ritual that gives the arrival of the mail the character of a hushed and holy ceremony. I carefully read each letter myself. Some of them are serious in tone, discussing the meaning of life, invoking the supremacy of the soul, the mystery of every existence. And by a curious reversal, the people who focus most closely on these fundamental questions tend to be people I had known only superficially. Their small talk had masked hidden depths. Had I been blind and deaf, or does it take the harsh light of disaster to show a person’s true nature?” 

Here, Bauby recounts the mysterious phenomenon of receiving intimate, soul-stirring letters that pose fundamental questions about human existence from people he was only superficially connected to in his previous life. We see a lovely duality at play here that develops the life- and humanity-affirming idea that each person holds untold depths and an entire world unto themselves.

“I had a very young neighbor who was given a velveteen duck equipped with a sophisticated detection device. It emitted a reedy, piercing quack whenever anyone entered the room—in other words, twenty-five times a day. Luckily the little patient went home before I could carry out my plan to exterminate the duck. I am keeping my scheme in readiness, though. You never know what horrors tearful families may bestow on their young.”

Here, Bauby reveals the humorous irony that animates the chapter titles (“The Duck Hunt”). His penchant for biting sarcasm and dark humor is on full display.

“Far from such din, when blessed silence returns, I can listen to the butterflies that flutter inside my head. To hear them, one must be calm and pay close attention, for their wingbeats are barely audible. Loud breathing is enough to drown them out. This is astonishing: my hearing does not improve, yet I hear them better and better. I must have butterfly hearing.”

After reciting the torments his hyper-sensitive ear brings him, Bauby returns to the central motif of the butterfly. His choice to insert this image of hope and beauty as a coda to his depiction of excruciating suffering underscores his indomitable will to hope and his ultimate desire to seek solace in the persisting beauty and grace of life, despite the harrowing difficulties that he now faces.

“In Brittany, a pack of children returns from the market on bikes, every face radiant with laughter. Some of these kids have long since entered the age of major adolescent concerns, but along these rhododendron-lined Breton roads, everyone rediscovers lost innocence. This afternoon, they will be boating around the island, the small outboards laboring against the current. Someone will be stretched out on the bow, eyes closed, arm trailing in the cool water. In the south of France, a burning sun drives you to seek the cool depths of the house. You fill sketchbooks with watercolors. A small cat with a broken leg seeks shady corners in the priest’s garden, and a little farther on, in the flat Camargue delta country, a cluster of young bulls skirts a marsh that gives off a smell of aniseed.”

Here, Bauby renders, in graceful and rich detail, his imaginings of what life across France must be like for various people on a Sunday afternoon. The lushness of his imagery underscores the persisting power of his imagination. This passage is also inescapably imbued by a sense of longing and grief: although Bauby can so richly imagine this scene, he remains trapped within his body and will forever be unable to experience such a scene of both sensory grandeur and simple ordinariness again.

“For a few minutes or a few hours I would cheerfully have killed them. Later still, as time cooled my fiercest rages, I got to know them better. They carried out as best they could their delicate mission: to ease our burden a little when our crosses bruised our shoulders too painfully.”

Here, Bauby reveals the inner journey he underwentin regard to his medical staff. He intimates that, in the earliest stages of his stay at the hospital, while he was still getting used to the pains of his illness and the interactions with the medical staff that it necessitated, he became murderously enraged at his caretakers. However, upon closer consideration of their humanity, and the nobility with which they undertook their duties, he began to view them with a compassionate recognition of their full humanity.