Dying in Character: Memoirs on the End of Life

11. “Now I Cultivate the Art of Simmering Memories” Jean-Dominique Bauby and The Diving Bell and the Butterfly

= 254 < chapter 11 “Now I Cultivate the Art of Simmering Memories” Jean-Dominique Bauby and 8LI(MZMRK&IPPERHXLI&YXXIV¾] = I magine waking up to discover you are paralyzed from head to toe, unable to walk, talk, eat, drink, swallow, or breathe. Imagine finding yourself in this situation without preparation, warning, or explanation. You cannot move your hands, which feel as if they are burning hot or ice cold. Your arms and legs exist only to convey unrelenting pain. Your head weighs a ton, and the only movement of which you are capable is blinking your left eyelid, your only means of communicating with the world. You are imprisoned in a body that has become an oppressive diving bell. Imagine being in this torture chamber with full consciousness of what is happening—or not happening. The only escape from the diving bell is through your memory and imagination, which effortlessly take flight. Escape, however, is only momentary and partial. Now imagine being imprisoned in this diving bell for week after week, month after month. Is this nightmare the stuff of science fiction? A Kafkaesque penal colony? A gothic horror story? It is “locked-in syndrome,” the world in which Jean-Dominique Bauby finds himself in his stunning memoir The Diving Bell and the Butterfly. Bauby, the editor in chief of French Elle, suffered a massive stroke on December 8, 1995, when he was forty-three, which resulted in a rare neurological disorder that left him paralyzed. For twenty days he lay in a deep coma, and when he awoke he found himself in a naval hospital = Bauby and The Diving Bell and the Butterfly < 255 at Berck-sur-Mer, on the French Channel coast. In the past, a cerebrovascular stroke in the brain stem, the link between the brain and spinal cord, resulted in merciful death, but now, in Bauby’s droll words in the prologue, improved resuscitation techniques have “prolonged and refined the agony” (The Diving Bell and the Butterfly 4). Blinking The only way to communicate with the world is through blinking, which became Bauby’s method of writing. “You read off the alphabet,” not the ABC alphabet but one based on the frequency of a letter’s use in the French language, “until, with a blink of my eye, I stop you at the letter to be noted. The maneuver is repeated for the letters that follow, so that fairly soon you have a whole word, and then fragments of more or less intelligible sentences ” (The Diving Bell and the Butterfly 20). It is a “simple enough system ,” Bauby adds with mordant understatement, conceding that it works better in theory than in practice. It took him ten months, blinking four hours a day, to complete the memoir. The book reportedly took about two hundred thousand blinks to write; an average word took approximately two minutes. Comparisons are invidious, but unlike Tony Judt and Morrie Schwartz, who become disembodied voices, Bauby cannot even speak. Writing a book under these circumstances is almost as unimaginable as suffering from locked-in syndrome. One problem with writing is that Bauby must depend upon the transcriber’s patience and accuracy. “Crossword fans and Scrabble players have a head start. Girls manage better than boys. By dint of practice, some of them know the code by heart and no longer even turn to our special notebook—the one containing the order of the letters and in which all my words are set down like the Delphic oracle’s (The Diving Bell and the Butterfly 20–21). “Meticulous people ,” he adds, “never go wrong: they scrupulously note down every letter and never seek to unravel the mystery of a sentence before it is complete” (22). Another problem with writing is the difficulty of revising. Writing is hard enough, but how do you have the fortitude to rewrite when you can only blink? Still another problem is that the communication system discourages repartee: “The keenest rapier grows dull and falls flat when it takes several minutes to thrust it home. By the time you strike, even you no longer understand what had seemed so witty before you started to 256 = “Now I Cultivate the Art of Simmering Memories” < dictate it, letter by letter” (71). And a fourth problem is the need to know in advance where you are heading in your narrative, since any pause or indecision would feel interminably long. Many writers can think only with a pen in the hand, or with fingers on a word processor. Bauby must know in advance exactly what he wants to write. “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” (5–6). Given the fiendish difficulty of composition, not to mention the nearly total paralysis of your body, it is remarkable that Bauby is able to write an account of the neurological catastrophe. Astonishingly, he remains in control of the story, never worrying whether he will have the time or energy to complete it. Nor is he worried that his artistic creativity will desert him. The words seem to pour out of him, each word aesthetically perfect, like a Mozart composition. There is never a moment when the narration becomes tedious, boring, or repetitive. One marvels at his unsurpassed powers of observation. The Diving Bell and the Butterfly One also marvels at Bauby’s metaphorical language, beginning with the title of his story. The diving bell captures the sense of being locked in, confined, separated from the rest of the world. As a symbol, the diving bell generally has a positive meaning, allowing divers to descend to great depths that would be otherwise unreachable. Bauby’s diving bell functions in this way, taking him into uncharted territory where he glimpses a strange, surreal world that remains unknown to those who dwell on the surface. The diving bell’s negative meaning, however, predominates in Bauby’s story. The diving bell is a claustrophobic prison from which there is no escape except through his imagination, which takes flight like a butter fly. Bauby’s diving bell recalls The Bell Jar, Sylvia Plath’s semiautobiographical novel in which Esther Greenwood finds herself imprisoned in a glass bell jar, stewing in her own sour air. Early in the story Bauby sees 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” (25). = Bauby and The Diving Bell and the Butterfly < 257 Bauby sustains these two metaphors, diving bell and butterfly, throughout the story. He tells us in the first paragraph that he feels “like a hermit crab dug into his rock” (3). The exhausting exercise of pronouncing the entire alphabet “more or less intelligibly” leaves him feeling “like a caveman discovering language for the first time” (41). He personifies the “chorus line” of his new alphabet, in which letters have a new order of importance . “That is why E dances proudly out in front, while W labors to hold on to last place. B resents being pushed back next to V, and haughty J— which begins so many sentences in French—is amazed to find itself so near the rear of the pack. Roly-poly G is annoyed to have to trade places with H, while T and U, the tender components of tu, rejoice that they have not been separated” (20). The act of blinking becomes the equivalent of weightlifting for him, and his daughter Céleste has turned into a “genuine acrobat” in understanding him (72). His friends are so horrified when they visit him in the hospital that they “are gasping for air like divers whose oxygen has failed them” (93). Bauby doesn’t describe the weeks of grogginess and somnolence as he slowly returned to consciousness from the long coma. At first he believes that he will quickly recover movement and speech. His active mind is busy with a thousand projects, including writing a novel and a play. The discovery that he is now a quadriplegic, confined to a wheelchair, is devastating . “In one flash I saw the frightening truth. It was as blinding as an atomic explosion, and keener than a guillotine blade” (The Diving Bell and the Butterfly 9). Forced to abandon his “grandiose” plans, he clings to the hope that he will be able to wiggle his toes in several years. There is also the possibility that in time he will be able to eat normally, breathe without a respirator, and perhaps have enough breath to make his silent vocal cords vibrate. Are these realistic hopes, or is he still in denial? For now, Bauby’s goal is simply to swallow the overflow of saliva that floods his mouth. He never abandons hope for a partial recovery, never considers the possibility that he will remain imprisoned in his present condition . Nor does he worry about imminent death. One of the many surprises of The Diving Bell and the Butterfly is how quickly Bauby adapts to his new situation. Completely dependent upon others for help, he finds himself infantilized, as we saw in Tony Judt’s and Morrie Schwartz’s end-of-life memoirs. Like Schwartz, who is thirtythree years older, Bauby has conflicting feelings about this dependency. “I 258 = “Now I Cultivate the Art of Simmering Memories” < 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” (16– 17). Unlike Schwartz, who knows he will soon die, and who can remind himself that he has led a long and full life, Bauby has two young children who cannot fathom his situation. Nor can he. Bauby’s worst moment occurs when he is with his ten-year-old son, Théophile, who wishes to play hangman with his father. “I ache to tell him that I have enough on my plate playing quadriplegic” (The Diving Bell and the Butterfly 70–71). Grief surges over Bauby as he realizes he cannot adequately convey his love to Théophile. “There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Théophile. 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” (71–72). Words fail Bauby as a father but not as a writer, and he allows his son’s drawing of the gallows, the rope, and the condemned man to resonate with personal meaning. Bauby believes in a future that he hopes will be better than the present, but he lives primarily in the past. How can one not live in the past when the present is unbearable and the future uncertain? Fortunately, Bauby’s past is filled with rich memories that he is able to recall in extraordinary detail. A gastronome who can no longer eat or drink, he now cultivates the “art of simmering memories.” The art never fails to provide him— and us—with aesthetic pleasure. “You can sit down to a meal at any hour, with no fuss or ceremony. If it’s a restaurant, no need to call ahead. If I do the cooking, it is always a success. The boeuf bourguignon is tender, the boeuf en gelée translucent, the apricot pie possesses just the requisite tartness ” (The Diving Bell and the Butterfly 36). Bauby’s memory is so sharp, his prose style so evocative and sensuous, his wit so trenchant that we forget the writer is conjuring up imaginary delights. His loss is, paradoxically , the reader’s gain. “At the outset of my protracted fast, deprivation sent me constantly to my imaginary larder” (37). Again and again the = Bauby and The Diving Bell and the Butterfly < 259 butterfly of his imagination breaks free from the diving bell of his imprisoned body to describe the garden of earthly delights surrounding him. And yet these joyful memories remind him of his present situation. “Rarely do I feel my condition so cruelly as when I am recalling such pleasures” (17). Bauby’s old life still “burns” within him, but more and more of it is “reduced to the ashes of memory” (77). The Count of Monte Cristo In one of the most curious examples of life imitating art, Bauby recalls a mysterious character in Alexandre Dumas’s The Count of Monte Cristo who eerily foreshadows his own situation. Dumas depicts the shadowy Noirtier de Villefort as the last person with whom one would wish to identify. “Described by Dumas as a living mummy,” Bauby writes, “a man threequarters of the way into the grave, this profoundly handicapped creature summons up not dreams but shudders. The mute and powerless possessor of the most terrible secrets, he spends his life slumped in a wheelchair, able to communicate only by blinking his eye: one blink means yes; two means no” (The Diving Bell and the Butterfly 47). Noirtier de Villefort turns out to be literature’s first—and only—example of locked-in syndrome, although the medical term was not proposed until 1966, more than a century after the publication of Dumas’s novel. Bauby had been reading Dumas’s story before his stroke and planned to write a modern-day version of the novel, with vengeance as the driving force. Not for a moment did Bauby imagine that he would soon be in the identical situation of Dumas’s haunting character. Bauby devotes only two pages to The Count of Monte Cristo, a novel that is more than twelve hundred pages long. Reading Dumas’s story after completing The Diving Bell and the Butterfly, I was struck by the many similarities between Monsieur Noirtier de Villefort and Bauby. The opening description of Noirtier, paralyzed from an apoplectic stroke, resembles Bauby in several ways: he was a “man of immense learning, unparalleled perception and a will as powerful as any can be when the soul is trapped in a body that no longer obeys its commands” (Dumas 654). Like Bauby, Noirtier is a corpse whose eyes disclose an inner life that “was like one of those distant lights which shine at night, to tell a traveller in the desert that another being watches in the silence and darkness” 260 = “Now I Cultivate the Art of Simmering Memories” < (653). Just as Bauby is fiercely attached to his two children, so is Noirtier devoted to his beloved granddaughter, Valentine, who, with the help of a dictionary, is able to understand him. Often referred to as “the invalid,” Noirtier is a “useless burden” in appearance, but his superior intelligence and implacable determination save his granddaughter from a prearranged marriage to a man to whom she is irrevocably opposed. Noirtier also saves her, and himself, from being poisoned by her stepmother. His silence seems to heighten the depth of his emotions, a phenomenon that is also true for Bauby. A look of infinite pain enters Noirtier’s eyes when he is troubled; his eyes light up with joy when he is with Valentine. When he believes, incorrectly, that she is dead, his “motionless grief, his frozen despair and his noiseless tears were something terrible to behold” (1103). We never have access to Noirtier’s thoughts, but he remains one of the most intriguing and admired characters in The Count of Monte Cristo, able to communicate, like Bauby, with those who listen to him. Dumas ends his novel with the words “wait” and hope,” words that also reflect the ending of Bauby’s story. “The Vegetable” In Bauby’s sardonic words, the “gods of literature and neurology” prevented him from writing a revenge novel like The Count of Monte Cristo (48). And yet, ironically, revenge is one of the motives behind the writing of The Diving Bell and the Butterfly. In the chapter mordantly entitled “The Vegetable,” Bauby mentions that six months have passed since his stroke, a period in which he has not responded to the many letters that were accumulating on his dresser. During this time many vicious rumors have circulated about Bauby. “The gossipers were as greedy as vultures who have just discovered a disemboweled antelope. ‘Did you hear that Bauby is now a total vegetable?’ said one. ‘Yes, I heard. A complete vegetable ,’ came the reply” (82). Bauby decides to send a letter to sixty of his friends and associates informing them of his medical situation. “I would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s” (82). He sends out the collective letter every month, not only to remain in touch with those he loves but also to prove his enemies wrong. Bauby never sugarcoats the truth, and he admits that “to keep my mind sharp, to avoid descending into resigned indifference, I maintain a level of = Bauby and The Diving Bell and the Butterfly < 261 resentment and anger, neither too much nor too little, just as a pressure cooker has a safety valve to keep it from exploding” (55). But it is love, not hate, that keeps Bauby alive. Letters to and from his friends enable him to remain connected with the world, an attachment that is essential to his health and well-being. He describes the ritual of having these letters opened, unfolded, and spread out before him as a “hushed and holy ceremony,” and he then elaborates on the spiritual implications of reading each letter carefully. “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?” (83). Insights such as this abound in Bauby’s story. Reading and writing allow him to maintain his personal and professional identity, his self-worth and self-esteem. Reading and writing also give him something to do to pass the time. He saves all the letters he receives, those discussing the meaning of life and others that simply relate the details of daily life: “roses picked at dusk, the laziness of a rainy Sunday , a child crying himself to sleep” (83). He hoards his letters “like treasure ” and dreams of a day when he will be able to “fasten them end to end in a half-mile streamer, to float in the wind like a banner raised to the glory of friendship” (84). That streamer, celebrating the glory of friendship , the joy of everyday existence, and the power of resiliency, appears in the form of The Diving Bell and the Butterfly, forged from letters created blink by blink. Sunday is the most difficult day of the week for Bauby because there is no mail, no physical therapist, no speech pathologist, no psychologist . On Sunday he feels totally locked in, especially if he is unfortunate enough to have no visitors. On Sunday he looks futilely at his books and realizes that no one will read them to him. The Diving Bell and the Butterfly moves forward in time to the present, August 1996, when the story ends; but it also circles backward to that fateful December day in 1995 when life as Bauby knows it ends forever. In the penultimate chapter, “A Day in the Life,” an allusion to a Beatles song, he recalls the ordinary events of the day of his stroke—shaving, dressing, drinking a hot chocolate—that now seem miraculous to him. 262 = “Now I Cultivate the Art of Simmering Memories” < His memory becomes blurred as he describes the onset of the stroke, but not for a moment during that day does he suspect he is dying. “A Day in the Life” ends ominously, with the sentence “And then I sink into a coma” (127). The final chapter, affirmatively entitled “Seasons of Renewal,” records Bauby’s new life sitting in a wheelchair in the hospital, making progress. “I can now grunt the little song about the kangaroo, musical testimony to my progress in speech therapy” (130). He refers to his transcriber, Claude, reading to him the pages of his book. “Some pages I am pleased to see again. Others are disappointing. Do they add up to a book?” (131). He never answers this question. He ends by raising three questions about the possibility of recovery followed by two brief sentences. “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” (131–32). Do Bauby’s pages add up to a book? The French edition of The Diving Bell and the Butterfly went on to become a number one best seller across Europe, selling millions of copies. It was later made into a film, directed by Julian Schnabel, which was nominated for four Academy Awards in 2008. And Bauby’s recovery? Two days after the publication of the book he died of pneumonia. If we read The Diving Bell and the Butterfly biographically, the portentous penultimate chapter, which describes the transition from life to death, is a more fitting conclusion than the overly optimistic final chapter , which describes a recovery that never takes place. The unexpectedly jaunty closing line of the story, “I’ll be off now,” contains a dark irony suggestive of death. There is neither fear nor apprehension in Bauby’s final words, only an odd, laconic farewell. Bauby captures, both literally and figuratively, locked-in syndrome. The Diving Bell and the Butterfly is both an illness narrative and an endof -life memoir. As an illness narrative, the story demonstrates the truth of Susan Sontag’s statement at the opening of Illness as Metaphor: “Illness is the night-side of life, a more onerous citizenship” (3). Only a few unlucky people will find themselves in locked-in syndrome, but everyone has felt at times withdrawn, helpless, isolated, and misunderstood. If Bauby can find a way to communicate with the world, to make himself understood, so may those suffering from less extreme illnesses and = Bauby and The Diving Bell and the Butterfly < 263 injuries. Bauby is, in Arthur Frank’s terms, the “wounded storyteller” who turns illness into story. “As wounded, people may be cared for, but as storytellers, they care for others. The ill, and all those who suffer, can also be healers. Their injuries become the source of the potency of their stories” (The Wounded Storyteller xii). Throughout The Diving Bell and the Butterfly Bauby’s voice, simultaneously clinical and poetic, remains ironic and at times cynical. He refers to the “sententious” tone of the neurologist who tells him that getting dressed is “good for the morale” (8). He describes the ophthalmologist who sews his right eyelid shut, to prevent the risk of an ulcerated cornea , as arrogant and brusque; when the physician asks him whether he sees double, Bauby feels like replying, “Yes, I see two assholes, not one” (55). He has nicknames for the hospital staff: Blue Eyes, Big Bird, David Bowie, Prof, Rambo, and Terminator, the last two of whom are “not exactly models of gentleness.” He singles out Thermometer: “her dedication would be beyond reproach if she did not regularly forget the implement she thrusts under my armpit” (111). And yet by the end of the story he acknowledges his affection for everyone: “I realized that I was fond of all these torturers of mine” (111). Final Dignity Bauby died in character, using his available time to complete his story. Writing was one of his major adaptive strategies during his illness— probably the one he valued the most. The world of fashion magazines, with which he was familiar, seems worlds apart from the nightmare of locked-in syndrome, but he was able to bridge the gap through writing. Bauby never succeeded in escaping from the diving bell of locked-in syndrome, but we remember him for the dazzling literary butterfly that was wrought with suffering. Elisabeth Kübler-Ross saw the butterfly as a symbol of the transition from death to life; just as a butterfly emerges from a cocoon, so does a dying person, in her view, escape from a body that is no longer needed. The butterfly symbolizes in literature, mythology, and folklore not only rebirth but also the soul. Bauby’s butterfly affirms the power of the imagination to survive in the most harrowing circumstances . The Diving Bell and the Butterfly is never didactic. It teaches us nothing, and yet we learn much from it. Early in the story Bauby wonders 264 = “Now I Cultivate the Art of Simmering Memories” < “what conclusions anthropologists of the year 3000 will reach if they ever chance to leaf through these notebooks” (21). Only a person contemplating a posterity self would ask this question. If the anthropologists in the next millennium respond the way literary critics have responded in this millennium, they will recognize The Diving Bell and the Butterfly as a work of incomparable genius. A memoir of rare lyricism, beauty, and irony, The Diving Bell and the Butterfly explores deftly the heights and depths of human existence—and it shows how one’s life can be changed with the blink of an eye. ...