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The Diving Bell and the Butterfly and the Oceans of the Mind: A Book Commentary of Jean-Dominique Bauby’s The Diving Bell and th

mcrepeau's picture

Michelle Crepeau

Prof. Grobstein

Biology 202-Neurobiology and Behavior

16, May 2008


The Diving Bell and the Butterfly and the Oceans of the Mind: A Book Commentary of Jean-Dominique Bauby’s The Diving Bell and the Butterfly-A Memoir of Life in Death

Life comes at us quickly, suddenly and often without mercy. In the blink of an eye tragedy can reduce an active, vivacious person to an immobile, isolated shell in the physical world. However, as is sometimes the case, the mind does not always follow the body into deterioration, but remains perfectly intact, a drifting buoy inside the rusty hulk of a sinking ship. In December of 1995 famed editor of the French ELLE magazine, forty-three-year-old Jean-Dominique Bauby found himself trapped in just such a catastrophe. After suffering a major stroke, Bauby awakens from a coma only to find himself trapped in a living dream. Confined to a quadriplegic body with only minimal feedback from the outside world and from his nervous system below the head, the once gregarious Bauby finds himself isolated from the world, his only mode of communication the blinking of his left eye. A victim of the rare condition known as “locked-in syndrome” Bauby must learn to adapt to existing in a world in which he is barely considered living.

Powerful, eloquent, and evocative Bauby’s memoir The Diving Bell and the Butterfly provides a rare, first-handed case study for the rare and dramatic condition of “locked-in syndrome”. The memoir effectively explores the status of a living central nervous system in relative isolation from its environment and from other parts of the nervous system, where the story that the I-function, the seat of objective consciousness, extrapolates is both limited by the sensory restrictions inherent to the condition and liberated by the ability, need and desire to self-generate and incorporate sensory information, both mundane and fantastical into the perpetual story of life. This fascinating account not only delves into the depths of the power of the human imagination, exploring implications both disturbing and intriguing regarding the mercurial nature of “reality” as dictated by the I-function, but also, explores the nature of what happens to individual identity when brain and body become disconnected from one another.

The “I-function” is believed to be the most active during REM sleep. Here, liberated from the laborious chore of piecing together bits and pieces of sensory input from both inside and outside the nervous system into a cohesive story and picture of reality, the “I-function” is allowed to experiment and tryout new stories which may bend, modify or straight out break the expected laws of “reality” that are put into place during the hours of lucidity. This activity is referred to as dreaming and in our dreams we are able to leave the confines of the inhibited, physical body behind and to explore other scenarios at will. Locked-in syndrome it would seem places the “I-function” of an individual in a perpetual state of dreaming, where confines of inhibited and unresponsive body are transcended and reality can be transmuted from one vignette to another without need for “logical” context. Whether, a conscious authorial choice or a reflection of the state of the author’s existence at the time, or perhaps both, one of the most distinct qualities of the The Diving Bell and the Butterfly is the style in which it is written. For, in this text Bauby’s day dreams blend together with specific accounts of daily routines and encounters, until the distinction between fact and fancy are rendered virtually non-existent:

“I could spend whole days at Cinecittà. There, I am the greatest director of all time…or else I dissolve into the landscape and there is nothing more to connect me to the world than a friendly hand stroking my numb fingers” (29)

Slipping artfully between time and spaces, Bauby’s account of his first six months of being “locked in” are mercurial and ephemeral presented to the reader in no particular order and without a particular sense of chronological or logical narrative organization. Instead, the reader drifts at the whim of Bauby’s mind, streaming with him through the flight of his own consciousness, as the butterfly of his mind flits from one topic to another with each chapter. Sometimes sad, sometimes angry, sometimes touched with whimsy and a profound sense of peace, Bauby’s story is more a transcript of dreams than a record of fact, for as Bauby says of comas “Since you never return to reality, your dreams don’t have the luxury of evaporating” (49).

However, despite the dreamlike narration of the memoir there persists a grounded scientific understanding for the mercurial and hallucinatory perspective which Bauby holds on life. Unable to eat or drink by himself, his nutrition limited to a gross cocktail of nutrients force fed directly into his digestive system, Bauby’s is an existence starved for the variety and variation of experience which arises from the external world. Thus, his disembodied brain is left to produce its own feasts of sensory experience, producing for him a plethora of phantom sensations taken from stored sensory memory: “For pleasure, I have to turn to the vivid memory of tastes and smells, inexhaustible reservoir of sensations” (36). Although, the reader is left unsure as to the extent of the effect that these sensory memories have on Bauby’s experience i.e. whether or not these sensations are merely visual and auditory memories which are invoked through internal language or whether they are experienced in a more hallucinatory way where actual sensation of taste and smell are generated by the brain and perceived as actual external input, the reader is nevertheless convinced of the extraordinary powers of the imagination and the detail with which the “I-function” is able to create stories on an otherwise blank page.

What is particularly gripping about the implications of these types of descriptive passages in the book, however, is the idea that hallucinatory activity, which generally is considered the result of a breakdown in corollary discharge reporting units between portions of the nervous system, can be intentionally prompted by the nervous system. This idea functions in the same vain of though as how we interpret the origins of hallucinations which occur as products of sensory deprivation, in which the nervous system seems to actively create and misrepresent internal input just to perpetuate the internal story of the I-function. The reader is thus left to ponder the motivations of the human nervous system and the implications surrounding the brain’s, not just ability, but desire to actively produce and misrepresent inputs which reflect aspects of an external reality.

The reader is also informed bit by bit that Bauby’s case is atypical in that he retains some, although minimal, usage of his neck and tongue and is able at one point to grunt out the entire alphabet. Thus, we are aware, as Bauby is aware, that his isolation from the sensory feedback from his own body and, through his body, the parts of the outside world, is not complete. He still retains some residual connection to motor and sensory neurons above the brain stem, where the neurological damage occurred. In fact, Bauby’s nervous system below his brainstem is still functioning and operating amongst itself, with central pattern generators, and corollary discharge units still intact. After all, Bauby still breaths through his own lungs, becoming increasingly less dependent on a respirator, his own heart beats for itself, and his lifeless limbs are still able to spasm and retract on their own (8). In short, like Christopher Reeves, the majority of Bauby’s nervous system is intact and receptive to both external and internal inputs and outputs; however, the damage in the brain stem has created a rift in communication between the brain and the body. Vital connections have been broken and the brain no longer receives reports as to the activity of the body at large and the body at large can no longer respond to auditory, visual or other mentally derived inputs.

Yet, this mind/body isolation is itself a particular type of input which characterizes how the “I-function” in the brain deals with itself. For example, Bauby describes how “My hands, lying curled on the yellow sheets, are hurting, although I can’t tell if they are burning hot or ice cold” (5). In this scenario, corollary discharge reports between the hands and the brain have been disrupted and rendered virtually non-existent. However, the apparent non-existence of a limb, or more accurately the lack of the limb’s discreet reporting neuronal units, defy the expectations of the brain which registers a dramatic mismatch between corollary discharge reports, or lack there of, with other inputs regarding the state of the particular part of the body. For instance, Bauby’s brain no longer receives input about the state of his right hand from the corollary discharge units of the body which report on the hand, yet Bauby still knows that the hand is there, He can visually see it and is told by others that the hand exists and is capable of movement (5). Ultimately, this mismatch must be reconciled in the story of the “I-function” which generates the unspecific notion of pain to account for these conflicting signals. Yet, the information that states that the hands are in pain, or are in fact on fire or on ice, are erroneous since the brain is not receiving information from the hand directly but rather indirectly through auditory and visual affirmation. In result, Bauby’s body fabricates stories about itself. This fabrication of the role of the body in the story of the “I-function” is yet again another example of the power of the human imagination and of the desire for the “I-function” to tell a story. This is a desire apparently so strong as to fabricate contexts for gaps in the story. The best hypothesis in regards to reality is often ignored in favor of the best story for reality.

However, if the reality of the body/mind dichotomy is so mercurial than what becomes of objective representation of the “self” which the “I-function” encapsulates? To Bauby, “He” is most definitely to be found in the portion of his brain which objectifies and accumulates those aspects of being that constitute the self. His physical body has become an alien entity, a virtual prison, the “diving bell” which binds him and repels him, until he ultimately fails to recognize it as a part of himself:

“Reflected in the glass I saw the head of a man who seemed to have emerged from a vat of Formaldehyde…For a moment I stared at the dilated pupil, before I realized it was only mine”(Bauby 24-25).

However, the very revulsion and disconnect Bauby feels towards his physical body, the more immersed he becomes in his world defined by the mind alone, the more the role of his “absent” body becomes augmented in his identity. For this editor and ambassador of fashion, a man entrenched in the nuances of people, of their bodies, and of various modes of communication, finds that he can no-longer squeeze the hand of his physical therapist no matter how many times he imagines “crushing her knuckles” or entertains the “illusion that I am moving my fingers” (15), nor can he achieve even the barest semblance of the acrobatics of the tongue without great effort. Although, his perception of his physical body has changed into to something warranting resentment and nostalgia, the role it played in determining who he was in the story of the “I-function” i.e. the physical behaviors, mannerisms and aspects of his life mediated by his body has only been augmented by its detachment. Thus, although the physical body has been detached from the seat of consciousness in the brain its importance in his definition of who he is has only increased.

Not only has the state of his own body and its importance in determining who he is to himself changed through his own disconnection from it, but the role he plays in the “I-function” derived stories of others has also been altered drastically by his paralysis. For all effective purposes Bauby sees himself as being regarded as a vegetable by the vast majority of orderlies and physicians which attend to him. Although, the objectionable, communicative part of himself still exists in full, the medium through which this part communicates with others is compromised, virtually eliminated unless one is patient enough to learn and listen to Bauby’s system of blinking. In result, the Bauby of the mind is often overlooked, ignored, his existence surmised in the drool dribbling down his chin from his unhinged mouth, or in the nitrogenous waste left by his uncontrolled bladder. Ironically, the state of his body becomes the representation of Bauby in the minds of many of his caregivers, with the exception of a handful of nurses, therapists, and the typist of this novel. Yet, the unresponsive body becomes objectified, something less than human whose needs, even of such a basic nature as to be given a fresh bedpan, are often ignored and neglected (99-102)

However, the most touching and saddening portions of this book are those sections which deal with the alienation Bauby feels from his family and friends and how the expectancy of what their father, lover, and friend is in their individual stories of reality are inconsistent with the present reality. On the one hand, Bauby vigorously continues to prove to the world at large that his “…IQ was still higher than a turnip’s” (82) and passionately maintains the image of himself to his family and friends, the proof that “HE” is still there through loyal correspondence via mail. Through his letters to his family and friends, Bauby is able to retain a piece of his old life and his old identity and place in the lives of others. He keeps himself alive and vivid at least in imagination. However, it is clear, to none more agonizingly so than to Bauby himself, that the “He” in his head is not the complete identity, the complete story of Bauby. The mannerisms and idiosyncrasies of physical behavior (products more of central pattern generators and the extended nervous system than the “I-function”) that once made him a physically identifiable entity to his family no longer exist. Thus, part of Bauby in the minds of his loved ones no longer exists, and since the portion of himself, the internal Bauby, is largely unable to communicate himself to others, the summation of his existence is an alien mismatch between expectation and current input.

Thus, through all Bauby’s reflections, and recollections and existential mediation on his life past and present, on the meaning of stories and reality, the most poignant pieces of his memoirs are those which describe this schism in identities in the stories of his loved ones, a schism which he is only too acutely aware of. The climax of the story, if there is a climax to be had, occurs quietly in the 17th chapter. Here on Father’s day the identity of “father” becomes something alien and awkward in the minds of Bauby’s children:

“As he walks, Théophile dabs with a Kleenex at the thread of saliva escaping my closed mouth. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions…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…I, his father have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me” (69-71).

What “father” means in the story of reality to Bauby’s children has become drastically altered. Their expectancy as to what “father” is can no longer be met by the “father” placed in front of them. Thus, they must readjust their expectancy of what “father” is, they must explore “father” both physically and mentally, puzzle him out, carefully and patiently as with an unknown substance. Yet, to Bauby he is still their “father” still in love with them, still wanting to be close, to play and joke and talk with them. However, the internal things that are Bauby as father are no longer able to be communicated to the outside world. He can imagine himself being able to touch them and interact with them in his iconic fatherly mannerisms; however, he is no longer able to consciously enact those mannerisms, and thus he, even to himself, is no longer fully their father.

The Diving Bell and the Butterfly ends with the beginning, appropriate in its irreverence to time, or perhaps time’s irreverence to Bauby, and as the book closes Bauby’s eyes do too, plummeting into the oblivion of a comatose slumber. Both the reader and the author know that when he opens them once more it will only be to a world, literally and figuratively, as much of a dream as the state from which he awoke. Yet, the end does not detract from the body of the work which paints a poignant, touching portrait of humanity and what it means to be human in both body and mind, both imaginatively and neurologically. Nor does it diminish the reality established in the book, or more accurately Bauby’s story of “reality”. Bauby’s story serves to prompt us to question our own experience of reality and what it means to “be” in both body and mind. This story questions what it means to “be” alive in a social group of organisms where physical action and communication is as important if not more so than emotional/mental processes. And the answer it derives is dark, ominous, and all too pertinent to our modern society of nursing homes, hostels, and other facilities where the physically unable are segregated from society. Yet, for every precious moment of insight gained in this tale, the reader is left with more questions: Are all cases of “locked-in syndrome” similar to this one, or is Bauby’s particular in cognitive power and lucidity because he is not a typical case? If Bauby was truly capable of reproducing olfactory cues and sensations of taste was he also able to reproduce tactile sensations? How “real” were these sensations to the context of his “I-function”? However, the biggest question of all is by far the question that every reader asks themselves, “What if that were me? What would I do, what would become of Me?” Luckily, perhaps even ironically, for the reader that power of imagination, that alternative story of the “I-function” can stay just that an alternative, an experiment, a dream.



Bauby, Jean-Dominique. The Diving Bell and the Butterfly: A Memoir of Life in

Death. Translated by Jeremy Leggatt (New York, 1997) .pp.1-132.


Anonymous's picture

I loved "The Diving Bell and

I loved "The Diving Bell and the Butterfly", but the movie I'd rather see is "My Stroke of Insight", which is the amazing bestselling book by Dr Jill Bolte Taylor. It is an incredible story and there's a happy ending. She was a 37 year old Harvard brain scientist who had a stroke in the left half of her brain. The story is about how she fully recovered, what she learned and experienced, and it teaches a lot about how to live a better life. Her TEDTalk at TED dot com is fantastic too. It's been spread online millions of times and you'll see why!