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The Diving Bell and the Butterfly: ‘Living’ life via the mind

dvergara's picture

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Before I begin my commentary on Jean Dominique Bauby’s The Diving Bell and the Butterfly, I want to clarify that my initial reason for choosing this book was simply because I enjoyed its film adaptation, and I was intrigued as to the style of the original medium. However, as I delved deeper into the writing and thus, the mind of “Jean-Do” (as he was called by his friends) I found an infinite number of connections to our Neurobiology course. Jean-Do’s memoir of his experience as a “locked-in syndrome”* patient revealed many intricacies of our nervous system as well as challenged our, or at least my, idea of what ‘living’ and experiencing truly is.  Despite his condition, Jean-Do was later able to appreciate the “inseparable link between the brain and the spinal cord,” and soon enough said, “My diving bell becomes less oppressive, and my mind takes flight like a butterfly,” (4-5).


            Crucial to understanding The Diving Bell and the Butterfly is an understanding of the condition experienced by Jean-Dominique Bauby, ‘Locked-In’ Syndrome, and learning a bit about his life prior to his condition. During the writing of this book, Bauby had ‘locked-in’ syndrome, a condition with symptoms similar to that of quadriplegics. Bauby had no control over his chest or limbs like quadriplegics but in addition, he could neither speak aloud nor did he have much control over his head or neck (he could only move one eyelid and through rehabilitation was later able to have slight control over the movement of his tongue and swivel his head). In order to write this book, he had to communicate by blinking (the only physical movement he could control); a transcriber would read off the alphabet, in a special order that placed letters in order of the frequency of their use in language. Thus was written this book, a 130 page conversation with someone who couldn’t actually talk. In Butterfly, Bauby expresses his anxiety over the one-sided dialogue performed by his visitors and the effort it took to transcribe just one simple sentence [by him]; interestingly enough, Bauby uses a conversational tone in his book, making one wonder whether he constantly had conversations like these in his mind or whether he relished in the opportunity to lead a conversation for once.

Prior to his debilitating condition, Jean-Dominique Bauby was the editor-in-chief of French magazine, Elle. On the night of Friday December 8th, 1995, Bauby suffered a massive stroke that left him paralyzed and thus forth, “the patient, his mind intact, is imprisoned inside his own body, unable to speak or move,” (4). To a passer-by, Bauby could have seemed dead or a ‘vegetable’, Bauby however, was very much alive, albeit in his mind. Bauby was still himself but could not control his body; that is, there was a disconnect between [what we know as] the I-function and the caudal end of his nervous system (below his brain and brain stem, mainly his spinal cord and peripheral nerves). This brings up not only the question of what does it mean to be “alive”, but also of what exactly constitutes ‘living’? In reading Butterfly, it’s clear that Bauby was living life as much as anyone else, irrelevant of whether or not he could walk out the door.

Though it is obvious Bauby had no control over his body, and like Christopher Reeve, could not move his leg if you asked him to, he does talk about his body moving. He also mentions at times, physical discomfort. If he was paralyzed neck down, how then could his body move? Or how could he ever feel discomfort? Bauby’s paralysis did not equal a total disintegration of the nervous system, and to begin with, paralysis is not a suitable term to describe what was really going on. In reality, there was a disconnect between Bauby’s “I-function” and the rest of his nervous system, that part of the nervous system capable of controlling body movements. Neither function was destroyed, only the component of the nervous system that allowed them to communicate (some motor functions could have been destroyed during his stroke, but this type of information has not been released on Bauby’s case).

Bauby never articulates this exactly but his descriptions of daily life reveal this phenomenon. Upon waking, Bauby remarks “I instinctively stretch, my arms and legs moving only a fraction of an inch” (5); Bauby did not actually do this, but it seems that his nervous system, after being ‘told’ to do this every morning, eventually made it an automatic response to waking, and did so despite any stimulus. And perhaps, after a long enough time without a stimulus, his nervous system would stop stretching automatically every morning. Bauby also relates “uncontrollable spasms” (8); although to him imaginably annoying, they should not have been random, and were simply motor reflexes triggered by some physical stimulus, such as his foot bumping into something and therefore kicking out.

Even more curious, and somewhat contradictory, are the times when Bauby seems to have ‘felt’ something in his body. Throughout the book, he talks of his inability to tell the temperature or feel human touch. But then will say things such as “a gurney as comfortable as nails” (17) and after a day on the beach in his wheelchair, “bottom hurts from sitting on it too long,” (75). These statements are confusing in that they challenge the idea that he could not feel anything, an idea that he made clear in the first place; because of their contradictory nature, these thoughts blur the already vague idea a reader will acquire of Locked-In Syndrome.

Because Bauby could not live as most people do, that is, through physical contact with other people and with the environment (his body could touch things but he could not experience physical contact), Bauby’s life was limited to the confines (or freedom) of his mind. In order to experience life, Bauby had to become more in touch with his already existing “vivid memory of tastes and smells, an inexhaustible reservoir of sensations” (36) as he was limited to “this bed, that wheelchair, and those corridors” (129) to be able to make new memories (and physically limited in his ability to taste, touch, or see). Not just limited to memory, Bauby was also able to ‘live’ through his dreams, and create new memories this way as well.

Ironically (or some would argue, logically) one oftentimes does not know if Bauby is referring to a dream or to reality, especially since he lives and experiences life more fully through his dreams. “I wander about, utterly lost…I am petrified, mummified, vitrified. If just one door stands between me and freedom, I am incapable of opening it...For I am also the hostage of a mysterious cult” (52), although Bauby says he is recounting a dramatic dream of his at the time, his dream seems to be a fair account of his actual life, thus further blurring the line between life as lived through the dreams and the mind and physical reality. This event along with Bauby’s constant tales of travels and dialogues with friends (that many times did not actually occur) challenge one’s idea of the ability to live. As Bauby says, “My diving bell becomes less oppressive, and my mind takes flight like a butterfly” (5), thus making it seem as if really, the body is normally the body’s diving bell, and only in situations like Locked-In Syndrome is the mind then able to free itself; differing completely from most people’s opinion, that Locked-In Syndrome and similar conditions are the diving bells (weights) of life.


*NOTE: There is no cure for Locked-In Syndrome, thus once Bauby had the condition he never recovered. Jean-Dominique Bauby’s only release from his diving bell, as a friend said, happened upon his death in the spring of 1997.


Bauby, Jean-Dominique. The Diving Bell and the Butterfly. 1st ed. New York, NY: Vintage Books, Random House, Inc., 1998. Print.



Kward's picture

34 day coma

I experienced the locked in syndrome for 34 days. Upon waking and recovering I referred to the feeling not as a diving bell but as being inside a grandfather clock with the glass inches from my face. The dreams I had were very real and helped me stay sane. When the nurses or doctors would lower my drugs to test my breathing I could see them, hear them but not respond due to the tubes down my throat. One day I could feel myself suffocating as my oxygen level was too low. I could only get their attention by crying and biting on the tubes which caused them to scream at me to stop. Anyway you should look into the case that was recently on NPR. Guy was in a coma for twenty years and woke up. Only thing he lost was power of speech.