I first discovered The Diving Bell andthe Butterfly when mentioned during the first weeks of classes. Professor Grobstein spoke of the novel(which is now a movie as well) with a description of the situation andtechnique it was written under. This description immediately caught my attention, for the author,Jean-Dominque Bauby, wrote the novel using only his left eye. Indeed, his left eye is the only bodypart Bauby can move and control. After suffering a stroke when he was forty-three years old, Bauby nowlives with “locked in syndrome.” As a result of his limited physical capabilities, a helper came in andrecited the letters of the alphabet, recording a letter when Bauby blinked hiseye. In this way, Bauby completedover a hundred pages of pure prose. Knowing this, I decided to learn more about the author and his disease.
“Locked in” syndrome is a condition in which a patient is aware and awake, but cannot moveor communicate due to complete paralysis of nearly all voluntary muscles in thebody (1). It occurs as a result ofa brain stem injury, in which the ventral part of the pons, a structure on thebrain stem that relays sensory information between the cerebellum andcerebrum. States Bauby, “Ihad never even heard of the brain stem. I’ve since learned that is an essential component of our internalcomputer, the inseparable link between the brain and the spinal cord. I was brutally introduced to this vitalpiece of anatomy when a cerebrovascular accident took my brain stem out ofaction” (2). Bauby suffereda massive stroke. He sarcasticallynotes that in the past, one used to simply die. Now, however, improved resuscitation techniques have“prolonged and refined the agony” (2). To truly understand Bauby’s condition, it was once deemed as theclosest thing to be buried alive, or, in the literal translation from French,being walled in alive (1).
Though commonly referred to as locked insyndrome, it is technically called many different names such asCerebromedullospinal Disconnection, De-Efferented State, Pseudocoma, andventral pontine syndrome. Thephysical results of the disease are quadriplegia and an inability to move orspeak. Bauby adds, “Paralyzed from head to toe, the patient, his mind intact,is imprisoned inside his own body, unable to speak of move. In my case, blinking my left eyelid ismy only means of communication” (2). Indeed, the individual is fully conscious and aware, but cannot physicallyact on impulses, desires, and thoughts.
Bauby outlines the many other effects of thedisease that scientific reports often fail to mention and that “normal”individuals take for granted. Hespends a lot of time discussing breathing and eating, two things people musthave for basic survival. He writes, “In the long term, I can hope to eat more normally: thatis, without the help of a gastric tube. Eventually, perhaps I will be able to breathe naturally, without arespirator, and muster enough breath to make my vocal cords vibrate” (2). For Bauby, eating is not anoption; he eats from a tube that is put down his throat. Likewise, Bauby breathes from a machineand not of his own accord. Formost human beings, one does not make a conscious decision to breathe in andout; in other words, it is not an action that occurs within the I-function ofone’s brain. Instead, the nervoussystem is doing the job without an individual taking conscious note of it. Bauby’s brain, however, because of hisdisease, is incapable of even this. His nervous system will not allow him to breathe, unless he is attachedto an outside device that does the job for him.
As a result of his extremely limited physicalpossibilities, Bauby spends most of his time in a dream world, wandering off inspace, setting out for King Midas’s court, building castles in Spain, anddiscovering Atlantis. Events suchas turning the television on and off obtain monumental significance. Likewise, a trip in his wheelchair,visits from family and friends, and phone calls, to which he can not respond,make or break his day. Theseaspects of the book shows that a man without a fully functioning nervous systemcan still contribute to the world. At the same time, however, they also outline the horrors ofconsciousness without action. Though Bauby’s brain is fully functional, it cannot interact with therest of his nervous system and this causes intense suffering, for him, but alsothe reader.
Thus, The Diving Bell and the Butterfly tellsa moving story of one man’s perspective while experiencing locked insyndrome. Throughout Bauby’sstory, he offers to world his internal struggles and daily tortures and joys. Within this, he comes to accept thecompletely changed life he now leads, though not without feelings of anger andremorse for his past and for his “lost” future. Indeed, some may question whether “life” is an appropriateword to describe Bauby’s time on earth, after contracting his disease. Certainly, Bauby does not conform tothe story of “life” that a majority of society accepts. However, his wordsreveal a new way of thinking about living. Bauby’s words illustrates that alternate stories exist aboutlife and these stories are just as, if not more than, valuable than the storiessociety “accepts.”
1- Wikipedia entry- Locked In Syndrome: http://en.wikipedia.org/wiki/Locked-In_syndrome#Notable_case
2- The Diving Bell and the Butterfly by Jean-Dominque Bauby