Hearing Jean-Dominique Bauby’s thoughts as expressed through his book The Diving Bell and the Butterfly and seeing the world from his perspective in its film adaptation simulated his experience as best it could. These are the only functions that remain under his jurisdiction: the cognitive mind for thought, the left eye for sight. Unable to move or speak, Bauby has locked-in syndrome: a mysterious cerebrovascular disease.
It was this condition that intrigued me to explore these works. Entire body paralysis, affecting all voluntary muscles of the body except for the eyes, is incomprehensible to me. Despite this bodily entrapment, Bauby’s alert mind finds a voice through the only part of his body that has retained movement: his left eye. At first, his decisions are made with this movement. Blink once for yes, twice for no. These absolute decisions become a choice between letters, and Bauby blinks to indicate the letter of his choosing. What began as a simple means of communication grows and establishes itself as a platform to create awareness of what it really means to be “locked-in.”
Bauby suffers a debilitating stroke that alters life as he knows it, establishing a new home for him in a hospital room in Berck. Bauby was a successful man, the editor of Elle magazine and a father of three. Locked-in syndrome forces him to retreat to a state of infantilism; he entirely depends on the care of others in order to exercise his muscles, to communicate his thoughts, to exist. He finds escape through his memory and his imagination, reflecting on moments such as shaving his father while fantasizing about extravagant meals. He also connects more than ever with his favorite work of literature, The Count of Monte Cristo, insisting that the main character had locked-in syndrome. Bauby’s outlook transforms through the course of the novel, as his mindset evolves from questions of “Is it worth it?” to an acceptance of his “new life in bed” (4; 129). Although Bauby passed away 10 days after the book’s publication, his life experience has continued to resonate through this memoir.
Although I thought that the film overall immersed the viewer into Bauby’s body, there were a few discrepancies that left me confused. It took me a while to realize what seemed off, but I was not fond of Bauby’s audibility. I think the film would have been more powerful if it had mirrored Bauby’s thoughts, allowing them to exist solely as words in a subtitle rather than as a voice to be heard. Amplifying his stream of consciousness through audible narration deviated from the accuracy of his experience, which I felt detracted from the film. I was also confused to see that although the film was in French with English subtitles, all the words that he spelled letter by letter were spelled out in English.
While these discrepancies hindered the film’s potency, I found studying these works in conjunction to one another to provide great insight into Bauby’s life. His book creates as space for him to tell his tale as best he can, but I do think that the film created a simulation of the “locked-in” experience. That being said, I think it’s important to note that the movie was made in 2007, 10 years after Bauby’s death. The experience simulated was adapted from his textual creation, but Bauby never had the chance to see the film, confirm its accuracy, or approve of its representation. I wonder, how would he have reacted to this window into his life?
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Discussion Questions:
- What are the strengths and weaknesses of narrating illness through film?
- What elements of Frank’s illness narrative categories can be identified in Bauby’s text?
- How does Bauby’s unique method of communication shape his narrative?
- Why the diving bell? Why the butterfly?
Investigating Illness Narratives 