The Diving Bell and the Butterfly is a translation of the French memoir Le Scaphandre et le Papillon by Jean-Dominique Bauby. At the age of 43, Bauby, charismatic Editor-in-Chief of French Elle suffered a cerebovascular stroke. After lapsing into a coma, he awoke 20 days later to find himself the victim of “locked-in” syndrome – mentally alert but a prisoner inside his own body, his only means of communicating with the outside world the blinking of his left eye.
Forced to adjust to this unique perspective, Bauby created a new rich world for looking into himself to find the only two things that weren’t paralyzed, his imagination and his memory.
With the help of a speech therapist, he developed a system of communication by blinking at the letters of a French frequency-ordered alphabet (E S A R I N T U L . . . .) as they were recited. This alphabet unlocked the prison of Jean- Dominique’s body which he called his Diving Bell and allows the reader to travel with him the borderless regions of freedom that he called The Butterfly.
Letter by letter, painstakingly words, sentences and paragraphs tell the story of a profound adventure into the human psyche and into the borderland between life and death. Over the course of a year, alongside a young editor, Claude, Bauby painstakingly constructed an account of his experiences that was part memoir, part confessional and part diary. The book was published in March, 1997. It received excellent reviews and sold 150,000 copies in the first week. Ten days after the book was published, Bauby died of pneumonia.
I saw the film adaptation of this book by the American artist and director Julian Schnabel. Schnabel insisted on authenticity and made it in France and in French. You can feel the French cinematographic influence strongly.
Although I’ve not yet read the book, the film does a superb job of capturing the point of view of a man locked in his body and struggling to find meaning in life – what makes human existence not merely endurable but worthy of celebration, and what is the irreducible minimum of such things that can keep us alive and how to communicate with the people in our world.
Schnabel’s interpretation avoids both pity and melodrama. Bauby was no angel before the accident and his disability doesn’t make him a saint. For all of Bauby’s impotent regrets and guilt over past misdeeds he refuses to apologize for the person he was, or the one he’s become. Realizing how his life had been less than exemplary, his stroke becomes an opportunity for redemption and allows him, if not to cleanse his soul, to discover that humanity lies in his consciousness not in material things or sexuality.
The seamless blend of cinematography and music give the film a surreal feeling – as though in a dream we witness a collage of memories, imaginings and actual dreams. The point of view switches between being inside of Jean-Do’s paralyzed body to seeing him in his life before the stroke and afterwards in the hospital. You see the world as Bauby views it while desiring to be free of the paralyzing feeling of a sinking diving bell. At other times, with his imagination, you find yourself fluttering as free as a butterfly. Mathieu Amalric is brilliant as Bauby, and he is supported by a large number of excellent performances, including Max von Sydow who gives a riveting performance as Jean-Do’s elderly heart-broken father.
In Schnabel’s words: “I wanted this film to help you handle your own death . . it is the story of all of us, who surely do face death and sickness. But if we look we can find meaning and beauty here.” Jean- Dominique’s experience is what eventually we’ll all come to in the end – spectators in our personal galleries of memories, the dreams, crossroads, transgressions, regrets, joys, disappointments of a lifetime. But these are the issues and questions that we all need to examine and ask ourselves on a regular basis – What makes my life worthwhile? Who is in my world? How can I communicate with them? Does anything need changing or updating or re-affirming? Though not paralyzed from head to toe like Bauby, many of us are in the “locked-in” syndrome – locked into our resentments and our fears, a rigidity that sours us on life and can keep us estranged from family and friends.
For me also, the film is also about what it means to be an artist. Sickness is a bit like artistic sensitivity in that it can be a source of misunderstanding and exclusion, and the artist, like the patient, is in constant battle against the outside world. To escape one’s fate, society’s cruelty and restraints, one can only rely on one’s own intelligence, creativity, and heroism. By reaching deep within himself, Bauby extends his life beyond the limitations of his body by dreaming and creating a work of art.
I found it a very captivating film on many different levels.