The Diving Bell and the Butterfly

Is it ever acceptable to say “I want to die?" How much loss to our physical capabilities could we absorb before the loss also absorbs our humanity? Can there be hope and purpose without a functioning body? These are questions haunting every frame of the current French film The Diving Bell and the Butterfly.
The movie is based on the memoir of Jean-Dominique Bauby (Jean-Do), a forty-something, successful and debonair editor of the French magazine Elle. He suffers a massive stroke, which triggers a rare condition called Locked-in Syndrome, where the victim is totally lucid but otherwise nearly quadriplegic and cannot speak. Much of the film is shot from Jean-Do’s point-of-view. Opening scenes show what he sees when first waking up in the hospital and he realizes the nature and extent of his condition. He is paralyzed in all but eye movement and blinking. Then the doctors determine that his right eye cannot lubricate itself adequately and decide to sew the eyelid shut. You watch this process as if the camera was his right eye. He calls out protests – soundlessly and helplessly – as the stitching slowly closes off vision until the screen goes black. The doctor performing the procedure is casually telling Jean, "Do not to worry," while also commenting to himself about the quality of his handiwork.
Now only the left eye remains open. His case is assigned to a young, attractive speech therapist. Acting on sexual desire is impossible for him, of course, but physical catastrophe does not also paralyze the libido. This is the very definition of emasculation. And we see new examples in situation after situation. He cannot brush a fly off his nose. A technician blocks his view of a televised football match. And when everyone leaves his room and the door closes, there is no more environment stimulation – only still-life silence.
His therapist however, devises an ingenious method for him to communicate. She arranges the letters of the alphabet in order of frequency found in French words and speaks them in that order to him. He chooses his desired letter by blinking. Then she repeats this for the next letter. Etc. Until finally a word is spelled or she guesses it correctly. This is excruciatingly slow, but is also his only real way to reach the world. When they first successfully try this system, the sentence he spells out to her is “I want to die”. She chokes-up over this and has to leave the room. She has hope for him, and wants him to have hope also. But she doesn’t have to face his life each day.
Still, this communication thread is his lifeline, both to the world and maybe his own sanity. Before the stroke he had a book contract and decides to use the still-available option to write a memoir of his present experience, using this blinking dictation. The result is the book from which the movie takes its title. We are shown his metaphor for this new life – a helmeted deep-sea diver suspended in a featureless ocean with only a long air hose connecting him to the surface. This is the ‘Diving Bell’. The ‘Butterfly’ in the title is his metaphor for transcending the chrysalis of a shattered body. But the film is not some simplistic tale of indomitable courage triumphing over all odds. It is far more complex, ambiguous and consequently realistic.
One of the potential values (and risks) of watching a movie is that it allows us to vicariously substitute ourselves into the situations portrayed. And, if the film is substantive and thoughtful, we can ask important ‘what if’ questions, and ponder universal issues. Now, we are unlikely to experience anything as severe as Jean-Do’s tragedy, but everyone knows that we each face physical and mental deterioration. The young might understandably forget this at times, but those of us whose bodies have long been out-of-warranty cannot. In addition, we likely have loved ones who have traveled this journey farther, and we see in them the aging process unto death gaining ground.
My father spent nearly 40 years losing a race with Multiple Sclerosis. The last 10 years he was bed-ridden. The final six months he needed assistance to breathe. He did not want to die, but did not want to live like that, either. And it was evident to me, over the years of interaction and watching him decline, that this disease – and his stoic but failing attempts to cope – were also progressively destructive to his psyche. Such collateral damage is all but inevitable.
Christian hope for an eternity where this damage may be recovered is truly a concept worthy of the adjective blessed. But until that day we must live in a world of moral and natural evil that continually produces perversely creative ways to rob us of our humanity. The Diving Bell and the Butterfly doesn’t overtly moralize or play games with our emotions. It just tells the tragic story of one man. We watch. We think. And the film has served us well.
Rich Hannon is a software engineer who lives in Salt Lake City. His reading interests focus on philosophy and medieval history.