The diving bell and the butterfly

Locked In, Yearning To Be Free

by John Touhey

In 1995, Jean-Dominique Bauby, French editor of ELLE magazine, had a massive stroke that paralyzed his body from head to toe, leaving him unable to speak or move anything but one eyelid. His mind was unaffected, however. “Locked-in syndrome” left Bauby feeling as if his body were trapped inside a diving bell and he was being forced to view reality from a tiny porthole. But he eventually realized that his mind was like a butterfly, free to wander anywhere his memory or imagination cared to take him.
In time, Bauby learned to “speak” by listening to a speech therapist run through the alphabet, blinking when the appropriate letter was reached.
This arduous but effective method of communication allowed Bauby to converse with visitors and eventually to author a book about his experience.
Though a feature-length film about an immobilized human being may not sound dramatically promising, The Diving Bell and the Butterfly grips the viewer from the first frame to the last.
This is in no small part thanks to the collaboration of director Julian Schnabel and cinematographer Janusz Kaminski (Schindler’s List, Munich), who draw the viewer first into Bauby’s sense of panic and frustration, then into his slow re-embracing of existence. Much of the action is experienced from Bauby’s limited point of view, with occasional forays into the bittersweet memories of his glamorous past or into his wild, poetic reveries.
 We experience Bauby’s terror when his bad eye is sewn shut, his utter helplessness when nurses come in to bath him or clean out his feeding tube, the aching of his heart when he watches his children play on the beach. Credit must also go to actor Mathieu Amalric for his incisive, surprisingly witty portrayal of Bauby.
Beyond the undeniable artistry of the production, what makes The Diving Bell and the Butterfly compelling is its unsentimental, fierce humanity.
 This is a genuinely “pro-life” film, yet without the least sense of preachiness or moralism. Jean-Dominique Bauby’s stroke does not turn him into a saint. The man’s faults remain–but so does the infinite value of his person. This is made clear to Bauby in his day-to-day encounters. Take, for instance, the moment when he blinks out, “I want to die” to his speech therapist, Sandrine. “How dare you!” she shoots back angrily. “That’s a terrible thing to say! I’m not putting up with that! You think of something else. You do not want to die… There are people who love you and care for you. And you’re alive. So, don’t say you want to die. It’s offensive. It’s–it’s obscene.” It proves to be exactly the slap from reality that is needed to prevent Bauby from drowning in self-pity and despair.
Then there is the visit from an old friend, Roussen. Bauby once offered Roussen his seat on a flight to Hong Kong. The plane was hijacked and Roussen spent over four years as a hostage in Beirut. Roussen sees that Bauby is also a hostage of sorts and has come to share his own experience of endurance. “Cling to your own humanity and you will survive… Tell yourself everyday the human spirit is indomitable. Christ knows why. It has no reason to be. But it is. Indomitable.”
There are many such encounters that provoke Bauby to keep going, just as he is a provocation to those who share his life. But don’t expect a traditional Hollywood ending where the human spirit triumphs over all or where a last-minute miracle solves all problems. Bauby’s spirit endures, but does not have the power to wipe out death. He experiences miracles, but the great question of the ultimate meaning of things remains.
As the final credits roll, one leaves The Diving Bell and the Butterfly understanding, as Bauby did, that despair and sadness are truly two entirely different things. One position succumbs to circumstances and concludes that life is just a cruel joke; the other position remains open to saying yes to existence to the last breath, even when life is terribly problematic.