The Diving Bell and the Butterfly

This is about a movie available on DVD, but it is not just a movie. It is based on a true story that touched me personally.

The Diving Bell and the Butterfly tells the story of a high-powered business man, vibrant and active in the fashion and publication field, who had a stroke and is rendered helpless and unable to communicate. The only part of his body he learns to control is a single eye - he can blink only one eye. Of course, the story is inspiring -- he doesn't give up -- but we have heard that story before. There are other parts of the movie that inspired me beyond the standard tear-jerker. I need to talk about those.

Jean-Dominique Bauby, known affectionately as Jean-Do, was the editor of Elle magazine when he had a stroke and awoke in a rehab hospital unable to move, unable to talk, totally dependent on his medical caregivers for his every need, yet unable to tell them what he needs. However, he is fully conscious and understands what is happening because the medical staff talks to him as if he can. He is able to learn to communicate, using his one blinkable eye.

His nurse Henriette devises a plan where she says one letter at a time until he blinks, indicating that is the letter he chooses until he spells the word he wants to say. It was clever of her to devise this plan. It was ambitious for her to undertake it. When she approaches Jean-Do with the idea, we see some anger and frustration. He doesn't want to do it, he is angry because there is no other way, and she balks at his refusal and walks out. She returns, they apologize, and they get started. I have to believe the actual anger/frustration was more than a single five-minute incident, but the important point is they got over it. They work together honing the communication method and become comfortable with it.

Before the stroke Jean-Do had a book contract, and decided to use his new skill to honor the contract and write about his experiences. Enter a new woman in his life, Claude, a scribe who would take dictation, one letter, one blink at a time. Imagine the patience it must have taken to write a word, then a sentence, a chapter and an entire book blink-by-blink. All of them showed incredible patience and strength -- the nurse, the blinking dictator, the scribe, and the family and friends who stayed by his side as he shared his thoughts. Many people would have made him comfortable and left it at that. Henriette, then Claude, stayed with him beyond the expected, painstakingly reciting letters, improving his quality of life with a purpose and hope. They are heroes.

The story is told through his eye with narrative by Jean-Do to lead the viewer. It is often interrupted by images of the Diving Bell, a rigid deep-sea diving suit that holds him captive, and images of butterflies free in a beautiful meadow. These images represented the prison of his paralysis and the freedom of his thoughts.

Before the stroke he had a family life as well as a love life outside the family. We travel through his memories, his thoughts of the pretty women around him. He flirted with them as he chose letters, he was not shy when looking at them, and then his imagination created a sensual dinner date with his scribe. His paralysis did not prevent his affair with Claude; it stole his mobility, but his memories and imagination let him keep his spirit.

There are also small snippets throughout the movie that illustrate Jean-Do's plight.

- It is night and an orderly is finished cleaning the room. As the orderly leaves, he turns off the TV and says "goodnight." Jean-Do was watching a football game that was on the TV and it was turned off amidst his silent urging to the player to kick the ball for a goal! The orderly left the room ready for the night unaware that he had  denied Jean-Do the game's final minutes.

- Jean-Do was becoming accustomed to his new living arrangement when the nurse took him outside. On the way to the veranda they passed mirrors and Jean-Do saw himself for the first time since the stroke. His face was barely recognizable, even to him, and he was intensely horrified by his own image.

- It took some time after the stroke before he would let his children visit. He did not want them horrified as he had been and he could not reassure them. When the time came, they met at the beach and he watched them play. They were not repelled by his unmoving, twisted face and slumped torso. He was still their daddy, and it was clear they loved him, even as his son wiped saliva from his chin.

It was a lovely movie and an inspiring lesson. Had Jean-Do seen the movie inspired by his book, I think he would have been proud. When I begin to feel frustrated by my limitations, my own paralysis, I have to remember him. As long as I have my mind, I still have butterflies.


For more about the movie, here are two reviews:
Roger Ebert
Rolling Stone