Tuesday, May 24, 2011

The Diving Bell and the Butterfly

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One of the forty-seven movies I've watched during my stint with mono is the foreign film The Diving Bell and the Butterfly. It is based on the true story of Jean-Dominique Bauby who was a famous french journalist and editor of ELLE magazine, and who suffered a serious stroke at the age of 43 that left him completely paralyzed from head to toe. Shortly thereafter Bauby was diagnosed with "locked-in syndrome," meaning that while his brain was completely functional, he was unable to move or speak. Ultimately Bauby was left with one functioning eye, and moderate hearing abilities as his only remaining tools with which to experience the world.

The film The Diving Bell and the Butterfly is based on the memoir that Bauby wrote with the help of a transcriptionist. Let me clarify: Bauby woke up at five in the morning each day, memorized what he wanted to "write," and then spent several hours "dictating" his thoughts to a transcriptionist by blinking the correct letter of the alphabet as it was slowly recited to him, over and over again.

The entire concept that a paralyzed person could "blink" his way through writing a memoir is miraculous. And his story, his version of the world from the vantage point of a hospital bed is transforming. Bauby writes of both the beauty and sorrow of his new world, of past regrets that would never be made whole, and of his love for his children. With his one good eye he watched them run and play, he felt their kisses on his cheeks, but never again would he hold them or reach for them, or run his hands through their hair. The movie portrays this staggering loss in a way that made me want to pull my own girls out of bed and cradle their warm, sleepy little bodies in my arms.

One of the central themes of the movie is watching Bauby mourn the loss of his former life. He lived glamorously, and hedonistically. His life was full of luxury, rich food, lovely things, and admiring crowds. But of course all of it drained away after his stroke and he was left with the useless carcass of his body, his soul trapped inside. Bauby's story is a poignant reminder of what we take with us, and how our departure from this world and its comforts strips us bare and leads us to the most fudamental, raw awareness of our self.


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 One of the most inspiring lines from the movie was when Bauby said, I decided to stop pitying myself.Other than my eye, two things aren't paralyzed, my imagination and my memory.

It is sometimes tempting to sink down in life, like a helpless, weighted diving bell. Or we can live freely, our thoughts roaming to happier, more positive places, like a butterfly searching out flowers. The concept of the diving bell and the butterfly may have been more literal for the paralyzed Bauby, but I finished the movie believing his message is useful for all of us. Don't we all feel like dead weights beneath our limitations? Don't we all face realities that present invisible walls?

As I watched Bauby embrace the cleansing power of imagination and memory, it got me thinking how important these elements are in my own life. How the hard times are tempered by memories of good times past, and dreams of better times still to come. Sometimes I lie in bed at night and imagine things the way I wish they were. I imagine my house to be completely clean and orderly, free of Polly Pockets strewn across the carpet. I forget about the tantrums that happened all day long, and imagine a day when there are no crying girls, when we will laugh and play with lighter hearts. I imagine my house is decorated the way I wish it could be decorated. And always in my mind's eye I imagine I've succeeded in my writing, driving my girls to the local bookstore to show them my row of published books.

Remembering the good times past and day dreaming your way to a better life won't change things. It certainly didn't heal Bauby or give him his old life back. But it did enable him to better survive his condition. Bauby wasn't searching for a solution so much as a salve that could return hope and comfort to his life. For days after I watched the movie my thoughts periodically drifted back to Bauby's unique form of heroism. How precious this message feels, and how brave its messenger. Jean Dominique Bauby died two days after the french publication of his book. His final life experience very well might have been as both diving bell and butterfly, but in our own way, so it is with the rest of us.



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