Monday, January 26, 2009

The Diving Bell and the Butterfly

I will say, with some shame, that the book The Diving Bell and the Butterfly has been near the top of my need-to-read list for some time, but I haven't ever gotten around to it. When I heard they were making it into a movie, I was very excited. Watching the movie is just as good as reading the book, right?

In case you're not familiar, The Diving Bell and the Butterfly (Le Scaphandre et le Papillion) is a book written by Jean-Dominique Bauby. Bauby suffered from a stroke and developed locked in syndrome. The only part of his body not paralyzed was his eye (one of his eyes had to be sewn shut). He communicated entirely by blinking. His caregivers developed a system in which they recited the alphabet (in order of most to least commonly occurring) and he blinked when they said the right letter. He wrote an entire book about his experience with just one eye.

The movie starts when Bauby first awakens and is trying to figure out where he is and what is happening. When he first finds out the extent of his injury, he wants to die. He is filled with regrets about his life. A recurrent theme in the movie is Bauby imagining he is trapped in a diving bell.

He then realizes that his eye isn't the only part of him that still functions. He still has his memory and his imagination. Through these he is able to escape from his prison, thus the name of the film.

This is an excellent story about someone managing to find meaning and purpose in a very bad situation. Beyond that, this isn't just a story about how it must feel to be trapped in ones own body. It is the actual account of what Bauby felt and what he experienced. Part of that is a complete loss of control. Just look at the TV. The annoying test pattern screen left on all night. The game he is watching turned off. (It made me think of some of the crazy things we leave on in dying patient's rooms. What if they hate old westerns or Law and Order? To my family and friends, please don't leave CNN on all day to cycle the same stories over and over, and any CSI should not come on in the room at all. Maybe TV preferences should be included on an advanced directive.) You don't often get first hand accounts of things like this.

Maybe I'm a bit biased but while watching this movie, I couldn't help thinking "Where's the palliative care team?" "Does he want to go back to the hospital?" "Why isn't anyone asking him?"

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