Sunday, July 20, 2014

The Diving Bell and the Butterfly: a book report for grown ups

I just finished a book titled, "The Diving Bell and the Butterfly" by a Jean-Dominique Bauby.  The book also became a "major motion picture", and was published in 1997, so many people may already know his story and I am just now catching up, but I wanted to share a little about the book and about Bauby, and why I think every able-bodied person would be doing themselves a favor to read is memoir.

Jean-Dominque Bauby was the editor-in-chief of French Elle magazine. When he was 43 years old he had a massive stroke which resulted in something called "locked-in syndrome".  Locked-in syndrome is just what it sounds like: Jean-Dominique was locked inside of his body and the only thing he could move was his left eyelid.  And with his left eyelid he wrote this short memoir.  A partner dictated for him as he spelled out each word, letter by letter, using partner assisted scanning, just like we do with Lucy's PODD book.  His speech therapist created an alphabet grid that he used to choose each letter of each word by blinking his eyelid.  Even if this was a book about how mushrooms grow on poop, I think everybody should still read it simply out of respect for Bauby and his perseverance.  But it is not about mushrooms growing on poop, it is about how his life as he knew it ended and his experiences being confined to a hospital and trapped in his own body.

I was first interested in reading it mostly because of the amazing way in which it was written, but Locked-in Syndrome very obviously has many similarities to what children with Rett Syndrome experience every day.  The main difference being that while Bauby's body did not move, Lucy's never stops, but neither of them have/had any control over them. And both children with Rett and Bauby were and are completely cognitively aware of the prisons that their bodies are for them.  

This book is sad, and funny, and heart-breaking, all within 132 short pages. Bauby viewed his condition with alternating grief and sarcasm, and even with optimism at times.  But he seemed to have a strength that wouldn't allow him to just wallow in his own despair.  One of my favorite lines from the book was in regard to Bauby refusing to wear the generic hospital sweat suits and insisting instead on wearing his own clothes when he ventured out of his room.  His reasoning was: "If I must drool, I may as well drool on cashmere." 

Jean-Dominique Bauby died two days after the French publication if his book.

Here is a photo I just grabbed from Google before the stroke:

And here is after, it looks like he is dictating to his assistant:

Imagine that we didn't have all of the abilities that we do.  Imagine that at the end of a day that started perfectly ordinary, ends with us in a coma.  Instead of always wishing for better "luck", or more of this or less of that, perhaps it might do us all a bit of good to just stop occasionally, and be glad that we have what we have.  Maybe just feel grateful that we can put one foot in front of another, and speak one word after another until we are tired of walking and talking.  I'm sure Jean-Dominique Bauby never thought to himself, prior to his stroke, "Man, I'm glad I am not completely paralyzed." And certainly I realize that if Lucy didn't have the challenges that she does, I would probably take her perfect health for granted.  But I guess my point is just...don't. Don't take what you have for granted. Try to remind yourself every now and then just how lucky you are...and totally read this book. You will be glad you did. 

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