After weeks of dealing with a bad flare-up of my chronic illness, I was feeling in need of a little inspiration, so I picked up a memoir,
The Diving Bell and the Butterfly by Jean-Dominique Bauby. This small book packs in a lot of emotions – hope, joy, anger, frustration, and, yes, inspiration.
Bauby was the 43-year old editor-in-chief of the French
Elle magazine when his life was suddenly and dramatically changed forever. He suffered a massive stroke that resulted in a condition known as locked-in syndrome. After waking from a month-long coma, Bauby discovered that he could move only his neck and his left eye. He wrote this entire book by blinking his left eye to dictate his words, letter by letter.
That in itself would make this a remarkable book, but it’s what Bauby writes that is truly amazing. There is not a hint of self-pity in this book. Bauby writes in an open, pragmatic way about what it’s like to have a lively mind trapped inside his motionless body, to trade in his previous globe-trotting life for one limited to the grounds of his hospital, to daydream about the tastes of his favorite foods while being fed through a tube. He compares the feeling of paralysis with having a giant invisible
diving bell on top of his body and describes what it’s like to wake up in the morning:
An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter hour by quarter hour. After their night’s respite, my congested bronchial tubes once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can’t tell if they are burning hot or ice cold. To fight off stiffness, I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb.
My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas’s court.
You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.
I am completely in awe of Bauby’s positive attitude. I have spent much of the past month confined to the couch – still able to eat, go to the bathroom, hold a book, and type on my laptop – and I can tell you that his strength and courage are remarkable. He is a testament to the resiliency of the human spirit.
The memoir goes back and forth between the past – before his stroke – and his current life in the hospital. Although you might think it would be depressing, it’s not at all. In fact, Bauby shares his story with honesty, optimism, and even humor. The only thing I found truly sad is the fact that the title page explains that Bauby died two days after the book was published in France, an unfortunate loss for the world.
This was a moving book, and now I can’t wait to watch the
award-winning DVD as well.
132 pages, Vintage International, a division of Random House
