The Diving-Bell & The Butterfly by Jean-Dominique Bauby is the true story of a man paralyzed into “locked-in-syndrome” after having suffered a massive stroke. I wanted to say that it is an autobiography but more accurately, it is a telling of what happened to him that unlucky December 8, 1995, in the outskirts of Paris and life after the tragic event. There is the occasional anecdote dispersed throughout the book as well. This is one of those books that I simply cannot make up my mind about. I think I loved it. But the storyline and his circumstances were so cruel that I kind of hated it as well. I love how the author expressed himself. He must have been a frustrated poet. The entire book is written in a melodic tone and expression that quietly seeps into your soul…
“Through the frayed curtain at my window, a wan glow announces the break of the day. My heels hurt, my head weighs a ton, and something like a giant invisible diving bell holds my whole body prisoner…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 cocoon becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or time, set out for Tierra del Fuego or for King Mida’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.”
Prior to suffering the stroke, Jean-Dominique lived a very vibrant and exciting life. He was the editor-in-chief of French Elle magazine. He was a father of two beautiful and healthy children. At the time of the unfortunate event, he was only forty-three years old. He had recently separated from the mother of his children and had a new love in his life. He felt he had it all. He had the world at his fingertips. And then the unexpected happened and his entire life was completely and irrevocably altered for all eternity. After being in a coma for twenty days, he woke up to find out that he was suffering from “locked-in-syndrome” and only able to communicate with his left eyelid.
In The Diving-Bell & The Butterfly, he primarily talks about his “bedridden travel” and the book is a compilation of his bedridden travel notes. He talks about striking up an imaginary friendship with the portrait of the hospital’s founder, the struggle of crossing the hospital’s parking lot to get to the ocean close by, a heart-wrenching visit from his children on Father’s Day, only being able to hear his father over the phone who is essentially trapped in his own apartment due to old age and there being no elevator…He allows the reader to understand the extent of his lucidity and the constant entrapment in which he subsides.
The book is bitter-sweet. It is so beautifully written but also so painfully elucidating. One wants more than anything in the world, to be able to help the author but alas, nothing can be done. This is where my frustration crept in while reading page after page. I was fascinated to read how mentally agile and spirited he remained until the very end. I enjoyed it (I think. I really cannot make up my mind.). No, wait. I’m sure of it. I love how honest he was…how vulnerable; especially during the chapter on bathing and his visit to Lourdes. What I didn’t like, and understandably never will, was the subject matter. What a horrendous way to subsist.
I commend him for dedicating very little time to reminiscing. Instead, he created fun yet unrealistic scenarios in his mind to keep from going bonkers. However, he probably didn’t want to reminisce too much as dictating a book one letter at a time with one functional eyelid is a daunting monumental task. He had a brilliant mind that refused to be silenced by his circumstance. He continued to work hard and dedicate his days to communicating his situation to others through personal letters and this book so as to remind the world not to forget those suffering from locked-in syndrome.
I gave this book four (4) on Goodreads only because I was a little disheartened by the distasteful comment he made while visting Lourdes, France. Let me know whether you’ve read it or get a chance to read it.