The Diving Bell and the Butterfly
was written by Jean-Dominque Bauby (1997)
I first heard about this book through word of mouth on Multiple Sclerosis blogs. Why would someone who has MS read this particular book? While this is not a book about MS, it is a book about extreme disability. It does capture the indomitable spirit of someone who is basically trapped by their body. It is the memoir of a man who is completely paralyzed except for the use of one of his eyes to blink. It is through this blinking that this book exists at all.
I suppose I am one who always insists upon lying on a psychological bed of nails. I knew that reading this book would be emotionally cathartic for me. I have a disease which impairs my movement. I wanted to read about how this man survived not being able to move at all.
Here is a short synopsis of his story. Jean Bauby had been a successful editor for the French version of Elle magazine. He lived an exciting carefree life complete with money, fancy cars, and beautiful women. In 1995, at the age of 43, he suffers a massive stroke which does not kill him but, instead, leaves him totally paralyzed. His condition is rare and is called, "Locked in Syndrome" because he is basically locked inside his body. His mind is still intact, however, and he must learn to live within his motionless body. A speech therapist comes to his aid with a method for him to communicate using eye blinks. It is through this method that he is able to slowly and painstakingly create this memoir of his experience.
This book is also now a motion picture which I also had the chance to see. Of course I will tell you that reading his words through his memoir was much more moving for me.
I read this book this past summer in one sitting while I was at the beach with my family. By the end of it I am weeping. I feel that somehow I had lost a friend. In a note in front of the book they tell you that Jean-Dominique Bauby dies just two days after the French publication of his book. I am glad he got to see it published.
Of course while reading this I thought about how I would feel if I were in this situation and I don't think anyone really can. We can only imagine through his words and even then, none of us can truly feel what he had to go through. As I read I remember looking out to the sea and wondering what it would be like to not be able to run towards it or jump in the cooling frothy water. I sat cross legged with the book on my lap in remorseful repose. I began to think about the future and how none of us knows what is coming next. One day you are fine and healthy and the next...well...anything can happen.
The parts of his book which made me the most sad were the times he spent with his children after his stroke. The very hardest thing for me to cope with having Multiple Sclerosis is the thought that I might not always be able to care for my children in the ways that I want to. One of the most poignant passages in Bauby's memoir depicts a scene with his little boy Theophile:
"Grief surges over me. His face not two feet from mine, my son Theophile sits patiently waiting--and I, his father, have lost the simple right to ruffle up his bristly hair, clasp his downy neck, hug his small lithe, warm body right against me. There are no words to express it."
I don't know how any parent could not react to that image. When I read it, I watched my sons playing in the water, their angular boy bodies catching the spray of the incoming waves. I wanted to keep that moment for all time...freeze it so nothing could take it away.
Bauby talks in his book about the letters he would receive from people. He said that some were so serious and full of discussions of the meaning and mystery of life. But the ones that meant the most for him were just talk about the meanderings of an ordinary day...portraying moments he could never take for granted again.
He writes about his gratitude for such sharing: "Other letters simply relate the small events that punctuate the passage of time: roses picked at dusk, the laziness of a rainy Sunday, a child crying himself to sleep. Capturing the moment, these small slices of life, these small gusts of happiness, move me more deeply than all the rest."
This made me think about the responses I have gotten when I tell people I have Multiple Sclerosis. I have gotten sympathy letters as well as philosophical and religious ideology. But what I most crave from others is just ordinary connection. I don't want to talk about my MS all day long. I don't want pity or clichés. I want normal. I want everyday normal conversation. And sometimes that is hard to find.
Bauby also speaks of his visitors. Some are reluctant to even enter the room. They don't know what to do, say, or feel. He very eloquently tells the reader about some of his visitors:
"Some visitors probably stand for a moment outside my room so that they can greet me with firmer voices and drier eyes. When they finally come in, they are gasping for air like divers whose oxygen has failed them. I even know of some who turned tail and fled back to Paris, their resolve abandoning them on my very threshold."
Here I cannot imagine what it would be like for either party. Would I be a coward as well if this were my loved one? How does one handle seeing someone who is so fundamentally changed in appearance and functioning? What words could one say to provide comfort? And what of someone who is in this condition? What must it be like to see people who are relatively unchanged while you are trapped within your body, unable to move?
I don't have any answers to these questions. All I can do is to think of the "what ifs" which never can replace experience.
I did have an experience recently where I saw a childhood friend. I told her of my MS and talked about it factually but it didn't really hit home, I don't think, until she saw me lose my gait. We were walking from the coffee shop where we had been talking for hours to her car. During that time my right foot began to drag behind me and I lapsed into my MS shuffle. My friend was immediately concerned and took me by the hand and she told me she wanted to help. I laughed and told her I was fine but I was terribly moved by her gesture. Once we were carefree little girls building igloos out of snow, playing street tag, and walking on home made stilts her father made. And now decades later I have trouble walking such a short distance without my disease showing itself. It was definitely a bittersweet moment.
I am quite sure that if you read this book you will find yourself more open to coping with your own vulnerabilities and human frailty. I did experience a feeling of gratitude in realizing all the wonderful gifts and choices I still have in this life. I am glad I spent those hours on the beach reading about a man who left the legacy of his words before his death. It was his words which helped me to understand that no matter what happens next, my life and yours has both meaning and purpose.
Published On: October 29, 2008