Picture your bed. Imagine yourself propped up by your pillows, lying still. Your head is turned slightly to the left. Sunlight streams in through your bedroom window. A face appears at the door. You arise to greet the visitor, but realize you can’t move. You raise your voice to speak, but no words form. You try to raise your head but it won’t budge. You’re writhing inside as your brain explodes with panic. The face speaks:

“I wonder when he’s going to wake up.”

********

The Diving Bell and the Butterfly sits on my bedside table. It has been a full day since I finished it and I’m struggling with how to best express my appreciation for the author, Jean-Dominique Bauby. Like a fine French dessert, each exquisitely crafted sentence should be savored. Bauby’s writing carries a sense of humor, intermingled with melancholy, that calls for close reading and slow digestion. He must have been a Morrissey fan.

For those not familiar with Mr. Bauby, he was a former editor-in-chief of the Parisian version of Elle magazine. Bauby lived a full life, filled with women, fashion and writing. During his heyday, he toyed with adapting Alexandre Dumas’s classic tale The Count of Monte Cristo. He states in the book that “vengeance, of course, [would] remain the driving force of the action, but the plot [would] take place in our era, and Monte Cristo [would be] a woman.” He was a man of culture and romance. However, at the age of 43, Bauby suffered a massive stroke that left him in a coma for twenty days. Upon awakening, he found himself mentally sound but he had lost control over his body. He suffered from a rare disease known as Locked-in Syndrome, which leaves the body paralyzed but the brain functioning at full capacity.

Bauby was trapped in his own body and this is where his story begins. At the time he wrote The Diving Bell and the Butterfly, Bauby was only able to blink his left eyelid and nothing more.

For dramatic effect, let’s repeat that last line: At the time he wrote The Diving Bell and the Butterfly, Bauby was only able to blink his left eyelid and nothing more.

Unbelievable, but true.

Bauby begins this magnificent book by describing his awakening from the coma. His brain registered a room full of doctors and nurses, all explaining how his life was now forever changed. The person he was before (in a bodily sense) no longer existed. He was to be confined to a bed or a wheelchair forever, a prisoner in his own body.

While there were plenty of dark times, Bauby does not focus on them very often. Most of the chapters are spent describing the hospital he lived at, his past joys, visitors and the nurses who cared for him.

Bauby maintains a cognitive, positive tone throughout the book, laced with the most bittersweet sadness I’ve ever encountered. The inability to stroke his son’s hair or kiss his daughter on Father’s Day leaves him feeling helpless.

“I am torn between joy at seeing them living, moving, laughing or crying for a few hours, and fear that the sight of all these sufferings – beginning with mine – is not the ideal entertainment for a boy of ten and his eight-year-old sister.”

I was moved by Bauby’s simple yet eloquent use of language. He takes simple moments and expresses them with gratitude and longing. Gratitude for the moments he still has and a longing to relive his glory days.

Most of the chapters in the book are quite short. The longest is nine and a quarter pages. The manner in which Bauby dictated his memoir is simply incredible. A therapist assigned to rehabilitate him rearranged the French alphabet, from the most commonly used letters to the least. Bauby would blink when the nurse would utter the desired letter, allowing him to communicate with people in the outside world. Thus, he composed and edited this entire book in his head. Each day he would create, edit and memorize everything he wanted to say before his nurse arrived, allowing him to dictate each sentence perfectly on the first try. When visitors would come to see him, Bauby humorously describes their attempts at using this alphabet but how they would often not pay enough attention to his blinking. Bittersweet irony.

I had seen the film adaptation in theatres just before Christmas, prior to reading the book. The film was incredibly moving and sparked my interest in reading the book so I could discover more about Bauby’s life. In rare form, the film version of Diving Bell enhanced the book immeasurably. Approximately forty minutes of the film is shot soley from the perspective of Bauby’s left eye. It’s gives you an entirely new appreciation for how he saw the world when you read his book.

In preparing this response, I struggled with how to best relate my own experiences to those of Bauby’s. His life was completely altered by this event. While I have never weathered a storm of that magnitude, the power of Bauby’s writing rests in his ability to connect with the reader. I can relate to the hopes and fears he speaks of in his writing. For instance, when I was nine years old my brother and I were playing in a large snow bank, creating tunnels and forts as bored children tend to d in the wintertime. I was attempting to tunnel through one side of the snow bank to the other, about five feet in depth altogether. I managed to get most of the way in, burrowing my way through like a badger in a down jacket. As my digging neared completion, I came to the realization I was stuck, firmly wedged into the tunnel and unable to back out. I will never forget the icy fear that sliced through my veins. I panicked and started shouting and thrashing about, trying to free myself. Luckily, my brother came to my aid and helped pull me out. That was a traumatic childhood terror but it was a tiny sip of the cup Bauby drank from each day.

Bauby speaks from a profound place of wisdom. Here is a man who had so much and had it taken away, yet he still found much to live for. His voice is a powerful, enduring example of the human spirit. Bauby’s tenacity and perserverance should challenge the way we live our lives. In his condition Bauby accomplished one of the things I’m working towards: authoring a book. His memoir expresses the beauty in life and the hard lessons learned. Time waits for no one and soemtimes I fear that life will leave me behind before I can get a firm grasp. Bauby’s words ring especially true in this season of my life. When he was my age, he was working on an up-and-coming newspaper, living in Paris and boldly pursuing his career. I feel that my life is slowly taking semblance and shape but I want more. I want to taste the marrow of life, to suck it right out of the bone. I can feel Bauby engaging with my mind from the grave, watching me and prodding me to live life with the gusto he had.

Bauby does not discuss why he chose the title The Diving Bell and the Buttefly but it seems to speak for itself. Diving bells were used to submerg people into the ocean depths. A person was locked inside, unable to move or see outside the porthole provided. Now imagine a butterfly inside that iron shell, a creature built for flight and beauty. A beautiful being trapped, a prisoner in the very thing keeping it alive. The written word is Bauby’s lifeline to the world above the water.

The written word gave him air to breath.

by Cail Judy

Written February 2008 / Revised March 2010

Illustrator unknown

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