A Personal Response to 'The Diving Bell and the Butterfly'

Picture, if you would, 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 your door. You arise to greet your visitor, but find you cannot. You raise your voice to speak, but no sounds form. You try to raise your head, but can’t move your neck. You’re writhing inside, but your body is still. The face speaks.

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

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The Diving Bell and the Butterfly sits on my bedside table. It has been a full day since I finished it. I am struggling with how to best express the appreciation I feel for Jean-Dominique Bauby, the book’s author. Like a French dessert, each exquisitely crafted sentence calls for the reader’s attention. The book is best slowly digested, allowing the flavor to unfold. His writing carries a sense of humor, intermingled with melancholy. I think he was a fan of Morrissey.

For those not familiar with Mr. Bauby, he was the editor-in-chief of Elle magazine in Paris. Bauby lived a full life, filled with women, fashion and writing. He was toying with adapting Alexandre Dumas’s classic tale, The Count of Monte Cristo. He states that “vengeance, of course, remained the driving force of the action, but the plot took place in our era, and Monte Cristo was a woman.” He was a man of culture and romance. But 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 had no control over his body. He was suffering from Locked-in Syndrome, a rare condition, which leaves the body paralyzed, but the brain fully functioning. Bauby was trapped in his own body and this is where his begins his story. At the time he wrote The Diving Bell and the Butterfly, Bauby was only able to blink his left eyelid and nothing more.

Bauby begins by describing how he woke from his coma to a room full of doctors and nurses, explaining to him that his life was changed. The person he was before was no longer. He was to be confined to a bed and a wheelchair, forever a prisoner in his own body. While there were plenty of dark times, Bauby does not focus on them very often. Many of the chapters are spent describing the hospital he lived at, past joys, his visitors and the nurses who cared for him.

Bauby maintains a cognitive, positive tone throughout the book, laced with sadness. He explains how 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 is able to take simple moments and express them with gratitude and longing. Gratitude for the moments his has been given and longing to live them again.

Most of the chapters in the book are fairly short, the longest at 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 his 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. When visitors would come to see him, Bauby humorously describes their attempts at using this alphabet but not paying attention to when he would blink. Often, they would be too focused on saying the letters in the correct order to pay attention. Ironic.


I had seen the film adaptation of Diving Bell in theatres just before Christmas and found it powerfully affecting. The film is what stirred my interest in reading the book and discovering more about Bauby’s life. In rare form, I found my reading of Diving Bell to be enhanced by having viewed the film. 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.

In preparing this response, I struggled with how to best relate my own life’s experiences to those of Bauby’s. His life is completely altered by this incredibly traumatic event. While I have never weathered a storm of that magnitude, I can relate to the hopes and fears he speaks of in his writing. For instance, I am quite claustrophobic. When I was nine years old, Mason and I were playing in a large snow bank, creating tunnels and forts like most bored prairie kids in the wintertime. I was attempting to tunnel through one side of the snow bank to the other. It was about five feet in depth. I managed to get most of the way in, burrowing my way through like a badger. As my digging neared completion, I came to realization I was stuck, firmly wedged into the tunnel and unable to back out. I will never forget the icy fear cutting through my veins. I panicked and started shouting and thrashing about, trying to free myself. Luckily, Mason came to my aid and helped pull me out. That was a small childhood terror, but it is a tiny sip of the cup Bauby had to drink from each and every day.

I find that Bauby speaks from a profound place of wisdom. He speaks from the place of a man who had much and had it taken away, but still found so much to live for. I found his voice to be a powerful example of the human spirit. Bauby is challenging the way we live our lives. I was wowed with the fact that in his condition, Bauby still did so much, including one of the things that I hope to accomplish: to author a book. His memoir does what any good memoir should: it expresses the beauty in life and the lessons learned. For a while, I’ve wanted to find a mentor, someone I could meet with once a month and glean wisdom from. Time waits for no one and soemtimes I fear that life will leave me behind before I get the hang of it. 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. 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 as I turn each page of his book.

I’d like to finish by looking at title of the book itself: The Diving Bell and the Butterfly. Bauby does not discuss why he chose this title, but I think it speaks 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, a creature built for flight and beauty. A beautiful being trapped inside an iron shell. The diving bell is his body and the butterfly is his mind. The written word is Bauby’s lifeline to the shore and to others. The written word give him air to breath.

Good writing gives me excitement for life. I am touched by the words and experiences Bauby describes in his book. What touches me most is now that I’ve read his words, how will I live them out?