There is so much to do: A review of The Diving Bell and the Butterfly by Jean-Dominique Bauby

Jean-Dominique Bauby was in the prime of his life working as editor-in-chief of internationally read French fashion magazine Elle when he suffered a catastrophic brain event while driving alone with his young son. The stroke, which in another time and place would have killed him, left him in a coma from which he emerged weeks later with what doctors term "locked-in syndrome". 

"Locked-in syndrome" was something I first learned of as a young child volunteering with my grandmother at the Provincial Sanatorium down the street from her house. She had nursed there for years and in her retirement she loved to visit the people she helped care for through her career. As a child, I recall feeling unsure of how I should act when walking into the rooms of people with such grave illnesses and conditions. "Don't stare, they didn't ask for their suffering." was the only advice I was given. As a young child it was very hard not to. Certainly, my smiles were welcome and returned by those patients who were able.

 I vividly remember my nanny speaking about a woman there who had lead a normal life until she had a stroke in her early forties and was left entirely unable to move or communicate with others. I never understood how, but they claimed that her brain was intact and she was fully aware of everything just as she had been prior to the brain incident. "She is trapped in her own body", I overheard the grownups say. 

This to me seemed a fate worse than death.

"What if her nose gets itchy or she needs to pee?" was the extent of where I went with my questioning to the adults in my life. How can she tell anybody how she's feeling? I achingly thought to myself.

So, it was with a  strange sense of relief that I read Bauby's post- stroke memoir entitled The Diving Bell and the Butterfly,  astonishingly written with the help of an aide and a letter board, one blink of his eye at a time. I say relief because his memoir gave me a glimpse into the mind of someone who as a quadriplegic in his forties was strapped into a wheelchair in a convalescent home called Berck-sur-Mer on the French Channel Coast. So like the "trapped in her body" woman of my childhood. His physical appearance was a shadow of his former vibrant self, but, and this is where the mercy of his words brings us to, he reveals to us a man whose brilliant mind is fully intact in both intellect and imagination. His is truly an instance where his body has become specter; a mere shell which carries the force of his indomitable spirit into the external world. 

"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." says Bauby in the prologue of the book.

There is so much to do? What could he possibly mean?  The woman "trapped in her own body" from my childhood sanatorium visits could do nothing without the help of nurses and aides, or so I naively thought. The heartbreak of that moment of realization for me was the cracking open of a soul to empathy. Perhaps the trapped woman in my childhood memory really did have a fiercely intact intellect as well? Besides, how much are any of us trapped by at any given point in our own lives?

There is so much to do. And Bauby has done much for opening up hearts and minds through the writing of this touching and lyrical memoir.

As Bauby proves through his apt descriptions of daily events in the naval hospital, the "unfortunates" who have landed in this place share the common bond of unasked for illness and infirmity--something which any of us are endlessly vulnerable to throughout our lives.

 In his chapter entitled Tourists, he describes those in  his neurology unit as "broken-winged birds, voiceless parrots, ravens of doom". Not an uplifting picture for sure. But what is uplifting and enduring throughout the short book (essentially a collection of touching and sometimes hilarious vignettes) is the dramatic ability of Bauby to articulate both his greatest depths of despair (the metaphor of the diving bell a perfect description of how he is constantly at the mercy of his physical limitations) as well as the soaring heights he reaches when his mind is free to roam beyond the confines of room 119, or the hospital hallways, or the beach outside the hospital walls (as butterfly). 

 The Bauby of this book may be a man confined by the ravages of stroke, but he most definitively is not a man defined only by those same ravages.

I read the book twice in a matter of days. I tend to be a fast reader and at times worry that I might miss something by moving through text too quickly. With this book I lingered. My sister-in-law who loaned me the book likened her read of it to eating good chocolate; she savoured and took her time with it recognizing the uncommon beauty of the scenes Bauby painted with his words. I liken my  own read to sipping a hot mug of tea while watching in wonder as the steam rises, and swirls into new shapes, new forms which all too soon dissolve. 

In reading this book I felt as though I was in a time warp of Bauby's creation. As though, with each new word I read I was edging along on the precipice of his borrowed time while my own sense of time no longer existed. I entered his strange new world entirely- a world where the very construction of meaning takes on new meaning. The ability of Bauby's post-stroke writing to so poignantly enliven and enlarge his new world to include us, the nameless and faceless readers, is a  true testament to the way the human spirit can prevail against the greatest of odds.

Not being given to reading fashion magazines Jean-Dominique Bauby pre-stroke, was a man I would never have known. Yet the stroke, while debilitating him physically, gave him a unique avenue for self exploration that few of us achieve while going about  the business of our everyday lives.

 How many unknown selves do we possess?

Jill MacCormack