Jean-Dominique Bauby and His Last Gift to the World

Welcome to Throwback Reviews, a monthly review of a book that has been available to the public for some time, but its impact is still prevalent. This month, we’re reviewing The Diving Bell and the Butterfly by Jean-Dominique Bauby.

Jean-Dominique Bauby’s Last Gift: The Diving Bell and the Butterfly

Imagine being at the peak of your life. You’re the editor-in-chief of a renowned publication, driving sports cars, and writing about high-profile celebrities. On top of that, you’re in France, enjoying life with your family during Christmas time. You feel unstoppable, but, suddenly, you suffer from a severe stroke—a stroke so severe that you fall into a coma.

The coma goes on for weeks, but thankfully you regain full consciousness. But there’s a problem. You can’t move any part of your body, not even your eyes. Moreover, you are unable to talk. Doctors come in and work on you as if you’re still in a coma. After several days of being unnoticed, a nurse finds out that you can move your left eyelid and that you have been fully conscious this whole time. You feel like yourself and you haven’t lost any cognitive ability, but your mind is trapped in your own body, with no movement on the horizon. It sounds like a nightmare scenario, but this is what happened to the late Jean-Dominique Bauby.

Bauby was the editor-in-chief of the French magazine Elle before suffering such stroke to his brainstem. He was 43 at the time. His life was turned upside down in December of 1995 when he found himself trapped in his own body. Neurologists call this rare phenomenon “lock-in syndrome,” which is related to damage to the pons (part of the reptilian brain). Patients find themselves trapped in their body and it sometimes takes months or years before being noticed as fully conscious. As Michael Gazzaniga explains in his book Consciousness Explained, Bauby was one of the lucky ones since he could communicate with his left eyelid—some patients can’t even do that.

Life After Lock-In Syndrome

After recognizing the movement of his left eyelid, Bauby did what any sensible, big-time writer would do in such situation: he wrote a book. The Diving Bell and the Butterfly was a product of Bauby’s arduous method of memorizing sentences, then through a French alphabet, blinking the letters that told the story of his fatal situation. After thousands and thousands of eyeblinks, Bauby gave the world his last gift.

In the book, Bauby opens with a reflection on his situation:

“No need to wonder very long where I am, or to recall that the life I once knew was snuffed out Friday, the eighth of December, last year.

Up until then I had never even heard of the brain stem. I’ve since learned that it is an essential component of our internal computer, the inseparable link between the brain and the spinal cord. That day I was brutally introduced to this vital piece of anatomy when a cerebrovascular accident took my brain stem out of action. In the past, it was known as a ‘massive stroke,’ and you simply died. But improved resuscitation techniques have now prolonged and refined the agony. You survive, but you survive with what is so aptly known as ‘locked-in syndrome.’ Paralyzed from head to toe, the patient, his mind intact, is imprisoned inside his own body, unable to speak or move. In my case, blinking my left eyelid is my only means of communication.”

Bauby then goes on to give us a tour of his new life. A life surrounded by “white coats,” sad faces and strangers that find him and his state, inhuman. Bauby describes his life at the hospital, how medical teams treat him, his memories, and even his struggles with a wheelchair.

In a chapter titled “The Vegetable,” Bauby talks about the letters that he gets and how revealing these are about some people he had only met on brief occasions:

“I receive remarkable letters. They are opened for me, unfolded, and spread out before my eyes in a daily ritual that gives the arrival of the mail the character of a hushed and holy ceremony. I carefully read each letter myself. Some of them are serious in tone, discussing the meaning of life, invoking the supremacy of the soul, the mystery of every existence. And by a curious reversal, the people who focus most closely on these fundamental questions tend to be people I had known only superficially. Their small talk has masked hidden depths. Had I been blind and deaf, or does it take the harsh light of disaster to show a person’s true nature?”

On other pages, Bauby reflects on his family and what it means to be in “lock-in syndrome” when your close ones are full of energy:

“Hunched in my wheelchair, I watch my children surreptitiously as their mother pushes me down the hospital corridor. While I have become something of a zombie father, Théophile and Céleste are very much flesh and blood, energetic and noisy. I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders.”

Bauby’s book is a tour de force through the deep and depressing layers of Berck Hospital. “When I am wheeled through their smoke-filled lair, the silence becomes deafening; I see neither pity nor compassion in their eyes.” He later adds when summer is almost over and his life will remain in the same place:

“But here at Berck I hear only the faintest echoes of the outside world’s collective return to work and responsibility…its return to the world of literature and journalism and school, to the workaday world of Paris. I shall hear more about it soon, when my friends start journeying back to Berck with their summer’s worth of news.”

Last Word on The Diving Bell and the Butterfly

Bauby’s beautiful depiction evokes a variety of emotions that can range from sympathy to just pure sadness. He knows when to makes us laugh, and he doesn’t offer a completely sad story. On the contrary, you would believe that he tries on various occasions to bring a ray of sunlight into his dark situation. But it is always apparent that his fate is sealed, and these words are the last breath of a once joyful and charismatic life. After the publication of this book in 1997 (in French), Jean-Dominique Bauby died. His book was a gift that still, to this day, will make any human reflect on the vulnerability of human life and its strange twists of fate.

For more Throwback Reviews, check out LWOS Life: Literature.

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