In 1995, Jean-Dominique Bauby suffered a stroke while driving his son to a night out at the theater. When he woke up from a coma three weeks later, he found he could no longer move or speak. He sustained damage to his brain stem rending him completely paralyzed, a rare condition known as locked-in syndrome.
The tragedy of locked-in syndrome is that the victim is left fully conscious with their mental cognition intact¹, but is wholly trapped in an unresponsive body.
This is Bauby’s story.
The Man Who Lost Everything
The Man Who Lost Everything
Locked-in syndrome has varying degrees of severity. But what was unique about Bauby’s situation was that he was able to retain the ability to wiggle his head and blink his left eye.
What’s even more miraculous however is that Bauby was able to write a book about his experience. Yes, a book.
Bauby would painstakingly blink to dictate each letter, eventually forming a word. Then a sentence. Then a paragraph. Until finally he had a book. He explains, ‘It’s simple enough, you read off the alphabet . . . until, with a blink of my eye, I stop you at the letter to be noted. The maneuver is repeated for the letters that follow, so that fairly soon you have a whole word'.²
Perhaps simple in theory, but much harder in practice. Imagine carefully crafting each word and mentally reviewing each edit. And then holding on to the thought until someone can come and record it. (To say nothing of trying to remember what was already written). Anyone who has tried to write can appreciate the mental determination this must have taken.
It is amazing that we have this book today. It’s titled, The Diving Bell and the Butterfly.
The diving bell was Bauby’s prison. His physical condition—doomed to watch life pass him by. But, he was also able to escape it all. Through his imagination, he could leave his body behind and let his mind take flight—like a butterfly.
'There is so much to do...You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions...You can sit down to a meal at any hour, with no fuss or ceremony. If it's a restaurant, no need to call ahead. . . . The boeuf bourguignon is tender, the boeuf en gelee translucent, the apricot pie possesses just the requisite tartness'.³
Lessons Learned
Lessons Learned
The Diving Bell and the Butterfly is an extraordinary narrative that explores the depths of the human mind in the face of tragedy. I’ve recently just finished reading the book and I’m reminded of what’s really important.
It feels trite to say that life is fragile. But, Jean-Dominique Bauby was otherwise a healthy 43-year-old man when tragedy struck. He had two young kids at the time. And his anguish can be felt off the pages as he describes being haunted by his inability to communicate his love to them. Yet at the same time his words convey no sense of self-pity.
While Bauby was the same person, he was also completely different. Because of his condition, some people came to see him as a ‘vegetable’—worse, he sometimes felt treated like one too. Reduced to an existence of being unseen, Bauby longed for connection. He treasured all the letters his friends and family sent him. Sundays were his ‘long stretch of desert’—because if he was ‘unlucky enough’ to have no visitors, he would often be left alone. (Speech pathologists and therapists didn’t work on Sundays). His story is a gentle reminder that we need each other. And a little bit of kindness can go a long ways.
Bauby also showed that our bodies are the way in which we experience many of the pains and pleasures of life. In his condition, Bauby was still able to feel physical pain. And even though he could escape—like a butterfly—he still looked forward to being pushed in his wheelchair next to the french fry stand just so he could enjoy the ‘intoxicating’ smell.
Bauby’s writing is just as poignant as it is witty. He joked that he had just started a diet prior to the stroke, but didn’t expect to lose 60+ pounds in 20 weeks. Clinging to any dignity he had left, Bauby preferred his own clothes over the hospital gowns. He contended that if he had to drool, it might as well be on his own cashmere. Bauby showed that when life is profoundly unjust, humor can make a tough road feel a little less bumpy.
Final Thoughts
Bauby’s story is heartbreaking and inspiring. He was able to blink an entire book. Because each word cost extreme effort, we can learn just as much from what wasn’t written.
Bauby died only two days after his book was published in 1997. But I’m grateful he taught us this lesson: you can use your pain to create something beautiful.
- M Das J, Anosike K, Asuncion RMD. Locked-in Syndrome. [Updated 2023 Jul 24]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK559026/
Bauby, J. (1997). The Diving Bell and the Butterfly. Knopf.
See footnote#2