The Butterfly in the Diving Bell

In 1995, Jean-Dominique Bauby was at the top of his game. He was the high-powered editor-in-chief of the French Elle magazine. He had a beautiful home and plenty of money, two sweet children and a beautiful new girlfriend. He reveled in good food and good wine. He was well-liked, and well-loved. He had plenty of friends in high places. He was 43 years old, and he was one of the movers and shakers.

Then one day, in the blink of an eye, everything changed.

The day had started like any other, hectic and stressful. Meetings and decisions and people to deal with. And then, at the end of the day—rush hour—bumper to bumper traffic.

His chauffer was driving him back from his ex-wife’s house, where he had just picked up his 12-year-old son for a weekend visit, when suddenly the world seemed to slow down. Sweat beaded his forehead. He was seeing double. Then he collapsed. The next thing he knew, he was in the hospital. He had been in a coma for 20 days.

By all accounts, he looked like a complete vegetable. He couldn’t move at all. Except for his left eye. He could blink his left eyelid. And soon enough people figured out that they could communicate with him if they asked yes or no questions. He blinked when his answer was yes. His condition was called “locked-in syndrome.” He was locked in his own body.

He laid there all day every day in a hospital bed by the sea, hooked up to machines. A gastric tube fed him his meals. He lost 66 pounds in 20 weeks.

He could hear, but not very well. His right ear was completely blocked; his left amplified and distorted all sounds further than 10 feet away. When his attendants forgot to close the door to his room, shoes echoed on linoleum, carts crashed, and he could hear the woman across the hall scream “Fire!” every time she wanted a glass of water. For Jean-Dominique, the noise was excruciating.

He could see, but one day, the ophthalmologist bent over him with a needle and thread and sewed his right eye shut. The eyelid wasn’t working properly and he risked damaging his cornea.

But his mind wasn’t paralyzed at all. He did not stop thinking. He ran on full-throttle, planning a thousand projects, convinced he would recover quickly and leap back into the life he had left behind.

And then one day a bevy of doctors and attendants wheeled a wheelchair into his room, and one of the attendants wrestled his limp body into the chair. The occupational therapist announced, “You can handle the wheelchair,” and suddenly Jean-Dominique realized his future was something vastly different from what he had been envisioning. Things became clearer after that. He gave up his grandiose plans. His life would be in this hospital bed, in this chair. For the rest of his life he would be fed through a tube. There would be no more extravagant meals or fine wine. He would depend on others to bathe him and shave him, to change the channel on the TV, to send letters, to read to him, to wipe the drool from his mouth, to shut the door when they left the room.

Then one day, his guardian angel appeared in the doorway. Her name was Sandrine, and she was his new speech therapist. And she came up with a brilliant plan. She realized that she could help him do more than blink his eye “yes.” She redesigned the alphabet, placing the letters used most frequently at the beginning, and those used least at the end. And she recited this new alphabet to Jean-Dominique one letter at a time, until he blinked his eye. In this way, Jean-Dominique was able to communicate what was happening inside his locked-in mind.

Six months after being “locked in” he started to his memoir. He composed each chapter in his mind, editing as he went, and then memorized it. Then, when his transcriber, Claude, arrived, they unearthed each word, letter by letter, until his chapter was complete. For two months, in July and August of 1996, Claude sat down by his bedside and transcribed Jean-Dominique’s words into his notebook. Each day, while he imagined and wrote, he was free.

He called his book The Diving Bell and the Butterfly. His body was like a diving bell. It locked him in. But his mind was like a butterfly, free, and when the door to his room was closed and the silence returned, he could hear butterflies fluttering inside his head.

It was, according to Newsday,
“An admirable testament to the unkillable self, to the spirit that insists on itself so vehemently that it ultimately transcends and escapes the prison of the body.”
The New Yorker wrote,
“The sentences soar, unburdened by self-pity or despair, and the progression of short, lyrical chapters begin to resemble the beating of wings.”

Just two days after his book’s release, Jean-Dominique passed away. His work was done. He had gone down to the deep in his diving bell. He had gone down to the deep, and he had come up again. And now that his work was done, Jean-Dominique Bauby was released.

-Adapted from The Diving Bell and the Butterfly: A Memoir of Life in Death, by Jean-Dominique Bauby. Vintage Books: New York, 1997.