Locked-in Syndrome

Rising Above Adversity: The Amazing Story of Jean-Dominique Bauby

His mind was sharp, but his vision was blurred.  He could think, but could not talk.  He wanted to write, but could not use his hands.  With one eye sewn shut, his only means of communication was by blinking his left eye.  Yet with all his obstacles and challenges, he was able to ”write” a bestselling book that was turned into a movie.  Who am I talking about?  Jean-Dominique Bauby the author of “The Diving Bell and the Butterfly”.

There are stories that entertain, stores that scare, and stories that motivate.  This is a story of motivation, perseverance and accomplishment in the face of adversity and debilitating paralysis. Every now and then you come across a story so powerful and compelling, that it grabs you by the throat and just won’t let go.   Such is the nature of the true story of Jean- Dominique Bauby – locked in his body as one is in entombed in a diving bell, yet free to wander, dream and travel to faraway places using only his mind.

Jean-Dominique was the editor of the French ELLE magazine and lived a fast pace life in the world of fashion. Then on one day in 1995 he had a massive stroke that left him completely immobile except for the movement of his left eye.  Unfortunately he was the victim of a extremely rare condition called Locked-in Syndrome.  Now, just take a moment to absorb Jean-Dominique’s condition – you’re mind is perfectly fine, you feel pain, hot and cold, a bead of sweat rolling down your forehead, but the only thing you can move is your left eye.  How would you react?  Would you be able to turn your condition into something positive?

Locked-in Syndrome is characterized by full body paralysis usually caused by a massive stroke, traumatic brain injury or even by a drug overdose.  Many times the only thing a victim can move is their eyes while their brain is typically undamaged.  Jean- Dominique’s mind was fully functioning, aware, and learning to cope with his new body while the blinking of his left eye was his only means of communication.  Imagine for just a moment what it would be like to  lie perfectly still,  and the only thing you can move is your left eye.  As an experiment – try to read the rest of this article using only your left eye.  Go ahead.  It’s the least that you can do.

Learning to “write”

The therapist assigned to Jean-Dominique devised a means to communicate by organizing the letters of the alphabet by their frequency and reading each letter.  Jean-Dominique would blink once when the correct letter was read that matched the letter in the word he was thinking.  He would painstakingly spell each word in the sentence he was thinking.  Using this method Jean- Dominique was able to pen his memoir.  He tells how he would mentally write, edit and rewrite his sentences before communicating them to his therapist.

Making a Choice

”My diving bell becomes less oppressive, and my mind takes 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” –

    Jean-Dominique Bauby

The above quote from Jean-Dominique speaks volumes about his character and his ability to overcome adversity.  Jean-Dominique had a choice to make:  He could either lay there and play the part of a vegetable or accept his situation and try to make some good of it.  Fortunately for us, he chose the latter. Using only his mind, he was free to wander the world, visit with friends or imagine himself in another time.  With a blink of an eye, he wrote a book.  What is it that makes some people “overcome” adversity, while others never really seem to recover?

Question:  Would you have the strength to make the same choice?

1. Accept your situation.

This is easy to say and hard to do.  But, if you want any chance of overcoming adversity of any kind, you first have to accept the cards you were dealt.  It’s ok to visit pity city, but at some point you have to leave it all behind.

Another great example of someone accepting and making the best of a situation is Randy Pausch, the author of “The Last Lecture”.  Here’s a guy at the pinnacle of his career, a loving wife and three young kids, who finds himself with tumors in his liver from pancreatic cancer.  His is given three – six months of “good health”, before the inevitable happens.  Randy gives his last lecture at Carnegie Mellon University and becomes a phenomenon in his final months.  His lecture if full of his life’s lessons and bits of wisdom that we all should follow.

2. Focus on what you can do

Blink and think – that’s all Jean-Dominique could do.  By using a single eye movement (one that we take for granted), he was able to write letters to friends and family and eventually write a book.  .

3. Be prepared for hard work

Hard work and setting goals is the key to overcoming adversity.  Writing a book with the blink of an eye or writing and delivering your last lecture while undergoing chemotherapy treatment, all take hard work.  Jean-Dominique was able to do it, Randy Pausch did it and so did Lance Armstrong.  They set goals for themselves and worked to achieve those goals.  One can experience great satisfaction and a sense of accomplishment when you achieve your goals.

Question:  Have you written down your goals and developed a plan to achieve them?

4. Be persistent – nothing comes easy

Tenacity is the key.  Many times people give up after a failure or an obstacle is put in their path.  Walls are meant to be torn down, climbed over or pushed through.  Never, ever give up!  What did Thomas Edison say?  “I have not failed.  I’ve just found 10,000 ways that won’t work”.  He only needed to find one way to make the light bulb work and change the world.

Question:  Were you able to read the rest of this article using only one eye?

While The Diving Bell and the Butterfly is the story of one man’s struggle with Locked-in Syndrome, it’s also a lesson in overcoming adversity.  Against all odds, Jean-Dominique Bauby was able to show us that no matter how disabled or incapacitated, one can still make an impact on the world.

How are you going to make your mark on the world?

External Resources:

Book:  The Diving Bell and the Butterfly

Book:  The Last Lecture

This post was written by Victor Stachura.