In 1995, Jean-Dominique Bauby was the editor-in-chief of a well-known French magazine, the father of two, and a man very much in control of his life. One day - without warning - he suffered a massive stroke and was transformed from an active forty-three-year-old professional man to a prisoner within his own body. Nearly a month after the stroke, he awakened from a coma able only to blink one eye, the victim of a condition called "locked in syndrome." In this syndrome, a person is cognitively aware but is unable to move or talk.
Eventually he was able to communicate to others that he was mentally functioning. With the help of a therapist, he learned a system of blinking his one good eye to indicate the letters of the alphabet in order to form words and sentences. He used this system to write The Diving Bell and the Butterfly, the poignant story of his experience.
Bauby died of pneumonia two days after the French publication of his book in March of 1997.
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Since our own fight to keep the doctor from pulling the plug on our son after his spinal cord injury in 1997, it has been my passion to learn as much as possible about people with devastating disabilities and to help others understand the struggles they endure.
In one of our nursing classes, the instructor showed us a clip of a 2008 movie about Jean-Dominique Bauby. I wanted to learn more about his story, but I decided to buy and read the book rather than watch the video.
After finishing the book, I did some additional Internet research on Bauby and locked-in-syndrome and discovered that the movie version is not accurate. The book flows unscripted from the mind of Bauby to the page. His talent for painting rich word pictures is all the more stunning when one remembers that he painstakingly dictated each word by blinking his one good eye. Ironically, his senses seem to have been honed sharper - rather than dulled - by his profound paralysis.
Bauby’s account of discovering some of his former associates were calling him a “vegetable” is heart-wrenching, as is his description of his brutal treatment at the hands of one doctor. Thankfully, not all medical professionals surrounding Bauby were so callous. Under other circumstances, Bauby might never have had an opportunity to speak from inside his prison. It makes me wonder how many times society dismisses those with disabilities as "vegetables." It makes me think we need to tread lightly when it comes to making decisions that may destroy someone who is desperately fighting for life.
As I read Bauby's story, I wept over his loss. I wept anew over our loss. I was drawn back to the reasons I chose nursing in the first place, before tests and competencies and endless stress buried me alive. I want to be a nurse who cares for those who can’t care for themselves and who speaks for those with no voice - an advocate for those fighting against all odds to live as fully as possible in bodies that are broken.
Surprisingly, the book is not depressing. It is the celebration of life from the perspective of one who experiences it from afar. It solidified my resolve to remember that the person always precedes the process when I care for others. When scheduling demands, changing societal norms, or my own ignorance of a particular medical condition threatens to pull me away from that resolve, The Diving Bell and the Butterfly sits nearby on my shelf as a solemn and powerful reminder.
This also makes me wonder how many times we dismiss those with disabilities as "vegetables." It makes me wonder how much we still need to learn about what is considered brain dead in an individual. It makes me think we need to tread lightly when it comes to making decisions that may cost the life of someone desperately trying to fight for life.
The Diving Bell and the Butterfly is not written from a Christian perspective, but Bauby's love for life and talent for "writing" make this an important read.
