Losing one’s health and being unable to regain it are profoundly transformative experiences. The body suddenly becomes more than an appendage of the mind, as it is treated when everything is going well, while the mind becomes its prisoner.
Can the mind triumph in a body that has almost completely turned into a prison? The story of Jean-Dominique Bauby demonstrates the astonishing power of the spirit, which finds its way to freedom even under the most brutal conditions.
He was one of those people who lived life at full speed and with gusto: editor-in-chief of Elle magazine, well known in Parisian high society, ambitious and charismatic. He was 43, divorced, and had two children, Céleste and Théophile. He was always on the move, so he did not see his children very often. Toward the end of 1995, a stroke suddenly brought his momentum to a halt and plunged him into a coma for three weeks.
Jean-Do, as his friends called him, awoke on December 29, 1995, in a body that no longer responded. He could not move anything, not even speak, and his life was being artificially sustained with the help of machines. He was suffering from locked-in syndrome, a very rare condition that manifests itself through total paralysis. The brain loses none of its capacity, but the only means of maintaining contact with the outside world are the eyes.
When his right eyelid had to be sewn shut because the eye was not receiving adequate circulation, the despair that the same thing might happen to his other eye before he could show them that he was fully conscious was unbearable. Fortunately, the eye remained healthy, and before long the nurses were able to notice his attentive gaze and meaningful blinks. One of his therapists, Sandrine Fichou, devised an ingenious method of communication that allowed him to convey more than just “yes” and “no.” She recited the letters of the alphabet one by one, in order of frequency of use in the French language, and Jean-Do blinked when she reached the appropriate letter, until a word was formed.
In 1996, with Sandrine’s help, he wrote more than 60 letters to friends and associates, convincing them that he was not in a vegetative state. Just before the stroke, he had signed a contract with the French publishing house Laffont to write a book, and the letters that reached the publisher caused a sensation. The publishing house offered him the opportunity to write a book about his illness, and he accepted.
Claude Mendibil, an editorial assistant, was sent by the publisher to use Sandrine’s method to write the book. Jean-Do would wake up at 5 a.m. and, until noon, when Claude arrived, memorize everything he wanted to write. He would then “dictate” by blinking for three to five hours, until he grew tired. A word of average length took them about two minutes. Before long, the connection between the two allowed them to increase the pace, as Claude could intuit a word from even the first letter she received as a clue.
It took more than 200,000 blinks to write the 137-page book. In it, he wrote about pain, helplessness, boredom, and how deeply he longed for simple things. “I would be the happiest man in the world if I could just properly swallow the saliva that permanently invades my mouth.” But more than these physiological desires, he wrote about the heartbreaking pain of being unable to express his love: “Theophile, my son, is calmly sitting there, his face 20 inches from my own, and I, his father, do not have the simple right to touch his thick hair…to hold tight his warm little body…Suddenly, that fact begins killing me”.
All these painful revelations were often interspersed with humor, self-irony, and a zest for life. Throughout his account, Jean-Dominique Bauby remained a whole person, full of emotional complexity, ambition, desire, and dignity despite his physical limitations, and that is what ultimately makes his story a tribute to life.
He titled the book Le scaphandre et le papillon (“The Diving Bell and the Butterfly”), the diving bell being a metaphor for his confinement within himself, and the butterfly a metaphor for what helped him break free: his imagination. Because in imagination, “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.”
Two days after finishing the book, in 1997, Jean-Dominique Bauby died of pneumonia. In addition to the book, he left behind an association for victims of the syndrome and their families, and he appeared in a French documentary that sought to draw attention to the challenges they faced. He had planned to write other books as well, driven by a tireless desire to live, to grow, and to create. “He loved life, and he lived it intensely–both before and after his accident,” said Susanna Lea, one of his collaborators at Laffont publishing house. Even his death he defined as a continuation of the search: “Is there a key out in the cosmos that can unlock my bubble? A currency valuable enough to buy my freedom? I have to look elsewhere. I’m going there.”
Andreea Irimia uses Jean-Dominique Bauby’s story to illustrate the power of imagination and the human spirit to rise above even the most terrible circumstances in life. A version of this article first appeared on the Signs of the Times Australia/New Zealand website and is republished with permission.
