The movie The Diving Bell and The Butterfly is based on the memoir of Jean-Dominique Bauby. Bauby, editor of the French magazine Elle, had a serious stroke in 1995 that left him with locked in syndrome, a condition in which he had full cognitive and emotional capacities, but could not speak or move, other than to blink his eyes. There is no cure for the condition. On Tuesday, January 20, 2015 the Washington Post reported the story of a South African man who experienced total locked in syndrome as a teen. No one knew he had thoughts and feelings until he was 26 and began using a computer to communicate.
As one who studies aliveness and creativity, the stories of Bauby and Martin Pistorius give me pause. How does one find the will to live when life is lying on one’s back unable to communicate or move? How does one find meaning living in a state of profound physical disability with full cognitive capacity? Bauby’s therapists discovered he could communicate through blinking his one remaining eye. (The other eye had to be sewn closed.) He dictated his memoir by blinking each time the therapist, reciting the French alphabet, reached the letter he wanted to communicate to her. Each word took about two minutes to discover and the memoir required 200,000 blinks! Pistorius, going mad watching Barney reruns on TV, discovered he could track the sunlight moving across the room in the care center he attended. That gave him the hope he needed to keep going. Still with locked in syndrome, he is married and has a job!
For Bauby, the diving bell referred to his physical condition of being a prisoner, weighed down by his immobile physical body. The butterfly signified the freedom his imagination and memory afforded as he traveled the world and created his life within his mind.
How are you most alive? How do you use your imagination and creativity to create more richness and fullness in your own life? The amazing abilities of Bauby and Pistorius show us something about what being alive truly is. As we reflect on their willful capacity to live full lives under profoundly disabling circumstances, we all move a little closer to finding our own profound meaning and worth as living, breathing human beings.