To live in one's mind and not to lose one's voice



Last year my brother Gregory was hospitalized for 4 months at our local hospital. He survived a complicated lung problem. After a harrowing visit one morning, I was gazing at the garden of the home where I was staying. With my camera at my side, I managed to catch 'un papillon' (a butterfly) swirling around. I was intrigued. At that moment, I knew my brother would live - hope was flirting around the breakfast table. At that time, I was reading Jean-Dominique Bauby's Le Scaphandre et le papillon which recalls his own determination to live fully even though he was totally paralyzed. The book was made into a Hollywood movie entitled: "The Diving Bell and the Butterfly" dazzling in its portrayal of Mr. Bauby's life. Julian Schnabel released his version of this incredible story. Its effect is breathtaking. Fortunately for the director, it received immense accolades for its cinematography from Cannes and a Golden Globe Award for 'Best Foreign Language film and director.' Unfortunately for close friends of Mr. Bauby, huge discrepancies emerged and were exposed by them. One has to read both the book and view the movie to catch a glimpse of Jean-Dominique's undeniably heroic tribute to life, love, pain, suffering, regrets, hopes, dreams. I was smitten. Then, I began to understand my brother even better. He was unable to speak, conscious most of the time; ferocious in his desire to live for his wife and family.
   Unlike Mr. Bauby, Gregory pulled through. We thanked doctors/nurses, family/friends for their care and prayers.
This lone butterfly inspired me, reminding me of Mr. Bauby's story, though far removed from my brother's condition. Mr. Bauby, 43 years old, had suffered a massive stroke. When he woke up 3 weeks later, he could only blink his left eyelid. This condition is called 'Locked-in-Syndrome' in which one's faculties are intact even though, the body is paralyzed. He was cared for by many in a Normandy hospital. How did he communicate? A method called: 'partner assisted scanning.' Someone recites the alphabet over and over again. By blinking when the correct letter was reached, he was able to share his thoughts: word by word.
With great patience and perseverance, he dictated his book one letter at a time. The book was published in France in 1997. He died 2 days after its publication. Living in one's mind and thoughts - a terrifying, agonizing disposition!
   Mr. Bauby's life teaches me greatly about the ability of the human spirit - to live, to strive, to persevere. We, who have all our faculties, are graced by much more than we can imagine.
Such discipline of one journalist trapped in his own body showing me and perhaps, all of us, the possibilities of our human potential!