Extreme Perseverance

There was a brief news item the other day that captured my attention and reminded me of the heroes among us. Their circumstances strain the imagination. Few among us can even begin to comprehend the world through their eyes, yet they inspire us to appreciate our own gifts.

The late Jean-Dominique Bauby suffered a stroke and lapsed into a coma in 1995. Twenty days later, he awoke to a frightening new reality. Aware of his surroundings and mentally competent, he was completely paralyzed, able to move only his left eye.  Appropriately named “Locked-in Syndrome,“ this medical mystery knows no mercy.

But Bauby had a story to tell. And tell it he did, dictating an entire book by blinking his left eyelid. An interpreter sat by his bed, repeatedly reciting the alphabet until Bauby blinked to choose the next letter. It took approximately 200,000 blinks to tell his story. Just ten days after his book was published to rave reviews, he passed away. His book, The Diving Bell and the Butterfly: A Memoir of Life in Death, was made into a major motion picture in 2007.

Christopher A. Harmon inhabits a world difficult to fathom. Legally blind and deaf, he is confined to a wheelchair. He uses a respirator and must eat through a gastric tube. Due to a rare neurological condition known as Spino Cerebellar Degeneration, which struck at an early age, he has endured many obstacles.

Christopher cannot speak, but communicates with the help of sign language. An interpreter reads his lips and voices his words. Through this painstaking process he has become a successful author of fiction and is looking forward to becoming a filmmaker. I have no doubt that he will accomplish his goal.

“It doesn’t matter if your body doesn’t work the so-called “normal” way, it’s just a superficial machine,” says Christopher. “What matters is what you’ve got inside. All you need is a mind and a heart. I know a few people who will disagree with this, but my mind and heart work just fine.”

Stories like these leave me awestruck. Imagine having something so compelling to say, and yet no way of saying it. How many of us would have the strength of character to persevere in the face of such adversity?

Living with MS, I wonder if I have what it takes to accomplish my goals. The next time I begin to doubt myself, I will think of Mr. Bauby and Mr. Harmon. The list of things they were unable to do was lengthy, indeed, yet they did so much. I'm simply awestruck.