c. 1997 Religion News Service

(Dale Hanson Bourke is publisher of Religion News Service and author of”Turn Toward the Wind.”)

UNDATED _ Where does life end and death begin?

It might sound like a philosophical question unless you have watched a loved one’s lingering demise. Then, confronted with an array of medications and interventions, you must face a new dilemma with each decision: Are you prolonging life or cheating death? Are you selfishly holding on to someone when you should be letting go?

Thanks to advances in medicine, fewer of us die theatrical deaths _ a final-act gasp, a word of adieu and a graceful slump to the stage. Instead, we are more likely to hang on for three acts or more, straining the patience of anxious relatives as we become a strange parody of our once-vital self.

Some hold on to physical health long after the mind has moved on, leaving loved ones to ponder what has become of the person who once inhabited the shell.

And then there is a third, more terrifying scenario. It’s when the mind remains totally cognizant and completely functional, yet trapped in a body that no longer works. Aptly called”locked-in syndrome,”it imprisons the mind in a useless body that taunts the victim.

This situation creates perhaps the greatest need to ponder questions about life and death, for this tortuous condition would be unbearable for most of us.

It could have been torture for Jean-Dominique Bauby, a vital 43-year-old man who, as editor in chief of Elle and the father of two young children, was known for his wit, style and passion. Living life to the fullest seemed his greatest preoccupation until one December day, when in full swing, he was suddenly felled by a brain-stem stroke.

Awakening from a coma, Bauby was shocked to discover a doctor stitching his right eyelid shut. Slowly he became aware that his body was so utterly useless that the only function he had left was the ability to blink _ and only with his left eye.

Unable to communicate through speech or gesture, Bauby is left to observe life as if encased in a diving bell. But his mind, still nimble and brilliant, cannot be held down. It soars like a butterfly, remembering the life he had and imagining the one he dreams of.

These contrasting metaphors are the title of Bauby’s book describing his experience,”The Diving Bell and the Butterfly”(Knopf). Long holding the top spot on the best-seller list in France, it was translated into English and released last week in the United States.

This 132-page book seems small until you learn it was dictated letter by letter using an alphabet developed for Bauby, who blinked out his thoughts.

What is revealed in these pages leads us back to the question: When is life worth living? For it seems clear to anyone who sees Bauby lying in his bed that he is more dead than alive. But reading this remarkable book shows the witty, passionate man inside the motionless body is no closer to death than during his last vigorous days.

Bauby began writing the book after he learned someone described him as a”vegetable”during a luncheon at a chic Paris restaurant.”I would have to rely on myself if I wanted to prove that my IQ was still higher than a turnip’s,”he writes.

And so Bauby begins a remarkable correspondence so others”… can join me in my diving bell, even if sometimes the diving bell takes me into unexplored territory.”Without a hint of self-pity, Bauby discusses imagined journeys and very real conversations. He replays scenes from his life and fictionalizes fantasies. He observes his useless body but rises above it to enjoy the tastes and sensations he will never again experience physically.

Bauby is touched by his visitors and those who correspond with him, finding that some of his once-superficial friends now reveal hidden depth.”Had I been blind and deaf, or does it take the harsh light of disaster to show a person’s true nature?”he wonders.

Mostly, though, Bauby seems intent on living the life he has left to the fullest, letting others know that even if he can’t run or shout, his mind still soars.

For anyone who has ever contemplated the question of when life ends and death begins, this book offers an authoritative voice from the other side. Bauby shows us how little we understand about life and death, and how the quality of one’s life may not always be what it seems.

MJP END BOURKE