DATE: Sunday, June 29, 1997                 TAG: 9706190559

SECTION: COMMENTARY              PAGE: J2   EDITION: FINAL 

TYPE: Book Review

SOURCE: BY DIANE SCHARPER 

                                            LENGTH:   92 lines

BEDRIDDEN TRAVELOGUE JEAN-DOMINIQUE BAUBY WROTE MOVING BOOK WHILE PARALYZED.

THE DIVING BELL AND THE BUTTERFLY

JEAN-DOMINIQUE BAUBY

TRANSLATED FROM THE FRENCH BY JEREMY LEGGATT

Alfred A. Knopf. 131 pp. $20.

What is so terrifying about ``locked-in-syndrome,'' a stroke to the brain stem, is not that it leaves its victims mute and paralyzed. Nor is it that they cannot breathe without the aid of a respirator and cannot eat without the aid of a gastric tube. It isn't even that they cannot swallow the saliva that endlessly floods their mouths.

What is so terrifying is that victims of ``locked-in-syndrome'' are fully aware of their condition yet cannot communicate that awareness. All they can do is blink.

Little is known about this syndrome. In the past, one had a massive stroke and simply died. But today, modern medicine, with its improved resuscitation techniques, can refine and prolong the agony. This agony is the subject of Jean-Dominique Bauby's book, The Diving Bell and the Butterfly.

The book consists of 131 pages ``patiently extracted from the void every afternoon for the last two months.'' Bauby, 43-year-old editor-in-chief of the French magazine Elle, is not speaking figuratively.

Bauby was a victim of ``locked-in-syndrome.'' Lying in a hospital bed day after day, he tried in vain to stretch his curled hands. He knew what it was like to ward off stiffness by stretching but only moving a fraction of an inch. He knew how it felt to sit - hunch is perhaps a better word - in a wheelchair, as threads of saliva drip from his closed lips.

His condition lasted a little over a year. After suffering a stroke, Bauby was comatose for 20 days. He awakened in the Naval Hospital at Berck-sur-Mer on the French Channel coast. He was paralyzed from head to toe - his mind intact - a prisoner in his own body.

Bauby told his story with the help of a language therapist. Letters were placed around his hospital room. The therapist read the letters aloud until, with the blink of his eye, Bauby stopped her. Soon they had a whole word and then fragments of more or less intelligible sentences. When she left, Bauby mentally composed what he called his ``bedridden travel notes,'' letter by letter.

``I churn over every sentence, delete a word, add an adjective and learn my text by heart, paragraph by paragraph,'' he says.

How ironic that one of the world's most powerful editors would be rendered so powerless and yet would write such a powerful book. Bauby died earlier this year, two days after the French publication of his book. That the book would be considered a lasting testimony to life suggests yet another irony.

The travel notes cover everything from business trips to Hong Kong to favorite foods to family and friends. Noticeable by its absence, though, is a sense of the transcendent. One would think a person this close to death would wonder about a Supreme Being and an afterlife. Bauby considers neither.

Moving from past to present to past, Bauby's mind wanders from one anecdote to another. These wanderings, the shifts in verb tense, and the lack of introductions to some of the people involved sometimes make the stories hard to follow. Yet, they are always extremely moving, not because of their content, but because of Bauby's perseverence.

The most evocative chapter occurs when Bauby describes his last moments ``as a perfectly functioning earthling.'' On Dec. 8, 1995, he awakened a little grumpily. Not knowing he would soon be changed as dramatically as was Gregor Samsa, hero of Franz Kafka's The Metamorphosis - the parallels between the two tales are chilling - Bauby shaved, dressed and rode to the office. Bauby planned to dine that evening with his son, Theophile, whom he hadn't seen since July.

Leaving the office at the end of the day, Bauby was overcome with exhaustion: ``I am functioning in slow motion, and in the beam of the headlights, I barely recognize turns I have negotiated several thousand times. I feel sweat beading my forehead, and when I overtake a car I see it double. At the first intersection, I pull over. . . . I have one idea in my head, to get to the home of my sister-in-law. . . . I feel extremely strange as if I had swallowed an LSD tablet. . . . I try to say something like `slow down. I'll get better. . . . ' But no sound comes from my mouth, and my head, no longer under my control, wobbles on my neck . . . ''

When one realizes that Bauby will never again speak, yet will write this book filled with riveting words, one glimpses the power behind this extraordinary memoir. MEMO: Diane Scharper is a poet who teaches memoir writing at Towson

State University in Towson, Md. ILLUSTRATION: Photo

ASSOCIATED PRESS

Bauby before his stroke

Graphic

ABOUT BAUBY

[For complete graphic, please see microfilm]

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