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Locked into the body's language

Brainstem stroke survivor Shawn Jennings recalls his own experience at a screening of The Diving Bell and the Butterfly. Sean Flinn speaks to the doctor.



Early in the first year of his own rehabilitation following a brainstem stroke, Shawn Jennings read Jean-Dominique Bauby's memoir, The Diving Bell and the Butterfly.

"A well-meaning relative gave it to me," Jennings, a doctor, medical and political activist for the disabled in Saint John, New Brunswick, says on the phone. He comes to Halifax next week to participate in a panel discussion after a free screening of the 2007 feature-film version of Bauby's story.

"Of course he dies in the end," Jennings says, adding, after a warm chuckle, "My relative didn't know that." Bauby died very soon after his memoir's publication in 1997.

Both Jennings and Bauby are part of an uncommon collective. Strokes more commonly occur in the brain. Those are "cerebral strokes," Jennings writes in Locked in Locked Out, his own memoir. "The brainstem is the canal through which all the messages from the brain are sent to the rest of the body. The brain is left perfectly intact, meaning that there is no confusion or personality change. The survivor is left imprisoned inside a body with no movement."

Though the body no longer moves, including for communication---people who've suffered brainstem strokes remain very much themselves, Jennings says. Rather than creating a mass of still limbs and aided basic functions, these crises draw more boldly the character, the individuality, of the person.

"What I admired about his book is that he didn't sugarcoat anything," Jennings says of Bauby's work. "He doesn't make himself more than he was." Jennings found Bauby could be "cruel" to the women in his life. "I didn't particularly like the man," he admits. But he respects him. For example, Bauby, an atheist, "doesn't make it another heartwarming story about finding spirituality---he could've," says Jennings, who explores in his own book how his crisis led to an exploration and experience of his own faded faith.

Jennings was 46 years old---content with his 20-year family practice, happily married to his wife Jill and proud of his three kids, whose ages spread from entering high school to heading to university---when his stroke hit on May 13, 1999.

Born in 1952, the year before Jennings, Bauby's stroke occurred on December 9, 1995. An editor at French Elle, whose personal flaws are honestly presented in both book and film, Bauby comes across as the restless, brusque and confident continental counterpart to Jennings' gentle, caring---but often anxious and worried---good doctor.

Bauby remains a writer at heart, delving into his "imagination," as Jennings puts it, to understand the experience and illustrate it for others. He evokes the effort required to communicate, including his sequence of the most frequently occurring letters in the alphabet, which visitors and staff list until he flickers his eyelid when a letter is called out, indicating its choice. He wrote his book with that technique.

Jennings writes about using a "gaze board" early on in his rehabilitation. He paces the gradual, step-by-step progression of his work with therapists, who become friends, from eye-flicker to the use of his left hand (he's right-handed), arm and shoulder---all the associated neurological signals and muscle groups. He learned to type on a keyboard to converse and to write this book, a major form of physical and emotional recovery, he says. His drive to walk again and return to speech are chronicled using both storytelling and medical voices.

"I tried to keep my medical lingo out of the pages," Jennings says. "That proved to be a big task---[it] kept slipping in." Thankfully it did, because readers get a fuller picture of him: compassionate, empathetic, interested in people and their individuality. His love for his family, and his thoughts on how families respond to and arrange themselves around crises, comes clear.

Jennings recalls encounters with patients, recognizing when he helped and failed them. Moments of breakdown and build-up are captured with detailed clarity: the challenge of turning over in his bed; the battle against the tightening "tone" of some muscles; sexuality, including some sudden ejaculations.

"Being a doctor and knowing what was happening to me helped me," Jennings says. "Fear of the unknown is worse than the reality.

The Diving Bell and the Butterfly screening and discussion, Monday, March 16 at the QEII Theatre, Halifax Infirmary, 1796 Summer, 7pm, free.

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