Locked into the body’s language

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.

This article appears in Mar 12-18, 2009.