Trapped in a paralyzed body, Rothesay doctor still feels joy
Dr. Shawn Jennings reflects on 24 years of living and working after a brainstem stroke
Seeing him now, with his twinkling eyes and enthusiasm for life, it's hard to imagine the horror and helplessness that Shawn Jennings endured after his brainstem stroke in 1999.
It was the stuff of a Stephen King novel, he says — like being alive in a dead body.
He recounts what it was like, lying in a hospital bed, his personality and intellect intact, yet unable to move a muscle.
He could not call for help with his pain. He could not scratch an itch. He could not move his face to show his discomfort or his fear. He would wait for hours, he said, trying to use mental telepathy to summon a nurse or doctor.
And when one showed up and didn't look into his eyes or provide him with the relief he'd been waiting hours to receive, it was soul-crushing.
There are lessons in this, as well as overwhelming gratitude for his fellow medical practitioners who saved his life.
But this harrowing chapter is how he starts his story that is both instructive and inspiring.
It's a message to practising and aspiring medical professionals about what it's like to be in their care as a patient so utterly dependent and helpless.
He's also determined to answer the question — is there life after a brainstem stroke? — with an emphatic yes.
"My voice is compromised, so if you have trouble understanding what I'm saying, don't worry," Jennings said at a recent talk in Rothesay.
Then he starts at the beginning, some 24 years ago, when he was in a near-collision with another driver that forced him to slam on his brakes and caused him to wrench his neck.
Jennings believes this incident caused damage to a vital artery that wasn't detected right away.
Two weeks later, he found himself overwhelmed by vertigo while sitting in his truck in the parking lot outside his medical clinic. He was so overcome by dizziness, he had to call his wife, who took him to the hospital, where he lost consciousness.
Depression crept in. Darkness, black, loneliness .— Dr. Shawn Jennings
When Jennings woke up, he learned the stroke had damaged his brainstem. That's the part of the brain that controls primitive functions such as sleeping, eating, breathing and heart rate.
Trapped inside a body that he could not move, Jennings retained his personality, his memories and his sense of self.
He was still a loving father and husband, still a lover of nature and, in his mind, still a devoted family physician.
But overnight, at age 45, he had awakened to find his physical powers gone, save for his eyelids, which he could blink once for Yes and twice for No.
"I would try to will the nurse to come," he would later write in his memoir, Locked In Locked Out.
"My heart broke if I waited hours for someone to come and they didn't look at my face or didn't understand my blinking."
He knew he was being kept alive by machines.
A ventilator did his breathing for him and nutrition was delivered through intravenous feeding.
Night was the worst, he said.
For a while, he experienced a kind of auditory hallucination. He heard songs playing over and over in his head — classical orchestration that no one else seemed to detect.
'My own body holding me captive'
"There was music, pain and tubes," Jennings wrote.
"Depression crept in. Darkness, black, loneliness — the frustration of being unable to just get up, of being forced to lie there against my own will — my own body holding me captive."
He could have drowned in thoughts of "Why me, why did this happen?"
Instead, he made a slow journey back to a life that is altered but has meaning, he said.
It began with some recovery in his left hand that made it possible to type.
He started writing his memoir about six months after his stroke.
In its opening pages, readers meet the man that Jennings was on the morning of May 13, 1999.
"I was taking the afternoon off for a golf game," he wrote.
"The smell of new grass was in the air. It was the type of day you waited all winter to feel."
Meeting Jennings now, that spark is still within him.
He is driven to help people understand what can be recovered after catastrophic loss.
Spreading a message
With intensive speech therapy, he regained his ability to talk, and he has used his voice to advocate for the disabled.
He went on to teach and mentor at Dalhousie Medicine New Brunswick.
He took his message on the road — giving presentations at conferences and conventions in Saint John, Fredericton, Halifax, Winnipeg and Boston.
Suddenly waking up and feeling your thumb twitch and move, it's a real joyous thing.— Dr. Shawn Jennings
Locked in Locked out, now in its third printing, is used in the nursing curriculum at the University of New Brunswick Fredericton and Queen's University.
One of the themes he explores is what it's like from the patient's perspective to be fully at the mercy of another human being.
He explains how small gestures have such huge impacts. A cool towel. An encouraging word.
"Those little milestones to a person who is locked in, suddenly waking up and feeling your thumb twitch and move, it's a real joyous thing," Jennings told the CBC. "And my health-care providers were always very positive. They seemed to feel the excitement as I did."
In sickness and in health
The book is dedicated to Jennings's spouse, Jill, "whose love sustained me and lighted the way."
Everyone in the family was deeply affected, she said.
"Twenty-four years ago, we had a kind of idyllic perfect scenario going. We had three healthy children. Shawn had a busy, busy family practice that he utterly loved, going to work every day, and I was a nurse in his office."
Now, it's Jill who makes it possible for Jennings to keep working. She is also determined to keep him connected to the world outside the home.
She gets him out of bed and she gets him dressed.
She is the one who drives the custom van and secures his wheelchair into the lift. She brings his books to his signings.
She was the one to assure him that better days were on the way.
"He would cry and say, 'grandchildren' and I would say, 'Well, yes, we'll probably still have grandchildren,'" Jill said. "Then he'd say, "But I'll never be able to take them in the canoe like I wanted to. And I'll never be able to take them skiing or skating.' And I'd say, 'I know it's going to be tough, but they'll still love you.'
"And it turned out to be better than expected because they grew up with him in a wheelchair. They crawl up on his chair and give him a big hug, and they help him with putting his clothing protector on, and they think it's really funny that he wears a bib when they wear a bib."
Jennings recently finished his fourth book.
Medical Hostages, published just two months ago, is about the leader of a bike gang who escapes custody by feigning illness.
It's his third work of fiction, in addition to The Dove's Eye and A Forgivable Indecision.
Hope is very important. Humour is very important.— Dr. Shawn Jennings
Other achievements include serving as president of the Canadian Association of Physicians with Disabilities and sitting on the Premier's Council on the Status of Disabled Persons.
In 2007, Dr. Jennings was awarded the Dr. Garfield Moffatt Medal by the New Brunswick Medical Society for excellence in patient care, continuing medical education, and community leadership.
When he recently spoke to the CBC, he had also been tapped for another award.
At the Medical Society's 2023 Celebration of Medicine, to be hosted in Fredericton on Friday. Jennings will be among 30 doctors being recognized for their longtime service to their communities.
He appears genuinely mystified as to why anyone would pick up his story now. Jill is also bemused.
"This happened such a long time ago," she said.
But somehow that makes their accomplishments all the more remarkable, that a quarter-century after losing so much, the Jennings are active and engaged in living and life.
"Hope is very important," he said. "Humour is very important.
"It's good to be alive."
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