Mind & Spirit
Discovering hope in a rehab hospital: Amazing stories of resilience
Mind & Spirit
Discovering hope in a rehab hospital: Amazing stories of resilience
On a tranquil day when everything seemed right with the world, I got a call that changed my life. I was outside in the sunshine when I heard the phone ring in the kitchen. Somebody was leaving a loud and demanding message on the answering machine. I hurried in, gritted my teeth, and hit the "play" button. Then my knees went weak.
The caller was my friend and former colleague Neil MacVicar, a journalist who had worked with words all his life. His speech was guttural and slurred. "Barb, it's Neil," he bellowed, in the struggle to make himself understood. "I've had a major stroke."
The next morning I was on my way to see Neil at Toronto Rehab's University Centre, a slab of dirty bricks and even dirtier windows set back from the corner of University Avenue and Elm Street, near the city's finest hospitals yet somehow apart. As I was standing across the street and staring at the sign high atop its façade – "Help us do everything humanly possible" – it struck me that I had never noticed the place in all the years I had visited loved ones next door at Mount Sinai and Princess Margaret hospitals.
Rehab hospitals: Unglamorous and unknown
It was little wonder. Except for the survivors of catastrophic events, and their friends and families, rehab hospitals are little known to most of us. In fact, if saving lives makes for high drama, the process of putting them back together is far less exciting, unless, like me, you're given a chance to see it firsthand.
Behind the University Centre's grimy walls, every year thousands of men and women get back on their feet, literally and figuratively, after suffering from traumatic brain injuries due to aneurysms, car accidents and strokes. What the place offers – to those whose brains are not so badly injured they can't do the work – is speech, physio and occupational therapy. But it offers something more. Good humour. A caring environment. Hope. And, in Neil's case, a group of disparate patients, 24 at a time, who support one another through weeks of rehabilitation.
Dr. Mark Bayley, medical director of the centre's neuro rehabilitation program and a researcher in the field of brain recovery, says most people think of the University Centre as "a black box where some miracle happens." If ever anyone needed a miracle, it was my friend Neil.
When I first met Neil, in the late 1980s, he was a witty and urbane person, kind and incisive. By last Christmas a minor stroke had left him less vigorous. Still, at 63 he was reading the latest novels, overseeing the painting of his Victorian home and tootling around town with his longtime companion. He was informed and interested in the world. The man I found waiting for me when I came off the elevator on the fifth floor of the rehab centre that first day was hunched in a wheelchair, his face sagging, his hands shaking. It was all I could do not to cry.
The second stroke happened in his doctor's office at the end of February, he managed to tell me. "That was lucky," I said. "Yeah, some luck," he responded ruefully. Saved from death, he was now faced with a recovery that looked almost impossible.
Page 1 of 4 -- Learn the extraordinary resilience of the patients behind the rehab hospital's walls on page 2.
For the next few weeks, I went on a journey of my own as I followed Neil to physiotherapy and talked to the people around him. Every time I came to the centre, I felt more and more at home. Maybe it was the nurses who smiled and nodded at me, or the patients who recognized me and grew to accept me in their midst. Whatever it was, visiting Neil gave me a sense of purpose.
I had lost something, too – a job that had consumed my life – so I had plenty of time. But, more important, I was ripe for learning a lesson that would help me find new hope. The devastation I saw in that place was hellish, but the human spirit was stronger.
The physio part of Neil's therapy took place on the building's ninth floor in a series of crowded rooms and a dingy stairwell. The equipment – stationary bikes and weights, parallel bars and exercise balls – was familiar to me, but the patients looked like no one I had seen at my local hospital the last time I broke a bone. Some of them walked like drunks, their feet too high, stepping into air. Others inched along.
One day I watched as a beautiful young woman, her left arm and leg encased in hard plastic braces, took 10 minutes to shuffle 30 feet down the hall, supported by a therapist on one side and a claw-footed cane on the other. Young, old, Asian, Portuguese, African-Canadian – they just kept coming. Everywhere there was the sharp sound of walker brakes snapping on and off, and the soothing voices of the therapists – "Good. Good. Do you need a rest? Are you tired?"
Working hard to go home
I got tired just watching. There were too many walkers, too many wheelchairs. And no matter where I sat, I had to edge backward trying to find a safe place to put my feet – the feet that enabled me to get up and walk away any time I wanted.
"Don't you get sick of it?" I asked Neil's physiotherapist, Louis Biasin. "Teaching people to walk again?" he asked me incredulously. Like the patients, I kept coming, too. And because I kept coming, I saw them getting better.
The first day I went to physio with Neil, Louis got him out of his wheelchair and creeping down the hall with a stationary walker. Then, he had him climbing stairs, one step at a time with both hands clinging to the handrail. Next, Neil was holding on to the parallel bars, picking up his feet to step over the foam blocks Louis put in his path. I was terrified, but Neil was determined, his face contorted in concentration.
Another patient, a handsome young Asian man, started out almost immobilized, too. Days later, the young fellow lay on a bed, lifting weights. I could hardly believe it. "People are here to get better," Louis said quietly. "They want to go home."
Page 2 of 4 -- Learn how writer Barbara Righton discovered humour in a rehab hospital on page 3.
And there was humour in their predicaments. I spied an old lady sitting on a bed with a peg board in front of her. Hesitantly, she was moving different coloured pieces from the bottom of the board to the top. "Are you trying to make a pattern?" I asked her. "No," she responded curtly. "I am trying to move my arm." We both burst into laughter.
Strokes have no respect for age. The "peg-board lady" was 95, but her friend, who had already gone home, was 28. "The sad part is patients are getting younger and younger," said registered nurse Jane Regan, who has worked with stroke patients for 31 years. "We get people from the age of 18 [and up]," added Bayley.
"Are you two volunteers?"
One afternoon, two good-looking people came into a meeting room cluttered with old computers and a dusty Christmas wreath. Gerrie Fischer was a fit, pretty blond in her mid-50s, dressed in a green sweater that matched her eyes. She was walking, to my untrained eye, perfectly well. Her companion, Alan Kaake, was slightly younger, a well-groomed guy with a limp. "Are you two volunteers?" I asked. Gerrie looked at me for so long, I wondered what was wrong.
It turned out she had had a stroke at the gym after a workout. Alan had survived a stroke in 2007, when he was 48. He recovered enough to go back to work. He was on a modified work program as an assistant manager at a liquor store when he began to feel dizzy after serving an irritating customer. "My first stroke affected the left side," he told me. "The next morning, the second stroke made my right side extremely weak, and I had difficulty trying to move around my apartment."
Although I couldn't tell, Gerrie said she had trouble with her balance. She also spoke in spurts, full paragraphs, and then lost the words altogether, writing answers in a notebook and turning it around so I could read them. "Will they teach you to speak again?" I asked. "I hope," she said. Then she looked down. "I hope I wake up one day and this will all have been a bad dream." She couldn't tell me what she did for a living. "She can't remember," Alan said.
Page 3 of 4 – On page four, learn about the final stages of Neil's journey to full rehabilitation, plus find helpful hospital etiquette for visitors.
Jeanette LeFave is a friend of Alan's, too. She had a stroke while sitting on her couch crocheting. She is thankful for the University Centre. "I certainly wouldn't get this rehabilitation at a general hospital," she said. "But I am not going to fall in love with the place. I want to go home."
The staff want that, too. That's why occupational therapist Andrea Carson teaches stroke survivors to relearn the day-to-day activities most of us take for granted, such as bathing and dressing, grocery shopping and driving a car. "I also talk to my patients about interacting better in society," she said, a place where their unique problems are not well understood.
One Friday morning, when I got off the elevator for my last visit, a bunch of patients were dancing to Sister Sledge's song "We Are Family." All the nurses were gathered around, clapping to the music. Louis had his lanyard of security tags thrown over his back and was dancing with anyone who would get up.
A pretty 20-something woman, who just days before was trying to hide her face behind a veil of thick hair, was wearing a hair band to pull it all back. She was moving to the beat, raising her arms when everyone else did. I wondered what Neil would think. He had already gone home.
Neil has made tremendous progress since his second stroke. After just two months of outpatient rehab at the University Centre, he has graduated from three days a week to two. He uses a walker to get around his downtown Toronto neighbourhood and regularly lunches with friends again.
Hospital etiquette for visitors
The holidays can be an especially difficult time for friends and loved ones who are in a hospital or hospice. Dana Naylor, manager of the cancer program at the Royal Victoria Hospital in Barrie, Ont., offers tips for making the season memorable.
• Every family has their own special traditions during the holiday season. Honouring them will make a loved one's stay in the hospital joyful and less stressful.
• Decorate the person's room using simple ornaments, but check with staff first for any restrictions.
• Arrange for carollers or bring in holiday music.
• Ask staff about activities that have been arranged (e.g., a visit from Santa, carolling or a special dinner) and attend them with your friend or family member.
• A visit from a family pet can brighten someone's day. Ask about hospital policies first.
• If a large number of family members are coming in for a visit, book another room in the hospital. This respects the privacy and needs of other patients.
• Respect visiting hours. They are in place to support the care of patients.
• If you are sick, stay home. Call instead of visiting.
– Donna Danyluk
Page 4 of 4 -- Learn how one woman became compelled to visit an old rehab hospital on page 1.