There have been many breakthroughs in treatment and care over the last 25 years, and even more improvements in accessibility. But there’s still a long way to go
On a warm summer night in 1978 , Robb Dunfield and two friends climbed up into a house under construction near Jericho Beach to get a better view of the pillowy tall ships floating in the harbour.
They stepped out onto a balcony where the railing had not yet been built. Instead, there was merely a board tapped into place with a nail at either end.
It gave way quickly and Dunfield, then an athletic 19-year-old with a zest for adventure, plunged 30 feet into the darkness. Down, down he went, crashing into an abyss. In those few moments, his life changed irrevocably.
A church minister who was out walking his dog found him and called an ambulance.
When Dunfield regained consciousness several days later in the hospital, he remembers apologizing to his parents for all the trips they were having to make to his bedside.
In those first days, his life hovered in the balance.
He was under a “do not resuscitate” order. He went into cardiac arrest. That same church minister, who happened to be a friend of his family, gave him the last rites.
Slowly, reality sank in. Having broken his back at the second vertebra from the top of the spinal cord, he would never use his arms or legs again.
At first, he could breathe on his own and had some movement in his shoulder. But within a couple of days, he lost that, too. He was told he likely wouldn’t live beyond another two years.
Thirty-four years later, Dunfield, at 52, sits in a wheelchair, his body completely immobilized from the neck down.
At first, he appears chiselled out of rock. The living room of his elegant home in White Rock is filled with the steady rhythm of his respirator.
But that changes when he starts to speak. The sound of the ventilator fades into the background. He comes to life, injecting a warmth and superb intelligence into the room.
He is a living example of what is possible, proof positive of the indomitable nature of the human spirit. A talented painter, a husband and a father of twin 15-year-old girls, Emma and Sophia, Dunfield has a richer life than many.
The treatment of spinal cord injuries has come a long way since that fateful day in 1978.
Dunfield believes that if his injury occurred today, he would quite likely be breathing on his own and have some use of his arms and hands. He would have been given highly effective drugs to prevent the swelling that robbed him of the functions he initially had retained after the accident.
But he isn’t one to live in a dreamy world of “what ifs” and “why mes?” Instead, he focuses his energies on what he can do, on setting goals and then finding ways to accomplish them.
The air is crisp up on the mountain at Simon Fraser University in Burnaby, carrying the first blush of summer.
The campus bristles with activity as students congregate at tables in a noisy cafeteria to study, exchange notes, check their cellphones and chatter in languages from around the world.
Into this setting wheels 23-year-old Amanda Yan. The only thing that sets her apart is her wheelchair.
Yan is busy these days. Our interview had to be sandwiched between classes and sports.
She is still very much the athlete she was on April 19, 2008, when she and a few friends went snowboarding up at Whistler Blackcomb.
The accident happened about 3 p.m. She was tired, having done many runs that day. But they decided to do just one more. While heading to the lift, the edge of her snowboard got caught on something and she wiped out. Then she started to slide. She couldn’t stop. She was going so fast, she couldn’t see. She flung her arms out to try to stop herself.
Then she felt her head going over an edge. Her board and legs were above her. She started tumbling. She knew she was high up on a mountain and had fallen over a cliff. “I am going to die,” she thought. Then she lost consciousness.
When she came to a stop, the vibration of the cellphone in her chest pocket woke her. Her friends were calling to see if she was okay.
She couldn’t move her legs. “I think I’m paralyzed,” she told them. The rest is a blur. She vaguely remembers being lifted into a helicopter. She was very cold. Three hours later, she woke up at Vancouver General Hospital, surrounded by doctors and family.
She could tell her parents and her boyfriend’s mother had been crying. They tried to hold back the tears in front of her. She tried to reassure them. Everything is going to be okay, she said.
The doctor told her the chances that she would walk again were slim to none.
That night, alone in her hospital bed, the enormity of it hit her like freight train hurtling toward her in the dark. She’d never dance again. If she married, she would be a bride in a wheelchair. So many thoughts tumbled through her mind.
But she’d get through it. She would figure it out. She knew she would.
Dunfield and Yan are just two of the roughly 86,000 people across Canada living in wheelchairs. About half wound up in a chair after suffering a traumatic spinal cord injury.
So much has changed in the years between Dunfield’s and Yan’s injuries.
Bill Barrable, chief executive officer of the Rick Hansen Institute, said about 90 per cent of what is known about spinal cord injuries has been learned in the last 25 years.
While there has not been one big eureka moment in the years since Hansen launched his Man in Motion tour, there have been incremental changes that add up to big improvements.
Because of advances in care, 30 per cent more people who experience a traumatic spinal cord injury are able to walk than was the case 25 years ago. That is due in part to early interventions, including decompression surgery, which relieves pressure on the spinal cord. The first few hours after an injury are critical, and much has been learned about how to mitigate risks – through things as simple as the immediate application of ice at the scene of an injury or the injection of anti-swelling drugs, to sophisticated and timely surgery.
But there is still so much to be done. There is a need to address the secondary complications of paralysis, such as pressure sores, which can be fatal – as demonstrated by the death of actor Christopher Reeve. Pressure sores, said Barrable, are the No. 1 preventable complication in the health care system, and they are extremely expensive to treat.
There also have been major improvements in terms of accessibility and inclusiveness.
Dunfield said when he was injured, about 95 per cent of the city was not accessible. Now, the reverse is true. And because people in wheelchairs have moved out of institutions and into the community, he doesn’t get the stares he used to get.
In terms of reversing paralysis by reconnecting a severed spinal cord, stem cells hold much promise. But given the complexity of the spinal cord, few predict any overnight success.
Bob Steadward, founding president of the International Paralympic Committee and of the Steadward Centre for Personal and Physical Achievement at the University of Alberta, has seen many changes around the world since he began working to improve the lives of people with disabilities 46 years ago.
There have been advances on the prevention side – with laws to stop people from driving at excessive speeds or under the influence of alcohol – but he feels there is still much to do.
“We’ve come a way, but I don’t think we have come a long way,” he said in an interview from Edmonton.
Sure, there have been great improvements in assisted-living devices such as walkers and wheelchairs – for everyday living and for athletes – as well as the development of functional electrical stimulation, which delivers small electrical pulses to paralyzed muscles and can restore or improve function.
There have also been improvements in rehabilitation. Patients are made to get up and move around much sooner, stimulating muscle movement, and they are discharged from hospitals much sooner so they can get on with their lives.
But Steadward sees the need for greater accessibility. There are still many physical and attitudinal barriers blocking people in wheelchairs. There is still much to do.
Near the spot where Dunfield sits in his living room hangs one of his exquisite paintings.
It is of the Queen Charlotte Islands, now Haida Gwaii, where he travelled with Rick Hansen on two fishing expeditions. Getting him there was no small feat. He had to be fork-lifted in and out of planes and helicopters. On the boat, two men had to prevent his ventilator from getting wet as waves washed over him.
But once again, as he has done a number of times in his life, he’d made it to a place that had seemed so far out of reach. He’s learned that it’s okay to rock the boat, to go after what you want even when people tell you it’s impossible. He wanted to get a job, marry and travel. He found ways to do all these things.
But all that seemed so far away when he lay in an intensive-care bed in hospital for six months after his accident. People were yelling and screaming and dying all around him. It made him want to get out of there. So he began by setting small, manageable goals, building upon each success.
Learning to swallow and to talk after his accident were huge successes. Learning to sit up without passing out was another.
Initially, doctors had him highly medicated on painkillers, sleeping pills, and uppers and downers. He was living in a fog. He hated it. So after six months, he decided to go off the medications.
For seven years, he lived in an extended-care hospital with 30 guys to a room and only a curtain for privacy. Most of the others were much older than him. He and a few other young guys in roughly the same medical condition decided they wanted out of there. They encountered so much resistance, they had to meet in secrecy off the grounds to plot their move.
It took them five years, but they finally managed to set up a group home in a newly built co-op near Granville Island. It had never been done before with a group of such profoundly injured, ventilator-dependent people.
“It was like heaven for us,” he recalled. They each had their own room. They hired and fired their staff and dealt with finances and maintenance issues. “It was very revolutionary at the time, but we didn’t know any different. We just thought it was a great place to live.”
People assumed Dunfield would live the rest of his life there, but he knew different. He didn’t want to live forever with a bunch of guys. That’s when Sarah entered the picture. He hired her as a practical nurse at the home.
The two very quickly developed a bond. They realized there was something more to their relationship. At first, Dun-field was a bit wary of the situation because she was only 21, nine years younger than him, and had her life ahead of her.
But they followed their hearts and married. The minister who had found Dunfield on the ground that warm summer night and who had given him the last rites performed the ceremony. They have been happily married for 20 years.
“It doesn’t matter if you have four limbs that work or not. If you can make somebody laugh or smile or be happy, it doesn’t matter.”
After they were married, Dun-field gave a lot of thought to the notion of becoming a dad. For guidance, he reflected on his relationship with his father, whom he lost 25 years ago.
“It was wonderful to kick the soccer ball together or we could go swimming but what I really remember are the times I made him proud, when he was there to protect me. I felt safe that he was in charge, that he cared about my future because he gave me advice on things I was struggling with.”
Dunfield knew he could offer the same love and guidance to children. So against great odds, Sarah became pregnant with twins.
Dunfield developed a closeness with the babies by carrying them one at a time in a sling on the front of his body. They would climb all over him in bed and loved to get rides in his wheelchair. Some dads aren’t close to their kids. He feels close to his.
His life improved in other ways, too. After his accident, he realized how much of his energy and his emotions had been channelled. He needed a new creative outlet. So he took up painting, holding the brush with his mouth. At first, a few small strokes. Then, as he grew as a person, the colours became bolder and the strokes larger.
He has made a handsome living with his paintings and learned to market his art work. It has been used on wine labels, by corporations and in myriad other ways.
He’s also worked as a motivational speaker, in schools and now works for the Rick Hansen Foundation, having developed the ambassador program, where 220 people with disabilities from across Canada tell their stories.
A huge measure of his inspiration has come from Hansen himself, whom he first met in Edmonton on the final leg of his Man in Motion tour.
Dunfield remembers it vividly. Hansen’s body was iced up to deal with the pain. He had put in a full day on the tour and given media interviews. Yet when he met Dunfield in a hotel that evening, Hansen still had a light in his eyes. He was brimming with enthusiasm and gave Dunfield his full attention despite the gruelling day.
Dunfield knew he had discovered in Hansen a very special man.
After her accident, Yan remained fairly upbeat while in hospital and in the three months of rehabilitation at G.F. Strong. How things had progressed since Dunfield’s era. The hard times hit when she was released and moved in with her mother. “Rehab doesn’t really start until you leave rehab, because that’s when you are out in the real world.”
For two years, she basically climbed into her shell and hid from the world. Her injury affected the whole family. “Because I am an only child, my mother and father were very upset.” They tried to hide their sadness from her just as she tried to hide her sadness from them.
Sometimes she set aside evenings to cry by herself. It helped to let it all out.
Gradually, life improved. She started going out with friends again for dinner or games and movie nights, just like any nor-mal young woman would do. That made a big difference.
It mattered, too, that her boyfriend, Manny, has stayed with her throughout. So many spouses and boyfriends leave when their partner becomes paralyzed.
“It hasn’t been easy, but we have made it work,” she said. She hopes he knows how much she loves and appreciates him. She also helped her aunt, who is an accountant, with book-keeping and discovered she enjoys it. Slowly but surely, she was beginning to move in new directions.
Then she decided to go back to school. At first it was hard, seeing all the able-bodied students while she was stuck in a wheelchair. But there were many plusses, including an expanded social life.
The big break came when she took up wheelchair sports last year. Besides finding a place on the provincial basketball team, she does wheelchair track and field and tennis. She loves it.
She tried sit skiing this winter for the first time. She’d been avoiding snow and the mountains since her accident, and found it was great to be back. It’s made all the difference.
She’s also stopped asking why this happened to her. “These are the cards I have been dealt with and I am going to play the best hand that I can.”
She wants to finish school, get a job, get married and have kids, and that white picket fence.
WISHES SHE HAD DONE MORE
Both Dunfield and Yan will tell you that life in a wheelchair is not a bed of roses – it wasn’t 25 years ago and it’s not now.
Although Yan is an incomplete paraplegic, meaning she can move her legs slightly, she doesn’t have control of her bladder and bowels. “I would kill just to be able to go to the washroom.”
She misses using the stairs at SFU and is resentful of able-bodied people who take the elevator with her. What is the matter with these people? Why aren’t they taking the stairs?
She is grateful she managed to do things like the Grouse Grind before her injury. She just wishes she’d done more.
“To compensate, I am just going to try new things,” she said brightly. “I want to show the world that just because I have fallen a hundred feet, I am already back up and I am going to rise to the top … I don’t want pity. I am strong. I can do this.”
In Dunfield’s case, the physical scars are much more pronounced. At times, his body is wracked with pain. He suffers from insomnia, arthritis and muscle spasms. He still tries to avoid taking medication.
Dunfield isn’t bitter or angry. For 33 years, he has lived this way. “It’s my life,” he says simply.
Injury doesn’t change who you are. In fact, it tends to magnify who you are. “If you were a jerk before the injury, you are probably going to be a bigger jerk after,” says Dunfield. “And if you are a strong person, you are going to be even stronger and capable of that much more.”
Over 33 years, he has learned patience. He has learned to see a bigger picture. And he is grateful.
“I feel very blessed to have what I have because I know what it’s like to hit rock bottom. I learned that I was made of a lot and just be grateful. There is always somebody worse off than you.” Amanda Yan, a 23-year-old SFU student, was injured in a snowboarding accident three years ago.
By Yvonne Zacharias, Vancouver Sun