Sometimes my sister forgets that she can’t walk. Or that she can’t stand without help. Like when the curtain went down on the recent Rock of Ages musical and everyone in the Jubilee Auditorium jumped to their feet for an ovation and, naturally, she went to stand, too.
Instead, my sister boomeranged back into her seat. Undefeated, she sat as tall as possible. It wasn’t enough. She clapped with all her heart like the rest of us, but cried with all her soul. My sister’s brain understood the message, but her damaged spinal cord can’t carry out its commands. It’s as though it speaks a different language now and the translation is lost in transmission.
When my sister forgets, it often surprises her family and friends, but it probably shouldn’t. When you’ve used your legs without thinking about it for more than three decades, it takes some adjusting. Some might label her memory lapse denial—or fantasy, as though she can will her prognosis away. For the rest of us, temporarily forgetting means she still has hope. Without hope, none of us would have made it this far.
t’s only been 14 months since my younger sister, Brenda Schultz, was paralyzed in a five-metre fall from a second-floor deck that was under construction. It was dark by the time she arrived at the country home for a visit and a dip in the outdoor hot tub. No one told her the railing had been removed. For reasons that we are still trying to comprehend, when she stepped out of the tub and made her way toward the door, she fell, plunging over the edge of the deck and slamming her back onto several boulders below.
For our family, hearing that the middle child of three was paralyzed and might never walk again was the lightning bolt. The fireball came next.
Because when you are told you can’t walk, what that really means is you can’t run, jump or ski. Not the way you used to, anyway. You can’t just hop on your bike, go for a skate or pop out for a jog. You can’t dance chest to chest. You can’t stand up and give your children a hug so tightly that you melt with the collision of thumping hearts. You can’t crouch down and help when the oldest breaks his ankle.
When you are told you can’t walk, what that really means is you will now go to the washroom differently, experience intimacy strangely and face a constant threat of health complications: urinary tract infections, 24-hour-a-day nerve pain, the looming threat of blood clots, pressure sores—the list is exhaustive. Beyond that, a spinal-cord injury can shave years off your life expectancy. And when you are told you can’t walk, you will need lots of help to navigate an unfamiliar world. Sure, you can go grocery shopping. But imagine pushing a full cart and a wheelchair at the same time.
Some days, those with spinal-cord injuries live in a miraculous world punctuated by love, support and hope, a world where the people in your life find their niche and fill it. Some supporters run errands, walk your dog or simply lend an ear. Everyone in Brenda’s life has found a role to play, including her ex-husband.
While she was hospitalized for three months, expectedly, Brad Schultz moved into Brenda’s home to care for their two children. Unexpectedly, he borrowed a wheelchair from the hospital, strapped down his legs and attempted parenting and running a household while confined to a chair.
For several days he rolled around in it, taking note of everything that was out of reach. Then, he stood and modified the house, making it as accessible as possible. He switched doors around so her chair could squeeze through, moved dishes from high cupboards to bottom drawers and placed towels and toiletries within reach. Some solutions called for more ingenuity. For hard-to-reach items, such as the coffee pot and toaster in the corner of the counter, he glued on magnets. Then, on the end of a broom handle he attached another magnet. We joked that the broom extender gave Brenda Inspector Gadget arms.
Other times, living with a spinal-cord injury is a bleak hellhole, where being trapped inside your body feels like a lonely, wayward descent. Often it’s missing the simple pleasures—spontaneously dancing, for instance—that affect my sister the most. Her son’s hockey games at arenas with poor accessibility are difficult; many times she sits alone along the boards because there’s no lift to the stands where the other hockey parents cheer. The mornings are the worst. “The first thing I see when I open my eyes is the wheelchair, and I am reminded all over again that this is not a dream.”
Then that middle-of-the-night call came, it was as clichéd as Hollywood portrays it. The phone rings, you fumble around bleary-eyed and then listen to the horrifying words slipping through the receiver. You sit up and ask to hear it all again. The words are the same. Incomprehensible. “Deb, it’s your mom. I don’t want to worry you, but I need your help figuring out where your sister would be if STARS picked her up. What hospital would they take her to?”
Oh, God. STARS picked her up. As a former newspaper reporter accustomed to reporting on others’ tragedies, I instantly knew this was very bad news.
My 38-year-old sister is younger than me and acted it for most of our youth. Especially when our parents made me take her along with my much cooler friends. She tattled on our brother and me too much, and borrowed my clothes too often. She spied on me in my teenage years. I found her annoying. She idolized me. We outgrew the bickering in 1998 at the same time she became a mother. From there we forged an enviable sisterhood. As a family, we admired her dedication as an educational assistant for elementary students in Red Deer’s public school system. It was a job she didn’t do for the money. She was a doting, protective and attentive mother. She bonded with fellow hockey parents, volunteered on school council and nurtured her network of friends. These are the same people who stocked her freezer with casseroles, baked banana bread and cleaned her toilets during her three-month hospital stay. And, in fundraiser after fundraiser, they raised thousands of dollars for her.
Mostly, they showered her with hope.
So when she walked laps around her kitchen island earlier this month—with the aid of a walker and leg braces—it wasn’t just Brenda’s small victory. It belonged to all of us.
It was just after 6 a.m. on Sept. 4 by the time my dad and I arrived at the emergency ward of University of Alberta Hospital in Edmonton where Brenda had been airlifted. The nearly three-hour drive from Calgary went by in a flash. It was mostly quiet, except when we cried. Or swore. My mom and my brother were already at Brenda’s side when we arrived, having driven from Red Deer. I will never forget the fear in my mother’s eyes. It matched that of my father’s. Time has replaced their fright with sadness now. It’s a feeling that has lingered for much of the past 14 months. In emergency, Brenda had been alert for long enough to know she couldn’t move from the waist down. She couldn’t feel the pins the nurses poked into her shins, and her legs didn’t react to the brush of a cotton ball, either. Both are simple tests used to see if a patient with a spinal-cord injury can tell the difference between the soft sensation of cotton and the sting of a pinprick. For two weeks they tried the same tests, with little reaction below where her cord was injured. Eventually she asked them to stop. Nothing was changing.
By the time we’d all arrived, she had a smile on her face, or at least a brave facsimile of one. Her face was puffy from the morphine she’d been given for the pain in her head where she struck the rocks and for her broken back. Despite the crushed spinal cord she felt excruciating pain where her vertebrae shattered. It’s a common misunderstanding that people with spinal injuries don’t feel pain. While Brenda can’t feel sensation on the outside, she still feels pain from morning until night, mostly in her legs.
While it was heartbreaking to see her suffering in that hospital bed, I remember that her greenish-blue smudged eye makeup was distracting. She looked a bit like a drag queen. It’s inappropriate to laugh, I told myself. My always put-together sister, who wouldn’t check the mailbox without lip gloss, would be mortified if she could see her blond hair piled in a nest atop her swollen head. Worse, though, was seeing her lean, tanned legs and small feet, lifeless on the stiff flannel hospital blanket.
“I broke my back,” she blurted. “I hurt myself pretty bad.” It was worse than that and she knew it. She wasn’t ready to admit it. Some days we still wonder if she really believes she’s paralyzed.
Her “broken back” was actually four smashed thoracic vertebrae—the interlocking bones protecting the middle section of her spinal cord. This was the least of her worries. We quickly learned that the vertebrae could be rebuilt with metal rods, screws and steady hands. Repairing a broken spinal cord, however, is no simple feat. “It’s like a telephone cord,” a nurse said, explaining the impossibility. “Once you cut or squish or flatten all the wires, the messages can’t get through. Have you ever tried to unflatten a telephone cord? Or tape one back together? It can’t be done.”
Two days after her fall Brenda underwent successful surgery to rebuild her spine. During recovery her doctor delivered her diagnosis: she was an incomplete T12 paraplegic. Incomplete meant that her cord wasn’t severed, just crushed. The bad news: there is no cure.
Everyone in the intensive care unit was so matter-of-fact. Perhaps that’s how they cope. We wondered how medical staff would like to be treated as patients, especially the harsh, older doctor who performed her surgery to repair her crushed vertebrae. “You have kids?” he barked at Brenda, who had tears rolling down her cheeks as he explained what it meant to be paralyzed.
She nodded: two boys, 13 and 11 at the time—polite, sweet, charming young men who were two days from starting another school year. They still hadn’t been told the news.
“Good,” the doctor said curtly, resting his cafeteria coffee on his belly. “You are going to need them to help you get through this. To do things for you.”
After he left, we reminded Brenda to be happy it wasn’t worse, as if that would make it better. “You can still use your arms and breathe on your own. You can still feed yourself, get dressed and maybe you can drive again. It could be worse. You could be dead.”
None of that resonated. This is a gal who has always wondered why bad things happen to good people. “Why should I be glad it’s not worse?” she asked. “Isn’t this bad enough?”
She was right.
Brenda is one of roughly 86,000 Canadians living with a spinal-cord injury. With 4,300 new cases each year, that number is expected to balloon to 121,000 by the year 2030, according to the Rick Hansen Institute. The same organization characterizes spinal cord injury, or SCI, as one of the greatest survivable catastrophes experienced by a human being. To give them an inkling of what it’s like to be paralyzed, Brenda tells people to try this experiment: lay your hand flat on a hard surface. Curl all your fingers underneath your palm, except your ring finger. Leave it straight. Now push down and try to lift your ring finger. It’s impossible. But impossible isn’t a word in Brenda’s vocabulary. Or at least it’s not anymore.
Within two weeks of her fall, Brenda was moved to Foothills Medical Centre in Calgary to recover from surgery and begin a rehabilitation program. She hated every minute of it. There, she would tell anyone who listened: “This wheelchair just isn’t for me. It’s a rental. I am going to walk.” Most of the medical professionals rolled their eyes. Others looked at her with pity. We, her family, believed her for many reasons—mostly because not believing simply felt cruel.
One rehabilitation medicine specialist, however, gave her all the hope she needed to begin her journey to do everything she could to walk again. When Brenda asked physiatrist Dr. Denise Hill whether walking was possible, she was so terrified of the answer that she asked the doctor to write it in her journal. The answer sat for a day before Brenda read what was written. Hill’s three words changed the game: “Guarded, but possible.”
All Brenda heard was “possible.” From then on, anything was possible. It became her mantra. All she needed was a place to practise it. And so began the search to find people who believed in hope, people who believed that paralyzed doesn’t have to mean giving up.
A few days before Brenda was discharged from Unit 58 at Foothills on Dec. 21, she made a phone call that ended in the first tears of joy we’d seen in months. We’d been hearing rumours about a non-profit spinal cord injury and neuro-rehabilitation facility slated to open in Calgary, a place where specially trained staff would use exercise-based therapy to try and restore function to people with spinal-cord injuries. It was being billed as a place where they could have a chance to strive for something more. It sounded magical.
“We don’t make any promises,” the co-founder told Brenda. “But you sound like a perfect candidate for our program.”
Shaking their heads disapprovingly, hospital staff warned Brenda that paying $100 an hour for unproven therapy was risky. “I wouldn’t want you to waste your money and time and not see any results,” one well-meaning doctor admonished.
Synaptic Spinal Cord Injury and Neuro Rehabilitation Center had yet to open in a nondescript office building in Calgary’s Beltline when we visited just before last Christmas. The empty room smelled like paint and there was barely any gym equipment. The sprawling fourth-floor room was littered with light fixtures, electrical boxes and random tools. It hardly looked magical. One wall was finished with black chalkboard paint. Brenda leaned down in her chair, picked up a piece of chalk from a tub on the floor and, in pink, wrote on the clean slate: “Anything is possible.”
Nearly a year later, Brenda’s message is still on the board, along with equally determined phrases from others who have wheeled their chairs through Synaptic’s doors. One of them has already walked out, says co-founder Uyen Nguyen, a physical therapist and acupuncturist. She and one of the clinic’s trainers, chiropractor Natalie Fox, are two of only a handful of practising professionals in Western Canada who have completed the certification program at Project Walk Spinal Cord Injury Recovery Center in California.
After more than 13 years of helping patients with spinal cord injuries begin to recover, Project Walk, although controversial in the medical community, is considered the granddaddy of restorative, exercise-based therapy. There is nothing conventional about the program. Nor is it complicated. The theory is simple: without hope and weight-bearing exercise you won’t recover. If you do nothing but sit in a chair, losing muscle mass and bone density, you will deteriorate; any able-bodied person would experience the same decline.
This sounded promising on paper but Brenda had to see it for herself, so in January, my mom, Brenda, her ex-husband and I visited the headquarters of Project Walk in Carlsbad, Calif. and watched people with horrific spinal injuries re-learning to walk. Some used crutches. Others relied on walkers. For many, their gait wasn’t pretty, but they were vertical. Some had been going to Project Walk for a decade, others only weeks. A father of two from Singapore, who’d snapped his neck in a cycling accident and was diagnosed quadriplegic, couldn’t move a muscle from his shoulders down 10 months ago. Today, he is back at home and working again. He is also learning to skip rope.
No one is skipping at Synaptic. Not yet, anyway. As Nguyen explains, science and research can make educated predictions as to how much a patient with a spinal cord injury will recover. What science and research don’t account for is the strength and will of the human spirit. “We’re not selling fairy dust here,” she says of the non-profit clinic that she believes is the first of its kind in Canada. She adds: “There is no magical solution . . . just a lot of hard work and determination from everyone involved.”
After our first visit nearly a year ago, the gym at Synaptic now looks like any other fitness facility. There are spin bikes for cardio, weight systems for leg presses and exercise balls for balance. One of the differences is a state-of-the-art machine that helps people who haven’t stood in years stand with the help of a harness, and walk along a treadmill. The Therastride gait trainer has primarily been used in academic settings for research or other institutions such as hospitals, and Synaptic plans to use it to complement clients’ programs.
The other notable difference at this gym is the clientele. No one is strutting around, flexing in the mirrors. There are no egos. Sadly, this clientele’s commonality is their struggle. Some are quadriplegics who only want to get their hands to work, so they can escape the indignity of dependence. Some are paraplegics who want to stand, if only to avoid pressure sores. Others have conditions such as Parkinson’s, multiple sclerosis, muscular dystrophy or stroke and seek better muscle control.
The staff has seen some results: According to Nguyen, some patients who could not be upright for more than 30 seconds when they first arrived can now stand for up to 10 minutes. The more severely injured have been able to transfer better, roll over independently or better self-feed, she says.
They will forever celebrate one of their initial successes. “One young boy who could not feel anything below his waist when he first came to us would get his foot caught under his wheelchair without ever realizing it,” she says. “Now, he is fully walking independently and he was even able to skate this summer.”
If I hadn’t seen it with my own eyes I might not have believed it. The young boy, whose family was not ready to speak publicly for this story, played floor hockey with my four-year-old son at the clinic while he was in a wheelchair, his legs thin and still. My son ran circles around him. Weeks later, while my son and I visited the gym, the boy walked in. “Where is your wheelchair?” my son asked. The boy explained that he didn’t need it anymore.
What sets Synaptic’s approach apart from conventional rehabilitation and physical therapy is the belief that the brain and body can relearn to speak to one another again. A staff of 11, which includes physical therapists, chiropractors, kinesiologists and an occupational therapist, focuses on retraining muscle groups to restore function below where a person’s injury occurred. “It is a progressive approach to therapy, but one where the body and brain are given the chance to reconnect,” says Nguyen.
The cost of $100 per hour plus tax also sets it apart. The financial burden is undoubtedly prohibitive for some patients. The therapy is not covered by Alberta Health or by most insurance companies.
So far, Brenda has clocked 360 hours at Synaptic—at a cost of nearly $38,000. Without silent auctions, barbecues, concerts and online fundraising campaigns organized by friends, family and strangers she could never have managed. It wasn’t just grown-ups who helped get her there. Youngsters she met in the classroom initiated bottle drives, too.
“I often wonder where I would be if I didn’t have all these angels in my life,” Brenda muses.
y sister’s end goal is to walk unassisted. Like our family, everyone at Synaptic is rooting for her, but they make no promises. Her team concentrates on repeatedly exercising the muscles that have atrophied since the accident. This has led to improved strength and control in her trunk and legs, but it’s not coming fast enough for Brenda.
“I miss my old life. I enjoyed every minute of my old life,” she says. “This life is exhausting.” Her team at Synaptic reminds her that recovery takes time. The research varies, but the medical community says a spinal cord injury can continue healing for two years or more. For Brenda, the hardest part about trying to walk is not feeling her feet on the floor. Most times she uses a mirror to remind herself they are there.
But Brenda’s drive doesn’t end at the gym. She also works out at home on a stationary bike, swims with a therapist and attends out-patient hospital-based physiotherapy in her home town of Red Deer once a week. Now that her vehicle has been adapted so she can drive with her hands, it’s allowed her to feel more independent. She’s moved into a newly built accessible home with her boys. Her social life is rich.
But the gym in Calgary is her happy place.
It’s where she feels the most successful. There, she forgets she’s injured. Maybe it’s because it’s the one place where people don’t stare and she doesn’t feel different. The staff calls her “fantastically strong” and are in awe of her gains. “We’ve seen people with a similar injury not be able to do one-100th of what she is doing,” says Nguyen.
Given that many with spinal-cord injuries receive only an hour of out-patient therapy a week through public health care, the arrival of such a facility in Southern Alberta is long overdue, says Toby Redfern, program manager of the Canadian Paraplegic Association’s Calgary chapter. Still, few can afford private therapy, like Synaptic. “It’s an elitist opportunity,” he says.
Part of the problem, Redfern adds, is the lack of evidence-based research. The CPA is trying to change that. In July, it launched a nine-month study into exercise-based restorative therapy for quadriplegics—patients with far worse paralysis than Brenda. When it’s complete, it hopes to convince the medical community that these therapies achieve results. “We need to be taken seriously by the medical community and then get some sustainable funding,” says Redfern.
Change is happening. In the spring, Karim Fouad, a rehabilitative medicine researcher at the University of Alberta with a PhD in neuroscience, received $2.1 million in grants to study whether rehabilitation is possible. Fouad says spinal-cord injuries remain a medical mystery. “There is still basic knowledge missing when it comes to rehab. However, one finding that we encounter more and more is that rehab training is an essential part or addition to any pharmacological treatment
approach.” He says there is recent evidence that the brain and nervous system can find new ways to communicate. “Over the last years we found that nerve cells in the spinal cord can actually rewire, and we have some evidence that this can contribute to recovery,” he says, cautioning that the process is limited and dependent on the severity of the injury to the cord.
Will Brenda fully recover? We don’t know. Will she walk unassisted? Only time will tell. However, if she had only listened to conventional medical advice she would never have discovered what the word “possible” felt like. A year ago Brenda’s legs looked like deflated balloons. Their muscle tone is returning and she can clench her buttocks again. There are days when she can crawl forward and back. Some days she can walk back and forth along parallel bars. There has been the odd standup hug. We don’t know how long the gains will last. Maybe, as Nguyen suggests, Brenda and others like her will have to fight for the rest of their lives to stand long enough to dance.
Or not. Brenda doesn’t care about the science or physiology behind the therapy. Nor do we, her family. It doesn’t matter if anyone thinks she is wasting her time. “I know it is possible to tackle this injury when so many professionals gave me no hope at all,” she says. “I’m in a constant battle to win this fight to walk again. I won’t give up. I have come too far.”
By Deborah Tetley, Swerve
© Copyright (c) The Calgary Herald
