Cover

WENDY'S STORY

An Edmonton woman’s courageous struggle to reclaim her life after a devastating brain injury

KATHERINE MACKLEM June 10 2002
Cover

WENDY'S STORY

An Edmonton woman’s courageous struggle to reclaim her life after a devastating brain injury

KATHERINE MACKLEM June 10 2002

WENDY'S STORY

Cover

An Edmonton woman’s courageous struggle to reclaim her life after a devastating brain injury

KATHERINE MACKLEM

Wendy Mathewson sits with perfect posture on the edge of her seat, one foot tucked under her chair, the other square to the floor. She is a flautist with the University of Alberta Concert Band, which is performing a lunchtime concert at the Winspear Centre in Edmonton. Waiting to start, she takes some deep, nervous breaths. But once the music begins, she plays with grace and, by the third piece, allows herself to settle back into her chair when she’s not playing, her flute resting across her knees. She even looks to her friends and family in the audience, and smiles brightly. The concert hall, home to the Edmonton Symphony Orchestra, is renowned across North America for its near-perfect acoustics. Wendy raves about the sound quality. “You can hear yourself play!” she says. One piece the band performs is a modern composition called With Quiet Courage, by Larry Daehn, a title that resonates deeply, though coincidentally, with Wendy’s story. Even though she and the band have played magnificendy, later that day she can’t remember the tide. Wendy, who is a cousin of mine, suffered severe brain trauma in a car accident almost 15 years ago. She can’t recall any names of the works she played.

As she turns 42 this week, Wendy still has the same drop-dead-gorgeous smile she had when I knew her in her teens, and her hair,

now helped by the hairdresser, is still the pale cream colour of wheat fields in early spring. Yet she is disabled—a CAT scan of her brain two years ago shows the same black holes that were there following the accident. Those holes can swallow up words or turn the path between thought and expression into a maze. But that doesn’t stop her from living a rich and frill life. One of the most striking things about the longterm impact of brain trauma is that it differs dramatically from one individual to the next. It can range from personality changes to severe physical handicaps to, in Wendy’s case, a slow, tough stmggle with the complicated task of communicating. Most remarkable, perhaps, is that victims of a brain injury come back at all. If the accident can be compared to a brutally sudden and steep plummet, then Wendy has since done the equivalent of climbing Mount Everest.

On Nov. 30,1987, Wendy and her boyfriend, Tom, were heading home on highway 16 west of Edmonton in Wendy’s hatchback. It was shortly after 9 at night and the weather was clear; the road, a divided, fourlane highway, dry. Earlier in the day, they’d picked up frozen turkeys from a Hutterite community for their families for Christmas. As they crested a hill, Tom, who was driving, saw a car stopped on the shoulder. It had hit a deer, which lay across the left lane. Slowing, Tom avoided the animal. He pulled over ahead of the parked vehicle and backed up along the shoulder, intending to help drag the deer off the highway. The next vehicle over the hill was a Camaro travelling through the dark at 90-100 km an hour. It rammed into the dead animal, which acted like a ramp, sending the car flying into the back ofWendy’s little Nissan and driving it 20 metres forward, trapping the couple in a mass of twisted metal.

Ambulances arrived within minutes. Wendy and Tom were both knocked out. Tom recovered within a few days. No one knows for sure, but it’s likely a turkey crashed into Wendy’s head. One was found at her feet on the car floor. The left side of her skull was smashed. The ambulance attendants suspected a broken neck, but didn’t notice the head injury, probably because Wendy had lots of hair. She plunged into a coma that would last six weeks.

The damage was extensive. A CAT scan of her brain showed dark areas on the left side. In a hospital corridor, a doctor told her

parents, Mufty and Bill, the most seriously damaged areas controlled speech, memory and comprehension. But, he added, she had youth on her side. The hospital records reported, in their detached, clinical prose: “Patient admitted to Neuro ICU with diagnosis of depressed skull fracture.” She was “bagged@ 100%,” which means a respiratory technician was methodically and rhythmically squeezing a rubber sac to blow 100 per cent oxygen into her lungs— breathing for her. Mufty and Bill were overwhelmed by her total unresponsiveness, her swollen, bruised eyes, the machinery that kept her alive, the cruel label, “brain damage.” Mufty wrote in her journal, “On December 1, the world stopped for us. Sorrow, sorrow, sorrow, sorrow, sorrow. Wendy lies, being breathed for, her beautiful hair under a bandage, her skull crashed in.”

As children, Wendy and I had limited contact, as she grew up in Alberta and I in Quebec. But when our families did get together, she and I clicked. Maybe it’s because she has three brothers and I am bracketed by two, so even though I had two younger sisters, we were the lone, older girls in a gang of boys. The first time we really got to know each other was in 1968, when my family went west for a camping trip in the Rockies. We started out in Calgary, where Wendy’s family was living. Pretending to be as Western as real cowboys, with hats all around and string ties for the boys, my family joined hers in loud and joyous hooting and hollering at the Stampede (and just about everywhere else). In her backyard, Wendy and I, then 8 and 10 and both in love with horses, constructed a jumping course, which we ran through over and over, making it tougher as we’d go.

Some years later, and so much more grown up, Wendy, having just celebrated her 16th birthday, and I, 18, drove from her home in Edmonton to Lake Louise, where I had a summer job. She has a vivid memory of driving with me through a rainstorm, its torrents so thick we were forced to stop under an overpass. I remember that storm, too, and laughing uproariously with her, two teenage girls on a road trip.

Wendy bunked for a while in my room in the staff residence at Lake Louise, pretending to be just another one of the hotel’s employees. Athletic and attractive, she fit in. Within days, she met more people than I had in the month or so prior. We

were breaking all the rules, of course—she ate in the cafeteria, drank in the pub—but no mind. Too bad, though, she was too young to be offered a job.

The accident happened 11 years later, when Wendy was 27. She’d graduated from university, and had worked as a recreational therapist in a seniors’ residence. She’d been a ski instructor and had tried surveying. At the time of the accident, she and Tom were living together in a small house on a lake outside Edmonton. He worked as a guide at a hunting camp; she, as a wrangler and camp cook. She’d also just launched her own business, called Uneek Experience, where she took groups on adventures such as camping trips, or wilderness walks. Her first trip had been that fall, to see the spawning of the salmon on B.C.’s Adam’s River.

Right from the start, Wendy’s parents, brothers and close friends take the firm position that they will be positive about her recovery. Friends tie red ribbons in branches of the trees near Mufty and Bill’s home, so the family will look up, instead of down, when they go outside. They reject all negative prognoses, of which there are many, especially the ones that employ the word “never,” as in, “Wendy will never be able

to ..While co-operating with her medical doctors, they try alternative approaches to healing: visualizations, aromatherapy and later, when Wendy is mobile, acupuncture, a Chinese healer. A friend of Wendy’s who has studied alternative medicine suggests that a blue ribbon would counteract the swelling of Wendy’s head, and a yellow one would help her heart. Mufty pins them on, a delicate blue bow on the white bandage circling her head, and a bold and cheery canary yellow one on her hospital gown.

The end of a coma can be a difficult moment to pinpoint. Patients emerge slowly, bit by bit, particularly if the trauma has been severe. For Wendy, it’s no different. On the telephone answering machine at her parents’ home, her family records messages every day about her progress:

Tuesday, Dec. 16: Wendy is holding her own. She is having her tracheotomy tube blocked at intervals so that she can breathe and cough out her mouth. She is still in a coma, which is obviously a safe place for her to be.

Thursday, Dec. 18: Wendy seems to be looking at people and is more responsive.

Saturday, Dec. 20: A big miracle occurred today. Her right leg has been moving through fill range, toes and all.

Wednesday, Dec. 24: We wheeled her

about in a chair. She is still in a coma but we believe she has milliseconds of awareness.

Thursday, Dec. 25: Merry Christmas. Wendy gave us a gift by moving her right arm at the elbow today. She is still in a coma but improving daily. We hope Santa has been as good to you as he was to us.

That year is the first Christmas at the Mathewson’s family home that they don’t hang their stockings. Three days after the 25th, Wendy smiles, sending waves of encouragement out to friends and family. Still in a light coma, Wendy now opens her eyes, although she just stares, unseeing. She moves as if she is distraught, and is often tied into the bed. She rubs her scar, her nose, her left eye, with her left hand. Her right hand lies limp and useless. She can’t swallow or gag.

Two weeks later, though, on Jan. 7, 1988, she does swallow some ice cream, offered to her by Mufty. In her journal, Mufty writes: “My daughter is eating again! Satisfaction, just like feeding the babies.”

By the end of January, she is out of the coma, and out of the hospital, thanks to a nurses’ strike. She has a plastic plate the size

of a saucer in her head, replacing her skull on the left side. She’s lost most of her memories, she can’t concentrate and is often confused and disoriented. But she can walk again, she can even swim, and has begun to speak a handful of words: “hi,” “yes,” “sorry,” “thanks a lot,” “bye.” She communicates with gestures.

Following the strike, Wendy is back in the hospital for three months, in rehab, where she follows an intensive physiotherapy routine and takes speech lessons. And then, five months after the accident, still prone to seizures, still unable to care for herself on her own, Wendy is discharged.

In Canada, more than 50,000 people are disabled by brain injuries every year—about 20 per cent of them in the moderate to severe category. It’s a new phenomenon, because in the past, people suffering extreme trauma to the head did not survive. Now they do, and that raises a moral dilemma. Medical science has leap-frogged far ahead of society’s ability to care for people with disabilities. Once a patient is physically stable, he or she is sent home and it’s only

then that the long-term impact of a brain injury begins to become apparent. Some people have lost the basics: what to eat, how to dress, where to avoid walking, such as the middle of the road. Many spiral downward, unable to cope with the world at large, or with the suddenly new fact that they are disabled, or both. Depression, even suicide attempts, are distressingly common. Families fall apart. Marriages can’t survive. The severity and kinds of problems differ dramatically from one individual to the next, but almost invariably, recovery is a slow, tedious process. “I call it the marathon,” says Mufty, “for which you have no training, that you never wanted to be in.” Says Bill, “It’s perpetual.”

All of the above was true for Wendy. Ten months following the accident, she and Tom were married in a simple, touching ceremony in a park alongside the North Saskachewan River. But the marriage didn’t last. Wendy descended to a very dark zone, and lashed out. Tom did everything he could to take care of her. But she was despondent, bitter, unbearable, and after about a year, Tom left. Mufty took over as her primary caregiver. Wendy, who has known how to hunt practically since she was a child, threatened to shoot herself. Almost two years after the accident, she was in a raging battle one day with her mother. “I should have died,” she cried. Mufty shouted back: “The bad news is you didn’t.” The raging halted, and Wendy laughed. They both laughed and cried.

At about this time, Wendy travelled east, and visited me in my home in Montreal. The trip lightened her despondency and she was happier, although still unsettled. Fier language was very limited, and communication was difficult. Still, we clicked again, and together, we made meals, played with my children and threw a dinner party. The city was preoccupied by the news story of Chantal Daigle, a young pregnant woman whose then-boyfriend Jean-Guy Tremblay had gone to the Supreme Court of Canada to block her getting an abortion. (Eventually, without waiting for a ruling, she fled to the U.S., where she went ahead with the procedure.) Walking with me along Mount Royal Avenue, Wendy pointed at newspapers displayed at a corner store and said, “big.” When I started to talk about the story, I saw she understood. It was then that I began to realize there was a real disconnect between what she could ex-

press and what she comprehended. And that was what she raged about. That disconnect, and the cruel and arbitrary injustice of having her life completely derailed.

There were days, perhaps many in the early going, when Mufty thought it would have been better if Wendy had died. She doesn’t believe that anymore, thank goodness.

The brain is divided into six main parts, and each carries out specific functions. The brain stem, contained deep within the brain, is concerned with breathing, swallowing and sleep. The frontal lobe, behind the forehead, covers what are called the executive functions—social behaviour, personality and organization. For most right-handed people, like Wendy, the left temporal lobe, above the ear, controls speech and stores memories. The right temporal lobe controls non-verbal memories, such as music and drawings. (For lefties, it’s more complex: the same functions may be controlled by the left, right or both temporal lobes.) At the top and back

of the head is the parietal lobe, the area that identifies objects and words, and behind it at the very back of the head is the occipital lobe, which manages vision. For Wendy, the trauma to her brain was particularly acute on the left side, where the skull had fractured. On the CAT scan, damage was clearly visible to the left temporal lobe, but the right temporal lobe, the parietal lobe, and the brain stem also suffered.

In the case of trauma, the place where the brain is hit is called the coup. If the coup is hard enough—and it doesn’t take much, as the brain is made of soft tissue—there is what’s called the contra-coup, or a secondary impact, as the brain keeps moving and smashes into the inside of the skull opposite the first coup. Bruising and hemorrhage can result from either coup. The other form of damage that can occur is the rupture or stretching of delicate long nerve fibres, called axons, which transport information from one region of the brain to another. If there is diffuse axonal injury, as it’s called, that information transfer is interrupted. When a patient like Wendy is in a coma, the

connections in the brain go dormant. “The best way to imagine it is as a short circuit of a11 the functions of the brain,” says Dr. Alain Ptito, a neuro-psychologist at the Montreal Neurological Institute.

Scientists are beginning to believe that a damaged brain may do some repair work on itself, but this is a new thought. Still, even if there is regeneration, says Ptito, that doesn’t mean there is recovery of function. Scientists are also beginning to speculate that when one area has been damaged, other areas may be recruited to perform certain tasks. Even so, the brain, unlike other parts of the body, doesn’t fully recover after an injury. The damage has been done—and it has a profound impact on the individual’s life.

I stayed with Wendy in Edmonton this spring. Contrary to the experts’ expectations, she lives in her own home, with her

dog, Jaz, and a cat called Snowball, even though it’s not all white. Few predicted she’d be hosting a cousin, in her own home, with coffee perking each morning. She has a boyfriend who’s not quite live-in, but he’s at her place a lot. Her abode is a cheery and messy three-bedroom bungalow purchased with money she is receiving after a gruelling, five-year legal battle with insurance companies.

Each day I spend with her is a whirlwind of activity. She helps disabled children ride horses at a farm called Little Bits. She visits elderly patients and works with the recreational therapist at the Youville Home in St. Albert, just outside Edmonton. Her language skills have improved immensely and she has an incredible knack for making herself understood, even when she can’t find the word she is looking for. She answers the phone once a week at the Northern Alberta Brain Injury Society. She keeps

in touch with friends, old and new. She also helps out others who have suffered a brain injury, often simply by dropping in for a visit or taking them out for a meal.

Wendy has played flute with the university’s concert band for four years, and continues to study the instrument, as she did before the accident. She’s just begun taking piano lessons. And she also has her own work—an ongoing struggle with language and, in particular, the written word.

Terry Lineker, a retired teacher, is sitting with Wendy at his kitchen table. A few years ago, she volunteered at the school where he taught and she’s hired him to tutor her. They are working on identifying long and short vowel sounds. Some of the sentences are nonsensical, as in, “Whales from the ocean are small flat snakes.” In addition to reading them aloud and noting the “ays” and the “aahs,” she must mark them true or false. She is composed, but she’s beginning to get antsy. This is a frustrating exercise. She has been working like this, in speech therapy classes, relearning centres and rehabilitation programs, for years. It’s hard work. “Trying to remember it all is difficult,” she says to Lineker, and quizzes him on whether or not the level they are at—it’s Grade 5—is the right one. “The pronunciation is getting so tough for you,” he tells her, “that by the time you get to the end of the sentence, you’ve forgotten the first part.” “Right,” she declares, and tries again. Lineker guides her along and reminds her she’s moved up three levels since they began working together last October.

Wendy’s disability is difficult to describe, partly because she’s good at masking it and partly because I don’t really see it. Over the years, we’ve gotten together at family events, like weddings, or when she’s come east, or I’ve gone west, and each time there’s been a dramatic improvement in her ability to communicate. That’s what I notice. But I know she speaks more hesitantly than most and needs people to slow down for her. Often, words get lost, waylaid somewhere in her brain’s dark spots. The same can happen when her sentences begin to ramble, and at midthought, she’s not sure where she began. She has difficulty with names and titles, so conversations with her can sometimes be like a game of charades—“the man’s name, his name starts with a ‘G’,” she says. But it doesn’t matter. Wendy has a way about her that, remarkably, helps her overcome this disability and lets her connect

with people. Like an extrovert learning a new language, she seems fearless about making a mistake.

Still, it’s not always obvious to the casual observer that there is a lot going on, on the inside. There’s a stigma attached to mental problems, be they due to damage to the brain or mental illness or developmental issues. People sometimes shy away, or worse, from Wendy, and others like her. One evening, we are in a taxi and Wendy gives directions to the driver. He has difficulty understanding, as her voice, which is soft and low, is sometimes slurred, especially at the end of the day. “You see, he thinks I’m drunk,” she says. “I’m used to it, but I hate it.”

William Street, the university concert band’s conductor who’s known Wendy for the four years she’s been a member, compares her with younger musicians in his ensemble. “She gets the double entendres,” he says following the performance at the Winspear, “that often go over the head of everyone else.” Ironically, Wendy, stand-

ing with us, understands, although she has trouble with the words. “I like that word,” she says of double entendre, but she can’t repeat it. It’s already disappeared. But she doesn’t give up; she wants to hear it again and try again to say it. There’s an openness and friendliness that pulls people to her.

That’s what happened to Drew Makinen. Wendy spotted him as she entered a jazz club in Edmonton. She liked the way he looked, she says, and because he was alone, she asked if she could join him. Says Drew, “There was this gorgeous blonde with a big smile coming towards me. I couldn’t believe my luck.” They began to date. Together now for almost three years, they’re a happy couple. Drew, a doctor who’d been married twice before, thinks Wendy is less inhibited than most due to her brain injury. But then, he didn’t know her before the accident—she’s always been very outgoing.

We are driving across town—Wendy is the driver, by the way, and she’s behind the wheel of her honking big SUV—and I ask her what it was like to be in a coma. “I felt

like I was asleep,” she says. She talks about how afterwards she really didn’t know what had happened to her. “That’s why I was so sad—that was a hard place to be,” she says. Like a young adult, she’s now at the stage where she’s trying to figure out what she will do for the rest of her life. She wants to work and longs to contribute more to the world around her. She’d like to make money. She knows that working can be a boost to self-esteem, but has trouble expressing this thought. Talking about herself, she says, “You’re the one that has to believe in yourself. I’d like to feel like you’re important. That’s what I’m always trying; to make yourself feel useful.”

About halfway through my week in Edmonton, I ask myself whether Wendy’s story is a tragic tale or a success story. Here is a woman whose life—so full of promise and potential—was halted in a split second, so rudely and painfully. She was generous, vibrant, smart and beautiful—a true and natural winner. Today, a decade and a half later, she is disabled. And, she is generous, vibrant, smart and beautiful; a gem of a person and a natural winner. Wendy’s story, I realize, is a story of triumph. d]