Young Inuk finds a new normal after debilitating accident
"She didn’t suffer a brain injury, it’s just her body that doesn’t work anymore."
Malaya Roberts likes Lady Gaga and high-heeled shoes with Goth metal spikes.
She has a doting boyfriend named Vince Briggs whom she met at the mall. She wants to go to college in Ottawa to study aboriginal language and culture.
In many ways, she is a typical 22-year-old: she’s cocky and sometimes makes mistakes.
Mistakes can be overwhelming when they happen, like totalling the car, an unplanned pregnancy.
Other mistakes seem innocent at the time, but change everything. Like swimming in the dark waters of a northern Ontario lake late on a Saturday night — just doing what kids do in small towns, when they’re 19.
Roberts, an Inuk from Kivalliq, dove in head first, hit a shallow spot, and severed her spinal cord at the base of her neck. She floated there, unable to feel her body, yelling to her friends for help. They thought she was kidding around.
Much of what happened next on Aug. 13, 2011 is a blur of ambulances, both land and air, vomiting, panicking, drifting in and out of consciousness.
Then, in the days that followed, frantic phone calls to her parents, who were visiting Scotland. She remembers strangers asking questions, needles, body scans, X-rays, drugs, fear, surgery.
Two-and-a-half years have passed and Roberts has regained some feeling and movement in her arms, enough to text her friends, using an iPhone from her fifth floor room at St. Vincent Hospital, a long-term care facility in downtown Ottawa.
She’s regained her cockiness and sense of humour too. But she is still quadriplegic, which means other than operating her electric wheelchair, which she does with her head, she needs constant help from others.
For a vibrant girl and one-time speed skater who loved to play during blizzards in Iqaluit and walk her dog for hours, vulnerability is hard to take.
But things will change again for Roberts, though perhaps not quickly enough.
She finally got on a waiting list for assisted living and as soon as she reaches the top, she’ll move into an apartment, where she can have some control over what she eats, when she showers, who comes to see her and the level of noise she endures — all the things a hospital can’t offer.
“Nurses don’t listen. They treat me like a child,” said Roberts, during a visit to St. Vincent’s Jan. 24. “I’m 22. I know my own care. They want to do things their way. It’s frustrating.”
There’s no telling when a unit will become available, said her mother, Dominique Wielgosch. But they’re used to waiting.
Roberts was born in Churchill, Man., to a Rankin Inlet woman and adopted by Wielgosch and George Roberts in November 1991.
“I couldn’t have children and I really wanted children,” said Wielgosch. “People knew I wanted a baby and Malaya’s mom was pregnant. She couldn’t afford another child.”
Wielgosch, a teacher in Coral Harbour at the time, was present at Malaya’s birth. Two years later, she adopted a boy from a different Rankin Inlet family and named him Mathew.
Wielgosch spent 18 years in Nunavut —in Qikiqtarjuaq, Coral Harbour and eventually Iqaluit.
She and Malaya’s father split up and she eventually married Lou Budgell, a one-time president of the Federation of Nunavut Teachers.
They left Iqaluit in 2005, when Malaya was 14, and moved to Manitouwadge, a community of about 3,000 people in northern Ontario, about 1,200 km northwest of Ottawa.
But since the accident, Roberts has not been back. She lived in intensive care and then at an extended care facility in Thunder Bay until getting transferred to Ottawa in February 2012.
At first, she lived at a rehabilitation centre in Ottawa, but the program was too difficult for her frail lungs, so she transferred to St. Vincent Hospital four months later. She’s been there ever since.
Most other patients at St. Vincent are elderly, brain-injured, mentally-challenged, or a combination thereof.
“It’s a hell of a place if you’re a young woman,” says Wielgosch. “She didn’t suffer a brain injury. It’s just her body that doesn’t work anymore.”
But after spending the day with Roberts, it’s clear she is not a whiner or a wallower.
She misses walking, for sure. She misses her friends. But mostly she just misses the freedom that comes with mobility.
She has a motorized wheelchair that goes forward when she presses back on the headrest and then stops when she takes the pressure off.
With this, she can leave the hospital and take the bus to the Rideau Centre, which is where she first spied Briggs. She followed him for a while until she summoned the courage to speak to him. He was wearing a dog collar and a trench coat.
“I’m attracted to that,” she says, smiling, “that edgy look. I actually stalked him, waiting for him to take his headphones off.”
They’ve been together a year now, two misfits finding comfort in a soul mate.
“I will never understand what it’s like to endure having a limited mobility,” Briggs says, “and she will never be able to understand my limited emotional understanding of others, but we are accepting of each other’s differences. I’ve struggled to find friends all my life.”
And while Briggs visits daily, and her mother, monthly, bringing gifts and kindnesses, and attending to her polite requests for food, drink, body rearrangement, text correspondence with friends, medication, face-washing, lip balm applications and countless other tedious tasks, her days are repetitious and exasperating.
“Hon? Can you scratch just below my right ear?” Briggs puts down his sketch book and obliges.
She has a debilitating fear of heights now, and being near the edge of something. That’s what happens when your ability to stop yourself from falling suddenly disappears.
“Hon? Can you put me on my back, please?” Briggs goes over to her bed and gently rolls her from her left hip onto her back.
Fluid must be suctioned from her lungs several times daily, which is why she can’t go to college right now without a personal support worker to manage that aspect of her care.
But she and her family are raising money through the Malaya Foundation, to get one for her, and some of the other things she’ll need when she moves out of the hospital — a special bed, for instance, with a hoist mechanism so she can be lifted out and placed into her wheelchair.
They also want to pay for extra physical therapy which is helping, slowly, to restore strength and range of movement in her arms.
They hope this might lead to her performing basic functions in future, such as feeding herself and brushing her teeth.
For someone who yearns to do things her own way, that would be a huge improvement.
If you want to learn more about Malaya Roberts, go to http://www.gofundme.com/5ihy64