When the hurting won't stop
November 16, 2012 » Calgary
When the hurting won't stop: How chronic physical pain drove a Calgary teen to take his life
by Sharon Kirkey, Postmedia News
November 16, 2012 12:37 PM
CALGARY - Dominic Boivin's black and brown paisley school backpack sits empty in a corner of his bedroom, near the computer chair where the Calgary teen used to play his Xbox.
It's the same backpack his parents watched a police officer carry up their driveway one night last June. Behind the police officer, Dominic's body lay in a medical examiner's van. A citywide search for him was over.
On June 6, 2012, Dominic "the Dominator" Boivin - a once-gifted soccer player and honour student with a lopsided grin and a gentle soul - took his life after four years of struggling against constant, mysterious, body-wide pain.
At its worst, the pain was so severe Dominic could not walk or eat, and could barely speak. His parents fed him liquids through a child's sippy cup.
At its best, the pain was partially blunted by aggressive therapy and a host of drugs ranging from anticonvulsants to antidepressants. One of those drugs would later provide his ultimate escape.
In the end, 18-year-old Dominic Boivin's suicide is a story of a teenager adrift in the medical system, who had lost all faith and hope that doctors could make the hurting stop. It's a story of how day-in, day-out physical suffering consumed not just a young man, but an entire family.
In the weeks before his death, when the pain had begun hammering away with renewed ferocity, Dominic had wondered aloud whether it would be with him forever. He was also aware of the toll his suffering was taking on his family, says his mother, Nathalie Bellavance.
On May 25, Dominic addressed an advisory committee for a school-based, province-wide community mental health program. He had been asked to speak about how someone copes mentally with pain that never ends. He described the months when his body was a virtual prison of pain. His jaw was locked; he could barely move. He spoke about how the only thing that kept him alive - "kept me surviving, kept me breathing, kept me thinking positive" - was his mind.
"It was at that point that I realized how powerful the mind was, how powerful my own mind was," Dominic says in a video shot that day.
Twelve days later, Dominic took his life.
Chronic pain in children is not unknown. Between five and eight per cent of children and youths have unrelenting or recurrent pain so severe it affects their ability to go to school, sleep or function. Often the source is a mystery.
For them, research shows that the transition from child to adult care can be an extraordinarily vulnerable time if there is no co-ordinated care, says Dr. Jennifer Stinson, a nurse practitioner at the chronic pain program at Toronto's Hospital for Sick Children. Yet few programs have formal transition plans. The waits for adult pain clinics can stretch two or three years. Stinson says youths can feel as if they're in limbo. Many struggle with the side effects of drugs that cause mood and personality changes. Many aren't believed, or their symptoms are downplayed, she said. Chronic pain is something older people get, this misguided thinking goes.
Yet Dominic is not alone. It's rare, says Stinson, but she is aware of other young people who have attempted suicide because of persistent pain.
Brown-haired, blue-eyed Dominic Boivin was a "physical tornado" from the moment he was born on April 10, 1994. By 16 months, he was climbing out of his crib. He refused to crawl backward down the stairs on his belly. Instead, he went feet first. His first word was "tomber" - French for "fall."
He began playing soccer at age five. He was a cannonball on the soccer field, so tough his father, Jean Boivin, worried constantly that Dominic would injure himself or another player. His coaches and the parents of his teammates nicknamed him "the Dominator."
Then, at the start of Grade 8, in 2007, Dominic began feeling pain in his right knee. Soon it spread to both knees. He started physiotherapy and massage, but the pain crept upward, into his hip flexors, his lower back, his shoulders and then his neck. "There's something wrong with my body," he told a doctor.
A rheumatologist ruled it arthritis of the ligaments and tendons. But an anti-inflammatory drug couldn't blunt the burning and stinging, nor could high doses of the powerful steroid prednisone. Next, the diagnosis was fibromyalgia, a label often used when doctors can find no other explanation for pain. Desperate, the family tried acupuncture, biofeedback and nutritional supplements.
Then, in the summer of 2009, Dominic's jaw began to hurt. Within weeks, his jaw and mouth became stuck open. Nathalie, a teacher, had to take time off work to look after him, feeding her son smoothies and liquid meal replacements, tilting his head back to keep the fluids from spilling down his chin.
Dominic's body felt as if it were on fire. "Some days, all I would do is lie in bed and wait for my entire body to stop burning, but it never did," he once wrote in a brief autobiography. "I was officially a vegetable. " It was then, he wrote, that he finally realized "how much pain it took to bring a man to his knees."
His older sister, Marie-Pier, remembers watching her brother as he sat immobilized in front of the TV and thinking, "Oh my God, what is happening to him. What the hell is going on?"
"He couldn't talk and his mouth was kind of open … It was like the pain was internal and he wanted to scream and shout and tell us how much pain he was in, but he couldn't. It was like it was all locked inside him."
His weight dropping, Dominic was finally admitted to hospital.
"When I first met him he couldn't speak, he couldn't move and he was mostly in a bed or in a wheelchair," said Dr. Jorge Pinzon, a pediatrician at Alberta Children's Hospital and consultant to the hospital's pediatric complex pain clinic.
Testing ruled out underlying physical causes, such as a brain tumor, MS, stroke or lupus. Pinzon said that, after discussing the case with the specialists involved, doctors felt it was possible that Dominic was struggling with a complex pain condition as well as "conversion-type disorder." The theory is that the physical symptoms are subconsciously being caused by some underlying emotional trauma or psychological distress, without the person being aware of what is happening to him or her.
But a psychiatrist who specializes in fibromyalgia concluded in a written assessment of Dominic that there was nothing in his history to suggest to her that the start of his pain coincided with any "psychosocial stressor."
Gradually, with physiotherapy and other exercises and support offered by the children's hospital pain team, the worst pain began retreating. In late summer, 2010, when Dominic was 16, his care was transferred to an adult pain clinic. "He was walking, he was talking, he was having a regular life, he was in a relationship," Pinzon recalls. Doctors felt the expertise of the adult hospital "may bring some relief to (Dominic) and the family," Pinzon said.
Dominic indeed had shown improvements in his mobility and other symptoms. "We made the connection (with the adult hospital)," Pinzon said. The family doctor was contacted as well to make sure Dominic was being followed, Pinzon said. "When he left our pediatric system, he was functional but still having difficulty with chronic, unexplained complex pain."
It took six months for Dominic to get into the first orientation session at the adult hospital, and another six months before the medical team saw him. While he waited to see the doctors, Dominic attended sessions on how to self-manage pain, set goals and exercise. But meanwhile, his pain wasn't abating. His psychiatrist started him on clonazepam, a muscle relaxant. He would later be warned that, in high doses, clonazepam could stop his breathing.
When Dominic met with the medical team in August 2011, he told the doctors marijuana was the only thing that seemed to be helping, the family says. By then, he had a federal licence to possess it for his pain. The doctors agreed to support his use of pot if he reduced his other medications.
Nathalie says that Dominic met with the medical team only once, and then with a psychologist. Six months later, his care was transferred back to his family doctor. "They said, 'if you need help, phone us'", Nathalie said. "(The family doctor) told Dom, 'stay positive, do your physio.' But what more could she do?"
Doctors at the pain clinic told Postmedia News that it would be inappropriate to comment on a particular patient's care.
But Dr. Chris Spanswick, medical leader of the Calgary Pain Program, said systems are in place to identify patients who need to be seen by the medical team sooner, and that once patients complete the program, "we don't so much as discharge them, we share their care with family doctors, and if the family docs have a problem they can pick up the phone and say, 'What do I do?' "
"No system is perfect," Spanwsick said. "But I guess what I want to get across to you is (that) we do take this very seriously." He said links are being strengthened with the children's service so that children are followed regularly "until we can get them physically into a part of our program."
The clinic's current wait list contains 1,700 names.
Under his family doctor's direction, Dominic started tapering the clonazepam. Slowly the pain increased. He was studying hard to keep up with the few courses he was taking online or in class, but his short-term memory was shot, a side effect of his drugs. "I can't remember anything," he told one of his teachers, Anne Payne. On the days the pain was really strong, Dominic "would just shut down," Payne recalled. It was in the way he moved, she says, the way he struggled to sit down and get up. "He moved like he was 88 years old."
Friends stopped calling. "They had a hard time dealing with him," Jean Boivin said.
Gradually, even the marijuana stopped working. Most nights, he barely slept. Most days, he stayed home from school. Still, Dominic tried to stay positive, his parents said.
Then he felt the pain in his jaw returning.
In medical school, doctors are taught to diagnose and to treat. "We don't know very well how to deal with things that we don't understand," says Jocelyne McKenna, an Ottawa anesthesiologist who is Dominic's aunt.
"The biggest sadness that I have for Dominic is that when he was admitted to hospital, when he was very, very incapacitated and could hardly speak and feed himself, the intensive therapy he got helped him, and he got better.
"But there was only so much of that available to him."
Dominic's closest friend, Alain Mutambala, said pain changed Dominic; it made him more compassionate and sensitive to the suffering of others. The two friends spoke about suicide once. "He told me there were times he thought of it, and he asked me if I ever thought of it," Alain said. But they never discussed it again.
On Nov. 30, 2011, Dominic wrote: "Personally, I am extremely fortunate to this day that my name isn't engraved on a tombstone in a cemetery."
By the end of May 2012, the pain had taken a new hold. Nathalie stayed home from school for three days.
They saw his family doctor. "She talked to him for an hour," Nathalie recalls. "She asked, ‘How are you Dom? How are you mentally? Do you have any black thoughts?' " She detected nothing.
Days before Dominc died, Marie-Pier remembers, her brother suddenly told her, "Marie-Pier, you know I love you, right?" He told her he needed a hug. She wonders now if he was preparing for death.
"I remember all those times when I was in a rush to do something else, and he would wake me in the morning and say, 'Marie-Pier, can you please help me put my socks on?'
"It was such a futile part of my day and it was so frustrating that my brother had to ask for that, it was so humiliating for him."
The Friday night before he died was his high school prom at Ecole Sainte-Marguerite-Bourgeoys. Dominic, who wasn't graduating because he had fallen so far behind, stayed home.
On Sunday night, Nathalie bent and looked into her son's eyes as he sat in his computer chair, ramrod straight because of the pain, playing his Xbox. She stroked his hair and told him that she would stay home the next day if he needed her to.
Dominic reassured her that he would be okay by himself.
On Tuesday, Dominic took a taxi to his physiotherapy appointment, returning home sometime around 3 p.m. He wrote "physio tomorrow 2:45 pm!" on a note and left it on the kitchen counter. Then he took the near-full bottle of clonazepam from a kitchen shelf, as well as a bottle of vodka. He wore dark blue sweatpants and a royal blue Nike hoodie, and carried his backpack. He left his wallet and cellphone behind.
When Nathalie returned home from school shortly after 4 p.m., she called out to her son. There was no answer.
The clonazepam was missing. Her heart started to pound.
His sister's silver Honda Civic was gone too.
Calgary police issued a missing persons report, seeking public assistance in finding an 18-year-old teen "with extremely limited mobility and who walks extremely slowly." Friends began searching the city.
At 11 p.m. that night, a violent thunderstorm hit. Jean drove for hours, searching for his son, until his car stalled in a flooded street. He got out and ran across a field through pounding rain and lightning. "Where's my son?" he remembers thinking, his panic rising. "Oh my God, where is he?"
On Dominic's computer, Nathalie had found a list of websites on how to commit suicide with clonazepam and alcohol.
Alain Mutambala remembers sitting in a car the next day with a friend, wondering where to look for Dominic. Alain had tried to reach Dominic the week before, but Dominic wouldn't answer his calls or text messages. Suddenly, sitting in the car, Alain said he felt Dominic's presence. "I could feel his energy, it was like he was in front of me, it was like he was smiling at me … I had a very strong feeling that it was him saying, ‘everything is OK now.' "
Dominic's body was discovered some time around 6 p.m. that day, June 6. He had driven his sister's car to a small condominium development on a crescent only 200 metres from his home, parking in a spot hidden from the curb by a tree.
Nathalie remembers hearing sirens. Then, at 7:15 p.m., she and Jean watched through the living room window as the police car and van pulled up. The police had Dominic's backpack. They carried his ring and silver cross necklace in a small plastic bag.
Emotionally, "we just lost it," Jean said. "They tried to calm us down but there was no way of calming us down."
Nathalie pleaded with the police to let her see her son's body. They blocked the door. "You don't know how sick he was," she cried. "Is he at peace? Does he look like he's in peace?"
They did see their son one last time - three days later, in the mortuary in a cedar cremation casket. Dominic was dressed in a favourite white shirt and sweat pants. They had dressed their son in death the way he dressed in life, always in sweat pants and never jeans, because it hurt his hips too much to wear jeans.
The grieving parents blame no one. But they say the transition between child and adult care was too long, and that not enough was done to help Dominic get the social or peer support needed to keep him from feeling so isolated and alone. "Why did he take his life? I think there was no hope anymore of getting better," Nathalie says. "I think his first goal was to get rid of the pain. He said, "I cannot do this anymore.' "
Experts in the field say chronic pain in youth cries out for better political and public awareness. What's needed, they say, is increased training for health-care providers in diagnosing and treating children's pain; increased funding to reduce waits, including mental-health services; more research into drugs to better control pain; better transition planning for youths moving to adult centres; and Internet-based programs to help link youths in pain to others for support.
"We don't judge his decision," Nathalie says, as Jean slips his hand over her own. "It's very hard, it's heart-breaking. We're never going to forget him … We're just hoping that we can help another person not make the same choice, and push the medical system to do something."
Their son left them with a story to tell, Jean says, "and a burden to lift off his spirit."
Factbox: Where to go for help
If you are in crisis, go immediately to your nearest emergency department or call 9-1-1.
If you are feeling suicidal or need someone to talk to contact a crisis centre. For a list of crisis centres in your area, go to http://www.suicideprevention.ca/in-crisis-now/find-a-crisis-centre-now.
(Sources: Canadian Alliance on Mental Illness and Mental Health; Canadian Association for Suicide Prevention)
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