‘I just figured I had it. I really did believe it’
Mental illness survivor Linda Chamberlain admits she did not have cancer. But she came by her accomplishments and recognition honestly
Linda Chamberlain does not have cancer. That’s the bad and good news. “When I found out, I felt like killing myself,” she told me over coffee on Wednesday morning. She was dressed head to toe in pink, as usual. Her eyes swam in tears behind pink glasses.
“I let people down. I would never hurt anybody in my life . . . ”
Those people are her peers in the consumer-survivor community — folks like her who have struggled with mental illness and addictions, and who have rightly considered her a hero for many years now. They rallied around her 31⁄ years
2 ago, when she announced she’d been diagnosed with terminal liver and bone cancer. Some feel duped; others worry the news — was it a lie? — will re-erect some of the very damning stereotypes Chamberlain herself has worked to tear down. You can’t trust crazies to tell the truth — that kind of thing.
Let me give you a quick refresher of Chamberlain’s remarkable life. Not long ago, she was a homeless, illiterate schizophrenic who pushed all her belongings in a shopping cart along Kingston Rd. and slept in a garbage bag under a bush. You might have walked around her on the street.
Her life changed when she got her own subsidized apartment with support workers. For the first time in three decades, she says, she was able to focus on getting better. She started to volunteer. She joined her housing agency’s board. She helped start the Dream Team, a group of people like her, who lobby governments to build more supportive housing.
I tracked her down five years ago, after I’d seen a photo of her in an exhibition on poverty at the University of Toronto. She invited me to join her at the Centre for Addiction and Mental Health, where she was a peer support worker. She was playing the bongos on the very floor she’d been a patient on. She’d recently won a CAMH award for her work.
But she was giving up the parttime job because it was making her broke.
Back at her apartment, her paycheques and rent bills laid out the proof: under the antediluvian web of welfare rules, the government was taking half of her paycheque while upping her rent. Welfare policy expert John Stapleton later called this the “Linda Chamberlain rule.” He was part of an expert panel that advised the community and social services ministry to change this, but that never happened. You can see why Chamberlain is a hero. She not only survived, but she fought to help others.
So why did she fabricate the cancer diagnosis?
Chamberlain explains it like this: She was in Montreal and was bleeding from the rectum. She went to a hospital, where a doctor mentioned cancer, she thinks.
Then she visited her nephew in Ajax, who was dying of bone cancer. He was down to 70 pounds. Chamberlain was shedding weight too . . .
“I just figured I had it,” she says. “I really did believe it.”
To you and me, that might seem odd. But to her friend and fellow mental health advocate Pat Capponi, there’s sense here.
“When all your experience in life is crisis, danger and fear — that’s where your mind goes,” Capponi says. “Look at what this woman has been through. We all hear all the time that we (mental health patients) die 25 years before the general population.”
Chamberlain’s friends and supporters asked to accompany her to the doctor, but she adamantly refused. After years of being locked in mental institutions and dismissed by doctors, she doesn’t trust the medical system. She didn’t want treatment, she said.
But after years passed and she was still showing up to events, dressed in pink and not in noticeable decline, questions started to surface. Was her cancer in remission?
Last November, Stapleton found Chamberlain a new doctor who ordered a battery of tests. The results showed she has hepatitis B and an “anal sphincter dysfunction,” which might explain her weight loss.
Her bloodwork shows she once had hepatitis C, but her body “has successfully cleared it,” says Dr. Tara Kiran.
“There is no imminent threat of death.”
We live in lying times. Fibbing has not only become acceptable, it’s expected. So when I saw Chamberlain for the first time in a year — I’d been living in Senegal — my mind went there too. What was she getting out of the charade?
Unlike the young woman who gave birth enroute to Japan and said she didn’t know she was 37 weeks pregnant, Chamberlain never set up a GoFundMe account. Sure, people gave dribbles of cash to her charity and the “Pay It Forward” award Stapleton established in her honour — but Chamberlain doesn’t manage either fund. She’s made no money from them.
She did get some public adulation. Stapleton self-published a scrapbook about Chamberlain’s remarkable life, called Not Anytime Soon!
Filmmaker Norm Lofts produced a documentary about her life too, which aired on CBC last weekend. And there’s now a “Linda Chamberlain nook” down a second-floor wing of a building at CAMH.
But Chamberlain earned all of those things honestly. They might have been expedited by her story of cancer, but she deserves them all.
If there is one thing I can take from this, it’s don’t wait for your friends to get ill to celebrate them. Do that daily.
I have wondered if I faulted you, dear readers. Should I have asked to talk to Chamberlain’s doctor before writing about her cancer? My job as a journalist, after all, is to dig up the truth.
I have written many stories about people dying from cancer during my 18-year career. I have never asked for proof. That would seem a slap in the face, when compassion is due. Chamberlain had told me many unbelievable stories over the years, from being charged with murder to seeing her father die with an axe in his head. All of them have checked out as true. I had no reason not to trust her, and as a rule, I think people with histories of mental illness need allies, not critics.
I don’t understand why Chamberlain made up the story of cancer. I don’t think she does either. When pushed, she admits, “It could have been my mental health.”
But I applaud her courage in correcting it publicly now. And I’m very glad she’s not dying.
The truth is, the world needs as many Linda Chamberlains as it can get.
“I want people to know the truth,” says Chamberlain, who put out a statement about her health on Stapleton’s website this month. “I’m an honest person. I help people.”
Chamberlain’s first public act of not dying is hosting a fundraiser on June 2 for the Diana Capponi Client Education Fund. It’s a new bursary program, honouring Diana Capponi — Pat’s younger sister, who ran a groundbreaking program at CAMH, hiring former patients like herself to work in the hospital.
She was a close friend of Chamberlain’s. She died of cancer last fall.
There is some Shakespearean irony in that.
To buy tickets to the Diana Capponi tribute, which starts at 7 p.m., go here: http://openpolicyontario.com/important-voices/dianacapponi/.
In the spirit of confessions, I made two errors in my Saturday column about the 250-year-old red oak. It is not located in North Etobicoke. It is located just on the other side of the Humber River in North York. And while John Graves Simcoe might indeed have stepped under it, Upper Canada’s first lieutenant-governor was never a lord.