From tragedy to triumph: New biography celebrates Sheila Kussner and Hope & Cope

“Repairing the World” examines Hope & Cope’s breakthrough in supporting cancer patients

For at least three days in early May, a special book sat on Sheila Kussner’s dining-room table, waiting to be opened.

It was a newly published copy of her biography, describing in unprecedented detail how she founded Hope & Cope and became a catalyst in revolutionizing support for people with cancer.

Mrs. Kussner, O.C., Q.C., C.O.M., was grateful to have received it and was eager to dig into it. And yet, there it sat—unread.

Sheila Kussner, O.C., O.Q., C.O.M., at home. (Click on this photo to enlarge it.)

Instead, she continued to concentrate on the fund-raising activities and charitable causes—Hope & Cope, in particular—that have loomed large in her life for more than four decades.

“There simply hasn’t been a moment for anything else,” she explained during an interview in her home, three days after receiving Repairing the World: Sheila Kussner and the Power of Empathy (Barlow Books) by Douglas Hunter.

“I brought it home and put it on my dining-room table, but I have not had five spare minutes to look at it,” Mrs. Kussner said, noting that even at the age of 90, she remains firmly focused on helping those in need.

“I do hope to read it this weekend, though,” she added with a smile.

Despite the many awards bestowed upon her, Mrs. Kussner insists she’s “not in it for the honour,” which is why she initially declined the proposal to have her biography written. “It’s true that I’ve had my moments in the spotlight, but I’ve never really felt it was about me,” she says.

In the end, she agreed to the project in the expectation that word would spread even more widely about Hope & Cope and that the story of its creation might serve as an example to inspire others.

“I’m overwhelmed, really overwhelmed, by this gesture, because I never believed in a million years that a book would be written about my life. I’m not being cute or sweet or naive. I just never imagined this could happen, even after all of the awards and the honours and the accolades.

“But the fact is, helping people, raising funds—that’s where my heart is. It’s something I do because it’s necessary and I enjoy it. Honestly, I don’t need any other recognition.”

Sheila Kussner’s name is superimposed over a giant butterfly (Hope & Cope’s symbol) on the exterior southern wall of Pavilion A, facing Côte-Sainte-Catherine Road near Côte-des-Neiges. The plaque reads: “A special tribute to Sheila Kussner, O.C., Q.C., C.O.M., founder and driving spirit of Hope & Cope and outstanding volunteer.” (Click on this photo to enlarge it.)

Awards and honours

Nevertheless, over the years, the tokens of appreciation have been ample, including (to name only a few) appointments as an Officer of the Order of Canada, Officer of the Order of Quebec, Commander of the Order of Montreal (the city’s highest honour), and Governor Emerita of McGill University, which awarded Mrs. Kussner an LL.D. degree (honoris causa).

The JGH has also presented her with its highest honour, the Distinguished Service Award. And she has received an honourary doctorate from the Faculty of Nursing at the University of Montreal, attesting to her broad influence in health care.

Although Mrs. Kussner has devoted significant effort to raising funds for McGill and other charitable causes, it’s Hope & Cope for which she’s best known.

If the rationale behind Hope & Cope now seems self-evident, it’s because Mrs. Kussner was instrumental in dragging it into the mainstream, despite a certain amount of opposition when the organization was still in its formative stages.

Hope & Cope’s raison d’être is not only to offer cancer patients (and their families) support after diagnosis, during treatment and during recovery, but to make that assistance available through trained volunteers, most of whom are cancer survivors themselves.

During the 1970s, when Mrs. Kussner was seeking allies among physicians, healthcare administrators, academics and others, an antiquated mind-set was still firmly in place. In fact, the word “cancer” was often literally uttered in hushed tones, since a diagnosis was tantamount to a death sentence.

As for the notion of having cancer patients helped by volunteers, as well as clinicians? Outrageous!

Even so, Mrs. Kussner persevered, spurred by memories of the emotional turbulence she endured after losing her left leg to cancer at the age of 14.

Bitter or better?

Today she clearly recalls the heartache of those years, particularly an incident that made a lasting impression on her while she was recovering from the amputation. “I had gone to a party,” she says, “and when I came home, I was very upset, angry at the world. When I saw my mother, I really lashed out at her.

“She said to me, ‘You have a choice, Sheila: You can be bitter or you can be better.’ In those days, people in my situation didn’t have much choice but to be bitter. But my mother helped me see things differently.”

As a teenager, Sheila began visiting other young cancer patients who were facing similarly terrifying prospects. With empathy and compassion, she became a role model for coping with cancer and living a full life despite adversity.

At the launch of the Hope & Cope Wellness Centre in 2007, hundreds of butterflies were released, one of which landed on the pinky finger of Montreal Mayor Gérald Tremblay (second from right). Looking on with delight were (from left) JGH Executive Director Henri Elbaz, Sheila Kussner and philanthropist and businesswoman Joey Adler.

Years later, this potent formula even helped to prolong the life of her husband, philanthropist Marvyn Kussner, who ultimately succumbed to the disease.

These biographical details, plus an abundance of additional personal recollections, are all there in Repairing the World. However, Mr. Hunter has taken the book to the next level by placing those events in the context of their times.

Readers come away with a keener appreciation for what Mrs. Kussner achieved, because the author has carefully explored and explained the evolving medical, social and psychological attitudes to cancer from the 1950s to the first decades of the 21^st century.

“The history of cancer is not just medical or scientific, but cultural, in the sense of people’s attitudes toward it,” says Mr. Hunter, whose previous books have dealt with such wide-ranging subjects as Group of Seven painter A.Y. Jackson, the travels of explorer Henry Hudson, and the cultural phenomenon of the Tim Horton’s chain of coffee and donut shops.

“When Hope & Cope was founded 40 years ago, the environment was much different than it is today,” Mr. Hunter explains. “Hope & Cope came along at just the right time, when cancer began to be survivable because of advances in chemotherapy. I spent a lot of time and interviewed many people to get that larger picture.”

“It became a story of social change as much as Sheila’s key role in that change,” says Suzanne O’Brien, Executive Director of Hope & Cope. “Repairing the World is not the corporate history of Hope & Cope, although much of that information is included. Rather, it’s how Hope & Cope came to fit into the new, emerging model of cancer care.”

Seeing the project with fresh eyes

Early on, what surprised Mr. Hunter most about the project was being approached at all. Living in Port McNicoll, Ontario, he had never heard of Mrs. Kussner or Hope & Cope, was unfamiliar with Montreal’s Jewish community, and had never written extensively about medical science or health care.

At a tribute ceremony in 2014, Sheila Kussner (seated) was applauded at the conclusion of a speech in her honour by Hope & Cope’s Executive Director, Suzanne O’Brien (left).

However, the search committee that had been formed to consider possible authors for the biography saw Mr. Hunter as the most promising candidate.

His ability to conduct in-depth historical research and his painstaking attention to detail were highly appealing to the committee members—Ms. O’Brien, Sal Guerrera (Hope & Cope’s longest serving board member), Myer Bick (retired President and CEO of the JGH Foundation), Abe Fuchs (former Dean of Medicine at McGill University) and Janice Kussner, one of Mrs. Kussner’s daughters.

Mr. Hunter’s lack of familiarity with Mrs. Kussner was actually a mark in his favour, says Ms. O’Brien, since “he brought no preconceived ideas to the project and wasn’t swayed by emotion.”

“The search committee liked the fact that I could come to it with fresh eyes,” Mr. Hunter adds. “They were hoping an outsider would see things that insiders might overlook or not see clearly.”

By the project’s end, Mr. Hunter says, it was clear to him why Mrs. Kussner had earned such love and admiration. “She was a joy to get to know and work with. It’s crazy how much energy she puts into whatever she commits herself to—and she simply won’t take no for an answer.

“There’s the public Sheila, whom people think they know. And then there’s the private Sheila, who has driven in the middle of the night to deliver things to people in need or to help them find a doctor. That’s really remarkable.”

Today, age has forced Mrs. Kussner to take life a little more slowly, but she still maintains a brisk pace in raising funds. Of prime importance, she says, is the need to continue bolstering Hope & Cope’s endowment, which yields the interest that’s essential for the organization’s survival.

Mrs. Kussner is also adamant about keeping the record straight about how much money she has raised in her lifetime. Lately, the sum of $120 million has been bandied about. “No, no, no,” she insists, “it’s nothing like that.”

Then what would be a more accurate figure? “Well, maybe something approaching $100 million. But $120 million? No way.” She pauses to chuckle. “At least, not yet!”