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Robyn Levy, author of Most of Me, is photographed in Toronto, Ont. (Kevin Van Paassen/The Globe and Mail)
Robyn Levy, author of Most of Me, is photographed in Toronto, Ont. (Kevin Van Paassen/The Globe and Mail)

Parkinson's then cancer: how humour saved a B.C. artist Add to ...

Death is on the table along with poached salmon and quinoa salad.

Robyn Levy is unafraid to talk about her mortality. It has become her best subject.

In 2008, at the age of 43, the Vancouver-based writer and artist was diagnosed with early onset Parkinson’s disease, and eight months later, with breast cancer, which resulted in a mastectomy. Her new memoir, Most of Me: Surviving my Medical Meltdown, grew out of the funny e-mail updates she started sending to friends in early 2009 after she underwent an oophorectomy as part of her cancer treatment.

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“If you say oophorectomy with a French accent, it sounds very sexy, and not at all like you’re getting your ovaries and fallopian tubes out,” she explains, dressing up her voice with Parisian flair.

Humour was her saviour. “My family and friends were so worried, I didn’t want them to feel that I was really suffering. I wanted to cheer them up a bit.”

In her book, she writes candidly about her “disease portfolio:” her fear, depression, and the dealings with doctors, her teenaged daughter, Naomi, her husband, Bergen, her well-meaning friends and her “plastic imposter,” the breast prosthesis she names Dolores. It is a brave story, not because of the private emotional reality she bares – all memoirs require that. It’s her determined levity in the face of so much suffering that’s heartbreaking and raw.

At one point, she describes an encounter with two acquaintances on her first evening out with her husband following her mastectomy. When he went off to the washroom, the ladies step in for a whispered chat.

They want to know how she is. They had heard about her diagnosis. When was her surgery? Their well-meaning concern is expressed in overly enthusiastic support and compliments about her appearance.

To ward off tears, Ms. Levy decides to play a practical joke. As they watch her husband move toward them across the lobby, she asks the women to do her a favour. “Please don’t mention my mastectomy to Bergen. I haven’t told him yet.” The other women freeze in place, eyes bulging. She keeps a straight face. Ms. Levy imagines what must be racing through their minds. “These precious fleeting seconds of deception fill me with joy – it’s comforting to know that my hoodwinking habit still works as well as it did when I had two tits,” she writes. When her husband joins the group, there’s an awkward silence, and then she bursts out laughing.

Ms. Levy rarely allows herself to be serious, even in person. She sits at the table, professional and forthright, dressed in casual clothes, firing off one-liners like shots across a bow. Still, her struggle is there, just beneath the surface, revealing itself in the hesitation she brings to some questions, the pause she takes sometimes to take a bite of lunch or a sip of water. And it’s there too in the way tears come suddenly or a twitch in her cheek betrays her emotions.

She mentions how four women in a cancer group she attended in Vancouver have died since she started writing the book. It must be hard to live in such a constant context of death.

“Yeah,” she says. Does she see them a lot?

“Dead people?” she retorts suddenly, dabbing away the tears that had sprung to her eyes. “I see a lot of dead people.”

But then she stops. She knows what I mean. “I don’t see other people from the group,” she offers after a beat. She is now three years in remission and undergoes scans every six months. “I don’t think about dying too much,” she says with a brave, wobbly smile.

The tears return. “It’s my Cry Lady,” she explains of her emotional spill, waving her hand helplessly in the air. That’s her name for her weepy persona. “She is a basket case, and she’s not very attractive. She has snot coming out everywhere,” Ms. Levy continues when asked how she thinks of her Cry Lady. “But she’s very good at it,” she says, brightening. “She’s dependable, and a wonderful release.”

We both return to our lunches. It’s an odd thing, meeting a stranger and talking immediately about her breasts, her medical prognosis, the little box of meds that keep her Parkinson’s symptoms under control, the fact that she and her husband, who is 21 years her senior, regularly discuss who’s going to die first. All interviews require an immediate intimacy. But this is different, almost uncomfortable because of her vulnerability. Any question can unintentionally undo her bravery.

“It’s hard to be real without being funny sometimes,” she admits when we talk about her strength. “It’s a natural reflex, a self-defence mechanism. And it’s a habit. It’s a comfortable place,” she says, acknowledging that some people at book readings are unnerved by her persistent jokes about her situation.

But despite her ability to deflect sadness with humour, there are things that get through her armour – like the language of cancer culture. “I would never call it a gift. It is not a gift,” she says with what appears to be verging on anger. “What really bothered me the most was friends or people trying to be helpful at the beginning of the diagnosis, and somehow, the message underneath it all was that you are responsible for your disease, that you were inviting something with your energy... I did not ask to get cancer or Parkinson’s.”

The seriousness of the conversation lasts only so long, however. In an exchange about how breast cancer can be devastating to a woman’s sense of femininity – something she even writes about briefly in her book – she resorts to deploying humour.

“That’s why I got a penis added,” she says as she lifts another forkful of fish elegantly to her mouth.

Follow on Twitter: @Hampsonwrites

 

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