cancer isn’t the best thing that ever happened to me

At the beginning of this cancer-awareness month, I want to encourage a particular kind of cancer awareness: awareness of the way we talk about the disease — especially breast cancer, which has acquired a special status in the world of illness. The things we say about breast cancer have become so generic and so predictable that there are, increasingly, limits to what’s sayable about breast cancer at all, especially by the people who have it.

Last week, I read in a national newspaper the latest of countless personal stories of self-improvement by breast cancer. “Cancer has changed who I am,” says the author. “I now place a higher value on my relationships with family and friends . . . . I have become more adventurous . . . . I’ve refocused my career aspirations . . . .”

I find the story problematic. Not because the account is false — no doubt it’s heartfelt — but because it’s redundant (how many cancer stories have you read that say exactly the same thing?) and unwaveringly self-righteous. In its insistence on the necessity of a positive attitude ( “When you stay positive, you stay powerful”), it’s also coercive. If, as a person with cancer, you violate the code of optimism, or if cancer somehow failed to improve you, you’d better be quiet.

So I thought I’d speak up.

People with a serious illness have stories they tell their friends and family, stories they tell in public and stories they tell their doctors. Rita Charon, director of the narrative medicine program at Columbia University in New York, teaches physicians to listen carefully to patients’ stories, to interpret them and, she says, to “honour” them. The trouble is that, overall, it seems, some stories are more honoured than others.

As an English professor who works on cultural studies of health and medicine, I began, about three years ago, to study publicly told illness narratives. I discovered an often-repeated breast-cancer story that was, in effect, a standard story. Its components and its attitude were almost prescribed (see above): I found a lump; I was scared; I stayed positive and I fought; I recovered; now I am a better person; in some ways, cancer is the best thing that ever happened to me.

“What,” I asked, “do such stories do for us, and what do they do to us? How do they help us answer the difficult question, ‘How shall I be ill?’” Certainly, the standard story promotes certain illness values: one should be strong in the face of illness and fight; one should be positive and optimistic; one should, in the end, learn things, especially about oneself. In 2008, I wrote an essay on the public function of breast-cancer narratives, and it was published in a scholarly journal of language studies.

The essay was well-received, except by two women who wrote to me to say, “If you haven’t had breast cancer, you can’t know what it’s like.” The objection was one I took seriously.

Although I didn’t really believe that you can’t know about something unless you’ve experienced it personally, I was chastened a bit. I had moments of wondering whether, if I were ever unlucky enough to receive a breast-cancer diagnosis, I might go to bed one night as myself and wake up as someone with a sudden taste for pink T-shirts and group athleticism. Well, I’m sad to say that I did receive such a diagnosis -but I am able to report I am still, pretty much, myself. Only now I have a better idea of how the whole narrative/values thing really works.

In the weeks after my diagnosis, many friends and family members showed me extraordinary kindness and grace: some shared personal stories, some delivered food and books; my older sister, at 65, became again my big sister.

But there was a strong element of something else in some of the cards and e-mails I received. Over and over again, I was praised for being strong and positive, courageous and combative. “I know you’re a fighter,” some messages said. But this praise was offered mostly in the absence of evidence that I was really any of those things at all. I was, in those messages, steered away from other ways of being (weak, tired, discouraged …), for these were, implicitly, by contrast, blameworthy. That is, it’s not that I was told directly that I had to be strong, and so on. Rather, I was congratulated for already being those things. My choices for the public presentation of me were, with each of these messages, narrowing.

An unconventional breast-cancer story gets harder and harder, under existing conditions, to tell. Most people don’t want to hear from a breast-cancer patient who is angry — not at the disease itself, but at the terms of the club of which she is suddenly a member. As a cancer patient, I am disturbed by the corporatization of the disease; I believe breast cancer does not ennoble people just by taking up residence in them; I reject a survivalism that seems to blame the breast-cancer dead for not trying hard enough. Like author-critic Barbara Ehrenreich and journalist Wendy Mesley, I can’t endorse a pink-ribbon attitude focused on personal battles and triumphs, while a larger, epidemiological, problem goes correspondingly under-addressed: Why is there so dazzlingly much of this disease in the first place?

In fact, most people don’t want to hear about the most horrible fears of cancer patients either. Of course, they don’t. We are their mothers, their daughters, their sisters and their friends, and they mean to wish us well: literally. No wonder, though, that some of us have internalized the rules for speaking. And we do our crying in the middle of the night, alone or, if we are lucky, with partners who are not afraid of us being afraid.

Mostly what I feel is that cancer threw me high up in the air and tossed me around vigorously. I have been swirled among multiple mammograms, biopsy, MRI, surgery, radiation. And soon, I expect, I will be put down on the ground again — only not exactly in the same place. We, each of us, when we face a diagnosis of serious illness — heart disease, neurodegenerative disease, any cancer — need to get oriented to the new place in which we find ourselves. The stories we might tell of the experience, if we wish to tell a story at all, do need to be honoured, even if they are — especially if they are — the ones no one really expected to hear.

Judy Segal is a professor of English at the University of British Columbia.

Vancouver Sun
Thu Apr 1 2010
Page: A15
Section: Issues & Ideas
Byline: Judy Segal
Column: Judy Segal
Source: Special to the Sun

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