Some thoughts by Susan Gubar, author of Memoir of a Debulked Woman, on what we call ourselves. While most of the article is about our ‘names’, she also lashes out at the technical terminology of our oncologists and hematologists (unfairly, part of the price we pay for cancer is the requirement to learn a new vocabulary, among other things). Quote:
Mary feels that cancer was a “blip” in her past that no longer defines her. Diane is a survivor, but not of cancer; she is “a survivor of treatments of cancer.”
Patricia and Judy are not survivors, because they are undergoing their first treatments and have no idea how effective they will be. Not a survivor either, Sarah braces herself for the time — not if, but when — the cancer will return. And there is Allison, who, like me, feels put off by the word “survivor”; somehow the term sounds too heroic to claim for ourselves.
In newspaper articles, on TV shows and Web sites, and at social gatherings, many people with cancer define themselves as cancer survivors. The term is meant to be optimistic, suggesting that such people have beaten cancer, defeated the disease. Through a valiant struggle to endure, they have managed to get through the trauma of cancer and emerge on the other side, perhaps sadder but wiser and possibly even better equipped for existence, for they are now attuned to the precious, precarious nature of human life.
While I can only congratulate such people, surely there are others (besides the members of my support group) who cringe at adopting such an identity — and for a number of reasons. Does the celebration of the triumphant cancer survivor cast those who died from the disease in the role of victims who somehow failed to attain the requisite resiliency to overcome it? An American propensity to circulate stories of valiant individuals triumphing over great odds must make people coping with recurrent, chronic or terminal illness feel like duds. And even for those patients with cancers that can be cured, claiming to be a survivor might feel dangerous — like a jinx, a sign of the sort of chutzpah or hubris that could bring about dire reprisals from the powers that be.
Despite all the hype surrounding the “war against cancer,” many cancers remain incurable, and the people coping with them need some other terms to describe their sense of themselves. Approximately 40 percent of the American population will get a form of cancer; half of them (roughly 20 percent) do not survive. There must be (and must have been) quite a few people who have known themselves not to be survivors. What should we call patients up against these numbers? If some of us are not cancer survivors before our dying, are we cancer contenders? Cancer lifers, cancer dealers, cancer mavens, grits? As I eagerly await any and all suggestions, I ponder the various lexicons that mystify or vex people trying to keep a sense of self intact after dire diagnoses and sometimes draconian treatments.
As I have written in What we call ourselves, we often change the metaphor to our particular circumstances and stage in our journey, and I settled with living with cancer as the ‘label’ that best worked for me.