I’ve had an uneasy relationship with the word “survivor” since a few months after I was diagnosed with cancer. For the first few months I lived in a tunnel of my own present tense fear. I had two lives, a public one that fought to teach and mother as if nothing was happening to me and a private one that fought to deal with my diagnosis and treatments.
I stumbled onto the Cancer Support Center in Homewood, IL after a conversation with my daughter’s school counselor. I stopped by for a visit and my world changed right then and there. For the first time someone asked the right questions and listened in the right way.
“How were you diagnosed?” was the first question. Until that moment I didn’t realize how much I needed to tell that story. And people there listened in a special way. They’d heard these stories before. I wasn’t going to shock them or scare them. I could cry or be angry or terrified. I could just speak what was in my heart.
After that first interview, I started going to the Tuesday evening support group meetings. It was call “Survivors Support Group.” It was the only thing false about my experience with the Center.
I couldn’t think of myself as a survivor. I would wait for about six months before tests would show whether surgeries and treatment had been successful. As far as I was concerned, I was still in line for the lifeboat.
And, when I saw my fellow group members, it was hard to think of some of them as survivors, too. In fact, five of them would die over the next 15 months. Very few folks in the room were NED (no evidence of disease).
It turns out, “survivor” is ascribed to you in the first seconds of breath that you take after your diagnosis. There is no waiting period. If you have cancer and you are alive, the community considers you a “survivor.”
The cancer community, or one part of that community, is obsessed with success stories. People talk about your “year” of cancer, the period from diagnosis through surgeries and treatment, that some early stage breast cancer patients experience. Some even talk about themselves as “cured.”
That is not my community. Or, put differently, these are my neighbors in Cancerville, but I don’t feel connected to them. I feel that the pro-survivor, “year of cancer,” and “I’m cured” group inflict a bit of harm on the rest of the community by erasing their suffering and ignoring their reality.
At one of our fund raising events, the Walk of Hope, we are handed out t-shirts with “Survivor” emblazoned on the back. The first time I participated, I could see one of my Support Group members in a wheel chair, wearing hers, being pushed by family and surrounded by her friends. She was so ill that she couldn’t really interact with others. Her eyes were empty and her body was riddled with the ravages of chemo and surgeries. She died a few weeks later.
It’s hard for me to believe that a Survivor t-shirt was a good fit for her. Yes, she was alive, but she was sliding down that incline, and we all knew what awaited her. But that damned t-shirt seemed to shout, “Shut up! She’s alive. See? Cancer isn’t winning? She’s winning.” And, in the process the shirt hid her away and erased the very basic fact that she was dying.
Most folks with Stage 4 cancers, the metastatic kind that has spread from the original site to other organs, are living with the likelihood of death from cancer. Urging them to fight and celebrating their survivorship misses the point, I think, and it silences them. Most of us, whether we have cancer or not, don’t really want to talk about dying because it scares us.
But, people who are dying need to talk about that experience. They need to talk out loud about hospice and whether dying at home is what they really want. They need to talk about when to stop treatment. They need to sort out the differences between quantity and quality of life issues.
Actually, I don’t really know what dying people need, but I’m pretty confident that we’re not listening to them. I’m pretty sure that the language of “survivor” discourages and silences them.
I will always be indebted to my Survivors Support Group. Without them I don’t know if would have the sense of wellbeing that I have now. But, that name has to go.
On Sunday, the Center will hold a block party for Survivors. I can’t bring myself to go because I keep thinking about R.C, Mary Kay, Stephanie, Tom, Barbara, Valeta, and others. They are not survivors.
Cancerville is full of people affected by cancer, those diagnosed and suffering, those who love them and care for them, and those who lived and died in our midst. I’d rather honor the whole community and get rid of the word “survivor.”
I guess I don’t think that I should be celebrated, since it’s arbitrary that I’m alive. There’s nothing that I’ve done to earn being NED, nothing unique about me. In the roll of the dice, I got an early stage, treatable cancer. At the moment, there is no evidence of it in my body.
I’m grateful for my good fortune, and I make a practice of consciously acknowledging it. I’m alive, and I’m healthy, and I’m grateful. (In fact, I can’t really decide what I think of the term survivor. This blog gives another perspective.)
What I don’t want to do is to let the celebration of my good luck drown out the others in my neighborhood who haven’t been this lucky. I don’t want to ask those who are ill or the families of those who have died to celebrate my arbitrary good health It feels false.
But, I do live in Cancerville, and I do believe that all of us who live here deserve recognition. We need others to know about us, to acknowledge our lives, our suffering, and our deaths. We need to honor those in treatment, those who are healing, those who are dying, those who have been disabled by treatments, those who are depressed and anxious, those who have cared for us, all of us who live here every day….until we don’t.
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