Cancer is a journey: "Words matter, people."

Cancer is a journey: "Words matter, people."

All of us in the community of people whose lives are directly affected by cancer think about and care about the words we use to talk about cancer. These words and metaphors put a frame around our experiences and help us imagine how to live and how to be.

On Tuesday, Mary Tyler Mom, an incredible blogger here at ChicagoNow, posted about the words people use to talk about cancer, about the people who have it, about the people who die because of it.  One sentence from that blog echoes for me, “Words matter, people.” Sometimes the words hurt because they imagine a world that is alien to the world that we are living in. So alien that they seem to cancel out our own experiences. Even when people have good intentions--and we know that people usually do have good intentions--the words can be the catalyst for a downward spiral into the chaos of grief and suffering.

For some of us just saying the word “cancer” is hard. We whisper it or stumble over it. It still hurts when I hear the word, especially when it’s used metaphorically. The other day I heard someone say that an idea had “metastasized.” I have to tell you that I struggled to suppress a gasp. I don’t want to be the person who makes others sanitize their language, who creates the “walking on eggshells” atmosphere in the room. I want to be a “cool person with cancer.” I want to laugh at cancer jokes (yes, there are cancer jokes) and now and again crack one of my own.

I’m not there yet. Maybe I’ll never be there. Maybe “there” isn’t the place to be.

Still, we need words to structure our experiences and it’s very hard to talk about cancer without using metaphors. I’m struggling right now with what to call myself. Am I a “survivor,” a “patient,” a “victim”? I lean towards “a person with cancer” because it is straightforward. But, it’s cumbersome. Do I go to a support group for people with cancer? Or, do I go to a support group for cancer survivors?

I’ll confess that I’m not comfortable with the word “survivor." Part of my resistance stems from its imprecision. At what point do we become “survivors”? Suleika Jaouad’s blog entry on the New York Times evocatively explores this  issue.

We survive events, hurricanes, sinking ships, assassinations, but I wonder if we actually survive processes. We become survivors of a sinking ship after we get to shore. We are not survivors as we wait in line for the lifeboat, only after the ship has sunk and a lifeboat has delivered us to dry land. The event has to end in order for us to have survived it.

I want you to know that this isn’t just nit-picking. Who cares if the term is precise? I suppose I care very deeply about this word because my identity is bound up in it. It takes quite a bit of confidence to describe yourself as a “survivor” of cancer. It’s planting your flag in the stuff of the universe and declaring that you’re on the other side, on dry land. I don’t have that confidence yet, and I’m avoiding declarations under the theory that my reticence will hide me from the universe. It’s harder for the universe to slap me again if it can’t find me.

So, I’m revealing my metaphors aren’t I? The “universe” metaphor is the last vestige of an abandoned religious upbringing. I don’t believe in god, but I still feel that I can be punished.

I believe that the metaphors I choose can empower me and help me to imagine a world in which to live. I am avoiding the word “survivor” at the moment because I’m afraid. I’m not yet up to the courage that it takes to use that word. Having cancer is not a discrete event. It doesn’t happen and, then, with a flourish, end. It keeps happening. It is dynamic.

For me cancer is a journey, and I have to tell you that I really hate to travel. I enjoy being in new places, but getting there sucks. So the cancer part of my life has been especially hard because it is mostly “getting there.” It is moving from crisis to tests to diagnosis to tests to treatments to diagnosis to tests. It is a series of excursions, some of them canceled and some delayed and some just horrible. And “there” is often a shitty little hotel room barely big enough to turn around in with rough sheets on the bed. Still, you have to make it home for awhile.

But I’m not alone on this journey. The fellow travelers make the metaphor work for me. Some of them have traveled this part of the road for a long time and they have guide books and travel diaries and sympathy and encouragement. Knowing them has helped me to embrace the getting there with a bit more gusto.

So, bottom line, I want to second Mary Tyler Mom’s “Words matter, people.” Indeed they do.

Metaphors be with you.

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