Please Don’t Call Me a Cancer Survivor

dreamstimefree_185760-1“He not being busy born, is busy dying.”
~ Bob Dylan

I’m still thinking about the first Sunday of this month, a day set aside to celebrate cancer survivorship. I imagine many of you did not know that “treasured worldwide celebration of life” has been on the calendar for twenty-six years? I wonder would I have been any the wiser had I not been diagnosed myself. So who is a survivor, and who do I think I am? At best, I am ambivalent.

According to the National Cancer Survivors Day website:

… a ‘survivor’ as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate that it has an active, productive cancer survivor population.
Was I surviving before I discovered the lump myself? Is that how we would describe my living – my life – before it was officially declared “surviving?” Is that the label we would ascribe to it, after pronouncing as cancer, the disease that flourished, undetected for as long as a decade, defying three mammograms, hiding in tissue no one had bothered to advise me was dense? Or is there another word for my pre-diagnosis living? A better word? Had I been a more active and productive member of the population before diagnosis and after surgery or during treatment? Is there something about the Arimidex I take every night at nine o’clock that makes me a survivor, or am I just an obedient patient?

This time last year, I took an interminable trek through the internet, searching for the right word, and encountered a jarring Times of India headline: “National Cancer Survivors’ Day: Gutsy fighters took on cancer, and won.” Took on? Took on Cancer? Won? Those who have been killed by cancer, are they “less gutsy” than the rest of us? Those with metastatic breast cancer, what of them? As a country, we do a great job ignoring them altogether. Is it because they are losers in this breast cancer lottery? Is that what we would call them? Would we?

Of all the words that no longer connote for me what they once did, “survivor” is the one that leaves me entirely flummoxed. As I have mused previously, the diagnosis has forever changed certain words for me – “staging” I no longer immediately associate with the theater; “fog” I am more apt to attach to a state of cognitive loss than Van Morrison’s misty morning fog or the cloud that can obscure parts of Pacific Coast Highway as we head north in the summertime; and, “cure” is no longer the idiomatic “hair of the dog that bit you,” rather a confounding and elusive thing all wrapped up in a pink ribbon. ”Mets” no longer the other New York baseball team, but a tragic abbreviation for metastatic breast cancer from which no one survives yet of all the millions of dollars raised for breast cancer research in this country, only 2% of it is directed to metastatic breast cancer.

Even “sentinel,” which was reserved, until cancer came calling, for a lonely cormorant perched on a post in the shallow waters of sleepy Morro Bay, I now associate with the first node to which cancer cells are most likely to spread from a primary tumor. Until one afternoon at the oncologist’s office, “infusion” had been something done to transform olive oil into a gourmet gift. But because I had turned left instead of right upon leaving, I missed the exit and instead found myself on the threshold of the infusion suite, a room I didn’t even know was there. Feeling as though I had intruded, I fled. But not before I had registered a row of faces of people sicker than I. In one microscopic moment, I made eye contact with a young bald woman and wondered if perhaps she was cold because, as I turned away, I noted a quilt on her lap. I turned away and thought of Shakespeare’s “enter fleeing” stage direction. Ashamed. Guilty.

Ironically, there was a moment last year, in response to a poignant and provocative piece of writing at Nancy’s Point, when I felt compelled to remark that somehow I was beginning to make some kind of order out of my life since cancer. Or my life with cancer. Or my surviving cancer. I wrote that I was learning to make room for it, to make sense of it no less. Well, that was a bit premature, wasn’t it? Cancer makes no sense at all.

So the headline from The Times of India troubled me. I do not feel gutsy. Nor do I feel like a winner. Nor am I comfortable with being described a survivor. What then? I am a cancer patient. I am in treatment. I am aware that my treatment, currently, does not impinge on my life to the extent that it would were the disease more advanced. If it progresses, that is.

A profound sense of guilt accompanies this awareness. Why? It confounds me and reminds me of growing up in Antrim, a small town in Northern Ireland. At a safe distance. Except the times our kitchen window shook because a bomb had exploded somewhere. Or the time when the bomb exploded outside Halls Hotel. Or coming back to her brother’s house in Belfast after a great Saturday night out with Sk’Boo playing at The Errigle Inn in Belfast, to find my friend Ruth’s car had been stolen and set ablaze as a barricade somewhere on the other side of Belfast. Or the time my brother, as a young journalist, was sent to conduct a harrowing interview with the heartbroken grandmother of three little boys who had been murdered

In May the Lord in HIs Mercy be Kind to Belfast, based on his interviews with the people who lived there, Tony Parker makes an unsettling but astute observation that those born and brought up in Northern Ireland have a mutual need to know, from the start, about a person’s background, so they can proceed in the dialogue, the longer relationship, without saying the wrong thing, “the wrong word.” The schools we attended, our last names, the way we pronounce an “H” all became clues to help establish “who we are,” and if we are to be feared. “Derry” or “Londonderry?” “The Troubles,” “the struggle, or “The Irish Question?” “Ulster” or “The Six Counties?” Between the turmoil in the country of my birth and cancer country, I find that myth features prominently, in particular the myth that victims have in some way, brought it upon themselves. Breast cancer? Didn’t you go for mammograms or do your monthly self-exams? Lung cancer? Oh, you must have been a smoker? Skin cancer? Didn’t you wear your sunscreen? It is a curious mix of sympathy and blame that engenders detachment.

The calendar takes on a new significance, too. The people of Northern Ireland could fill a calendar with anniversaries, those of Bloody Sunday, the bombing of Omagh and Enniskillen, Internment, the Twelfth of July. Most of us physically untouched by these, but changed nonetheless. Survived. The images are indelible. Iconic. Father Edward Daly waving a blood-stained handkerchief on a Derry street on Bloody Sunday, the carnage on Market Street in the heart of Omagh, orange sashes, bowler hats, Lambeg drums, and The Guildford Four. While I have personally passed just one “cancer anniversary”, I have already penciled in my two-year appointment in November. In the end, I suppose every day marks an anniversary of something.

On the question of language, there is no easy answer. Within terrorism, within cancer, and the respective wars waged against both, are words and phrases that sanitize and even glamorize the suffering and pain, that hide the horror and heartbreak visited upon ordinary people going about their daily lives.

I first fell upon the words of writer, Damian Gorman, some twenty years ago. I was channel-surfing in my living room in America and stopped on Channel 8 when I heard a voice from home, narrating Devices of Detachment, a “verse film” about the role of ordinary people like me during The Troubles. It has stayed with me for all these years, and resonates deeply through these ruminations on the complexities of cancer, the politics of its lexicon, its races and pink ribbons, the platitudes we use to keep the ugliness and horror of it – the mets – as far away as possible. He describes the bombs, bullets, the “suspect incendiary devices” all too familiar in 1980s Northern Ireland as far less deadly than the “devices of detachment” its people used to distance themselves from the violence. Aware of it, yet so removed.

We are, all of us, very good at “detachment,” aren’t we?

“I’ve come to point the finger
I’m rounding on my own
The decent cagey people
I count myself among
We are like rows of idle hands
We are like lost or mislaid plans
We’re working under cover
We’re making in our homes
Devices of detachment
As dangerous as bombs.”

~ Damian Gorman

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