AIMS Writing, bridge-burning, Cancer Treatment, Culture of Cancer, Diary writing, Educating Rita, Ending cancer?, GCE O-Level English, HAWMC 2013 Day One, Health Writing Activist Monthly Challenge, patient empowerment, Pink Ribbon Culture, poetry, Roberto Reveles, Seamus Heaney, secret diaries, Teaching, The Troubles, Themes of childhood, Willy Russell, Women and Careers, Writing is good for your health, Writing prompts
The third annual Health Activist Writer’s Month Challenge begins today, and I’m in. As a disclaimer of sorts, lest I falter on the challenge to write thirty posts in thirty days, let’s consider this the April Fool’s Day post. That way, I’ll always have an out.
So why do I write about my health online? What was it that got me started? I suppose it was the cancer. But it was also growing up in Northern Ireland. Ironic, when I stop to consider the teenage version of myself, slouched over a desk at Antrim Grammar School, twirling her hair and whining with unparalleled ennui to her teachers that there’s simply nothing to write about. Be careful what you wish for. Out came the writing prompts, as they still do, provoking in adolescent students already bored with, well, everything, a reaction like this from my daughter during a recent practice run for the AIMS (Arizona’s Instrument to Measure Standards) Writing test: “Has technology improved life? Write a persuasive essay as to why or why not.”
Admittedly, the rebellious part of me that lives in my daughter, half-hoped that she would turn it in for credit, reminiscent of the impervious student in Willy Russell’s Educating Rita, who, when asked to write an essay discussing how to resolve the staging difficulties inherent in a production of Ibsen’s “Peer Gynt,” writes one sentence, “Do it on the radio.”
When I was my daughter’s age, I too rolled my eyes to the heavens when I opened the examination booklet to find some of these writing prompts. Beyond “What I did for my summer holidays,” I rediscovered hese gems in Section A of my 1979 O Level English exam. As I recall, I chose (b) and the detestable occasion most likely involved some skill I had not mastered in Domestic Science. I have to wonder who in her right mind would have picked (d) “The nearest I have come to committing a crime.”
Bear in mind, we were taking our O-level exams during turbulent times in Northern Ireland, just a few years after the end of Internment and two years before Bobby Sands refused food, thus beginning the Hunger Strike. Hardly a time of nuanced questions and circumspect diplomacy. I remember always being afraid of what went on behind the walls of Belfast’s Castlereagh Interrogation Centre. Eventually, police officers would admit that prisoners held there had been subjected to beatings and sleep deprivation, burned with cigarettes, systematically tortured into giving confessions. As my old friend, Roberto Reveles, once told me, “if you live long enough, eventually, you’ll see everything twice.” When those pictures emerged of a young and grinning United States Army Reserve specialist posing with a pyramid of naked Iraqui prisoners behind her in Abu Ghraib, my mind went back to the Castlereagh Road.
As a young woman, I never had any trouble thinking of things to write in my diary. Unprompted, I filled page after page with stories, some of them true, some embellished. Along with angst-filled poems, bits of social commentary, dried red leaves from maple trees that lined the roads upstate New York on my first trip to America, letters I never sent, and all those things I wished I’d said at the time, there was always plenty of material. A college student, just starting out away from home, I had all the time in the world to carve out an hour to to set down words on a page. But the business of adult living got in my way, and my cherished daily ritual gave way to other routines and responsibilities that turned out to be far less important, costly, and simply not good for me.
Even with a cancer diagnosis, the thing that everyone dreads, I have had to stop and remind myself that my career is but a thin sliver of my life, that my family matters most, that my well-being is my priority. Such words roll easily off the tongue, but unless reflected in daily practice, they ring hollow.
I was diagnosed on 11.11.11. At once, everything changed and nothing changed. I could be contemplating my mortality one minute and paying bills the next, shifting in an instant and imperceptibly, from the philosophical to the pedestrian. That doesn’t happen as much anymore. I am more awake to the fact that all these moments that make up a life, are not of equal weight. Some I want to freeze forever, others I want to forget immediately. But for too long, my priorities were askew.
In a 1992 interview, the late Senator Paul Tsongas reveals, “Pre-cancer, I was one of the pettiest people you’ve ever run into … I would get angry at my wife for leaving the top off the toothpaste. I’d get angry at my kids for the dumbest things. Looking back on it I feel mortified. I was a fool.” Taking stock, in Heading Home, Tsongas explains that it was a letter from an old friend, Arnold Zack, that helped put in perspective the senator’s promising political career:
No one on his deathbed ever said, ‘I wish I had spent more time on my business.
In this same year, he also regretted choosing not to disclose the recurrence of lymphoma five years earlier, and he made a pledge to submit his medical records for review by independent experts should he ever run for office again.
At first, I disclosed my diagnosis to family, friends, and people who turned out to be anything but friends. All I knew about breast cancer was that it got me. It made no sense, because there was no family history, and three clear mammograms. Breast cancer was the thing that happened to other women. Too quickly, among my friends, I was that other woman, “the one who had cancer.” Apparently striking dumb those people who would ordinarily talk the legs off a stool, I ventured online to find the resources I needed to decipher a lexicon that grew only larger as I journeyed along a well-worn path taken by too many before me – detection, diagnosis, surgery, treatment, fatigue, depression, and fear of recurrence. A quick study, the politicization of breast cancer soon dawned on me. Duped, I had fallen for the mythology of breast cancer, with its attendant pink ribbons and platitudes, and I felt angry, sad, and stupid. April’s fool indeed. So I began to write about it, the way I might have done in my secret diary years ago.
If ever you doubt the power of writing to salve your soul, Dr. Cheryl Dellasega at Why Writing is Good For Your Health, suggests asking yourself the following questions:
- What other form of communication allows me to edit until I get it right?
- What other legacy can I create that’s as permanent as the written word?
- Is there anything more soothing than the feel of my fingers flying over the computer keys as if playing a piano concerto with ease?
- Is there any other non-chemical experience that allows me to enter another world as completely as literature?
In this space that writing affords, I have control. I can set down my story against the more mainstream stories of celebrities who have “conquered” cancer or women who “have it all.” I can lean back rather than Lean In. I can light the match rather than not burn the bridge that served only to keep me down and in the dark. In this space, if a visitor leaves a comment that is unkind or untrue or defamatory, I can place it in the trashcan, where it belongs.
At the beginning, I was neither brave nor bold. I felt like I was speaking out of turn if I expressed out loud the indignation and rage I felt towards the disease that would interrupt my daughter’s adolescence. Did I not know my place? After all, even in the face of estimates such as those of the National Breast Cancer Coalition, that by 2030 – when my little girl will be 31 years old – 747,802 women worldwide will die each year from breast cancer, NBCC’s deadline for The End of Cancer is January 1, 2020. Who am I to argue? But it is just seven years away, so I am nervous. Forty years ago, Richard Nixon declared war on cancer, which has been around since the civilizations of Ancient Greece. Still, we seem stuck on the treatment of it. The same regimen of some combination of surgery, chemotherapy, and radiation is still at work, and cancer is still winning. Just ask those who are dying from it, those who have lost loved ones to it. Dare I ask out loud if it is realistic to set a deadline for ending cancer? I am not so sure as I once was, back when I did not pay as much attention to words unsaid. Those are the words that matter, and to remain silent is just not an option for any of us.
In Seamus Heaney’s ”Punishment,” harrowing and haunting, he evokes a young woman who has been shorn, stripped, and killed in a primitive, barbaric act which he juxtaposes with the ‘tarring and feathering’ in the Northern Ireland of his day. In this poem, lies a lesson I apply to myriad aspects of my life, including my health and why I write about it – like those other onlookers, he confesses he would not have spoken out against her punishment. With heartbreaking honesty, he tells the dead woman
My poor scapegoat, I almost love you, but would have cast, I know the stones of silence.