"Madame, bear in mind That princes govern all things--save the wind." -Victor Hugo, The Infanta's Rose

Wednesday, March 29, 2006

A writer, not a survivor

Forward: As someone with an illness that may yet prematurely cut short my life, I was very moved by the following "My Turn" article by Donna Trussell of Kansas City MO, which appeared in the February 20, 2006 issue of Newsweek magazine. Ms. Trussell suffers from ovarian cancer, and the knowledge that the disease could take her at any time has reignited the passion of writing that had previously been a large part of her life. Although I don't really consider myself a "writer" -- my meager ramblings are much too insignificant to deserve this title of honor -- I can nevertheless relate to her desire to find meaning in her life. The urge to leave some kind of legacy, some tangible proof of the fact that you were "here" and made a difference in the world (even if only slightly), is a basic human need no matter what one's situation in life. One of the reasons I started this blog six months ago was my desire to create a semi-permanent "body of work" expressing my thoughts and emotions as I progressed through this journey into the medical wilderness. I wrote then that my disease did not define me as a person, that it was only one part of what I wanted to write about, and since then I have indeed received much enjoyment and satisfaction in pecking out these posts. (I hope, as a side benefit, that at least some of you have occasionally found them entertaining as well.) So, this is why I feel a special kinship with Donna when she says:

"Remember Me as a Writer, Not a Survivor"

by Donna Trussell

My Oncologist's nurse found out I was a writer. "You must keep a journal!" she said. "I have nothing to say on this subject. I have no comment."

"But it could help other women."

"I don't care about them," I said.

That was true enough in the first few months after I discovered I had ovarian cancer, but what I didn't say was that writing had long ago lost its glow. I often found myself remem­bering Marcel Duchamp's last painting, "Tu m'" ("You Bore Me"). Even my work as a film critic for the local alternative paper suffered. I was often tempted to write, "Go see it and decide for yourself."

If typing, revising and mailing literary manuscripts was tedious before, it seemed absurd now. Statistics gave me a 30 percent chance of liv­ing five years.

Breast cancer's five-year survival rate is more than 80 percent, so it should not have surprised me when I thumbed through a list of local support groups and found plenty for breast and none for ovarian. Then it occurred to me: of course, they're all dead!

Not that death was a stranger. My poems tended toward death, death, death, pet death, death, sex, love, death.

Still, I was unprepared for just how unprepared I was to face my diagnosis. I would say it hit me like a train except that would describe the violence and not the despair, which was more like the embrace of a frozen corpse.

Ovarian cancer recurs frequently, and I could not shake the belief that no matter how well I'd done so far, I would not live long. Hoping for an edge, I asked the doctor about my cell type.

"Clear cell," she said.

"How does that affect my prognosis?"

"It doesn't," she said.

I soon learned she was a voice in the wilderness. Every researcher on the plan­et, it seemed, thought clear cell the worst ovarian malignancy.

Panicked, I found an online group of "ovca sisters" and asked if they'd heard any good news about clear cell. In a word: nope. But they were glad I'd found them. Every day I read messages from women who shared my limbo existence. Those of us in remission could imagine our futures in the grim posts of the ill.

Some members gave up good-paying jobs to become activists. Ah, civic duty. I just couldn't hear the call. However, I did have a standing invitation from the local paper to write on any subject. I suggested a personal essay in time for Ovarian Can­cer Awareness Month.

The next day an editor phoned. "I hear you're writing a piece for us." "I already wrote it," I said.

My productivity surprised even me. On Sept. 2, 2002, almost one year after my surgery, "Everything Changed" ran in The Kansas City Star. I got calls and letters. I helped form a local support group, but I warned the members I was not a "group person." I might have only months to live, so I had to be choosy. Only one project real­ly appealed to me. On the Internet I found cancer poems and asked friends to read them at an event, "Women, Interrupted: An Evening of Music and Poetry Dedicated to Cancer Survivors and Loved Ones Lost." The event was a success but I wouldn't remain an activist long. Contrarian that I am, I started an argument.

The Pulitzer Prize-winning play "Wit," about an English professor dying of ovarian cancer, was, in my opinion, one long I-admire-your-bravery speech. So what if it put ovarian cancer on the map?

My ovca sisters were appalled. I was a traitor. But I was thinking like a writer again. I even wrote a new poem, ti­tled "The Oncologist and Her Ghosts." On the anniversary of my diagnosis, I followed the lead of another group member: —I sent my oncolo­gist a gift with a card that read, "Do you remember what you were doing three years ago today? I do. You were saving my life."

It was beginning to look like I would have to learn how to live again instead of how to die. I decided to apply to the Bread Loaf Writers' Conference in Vermont, where I had won a scholarship in 1989. Bread Loaf required 10 poems, and I couldn't just trot out my sleek, muscular, published warhorses. I had to write new poems and quickly whip them into shape. It was a humbling experience, but I got the application in the mail.

My ovca sisters don't hear from me much anymore. They probably think I'm in denial, that I believe I'm cured. They couldn't be more wrong.

Cancer may take me yet -- next month, next year or in 10 years. Whenever death comes, my obituary will not call me a cancer survivor. I will die, simply, a writer.



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