Thursday, June 11, 2009

Confucius say

About a week before I got the results of my genetic test, I cracked open a fortune cookie and found the following: Your dearest wish will come true. I have fond memories of the prophetic abilities of these Eastern desserts; when I was very young, before I could read or even appreciate Chinese food, my mother and I would stop by a Szechuan take-out stand at the mall and treat ourselves to cookies. Relying on my mother to read my fortune, and being completely gullible, I was astonished when my fortune read "You will be soon swimming in a large body of water" as my mother drove us to the pool. "The cookie knew!" I would scream, delighted. This was one of the many thoughtful lies my parents propagated during my youth (my father also told me that the person who has the highest score is the winner at mini-golf; naturally, I always won). The result is that I now have a devout reverence for fortune cookies and putt-putt.

When I read my fortune, I immediately thought, "My dearest wish is to be BRCA negative." But then I thought, what if that isn't really what I want? (In an ideal world my dearest wish is this: I wish cats could speak English. There. I said it.) My consolation prize for losing (or winning, depending how you see it, my odds being about 800 to 1) the genetic lottery was this fantasy that I could create something out of my experience, that I could write about being young and BRCA+. So, reading the fortune another way, I reasoned it could mean that I would get my wish to write, to maybe one day write a book about my adventure, to touch and affect strangers, to see my words in print. (Let my pause to again note that, being in publishing, I have complicated relationship with books; working for a publisher is a bit like working in a sausage factory: you'll never feel the same way about the end product again. But I do believe so very deeply in power of writing and reading. I also believe the way we do this is changing -- that's why I'm writing this on the internet as opposed to a cloth-bound diary latched with a gold lock. More than 140,000 books are published each year in the US alone; the problem with being a writer isn't getting published, it's staying relevant.) So I reread the fortune and realized, at least as relates to my genetic predisposition to breast cancer, I could accept my fate if it meant I could write about it.

You all know what happened next.

If my dearest wish truly was to be BRCA negative, the fortune cookie failed me. But if my dearest wish is to write, then maybe my wish came true after all. What results from all of this writing remains to be seen (perhaps I should consult another cookie?).

I've been reflecting on this a lot lately because Tuesday marked two months since I got my genetic test results. It's vertigo-inducing to reflect now, but I hardly recognize the woman in the counselor's office who sat, stunned, as she was sentenced to a life as a genetic mutant. I knew nothing then; though I don't know everything now, I am a vertible encyclopedia of knowledge in comparison. It's only been two months on the calendar, but it's been ages mentally. And I've changed how I feel about the fortune cookie. Yes, I'm a pseudo-writer, and I would be lying if I said I never have a desire to be published. But it's not the point any more. Two months ago, I really thought I was special, that I was the only one in the whole world going through this, that I was facing intractable choices all by myself. Today, I know I am part of a robust, active, and empowered community; I have made new friends, both in person and online, who are going through the exact same thing. No two of us are exactly alike, but we all speak the same language. And this genetic sorority I was initiated into two months ago has really emerged as the silver lining of this dark cloud.

I've been reading voraciously since my diagnosis, first Jessica Queller's Pretty is What Changes and now I'm about 20 pages from the end of Masha Gessen's Blood Matters; the great BRCA book I had so fervently believed I was the future author of has already been written. I'm not saying there is nothing new to say (after all, how many breast cancer memoirs are there out there? I'm guessing thousands. How many BRCA books? At last count, two), and I'm definitely funnier (looking? smelling?) than both Queller and Gessen, but my need to validate my condition by striving so single-mindedly for a book deal is no longer my motivating force. In thinking so much about the end product, I realize now I was failing to appreciate the journey.

My new friend S is making a documentary about her BRCA; she, too, is treading in what others might call already-explored territory (Joanna Rudnick's In the Family debuted on PBS just last fall). Like so many independent filmmakers, S is struggling to secure funds, and her surgery, which she hoped to document, is barely two weeks away. In a note she posted to the FORCE message board, she lamented "I was hoping that by doing this, I would be giving back, educating, and basically making it more meaningful for myself." She decried the last motivation as "purely selfish," but I recognized so much of myself in that statement. Both S and I are struggling to find meaning in our bad luck, to extract solace from our situation, and we both turned to creative outlets to actualize our strife. Both of our projects will continue -- I have no intention of abandoning this blog, even if I'm only writing to hear myself speak -- and S's film will get made, though likely not in the form she had hoped; but as we ask ourselves why we do what we do -- share ourselves and give of ourselves -- both of us have to reexamine our motivations and our abilities. As we journey through this life with BRCA, we will often confront obstacles that will force us to change course quickly. The swift evolution of my writing project and S's film attests to our ability to adapt.

My dearest wish is different now, too. My dearest wish is now simply to live, to beat cancer before it affects me, to be healthy for a long time. I hope I can rely on the power of the fortune cookie to ensure it comes true.

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