Wednesday, October 21, 2009
The tale of two women
There were two important articles published this week on the subject of being BRCA+, and they represent two different poles on the spectrum of prevention and illness.
Lizzie Stark published "I’m 27 and about to have a double mastectomy" on the Today Show section of msnbc.com. As the title suggests, the essay details Lizzie's choice to have preventative surgery to avoid getting breast cancer. Lizzie is BRCA1+ and watched her mother, who first got sick when Lizzie was just 18 months old, struggle with the disease her whole life. Needless to say, anyone who has read any word I've written in this space in the last six months would recognize that not only do I wholeheartedly support Lizzie's very public declaration of her intent but see in her story many echoes of my own.
In Newsweek, Sara Sussman published "I’m 35, With Stage IV Breast Cancer." As the title suggests, the essay details the long history of missed diagnoses that has doomed Sara to a life of incurable breast cancer. Sara is also positive for the BRCA gene, but she didn't know this until she was finally diagnosed with cancer after years of trips to the doctor complaining of chest pain. The tacit implication here, of course, is that if she knew her BRCA status, not only would no doctors have told her she was too young to have breast cancer, but she wouldn't have been at stage IV by the time they found it.
The two essays represent the wide spectrum of experience of BRCA+ women, and both affected me very deeply. In Lizzie's essay, I saw myself. In Sara's, I saw my worst nightmare.
But what is really interesting (and frustrating and infuriating and bothersome yet wholly expected and inevitable) is the reactions the pieces have garnered. Sara's piece has but one comment, from a sympathetic reader who wishes the author the best in overcoming her illness. Lizzie's piece, on the other hand, has, at last count, 158 comments, most of them overwhelmingly negative (not to mention ignorant). Now, even though I've publicly declared my distaste for engaging with the naysayers, I read every single one of those 158 comments (and refrained from responding because I'm doing that here) because in so many ways Lizzie's choice is my choice and those reactions to Lizzie are reactions to me, too. None of those hateful comments inspired in me a change of heart, of course, and I'm guessing they haven't swayed Lizzie either (be strong, girlfriend). What these comments do reveal is a vast misunderstanding of the nature of hereditary cancers, a general queasiness about elective surgeries, a conspiratorial distrust of the insurance/medical communities, and a bone deep intolerance for other people's choices. I was nearly in tears reading some of the commenters' hurtful words -- many of which concerned Lizzie's decision to have a family one day, despite the fact that she may pass the gene along to her future son or daughter -- because those cruel and unenlightened criticisms are aimed at any young woman who makes the same brave choice as Lizzie. In other words, those people were spitting their vitriol at me, too.
Now, I know the web is full of crazies, and one needn't look further than the dozens of comments recommending unproven and dangerous alternative "cures" for cancer to realize we're not even starting on the same page here, let alone the same book. But the fringe is not my concern. It's the average person who writes things like "I hope her insurance isn't paying for this!! This should have to be paid privately, just like any cosmetic surgery!" Or the 20-year-survivor who thinks Lizzie can avoid cancer by eating healthfully and avoiding caffeine. Or the commenters who think breast cancer affects only American women because of the way we live. Or the person who suggest Lizzie is making "every one around you suffer with you when there's a good chance nothing may happen."
(I'm going to stop there because I feel the rage brewing and the tears forming.)
These comments display a radically intolerant/occasionally completely uneducated understanding of the issues facing BRCA+ women, and for better or for worse, are exactly the kinds of reactions Lizzie or I or anyone in our situations are bound to encounter at some point in our lives.
But all of this is so much more disturbing when considered along with Sara's essay and Sara's story. I mean, what if Lizzie took the advice of the hateful commenters, decided to forgo preventative surgery, and wound up like Sara, with metastatic breast cancer at age 35? What would those commenters say then? I'm guessing, from the lack of controversial responses to Sara's essay, nothing. Lizzie and Sara are bookends on the continuum of BRCA+ women. And for some reason, Lizzie can be condescended to, reprimanded, and called crazy, while Sara only elicits our quiet sympathy. I said I'm not going to engage the angry mob, but I will say this: it's not fair.
Lizzie and Sara and I are all the same woman. We're just at different places in our journey. Their pain is my pain. And no one deserves to be treated like that.