Monday, May 24, 2010

Thoughts on Privacy

I've been thinking a lot lately about privacy. And I know I'm not alone. Unless you've been living under a rock -- or just quietly going about your life offline -- you've undoubtedly read about the dust-up created by our robot overlords, er, ahem, I mean Facebook, and their new opt-out-only privacy settings and the cash they're printing selling our personal data -- the things we like and don't like -- to companies who in turn target us with personalized advertisements. The problem with Facebook, so far as I see it, is that we all flocked to it -- after we abandoned the rusting amusement parks of Friendster and MySpace -- because we thought it was a place to share photos and catch up with old friends; we gave freely of our personal data -- joined groups, supported causes, etc -- because we were told our profiles would be protected. But the reality is much more complicated; now our profiles are being commodified and, most troublingly for me, much of our data is now Google-able.

I Googled myself today, and I discovered, much to my horror, a wall post I'd written on a group I belong to on Facebook, which contained a link to this blog, was the second result that appeared when I typed in my name. Now, I'm not so vain as to think that every day, dozens of ex-boyfriends, frenemies, potential employers, and secret admirers, etc are typing my very-hard-to-spell last name into Google and reading through the results. But I'm also not naive enough to think that people don't Google me, especially potential students, editors for whom I freelance, and, yes, potential future employers. And though I am proud of this blog and proud of the decision I made to take control of my health, I do not want the fact I had a double mastectomy and am a breast cancer gene carrier to be the second thing you see when you Google me. Yes, being a BRCA mutant and a card carrying member of the double mastectomy ladies luncheon society is part of who I am; but it's not what I want to define me.

When I saw the search results, I broke out in a cold sweat. I felt outted. I felt naked. And the worst part -- I feel powerless. There's no one to write to to say, "Kind sir, please delete this search result. I'd rather people not know about my boobs." I'm not sure when this happened. I googled myself a few weeks ago and nothing of the sort showed up. So I changed my settings, left a few groups, and well... I can't do much else.

Which leads me to larger, icky, existential questions about how to live in an era of oversharing, still maintain this blog (because I truly believe if I can help just one woman feel less alone and less scared, I've done something right), and preserve a modicum of my privacy. I realize it's a slippery slope; if I was truly interested in privacy, I would never have penned this blog or dreamed of telling my story more publicly. But I did those things on my terms; Facebook outted me on theirs. I'm feeling exposed and vulnerable and, regrettably, let down.

The truth is, the public at large is misinformed about BRCA mutants. As I wrote about in my last post, people can be unkind, judgmental, and, frankly, totally wackadoo in their perceptions and prescriptions. Because I'm not a breast cancer survivor, for whatever reason, my choice to prevent cancer by surgically removing the parts of my body most likely to try to kill me is deemed controversial by some, over-dramatic by others, and, at the very least, questionable by many. And I hate that this information about me -- this choice I made, this journey I've traveled, this genetic imperfection I have -- is now accessible to people who may judge me because of it. I've always thought of this blog as a place to update my friends and family as well as a place to connect to complete strangers; I've never intended this to be a destination for acquaintances, people I know but not well enough to tell them about all of this. And that's who that Google result make me accessible to: the people I don't really care to share this with.

When I first started writing here, I found myself questioning whether writing about my heath -- something so private that there are laws protecting the information I've giving away here for the world to see -- would end up harming me -- in terms of discrimination and judgment. I'd forgotten about that concern in the last few months; after all, I was reaching so many people, and telling my story was therapeutic for me. This blog, this forum, was not harming me at all; it was helping me, as well as others. But now I worry about my privacy again and wonder when the balance tips between help and harm.

Tuesday, May 11, 2010

Revolt against the brain-dead commenters

I guess I'm a glutton for punishment. Every time a news story is published about BRCA, I read it thoughtfully, take a deep breath, and then dive into the comments section -- a sinister, murky land filled with ill-informed trolls and their crazy talk. It both breaks my heart and makes me incalculably angry that strangers can be 1) completely insensitive to each other and 2) so thoroughly mistaken about the prescriptives they aver with such surety. The internet is full of cancer denialism, and this is my -- albeit small and meek -- revolt against it. Below, I've copied comments that illustrate my point; then I explain why they are wrong.

Comment: "Cancer is the non stop growth of cells, since they are trapped in the body they just grow in a 'ball shape'. It is believe that its trigger by high levels of stress. or negative feelings towards other people. Energy cannot be destroyed it only transforms, and sometimes transforms into bad things like cancer."

My response: This gem was left in response to an article posted this week about a mother and son, both BRCA2+, who battled breast cancer simultaneously. Though I'm tempted to tear apart the logic, and ridicule the grammar, I'll try to play nice. But this comment illustrates a sentiment that is very prevalent among internet trolls, and that is: IF YOU GET CANCER, IT'S YOUR FAULT. < Pause to compose myself > This is vile and reprehensible BULLSHIT. How can anyone say such a thing, let alone think it? If you have cancer, it's because you are stressed or have negative feelings towards other people. And if only you didn't have stress (who doesn't?) and negative feelings toward other people (oh, like the negative feelings I have towards you, internet commenter?), you wouldn't be sick. Where do people like this get off blaming the victim? Do they have any idea how wrong and insensitive this sentiment is? I'm guessing this commenter wishes to suggest being less stressed and harboring fewer negative feelings will prevent cancer, but that is not only wrongheaded, it's also easily misconstrued as a value judgment on those who already have cancer. And it's despicable.

Comment: "There is too much emphasis put on the BRCA2 gene. My mother had breast cancer, I had breast cancer, and my daughter has breast cancer. We were tested and it is not genetic. Cancer is just a disease that is becoming prevelant in today's society. Anyone, anytime can get it and they don't really know what triggers it. We need to find a cure now!!!!!!!!!!!!!!!!" (comment from the same article as above)

My response: Easy with the exclamation points, hoss. Nothing says take my well thought-out and rational response seriously than sixteen exclamation points. Sarcasm aside, I agree with this commenter that we need to find a cure now. But again, I think there is a major logical flaw in this commenter's argument (if we could be so kind as to elevate it to that level of discourse): my cancer wasn't hereditary, so therefore hereditary cancers aren't important. The truth is, there isn't nearly enough emphasis put on the BRCA gene. More education and outreach -- both in the general population and among medical professionals -- is needed; there is so much ignorance out there about hereditary cancer (not the least of which is the sentiment expressed by dumbass number one up there that cancer is caused by stress, not gene mutations) and more, not less, emphasis needs to be put on it. Secondly, this commenter is wrong that her cancer wasn't genetic; it was. All cancers are genetic. She claims her cancer is not hereditary, and that may indeed be the case. But then again, there could be other genetic mutations not yet discovered that could explain why three generations fell ill to the same diseases. Since hereditary cancers only account for 5-10% of all cancers, it clear something else -- and I'm guessing it's triggered by our environment, what we eat, and how we live -- is at work here. But to discount hereditary cancers because yours isn't is myopic and selfish.

Comment: "That could be a generational curse. They don't have to stop having children in their family, they just have to pray to break the generational curse. With man things are impossible, but with God nothing is impossible. Didn't you see now that they are both cured. God did that." (from the same article)

My response: I'm going to restrain myself here (which is very hard to do) and try to be evenhanded (and not get into a religious debate). But there are a number of things in this comment, especially, that gets my blood boiling. 1) "Generational curse": what the fuck does that mean? And who put it there? 2) "Pray to break the generational curse": um, please show me the evidence that prayer has ever repaired broken genetic code or cured a disease. 3) "They are both cured": did I miss the memo about the discovery of the cure for cancer AGAIN? Man, I'm always the last to hear about this stuff. < end sarcasm > They aren't cured. They have survived. Their disease is in remission, not gone for good. THERE IS NO CURE FOR CANCER. Why do we forget this? 4) "God did that": no, he didn't. Chemo did that. Radiation did that. Surgery did that. Lynda, the mom, did that. Cedric, the son, did that. The doctors who treated them did that. Please give credit to the people who took the actions that lead to the results. I'm stick of strange forces being blamed for causing cancer and sick of strange forces being credited for curing it. No. They took the initiative, they took control. Recognize and respect.

Comment: "Hmm. Profound. My father and grandfather died of kidney cancer, one uncle from brain cancer and another from bone cancer. My grandmother and two great aunts died from alzheimers. My maternal grandfather and his father died of heart disease. Maybe I should have my kidneys, brain, heart and bones removed so I can be sure I will live a very long life. Young miss, look out when you cross the street."

My response: This insensitive dreck was left in response to the amazing Lizzie Stark's Daily Beast essay about her preventative double mastectomy. I almost have nothing to say, since the stupidity of this fecal morsel speaks for itself. But I will say this: The commenter comparing apples to oranges; both Lizzie and I can live happy, productive, and peaceful lives without our breasts, whereas none of us can live without kidneys, brains, heart, and bones (although I'm dubious this guy hasn't already has his brain removed). To compare them (while also conflating the statistical risk of hereditary breast cancer with whatever risk of hereditary heart disease, kidney failure, bone cancer, and Alzheimer) is illogical.

Comment: "This young woman chose to mutilate herself. That was her decision. I personally would never consider such a radical approach. That's me. I would like to think I'm not so afraid of the inevitable - death - that I would start chopping off body parts or quit leaving the house. That's me." (again in response to Lizzie)

My response: First of all, Lizzie did not mutilate herself. Second of all, she never said anything about fearing death (or being an agoraphobe... not sure where that came from). But that's not what bothers me about this comment, or others like it. It's that these people seem to be saying, "Suck it up and get cancer." It's like they are saying, "Sure, you have lots of options at your disposable to avoid it but you shouldn't avail yourself of any of those options." Why? "Because that's not what I would do." Well, I don't mean to speak for Lizzie, so I'll just speak for myself: I don't give a fuck what you would do. And furthermore, suggesting that we shouldn't prevent cancer (and just sit back and wait for it to come) is as deplorable as suggesting we caused our cancers.

< Deep breath > I think I need a drink. It's almost noon. That's cool right? (Oh, a little shout out to all my readers -- and commenters -- who leave thoughtful, conciliatory, and admirative comments: you guys rock. I'm so glad to have your support. Let's hope the trolls never infiltrate this blog!) < Raising a martini glass > To logic, empathy, and kindness.