As the month of September arrived last week, so did some group messages in my Facebook mailbox inviting me to participate in this year’s version of the Facebook breast cancer awareness game. Since I deleted most of them before I read the details, I can’t tell you exactly what this year’s memes involve. But evidently, one of them is some variation in which the participant would post a status update that could be interpreted as an announcement that she was expecting a baby. Huh??
In the first place, were I, at age 57, to post such a status, it would have to be interpreted as an occurence on par with the Immaculate Conception. Since many of us were already menopausal when we were diagnosed with breast cancer, or worse, were thrust into abrupt, artificial menopause as a result of treatment, one can scarcely wonder that the appearance of all these implied pregnancy announcements might fail in their intended purpose, but instead might well shake up the Vatican perhaps. As a lapsed, long-disenchanted Catholic, I admit to feeling a certain amount of amusement at such a possible result, but not enough to un-delete these game invitations from my mailbox. Besides which, it’s the wrong time of year for this anyway, since presumably, the Immaculate Conception would have occurred nine months before Christmas, in late February. Or maybe I’d have to go Old Testament and change my name to Sarah.
In any case, the first version of this meme may have been the bra-color one, reported here by former Newsweek editor Mary Carmichael in a January, 2010 posting in The Daily Beast. As Carmichael succinctly put it, “This isn’t awareness or education; it’s titillation.” Quite a few of us who have actually had breast cancer felt the same way, and remarked on it at the time, including blogger Susan Niebur, in her moving and eloquent post, In the name of awareness.
So, imagine my astonishment to find that these memes keep resurfacing, in new and more complex variations. If you somehow missed these variations of the Facebook breast cancer awareness game, they go something like this. Only women get invitated to participate, via some sort of private message. Indeed, you are expressly instructed not to divulge the meaning of the game to any men, even though men get breast cancer, too. Then you are supposed to answer a few questions in a particular way, string the answers together, and post them on your status. The questions might be something like ‘where did you leave your purse,’ which you answer with some location, like ‘on the diningroom table.’ The next question is something like how long you left it there, which you answer with some time designation, like ‘for three hours.’ And finally you might state how many times you left your purse there this past week, like, say, ‘every day.’ So, then you are supposed to string these together, after an opening phrase such as “I like it…” Thus, your status update would be “I like it on the diningroom table for three hours every day.” After enough women mysteriously post versions of these status updates on Facebook to garner a critical mass of snickers, head-scratches, sly comments, or even national media attention, someone is supposed to say, “Ta-Dah!! Fooled ya!! It’s really about breast cancer awareness!” Kind of like playing Clue, and coming up with ‘Mrs. Peacock did it with a Spanner in the Conservatory.’ Except instead of solving a fake murder, it’s supposed to solve the conundrum of breast cancer awareness. Yeah, that’ll work.
Getting A Clue
Personally, I’ve never been a fan of chain letters, or of any of the updated social media versions of them. You know what I mean, those Facebook status updates, for example, that start with statements like, “Most people won’t repost this, but if you’re really, really my friend, and you don’t mind being publicly bullied, then you’ll be one of those few special people who gives a crap what I think of you, and you’ll repost this on your status to prove what an enlightened person you are, and also to save you the trouble of coming up with your own status update.” Call me a cranky loner — and I’ve been called much worse — but even if I agree with whatever manifesto about life, cancer or politics follows such an exhortation, I never repost these things, because the blackmail tone of the intro kinda ruins it for me.
Ditto these ersatz awareness games. Maybe it’s because I was one of those kids that got picked on and was actively, hurtfully excluded by groups of snippy It-girls when I was in grade school, but I just think there’s something so pointlessly contradictory about trying to do something noble by means of a vehicle that excludes people from the get-go. Why be sly, sneaky and coy about it? Why string along everyone who doesn’t get picked to play the game, leaving them largely clueless, in order to make your point? When the Big Reveal eventually occurs, what sort of message is everyone supposed to take away? Is this really a useful way to make anyone aware of breast cancer? In one of her October, 2010 posts about these games, called You Don’t Need Facebook To Raise Awareness About Breast Cancer, Jennifer Wright posted a photo of a miserable post-mastectomy scar, remarking, “Here’s a picture of a woman after a mastectomy. Oh my God, tee-hee, I like it with skin grafts!” That about sums it up for me.
Maybe I’m just too literal, but I think that, with all the awareness of breast cancer that has been achieved over the last twenty years or so, too many members of the public continue to be woefully clueless about the reality of breast cancer, especially when it recurs or metastasizes. Somehow, I don’t think deliberate obfuscation is the way to clarify things.
The Elephant in the Room
Over a year after Susan Niebur wrote the above post, I got to meet her, in person, at the National Breast Cancer Coalition Conference in Washington, D.C., amidst a group of other wonderful, articulate, snarky breast cancer bloggers. She is a thoroughly delightful and warm human being. You might never realize that she has metastatic breast cancer now, which saps her strength, leaves her in pain, and robs her time and energy. Yet, somehow, she continues to blog, be a mommy, a friend, an activist, and a physicist. In other words, she tries to have a life that is not entirely defined by the reality of a disease that is hell-bent on taking that life. One of her most recent posts, Tired and hurty and scared, describes this reality.
Think back to when you were diagnosed with cancer or when you found out that someone you care about was diagnosed. What’s the first wretched thing that clutched at your heart? It was fear, wasn’t it? Fear that this person might die. Because we all know that cancer can kill you. And breast cancer is one of the sneakier forms of cancer, with an infamous variety of forms, tumor types, invasive potentials and metastatic sites. Whether we are conscious of it or not, that initial fear we experience upon hearing The News is an acknowledgement of metastatic breast cancer, the kind that has no cure, the kind that can kill you. The kind for which only about 2% of all U.S. cancer research dollars is actually allocated.
How can this be? The bottom line we all fear is metastatic breast cancer. How is it possible that so little is spent on trying to understand it, treat it, cure it? How is it that so many people viscerally acknowledge the existence of metastatic breast cancer, but know so little about the facts of it? How is it even possible that there is only one day in October specifically designated for awareness of metastatic breast cancer?
This is a photo of the fantastic bloggers I met at the NBCC Conference. Susan is in the front, on the left, wearing her glasses and her lymphedema sleeves. And she’s not the only woman in this photo who has metastatic breast cancer. One of the other women in this photo who has mets has become a good friend. She has developed mets that have now paralyzed her dominant hand. Despite that — and because of it — she published this post yesterday, called Planet Unicorn. If you don’t feel a sense of urgency after reading it, then you’re not breathing.
I don’t know about you, but I’m way beyond afraid. I take this very personally. The prospect of another October full of pink teeshirts, ceramic frogs, pep rallies, and ‘hooter hoedowns’ (yes, that’s for-real) makes me angry, frustrated, and heartsick. As soon as I finish writing this, I’m going to be posting it on my Facebook status. And I’m not going to bully you into reposting it. I’m just going to invite you to read it, and maybe visit some of the links in it, and raise some real awareness about breast cancer. Before it’s too late.
To learn about metastatic breast cancer, here are some more helpful links:
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