Monday, October 12, 2009

On Awareness

I've been thinking a lot about "awareness" lately.

Maybe its because there is a sea of pink all around me. Pink ribbons. Pink sneakers on football players. Pink baseballs bats (phallic, no?). It seems that everything and anything that can be mutated into something pink, is. All in honor of what? Breast cancer "awareness"? And this is where the sour taste comes up in my mouth and makes me make that face. You know, the one with the eye rolling and the "oh really" and the "give me a fucking break."

Not because I discount the hundreds of thousands of women (and men!) who have had to contend with this particular brand of cancer. Or the pain they have suffered. Or the disruption of their lives that continues well into remission that can be blamed squarely on the disease.

As a cancer survivor and someone rendered infertile because of it, I get it. I so get it. Cancer sucks. Of this I am aware.

But what's WRONG with that first sentence of the previous paragraph? WHY are there hundreds of thousands of people who have to deal with this? WHY is it enough that we are aware of the situation? Because if breast cancer is predicted to take down, what is the stat now, one out of every eight of our sisters, is there anyone out there un-aware of the dangers? Yes, I know, don't smoke, don't drink too much, be good little girls, but guess what, breast cancer strikes goody two shoeses, too. Is anyone, anyone questioning other root cause(s) here? Or is it enough to blow pink balloons out of our asses?

I used to think I was the only one that made that RUFKM face with the pink. But then I ran across this amazing article by Barbara Ehrenreich in an old Harper's magazine. And yes I know its long and I'm usually not one for multiple pages, but I remember reading this for the first time years ago and shouting, YES! Fucking right on! Shaking my fists in balls of rage and wanting to go set something on fire.

Warning: she doesn't mince words. And if the following statement pisses you off, you should probably skip the link:
In the harshest judgment, the breast-cancer cult serves as an accomplice in global poisoning-normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.
But seriously, I am getting worked the fuck up reading it again right now. No, listen, I changed my mind, you NEED to go read this. And then tell me if you find any similarities to other situations you are dealing with right now at this moment in your lives.
To the extent that current methods of detection and treatment fail or fall short, America's breast-cancer cult can be judged as an outbreak of mass delusion, celebrating survivorhood by downplaying mortality and promoting obedience to medical protocols known to have limited efficacy. And although we may imagine ourselves to be well past the era of patriarchal medicine, obedience is the message behind the infantilizing theme in breast-cancer culture, as represented by the teddy bears, the crayons, and the prevailing pinkness. You are encouraged to regress to a little-girl state, to suspend critical judgment, and to accept whatever measures the doctors, as parent surrogates, choose to impose.
And yes I know I should be thankful to be alive. And yes, I have been told to believe that chemotherapy and radiation were my saviors. And sure, I saw the tumor shrink on the fancy X-ray machine.

But here's the thing, kids: I never felt bad before my cancer was diagnosed. I never suffered until my treatments began. And when I look down at the 10-inch scar running in a crooked line down my belly (thank you, med student who was allowed into surgery) more than just a little part of me wonders if anyone really knew what the fuck they were doing. And that wonder is intensified every time an ultrasound picks up those little surgical clips where my ovaries should be and the current med student goes, oh hmmm, that's interesting...

Ok. Now I realize this post has drifted to a place that probably makes some folks uncomfortable. I'm sorry. That really wasn't my point. Well, actually, it is. What I had started to write about was the question that I always have in my mind, "where is the line between "Awareness" and simply "being an asshole?"

This is something I've been thinking about and trying to vocalize ever since I googled my own name the other day and found (yet another) blog post by Cheryl Miller quoting me. (funny how a few phone conversations with a couple of us has given here quite a bit of material, no? Infertility! It's a gift that keeps giving!) Here's a passage:

This conflict between privacy and exposure was something that fascinated me while interviewing the bloggers. When I first went in, I was a little skeptical about all the talk of raising awareness from these (mostly) anonymous bloggers. Many hadn't even told their families or friends. If you can’t even talk openly with the people closest to you, I thought, how are you going to educate the public at large?

After talking with bloggers, I changed my mind. For one thing, my interviews made clear how difficult it is to be "out" 24/7 about your infertility. Who — and what — to tell is a question the infertile have to struggle with on a daily basis. Do you use every awkward exchange as a “teachable moment,” an opportunity to educate others about the 6.1 million people struggling with infertility? And who is appropriate to "educate": relatives you see once a year, co-workers, neighbors, total strangers who just happened to ask an innocent, but painful, question? During an interview, [m.] told me about how she was teased by co-workers who were unaware of her infertility. “Do you go into the whole story right there in the break room?” she asked me. “Or do you just let it slide?”
Like most of the time when you read about yourself in print, its like, yes, sort of, but not really. Here's what really went down: break room yes. Three younger co-workers, yes. Teasing, not really. More like gentle ribbing of me and my no-nonsense at work persona and how I would be with kids. This was pre-pregnancy, pre any knowledge whatsoever that we were trying.

And you tell me, would you feel a need to stop the copy machine, turn around, dramatic pause, and proceed to make every single one of those young women, some of whom you supervise, feel like utter and absolute shit because the fact of the matter is you want more than anything the situation they think would be hilarious to see you in? Do you ruin their lunches? Do you become that person that can't take a joke and what's more, is the break room really the place you want to talk about missing ovaries and the anguish they cause you?

At that point, I chose no. But that doesn't me I always do.

Back to cancer. Back in my cancer days, me and my cancer buddies would go to this free summer camp up in the mountains. It was a blast. One day out of the week was "media day." It was the one day that local press, papers, TV stations were allowed to come bug us and get their feel good human interest, you know, "Awareness" stories.

And dudes, we ran with it. We'd place bets to see which one of us could make the pretty anchor lady cry first. We'd see how graphic we'd need to be before the camera man squirmed and looked away. And no, we were not above removing prosthetics, tricks with stumps, making broviac-hickman ports squirt, showing scars, some fresh, and pulling out hair and taking off wigs right there on camera.

Now you tell me. Was that awareness, or were we just being assholes?

These days, I see that I am not the only kukd chick that struggles with this sometimes fine line. Monica over at Knocked Up Knocked Down talks about it a little in her most recent post:
a buddy at work whose wife is 12 weeks pregnant e-mailed to see if Kev and I had talked about baby names yet. I could've just said "no" like a normal, sober, clear-minded human being. But I just had to gussy up my reply with more dramatic than that, something like this:

"No, we haven't started thinking about names, since this is our fourth pregnancy. There's a 50% chance this won't work out anyway since it's a boy, so we're just keeping our fingers crossed and hoping a living baby will come out of it. Then we'll name him."

Immediately after hitting "send," I felt bad. I wished I could have taken it back. It was like this old-me coming through all of a sudden, the gloom-n-doom me who was high on pain for a year-and-a-half, dredging it up and wearing it boldly, daring anyone to challenge it.

Why couldn't I give this guy just a simple, friendly response without bringing up that whole bitter truth? Why not just let him have his innocent and happy little e-mail exchange with a fellow expecting parent? What was I hoping for - some kind of sympathetic response? I felt like one of those people I've always been afraid to become: putting it out there all the time - I'M A DEAD-BABY MOMMA AND DON'T YOU FORGET IT! - to the point where the world grows tired of the subject, and, even worse, to the point where I'm really just clinging to this pain-crutch as an excuse to not engage in normal discourse with another human.

And like most times when I read Monica, I sit there an think, yes. Damn. I do this too. Not always. At least I try. But then I remembered an exchange on FB that just happened. Recently I took a leap and invited several of my work colleages on to my FB page. And I got this response from one of my friend requests:
i'll confirm you, but please know that i am an almost 45 year old gay jewish man. my posts are not always g-rated. i wanted you to know that from the start. i always give folks that info so that they know.
Not one to be outdone, what do I do? Do I say, hey, no problem! Thanks for the heads up. I'm sorry that some of our colleagues aren't as open minded as they claim? Oh ho no! Here's me:
don't sweat it. I am a 35 yr old married atheist with two dead babies. I don't think I would qualify for a G-rating either.
So, hmm. Awareness? Asshole? I honestly still haven't decided.

and here's more full disclosure: after this long and exhausting rant on awareness (what you get when I don't post for a while), some of you may recall that that really cool thing that M and I did several years back was supposedly all for Childhood Cancer Awareness. Ironic? Hypocritical? No dudes, simply a fall back. The original intent was to get a boatload of actual cash for cancer research and one local charity, but that fell through when our primary sponsor became a publicly traded company right before we set off (thus complicating and eventually nullifying the really cool plan that we had for fundraising).

So maybe that's another piece of my anti-awareness-ness. Maybe I just see it as a fallback plan, and not a plan in itself.

28 comments:

Smiling said...

great post... this is the type of awareness people need. I also really needed a reminder to cut back on my own edgy comments and think about picking and choosing my moments of reveal a bit better...

I always feel like I walk away from your blog a better person some how. Thank you.

Mo and Will said...

m.,

this is an amazing post. And all i have to say is yes, yes, yes, to all of it. To the difficulty in finding the line between exploiting your situtation and wearing your pain as a badge of honor and bringing awareness. Both on the cancer front and on the fertility front, I get it. Completely. And while cancer-wise I no longer go for shock value ever and people who didn't know me then are shocked to find out how bad things were when I was sick because I keep the version so short - had cancer, had chemotherapy, got better - I DO do this now with infertility and miscarriages. And I am not comfortable with it and yet I find it happening all too often. It's SO good to hear from you and this is such a thought-provoking post. thank you.

Mo

AKD said...

This is just fantastic. I am a two-time cancer survivor. While it was probably only peripherally (at most - probably not at all) related to my infertility, the idea of people stopping at awareness irks me. I get looks of shock when I say that I don't really like the LiveStrong bracelets - it was a fad to make people feel like they're "helping," but few people tangibly helped through the donations of their time, money, or other resources.

Amazing post.

WannabeMommy said...

Great post. You've really made me think about why it is I sometimes do that whole asshole "I'm-infertile-so-f*ck-off" response thing when people ask me about kids. I just don't know. You talk about pain being the drug, and maybe that's it—we're addicted to the self-pity because it's safe, it's all we know. How sad is that?

Ryan's Mommy said...

OK, first, I had to laugh at the image of you and your childhood cancer friends screwing with the reporters. Hilarious!

On the infertility front, I have tended toward the "in your face" approach to awareness. Meaning I tell people probably too much. I do it mainly because I'm always seeking fellow closet IFers who I can bond with, but also because I consider myself sort of an advocate for IFers everywhere.

I'm now wrapping up my 7th year of IF treatments, and I've learned over time to be a tad more reserved. Some people are just judgmental a-holes, and whether they'll tell you to your face or not, some of them do not have nice opinions of people who go to what they consider "extremes" to build their families. All these negative stories in the media about ART aren't helping, either.

Two Shorten the Road said...

re: awareness vs assholeness. ;)
For a while, when people hassled me about not having kids yet, I'd say, "We've been trying, but we're having a hard time, because I only have half a uterus." And then I'd smile smugly inside as they tried to stammer their way out of that one. But after a while it wasn't fun anymore.

Rachel said...

I honestly have no clever comment. Just wanted to say that I read your post and was wowed.

angie said...

This is a great post and a very very powerful article.

"This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more feminine or spiritual-only more deeply angry."

Woah. Your post and that article should be sent to everyone who ever has worn a ribbon anywhere. Thanks.

Julie said...

This post blows me away. Raising a not-pink flag in your honor.

Lucy said...

The rhetoric of the pink ribbon was my thesis topic--spinning off of Ehrenreich's article. Another good one is Think before you Pink...in an old MS. It will anger you to see how misdirected all the money raised by the pink ribbon really is. Totally get it.

Breast Cancer Action is a VERY different kind of group...no pink ribbons for them!

Lollipop Goldstein said...

Holy shit have you given me way too much to think about. Awareness for awareness sake--not so much. Awareness that is an actual rallying cry to change or education--I'm into. It's a fine line--what is for education and what is to make the other person feel like shit? Make ourselves feel superior?

Bluebird said...

Fabulous post. I hate when you're gone for a while (I miss you!), but if this is what we get when you return, I might take the trade :)

There is so much truth and so much food for thought in this. I think, sitting here trying to digest it all, what I'm left with is that awareness WITHOUT MORE is worthless.

m said...

Smiling - you make me blush. And seriously, right back atcha.

mo - so funny you mention this. I hadn't brought back (or even thought about) my cancer days until we started IF treatments. And then it seemed a world of unresolved issues and emotions came flooding back with that thought of injecting meds into myself. LOVE the avatar, BTW.

AKD - OMG the LiveStrong rubber bands. So with you on that.

WannabeMomma - thank you, and I'd love to take credit for that analogy, but Monica over at KuKd nailed that one on the head.

m said...

Ryan's Mommy - I think historically, I am far more "in your face" than not. I think losing the girls mellowed that in some ways, strengthened it in others. I agree with you - sometimes there's no difference in your approach. People are just waiting for anything to hang their opinions on. Is it wrong to cringe when I see IVF in a headline anymore?

Two - word.
Rachel and Julie - thank you much!

Angie - how amazing is that quote? I swear, every time I read the piece it gives me chills.

Lucy - would love to see your thesis. So envious of people like you that actually did theirs on topics that matter. Kudos to you! Seriously.

Lollipop - that is such a compliment. Thank you. I've been sitting on this post in my brain for a while now. It felt good to get it out. I'm just happy that I didn't alienate with it (at least, not that I'm "aware" of) Sorry. sorry....

loribeth said...

This is an amazing post.

I remember reading that Barbara Ehrenreich article awhile back. And with all due respect to those of you have battled cancer, it reminded me a lot of our struggles with infertility & loss too. People who haven't walked this path are always so eager to put a positive spin on the situation. They like to talk about how "brave" & "strong" we are, when we really don't feel that way. They don't really want to hear about how awful we're feeling. They want to hear about the happy ending of a healthy pregnancy, and to assume that, if/when that does happen, that everything is all better now, when it's not and never will be entirely fine.

Lots to think about here!

Lavender Luz said...

M, I was here yesterday and came back today just to say I was here. I read you, I heard you, I am proud of you for writing this.

I just wanted you to know that.

Alexicographer said...

Here from LFCA/Kirtsy. Wonderful post. Thank you so much.

Perhaps it was last year's pink-ribbon month when my local paper ran a blog entry (part of a series authored by one of their paid journalists, arguably not truly a blog, but blog format) about a young local woman who had died of BC, an aggressive, invasive form. Part of her story, as recounted, was that she'd done everything right (annual physicals, self exams, ate right, had breastfed her 3, yes 3 (and she really was young, mid-20s) babies, etc.), no family history, aggressive treatment, etc.), and yet she still died. Quickly and painfully. The "moral" the blogger derived from this? Be careful! Do your self exams! You can't be too careful! Ladies! Do those self exams!

I should have, but couldn't bring myself to bother, commenting that the real "moral" of this story was that tragic sh.t happens to people who don't deserve it and there's nothing we can do to make that impossible.

(On a lighter note, my word verification is "Melsfull." Lollipop, please step away from the cookies!)

Kami said...

Great post! I have thought about awareness a bit too. I think the BC thing is mostly to make money - money that is probably mostly kept by the fundraisers and other people who sell pink ribboned items and keep a portion of the profits.

For me, the IF awareness is getting the general public to change their behavior so they don't unintentionally hurt those trying to have kids or just have a bit of compassion for the shit we go through.

I think I would land on being on ass most of the time. It's my nature.

KuKd Chick said...

Thanks for this thought-provoking post. Just to add to Mo and Will's comment about "finding the line between exploiting your situation and wearing your pain as a badge of honor and bringing awareness:" DUDE. That is exactly it.

Here's my take. It's not like in the movies, where people get to forever wear that pain badge of honor and awareness; where it's a part of their character and everyone just accepts that fact. Like, Julia Roberts in Steel Magnolias: she was diabetic. She could die any time. Everyone knew that was her problem and it came up constantly - she wore it like this big'ol badge.

For me, it's been tough to swallow that the real world isn't so gentle to the vulnerable ones who are going through shit. I recall that sinking in dismally, a voice to my own self: reality doesn't work that way, honey. I could tell when people's eyes glazed over, when they got these sort of bored and put-out looks on their faces: they don't wanna hear about this anymore, me and my dead-baby woes. Suckage. That part sucks balls.

Sometimes I think I care too much about what other people think of me. Maybe I should just be that forthcoming and honest all the time, and if people get irritated by it, well so be it. That's that balance you're talking about - if you find a way to hit it, let me know. ;-)

dana said...

awesome post! i went to target on my lunch break today & was waiting in line...looking at all the little last-minute-grab items...there were pink ribboned batteries (from the 'bunny' company) and i thought 'what a fucking cash cow the color pink is.' that's what i think about pink.

as for infertility, i take the asshole route. i've already made 'aware' those that are close to us. our new neighbor asked us why we didn't have any kids after being married for 7 yrs. i told him my parts were broken. he laughed and thought i was joking. i gave him the universal sign for fuck you and walked away. idk, maybe i was just having a bad day. or maybe i'm just tired of taking the time/effort to make ppl aware of infertility when at the end of the day, those not affected could care less.

damn. i sound really bitter today.

loribeth said...

By the way -- Ehrenreich was on The Daily Show with Jon Stewart this week, promoting her new book -- "Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America." She made some excellent points about how the flipside of our culture's relentless focus on the positive is that nobody really wants to hear about anybody else's problems. Sound familiar??

Lani said...

there is so much here. wow. at this moment i am struggling with living as the identity of "babyloss mom." i don't want this to be all of me, or what people always think of when they see me. and i know it also has to do with my actions as well. I also don't want my life to be all about the fertility issues we are having right now either, yet i write about it on my blog. there is a fine line b/w educating and being superior as lollipop has said.

this really has given me so much to think about as i continue on this journey.its all tough, every way you look at it.

the article was brilliant. i did not watch the interview with her on the daily show yet, but chris did and he said it was great.

this part of the article got to me-

Worse, by ignoring or underemphasizing the vexing issue of environmental causes, the breast cancer cult turns women into dupes of what could be called the Cancer Industrial Complex: the multinational corporate enterprise that with the one hand doles out carcinogens and disease and, with the other, offers expensive, semi-toxic pharmaceutical treatments.

which i know is a whole different point, but one that disgusts me thoroughly.

i went from home birth to fertility meds in one fell swoop. hmmmm.

anyway, thank you. great post :)

Shelli said...

I just wanted to say this post was really thought provoking. Awareness just is not enough. It's very hard to walk that line of "educating" and coming off as an asshat. But I'd rather do that than say nothing.

Found your blog via Mel, and now mad at myself for missing your great writing (I won't any longer).

tireegal68 said...

I finally got here via some other posts ( like stirrup queen). I have always felt uneasy about this cheerful pink cult and the corporate feel good greed that has overtaken what is a horrible disease with even more horrible treatment. Thanks for the ehrenreich article too!
The other day I was looking on line for a day planner that was interesting and the only one I could find was a breast cancer awareness one from one of those big companies. With something stuck in my throat I ordered it , read Mel's article and immediately cancelled it. I knew it didn't feel right to do that and I am glad I didn't. I know that sounds trivial but I think that companies profit from the aaaaah factor of this stuff and i am not going to be a part of it!

nancy said...

I'm not even sure of how to respond to this post. It was really well written and I see what you are trying to say, I'm just silent in having anything to add. So I'll just let you know I have read it and give you a big internet ~hug~ for it.

Catherine W said...

I've been thinking about this post for a couple of weeks now. I still don't quite know what I want to say in response.

You have written something so true and so powerful here. I have no experience of cancer but the whole 'awareness vs being an asshole' thing. . . that is a line I seem to cross and re-cross on a daily basis. I want to keep it a secret but I also want everyone to know every single detail. Maybe I just want to hurt them. Sigh.

Sue said...

I am new to your blog (thanks for your comments on mine!) and am so happy to be here. Or rather. Glad to have found you.

That conflict between wanting to wear the badge and not bringing people down? it's a tough one. Sometimes I find myself enjoying the heavy silence as I mention grief, or dead babies or late term pregnancy loss. You can be aware, but does that mean anything?

I have conflicting feelings about breast cancer, too. I don't know what your diagnosis was, and I hope I'm not offensive here, but I see so many pink ribbons (Barbara Ehrenreich (sp?) is right) that it almost makes me roll my eyes -- hey, everyone let's jump on the breast cancer bandwagon -- we'll look great for promoting *awareness*! Does that acknowledge the actual experience of those dealing with the disease -- does it actually help them?

Meanwhile, there are other slightly less prevalent, but uniformly more virulent forms about which no one knows anything about. Ovarian cancer, anyone? My mom died an ugly and brutal death from this, as much because no one knew anything about it as because of the disease itself.

In some ways, I'm tired of being the woman whose mother is dead and whose babies are dead. "Can we just move on already?"

No. Sorry. Even if it doesn't dominate, it's always there. Be aware.

(sorry to rant. I'll try to contain myself in the future...)

theluckylife said...

A week after my dad died, I got a call from a co-op that I was supposed to fetch some organic produce from. She said - sorry your box wasn't ready, there was a mix up. I said - no, the reason the box didn't get fetched was because my Dad was murdered. As soon as the words were out of my mouth, I couldn't believe how terrible it sounded. Taking out my anger on some poor unsuspecting soul. I was too embarrassed to ever go back there. I know your post is about awareness etc, but the facebook thing made me think of those strange, grief inspired words that just plop out sometimes. The ones that remind you you aren't living in the same world as everyone else anymore.

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