Saturday, October 31, 2009

How to Remember Something We'll Never Forget?

There is a short, sweet, completely non-controversial email in my inbox that I have been ignoring for over a month now.
Hey! How are you? We're booking a show near [your city] and wanted to let you know. It's Dec. 5 at the [pretty cool pub]. Had a blast the last time we were with you. Would love to see you both again.
This is from a band that we love. One whose sound is that wall of noise and distortion that somehow creates melody that I embrace. One that we cannot believe hasn't broken into the big time yet. And its true. The last time they were in our city, we had a great time. We kicked ourselves when we realized they were staying in a crap motel when we have space to spare. We promised ourselves the next time they came around, we would open our home to them. They have no idea how much their last show meant to us. Or that the last time we saw them was one of the first times we had actually emerged from the apartment in over a month.

They had no idea that our babies had just died.

They had no idea I was even pregnant. So how would they know that December 5 is such a loaded day. That is the day Isa and Jovi were born. And died. The most horrific 24 hours I have ever experienced. The day that changed our lives forever. One that we alternately try to hold forever in our memory and one we try to forget.

So, this email is simply marked as unread. And I'm feeling awful about it. It's weighing on my mind. There's no veiled "can we crash at your place?" request. There's not even an obligation to respond. But I have to. I need to.

So what's our plan? Do we set aside December 5 as a day of mourning? Write back and say, gosh guys, we won't be around. Sorry to miss you? Do we spend yet another 24 hours wallowing in our grief and self-pity?

But dudes, we do that every day. Do we really need to set aside another date on the calendar dedicated to remembering?

It's not like we are ever going to forget.

I've had this discussion with M. a few times now. And I think as the day gets closer we are on the same page on this one. What would our response be if the girls were alive? I think it would be Bring on the Fucking Band. There might have been a few moments showing off our beloved kids before shuttling them off to grandparents. If the girls were here, we would not be afraid to just live. Like we always have.

So where is it written that we need to spend their birthday bathed in tears? I'm not saying a few won't emerge. Christ, we are only human. And I do seem to be waxing nostalgic as the leaves start to fall and I'm reminded of the quiet evenings I spent pregnant last year indulging myself in take out and bad TV while M was covering local football games. Good times, man, truly good times....

But I cannot wait for some mystical sign to tell me its ok to start living again. I can't hold on to this grief-haze for the rest of my life. If I behave like a normal human being it doesn't mean I'm not hurting. And perhaps it's selfish of me to assume that others around me aren't?

On December 5th we will open our home. Open our hearts. Maybe we'll tell our friends about the year we've had. Maybe we won't. Maybe we'll confess that the time before the last time we saw them, we were in the midst of the two-week wait for the positive test that gave us the girls. So hopeful, so happy...Maybe they'll bring us that same luck this time around.

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.