“The Air Fell Empty”

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“…there was nothing we could do, and the air fell empty as it had been before we came…”

Per Petterson, Curse the River of Time

The above quotation describes a failed political demonstration, one last gasp after years of similar demonstrations have made no impact. When I read this, my chest felt tight. I worry that the air will always be empty when it comes to education about infertility, loss and adoption.

I understand this post may upset some or even many but after two years of plugging along trying to make a difference, trying to use words (my weapons of choice) to convince, persuade, create empathy and aid political action along with many others, I feel like very little has changed. Small victories yes (several thanks to our own Athena Keiko Zoll): the PETA protest, the New Hampshire bill not passing, the Ricki Lake rebuttal, the positive education I think Bill and Guiliana Rancic have done. But for each small tick in the box, there are many New York Times (our newspaper of record) articles marginalizing the suffering and focusing solely on the sensationalistic issues. Despite my series, I haven’t seen one sympathetic profile of just a woman or man going through infertility and what that it is like in any mainstream publication. Instead, we read this.

As ALI bloggers, we preach to the choir, and it is of comfort that there are others out there suffering too who can lift us up.

Yet for every blogger seeking comfort, at least 3,000 of them on Mel’s blogroll, there are literally millions more suffering in silence. We all know the numbers. I was once one.

This is going to be controversial, but I have to say that it seems the national institutions that are supposed to be helping are somewhat aloof, or maybe they are tied down with their own problems. Maybe the traditional media is drowning them with stories they are constantly responding to, but I have to say that other than pleas to call my local congresspeople (which I faithfully complete) I don’t feel a lot of momentum from them. There’s no electrifying force behind them, like, for example, the grassroots movement that got President Obama elected. Why? So many of us are passionate about educating others. I think if we could be mobilized, maybe we’d have a chance.

I don’t want the air to be empty. But sadly, I worry it is.

Infertility, by most accounts, is only going to affect more people as time moves on. Why do so few people seem to care? Why are our cries deafened by the night? Do you think there is anything we can do?

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20 Comments

Filed under Infertility

20 responses to ““The Air Fell Empty”

  1. We can keep talking. We can keep blogging. We can bravely tell the stories of infertility and encourage others to do the same. I marvel at how alone I felt during my IF journey, compared to how often I meet women who have had similar issues (past or present). We’re out there. We have to come together and bring infertility out of the darkness and into the light of public conversation, support, and medical research. I’ll keep telling my story– even when it hurts (like now when I’m struggling to tell a very dark part of the story). You keep talking too. Silence is our enemy!
    Thank you for this post. I will be sharing it on my blog, themommygauntlet.com.
    Best, Lisa

  2. Pingback: “The Air Fell Empty” | themommygauntlet

  3. I don’t think people care for a lot of reasons. One, it’s sad and complicated and silent and hidden. Two, we, the people suffering from it don’t want to talk about it. And three, it’s about sex which is still totally taboo in this Puritan country. But mostly I think it’s because IFers generally don’t want to bring it up. It’s too personal and they want their privacy. Also the nature of the disease, one that doesn’t kill but just mames (deeply, destructively) is not fodder for public outcry. No one cares about the disease that wounds your heart and leaves your sense of self-worth spiraling. They care about the disease that takes their mothers and brothers and children away. They care about the diseases that cause death and tangible loss. The loss associate with IF is too easy to ignore, especially when the people suffering that loss don’t want to talk about it.

  4. m.

    Esperanza makes some very valid points. At the end of the day, we are still seen as talking about genitalia, and that is just too juicy not to sensationalize and take it to extreme places. I think Lisa is right too – its up to us to continue normalizing. Continue telling our stories – the successes, the failures, the alternate paths and choices and decisions.

    I so understand your frustration, especially after your beautiful series of profiles. But they were read! And maybe they were read by people who never expected to read them, and despite the advocacy fatigue, I do believe there is value in persistence, and it connecting personal faces and stories to issues.

    Last year, one of my young state representatives introduced legislation that would create an infertility insurance mandate. It was unlikely to pass, but I had to go talk to him, and let him know, hey, you know me, but you might not know this bill would help ME, and for that I thank you. And he told me that while his family hadn’t been affected, too many of their friends had been – he had been affected by the stories of his friends and decided to try to do something about it. There are glimmers….

  5. It’s hard to speak to those who won’t listen.
    It’s hard to listen to those who won’t speak.

    I was shocked watching Bill and Guiliana on the Today Show try to get the message out about infertility and Matt Lauer was more interested in moving onto the next segment. The majority of stories in the media dealing with infertility seem to be after the couple is finally successful, which story wise completely undermines the message of the struggle and pain infertility causes. I can’t recall one where the story ended with a couple picking up the pieces and searching for meaning without children.

    Unless there is some form of march on Washington forcing our struggle into becoming news, we’re left blogging in the dark hoping someone will hear us.

  6. I think that the media isn’t going to tell the story about infertility the way we would tell it until a mainstream audience refuses to accept it. So I think that change needs to happen at a grassroots level. BUT … I don’t think that blogs that talk mostly about infertility are going to make that change, mostly because people who aren’t infertile don’t seek out infertility blogs. We need to get into the food blogger community, and talk about infertility. We need to get into the parenting blogger community, and talk about infertility. We need to get into the wellness blogger community, and talk about infertility. We need to get into the fashion and DIY blogger communities, and talk about infertility.

    In short, we need to go where people are reading NOT to get information about infertility, and give them information about infertility, so that it becomes part of the mainstream conversation. Only then will people routinely refuse to accept the kind of bullshit we see in the media.

  7. Sarah

    I don’t think our culture values children, childbearing, or parenting. I mean, sure, everyone’s okay with you having 1.2 kids or whatever, but as a whole, our culture is anti-child. We are so intent on pushing birth control, don’t have kids before you want them/are ready for them/have traveled the world and partied hard, do anything you can to avoid responsibility until absolutely necessary…no wonder there is no compassion for couples struggling to bring new life into the world. If you’re infertile, most people will secretly (or not so secretly) think “hey, it’s what nature intended”, or “the world is overcrowded anyway”, or “what’s the big deal? now you can stop worrying about saving for college tuition”.

    • I respectively beg to differ, Sarah, on your point about our culture being anti-child. Just look at any magazine cover or online newsflash and you can follow in real time any and all motherhood tales and pregnancies (last week Kate Middleton, today Jenna Bush). That’s a sea change from when I was in my 20s/30s. Parenting today is presented as the ultimate self-actualization (pregnancy and birth news are shout-from-the-rooftops accomplishments). Today’s meta message is if you’re not a parent you’re a second class citizen. If you listen carefully you’ll hear lots of street cred building “as a mom…” references, and all kinds worshipful mom reporting. To wit this summer’s Olympics: http://blog.silentsorority.com/narrative-bias-and-why-context-matters/
      And let’s not overlook the props that go to men who are fathers. In the old days you truly didn’t know who had children and who didn’t. Children today are the ultimate accessory. Yes, people get justifiably annoyed by helicopter parents who pamper their children to the extreme, but we live in a seriously parent-clubby society. This is one of the challenges of living with infertility. Everyone assumes children are a given … if you don’t have them (what with all those fancy fertility treatments and children on stand by to adopt) you must be to blame.

  8. It is discouraging when a worthy idea doesn’t gain traction.

    But maybe we just keep on doing what we can do — your amazingly wonderful series — and know that you are doing your part. Maybe with that, someday an electrifying force may appear.

    Without it, it most likely won’t. I hope you keep going with the Faces of ALI series.

  9. I think that so many people keep silent about their infertility that most people don’t know anything about it. Breast cancer was a taboo subject for a long time and now everyone talks about it, wears “save the tatas” shirts, etc. I think that we need some more public personas in the fight and maybe even a marketing campaign from RESOLVE to spread awareness.

  10. Esperanza summed up my thought – “the nature of the disease, one that doesn’t kill but just mames (deeply, destructively) is not fodder for public outcry.” I think that too many people see IF as an INCONVENIENCE and not a disease. My own sister, who fully supports a national healthcare solution, said that IF coverage should not be included in that because it’s a nuisance and not a disease. WHAT? She truly thinks that being unable to have children is less traumatic than having a “terrible disease that needs treatment.” This makes my head spin, and it hurts my heart. My own sister – who watched me suffer through 2.25 years of trying, 2 IUI’s, and 3 IVF cycles to get one child, in the same amount of time it took her birth and then conceive TWO more children (3 years total) – thinks that IF coverage is a nice-to-have and not something that people really need – because children is not something that people NEED.

    Holy shit – that’s the problem right there. You don’t NEED children – so people don’t care if you can’t have them.

    Disgusting.

  11. OMG Courtney nailed this….So many people feel IF treatment is elective. Well, there are 2 ways for me to have kids, IVF or adoption. They both are ridiculously expensive. I chose the less expensive route. That was the extent of my election of services…I elected to go through IVF instead of electing to adopt. Need children? Who needs boob jobs(some are covered by insurance) and erect penises? But those are covered treatments. OOOHHH this frustrates me! I’m going to keep blogging and talking about my experiences and getting the word out! That’s about all I can do at this point.

  12. Courtney that is it in a nutshell. How many times have we heard from people to not be selfish and have children.

    I tell everyone, absolutely everyone about my IVF journey. I just figure you never know who is in your shoes.

  13. It’s a conversation we need to keep having. With each other on our blogs and in the world at large. And by the world, I mean our coworkers, our friends, our families. I don’t have a pulpit, but I can help someone understand my struggles by talking about them openly, one-on-one. To anyone who will listen.

  14. All of the above rings true to me.

    I think the media tend to like stories that are black & white, clear-cut, easy to package into a 90-second clip. Infertility is none of those things. There are too many shades of grey, too many variables and individual variations on the theme, too many complexities that can’t be easily explained and summarized.

    It also occurred to me that there is also still a considerable segment of the public that is uncomfortable with or outright opposed to the idea of infertility treatment, of tampering with nature/God’s plan, etc. (Often from the same people who hound us about why we don’t have children and what blessings they are… and often from people who have never had reason to use this technology.) I’m not saying that fertility clinics & doctors couldn’t use a little more regulation/standardization, but there are certain people & groups who want to strictly limit what they do or close them altogether. And even if legislators are sympathetic to our cause, they don’t like to court controversy. Fertility treatments, in some quarters, are still highly controversial — particularly when public tax dollars are involved.

    A couple of years ago, the Ontario government commissioned a task force, which produced a report on family building in my province. The task force report contained numerous recommendations on fertility education & treatment and reforming Ontario’s adoption system — including public funding through the health care system of a minimum number of IVF treatments. Aside from a few changes to make adoption easier, absolutely nothing has been done. Everyone likes the idea of adoption & giving homes to children who need them, but nobody wants to push for expensive infertility treatments in a time of fiscal restraint, even if there is a strong argument to be made that public funding of IVF (particularly if you mandate single-embryo transfer) will actually save the public healthcare system money in the long run.

    I did actually like the NYT article this past weekend about a family that has spent years trying to complete their adoption of a little boy from Guatemala. I thought it highlighted very well the extent some of us go to in order to build our families, the complex issues involved, and why it’s not as easy as some people think to :just adopt.”

    (stepping off my soapbox now…!)

  15. Jessica – this is my goal for 2013: to crack that tipping point for this community. And I’m pretty much ready to do WHATEVER it takes at this point, b/c I am fed the fuck up.

  16. I do agree that there needs to be greater awareness. There are lots of good explanations and comments here to explain where the barriers lie. At the same time, there has been the odd story here and there that make it to air time or to a sympathetic reporter notebook — with just the right level of compassion. The reporters aren’t easy to find ( I know because it took me years to locate them), but ultimately, they showed a serious willingness to hear the gory details. Since you asked … here are a few examples of reporting that went beyond the gushing, Disney ending. They add up to a serious attempt to present the reality of the infertility challenge when nature and science find their limits:

    Infertile and proud: the growing women’s movement to de-stigmatize infertility
    http://shine.yahoo.com/healthy-living/infertile-and-proud-the-growing-womens-movement-to-de-stigmatize-infertility-2608943.html

    When Couples Come to Terms with Infertility
    http://www.theglobeandmail.com/life/parenting/pregnancy/fertility/when-couples-come-to-terms-with-infertility/article1578863/

    Infertility TV Interview
    http://www.sacandco.net/story.aspx?storyid=72660

    Facing Life Without Children When It Isn’t by Choice
    http://www.nytimes.com/2008/06/10/health/10pati.html?_r=1&

    Ultimately, there needs to be a willing protagonist to reveal the struggle, … (and it seems more women than ever today seem open to sharing) and an audience open to a POV beyond conventional wisdom.

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