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07/07/2009
Advocacy Day wrapup
So here is what I decided, waiting in line to enter one of the buildings of the Senate:
People who want the best for us, people who mean to be helpful when speaking to us about infertility, will almost inevitably say something stupid. Something that hurts, something that will still make us angry years later even once we're past the worst of it.
And we've all spent time fashioning the perfect response, whether it's an incisive remark or a raw and honest letter explaining just why what that person said was wrong. But then not finding the nerve to say it in the moment when it would do the most good, or cancelling that e-mail message without sending it, because we know the ignorance had been backed by kind intentions.
I was thinking of this as I stood in line, talking to a woman who was also there for Advocacy Day. She was there for her daughter, who was undergoing treatment. She spoke about witnessing what her daughter was going through, feeling helpless at first but now galvanized. She talked about her own fertility problems, knowing firsthand how much her daughter hurt, and wanting to do whatever she could, not only to ease that pain, but to let her child know she supported her in a real and useful way. And as I listened, I was moved. Wait, that's too mild; actually, I was rocked.
And I thought, what if, instead of saying something snippy, or sending a link to an article that will never be read, or taking our hurt feelings — our rightfully hurt feelings — and squashing them down into a little internal ball of bitterness, we said, "I know you love me and you mean to be helpful, so here's what you can do"?
I doubt there's any magic formula to elicit the emotional support every infertile person needs,but few of us actually get. It's sometimes hard to ask for, and sometimes hard to give. But the practical support, the concrete effort — what if we just asked for it? What if we said, "Can you please call your congressman and ask him to help build my family? Can you please write a letter? Attend a meeting? Do something?"
I wonder what that would be like, if each of us convinced just one person to do that. If you can think about the possibility without feeling tempted to try it, well, you're a tougher mark than I am.
I don't really know what to say about Advocacy Day except that I have never had a more empowering moment as an infertile person. You walk onto Capitol Hill feeling ant-sized, dwarfed by these imposing buildings. I mean, my God, Thomas goddamn Jefferson. And you think — well, I thought — Who do I think I am, mounting the same steps where Lincoln gnawed on his lunchtime lamb shank?
By the end of the day, you know who you are. You're a citizen who has the right, and maybe even the duty, to ask your elected representatives to act on your behalf. You're well prepared and passionate. You've met with your representatives' aides, you've spoken about your personal experiences, and you've made a clear and direct request for action. You deserve to be heard, you know it, and you've demanded it.
Easy.
It really was easy. We volunteer advocates were thoroughly trained by RESOLVE's Advocacy Day team. We were told what to expect, given a list of talking points, and stirred into action by a really moving address by the Advocacy Day organizer, who said, in part,
I’m here to tell you that you’ve just taken the first step out of just being and becoming someone who matters. You’re on the path to regaining your worth, your self esteem. [...]
What I can tell you is that you matter. You matter because your actions matter. Your efforts count. Your voices are heard. And by you believing that you matter, and raising your voices on this issue, you are making not only yourselves matter, but every person still lying in bed this morning wondering how they’re going to drag themselves out to face another day.
Today, you take back your dignity, your self worth. And you demand recognition for an issue affecting millions and millions of invisible families across the country. And with your efforts, these people become visible again.
So Monsieur Descartes, hear this: I act, therefore I matter.
And if you can read that without wanting to storm the barricades, well, you're a tougher mark than I am.
So we met in the morning before our appointments on Capitol Hill, and I looked around the room at the 100 or so volunteers there, and I thought, So many stories in this single room. No one was there because she'd failed her first two Clomid IUI, you know?
And there among us was our very own Stirrup Queen, who in telling her own story encourages so many to tell theirs. That night I sat in her kitchen — pizza, pasta, chocolate chip cookies, more delicious even than you imagine — and had the kind of conversation I long for, the storytelling of someone who's been there, is still there, and won't forget what it's like to be there even once she leaves. That night her stories were told in counterpoint with Josh, as funny and generous as she is. The company was so good that I didn't want to leave, and repaid them for their hospitality by missing my train, needing a ride, and inconveniencing them greatly. I am one fresh hell of a dinner guest.
I'm currently out of town on vacation, but when I get back I'll post at length about the next leg of Stirrupalooza, our celebration of Mel's book. As a quick preview, I'll say that prizes will be in the offing for anyone who's posted a review of the book on your blog or on one of the booksellers' sites, so if you'd like to participate, read the book (or even an excerpt) and make your opinion known. If you can read her book without wanting to spread the word, well, you're a tougher mark than I am.
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What's the name of the RESOLVE Advocacy Day organizer who wrote that speech? It's ridiculously moving and effective and inspiring. She is good.
I thought your writing about your day on the Hill was stirring and very touching. And I thought how true it was that even when someone means the best, has the absolute best intentions, has even been there, they will often say the wrong thing. And I thought that even though there were no people who had "failed their first two Clomid-IUI" there, they are no less experiencing infertility and the issues. The emotional toll of trying to have a child are not strictly tied with how hard it is, or how expensive it is. The failures, every failure, adds up and takes its toll. So while they weren't there, they are part of the face of infertility too, and should not be dismissed as less important.
Oh, we're all great big softies (even if jealous ones-- I wants me some of them Mel's cookies too, AND the conversation that went with). But maybe I am that much of a cynic, because even as I act, I doubt that people who haven't been in the trenches in some way are able to grasp this particular pain. And when those people are our elected representatives, I worry I might be right. Though you've got a couple of good ones, so maybe your activism is that much more likely to be heard. I hope so.
You had me, Julie. You really had me. Until this:
No one was there because she'd failed her first two Clomid IUI, you know?
No. I wasn't there this year. That doesn't mean I didn't want to be there, or that I won't go in the future. And, no, two failed Clomid runs followed by a successful Follistim IUI doesn't make me nearly as much of a veteran as you or countless others - I readily admit that. But that doesn't mean I don't think this is important. That doesn't mean I don't care.
You know, you're absolutely right. I should have found a way to denote breadth of experience, which is what I meant, without also implying depth of feeling. It was clumsy shorthand, and I'm sorry for it.
@Robbie
I can understand that line kind of stung.
But the odds are, if - no when - you attend an Advocacy day you will be the notable exception to the rule.
Only, you wouldn't even be an actual exception, since you had to do more than 2 attempts, and beyond Clomid.
Isn't the challenge precisely to make the 2-Clomid-cycles=bingo crowd speak up as well? And after that the 0-Clomid-cycles=bingo crowd?
Holy Christ! If this doesn't double the Advocacy Day attendance for next year, I don't know what will.
I hope I can attend some day! This is such an important issue, regardless of how much treatment a person has gone through, or for how long. I have lived in three states - one that did not cover anything related to infertility (including testing), one that covered testing and limited treatment (everything up to but not including IVF), and now, one that covers almost everything (up to four IVF procedures). While there are limitations (possible maximum yearly benefits, some procedures, etc.), it's a huge improvement.
In my previous marriage, I didn't have any testing after trying to get pregnant for 3 years, because absolutely nothing was covered. I couldn't even make it to the 2-clomid-cycles crowd because I couldn't see the doctor or get a simple blood test without paying for it out of pocket. Since we would have also had to pay for treatment, testing wasn't worth the expense. I was afraid to go down that path without knowing how much money it would take to be able to have a child.
I moved to a state that covered testing and some treatment, and that was a huge improvement. Even better, though, is the state where I live now (I'm remarried). I am once again trying to get pregnant without success. The difference, though, is that I don't have to think about cost, what's covered, or how much of a financial risk we're taking when we make decisions. While I would rather not be dealing with infertility at all, the fact that my testing and treatment is covered makes a huge difference emotionally. I can make decisions based on what's right for us, instead of our cash flow or credit line. I hope that some day, that is true for many others, too.
Beautiful post, Julie.
Don't tell me you're getting soft in your old age? What, It'll be baby dust sprinkles all round soon.
Seriously, though, bravo.
Am I the only one who cringed at the first paragraph of that speech? I'm all for advocating for IF coverage, I've harangued some elected officials myself, but please, don't encourage the belief that you need to have children in order to matter!
But then, I'm also one of those "silent" ones that got pregnant after two failed Clomid IUIs, so what do I know.
Hi there ... I was at Advocacy Day ... and I am someone who has struggled with IF and is your exact 2nd Clomid/IUI scenario - yet I still continue to struggle and have not attempted treatment beyond the above due to lack of insurance coverage. I understand your point, just wanted you to know that I care about the issue even though I'm not as far along in the journey as most that were present. I was humbled by the people surrounding me in that tiny little meeting room found it empowering to meet so many women who have and are still in the process of conquering IF. That day was my "coming out" day as someone struggling with Infertility - and I'm glad I went.
I was there precisely to spread the message that RESOLVE so beautifully prepared for us to deliver that day.
Because of my experience with IF, no matter how long it takes to achieve pregnancy, I will always be a supporter of the issues we brought to light that day ... and I'll be proud to say that I contributed "back when I was just a youngin' in the IF world" ...
P.S. - I have a video clip of that exact portion of the speech you quoted if you would like to post on your blog.
I'm with Robbie. When I got to the line No one was there because she'd failed her first two Clomid IUI, you know?, I had to reread it about five times to make sure I understood what you meant.
I am someone who managed to get pregnant on Clomid. Twice. No IUIs even. Just the good old-fashioned Death March of Sex, as I like to call it. (Or what Akeeyu once called "Clomid and Fucking.")
I'm also someone who started making plans to participate in Advocacy Day, but then stopped short for that exact reason. No matter how difficult my fertility challenges have been to me, it seems there's always someone ready to tell me that I'm lucky that it wasn't as hard for me as it was for them and ready to relegate me to what I've come to think of as infertility's second class. So ironically, it was ultimately other infertiles that made me hesitate about participating, worried that my voice would be discounted.
You know what, though? Among everyone I know, I am the most vocal person about infertility. Even among all my friends who have survived infertility -- no matter how difficult their struggle or what the outcome was -- I am the first one, the loudest one, the most open one, and sometimes the only one, who is willing to discuss infertility. I've shared my personal story. I've encouraged friends to seek treatment. Through it all, I've tried to make people understand that there should be no stigma to something as common as infertility. I advocate every day.
So maybe it's not the caliber of your struggle that matters as much as the caliber of your voice?
I completely agree with Jen and Robbie, above. I was lucky enough to get pregnant twice (miscarried the first) on medicated cycles and never had to go to IUI. It really stings when people who are "more infertile" tell me that I don't really have a problem.
And, like Jen, I'm probably the most vocal and educated about IF (and miscarriage) out of all of my friends. And when I learn that someone new is struggling to have children, I'm the first one out of the gate providing information and support.
I thought the point of Advocacy Day was to bring people together, not deem a large number of IFers not worthy of the title...
I thought the point of Advocacy Day was to bring people together, not deem a large number of IFers not worthy of the title...
I really don't think Julie was trying to say that. At all.
Thank you for this Julie and for all the people who will take this message and show up another year or call someone locally or do whatever they have to do.
I've been working on some people up here in Canada, but it's a long tough slog. The one thing that I have learned over time though, is that no one really wants to meet with the infertiles or the dead baby parents and generally no one will force them. So the people you meet are often the ones who are most interested, and put their hand up at the staff meeting because they have a personal stake in the game.
Either they are in the trenches themselves, or their parents were or their kids are, or they have a close friend. Always. And those same people are literally sprinkled all over the political scene.
They are almost always in the closet unfortunately. Makes me sad, because as I remarked at one party full of political hacks, if we all came out you never know what might happen! (That one remark caused a collective intake of breath and a run to the bar among numerous people...that damn closet will never empty at this rate.)
For those who can't attend an Advocacy Day, by the way, an incredibly effective way of lobbying is to just go out a be a volunteer for a local politician, state or federal or whatever. Knock on doors, volunteer in the office, write a cheque, work on their website, or host a coffee party during the election, and eventually, you will get to know a lot of people who become staff people and maybe even the politicians.
And when you call later on and say hey, there's a bill I'm interested in, can you chat? They will return your call first, before the stranger's or the lobbyist.
Thanks again, for all you do, and for this post.
Hello ladies (and any men that read this blog).
I chaired this year's Resolve Advocacy Day and wrote and delivered the speech that Julie excerpted. The issues presented at Advocacy Day are too important to have gotten sidetracked by literary flourish and so I wanted to respond.
First, everyone is welcome and needed on Advocacy Day and throughout the year to fight for the issues presented: people who have had no problems getting pregnant, people for whom it took 6 months with a Clearblue Fertility Monitor, people "cured" by two rounds of acupuncture, people who failed 10 ivfs (like myself) and people who were successful. And we need their friends and families too (special thanks to the mom who attended this year - my mom participated last year and was instrumental in getting Cong Barney Frank to co-sponsor the legislation. I'm very proud of her, a woman who easily got knocked up 3 times - my brother and sister and I are her much loved "accidents".)
During the recruiting period for Advocacy Day, I had women tell me that they didn't think it was right for them to attend because they had children and it would make those that didn't uncomfortable. On the flip side, some women were scared that their stories wouldn't support the argument in favor of insurance coverage. Nonsense to all! Infertility is a disease that affects one in 8 families in this country and that story needs to be told by as many people who can beg, borrow or steal a phone to call their congressmen and senators to tell them about it. Some women who attended felt compelled to tell their personal stories on Capitol Hill, regardless of how hard it was to deliver (alot of tears were shed on Capitol Hill on June 25). Some (including myself) stick to the facts and figures and the overall impact on families and use that to make the argument. It's not about how badly you suffered, it is about being heard.
Julie's comment, read in context, is merely about the "stories" in the room. Clearly, for the regular readers of this blog, you must be aware that Julie is driven by her own experiences and the individual ordeals suffered by each of you in the quest to have a child. That's all. Please don't personalize her words to anyone's detriment. Anyone who participated in Advocacy Day really wasn't there because they failed two clomid iuis, or because they had a late term miscarriage after 8 ivfs. They were there because they wanted to turn their own personal pain into positive change for the benefit of all would-be parents who can't obtain treatment because of costs. THAT'S why people were there.
As for my speech: I certainly didn't say that you need children to matter. In fact, the exact opposite. It was a reminder to all women (in particular) who felt that they didn't matter because they didn't have children that they do in fact matter because they choose to believe in themselves, choose to take positive action, choose to participate in society, choose to speak out on behalf of those who can't, choose to ACT. I am happy to provide the full speech to anyone who wants it.
Thank you to everyone who attended. And for those of you who couldn't or didn't attend this year, please reach out to your elected representatives and ask them to support The Family Building Act (HR 697 in the House, S 1258 in the Senate). And then ask them again. And again. Go to their events in your district. Get in their faces. They work for you! Make them earn your vote.
And Michelle, if you can send your video clip to info@resolve.org, it would be much appreciated.
These issues are too important to get sidetracked by unintended perceived slights. Please, don't look for them. Instead, please understand the message Julie is sending out - get involved. Fight for the issues important to you. Be part of the solution.
Thank you for allowing me to participate in this discussion.
I like this post, and I'm finding myself both amused and startled by the comments following. Because I read your "controversial" line with a smile; I understood exactly what you meant.
I think one of the most interesting things about the IF blog-community is that even among us there are so many layers of pain, and so many layers of jealousy. For those who are freshly diagnosed infertile, the injustice of having to go through treatment at all is brutal. They are denied what their friends get for free, they cannot jump up and down when they see two lines on a pee-stick, confident in a live birth in 8 months. They've already lost months, years maybe, and they are in pain.
But for those of us who are ART veterans, all we can be is angry and jealous. And maybe a little snobbish. I mean, the only think I get to take out of my 5 ART cycles and 4 m/cs are my scars. If I can't feel just a little bit more bad-ass than everyone else, what do I have? A big pile of fuck-all nothing. Nothing but bills and used needles and wasted years.
So I understand where that line was coming from. And I see why some people got upset by it.
Oh, and I love your writing, Julie.
Yay! I am so glad you were there to be a voice for us.
Thank you.
I wish I could have been there. Even though I couldn't, I will keep being an advocate for ART from here. I will shout from the rooftops all I went through to get my son and how others can't afford to even try. It's time for a change.
I just wrote to my senator. Hope the bill makes it out of committee.
I haven't yet read the other comments, because I don't want to feel my opinion tainted (in the event that someone else already brought it up), but MAN:
"No one was there because she'd failed her first two Clomid IUI, you know?"
that stung a little bit. Maybe you meant that in some funny way that I'm just not getting, but some of us have been struggling with infertility for a very long time with nary the chance to even do a single clomid + IUI cycle. I just don't get the need to divide this already sectioned-off community any further. I mean, does my voice matter less because I haven't (for a multitude of reasons) done dozens of expensive and painful procedures in an effort to start a family? Is it that only the people who have "really tried" are the ones who have a right to speak on behalf of infertile couples? Or worse yet, is this just another "my pain is SO MUCH WORSE than yours" kind of thing?
Because really. Isn't that a shitty game to play? I mean, only a person with a serious psychological disorder would want to win that kind of argument.
I am so glad that there was a day of advocacy and that there were people there to speak on behalf of myself and my husband. But I'm not especially glad to know that there weren't people there to represent ME, since I cannot count myself as lucky enough to have even had the chance to try. It seems to me that having a room full of people who have been financially lucky enough (and physically healthy enough) to have been able to undergo so many rounds of various ARTs doesn't really get to the crux of the issue, does it? Treatments are expensive (even with excellent insurance), and beyond the general need to recognize the prevalence of this issue is the need for Congress to do what it can to make treatments affordable and available to ANYONE who wants to start a family.
I apologize- I'm probably overreacting to this, but I have read way too many blog posts from fellow infertile women trying to divide those who have (apparently) suffered enough to call themselves infertile from those who have been playing with the other kiddies in the Clomid sandbox. I sincerely hope that isn't how you intended that comment, but it sure did come across that way.
Just because we haven't resorted to a donor egg IVF cycle doesn't mean I'm not infertile. I don't believe there are levels of infertility. Either you can conceive and carry a child without ART or you can't. It's sort of black and white issue. Yes or no.
I love your blog, but as we head into our next medicated IUI cycle your line felt like a slap in the face. As though I don't fit in with the fertile myrtles because clearly I'm not fertile, but you don't include me in the infertile group either.
Julie, Julie, Julie. I decide to look up the blog for the first time in ages and not only do you have another baby now (hooray!!!!!!!), you're still getting folks riled up. I'd be delighted if I were a 2-clomid cycler myself. I think it's rather catchy. In fact, my next garage band will be named "2-Clomid Cycler."
And, for you 2-clomid cyclers out there (man, that really is catchy! I just love typing it.), there's no rank and file in the infertility world, honest. It's sort of like when people hear about my late miscarriage with my twins and say, "Oh, I only miscarried at 10 weeks, nothing like yours." Well, their babies aren't running around and playing any more than my twins are, so I don't see why my loss is any worse than theirs is. If you aren't a "tee-hee, my husband looks at me and I get pregnant" type (and no, that is not catchy. I do not like typing that out. It makes my innards itch and my teeth want to explode.), then you're infertile by my lights.
You know, I don't really know what I want to say but I couldn't click away without saying something.
I come here as a women who TTC'ed for six years until "accidentally" falling pregnant, developing PE and HELLP before giving birth prematurely to a 26 week daughter who weighed 15oz. So much of what you said is valid to the premature community. Not one of us hasn't had someone well meaning say something hurtful to us. It would be fantastic to be able to say to people "I need you to..."
I would love to see more people to come forward and tell their stories. Awareness goes such a long way.
To repeat, in case others didn't read this earlier:
You know, you're absolutely right. I should have found a way to denote breadth of experience, which is what I meant, without also implying depth of feeling. It was clumsy shorthand, and I'm sorry for it.
I wish I hadn't seemed to be negating some people's experiences when what I intended to do was marvel at others'.
Julie, I am so proud of you for attending Advocacy Day in Washington. That takes commitment and *guts*. Thank you for being there to represent and help be the voice for so many of us.
I wholeheartedly agree with Risa Levine's comment. Let's remember what it's all about, it's all about taking steps to help in the fight against infertility.
To reach out to your elected representative, click on the link below to make your own voice heard on The Family Building Act (HR 697 in the House, S 1258 in the Senate):
https://secure2.convio.net/res/site/Advocacy?s_oo=ggtT2JEQKhvr1T9WUh0MxA..&id=237
- Lisa
You are an inspiration for having the guts and wherewithal to attend Advocacy Day - now I feel like I should get off this butt-imprinted chair and do something good for the world! Dang it!
http://michael-mansguidetopregnancy.blogspot.com/
hey if you know any guys who would like a week by week guide to help his wife out during pregnancy please pass this along