Two Videos from Infertility Advocacy Day

Just a quick post to share two videos from Advocacy Day. The first is a short interview with Risa Levine, our keynote speaker and RESOLVE Board of Directors member, and her thoughts on how Advocacy Day went this year.

The second is Rep. Debbie Wasserman-Schultz's inspiring address to the volunteers before we headed out to our appointments. The first video is just over 2 minutes long, the second is about 11 minutes long. Something short or something more, depending on the time you have to view them. Please also feel free to share on your own blogs; you can snag the embed code right from the videos below. Enjoy!

RESOLVE Advocacy Day 2011 in Washington DC Recap

RESOLVE volunteers in front of the Capitol Building.

From left: Lee, Kara, Theresa, and me.

I never thought advocating for infertility awareness could be so empowering, but RESOLVE's Advocacy Day was just incredible. I advocate all the time on this blog; I write letters to my legislators all the time. But to actually walk around Independence and Constitution Avenues in the heart of Washington DC, to walk into Senator John Kerry's and Senator Scott Brown's offices - I've never felt so humbled or proud to be an American. I've never felt so honored or privileged to take advantage of my rights as a voting citizen in this country. And I've never been prouder of the infertility community.

The day started with an opening training meeting where close to 100 volunteers representing 18 states gathered. I was thrilled to see folks from Night of Hope again, including Lee Rubin Collins and Risa Levine, winners of the Hope Award for Advocacy. Lee was in the Massachusetts delegation with me and two other volunteers, Theresa and Kara. Barb Collura, the Executive Director of RESOLVE, opened the day with introductory remarks. I was totally not expecting for her to recognize me for the whole PETA counter-campaign, but I won't lie: it felt good to stand up and be recognized for that. Then Risa came out to deliver our keynote address... it was simply beautiful, powerful, and so inspiring. Risa has kindly sent me a copy of her remarks and allowed me to republish them online, so here is just a brief excerpt:

Wherever you are in this process, I know how hard it is for you to be here. How hard it is for you to identify with this disease that has stripped you of your identity. How hard it is to say "I am infertile".

I want you to think about all of the diseases you've experienced personally or through friends and family. I want you to think about how you or others have been affected by those diseases but how your infertility has redefined how you see yourself and how you relate to every one else in the whole universe. How unfair the unwarranted shame and loneliness has been. I want you to think about your own goals and dreams and self definition and for some of you, the retirement village in Florida that you will never join because you can't compete in the grandchildren wars. I want you to think about all of the times you bought Girl Scout cookies to support your friends' children and all of the times you heard that children are our nation's future. And I want you to believe that YOUR right to have YOUR disease treated so that YOU can have children whose cookies can be bought or whose health care should be provided for are just as important as everyone else's. And then, I want you to walk into Congressional offices today with the confidence that you are justified, no, righteously compelled and duty bound to demand that the treatment and cure of infertility be a priority in our national agenda of providing health care to the people of this country.

Rep. Debbie Wasserman-Schultz.

We went back over our key advocacy issues for each congressional visit: 1) infertility is a disease; 2) pushing for co-sponsorship of an Infertility Tax Credit Bill; and 3) to have legislators call the CDC to demand to know why work stopped on the National Action Plan for infertility. Barb announced that Senator Kirsten Gillibrand (D-NY) has agreed to be an original sponsor for the Senate version of the Infertility Tax Credit bill. (A bill number and name is still forthcoming.) And then our group was treated to a special guest appearance from Congresswoman Debbie Wasserman-Schultz (D-FL), who gave a rousing 15 minute speech on the importance of the advocacy work we were doing, and to take our legislators to task to hear our concerns. (I'll post a video of her speech this week.)

And then... we were off to our Senate appointments. Our delegation from Massachusetts was followed around by RESOLVE's official event photographer. I felt like such an Infertility Rockstar!

Sen. Kerry's swanky Senate office.

We headed to Senator Kerry's office where we waited to meet with his Health Legislative Aid (or, Health LA in DC staffer lingo). After a short wait, we were ushered into the large conference room in Senator Kerry's office. I gave the rundown to the Health LA about infertility as a disease: stats, figures, and a brief overview of my personal situation. Lee then talked about the Infertility Tax Credit and the inquiry to the CDC. While the Health LA couldn't commit to specifics without running things by her boss, she seemed receptive to both the legislation and getting Kerry's office to call the CDC. And in the blink of an eye, we were shaking hands and exchanging business cards and then off to our next appointment.

We arrived at Senator Brown's office with just minutes to spare, after getting to his office in the Rayburn Building only to find out he had moved to the Dirken Building. We sat down with Brown's Health LA who was surprisingly receptive (despite Brown's track record with wanting to pare down the Massachusetts healthcare mandates- including infertility- back in 2009). She asked great questions and Lee was able to talk about how the Infertility Tax Credit would be a huge relief to military families, as TriCare (the military health plan) only provides discounted infertility treatment coverage at only four centers in the entire country. And then, as Theresa was explaining the part about the CDC...

Remember, Scott Brown: babies grow up to be future voters!

When in walks Senator Scott Brown himself. I literally could only mumble out "It's an honor to meet you" as I shook his hand and I probably could have caught flies in my mouth it was handing so wide open. "How about a picture?" he suggested, and we lined up and Scott Brown put his arm around my shoulder. Just as quick as he popped in he was out and I felt like was a starstruck teen giddy at meeting her dreamboat idol. Let me be clear: he's hardly my dreamboat idol, but he's still good looking whether I agree with his politics or not and he's still basically a political celebrity. Thank goodness our group was followed by RESOLVE's professional photographer, who snapped up a ton of pics of our group with Scott Brown.

The afternoon was spent meeting with our House representatives. Our group had scheduled appointments with Rep. Ed Markey, Rep. Barney Frank, and Rep. Nikki Tsongas. Each appointment went very well: each office was committed to calling the CDC and wanted us to send them the Infertility Tax Credit bill language asap for review. I had registered late so I didn't have a scheduled appointment with my Represenative, Rep. John Tierney, but our group agreed to swing by his office to drop off some materials for his Health LA. When we did, I was thrilled when the Health LA agreed to an impromptu meeting. I stepped up to the plate and delivered our whole Advocacy Day schpiel by myself (we had been trading off each of the three issues at each appointment). And then the icing on the cake: Rep. Tierney popped in at the end of our meeting and we got to grab a photo with him.

And suddenly, it was 3pm, all of our appointments were done, and it was time to decompress and grab some snacks at the end of the day debriefing and reception. As the delegates from other states returned, we swapped stories of the day. Alabama and New Jersey seemed to have the best success stories of support from their legislators; the lone delegate from Texas had a tougher time with the day for a variety of reasons: Texas is a huge state for just one volunteer to cover and her legislators aren't exactly supportive of mandated coverage. It made advocating for her cause pretty challenging. All the same: to blogger Hold My Hope, I'm so proud of you for taking on that challenge. Thank you for representing one of the biggest states in the Union by yourself.

Before I knew it, I was hitching a ride to the airport, on a plane and back home by midnight. I was exhausted- physically, mentally, emotionally - but I didn't regret a single second of the day.

When so much is taken away from us as infertility patients – without our choice – going to Capitol Hill gave me a sense of power and purpose in my infertility journey. I have often taken for granted my rights as an American citizen and taking part in Advocacy Day is perhaps one of the truest expressions of what it means to be an American. I had a voice. I was heard. And now, I commit to the work that needs to be done to ensure that my 7.3 million brothers and sisters struggling with infertility are heard too.

I really do believe Risa's words, that this was the most important Advocacy Day we have ever had. I am grateful and thankful to have been a part of the experience. Now, the real work begins: following up with my legislators and building public support for a forthcoming Infertility Tax Credit Bill.

I'm already marking my calendar for next year's Advocacy Day. You better believe I'll be there next year, and the next, and every year after - until we no longer need to advocate for infertility. I truly believe that with the advocacy work we did last week, I hope that's someday soon.

Me & RESOLVE Board Member Lee Rubin Collins.

Gearing Up for Advocacy Day

I've got the shoes - slip-on heels that are uber-comfy. And there's a backup pair of flip flops in my shoulder bag just in case. That's been the #1 piece of advice I've gotten from all of the other bloggers I've asked who have participated in Advocacy Day: make sure you have comfortable shoes.

I'm so. freaking. excited. for tomorrow. After work today, I hop onto a flight down to DC amd then starting bright and early at 7:30am tomorrow, Advocacy Day begins with on-site registration and breakfast. We train from 8am to about 10am, and then it's off to the Senate Office Building. I was thrilled to read on Friday's Advocacy Day update email that Rep. Debbie Wasserman Schultz (D-FL) will speak to our group at 9am before we head out! Rep. Schultz was one of the 20 co-sponsors of the Family Building Act of 2009 and is a vocal supporter of the infertility community. She spoke with members of RESOLVE in support of our community at a Congressional briefing on infertility last April. I am ver yexcited to hear her speak.

I'm nervous about tomorrow.

The other folks I've talked to have all assurred me there's really no reason to be nervous. Larry said it best to me last night, "What's the worst that could happen? They say to you, 'Thanks for sharing your story with me?'" He raises a very salient argument there. But I can't help it; I'm still nervous. Maybe it's more nervous excitement. I know I'll be in the company of over 100 people representing 18 states who will be doing the exact same thing: meeting with legislators and/or their staffers, advocating for infertility awareness and some key action items. And it's not like we'll be unprepared: we have plenty of materials we've been given over the last few weeks, there are resources online, and we'll be getting that last-minute training rally first thing tomorrow morning.

Still... I'm nervous :)

I'll also be really candid here: this whole OBL thing? Makes me nervous about retaliation. As much as I think it's important to release the photos eventually, I'm just praying the White House doesn't decide to drop those today or tomorrow. Like, seriously folks? Can you just wait until the weekend for that? Please? Thanks. It's been a few years since I lived in the DC area, but even when we still had the colored terror threat system, I know how the region gets in times of increased security. I had to put this (slightly irrational) fear out there: name it, own it, and realize that there's not really a whole helluva lot I can do about it.

Tomorrow I'll be speaking with folks on Capitol Hill about three key issues:

1. Infertility is a disease. I know it seems like such a no-brainer to all of us. Yet, even though WHO and ASRM define infertility as a disease, we haven't gotten that yet from the CDC. More on that further below.
2. Getting support for a possible Family Tax Credit Bill. Similar to the Adoption Tax Credit, a bill has been drafted (but not proposed officially) that would offer infertility patients a credit of their infertility-related out-of-pocket expenses. It would certainly supplement folks like me who live in a mandated state, but would be a tremendous help to the 35 other states with no infertility mandate. As I will be meeting with Senator Kerry's staff, you better believe I will close the deal on asking him to originate the bill rather that just co-sponsoring, as he's on both the Senate Finance Committee and its Healthcare subcommittee.
3. Asking our legislators to follow-up with the CDC to inquire about the status of last year's National Action Plan for Infertility. This was a huge step forward for our community: the CDC last year committed to researching and funding a National Action Plan for "an emerging public health priority." (That's how the CDC refers infertility - not as a disease. You can see why issue #1 is important to discuss with legislators.) However, all work has stopped on the Action Plan. We want to get our legislators to commit to pushing the CDC to move forward with their work or to at the very least, find out why work has stopped.

Throw in the mix some highlights of our journey- like the fact that despite the fact that I live in a state that leads the nation in mandated coverage, we're still looking at $15-20K out of pocket - my effervescent charm, and hopefully, a little luck - it looks like it's going to be one amazing day.

I also want to give a very public shout out to both Melissa from Stirrup Queens and Julie from A Little Pregnant: when I asked each of them, they were both very kind to give me some fantastic advice about what to expect tomorrow. They've both really taken a lot of the edge off of the nervousness.

I'll be updating throughout the day on Twitter, so if you're not already following me @miriamshope, that will be the place to read about all of my adventures on Capitol Hill tomorrow. I will of course have a huge update post on Friday with pictures, reflections, and maybe a little video. We'll see how much I can cram in tomorrow and how fast I can edit any footage.

So with that folks, I'm off. If you're going to DC, look for the gal in the dark teal blue shirt and dark grey pants; I'll be wearing a yellow RESOLVE bracelet too. Feel free to come over and say hi - I love to meet folks IRL. For those on the blogosphere, read about my exploits on Twitter tomorrow. And to all: come back Friday and read the recap.

Oh, and wish me luck :)

RESOLVE's Advocacy Day: A Real Woman's Story

RESOLVE's Advocacy Day is one week from today on Thursday, May 5th and there's still time to sign up and participate. It might seem intimidating and overwhelming to head to our nation's capitol to speak to legislators about our needs as a community, but it can be a powerful, incredible experience for those who participate. I'll be heading down to D.C. Wednesday night to join RESOLVE in advocating on the Hill for infertility awareness a week from today. I'm a newbie to Advocacy Day too, so I wanted to share one woman's story to show you that yes, someone just like you or me can participate in Advocacy Day, with no prior experience with legislators at all.

Folks, meet Susan. You may know her as Donor Diva:

She's the proud mama to a darling boy, a fellow POF-er, and a blogger just like you and me who took the leap and participated in RESOLVE's Advocacy Day in 2009. I asked Susan to talk about her experience with RESOLVE and to tell us what the day was like.

Why did you decide to participate in Advocacy Day? 
My friend and I were both in the middle of our 2ww after our DE cycles. She suggested that we go down to DC for advocacy as a distraction. I live in Maryland so it was easy to get there.

How were you feeling about the day leading up to it? 
I was most nervous about talking with the Congressman and Senators. I was most excited about helping the infertility community. There are so many people in the infertility community that helped me I wanted to help also. RESOLVE provides you with support beforehand. They did a conference call, had papers for you to read through, and did training the morning before meetings. As long as you do your prep you will be ready to go.

Tell us what the Advocacy Day itself was like.  
My friends and I Metro-ed down to DC (we live in MD). When we arrived, we were greeted by many smiling faces. The first part of the morning was spent prepping us for our meetings and also hearing stories about peoples' journeys through infertility.

For me, the meetings were in a great progression. It started off with a big group and my last meeting was just me and one other person. It gave me a chance to warm up and gradually feel more confident. It was very exhilarating to actually speak to the Aides and have them understand our position.

It was hard for me to stay calm since this was the first time for me to do something like this. What helped was knowing that I wasn't the only one meeting with them. Also, you aren't meeting with the actually congressman/women or senator you are meeting with their aid. Also, that we were doing this for a great cause. My proudest moment was talking with other participants of advocacy day.

At the end of the day, how did you feel? 
Exhausted!

Any advice you would give to folks going to DC for the first time this year? 
Prepare yourself and read EVERYTHING that RESOLVE provides you with. This way you will be confident in all of you meetings. If you are passionate about infertility then you should go. There were several states not represented when I went and the only way we are going to make change is by getting as many people as possible involved.

Thanks Susan, for sharing your story. I hope your positive experience will inspire others to follow in your footsteps and continue the grassroots advocacy work for the infertility community on Capitol Hill. I know it's certainly made me very excited to take part a week from today!

Worried about making it down to DC? No problem! RESOLVE can prepare you to talk with your local legislators in your own home districts. I wanted to give a special shout-out to Whitney, who had an amazing experience this week meeting with legislators in her home state. Not only did she meet with her legislators, give them plenty of facts, but she actually got their support to co-sponsor a forthcoming infertility tax credit bill. Another real person, another blogger just like you and me - and she's advocated in a huge way for our community.

It is especially critical for constituents from the following states to attend, as you would meet with key members of Congress who could help us in getting the infertility tax credit bill to succeed:

• California
• Delaware
• Illinois
• Maine
• Minnesota
• New Jersey
• New York
• Pennsylvania
• Washington

Have you participated in Advocacy Day before? Sound off in the comments and share your experience with us!

If you still have questions about the day and how you can participate, what to expect - even what to wear - check out the comprehensive Advocacy Day FAQ online.

Will you join me in DC this year for Advocacy Day? 

Infertility and Raising Awareness

We are more than our infertility. 

When we think of infertility, sometimes we think about all the things it has taken away from us: our fertility, our sense of control in our lives and of our bodies, sometimes even our hopes and plans. Infertility can make us weary, stressed, sad, numb, frustrated, jaded, angry, confused, scared, restless... the list goes on. For some, infertility leaves a sense of emptiness inside them. For others, infertility is less a sense of emptiness but more of a constant reminder that shadows them wherever they go.

I have said this on multiple occasions and I'll say it again: we are more than our infertility.

Often, when I speak of my own infertility journey, I start with saying "Infertility has robbed us of the chance to build our family the old-fashioned way." It's true. That chance was in fact stolen from me. Yet it hasn't left me empty, even if at first it felt that way. And I don't feel like infertility is chasing on my heels, a shadow I can't escape, rather, it's colored my vision and the way I look at the world. Infertility has changed me as a person, but I am not defined by my infertility.

I think this is due largely to my involvement with RESOLVE, particularly with advocacy and raising awareness. I've written before that I fit very much the definition of a wounded healer, that from my place of pain I am able to turn around and help others. A lot of this is probably personality but I think a good portion of this is simply part of my healing process. And I won’t lie: it kills the time while we wait to begin our own family building process.

Raising awareness and advocating for infertility treatment, coverage, and research has given me back a lot of the things that felt taken from me. I feel like I’ve regained a sense of control and that I’m engaged in meaningful, purpose-driven work. A couple of weeks ago, I was telling my husband how I was sorry I’m not the same woman he married three years ago. “Infertility has made me a different woman,” I said.

“It’s true. You’ve changed,” he said, without hesitation. I turned to look at him. “But you’re a stronger woman because of it.”

I carried a lot of shame for that first year after my diagnosis. After creating my video for National Infertility Awareness Week last year, it was as if that veil of embarrassment and guilt was lifted from me. I spoke with confidence: “My name is Keiko Zoll, I’m 26 years old, happily married, and living with infertility.” That confidence has only grown and yes, I am a different person – a stronger, more passionate person who’s ready to take on the challenges facing our community and advocate for change.

I know advocacy isn’t for everyone, but I can’t deny how much of a positive impact is has not only made on our journey, but in my life.

There are two ways you can raise awareness and advocate for change coming up in the next two months. One requires very active, direct interactions with legislators while the other can be more passive, from the comfort of your favorite blogging platform.

Less than a month from today, RESOLVE is sponsoring National Infertility Awareness Week 2011, from April 24 – 30th. There are a variety of events happening around the country, and you can host your own event too. Or, if you’d like a more passive approach, check out this year’s Bust a Myth Infertility Blog Challenge. Pick an infertility myth and blog about it – it’s that simple! All entries will then be eligible for RESOLVE Hope Award for Best Blog at their annual Night of Hope Awards.

With all of the misinformation and misunderstanding about infertility out there, this is a perfect opportunity to raise awareness and pave the way for change. You might even use it as an opportunity to “out” yourself to others- daunting and not for everyone, I know – but still a perfect chance to show people how 1 in 8 is not only someone they know, but someone just like you.

If you’re feeling particularly inspired and fired up, you can also participate in RESOLVE’s Advocacy Day on Thursday, May 5th. With RESOLVE’s training and guidance, you can meet with legislators on Capitol Hill to speak about why Congress needs to care about infertility and to legislate wisely when it comes to reproductive healthcare and mandated healthcare coverage. Can’t make it to Washington D.C.? No problem! RESOLVE will help set up appointments for you with legislators in your state and local districts.

I realize how intimidating this might sound, but others just like you have done it (Stirrup Queen, Body Diaries by Lucy, and A Little Pregnant, to name a few) and after the initial jitters, feel exhilarated at having taken such a bold step in infertility advocacy. To quote the ever fabulous Julie over at A Little Pregnant, "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." How is that not inspiring to get involved?

I’m planning to go to Advocacy Day myself this year for the first time. I can’t make it to D.C., but I can certainly take a day off of work to meet with legislators here in Mass. and thank them for their support and provide them with further education. Honestly, it’s the least I can do for having the privilege to live in state with mandated coverage.

Infertility and raising awareness, advocating for change: it’s good for the soul. It feeds us with passion and purpose. We regain some of that control we’ve lost. We see our infertility less as a limit of who we could have been and more of an opportunity of what we can become and the change we can make in the world. Raising awareness and advocating for change helps to support our infertility brothers and sisters-in-arms.

In the end, we come out stronger because of it.

---

This post is part of About.com’s Health Channel Fertility Blog Carnival hosted by Rachel Gurevich, author of infertility.about.com.

4 Myths Debunked About Mandated Infertility Coverage

As I mentioned last week, Maine could potentially become the sixteenth state to mandate insurers to cover infertility treatments. The bill, LD 720, will be heard before the Joint Committee for Insurance and Financial Services at the Maine State House (room 220) in Augusta at 1pm today. There will be time for brief testimony to be shared with the committee. If you live in Maine and you've got the time- please make it to the State House today. Your support is vital for this bill to gain any continuing momentum in the Maine legislature. Complete details regarding this bill and the public hearing today can be found on RESOLVE of New England's Maine Advocacy Alert page.

Believe me when I say your support is critical; there is already a lot of opposition for this bill. Just ask Anne Beldon, a devoted RNE volunteer up in Maine who sent in an excellent Letter to the Editor of the Bangor Daily News. Some of the reader comments, aside from being quite misinformed, are downright cruel. It is a stark reminder of just how lucky I am to live in Massachusetts, where we lead the nation in mandated coverage.

Some of the biggest complaints from commenters were that they shouldn't have to pay for the lifestyle choices of others and that overpopulation is a global problem, so perhaps infertile people should take the hint. Oh, and have you considered adoption?

*facedesk*

I almost don't know where to begin.

Let's start by addressing four of the myths about mandated infertility coverage we hear all the time (as reflected in the reader comments to Anne's letter) about why infertility treatment shouldn't be covered.

Myth #1: Infertility isn't a disease; it's a lifestyle choice.

Reality: The World Health Organization would beg to differ. The inability to conceive or carry a pregnancy to term is a medical condition, not a choice.

Myth #:2 I shouldn't have to pay for someone's expensive, elective IVF treatment.

Reality: IVF accounts for less than 3% of all infertility treatment, according to the American Society for Reproductive Medicine. ASRM also states that IVF accounts for 0.07% of U.S. health care costs (Source, ASRM). In fact, infertility is a treatable disease, so it makes sense that insurers provide coverage for its treatment.

Myth #3: Providing infertility coverage will drive up everyone's premiums.
Reality: Employers who provide infertility coverage can see as much as $1 per member per month in premium reductions (Source, American Journal of Obstetrics and Gynecology). And take a look at what happened in Massachusetts: infertility expenditures made up less than 1% (0.81%, specifically) of all insurance expenditures in 1986, a year before the mandate was made into law. Less than 10 years after the mandate was in place, infertility expenditures as a percentage of total expenditures actually decreased to nearly haf that number, at 0.41% (Source, Fertility and Sterility, 1998).

Myth #4: The world is overpopulated. Why don't you just adopt?
Reality: The first issue is that you attempt to deflect the issue at hand by making "overpopulation" the focus of your rebuttal; this is commonly known as a straw man argument. But I'll bite and turn this question back to the reader. Why don't you just adopt? Why must adoption fall solely in the arms of the infertile? Instead of having your own biological children and thus contributing to overpopulation as you claim, why not adopt yourself?

5 points to remember when responding to the infertility coverage critics out there:

1. Educate yourself. People will want sources. (I've provided them all here.)
2. Don't feed the trolls. They're a hungry lot, and it's easy to fall into their traps.
3. Pick your battles. You can't win over everyone.
4. Agree to disagree; like the point above, you can't change all hearts and minds.
5. Don't lose sight of the bigger picture and keep fighting the fight!

That last one is important. It's easy to get bogged down in trying to respond to every thoughtless, ignorant comment, to try and make each of your comments a teachable moment. In reality, the bigger issue at hand - getting mandated infertility coverage - is the goal. You can't lose sight of the forest for the trees.  Stay tuned for my post about Infertility and Raising Awareness, where you can find out more about how to be your own infertility advocate.

What are some of the comments you've come across, either in person on as a response to a blog post or article, and how did you respond?

Possible Infertility Coverage Mandate Coming to Maine

Background photo by Justin Russell via Flickr.

Mainers: I don't want to get your hopes up, but there is some seriously big, exciting news coming to your neck of the woods:

Representative Gary Knight has sponsored a bill that seeks to mandate insurance coverage for infertility patients in the state of Maine. I told you: big, exciting news. You can read the full text of the proposed legislation for LD 720 here. What's particularly awesome? Rep. Knight is a Republican. So is his co-sponsor, Assistant Majority Whip, Rep. Andre E. Cushing III. Gentlemen, I applaud you for bucking an otherwise disturbing trend by some of your Republican colleagues in other states. This is the kind of progressive, supportive legislation we'd like to see more of from your party.

Even bigger news? The Maine legislature has put LD 720 on the hearing docket a week from today. The public hearing is Wednesday, March 23 at 1:00pm in room 220 at the Maine State House. Time will be allotted for brief, personal testimony. If this bill is going to get any kind of support from the rest of the Maine legislature, it is critical that at least 20-30 people show up to this public hearing.

Do you live in Maine? Do you know a Mainer struggling with infertility? Please share this post with them and encourage them to attend and if comfortable, to share their stories with legislators! Sharing your stories of what this kind of insurance coverage could mean to you personally can be the tipping point for an infertility mandate's success. Trust me: it's what won over Massachussetts legislators in 1987 when the infertility mandate was first made into law here. The way has been paved - it's up to Mainers to continue the legacy of 15 other states that have mandated infertility coverage.

Ah, but there's always a catch.

It should be very important to note that there are two controversial provisions within LD 720 as it is currently written:

1. Coverage would only be extended to married couples; and
2. Coverage would be denied if an infertility diagnosis was the result of an STI.

RESOLVE of New England does not fully support the bill as written, however, it is important to build momentum for the bill as it is my understanding that Rep. Knight would seek amendments to the bill to remove these two controversial provisions.

How can you help spread the word and show support for mandated infertility coverage in Maine?

1. Direct your Mainer friends and bloggers over to this post: Public hearing next week on proposed infertility mandate in Maine
2. Tweet about the hearing date and time, like this: "Attn Maine: do u want #infertility coverage mandated in ur state? Tell ur legislators on Wed 3/23 at 1pm! Details here: http://exm.nr/hSlPbs"
3. Do you live in Maine? Can you get to the State House next Wednesday at 1pm? Awesome - do it!
4. Blog about it, post about it on Facebook - spread the news and share with others!

How awesome would it be if Maine could become the 16th state to mandate coverage? Maine: you could be a part of history.

Let's get crackin' readers and spread the word!

The War on Women Has Got to Stop

It started with the hives. At first I thought it was the cats. They'd climb all over me and within minutes, the itching would begin. But then I started getting them at work, I just figured it was cat hair on my clothes or something, not realizing that they almost always coincided with anytime I was reading the news. Then this week on my drive into work, I was listening to the news as usual and a politician of a right-leaning nature said something profoundly dumb and my neck started to itch. In a matter of minutes, my neck was covered in hives. I realized that no, this wasn't the cats.

I've been getting physically ill from the news.

If it isn't the madness in Wisconsin, it's that Qaddafi is bombing his own people from the air. Oh, and then I stumble upon this gem:

Indiana Bill Would Force Doctors To Tell Women That Having An Abortion May Lead To Breast Cancer (source).

No, it's cool. I'll wait for you to clean up your spit-take. It took me a minute when I read that, too. Here's the quick rundown (emphasis mine):

House Bill 1210, introduced by Indiana state Rep. Eric Turner (R), would... require physicians to inform a pregnant woman seeking an abortion that the fetus could feel pain and require patients to view an ultrasound. A patient could get out of doing so only if she stated her refusal in writing. But one of the most controversial portions of the bill is the part that would require doctors to inform women about the risks of abortion, including "the possibility of increased risk of breast cancer following an induced abortion and the natural protective effect of a completed pregnancy in avoiding breast cancer."

The American Cancer Society (ACS) and other major health organizations, however, have rejected this theory. In February 2003, the U.S. National Cancer Institute brought together "more than 100 of the world's leading experts who study pregnancy and breast cancer risk." They found that neither induced nor spontaneous abortions lead to an increase in breast cancer risk. In fact, the risk is actually increased for a short period after a woman carries a pregnancy to full term (i.e., gives birth to a child).

. . .

I may have mentioned on here that it feels like the government is out to get women. I have been hesitant to start delving into politics on this blog, but folks... I'm getting hives I've been getting so stressed out about this. Infertility has made me feel powerless in some ways, but the stuff I'm hearing about on the news lately has made me feel powerless in much bigger, scarier ways.

After reading this latest article and learning that this new piece of legislation was introduced by a Republican (SHOCKER), I need to get on my political soapbox.

Ladies, and the gents who support the ladies in their lives: there is a Republican-led war on women happening right now. I've been trying to dance around this as much as possible both here and on FB and Twitter, but I just can't anymore. Where are the Dems proposing this kind of legislation? Oh right- they're too busy focusing on trying to get the Federal budget passed and maybe create some jobs for everyone.

I get it. I get that people were frustrated around midterm elections in 2010, so everyone voted in all these little whippersnapper Tea Party Republicans, like a breath of fresh air in a stale room. And now it's like the joke is on America, and more specifically, American women. With wave after wave of anti-choice, anti-woman legislation, I feel like everyone is finally starting to see this new Republican party's true colors... and they are ugly, ugly colors.

Reader Sonja sent me an article that sums it all up rather nicely with some rather convincing arguments. As terrifying as the implications in the article are, it's nice to know that I'm not losing my effing mind, that this isn't all just in my head: Female Sexuality Still Terrifying to Conservative Lawmakers (source).

. . .

I need to bring this back 'round to why on earth this all should matter to you, why it should matter to the infertility community. Like I said in my last post about anti-woman legislation, we must start fighting back as a unified community of women or we are going to get trampled by the cultural norming of misogyny in America. So why should this matter to us infertile folk?

Think about it like this: is this the kind of America in which you want to raise your kids for whom you've so desperately longed? The kind of America that wants to treat women with recurrent miscarriages as criminals worthy of death row?

Or how about the kind of America that blames an 11-year-old girl for her own gangrape by 18 men? Yeah, spit-take on that one, too. I actually gagged when I read about that this morning. Do you see why I might start breaking out in hives reading this garbage?

This is not my America. This will not be my neice's America. And this will not be my children's America. I have had enough. The War on Women has got to stop.

And if it persists, then we must fight back. We need to educate ourselves and stop putting our heads in the sand or turning off the news when it gets too much to bear. Believe me, I know how easy it is to think about nothing other than, "When am I ever going to have children? Will I ever be able to have children?" but we've got to think about the world we hope to shape for our children one day.

Besides educating ourselves, we need to come out in huge numbers. There is nothing more powerful than an educated mass of people. We need men to stand with us. We need to be writing about this on our blogs, posting articles and resources on Facebook and Twitter, and talking about this with the women and men in our lives. We have to become a chorus of so many people shouting so loudly from so many places there's no possible way they can ignore us.

. . .

I'll be honest. I don't really have all the answers on what we can do. But I'll keep writing and talking about this. I hope I don't lose some of you along the way because of political differences because the case I'm trying to make is that regardless of where you stand politically, this kind of legislation can and will impact our access to infertility care. I fear it's a short leap from preserving fetal rights to denying infertility treatment coverage. It becomes not just a discourse on having children, but who deserves to have children at all.

Please tell me this isn't all just in my head and that I'm not getting hives because I'm crazy. Please tell me that there are others of you out there who have felt like I do and have had enough of it all. And if you think I'm wrong, tell me why- give me sources, facts, figures.

Because seriously? They don't make enough Benedryl for these stress hives I've been getting.

Boston Walk for Choice

I know I've been talking a lot about anti-reproductive legislation lately, but I wanted to share a short video recap I made of Saturday's Walk for Choice in Boston. Dozens of cities participated (internationally as well), and I was lucky enough to participate, carrying my signs in the cold, walking in solidarity with other men and women who recognized that yes, we need to care about all this craptacular legislation out there.

Awesome moments of the day:

+ On a very crowded train to downtown, a young woman sitting across from me read one side of my sign (Infertile Woman for Choice), made eye contact with me, smiled, and made a little heart symbol with her hands.

+ Marching through Downtown Crossing, our chants echoing off the tall buildings around us, cars honking in support, people stopping to read our signs.

+ Marching through Boston Common, people lined up along us, reading our signs, clapping and cheering in solidarity. I found that particularly emotional.

+ Several hundred people calling Senator Scott Brown's office at the same time, leaving messages urging him to vote against a Senate bill to defund Planned Parenthood.

+ The many, many witty signs.

It was a great day. For more recaps, check out the Boston Walk for Choice Tumblr, as well as the main Walk for Choice Tumblr with photos and video from cities around the world who participated on Saturday.

Boston Walk for Choice 2011 from Keiko Zoll on Vimeo.

I Stand with Planned Parenthood.

This post is part of Fair and Feminist's I Stand with Planned Parenthood Blog Carnival. Check out the other participating blogs today and lend your support.

http://www.plannedparenthood.org/

I stand with Planned Parenthood for a lot of reasons. I can think of the most recent, when, of all things, Larry and I feared I might actually be pregnant, in late November of 2008. Let's just break that down for a second: I feared I was pregnant. We were newlyweds, coming up on our first wedding anniversary in just over a month. Even though we had talked about how abortion wasn't necessarily the gut reaction now that we were married, we both agreed that timing was not good. (In hindsight, it's almost laughable. We couldn't get pregnant then even if we wanted to, but I digress.)

I had been lazy with my pill. I skipped something like, 11 days' worth? Yeah, not good. There was a fair amount of horizontal mambo-ing in that stretch of no birth control (remember: newlyweds), I hadn't gotten my period, and I panicked. I took a pee stick test and thankfully it came out negative, but I realized that with our timing it was possible I could have been chemically pregnant, so I turned to Planned Parenthood for emergency contraception, to prevent implantation.

Larry and I talked a lot in the day leading up to getting the EC and me taking it. How weirdly, when actually confronted with the possibility that I could be pregnant, that all of those years of being a pro-choice feminist in college seemed strange and foreign. "What if I was?" I thought. If the EC didn't work, we'd resolved ourselves to the idea of being parents way before we wanted to. I am grateful that I live at a time when I have the freedom to make that choice. It was the first time I realized what pro-choice actually meant. It's not about being pro-abortions for all: it's about being pro-the freedom to have control over your own body.

And that folks, is why I stand with Planned Parenthood. Not because I was able to get EC when I needed it, rather because they are an organization that helps people (not just women) get the reproductive care they need when they need it.

When I wrote Wednesday about the war on women and what it means for the infertility community, I was so grateful for the outpouring of support for Planned Parenthood in the comments here, on FB, Twitter, and elsewhere. I want to share some of those reasons why Planned Parenthood is important to the infertility community, and why the House vote to defund Planned Parenthood is a slap in the face to all of us.

Planned Parenthood is not just about abortions, it's about access to low-cost, routine medical care.

A dear friend Nine writes:

When I was young and had no access to health care, I used Planned Parenthood's services for my annual exams and to receive medication to help me with debilitating menstrual cramps. Because I had no primary physician, they were also kind enough to keep an eye on my heart and lungs for me.

Another dear friend Marie-Audrey echoes this and expands on the breadth of coverage Planned Parenthood provides:

They provide care for women (and men) without health insurance - which I did not have a few years ago. I had very little money and their "pay according to your income" allowed me to get the health care I needed for a very fair price... What about the teenager who does not get any kind of support (money or psychological) from home? What about the single mom with 3 kids? What about the freelancer without regular income and/or health care?

Planned Parenthood helped save MrsSpock's sister's life and keep her sister's family planning on track:

Because of her bipolar disorder- an illness she has unfailingly taken her meds for for 10 years- my sister has been denied health insurance from her employer's insurer, even though she has worked there for that same decade. She is only able to get her well woman care through Planned Parenthood, as she can pay based on a sliding scale. Her income is low, and she could not afford to pay for full fees. because of them, she was able to get the pap that caught her early cervical cancer, and get into a clinic to treat it based on their referral. Never mind that she has chosen not to have children based on her mental illness, and they give her affordable access to the contraceptives that make sure that plan remains.

Planned Parenthood has also been vital to many of your infertlity journeys.

Anonymous writes:

...did you know some Planned Parenthood centers also provide Level II infertility treatments? I know this because in the wake of my own IF diagnosis, I found myself missing the compassionate and thoughtful care I received as a PP patient. The center closest to me wasn't able to provide me with the next stage of my care but they referred me to a specialist that hopefully will help.

Virginia adds:

I always make a point of pointing out that Planned Parenthood helped us plan for and medically prepare for conceiving our daughter whenever anyone gets up on their abortion soapbox. I'm an endo sufferer and PP helped me keep my womb and tubes healthy enough to conceive naturally when we were ready for a baby. She really was a miracle - I've been dealing with secondary infertility since her birth almost 17 years ago.

If having low-cost access to basic reproductive care is something that's important for you, I urge you to take 10 minutes right now, to act and do something about this.

1. Read and sign the open letter from Planned Parenthood expressing your outrage. Time: 2 minutes.

2. Find out how your representative voted in the House vote to defund Planned Parenthood. Time: 1 minute.
+ If they voted against it, please email them and thank them. Time: 2 minutes.
+ If they voted for it, please email them and tell them what you think about that and how their vote impacts you. Time: 2 minutes.

3. Share your story about why Planned Parenthood matters to you. You can share it with Planned Parenthood directly, or you can blog about it. Make it your Facebook status or find eloquence in 140 characters or less on Twitter. Time: 4 minutes (maybe less).

4. If you have the means- even $5- make a donation to Planned Parenthood to show your support. Time: 1 minute.

Tada! 10 minutes, maybe less. See, grassroots advocacy is seriously not that hard or time-consuming, I promise.

I know in the infertility community, we think a lot about our future children. We hope, we pray, we wish, we dream for our future children. I'm asking you to think about them again, right now - is a country that's willing to strip away access to basic reproductive care one in which you want your kids to live? Do you want your children to go through the same fertility struggles you're going through right now because they couldn't get the kind of low-cost reproductive care they needed in their teens and college years?

I know sometimes it can be hard to see beyond the immediate hurdle of just trying to build your family, but we need to take active steps in shaping the world in which they'll live.

I'm not just doing it for myself, but for my kids - one day, should we be so blessed. That's why I stand with Planned Parenthood.

Will you?

Why does the government hate women so much?

Hi. Did you at one time or do you currently have one of these?

Adorbs, right? Buy it here.

Oh, you don't? 



From left: Rep. Phil Jensen (R-SD), Rep. Chris Smith (R-NJ), Rep. Bobby Franklin (R-GA).

Then please stop trying to govern mine.

If you have lady bits or know someone who does, you should really become familiar with these faces. They're out for your lady bits. No no no, not in that way - in the "restrictive legislation that they really have no business putting forth" kind of way.

I don't care if you're pro-choice, pro-life, pro-family, or pro-whatever: I need to talk about this because it's been eating away at me for almost a week. In fact, I shelved a post I wrote sometime last year when we were knee-deep in our "let's adopt!" phase. It contained a rather inflammatory sentence that basically said, despite my years of being pro-choice/pro-family, every abortion is a missed adoption opportunity. I know - I know - that's why I never posted it here. Too inflammatory even for me and I didn't want to deal with the aftermath in the comments. So... yeah, don't kill me on that one.

Here's the thing: infertility patients need to pay attention to healthcare legislation, particularly anti-abortion legislation. Anti-abortion legislation, in a cruel twist of fate, can pose a serious threat to our access to care. Here we are, trying our damndest to have our own children, and yet (I know how ironic this sounds) we need to be vigilant about others' rights and access to terminate their own pregnancies.

Case in point: Iowa's Personhood Law (HF 153). This lovely little gem seeks to define that life begins at conception thus rendering abortion illegal in the state of Iowa. Why does this matter to infertility patients? Oh, you were able to fertilize all 8 of your eggs for your IVF cycle? Congrats! Oh, some of them weren't so high grade and aren't worth saving? Tough cookies, it's now illegal to dispose of them. I've seen so many of your beautiful blasties out there and it's kind of awesome (in the truest sense of the word) to know that those little blasties are your future children - but calling it murder to get rid of them? Come on. And yet amazingly, HF 153 actually passed an Iowa House subcomittee. What boggles the mind: the bill was authored by Rep. Kim Pearson (R-IA). Kim: you've got lady bits. Use your head, woman! Even the ASRM and SART said enough was enough, and issued a public letter in opposition of the bill to Iowa House Speaker Kraig Paulsen.

[Do you live in Iowa? Does this piss you off? Please contact your representatives and tell them why this matters to you as their constituents. You can search for your Iowa legislators here online for their full contact info.]

There's a reason to speak up, contact your legislators, and blog about it: because it works. Look at South Dakota (fig 1). Their House Bill 1171, introduced by Rep. Phil Jensen (R) sought to redefine justifiable homicide:

Homicide is justifiable if committed by any person while resisting any attempt to murder such person, or to harm the unborn child of such person in a manner and to a degree likely to result in the death of the unborn child, or to commit any felony upon him or her, or upon or in any dwelling house in which such person is. (Source.)

In a nutshell, it would create legal precedent for someone to kill abortion clinic workers. Let's broaden this a bit: remember those blasties I mentioned a few paragraphs up? Let's say those low-grade blasties are discarded. According to HB 1171, it would be justifiable homicide to take out the offending embryologist who discarded them. Thankfully, the public outcry, both from South Dakotans and the blogosphere, was large enough that the language was changed and ultimately, South Dakota realized that maybe this whole thing didn't need to be brought to the table at all.

But we still have a big fight ahead of us, most notably, the most recent vote by the House to defund Planned Parenthood, spearheaded by New Jersey Rep. Chris Smith (fig 2). This is much more than just about abortion rights: now we're just talking about restricting access to basic reproductive care. Planned Parenthood does a lot more than abortions: they provide routine pap smears, access to birth control and emergency contraception, and routine care for STIs. By taking away these services, these women now have an increased risk of infertility because they won't be able to access the reproductive care they need.

And as many of you know, sometimes the decision to terminate a pregnancy is beyond our control. Enter my new hero, California Rep. Jackie Speier, who had the chuzpah to remind the House of this staggering reality late last week:



"The gentleman from New Jersey can kindly kiss my ass."
[Don't know how your Representative voted? You can check here online to see whether or not they voted to defund Planned Parenthood. Then take the time to thank those that who supported PP or speak your mind to those who did vote to defund PP.]

Have you been angered by the craptastic media coverage of infertility, IVF, donor gametes, and celebrity infertiles? You ever notice how the media likes to play the victim blame game? With all of this recent legislation, anyone else getting that vibe that there's this cultural misogyny at work here (like last week's Nir Rosen and Debbie Schlussel's *disgusting* rants blaming CBS correspondent Lara Logan for her own sexual assualt in Egypt)?

What the holy hell is everyone's problem with women just, ya know, living their own lives and having some say in what we choose to do with our bodies?

This is why we, as an infertility community, need to care about anti-abortion legislation, regardless of our own personal views. This is why we need to act, to speak up, to speak out, tell our neighbors, our friends, our families and most importantly: the people who govern, as most of them do not have uteruses (uterii?), but have an awful lot to say about what goes on in them.

Because if we don't, then we might just end up with legislation that seeks to investigate all miscarraiges, cuz yanno, to see if they were induced. Because if they were, it would be a criminal offense.

How I wish I were making this up. (I've been trying to find a less inflammatory post about it, but this one at Daily Kos hits all of the important points). Allow me to introduce you to Georgia Rep. Bobby Franklin (fig. 3) who is pushing for the following legislation:

"...any time a miscarriage occurs, whether in a hospital or without medical assistance, it must be reported and a fetal death certificate issued. If the cause of death is unknown, it must be investigated... Hospitals are required to keep records of anyone who has a spontaneous abortion and report it." (Source.)

This is the last straw. I had to write about it here because, having been invested in the stories of so many of you who have experienced a miscarriage, I just about went apoplectic when I read this on a friend's FB page. Rep. Franklin's proposed legislation would treat you like a criminal just for having miscarried. Seriously? Is this what we have come to as a nation?

We have got to wake up, start paying attention, starting making those calls and writing those letters. We need to be informed and to inform others. We have got to start fighting back as a unified community of women or we are going to get trampled by the cultural norming of misogyny in America.

MA Infertility Mandate Update Signed Into Law!

Gov. Deval Patrick signs the Infertility Mandate updates
into law on August 10, 2010. (Photo courtesy of Davina Fankhauser.)

A little late on posting about this, but a major victory was achieved in Massachusetts last Tuesday, August 10: Governor Deval Patrick signed MA S. 2585 into law. The infertility mandate language updates of S. 485 were folded into a broader healthcare bill that had both State House and Senate unanimously supported, and now the Governor has sealed the deal. The new law will go into effect 90 days from the date of signing. More details about the law and general updates on my life after the cut.

It was tense for a solid week between the passage of the bill at the State House and whether or not Gov. Patrick would sign it; it was assumed he would, but there was no guarantee and there was a tight turnaround form the last day of legislative session here in MA and the last date he could actually sign the bill. But at the eleventh hour, Gov. Patrick came through. It was one of the moments where I was really proud to be a constituent in a state where not only my concerns (and those of hundreds of others) were really heard but where our administration supports family-friendly, progressive healthcare legislation.

I have to give HUGE thanks to Davina Fankhauser and the wonderful women at RESOLVE of New England who lobbied to make this a reality, and of course to all my friends and readers and followers who contacted their legislators here in the Bay State. Nice work everyone :)

That being said... our work is not yet done. As great of a victory as getting the IF Mandate updates into law, Rebecca Lubens, Executive Director of RESOLVE of New England was quick to share two alarming pieces in the Boston Globe that ran last week. The first was an op-ed piece that was against the insurance mandate healthcare bill that Gov. Patrick just signed into law. As usual, infertility treatments were thrown under the bus as expensive, elective treatment that drives up the cost of healthcare for everyone. It's the same old (and largely incorrect) argument that our community hears all the time.

The second op-ed article specifically addressed the use of ICSI in infertility treatments, and tread dangerously close to promoting eugenics. Again, it cast a general sense that couples with IF are selfish in their desires to have children.

We may have won some victories at the MA State House, but we have a helluva battle against the media. Infertility has been assaulted by the media lately; they love to pick on us as their favorite target. We need to not only lobby our legislators, but our media outlets as well... because if we can't make a dent in this anti-infertility mediated culture war, we are going to be swallowed whole.

---

Still living between homes and up to my eyeballs in stuff with work. But, Larry put it best last night: "You seem really happy." And it's true- my job satisfaction is pretty damn high, which is a nice change. I'm feeling great about heading into this academic year. As for the house, we're supposed to close next Friday, and all of the powers that be that make this closing happen are optimistic that we will in fact close on that date. I'm practically salivating at the chance to get our stuff out of storage and into the house. Lol, it's been too long since I've seen those beautiful wide-plank pine floors :) Also, I discovered Restoration Hardware last night. That store will be my downfall... I want to furnish the entire house in nothing but their ungodly/insanely expensive furniture! (Realistically, this will never happen. I think I'll get, at most, these pillows.)

PS- there's still 2 weeks left to enter my Big IF Bloggy Giveaway!

When advocacy pays off

Photo by Keiko Zoll.

...it feels GREAT.

It's a great morning for Massachusetts. At the eleventh hour on the last day of legislative session, the Massachusetts infertility mandate update was passed favorably out of committee, and then passed the House and Senate! All we need now is Governor Patrick's signature and the update becomes law; there is no reason he wouldn't and he is expected to do so. We did it! The Massachusetts infertility mandate has not only been preserved, but updated to provide even broader standards of coverage that will help thousands of women in this state.

The updates to the law will be as follows:

"...Of the General Laws, as appearing in the 2008 Official Edition, is hereby amended by striking out the last sentence and inserting in place thereof the following 2 sentences:- For purposes of this section, ‘infertility’ shall mean the condition of an individual who is unable to conceive or produce conception during a period of 1 year if the female is age 35 or younger or during a period of 6 months if the female is over the age of 35. For purposes of meeting the criteria for infertility in this section, if a person conceives but is unable to carry that pregnancy to live birth, the period of time she attempted to conceive prior to achieving that pregnancy shall be included in the calculation of the 1 year or 6 month period, as applicable."

The loophole of continual denial of coverage for women over 35 who experience recurrent miscarriage will be closed. The Massachusetts infertility mandate, which leads the nation in its coverage, will now finally be in line with current ASRM guidelines and standards.

It took more than just our legislators to make this happen: it's folks like us all over the state who wrote emails, letters, and called their legislators. It's amazingly tireless women like Davina Fankhauser, RESOLVE of New England's Advocacy Director, who met with legislators and lobbied at the State House, who knows MA law inside and out. It's women like RESOLVE of New England's Advocacy Committee (Lee Collins, Sandy O’Keefe, Terri Davidson, and Amy Demma) who kept our members in the loop and prompted us when our action as constituents was needed. It's the friends of mine who had connections to folks on the Senate Ways and Means Committee and in the State House (shout outs to Claire and Deirdre!). And it's everyone who spread the word through Twitter, Facebook, and their blogs. Thank you, thank you, thank you to everyone that helped this important piece of legislation makes it way into law!

Change can happen when we come together as a community. And damn if it doesn't feel awesome when we do.

A Belly Full of Fire, Part Two: The Wounded Healer

This is the second post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate.

Before I get started, I need to 'fess up about something kind of embarrassing. I thought I was being wicked creative with the title of this series, A Belly Full of Fire. Turns out, as I've gone through some of my research, this title isn't nearly as original as I thought it was. I need to fully credit Karima Hijane, Carly Heyman, Maureen Bell, and Mary Beth Busby's 2008 article from the Annals of the New York Academy of Sciences, "From Fire in the Belly to a Boiling Heart: Fuel for Participatory Research." When I went to start working on this post and leafed through my research, I felt like a putz when I saw their article title. But I like it, it fits what I'm writing about, so I'm keeping it.

---

"Some women... turn their pain into a passion to help others in similar circumstances. They become what has been referred to as 'wounded healers,' who can help others heal, and help heal themselves in the process."
Source: Amber R. Cooper, A.R., Baker, V.L., Sterling, E.W., Ryan, M.E., Woodruff, T.K., and Nelson, L.M., The time is now for a new approach to primary ovarian insufficiency, Fertility and Sterility (2010), DOI:10.1016/j.fertnstert.2010.01.016.

---

A Belly Full of Fire, Part Two: The Wounded Healer

I felt robbed. Cheated. Empty.

I would revisit the email from my doctor: "[The results], if they are to be believed, indicate that premature ovarian failure is the problem, not PCOS dysfunction/follicular maturation arrest as you, I and your previous caregivers had presumed." I thought that perhaps, maybe this time when I read it, the words would miraculously transform into "Nothing's wrong."

I started this blog as a way to channel these emotions, to fill some of the void that had been etched into my psyche. I found myself compelled to educate others as I started sharing research and informational posts. I wrestled with G-d for a little while, fighting battles between the lines, wielding my typed words as weapons and my faith as a shield. And before I knew it, the end of April had arrived, bringing with it my first National Infertility Awareness Week. I had all of this pent up frustration, anger, and anxiety, its kinetic energy boring holes into my spirit. Why not channel this energy, I thought.

The first thing I did was out myself on Facebook. The message stayed up there for about three hours before I chickened out and removed it. But in those three hours, I got three messages from friends of mine I hadn't talked to in years, each saying "I understand your journey because I'm going through it too." It was reassuring in ways that my blogging had not been. So then I reposted it with a sense of purposeful confidence. This was the first time I felt oddly positive about my infertility, in that I realized it could be channeled as an educational tool for activism.

I even wrote last April:

The ol' college activist in me is feeling inspired. I think it's because by involving myself in some kind of advocacy role, I reestablish a sense of control.

I keep pinpointing my video and this year's NIAW that launched my advocacy, but looking back through my older entries, I realize it started a year prior. My repurposed energy has refueled my spirit and sustained me through the darker times.

What I've only come to understand recently is that advocacy has helped to heal me. It's not like the emotional compartmentalizing, the escapist video game sojourns, the instant gratification of buying crap I don't need, or the diversional half-assed attempts to "find a hobby" or get in shape - advocacy has been like a bowl of chicken soup. It doesn't make the cold go away, but it fulfills you, helps you get better, and it's a welcome treat anytime you get sick.

I've had the privilege of being in touch with Dr. Lawrence Nelson at the NICHD, undoubtedly the leading researcher of POF/POI in the nation. He sent me the article containing the above quote and the words "wounded healer" resonated so strongly within me. Wounded healer is such an apt description for patient activists. If you take a look at even just a handful of executive directors of major infertility organizations and companies, they each have some deeply personal connection to infertility. With the silence that surrounds infertility, it only makes sense that former patients rise up to become leaders within the field.

Whether we are lobbying on Capitol Hill or connecting with other bloggers, we are each in our own way wounded healers.

The online ALI community has truly rallied around this concept, even if we don't formally call ourselves wounded healers. Things like the LFCA, blog hops, blog awards, online forums: we celebrate and support one another, we share tips and tricks and recommend books and websites. A friend comes to us and says, "A coworker of mine just told me she's about to do her first IVF cycle. Do you mind if I give her your information?" In helping to heal others, as Cooper, et al. notes, we heal ourselves.

It's about repurposing energy. Advocacy becomes a way of transforming pain into positive action. Suddenly you're finding little victories everywhere: your parents help you out at a volunteer telethon and send your organization a check for $250 (thank you Mom and Papa!). You get asked to guest blog or become a contributor. A senator to whom you sent a semi-form letter actually writes back and responds to your concerns, or their staffer calls you back when you leave a message to let you know that yes, your concerns will be passed on to the senator. An letter-writing campaign that you were a part of produces desired outcomes. These little victories add fuel to your reserves.

Are they an equivalent check and balance for a loss or a negative beta? Of course not. But at least you're not running on empty. And you use up that fuel to propel you forward, to keep you going.

I'll speak plainly: advocacy has saved my life. I don't walk around feeling so effing empty. I sat myself down and told myself if I can't create life, I can at least create purposeful living.

. . . . .

Today I wrote about advocacy as a way of personal healing. Take this weekend and invest in a little healing of your own. Come back Monday when I'll talk about how you can figure out what advocacy style best suits you.

Stay tuned for A Belly Full of Fire, Part Three: Which Direction Do We Swim?.

Photo by Clay Junell via Flickr.