Life Before and After Infertility

Mel has a great post this week busting a myth about infertility, about crossing the divide between those who have and those who have not yet resolved their infertility. It's a brilliant post and she describes how we often can mark the moment at which our lives changed forever:

Because for many people, infertility doesn’t have an expiration date.  It doesn’t have an end point.  It is so huge, so emotional, so life-changing that it becomes an event — a divide in a life and the way we count years — the moment before the diagnosis and the moment after.  BD and AD. 

Mel's post got me thinking and I blurted out the following on Twitter yesterday:

I really do believe this. There is a clear cut line in my life experience where before March 18, 2009 I was one version of Keiko and all the days since I am now a different version of myself. While initially I would not have considered myself a stronger person: the depression, the grief, the anger - over time, I've come to a place of strength. I think of lot of that has come from forcing myself to really confront the bevy of emotions, to own those emotions and to self-validate.

It's okay if I'm having a tough time with this, I told myself. This is a pretty devastating ordeal so yeah, I have a right to be upset and grieve.

Infertility isn't the singular experience that has changed me. It's certainly a defining moment in my life, but I am not defined by it. In growing up to be the person I am, I have gone through multiple Before and After versions of myself. Before college I was a selfish spazzy teen with wild hormones who was convinced she'd be a high school music teacher by day, opera star by night. After college I had mellowed out and become highly self-aware and discovered a wealth of value to be found in the field of student affairs.

Before marriage I was a selfish partner who fought dirty and was pretty damn needy. After marriage, I made a commitment to consider my husband a true partner and equal, to agree to sit down and really talk instead of ignoring the issues, and to compromise.

Before infertility, I knew that I might have a hard time conceiving but that it would still happen and that a few years into our marriage, we'd have a little mini-version of Keiko and Larry running around. Before infertility, the idea of parenthood seemed so casual and natural. Before infertility, I thought I'd eventually be the Dean of a college.

After infertility, all of that changed. After infertility I'm still coming to terms with the fact that I am not able to create a genetic child that is both mine and Larry's. Biologically it will be, but not genetically. After infertility, the pressure to build our family and do it soon is almost overwhelming. What once felt so casual now seems like a crazed mission. After infertility, I am committed to serving this patient community in any way I can and want to turn my passion into a career in this field.

Before infertility, I took advantage of my ability to cope, heal, and be strong. After infertility, I have no doubt in those abilities.

And that's why I wouldn't take my infertility back, no matter how devastating this experience has been. Like all these Before and After moments in my life, I have learned and grown from each experience. I'm still learning and growing, who am I kidding; I certainly don't have all the answers and I'm hardly 100% after my infertility. We're still in the middle of it all. But I've developed a level of pragmatic hope and optimism that I didn't really have before I was diagosed. So yeah, if I could go back in time and wave a magic wand... I wouldn't change or take away my experience with infertility.

That said, I know not everyone is in the same place, as Twitter follower Jen pointed out yesterday:

Jen's right too. Infertility is a journey, a spectrum of experiences and emotions. Some days I feel great, like I can take on the world. Other days, I'd rather just stay in bed thankyouverymuch. I know some of you reading this, if you could, would make your infertility vanish from your life's landscape. And I don't blame you. Infertility sucks.

But I'd like to think that the experience teaches us things about ourselves we wouldn't have otherwise learned: that we may be shocked at how jealous we could become, that we may be humbled to see how we've pulled through our darkest hours, that we may be comforted to know that hope lies within us after all.

Bust An Infertility Myth: I Am Not A Broken Woman.

In retrospect, it was fitting that my last performance in The Vagina Monologues was reading "I Was There in the Room." It's a haunting, reverant, glorious monologue from Eve Ensler's perspective of watching her adopted son's child being born. She is present in the physical moment, in the space itself, but Eve is not the one birthing another. It's a noticable void in The Vagina Monologues: there's no monologue describing birth from a birthing mother's perspective. Just Eve's voice as the outside observer.

I often wonder if I will always be a kind of woman who is only there in the room: always observing, but never experiencing the moment myself.

. . .

When I was 18, I had my ovary removed in emergency surgery. Assured that my fertility would endure, I still felt like I was somehow broken. I had written a poem at the time about feeling like a tree with a broken branch.

. . .

She is a Tree of Life to those who take hold of her; those who hold her fast will be blessed. (Proverbs 3:18)

. . .

The Vagina Monologues were instrumental in my healing process back in college. They allowed me to shape and define my womanhood, a blossoming young adult woman myself. Performing three years in a row, the show gave me a space to take pride in my womanhood: to celebrate, cherish, and worship it. I performed another two times while working for another college; my final performance a visceral, but beautiful observation of the birthing process. It felt good to perform that monologue.

All this time, my soulmate was at my side. We celebrated, cherished, and worshipped each other. I knew we'd get married. I knew we'd have children together. This is just how it was supposed to be. And we did get married. We talked over our plans and agreed on May 2011: we'd begin our family. We'd give ourselves three years just as two, to grow to three (or more!) after that time.

I was worried about being down one ovary but remembered the assurance from my doctor from many years before: "You'll still be able to have children."

. . .

We had only been married a year and my puzzling symptoms at 26 simply didn't make any sense. In March of 2009, everything changed: premature ovarian failure.

In an instant, "the way things were supposed to be" was robbed from me. From us.

"I have failed you as your wife, as your soulmate, as a woman," I sobbed.

He held my face in his hands, looked me straight in the eye: "You are no less woman to me. You have failed no one. You're my wife and my soulmate and I love you."

"But I'm broken," I said in a voice, barely audible.

"No Keiko: you are not broken, I promise," Larry assured me. "We'll get through this."

. . .

Those years in college and in the years following, I took great pride and joy in being a woman. Sure, I griped about my monthly cycle: the cramps, the bleeding, the mood swings. But I still valued the work that my body was doing (or so I assumed at the time). I knew I was merely paving the way for my body's greatest test, and I would celebrate that too when the time came.

My body, my woman's body: a holy vessel of creation, power, life.

. . .

My infertility tried to rob me of that power. When I was diagnosed, I felt like Someone had taken a giant hammer and smashed my holy vessel to pieces. I am a broken woman, I would tell myself. I wove myself a blanket of shame and guilt.

Those days were the darkest, the days I felt robbed of all that I had celebrated and cherished about being a woman.

This was the myth I told myself.

. . .

In the past year, my voice has gained confidence, strength, and hope:

I am not a broken woman.

I am NOT a broken woman.

. . .

It's not that I think women should be baby-factories, let me be clear. Rather, I see the acts of conception, pregnancy, birth, and motherhood as sacred gifts in the womanhood experience. Our bodies then, are truly vessels of creative - in the truest sense of the word - power.

Yet my womb lies barren. My tree bears no fruit of its own. I am endlessly blessed to live in an age of modern science, where my womb can be made full with the help of a selfless other, a lab, and a little luck. There is no guarantee, but it's the chance I'm willing to take.

And if we can't conceive with help, then we are just as open to adoption. Motherhood without its traditional preceding acts is no less sacred; to parent is no less a gift.

. . .

So when I look at the past two years, at the vastness of what has felt like a decade but has only been just two years - I've come a long way. Each month at the Red Tent Temple, I remind myself and am reminded of all the joyous ways of being a woman in all stages. I leave my titles at the door: Barren. Childless. Infertile. Broken.

And I choose not to collect those titles when I leave.

I am not a broken woman.

I invite you to shed this myth with me. To bury this myth, to banish it from your mental vocabulary, to cast it out from your hearts. Say with me now:

I am not a broken woman.

I am NOT a broken woman.

Now keep saying this - out loud - with me:

I am strong and beautiful. 

I am a force to be reckoned with. 

I am wise and joyous and whole in spirit and grace. 

My infertility is only one facet of the many parts of who I am and I am not a broken woman.

I am not a broken woman and I have yet so many wondrous gifts to share with this world.

My Woman's Work has only just begun.

---

It's National Infertility Awareness Week. Infertility affects 1 out of every 8 couples... like me. Find out how you can participate and provide support to 7.3 million people living with this disease: www.resolve.org/takecharge. This post is part of the Bust a Myth Bloggers Unite project.

What I Learned from PETA & Why This Mattered

What a week folks, what a week.

It's official: all references to NIAW have been removed from the PETA website, including on that directing Features page that would take you to the contest page itself. Again: thanks, PETA - much appreciated.

I've had some time now to finally get some sleep, step back from Twitter for more than 20 minutes at a time, and really reflect on everything that's happened. Some people supported our efforts wholeheartedly (63 of you joined me in openly condemning PETA through blog posts). Some people didn't think that, of all the battles we face as a community, this was the battle to pick. Some folks remained silent by choice- for a variety of reasons, and many reasons I can respect and support. And some probably still don't even know anything happened at all last week. In the grand scheme of the looming government shutdown, discord in Libya, and mounting concerns at the Fukushima reactor in Sendai, Japan - I can see how some riled-up infertile folks yelling at PETA might seem like small potatoes in comparison.

As an infertile woman, especially the days where I've got baby on the brain pretty bad, I have to remind myself to keep my infertility in check, or rather, to keep my perspective in check. There are bigger things in the world than whether or not I want or am able to have children. I get that, but sometimes I don't always remember this when I all can think of is "When's it going to be our turn already?" So I challenge myself to keep it all in context.

So, after all of this, allow me to share What I've Learned and Why This Mattered.

What I Learned from Standing Up to PETA:

Take the high road when you're trying to argue a point.
It is so tempting and quite easy to resort to name-calling. Like I said, PETA is an Internet Troll with whom to be reckoned. It's so easy to fall into the trap of hurling insults and low-blow moves; after all, was not their campaign an insult and low-blow to us in the first place? To quote the ever famous Calvin, of Calvin & Hobbes: "Nothing helps a bad mood like spreading it around." It feels good to engage in some verbal mud-slinging.

I could have easily written a letter that said, "Fuck you, PETA!" That's certainly how I felt. Instead, I took the time to process through my gut emotional response to deliver a clear and (relatively) concise argument: "Dear PETA: here's why your campaign is not cool and here's what we'd like you to do about it." When all you're doing is throwing mud around, you still just end up covered in shit. And I don't know about you, but I hate doing laundry. I also want to add: be gracious. PETA didn't have to do anything at all, but they did, so it's only right (and polite) to say thank you.

Don't give up.
I'm a figher by nature. I fight for and within this community because others can't or won't for whatever reasons. I'm able to do so because I am infinitely lucky to have the support that I do; I know many others in my shoes who don't have the kind of support systems Larry and I have. I also know some people are just tired of fighting, and I don't blame them. I suppose it's just a personality trait for for me: I'm a passionate person. I give myself fully to the things and people about which I am passionate. Some people (my husband, my parents) might say I'm a woman who simply doesn't take "No" for an answer.

When emails didn't seem to be making an impact, I turned to the blogging community. When additional emails and posts from folks in the community didn't work, I took to Twitter. When Twitter didn't work, I started a petition. When the petition gained momentum, I approached the media. I turned to my colleagues in this field for help in not only lending their support, but spreading the word. One drop in the lake became a ripple effect in the community... and it worked.

Why It Mattered:

Every battle in this community is important, whether it's telling off the media, telling off PETA, or telling off our legislators. But it's not just about raising our voices in anger - it's about raising our voices in informed civil discourse. We don't have to shout to get our point across; we can speak clearly, intelligibly, and respectfully. When we organize ourselves and our voices into a coherent, passionate message, the effect is profound.

As a community, we were heard.
We were heard when so often we are not: when we disclose to others we're seeking IVF and we get the instant response comparing us to Octomom; when infertility is still up in the air as an essential benefit; when the media asks Giuliana Rancic if she's considered adoption immediately after her miscarriage; when people ask prospective adoptive parents if they're worried about whether or not they'll feel like their "real" chidlren; when the voice of the childfree, the of color, and the LGBT are lost in the greater conversation about infertility but whose experiences are just as valid and relative to ours. It was pretty hard to ignore us because we came out in such force.

As a community, we needed this.
In a patient community where we're already beaten down from tests, insenstive comments, BFN's, fall-throughs: this was a huge confidence booster. So often we don't feel like we have any control of our lives or our bodies, and yet here is an example of making a concious decision to stand up and fight back, to take control over how an organization chooses to exploit our community: and we did it. We regained a little bit of that sense of control that we lost. We gained back some of the confidence that may have been taken away from us. It felt good. And feeling good is something we always need as a community.

As a community, this inspired us to act.
I am still amazed at how many people chose to participate in some way, from as simple as sharing links on Facebook to writing letters of their own. To every person who signed the petition, I hope you'll write your legislators. For every person who posted a blog, I hope you'll participate in the Bust a Myth Bloggers Unite Project for National Infertility Awareness Week.

I hope this experience gave everyone who participated the confidence to turn your passion into action. I hope this inspired EVERYONE to really, really consider participating in RESOLVE's Advocacy Day either in DC or in your local districts on May 5th.

All of this mattered because it has paved the way for us to do even greater things as and for this community. I'm of the opinion we owe it to each other, because at the end of the day, we're all fighing for the same thing, right?

It matters because if we put good out there, hopefully we'll get a little bit of that good back. And folks: it is good work that we're all doing. Let's keep it up.

---

Don't forget: I'm appearing on The Surrogacy Lawyer Radio Show this Thursday, April 14th, with Evelina Sterling from Rachel's Well. Tune in here online at 2PM EST (11AM PST) to hear us talk about premature ovarian failure, menstrual health, and more updates about PETA.

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.

The Infertile's Manifesto

Infertility is... so many, many things, I have learned.

Thank you for such beautiful, moving, thought-provoking responses to yesterday's post, Fill in the Blank. Mum's still the word on where this is headed, but I was so moved last night as I read through all of the responses. Your answers reflect so many stages of the infertility journey: the anguish, the bitterness, the exhaustion.

I was moved and gave pause for the weariness in your words:

"Draining, crushing, the hardest thing I have ever had to go through, hell, suffocating, bullshit, a raw deal, soul sucking, overwhelming, depressing, devastating, a disease that changed my life and perspective forever..."

What stood out for me the most - to be honest, surprised me the most - where the attributions of hope. For all of the pain in these responses, there is hope and even joy to be found. I was so inspired by the subtext of your fighters' spirit throughout the responses. You've written your own manifesto of hope, strength, perserverance.


---

The Infertile's Manifesto

Infertility is the most devastating natural disaster you'll ever survive.

Infertility is something that is not going to break me.

Infertility is a journey that makes me stronger.

Infertility is not going to get the best of me.

Infertility is not defining me.

Infertility is not the winner.

Infertility is not our fault.

Infertility is not all I am.

Infertility is not the end.

---

I have to say, it is very humbling and deeply moving to put something like this out there and receive such raw emotion back, because what I have learned is that through it all, there is hope. And even if you don't feel hopeful today, it's still there. It's still just as much a part of our journeys. And when you don't feel hopeful, you're always welcome to come back to the Fill in the Blank list and say so: be angry, be dark, and rage against the cruelty of this indiscriminate beast.

And when you do need a moment of hope, then come back to this list, to the Infertile's Manifesto. Listen the echoes of our hearts. Feel this pulse of hope that beats steadily as we walk this path.

. . .

I realized I have yet to answer my own fill in the blank. So here goes.

Infertility is...

...what has brought me to each of you.

It has allowed me to make deep connections spanning continents, cables, and experiences. It has been a catalyst: I have become a different person, and it's up to me to be happy with myself, to be comfortable in my own skin, to forge a new path for myself and imagine a new story as we build our family. It has been a defining moment, but does not define me.

For all of the pain, the heartbreak, the stress, the fear: I'd never take it back. I'd never wish this on my worst enemy- but I'd never take it back.

Thank you for giving me such hope.

A Belly Full of Fire, Part Four: In a Perfect World

This is the fourth post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate, Part Two: The Wounded Healer, and Part Three: Which Direction Do We Swim?.

---

The lights go on the lights go off
When things don't feel right
I lie down like a tired dog
licking his wounds in the shade.

When I feel alive
I try to imagine a careless life,
a scenic world where the sunsets are all
breathtaking...

-Beirut, A Scenic World

---

A Belly Full of Fire, Part Four: In a Perfect World

This is one of my favorite songs I've been playing over and over again on my iPhone. I only discovered Beirut last year ago and I'm in love. What on earth does this quirky little indie tune have to do with infertility advocacy?

Let's play a game - Imagine. Let's imagine our careless life, our scenic world.

In a perfect world,
what would the fruits of infertility advocacy look like?

---

In a perfect world, we could all afford infertility treatments.

Better yet, they wouldn't cost a penny out of pocket. But if treatments still cost money, there would be state and federal grant programs for infertile couples; treatments could be counted as deductions on our taxes. And all insurers in all states would be required to cover treatments that fall within the latest medical guidelines. In a perfect world, infertility treatment would be regarded as a proactive health approach as opposed to elective and burdensome.

In a perfect world, it would be okay to talk about infertility openly. Oprah and Ellen and Tyra would have regular programs highlighting both the celebrity journeys of people like Celine Dion and Sarah Jessica Parker and Padma Lakshmi as well as real people from all walks of life.

In a perfect world, the racial disparity gap in healthcare would be closing. Conversations about infertility would transcend cultural and religious lines. Lesbian and gay couples would not be left out of the conversations either, because yes, even same-sex couples face infertility crises too.

In a perfect world, primary care physicians would pursue reproductive issues with an aggressive and proactive stance. Women and men would be taken seriously in their doctor's office. There would be widespread support groups in every community: more counselors and therapists who solely dealt with infertility issues. And couples wouldn't be afraid to be as honest as possible with one another instead of hiding behind quiet femininity or forced machismo.

In a perfect world, men are no longer an afterthought in the infertility community. The longing for fatherhood is just as valid as the desire to experience pregnancy and birth.

In a perfect world, we wouldn't be asked when we're having kids the day we get back from the honeymoon. We could complain about being infertile the way pregnant women complain about being pregnant. And if we do get pregnant, it's okay for us to complain and celebrate and do all of the things that would otherwise annoy the infertile community, because we've earned that right too.

And when we do resolve our infertility, we won't forget about the ones who are left behind. In a perfect world, we will proudly tell our friends and family the miracles it took to conceive our children.

In a perfect world, millions of dollars are devoted to research and clinical trials and comprehensive support networks and resources for women and men diagnosed with infertility. Our children will grow up with even greater access to care than we have now. In a perfect world, there is widespread dialogue about the importance of men's and women's reproductive health from an early age; we wouldn't be afraid to talk about the reality of fertility preservation in the context of sexual health education for teens.

In a perfect world, we will find an explanation for unexplained infertility. A miscarriage at six weeks is treated with no less support than a loss at six months. A stillbirth carries the same weight as the loss of a young child. In a perfect world, we will not forget about or ignore pregnancy loss, and instead elevate all loss with greater care and compassion.

In a perfect world, choosing not to resolve your infertility is not a sign of failure or giving up. Living childfree will not be regarded as lack or less than, but instead valued as a way for couples to redefine richness and fulfillment in their lives, and to bring themselves closure. In a perfect world, we will not be defined by our status as parents or otherwise.

In a perfect world, we will no longer be ashamed of or silenced by our disease. We will stop judging ourselves. We will be confident in who we are and where our journeys take us.

In a perfect world, we will conquer infertility.

My G-d, our perfect world is beautiful isn't it? Can't you just see it, taste it, feel all that weight and doubt and worry slip right off your shoulders and out of your mind?

---

And now our game of Imagine is over, for we do not live in a perfect world. That's why our advocacy efforts matter that much more.

Every act of advocacy brings us one step closer to a careless life, a scenic world where the sunsets are all breathtaking. What does your perfect world for infertility look like?
. . . . .

Tomorrow I conclude this series with a post that inspires a committed call to action. Stay tuned Wednesday for the final chapter of A Belly Full of Fire, Part Five: Millions of voices calling for change.

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.

Baubo, The Belly Laugh, and Spring Awakenings

It's been officially spring for a couple of weeks and I've been loving this warm weather across much of MA this week. It's been nearly three years since Ari and I moved to Boston, and these New England winters have made me appreciate the first signs of spring that much more so. I've been doing a lot of reading and a lot of thinking lately... I've felt as though I'm poised on the edge of decision-making with regards to family building, and I think I'm just about there. In these last couple of days of Passover, I've also been drawn closer to my faith. It's a holy season for everyone, really. Whether it's the pull of faith or perhaps the buzzing of the birds and the bees this time of year, there is certainly this feeling of energy, this vibrational hum pulsing just beneath the surface of things. Perhaps it's merely our skin delighting in all that sunshine, turning light into some much needed vitamin D.

I just finished Ellen Frankel's The Five Books of Miriam. This is a must-read for any Jewish woman (just short of Anita Diamant's The Red Tent- in fact, I call that required reading for every woman, Jewish or otherwise). It bills itself as a woman's commentary on the Torah. With it's highly conversational structure not unlike you might find in the margins of Torah midrashim, it is both feminist and traditional, forging new patterns of thought and interpretation while contextualizing the Torah into a feminist modernity from the lenses of our daughters, mothers, bubbes, and the women prophets and stars of the Bible itself. It is an incredibly empowering read for any Jewish woman coping with infertility, as it speaks so beautifully and painfully honest from the perspectives of so many barren Matriarchs.

In this rather empowered mindset, as I tap into that spring hum that seems to be buzzing all around me, I am reminded of a story that my dear friend Honeybee shared at one of the Red Tent Temples from a few months back. It's the legend of Baubo, a little known tale in the greater story of Demetre and her daughter Persephone's dark descent into Hades.

Demetre, the Greek goddess of the harvest and fertility of the soil, had a daughter, Persephone, who was wickedly abducted by Hades, the Lord of the Underworld. He tricks Persephone into eating the seeds of a pomegranate, and by consuming any food or drink while in the Underworld, she has sealed her fate for eternity: she may never leave. Demetre is understandably distraught, in fact, so much so, her grief plunges her into a dark, cold despair. She retreats from the World: the earth cannot bear crops, the land stricken with barrenness as she grieves the loss of her precious Persephone.

So much of Demetre's pain resonates within the ALI community.

Enter Baubo: descriptions vary from a woman with voluminous skirts to a talking vulva. Baubo sits in front of Demetre and lifts her skirts before her, telling raucous, bawdy jokes, inspiring a fountain of joy in the form of the deepest belly laugh, from our solar plexus and radiating outward. Baubo is the only one who ends Demetre's grieving, whose tears dry and face contorts into laughter. Through her bawdy jokes and brazen presentation, Baubo encourages Demetre to return to the World and to once again bear fertile fields. Baubo gives Demetre the courage to recover, to move on, to find joy and laughter in life again. And with that, the World awakens from the darkest Winter into the first Spring.

What can we in the ALI community learn from the legend of Baubo?

That after darkness, after pain, after loss: there is joy again. That we must encourage ourselves to laugh fully and completely, to laugh from the bottoms of our bellies, and by laughing we truly live in the moment. Even in our journeys to parenthood frought with worries, needles, tests, inconsiderate remarks and daily reminders of our struggles: there is still laughter to be found- there will always be a Spring to follow the Winter.

I have been feeling my own Spring Awakening as our path to family building comes into focus, and I wanted to share this energy, this inspiration: to laugh, to give ourselves permission to laugh, to feel joy, and to live in the moment. Here are some places I'd like to point folks in their IF journey, to take a moment to pause and laugh a deep belly laugh with Baubo herself:

Infertile Naomi is finding 999 Reasons to Laugh at Infertility. In addition to her blog, she has a Facebook page of the same name. Always hilarious, painfully honest - she is worth a read when you need to laugh at the absurdity of IF.

In the same vein as Infertile Naomi's blog, there's the YouTube video "Aunt Jane Knows More Than My RE."

WiseGuy over at Woman Anyone? is now on CD2 after "Agendy Fugnimimi" showed up. Always an interesting read, WiseGuy has a myriad of names she calls our dear Aunt Flo. Her post reminded me of a site I stumbled upon with a list of international phrases for good ol' AF - I make no vouchers if these are in fact true colloquialisms, but they are hilarious just the same.

And I always recommend People of Walmart when you need to feel better about yourself. Ok, so maybe it's not exactly politically correct to laugh at others' expense to feel better about yourself, but at least click over and check out the hilarity. Other photo blogs good for a laugh: This is Why You're Fat, LATFH (nsfw), Awkward Family Photos, Cake Wrecks, and Lamebook (occasionally nsfw). Honorable mention, for all you LOST fans: Never Seen Lost, a blog recapping each episode of Season 6 by someone who's never watched a second of the show prior to this season.

The moral of today's post: take a moment to pause and laugh, to laugh so hard and so deep from within your belly and womb that your tears are out of joy, of being fully in the moment. Let Spring awaken within each of you.

"At the height of laughter, the universe is flung into a kaleidoscope of new possibilities." 

~ Jean Houston

Show & Tell 4: Japan

It's time for another Show and Tell post! Show and Tell is brought to you by Mel over at Stirrup Queens. Make sure to go and check out what the other kids are showing this week!

I promised to show off some pictures from our trip to Japan last month, so here they are! We spent two  weeks in Japan from October 10-24, staying with my uncle for most of the time. He, my Aunt, and my Obachan (grandmother) were incredibly gracious hosts. We managed to visit eight cities (Nara, Osaka, Tokyo, Kobe, Arima, Iga-Ueno, Hiroshima, Kyoto) in just thirteen days!  It was quite simply the most amazing trip of my life: beautiful, spiritual, renewing. relaxing. We took over 1300 pictures and nearly two  hours of video. Here are some of my favorite shots from the trip:

This is Dōtonbori in Osaka. It's crazy busy, loud, and boisterous. We liked Osaka. as it reminded us of Boston in terms of lots of the bars and restaurant scene, with lots of intriguing people. Also, the guy in the suit? That's my uncle! This is one of my favorite pics from the whole trip.

This is Tosen Shrine in Arima, in the mountains north of Kobe. Arima was probably our favorite city; it's a resort town with hot springs all over the mountain that are pumped to the various resorts. The shrine was an accidental find while wandering the city; I found out later that the Shinto gods believed to be housed here not only protect the city, but are fertility gods as well. This shrine is often venerated by childless couples hoping to conceive. Go fig, huh?

This is the A-Bomb Dome in Hiroshima. What a profound, beautiful, haunting day. The Hiroshima Peace Park and Museum were probably one of the most humbling experiences of my life. This A-Bomb Dome, originally a government building, has been perpetually maintained in its original ruined state since the day of the bombing in 1944. One of the few structures to survive the bombing, it is officially the last structure still standing from that day.

These are two incredible photos are from the Kurama no Hi-Matsuri in Kurama, just north of Kyoto. It's a fire festival where men, wearing nothing more than loin cloths and sashes (pictured top), carry giant torches - anywhere from 15-18ft in length weighing more than 150 lbs each - up and down the mountain in an attempt to call the Shinto god down from the mountain. These giant torches are then made into a huge bonfire (pictured bottom). This festival has been done every year for the last 1300 years. It was the most primal thing I've ever experienced and we feel really lucky to be witnessed it first-hand.

You might recognize these torii (gates) from Memoirs of a Geisha. These are from Fuishimi Inari Taisha, just south of Kyoto where more than 10,000 vermillion torii snake their way around the mountain to a summit shrine honoring the Shinto god of rice, wine, business and prosperity, Inari. While we didn't make it to the summit, it was fun making our ascent through the dizzying orange labyrinth of gates. And the lady on the left? That would be me :)

What's the coolest vacation or most relaxing trip you've ever been on?

Understanding My Quest to Conceive

While we are not officially on our TTC journey yet, this document captures so much of what I've been thinking and going through since my Dx. It's a bit long to post here, but can be found here online:

Understanding My Quest to Conceive
(originally published 2000, Getting Pregnant When You Thought You Couldn't, pgs 199-205, Helane Rosenberg and Yakov Epstein)

We will be making more concrete decisions about family planning after my appt on 4/24 with Dr. Gross. We just yet don't know enough about my own ovarian reserve to know whether or not it's worth it to just try on our own or to use ART (Assisted Reproduction Technology). We just need to talk things through with our medical professional first.

Things I Wish I Could Tell People About Grieving My Infertility

Through various online support communities, I came across the list below, originally published here. I wanted to reproduce it in my own blog, expanding with my own thoughts. The bolded items are the original list, and I've added my thoughts below each point.

1. I wish you would not be afraid to speak to me about my losses, my infertility, and to ask what you can do to help. Sometimes I feel like people think I have some kind of contagious shame. It is incredibly lonely to bear this burden with just my husband, and to be honest, it's nice to get support from someone other than my spouse.
2. If I cry or get emotional when we talk about them, I wish you knew that it isn’t because you have hurt me. The fact that I have suffered has caused my tears. You have allowed me to cry, and I thank you. Crying and emotional outbursts are healing. As I said in my last post, I cry. A lot. I don't think I've ever cried so much before in my life. And it helps in ways I can't describe. And yes, sometimes I like to put Radiohead and Ben Folds and other emo music on loop and cry it out for a set period of time. Because it really does help.
   
3. I wish you wouldn’t pretend that nothing is happening to me, because it is a large part of my life. I need my friends and family by my side. POF is more than just about infertility. It carries lifelong health risks that are just as terrifying as not being able to have your own children. My Dx does not define me, as I have been told, but it does make up a large portion of who I am, and thus, occupies my thoughts. A lot.
   
4. I will have emotional highs and lows, ups and downs. I wish you wouldn’t think that if I have a good day, my grief is over, or that if I have a bad day, I need psychiatric counseling. I can be having a perfectly awesome day and something like seeing matching mother-daughter retro-styled aprons in a store window can totally ruin the rest of the day for me. I literally take this one day at a time.
   
5. Being an infertile person is not contagious, so I wish you wouldn’t shy away from me. POF is not contagious. It affects a very small number of the population. And while it might be on my mind 24/7, I still enjoy your company and talking about scrapbooking and shopping and Wii Fit and going out to eat and Wrestlemania and just hangin out.
6. I wish you knew that all of the “crazy” grief reactions I am having are in fact very normal. Depression, anger, frustration, hopelessness, and questioning of values and beliefs are to be expected during and following what is happening to me. I'm kind of going through it all at once. Call me a non-traditionalist when it comes to grieving. But every day is different, and I work through each day one at a time.
   
7. I wish you would understand the physical reactions to grief. I may gain weight or lose weight…sleep all the time or not at all…want to surround myself with business or be all alone, all of which may be related to my grief. It's nothing personal. My husband is an extrovert when it comes to dealing with his grief. He likes to surround himself with others. I am an introvert, but I desperately seek validation for my emotions in others.
8. My birthday, anniversaries of the diagnosis, holidays, and the days I find out that this cycle too was a bust, are all terrible times for me. I wish you could tell me that you are thinking about me, and if I get quite withdrawn, just know I am doing my best to cope. Please don’t try to coerce me into being cheerful or tell me that it will be better soon. Arieh has always said that I hold a grudge for life. The day after St. Patrick's day is forever ruined, and not just from the usual post-St. Pat's day hangover. And we haven't even started any fertility treatments yet, so I have no clue what our emotional states will be like once we start that part of our journey.
   
9. It is normal and good that most of us re-examine our faith, values, and beliefs throughout this journey. We will question things we have been taught all our lives, and hopefully come to some new understandings to include those with God. I'm not trying to be pushy, but God and I are not right with each other right now. I'm working through it, and if it looks like I've given up on God, it's nothing personal, and it's not abandonment. I know I'll be back. You can't be angry at something you don't believe in. I just need time.
   
10. I wish you understood that infertility changes people. I am not the same person I was before I experienced it. My entire future family that I have dreamed of sharing with my soulmate has been completely taken away from me. While we may still be parents, it will not be easy for us to get to that point, and it challenges notions of pregnancy achievement that most other couples take for granted. And despite our best hopes, we might never be parents- adoption is not as easy as everyone thinks it is, and it's not for everyone. It is no easy process any way you slice it and will impact so many aspects of our lives, such that, we cannot help but be changed by the experience. I'd like to think that it's not that the old Miriam and Arieh are gone, rather, we are a changed couple with different thoughts on hope, strength, and determination. These things are defined in new ways for us.
    

I have to take this one day at a time, and honestly, we need all the support we can get. And we are so blessed and grateful for it.