Speaking at the Capitol

If you are reading this Wednesday morning, I am currently at the US Capitol speaking at a congressional briefing with Senator Gillibrand and Representative Wasserman Schultz about infertility to help get money appropriated to the CDC to set up a National Action Plan.

I know–if you had told me four years ago that I would be doing this today, I would have called you crazy.  Blogging has opened up the most amazing experiences.

And I can also assure you that I am quaking in my 9 Wests.

I didn’t talk about this up until this point mostly because I thought thinking about it too much would make me nervous and because it also still feels surreal as I write this the night before (and schedule it to post so you can read this while I’m shleping downtown).  Tomorrow or tonight, I will post whatever pictures I was able to take.  I was also told that it will be videotaped, so hopefully, I’ll be able to post at least a clip from that.

But I wanted you to know what I’m saying on the Hill.  Partly for you, because you should know what is being said on your behalf and partly for me, so I can feel like y’all are there:

27.

Newly-married.

I was reading the obituaries being run in the New York Times after the Twin Towers fell and there was one that changed our family building plans.  A woman, my age, only two weeks married herself, just back from her honeymoon, lost her husband on September 11th.

I knew I had all the time in the world biologically–after all, women had children into their forties and I was only 27.  But I didn’t have all the time in the world emotionally, not in a post-September 11th world where everything felt so fragile.

And so, our decision to wait a year into marriage was thrown out the window and thanks to that widow in New York, we entered into family building with a mixture of giddy excitement since we were certain it would work on the first try (after all, my eighth grade sex ed teacher wouldn’t steer me wrong), and heavy hearts for all the people who lost their partner before they had a chance to build their family.  I was not yet 28.

But it didn’t happen.

I told a few friends we were trying to conceive either because I knew they were trying too or they had just become mothers and I thought I’d be joining them soon enough.  But one by one, all my friends moved on to the other side while I still tried, reading books, browsing the Resolve site despite also receiving the message from my gynecologist that I had nothing to worry about and I was just being anxious, and asking everyone who had been successful my numerous questions–what did they know that I didn’t know?

In 2002, blogs were barely in the toddler stage, therefore, you couldn’t go online and read the experience of another woman, measuring her stats against yours.  You could go on bulletin boards, and believe me, I did, asking my thousands of questions to faceless women who verbally sprinkled me with “baby dust” during our interactions.

And it’s sort of scary when you think about it because I was taking my advice from people I didn’t know.  Thankfully, none of them steered me wrong and I moved from the trying-to-conceive boards to the infertility boards, gathering everything I could on my way to what I knew in my heart was going to be a diagnosis.  But what I wished at that point was that my doctor or my friends were doing a better job of guiding me.  Because I wasted a lot of time and a lot of pregnancies on the way to the clinic.

7.3 million Americans are infertile.  1 in 8 of child-bearing age.  You would think that I’d have a few infertile friends with those statistics, and I did.  They just weren’t talking about it.

Beyond my mother, who herself experienced infertility, only one person came forth and told me that they had used Clomid.  Later on, I discovered that numerous women in my monthly women’s social group either experienced recurrent pregnancy loss or had done IVF to conceive.  I found out that five friends were at the same clinic when I finally had my first appointment.  Until I received my diagnosis, my peers and doctors didn’t speak with me about infertility.  After my diagnosis, it was like I had joined a secret, underground club.

Starting treatments was a fairly sickening experience–not just the physical side of learning how to give myself injections or the emotional side of receiving negative after negative pregnancy test despite having spent the month enduring those injections–it was the financial side that was possibly the most distressing because it was impossible to build our family via any of the options available based on the life choices we made.

Despite my ability to earn a lot more teaching at the college level with my graduate degree, I chose to work with children (big mistake for an infertile woman!) because I wanted to make a difference in their lives writing-wise before they reached the college level.  My husband could have equally pulled in a different salary, but he chose to go into community-building work at a non-profit.  Our jobs were about serving others and because of that, we weren’t able to help ourselves.  Our choices were either to forget the ethical commitments we made to building a better society or to forget our desire to have a family.

I am lucky that my clinic understood that we were between a rock and a hard place financially and did everything in their power to help us utilize the technology out there that could circumvent our female factor infertility.  Our clinic even went so far to give us a free IUI during a month where it looked like our chances were good but we didn’t have the ability to pay the IUI costs.  I don’t just think my experience has been extraordinary–speaking with the 2300 men and women on my blogroll these past four years has taught me that my experience is the exception rather than the norm and that is also due to the fact that my enormous clinic, with numerous satellite offices in the area, has the financial ability to stay afloat while still helping patients.  Smaller offices are not as helpful, not because they don’t want to be, but because they can’t.

During treatments, I woke up every morning around 4:45 a.m. to have enough time to go for a quick run and shower before my blood draw and sonogram at the clinic.  I then drove to school and spent the day trying not to think about the fact that I can’t conceive while simultaneously waiting for my nurse’s phone call to give me my injection instructions for the night.  I had to pretend nothing was amiss while I chatted with other teachers in the lounge because infertility is secretive.  Infertility is hidden, and not mentioned, lest people get uncomfortable.  I would then go home and obsessively try every idea under the sun to make treatments more successful including drinking Robitussin and green tea–not because I was baby crazy and wanted a baby NOW!  But because I needed the emotional pain of infertility to stop.  And the only way it was going to stop–at least in my experience–was to resolve my childlessness with parenthood.

I got the happy ending.  My twins are the product of a lot of information gathered, injections endured, doctors who cared, and a nameless widow in New York who set my family building process in motion.  I can never thank her enough because her loss and the telling of her story gave me the gift of time.

My story could have ended here if we weren’t so damn eager to add one more to our family after knowing just how good parenthood could be with these two.

Four years ago, I went online seeking community as we entered into family building again.  My face-to-face world was just too damn silent about infertility.  And what I found was a network of 2300+ bloggers all writing out their experience, exchanging information, giving support.  And this number keeps growing.  Somehow, I became the hub of this network, and the stories flowed through me and came out in the form of a book, Navigating the Land of If.  I am so grateful to be in a position where I can absorb such a wide-range of experiences.  It has opened my eyes enormously.

This is what I’ve learned: we need to talk about infertility more–not just with each other, but with those outside the experience so they’re not fumbling in the dark towards a diagnosis.

We need to learn more about infertility–there are just too many physical problems that can’t be overcome with regularity with the existing technology.  Medicine is an art, and its practitioners need information to practice their medium.

We need to do more about infertility–7.3 million, 1 in 8 Americans of child-bearing age–these numbers are too enormous to be ignored.  There are countless Americans making the best decisions they can with limited access to good reproductive endocrinologists, instead relying on gynecologists who aren’t trained to treat infertility.  They have limited finances to build their families–with most roads of assisted family building priced outside the capabilities of the average American.  We have people who would make fantastic parents unable to experience parenthood due to a medical condition.

I urge you to take a few moments and peruse my enormous blogroll, a collection of over 2300 personal stories.  Read what the average person experiencing infertility goes through in the course of a day–emotionally, physically, and financially.

If the children are indeed America’s future, we’ll do more to ensure that they get here.

Thank you so much for your time.