Join the Movement

This week marks National Infertility Awareness Week.  It’s the infertility community’s biggest of events, held as we all catch our united breaths and sit on the precipice of that most painful of national holidays – Mother’s Day.

Bloggers Challenge badgeRESOLVE has selected the theme of “Join the Movement” for this year’s Bloggers Unite challenge.  The Blog Challenge seeks, “to bring together bloggers to talk about how you are making the difference in ways large and small in the lives of people with infertility.”  How am I making a difference?  Am I making a difference?  I honestly don’t know.  All I do know is that my life would look much different, much darker right now were it not for our decision to break the silence of our infertility, turn heartache to activism, and establish and foster a multitude of support networks in our lives.  We never set out to be advocates; we just needed to find a way to get through the day.  When my mother died of cancer in 2002 no one asked me to make a difference or join a movement; I grieved, I grew, and I learned to live on.  First, from day to day, then month to month, and, ultimately, year to year.  I figured I’d apply the same approach to infertility.

Mr. But IF and I officially announced our infertility to the world on February 16, 2012.  After 20 months trying to conceive our first child, 2 serious medical diagnoses (with another unknowingly on the way), and 1 ectopic pregnancy terminated at just past 6 weeks with the chemotherapy drug methotrexate, we were tired, lost, and alone.  We had the support of close friends and family earlier on in the struggle, but everything was handled with a hush and a whisper, a gentle hand on the shoulder and a knowing look, and a whole lot of hoping no one outside of that tiny inner sanctum would ask any questions.  We lived like so many others in the trenches of infertility live; composed of 1 part false bravado and 1 part shell shock.  Then, the word “personhood” hit that 24/7 national media cycle.

In case your last name is Van Winkle and you’ve been in hibernation for the past year, personhood has become the rallying call of many anti-abortion/pro-life advocates in this country.  By defining the start of life as the time when sperm first fertilizes egg, personhood advocates seek to grant all the legal rights, privileges, and protections of a human being to the tiniest of embryos.  Primarily done in an effort to criminalize all abortions (the tagline for PersonhoodUSA is “protecting the pre-born by love and by law”), personhood legislation and amendments have the potential to have serious chilling effects on many types of infertility treatments and medically necessary “life of mother” abortions in this country.  If we define life as the merging of sperm and egg to create embryo, then infertility treatments such as in-vitro fertilization, during which these fertilized-embryo-proto-“humans” may be subject to some risk, could be akin to murder even though the ultimate goal of these procedures are the creation, not the ending, of life.  Similarly, women such as myself, women who made that debilitating walk into maternity triage pregnant with a doomed ectopic pregnancy and out of maternity triage having poisoned their much wanted child could be turned away at the hospital doors or watch the doctors that treated them be brought up on manslaughter charges.  On February 12 of last year I had enough.  I posted a link to a newspaper article detailing the potential pitfalls of Virginia’s proposed personhood bill on my Facebook wall and explained that, “As the survivor of an ectopic pregnancy, I find legislation like this equal parts disturbing and infuriating. No matter what you think about abortion, nobody should ever have to risk their life hoping a non-viable fetus will naturally miscarry. I can say first hand that the experience is traumatic enough without injecting politics into the mix.”  I sat back, held my breath, and waited for the anticipated fallout.

I almost think I wanted a battle.  I wanted controversy, I wanted someone to scream at, I wanted to make ample use of that “unfriend” button.  Looking back now I know I was grieving for the pregnancy we’d lost just 3 months earlier.  With each new personhood article that hit local and national media sources, I found myself attracted to the comments section like they were my own personal train wreck.  I added my own comments, told my own fresh story to the frenzied gaggle of anonymous Internet commentators, and watched as I was called a murderer, a selfish whore, a baby-killer, and worse for choosing my own life over that of a mass of cells in my fallopian tube that had not one single hope of ever becoming a human being.  I think I may have actually liked it, or maybe thought I deserved it.  I was in so much pain, so very lost and confused, that the hatred and scorn of the Internet masses was actually something I sought out.  If I couldn’t talk to anyone in my real life about the baby I had killed, at least I had the faceless mob that wanted me to bleed out before ending my pregnancy to confide in.  When the flagellation of anonymous strangers ceased being enough, I brought my story to those I know in real life.  I almost couldn’t believe it when all that was doled out to me in return was a helping of love and support bigger than I could have ever dreamed.  I didn’t get my confrontation; instead, I got love.  And, only through that love did I learn to forgive myself.

Because a gal can never have enough of a good thing (shoes, jewelry, trans-vaginal ultrasounds…), I went from hiding my infertility to shouting it from the rooftops in about a month’s time.  On March 20, 2012, I announced my intention to walk in RESOLVE’s inaugural Washington, D.C. Walk of Hope; on April 4, 2012, I presided over the first meeting of my RESOLVE peer-led infertility support group; and, during Infertility Awareness Week last year, Mr. But IF and I attended a local RESOLVE fundraising dinner organized by a support group member.

I think it matters that our infertility 0 to 60mph in 10 seconds flat happened during a four month time span during which we were not permitted to try and conceive.  After receiving a methotrexate injection to terminate my ectopic pregnancy on November 18, 2011, we were forced to wait three months for the drug to leave my system and for my folic acid levels to return to adequate preconception levels.  Methotrexate works by attacking rapidly growing cells in the body and thus is great at killing cancer and embryos alike.  It’s also a folic acid antagonist and totally depletes the body’s stores of this most essential of prenatal vitamins.  While we waited we went to our first reproductive endocrinologist and jumped through what we assumed would be a bunch of pointless diagnostic hoops (hey, doc, I know what the problem is!  I don’t ovulate!), only to discover during my first HSG that both of my fallopian tubes were proximally blocked.  Hashimoto’s, PCOS, anovulation, ectopic pregnancy, blocked fallopian tubes?  I was about to shout infertility Yahtzee in the months leading up to our public infertility confessional.  I needed to do something – anything – to help keep focus, to help maintain sanity, to help me find a reason to get out of the bed in the morning and lay my head down to sleep at night.  Fundraising?  Sure.  Support groups?  Why not.  Dinner out?  Sign me up.  Hell, had someone asked me to discuss our infertility on a tabloid news program, write a tell-all book, or become medical test subject for fledgling ultrasound probers, I probably would have done it.  Anything was better that waiting and remembering, waiting and wondering.

Something funny happened along the way, though.  All these avoidant behaviors, these selfish distractions, they did a lot more than help me pass the time.  They did something that no amount of openness with fertile friends and family members could have ever done.  These activities normalized my experience, they let me know I was most certainly not alone in my feelings of pain and powerlessness.  And, not the least of which, anger at an insurance system that was well within their rights to tell me the surgical removal of my endometriosis was akin to breast augmentation because that surgery might help me make the “lifestyle choice” to become pregnant.

When my mother died I rebuked all the attempts of others to tell me that they understood my sorrow and had walked in my shoes.  My mother lost her battle with cancer 14 agonizing months and 1 brief remission after her initial diagnosis.  We rushed her to the hospital on my 18th birthday when I was home from college for Fall Break, I was told of her diagnosis a month later when I was home for Thanksgiving, and I spent the bulk of my Christmas break that year pleading with her in vain to let me withdraw from school so I could be home for her treatments.  We lost her the following Christmas.  I was 19; she was 48.  During the funeral and for many months after friends and family offered endless thoughts and condolences for which I’ll be eternally grateful.  All offers of support were welcome, save one.  Each time a friendly face recounted how hard it was for them to lose a parent or grandparent I couldn’t stand it.  90 year old grandparents are supposed to die, men and women in their 50’s and 60’s are supposed to face their own parent’s mortality.  A college sophomore isn’t supposed to watch her once-vibrant mother waste away to skin and bones in the matter of 14 months.  I have exactly three childhood friends who are allowed to talk to me about my pain like that.  One lost her mother much younger than I to sudden cardiac arrest, and the other two, sisters, lost their father to cancer a few months after my mom passed.  Beyond those three, however, no one is allowed to try and normalize my experience.  I built this wall around myself to keep out all such attempts to share in my pain and commiserate.

That wall was still there when infertility and pregnancy loss entered my world.  I was determined that no one knew my pain, and no one had a right to compare their pain with mine.  Yes, I had my lovely gals in the computer, but the mere act of having friends in the computer in the first place just served to reinforce my otherness.  Normal women, fertile women – they don’t have friends in the computer.  Only lonely, broken me had those.  But, oh how wrong I was.  How wonderfully and how sadly wrong I was.  As with coming out to friends and family beforehand, becoming involved in the real life infertility support and advocacy communities challenged my preconceptions and base assumptions.

2012 Walk of Hope

The 2012 Washington, D.C. RESOLVE Walk of Hope

I signed up for last year’s Walk of Hope on a whim and was attracted to the event because, unlike so many other fundraising walks, no minimum monetary goal was required and no registration cost would be assessed.  RESOLVE recommended a $100 goal, and I stuck with that default knowing no harm would be done if I couldn’t meet it.  $780 later, my preconceptions were shattered.  As I’ve discussed before, my biggest fear when founding my peer-led support group was that I’d be alone in the room with Mr. But IF and without any support group coffee.  In the past year our smallest gathering included 8 women and men, and our “surviving the holidays” special December meeting stretched our small conference room to the max with a total of 23 attendees.  There went another blind assumption.  Even when we announced our struggles to friends and family, I expected some push back, some controversy, especially from one particular wing of our family.  The very same relative from whom we expected the greatest judgement was the first to let us know of her own struggles with back to back ectopic pregnancies.  Another lesson in don’t judge a book by its fertile-appearing cover.

Unfortunately, far too many people know my pain, live my pain, survived my pain.  That 1 in 8 figure?  It’s never been clearer to me than when I walked alongside 720 other brave women and men in three states who had raised tens of thousands of dollars for RESOLVE; than when we go around the table and share our stories each month at our support group; than when my infertility announcement on Facebook was greeted with 5 private messages within a week from high school, college, and professional friends and acquaintances – all young, educated, successful women – who told me of their own silent struggles with infertility and pregnancy loss.

So, how did I “Join the Movement?”  I didn’t join the movement, I was saved by the movement.  At best, I’m an accidental activist.  After my mom died, I found a strength in myself I didn’t know was there, I found a man by my side I’d someday call my husband, and I found a drive to make my mother’s life’s work, her self-proclaimed greatest achievement, her daughter, a woman she’d be proud of.  Through that experience I learned that my personal and professional successes – what some might view as solely selfish pursuits – are things far beyond myself.  Less than three weeks removed from Mother’s Day, here I am embracing the greatest gift she gave to me.  The knowledge that, through living a life she’d be proud of, I’m making a difference.  My path on this long journey of infertility is a similar one.  I make a difference by living my life, raising my voice, and walking alongside countless  others.  Actions rooted in self-preservation walk on their own legs and leave their own legacies.  I join the movement by living it – and, that’s alright.

For more information about infertility and National Infertility Awareness Week, please see the following helpful links from RESOLVE:

Infertility 101

About National Infertility Awareness Week

Why we need advocates and Advocacy Day

May 8 is Advocacy Day in the infertility community.  This is the day (because, we clearly only merit one day… I digress) where women and men inflicted with or impacted by infertility get to travel to Washington, D.C. and have their stories heard.  In RESOLVE’s words,

Advocacy Day is a RESOLVE event where women and men living with infertility come together in Washington, D.C. to talk to Members of Congress about issues important to our community. RESOLVE holds this annual event so you have chance to make your voice heard. We will make your appointments for you and provide you with the training and information you need for this day of empowerment. Advocacy Day is a great opportunity to meet RESOLVE leaders and others from the infertility community who want to make a difference.

I want to make a difference, and I very badly want to go to Advocacy Day this year.  However, I also work at a college where early May is one of the most demanding of times of the year.  Combine this with a Wednesday event, a 7 hour drive-time to D.C., and the number of hours I’ve already missed this year for doctors’ appointments, and, unfortunately, it’s a non-starter for me.  I hold out hope the timing will be different next year, but at least I will be able to make it down to D.C. in June for the Walk of Hope.  (And, I know I’m becoming a broken record about this, but it was such an uplifting day last year!  If anyone is interested in donating to our team, btw, please use my contact form and I’ll shoot you a link to our public fundraising page.)

As a peer-led support group leader of a RESOLVE support group hosted in my old home state, however, I’m saddened to learn that even in that albeit small state that is a short drive or public transit trip away from D.C., no one has yet signed up to participate in this powerful and so very important event.  I understand the reasons of course (see the long list of my own above!), but reflecting on those reasons makes me worry, while also making me thankful that we have a group like RESOLVE that can keep this train on the tracks.  If you’ve learned anything from this blog, I hope it is that infertility is not kind to the soul, the social life, the schedule, or the bank account.  Relying on a bunch of emotionally run-down, lonely, sick-day poor, and cash-strapped women and men from across the country to travel to D.C. mid-week for a few brief moments with some Congressmen seems a hard way to effect change.  But, if there’s another thing infertility teaches us, it’s that often the hard battles are still worth fighting.  I’m so thankful that RESOLVE is leading this battle.  Come May 8 I will rest all my hopes and dreams (and angst) in the fully capable hands of those brave infertility sisters and brothers who have traveled and spoken for those of us who couldn’t.  Please know, for each one of you that walks through that door, down that hallway, and into a meeting with staffers and representatives, that there are hundreds of us standing beside you.

Last year Mr. But IF and I almost signed on for Advocacy Day, but we were so newly open about our struggles we didn’t know if we were up to the challenge.  We had never publicly spoken at length about our struggles, I had just founded the support group, and we were only in the early days of opening up to friends, relatives, and, ultimately, random strangers.  Looking back now I wish we had participated, but I won’t blame us for our hesitancy.  I understand and respect that hesitancy as part of the road that we had to travel to get to where we are today.  What I most regret is that we missed out on an opportunity to stand united with the powerful women and men that form this strong community, to experience the electricity that flows through one’s body when you know you are doing something important, and to, in essence, do something in this path to building our family that has so largely been comprised of endless, hopeless waiting.

Though I may not have taken the train to D.C. last year, I did write my three Congressmen, with incredibly mixed results.  And, I’ve decided, what is the point of having a blog if you can’t do a little politician shaming (and praising) every now and again.

U.S. Senator Chris Coons totally failed to respond to my letter.  His was the response I’m most used to getting, of course.  That awkward “look away quickly, she might be contagious or get hysterical” knee-jerk I’ve experienced first hand so many times.

U.S. Senator Tom Carper sent an entirely appropriate, if stilted reply.  A fine example of a legislative aide doing his homework and writing a thoroughly adequate constituent response letter.  The statistics employed were cribbed directly from RESOLVE, the review of existing and proposed legislation the letter offered was on point, and I was informed that, “Should my colleagues and I on the Finance Committee have a chance to consider the legislation, I will be sure to keep your views in mind.”  Well done, Mr. Carper.

Finally, U.S. Representative John Carney totally missed the point.  His response is the one that continues to add fuel to my fire.  Carper acknowledged my support of the Family Act of 2011 and the Adoption Tax Credit, Coons utterly ignored me, but Carney?  Well, he (his aide) sent along the most point-missing paean to the importance of family planning, access to contraception, and women’s health I’ve ever read.  Of course, because this is the way my luck works, my Gmail ate his reply, but, trust me, it was full of some gems I’d love to quote for you right now.1 Carney wrote (in part):

Let me begin by saying that family planning is a deeply personal and private matter, and I understand that Americans are sharply divided on issues from sex education to abortion. In my role as a Congressman, I am committed to helping ensure all Delawareans have affordable access to family planning information and preventative healthcare services. With proper access to such resources, we can prevent disease, death, unintended pregnancy, and pregnancy complications.

It took everything in my power not to reply to him (his aide) that birth control wasn’t my problem, you see, my body does that naturally.  Had I known I’d be moving out of his state (and to a fertility mandate state) in a few short months I probably would have let it rip.

So, when only 1 out of 3 elected representatives are actually taking a moment to have their staff prepare form responses to calls for infertility and adoption friendly legislation, clearly there is a need for increased visibility and advocacy on the part of this community.  Stand strong on May 8, everyone.

Post edited 5/8/2013: Gmail un-ate my email from Representative Carney so I’m finally able to quote it here!

1 Have any of you ever had this happen?  I still have the email in my Gmail archives, and when viewing it in a list I can see the text teaser for a much longer email, but when I click to load the email all I get is a blank page.  What the wha?  If it does ever reappear I’ll add to this post.