2012 RESOLVE Advocacy Day Address: Imagine

Good morning everyone.  It is so nice to see so many of you back again, so many familiar faces. And I am truly appreciative of our first time attendees.  You are doing something very important today.  For those of you who know me, you know that I share my innermost thoughts with you on some of the things that are most personal to all of us.   The thoughts I have that bring me here today.

Right now, I’m angry. I’m very, very angry.

This has been an impossible year for women’s health issues.  Absolutely impossible.  We saw a major foundation dedicated to the education and research of breast cancer purport to cut funding for mammograms for political reasons.  For the first time in decades, we have seen attempts to rollback access to contraception – in fact, we have seen major media figures abuse women – calling one a slut and a prostitute -  simply for supporting coverage for oral contraceptives.  We have seen multi-state efforts to enact bills to declare an embryo a “person” under the law advance through several legislative bodies, which would have the effect of limiting in vitro fertilization treatment. And we have seen members of a community fight against the building of an infertility clinic instead of cheering increased access to medically necessary treatment.  In an election year, we have seen candidates, instead of promising to get us more rights, tell us why we don’t need them, or deserve them, or promise to take them away.

I apologize to the men in the room for addressing most of my comments to women.    But I find that women have an earlier and clearer view of what infertility means to them.  Being single again, and having recently joined a dating site, I’m constantly astounded by the numbers of men in their 30s, 40s and even 50s who, in response to the question whether they want to have children, answer “someday”.  I suspect that so many of them, if they knew what kind of problems they may have, and didn’t view it as an affront to their virility, would be more involved in this fight.  But until we succeed in educating people about the causes of infertility as well as de-stigmatizing it, I regret that this will mostly be a women’s fight. Nevertheless, I want to thank each of the men in this room for overcoming the cultural bias and joining our efforts here today. You are truly leaders.

You’re going to hear questions today or you may have already heard them, about why we should provide a tax credit for a disease that isn’t even life threatening.  Really?  In a country founded on the inalienable rights to life, liberty and the pursuit of happiness?  Where we cover erectile dysfunction drugs, penile implants and vasectomies? Not to mention many nose jobs and lasik surgeries.  Enough said. What exactly does life threatening mean to you?

A few weeks ago, I had to go for a trans-vaginal ultra-sound.  I was experiencing chronic unidentifiable pain  and my doctor just wanted to take a pre-cautionary step.  No big deal, right? We’ve all been through lots of them, right?  After going through double digit cycles, I certainly  knew what to expect. I walked into the examination room, already stripping off my clothes. I looked at the chair, the condom covered probe, the stirrups, and then I stopped.  I started to shake.  I fought with myself, told myself that I was being ridiculous.  I got my jeans off, draped the robe, and then positioned the screen so that I could see it, as I had done so many times.  I knew what to look for, afterall. 

As the doctor walked in and started to tell me what to expect, she remembered what my chart said and mumbled something about my history.    With shaking hands and tears rolling down my face, I told her that I wanted to see the screen. She didn’t react to my near hysteria, just agreed and said, “a little PTSD? Totally normal”.  Ladies, right now, there are a a number of states that have either enacted or are considering mandatory ultra-sound requirements as a condition to an abortion.  Governor Tom Corbett of Pennsylvania said that a medically unnecessary but legally mandatory ultra sound prior to an abortion isn’t a big deal. “You just have to close your eyes,’ he said.  Really? Is that what they're going to tell rape victims? I wish Governor Corbett had been with me for the hour or so it took until I stopped my head to toe shaking after my ultra sound, which wasn’t followed by anything nearly as traumatic as an abortion.  For each of you, regardless of the outcome of your fertility treatments, an ultra sound will always remind you of the fear, the anxiety, the losses, and will always be wrought with emotions.  The violation you feel should not be minimized.  Legislation like this, requiring a medically unnecessary ultra-sound, should not be tolerated by any of you.

Less than 2 months ago, the state of Virginia tried to pass a personhood statute. A personhood statute would mean that procedures like ICSI, embryo freezing, assisted hatching, and even stem cell research would be illegal.  Could be deemed “murder” under the law.  As some of you know, I lost my embryos in my divorce, I was forced to give them up and they were donated to research.  While my views on choice, and when life begins, and the value of stem cell research have not changed, there are no words to describe the searing pain in my heart as I watched the state that my ex-husband lives in attempt to make what he forced me to do a crime, one that I would be complicit in.  I am proud to say, that people in this very room kicked in to action so quickly, and led the fight, and I mean FIGHT, to defeat that legislation.  I am proud of the work that RESOLVE does on behalf of each and everyone of you and families across the country to promote and protect access to affordable treatment for the disease of infertility.

So, was the emotional trauma I felt from a benign ultra-sound after 10 rounds of IVF life threatening? Or was the gut wrenching violating pain I felt over the introduction of personhood legislation life threatening?  I'll let you decide.

I have to tell you, as angry as I am about the assault on women's health care, I am so proud to be an American.  I am so proud to live in a country where anybody, absolutely anybody who wants to, can walk into the Capitol Buildings, as you will be doing today, and talk to their legislators about what’s important to them.  I have been doing this on one issue or another since my freshman year in college. Of course, my on line dating profile mentions this. I have to share  you with you a response I received recently:

"you will probably hate me for this but your comment about getting on the Acela and having access to your representative seems naive and out of touch with reality. You are either privileged enough to have serious connections or are going with a big check/bribe. That is the reality."

That's not reality.  This kind of attitude is probably the reason why not much more than about half of the people in this country vote, even in a presidential election year.  But as I stated before, when people get together to act, change happens. 

At the hearing on the contraceptive coverage rule, when faced with an all-male panel of “experts”, Congresswoman Carolyn Maloney asked “where are the women?”. I ask the same question today.  I am grateful for each one of you for your attendance here.  But infertility is a disease that affects ONE in EIGHT families in this country, 7.3 million people. Why aren’t more wannabe moms and dads here today?  As the examples I just gave you a few minutes ago demonstrated, when the women fight, bad rules or bad acts are rolled back.  After the backlash against the Susan B Komen foundation for cutting funding to Planned Parenthood for mammograms, they restored that funding. When RESOLVE ran in front of the Virginia legislature to prevent the personhood bill, it was withdrawn. If we want to see more rights for infertility patients, we need all of you, and your families, and your friends, your colleagues, your husbands’ friends, your doctors, everyone touched by infertility to rise up and fight for the rights that we, as patients with a disease, deserve. What you are doing here today is not just the privilege of being an American, it is your sacred responsibility.  Act proudly.

Once upon a time, each of us had sex for the very first time.  I’m going to go out on a limb here and suggest that wanting a baby was the furthest thing from your mind that night.  I’m guessing that instead, you hoped, you prayed, you wished on an eyelash, that you weren’t pregnant. Because having a baby then would threaten the dreams that you had for your life.

How far you’ve come and how much thing have changed.  I don’t want to speak for anyone else here, but every dream I ever had for how my life would unfold has been altered. Life threatening?  I don’t know how you define that. But certainly, the dreams I had for my life have been more than threatened, they have been destroyed.  I have learned to go on, to work, to play, to laugh, to drink, but that pain still is, and always will be, a part of me, it has changed the life I lead and who I am. Nevertheless, my friends who either had an easy time becoming parents, or those who didn't feel the same way I do, ask me all of the time why I'm still doing this, if it's causing me to hold onto the pain unnecessarily.  I often ask myself the same thing.


Three weeks ago, I was on a second date with someone I actually liked.  Truly intelligent, engaged and engaging, no visible deviancies or social diseases and very handsome.  We were sharing confidences and stories and there may have even been a kiss or two.  It was going really well.  The background music all night had been amazing, lots of classic rock and roll ballads. Perfect score for a perfect evening.  We were completely focused on each other.  Suddenly, I became aware of the song being played, Imagine by John Lennon.  And not that I wanted to, but in that moment, I couldn't help it, I thought of all of you, of each of you. And each of the 7.3 million people who desperately want to and deserve to become parents. Who didn't choose to be infertile.  I thought of all of the dreams each of you have. And my heart ached for each one of you.  And while I tried to hold them back, I had tears coming out of my eyes and rolling down my face. The lyrics just really told the story of why I'm here today: “You may say I’m a dreamer. But I’m not the only one.  I hope someday you will join us. And the world will live as one.”  I knew in that moment that I'm not stopping this fight.  I thank you for joining me.  

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