Wednesday, May 17, 2017

At the Table

Tonight was my long-anticipated, fretted about and totally awesome opportunity to keynote the Resolve the National Infertility Association's Advocacy Day Welcome Reception.

I did it, and I shared my words below because I believe them with every fiber of my being.  Thank you for being a part of our story.  We are holding those who are still waiting in our hearts.



Susann Edwards Remarks
Keynote, RESOLVE Advocacy Day Welcome Reception
17-May-2017

Welcome to Washington. 

By now you’ve ridden the wrong direction on the metro, questioned your fashionable over functional shoe choice, Instagrammed a photo of yourself in front of a monument or two, and stood awkwardly in the corner of this room trying to muster the courage to talk to someone.  Hell, I’ve done all those things today, and I’ve lived here eighteen years.

I’ve spent 18 years trying to figure this city out.  I was a kid who loved campaigns and politics….and even considering the news from the last 36 hours -- I still do.  I still feel the magic when I look at the Capitol Building.  I still fundamentally believe that people come to Washington because they want to make a difference.  And I still believe that Washington needs you, people exactly like you to show up.  And speak up.  And here you are.

Because infertility doesn’t give a damn if you own a pink knitted hat or you want to make America Great Again.

Me? 
I’m infertile.
And I’m a lobbyist. 
As you can imagine, I’m a hit at most cocktail parties.

I won’t bore you with my infertility story.  But I will tell you, I’m the most in-your-face person with infertility you’ll ever meet because I believe, fundamentally that pushing this conversation into the shadows is so destructive.

I was your typical Tracy Flick from the movie Election DC story.  I came here in my tiny Ford Probe with all my worldly possessions ready to put career-first, career-driven, and career-only.  I had some mighty things to do before I got married.  I wanted to become a Vice President at my firm.  I wanted to work on a winning Presidential campaign.  I wanted to sign three lobbying clients a year, pass some groundbreaking legislation, before finding a tall corn-fed Midwestern, Democratic politics and football loving labor union man, get married, move back to the hometown, have 2.5 kids and maybe run for office myself someday.

Let’s just say that my husband is a short, Republican Southerner… but he does love football and he’s a great husband and human being.

But those 2.5 kids weren’t as easy as my little sister’s easy fertility or my mother in law getting pregnant at 40 with my husband would indicate.

We spent a long time…three years… of pulling the goalie with no successful pregnancies before figuring out this wasn’t a good thing. 

So I started using the google to search for blogs with the phrases infertility, or IUI or IVF or Shady Grove SOMEWHERE in the text.  Anything to find a lifeline.

So what's my story? Sure. I had infertility coverage. After proof of at least 18 months of unsuccessful trying. That didn't cover any pre-testing. Or any drugs. Or any medically unnecessary blood tests or ultrasounds. And oh yes, my owned by a progressive New York media conglomerate firm’s best insurance option has a limit of $2000 per procedure, or $4000 over a lifetime.

And I know, beyond a doubt that I’m in a room of people who know exactly what that means. Not much. Not even the medicines on an injectible IUI. So we made choices, we all do.  We held off on vacations.  We went into debt, we stayed in our starter home.

But it wasn’t until I first attended RESOLVE Advocacy Day four years ago that the universe punched me in the face. 

If there’s one thing I want you to take awake from tonight other than a little buzz from that chadonnay, it’s this:  If you aren’t at the table, you are on the menu. 

If you aren’t at the table, you are on the menu. 

PEOPLE, we were on the menu.  We ARE on the menu.

And its high time we get seats at the table for some more people, because we need to rewrite that menu. 

So I started talking, YOU started talking. 

And you find out there are people dealing with infertility all around you. They are best friends and mentors. Old babysitting charges and old babysitters. They are the women who sit outside your office answering your phone, and 10 offices down in the massive corner office.

They are your Congresswomen, Congressmen, and even some of your newly elected Senators.

They are the women and men who hold their tongues, a lot. Sometimes they want to punch you. Or random mothers of 7 in Walmart.

They are happy when you get pregnant, but go home and cry.

They dread baby showers more than the dentist.

They cringe when you ask "Do you have kids?"... "When are you going to have kids"... even "Are you sure you WANT to have kids?"

A few years ago, the National Infertility Awareness Week theme was “Resolve to Know More”.  That’s the one that did it for me.

You know about IUIs and follicle counts and IVF and vanishing twins and late-term losses, and adoption waits and rewaits and damn you are an expert at waiting.  You know about paperwork and social work and marital work.

You’re way more comfortable with being naked waist down with a complete stranger than you’ll admit.

Tomorrow, you’ll speak to Congress about the facts: about personhood and adoption tax credits and support for our veterans and servicemembers, but my charge to you in order to make this real and tangible is to tell Congress about the story that you carry in your backpack every day. 

Tell Congress about the moment when you and your Dad discussed infertility through the spectrum of what was advertised in the bulletin for his Catholic church and maybe he thought you just weren’t timing things right.

Tell Congress about how you, as a person of faith struggle with a faithful place for your diagnosis and next steps and how personhood fits into the equation.

Tell Congress about how one of those random google blog searches for the word Shady Grove turned out to be someone you knew in real life and neither of you were talking about your struggles.

Tell Congress about how a military spouse and a librarian and a Floridian and lawyers and teachers and social workers and lobbyists and virtual strangers connect via Twitter to support each other's fertility journey, because it is the only safe place to talk.

Tell Congress about the rituals we all have.  The pineapple.  The lucky socks.  Switching from briefs to boxers.  What I ate for breakfast that day or didn't eat.  The shows I watched, and the twinges I watched out for.

Tell Congress about the friend who hosted a baby shower the day after a cancelled IVF round. Or the time you sat in a Pain Quotidien eating overpriced avocado toast and she wept and you wept with her.

Tell Congress about the ones you were scared to call when you were successful.  And the joy you felt when they were. 

Tell Congress about the Outlook calendar reminders you have set to commemorate friend’s losses, because you are the only one brave enough to speak about it.

Tell Congress about the time you fought for the 7am monitoring appointment, so you wouldn’t be late to work again… and the second job you picked up to pay to make that monitoring appointment possible.

Tell Congress about about the "fertidar".  The knowing someone is struggling just with the way they answer, the "Do you have kids?" 

Tell Congress how you can't believe you asked that to a new guy friend.  You have the sensitivity to not do it for the women, and are mortified you let it slip on someone who desperately wants to be a Dad.

Tell Congress about the race against time.  The vaunted age of 35.  The hoping your friends don't read these stories.  The hoping they will ask you advice so you can give it.  Unvarnished.

Tell Congress you know you got pregnant on March 3rd at 2:30pm, there were four people there, and it was too bad your husband couldn’t make it that time.

Tell Congress about how you had IVF at age 22 to preserve your fertility before going through those chemo treatments.

Tell Congress about your surrogate search, and the fact that you don’t want to find out the baby’s sex because it is literally the only thing in this process that has been a surprise.

Tell Congress about the story, financing, heartstrings, and courage behind the choice of adoption.

Tell Congress about about the soldier who lost motility due to a roadside bomb but still yearns to build a family.

Tell Congress about the feeling that finances control everything. The fact that you’d love a bigger house, any house, but you spent your down payment to build a family.

Tell them about the difficult choice you made to close your family building process and enjoy life without children

Tell them. 

This is a health care issue.  A financial issue.  A freedom issue. A family issue. Not a women’s issue.

Tell them.

Don’t let the political climate, the controversies in this city, your affinity or disdain for the politics of who are meeting with stop you.

Tell them.

You showed up.

It’s time to get out there, get off the menu and take a seat at the head of the table. 


There’s no greater work, and there’s no better group of people to get it done.

A minute of the speech?
https://twitter.com/ConceiveAble/status/865194221736779776

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