2024 update. YES WE ARE STILL DOING THIS. Seven years later. The legislation is terrifying. The Court Rulings are terrifying. Don't let your family resolution dull your advocacy. We are in important times to claw back basic health care rights.
How can you get involved? Here's a launching place: https://resolve.org/ Happy to message offline if you want more ways in your state or family situation.
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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. Or those 19 kids (and counting) on TLC.
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
Wow, nicely said. You can lobby for me anytime.
ReplyDeleteMy daughter has to do IVF if she wants another child because of her being a carrier and her husband being positive for the mutation of the RYR1 gene. Genetic testing will pick the perfect embryo for them. This breaks my heart that this is happening in Alabama.
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