I
am honored to stand here before you for the third time chairing RESOLVE's
Advocacy Day on Capitol Hill. And I am thrilled to welcome all of you to
DC and to thank you for breaking into your personal lives and obligations to
make time for this effort. As most of you who have attended previous
Advocacy Days know, I look at all of you as my dear old friends and speak with
you about the most personal issues that we all face. This year will be no
different.
As
a child, I played with Barbie dolls, was a cheerleader, worshipped Gloria
Steinem (even wearing my hair like her), read Cherry Ames books, planned to
have a career as a lawyer and live in a cool NYC apartment for a couple
of years before getting married and having children (which, of course wouldn't interfere
with my career trajectory). There was no part to any of that biography that
seemed inconsistent. My recurring childbirth fantasy was that my water
was going to break on the steps of the Metropolitan Museum of Art and good
Samaritans would help me into a cab that would hopefully get me to the hospital
before I gave birth in the backseat. Whether my husband would actually
get there in time for the birth was never quite clear in those fantasies
because I fancied myself as the independent wife who wouldn't drag my husband
out of an important meeting for something as mundane as childbirth.
Lately,
however, my thoughts have been circling around a line from a tv show that goes
something like this: there comes a time in every man's life where he realizes
that he is never going to be a professional baseball player. Although I'm
not a man, and never desired to become a professional baseball player, I am
coming to the uncomfortable realization that I have reached that exact place in
my life.
Now,
without a husband, and finding it about as likely to be giving birth as
pitching for the Mets in the 2011 World Series (or for the Mets being in
the 2011 World Series), I am trying to figure out who that face staring back at
me from the mirror is.
This
is the crossroads that I find myself in personally, and like Yogi Berra facing
a fork in the road, I'm just trying to take it.
Infertility
is an identity-stripping disease. Having a baby was always part of your
biography, I'm sure, from your earliest memories, right? But now, the very
essence of how you picture yourself is drastically changed. Now, instead
of worrying about a bikini wax for that romantic Caribbean vacation where you
intend to conceive your first born, you realize that your doctor (and the 12
interns staring between your legs) really couldn't care less what's growing
where and you barely even bother to shave your legs. A diagnosis of
infertility forever redirects every romantic fantasy of conception you ever had
to a new-found skill at stripping into a paper hospital gown in record time.
It
also makes you confront motherhood in an entirely different way. For many
women, it just seems to happen. For us, we never stop thinking about how
badly we want it, how many financial resources to allocate to it, how many life
choices we will defer or forego to do so, whether we're physically, financially
and emotionally prepared to follow every path available and handle the risks
associated with every decision.
Even
success, I'm told, doesn't erase the scars that infertility brands you
with. The pain of cruel jokes or insensitive useless advice. The scolding
that there are already too many children in the world and this is part of God's
plan. And the choking feeling you get
when someone announces that all their husband has to do is look at them and
they get pregnant. But for those of you
who have had success and still made time to be here: an extra special thank you
for not abandoning this cause.
Wherever
you are in this process, I know how hard it is for you to be here. How hard it
is for you to identify with this disease that has stripped you of your
identity. How hard it is to say "I am infertile".
I
don't need to tell you that although women make up more than 50% of the
American population, women's voices are grossly under-represented in every
agenda-defining political, business and community organization across the
country.
We
like to say that infertility is not a women's issue, but a family issue.
And that's true, the disease affects men and women equally. But this is a
disease that most guys are just not comfortable fighting for - although I am
awed and inspired by the men who are here - please proudly tell your friends
that we're not all hormonally charged crazies! But ladies, it is mostly up
to you.
So
I want to talk to you today about finding your voice.
We
like to think of the United
States
Most
other diseases don't just have support groups for those with the disease, it is
part of the social contract to contribute to the cure and treatment of
others with the disease. Every day, I am asked to sponsor somebody
participating in some "race for a cure". How many of you get
the same requests? Were any of you bold enough to ask for sponsors for your
travel expenses on your Facebook page? Or ask any of your friends to even write
a letter? Or even tell anyone where you are and what you're doing? I never was.
As I said to all of you on the training phone calls, I have never told people in past years that this is the most important time ever for your participation - and in fact, I did not say that at past Advocacy Days. Hearing the same thing year after year from spokespeople from other charities and organizations I've been involved with has inoculated me from believing those words have any meaning. But I'm saying those words this year: THIS IS THE MOST IMPORTANT ADVOCACY DAY THAT WE HAVE EVER HAD.
Let
me explain why: In the last few years, we had started to make some real
progress. With the introduction of the National Action Plan at the CDC,
by which all of the stakeholders, including the patients, insurance companies,
employers, researchers and the medical community would be brought to the table
to address the disease of infertility, we thought that infertility was finally
going to be addressed as the mainstream disease it is; that infertility
patients would no longer be marginalized and ignored; that the shame of this
disease was finally going to be lessened.
Furthermore,
with health care reform on the table, we were finally beginning to get members
of Congress to pay attention to infertility. Last year's Congressional briefing
on infertility hosted by RESOLVE was well attended. Even the Washington Times
wrote about it!
All
of this progress has come to a screeching halt following the 2010
election. There is a movement towards paring down health care coverage
rather than expanding it. Budget cuts make research dollars more scarce.
And the CDC has "officially" stopped work on the National Action
Plan.
Today,
we plan to reverse this trend. Your voices, together with the voices of
volunteers across the country who are meeting with their representatives in
their local offices, are being raised to tell this new Congress what it is that
WE NEED FROM THEM.
My
politically incorrect Barbie dolls still litter my apartment and my parents'
home. I was saving them for my daughter. The daughter to be named after
my grandmother and a very special aunt, the daughter that I will never
have. It is in honor of the memories that I don't get to have that I am
here fighting for the chance for others to have access to affordable treatment
for infertility.
I
want you to think about all of the diseases you've experienced personally or
through friends and family. I want you to think about how you or others
have been affected by those diseases
but how your infertility has redefined how you see yourself and how you
relate to every one else in the whole universe. How unfair the unwarranted
shame and loneliness has been. I want you to think about your own goals
and dreams and self definition and for some of you, the retirement village in Florida
And
on this Sunday, when everyone else is celebrating with flowers and chocolates,
I want you to celebrate finding your voice and the steps you've taken for
yourself and mother wannabes across the
nation.
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