Good morning.
A few days ago, I caught a snatch of an old Bob Dylan song
and a particular lyric has been on an endless loop in my head ever since "he
not busy being born is busy dying."
It encapsulates the ideas that I was coming here to speak with you about
today. Of looking back while building the
future, of focusing inward while functioning in a larger world, of finding that
place of balance.
As children, we're very future focused, we say things
like: "When I grow up I'm going to
be a princess...an astronaut...a doctor...a mother " As we become adults and go through something
as devastating as infertility, we look backwards, questioning every choice
we've ever made: the boyfriend we stayed
with for too long, the annoying symptom we ignored. We focus on getting to
acupuncture appointments, and the drop-off point for an overflowing red
container of used needles and stop thinking about tomorrow. For me, for whom working on my
"causes" was always something of an obsession, I buried my fear of a childless future, shame at not being able to do the one
thing women are uniquely able to do, and anger
at having a lifetime cap of $10,000 for infertility related expenses, in
working to get meaningful legislation passed to help wannabe-families who are
overwhelmed by the financial burdens of necessary treatment.
But in doing so, I lost my balance. Ten cycles, 600+ injections, one black and
blue mark - over my entire torso, four miscarriages, ten extra pounds, three
REs, 25 or 30 peeping toms... I mean
fellows. Priceless. Well, actually, the price, losing my sense
of self worth - along with the pricetag - was what brought me here today.
Like many of you, wherever you are in this "journey",
I heard "let it go", "move on", "everything turns out
the way it's supposed to be", or "I KNOW this will work out for you".
It stings, doesn't it? How the hell does anyone know that's it's all going to
work out? After all of that failure in
the trying-to-have-a-baby sphere, I got "separated". Not having a book deal to allow me to buy
a house "under the Tuscan sun", or travel to Italy, India and Bali, I
had to try and figure out how to eat, pray and love under the shadow of the sunless,
gray, sooty Manhattan skyscrapers, all by myself. And for the last few years, admittedly,
trying to pay the infertility debt off, lose the weight, gain back sensation in
my butt after all of the progesterone shots, and start dating again - I'm pretty wobbly.
I've given up dating for now - sorry, no funny stories ahead
- and instead have been concentrating on yoga, as therapy. Has anyone heard the teacher start off class
by saying "press your feet into the ground"? I always wondered what that meant, I mean,
doesn't gravity do that for you? But as
I started to think about balance, I have started to understand a little bit
more about what that means. We'll get to
that.
I knew, even when I suspended my active efforts to conceive,
that I wasn't going to stop working to secure financial relief for infertility
patients. But, was my obsession with my
volunteer "fix the world" activities getting in the way of succeeding
in the more mundane, but vitally necessary parts of my life - professional
success and even a "love life"?
Over the years, some of you have heard me express frustration
that more patients don't get involved.
This year, however, we have more participants in Advocacy Day than ever
before. I am so proud of all of you. I have spoken with many of you about your
reasons, even after resolution, for continuing to fight for the rights of
others. One advocate, who first had to
figure out if she had childcare, if her
family budget would allow a trip down to DC and a hotel stay, said to me she
does this because "If one more couple had access to fertility treatment,
and someday down the line I was able to hear about it, I would say, that's it.
One hair of a difference." You stand
as a model for balance, about taking care of your family and yourself but
continuing to fight to protect and expand the rights of the one in eight
families diagnosed with infertility, a lesson in balance that I am only now
beginning to understand, taught by Hillel, a Jewish sage in the time of the
Roman Empire: "If I am not for
myself, who am I? And if I am only for myself, what am I? "
The dedication in this room in unparalleled. The woman whose septum prevented her uterus
from holding a pregnancy and after
suffering multiple miscarriages, adopted two children from Guatamala, fighting
cultural differences, red tape up the wazoo and leaving her children behind for
months until they could finally enter the United States
As I look back on the role I'm confidently passing on to
Whitney Anderson and Jen Rutner, I am proud of what we've accomplished since
2008, when I first became Advocacy Day chair.
The lobbyists in the room (raise your hands) can tell you that things
happen very slowly on Capitol Hill, that activists wear the soles off their
shoes on the hard floors of the Capitol office buildings to stop atrocities
like "drive by mammograms", or spend years sharing the hardships of
losing one's job while caring for a sick family member to get the Family
Medical Leave Act passed. Look at the
thousands of dollars that needed to be raised, the petitions that needed to be
signed, the rallies on Capitol Hill that needed to held, just to get the
Violence Against Women's Act re-authorized!
Our cause is no different. But
let me tell you about some of our successes:
we got reporting language in an appropriations bill to have the CDC
provide Congress with its progress on infertility study, the CDC has recognized
infertility as a disease, last year, the tax credit for adoption expenses was
made permanent. We have seen change in the way infertility is discussed on the
Hill and far beyond. While you may still see some young staffers, who are more
concerned with preventing pregnancy, blush, while you discuss your ovaries and sperm
counts, it's a disease that is no longer in the closet. And we've also learned how to talk to
Congress. As legislators start to
understand the need to educate cancer patients about fertility preservation
(which has already passed Congress), and the need to assist our veterans
injured in the line of duty build families, they will learn why access to
affordable treatment is critical for all Americans. Just Monday, the suggestion regarding "Creating a tax credit for the costs of
in-vitro fertilization treatments" made it into the suggestions to the House Ways
Another thing that keeps
so many of us off balance is keeping our infertility a secret. Keeping secrets about something so
fundamental prevents us from establishing a sense of self; a balance in our relationship between our
public and private worlds; an identity. Let’s face it, infertility is just
debilitating in every way. As one friend, said to me, "the pain is
magnified by every pregnant woman and every friend who has a second or third
baby on schedule. It's easy to become
bitter." I’ve found that no matter how successful, no
matter what women have accomplished in their life, when they get together
instead of talking about the world, politics, business, all they want to talk
about is their kids. And you just sit there silently. If you mumble something about having a
problem, often, instead of compassion, you get the “oh, I know someone who had
that and they just did some acupuncture and they got pregnant” or “why don’t
you ......[just relax]”.
In a world where
people post photos of their dinner on Facebook, it's amazing what people choose
to keep secret and the hazards to each of us individually and as a community, of
doing so. On a personal level, I found
great comfort in sharing my secret with the friends I made through the computer
or in the Cornell waiting room, and some of them are here today - thank you.
You comforted and empathized with me, made me feel less alone, and I rely on
you and reach out to you at my lowest
moments. And on the public level, the national stage, by talking about
infertility, telling our stories, we will see change. We saw how this strategy worked, to first de-stigmatize
and then raise awareness, to gain research dollars and federal insurance
protection for breast cancer treatment. And in the last year, in the last few
months, in fact, we have seen a world of change as more and more members of the
House and Senate have shifted their stance on gay marriage as a consequence of their sons and daughters admitting their
sexual orientation to their parents. Imagine
if your boss, instead of haranguing you for being late every day for two weeks
while you went for daily blood draws and ultrasounds, actually went to HR and fought for the company
plan to cover your treatment? Only when
this disease has a face, will others understand.
And finally, by keeping
it secret, you’re fostering the myth that you can have children later in life,
instead of urging younger women to take advantage of the technology that allows
them to freeze their eggs in their early thirties. By speaking out, you may just help one
person, one person who will not suffer.
After a certain age,
being childless invites the judgment of acquaintances and the general public. How do you feel when you read a newspaper
story about a tragic death, and somehow the story centers on the fact that the
deceased was “the mother of two young children”, as if her life is somehow
worth more than yours or mine simply because she is a mom. It shouldn’t be that
way, but somehow it is. So if news of my
untimely death as a childless woman is less newsworthy, less valuable than that
of the mother of two young children, why isn't my quest to treat my disease covered
or reimburseable, so that I too, can become a mom? It’s these feelings, this sense of
inadequacy, of not really mattering. that throw you off balance.
So as you do this work today, how does it affect YOUR
identity, your sense of balance? By stepping off the sidelines, you are taking
a huge step towards finding your balance. You have converted yourselves from
frustrated victims to activists, directing
your biography. I hope many of
you succeed in your quest to become parents.
But as I've learned from speaking with so many people who have gone
through treatment, regardless of whether they become parents or not, this
experience, this disease, remains a part, but hopefully not all, of their identity. Bitterness?
anger? I'd be lying to tell you that it won't exist. Your self esteem,
however, will come from what you do with it
I had lunch with a new friend a week ago. She too, went through numerous
IVFs and miscarriages before adopting her daughter. She described sitting on the beach and always
noticing the women with black and blue marks on their legs or their bellies and
knowing what they're going through, how she just wants to walk over and hug
them. Experiencing infertility, I'm
sure, has increased your compassion for
the struggle of others - whatever their challenges may be. But it is not
enough, I urge you to remain part of the solution. To continue to fight for
those still suffering. To feel proud of
standing with your community. To be part
of this movement. To own it. And to those of you who succeed in your quest to
become parents, I hope that you too,
remember this community, and share your gift by continuing to advocate on
behalf of others.
As we talk about our own identity and losing the sense of
shame, let's not forget the identities that we are building for our
children. If children are old enough to
know "how babies are born" in the old fashioned way, should there be
something shameful or secret about how more than five million babies were
conceived since 1978? Shouldn't scientific
advances be celebrated publicly, and our children speak with pride about how
badly their parents wanted them? I met
someone whose son was a product of infertility treatment. His 11 year old daughter, for a school
assignment, did a presentation on how babies are born through IVF. After all, that was part of her family's
creation story, right? The parents
received the following email (names omitted):
"I was thrilled to view [your daughter]'s project
tonight. She, as always, did an outstanding job. I also forwarded a copy
of [her] presentation to [a supervisor, who] too enjoyed it but felt the
subject matter may raise some questions that some parents are not quite willing
to, or ready to discuss with their children. I would however like to have
[your daughter] present her project to a small panel of teachers as I feel she
has earned it."
Why was this student deprived of her moment to stand in front
of her peers and present her "outstanding" work, and receive their
applause? If more spoke out like she did, and made infertility into just a
disease that needs treatment resulting in an alternative family building
method, rather than, as her teachers did, a subject to be discussed only behind
closed doors, more legislators would be inclined to support our needs. Infertility patients, by staying "in the
closet" have not helped their cause with their friends, families and
children, their employers, younger women, and certainly not on Capitol Hill,
where change only happens when those needing rights, stand up and demand them.
So now, as I press my feet into the ground, I think about how
I've taken care of my needs by identifying the friends who support me and who
help me accept living with a disease, even as it wiped out every dream I ever
had. I find strength from the pride in what we've already accomplished and the
foundation we've built to go forward. And
only then, do I lift my arms towards the sky and think about the future, the
new goals I'm setting for myself personally and what I can do to re-dedicate my
efforts to our mission, and my belief that with Jen and Whitney's leadership,
and all of your continued efforts, we will achieve our goals.
And as my body stretches simultaneously in both directions, I
find balance. And now, a deep cleansing
breath.
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