People With Passion

When I started this blog, at the end of 2008, I immediately decided to highlight and celebrate people who have a passion for what they do.  I started slowly and grew into blogging in the last 15 months or so, but I decided not to start the People with Passion page until someone inspirational came along.  That came along a few weeks ago, when the United States recognized National Infertility Awareness Week (NIAW). I clicked on a link mentioning Project IF, and found a film made by a young woman in Boston, telling her own story of infertility, how it has impacted upon her life and her determination to have something good come out of it all. I was alone in my home-office, but even while I shed a tear, I also put my hands together in a totally subconscious clap. 

I contacted Keiko Zoll right away to tell her how much I was touched by her film and asked if she would consider guest blogging for Your Great Life. Thankfully, she agreed. Even better, my idea for her first post, was completely in sync with Keiko's own mindset: her transition from infertility patient to women's health advocate. I urge you to visit her blog; Hannah Wept, Sarah Laughed, and follow her on Twitter @MiriamsHope.  She has a unique perspective and a voice all her own that draws you back to read more.

That's enough from me. I hand you over to this remarkable woman: Keiko Zoll; a person with passion.

I received the email at work. My jaw hung agape, the edges of my eyes blurring with tears. In just a few sentences, I learned I could never have my own children. I was infertile. I was barren.

I was twenty-six years old.

This was only just over a year ago. The first person I told was of course, my husband. The next phone calls were to my parents and my sister. Larry was on the phone with his family. We cried. We held each other. We tried to make sense of it all. I of course, turned to the internet. Surely there were answers out there for us. Surely, some webpage, somewhere, could give us hope. My initial forays were clumsy at best, a game of pitting Dr. Google's anecdotal evidence against more trusted medical sites. I read voraciously about premature ovarian failure and what I could do to increase my chances of being the 6-8% of women with POF who do conceive naturally. All of this information gathering left me with more questions, exhausted as I waited for my follow-up appointment with my doctor. The internet met my mental hunger, my cravings for more research, more data, more articles and jargon, but I was left reeling with my emotions.

That's when I found the infertility blogosphere. I read one blog, then saw the long list of other bloggers on her sidebar. I began clicking away, finding more and more stories of infertility. Some were ones of hope, others full of anger and bitterness. In these candid corners of the internet, I saw the corners of my own heart reflected back at my through my screen. I felt compelled to write, as I have so many other times during moments of strife, joy, and deep introspection in my life.

I learned the ropes of blogging. I kept my identity anonymous and my content vague enough so as not to trace back to my real identity. And yet, I shared my blog with my family and friends. I wanted to keep my identity a secret, but I wanted my friends and family to understand the painful etchings on my heart as I experienced this journey. I needed them to read, to understand.

I found other bloggers, other stories, other journeys: their winding roads craving paths of pain, joy, and peace through the internet. I commented timidly. I discovered the MOAB: the Mother of All Blogrolls, Melissa Ford's 2000+ listing of adoption, loss, and infertility (ALI) related blogs. I added my name to the ranks. I chronicled my experiences. I posted blood test results, musings on my faith, fights with my husband, and the desperate longing to have my own child. I got my first blog award, some more comments, more followers. People were reading, and were invested in my journey and my experiences.

Over the course of the past year, I struggled emotionally, reconciling so many different parts of my heart. I laid it all out in my blog for the world to see. I started reading more about infertility in the news, and posted a call to action in support of Senator Gillibrand's Family Building Act of 2009. I started following more advocacy alerts as they were sent to me by my local chapter of RESOLVE, the National Infertility Association. I felt pulled, drawn to spreading the word. I couldn't understand how there was so much silence befallen on a group 7.3 million strong in the United States alone.

We were vocal on the internet, yes, in our blogs and on our forums. But where was our ribbon? Where were our public service announcements? Where was our spokesperson? And then RESOLVE and Melissa Ford announced ProjectIF, a joint collaboration between a national organization and the growing ranks of infertility bloggers. We were asked to submit questions related to infertility that started with "What if..." and from there, asked to respond to those questions in a blog post during National Infertility Awareness Week (NIAW) last week. In all these questions, all these hearts laid bare, open, raw and beating, I heard a chorus of lamentations rising higher and higher. I knew it was time that our cries be heard beyond the confines of our computer screens.

The idea to make a video as response came instantly, and I set to work immediately, drawing story boards and writing a script. I started filming the first half by myself, with my husband helping me with the exterior shots. It was shot and edited in one weekend, and posted by Sunday night, the second day of NIAW. At first, a small handful of views. Then each day, the view count climbed higher and higher. It was being retweeted, posted on Facebook, embedded on blogs.

People told me this video is exactly what our community needed: a real face, a real voice, a real story. And yet, my video gave voice to questions raised universally by the ALI community. We've all felt them, wondered and doubted ourselves, trying to push these thoughts out of our heads but not able to let go of their weight on our minds. More comments, more support came pouring out of the woodwork. My blog and Twitter follower numbers doubled. The view counts climbed. My video was spreading all over the internet, and more folks reached out to me, looking for ways to collaborate, share ideas, to figure out how to spread this message that needs so desperately to be heard.

AsI write, I'm currently considering switching careers from higher education into health advocacy, which is huge for me. I always thought I'd remain in higher ed, but I'm realizing that the Universe is perhaps telling me something, and that I should listen. In this year, I have transitioned from just another patient, to an informed patient, researching and supplementing my doctor's advice with hard facts and data, sharing my findings with him. It's become a collaborate process. From informed patient I became a blogger, sharing my experiences at first with family and friends, and then a broader range of the internet. From blogger, I made a brief stop as filmmaker, capturing in visual form everything about which I've been writing. And now, I can comfortably say, I've transformed into an infertility advocate.

After working out the very personal ends of this, as I still do every day, I refused to let my infertility define or confine me. Instead, I advocate for awareness and recognition, for change and legislative action; I may not yet have beaten my disease, but I will fight as hard as I can so that others may become champions over their infertility. This is all uncharted territory for me, but I will keep pressing on with what I know how to do: write, speak up, and keep repeating the message until someone will listen. I've realized that for every blog or couple that is public about their struggles, there are dozens more who live silently. It is my responsibility to speak louder, to broadcast my message as far and as wide as I can. The silence can only be lifted when we are heard, and it's high time we bring infertility out of its silent darkness and into the light.

----- Keiko Zoll is an infertility blogger and advocate, writing at her blog Hannah Wept, Sarah Laughed. She can also be seen at BlogHerand WEGO Health. Her video, "What IF? A Portrait of Infertility" can be seen at RESOLVE's Infertility 2.0website. You can follow Keiko on Twitter @miriamshope. She lives and works in Boston with her husband of two years.

Comments

[Kaitlin_doody]

I love this piece! The patient to advocate story is just so inspiring, especially for a healthcare/digital media geek like myself :)

[Lisa]

Hi Kaitlin,

Thanks for your comment. I hope other people will also leave comments to Keiko's guest post. They may help me persuade her to come back another time. Please spread the word, or more directly, the link to People with Passion.