Friday, March 7, 2014

21 guns: three years later

"Sticks and stones never hurt my bones. Words did, a little. But taking away my womanhood ruined me."

It's been nearly three years since I wrote those words, and I still remember the raw and powerful emotions I felt that day after engaging in a long (and, I'll admit, relatively pointless) battle with PETA regarding their infertility awareness week campaign. I was angry. I was hanging on by the end of my rope, and I was sick and tired of people and organizations kicking me, kicking all of us, while we were already down. I didn't know how much more I could take.

A lot has happened since then.

Despite my exhaustion, I did keep fighting – on both sides of the fence. I continued advocating, using my voice and my blog to try and raise awareness about infertility. I gave interviews. I spoke at conferences. I volunteered endless hours of time for "the cause." On the other side, I also continued the fight to build our family. We saved and studied. We pulled our resources, and we embarked on our journey to adopt.

Now, looking back, I feel as if I only had success with one of those fights.

Yes, shouting from the rooftops about my disease landed me in a few news articles and won me an award, but it also led to plenty of personal criticism. It led to people cutting me out of their lives. And, frankly, it didn't make a difference in the overall perception of this disease. No laws were passed. No groundbreaking insurance coverage or medical treatments. People, even those closest to us, still treated infertility with ignorance.

It's a frustrating feeling to work hard at something, anything, that will make a difference in the lives of yourself and others and feeling like – at the end of the day – everything is still the same. Imagine you start knitting a blanket. Then, three years later you look down at your lap and that blanket you've been trying to make is still a few rolls of yarn. Only this isn't a blanket. This is your health. This is your emotional well-being. This is your life. I look at my post from that day, and I don't feel any differently about my advocacy efforts now versus then.

So, what was it all for?

I think I felt better for sharing it. It made me feel like I wasn't so trapped behind the walls of this disease. It made me feel like I was doing something about it, even though no real change resulted from it. It made me active instead of passive. It kept my mind busy and gave me something to work toward.

The problem is that now, while I still feel called to fight against the stigmas that come with infertility, I feel like that "something to work toward" is missing. What now? Where do I go from here?

Part of this uncertainty comes from being on a different side of infertility. Not only have I resolved my journey, but I did so without medical treatment - which is what most advocacy efforts focus on. Yes, I would love to see medical coverage for infertility, across the board; however, I don't have the personal experience with IVF to speak to that cause. I can only truly speak to what we went through with adoption, which is a completely different can of worms. (One which, when opened, also leads to much criticism and debate.)

The other half of my uncertainty lies in wondering exactly what let me to write that post in the first place: Do we know what's worth fighting for? - Especially when no one fights FOR us. Diseases like breast cancer and diabetes have advocates who aren't afflicted personally, but who have watched those they love fight those battles. They have ribbons and campaigns that millions contribute toward. They have the world on their side.

Infertility doesn't get that same level of support from those who simply KNOW someone affected.

And I'm beginning to wonder if it ever will.

When you're at the end of the road
And you've lost all sense of control
And your thoughts have taken their toll
When your mind breaks the spirit of your soul

4 comments:

someday-soon said...

I think the more of us willing to talk, without shame, about our IF journey the more mainstream support it will have. One person can't flip the switch but hopefully over time we will see real change happen. You have been a wonderful voice for the cause and I hope you let yourself feel proud of that. And even if it just helped you process your journey that is enough good to have been done. You rock =)

Glass Case of Emotion said...

I was thinking of this post when I wrote this one, though I didn't go to the specific places you did...
http://alittleblogaboutthebiginfertility.wordpress.com/2014/03/14/good-bye/

I had been thinking of going to Advocacy Day this year too, but I feel like, I just need some space from Infertility for now. It's frustrating to feel like it can be such a lost cause. I think if my personal story had gone differently, I would have more energy to take up the cause. But right now, I feel like I want to just live my life which is something IF takes away too.

Anyways... just some thoughts!

foxy said...

So I work in politics, and I can tell you that building political will for change is HARD work that takes TIME. The reality is that the interviews you gave, the stories you shared, your willingness to so openly share your experience DOES make a difference. It isn't always a difference that can be seen, or felt, but it is real.

Your advocacy empowered me to challenge my employers infertility policies. My advocacy is stronger because of your advocacy.

Your willingness to share your name publicly empowered me to talk more openly about my own experience. And my disclosures have led others to share their experiences, and together we are stronger as advocates.

I'm not saying that you need to keep fighting, but I do want you to know that your efforts matter, they mattered to me, and to my boss, and to my employer, and to my baby class friends, and to my family.

Pass the torch, but know that it burns brighter because of you.

awomanmyage said...

You have the weight of the world on your shoulders because sharing what you have cost you something personally, emotionally. But you alone are not solely responsible for the entire world to change. It is all of ours. Every voice in a choir matters. What you have accomplished is like planting a seed, and seeds need water and sun and the right earth.....and time. Do not be discouraged. If you made a difference to just one person, then you have accomplished a great deal. It sounds like you have.