Monday, March 17, 2014

and, i'm done

I logged into Facebook this morning to see a post about being in the middle of adopting a child, yet still wanting a child of "my own." I'm not going to go into details about where this post was made. I'm sure many of you saw it or have seen it, and I also don't want to rail on the organization that posted it because it is one that supported me throughout my journey with infertility.

At the same time, I cannot ignore the post, the intervention on it that was possible from the hosting organization, or the conversations that took place because of it. It frustrated me. It angered me. Perhaps more than it should have, but perhaps rightfully so. Regardless, it made me think about many things, some of which have already been stewing in my brain for several months. And, as a result of this thinking, I've reached a conclusion:

I'm done. This is good-bye.

From this point forward, I will no longer be using this blog for infertility or adoption-related advocacy work. It will remain open, but I am moving on from this space.

The truth is that this has been a long time coming.

I think we can all agree that it is not and never will be okay to attach certain wordings and stigmas to those who are infertile and who seek certain medical interventions. I have fought these for years, even after I chose an alternate path to building my family. We have all fought for this. Word choice is as important, if not more so, than the intent behind it. We ask others to avoid saying certain words and phrases associated with infertility because they are hurtful and ignorant. Because they don't have truth or understanding behind them.

However, I have also stood back and watched as my path, and the other, alternate paths of my peers, have not been supported and/or advocated for with the same passion and intensity. I have watched as some of these same individuals who I've fought alongside to try and change the conversation about infertility have not fought to change the conversation about adoption. In fact, they have participated in these inappropriate dialogues and/or defended others who have, as well.

Today's Facebook post was a prime example of this. It pushed me over the edge that I was already standing on, that being: I cannot continue to advocate for a group of individuals and their decisions when, in many cases, those same individuals do not advocate for me and MY decisions. How am I supposed to reconcile fighting against stigmas associated with my path to family building with "outsiders" (non-ALI community members) when I can't even reconcile it with people in my own community or peer group?

The answer is that I can't.

I cannot change the conversation about adopting after infertility when there are people in my own support system who can't or aren't willing to change the conversation alongside of me. It makes any sort of progress next to impossible. And frankly, it makes me feel completely defeated. I feel, and have felt, defeated for quite some time now, and it's led to this choice. A choice I didn't make lightly. This decision to abandon my work and my blog hurts. It hurts to leave behind this space and everything that happened here, but it hurts far worse to stand for something and not have that something stand behind you, too.

I don't know what's next for me. As I said, I'd love to continue writing in some capacity. Blogging has been such an integral part of my life now for the last 5.5 years, and letting it go will be difficult. Yet, I also think a break is wise. If I do decide to continue writing in another space, I will post that information here.

The last thing I want to do is end this on a sad note or a note that implies that stopping is anyone's decision other than my own.

So, instead, I will end with "thank you." To those of you who have stood behind me all of these years... I love you and I cannot accurately express how much your support has meant to me. You were there for me when I felt completely alone in the world and didn't know if I would ever become a parent -- something that even some of our family members and closest friends weren't able to to. Thank you for believing in me. Thank you for encouraging me to move forward for as long as I did, not only toward having a child but toward self advocacy and changes in the way our disease is treated. Thank you for allowing me to be a part of your journeys.

Most importantly, thank you for your friendship and for your courage. I have never met a more inspiring group of men and women than the friends I've met in this community. Keep fighting for as long as you can, and I don't mean that in a "keep fighting for kids" way. I mean that in a "keep fighting for yourselves" way. You are all powerful people. Your stories are important. Don't lose sight of this, regardless of where your journey takes you.


Tuesday, March 11, 2014

new city, new doc

Starting over with a new doctor is hard for anyone. Starting over with a new doctor when you're infertile and have a medical history that prints out longer than Ulysses is a nightmare. You worry about picking the right person. Does she have any experience with infertility patients? Will she think I'm a quack? Will I think she's a quack? Will she be insensitive about certain topics?

These were just a few of the questions on my mind last when when I arrived at my first appointment with a gynecologist here. The poor woman was clearly prepared for a quick, 15-minute check-up when she entered the room. And then we started on my medical history.

An hour later, I had my exam. Oops.

She's the first female gyn I've had in years. I was particularly nervous about how I might like her personality, which I find key in whether I'm going to stick with a doctor. But she was very straightforward and matter of fact. She didn't scold me for not being on birth control, despite infertility. She didn't make jokes about getting pregnant after adopting. She was exactly what I wanted: no nonsense, no bullshit.

After going through everything -- the infertility, the endo, the cysts, the breast lumps, the surgeries -- we talked in length about my pain management and decided that it would be best for me to go back on progesterone. We needed something that would manage my pain and put off another surgery while also limiting my risk for breast cancer and lowering my risk for endometrial cancer. It's not ideal, but progesterone can do all of those things for me, and I've had success with it previously.

My breast exam was clean, and I'm still waiting on my pap results. Overall, I would call it a good visit. No bombshells or major surprises, which I'm always ready for at these appointments (and which my blood pressure gave away). Now, we just "wait and see" whether the progesterone works or whether we move on to other options.

And I rejoice on having found a decent doctor on the first try.

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