July 23, 2010

A Belly Full of Fire, Part Two: The Wounded Healer

This is the second post of my five-part series on infertility advocacy. Catch up on Part One: Advocate or Abdicate.

Before I get started, I need to 'fess up about something kind of embarrassing. I thought I was being wicked creative with the title of this series, A Belly Full of Fire. Turns out, as I've gone through some of my research, this title isn't nearly as original as I thought it was. I need to fully credit Karima Hijane, Carly Heyman, Maureen Bell, and Mary Beth Busby's 2008 article from the Annals of the New York Academy of Sciences, "From Fire in the Belly to a Boiling Heart: Fuel for Participatory Research." When I went to start working on this post and leafed through my research, I felt like a putz when I saw their article title. But I like it, it fits what I'm writing about, so I'm keeping it.

"Some women... turn their pain into a passion to help others in similar circumstances. They become what has been referred to as 'wounded healers,' who can help others heal, and help heal themselves in the process."
Source: Amber R. Cooper, A.R., Baker, V.L., Sterling, E.W., Ryan, M.E., Woodruff, T.K., and Nelson, L.M., The time is now for a new approach to primary ovarian insuf´Čüciency, Fertility and Sterility (2010), DOI:10.1016/j.fertnstert.2010.01.016.

A Belly Full of Fire, Part Two: The Wounded Healer

I felt robbed. Cheated. Empty.

I would revisit the email from my doctor: "[The results], if they are to be believed, indicate that premature ovarian failure is the problem, not PCOS dysfunction/follicular maturation arrest as you, I and your previous caregivers had presumed." I thought that perhaps, maybe this time when I read it, the words would miraculously transform into "Nothing's wrong."

I started this blog as a way to channel these emotions, to fill some of the void that had been etched into my psyche. I found myself compelled to educate others as I started sharing research and informational posts. I wrestled with G-d for a little while, fighting battles between the lines, wielding my typed words as weapons and my faith as a shield. And before I knew it, the end of April had arrived, bringing with it my first National Infertility Awareness Week. I had all of this pent up frustration, anger, and anxiety, its kinetic energy boring holes into my spirit. Why not channel this energy, I thought.

The first thing I did was out myself on Facebook. The message stayed up there for about three hours before I chickened out and removed it. But in those three hours, I got three messages from friends of mine I hadn't talked to in years, each saying "I understand your journey because I'm going through it too." It was reassuring in ways that my blogging had not been. So then I reposted it with a sense of purposeful confidence. This was the first time I felt oddly positive about my infertility, in that I realized it could be channeled as an educational tool for activism.

I even wrote last April:

The ol' college activist in me is feeling inspired. I think it's because by involving myself in some kind of advocacy role, I reestablish a sense of control.

I keep pinpointing my video and this year's NIAW that launched my advocacy, but looking back through my older entries, I realize it started a year prior. My repurposed energy has refueled my spirit and sustained me through the darker times.

What I've only come to understand recently is that advocacy has helped to heal me. It's not like the emotional compartmentalizing, the escapist video game sojourns, the instant gratification of buying crap I don't need, or the diversional half-assed attempts to "find a hobby" or get in shape - advocacy has been like a bowl of chicken soup. It doesn't make the cold go away, but it fulfills you, helps you get better, and it's a welcome treat anytime you get sick.

I've had the privilege of being in touch with Dr. Lawrence Nelson at the NICHD, undoubtedly the leading researcher of POF/POI in the nation. He sent me the article containing the above quote and the words "wounded healer" resonated so strongly within me. Wounded healer is such an apt description for patient activists. If you take a look at even just a handful of executive directors of major infertility organizations and companies, they each have some deeply personal connection to infertility. With the silence that surrounds infertility, it only makes sense that former patients rise up to become leaders within the field.

Whether we are lobbying on Capitol Hill or connecting with other bloggers, we are each in our own way wounded healers.

The online ALI community has truly rallied around this concept, even if we don't formally call ourselves wounded healers. Things like the LFCA, blog hops, blog awards, online forums: we celebrate and support one another, we share tips and tricks and recommend books and websites. A friend comes to us and says, "A coworker of mine just told me she's about to do her first IVF cycle. Do you mind if I give her your information?" In helping to heal others, as Cooper, et al. notes, we heal ourselves.

It's about repurposing energy. Advocacy becomes a way of transforming pain into positive action. Suddenly you're finding little victories everywhere: your parents help you out at a volunteer telethon and send your organization a check for $250 (thank you Mom and Papa!). You get asked to guest blog or become a contributor. A senator to whom you sent a semi-form letter actually writes back and responds to your concerns, or their staffer calls you back when you leave a message to let you know that yes, your concerns will be passed on to the senator. An letter-writing campaign that you were a part of produces desired outcomes. These little victories add fuel to your reserves.

Are they an equivalent check and balance for a loss or a negative beta? Of course not. But at least you're not running on empty. And you use up that fuel to propel you forward, to keep you going.

I'll speak plainly: advocacy has saved my life. I don't walk around feeling so effing empty. I sat myself down and told myself if I can't create life, I can at least create purposeful living.

. . . . .

Today I wrote about advocacy as a way of personal healing. Take this weekend and invest in a little healing of your own. Come back Monday when I'll talk about how you can figure out what advocacy style best suits you.

Stay tuned for A Belly Full of Fire, Part Three: Which Direction Do We Swim?.

Photo by Clay Junell via Flickr.


Jennie said...

I (selfishly) love the way your blogs make me feel. The make me feel empowered, and like that wounded healer. Keep doing what you do

Nine said...

Spot on. Healing ourselves gives us the knowledge to heal others. Healing others gives us the courage to heal ourselves. (Rinse, repeat!)

The idea of the wounded healer is so piercingly sad and beautiful. It resonates very deeply with me. Thank you for sharing this image.

Mrs.Tiye said...

This is EXACTLY the reason for my blog too. It gives me some of my power back. There are times where things aren't going well, or my advocacy doesn't seem to be reaching the people as much as I want...which in a weird way makes me feel infertile all over again...but then I get a message or a look from someone that reminds me I'm no longer doing it just for me anymore, and I get my energy renewed.

I'll keep going as long as you'll keep going Keiko!

Anonymous said...

Another great, inspiring post that resonates with many - including me. Yesterday I spoke with my counselor about why I feel guilty for having this disease. She said it's all about control. Advocacy is by far a more positive way to take control.

Hurdles of Life said...

Your absolutely right.. writing/blogging/"coming out" can be healing, not only to yourself but to the rest of the IF community.

You inspire people, you inspire me.. to keep writing, keep sharing my story... because it isn't about sadness or anger.. its always been about Hope. xoxox

DaisyGal said...

this is a beautiful post and I often feel like you do, but in a much smaller way. I don't do as much as I should/could to advocate but I do talk about my IF all the time in my Real life. I want to spread the word and it does help me to deal with all the feelings I have about our struggle, even getting to the other side.

It's so true that the best healers are the ones who have suffered with the one thing they are helping others through.

THANK YOU for being such a STRONG , wonderful voice in our ART/IF world. I am so proud and glad to know you.

Sonja said...

Love you! I gave you a blog award to get more people to come read your awesome blog!


jill said...

I can't believe I am just now finding your site (I'm kind new here). Thank you ICLW! I just made a link to your What IF? video on my blog. Thank you for all your words, calls to action and time devoted.

Grace said...

thanks for doing what you do...it is so important and i'm thankful that you take the time to speak up and advocate for others who may not be as brave...

happy iclw :)

Chelle said...

From the moment I stepped foot in the infertility clinic the first time, I knew my path would be to take my experience and share it to help others on their journey. I chose not to internalize it and let it wither me away to nothing but a bitter infertile, but rather to help educate those who don't know what we go through as infertiles and to provide hope to those whose struggle.

I loved this post. You are an exceptional writer.

Anonymous said...

Buddhists call this turning poison into medicine.

You, my dear are a Bodhisattva of Infertility!

Katy said...

Found you through ICLW!

This post makes me feel like I finally have a name for what I've been working so hard to do. Whether in the world of loss or infertility, I'm a wounded healer. It feels good to have a name. Advocacy is power.

Krissi said...

WOW! I didn't think I'd get through both your posts and the 2 articles that you linked to but I did and I'm glad I did. I am bothered by the statement in the article that women "Want to forget" or 'are too busy with their children to be advocates' once they succeed. Because I am trying to be an advocate by writing my blog and yet, I have succeeded. I now have a toddler and infant twins and I know all about being 'too busy' but I make the time because it's a cause that speaks to me and is so important. I feel that I have given the pain I went through purpose and reasoning some how by doing what I do. And yet I know it's true that many do turn their heads the other way when they have crossed over.
Anyway, I just want to say that I am thrilled for your efforts. I think your work is highly commendable! You rock! Happy ICLW! (#45 & 46)

Anonymous said...

I love this series! Totally sharing it with all my friends - thank you!!!