Monday, June 20, 2011

The One Who Tells the Story

"It's hard to be the one who tells the story..."

I quote another woman living with a similar condition, as she begins to tell us about her life. This first, simple phrase stayed with me long beyond the film, and almost a year beyond the conference. Because it is just so true. And because despite the difficulty, it is also so very necessary.

In just a few weeks, I will be in Seattle, surrounded by dozens of other women who must also be the ones to tell their stories. We sit in in a giant circle, seated in hard metal chairs. And each takes her turn telling the story of how it is she has come to be sitting there.

If I were to describe what is said, I feel like it would be a betrayal to these women. So many of them have had lives ten times harder than mine, and I find it difficult to fully comprehend the courage and grace that has helped them survive, and even flourish.

No one wants to be sitting there. Not really anyway. No one would choose this life, and these circumstances, these limits.

But then, there are the things that happen to us, that are beyond our control, and the things that we do in spite of them... While living in Cambodia, years before I discovered my diagnosis, I am grateful to have already learned this lesson in some small part. I have never seen so many people who, faced with so much suffering, still manage to live lives with so much joy...

And so it is with these women. Who despite never having the choices others have had, about their bodies and their futures, choose to live fully and not crippled by fear. They choose honesty. They choose openness. Whether it be to a few dozen in the circle, or to thousands. Because they are willing to tell their stories, they help the ones who are still afraid, and the ones who think they are alone.

I have been thinking about what I'll say this year. I may even write it in advance. I may talk about those I have told. Where it has hurt me. And where it has helped me and has deepened relationships, or just helped someone else feeling a little lost and misunderstood.

It is hard to be the one to tell the story, but I wonder too if it's an odd kind of privilege: To be the one who understands. The one who has had to learn more courage, more conviction, more compassion than she might have, were her story different.

Tuesday, June 14, 2011

AIS-DSD Annual Conference July 7-10

I wanted to follow up on my last post with a much more upbeat one, and mention how very excited I am about the upcoming AIS-DSD Annual Conference in Seattle, July 7-10.

I know of a few of you who read this blog who have NOT yet attended a conference (and might be a little bit intimidated), and a few of you who already attend. Whatever the case, please consider coming! (It won't be as scary as you anticipated!) Not only is this a great opportunity for education and support, but it is a fantastic way to meet dozens of other women and teens affected by AIS and other DSDs, as well as their spouses, partners, children and families. We have a tremendous amount of fun at these get-togethers. If that were NOT the case, I don't think anyone would go. :)

You will find some high-level information here, on the new AIS-DSD Support Group website (formerly known as AISSG-USA).

I hope to see some new faces this year...