I’m always looking for ways to quietly….passively….raise awareness about MRKH, and the Beautiful You MRKH Foundation of course. I wear t-shirts in hope someone will ask “What’s MRKH?”. I wear my lightweight Courageous jacket a lot during the spring and fall. And now, I have my Courageous backpack too! I always hope that maybe someone will recognize the logo and even if they aren’t brave enough to come and talk to me, that at least they know they are not alone.
Sometimes it’s lonely being 1 in 4500. I have to remember that many women never get the chance to meet another MRKH warrior, many don’t even think of themselves as warriors. We suffer in silence, not aware that we have a voice. It can be very isolating, really. While I make it a point now to get together with MRKH warriors wherever I go…it wasn’t always the case. I simply didn’t know they were out there. I didn’t know where to find them, or even that they existed! But now that I’ve found my voice, I’m pretty sure that I’ve misplaced the off switch!
Over the past couple of weeks, I’ve had the opportunity to travel around Washington state a bit. I’m meeting with students from the program I work with at the university, doing a final seminar with them as they are completing their exit portfolios. As an ice breaker activity, I have a power point I do with them the involves me asking them to answer 20 questions about ME. They are a bit baffled as I’m asking them questions like Where did I go to high school, how many years have I been married, what’s my dog’s name, and have I ever flown a helicopter…but they enjoy it. The point of the exercise is to encourage them to make deeper connections with people in their professional life, to pay attention to the little things, to make an effort to be more gracious, caring, and empathetic to what makes each of us who we are.
With a bit of trepidation, I altered my power point this term to give a more thorough answer to question # 12 Do I have children? I used to just have the answer as simple, “No, but I have nieces and nephews that I adore.” So now I have an animated slide with a couple simple bullets on it:
- No, I have a congenital form of infertility called MRKH.
- I was born without a uterus.
I talk briefly about being diagnosed at 18 years old, and never meeting another woman like me for over 25 years, even though 1 in 4500 world wide has MRKH. I tell them that I want to remove the shame and raise awareness and so I’m working with the Beautiful You MRKH Foundation to do just that.
I don’t linger on it, but I do watch their reactions. Their shock, their awkwardness with me saying “uterus” in this kind of a setting, and usually then followed by their acknowledgment and maybe even admiration for speaking out about my own diagnosis.
Last night, 47 more people heard about MRKH – and maybe at some point they will meet someone else who also has MRKH, and they’ll be able to say – you aren’t alone I know someone else just like you. That’s my hope anyway!
This weekend is my first fall craft show of the season, and I’ll be putting myself out there again for the world to see. Day by day, week by week, I’m getting more and more Courageous and I’m getting my products out there in the public. Setting aside my fear for the day, to provide a voice for MRKH and the Beautiful You MRKH Foundation through my Courageous Project.
So I’ll keep wearing t-shirts, jackets and backpacks, and I’ll keep putting beautiful soap and body products out there, and hopefully someday, I’ll make a connection with another MRKH woman who has not yet learned about the power and strength, and COURAGE of our sisterhood!