MRKH Conference

Here’s the thing… Since I was 16, I’ve known that I am different than most women. I like to talk about poop and farts, I like beer, chicken wings, football and I really like to burp.  Just kidding (kinda, but not really). I’ve known I am different because I cant join in the following conversations with other women:

1)      Do you have a tampon?

2)      Are you worried about getting pregnant?

3)      Does your uterus hurt? (ok, so maybe I’ve never actually heard anyone ask another woman this, I just assume this is something they say)

But although I am different, I’ve never felt not supported, loved or cared for. If anything, I have felt more of those things than most people. So, I never really thought I needed to meet other woman with MRKH for support. BOY WAS I WRONG!

Last month, I had the opportunity to go to Michigan to an MRKH conference, and I still haven’t quite figured out the right words to describe my time there.  Was it awkward? 100% YES!  The word vagina was said 57 times in 1 hour!  I knew one person. That was it.  So, I had a few glasses of beer to get to know some people better, and that helped. The conference was super informative! The University of Michigan’s research team did an outstanding job of presenting the most recent MRKH information (and obvious shout out to the Beautiful You team). This was great. But I think the thing that was most impactful to me, was meeting other woman who ar

e like me. They were all ages! I could see myself in each and every one of them. They lived normal lives. They had inappropriate humor. They liked to drink. They were skinny, chubby, tall, short… Normal looking woman from the outside, but on the inside they are the only ones who truly understand the daily struggle of someone who has MRKH. This was not something I knew I needed. Why do I care so much if someone understands me? I actually don’t know the answer to that. So, I guess, if I had to come up with a way to describe my experience to Michigan for the MRKH conference, it would simply be – Life Changing.

Side note:  This condition may seem rare… But it is not THAT rare.  It effect 1-4,500 women. And if I am doing my math correctly, that means there are maybe 8 woman in my medium sized town of about 77,000 people who have MRKH. When a woman is first diagnosed with MRKH, it is scary. Doctors don’t know what it is, parents don’t know, and certainly friends and family don’t know.  The more we talk about it, the more normal it can become, and the less alone these woman will feel. Talk about it.

Erin

Life is a funny thing. Its crazy to think about one decision effecting your whole life, especially when that decision never really seemed like that big of a deal. One decision that I think about all the time is the day I said “yes” to working at Disney World. Besides the obvious experience of working at the “happiest place on earth” and moving across the Country by myself, I had the experience of working with 3,000 other college students from around the world. But in addition to that, I made some great friends. One of them has been on my mind a lot lately. Erin.

I first met Erin when we became roommates at Disney world. I definitely won the roommate lottery (to be fair, so did she). Erin and I became instant friends. We met in line at check in and found out we were roommates! Her sense of humor and personality instantly drew me close to her. We had two other roommates, but I could barely tell you their names right now.  We made each other laugh and kept each other sane during a really crazy yet fun time in our lives. We did EVERYTHING together.

We were having such a great time that Erin convinced me that we should stay just a little longer and continue to make $6 an hour. I don’t think either of us were ready to go back to real life, so, we extended our stay at Disney for a few more months.

Erin taught me about Faygo Red pop, Euchre, the Red Wings, girls who drink beer (specifically green beer) are cool, and how to show people where you are from using the Michigan mitt on your hand. She shared her love of St. Patrick’s day with me and her passion for all Michigan sports (even though when we went to a mariners game, she wore and cheered for the mariners). She made fun of me for saying I’m from “Washington State” because I was the only person she had ever met who had to say “state” at the end of where they are from. Then we made fun of people together who still thought it was Washington DC. We took a road trip from Michigan to Florida, that was my first and last time staying at a Red Roof Inn. It was a memorable trip and we had a lot of laughs a long the way.

We used to see who could get more tan...she would always say she was so tan, and by “tan” she meant she had a lot more freckles than normal.

She was there for me the first time I got my heart broken.

I could, and did tell her everything.

We over used the word basically

We argued with people and each other about if it’s called pop or soda, top Raman or Raman noodles.

She also thought it was unreasonable that our other roommate would cut her toenails on our kitchen table.

When we got home from Disney, my life seemed empty without her in it everyday. She came out to Seattle and spent the summer with me.

But I knew Erin was going to have a special place in my heart forever when I was going through a period of my life where I was embarrassed and ashamed of myself. I hadn’t really opened up to many people about having MRKH, and one night, I told her. I cannot remember exactly how I told her, or what she said, but what I do remember is her not acting weird around me.  She always treated me like a normal person. She asked questions, she made fun of me (in an appropriate way), we laughed about it, she let me cry, she hugged me and told me she thought I was a strong person. I felt like she really understood me, and knew what I was going through. She thought it was the worst thing anyone could go through (she was definitely wrong on that one).   My point is, that Erin came in to my life when I needed someone like her the most, and as years went by, we stayed in touch, but grew apart as time went on. Its hard keeping relationships across the Country when you are both leading separate lives, and she was raising 3 kids. Erin never treated me different, as people often times do. She could always make me laugh when I wanted to cry.  I will NEVER forget our relationship, and the important and special role that she had in my life.

When I spoke to her a few weeks before she passed away, she ended our conversation with “everything is relative my friend”.