Below Ky shares her story of MRKH- a rare disease affecting only 1 in 5000 women- and how she found her way back to her body through dance by @kyliemc
I was active growing up. I was a figure skater, I played soccer, and then later in my teens I got into dance. Movement was always a huge part of my life. I went to a performing arts high school and then went on to pursue my passion of performing, acting, and musical theatre in college. Life derailed for me in about my third year of college, when I was 20 years old. At 20 years old, I still didn’t have a period. My family doctor at the time didn’t find this odd - my mom had started her period late and I had been under weight for quite of bit of high school, so she didn’t didn’t seem to find it unusual that I didn’t have my period. My mom pushed for tests to be done to figure out what was going on. After a series of appointments, ultrasounds, and MRIs, I was referred to a gynaecologist who ultimately made the diagnosis. I have MRKH, or Mayer-Rokitansky-Kuster-Hauser Syndrome.
MRKH affects 1 in 5000 women and it essentially means I was born without a fully formed vagina (only a small 1-2 inch opening where a vagina should be), no cervix, no uterus and wouldn't ever carry or potentially have my own children. Standing in front of my walls as I share this information publicly is something I always hoped to have the courage to do, but I still cannot express the mad vulnerability I feel as I type this. To be completely honest, I didn’t know if I would ever share my story with more than a few people. The irony is, MRKH was nicknamed “The Silent Disease” for exactly that reason. Because of the embarrassment, the fear, the disgust, the sadness, and all of the complicated emotions wrapped up in this diagnosis, women and girls don’t speak up about it. As a result, no one really knows it exists. Even many medical professionals I encountered over the years had never heard of it. With MRKH, you have two options when it comes to creating a vagina. You can opt for surgery, which is not performed in Canada, and about 6 months of recovery afterward. The other option is to stretch the “dimple” that already exists with a dilation process that can take anywhere from three to eighteen months, requiring 20-30 minutes of physical therapy daily.
This is where I spiralled out. All I wanted was to suck it up, do my daily dilation, form my own vagina and get on with my life, but I couldn’t do it. Every time I went to do my 30 mins of physical therapy, I couldn’t bring myself to do it, because it was mental torture every single time. I would break down in tears because this process would remind me that I wasn’t like everyone else and I felt like a freak that would never be intimate with anyone. It was a vicious circle of wanting to be “normal” but not being able to bring myself to push past my demons and actually get it done. There was no light at the end of the tunnel for me at this point.
Sharing this part of my story shines a light on one of the most vulnerable times in my life. It’s funny, even my best friend, one of the only people that knew about my diagnosis besides my family, didn't know MRKH had anything to do with not having a vagina/cervix. I only told them I didn’t have a uterus, didn’t have a period, and couldn’t have children because it seemed less embarrassing than explaining the full truth. That’s so crazy! I couldn’t even share the full truth with people I felt comfortable enough to confide in in the first place!
Sex is one of the most intimate and personal aspects of someone’s life and to be told that I had severe physical barriers around that in my young twenties just isolated me completely. I didn’t want to get close enough to be intimate with anyone because I was so grossly embarrassed that I wasn’t like everyone else. If I did let myself get close to someone, I was so mentally removed because I was just too concerned and horrified that they might realize that “something was off” or “I wasn’t normal”. I was ashamed and confused and I disconnected with my body because I didn’t want this diagnosis to be true. In turn, I tried to control so many other aspects of my life, because in my view I’d had the most personal and intimate part of me ripped away in one diagnosis.
In the few years after my diagnosis, I didn’t even realize how intensely disconnected I had become. My body was being dragged along for some ride and I put myself through hell and back because of my choices in those years. I was so removed because I was avoiding my own truth…and let me tell you, you can’t hide from you. It is always with you and trying to run from something inside you will never work. It will only put you through torment. You HAVE to look into yourself and face every bit of you that you might be hiding from. You can’t be your authentic self until you have the courage to dig deep. And oh man, it took a lot of courage and a lot of time for me to slowly start healing.
Breaking down physical and mental barriers, getting on with my appointments and physical therapy - that took work. Once I began to climb that mental mountain of accepting my MRKH and learning to love what made me me was really when I could feel that mind/body/spirit connection sparking up again. It was at this point in my journey that I really felt a special connection to movement come into the picture. My healing through movement started with fitness and then with dance. With fitness, I could feel how my body was working with me. I felt strong - both physically and mentally. As far as really connecting with movement and gaining the confidence I have today, I owe that to joining AOS Toronto! Army of Sass is a heels dance training group for all different levels. When I started going to these classes and reconnecting with dance, I felt like myself again. I was letting my body express only through movement, trusting to not judge myself, and most of all learning to own my confidence as a woman.
And holy shit! That felt incredible! It felt like being able to truly love myself. Movement brought me back into my body, which brought my body, mind and soul together in a way I had never imagined possible. I experienced genuine self-love that I didn’t know I could achieve. When I turned inward and finally said to my body and to myself “I will love you as you are and everything you’ve been through. I’ll treat you with the respect you deserve. I’ll fight for you and with you - not against you,” is when everything changed for me. That’s when I was able to release what I had been fighting for so long. Reconnecting with movement and my body absolutely saved my life. It opened the door to self-love, and healing, and a life that I am proud to live everyday. I fought to be the person I am and, holy hell, I am so proud of the person that I’ve become!
For me now, movement plays such a huge role in my life and it is so therapeutic. Movement offers a place of healing - letting me feel and process emotions that my body understands on a deeper level than I ever will. I’ve always felt emotions so deeply in me that there were never words I could string together to do those emotions justice (any fellow Scorpios out there feel me on that?!). Being in my body gives me an outlet to express, process, and move through things that mentally analyzing them never will. Sometimes, the only thing that makes sense to me is to dance is out, to move… and that’s what this video was. The song “In My Blood” by Shawn Mendes came on while I was starting to do dishes. The music immediately spoke to the emotions I had been feeling within myself, and it just felt right to let them live. I put the music on and just let myself improv to it. Is it perfect? No, but who cares? It doesn’t need to be, and knowing that and believing that is freedom in and of itself.
Did I hit my ceiling light on in the middle of my improv? Of course I did ha! But that’s what improv is all about and hey, like life it’s all about loving the expected and the unexpected and learning how to make it work for you. It is easy to feel isolated or alone…know that you are never alone. No matter how scary it is to step up and be vulnerable, use that courage and step into your light. Your story is your magic - it’s your power - it’s what makes you you. If one person out there reads my story and finally feels like someone else understands or someone else shares their experience or just for one minute doesn’t feel alone… that’s all I can ever ask for.
If you do want to know more about MRKH, these are some great sites and articles: