I was born into a loving family as a happy, healthy baby, normal.
My mom would describe me as “perfect”. But about 2 weeks after, she noticed my hands were different sizes.
Took me to the doctor and after X-rays they discovered I had a rare disease called Olliers and Maffucci Syndrome. It’s a non-hereditary condition that affects the gone growth and I’ve had over 25 surgeries, which have mostly been corrective. But lots of scars and strange bones.
Growing up, I was always the positive, free spirit, loving kid, which I can attribute to my amazing family. But I was SO insecure about my disease. I never really dealt with a ton of bullying – I grew up in Nebraska, so everyone knew who I was from a young age. But there were people who would stare at the mall or a new kid would ask questions, and it would hit me – I’d almost be shell-shocked. It was almost devastating every time. Oh yeah – you’re different Ashley.
My family has always been told we’re so beautiful. But for me, I felt like they meant from the neck up, because it was the only part of my body not affected by my disease. I can remember playing in the snow once and an Aunt or cousin or something saying… with that snowsuit on, Ash looks normal! Or this other time when I was getting my jeans hemmed and the tailor looks up at me and goes “so what happened” The only answer I can give is “I was born this way” which makes people uncomfortable. He looked up at me and goes, “it’s too bad, you have such a pretty face”.
In 2005, that’s when Social Media entered my life. I was a freshman in college and that’s when that coveted .EDU email address granted me access to this cool new site – FACEBOOK. People were posting pictures, commenting, new friend request it was the cool new thing. But then something happened… I was getting all this attention I never received before, friend requests, messages from cute guys.
And I quickly realized that when I cropped my photos, I looked normal. No one knew I was different. I was Ashley in the snowsuit or Ashley with the pretty face. I sometimes feel like if my life on social media was a documentary it would be called, Ashley: Cropped. I felt like if these people saw the real me, all of – they wouldn’t be interested.
Which sometimes was TRUE, but also completely false. There have been so many amazing beautiful people in my life who see all of me, and love all of me. They see perseverance, strength, beauty from inside and I can fully be myself.
And that’s how I am in-person, I have this “own it” attitude. But social media is a beast of its own. I continued to analyze my photos, being paranoid whenever I would get tagged in new photos – making sure none of my disease was showing too much. I just wanted to look normal. I was still Ashley: Cropped.
So then, about a year or two ago, it was 3am and I was perusing on facebook, or whatever you do on FB at 3am. And I discovered this Facebook group for my disease!
Ollier’s is pretty rare but a little more common, Maffucci’s there are only 200 documented cases in the world. So I’ve never met anyone like me. And they have this map, where people can enter where they’re from. Right now it’s at 119 all over the world. India, Europe, Africa. It blew my mind. I’ve sat in so many doctors appointments where I am educating the doctor about my disease…even one I saw googling! I don’t fault the guy – it’s a rare disease. But I’ve had cancer as a result from this – so it’s serious. And a terrifying moment when even some of your doctors don’t know much. So seeing this group was huge.
So there I am scrolling through the Facebook grop. And I come across these photos a Mom posted of her beautiful little girl, 6 or 7. And I’m looking at it, and then I see it. Her hand, looked exactly like my hand. BONY tumors, MISSHAPPEN fingers, BIGGER than the other hand. The hand…I hate. And I’m in my apartment and I just start crying. Because I imagined this little girl looking through my social media – ASHLEY: CROPPED thinking “Oh, but she’s normal, not like me….she doesn’t know”. But I desperately wanted her to know that I am! I am just like you, and I am HAPPY and thriving and living this hard but amazing adventurous blessed life.
It was almost ironic. Social Media – the thing I was terrified to be judged on, was now the bridge to this unexpected sense of hope and inclusion. It was in that moment, I decided to be at peace with trying to hide myself.
So about 6 months ago, I made a video on Soul Pancake where I talking about my disease, with it exposed. I thought about that little girl, and I thought about me at 6 or 7. I think the problem with feeling so strange, was because I felt alone. No one knew what it was like. I feel like if I had someone who fearlessly faced the world who DID know, like me, I would’ve came to this place of self love much sooner.
So I did it and the response was incredible. My video went viral and people from all over the world reached out to me in support and love – and most of all feeling inspired because they also had insecurities that they wish they didn’t have to hide. Vulnerability is so crucial for human connection and can literally change lives.
Ever since posting the video I have found a new self-love and acceptance with my disease and to embrace and love who I am. I conquered my biggest fear and now I feel like I can do anything. Everything you want is on the other side of fear.
