Yesterday was a pretty “big” day for me. I wrote about two topics I usually shy away from. It’s obvious why I would shy away from the one topic, but I do find it a little bit shameful that I shy away from the topic of my health and bone disorder more often than not.
I guess I still have a lot of deep routed aversions to discussing my MHE. I’m not really sure why. I mostly keep my mouth shut about my MHE related issues, because I don’t want to “complain”. I need to stop hiding from the topic though, especially since Nolan has inherited the disorder. I don’t want him to have the same issues and struggles with it emotionally that I have had. I’ve kept those struggles secret too.
Growing up, and even now, I heard a lot of “you’re so strong” comments and I was always afraid of letting those people in on the truth: I’m not strong. Or at least, I’m not any stronger than the next person. I carry on with a smile on my face and trudge through the pain and surgeries because I have to. I don’t really have a choice at all.
I try not to let this disability define who I am, which is why I shy away from it 99% of the time. I still “cover up” my legs when I’m in public. This is an improvement from grade 7, when I also covered up my arms. I wore long sleeved shirts and jeans even in the heat of summer. I still wear jeans if I’m out in public, or long skirts/dresses. I hide my legs because they are the most noticeably different thing about me. Any occasion that I’ve been brave enough to go out in public wearing shorts, someone has stopped me to ask what’s wrong with my legs, or they stare.
And I know, curiosity isn’t a bad thing but I’ve never known how to feel about that question. I’ve never had confidence and ease answering it. Of course, I do tell them I have a rare bone disorder called MHE, and I explain a bit of what it is, but my voice always wavers and I always feel about 3 inches tall as I tell my story.
The pain and the surgeries are the easiest to deal with. I can deal with them silence, but the differences aren’t easy because you can’t hide them. I worry a lot about Nolan’s future, I don’t want him to lack confidence because of his MHE. I don’t want him to feel 3 inches tall when someone notices a bump or scar and asks about it. It’s not a nice feeling at all and if I have one wish it’s that he never experiences it. My hope for him is that he will have the confidence I never did to never hide.
How do I help him with that though, when I myself don’t know how to overcome it? I don’t know how to gain the confidence to remain taller than life when someone notices my differences. I don’t have the confidence to run out in public in shorts and still feel good about myself. Obviously, I wear shorts and skirts that show off my legs more now that I’m an adult and don’t really want to sweat to death, but I never feel confident. I never feel pretty in doing so, because I can feel the eyes on my legs and my toes. Sometimes, I’m met with such ignorance it knocks me completely off my feet and leaves me standing with my jaw on the floor. I’ve never figured out how to recover after someone makes fun of me, or points and laughs at my differences, and I’ve never known how to just “get over it”.
I’m trying to improve and become stronger when it comes to dealing with the noticeable differences this disorder has, but it’s difficult. I don’t know why it even bothers me: this is my body and I can’t change it. I just wish I had confidence to wear cute outfits and rock the shit out of them. I just wish that when I went out in public wearing clothes that “show off” my legs, that I wouldn’t feel so small. But no matter how hard I try to fake it, I still feel 3 inches tall every time I wear shorts in public and I hate that feeling.
So no, I don’t feel strong. I don’t know how to guide Nolan to the place where he feels strong. I will be proud of him, even if he shy’s away from it as I do. There will never be a time in his life that I won’t be proud of him, I know this. I just wish I had the answers for the questions he will undoubtedly ask.
Maybe boys handle this disorder entirely different from girls. Maybe I’m worrying about absolutely nothing. Maybe the emotional affects that this disorder have had on me are completely irrelevant and it won’t be the same for him. I can only hope.