Ok, so my family and friends always tell me that they wouldn’t know that anything was wrong with me if I just walked by. They say they don’t notice that my scapula stick out. They say I can wear shirts that don’t cover my shoulder blades because “who cares” or “who will notice.” But come on, everyone notices and I care. We all like to pretend that we don’t care what people think of us, but it’s almost impossible not to care, even if you just care a little. I may not care about certain things, but if people stare at me and wonder in their heads that girl walks weird, then I start to care, A LOT. Even I sometimes think in my head that someone walks weird, or looks weird, etc. But ever since my FSHD has gotten bad, and other people noticed it, I tried to stop thinking those things in my head. I don’t want to judge other people if I don’t want to be judged. I’ve learned that everyone has a story, so if you see something odd, don’t judge; they could have just lost their mother to cancer and started dressing weird, because they don’t have the time to think about dressing up or looking good. Everyone has a story, so it’s best to keep to yourself and not point out everyone’s flaws.
We all wish that everyone understands this concept, but that is just not the case. A few months ago, I became a part of the Big Brothers Big Sisters of Rhode Island (I go to Bryant University, so it’s close to me). I am now a “big sister” for a young boy at the elementary school across town. Once a week I drive to the elementary school to play with my little brother and help with homework or help him study. My little brother (not allowed to say his name) is so fun and great to hang out with and I feel like he understands most of the things that go on in life. I would say the opposite about a little girl I met on the first day at the elementary school. I walk into the school to meet my new little brother for the first time, but while waiting up front to meet up, a little girl walks up to me. Right away she says “why do you walk like this?” and then she imitates the way I walk (arched back, walking like a pregnant woman). I tell her that I have an arched back and she says “oh” and walks away. My next week back, I walk in and the same exact girl says to me “you still walk like that?!” (sounding really surprised) and I just say calmly, yes with no explanation. I was annoyed at this point that this little girl was being so blunt and up front, almost like she was making fun of me.
I realized from this situation that my friends and family were wrong. If a little 7 year old noticed that I walked weird, then there’s no doubt in my mind that everyone else noticed. The difference between a 7 year old and a 20 year old though, is that the 20 year old won’t point out your flaws like that so blatantly like a young girl will. I’ve noticed throughout my life that young kids are always the ones staring at you and saying blunt things to you, mostly because they don’t know better. I thought that we were all taught at a young age that staring is rude, so why do people still stare! Whatever, enough of my rant. All I ask is that you don’t make fun of someone for the way they look or the way they walk; everyone has a story (and it’s not always a good one).