DailyBlog: What Would I Like To Change?

*** The first three books in my six-part dystopian series have officially made their way out into the world! Check them out!
For the sake of blogging, self-exploration, and contemplation, I’ve been slowly making my way through answering questions from this list

Today’s Question: What would you like to change?

I’d like to change people’s preconceived notions about physical appearance. This is a particular phenomenon that I’ve never understood in my life, and yet I’ve experienced it not only throughout my childhood, but also throughout my adult life, as well.

I’m going to be more open than I’m really comfortable with in order to thoroughly answer this question, but I’m challenging myself to not “hide” things about myself that I’d compulsively hidden / felt ashamed of / etc in the past and I’m trying very hard to accept certain aspects of myself and move forward differently.

I was born with a rare genetic disorder, or “syndrome” that 1 in 50,000 people have; NPS, or “Nail-Patella Syndrome.” This syndrome has a myriad of weird aspects. Ironically, despite me being painfully aware of the symptoms of this syndrome throughout my life, I was unaware that I had this specific syndrome until recently and I’ve been trying to process it mentally and emotionally for the last few months.

1. My knees. So, my kneecaps are abnormal, or really just small and more flat than they should be. This means that it doesn’t take nearly as much force to injure and dislocate my knees as it does for a “normal” person. I first snapped my ACL when I was ten. I slipped at the pool on vacation and suddenly pain is SEARING up my leg. Then I did the same to my other knee twice as a teenager in horseback riding accidents. That knee was so badly injured that there are now pins and screws holding it together. I’ve torn other ligaments in my knees just stepping wrong, etc. I need to be cautious and careful. I still ride my horse, but I’m careful, I do dressage now rather than cross country or anything extreme. I don’t do other sports because it’s too risky and as a ‘single mother’ who works full time I really can’t afford to have a knee injury that lays me up for months at a time.

2. I hate talking about this but I’m going to push myself to do so anyway. I am blind in my left eye, have been since birth. I don’t even think about it often because I don’t know anything different. The specific condition that caused it is called PHPV, or “persistent hyperplastic primary vitreous” Generally when eye problems are related to NPS it’s glaucoma, but I’d be hard-pressed to believe that it’s just a coincidence that I have NPS -AND- PHPV and they are unrelated. The physical “tell” of this is that my blind eye, my left eye, is physically smaller than my right eye. Sometimes I wear ‘fake’ glasses just to make it less noticable, but its not like I can do anything to hide or conceal that. I do still feel embarrassed by it.

Having been born blind in one eye, I’ve never known different so it never occurs to me that I see differently than others, and yet I’m VERY auditorily inclined; I’ll remember ver batim conversations from years ago, but if you asked me what you were wearing yesterday, chances are I have no idea and couldn’t tell you. I think I just subconsciously don’t rely on my vision in the same way that others normally do, but it doesn’t stop me from living a somewhat normal life. I’m not legally blind or anything and although I -CAN- legally drive, I choose not to because it gives me too much anxiety, actually stemming from an accident I was in when I was a kid rather than my visual limitations though I’m sure that plays a part on a subconscious level.

3. My fingernails (and toenails) are very small, and they really don’t grow. I have always been super embarrassed by this and until recently had no explanation for it. I naturally “hide” my nails, I never pain them or do anything to draw any attention to them because they look weird, and I notice that when I’m having conversations with people, I usually hide my hands or curl my fingers inward. I don’t do this on purpose really, I think it’s just a habit I developed as a kid when other kids would ask me why my nails looked so weird and I felt embarrassed / humiliated.

When you have physical differences, things that make you look slightly different than others, there is this weird phenomenon in which some people tend to treat you like you’re stupid. How and why people equate physical differences to intelligence isn’t something I really understand. After all, look at Stephen Hawking, pretty much the smartest man alive, and look at his physical limitations! But nevertheless, people have done this to me my whole life. I am definitely not a genius on the level of Stephen Hawking, but I do have an above-average IQ and I am most certainly not unintelligent in any way. The frustration and – yes I’m using this word again – humiliation that I have felt when others talk to me as if I’m mentally handicapped is something I find difficult to truly describe.

If I could change something, I would change the way people get uncomfortable and oddly reactive to someone who doesn’t look “perfect”, who has a few small differences about them, and the correlation that they have, either consciously or subconsciously, that physical differences somehow are connected with intelligence. I would change the weird stigma about people with differences, and the awkwardness that others seem to feel when interacting with people who are a bit different. I would make differences ACCEPTABLE and NORMAL.

(Not everyone treats me oddly, I do have some wonderful people in my life, but being condescended to based on my physical differences IS something I’ve experienced periodically from early childhood up to present day, and the frustration and humiliation that it causes never wanes.)

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