The Day I Changed

6 June 2019

It took me until spring 2014 to talk about it comfortably. It took a line game to be exact. Who would have thought crossing an imaginary line could have so much power over me. The proctor repeated “physical and/or mental disabilities”. My heart raced and body shook as I cross over and said “I have Holt Oram Syndrome. It’s a syndrome that cause abnormalities in hands, wrist and/or legs. Instead of having a thumb, I have four fingers in each hand with one extending to act like a thumb. With this syndrome it cause my bones to switch in different places , so I don’t have a full rotation on my wrist. I can move my right wrist almost part way, but a quarter of the way on my left. It was uncommon syndrome that doctors won’t very familiar with and lack faith I could do things on my own let alone live. It was an uncommon syndrome that alienated me and made me feel ‘different’. That was something I feared and reasons why I became uncomfortable with the topic until that day, the day I saw myself changed.

Above any challenge I had growing up, the hardest one was accepting myself. For a long time I really hated being different, always having to figure out a different way for everything whereas to others it became easy. Even doing to simple task like playing hand games became a challenge. I still played them regardless, but it was disappointing that even a silly hand game like ‘Miss Mary Mack’ was difficult because I couldn’t hit the back of my partners hand the ‘normal’ way with my wrist. I hated feeling uncomfortable in a place always wondering if people notice my hands or know. Or embarrassed when I had to hold hands with someone, and they look at my hands realizing I couldn’t rotated it further. I started despising the way I stand wishing my hands can hang straight like everyone else, not awkwardly bending. I already knew I was different, but I didn’t want everyone else to treat or see me as different. I never brought up my hands to people because I didn’t want them to changed their opinion of me to a freak. Everyone said being different is cool and unique, but it was hard for me to see that when having no thumbs sets me apart from others.

But what I didn’t realize is as much as I kept on hating myself, I will always be the same girl diagnosed with Holt Oram, nothing was going to change that. I was focus on things that were so difficult not even realizing the things that weren’t like making friends, writing, being in a school where I feel like I belong. But still, I was always nervous of what people thought of me and not what I thought of myself. Maybe it is apparent fear with going to a new place, meeting new people and having them accepting me for me. But like all challenges it must be overcome. I have a condition that I can’t change and accepting that was a challenge on its own, but I just have to go through life doing things the only way I know how. My way and that was finally okay with me.

As much as my heart was beating crossing that line was a pivotal moment of accepting myself. To realize that I couldn’t keep hiding or be ashamed of whom I am. I have to remember how far I’ve come in life. I was told I wouldn’t be able to write, do simple task like hold a book, and eat without help, sports, instruments, basically everything. But what I wasn’t told was I was going to fight through and overcome it. They didn’t tell me this was going to be a challenge I’m going to persevere. I did.

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