The story of Riya
I remember the full name but they call it the FOP. A rare genetic disease happening to one in 2 million people. Fibrodysplasia ossificans progressiva. Yes, that’s how rare I am. I was born with it. For the initial 5 years, the doctors were confused about what’s happening to me. They ruled out possibilities of FOP but my symptoms weren’t strong enough to confirm. No one knew about the disease enough to detect it.
My muscles became weaker & stiffer with two bones diffusing into one. They call it the living statue’s disease. Since the very beginning, my shoulders were rigid & neck immobile. So, I couldn’t raise both arms or flick my neck with ease. My school life was normal except my leg muscles started to give up & I stood for 6 hours to attend my classes & would lie for another 6 hours at home. It was hard & the only time I said-” Why me? What did I do wrong to deserve this?” From swollen legs, jaw & tongue to other pains that come, I saw my family standing through it all. My family is my biggest cheerleader. They has always showered me with so much support that it was a rare idea to give up. They dismissed fear from my life & asked me to take it by the horns. Because I am not a statue & a mere disease can’t make me into one.
I am lucky to get doctors, friends & family who are all like a big family to me. They make me feel like their life revolves around my existence.
I always do what makes me smile brightest and makes me more strongest. I am obsessed with Korean culture, food, dramas & KPOP so my family took me to their concert in year 2019. I was in the front row & even got single frames with them. It was a dream moment. I was shivering but they were so kind.
My condition is progressive but I can say- I am NOT scared. I have completed my college & now I’m a special educator for Intellectual Disability. So, low hopes are not my thing. Even if it ever happens, I listen to Kpop songs that makes me feel motivated, strongest and happiest.
Ending this with a powerful quote : “I choose not to place DIS in my ABILITY”.