It’s no surprise that when we’re in pain, we like to have something, or someone, to blame. Perhaps fate has chosen a pitiful destiny laid out just for you, or a mistake that was made in the past has found a way to torment you in the present. As a person with a disability, I have encountered these thoughts on multiple occasions all in hopes of seeking answers regarding my own destiny, sometimes questioning one all together. But, as I’ve come to learn, destiny is not really what the universe has in store for you. Destiny is what you make of what is given to you.
When my mother had me, she was completely unaware of the journey she was about to face. I was a healthy child, I had all the little toes and fingers that she would count and sing songs about and I would laugh, just like any other child would. However as most children would eventually start squirming around and crawl to their mothers during playtime, I had trouble even lifting my head. After six months of searching across Ukraine, I was finally diagnosed with Spinal Muscular Atrophy. With limited resources in our hometown of Chernivtsi, Ukraine, we moved to Los Angeles to seek medical care. At 22 years old, my mom had to leave her life behind in order to save mine. In that moment, she realized that although this wasn’t the path she was anticipating, it was her destiny.
Growing up, it was strange to have to adapt to circumstances that weren’t under my own control. I knew the science behind my condition— a flaw in one of my genes meant my body did not produce enough of a protein that is vital for motor neurons to send signals to the muscles in my body. Over time my body progressively got weaker, but I always struggled to find a reason behind why I was “chosen” to be disabled. It took me many years to acknowledge it, but I recognized that this instinct we have to put blame on others leads to what is best described as a cycle of dread, where we build up resentment and never learn to fully accept and love ourselves because we are caught in a hamster wheel continuously thinking “what if my life was just a little different?” These thoughts held me back from excelling in life and showcasing my strengths because I spent all of my energy comparing myself to others. I knew that the only way to escape this cycle was to finally give up on society’s definition of perfection and create my own definition by standing out in a sea of identical people.