I wanted to write this because I was inspired by a post on Facebook by my friend Cory Jacobson. The post was about how she chose not to find out if her husband, Ian, was a carrier of SMA, when she was pregnant with her daughter, Kinley. If he was, Kinley would have had a 50% chance of having SMA. Cory and Ian didn’t care, because they loved Kinley no matter what. In her post, Cory mentions how her many people talk about eradicating SMA through treatments, but she, for the most part, loves her life, SMA and all.
This made me think about my own situation. What would I be like if I never had SMA? Truthfully, even during the hard times, when I’m sick or I face an accessibility obstacle, there are so many aspects of my life that are positive because I have SMA. Here is a list of all of the things that make me Dominick. These things are shaped by my experience as a person with Spinal Muscular Atrophy.
I truly believe I would not be as empathetic. I generally care about other people, because I know what it’s like to have so many people bully you, beat you down, and make you feel bad about yourself. I never want anyone to feel the way I felt, growing up, teased for my disability in a non-accessible world. My empathy is directly related to my experience, and to the belief I have that I should treat others the way I wish to be treated myself. SMA has made me more empathetic, caring, and concerned about the plight of my fellow human beings.
Strong Willed and Determined
I would not be as strong willed. I am probably the most hardheaded person you will ever meet. I never take no for an answer. I have had to prove myself and my worth throughout my entire life. I am determined to live my life to the absolute fullest. I won’t give up. Having SMA, and being told I’d never accomplish anything because of that really inspired me to show the world just how capable I truly am. I will never give up trying, because this is the kind of person I am.
Dealing with accessibility issues has made many of us with SMA quite creative. A lot of us know how to troubleshoot through crazy barriers of accessibility. I have had to think outside the box my whole life. I owe that innovative spirit to SMA. I do not think I would be nearly as creative in problematic situations if I didn’t constantly have to think on my feet. Lord knows, being able to navigate broken elevators on the NYC subway qualifies for innovative sainthood, and I have been there, done that!
It would be really easy to get lost in my own concerns, and my own life. I am extremely lucky that I have access to clean, hot and cold water, a roof over my head, food on my table, clothes in my closet, and so many other things people do not have, in various locations around the world. I had the chance to be educated. I have my own vehicle. I am a very lucky person and I always count my blessings, because I truly am grateful for them. I also try to help others struggling, because I am so lucky to have what I have. If I can lend a hand to a neighbor in need, I will do all I can, to help them out.
I fight for human and civil rights because I care about people. I believe I would be much more self-centered, if I never lived with SMA. Instead, I devote my life to advocacy and making a difference for all human beings in this big, beautiful world.
Involved in Film or Other Creative Endeavors
My grandfather was excellent at sports. I have sports stars on both sides of my family. I absolutely love sports. I tried to play whatever I could, as a kid. I would play power sports, if we had them in my area. I definitely believe I owe my involvement in the creative arts to having SMA. I couldn’t go out to recess in the winter, so I stayed inside and sang songs. Instead of playing sports, I filled my life with voice lessons and acting classes, which eventually evolved into my love of film. I believe I would have pursued sports with more fervor, if I had not been born with SMA. As such, I would’ve had no choice, but to limit my time in the creative arts, so I could have pursued sports. I own my creative talents to SMA, because it gave them a chance to flourish.
I am a better person because of my Spinal Muscular Atrophy. It has made me the person I am today. I would not be me without SMA, and I think the person I am, is pretty terrific! I wouldn’t change me for the world. So, thank you SMA, for giving me all these wonderful traits. Without you, I would be an entirely different person; probably not anyone who is particularly nice, friendly, caring, compassionate, hard-working, innovative, creative, or worth your time.