Throughout my entire life I have never thought of myself as different from everyone else. I mean, I know that I am physically disabled and confined to a wheelchair, but as far as who I am and what defines me, I have always seen myself as “normal.” I view having Spinal Muscular Atrophy as no different than someone having eczema, psoriasis, or asthma. It is just a part of my life, but it is not who I am. This perspective of equality that has played such a large role in my success in life and shaping who I am is something that my parents worked tirelessly to instill in me. They did this by never treating me as their “disabled child,” but as their “child.” They would always find a way to make sure whatever we were doing as a family, that I would be able to participate in one way or another. I was reminded of this as I reminisced with my sister over the Easter weekend about our Easters as kids.
I remember the excitement of waking up on Easter morning knowing that the Easter Bunny had come during the night and hidden a basket filled with candy and toys just for me. That feeling of anticipation would well up in your belly as you thought about the hunt that awaited you. In the Drotar house however, it was not as simple as merely hunting high and low for your basket of sugary goodness. In addition to hiding your basket, this sadistic, holiday hare from hell would hide 8 to 10 plastic eggs of a certain color containing clues. Each clue would lead you to your next egg somewhere on our property, which would
contain another clue, until eventually you get the final clue that leads you to your basket. These clues were not simple either. Oh, no. For example, one clue that has stuck in my memory because of the great use of alliteration is, “Your next parcel lies on the pachyderm’s proboscis.” In the pre-internet days for a child of 8 or 9, this was not exactly easy to figure out. It meant pulling out the dictionary, trying to decipher what “pachyderm” and “proboscis” mean, and then figuring out where to go for that clue (just FYI, the egg was on the trunk of an elephant statue of my mom’s). There were years where it would take one of my siblings or I several hours to get through all of our clues, which would suck since you would have to watch your siblings pigging-out on candy from their baskets while you kept searching for yours. Despite the added difficulty and frustration that these clues brought however, there was an added sense of accomplishment upon reaching the end and finding your prize.
Looking back now, I see the genius behind these little plastic eggs. When you are stuck in a wheelchair and cannot use your arms much, you cannot exactly go around opening cabinets, moving furniture, and crawling under beds looking for an Easter basket. In order to make sure that I got the same feelings of anticipation and excitement as everyone else on Easter morning, my parents…I mean, the Easter Bunny…turned a purely physical activity into an endeavor that was as much mental as physical. I could sit and try to think through my clues just like my brother and sister, and then send someone to look in the locations I thought were right. This incredible act of ingenuity and kindness helped to build in me the sense of equality with others that has been so valuable to me over the years. They took a situation that could have been very difficult for me and pointed out how different I am from everyone else, and they turned it into an activity that instead played on my strengths and put my siblings and I on equal ground.
This is just one of countless examples of times when my parents made sure to put me in situations where I wouldn’t be at a huge disadvantage, or left out entirely, because of my physical limitations. By placing me in settings where I was just like everyone else through my formative years, and focusing on my similarities with the world instead of my differences, they developed in me the self-image that I am “normal.” They never treated me different or special, so I never saw myself that way. This perspective of equality that they cultivated in me, and I then went on to further develop as I grew up, has played a huge part in forming me into the person I am today. It is what causes me to hold myself to the same standards as everyone else, even though I may have to overcome more obstacles than most people to get there. It is what gives me the desire and courage to dream big, and the knowledge that if I work hard enough and never give up that I can achieve my dreams. It is why I have never, not for a single decision on a single day, let my disability define me or dictate my life.
Everyone has something about them that makes them feel different from “normal” people or like they don’t belong. It is normal to have these feelings, but the important thing is how you go about managing them. If you focus on the few things that make you different, and spend your time trying to change things that are most likely out of your control, then you will never have the time to see that you are not really that different than anyone else. What is the thing that you feel makes you different or inadequate compared to others? Don’t let your self-image be skewed by this one factor that is out of your control. Develop a sense of equality in yourself, that who you are is not determined by this one thing. You are so much more than that. By realizing and accepting this fact, you will feel happier, enjoy life more, and eventually you will almost completely forget about the thing that made you feel so “different” in the first place. You will see that we are all “normal” in our own way.