A scared little boy

From the time of my earliest memories, I can remember feeling like I didn’t belong. From my earliest memories, I felt different. Growing up as a second-generation immigrant from India, I already looked different than everyone else. But, that wasn’t all, I was born with a birth defect, Myelomeningocele, or as it’s more commonly known, Spina Bifida. By the time I was 3 years old, I had already gone through at least 7 major surgeries, including 6 brain sugeries.

Fortunately, I do not remember those surgeries or that time in my life. However, fast forward just a few years later, as a five-year-old getting ready to start going to school I remember my parents talking about what they were going to do. It wasn’t just your normal conversation of how I was going to get to and from school every day; it was more a conversation where I would go to school and how would I survive going to school without them. What if something happened to me, would people know what to do? Could I keep up academically? While those seem like questions every parent has about their child as they go into school, but for them, it wasn’t about me. It was about if could I do it because of my disability.

The burning questions my parents had though, were specifically related to my Spina Bifida, How could I take care of all of the medical issues that I had? Sure every 5 year old has accidents at school, but how many of them still wear diapers? How many of them cannot control when they urinate? Could I even go to school if I wasn’t potty trained? How would the teachers react? Would they be willing to help? The answers to many of these questions were not what they wanted. I couldn’t take care of myself, I still wore diapers and couldn’t change them myself. I had to rely on my parents to do that for me. Sure they eventually got these questions answered and found some amazing people at St. Joseph’s Montessori school.

But even though they were able to answer these questions, there were still more basic needs that had to be addressed, how could I get around? Sure, I could walk using crutches and orthopedic leg braces that went all the way from my feet to around my waist but even then, it was only for short distances. The school day was long, how would I get around? I had a wheelchair at the time, it was bright red and had the Hot Wheelz logo on the back. But just like my crutches, I couldn’t push myself around for long periods of time and had to rely on someone else helping me, pushing me, where I needed to go.

It was not until recently that I realized what a profound affect that those overheard conversations had on me. To be clear, I am not blaming them, they had no idea I was even listening or the lasting affect it would have on me. My parents are amazing people who do the best they can for me, even to this day. What I will say, is that this memory started a constant conversation between my parents and in my own head.

“How is he going to do that? He CAN’T do that, he’s in a wheelchair. Who’s going to help him? What about all of his supplies, how is going to take those?”

This conversation continued in my head until I was 30 years old. I used my disability, ironically, as a crutch. I allowed myself to think I was not capable of greatness, that I was less of a person, unworthy of love and compassion from others and most importantly, from myself. I allowed myself to think that if something went wrong in my life, it was because of my disability.

You didn’t get a good grade on your test? It’s because you’re in a wheelchair. That girl won’t talk to you? It’s because you can’t walk.

No, I didn’t get a good grade on my test because I didn’t study. That girl wouldn’t talk to me because I was an asshole to her. The perception that my disability was holding me back allowed me to create an excuse that I could use for almost any scenario. From an early age, I saw the pity that people took upon me and used that to my advantage. I bought into the conversation in my head that I should let people help me to do things I’m well capable of, because, well, why not? If they felt sorry for me, I should too.