Nemo

Welcome back, lovies! Let’s begin our journey! My family is made up of runners. My parents ran track and cross country in high school and my younger brothers are doing the same right now. They all had great careers. My father’s relay won the state title his senior year in Michigan. My brothers, Daniel and Joshua have run for Team USA in Australia. And Jeremiah just completed his freshman year and made varsity. I had a running career as well, when I was like 4. My running career soon ended after. My mom noticed that I began to walk on my tiptoes around age 7. She was concerned and took me to see a doctor. There they did a few tests and concluded that I had cerebral palsy, specifically, monoplegia. Cerebral palsy (CP) is a congenital disorder of movement, muscle tone or posture which is due to abnormal brain development. Monoplegia is a congenital disorder of movement and muscle tone in an individual limb. For me, the CP affected my right leg (calf) the most. After my diagnosis, I began what would become a new norm for me; therapy. Therapy was not my favorite thing in the world. This was for a few reasons. First, most of my therapy took place in the summer. As kids were enjoying their summer, going on vacation and playing, my mother would drag my brothers along with us to therapy in Novi. Second, the therapist gave me stretches and exercises to do at home. I was mad and didn’t do them because who wants to do homework? Lastly, I didn’t understand why I was there. By this time, the illness and the therapy were all still new to me. Why did I have to go to therapy? Why couldn’t just stay at home and watch Sesame Street or play kickball? It was a lot thrown at me at once. As I stated before, therapy was primarily during the summer and sometimes carried into the school year. As I went through therapy, I started to realize that I was different. My friends and classmates didn’t have to go to therapy. Most noticeably, my brothers didn’t have to go. Why didn’t they have to do stretches and exercises with me? This realization kept growing as time went on. Around age 9, I went through a series of serial casting. This was to weaken and adjust my leg to build it up correctly- through therapy. This time wasn’t too bad for me; my leg itched a lot though. I was on crutches during this time and it was hard to explain to others why I had a cast and crutches. To be honest, I didn’t really know until a couple of years ago. Therefore, I had a hard time explaining the situation because I didn’t break my leg or tear a muscle. I was just in crutches and cast because the doctor said so. In 5th grade my homeroom teacher Mrs. Collins asked my mom about it and my mom told her that it was because of my CP. Mrs. Collins seemed confused and gave me the strangest look ever. I was in crutches for my 5th grade graduation. Mrs. Collins advised me to walk to the gymnatorium ahead of the class. I decided to wait and walk with the class. She also told me not to go on stage but, I decided to because I didn’t want to be different. Anyways, the best part about this time were the casts. Every few weeks, I would have to go and get a new one. I had the doctor change the color every time so I wouldn’t get bored with it. At one point, I had one that was glow in the dark! My mom and I usually decorated my casts. We would draw and stencil designs on them, just for fun.

Once the casting was over, I went back to therapy (obviously) but, I also had to get orthotics (braces) for my leg. The orthotics were knee high. They restricted my mobility. I couldn’t bend my leg much forward and couldn’t bend it backwards. Therefore, it was harder to do certain things such as walking, running, playing outside or sports. I didn’t let that stop me. The community kids and I would play kickball a lot. We played in the area between our condos and used the trees as bases. We also played our versions of football and soccer (soccer was my favorite sport at the time. I even had the Hulk playing soccer for a birthday cake one year).

My favorite activity was climbing trees. Our complex had a lot of pine trees so, we climbed them. It was like a competition to see who could climb up the furthest. At times, I would forget that I had the brace on my leg because I was keeping up with everyone. For those who know me, know that I love swimming. I was a varsity swimmer and water polo player and even helped coach my local Special Olympics swim team. Well before all that I happened, I was at the community pool with my family and wanted to see if I could swim with the orthotic.

So, I jumped in with my orthotic and couldn’t move my leg because I couldn’t flex my ankle. Thus, I just took the brace off and swam without it. During this time, I had to start wearing skateboard shoes like Vans and Hawks because I had to get shoes that were wide enough for my brace to fit but, were too big for my other foot. I wore them for years and I hated it. I wanted to wear Jordan’s and Nikes like everyone else. Now, I refuse to wear any type of skateboard shoes, especially Vans. Around 6th grade, I was in a boot, I don’t remember why. That why it was hard to explain to others why I was in it. By this time, I was 11 or 12, and I had new friends at school. One day, my friend, Skyler asked me the strangest question I’ve ever received about my CP. We were walking to lunch and as we walked to the lunch line, he looked at my leg then looked at me and asked if I had arthritis. First, what is arthritis? Second, isn’t that what old people have? That same year, I wore shorts to school one day. That day, one of the prettiest girls at the school asked my brace. I was so embarrassed by it. I don’t remember what was said but, we didn’t speak after that. I didn’t have to worry about this much longer because my leg had improved to the point that I didn’t need to wear the braces during the day anymore.

I started wearing a night pair. It also helped that I moved to out of state to OH-IO. I moved in the middle of 7th grade. It was not the smoothest transition. I was a black kid from Detroit (well, suburban Detroit) and I was now in Napoleon, Ohio. “White walls, white floors, white people.” I think I heard that from a movie but, it was a very accurate description. One of the benefits of the move was no one knew of my cerebral palsy so; it was essentially invisible to them. I believe around this time, I started to solely wear pants because I didn’t have the brace to cover how small my right leg was, and I was (am) insecure about it. Plus, doing this helped make the CP even less noticeable so, it worked. This worked until high school. In high school, I joined the swim team. I was doing it as a substitute for therapy. I didn’t think much of it because the water covered my legs so, people couldn’t notice the size of my legs. This all changed, when we swam. I had the worst kick on the team. My legs weren’t as strong as everyone else’s so, I was often the last one to complete kick sets and that led to me usually being last in races. I was very insecure about. Around my sophomore year, I named my right leg, my “Nemo” leg. It was because I was a swimmer now and Nemo had an underdevelopment right fin that was like my right calf. It seemed like a perfect fit. It helped me to slowly accept my condition and it felt good. Whenever I had a poor race or was last in the kicking drill, I would just blame it on my nemo leg. Whenever I had a good race or beat another teammate, my friend, Tate and I would disparage them stating that I beat them on one leg or with my Nemo leg. Even though that wasn’t the right thing to do, it was a huge confidence boost for me. Therefore, whenever I swim, I am the happiest. I feel like there isn’t anything I can’t do.

On land, I tried to hide my legs as much as possible. I usually had towels wrapped around my legs whenever I was out the pool for people wouldn’t notice how small they were. But people still noticed, especially when we would do our “dry land” workouts. I wore shorts during those because who works out in sweatpants? Therefore, my legs were exposed. I was very self-conscious about it for good reason, people always pointed it out. One time that stuck with me was after school, maybe before a practice or prom set up, I was wearing my camouflage shorts in the concourse and one of my classmates said something about how small my legs were. I told her to “f%$# off” and explained why they were small and walked away. It just deepened the feeling of otherness. I tried to cover it up as much as possible and when I was confident and decided to let my guard down and be vulnerable for a day, I immediately got attacked for it. Just more otherness for me. Recently, I decided to wear a pair khaki shorts to work. I had bought a new hoodie and thought that it paired with the hoodie would make me look like a stereotypical preppy frat boy so, I went for it. It worked and I felt good about it, until the HR rep came in. I was at my desk doing my work or on Twitter and HR came in and noticed my tube socks. Now, I wore these because they cover up most of my leg, therefore people wouldn’t notice the size of my legs, in theory. HR was like, “Hey man, I’mma need you to roll down them socks.” Then my mom stepped in and said, “Y’all lucky he’s even wearing shorts!” I was hurt but, I didn’t make a fuss about it because I was trying to be confident with myself and he didn’t know why I was wearing those socks. But then, my boss said something about them. She was saying that the socks reminded her about the 60s and 70s and made little jokes about them. She didn’t mean any harm but, why were these people attacking me for these socks? Don’t they know that wearing the shorts was a big showing of self-esteem and self-confidence and was a big deal? Apparently not. As the day progressed, I began to become more uncomfortable being in shorts. I decided to go to the mall in Defiance with my mom, in shorts, to look for some running shoes to lose weight and build my legs. It was at that time that I felt extremely uneasy about the shorts. I wanted to just go home and change into sweatpants, which I did after I got the new shoes. I think that maybe a few hours of wearing shorts would be just fine but, not all day. Maybe, eventually, I will feel confident enough to wear shorter socks along with the shorts.

In my next post I will be discussing my battle with scoliosis and how that and my cerebral palsy intersect.

Before I finish this post, I must talk about my friend, Emily. Emily and I were swim teammates during high school. We swam on the junior varsity team and shared a swim lane. I spent countless hours with her and quietly learned from her. Emily battled cystic fibrosis, which is a lung disorder, all her life. She couldn’t finish all our swim set and drills all the time but, she kept going. Emily missed a lot of school, practices and meets because of her illness and she didn’t let that stop her. She was a very optimistic and determined person. I looked up to Emily because I could relate with her because of the cerebral palsy and my seizures. At times, it all would be too much for me and I just wanted to quit. Whenever I had these thoughts, I would just look over at Emily and see her still persevering, so I persevered as well. After Emily graduated, I would still think of her when I started to have those thoughts. Before every race and meet, I would think of her for inspiration. She inspired me to make varsity. After three years of not making it, I made it my senior year. I credit God and Emily for it. When I found out about her passing, I was deeply hurt, so much that I cried in the middle of a restaurant. What hurt the most was I was going to see her in a week at her fundraiser. We were gonna raise money for her double lung transplant. There, I was going to donate and tell her what she meant to me. Now, I will have to wait until I see her again.
Until next time, angel!

DRG