Most children like to be very active. At least, that was the case when I grew up in the 1980’s and 90’s. A lot of my childhood friends participated in school sports. This would often mean they would stay after school for practice and spend weekends competing against their rival teams. I’d usually go straight home after school and spend weekends in my bedroom.
I grew up watching my favorite baseball team, the Los Angeles Dodgers, on TV. If I couldn’t catch a local game on television, I remember listening to Vin Scully on my portable radio. My family were all Dodgers fans back then. Some of them have switched to the dark side and now root for the Giants. I’m not sure how they could do that but that’s another story. I remember going to games with my parents and Grandma, who continue to bleed blue to this day. Some of the players would stop by the hospital to give me tickets to games. It was a nice treat to be able to bring my family to a game. However, one of the most difficult challenges for me was not being able to play the sport that I loved to watch.
I had weekly appointments with my Rheumatologist at Children’s Hospital of Los Angeles. It was a long drive to downtown L.A. from my home in the San Fernando Valley, so I left school early on Wednesdays and wouldn’t get home until after dark. That meant no playing with friends on that day of the week. For several years, I’d get an injection of Methotrexate during that visit to the doctor. That drug made me very sick, which meant I wasn’t able to do much playing on Thursday either. In addition, the lack of energy and inability to stand too long and/or sit too long makes a lot of social outings really hard.
Despite these challenges, I’d rarely complain about it out loud. I think I bottled up most of my anger and disappointment for many years. Chronic conditions like juvenile arthritis can affect your lifestyle and capabilities in ways that others may not always be able to understand. I remember having a few episodes of breaking down and screaming about life not being fair. For the most part, I’d just look for things that I could do. For example, the kids in my neighborhood all rode bicycles. Since I couldn’t bend my knees, I was not able to. I’ve never ridden a bike. I’m not even sure I would be able to balance myself on one since I never learned how. I wasn’t able to ride a skateboard either. You know what I could do? I could sit my little but down on a skateboard and push myself along with my hands. That created blisters on my knuckles, so I got a pair of leather gloves. This worked well when I lived in the city, but didn’t work out once we moved to the mountains. Since there were no sidewalks and few paved roads, I had to find a new way to get around the neighborhood. That’s when I jacked my older sister’s scooter. I was, once again, mobile and able to keep up with the kids in the neighborhood.
Fortunately, I made some good friends that enjoyed playing with some of the same toys as I did. I had a large lego collection, hundreds of hot wheels and video games. My friends wouldn’t want to play with those things every day, though. They wanted to go play football, climb trees and play tag. Playing tag involved running. i’ve never been able to run. Walking is enough of a challenge. I’d often get my sister to play with me but she was a healthy kid and had her own friends, and they didn’t always understand why her little brother wanted to hang out with them. So, I would spend hours and hours playing alone in my bedroom. I had quite the imagination and was able to keep myself occupied. I spent more time with my hot wheels than I did with any friends, which is why I was probably so devastated when I found out my Mom gave those toys away after I moved away from home. I know it’s silly to say this as an adult, but Toy Story is a difficult movie for me to watch. I don’t think I’ve ever told anyone that.
It took me awhile to figure it out, but I discovered things that I could do AND enjoyed doing. I spent a lot of time swimming, which I still enjoy doing today. I still enjoy playing video games and even had a job as a game tester when I graduated from high school. My mom and dad always told me I probably wouldn’t end up being an athlete or a construction worker but I sure was able to find my way around a personal computer. I don’t think the adults around me really understood how difficult it was for me to find where I fit in. The kids certainly didn’t. Now I realize these challenges made me stronger and have made me the person that I am today.
I know this post may sounds a bit like I’m feeling sorry for myself. That’s not the case at all. I realize that there are people out there that have it much worse and I’m thankful for the life I have. In fact, I believe it could be even more difficult if I had been diagnosed later in life. Many teens that are diagnosed say it changes everything. People do not understand just how much. Friends and family just evaporate. I adapted at a very young age so it’s really all I know.