The idea of being different has forever been part of my life. Different has been a word used to make sense of the world around. Seemingly without much negative connotation. Void of caring whether being different means something bad or something good. The word applied to my cerebral palsy has carried both meanings. From my view of the world through the lens of CP, being different has been both good and bad at times. The challenging thought to ponder has been what it feels like to be different. There have been all kinds of feelings involved with having differences from others. Surrounded by a world created for someone else can work on an unexpected continuum. Each day presenting new challenges, bringing about emotions from frustration to excitement. The world provides me with challenges even while doing the same things each day. Those challenges with everyday tasks have caused feelings of isolation and loneliness. They don’t happen all the time and it would be a stretch to call them daily emotions. But, they do seem to center around the feeling of being different. The positive side of the coin should not be overlooked either. Those differences provide us room to grow. They instill challenges not faced by many. When the challenges become met, we are making positive impacts.
Thinking about the time during life when those first feelings of difference arose. Each time the thoughts come about, it remains difficult to point to an instance. One of the first coming to mind was around learning to ride a bicycle. The process of learning was taking me longer. Requiring the training wheels to remain on my bike for an added duration. Longer than the kids around me required the assistance of those small wheels. The strong emotion attached to feeling different during those times was that of isolation. Feelings of being stuck in this stage of learning that might never end. There really was no certainty of having the ability to ride on two wheels. When those feelings of uncertainty take over around a skill seemingly easy for others, the world can turn into a nervous place. Maybe at some point, questions started swirling around what to do if riding on two wheels wasn’t possible. The training wheels could probably stay on indefinitely. However, at some point the inability would be holding me back with neighborhood kids. The only option of overcoming those feeling of isolation and uncertainty was to continue working. Taking the negative emotional energy and placing it into something positive. The skill of riding must have continued improving because I kept trying. The more time spent on the bike with training wheels, the better my balance was most likely becoming. In the end, channeling those negative emotions worked and the training wheels came off my bike. But, the initial success wouldn’t end the feelings of hurt.
The kids in our neighborhood would continue to progress in their riding ability. The same friends,’ I was riding around with got better and better on their bicycle. There were times where keeping up was getting beyond my skill level. The cerebral palsy continued to hold back my ability to progress. However, even with the disability slowing my progression, I continued to become a better rider with practice. Riding bikes almost every day around the neighborhood only improved my ability to balance. Even with improvement happening, there was frustration and sadness over the pace. Until the moment arrived of watching others gain the ability to speed away on their bikes. Or gain momentum while we were riding together, causing the gap between us to grow. It felt like a natural situation to have taken place. They began exceling at the activity and competing with one another over speed. Something challenging for me to participate in, as the disability found me slowly improving my balance skills. The gap caused by their ability to balance better caused a mixture of emotions to deal with. There was often a place we all intended to be going. Leaving me with the knowledge that I would arrive eventually. No matter how far out in front of me the group might have gotten. The sadness in those moments never seemed to subside. Eventually, hints of jealousy would become part of the emotions being felt. The balance and coordination to move at speeds close to the others just didn’t exist. Even though I diligently continued working to improve. Often being the last person to arrive somewhere would start taking a toll seemingly elevating the feelings of seclusion. As the thoughts of being inadequate slowly seeped into thoughts about myself. Being frustrated by them, I tried keeping my attention on slowly improving. Even if meeting typical skill level on a bike wasn’t possible.
These situations while riding around the neighborhood with friends made little sense. At the time, the value of speeding off and leaving people behind was confusing. It left me with sadness. The whole idea of riding together would seem to mean sticking together. But, even at young ages there was probably some competition going on. Attempting to find out who could ride their bike faster. Wondering who could get from one house to the next with more quickness. The age-old evolution of boys being boys was playing out as we grew. Everyone wanting to be included in the friendly competition. For me, it was the first look into how these physically competitive environments were going to feel. It was then becoming clear that my place in these arrangements could become lost. The competition felt singular, every person for themselves. There wasn’t any team of people around to prop each other up during struggle. The way competition was pictured in my mind. We weren’t spending much time helping each other out. Waiting for the person who might be pulling up the rear. It seemed to begin shaping the way I hoped to look at the world. If struggling meant being left behind, feeling lonely and isolated. I wanted to be there for people who might have been slower and feeling exiled from the group. The whole situation playing out in front of me, each person competing against another in this every person for themselves situation. It was bringing on a big picture of sadness.
The feelings of sadness became important to be recognized. Even though it was challenging to understand at the young age. The emotions seemed to continue changing as we grew. New adventures and skills continued infiltrating our lives. Thinking about the first time of watching someone ride their bike without holding the handlebars. It was an act seeming far outside of my ability range. Watching someone coast down any hill without holding onto the bike was impressive. I recall being in awe of the maneuver each time it was witnessed. But, watching this take place didn’t seem to bring about feelings of jealousy. Nor did watching someone ride this way have the sadness impact or emotion of being excluded. Riding with people who were going along without holding the handlebars didn’t leave me in the dust. Many times, they would be rolling down the hill at a slower pace. Taking their time to maintain the balance without the added stability of holding the bars. Usually when they rode downhill while holding on they could continue pedaling. Having the balance to fly down the hill. Which would have the impact of leaving me behind. Worried of moving too quickly and losing my balance on the bike. So, when someone raised their hands off the handlebars some relief came to pass. Realizing we would be riding down the hill at about the same speed. I would be coasting as well, attempting to keep us at around the same speed. As the feeling of being left behind had become all too familiar at that point.
Those emotions connected with being left behind amongst a group of friends. Similar emotions seem to accompany being different. The first descriptions that comes to mind are feelings of sadness or loneliness. Like not being welcome to sit around the table during lunch. The exclusion can take quite the toll. Situations of being different and experiencing exclusion due to those differences can leave us feeling lost. There have been times of confusion over being excluded. Asking the rhetorical question of why the world actually works in the ways it seems to. Competition getting in the way of connection and compassion. The questions all seem to lead down the path of confusion. When keeping up with my group of friends was waning, how was it going to be possible to be accepted? Spiraling into defensiveness over this disability that was beyond my control. While beginning to feel patterns of being included out of some form of obligation. Maybe that emotion goes slightly too far. Guilt seems to be a real thing even when talking about young people. And though it might have led to being included at times, people don’t seem to enjoy gaining attention out of feelings of guilt or obligation. In the face of these instances being felt, putting on a brave face seemed the best idea. The exploration of understanding whether we are truly being included, or kept around out of the sense of obligation. The challenge of working with the emotions of being different seem far from easy.
It all seems to get tied up into this idea of competition. Maybe forms of competitiveness bordering on reaching too far. The notion of competing has always appealed to me. From being a young kid, watching and playing sports was great. It appealed to me on many levels. A group of teammates working together at something while attempting to better another team. The individual seems less likely to be left behind in this scenario, as you’re only as good as the weakest partner. So, we are taught the value of working together and helping one another. Growing up with others riding bikes during the spring and summer was something different. If you were unable to keep pace, you were likely left behind. But, it didn’t happen all the time, as there were kids around who wanted to stick together. They chose not to dissolve playing as friends into a competitive environment equipped with feelings of isolation. Even so, the competitive nature wasn’t always negative. Those feelings of sadness and isolation led to working harder. Being left in the dust drove me to keep practicing. To find out how much better my balance on the bike could become. Learning what to do with the negative emotions being felt. Like most people, I wanted to be included. So, I set my mind to becoming a stronger rider. Even if ultimately the disability would hamper fully reaching the goal.
The bicycle taught me things were going to be more challenging during my life. Skills wouldn’t be learned as quickly and easily as others. In some cases, the ability to perform a physical task may completely elude me. Those unavoidable facts of living with a disability didn’t hold me back from making attempts. Many times, if the first attempt wasn’t fruitful, continuing to try took precedent. Instead of placing my head in the sand, blaming cerebral palsy, and giving up on a skill. Giving up on improving my disability would have gotten me nowhere and been counterproductive. Some of the happenings around playing in the neighborhood weren’t fun to have experienced. Causing some hurtful emotions to be attributed to the difference being faced in my life. No one wants to feel sad, lonely, or isolated because of things far beyond their control. However, those emotions seem to be part of being different in our culture. It boils down to deciding how to handle those emotional disappointments. My choice was doing my best to channel the feelings. Using them to propel me into working harder at riding the bicycle. The concept has continued in my life, because those negative feeling haven’t stopped be part of my life. They may not happen as frequently and always turning something negative into something positive doesn’t always work. But, it does seem a good goal to strive for, no matter the challenges we face.
A Journey With Cerebral Palsy 