A Journey With Cerebral Palsy

Having cerebral palsy has been described as looking through a window at the world. Living with some degree of separation inside every situation encountered. The portion of separation from a typically developed world can vary. Sometimes, feeling far removed from the situation transpiring in the window. Other times, feeling close to experience the things other people are experiencing. But, never quite feeling totally involved like our friends and family. It could be the feeling, of looking through that window, which provides one of our most challenging situations. Bringing about an ach inside often hard to describe. When everything looks easier for other people to execute. Not simply the physical daily tasks most of us engage with. The emotional aspects of interaction seem simpler for most to understand. Another way having the disability can carry emotions of isolation. Leading to the idea of cerebral palsy impact not stopping at the physical impact. There seems to be a real emotional toll accompanying the disability. The relief comes when feeling as though we are close to sharing experiences. My solitude becomes found in some of those places. Where the distance between myself, family, and friends can be closed. For me, a large part of those moments has been found in sports. The shared moments of watching a game, talking about the golf swing, or imagining possibilities of things to come. Even while looking through the window, I search for moments to be shared.

Sports has always been the closest I have felt to shared experiences. Something most of us participate in while with others. We sit down and watch a sporting event together. With my degree of cerebral palsy, it has been an activity that works. There are aspects of each game which have become relatable. Having played all kinds of sports in the neighborhood. Still, success in any kind of athletic field has always been elusive. Having only played organized sports on the recreational level. Taking on endeavors like T-ball and playing a couple years of recreational basketball. However, never having played for any team where becoming selected was involved. That was the point at which the window became inserted. Watching people play sports competitively when my coordination level fell short. As life moves onward, many people find themselves exiting the competitive realm of sport. They carry the knowledge gained from playing and become interested spectators. A place where I have the ability to close the gap between. The information many gain from playing the sport, has come to me from watching and being around the sports. Our knowledge tends to meet in the middle. With an ability to learn from our differing perspectives. While, sharing the commonality to better understand the sports we enjoy.

The opportunity to watch sports as a spectator remains just one way of sharing experiences. Going to a game or watching the event on television. Even though we might look upon the game differently. We tend to watch for similar events to happen inside the contest. Each sport carries their own set of high value situations. Going beyond the numbers placed on the scoreboard to signal who leads at a particular point. As someone watches games over the years they pick up things to watch. Whether the turnover battle in football, the number of rebounds in basketball, or the pitch count in baseball. Athletics leaves us much to converse about and debate. The only thing required would be an interest in the given sport. One can be involved in an intriguing conversation having never played competitively. Someone has the ability to gain enough knowledge to even help coach a sport. Athletics have truly been one thing pulling down the window that often leaves me feeling on the outside. It seems these are the reasons golf appeals to me at such a high level. The sport set up for anyone to play. Judging by the variety of teeing points on each golf hole. Each hole can be lengthened or shortened depending on the individual ability of the player. Causing everyone to feel included in the experience.

There are many aspects of golf that bring people together. Making me feel in many moments as though the window has been diminished. Aspects of playing the game lend themselves to shared experiences. The truth that we don’t all hit the ball three hundred yards remains an unescapable fact. For me, knocking the golf ball two hundred yards required a pretty good swing. Downhill, with the wind, on a good day, maybe two-twenty could be caught. I’ll let you know when it happens…. But, the thing about golf making me feel close to those I play with are the shared shots. The shots on the golf course, which most good players would tell you are the most important. Those would be the short shots required around the green. We all experience the knee-knocking chip from just off the green, or the tricky bunker shot from a hollow of sand below the putting surface. Then, we all scratch our head on the putting surface. Walking back and forth to find the correct line for the putt to fall exactly into the indentation. The nerves coming to the body when trying to drain an important putt. And those putts we want to make all might carry different meanings. One person might get anxious trying to make a birdie. While, their playing partner could experience similar emotions over a putt for par. The game provides an opportunity for us to share in similar emotional experiences. At the same time, on the same piece of land. Pulling down the window that often leaves me feeling outside the human experience. 

There aren’t many places in the world where similar things get experienced. Cerebral palsy provides a view not typical for most people in the world. Often causing the feeling of looking in from the outside. Most people engage in activities every day that aren’t relatable to my life. I might be able to perform a task similarly. But, often it will require more challenge. Placing me into the position of struggle. Leading to more energy being used up to get something completed. The ease with which people get things done might take very little energy. Giving them room to focus on other things with a fuller focus. These facts can lead to emotions of frustrating if allowed to fester. Looking through a window toward people who get things accomplished. Without the worry of whether or not they can complete the task, without paying much attention to the energy required for the process. I sit watching with envy many times. Through my window onto the typically developed world. As someone carries a tray of food or a full drink across the floor. I think about how they probably aren’t giving the activity a second thought, when my mind can hardly contemplate the activity. The process would require special circumstances for me to complete. The drink would require ice and possibly a lid for me to carry without incident. The plate would need strong borders, containing food not prone to sliding. Even then, the plate and drink couldn’t be transported in the same trip. When watching this occurrence time and again. I wonder how it could be done with such ease. 

That ease seemingly felt by typically developed humans, leaves time for other things. To process a brain relieved of physical concerns. By contrast, thoughts about the impact of cerebral palsy often enter my brain. Concerning myself with fatigue ranks among my largest thoughts about my disability. Especially while growing up around friends. It often seemed as though they hardly tired. Able to stay up late into the evening, while I was often the first to head off to sleep. Looking into the window on their ability to procrastinate studies. Staying up until all hours of the night. The latest I was ever able to stay awake with my nose in the book was just past two in the morning. Having only seen the sun rise on a couple social occasions. The fact that people can stay awake for long periods of time has always been astounding. It makes much sense to expect more rest to be required from the impact of my disability. At times, amounting to nine or ten hours to feel completely rested. But, living with more fatigue takes its toll emotionally. Making me different from the social norm and leading to missing out at times. As the window can feel raised. Forcing me to watch or listen from the resting position in bed. 

Cerebral palsy to the degree with which it resides in me, often feels like a mixed bag. The window onto the world hasn’t always been present. At times, leaving me feeling the gap between myself and typically developed friends remains small. When we talk about sports or sit around watching an event. When playing a round of golf, sometime with people who are beatable. Those areas where common ground does exist. Where shared experiences are relatable between myself and the typically developed friends. The window between us for me to look through, can feel as though it has disappeared. There seems to be more time spent in the opposite position. The idea of looking through the glass separating me from typical life becomes ever present. People moving about their day, carrying out tasks that will never be executed with my ability level. Peering through the glass window feels isolating at times. Wishing to know what it feels like to move around the world with more ease. However, even with cerebral palsy, I have so much to be thankful for in life. The ability to perform many physical tasks remains. With times when the window that gets peered through doesn’t really exist. It really is a gray area and a mixed bag.