I define creativity as making the seemingly impossible, possible. People with disabilities go through life with determination and strength, while other wonder if they could accomplish the same thing. Often times I have a goal in mind that may seem impossible but I find a way to make it happen. If there is an obstacle in the way of achieving my goal, I figure out a way to accomplish it all based on a foundation of ingenuity and creativity.
You do not just decide that you cannot do something or it is impossible, it just takes a pinch of ingenuity some creativity and a lot of hard work. A few of my goals I have been able to achieve while having Duchenne is: earn the rank of Eagle Scout, be a member of my high school marching band, playing in team sports. My creativity of doing the seemingly impossible has also inspired others to be creative thinkers supporting me in my daily journey.
Being a Boy Scout has created many creative opportunities for me. During the rainstorms when the camp would become a mud pit, I could not get around very easily in my wheelchair. My troop and I came up with an idea and used 4 x 8 sheets of plywood that we found and moved them around so I could get in and out of camp. I would go from one board to another. Once I drove over a board onto another they would take the board from behind me and put it in front of me. It took several board swaps to get me into our campsite but we did it.
I started playing power soccer in my wheelchair. It is quite fulfilling to be able to participate and compete in a team sport with my peers. I started out with a guard added on the power chair to be able to pass and shoot the soccer ball. It was rewarding to be immersed in a competitive sport. My Boy Scout troop started playing “hocker” – which is playing hockey without sticks but kicking the puck in their socks. I obviously cannot kick a puck but was determined to play. Therefore my dad used his creative thinking and mounted a push broom to my soccer guard, enabling me to play hocker. He also wanted me to start sweeping the house, that’s when I learned that creative solutions can be applied to more than just fun and games.
I think by far the greatest example of creativity is my ability to march and play my instrument in my high school marching band by myself. In 5th grade my dad helped me understand the practical options for choosing an instrument. I wanted the option to continue playing throughout the years as I would become older and weaker. He suggested that I could choose the French horn or the baritone – both are brass instruments that would rest in my lap when I played them. I chose the baritone, and found a smaller version called the euphonium. At the end of 8th grade, I really wanted to continue to play in the high school band. This was a lot different than middle school. The school year starts with marching band during the football season, then concludes the year with concert band performing in the auditorium.
The marching band idea brought up two big problems to get creative with: “how do I play while moving around?” and “how would I move around?” because I could not play my instrument and drive my wheelchair with the same hand simultaneously. My dad built a holder for my instrument that fit on my wheelchair. We had a series of trial and error to get the right design that held the instrument in place. We tried several different methods of holding the instrument up to my mouth that were not practical to use. I remember one of the attempts had PVC pipe that I hit my head on when I drove over uneven terrain. Another idea we had was not strong enough to hold my instrument up, but we kept at it until we found the right design that was easy to remove and install on my chair and I could play. Next, we had to figure out how I could drive on my own using my right hand to play and driving with my left. We used parts from another chair and hooked up the second controller on my left side. I have never driven with my left hand before so I had to learn how to maneuver my wheelchair with my left hand, it was hard but I managed to overcome this obstacle. All this creativity allowed me to be just like any other student and march with my friends on the football field and in parades. Since my freshman year, several other Duchenne families have contacted me about how I figured out how to be a part of the band. They have been able to use some of my creativity methods and join their marching bands as well.
It is hard to believe how many people thought all the things I did was amazing and inspirational, but the truth is that my goal was to be like everyone else and have the chance to experience these new activities. I am ambitious and aim for the stars and use creativity to accomplish anything I set my mind to. My participation in Boy Scouts, marching band, and team sports is a goal any high school student might have; however, what has been more of an accomplishment is the process of creatively finding solutions while living with Duchenne and being able to inspire others to follow in my creative footsteps.
