Dear Cerebral Palsy
Dear Cerebral Palsy,
Although you have always been a part of me, I have worked hard to make sure that you did not define me or my choices. At the same time, it has been a very difficult process — a roller coaster that I am still riding.
It is funny the memories that stick with you through the formative years and the lessons that you take away from those memories. I remember being part of my second grade field day. My physical therapist and I had put together, and worked on, a net system that would help me participate in the wheelbarrow race. I was so excited to participate in something physical in the same way as the other children my age.
I can still remember the grass underneath me as my arms brought me closer and closer to the finish line. I had finished the race, so proud of what I had accomplished, and how hard I had worked to get there. One of the parent volunteers who was in charge of judging gave me a blue ribbon for my participation. However, the memory that is even clearer to me was when the physical education teacher said in front of me, “I thought we agreed not to give Sarah anything.” No matter how this comment was intended, all of the pride of what I had just accomplished was taken away in that instant. I was angry with you. I had wanted so badly to do something the same as my peers. I learned a lesson that day: people fear what they do not understand.
Going to school as a child, you are supposed to feel safe and protected. For me, it was just the opposite. I hated going to school every day, and I hated the fact that you were there with me; I was not able to remove you like a backpack and take some weight off my shoulders. I remember watching Forrest Gump for the first time. So many scenes in the movie resonated with me back then, and still do to this day. The scene where he is running away from his bullies and his braces just start crumbling to pieces and fall to the ground, and I remember being in awe of that scene and wishing that that could happen for me.
“Don’t ever let anybody tell you they’re better than you, Forrest. If God intended everybody to be the same, he’d have given us all braces on our legs.” ~Forrest Gump
My immediate family is very supportive. As a child, my mother put me into many different activities like ballet, horseback riding, skiing, and art classes, just to name a few. She wanted me to experience everything I could, just like any other child. I have two older brothers, and they never treated me any differently than they would have any other younger sibling. To this day, they are some of my greatest supporters. My father was the same way. Like my mother, I know that they both had worries and concerns as all parents do, but they never let them deter me from trying new things and achieving my goals. This mentality, whether conscious or unconscious, has helped me become the person that I am today.
A lot of my extended family members have not always been able to understand or accept you, so that was very difficult for me growing up. It was something that I thought about often and questioned in different ways during my formative years. Going to school can pose challenges for anyone, but using a wheelchair added an extra layer of difficulty. I faced a considerable amount of bullying from my peers in elementary and middle school. They say people fear what they do not understand. That statement is especially true in adolescence. At the time, it was hard for me to make sense of why it was happening. It is not just my peers who had a difficult time accepting me; it was some of the teachers and staff at school as well. I was even referred to as a fire hazard by the principal and vice-principal of my first high school for wanting to participate in after school activities.
When I was younger, I recall being in Sunday School and telling the Sunday School teacher that I blamed God for having Cerebral Palsy. The church wanted my parents to tell me that my statement was wrong, but my parents felt that with time and age, I would come to my own conclusions. With time, I have realized that you are one of the major influences that have made me the person that I am. You have shown me what it means to continue to persevere, given me the gift of compassion, and made me want a better understanding of what makes people tick. In part, it was these qualities that led me to go to school for social work.
Doing my best to help others has given me a sense of fulfillment that is often difficult to put into words. I have found that when there are certain things in my life that I may not have control over physically, it helps me to know that if, in the long run, I am going to be helping someone else, it makes the times when I feel like I am not in control of certain circumstances worth it. It is with this in mind that I was able to travel to Jackson, Mississippi to do community service work and New Orleans, Louisiana for graduate school.
Going to New Orleans for graduate school was one of the most difficult yet rewarding experiences I have ever had. The graduate program that I was accepted into was aware that I use a wheelchair, but the university as a whole was not aware. The weekend that I moved in was the weekend of Hurricane Gustav, and the city needed to be evacuated. The student disability services office got involved and wanted me to fly home. Knowing that was not an option, I evacuated to Mississippi with a friend that helped me move in.
The disability services office did not want me to stay enrolled at school after we returned to Louisiana, and they tried hard to make sure that was the way that it was going to happen in the months that followed. I was extremely fortunate to have the support of my friends and classmates. They were there to support me in whatever way possible, which included helping me with my basic activity of daily living needs. Not only did this allow me to concentrate more on my education, but I also had the opportunity to participate in more social activities. In the past, I limited the activities that I participated in because I did not want to be a burden to anyone. Rather than it feeling like a burden, it was just a matter of figuring out the logistics. This was just another example to me that there are so many different ways to accomplish a goal.
As I have gotten older, I have felt increasingly more guilty about what my having you has done to my mother and my family. My physical challenges have really taken a toll on my mother physically. She has given up so much of herself to see me succeed. Even when that meant up-rooting her own life on two different occasions to move with me until I received medical insurance and personal care attendant services. I feel as if her physical issues have been intensified because she has had to care for me in so many different capacities for so many years.
As I said in the beginning, you and I have been on quite a roller coaster. While some days are harder than others, I can certainly say that you make me who I am. I have the opportunity to see the world from a different perspective.
“Everyone, regardless of ability or disability, has strengths and weaknesses. Know what yours are.” ~ Brad Cohen, Front of the Class
We all have our own challenges, and you have given me the opportunity to teach others what overcoming challenges look like. I will continue to work toward improving accessibility and inclusion for everyone. Thank you for giving me the tools to be more open-minded, compassionate, having perseverance, and knowledge to continue to learn and grow.