A Disabled Life

Living with cerebral palsy meant that I became used to medical care early in life. I received PT both in school and in outpatient settings when I was growing up. I had numerous medical appointments as well. Communicating with medical professionals became second nature to me. Eventually, I became more comfortable talking to adults than my peers.

My disability also meant that most of my relationships were with adults. I was fortunate to have a loving family while I was growing up. To this day, my family is one of the most important blessings in my life.

I didn’t realize just how much this impacted me until my younger sibling began to attend birthday parties, dances, sporting events, and sleepovers. I realized that my sibling could go somewhere without wondering how they would get around someone’s house or use the restroom.

I was often jealous of my younger sibling. I longed to be able to go to a friend’s house for an afternoon or go to the movies with a friend. I wanted to go to the roller skating rink or to an amusement park.

I knew I had very little control over who helped me with activities of daily living, even as a child. I would have felt uncomfortable asking a friend’s parents for help using the restroom. In addition, accessibility meant that my friends had to come to my house if we wanted to see each other.

Throughout my school years, I had a paraprofessional. In elementary school, it wasn’t a significant barrier. In middle school, my peers became more reluctant to interact with me because I had an adult nearby. By the time I started high school, I had lost interest in developing friendships with my peers.

Over the years members of my care team have shown me how much they care about me. I first met my longtime paraprofessional in 2004. Nearly 20 years later, we talk on the phone weekly.

As a child, I knew she cared about me. I was comforted by her presence while at school. During the summer she would often take me to the library, out to eat or to the playground. On rainy days, we would do art projects or watch movies together.

My best friend was an instructor at the martial arts school where I took lessons. Over the years, we grew closer. He is now my roommate and full-time PCA. He knows little things about me, like my favorite juice flavors and my favorite foods.

I have wonderful relationships with my medical team as well. I’ve worked with my current PT for three years now. I look forward to working with him because we enjoy talking about sports, our family lives, and the TV shows we are watching. I appreciate when someone who is a member of my care team gets to know me beyond what they see in my medical records.

It is comforting to know that people understand that I am more than a diagnosis. Yes, I have cerebral palsy but you are working with me, not just my diagnosis.

I worked with the same PTs for most of my childhood. I have seen the same physiatrist for over a decade as well. My primary care physician is located at the same medical office I’ve been going to since I was an infant.

I’ve met many excellent teachers, doctors, PCAs, and therapists. The devotion they’ve all shown me over the years hasn’t gone unnoticed. I am forever grateful to everyone that I’ve worked with. Every person with CP is different. However, we are all worthy of dignity and respect.

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