Cerebral Palsy has taught me that you have to try to live life one day at a time. CP can vary significantly from day to day. Some days I experience more chronic pain than others. During puberty, chronic pain became a part of my daily life. Spasticity also increased when I began puberty. Most days, spasticity makes movement hard. On a good day, I can accomplish everything I want to do that day.
My friends and family know to be flexible with me. Last week, I told a friend that I was too tired to have him over in the evening. He was okay with this and didn’t take it personally. I felt terrible because I had told him twice that I didn’t want to have him over last week. Yesterday, he came over, and we went for a nice walk around the neighborhood.
Fatigue has also become a part of my daily life as I’ve grown up. I can no longer walk around for hours. All-day trips to the mall aren’t possible for me in my walker anymore. Running errands often leaves me exhausted. An hour in the grocery store feels like running a marathon.
According to the American Academy for Cerebral Palsy and Developmental Medicine, people with cerebral palsy may use 3 to 5 times more energy to complete the same amount of work as their peers in terms of effort, persistence, muscle control, and focus due to the way CP affects the way people move.
I’m no longer able to crawl on my hands and knees. In addition, except for outpatient therapy, I rarely spend time on the floor these days. Being on the floor causes me significant discomfort. When I was a kid, movement was much easier for me. I could keep up with my peers on the playground and gym class.
Because of changes in my level of function and fatigue, I decided I needed a power wheelchair when I was a teenager. After the chair arrived, I was upset for a long time. I saw needing it as a sign of failure. It seemed like I was giving up my ability to walk. I didn’t realize how useful a wheelchair would be at the time. I’ve become more independent thanks to my power wheelchair.
Cerebral Palsy has taught me to live one day at a time. I can’t stay out until midnight with my friends as many 22-year-olds can. I don’t go to the movies late at night anymore. If I don’t accomplish everything I wanted to on a given day, it’s okay. I am only human.
“Cerebral Palsy AND Post-Impairment Syndrome.” Edited by Gina Jansheski, Cerebral Palsy Guidance, Cerebral Palsy Guidance, 19 Sept. 2020, http://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/.