Things I Wish You Knew:

Living with Cerebral Palsy is a challenge every single day. There are some things I wish people knew. One of the things I don’t think people understand most is that I’m just trying my best. I know that it sometimes takes me a long time to do certain things, but I’m working at my most manageable pace. If you have spent time with me, you notice whenever you ask me to hurry, I don’t. When I try to go faster than my usual walking speed, my spasticity kicks in and ends up slowing me down.

When it comes to physical activity, I use much more energy than my nondisabled peers. According to the American Academy for Cerebral Palsy and Developmental Medicine, due to the way CP affects the way people move, people who have cerebral palsy may have to use 3 to 5 times more energy to perform the same amount of work as their peers in terms of effort, persistence, muscle control, and concentration. Even at rest, people with CP have to work hard.

Needless to say, I have found this to be true in my own experience. Walking around the grocery store or mall feels like I’m participating in a road race. After I finish up a physical therapy session, it feels like I’ve run a marathon. I am using muscles during PT that I don’t use otherwise. I know it might seem like I am constantly fatigued all time. However, please don’t think that I am lazy. I’m always trying my hardest to keep up with a body that doesn’t want to cooperate.

Cerebral Palsy is much more than a disability that just affects my limbs. I struggle with mathematics because of brain damage that resulted in CP. I always received lower grades in math than in the humanities. However, for me to receive a passing grade in math, I had to work really hard. I took the easier math courses because calculus, trigonometry, or similar courses would be too complicated for me. My difficulties with math also meant that I struggled with courses like chemistry. When I took these classes, I usually ended up with a B or a C average in the class. I knew I wouldn’t be an engineer or chemist in the future.

I also tend to get lost really easily because I have trouble orienting myself in large open spaces. When reading a book, I sometimes have trouble keeping track of where I am on a page. In addition to my physical and learning challenges, life with Cerebral Palsy requires meticulous attention to detail and planning. If I’m going somewhere where I’ve never been, I call ahead to make sure it is accessible. I have to make sure I have enough medications, I have to schedule physical therapy sessions weeks in advance, and I have to make sure a family member or PCA can take me to school or the supermarket when I need to go. I can’t just run out to get milk or eggs at the last minute.

I wish everyone understood just how complex life with a disability can be at times. Next time you see me in public, realize that even if it looks like I’m going slow, I’m just doing the best that I can. If you believe that a disabled person should be “doing something,” I want to remind you that we are doing the best we can with what we’ve been dealt with and, most importantly, to be considerate. After all, we are only human.

Sources:

“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/.

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