I have spastic diplegic cerebral palsy. It is very mild, meaning that I can walk without assistance except on uneven surfaces (curbs, stairs, etc.) and I can perform most fine motor skills but need extra time to do so as with cutting and tying my shoes. My left leg is more affected than my right, and I have the most spasticity in my hamstrings, adductors, and my calf muscles.
Oftentimes, I feel like I belong in two different worlds—the disability community, and the world of those who have no mobility struggles. I can’t completely relate to either world, which has presented some difficulties.
In school, I am in advanced classes, which throws the teachers for a loop. Because I have cerebral palsy, they expect different things from me automatically, which isn’t fair and shouldn’t be true, but that’s the way it is. Everyone else in my classes needs no help moving around, and do not take extra time to get to class. I stick out by default, which I’m used to, but it isn’t always easy.
I found out I had cerebral palsy in the third grade, when I was eight. I was diagnosed with CP when I was 14 months old. Before my parents told me that I had cerebral palsy, I was convinced that everyone else had the same difficulties moving around, but that I was just worse at adjusting to the difficulty level. When I was much younger, I had to do occupational therapy, where I would meet other kids, some of whom relied on wheelchairs. Because I have never needed a wheelchair, and my cerebral palsy is much less visible, I never thought I had a disability. I just thought something was “wrong” with me, and everyone else had the same challenge walking—but that others were better at hiding it.
Though it was difficult for me when I was told that I had CP, I was also relieved. The label meant that there was a reason why I struggled, and I was grateful to finally know why I was different. It has been confusing at times, and hard to tell other people about my diagnosis when necessary, but most of all, having the “label” of cerebral palsy means that I am not alone.
When my parents had the conversation with me about my diagnosis, they were confused why I was crying. The information was overwhelming and hard to take in, like is that really my body you’re talking about?! but the main feeling I experienced was relief.
“Why are you crying?” my dad had asked me. “It’s not like anything changed. You’re the same as you were before you knew you had CP.”
He was right to some extent—I had had cerebral palsy my entire life. I was the same person. But in my mind, so many things had changed. I wasn’t just “messed up” or “defective” or any of the awful words I’d thought about myself. No, I had a community now. There were others like me, other people who had very mild CP, other girls who were going through the same challenges that I was.
My parents read me Amelia Hall’s outstanding article “If I Could Talk To My Younger Self Growing Up With Cerebral Palsy” and it brought me so much comfort. There were other kids who had cerebral palsy and who had gotten bullied, other kids who hated recess just like I did, other kids who were self-conscious and who wanted nothing but acceptance, friendship, and to be “normal”.
Several years later, I joined The Mighty and was so happy to find that there were indeed others like me. I’ve found my place in the world—the space where it’s okay to not know everything about who you are, the space where you have things in common with others but you’re not the same. Because I don’t know everything about who I am. And no, unlike my teacher once assumed, I don’t know everything about cerebral palsy just because I have it. No case of CP is the same. I found out I had CP later in my childhood, and I’m still learning new things about it now.
He was right to some extent—I had had cerebral palsy my entire life. I was the same person. But in my mind, so many things had changed. I wasn’t just “messed up” or “defective” or any of the awful words I’d thought about myself. No, I had a community now. There were others like me, other people who had very mild CP, other girls who were going through the same challenges that I was.
My parents read me Amelia Hall’s outstanding article “If I Could Talk To My Younger Self Growing Up With Cerebral Palsy” and it brought me so much comfort. There were other kids who had cerebral palsy and who had gotten bullied, other kids who hated recess just like I did, other kids who were self-conscious and who wanted nothing but acceptance, friendship, and to be “normal”.
Several years later, I joined The Mighty and was so happy to find that there were indeed others like me. I’ve found my place in the world—the space where it’s okay to not know everything about who you are, the space where you have things in common with others but you’re not the same. Because I don’t know everything about who I am. And no, unlike my teacher once assumed, I don’t know everything about cerebral palsy just because I have it. No case of CP is the same. I found out I had CP later in my childhood, and I’m still learning new things about it now.
Having the diagnosis of CP does not necessarily change anything about me—but it does change how I feel about myself. I’m not the only one going through some challenges. I’m not the only one who has mild cerebral palsy anymore.
I am no longer alone in what I’m facing.