Very hard to believe that a year has passed and it’s World Cerebral Palsy Day 2020! As always, I like to take this day to reflect. What better way to reflect than through writing a blog post, am I right? So, I thought I’d talk a little about when I myself first learned about my CP.
It was a complete accident. My parents knew, they just didn’t tell me. My physical therapist at the time decided to share that information with me without realizing its impact. Leading up to that, I always used to receive a pink slip after every PT session. On the slip, the therapist would always use a blue or red ink pen to circle what I would then learn to be my diagnosis. Eight-year-old me connected the dots since they circled the same item after every single visit. So, being a curious kid, I went up to my physical therapist and asked her about it. When she confirmed my suspicions I definitely wouldn’t call it traumatic or anything but it absolutely blew my little world apart for a hot minute.
Not necessarily in a negative way. Just that things began to make so much sense, like why I had to go to physical therapy in the first place while all my other friends got to play in the park or whatever. Why I had a surgeon and needed all those surgeries. Why other kids at school sometimes stared and whispered about me whenever I walked anywhere. I may not have known about my formal diagnosis until a certain time but I definitely noticed when kids stared. How could I not? It made me feel so alienated on the inside, even though on the outside I pretended not to see and just kept walking or running or playing in gym class. Put on a brave face, as they say. If you ask me I shouldn’t have had to but I know they were just kids and probably didn’t know any better than to look. We were all just kids, right?
I think I genuinely didn’t realize my walking was unique from those around me until I looked in a mirror. After all, in those days I could walk totally unassisted, without crutches or a walker for short distances. Across the schoolyard, if you will. Down the hallway from class to class. It felt like I had a gait that someone non-disabled would have. Whenever I looked in the mirror it hit me. I was walking but my leg was crooked, turned in significantly. I swayed when I walked as my body compensated. It may be a bit fuzzy now but I had some idea that my circumstances weren’t like those of my friends. Why else would I have known to ask my physical therapist about that little red circle? And who would’ve thought that circle would’ve meant so much?
For the most part I just ran with it. I sensed it was a part of my story and I began to own it. It gave me a sense of control. Couldn’t control whether or not I had surgery or went to physical therapy but I could control this by not letting it dominate me or put me down. Often I like to say I make CP fit like the perfect pair of shoes. That’s still true and probably always will be.
When I ask my mother about her decision to keep the CP from me until I inadvertently discovered it, she explains she didn’t want me to feel different. Or that I couldn’t do what everybody else did. She didn’t want me to feel ostracized. Just want to be clear that never once have I blamed her in any way for not telling me sooner. She didn’t think an eight year old (or younger) should have to process that information and I agree. If it were up to my mother and the chatty physical therapist wasn’t in the picture, I very well could’ve found out later than eight years old. Do I wonder what it all would’ve been like in that circumstance? Finding out when I got older? Honestly, not really. As the old saying goes, everything happens for a reason. I try not to waste time with that particular hypothetical scenario. I found out and that’s that. Did I have a different view of myself afterwards? No. Apparently, according to my mom, I was a pretty damn confident kid. It stayed that way until my tumultuous teenage years, when I started to care a whole lot more.
In a way finding out about the CP was kind of a relief, for me anyway. It gave me an answer. A reason. An explanation of sorts. Knowing what it was made me feel powerful, like I could research and find out all I could about it. It blew my whole world apart, sure, but it blew it wide open too. I don’t like to think of finding out about my CP as an ending. Rather it was a beginning, a jump-start to discovering myself.