Getting to Know My Cerebral Palsy

For years I never really considered the impact of my disability and some of the lesser- known symptoms of cerebral palsy. There is just some information people tend to take at face value, and for me CP fell under this category — or it used to. It’s something I live with, so surely I knew all there was to know, right? And CP already took up a lot of my time, so why would I want to invest more time in this thing?

I guess I just didn’t want to be consumed by the label “cerebral palsy” and the power it could possess. I thought by acknowledging the entirety of the existence of CP, it would overshadow the other parts of my character. But by doing this I was robbing myself of getting to know things that were there but hidden from my knowledge. Humans are strange beings; we’ll talk endlessly about “first world problems” such as not knowing what outfit to wear on a Saturday night or if there is Wi-Fi, but when it comes to more serious issues, things that concern the heart, the ability to speak or put the right words together can become an unmanageable task. We become strangers to ourselves, denying our feelings, overlooking our difficulties and refusing to accept help.

It can take time for people to identify and share their struggles, and take it one step further and educate themselves about difficult topics. For me this is/was CP. But when I started sharing my experience with CP, finding blogging to be my way of “cracking the code,” I found my hard, heavy, immovable shell was softening and becoming lighter. Some things were easier to write about then others, like describing losing my balance as my very own portrayal of dramatic ballet. Other things such as how my tremors can cause me frustration have been harder to express. Showing a vulnerable side is scary, especially to strangers, but I was able to connect and share stories with others who had the same disability. There is some good to come from the age of social media, after all! From this, I was also able to learn more about CP and find out some things I’d experienced and thought were unrelated are actually associated with my condition.

I am a jumpy person and can flinch at any sudden noise, however small — even a person’s voice after a short period of silence. This is very annoying, and I have no ability to stop this reaction. I used to think this was a habit I learned way back when and therefore it could be unlearned – easy, right? Wrong. I learned that my jumping Jill self was actually a part of CP!  Babies have a Moro reflex, also known as the startle reflex. This means that when babies hear a loud or sudden noise, they will jump. After a few months this reflex normally goes away, but can remain in those who have CP.

When I first read this, I thought “finally, I have an explanation for my reaction.” Though there is no quick fix, or any fix for that matter, what I could do was accept my startle reflex as part of me. Not only has CP allowed me to become a spontaneous dramatic ballerina (sponsored by my staggered walk) and allowed me to practice down to perfection the saying “dance like no one’s watching” (courtesy of my tremors), I now can say CP makes me a professional jumping Jill!

Part of me still struggles, especially when I’m in new company and someone says “Sorry, did I make you jump?” I never know quite what to say — talking about reflexes isn’t a great ice breaker on a first meeting. But at least I know why. I can feel less ashamed and not be afraid to use the cliché, “It’s not you, it’s me,” but changing it up to say, “It’s not you, it’s my CP.”

It’s important to recognize and accept our struggles, but realize it is not the end point; it is just the start. Learning more doesn’t have to weigh us down; it can help make sense of our world. I hope people who read this will rethink being silent about their disability or the obstacles they face. Get to know it, don’t be afraid of it and don’t be a stranger to yourself!