Since starting my memoir this past January, the number one thing that I have realized is that no one knows exactly how I felt growing up and living with Cerebral Palsy – except me.
As a writer, that can often be a hard way to start off since I don’t have other sources to gather much information from. I just have my own memories and feelings of how my CP has impacted my life.
Even though I may have friends and family who want to understand, no one can say they know exactly what I faced.
Growing up, not having anyone who understood was hard. I attended a private school in my hometown from 1st grade until 10th grade, and even though the kids that I went to school with were some of the same kids that could be found on my street on the weekends playing in front yards and riding their bikes up and down the sidewalk, they didn’t really know me. They wondered about me, that I could tell. The way they stared but never said anything told me how they felt. Growing up, I hated the staring, and I still do. However, when I was at school and didn’t have much of anything to “hide behind,” there was no way to escape the staring. The kids I went to private school with hardly ever asked what was wrong with me. Either their parents had told them, or they just weren’t sure. As I was growing up, I quickly learned that I was the one that was going to have to initiate friendships. People weren’t going to walk up to me begging to hang out with me or sit with me at lunch, and that was something I had to deal with early on.
Therefore, I initiated things. I had to let other kids know that I was comfortable with myself so that they could be comfortable with me. When the other kids asked what was wrong with me, I’d say, “I have Cerebral Palsy. I was born with it.” That seemed to satisfy most of the kids. Though I knew they still didn’t fully understand, they were curious. All kids are curious. Therefore, I just had to find a way to answer their question without having to go into so much detail (since I didn’t fully understand things when I was that young either). Heck, I didn’t understand why I was different from all the other kids my age, so how could I explain that to the kids I went to school with. I couldn’t. It’s that simple.
These days, I’ve been hesitant to explain to friends about my CP just because I’ve realized that for most of them, it doesn’t matter. They are my friends, and they could care less about what’s wrong with me because to them it’s not a big deal. To them, it doesn’t define me. Even though it took me a long time to be able to vocally say that my Cerebral Palsy doesn’t define who I am, I have reached a point where I can talk about my CP with my friends (which I think is because I have started writing my memoir and am no longer afraid to be my true self). No, my CP doesn’t define me. However, it still affects me on a day-to-day basis. That’s not something that can be denied. Therefore, when I’ve told my friends about my CP, it hasn’t been hard for me. It’s been easier to talk about, and after I’ve opened up about it, I’ve gotten so much support from my friends about my strength and courage. And in my mind, getting that kind of response is worth facing the fear of talking about the disability that, though it may not define me, has impacted me on a physical and emotional level that most people can’t even fathom.
For me, every single day is a struggle, which is not something that most people know. Most people don’t realize that I still feel a large amount of physical pain, especially in my back, which often causes me to stop, place my hand on my lower back, and breathe through the pain. Even on the days when the pain gets bad though, I choose to be a fighter. I choose to be a fighter because honestly, what other choice do I have?
Giving up has never been an option for me, and so rather than simply allowing myself to wallow in self-pity, I’ve learned to thrive.
About the author: Amelia Coonrod is a college student from North Carolina majoring in Psychology and is now writing the memoir of her life living with Cerebral Palsy, which has acted as a jumping off point for her to have the opportunity to share her personal story with the world, with the goal of being an inspiration to kids and families of kids with disabilities. She spends her days surrounded by the beauty of the Blue Ridge Mountains of North Carolina.
Even though there are many people she would like to thank, she primarily wants to thank her parents for their constant love and support, as well as Grace, the inspiration that helped Amelia realize that she wanted to begin opening up about her struggles regarding Cerebral Palsy.
She can be reached at acoonrod (at) unca.edu or you can can visit her website at lifeintheblueridges.wordpress.com
Kate - An Everyday Story says
I was so happy when you stumbled across my little blog. We are still learning about CP and what it means for our son and our family. While we try with our utmost to have him feel confident and resilient you did mention something that I hadn’t considered; you needed to be the initiator. I think I need to think about this a little more and process it. My son will need to be the initiator. Thank you for making me think. I find you and your story so inspiring.
Scott "Q" Marcus says
I’m glad we could inspire you and your son Kate. I’m sure Amelia would love to hear your comments. I have passed them along, but get in touch with her too – and check out her site.