I Grew Up

So, here’s the thing, March is Cerebral Palsy Awareness Month. I have never been comfortable talking about my C.P. I feel like it’s obvious that I have it. Thanks to my powered wheelchair, Ruby, she comes with me everywhere. If you know me, you know Ruby.

When it comes to my advocacy work, my writing, I’m comfortable talking about my mental health journey. Or LGBTQ+ rights when it comes to my bisexuality. (I think I like the term queer better. It’s more inclusive.) But I’m not comfortable talking about my C.P.

I think I’ve spent my life trying to overcome my C.P; instead of embracing it as part of my life, and part of who I am.

It is part of who I am. And it’s time that I do in fact embrace it. I’m a unique case. At least that’s what I’ve been told my entire life. It’s not common for people who have C.P to the degree that I do to also have the cognitive ability that I do. I don’t mean this in a boasting manner, just mere fact of the life I’ve lived so far. It’s my truth.

At times it’s been lonely. I don’t exactly fit in with the disabled community. No, not quite true it’s more that I don’t have a disabled community around me. Don’t get me wrong, my able-bodied friends and family are great. I wouldn’t be who I am without them. In my life there is no line between family or friends. If you’re a friend, you will be treated as family. But they can only understand and empathize to an extent.

It doesn’t help that most research and resources found online revolves around C.P in childhood. Which yes, we receive the diagnoses of Cerebral Palsy during early childhood. I was diagnosed around eighteen months, I think. The intervention of multiple therapies was important. In my case physical, occupational, and speech therapy sessions shaped my early years.

But guess what?

I grew up.

And my Cerebral Palsy didn’t magically poof away.

If anything, my C.P impacts my life more now that I’ve reached adulthood. My muscles ache from tightness. Spasticity is at an all time high throughout my body. My mobility is limited and takes more effort than it should. Stamina for day-to-day life activities? Like showering. Almost non-existent. Granted I no longer have access to physical therapy. That’s exactly my point though. That’s the problem. Cerebral Palsy is lifelong; I still need the therapy I needed as a child. Except for now it’s not here. I’m twenty-seven, I’ll be twenty-eight near the end of the year. And I can’t picture what my future will look like. Mainly because I don’t know what care and support will be available for me. Luckily, I’m many, many, many years away from having to figure this out on my own.

Still, this doesn’t stop my little anxiety emotion from wreaking havoc inside my brain. At least she has Maya Hawke’s voice. If you know, you know.

What I’m trying to say with this ramble of a blog post is that I don’t know enough about C.P. Especially how it works inside my own body. My own brain. I want to learn more, and it’s easiest to start a conversation by sharing.

I’ve started sharing through the books and stories I write. Stories matter to me. Characters matter to me. Representation matters to me.

I have a short story called “The Midnight Kiss.” It’s available on Amazon. In the story I have a character named Kit Hart. Kit is a wheelchair user, because he has Cerebral Palsy. Kit also has an identical twin brother, Huxley, which “The Midnight Kiss” follows. I’m currently writing Kit’s story. It will follow him as he falls in love, and learns to let someone else in. Throughout the story he learns to trust the words people tell him. That he’s not an obligation or burden.

A lesson I’m still learning myself. I will probably be learning it in one way or another for the rest of my life. Some days are good. Some days are not good. That’s life. My C.P doesn’t define my life. It’s simply a part of my life.