Author’s Note: Being born with cerebral palsy, it’s nearly impossible to forget I’m in a wheelchair. It brings an entire lifestyle of its own, along with a constant flood of thoughts and feelings. I wrote the following piece in light of all the people the world has lost over the past number of years ― to depression or suicide. It is my hope that this piece serves as a reminder that there is hope and help out there ― and that disability is often much more than meets the eye.
Ever since I was a little girl, I’ve always known I was different. I’ve always had a shadow bigger than my body, but have never been able to stand to look at it ― figuratively and literally. My legs just won’t carry me, and I attribute that to my cerebral palsy. I want to say it’s the reason for all of this, but I’d be wrong. Nor would it be fair.
I’d have to take a good, hard look at myself in the mirror every single day if I began to place blame in something that doesn’t have any thoughts or feelings. I can’t bring myself to point fingers at my disability when it only creates thoughts and feelings, regardless of whether they’re good or bad. However, I don’t deny the fact that cerebral palsy is a thing which exists and admittedly, it drags me down into a hole I don’t want to be in at times. I realize my wheelchair is its own beautifully painful entity, as well. It comes with its own lifestyle and rules. It’s a lifestyle I never chose, but have made my own. I’ve also bent the rules of what it means to be disabled just enough to make up for the things I’m unable to do under my own power. At 32, I think I’ve done a fair job at learning how to live life on my own terms. Still, many aspects of my physical, external world cause turmoil in the world inside me. When all these elements come together, reality hits.
“It hits like a 300-pound wrestler with a wicked right hand, at least for me."”
Having CP ― or any other disability ― is just as much a mental game as it is a physical one. It often doesn’t come as a gentle breeze or a subtle reminder. It hits like a 300-pound wrestler with a wicked right hand, at least for me. The reminders that I need to find alternate ways to do certain things can come in the form of a roaring car engine, the pitter-patter of footsteps as they walk out the door, or even the jingling of car keys. There are days when it takes all I have not to let these noises ― as well as the independence they represent ― get so far under my skin that it steals my inner peace.
That’s the very moment when I go to my computer and start writing, or reach for my headphones to listen to music. I find creativity to be a saving grace, no matter what form it comes in. It’s one of the few aspects of my life that I can fully control. Writing gives me that control, as well as the discipline not to lose my mind every time my circumstances get to be too heavy
It’s difficult to imagine what my life would be like if I didn’t have CP. It’s all I’ve known my entire life, and it would be foolish of me not to acknowledge that fact. I think it would be even more foolish to say that the factors that cause me to have these thoughts are things that go away. I can wish people wouldn’t drive their cars, make noise when they walk out the door, or jingle their keys. At the end of the day, however, that’s not being realistic ― or, again, fair. I grew up in a very busy, bustling household, with people coming and going all day. I quickly grew accustomed to certain sounds in the house because they were my indication of where my parents and brothers were when I heard those sounds. Most times, I’d still be in bed, so I’d count how many seconds or minutes it took to hear a door shut or footsteps coming down the stairs. It made me feel safe in many ways.
Carefully and consciously listening to those sounds over the years has made me self-reliant in some ways. Perhaps more reluctantly, though, it’s forced me to have more patience than I’ve ever wanted to have. That fact alone cuts like a hot knife into my soul, but all this also made me realize the noises I don’t like are necessary in order for my family – and others – to live their lives. That’s not to say it’s become easier for me. I still live at home and still hear many of the same noises I heard growing up. They sink in a little deeper now that I’m an adult. I lay in bed, listening with appreciation and understanding, but it doesn’t change the fact I have CP. Nor does it lighten my load of “baggage.” In fact, it often makes it heavier because I know that no amount of wishing or begging is going to make my disability disappear. I’m still going to have to deal with it ― and all the mental aspects that come with it ― every day and every night until I die.
That’s the one thing I admittedly struggle to make peace with, because it’s the hardest aspect of this whole deal for me to accept. Ironically enough, however, I’ve taught myself to be okay with sitting in my wheelchair ten or more hours a day. It’s very easy for me to say, “I have a disability” or “My life is harder because of it.” I can’t hide either of those observations or sugarcoat them. Nor do I try to, because everyone can see my chair and the delay in some of my movements. Even so, I don’t think many people know or understand the mental heaviness of those statements unless they have a disability themselves, or provide care for someone who does.
It’s not a matter of ignorance or intolerance. It is, however, about making a conscious choice to be aware that not everyone has my set of circumstances and therefore, not everyone needs to think about the things that come with having a disability. That being said, I feel I have a responsibility to raise awareness and educate people about disability.
My career as a writer has given me a platform to do so. I’d be lying if I said writing isn’t what has kept me grounded and sane. It is quite possibly the biggest asset that continues to keep my demons at bay. I’m not sure if I’d be comfortable writing about something so personal if I didn’t have creativity to cushion me. If anything, writing this piece made me think in a different way – and consider how I can help myself.
I can only hope that reading this does the same for whomever is struggling – regardless of whether it’s because of a disability. No one is immune to feeling the weight of struggle, but everyone deserves a chance to break free from its chains. It’s just a matter of how far someone is willing to go to find freedom ― and what it truly represents.