This post is by Kyle Khachadurian, Community Coordinator at the Cerebral Palsy International Research Foundation and a generally great human being.
Okay. Here we go. 3, 2, 1. Aaaand wake up. Eyes open? Good. Now sit up. God, why am I so tired? I’ve been awake for 30 seconds and I already am feeling the weight of the day on my body. Get out of bed. Find your balance. Dammit, I always stumble out of bed. Now walk to the bathroom. Let the day begin.
That’s how I start every single morning. I have mild Cerebral Palsy, and because of it my mornings suck.
But the rest of my life isn’t so bad.
Cerebral palsy is a condition that affects 1 in 500 people. It’s used as an umbrella term for a variety of disorders that manifest themselves in different ways, usually caused by some kind of brain damage either before, during, or shortly after birth. But if you’re reading this blog, I’m guessing you probably know that.
People with CP all have that one moment. The one where we realize “I’m different.” This happens to each of us at different points in our lives, but it’s the first step on the journey of our acceptance of our disability.
I was one of the lucky ones. My moment was in nursery school when I realized everyone was just like me. I suspect my parents’ intention of putting me in a special nursery school was supposed to make me feel like having a disability was normal, but that didn’t keep me from noticing other people were very obviously not like me even if these people were.
|At age 3|
Growing up, I was placed in a school for people with physical disabilities. I was among the few in the school who could walk, and so I immediately felt out of place. But how could I? The vast majority of the students there had CP, so why did I feel out of place?
Because my cerebral palsy is so mild, I don’t share many of the same struggles as people with a more “severe” case of CP, but mild CP does come with its own set of challenges. It’s very difficult to “see” my CP, and if you know nothing about it, you probably won’t. Everyone with an invisible disability has heard the phrase “you don’t look disabled”, as if the observer’s incorrect assumption somehow trumps you talking about your disability.
My entire life changed when I went to college. My whole life I had been coddled, and I wasn’t even aware of it. My grades were terrible because I had no idea how to take notes. I had no friends because I’d grown up in an environment where friends were just “given” and not made. I had no idea how to socialize because I’d hardly ever spoken to anyone without disabilities before.
I remember when I made my first friend. I was so excited that the first thing I did was call the girl I was dating at the time and let her know. She didn’t understand why I was so excited. When we had our first conversation, my friend apologized for walking quickly. I remember thinking he saw my limp and noticed I was disabled, so I told him that I had cerebral palsy. That was when he told me that people tell him that he walks too fast all the time, and that he had no idea what I was talking about.
Oops. I just outed myself as disabled. I’ve never had that problem before. He’s going to think I’m strange now. But he didn’t. He just asked questions. “What is CP?” “Did you always walk this way?” “So, can you have sex?” “Is your girlfriend disabled too?” At first I was taken aback by his bluntness, but I learned very quickly that he was asking because he genuinely wanted to know me.
After college, I landed an internship at United Cerebral Palsy (UCP)’s national office in Washington DC. I stayed with a friend in Maryland who had CP “like me”, and it was during my time there that I learned something about myself that changed my life. I was living every single day in pain and I didn’t even know it.
When I was a kid, I had various orthopedic surgeries to help improve my walking. Anyone who’s had orthopedic surgery knows that when it rains, your bones sometimes ache in the affected area. I asked my friend to give me an aspirin for my “CP pain” because it was raining. She laughed at me, gave me a pill, and said “you don’t take aspirin for CP pain, you take this!” So I did, and the feeling was like getting your first pair of glasses late in life. Except instead of “oh my god, the trees have leaves!” it was “oh my god, the world doesn’t feel heavy!”
I didn’t know the world wasn’t heavy until that day, and I didn’t know the heavy feeling was actually chronic pain. The drug my friend gave me was called Tramadol, and I now have my own prescription. Later I would learn that half of people with CP have some form of chronic pain, and that almost nothing is known about it.
Now I work a full-time job at the Cerebral Palsy International Research Foundation in New York City. My life, for all intents and purposes, is “normal” as can be. I take the subway to work, I come home, I sleep and I do it all again the next day. If you saw me on the street, you’d likely never know that I was different, and that’s something that a lot of people with CP cannot say.
If you’re a parent of a child with CP, know that even though you won’t always be able to be there for them when they grow up, the best thing you can do is to teach them to self-advocate. I cannot stress this enough. Teaching your child to speak for himself will have an enormous impact in his life. There will be times when your child is going through things that you are incapable of understanding. That’s okay. Sometimes we just need someone to listen to us. If your child with CP is already an adult, let them be an adult. Having CP isn’t the worst thing in the world. For us, it’s the only world we know.
Finally, you’re doing a good job. We love you, and we know that caring for someone with a disability is probably just about as weird as having one.