Personal View: What it’s like to be the girl in a wheelchair

I was born with a medical condition called cerebral palsy. It is a condition where you have a shortage of oxygen to the brain. I was supposed to be born in May. It is hard to live with it, but I do. I’ve been told that I’m strong and brave being in a chair. It has its disadvantages — like not being able to walk, doing things by yourself, and getting left out. 

Photographer: Aaron Houston

My parents know how it makes me feel, but do they? Do they know what it feels to have depression and anxiety and the weight of school on one’s shoulders? Sure, I act out sometimes, but do you know why? Because I need to process everything first and when you hear someone say, “It’s your fault for being in a chair” you feel like you are going to cry and make a fool of yourself. You feel the depression grow that you want to yell at the person who made that comment, but you end up making a mess and having your mom clean it for you. This was what a person said to me. This is what I felt. I felt heated. I felt angry. I felt alone and do you know what? I felt my depression grow into a pool of darkness that surrounded me like soldiers surrounding their enemy. That’s why I try to keep my head above this pool of water so I don’t drown and do something I’ll regret. 

I’m sure people who have the same condition have the same depression. They have all the appointments all the therapy and they must like me– like they can’t breathe. Like you just want to yell at your parents saying, hey let me breathe and take a break! I’m no superhuman! But instead, I’m scared that I’ll get grounded and keep my thoughts to myself. Sometimes I get so overwhelmed that I get angry and yell at my parents.

 

Photographer: Aaron Houston

 

Kyla works in class. (Aaron Houston)

Life has been a roller coaster. When I was little my dad was deployed  to Afghanistan where there was a war and for a while it was just me my dog and mom. We kept each other company. When my dad came back, we went to this hangar . . . I think  . . . and we waited for all the returning soldiers and my mom and grandpa waited for the door to be opened once dad came back. My mom and grandpa hugged him in the car. I was a little hesitant at first but I warmed up to him again since I haven’t seen him in so long.

I had many medical appointments and my least favorite, the Backlefin pump. Oh this was that a hassle. Mom had to get patches to help with the pain overnight, but the pump got the better of me and made me so sick. I had to go to the hospital. I even had to miss Halloween, but don’t worry I still got candy. When I had surgery to remove the pump, I woke up with the sensation of  staples where the pump was located. I asked mom why I felt the sensation. She said, “it is to help you heal, honey. The doctors have to pull them out when your body is finished healing.”

“Great,” I thought. “Another appointment.”

I’m a sister to a beautiful nine year old. My mom explained that this is  Chloe and I was going to be a big sister. When she was nine, the jealousy and the depression started. She could walk by herself and have less appointments and didn’t have to have a bus pick her up by a ramp.  We had problems. We had fights. I wouldn’t hurt her, of course, but I felt alone. I felt left out and then the pool started to fill up. More on that later. 

Life at school can be hard sometimes– especially for a person in a wheelchair. You have to push yourself to class and have someone help you to the bathroom, which is fine, but sometimes people don’t pay attention to where they are going.

Lunch is lonely for me. I sit alone. Sure there’s my aide, but still, I’m alone. All I have is myself to talk to. People think I’m going out of my mind talking to myself to hear myself think. But you know what they don’t do? Sit with me the girl in the chair because they think they are going to catch what I have like the flu. It’s not  contagious. Do people even notice me in the lunchroom? I won’t bite. All it takes is a little courage–which I have a lot of since I had a lot of appointments and shots in my legs every three months and last year I had another appointment at the children’s hospital for the dentist, so I’ve faced a lot of things. 

Thanks for listening.