A Little Clumsy, A Lotta Heart

It was September 12, 1970 when I was born. I didn't know what was wrong with me ‘cause I was a baby. But I had some kind of swelling in the brain. My brain was fine but there was liquid in my skull putting pressure on it.

I have what they call Cerebral Palsy. (What is Cerebral Palsy? A congenital disorder of movement, muscle tone, or posture. Cerebral palsy is due to abnormal brain development, often before birth.)

They tell me I needed to have an operation. There was another little girl that had some emergency issue that took the entire weekend. So, by the time that they got around to having to perform the surgery for me, they looked at it again, and miraculously the liquids had drained away and off the brain and had relieved the pressure on its own. I had to stay in the hospital for 6 months, I think. (Mom and Dad say I got to come home when I was 3 months old, actually.)

When I was 5, (the way I remember it), I was declared legally blind. When I was reading my Beatles’ vinyl, I couldn't really read the words and that's when I realized I would have to wear glasses. And had to write (and read) in BIG print. I was trying to do the lines with letters on the white pages where I couldn't see the lines. They gave me a type of green paper, well white paper with green lines actually so that I could see them better. And, that's when I ended up writing the big letters. I mean, I write small but I write big letters.

Then... they found out I had cataracts and they took those out-- maybe around the same time as grandma's, but I’m not sure. After that, I couldn't read well. The pages were put up on the TV under a screen so that I could see the big words projected onto the TV so I could see it better and that went very well. And sometimes, I'd use magnifying glasses as well.

Well, I was about 10 and I was trying to climb the monkey bars and I thought I could go way up high but I couldn't and I lost my balance thinking that I had it. I sprained my right leg. And I started to get up and I couldn't hardly put my foot down on the ground. I went to Trident Hospital in Greenville. They put a cast on my leg and then it was fine, but I felt kinda funny. Turns out I had chickenpox with the cast.

Then, they were taking the cast off... I was gonna get a brace but couldn't get it... so I ended up wearing the cast for a longer period of time. Then they had to bandage the top of the leg and I couldn't walk at all with just the bottom of the cast and only the bandage without a brace to help me. The brace would eventually help me walk and I would wear it at night to keep my leg straight and protected. I realized when I wore it, it felt like the heel of my foot was stinging with the brace…

And, after the brace, I felt better without it. The brace was meant to lengthen the right leg so that it matched the other leg and that would help me to be able to walk better rather than limp. It felt like my limp was bad, but it felt better after… my leg was moving. And I kept walking without a brace.

So, yeah, I have a wheelchair. I use it when I travel, and it helps when I have to walk long distances. Because I started when I went to like Disney and Universal. But in 1983, I realized I wasn't feeling well. I had to go to the emergency room to see what was wrong. They realized I was sick from the heat. I got overheated. Then, after I got better and the next time we went on a trip, we took a wheelchair.

The wheelchair helps me since I can't walk long distances. And the only time I really get up to walk is if we are standing on the escalator (moving walkway) like at Universal or if there is a hill (an incline) then I stand up to walk and move my legs.

I walk and swim to exercise my legs. And I have physical therapy at the Medical U (MUSC). Then, I did a lot of walking and on Tuesdays. I would swim and do laps versus the treadmill at PT on Thursdays early in the morning. I did stretches and walked for a certain amount of time.

In general, as long as I look where I'm going. Like y'all say, "John, look up." Or "Look down when you're going down the stairs." I feel like I'm ok. I have good balance but sometimes I tend to lose balance, but not all the time. I think the loss of balance has a lot to do with age, alright (I’m not that old), maybe some with sight, but perhaps some due to cerebral palsy.

I feel like my sight has evened out and is kinda gonna be what it's going to be. The foot and leg are what they're going to be. If the surgery and brace had not have worked, I’m not sure… It would have hurt and it would have made me feel uncomfortable and different if I was still limping. When someone says I have Cerebral Palsy I sometimes feel depressed because I don't know… I hope no one makes fun of me. But sometimes people you don't know and they might make fun of you.

Due to my Cerebral Palsy, I will continually have to work my muscles because the disease causes atrophy. If I'm sitting for a longer period of time it's harder to make the muscles move. I'd attribute that to the Palsy and not necessarily age.

I'd like people to see me the same as everyone else, just a person. I wanna say the same but can't be sure of that... I don't mind being thought of as different because a lot of people are different. I'd like them to see my personality. I'm a nice and good person and would like them to see me as I am and not judge me on my disability.

Advice for someone who meets another person with a disability- treat them nice, be kind, and don't make fun of them.

Advice for those with a disability and living their lives- I was blessed and lucky enough to have a support system but for those who may not, I'll say if someone comes up to you and talks to you and you don't like to answer or feel uncomfortable then you can say I have "Cerebral Palsy" and tell them not to make fun of you.

If there's anyone reading this that wants to reach out, I'm here to talk! Drop me a line. 😊