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Featured Speaker, Bert Hellyer
Let me ask a quick question, why do you think I’m in a wheelchair?
What I have is called cerebral palsy. The definition is, a non-progressive disorder resulting from damage to the central nervous system especially before or during birth and usually characterized by spastic paralysis.
Basically, when I was born, either while I was taking my trip down the birth canal, or soon thereafter, my brain was exposed to too much oxygen. The central nervous system is like a chip in a computer, it takes the information from the brain and directs where it needs to go. When the brain gets too much oxygen, the oxygen acts like water on that chip. Now I don’t know if you have ever seen a computer that has been thrown in the bath tub, but chances are it’s not going to work.
There are a broad span of disablements, depending on how much oxygen and how long it’s administered. They range from, just walking with a slight limp, to totally bed ridden, unable to move or speak. To me, that is the worst, because the brain is strong, able to think just like you or I, but once again the message from the brain is not able to get where it needs to.
You may be asking how something like that happens. For me, it started in the winter of 1972. My mother, at age 38, was having symptoms of being pregnant, so she went to the doctor. At that time he thought, with her being older, that she was going through menopause and sent her home.
Four months later she was at the hospital with pneumonia. As they did x-rays on her lungs and, surprise, they found me. After running tests, it was determined that I was going to be developmentally slow. The doctor told her that a child like that would be hard to raise and she should abort. She refused, and on June 18, 1973, I arrived, weighing 4 pounds, 4 ounces.
My mother would not see me long, because I had a lung problem that if not treated, could end this life before it started. So they put me in an incubator, stuck me in the head, wrists and feet with needles, and took me to Riley Hospital for children. This is where I spent the first four weeks of my life.
After leaving the hospital, everything was fine, or so they thought. Around six months old, my family started noticing that I wasn’t doing things a sixth month of should do, like rolling over, crawling, or holding my head up. So once again I would visit Riley. This time, however, they could not give an exact diagnosis. Tired of hearing maybe this or that, my mother heard from a friend about a hospital in Chicago. Shriner’s Hospital for cripple children, at age 3, I was diagnosed with C.P.
I went to preschool, like everyone, the only thing that set me apart on graduation was that I was the only kid on a tricycle. Now elementary, that was where I first noticed I wasn’t like the rest of the kids. Up until the later 70’s, it was believed that if a person was mentally or physically handicap, they couldn’t be a productive part of the society. My mother didn’t share that thought, so she fought to get me into regular classes. She won and I became the first handicap person to be integrated into my school corporation.
However, the public school was not equipped with elevators. Even thought there was a school just blocks away from the house, I had to be bussed across town, to the only school that was only one level. The bus driver never heard “Jonnie threw a spit wad”, but on occasion he heard “Jonnie popped his glass eye out”, as it rolled down the aisle. I rode the bus that had a wheelchair lift on the side. I was the only passenger on the bus that wasn’t from a group home. I would hear stories about how families dropped off their mentally or physically handicapped child, never to be seen or talked to again. I learned I was very lucky to have a family who loved me.
There is one human behavior that I got to know real soon, people tend to stare at what they don’t understand. When I question my mother about the stares, she told me not to let it bother me, to be myself and they would forget about the wheelchair. That was something that remained true throughout my life.
Outside of school, I managed to have a pretty normal life. I had neighborhood friend that I would ride bikes and play baseball with. How did you do that do you ask? Well, for baseball, I would catch and hit on my knees and crawl to the base. I had a three wheel bike that was fun to ride, that was until I tried to take a corner too fast, tip it over, and then one of my friends would ride back to my house to get my mother and set me upright, and we would be off again.
I managed to make it through high school, so it was off to college. I went to Vincennes University and studied computer aided drafting for one year. However, I would not return after that year. Little did I know that after that year, my life would forever be changed?
My mother, while raising me, had beaten cancer once in the early 80’s. When it came up again, I didn’t think too much about it. On August 1, 1995, I lost the one person that had made me who I was. I never made it back to school again, I couldn’t. Years of mom handling everything would now be up to me. Believe me, I grew up fast.
I met a girl 2 years later that I married and had a child with. Unfortunately, the marriage did not last, but we are still friends and most importantly great parents. My son doesn’t see the wheelchair or walker, he sees dad. Hopefully, I can be as good raising him as mom was with me.
No one knows what’s going to happen tomorrow, but I’m sure it will be interesting. I do plan on going back to school one day soon, and next year I hope to start playing pro wheelchair rugby with the Indy Quad Squad.
As you can see, my life hasn’t been easy, but it’s still mine. As I leave, let me leave you with worlds from my favorite artist, “Through every dark night there’s a brighter day”.
<Learn more about Cerebral Palsy
