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ME?

I put a question mark here because I've struggled with how to go about writing about myself. I'm not the kind of person that truly feels I've done anything special. Yes, I've had Spastic Cerebral Palsy since birth, but I think I've lived a relatively normal life. I'll admit I've done a few things I was never supposed to do and I've lived through some things no one should ever have to experience. On these "About Me" pages I will try to put the words that will tell you about my life, because in order for you to get to know me...you must know where I came from and where I am now. This will be an on-going page and I don't expect you to read it all at one time (unless you have a lot of time on your hands).

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Or you may send donations to:

National Bank Of Commerce

115 West Main Street

Bedford, VA 24523

Please note that it is for the Lynn Orange Handicapped Van Fund when sending donation!

THE EARLY YEARS

My grandfather was the first to notice something was wrong with me as an infant, but I was about 2 years old before I was diagnosed with Cerebral Palsy at Shriner's Hospital For Crippled Children. In the two years leading up to a final diagnoses my parents were told that I had almost every disease or disability known. One doctor had the nerve to tell them I was severely mentally retarded and should be "put away and forgotten about." I thank God that my dad worked with a Shriner that told him about the hospital.

Now I'm sure some of you may be wondering what caused the CP...well...no one was ever really sure. It could've been from a fall my mom had while pregnant with me (supposedly trying to miscarry because she didn't want to be "fat, ugly and pregnant"), the fact I was born with jaundice (I doubt this one), I wouldn't breathe at birth, I was born too fast, or because the doctor used an adult oxygen mask turned up all the way to finally make me breathe. Please remember this was before the invention of pediatric oxygen masks and the doctor really had no choice...it was the adult oxygen mask or my death.

By the time I was two and a half my parents marriage disintegrated. There were problems between the two of them and having a disabled child does add to the stress factor. My dad was given custody of me in the divorce, but due to his work schedule my grandparents ended up with the task of taking care of me when I wasn't in the Shriner's Hospital.

I spent weeks and months at a time at Shriner's Hospital and rarely saw any family. As young as I was (four years old) I know I suffered separation anxiety, and I can still remember how alone and lonely I felt. We were put in wards according to our ages, 0-12 years old in one ward and 12-16 years old in another (no one was treated by Shriner's after the age of 16 back in that time) and of course we were separated by gender...there were wards for boys that were also separated by age. I remember nights of being homesick to the point of crying, but if you cried it had to be hidden from the nurses, because if they heard or saw you crying you were taken away from everyone else and put in isolation. Isolation was a very large bathroom with ugly green ceramic tile and shiny metal bedpans lining one of the walls. NO ONE could hear you there at all...not even at the nurses station! I guess this was part of the beginning of my learning to be tough and resilient and my hatred of green ceramic tile.

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Or you may send donations to:

National Bank Of Commerce

115 West Main Street

Bedford, VA 24523

Please note that it is for the Lynn Orange Handicapped Van Fund when sending donation!

It was also during this time that something else was ingrained in my personality...the ability to adapt to any given situation. This gift was given by a little lady from Germany that was a physical therapist at Shriner's hospital, her name was Ms. Pristy and she was tough as nails on everyone. From the ages of 2 - 4 I walked with "knee braces" (they were braces from my feet up to my knees), at 4 years of age it was decided that I had to undergo "leader extension" surgery because the CP was causing the muscles in my legs to tighten so badly that without it I would be sitting on my feet all the time. After the surgery I spent a few months in a body cast that went from my armpits to my toes and kept my legs apart from each other. Just above my ankles there was a bar that went from one leg to the other which no one knew went completely through my legs until after the cast was taken off. However, I remember fainting when the cast was removed and the doctor jerked my legs apart quickly to pull the bar out! After this surgery I had to learn to walk with full braces (hips to feet) and crutches, and Ms. Pristy was the teacher.

Part of learning to walk with braces and crutches is learning how to fall safely...something I'm not sure I ever really mastered. It is my understanding that children that walk using assistive devices are now always taught by falling on well padded mats. Ms. Pristy didn't believe in mats of any kind, her words were, "When you fall you must deal with the elements! You don't fall on mats! You fall on the floor, sidewalk, pavement, steps, or anywhere else you may be!" She would take you to a clear section of floor and say, "Fall." If you didn't fall she would kick your crutch out from under you or hook your foot with hers to make you fall. The idea was as you start to fall you throw your crutches away from your body, make sure your arms are out as though you are flying, tilt your head back so you don't hit your face and take the brunt of the fall on your chest and stomach. In my case, I used shoulder crutches and there was a strap on my left crutch to hold my left hand on the handgrip...so my crutches couldn't actually be thrown away from me. Everytime I fell I had to pray the shoulder part wouldn't bash me in the face or that the handgrip on the left crutch wouldn't break my fingers. Ms. Pristy also taught us another bit about life...she always said, "You must learn to adapt to your environment because no one is going to adapt the environment to you. If there are steps, you either learn to walk up them or you don't go where they are." This was a long time before the Rehabilitation Acts or ADA (Americans with Disabilities Act), so at the time she was correct. At age six I was finally allowed to stay home on a more permanent basis and have quarterly check-ups at Shriner's hospital. It was also around this time that my dad decided to marry again...

He definitely had the blinders on when it came to her! Even my grandfather said she was a "hypocrite." She acted as though she was crazy about me in order to "hook" my dad. Unfortunately, it worked for her, but after the marriage she wanted no part of me in the picture. They got a place together and I remained with my grandparents. Each evening I spent a few hours with them and was then returned to my grandparents. Eventually she got pregnant with their child and I became a cross my dad had to bear. My half-sister was born when I was eight and I started being pushed out of the picture. This was not a case of sibling rivalry or jealousy...this was fact. On more than one occasion my dad said, "It's easier to take her places, there are no braces or crutches to deal with." It was also at this time that he became highly critical of me and short tempered. He seemed to always want to say things that would tear me down rather than build my self-confidence. When I turned nine my worst fear came to pass...they bought a house and I was expected to come live with them.

Or you may send donations to:

National Bank Of Commerce

115 West Main Street

Bedford, VA 24523

Please note that it is for the Lynn Orange Handicapped Van Fund when sending donation!

 

It was only natural that I was reluctant to leave my grandparents since they were the only stability I ever seemed to have in my younger life. Soon after moving in with them the physical abuse from my stepmother started...it was slow and creepy. She started by acting like a Drill Sargeant...from 9 am until noon and 2 pm until 5 pm I had to constantly walk up and down the narrow hallway of the house without stopping, if I stopped I was beaten by her. My braces were extremely heavy, my muscles always fought me and I've always had a weak respiratory system, so the doctors had always said for me to stop after ten to fifteen minutes of walking and rest by either leaning against something or sitting down. She would also beat me if I fell. I remember a time when I stopped to catch my breath by leaning against the wall at the end of the hallway. She realized I had stopped and stormed down the hall with leather belt in hand screaming at me to get moving. She stood behind me, hitting me repeatedly with the belt, and while I was trying to move fast enough to get away from her, my brace on my left knee came unlocked causing me to fall. She continued to beat me, moving on to using her fists on my back and hips. Yes, I had well covered bruises which were finally discovered by my grandparents after a visit with them, even though this had been going on for months. The bruises were very well defined including knuckle prints. They were brought to my dad's attention and he then asked her about it, her comment was that she was "correcting" me, and my dad dropped it. The next day she said if I thought it was bad before I was really in for it now. She started taunting me about how easy it would be for me to fall down the steps in the hallway that led to the basement. There was no door blocking the stairs and she would say, "Your braces could just come unlocked and you'd fall, and there's nothing I could do about it." The other threat was that she was going to see to it that I was put back into Shriner's hospital. She pushed my dad into writing them saying I was lazy and refused to walk or do anything for myself. He received a letter in response saying an appointment had been made for me at their regular clinic (clinics were usually held once or twice a month) on May 28, 1973.

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