The Ninth Grade

 

            I went to another school in the ninth grade, middle school, where I reunited with my old friends from the fourth and fifth grades and I had my friends from the new school. I know there was other grades in the school, but I hardly ever saw them.

            I had lunch before my study period, and that turned out to be the biggest blessing. Because I could not climb the steps to the lunchroom, it was in the basement again, I ate lunch in the office and got to know the teachers, principal, and secretary. Most of the time, I didn’t have anything to do, so I helped out when I could. Also, my fourth grade teacher’s husband was the principal. My mother and I would visit with them whenever we could in later years. They were a wonderful couple, as was everyone else in that school.

            The only trouble I ever really had was physical education. I soon found out that I couldn’t even play basketball as a guard. These girls really played! So, I had another dull period just watching others play.

            I am a very good student. I like to get things done and finished in the afternoons at home. If I went to school unprepared, I felt unready for the day. Thus, homework was completed after school even though I had all this time and was bored.

            . While I walked at school and around the house, I still used a wheelchair at the mall and other places where walking was longer. My mom wouldn’t go to town without me, and we had an incredibly heavy wheelchair. She would lift it in and out of the car. She got to be an expert at it and knew how to balance it. I don’t know how she did it. But my mom wouldn’t leave me behind for anything. I guess I was like about the only person I ever saw in a wheelchair back then.

            I don’t remember this because I was much younger, but mom told me about it. Our church was on a steep hill and you had to walk up many steep steps to get in. After dad wasn’t able to go to church, my uncle would carry me in every Sunday. Well, this Sunday he was helping the pastor. We got to the steps and there were men everywhere, but not one person asked if they could help my mother carry me inside. Mom managed somehow to carry me up those steps. She was furious when she told Hazel what occurred. It is a wonder we went back to that church, but we continued worshipping there.

            It takes a whole lot of determination, grit, stubbornness, or whatever you call it, to raise a handicapped person back then. My mother had it! She was my champion, my companion, my spirit lifter, and the one person I could tell anything to and she understood.

            I did not tell her everything about high school though.

 

Adjusting

 

            Hazel was there for all of us and her loss was, and is, felt for years in the family. Her three young children stayed with us for a few years until her husband came home from work and he married again.

            So, here we are again adjusting to a whole “new” normal.

            By this time, both my father and myself are doing pretty well. Dad has found a drug mix that helped the pain and he was sitting up, but he would never work again.

Adjusting to the loss of their mother was extremely difficult for my three cousins. And they had another set of rules here, which I’m know now had to cause them pain, joy, sadness, and fear. Deana and I were always close; we started kindergarten together, she came over every Friday night after I developed Dystonia, and our families vacationed together. David was close to my age and we were close too. Tim was so much younger and really needed more. This is where Dad stepped in. He became Tim’s best friend.

            In the fall of 1974, I had to switch schools. Mom thought maybe I could stay all day at this school which I could, but it had a lunchroom in the basement. When I think back on it, those concrete steps were extremely dangerous and I was blessed to attend the school for three years and not fall and break a bone! Because I went there, my cousins also went to that school.

I got to a point where I could “run” the bases in baseball and guard my cousins in basketball. When I say run, it was more like a stick figure fast walking.

            Unfortunately, as my walking improved, my mouth started to draw. It was like dystonia was telling me, “I’m still here! You can try, but I will always win!”

            I have a speech problem due to my mouth drawing, and my eyes are affected as well. I don’t blink enough. When I hear myself talk, I don’t recognize the voice. My head voice is much clearer than what comes from my mouth. When I slow down, my speech is a bit better, but not much. At least I can usually be understood, usually is an iffy word here. My head pulls slightly to the right also. Rather I am more comfortable with my head tilted to the right.

Allow me to describe myself today. My left side is pretty well normal. My right foot sticks out and I drag my right foot behind me. My right lower leg is bent and I am unsure where my knee is exactly. I fall effortlessly at times. Other times, I can stand still for some time. I can walk better than stand. My stomach pouches out because I feel safer with my knees bent than straight. My arm is usually behind me. If it is in front, it can attack me easier. Yes, I call my right hand it; it doesn’t really belong to me. Occasionally I can trust it to do something or carry something, but I don’t count on it. And then there is the neck and the voice. I am not a pretty picture, that’s for certain!

            But I am still trying! I have determination and strength of will that allows me to face each day with a positive attitude. Some would call me stubborn. But I will not allow dystonia to define me.