First Year of College

 

            The truth is sometimes painful and embarrassing. But here goes. I went to a local community college because I did not do well on the PSAT’s. I did not even try the SAT. I panicked about the time, so instead of reading, I skimmed looking for answers. I did well on the math section, but the reading and language part, I bombed big time! Some people probably think I went to a community college just to stay home, but the truth was I didn’t want to go through another test that I knew would not end well.

            Everyone, EVERYONE, says I am so smart. I disagree. I study well. There is a difference.

            At community college back in the day, they had quarters instead of semesters. My first two quarters, I was just there. I went to class and came home to study. I existed, period. Between classes I went to the library, not to read, but just to pass the time until my next class. I was like a shadow roaming the halls, not really there but there.

            During my third quarter, a friend asked me to come to Alpha Omega, a Christian club that met twice a week. Once for Bible study and the second for fellowship. I was brought up a Lutheran and wasn’t sure what the Baptist did for fellowship. And Bible Study? Would they try to control my mind? Indoctrinate me into a cult of some kind?

            I recall talking to my mother about it. She encouraged me to go, just see what was happening. If I didn’t like it, I didn’t have to return. This was college after all.

            I remember how scared I was! I went on a Thursday fellowship, not the Bible Study Tuesday. That day, Tom came in carrying Todd! They were having fun! Laughing, joking, and the obvious class clowns! I think I was hooked at that moment. I relaxed and just had a great time with these Christians!

            They accepted me as a person, not as a handicapped person, but a human being very capable of doing what she wanted.

            It was like I could breathe! At last, I could breathe, and just be Jill. And I wasn’t hiding or a shadow. It felt wonderful, awesome, and amazing!

            I came home and talked about something other than the library and classes. I had friends, real friends!

            When they asked me to go to the beach on a retreat a month later, I said maybe. But again, Mom encouraged me to go and enjoy. So, I did! What a wonderful experience! I didn’t sleep, but just being there was great for me.

            Alpha Omega preformed skits, led songs, and if asked, discussed how Jesus had changed their lives at various churches. When asked me to go to church’s youth lock-in or sleep over, I said, “I’ll go, but I am not doing anything.” That night I had fun just watching until…Tom came over and said they really needed me to play the choir director for one skit. Please? What could I say? I saw the skit at the beach and knew what to do. So very reluctantly, I said I would. Getting up in front of those teenagers was the hardest thing I have ever done. I thought they would laugh at me, or say something negative. But you know what? They didn’t! And after that, no one could stop me from helping wherever and however needed. That night changed me forever. No longer a wallflower, I began to bloom! I still have my little things that would be addressed later, but for me to get up in front of youth group that night, was life changing!

            I finally found my place, my peace, my purpose, and the faith that I could accomplish anything.

 

The Best Things About High School Years

 

            I got my driver’s license!

            You know I can only control my left side, correct? No one, including my grandfather, thought I could drive except my mother. Maybe my father, but he wasn’t driving then. So, it was up to my mother to teach me to drive.

            We went to a place where houses were scarce and she gave me the car to drive. Like any new driver I was scared of messing up, or doing something wrong so it was slow going. But as I learned more about the car, I found I could do it.

            One time my mother said, “Stop!” I did and would have put us both through the windshield except for our seat belts. I looked at her and said you scared me to death! She explained her father, a truckdriver, did not believe I could stop fast if necessary. I proved him wrong!

            About two months after my sixteenth birthday, we went to get my license. When mom told the trooper I drove with my left foot, he said it was impossible. Mom said, “Take her out and try it. If she doesn’t pass, then she won’t. But give her a chance.” When we came back, he was writing out my license!

            Mom also wanted it on my license that I was restricted to a steering knob. I didn’t like that, because I went through driver’s education without a steering knob. She said it was safer with a knob. Looking back, I can see her point and yet without a knob, I cannot drive. Which means I am limited to my car.

Mom also taught Dale to drive because Dad wasn’t patient with Dale. He would drive to and from the bus stop on a very steep, rocky drive. Dale recently told me since his left leg wouldn’t bend, he had to drive with his seat back and could barely reach the steering wheel. But he did it!

We had one special mother!

Other good things about my high school days. I had a best friend. Oh, I had friends throughout school and a few I would say were my best friends. By nature, I am outgoing and making friends was easy for me. But this was senior year and we were close. I was often at this young lady’s house and she at mine. It was great to listen to records and talk about boys. I would go on to have other wonderful friends from high school, but there was something great about having one special friend.

And the boys…I was sort of infatuated with two I can recall. Of course, they always treated me like a kid sister, but at least I got some attention from them.

I had theater in high school also. I wasn’t in the play, but I tried to help out as much as I could. I think the guidance counselor didn’t know where to put me, so I had two study periods for two years. I would often grade papers for my teachers and enjoyed that.

They say that high school is about finding yourself. I think high school is all about fitting in and while I tried, I could never quite find my place. I wanted to drop out because of the bullying, but my mother wouldn’t let me. I am so glad she refused to let me quit because the next year, I would meet people who would change my life.

On to college!

 

The Worst of High School

 

            I am going to tell you three of my worst stories about high school and in the next blog, I will tell you some good stories about these years.

            Occasionally I wish I was more like my brother.

            Following his year at Western Carolina Center, Dale was bullied. He was about 14 years old and on crutches. One day this boy tripped Dale and was laughing. Dale picked up a crutch and said, “If you ever do that again, I will beat you with this!” The bullying stopped for Dale that day.

            If only I had some of that fire inside me.

            I started yet another school as a sophomore. This school combined two smaller high schools together. Now before you think I had trouble with my own grade, I didn’t. Everyone from the other school was great. But we had two other grades that wasn’t always nice.

            The first story is about chairs. We had big comfortable beanbag-like chairs in the hallway upstairs. Of course, there wasn’t enough for everyone, but they were extremely comfortable the one time I sat in one.

            Again, I ate by myself upstairs. I suppose I could have gone to the lunchroom, but by this time I was sort of afraid of crowds and couldn’t carry a tray. The simplest thing was to eat by myself. I did this throughout high school.

            One day having finished my sandwich early, I thought I am going out to sit in a chair. I deserve it! So, I walked out and settled into a soft leather chair. A few minutes later, a few of the football team came and sat in the other chairs. As other football players came and didn’t have a place to sit, they started making fun of me. I knew what they wanted - that chair. Instead of getting up and giving it to them, which maybe I should have, I sat there and listened to them. No way was anyone getting that chair! And man, they tried! At 11:55, I got up and heard them dive for the chair but didn’t look back. I had ignored them and won!

            But as I walked to my locker, I relived what they said and tears started to flow. When I reached my locker, I was crying uncontrollably. My friends asked what was wrong. I don’t know what I told them.

            In my junior year, the chairs were removed.

            The second story involves a teacher. I really didn’t know what classes to take my senior year. So I decided to ask a home economics teacher if I could take her class. She said no. I couldn’t do this or that, so no.

            I remember walking up the steps to a landing and just crying. I was so angry at this woman and feeling like a failure.

The funny thing is that when we had to sign up for classes, my guidance counselor suggested I take home economics. I told her that I had talked to a teacher who said no. She said another teacher would take me, no question about it. In my senior year, I had home economics and did just fine! I am not saying I am a cook or a dress maker, but that experience taught me I could do anything I really wanted.

Third story is about bullying. Senior year was particularly difficult. You see in order to get to the home economics class, I had to ride the elevator down, pass a busy and noisy lunchroom, and go by some sophomores sitting in the hall. Normally this doesn’t sound like a big deal until you find out these guys from shop class bullied me relentlessly. They called me names, made fun of me, and in general made me pray to be invisible from the time I turned the corner until I got to my class.

I should have told someone or stood up to them. Now, I know what I would have liked to do to the leader of this group. But then, I was so afraid to rock the boat! I never told anyone. I thought if I told, it would get worse. I even tried walking around the other way to avoid them. They saw me and man, it was on then!

One day, their teacher was standing in the doorway and heard them. He immediately told them to get in the classroom, now! I have no idea what was said, but I do know that they stopped insulting me.  

One last story about the prom. As a junior, you had to sell candy bars or something in order to go. Well, I wanted to go to prom. I sold my candy, got all dressed up, and sat with some girlfriends until they left and then sat by myself, and sat there. When I came home, Mom said asked why so early? I started crying. I told her I never wanted to go to another prom!

In high school I prayed daily, hourly sometimes, “God, please let me be normal.” But God had other plans for me. And what is “normal” to God?

Okay, now that I have gotten the bad stuff out there, on to the good!

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.

 Hazel

The Best Day - The Worst Day

 

            Before I get into that day, allow me to return to my schooling. I began school a year late, but I had a terrific home-bound teacher for the first two years. Thank you so very much, my friend, Mrs. Watson! I don’t know what we would have done without you. You were a great friend to not only me, but also my parents.

            I had a different home-bound teacher for the third grade. She suggested I try going to school, a real school, for half days! I was excited and nervous that first day, as you can imagine. She arranged for me to start in the fourth grade, my natural grade, because I was good in math. I stayed in fourth grade for math and went to third for English.

That summer, my mother taught me English so I would be ready for the fifth grade next year. Talk about a hard teacher! My mother was the roughest one I had so far. The next year, I started with my class again but only to lunch.

I was still confined to a wheelchair, but would get out of it and sit at a desk in the fifth grade. It also worked out well that there were no steps at this school.

Surprisingly, I got along very well at school and loved my classmates!

During that fall, I started pushing my wheelchair back from the water fountain. Occasionally, someone would sit in the chair and I would push! Talk about a reversal! Also, I was walking at home.

I went from this girl screaming in pain to someone who could walk! And it only took me four years, more or less.

Then on January 17, 1974, we were all outside. It must have been a beautiful, warm day in North Carolina because my dad and mom were working on a pretty steep hill beside the house.

I asked my mother if I could try walking down the hill and she said yes. I made it down! Now comes the hard part, going back up. I made it! I was so happy! I had just accomplished something I never dreamed of doing – walking up a hill! I wanted to be sure I could do it again, and I did. I was so elated! I could walk! Yes!

After we came in, my mom said Hazel had always said she couldn’t wait to see me walk down her hill. They lived in a valley close to my grandparents and walking there was pretty easy then. In my euphoria, I had forgotten. I wanted to go, but Mom said let’s wait until tomorrow when you are rested.

Sometimes best plans are never fulfilled.

Later that day, Mom got a call from Dean, Hazel’s husband. He called an ambulance and asked if mom would keep the kids. Mom was out the door like a shot. She came back with Tim and David, ages six and nine respectively. Deana, age twelve, who was my playmate and best friend, stayed with my uncle. Everyone knew it was bad. Even I knew it was bad because the boys were subdued and quiet.

Somewhere around 7:30 or maybe 8:30, we were watching The Walton’s when the phone rang. It was my grandmother calling to ask if mom had heard anything. While she was on the phone, my uncle came in and told my grandmother that Hazel had died. My mother later said my grandmother screamed the dreadful news. Tim was sitting next to mom, David next to Tim, and I was next to David.

My mom lost it. She didn’t say much and afterward she would deny even crying in front of Hazel’s kids. But she cried out, cried as quietly as possible, and dropped the phone. Dad crawled to the kitchen to get her something to help. She was shaking so hard, Dad had to hold the glass she drank from. I have never seen my mother lose it like that.

I was eleven and didn’t know what to do, so I did nothing. I kept watching TV. I was certain the worst had happened, but felt like the best I could do was watch TV and keep up appearances for my cousins. So, I tried to ignore everything and focus on TV as did my cousins. No one said anything. Maybe Hazel was still alive but in bad shape.

Later, mom gave my cousins a bath, and then they went to my aunt’s house. I had a bath and went to bed. It was only as I was in bed that I asked my father if Hazel was dead. When I started crying, so did my dad. I had never seen my dad cry, so I quit and stuffed it down. My dad went to the living room. I heard Mom come in and they cried together and whispered all night. I finally fell asleep.

        The next morning, the house was full of people. It wasn’t a nightmare. My favorite aunt, the one person we all relied on for years, my other mother, was gone at age 34. 

 My cousin, Deana, and myself at a picnic.

Our New Normal

 

            Following Dad’s surgery, I remember playing in the new house and Mom telling me not to talk to Dad. You see every movement he made, every time he spoke, he was in pain. I know he watched me playing, but I don’t think we said much, if anything.

            I remember Mom feeding us both and herself at dinner. My mother made a joke of feeding me first, dad second, and herself third. It was a weird little ritual that didn’t last long.

            I recall both me and my father lying on two couches, and we each had a stick we would use to alert mom when the phone rang, or when we needed something. From the basement, my mother worked for my uncles seaming together the toes of socks.

            Mom was the bread-winner now that my father could not work. She suddenly had all the responsibility thrust on her. It wasn’t anything she ever wanted, but without my father to consult with, (remember that it caused dad pain to talk) she had the whole family to look after and bills to pay. She was our support, our encourager, our comforter, and our everything. All this and more, and she didn’t complain.

            Mom often said she had to grow up fast and learn to talk not only for herself, but also for us.

            I realize now that my mother must have been depressed and worried at times, probably a lot of the time, but she hid it from me.

On Dale’s last day of high school, he went without crutches! That was a great day for us all!

            Dale had a dream of going to college and as with everything else, my mom found a way. She adapted two bags for Dale to carry with his crutches, (Dale still could not walk far without crutches) and my grandfather and Hazel’s husband paid for a typewriter. In the fall of 1971, we said goodbye to my brother.

So, from here on, it was basically just the three of us.