When My Parents Met

 

            I am going to take a break from me and tell you about my parents and brother. It seems like a good place.

            Mom was working in Hickory as a pairer with three other young women. At that time, matching socks together was an important job in a hosiery mill. Many years afterwards, Mom lay our socks out on her lap and pick out the color, size, and length from the toes because of this job. Man, I miss watching her do that!

            Clara and Ruth were two of the four pairers at this hosiery mill. Clara was dating John, and John was Ruth’s soon to be ex-husband. It was Ruth’s choice to walk away from the marriage as John received a “Dear John” letter while serving in World War II. My mother and Clara were soon working side by side because they were the best. This is the background of the hosiery mill. Got it? Ah, the hosiery mill gossip!

            One day late in June, Clara asked Mom if she would like to date John’s brother. You see, John lost his license, and Clara wanted to see John. My mom said she would have to ask her mother. I feel certain that mom left out the fact that John lost his license due to drinking or mom would never meet dad. My grandmother grew up with an alcoholic father and could not abide drinking.

            Anyway, Clara got to see John and my mom met my dad. The first thing she saw was a tall skinny man wearing green pants and a blue shirt! My dad was color blind with those colors, she would later discover. Dad also had amazing, beautiful blue eyes, not a dark blue, rather a light, friendly blue. I think of his eyes like the color of the sky on a cloudless day. People said they twinkled and they did often when he smiled. I always wanted his blue eyes; mine are grey, switching from green to blue depending on what I wear.

            My mom said she was a quiet person and my dad was also, but they could talk to each other. Apparently, they got along very well, and the next week they double dated again in John’s car. Dad told mom that he was surprised she would go out with him again because of his limp. I love Mom’s reply, “What limp?”

            By the third date, Dad bought a car and they went out alone for the first time.

 

Second and Third Operations

 

            The second cryothalamotomy was for the right side. Remember I am improving a bit on the left side. This surgery was performed in June 1969. I don’t recall this one that well. I do know they shaved my head all over again, but I was expecting it this time. Dr. Alexander was furious. He said they shouldn’t shave my head to where I was bald! There wasn’t any improvement this time.

            So, I had my third surgery. That would be in December 1969 for the right side. This time I was home for Christmas! I recall certain things about this one.

            First, I was working on a Christmas skirt for the tree with my first grade, homebound, teacher when the call came for my surgery date. Mom came upstairs to tell me thinking I would be distracted. I remember that all I wanted to do was finish my masterpiece and stay home. We did finish the skirt, and we have put it around the tree every year. I still use that homemade Christmas skirt. It reminds me of how far I have come.

            Second, Dr. Alexander shaved my head! He wasn’t trusting anyone else to do it. As I said, we had gotten to be pretty close by then. He carefully shaved only the top of my head. I’m not sure he did me any favors though. Instead of looking like a cue ball, my hair was growing on the sides with the middle missing; a backward mohawk, if you will. it looked weird. But he tried, and it did grow back.

            Third, I remember lifting both my arm and leg without any movements for Dr. Alexander during the operation! I think when we both saw that, we felt like rejoicing! I do recall a bit, just a tiny bit, of resistance when I put my right arm back down. (Maybe I am recalling another time.)

            Fourth, the next day I ate a hamburger with both hands! Now I know it is a small thing that most everyone does, but for me this was a major improvement!  If I want, I can remember the feel of that hamburger laying in both my hands! Just think a minute, one day my movements are so bad I cannot eat by myself to two days later, when I can hold and eat a hamburger all by myself! You see, when one part of the body moves, it messes up the other side too. (I can tell that as I type this.)

            Fifth, the uncontrolled movements came back. I am not sure why but by the time I got home, five days following the operation, I was back to where I started. That was like reaching heaven only to be told you are going back to hell.

            But I gradually started improving.

            It was a few years later when Dr. Alexander wanted us to “meet” a colleague of his. I was still in a wheelchair at this time, but I remember my mother and Dr. Alexander talking about “legions.” Dr. Alexander had forgotten I knew exactly what they were discussing! He wanted me to go to Canada for another surgery! By the time we saw this other doctor, I was in tears! I didn’t want another surgery! Been there and done that! This other doctor said he would not recommend it because when I cried, I was relaxed. Thank goodness, I think. Maybe if I had gone, I would be well now, or I could be so much worse. Oh well…

            It is best not to look back; just go forward with what is. Go forward, I have.

 

 

 

First Operation

 

            Oh yeah. Did I forget to say there was more than one?

            Actually, the first two should be together. I was so young, possibly the youngest person to have this operation then. Dr. Alexander thought it would be better to put me to sleep to drill the holes in my head.

            Yes. I have two holes (Does that explain some things?), a stitched scalp, and about thirty years later will have yet another hole with electrodes! Oh my!

            Back up, Jill. It was December of 1968. I turned six a few weeks ago, but the date went by me. A lot of things went by me then.

            Okay, this is what I remember and later heard. They started cutting my hair! Now, I had a beautiful head of long, dark brown hair. Everyone said so. I didn’t know what was happening either. Totally taken by surprise, of course I fought. Nobody was going to cut my hair! After they strapped me down, they started shaving. By this time, I was a crying mess. When Dr. Alexander entered, he was angry, not at me, but at the staff! You see, they were supposed to wait until I was asleep to shave my head. I think I remember he got them out of the room and talked to me. I calmed down and then they were able to put me to sleep while Dr. Alexander drilled burr holes in my skull. Remember I was only six.

            Mom didn’t recognize me. My head was swollen and bandaged. My dad knew me though. That was the first step for me.

            The second surgery is called cryothalamotomy. It is when neurosurgeons freeze the part of the brain causing movement. (I don’t believe they perform this operation in the United States now.) I had to be awake for this one. You would think I would be scared to death, but I guess I was naïve and trusting. Because of the trauma of losing my hair, I trusted Dr. Alexander and wasn’t too afraid this time. I don’t really recall much of this, but Dr. Alexander told my frightened parents that I did as good as if I were his child. I think the first one sort of bonded us, when he sent my tormentors out of the room.

            There was a reason I had to be awake. I had to move when he asked; left leg up, left arm lifted, etc.

            You see, my left side was extensively worse than the right. And you could only operate on one side. The brain doesn’t function like we would think. By helping the left side, the surgery is on the right side. It sounds weird I know, but that is how the brain works.

            My parents did not have a choice. It was either the surgery or I would develop pneumonia and die. I was all bone and muscle. At six, even my mother could easily pick me up and carry me on her hip. Dr. Alexander assured them it had been done on children, just not one so young.

            I was at the hospital for Christmas that year. The doctors released the other children for the holiday. I was one of two kids on the whole floor. I remember they wheeled me to see this other child. I think he or she was in worse shape because we didn’t stay long.

            It snowed that Christmas Day! It was the first time I had seen snow at Christmas. I remember watching it from the bed.

            It took a while, but gradually I was able to scoot around using my left leg and left arm!

That was a miracle and a blessing!

 

First and Second Stay at Baptist

 

            All I knew about hospitals I learned from my cousin who had her tonsils removed. She said that she got as much ice cream as she wanted! Cool, I thought. I wasn’t quite prepared for what was to come.

            The first stay at the hospital lasted a few days, maybe a week. I must not have been very bad then, because I recall my roommate pretty well. She was a young African American girl, and the four of us became friends. Her mother was single and had to work but hated leaving her child. Mom told her that she would look after her child like she was her own.

            The second trip to Winston was different. This time I was there for a month. I had gone downhill, and they had to check for everything else before I had surgery. I know this distressed my parents terribly. What parent thinks of brain surgery and feels great? Mom told me she was crying as much as I was when Dr. Alexander took her from my room and told her something like, “You either get your emotions under control, or I will ban you from the hospital. You are not helping her at all. It is your choice.” At first this made mom angry, but it was the best thing anyone could say to her. I was picking up on her distress. Mom hardly ever cried in front of people again. That can be a very bad thing, holding your emotions so tight. But at the time, it helped me.

            I was put in a ward with three other girls; one had third degree burns. If you’ve ever burned yourself on the stove or from grease spatter, you know it hurts. Well, imagine how much pain this young girl was in. I think that must be one of the worst pains there is. She screamed when they came to debride her wounds, which seemed like every five minutes but really were maybe five hours. It hurt terribly; I know now. But then, I couldn’t stand noise. Any sudden noise and my movements would begin again.

            My mother and father had gone to the nurse’s station numerous times to see if they could get another room; no, the hospital was full. One evening, my dad went out and was talking about moving me and another patient overheard him. Bobby offered his private room to me. A true blessing from an angel!

            I was in that room for the remainder of my stay. Bobby stayed in touch with us for years until his death.

            As I said, I went through all kinds of tests. From brain waves, which left my long hair a knotted mess, to a spinal test. I have no idea what they were looking for in the spinal test, I only know it was extremely, extremely painful.

            Mom came home that day. The doctors assured her the test would be the next day, but they moved it up. Hazel, my aunt, was with me. Mom needed to see Dale and get back to normal for one day.

            They had me in a surgical suite with everyone masked and gloved. They placed me face down on a table and told me to hold still. (Yeah, like that was happening.) Hazel was outside, but could see me. The first needle hurt so much, I screamed and cried. Every fifteen minutes they would let Hazel in to calm me, then out she went, and I was back to screaming and hurting. Afterwards, I was supposed to lay on my stomach without moving. Again, not happening.

            Mom was going to surprise Dale, but didn’t get that far. Hazel called her hysterical and crying herself. Mom and Dad came to be with me. Hazel told mom, her sister, that she cried all night that night.

            Looking back though, I am glad mom wasn’t there. I don’ think she could have stood it. For Hazel, it was one day; for mom, it might have been the one thing that broke her. That test is one I’ll never forget.

            With all the bad, there was occasional bright spots. An intern bought me a bright green bunny rabbit! I had that rabbit for years. Thank you, Dr. Boone.

And I remember lying between my mom and my dad. Dad talking softly to soothe me. I was a daddy’s girl, after all!

 

The Big Downhill Slide

 

            I went from a pretty normal girl to someone, or something, I don’t even remember in a matter of months. Mom told me I started walking on crutches and by the end of a month, I couldn’t even manage that. I was in a wheelchair.

            Okay. I am getting ahead of myself here. Breath. And explain dystonia first.

            Dystonia is a neuromuscular disorder that can affect one or many parts of the body. It is characterized by uncontrolled movements. These movements can be very painful and cause harm to the body without your consent.

When you reach for a glass, you don’t think about it, but your body does: fingers extend, arm moves smoothly, fingers flex around the glass, arm bends back to you, muscles working together effortlessly. All that movement taking place and we are unaware of it. Wow! We were created so perfectly and beautifully until something goes wrong.

For some dystonia patients reaching for a glass is impossible. Something happens, or is missing (in my case Torsin A), in the brain so that the signals get scrambled, and we cannot control even the smallest task. Also, in my case, I do the things that will hurt me instead of helping me. Always remember the word uncontrolled. This is key to what I’m about to tell you.

I remember being at my aunt’s home and was sitting by a fireplace. Within a few minutes, I had turned the swivel chair so that I was facing the flames and the wall. I somehow got my foot on the wall and my mother had a difficult time getting me “unstuck.” I was literally between the wall and the chair and couldn’t move! Normally a person could just bend the knee and lower the leg. I couldn’t. I was stuck.

The worst of it was when I screamed, “bend me!” and Mom would use her four limbs to bend my four limbs, which took some effort. I was only a tiny thing, but my muscles were very, very strong. Then I would cry, “straighten me,” and Mom would move off me and let my limbs straighten out. And a minute later, the whole process would begin again.

            This was all within the first year of my illness.

 

First Trip to Winston

 

            To confirm we had the correct diagnosis, we were referred to a neurosurgeon in Winston-Salem. The hospital, then called Winston-Salem Baptist Hospital, was huge to my parents. It was five stories high, and I’m sure was overwhelming. (Looking at the old hospital, it is tiny compared to the hospital around it now.)

            We saw this doctor at a free clinic across the street. I remember playing there, but that is about it. Because it was a free clinic, we had to wait hours to see the doctor. I don’t recall much but that day, but I met a man who would later change my life.

            Dr. Eban Alexander was one great doctor and an even better person. He must have liked us right away too. He told us he would see us at his office next time. He tentatively confirmed we had dystonia. Remember, this is years before a gene was found, and there is nothing else to prove or disprove dystonia. All we had was uncontrolled movements, but at least we had a name, and a doctor that knew we were telling the truth. At last!

            Dr. Alexander was special. The nurses, interns, and everyone knew him and all respected him. A man of deep faith, his wife recorded the sermons he missed due to his emergency surgery, which occurred often. He later told my mother that he prayed before each operation also. And he never charged us a penny for his surgical time. He was a friend to my father and mother, and treated me like his child. There will never be another like Doctor Eban Alexander!

            You are missed, my friend!

 

First DYT1 Memory

 

            Isn’t it strange the things we do remember, and the things we don’t?

            I recall coming home from seeing a doctor at Western Carolina Center, and my parents talking excitedly in the front seat. Just a snippet of memory, but this one I know is correct.

            My brother spent a year of his life at this place. (My parents were following the advice of the doctors to even take Dale there.) I KNOW the name of his doctor, a psychiatrist, but I won’t share that information because his diagnosis was wrong. So wrong. And Dale suffered for it. This same doctor said I must be copying my brother, just as a close cousin had before me, and my brother was “copying” my father, as he had a slight limp in the same leg. Wrong! Wrong! Wrong!

            When this doctor said that, my mother came out of her chair and told him that we would see the next neurologist they had coming to Western Carolina Center. Mom said she didn’t usually talk, but she knew something was terribly mistaken with the diagnosis, and she had enough.

            Maybe a week later, we all went to see a neurologist and he examined the three of us. I don’t recall his name. I wish I did because he saved me from going to doctor to doctor as my brother and cousin had. After another week, he had an answer. It was dystonia. Dystonia was a rare disorder, and he only found it by ruling everything else out. Also, he was from Lebanon and had seen it there.

            As you can imagine, my parents were thrilled! They knew what was causing my father’s limp, my brother and cousin to use crutches, and me to walk on my toe! If they had a cause, surely there was a cure! Or at least something to help, right?

            Unfortunately, they were wrong.

 

The Start

 

            I am having a difficult time deciding where to begin. I think I will start at the beginning of my odyssey with dystonia. I don’t remember this because I had no idea anything was wrong. This was related to me by my mother.

I had just turned five when my life changed forever

            I was running a high fever that year before Christmas. We were living in what we call “the old house.” It was old, drafty, and cold. The only warm place in the house was a hall off the kitchen. I slept on a sofa in the hall. After my fever broke, I told Mom I had to use the bathroom. She uncovered me, and I walked to the bathroom. Little did I know that Mom was watching and likely thinking she saw wrong, or was dreaming, or having a nightmare most likely. You see, I walked on my left toe.

            Maybe this means nothing to you, but my mother had seen this before. Her son, now fifteen, had started walking on his left toe five years ago. He was using crutches to walk now.

            When I came back to the couch and was still walking on my left toe, I know mom was praying something like the following: Not again, please God! Let there be an explanation for it. Don’t let this happen to my little girl too. Please God!

            I was oblivious and likely chatted away, after all I was feeling better. Mom covered me, got me warm, and then she played with my toes. She was looking for anything that might explain the unexplainable. But there was nothing on my toes, not even a blister. I feel sure she continued praying that day.

            When dad came home, he likely had me walk for him and he looked at my feet for something. There wasn’t anything to find, however.

            This was the start.