James L., Atlanta, Georgia
First memory of myotonia
I was very young about 4 years old and was trying to pour milk
out of a plastic gallon into a glass. I noticed it was difficult
and wondered why my arm felt the way it did. It worried me, and
then shortly after that I was pouring milk at our dinner table
and I dropped the gallon of milk, broke the glass and spilled
milk all over the table. My father who always had a short fuse
started yelling at me. My mom told him to stop, because I was
just a little kid. Little did she know that it had nothing to do
with me being little.
I was 14 and someone from MDA came to school and talked about
muscular dystrophy. Some parts of it sounded familiar, so I went
home and told my mom I thought I had it. She got upset and
yelled at me. I can’t remember what she said, but I remember I
kept bringing it up after that. Finally, she gave in and took me
to a back doctor. I don’t know why, but someone suggested that
it may be a back problem. When I walked into the back doctor’s
office, he asked my mother to leave and then he told me to lay
down on the floor and then get up as fast as I could. I didn’t
get up very quickly. When he called my mother back inside he
told us that he couldn’t diagnose me, but he knew someone who
could. He sent us to a neurologist who did muscle biopsies on
me and everyone else in my family. Me and my three sisters were
found to have Myotonia. My mother was found to be the dominant
carrier. She has never shown any signs of Myotonia—in fact she
played high school and college tennis and volleyball. I was
later diagnosed with Myotonic muscular dystrophy, then several
years after that had a DNA test and was told I had an extremely
rare form of Myotonia that did not have a name. Finally, the
neurologist who treated me retired and two doctors who replaced
him tested my sister and said we have Thomsen’s disease.
Reactions of family
When I was younger, around 4 yrs old, I complained to my mother about muscle stiffness. She took me to our pediatrician, and he said that he couldn’t find out anything wrong. He said it was probably just an emotional problem. My father had a terrible temper, so that’s what they attributed it to. I guess they just ignored the problem until I entered grade school and started playing sports.
My father was the first person to really witness my muscle disease. On My first day of T-Ball, the head coach lined up all us players and one by one had us run the bases. Somehow I had slipped to the end of the line … I sort of knew that something was wrong. When it was my turn to run, I tried to run forward and my muscles wouldn’t move. I told the head coach, “I can’t.” He said to me, “what do you mean you can’t, just do it?” My father was an Assistant coach, and he was standing behind the coach. When I looked back at him, he had a look on his face that was part fear, part disgust, part embarrassment and part confusion.
The next four years were terrible. My parents were both athletes, and they spoke very little about what was going on, but they said everything with their eyes and behavior. I can’t really sort out in my mind what they thought or what they said, because I kind of pushed the whole time frame out of my mind. I know there were months of silence that would pass without them saying anything and then every once in a while they would both accuse me of stuff. I can’t really remember what they said exactly, because I wouldn’t let my mind remember it. I know I asked my mom a lot of questions about what the Pediatrician had said, and she would get angry at me and just say, “I don’t know what is wrong, maybe you’re just doing it to get attention.” I know my father was very hard on me when I couldn’t lift something or dropped something or didn’t move fast enough for him. He wasn’t physically abusive that often, although he would slap us in the face from time to time, but he would yell like a mad man and would lose his temper for no good reason at all. He would insult us and cuss at us. A few times he threatened to kill me.
As a result it seemed like all I focused on was not letting anyone see me walk or move “stiff.” I was terrified of anyone finding out, because I was afraid of what my father would do to me. I was so worried about it that I was afraid of strangers—people who didn’t even know my parents—seeing me walk stiff; I would imagine that those strangers knew my parents and my parents had told them if they catch me walking stiff then they should hurt me or they would tell my parents and my parents would hurt me, or both. I always imagined that people were always kind of grinning at me with these evil menacing smiles, just waiting for me to walk stiff, just waiting to hurt me or mock me.
So 24/7 whether at school, on the bus, at relatives, in public or over my friend’s houses I would constantly perform isometric exercises to keep my muscles in a loosened state. I was constantly in a state of panic either worried about a situation that I was currently in or something that I knew or imagined might happen next. Stairs were a curse that I used to worry about constantly. In fact that I would plan for what felt like hours of how I was going to get up a flight of stairs without anyone seeing me. I was terrified to go anywhere, but something inside me kept pushing me to go places.
The only time I could relax was when I was running – in a complete state of looseness. I knew that wouldn’t last long, because of the soreness and tiredness that was too follow. But I would push myself way past my limits of what my body could take. I would be loose as long as I could. I wanted “it” to be gone so much that I believed if I just kept going, kept standing, if I did so many push-ups, if I ran as fast as I could for as far as I could run then “it” would go away—almost as if I would break free of “it.” As a result I constantly ran scenarios through my mind of how I could improve myself—what I could do to fix my problem. My mother told me to pray to God and if I believed enough then God would heal me. God didn’t so I eventually grew to hate God and became an atheist.
My father said so many different things. When I played T-Ball he said I ran the wrong way, because I didn’t make a fist, instead I ran with my hands wide open like a sprinter. In my teens he said that I was “doing this to hurt him.” He just didn’t believe that I actually had something wrong with me. He would say, “but you run fine sometimes, I see you doing it, but then sometimes you do this … its like your trying to—I don’t know what.” And that was the problem—everyone told me a million different reasons why I was moving the way I move, but he never had a solution for me or could tell me why I was doing what I was doing—I was just doing it wrong and doing it to hurt him. I knew that was crazy buy had no means to combat it.
When I was 10 my parents sent me to a psychiatrist. She diagnosed me as having a psychosomatic illness. She said my anger and other intense emotions were my problem. I thought great. So now not only was I doing this for all of these other reasons (listed above) but I was also doing this because I was angry. So I did what any normal child would do—I tried to get rid of my anger. I tried to push it down and not feel anything. I promised myself that no one would see any of my emotions, ever-I would become like a robot, completely objective and devoid of bad emotions. In the meantime my parents sent me to a social worker who I visited for the next two years. He kept telling me, that he would help me get rid of my stiff legs, but as you can guess he was wrong. At the end of two years he said that he had seen me as much was healthy for a boy my age and that my family should look into physical reasons for the disability. It was a difficult to hear that he couldn’t help me, but in the end this experience was my saving grace.
I don’t know what was wrong with medical science at that time,
but as you read above it wasn’t until two years later, when I
pushed my mother to look into the muscular dystrophy, that
anything changed in my family.
So at 14 I thought my problems would come to an end. I thought I would get an apology but instead I got pity. For the next 6 years it seemed like all I heard was “so, how are your legs?” which was followed with, “well all we can hope for is that they find a cure.”
When I was 19 I dropped out of Chemical Engineering and delivered pizza for 6 months. Then I went back to the same therapist I had seen as a boy. This was my saving grace. He helped me to stand up to my family, especially my father. I reestablished my faith and when I was 22 I began the process of allowing people to see me walk. After all those years of being terrified of people catching me walk stiff, it became very difficult for me to go on with life hiding my Myotonia.
Since I feared physical punishment or even death if someone saw me moving how I move, I had to take extreme measures to change my mentality. First I had to confront my fears. So every time I felt like someone was staring at me and may be watching me, I stared back at them. Even if I was sitting down, I forced myself to look people in the eye and I made myself look at them until they looked away. If they looked at me with any sort of judgment or if they had an unhappy look on their face, I forced myself to glare back or even snarl at them. Since I was so worried that these people were going to kill me or really hurt me, this was initially unbearable. I knew my behavior was odd and extreme, but I knew no other way to get past the immense fear I had.
During this same time, I was delivering pizza’s. Now pizza delivery was about the most stressful job I ever could have had because not only did I have to climb up a flight of steps with a pizza bag in one hand and sometimes a 2liter of Coke in the other hand, but the costumers wanted it ASAP and they would stand at their door and watch me walk up the steps. Often they were rude and impatient, and many people would glare at me as I slowly took my time walking up the steps.
I can remember where I was exactly the first time I walked in front of customer without first trying to “warm up” my muscles. I had worked my way up to it for several months, and finally one day when I driving towards a 5-way intersection that I had come to so many times before, I decided that’s it. “I’m not doing this anymore!” This is ridiculous.” I don’t care what these people do to me. I don’t care if they tell my father and he kills me or they kill me ( Even though my father had known for 8 years now that I had a muscle disease, the old fears were so engrained in me that I was still terrified that my father or some stranger would hurt me) I am not going to hide the way I move any more. So at that moment I stopped pushing on the floorboards of my car. I stopped tensing up my arms. I stopped squeezing the muscles in my belly and chest, and I made myself just sit and drive.
And my heart rate went up, and my hands started to sweat, and my vision began to blur and I fell into a panic. I don’t remember who was the first customer I walked in front of without any pre warm up activities, but I do remember where I was when I decided to not hide anymore. And once I stopped hiding, I became terrified of ever doing it again. In fact, whenever I would deliver a pizza and someone would glare at me or do anything threatening at all that may make my mind want to start hiding my movements again, I would get very afraid and force myself to confront that person, or else return to that dark scary hole I had climbed out of.
In the beginning I would just glare at customers when I pulled into their driveway if they were standing at the door. If they continued to stand there and watch I would mouth expletives to myself as I got out of the car and as I walked up the steps. If they continued to watch I would glare at them with each step and if they asked me what was wrong I would bark, “I have a muscle disease.” Sometimes when I would get up to the door it felt like some people would just glare at me. I know sometimes I didn’t look at them but just imagined they were glaring at me, but other times I would look at them and they were just glaring at me with confusion and judgment, so I would just look back at them with as much anger and resentment as I could muster.
Since I was afraid these people might hurt me the only way I could force myself to stand up to their stares was to tell myself that no matter what they did to me, I would fight them all the way. So my looks had the intention in them of “how far are you willing to take this, I will fight you until you have to kill me, but I will not quite fighting you until then.” I knew this thought process was extreme and even crazy, but as I began to learn more and more about psychology, I realized I had to do some extreme behavior modification or the events of my childhood would crush me forever.
Over time, I began to see the reality of how people really are and who and what you really have to fear. I often make a joke to relax those around me when they find out about my muscle disease, and those who are ignorant of the way I move I see them just as that, and I will let them know it if they are particularly insulting.
In 2000 I went to grad school for film at the University of New Orleans. In 2004 I started working for my parents, and we develop and build single family homes for income qualified households using Federal Tax Credits which we sell to investors to fund the construction of the homes. My relationship with my parents is pretty good. I started confronting them about the things that happened in my childhood when I was 19 and now I am 32. We don’t talk about the past too much anymore, but through our talks they really changed for the better—especially my father. I also changed for the better. I’ve reached a point where I have forgiven them, and as a result we have a strong family.
I live in Atlanta with my girlfriend who is a theatre director and one day we hope to start a film/theatre company. The experiences in my life have given me a unique and deep well from which I write stories and direct film. MC has made me strong, because the greatest strength in life comes from dealing with conflict. It has also given me a unique perspective and a compassionate heart.
Reading people’s experiences on this site has been very inspiring, and I encourage everyone to tell their story—whatever parts they are comfortable with. Perhaps we can find a common thread that weaves through all of our lives and possibly shoot a documentary at some point that shows our unique experience.