My name is Carl Stewart. I am 63 years of age living in Framingham, Massachusetts USA. Here is my life story as it relates to having Centronuclear Myopathy.
I was the third of four children born to a poor post-world-war II family in southern Kentucky. My father was an untreated alcoholic who made bad decisions regularly. My mother was severely impaired from her struggle of living with my father for 25 years. She was fragile, fearful, and living without hope. When I was six, and my little brother was four, our father left the family to pursue a relationship with another woman. That left me in charge of a great amount of the emotional health of the family. I fought the fear with wilfulness. I thought that I would be in charge of my destiny. Although I was quite wrong in that thinking, I did go quite a great distance with it.I did well in grammar school with the learning, but not the socializing. I was outside the group, a loner, mainly because I believed that I was in charge and that I would make it through whatever came my way. My physical limitations were often obvious but I was not discouraged and pushed on with what I could do while blotting out completely as possible what I could not do.
My older brother was fifteen years older and I just did not get to have much of a relationship with him. I remember when he got married and left for the Korean War in the army. He had our disease but was never diagnosed. The army took care of him and sent him away from the war for duty. He came home and he and his wife had two children. The first had Fredric’s Ataxia and the second had no muscular dystrophy at all. My brother Harold struggled for his entire life to be ‘normal’. He resisted the disability, denied it, and struggled hard until about five years before he died. He then did get a manual wheelchair and he did get public assistance with transportation. He developed reformatory problems and after two years in a nursing home, he died at the age of 63.
My first awareness of my physical limitations was at age six. I was at a two-room elementary school. Some boys were playing basketball in the playground area. I certainly was not going to join them so I watched. When they were finished playing they left the ball on the ground. I went to the ball and picked it up and attempted to shoot it toward the basket the way they had done. The ball didn’t go very far up and came back quickly to smash me in the face. I was alone, but I sure had received a serious message, and I was not sharing that with anyone.
I looked like a normal boy, although I was quite slim. I suffered discrimination in playground sports because I could not perform like the other boys could. I played anyway in the unorganized opportunities. Not having a father, and my mother being emotionally not present, I had to navigate that part of my life alone. Avoiding ‘Little League’ was important to me because I believed that if I participated at that level, I would be found out to be too weak to do the thing, and I would be humiliated. I always felt insecure while walking, or running, or doing anything more than sitting. I did not stop and sit though. I continued to try to keep up. I often fell down and skinned my knees or shins and this would be while just walking on a sidewalk or a road. It must have been obvious to my mates that I was weak but they mostly just let it be. Once in high school an athletic girl challenged me to a running race on a sidewalk. I had to do it. She won easily, lots laughed, and I tried my best to just let it go.
I was always wanting to be popular as I got older and attended high school. I changed schools after freshman year so that I could be at the ‘City’ school and not the ‘County’ school. I knew it was ‘more cool’ to be at the city school. After I got there I had to attend ‘physical education classes’ which threatened me severely. I would not back down though and I always went to the class and did what I could. We had an ex-marine football coach who was physical education teacher, and the football team coach. He demanded discipline and I could give him that. No matter how difficult the exercises were, I attempted to do them with all of the strength that I could find.
When the position became available, I asked the coach if I could have the job of ‘manager’ for the football team and he gave it to me. Manager was a misnomer for laundry / custodian / waterboy person and it was a good job for me.
The football team in high school in southeastern Kentucky was the center of the popular limelight. I had found a way to get into the fringe of that limelight and I was pleased. I made my way through the rest of high school by being associated with the football team and I had good friends who were athletes. I graduated from high school and all of my friends went on to college. I was afraid to go to college because of the physical education that awaited me there. I could manage my situation better where I was already.
The Vietnam War was heating up and I was a prime candidate to be drafted into it. My friends were coming home from college having dropped out for various reasons. We began to make plans to deal with the military situation.
I was taken for a day to the army base in nearby Tennessee for testing. I thought that at this time it would be found out that I was physically deficient and that this would be the end of my threat. Not! They tested me, and passed me to be available for the draft into the military. It was because of how I looked; that is not fat. They assumed that any physical weakness they saw in me must mean that I was faking so that perhaps I would not have to go to war.
A good friend and I decided to join the US Coast Guard Military service and guard the coast here in our country. We were misinformed about the ‘our coast’ part, but the plan to be in the military and not serve in the war worked well. I cheated in every way I could to get through basic training. It worked but at great emotional expense. I was always afraid that I would be singled out, as a boy / man who could not do the physical things that one is supposed be able to do now. I continued to cheat and avoid exposure and I got through the service for four years. I got out and pursued a mainstream life without being exposed as the pretender that I was.
At age 39 I was close to marrying my second wife and she wanted to have a child with me. I decided to get some genetic counseling. I was examined generally and then sent for a muscle biopsy. A leading Muscular Dystrophy doctor saw me and said that I had ‘Myotubular Myopathy’. He added that if I would father children that the chance of the child inheriting some neuromuscular disorder was very high. We got married and chose not to get pregnant.
I went on now halfway accepting my disease and still halfway hiding. My progression was slow and at age 45 I accepted using a cane on some days. The progression was more debilitating three years later and I got a walker to use for getting around. Four years after that I was prescribed my first power wheelchair to help me to conserve my daily energy and still get through a working day at the office. The transition from the walker to the chair was huge. Some of it was physical, some were material changes, and some were mental changes. I had to humble myself again and accept being a handicapped person.
That first wheelchair was tremendously liberating! I had not admitted how limited my life had become with having only the walker to go places. I deliberately limited my movements to preserve my energy and so had shrunken my life significantly. With the chair, I went places in the hospital where I work. I went fast and efficiently and I went! This is the best I have ever had it really because there are no more secrets. People see me and they know that I have a disability. I get to go where I want to go, for the most part. Where I cannot go I accept that I don’t go there. I concentrate on doing what I can to stay healthy in mind, body, and spirit.
In 2005 I was introduced to the Beggs Laboratory team at Children’s Hospital. I got re-examined and learned that I really have Centronuculear Myopathy and that the Lab has identified the genes which cause the disorder. I have become active with the local chapter of Muscular Dystrophy Association and with MTM – CNM Family Conference folks. I am trying to be more ‘out’ with my disorder and to just be more social with it all. This is liberating and stressful at the same time, but I am out now.
I am 63 years old and just doing the best that I can to manage my life with the various diagnoses that I have. I take my medicines, keep up with physical exercise, and follow my doctors’ orders. I really enjoy life as much as I can by using meditation, careful diet, get outdoors as often as possible. I watch television far more than I read books unfortunately. Overall I am reasonably healthy and I want to stay that way for as long as I can.