Living with Muscular Dystrophy Takes Determination

I was diagnosed with Duchenne muscular dystrophy (MD) when I was five years old. My first memory of that time […]

I was diagnosed with Duchenne muscular dystrophy (MD) when I was five years old. My first memory of that time was of the sadness that my family seemed to have in finding out this news. I had my first surgery to help me walk better when I was eight years old. It was from then on that everyone said that I was a person with a lot of determination. The first surgery was to straighten my feet. And from then on I also wore leg braces. Doctors told my family this surgery would help me walk for maybe six months to a year. Well, I showed them—I continued to walk until I was 10 years old.

There were a lot of bumps along the way. I remember one time when I fell. My younger brother, who has quite a sense of humor, jokingly said, “So how was your trip?” From then on we did try to add humor to dealing with the MD. At age 10, I started using an electric wheelchair permanently. Regardless of the wheelchair, I tried to go along with the saying, “Boys will be boys.” One day some of my friends and I decided to test strength of machine versus boys. So as I had my wheelchair in reverse, they were pushing forward to see who was stronger. Well I am not sure who won, but we made burn marks on the classroom carpet, and we all had to clean the classroom for a week. One thing my mom made sure of — is that if I got in trouble, I would be treated the same as all the other students.

Each year as a new school year began, my mom would come into my classroom to tell the teachers and students some information about my muscular dystrophy. I think people seem to accept things better when they know what is wrong with you. However, that wasn’t always true. When I started to fall more, there were kids who would still push me down because they thought it was funny watching me struggle to get up. But for the most part, teachers and students just treated me the same as everyone else.

My determination helped me along physically and mentally. I always prided myself in doing my best. I could never figure out why kids who had no physical disabilities could go through life just not caring or doing their best. I always gave my school work 100%. My determination paid off in the end. I graduated in the top 10% of my class.

Having a good attitude and lots of determination helped me get where I am today. That does not mean there were not some struggles and disappointments along the way. I really wanted to go to college. I even got accepted to computer school. By the time it was time to start school, I realized I was getting a lot weaker. I figured by the time I finished college, my arms would be too weak to work at a full-time job. So I did the next best thing, I bought a computer. With what I learned in high school and from just using the computer everyday, I learned to make cards and photo DVD’s. So that is what I am doing now. This way, depending on how I feel, I can work my own hours.

Probably one of the hardest things about having muscular dystrophy is that everything takes a lot of additional planning. In just going to a movie, we always try to arrive early so we can be sure to get a spot with handicap seating. Going on vacation or even just trips to the mall can take planning. Whenever my family makes plans for a vacation, we call and double check to see that the accommodations are accessible. Everything takes extra time. It takes time to get in the van, time to find a place to park, and then time to get unloaded from the van. In the winter it is rough because sometimes if we have to unload the wheelchair on a sidewalk, the sidewalk might not be shoveled enough to get my lift open.

We all should be considerate of others no matter what their ability or disability because we never know when we may be sitting in that wheelchair. When I was in school, there were times when other parents would park in the handicap spot without a handicap parking permit. When this happened, my mom would go and ask the other drivers if they could move because she needed to use the spot. Sometimes, they would just say, “So what.” But most of the time, people have been nice to me. I actually like it when they come and ask what is wrong with me. I would rather people talk to me instead of staring at me.

The scariest part of having Duchenne muscular dystrophy is that many of the people I have known who have MD have died even before reaching my age. I am 20 years old now, and recently I have had set backs with my health. For people with my disease, getting a simple cold could actually end their lives. It is because of this fact that I try to make the best of each day. Even when I am in pain or just tired out, I challenge myself to accomplish something that day. You can usually find me in my office, drawing or making cards, working on a photo project for someone else, or just surfing the web on the computer. In conclusion, I feel that although living with MD has had its ups and downs, I have always managed to keep my spirits up.

 

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