Living with Muscular Dystrophy
Takes Determination
by Peter Tacheny
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.
