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|As told by Shana Martin...
Huntingtons Disease has been a major part of my life, all of my life.
When I was in the eighth grade, I had to write an essay about my mother. It was nice,
printed on some official looking paper. I gave it to her afterwards and it is still
hanging in her room. A few years ago, since Mom couldnt really talk, she would get
mad and throw thingsincluding drinks. One day, she threw a drink and it splattered
on the framed print. Now when I show it to people, they think that others have cried on it
when it was read because the splatters look like tears running down the page.
This is what I the essay says. "I never really knew you before you got
sick, but I had heard a lot about you. You were a straight A student, you were involved in
sports, and you had a lot of friends. You also were very beautiful and nice. While doing
one of your sports, you met my dad. You were soon married, and a few years later, I was
born. When I was about 6 years old, you started to look and act a little different. We
took you to the Mayo Clinic. We soon found out that you had a disease called Huntington's
Disease. We learned that you would get sick and sicker until we could no longer take care
of you, and that's what happened. In January, you moved into a nursing home. Every day I
pray for a cure for this terrible disease because I miss you very much. Please don't ever
forget, no matter how you act, or how you look, you will always be my mother and I will
always love you."
I have never really known my mother except for faint memories of
when I was an infant. I was in kindergarten when she was diagnosed with Huntingtons
Disease. She had never heard of the disease that was to change our lives, because she was
adopted as a baby. It was hard growing up; I was confused as to why I couldn't be like
other kids, and do all of this neat stuff with my mother. I didn't understand why I was
chosen to deal with this.
As her disease progressed, her physical signs became obvious; when people saw me with her,
I had to suffer their ridicule. School kids can be very cruel, and I got the worst of it.
Children made fun of me every day because I had a retarded, psycho, or freaky mother.
Every day I went home and cried. Nobody understood what my mom had and what I was going
through. They never wanted to meet my family because they were afraid they would get what
my mom had. They would ask me, "Why did your dad marry that thing, and how did she
have you?" That hurt a lot. I was embarrassed to be around my mother. To this day, I
am unable to forgive those kids because they affected the way I treated my mother in her
Childhood was hard for me since taking care of my mom was a full
time job. At first, things weren't that bad. She would just throw tantrums and get very
mad for no reason at all. I guess at that stage as a small child, the scariest thing was
that I knew that I might not have a very long life.
As the disease process continued, it got to the point where we
couldn't leave her at home alone and I was forced to mature very quickly. I didn't have
time to take care of baby dolls like my friends did. Instead, I was in a true
"mother" position, taking, care of my mom. She was constantly losing her balance
and falling. Waking up at night, cleaning the blood out of the carpet and accompanying her
to the hospital became a weekly routine. Our family had many hard times putting up with
each other. My mom was still able to speak, but some of the things she said were cruel
because she didn't really understand what was going on. This would frustrate my dad and I
and make us mad at her, but in reality, I now know we were really angry at the disease. It
was also hard for me because I didn't have a mother to be my confidante as most of my
friends did. I think a mother is the most important part of a little girl's life. All I
remember growing up with was the knowledge that "Mommy is very sick."
Back then, gymnastics was the focus of my life. As a kid, no matter what problem I had, I
would always feel better at the gym. Those kids didn't make fun of me and I was able to do
something that I loved, and at which I excelled. I could be having the worst day of my
life, but the second I got into the gym, all of my focus went to gymnastics and my life
seemed to be perfect again.
Besides the pain of watching my mom get worse, I couldn't see my friends as much as I
wanted. When everyone else was doing things on the weekend, I had to stay home and take
care of her. Finally, when we could no longer even leave the house for fear she would hurt
herself, we decided to put her into a nursing home. I was quite happy about this; that
meant I could finally go out on the weekends and do fun things without having to feel
guilty and worry. But that feeling soon changed. Life was different without her in the
house; things were scary. It was then that I realized how much I really loved my mom, and
how hard it was not to have her around. Sure, she was only a half hour away, but it wasn't
the same. She wasn't living in the house anymore. The process was so painful and my dad
and I both were both depressed; everything in our house reminded us of her and how she
used to be. It was sad knowing that she was in a home where she didn't know anybody.
My mom has now been in the home for about three years and she is beginning to adjust. We
take her out to eat every week and try to spend some quality time with her. She is at the
stage where she can no longer communicate, walk or feed herself. I only wish I could put
into words how sad it is seeing this happen to a loved one, especially my own mother.
By the time my mom went into the home, I had many other supportive friends who had matured
to the point where they knew that the teasing was wrong. I was focused on gymnastics and
logrolling by then and that helped immensely. After a few months, things began to feel a
little more normal around the house. This is when I began to discover myself. I was
starting high school, and I knew that I needed to start finding some true direction in my
I took a health class and realized how interested I was in nutrition and sports. I began
focusing much of my time on working out, not only in gymnastics and logrolling, but also
cross training, like running and lifting weights.
The emotional and physical strain on me has been tough and is complicated to explain. But
even though I've gone through all of this, I have still somehow managed to become a fairly
normal teenager. I am a good student and I get almost all A's in school. I get that from
my mother since she was a wonderful student.
I am seventeen years old and a senior in high school and I have a lot going for me. I am
currently involved in gymnastics, logrolling, pole vaulting, karate, body building, and
running. In each one of these things I have a chance to succeed, and that keeps up the
excitement in my life. I have a chance at winning at the state uneven bars champion in
gymnastics. This summer I became the logrolling world championship in the semi-pro
division and I will now move up, with chances to excel in the professional division. I
have also been offered the opportunity to perform in lumberjack shows all over the United
States, Canada, and Australia. I will be going to Diamond Nationals in Karate this
September and competing in the Gold Belt division. With pole vaulting, I not only have a
great chance at a full scholarship to the University of Wisconsin in Madison, but there is
also a chance I will qualify for the Olympics. I am currently working on a video with my
trainer to submit to different fitness modeling agencies. One agent said that I have an
excellent chance of being a model for muscle and fitness magazines. I am also currently
one of the top sprinters in the city. These are all the opportunities I have opened up for
myself just by dedicating my time to the things I do love to do.
Yes, I know that my mother is dying, and I know that I might only
have a few years left of "quality life" because I am at risk. These facts are
always in the back of my mind, but moping around and trying to get people to feel sorry
for me is not going to change reality. Instead, I focus my mind on the things that I love.
I'm not saying that I don't ever think about my mother, I think about her all the time and
love her more than anything. But I keep my mind off my problems by keeping busy.
Some people rely on other things, such as drugs and drinking, to keep their minds off
their problems. I suppose that is one way to deal with a tough life, but in the process,
they are also hurting their bodies. I am vehemently opposed to using alcohol and other
drugs. I couldn't see myself destroying my body and my future with some illegal substance,
not even for a little party over the weekend. There are much safer ways to have fun. I
always stay busy, and though I admit that sometimes it can all get a bit stressful at
times, it is much better than sitting at home thinking about my problems. I would
recommend this to anybody, not just people with HD in their lives, to go out and get
involved. You should have very little time where you are sitting around doing nothing and
being bored. It not only keeps you from dwelling on your problems, but doing things that
you love can help you in many other ways too. Everybody has problems, some worse than
others. Of course, I know that even if I blocked them out of my mind they would still
exist. But I also can't allow those problems to ruin my life either.
The sad thing is, there is no cure for this disease. Yet. I know
scientists around the world are trying to find the cure, but I no one knows when this will
happen. I have a fifty percent chance of having Huntingtons Disease so I may only
have a few more years of a "normal" life. At this point, everyone is talking
about their futures and what plans they have. I just keep wondering, "Will I have a
future?" I want to get married and have a family more than anything. What I don't
want is have my children go through what I have experienced, and I don't want to pass this
horrible disease on any further.
Another issue I must face is getting tested. Because of the discovery of the gene, at age
eighteen I will legally be able to get tested. The decision of whether to test or not is
one that I think about often; it will determine the rest of my life. If I get tested and
test positive, I will at least know to do the things in life that I have always wanted to
do. If I test negative, that will be the biggest relief anyone could ever imagine. But if
I do test positive, I really have no clue how I would handle it. Yet if I don't get
tested, I live my life wondering... "Will it happen?" It is a very hard decision
and, for now, I don't know what I will do.
Growing up with only my dad has not been easy either. I have no mom to talk to about guys
and basic "girl" things. But I really do think that my dad and I have handled
our situation to the best of our abilities. We have a wonderful relationship and we have
been a support to each other. Through all of this, my dad has never stopped showing how
much he loves me. I have learned many valuable lessons. I have learned to live as if each
day is my last and that it is precious. We always need to show people that we love them
because we never know when it might be too late. Most of all, I pray for a cure.
Used with permission; Faces of Huntington's by Carmen
© 1998 Essence PublishingAll rights reserved.