This was an assignment for my ASL class: I was suppose to write an essay about a handicap in my life....and this is the finished product.
Bravery
Despite the normal appearances of
life, things aren't always what they seem. Manhattan looks clean and
beautiful until you walk the streets. Poison ivy is normal and
harmless until it touches your skin. That's probably the most
appropriate way to describe my crazy life. My “handicap” is more
obvious than others, but at the same time you might not notice it
right away. I was four when I was diagnosed with a form of Muscular
Dystrophy called Charcot Marie Tooth disease. A neurological disorder
that wears away the coating of my nerves and weakens my muscles in my
hands and legs.
Growing up I was poked and prodded,
had blood taken and nerve testings. I had physical therapy and
countless different types of leg braces and boots that helped keep my
feet straight and helped me walk. After a while the doctor
appointments stopped, but the therapy sessions kept going and the
braces continued to change over time and improved. And even though
those trips to the doctor ended I was still self conscious about my
legs and by how much they held me back from doing what I love to do.
At first I didn't realize how much my
life had to revolve around my legs, but when I was around twelve or
thirteen that's when I starts to see how my life needed to be. That
was when I started to get weaker and the pain came on more intense
and more often. I started having to take medicine that was suppose to
prevent my legs from hurting, I had to start making arrangements for
my wheelchair when we went places, and I started to miss more school
causing me to work twice as hard as anybody else to keep up with the
work. Worst of all my disability started to take away my passion that
I've had for so many years: swimming. It had started to affect the
way that I am able to swim and when I'll be able to swim. If the
water is too cold my nerves ache and I can't function in the water as
well as the other competition next to me. If my legs are shaking I
can't dive off the starting block properly and I loose speed.
But my active life wasn't the only
thing that really began to change over the last couple years. The way
I see myself has changed. Being in a wheelchair comes with the stigma
of being “retarded” or “ugly”. Being beautiful and being in a
wheelchair aren't usually thought of in the same sentence and rarely
is a person in a wheelchair thought of being able to contribute to
society. Despite people telling me “I'm beautiful and have a great
gift” and “opportunity to share my story with people”, I
struggle with accepting who I am, because I long to feel accepted by
the other people around me. I'm a people pleaser. But I can't change
the fact that I walk more clumsily and awkwardly, I can't change the
way I have to dress to avoid my legs getting cold and clenching up,
and I can't change the way my leg braces look. Add those things with
the added pressure of being beautiful in society's eyes and it's
really a battle I can't win.
This year I'm still struggling with
how I look and I know that I'll always struggle finding confidence in
my wheelchair and when I use my leg braces. I will always have my
disability and as much as I wish I could be like Forrest Gump and run
right out of my leg braces, that will never happen. One of my
favorite quotes is from a woman in a wheelchair, “We may be
confined in our wheelchairs, but we are not defined by them.” There
are people in my life, my family and friends who push me to be my
best and not to sit around a grieve for the things I don't have.
There are people in my life, paralympic athletes like Mallory
Weggemann a swimmer, who gives me inspiration and a goal to reach
each day. Then there is my God who is my courage and my strength, and
without whom I don't think I would still be here, because He is the
one who gives me a hope. He is the reason I can sleep in peace and
keep going because I know I have a future.
So everyday I get up, I get dressed,
live my life to my fullest. I go to swim practice and embrace the way
I feel in the water. I am weightless and free, I am not confined in
my chair or by my leg braces. I go to school and do my work. I have
plans for college and I know what I want to do when I leave college.
I want to fall in love and get married. And I know I want a family,
despite the statistics and the people who don't think I should have
children.
Mallory Weggemann summed up how I feel
when she spoke at a conference and this is the perfect way to say
what we need to hear. “For nearly six years I have been classified
as an individual with a 'physical disability'. However, I feel that
everybody has a disability of some sort. Mine is evident...but we all
have something that holds us back. Whether that is physical, mental,
emotional, spiritual, or financial. And the list goes on. But where I
believe bravery steps in is when we choose, regardless of our
disability and regardless of circumstance, that we are going to rise
above and we are going to push forward. We are going to chase our
dreams and we are not going to let it stop us.”
We all have something that hinders us.
Growing up I was surrounded with people who had mental handicaps or
people who, like me, had physical handicaps. But I was and still am
surrounded by people who have different types of handicaps. They
aren't as obvious as mine, but they are there. Regardless of where we
have been we all have something that we need to overcome in our life.
These “disabilities” and these “handicaps” are what make us
who we are. They make us brave.
Don't let your kids grow ignorant.
Talk to me, I'm awkward, but I love to meet people.
Remember: CMT is progressive, sometimes I'm in my chair and other times I'm not.
I want kids, sure they might have CMT, but they will be perfect. 
And yes....sometimes I wish I didn't have CMT.
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