I was born
with Limb Girdle Muscular Dystrophy. Diagnosed at age 7, I hadn’t yet realized
what different was or how it applied to my world. I caught on fast. As a child,
I spent a lot of time struggling against my disability, trying to force my body
to fit a mold it wasn’t meant for. In high school, as I explored the social
venues and found my place in the adolescent hierarchy, others praised me for my
perseverance and pushing the boundaries of what “people like me” could do. I
was just having fun. Just trying to have the best high school experience I
could. Looking back now, I know what I did was so much more than participate in
the social scene of the teenage wasteland. I changed the perception of what
people with disabilities could do and become. And in changing this perception,
I changed lives.
For the
last year, I have had the pleasure of carrying the title Ms. Wheelchair Tennessee 2012. And what an amazing year that has
been. From the children I read to and played with, to the politicians I met,
each event I attended allowed me to reach out to others. The greatest moments
came when I could speak out about who people with disabilities are: proud,
capable individuals, seeking nothing more or less than to be given an equal
playing field. I thought I was the perfect role model. Rolling in the fast lane
to changing the world. Taking what millions of people with disabilities who
came before me had accomplished and fighting for more. Fighting for better.
Somewhere along the way, though, I forgot I was human. And then the fender
bender happened.
Muscular
Dystrophy is a degenerative disease involving muscle weakness and loss of
muscle tissue, increasing with time. I lose function of different movements
every so many years. Sometimes I don’t even notice until months after it’s
started. That’s how gradual it can be. With this loss of function naturally
comes mental, emotional, and physical adaptations and acceptance. But as I grew
into an advocate and role model for children and other adults with
disabilities, I pushed away the emotional aspect. I had this idea that I had to
be the ultimate person with a disability: completely accepting of every aspect
of life and disability all the time. I didn’t allow myself to mourn the parts
of me that changed or abilities I lost. And on the rare occasion I did, I felt
ashamed of feeling so crippled. I love my life, so why did I feel so incapable?
In speaking
with a friend and fellow member of the Ms. Wheelchair family, I was reminded
that I am first and foremost a human being. I love. I hate. I laugh. I cry. In
short, I feel. We all do. We all have loss in our lives, and we have every
right to mourn that loss, whatever it may be. We all have a right to our
emotional moments. I was reminded that the best role models are those that are
truly transparent. My disability, my abilities, my flaws and talents, all these
and so much more describe and help to define who I am. And what better way to
show people the success of people with disabilities that to open up. I have bad
days. I have days where I think, for just a minute, that if I had the chance to
walk I’d take it; days where I hate the hassles and planning I have to go
through just to get ready for my bus in the morning. And if I don’t share this
with others, then what kind of role model am I really? Who would benefit from the
lessons I’ve learned and the stories I have to share?
I hope when you read these posts
you’re able to relate to something I say. Mostly, I hope they touch you… change
you… inspire you... empower you to embrace yourself for who you are, without
limitations. Because at the end of the day, the most important thing is that
you love yourself. Enjoy!
No comments:
Post a Comment