Just A Thought

            I’ve been working on my book a lot lately.  Trying to, anyway, in between actually working and attempting a social life.  I’ve been rummaging through memories in my head.  Remembering moments I have forgotten and missed, and some I have forgotten and longed never to encounter again.  But if I’m going to show people my life, I have to show them all of the most important parts that have helped make me who I am today.

It’s unfortunate to have experienced certain levels of hurt.  To know you were once in a place so dark, no light seemed possible.  There was a time when I couldn’t understand why I was given this life, even with all the beauty around me.  I couldn’t see the changes I was making being who I was, because I was too consumed with fighting it. But I am a beautiful person with a purpose or two in this world, and while I would like to forget these moments, I know they would be better remembered to help others through their own.

Writing is a bit of a struggle sometimes.  One minute I’m hitting roadblocks around every corner, trying to find the right words to capture my readers; the next, I feel like I don’t have enough time to get a thought written down before it escapes me.  Or I’ll be right in the middle of one thought, when I have to write myself a note on another before I forget it.  It’s a huge undertaking, to write your life out for the world to see.  But I’m learning a lot about myself in the process.  And if I can help at least one person to accept themself and be proud of who they are, then it’s all worth it.

Spring Cleaning

            As an adult member of my household, I willingly contribute funds to pay the monthly bills.  But I want to contribute on a more physical level as well.  I want to do dishes and mop the kitchen; dust and vacuum the living room; load and unload my laundry.  As an independent person, I want to tackle as many chores on my own as I can.  Or at least attempt them.

Today I had the opportunity to try my hand at some vacuuming.  I actually managed to accomplish a good deal of it on my own.  Every now and then the cord would get stuck to my tires and I’d pull the plug out.  This would prompt my mother to unwind me and plug the vacuum up again.  Then off I went once more.  The whole ordeal took me about 30-45 minutes, and I strained my left hand so much it swelled slightly.  But I did it my way and I got it done.  I was high on a sense of personal physical achievement I haven’t felt in a long time.

I was intent on doing more, which led me to ask for the broom with the adjustable handle.  I can be a bit of a neat freak when I get on a cleaning spree, and we had some cobwebs above the front door.  I wanted to attempt to reach them myself.  But my attempts were cut short.  “The broom is too heavy” I was told.  “You’ll knock everything down”.  Would I really?  I’ll never know, because I was never given the chance to try.  I was heart broken and truly hurt by my mother’s inability to let me try.  I probably would have failed.  The broom is extremely heavy for me.  But I wanted the option to fail.

I can certainly understand my mother’s caution.  A heavy broom in the hands of someone who can barely lift the weight of her own arm, trying to swipe away cobwebs right next to a stack of boxes and a side table would probably make anyone with common sense think twice.  But the moment of vacuum triumph followed by the averted dusting disaster got me thinking.  I may find that I can’t dust the cobwebs or load and unload laundry.  As a person with Muscular Dystrophy, there are not many chores I find myself physically able to do, and I’m ok with that.  What I’m not ok with is the inability to make the choice to try.

Rolling in the Fast Lane (With a Few Fender Benders)

            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!