Sometimes it's hard to be me.
I spend a lot of my time watching models strike poses at runway shows and photo shoots. It's exciting to see these young ladies perfect their strut and play to the cameras. Most of them are now friends of mine, as are the designers that create the pieces that float down the runways or end up on the pages of magazines.
It's hard work, and they deserve a lot of credit for what they do. But what I do when I'm out among them is just as hard, and I'd like to explain why.
The amount of control I have over what I look like in photographs varies greatly from day to day. My form of Cerebral Palsy means I have to battle with my body every day to get it to move the way I want it to. My muscles are always tense to some degree. My arms and legs naturally want to contract into the fetal position. It's a constant, conscious effort to sit up straight. Any fine movement, like controlling the joystick on my wheelchair, requires all of the muscles between my neck and hand to be very tight. Otherwise my hand may end up drifting too far from it's target to do what I intended. When I walk my feet twist and my knees are rigid. Sometimes even my face locks up.
I take medication, exercise, and stretch every day to help manage my condition, and on good days it helps enough for me to look semi-fabulous in my pictures.
On bad days my left hand clenches shut, my right foot twists, and extending my limbs becomes exhausting - and painful. My smile looks more like a grimace, and I sound out of breath and impatient. Not exactly cover girl material.
So I get it when a lot of the cameras turn away. I get it when certain people snicker behind my back as I pass by. They aren't the first, and they probably won't be the last. I value those that understand and take the photo or pose with me anyway. I have no interest in competing with or upstaging anyone. I just want to open doors for others like me, plant the seeds of possibility in everyone I meet, tell the story of Nashville and it's marvelous creatives, and look as fabulous as I can while I'm doing it.
My life is about doing the best I can with what's available to me at any given moment. I do that with the understanding that someday my condition will make these outings practically impossible. But that day isn't here yet, and as I celebrate another birthday this coming Tuesday I hope to keep it at bay for another year.