Sitting here in my Ford escape, parked under the few small tree/bush shade available,
about 15 minutes before work I’m thinking about dystonia. I’m thinking about the pictures I just saw on Facebook of a little girl with twisted legs. Her mom in the dystonia support group is wondering if loved ones ever get over seeing a loved one like that. Do they? Do you ever get over seeing your loved ones spasming, twisting, twitching, struggling to breath, often in pain or sometimes struggling to eat? Do you ever get over looking at the pain on our faces? Do you ever stop feeling helpless, angry, confused, exhausted taking care of us? Do you know how often we feel like a burden to you (this is our constant worry)? Do you ever notice how embarrassed we are because we worry how we look (hideous) and sound (stupid) to you? Why do you stay?
Since dystonia, especially during dystonic storms I worry about how I look a lot. I’ve never had an amazing self esteem, but it really sucks now. I know its vain, but it is a true emotional worry of mine. When my children see me or my boyfriend sees me with my limbs twisted and my hands contorted, my eye twitching and I struggle to breath I feel them looking at me and I want to hide. I want to move to another room and be alone during my spasm, except I can’t always get up and walk and so there they are looking and trying to help, feeling helpless and I am begging my children to look away because I don’t want them to see me this way. I want them to see me normal. I want them to keep that vibrant healthy strong image of me. I am suppose to care for them, to help them That is the natural order of things.
I am begging my boyfriend to let me be because I don’t want him to see my zombie walk, my twisted arm, my hunched back, my locked jaw. When we first started dating I remember feeling his stare as he watched me walk. He would come to me and place his hands on my hips. He made a comment once or twice back then about the way I moved. I remember moving a little slower so he could watch a little more carefully. I can still walk sexy most days, but other days it’
s a good day if I don’t fall over a twisted drop foot.