I’m getting used to the words incurable, painful, and the sentence, “Its hard to diagnose and difficult to treat.”
You started off in my life as bouts of severe fevers, headaches, swollen glands, and many missed days of school. I was four. When I started secondary school the stress of the change encouraged you to grow, you became all the more vicious. i missed so much school and then that same year my great grandma grew sick, the worry, stress and grief was something you fed off of, you stormed my body like an army, I cried from grief and from pain, i could barely move, days, weeks, months off of school, so they started to call in the social workers, dragging me out of class to meet this smarmy women who was determined to convince me i was fine. The odd day I made it there my teachers gave me disapproving stares, my friends were used to me not being there, The only place i wanted to be was at home.
Of course we have found some things that have helped.
I am one of the lucky ones, as i have a family who put energy and hope to curing you, The kind i cannot muster, when I give up I have them. My mum, aunt, grandparents, even my quiet dad who have no idea what you are.
I am renownedly sceptical of trying new fads, my cynicism roots from my need to not get hopes up. but i am glad i have them to hope for me. because I have resigned myself to a lifetime with you, I know for fact Dystonia doesn’t go away, and I’ve been with you for so long it’s its hard to believe you’ll ever let me go. This doesn’t mean I stop trying, it just means I stopped expected they’ll be a time in my future without you.