Daily Rant of a Dystonian

My teachers are aware of my dystonia or rather they are more aware of the severity of it now that more of my symptoms have surfaced during the day. Actually, this is what happened. My ex came back into town, made his usual ex asshole words and demands and long story short that set me off into an anxiety attack that kept me from getting much sleep. That lack of sleep and anxiety caused major fatigue that triggered my symptoms at the end of a school day during a meeting with my teacher.

I struggled to speak.  The muscles of my mouth on my left side where locked. I had to write her a note and slipped it in front of her as I approached her to tell her why I couldn’t speak. I wrote that I could still understand everything that was going on and everything she needed to tell me and in writing I could respond. She like an awesome OT understood, was calm, spoke to me, saw I understood what she was saying and could communicate, but could not speak. I tried to speak a few times, but my words came out choppy or stuttered or not at all depending on what words I had to say. I was so embarrassed and worried about what she was thinking. Was she going to kick me out, fear that I would hurt everyone in my path? Has she not seen all the hands on I have done so far?  Has she not seen my hard work, heard my knowledge, seen my creativity, my love for the OT field?

It was embarrassing too. I worried that my classmates might see me, but luckily my classmates were occupied and speaking loudly about the homework assignment as we sat outside the technology for disability center where we had just had a tour to show us what kinds of technology is available to people with special needs.

As I tried to speak the look of concern on my teacher’s face at the end of her review of my homework assignment worried me. She asked me if I was ok. I told her in choppy whispering words that I was just frustrated and as my turn was done I got up and found another place to sit among my classmates and correct my homework mistakes. When my classmates asked me a question or made a joke I nodded my head or smiled. I rested long enough to be safe enough to drive home and I waved bye to those paying attention and I quickly snuck away to outside and then the parking lot to my car and then home.

Later my teacher and I had a meeting and her first concern was for me and then naturally her second concern was for my future patients. So she and I and with my permission (she protected my medical rights like the natural OT that she is) my other instructor discussed what my symptoms are, how often they happen and so on. I think they felt better knowing that most of the time I can feel my symptoms coming on and I can take myself out of a situation so that I do no harm to anyone including myself.

We discussed what the doctors know and what they don’t know and all the tests I’ve had done and how as soon as health insurance is available to me again i will get a second opinion. We also discussed how it would be strongly recommend to talk to the the field work instructors before I start field work for liability purposes as well as for any assistance or modifications or help I may need during any symptoms that may occur during field work. My instructors assured me it was my right not to, but it would prevent confusion and so on in the future. I agreed. We all discussed discrimination and facilities right to turn away and so on. I discussed my understand of both sides of it, my worry of discrimination and my best work etc., etc.

Really it went a lot better than I expected it would and when assignments for fieldwork were handed out they did not baby me and give me easy stuff. That made me feel good. So, this is my chance to show myself what I can do and say Fuck You Dystonia! You cannot control me. You send me a spasm and I learn to rest, to calm down, to sympathize with others who live like this. You lock up my limbs while I’m walking and I walk backwards, sideways, lay down rest and then get back up. You may slow me down and I appreciate time more, spend more time with kids, become more patient. You control my left side but I still have my rights side. Every breath I can breath I cherish, because thanks to you I know whats its like to not to breath over and over again. Every word I say I cherish because thanks to you I cannot always speak. Every relief of pain I live I cherish because oh the pain you bring is torture. Every day I walk, talk, breath, feel “normal” I cherish because even though I am more often normal than not, it takes a toll on me. I am stronger because you are my daily battle. You get me down and my family gets me back up.  Fuck you dystonia or whatever the hell you are!

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