I haven’t posted anything in a few weeks because I was in a slump. October 3rd was my one year anniversary for when I was diagnosed. I spent a lot of time thinking about all those undiagnosed years and how miserable they were. I always knew something was wrong and tried so hard to hide it.
During that whole punk rocker phase, for the most part that was not the real me. Living that way made it easy to put up walls that no one wanted to try and get in. I had tried fitting in and then being a wallflower but that always made me a target for the other kids, so I decided to pull a 180 and that actually worked. Inside was something real with this shell that said “stay away from this freak” and it kept a lot of people from getting close. I wonder how many opportunities I missed by pushing everyone away.
I hated having this unnamed shadow over everything I did. When I finally found out what had been wrong, I learned I was lucky even though it doesn’t feel like it. Way back when someone asked what was wrong, I had no answer. I always grew up afraid of knowing one day I would get worse. I refused to think about it because I would have went crazy.
It’s ironic that now that I am getting worse rapidly, in some ways I am better than ever. It’s a whole new world of worry as weekly I am less and less able to do things. I work harder and seem to get less accomplished. But there is a right side to all this! Instead of some unnamed bunch of symptoms hanging over me, I can now say I have Dystonia and that I do a lot more than most people who have nothing wrong other than laziness and apathy.
I will be really surprised if I am not using a walker or at least a cane by the time I get to my two year Dystonia anniversary. I’ll also be surprised if I am still able to work by then. At the rate that symptoms have progressed in a year, I’m hoping for six months. My symptoms didn’t just appear on Oct 3, that’s just when things began progressing and it got bad enough I gave in an went to the doctor and sent to the neurologist.
I face every day knowing as soon as I wake up it’s going to be a struggle. Some days I just want to roll over and quit. But where in the hell is the fun in that? Waking up knowing you have some kind of challenge ahead should just suck, and every now and again it does, but for the most part, I feel more alive being defective than I would otherwise.