I just got through with my doctor appointment to confirm my diagnosis. Well, that was interesting.
Imagine that you are the campaign manager for a political candidate who is constantly causing problems, making it harde to get elected. You have just spent the last few months spinning plates and the media, dedicating yourself to the task of turning a bad situation into a winnable one. You are feeling like you finally have a handle on the situation and things are running smoothly, the voters are willing to look past the candidate’s indiscretions, you are ahead in the polls and, against all odds, it looks like a win. Then on Election Day, the “Powers That Be” decide that the person with the lowest number of votes wins.
This was something like that, but not quite.
This was more like being told for several months that you have to eat cold mushy oatmeal for every meal, but only for 6-8 years until you die. You really hate cold mushy oatmeal, but you can wrap your head around it and eventually get used to it. You research cold mushy oatmeal, join cold mushy oatmeal support groups, and attend cold mushy oatmeal therapy sessions. And while the 6-8 years part sucks, you make a plan to make your last years memorable, and once again it is something that you can wrap your head around.
But then, in one appointment, your world gets turned upside-down. Again.
All of the work and research and therapy and connections that you have made have been for nothing. In fact, the therapy actually could be making things worse. You now get to live a normally long life, but instead of cold mushy oatmeal to eat, you only get to eat rotten eggs. That is, unless they decide you have to eat something else. This stinks.
Of course everyone is excited that I won’t be dying soon. Don’t get me wrong, I am happy as well. I will get to be around to see my grandkids grow up. But I am also very frustrated too.
I had a PLAN. Everything was figured out. Therapy was in MY hands. I knew what to expect. My life would be short, but my last years were mapped out so that they would mean something. This new direction that the doctor is heading is completely unfamiliar. It has no community to belong to and the therapy is mostly out my hands and includes drugs. My life will be longer, but I may spend some of it as a cripple. I don’t know how to plan for this.
To make matters worse, it has a stupid name. Dystonia. It sounds like a dysfunctional European country. Or an STD. “Ummm…yeah…I have, um, Dystonia.” Parkinson’s was at least a cool disease. Famous people have Parkinson’s and are advocates for Parkinson’s research. I’m talking Michael J Fox, Neil Diamond, and MUHAMMAD frickin’ ALI! But Dystonia? Nope.
So I guess I will have to put my boxing gloves away and give Bob the boxing dummy back to my son (apparently boxing could make Dystonia worse, stupid disease). I’ll also have to say goodbye to my Rock Steady boxing friends. Heck, I’ll probably get kicked out of the Michael J Fox fan club.
I have no idea whether or not I will keep posting to this blog. Dystonia is not very interesting. Maybe I can find something cool to write about instead. My 365-day challenge to stay active will get a little monotonous (…day 200/365…more yoga and maybe some stretching) but I should probably keep doing it. I am probably saddest about my bucket list. For now, it will go back to being one of those things you wish you could do, if only you could justify spending the money. Whatever it is I end up doing, whatever plan I come up with, and whatever experiences I can justify doing, the bottom line is – you are all stuck with me for a long time.
Ha. Jokes on you.