Fortunately, realization came to me slowly rather than suddenly. There was no revealing moment of great suspense: no shocked faces, no crying loved ones, no wine glasses dropping suddenly to the floor. Instead it came to me in small increments of understanding: a problem, the possibility, Google searches, increasing probability, tests, diagnosis, more appointments...
Because this process took place over a period of a couple years, I was a little better able to work through it in my mind, having little glimpses of intermittent quiet between the stages in which to absorb it.
But it still occupied me twenty-four/seven. I was quiet a lot. I was sad. I pondered the situation and weighed the options. What does this mean? Do I spend the rest of my days pitifully shaking and staring off into tomorrow like Muhammad Ali? Will I lose my mind? What happens when the pills no longer work? How much time do I have? Is there nothing ahead of me but deterioration? Is there any up side? Maybe I don’t even have PD… maybe I have something else? Would that be better or worse?
And for days, weeks, months, that’s what you do. You try to look at it from all angles, hoping that you’ll stumble upon an angle that you haven’t’ thought of yet. You feel alternately happy and yet sorry for yourself: “Why me? Why now? Why didn’t this happen to the boss or Jerry Sandusky or Mohammar Ghadafy instead?”
You write down all of the things that are changed… some forever. Priorities are rearranged, belongings are gotten rid of, money is marshaled and options are cast out in full view like a spilled bag of marbles. “… if I had it to do over again, what would I do..?”
“… if I had it to do over again….?”
And then you realize that, in a way you DO have it to do over again. Apart from the Parkinson’s part, what happens next is largely a clean, open slate. Sure, life has always been an open slate but now the game has a name and it has a time limit. The world is no longer your oyster, that’s a younger man’s game. But that’s OK too because you’ve had some oyster…not a lot, but enough from time to time to know what it tastes like if only in isolated little bits. You’ve been there, you’ve sampled it; on occasion you even rolled in it.
So how do you react? After the initial shock wears off and you finish the trying-to-make-lemonades-out-of-lemons bit, you finally muster up all of the “well this is a fucking, rotten, ill-timed, inconvenient, pathetic, unfortunate thing to happen” that you can find and then stew in it in self-pity. That one takes a while.
But at some point you start sticking your head out the other side and looking for something positive. I’m still somewhat shocked but grateful that I’m finally at a point of having an understanding of the situation. Oh, don’t get me wrong, it’s STILL a shitty situation, but rather that fret over what I’ve not done in my life, I’m trying to get to work GETTING the things done that I can… as many as possible.
Look at it this way: you didn’t just die in a horrible automobile accident or get murdered walking down the street. You haven’t been told that you have terminal, inoperable cancer or that you are about to be eaten alive by vicious, flesh eating beetles. Granted those things might yet happen but at this point you only know that you HAVE PD. You probably have a few other things that are racing to kill you… we’re all dying of something. But at least you know what you have. You can make plans, put priorities in order.
I’ll tell you one thing, this focuses my priorities. I’m no longer pondering old age and wondering how I’ll ever save some money to die on. I’m now more inclined to focus my energy on hustling to get my art out. It will outlive me.
The biggest realization for me is that this, right now, this time right here is probably about as good as it’s gonna get. At least physically, it’s all downhill from here. All of my life I’ve had the trusted fall back fantasy of Someday, that rosy in-the-future place where I’m rich and famous, and content, living on a tidy farm Up North along the Betsie River. But I know that, even should those fantasies finally come true - I’ll be nothing but an ever crippling old man to enjoy them.
To live with this Parkinson’s you need to realize:
1. You won’t be getting any better
2. You don’t have to go downhill getting worse.
3. It may be the end of a lifestyle but it’s not the end of your life.
Now get back to your corner and resume your sulking.
© 2012, Jeff L. Howe, all rights.
This post, plus harmonica recordings, a graphics (not graphic) slide show, and posts on exploding babies, meatballs and the invention of sex can be found at jeff-howe.net. Go there now.