Warning, this has been an internally stressful week and this is not a happy post…. Read at your peril, lol…
I have been a voracious reader pretty much since birth. I am one of Stephen King’s biggest fans, but I recently discovered someone who may knock him off my top spot. I recently discovered Joe Hill and I am HOOKED. If you like Stephen King or just like horror, in general, this may be your new go-to guy. (Edited to add, embarassingly I did NOT know but was educated by a reader yesterday that Joe Hill is in fact Stephen King's son writing under a pseudonym. The overtones of SK in the writing now make total sense! )
I’ve read two of Joe's full-length books, and I am now partway into ‘20th Century Ghosts’, which is a collection of short stories with a horror leaning. My favorite in this collection so far is Pop Art, which is a tale about a guy whose best friend is inflatable. Now, Joe Hill has a way of writing about fantastical things in a way that makes them seem like they are almost completely normal. No, this is not a story about an inflatable doll (and all the potential jokes that are going through your head right now). This is about a guy and his best friend who has an affliction like you might see in normal life with a kid who has MS or Autism or ADHD. Except for this particular kids, affliction is that he just happens to be made of plastic and full of air. Still goes to school. Still has a best friend. Just has to watch out for sharp things. The story doesn’t end the way you think it will, but I will leave you to read it and see what happens in the middle. It was the ending of this that got to me. The inflatable kid was struggling and knew he was dying and knew he wanted to end his life on his own terms. He talked about a pilot who flew so high that gravity lost its hold and he began to tumble, but UP, not down toward earth like you would expect. The inflatable kid wanted to end his life by seeing how high he could go and to see if the sky opened up at the top.
It was not the idea of suicide that got me here. It was the idea of a free-fall but in a completely different direction than you expected to be falling. I think the idea of this bothered me a lot because when you picture a free-fall in your head it HAS an ending. Eventually, you will hit the ground, and the game will be over. But if you are falling up? Well, all bets are off now. The only thing I can imagine in that scenario is being pulled endlessly into a black space where nothing is familiar, and no idea if there is a point where I will stop falling.
I’ve been falling up recently, and it was this book and this story that sort of gave me a framework for what I was feeling. PD is unlike a lot of other very bad diseases in that it doesn’t kill you in any fun, traditional ways. Not like a heart attack or stage 4 cancer or something that is likely to be terminal RIGHT NOW or within a year or two. There is not going to be a nice doctor who will sit you down and give you a time frame for the end of your life. In most cases you will not die OF Parkinson’s, you will die WITH Parkinson’s. And it will take a long, long time for most people to get there. That’s good and bad because while it means you have lots and lots of time to live your life and do great things, it means you have lots and lots of time to get up close and personal with all the million small, painful, unpleasant realities of living a long life with Parkinson’s.
Mo and I have almost gotten to the point where we cannot read the support group posts and I have not been to any live caregiver events, because it’s like having a crystal ball and looking into a future you don’t want to see. There are so many potentially bad things coming that it makes you feel like you are crouched in the middle of the road unable to move while a semi is coming at you. I feel like I am the inflatable kid falling up and watching the earth fall away from me, waiting to see if the sky opens at the top. Untethered is a bad feeling.
I’m not a selfless person at the best of times. I liked my life the way it was. It took me a really long time to get to where I felt settled and happy in my own skin. I don’t deal well with stress, and I am not a good caregiver. Now everything is upside down and I am reduced to looking at the equations of my life again and reevaluating everything. Before it was always, I need X & Y and I will have to give up Z to get that, and is it worth having a little less A and a lot more B to feel balanced? Now I still have to give up Z, I still have less A and more B, but the amount of C that is now in this equation throws the entire thing off. It’s like one of those new math word problems that a fifth grader should be able to do, but I learned the old math and I can’t make it come out even.
Today I sort of feel like a toddler whose block tower got knocked over and I am pissed because I spent a bunch of time stacking things up and now it’s gone but I don’t have enough energy to redo it and I really just want to take a nap.
Thanks for listening today, even though it was kind of a downer. I have no magic answers this week for how to get back on track and be more positive, but I can only hope that tomorrow will be better. Today I get to visit the neurologist with Mo, and then we will go to the zoo and stare at giraffes for an hour and leave the PD at home by itself. Sometimes just getting through the day and remembering that tomorrow has potential to be better is the best we can do.