Facing the Future with Parkinson's, Stoically and Realistically
Last updated: May 2023
In life, there are 2 sides to every story. For instance, my whole dealing with Parkinson’s thing says that in order to be optimally functional, I need to avoid timelines. In the early days of my condition, I would think things to myself such as wanting to have so many good years left to do X or Y.
Eventually, I learned that I want to have all the good years to do everything that I can, not just some of them. Is that unrealistic? Probably, but it’s better than living with an expiration date.
Fighting to remain present
Contemplating the end of any stage or ability and being forced to deal with the next stage is a big no-no for my coping strategy. This doesn’t mean I’m in denial of my declining ability or nasty realities, let alone what the next symptoms at the next stage are. In fact, I’m hyperaware of the crap sandwich that is Parkinson’s. Here, I’m usually aware of these symptoms when I process them.
That said, I can’t wait for these end days to appear for any length of time. That stuff will just depress me on an exponential level. Granted, it’s not easy to forget about it, but that doesn’t mean we can’t find a way to understand that these symptoms are the new (un)normal.
It’s not easy to get there, but when we find the solace in the center of the storm, we need to fight like hell to remain in the calm, no matter what goes on around us.
I know what Parkinson's can take from me
And yes, I know the answer to the question of what Parkinson’s could take from me (anything). Additionally, I know what it could take from me if I don’t fight back with physical, mental, and pharmaceutical means (everything).
I know where the sliding board to my future will drop me off. I’m just not going there until I absolutely have to go. Thus, I need to focus on enjoying life while I can. Like Pearl Jam sings, "I’m still alive." I don’t like to think about a future world where I can’t be who I want to be, not doing what I want to do.
Nevertheless, just because I’ve acknowledged my life sentence, doesn’t mean that the people around me are fully prepared to hold the gates closed as the hordes of monsters try to break in.
The caregiver's reality
In my life, when Parkinson’s takes too much "something," it’s going to be my wife and family’s job to pick up the pieces. Frankly, that sucks.
From a young age, I learned that I didn’t want someone else to clean up my mess, especially if it’s my fault it was created in the first place. This maxim was reinforced to me in the Air Force, especially that time I followed a sergeant and a major across a boundary line on the Turkish-Syrian-Iraqi border and my boss had to acknowledge my military status. Not fun!
For that guy, he had to waste an afternoon on a random nobody. My wife took a vow to forever, in sickness and in health, and it looks like she's being shown the fine print. Thinking about that ... well, that sucks. More importantly, it means she gets a major vote on decisions.
Saying goodbye to our home
It’s definitely hard knowing that we will eventually need to redirect from the things we’ve achieved. For instance, we’ve lived in a house for 13 years.
In my life, I’ve never been in the same place for that long. Even living in the same community from age 6-18 isn’t like making your own marital abode. Saying goodbye to that affects our whole crew, even Sparky who loves his backyard. None of us view our row home as a temporary situation.
Parkinson's doesn't give a rat's behind about what we think though.
Adjusting to changes
Thus, if the meantime means contemplating downsizing clutter and having an adequate space for 2 people, maybe this is a stopgap realization for how to deal with something in the future. Until that time, I’m going to stop and smell the flowers while enjoying the siesta zone that is our backyard fire pit. Counting down 2 weeks until spring is a much different and much better timeline that I can get behind.
Do you experience issues with spatial awareness?