It’s the Parkinson’s

by Amy

I have now taken two writing classes using "The Hero's Journey". This program is meant to help those with Parkinson's (PD) navigate their new, complex lives. But I can see how the Hero's Journey is for anyone and everyone facing health challenges, a loss, or wanting to just look within themselves for better understanding. Having to look so deep into what scares me, and then put it into a story has also brought me revelations. Or is that realizations?

When your life slows down and your world gets smaller you get more focused on what really matters to you. Connection and understanding are really important to me night now.

The insidious nature of PD can make me feel isolated because it's so hard to explain how my symptoms affect every minute of my day. A lot of people have some kind of chronic condition and we can all experience symptoms that are similar to each other. Over 25 years ago, my mother's oncologist told me "The human body only presents with so many symptoms. It's up to doctors to figure out which symptoms lead to what diagnosis. That's why the field of medicine is called a practice.”

So when I say I'm not feeling well these days, that's in comparison to my already diminished health. When I say I'm tired or my hips hurt or I'm feeling anxious, these things are magnified for me. All of us mean well when we empathize with someone about things like feeling tired, having an achy back, or being depressed or anxious. We say, "I know what you mean" or "have you tried this?," etc.

It's so natural to say and do but we really shouldn't. Sure we can all relate to a lot of the individual symptoms, but put them all together and you get a tangled ball of holiday lights. It's impossible to pull them apart and if you do, you'll find some strings completely broken, useless, others only partially work, and those that do work are weak and struggling to stay functional. If I'm going to truthfully share what symptoms are giving me trouble on any given day, I'm sharing because I want you to know as an explanation for my acting uninterested, irritated, and honestly, just plain WEIRD!

So if you ask me why I am experiencing that symptom - did I "overdo it' and that hurt my back OR am I moving slow because I'm tired or I ache OR am I quiet and acting depressed because "something happened” - the answer is NO; It's the PD. If we know each other well enough, and I don't fear that I will offend you, I'll look at you with an expression of disbelief and say "Have I told you I have Parkinson's?!!*

In some ways, it's great to have that PD card that I can pull out and play at any given time instead of dragging the inquisitors down a rabbit hole looking for logical explanations. I don't do this to escape talking about things or to be snarky. (Okay, a little bit). it's just that most of the time there's no explanation or reason why. It's just the Parkinson's magnified for me. All of us mean well when we empathize with someone about things like feeling tired, having an achy back, or being depressed or anxious. We say, " I know what you mean" or "have you tried this?," etc.

It's so natural to say and do but we really shouldn't. Sure we can all relate to a lot of the individual symptoms, but put them altogether and you get a tangled ball of holiday lights. It's impossible to pull them apart and if you do, you'll find some strings completely broken, useless, others only partially work, and those that do work are weak and struggling to stay functional. If I'm going to truthfully share what symptoms are giving me trouble on any given day, I'm sharing because I want you to know as an explanation for my acting uninterested, irritated, and honestly, just plain WEIRD!

So if you ask me why I am experiencing that symptom - did I "overdo it' and that hurt my back OR am I moving slow because I'm tired or I ache OR am I quiet and acting depressed because "something happened” - the answer is, “NO; It's the PD.” If we know each other well enough, and I don't fear that I will offend you, I'll look at you with an expression of disbelief and say "Have I told you I have Parkinson's?!!*

In some ways, it's great to have that PD card that I can pull out and play at any given time instead of dragging the inquisitors down a rabbit hole looking for logical explanations. I don't do this to escape talking about things or to be snarky. (Okay, a little bit). it's just that most of the time there's no explanation or reason why. It's just the Parkinson's.