I’ve noticed something disturbing. There seems to be this intrinsic tendency to assume that because someone is sick, laid up, suffering from some affliction, or otherwise down on their luck, they must have either a) done something wrong to get themselves into that situation or b) deserve it somehow, or both. This is incredibly wrong. I’ve got to stop doing that to myself.
I often catch myself holding myself accountable for Parkinson’s symptoms. How does this happen?
At risk of over generalizing…Parkinson’s barrages the sufferer with such a dizzying array of confusing symptoms that come and go, sometimes by the hour, that oftentimes the afflicted doesn’t know how to process what is happening to them. At least…that’s what I believe happens to ME when i slowly begin suspecting that I have something to do with the cruel transformation that I undergo from fully functioning middle aged adult to decrepit 90 year old man.
I think that we humans, and especially myself as an engineer, want to understand things. But Parkinson’s spits in the face of definition. If refuses to be known. When I experience Pd symptoms, my mind tries and fails to figure out how it is even possible that now, suddenly, I can’t walk. Unable to determine a cause, with no other recourse, it automatically decides that it must be something that I did that caused this symptom. As unfair as that is, I catch myself doing this all the time.
In fact I did it to myself yesterday…
Yesterday I had a REALLY, REALLLY good morning. From the minute I got up I was moving very, very well. After doing a couple hours of telework I went climbing at SportRock with Molly Donelan’s Parkinson’s Climbing Group. Lately, when I climb I have a lot of trouble with “overgripping” where it’s as if I’m trying to crush the hand grips and my arms quickly tire. Also, I usually have a lot of trouble using my legs. But yesterday I had no problems whatsoever. Routes that would normally give me a lot of trouble I walked up without breaking a sweat. One of our other regular attendees even exclaimed, “Who ARE you!?”. So I had a really great morning. Though I thoroughly enjoyed, it I knew it wouldn’t last.
Oh was I ever right about that…
A few hours later I was at home finishing up an hour long teleconference. Now, I needed to head into the office for a bit to work with one of our young engineers. However, when I got up to get my shoes on and head out the door, Parkinson’s says: “Surprise!” I can’t move. Claw arm, shuffle feet, pain. It’s an Ambush.
The fight is on.
With grim determination, I manage to shuffle to the door, get my shoes on, stumble out the door, and fall into my car. Firing up the engine I’m wondering how I’m going to even function at work. At this point I’m used to being seen stumbling around. That no longer bothers me. But this is bad. How am I going to even traverse the 100 tortuous feet from the parking area to my office?
During the drive into work my mind quietly starts trying to make sense of what just happened. “Hmmm what did I do wrong?” it thinks. Pondering a number of unlikely (and untrue) scenarios where I’m somehow at fault, it finally settles on, “I must have gone too hard this morning.”
Once at work, I do somehow manage to shuffle feet my way to my office and work for a couple of hours. Now, done with work I need to go pick up a few things at Costco. At this point, I am actually moving somewhat better but not well enough to walk the expansive aisles of Costco without difficulty. So, though I don’t really like using it, I’m forced to use the electric cart.
Later on in the evening when mulling over the events of the day. I started to think about my amazing transformation:
“So, I went from climbing like a champ in the morning to…needing an electric cart to get around Costco. And….this is my fault because….I went. too. hard?”
Now, in the quiet of the evening I recognize right way the folly of that initial assessment and think:
“Nope. Try again. I couldn’t walk because: Parkinson’s. “
Now, I’m not saying that I shouldn’t try to pay attention to cause and effect. There are definitely certain things that seem to generally help make symptoms worse, or conversely there are things that seem to generally make symptoms better. I definitely need to pay attention to that. But oftentimes, Parkinson’s defies my attempts to define it. It’s especially during those times that I start crossing the narrow divide between association…and blame. If blame goes on for too long, like it has in the past…not good.
So I have to be mindful of this and be sure to go easy on myself. All any person can reasonably be asked to do is to put in their best effort.
So don’t get caught up in blaming the patient. Self love: It does a Parky good.