by Jane Miller
It’s difficult when friends tell you something you don’t want to hear, especially when it’s something to which you must pay attention.
Since my diagnosis in April, 2014, I have vowed not to let Parkinson’s disease define me. A friend acknowledged this was laudable, but reminded me that even if I do not let it define me, Parkinson’s is part of my life and will not be ignored. So I start to write.
Erik walks by on his way to the shower.
“What are you working on?”
“A new blog,” I answer.
“Cool, what’s it about?”
“My Parkinson’s. I figure it’s not going away. I might as well make friends with it, since it’s sort of taken up residence.”
“In the spare bedroom,” he says.
“In the aft stateroom,” I clarify, referencing our life on the boat. We smile at what that means.
Then I retreat into another of my mental compartments. I have a wonderful talent for compartmentalizing. Erik calls it “denial as strategy,” but as well as he knows me, he doesn’t understand.
Compartmentalizing is how I coped with a fall down a flight of stairs, cracking a vertebrae and ending up with neck surgery. With the death of my mom, who was also my best friend. With fibromyalgia and chronic daily migraines. With a divorce and a cross-country move. With knee surgery, nose surgery, and shoulder surgery, all within about a year.
With the loss of a great job due to a corporate re-org. With the loss of insurance. With the advent of a horrific job. With a life-altering fall and the pain of recovery, and only weeks later the loss of my father, who was my hero and my connection to my mom. With the diagnosis of Parkinson’s.
And now … as I face mounting medical bills, student loans and education bills, and the application process for Social Security disability, I teeter toward the edge of total mental shut-down. So I push it all into another compartment and go about my day.
As my friend astutely pointed out, while I like taking care of others, the person I need to care for is myself. That is not one of my strengths.
Parkinson’s is pervasive. It affects my balance, how I walk, my speech, cognition, my ability to form complete thoughts and sentences when my medication wears off … and depth perception. Visual dysfunction is common in people with Parkinson’s. It affects reading, driving, and making our way around our environment. We don’t blink as often, and it’s more difficult to move our eyes downward, to control eye movements, to track, and to keep things in focus.
I don’t blame my fall on Parkinson’s, though I could. I honestly don’t remember how I fell. I vaguely remember the feeling of falling, but I don’t know how my foot missed where it was supposed to land. If I fell off-balance; if my foot slipped on the night-damp seat; if I just missed the seat completely …
Losing my eye has extinguished depth perception. I do things now, like knocking my right cheek into the shelf because 1) I couldn’t tell how close it was, and 2) I couldn’t actually see it at all.
Specialists will tell you that Parkinson’s Disease is not fatal. They say “People don’t die from Parkinson’s; they die with Parkinson’s.” They’re just parsing words. The disease itself won’t kill me, but what it does to my body very likely will.
Falls are serious issues when you have Parkinson’s, think traumatic head and face injuries. Difficulty swallowing can cause aspiration, which can lead to pneumonia and death. Dementia is not uncommon.
Parkinson’s reaches through the walls of my compartments, bringing fear and uncertainty. I am afraid of becoming a burden. Afraid of not being able to do what I want to do, what I used to do. Afraid of being second to the boat in Erik’s world.
So what do I do? I know how to compartmentalize. Lock things away tight to deal with at a later, less painful, time. But I’m only fooling myself.
I don’t know how to deal with something that refuses to be compartmentalized.