Yesterday
It’s early in 2017, a few months after my Parkinson’s diagnosis, and I keep trying to learn my way out of the illness. I’ve never had difficulty with living in my head.
I open my laptop and begin researching. The clock on the mantel tells me it’s 5:00 AM. Some mornings I begin even earlier.
Pointing and clicking my way through websites and sifting through articles, I learn about the latest Parkinson’s treatments, clinical trials, and groundbreaking research. I scroll through the list of the Parkinson’s Foundation’s Centers of Excellence, which distinguishes top-flight treatment centers across the world. I search out Parkinson’s organizations, support groups, and ways to get involved…as soon as I tell people I have this illness.
In the meantime, as we do most mornings, Google and I search for reasons to hope.
We also meet most nights after my wife and children go to bed. As night glides into morning, I consume dozens of articles, books, and videos. Since my diagnosis remains a secret from everyone but my wife, Tracey, it feels like I’m sneaking around to watch Parkinson’s porn.
With certain videos, I plot out potential timelines for disease progression, noting how people appear to fare across a span of years. “Look at Michael J. Fox back in 1997,” I say to Tracey one morning as I play the video from our kitchen’s island, “and look at him now. After over twenty years with it, he still looks good; and he’s working!”
I hone in on these videos like a scientist looking through a microscope in search of a breakthrough.
Today
Three years later, my colleague and I sit across from one another in my campus office sipping coffee. With mid-semester demands pressing down on us, it’s been weeks since we’ve spoken face-to-face.
Eventually, our conversation turns to my health. I never mind when it does, when someone asks how I’m doing, though most who ask seem to feel awkward about it. Their “Do you mind if I ask about” type of introductory clause gives them away.
I understand the discomfort; it can be difficult to talk about illness. We assume, often mistakenly, that persons who live with illness could not be happy or content and that asking about their condition will only remind them of their pain.
For some of us, however, speaking about our illness brings meaning to the experience and disarms it; its powerful grip softens, if only a bit. It’s enough to help.
After spending nearly a year in the Parkinson’s closet, I decided that my attempts to make sense of this illness required speaking about it publicly, and with transparency and candor. I sometimes tell Tracey that I fear one day waking up and thinking, “Oh &^%#, what have I done? I shared too much!” But I’m willing to take this approach because the benefits are greater than the risk. Others may need to take a different, perhaps more private path, and I honor them and their choices.
On this occasion with my colleague, after a few brief exchanges, he asks, “What has changed since you were diagnosed? I mean, what’s different now?
It’s a reasonable question when one lives with a progressive disease.
I tell him my symptoms remain manageable and are still only mildly disruptive, but I know this will change over time. I mention that my biggest problem right now is difficulty sleeping, a side effect of medication more than anything, and that I’m getting on average four hours each night and I’m trying to figure out a solution.
“That must be tough,” he says.
“It’s an acquired taste,” I say.
He chuckles.
“What’s changed, honestly, is I’m no longer consumed with how quickly this will progress, and with what life will be like 5, 10, or 15 years from now,” I say.
He nods.
“I think about it, of course, but not like I used to. Instead, I really try to live in the moment, to live for today, to not miss seeing the beauty, love, meaning, joy, excitement, and opportunity that’s right in front of me because my eyes are continuously peering over the horizon.”
“What led to this new perspective?” he asks.
“I discovered how much time and energy I was spending on trying to figure out something for which there is no answer. Everything I read confirmed what my doctors told me, that you can’t predict how Parkinson’s will progress; its pace and severity are different for everyone.”
He nods again.
“So I decided to put that time and energy into what I have today, what’s life-giving, and beautiful, and true. A lot of this is fleeting, too, just like health, and I don’t want to miss enjoying it all, as much as I can.”
“That makes a lot of sense to me. I’m happy to hear you’re in a better place with all of this,” he says.
Tomorrow
I glance over my colleague’s shoulder and see the rows of books that line my office bookshelves. These books tell a decades-long story of intellectual and existential questions and pursuits. I notice the bright red spine of Wendell Berry’s What Are People For?—one of his many volumes of essays, its cover worn from so much use.
Remembering a Berry line, I quote it to my colleague: “Let tomorrow come tomorrow. Not by your will is the house carried through the night.”
Which is one way of saying that these days I work less at learning my way out of Parkinson’s.
__________
Photo by Aleksandr Ledogorov on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. Currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press. Follow him on Twitter @PDWise