“The beginning in every task is the chief thing.”
Plato
Running
Somewhere near the small Central Texas town of Wallis, I am running my second of three legs in the Texas Independence Relay. It is after 3:00 a.m. on a Sunday morning and I have not slept in 22 hours.
I am on a team of twelve runners. Five of us have Parkinson’s disease but it touches us all. Our team captain and my new friend, Craig Potts, lives with Parkinson’s and has brought us all together. It will take us nearly 36 hours to complete the 200-mile route, which ends in Houston. Having begun the previous morning in the town of Gonzales, we are over halfway there.
Navigating a rough dirt road, I find a good running cadence under a clear, starlit sky. The world is warm, still, and quiet. I hear only my feet hitting the road and the air moving rhythmically in and out of my lungs. The LED headlamp strapped over my Houston Astros baseball cap shines a few feet in front of me, illuminating the tranquil dark sky. If I turn my head slightly to the right or left, I glimpse a swath of massive bluebonnet fields that surround me.
It is March of 2018, nearly 18 months since learning I have Parkinson’s at the age of 48. Still tinged with anxiety much of the time, my thoughts linger this early morning on lessons I am learning, about myself and others; lessons on illness and resilience, on darkness and light.
Learning
I am learning the importance of getting to know other people who have Parkinson’s disease, something I could not do for nearly a year after my diagnosis, when I lived in the Parkinson’s closet. Even after publically sharing my diagnosis, before becoming friends with Craig I knew little more than a handful of people who have the disease. Now, as I get to know my teammates who live with Parkinson’s—Allie, Bob, Deanna, and Alex, our videographer—I have a sense of calm that has been so elusive. These new relationships put me at ease and make my experience feel more normal. Our conversations spark inspiration and new wisdom. Spending time with my Parkinson’s kin offers a previously unimagined feeling of hope, one tethered to being in solidarity. To my surprise, I am learning how close you can feel to another person you have only just met, simply because you both have the same insidious disease.
It’s a beginning.
I am also learning the healing power of living with openness and vulnerability, especially when tied to a measure of authenticity you never thought possible. We wear masks, after all, and more often than we realize. They conceal our pain, but precisely because they prevent its expression these masks can intensify it and allow it to have an even more destructive influence.
Of course, there are many people in the world of whom we should never ask for more vulnerability: those who are poor, abused, neglected, marginalized, or victimized. But many of us have much to gain by removing our mask, at least for a bit, and allowing others to glimpse our humanity in its more exposed and unvarnished forms.
Kierkegaard asked, “Are you not aware that there comes a midnight hour when everyone must unmask?”[1] If nothing else, I am learning from Parkinson’s the benefits of unmasking earlier than the midnight hour. These benefits include a sense of calm, healing, and hope.
Another beginning.
Parkinson’s will never define me, but it certainly guides me. Like an LED headlamp, it illumines paths in front of me: those of illness and health, scarcity and abundance, suffering and joy, mystery and understanding. It also gets me outside of myself and points me toward others, and this invites me to put Parkinson’s to work on behalf of something life giving. In this respect, I am learning the importance of embodying compassion—which literally means “to suffer with”—and joining with others to alleviate suffering. Trying to help ease another person’s pain or burden helps to lessen my own, and all of us who travel the Parkinson’s road, or one like it, are sturdier, more resilient, and more hopeful together.
Still another beginning.
Living
After lifting up the front of my Team Fox shirt to wipe sweat from my eyes, I begin to run faster. With the next relay transfer point less than a mile ahead, the support van that has been checking on me honks and goes by one last time, carrying half of my teammates. The other half, already in town, awaits our arrival.
Running another hundred yards and making a right turn, the uneven dirt road changes to smooth, flat pavement. Ahead of me, the yellow glow from several old fashioned street lamps hangs in the air.
I shift into an even higher gear and feel like I’m gliding.
My breathing quickens. Radiant stars, as numerous as the bluebonnets at my feet, reach from the night sky and hold my gaze. I hark back to something I read years before, when I was graduate student studying the work of Erik H. Erikson, a 20th century psychologist. It’s something I’d forgotten if I ever really believed it.
He observed that regardless of our age, from the cradle to the grave, “Life doesn’t make any sense without interdependence. We need each other, and the sooner we learn that, the better for us all.”
I keep running toward the yellow glow, toward my team.
The road straightens, and beneath a row of lights that line one side of the downtown street stands a thickening crowd of people, mostly other runners, all of them cheering; all a part of something bigger than themselves. I see my teammates: Allie, Bob, Emily, Deanna, Ron, Kristi, Shae, Amy, and Salvador. Some wave their arms, others clap, another rings a cowbell, their collective cheers growing louder as I pass by.
High fiving Craig, I pump my arms and start the final kick toward the transfer point a couple of hundred yards away, where I’ll pass the baton to Lori and our collective cheers will land on her.
My thoughts drift again: to my wife, Tracey, to our daughters, Meredith and Holly, to my Mom and Dad, to trusted friends and colleagues, to my Parkinson’s kin, to the better way I’m beginning to live.
And beginnings matter.
[1] Søren Kierkegaard, Either/Or, II.146
_______
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. 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 @PDWiseBlog