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Allan Cole Writes about Life with YOPD and Finding Support in Team Fox

Cole Running Group

Editor's Note: Allan Cole was diagnosed with Parkinson’s disease (PD) in 2016, at the age of 48. In March of 2018, Allan joined a team of 11 other runners, several of whom have Parkinson’s, for a 200-mile relay race through Central Texas to raise money for Parkinson’s research with Team Fox. The following excerpt from his recently published book, "Counseling Persons with Parkinson's Disease," recounts some of his experience:

Somewhere near the small Central Texas town of Wallis, I am running my second of three legs in the Texas Independence Relay. It’s after 3:00 A.M. on a Sunday morning in late March, nearly fifteen months since the diagnosis that changed my life, and I haven’t slept in twenty-two hours. I am on a team of twelve runners. Five of us have Parkinson’s and all of us are touched by it — through spouses and partners, family members and friends. Our team captain and my new friend, Craig Potts, also lives with Parkinson’s and has brought us together. We call ourselves “Runners Against Parkinson’s” and it’ll take us nearly thirty-six hours to complete the 200-mile route, which began in the town of Gonzales and will end in Houston. We are more than halfway there.

Navigating a rough dirt road, I have found a good running cadence under a clear, starlit sky. It’s warm, still, and quiet; and all I hear are 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 night. If I turn my head slightly to the right or left, I glimpse a first swath of the massive fields of bluebonnets.

My mind wanders back over the past year and a half and to the lessons I have learned about myself and others — lessons about illness and resilience, about darkness and light.

I have learned that medicine is at once miraculous and maddening, able treat many illnesses, including Parkinson’s, but not necessarily able to cure them. This reality requires you to set expectations accordingly, hoping for better treatments and a cure, believing they will come because the science says so, while recognizing that progressive diseases progress and that to live means not betting it all on the future but also cashing in on today.

I have also discovered the incomparable healing power of living with greater openness and vulnerability, especially when tied to a measure of authenticity you never thought was possible. We wear masks, after all, and more often than we realize. Our masks conceal our pain but can also intensify it and allow it more of a destructive influence than it has to have. Although there are surely too many people in the world of whom we should never ask for more vulnerability — those who are poor, abused, neglected, marginalized, or victimized — many of us have much to gain by letting our guard down, 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?” If nothing else, Parkinson’s has taught me the benefits of unmasking earlier than the midnight hour.

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, points me toward others, and invites me to put PD to work on behalf of something good and life-giving. In this respect, I have learned the importance of embodying compassion — which literally means “to suffer with”— and joining with others to alleviate suffering. I’ve discovered that trying to help ease another person’s pain or burden helps to lessen my own and that all of us who travel the Parkinson’s road, or one like it, are sturdier, more resilient, and more hopeful together.

Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, a professor of psychiatry and behavioral sciences at the Dell Medical School. He is the author or editor of 11 books on a range of topics related to bereavement, anxiety, and spirituality. His latest book is Counseling Persons with Parkinson’s Disease (Oxford University Press, 2021). For more from Allan, check out his blog PDWise and follow him on Twitter @PDWise.

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