Psychologist by training, storyteller by inclination, Parkinson’s patient by chance, active writer, prior to Keepin’ On: Living Well with Parkinson’s Disease (Nighthawk Press, 2018), I’d written on a range of subjects other than Parkinson’s disease. My first book, Tributes & Tirades: Taos Life and American Politics (Nighthawk Press, 2013) is a collection of social and political commentaries. My creative nonfiction appears in several anthologies. Many dozens of my Op-Ed essays have been published in New Mexico newspapers. Yet, I’d resolutely refused to write about Parkinson’s disease.
Writers write about what they know and some years after being diagnosed, I came to know Parkinson’s disease up close and personal. Nevertheless, I resisted writing about it. It’s not that I was trying to hide having Parkinson’s. Indeed, I’d been quite open about my disease experience. But to write about something, you have to be willing to devote thought to the subject. This, I was unwilling to do.
Parkinson’s had already invaded and occupied too much of my consciousness. It was always with me, shadowing and coloring my every move. The lyrics of an old song seemed to fit my Parkinson’s experience. “Every step you take, every move you make, I’ll be watching you!” I’d be darned if I was going to voluntarily grant it additional dominion in my mind. But a chance encounter with a fellow Parkinson’s patient suddenly changed everything.
I’ve joked that the serendipitous encounter with then strangers, Johnny and Kathleen Morton, on a 10,000-foot elevation Taos Ski Valley trail one fateful day cost me five years of my life—three and one-half years to write Keepin’ On: Living Well with Parkinson‘s Disease and another year and one-half to get it published. Encountering unlikely fellow Parkinson’s combatants at this high altitude led us to openly share our experiences. We seemed as if kindred spirits in our determination to live full lives despite Parkinson’s disease.
In the days immediately following our encounter, I could not deny that sharing our Parkinson’s stories had been helpful both to Johnny and to me. If it had been helpful to us, perhaps sharing our stories could help others. Writing about Parkinson’s began to feel like something I had to do. It assumed the status of a moral obligation. If I had acquired some useful experience defying the conventional prediction of a Parkinson’s-dictated “grim” future existence, how could I withhold this from others? I had the necessary knowledge. I had the skill set. I had the time. I no longer had a choice in the matter. Indeed, a former teacher contends that this book is the very reason I was put on this planet. And so a five-year book gestation period began.
But let me be clear. My sudden about face had little to do with altruism. To The contrary, it was infused with self-interest. We never seem to know something quite as well as when we work to teach it to someone else. So, my ultimate calculation was that as I tried to encourage others to keep on keepin’ on, my own motivation to do so would be similarly enhanced.
Keepin’ On launched before an enthusiastic, standing-room-only audience at the Harwood Museum of Art in Taos in March 2018. Public readings followed from time to time. These literary events became occasions upon which members of our Parkinson’s community often expressed gratitude at the effort to tell their story. I was grateful that there was a responsive audience listening to my words, as these come pretty much straight from my heart.
But, responsive as audiences were, the book had difficulty gaining visibility. Keepin’ On is published by a small, independent publisher, and lacked the reach to acquire sufficient visibility.
But then came Covid, with its silver lining. I’ve half-joked that there is something good I might say for Covid. It’s had a way of leveling the participatory playing field for people with movement disorders, people like me. We have some difficulty getting around. Under current health emergency orders, the unimpaired are legally constrained from doing so. Consequently, many group offerings are streamed, and I can Zoom as well as anyone. Problem solved!
Given this “new normal” constraint on live group gatherings, Taos Poet Laureate Catherine Strisik and I decided to try a Zoomed coordinated, intertwined reading (“Parkinson’s Disease in Poetry and Prose: Up Close and Personal”) of her powerful poetry (The Mistress, 3: A Taos Press, 2017) and my personal prose. Though previous solo public readings of our words typically evoked strong feelings, the interwoven combination of our writings magnified the emotional impact of our words well beyond our expectations and prior experience. Indeed, our reading seemed less a literary event and more like some sort of de facto bibliotherapy for the Parkinson’s community.
Here’s where partnering with the Parkinson and Movement Disorder Alliance was conceived and born. The PMD Alliance leadership saw our effort as a good fit with its online series. Indeed, our joint reading was the first program (“Therapy Break™ – Up Close and Personal: Poetry and Prose with PD – Robert Silver & Catherine Strisik”) in their 2021 series. Hopefully, our partnership will continue in some form, as we commit to keep on keepin’ on and encourage our Parkinson’s comrades to do so as well.
