Envisioning a Space Where Artists with Parkinson’s Can Share Their Creativity - PMD Alliance

Parkinson’s: A New Frontier 

Getting diagnosed with Parkinson’s is like crossing into new terrain. For some, they come face to face with their own mortality or vulnerability. For others, the pulse of life quickens – fear, uncertainty, sadness, and hope awaken at once: this is a threshold. As the poet John O’Donohue wrote, a threshold “cannot be crossed without the heart being passionately engaged and woken up,” and crossing requires deep listening and “complete attention” to discern the way. 

It seems that Christopher Lion, who was diagnosed with Parkinson’s almost four years ago, believes in the magic of the threshold, even when the threshold is unbidden. “There is a body of research in cognitive science,” he writes, “suggesting that the onset of Parkinson’s may produce a creative impulse…There is no question that to be reminded of one’s mortality is sobering and can drive one to look for ways to process the grief and other profound emotions they may be feeling.”  

But to Christopher, this shift, this unexpected kindling of creativity, is more than a scientific or existential response: “For some special few,” he writes, “there is something more mysterious and magical at work. Some become filled with a creative impulse that seeks an outlet and, when expressed, helps soothes them. For those few,” he says, “art becomes integral to their lives in ways they never thought possible before.”  

It comes upon them: an awakening. They have no choice but to see the world through new eyes.  

Returning to His First Love 

Christopher Lion has spent most of his professional life in a diverse business career, including executive roles in two wealth management firms, a fact that surprised me after hearing the poetry of his voice and the way he serenaded beloved poets with his words throughout our first phone call. Since getting diagnosed with PD three years ago, he told me, “I’m becoming more of all the things I like about myself, and less of all the things I don’t. I’m becoming more caring, more giving, more affectionate.”  

When he was first grappling with his diagnosis, a friend, Allan Cole, a professor and social work scholar who has made it his mission to connect to the Parkinson’s community through stories after getting diagnosed with PD himself, encouraged Christopher to write essays. After experimenting with that for a while, he decided to return to his first love, poetry.  

What birthed from there in early 2021 is TheQuiver.org, a website that gathers and uplifts the artwork, written and visual, of people with Parkinson’s. “The site is a celebration of human creativity,” Christopher told me, “a tribute to those who thrive despite setbacks.” It embodies inspiration and possibility – a reminder that as long as we are here on this earth, we are co-creators, able to give life to the art, words, and wisdom within us.  

Embracing the World-Opening Power of Connection 

Perhaps what has moved Christopher the most in the process of building TheQuiver.org is the way he’s been graced with connections. “It’s been a wonderful experience talking with some of these artists,” he said. “What adds special poignancy to these connections is that many of these artists are creating really astonishing works of art, whether it’s painting, poetry, photography, essays or other artistic domain.” He truly believes in creating a community platform where all are invited and can find belonging, which is why he welcomes submissions from anyone with PD.  

Discovering and connecting with each of these artists has deeply impacted Christopher. Nearly a decade after a memoirist with Parkinson’s shared her story in a book, Christopher went searching for her. “She was in a nursing home when I found her,” he told me. “She was so touched and moved that I reached out to her,” wanting to share in and feature her work.  

Christopher told me, “I said to her, ‘Would you like me to read some of your poems back to you?’” She agreed and Christopher said it moved both of them. As a writer myself, I knew how beautiful that natural impulse of his was, the impulse to let her hear her own words spoken with tenderness through his voice, to get to listen to someone else delight in her creation.  

“So many people tell me,” Christopher went on, “You reached out to me at just the right time.” It’s as if Christopher’s call, inviting them to share their art, finds them when they most need a boost, impacting not only everyone who gets to discover their creations on TheQuiver.org, but the creators themselves. This – connection that reminds us of our own loveliness – is the true essence of art.  

Anointing the Site: A Title Steeped in Meaning 

Christopher’s site is named for the triple meaning of the word “quiver.” “It is a tremor,” he told me, a nod to the classic Parkinson’s motor symptom. It is also a container that holds arrows because the site is a collection of art that “pierces to the heart,” drawing us beyond Parkinson’s and into a greater human communion. And, lastly, because it represents a “slight trembling movement caused by a sudden strong emotion.” It is art that, when we share in it, it moves us. We, too, are awakened. 

Reimagining Purpose: How Do You Want to Live? 

Today, Christopher finds himself dancing with the question the poet Mary Oliver asked, reframed in one of his poems as: “What with your one precious life would you do?” Christopher is choosing to reimagine and reorient his life around the arts. “I’m just a person now who wants to be a positive force. I just want to be a force for good, for joy and happiness in my little corner of the world.” 

He is remembering Love, the essence of why we are here and, through his remembering, reminding each of us to “take a moment and ask yourself: how do you want to participate in the world?” No matter what, he says, “just do something, just participate.” 

The awakening pulse of the world beckons to us: “Don’t wait.” 

Listen to Christopher read his poem "Laredo on Range" and then check out TheQuiver.org.

Leave a Reply