What is a superhero?
I was moved to tears recently. That is not an every day occurrence.
For the last year, I have participated in a Parkinson’s disease research cohort titled Day One: PD Superheroes.
Brilliantly led by doctoral student and film maker Robert Cochrane out of Las Vegas, Nevada, about 20 people from around the world with Parkinson’s disease took Robert’s weekly guidance over Zoom.
We were encouraged to think of ourselves as superheroes. We even had the opportunity to draw our costumes. (I still can’t decide what mine should look like LOL.)
We studied the Hero’s Journey, modeled by the story arc in the movie Star Wars. We got to watch movie clips; that was fun.
We also had writing assignments. I thought: No problem. I’m a writer. … Yet I found myself challenged.
What is my story arc? What is my Death Star? How do I defeat it? Then what?
I am also a self-conscious introvert. I don’t do anything that resembles performing without a ton of preparation, and often I avoid it altogether.
A cornerstone of this program? Improv. Improv!
It also included rapping and beat boxing. Oh, no way I can do that. … I mostly listen to country music and I can’t do an impromptu anything. But as a group, we showed up and we trusted each other and we tried … and we did everything that was put before us.
Every week we started our sessions with movement and improv. We learned concepts and we heard from guest speakers: experts on movement and singing and speaking with intent and adaptive options and various creative outlets.
Each session gave us a new tool for our superhero utility belts. Each session challenged us to reflect on our individual journeys, and to see ourselves as the hero in our story.
People created songs and poems and drawings and videos. All of it was WONDERFUL!
We recently presented our experience via a webinar. The audience included those who have been part of our journeys and representatives from Parkinson’s organizations that fund research like this.
It is impossible to truly share this journey in less than two hours, though the result was MAGICAL.
Robert masterfully wove together clips from our dozens of Zoom sessions and our recorded reflections on them. People shared their creations. We performed a live line dance—one of the tools we were taught. We sang an original song: We Are Day One, to the tune of We Are the World.
… And I cried. I can’t articulate exactly why. It was a bit of a foreign feeling.
Leading up to the webinar, I wasn’t concerned about our collective performance. We’re not singers and we’re not dancers, and who cares? I did worry about how my voice sounded and how I looked on video. (I recorded my pre-prepared portion of the song about 20 times before I submitted it—wrong pitch, bad lighting, don’t like the video background, I look tired, etc.)
And then I got past all that and I was present for the telling of our group story, and I was SO MOVED.
I have said more than once that since my young-onset Parkinson’s diagnosis, I have gained community and had adventures that probably wouldn’t have happened otherwise.
As part of the Day One: PD Superheroes cohort, my community has grown and I have definitely had new adventures. Thank you to all who have been part of that.
Photo by Michelle Cassar on Unsplash
