Three years ago, I attended my first World Parkinson’s Congress (WPC) in Portland, Oregon. It went by in a blur. I had been recently diagnosed and I could barely take it in, but many things left an impression. Like the hallway displaying larger-than-life photographs of faces of people living with Parkinson’s. The wellness events filled with dancing and music. The plenaries and keynote speakers. Most of all, I remember the fellowship I felt from being surrounded by so many people with Parkinson’s.
Fast forward to the WPC 2019 in Kyoto. This time, I was giving a presentation with my dear friend Kat Hill that we titled “Resilience after a Diagnosis,” and we were traveling with a small community of friends from Portland. I knew that the trip would hold surprises that no amount of planning would cover — and that traveling was going to take some stamina.
When we first started planning, a photograph of bright reddish gates — called torii — at the Fushimi Inari shrine in Kyoto caught Kat’s and my imaginations. The gates seem to shimmer, catching the sunlight and rippling as if they were fabric instead of wood. Kat and I used the image of the beautiful torii at the end of a short video called Just Imagine that we made for the WPC 19 video contest.
“When we were young,” Kat and I expressed in the video, “we never imagined that we would travel the world” to attend an event like the WPC 19.
Once again, I came away from the conference with lasting impressions. I learned about current research on pluripotent stem cells, and the GI tract and gut microbiome, and I felt I had a valuable voice in the conversation as a person living with Parkinson’s Disease. I helped facilitate the well-received World Cafe conversations and exchanged ideas with people from Europe and Australia and Japan. One night, I went to hear sweet music performed by a Japanese folk singer, a Portland friend with Parkinson’s and her guitar-playing neurologist, and for the finale, the audience flooded the stage with appreciation.
WPC 19 changed my relationship with Parkinson’s Disease. I’m no longer just a person living with it. I’m eager to move into a larger advocacy role. The Congress opened doors for me and renewed my hope.
Like door ways, the torii gates are said to mark the transition from the mundane to the revered. Once the Congress was over, Kat and I wanted to visit the shrine that had so inspired us. Seeing the torii was to become a high point of a trip marked with many high points.
Even though we arrived early in the day, it wasn’t just us walking up the first steps at the Fushimi Inari shrine. There were hundreds and hundreds of visitors. We started climbing in lock-step with the crowd. There were young and old visitors, families, individuals, observant Buddhists, irreverent Americans. Occasionally someone posed for a photograph and the whole procession would stop.
Earlier, I had read that Fushimi Inari Shrine had 10,000 torii gates. We learned the hard way that there are actually over 32,000 torii gates and over 50 flights of stairs. Even when it appears that you have reached the top of the stairs, there are more to climb.
The lessons that I learned from all the unexpected stairs at the shrine were similar to the lessons I learned by attending the Congress. There’s so much we are trying to understand about Parkinson’s Disease. The more we learn through research and study, the more possibilities we have to reduce symptoms or discover a new medicine or — knock on wood, find a cure — and still there are new complications and surprises.
It took us more than two hours to reach the top of the Fushimi Inari Shrine. By then, the crowd had disappeared, leaving hardly anyone except Kat and me — two women with Parkinson’s — and our spouses and friends. We knew the path still held surprises and would likely tap all our energy. So we did what people do every day: we put one foot forward, and then the next. And we were amazed and thankful to do so.
— Arigato gozaimasu (thank you for reading).