What a whirlwind! June 4 – 7 was the Fifth World Parkinson’s Congress in Kyoto, Japan. Nearly 3,000 people gathered to hear about the latest research about Parkinson’s disease and hear from some of us living with the disease. I was incredibly honored to present with my friend, Nancy Peate, a talk about Resilience. A robust group of us from Portland attended the conference. I will never forget looking out into the audience and seeing so many familiar faces in a county thousands of miles from home.
My dream of presenting to an international audience was realized.
We shared our stories and a how we live with a progressive, incurable brain disease and how we find gratitude and joy. No big secrets were revealed but we shared a philosophy that is working for us and others were eager to hear our message. It felt powerful to speak the words to people from around the world.
It was a remarkable feeling to have people seek us out. Some had seen a video we submitted to the Congress and wanted to learn more about our stories. One couple came to our talk then attended our round table to learn more about our stories. Another woman from Australia had been a midwife and whose story is similar to mine. We became fast friends, are keeping in touch and making plans for 2022.
Nancy and I also had the chance to host World Café discussions as well as a round table. I found these to be a highlight of the conference. To have discussions in small groups about topics relevant to us with others who share our diagnosis and many of our challenges felt powerful. We discussed questions pertinent to navigating life with a diagnosis and how we might change our dialogue with ourselves, our communities and our health care providers.
Taking full advantage of our travels, we explored Kyoto. I found the city to be filled with kind and extremely polite people. It is also a city full of spiritual nooks to reflect and worship. I have visited no less than 10 shrines and temples. A group of us hiked a mountain under thousands of vermillion torii gates. We climbed over 50 stories of stairs and roughly 4.5 miles in heat and humidity. It was a long and challenging hike which allowed for some introspective moments.
I realized that I am deeply grateful. Grateful to be alive, to have friends and family that love me. I am grateful that I have had the opportunity to meet so many strong people from around the world. I am grateful that I have a message that others share.
Another reflection was about one of the lectures I attended at the congress. I have been needing to slow my pace down and take inventory of all the things I am saying “yes” to. The speaker suggested making a TO BE list, not a TO DO list. I loved this. Like so many of us, I have spent a lifetime with to do lists. My new goal is…
to BE more and to DO less.
It is necessary with Parkinson’s to listen to my body’s need for rest and balance it with intensive exercise. Many days this may be enough, just being is enough.
My time in this beautiful city afforded many moments of stillness spent sketching or observing others. Stillness, being, is important and I will work to find more of this in my everyday life at home. If so many in the Japanese culture can integrate worship and reflection into their everyday lives, certainly this Western woman can find some ways to find more stillness.
I also know that I will continue to work on my message. We hope to be invited again to the 6thWorld Parkinson’s Congress in Barcelona in June 2022. My partner and I may even start drafting a book about our experiences.
Who knows what the future holds, but the now is full of wonder and gratitude.