The Ribbon of Road Ahead

In January of 2020, I was preparing for a great road trip. Charlie had our Coachman Crossfit camper van, Dooley, mechanically ready for our journey. I had arranged for 12 speaking engagements along the way and figured out how to get to each location and where we would stay at night. We packed healthy food and a couple bottles of red wine. Two sets of dress up clothes were hung up in the closet, and my baseball caps, Wranglers and sweatshirts in the cupboards. And the gas tank was filled, not with regular, but with super premium.

Ready to go, we waved goodbye to house and dog and said a prayer of protection for our travels. Charlie drove the van out onto the paved lane that goes by our house and shut the gate behind us. Ready? Really? Physically maybe. I was unsure about the speaking part. I prepared a bunch of slides to illustrate my talk. The content had been written out over and over again and finalized in size 20 bold font in a small three ring binder. I knew after an impromptu presentation to two ladies in the knitting club who were kind enough to stay and hear me talk at the bookstore in tiny Haines, Oregon what needed to happen. They were genuinely interested in me, a stranger who pulled into their town in a shiny new van . The slides and that fancy stuff were not necessary. And because of this first unplanned experience in telling my story, I started to think about speaking events differently. By the last presentation a month later, I got it down to just a smattering of slides and one great dance song. And I talked about me.

I talked about apathy and depression. I hoped to inspire my audiences to turn these challenging symptoms of Parkinson’s into tiny little adventures to be completed one by one, starting as small as changing chairs, or stepping outside the door; anything that the individual chose to do and the Parkinson’s didn’t. The control of mind and body over Parkinsons could then grow into larger tasks and accomplishments. After giving examples of how we people with Parkinson could “take a bad hand of cards and play them well” and turn “every challenge into an adventure”, I concluded by wishing them the “best day of their life”…and that every day could be the best day of their life…so far.

I have definitely had some of the best days of my life so far during this pandemic. Dooley has taken Charlie and I on 3 more road trips and we have met people and been to places I only knew virtually. I have written and drawn and played music and rode my trike in the mountains, at the beach and in the forest.

I have also had some rough days, but they have not been the worst days of my life. These downer days have come from loss. We could write pages and pages of what was lost during the pandemic. what has me thinking this day is the loss of people. We lost Charlies sister, Cece in March. Four friends who had been battling Parkinsons have passed away. Two friends died with Covid-19. And we didn’t really get to properly say goodbye to any of them.

But then yesterday Susan called to tell me that Mick was gone. Suddenly, loss was no longer acceptable. With Susan at his side, Mick had fought Parkinsons as well as other health problems. He was diagnosed around the same time I was. Why am I still here?

Is it because I am given more time, more opportunities to have that “best day ever”

A great need has arisen in me. Bet you can’t guess . That is to practice what I preached during those talks last year.

Have the best day ever.

What does it mean to me. It means to do my best. To give my best. Not being sucked up by apathy and blame my lack of action (or motion) on that. I will work against that cement that surrounds my feet as I try to walk in the morning. I will work on balance so I can stand up tall. I will work on breathing and speech. I will work on getting out of a chair, out of the car, up off the floor. I will climb the stairs, fold the laundry, do the dishes, cook some meals. These activities of daily living are what I can do keep myself active and my care partner less burdened.

Each day will be better than the last. That will make today the best.

The best day ever…so far.