Words and Illustration by Connie Carpenter Phinney
I’ve been married for 34 years. Parkinson’s fell into our life and smack dab into our relationship after we had been married for 17. We have spent exactly half of our married life with Parkinson’s in the mix.
Parkinson’s arrived like an unwanted guest. We had no idea at the time of diagnosis how the decades would unfold, but we knew the guest was in it for the long run.
As time progressed we began to understand and respect its nature. It was an odd bedfellow – making sleep difficult and dreams come alive. It wouldn’t stay put in the guest room but seemed more content to disrupt our lives while we gallantly and not always gracefully forged ahead.
The guest did come bearing gifts, of a sort. We are thankful that the unwanted guest forced us to correct the busy-ness of our lives together and to focus more on our family.
At the time of my husband’s diagnosis, we ran a bike camp and our motto was Enjoy Life. We stayed grounded in one word: Yes! We needed this optimism to accept the diagnosis, but we cultivated optimism energetically and resisted pessimism with all of our combined strength.
Our kids were young when he was diagnosed, and they kept us tethered to the present. They allowed us to concentrate on the family in the here and now. Doing that gave us the hope that we could be content, even with the changes that this unwanted guest caused. We found an ease, in the disease. This point of view helped us to chart our course and navigate very unfamiliar terrain.
Please don’t misunderstand me, I did NOT say easy. Not much of this has been easy.
We have steadfastly cultivated happiness in our lives despite the challenges. We have learned to accept the “isness” – as in, it is what it is. We’ve lowered expectations, reduced our load and focused more on quality than quantity. These are practices that MOST of us should adopt, but it was Parkinson’s – that unwanted guest – that forced us down this path.
Through it all, we have found our secret sauce. It started with hopefulness, honesty and trust. It continued with humor, devotion and forgiveness. It’s lasted because we truly care about each other and enjoy each other. Trust has allowed us to rewrite how we engage with each other. Our genuine affection enables us to get on each other’s wavelength (and for the most part, not on each other’s nerves). As optimists, we’re wired to seek goodness and to be hopeful. To enjoy life.
There’s a fine and tenuous line between giving in and giving up. Giving in to Parkinson’s has allowed both of us to acknowledge the unwanted guest who we don’t particularly like but are by now quite used to. We’ve found spaciousness in our more simplified life. Giving up wasn’t – isn’t – an option. There’s too much to do and see and love in this world.
We have common interests that we’ve nurtured both together and apart. We share a love for beauty and find rapture in so many common daily events – sunsets, the light on the water, the open sky, a soaring hawk. We follow – and do – many sports together. We spend a lot of quality time with our adult kids. We enjoy great coffee, good food, fine wine, movies and a close circle of understanding friends. But more than anything, we enjoy each other’s company. Events that Davis now calls victories, I would simply call living well. Making good choices to live well, to be more specific.
I hope this essay might help you to reflect on your own relationship – with each other and with that unwanted guest – Parkinson’s. And perhaps write down what you value, or more specifically what are your values? What do you value in each other? And how do you choose to live well with Parkinson’s — and each other? It might also help to reveal where your relationship needs work or help.
It’s never too late to cultivate happiness. Cultivation requires attention and constant nurturing – it’s not a passive activity. It may sound trivial — but happiness is contagious and a key ingredient in any long and happy marriage.
Learn More About How Parkinson’s Affects Families & Relationships
Much more can be found in a powerful new edition of Davis Phinney Foundation’s free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinson’s and the family along with tools care partners may find useful along their caregiving journey.
It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.
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