Alive!

ALIVE

Autumn came too quickly.  Last week, I think it was Thursday, a heavy frost was forecast.  Charlie went outside and picked the peppers and tomatoes that were still eeking out an existence in the fading hours of sunlight…sitting in the pots and buckets that were this year’s garden.

And then, it happened.  The wind stopped. The sun came back.  With a good day in the forecast,  Jill asked me to come along to the river, where she and Anne planned a kayak outing.   Jill asked where I wanted to go.  I said “across the bridge,  down that little road by the place where the gas line goes under the water and from there we can paddle to the islands”.

By the way, in case you don’t know, Anne and Jill are two of my adventure friends.  They know how to make any activity doable for me even if I am having an especially bad day for Parkinson’s. They can put me in and take me out of the kayak and make it a funny event so I don’t need to feel bad for relying on them. Special kind of people.

The islands, if you can call them that, were a collection of rocks jutting out of the shallows near the north bank of the river.  There was some soil supporting a bit of vegetation where in the spring the pelicans laid their eggs, and herons rested their long legs while watching the tiny fish swim by.  This is how I remembered the islands.  This is what I was longing to see.

We went with the current, paddles lightly dipping in the river, no hurry.  The conversation matching the ease in which we moved downstream.

“I am heading to checkout these rocks” I said, not realizing they were what was left of the islands. It used to be such a familiar place, now it seemed strange.  The water was higher and had covered the islands, leaving just the tallest parts to show what had once been there, what I was looking forward to exploring. The pelicans had left, gone to their winter homes.  A lone blue heron flapped its giant wings and flew off, just a few feet above the glass- like river.

Scrape.  I hit a rock.  I looked down into the surprisingly clear water to see rock formations and water grasses.  These were the islands I was missing.  Submerged.  Changed.

When the pandemic is over, we will all leave our houses and go to these favorite places.  Will we find them changed, still beautiful, still alluring, but different? Is there anything that will fool us into thinking these thoughts?   Our eyes have sharpened from watching out our windows all this time.  Yet other senses are dulled from this “stay at home”  directive many of us have followed.

Today in poetry class we talked about jazz music. Music is not concrete, made of rock or engraved in a wood sign at the park.   Its fluent, moving, adaptable.  We don’t “see” music as much as we hear it, feel it, integrate it into our beings.    Our instructor Wayne, who I call the beatnik poet, is really into jazz music, especially when he can perform his poetry to the improvisation of good musicians.

He said, “sometimes I write a poem to be read at a jazz session, and I don’t read the words I’d written because different ones come from within.”  His love of jazz and poetry is witnessed by his wife Alice, who is a keen observer of how the music affects Wayne’s emotions.

Jazz is improvisation. Variations on a theme. Jazz flows. Jazz music is a magical medication for Wayne.  Jazz make Wayne come ALIVE!

In contrast I was a musician wanna be.  And when I was diagnosed with Parkinson’s I found some good musicians who took me under their wings. They taught me their style of music to be played with my guitar: blue grass, old timey, traditional acoustic. “Tunes” instead of “songs.”

There is a set pattern that is played in many of these tunes which describes my personality.  The pattern consists of chord progressions that make up the tune.  These lines of music are referenced as ‘A, B” and sometimes there is a “C”.  It may go like this: Play  A”  twice ,followed by the “B” part twice and then the last line of “A” again.

This music is one of the things that makes me feel alive. It takes me to a place of comfort: predictable patterns, knowing what is coming next. In this “knowing” comes a source of peace. I don’t have to be afraid. Although my playing is “rough”   an still keep the rhythm going. And when I get “lost” someone notices and kindly says “we’re playing “B” and from this little guidance I find my way back. The first lead player nods his head toward the next person to play the lead.   The person who kicked off the song stomps their foot or kicks it up to signal the end.  Miraculously everyone stops at once. Yep, that describes me.  Predictable, safe, reliable, knowing when I need to stop.

There is more to this freedom that I will carry from autumn to winter. On calm days we will put on our warm paddling clothes, load up the kayaks and hit the river.  I hope we are out there in the early spring when the pelicans return.  I can ride my trike as well, as I have all weather gear, or I can get on the trainer upstairs and pedal away.  If I want to do something, I will find a way.  The elements, the challenges, the mistakes made won’t stop me from living life to the fullest. If I let fear be in control, I will never be fully  ALIVE.

Autumn came too quickly.  Winter will be upon us soon.  I will keep living each day in anticipation of what will come tomorrow.

What makes you feel ALIVE?

Published by Carol Clupny, author The Ribbon of Road Ahead: One Woman's Remarkable Journey with Parkinson's Disease

I am a middle aged woman with Parkinson's Disease. When I was first diagnosed I spent a lot of time researching the disease. Seeing a video of a man in the advanced stages of the disease attempting to get out of his chair and then "freezing" as he tried to walk across the room got me off my butt and moving. Great adventures on the Camino de Santiago and with TEAM Pedaling for Parkinson's across IOWA, as well as the day to day adventures of life have lead me to writing. My first novel, a memoir, was published early 2019. It is called, you got it THE RIBBON OF ROAD AHEAD. Living with the degenerative neurological disease Parkinson's, ULTREIA is a word that guides me. I have chosen it as the name of my business ULTREIA BOOKS. It comes from Latin and old French and means "unfailing courage". In the old days, pilgrims would call "Ultreïa" to each other as encouragement "Go up, go further!" Nowadays we would say "You can do this thing". It takes courage to live with Parkinson's. May I face each day with unfailing courage. Ab Here is more about me; I was living an active lifestyle riding horses, hiking, climbing and snow skiing when at age fifty I was diagnosed with Parkinsons. Retiring from my career as a speech-language pathologist I decided to “take to the road” to battle the disease. My first steps, walking out her door to the mailbox, lead to trekking over 1000 miles of pilgrimage trails on the Camino de Santiago in France and Spain. A dusty bike discovered in the garage resulted in four rides on the Des Moines Register’s Annual Great Bike Ride Across Iowa with the Pedaling for Parkinsons Team. These adventures inspired me to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. I blogs about my everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. My honest, humorous, and casual narrative style brings the reader to an intimate understanding of my resilience and acceptance. My blog, sharing the name of my book ”The Ribbon of Road Ahead” can be found at www.ultreiablog.org After completing a Masters of Science in Speech Pathology from Eastern Washington University I received certification in School Leadership and Administration from Lewis and Clark College. I provided speech pathology services and later became a program director completing 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association I received honors of the association and the presidential award for work on recruitment and retention of speech and hearing professionals. Il presented numerous papers and projects at local, state and regional professional conferences. I was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licensing and consumer protection agency. Since my diagnosis in 2008, I has become active in the Parkinson’s community as an advocate, an Ambassador for the Davis Phinney Foundation and support group facilitator for Parkinson's Resources of Oregon. I was appointed the regional patient representative for the Parkinson's Foundation’s Women with PD TALK study. In September of 2019 the Michael J Fox Foundation selected me to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, I presnted a poster session examining the decision making process for patients considering deep brain stimulation. At the 2019 WPC in Kyoto, Japan I presented a poster on vision concerns of women with PD and lead small group discussions. Myr book The Ribbon of Road Ahead has provided many speaking opportunities for Carol. In 2019 and early 2020 she visited 24 support groups in Washington, Idaho, Oregon and California to share her thoughts on living well with the disease. In addition, she has presented talks for The Center on Aging in San Francisco, Parkinson's Place in Las Vegas, Northwest Parkinson's Foundation in Richland WA and virtually through their HOPE online program. In late 2020 I rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project I read stories over the airwaves on RadioParkies Australia with DJ Madonna and in Great Britain with DJ Johnny Parky. She and her husband Charlie have two adult sons. They live on a small hobby farm in eastern Oregon. Contact Information: Carol Clupny PO BOX 128, Hermiston, OR 97838 caclupny@gmail.com (541) 720-4256

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