What was left behind

I thought I had walked it off, sweated it through, washed it out with liters of water and cold mugs of beer. I thought I had talked about it until there was nothing left to say. And when I thought it was done, when I thought I was done, my walking partners true and honest comments caused me to pause…because they stung. She could clearly see what I could not.  Thinking I had left my anger and sadness on the meseta in Spain when I was taken down to my knees on that hot dusty afternoon.  I was wrong, there was still something of it left in me.  She saw it when I first started to talk, but she did not interrupt, listening intently as I told the stories of what used to be me.  The me before the disease and the me that I had become,  what the medicine did to me, why I started to write.  Then she spoke those burning truthful words that caused me to realize that if I wanted to survive, I needed to change.

Her exact words etched in my heart, the remnants of the carvings then  blew away in the wind, landing somewhere on the Camino. Somewhere amongst the millions upon millions of words now embedded in the footpath, tread upon by thousands of pilgrims, rising up in the dust of their feet…like the smoke of burning incense from the botefumiero, lifting the burden of sins and  prayers  The Camino knows the stories, told over and over, none new.

These past weeks have been busy with travels. Metal and rubber hit the pavement instead of the vibram soles of my boots. The scenery flies by, only a  bit of the sky is visible through the oversized windshield of our van.  It’s too fast. I cannot see the wide expanse of the blue sky, or smell the new greeness on the hillside. There are no words left here on the pavement to remind me of the choices I made. I can only recall from the fragments left on my heart.  They aren’t broken, pieces just fell away.

I chose to live well.  That is obvious. But did I choose to love well?  Can I love an old friend enough to let her live well without me interfering in her life? Can I love a new friend well enough that she feels my caring presence beside her when I am miles away? Can the individuals in these groups I speak to see how much I love them when I don’t even  know each of their names? Do the two young men with whom I share a last  name with know how much I love them? Does the man I chose to spend my life with understand this changing love from the point of a disease I did not choose?

Today I had an “ahah” moment.  Because I held some of it in me, because the winds on the Camino did not blow away onto the paths of future pilgrims.

I haven’t loved enough.

Yet I know I haven’t failed, there is still time.

….from an unexpected place this prayer came back to me. Thank you Thank you for reminding me that you are surrounded and protected as well as I am, you who I love.

Christ be with me

Christ before me

Christ behind me

Christ in me

Christ beneath me

Christ above me

Christ on my right

Christ on my left

Christ where I lie

Christ where I sit

Christ in every eye that sees me

Christ in every ear that hears me

 

 

 

 

 

 

 

 

 

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

3 thoughts on “What was left behind

  1. Carol…..I cant wait to meet you in Cape Town!!
    You write so well – honest, open and to the point.
    Thanks for the sharing the above blog…..
    I agree wholeheartedly that living with a chronic disease changes one’s outlook on Life big time…..
    Wishing you continued success with your adventures around America spreading your positive energy, love for others and knowledge about Parkinsons Disease.
    I salute you and Charlie!! Shot…..well done!!

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