What I wrote on Good Friday

Sharing my reflections of Good Friday:  with thoughts of Dixie Collins Hammock and Wayne A Gilbert 


Mary Chapin Carpenter lyrics 

parkinson’s still sucks but now it’s like everyone has a progressive degenerative diagnosis. that doesn’t help me feel less alone” Wayne A Gilbert 

 “I am glad I have a friend like you” wrote Dixie a few days ago.
I am too, I responded. 

Do you remember when we met? The night I called you? I will remind you because there are a few things I don’t want to forget If I write them, I won’t forget them.  I was home, alone, late at night.  I told you I lived here in Oregon which I had to teach you to pronounce. You acted like you never heard of the State of Oregon and made me convince you it existed.

You were at your home, in the countryside of Georgia a couple thousand miles away.  But as I recall, we were actually in the same place, in the city called Despair. It was dark there, with no streetlamps to light our way. We both were on the internet and discovered each other had reached out to a social media site, the one where the late night parkies hang out, hoping to find someone with a lantern to light the way to our answers.  I said, if I lived closer, I would show up at your door with a bottle of Pendleton OREGON whiskey and  two shot glasses.  We would turn up the music and dance in your living room.    We both laughed at the vision of this incredible dance party. 

I felt your hand that night, Dixie, reaching across the miles and taking mine.  And I reached back across the miles and took your other hand.  And we have been holding hands for a long time now.   I will never tire of it.” 

If you ever need to hear a voice in the middle of the night
When it seems so black outside that you can’t remember light
Ever shone on you or the ones you love in this or another lifetime
And the voice you need to hear is the true and the trusted kind
With a soft familiar rhythm in these swirling unsure times   mcc 


My world circles the sun each year.  I age away in years, 12 years since my diagnosis.  The friendship of those living close to me has thinned.  Their ranks have been strengthened by others from a distanceI have been nourished by words, poetry, writing, art, dance, humor.   

I am content, happy, and some days filled with joy.  I never used to be that way.  I was an angry youth.  I complicated my life with unhealthy relationships.  But I always had a goal.    

The anger didn’t leave me when I grew up.  And when Parkinsons came I stuffed it down inside like I had so many other things. And the anger didn’t start to go away until I knelt on a dusty road on the Camino in Spain.  And it wasn’t gone even after I broke open my heart walking in France.  Talk therapy, medication, and changing my life practices changed me.   

I am not afraid.  I am not guilty.  I am at peace. I choose joy. I change my adversities into adventures.  I keep chanting my mantra of hope.  Each day I set out to have the best day of my life. Time.  It heals.  

If you ever need some proof that time can heal your wounds
Just step inside my heart and walk around these rooms
Where the shadows used to be
You can feel as well as see how peace can hover
Now time’s been here to fix what’s broken with its power mcc 


I chatted with Wayne, the poet, the other night.  He says I was a bit of light in his darkness.  I felt a sadness for just a while when we said goodnight. I cannot heal him.  Yet,  I let some guilt slide through those open rooms in my heart.  So many of my Parkinsons friends have these dark nightsThe weariness of just having to fight so hard every day overwhelms them. Wayne has a morning routine now. He says it helps.  But then there is lunch, and the afternoon and the evening and then the sleepless nights.  Minds filled with worry and fear of so many things  

Wayne read a poem on his YouTube channel, with a dedication to me. I was touched especially by these phrases.  But I have placed my own meaning upon them. I wonder what he will think: 

i want to be the kind of person who’s trapped in a cave lights a torch figures out how to draw sacred figures on the walls 

You are enough Wayne Your sacredness is your own.” Can you hear my soft voice scream this?  


i want to make something more beautiful than words  

Don’t you love your words? Are they not beautiful enough? Why would you desire to make something better than your gift of wordsYour words convey the truth of meaning.   Semantic connections, pragmatic collaboration, morphological markers, syntaxThe symbols combine to create the language, the beauty of culture. 


i wish i could be calm even-tempered easy-going upbeat 

In musical terms, the upbeat is an unaccented beat preceding an accented beat, usually the last beat in the measure.  Not what you meant? I think you do understand.  It takes self wisdom. Strive to understand “why” you are not what you wish.  When you have gained that understanding don’t accent it anymore. Live with it.  


My heart-broken-open is clean.  The windows thrown open are still letting the light in.  It’s a glorious world.  Open yourselves to see it.  




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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