Dads

My steps through the sand and grass were slow and deliberate.  I held in my left hand a spinning rod and used my right hand to balance on air.  Charlie, Luke and I hired a guide to take us freshwater fishing.  We followed her, single file across a thin slice of land created by an oxbow in the Salmon River. 

I had a sensation that stopped me in my tracks.  It was my dad.  He was there walking with me, with a fly rod in his hand. 

“Charlie, dad is here”

“Of course he is here”.  Charlie replied without really thinking.  “He came here what, twice a year for as many years as I  knew him.”

“No, I mean he is really here, now”.

I had not felt his presence so strong since the day he died 8 years ago.

We followed the guide down a short bank and onto a sand spit.  I took the line in my hand, flipped over the bale and cast out.  As I reeled in my eyes caught the shiny spinner come back through the clear water. I had expected my dad to say “cast a little further out” but Dad was gone.  He had walked onto his favorite fishing spot.

 I turned to the guide.  “Do you know who owns Gustavus Lodge?”

“I do. But they are selling it.   My parents came here every year.  And when I was 15 I started coming here.  I started guiding”.

“My dad came here so often, he didn’t bother to take his boots and his raingear home”. 

“My parents left their gear here too. I wonder if they knew each other”

Mental calculations told me she had probably not met my dad.  But her parents may have.

Michelle from the Bear Track Inn came to pick us up from the fishing excursion.   

Michelle married into the Onley family.  Her husbands’ father and mother built the Inn in this beautiful meadow.  As an engineer, her father-in-law had all the necessary skills to make this place a destination in itself.  He was gone now, but  his wife Jane was still at the Inn every summer, June through September.  She hoped to leave  for the last time this fall and spend her time in Hawaii.  Michelle would be filling her spot.

Michelle and I shared short conversations as I sat in the front passenger seat. She drove us down dirt roads to get us to our activities.  I learned that her own father had died with Parkinson’s . Her closeness to him as she was growing up changed as she got older.  She didn’t understand why. She loved him dearly, and he loved her.  But when it came to his Parkinson’s, he did not share what he was experiencing.  He called for her to come home when he knew the end was near. And when he was gone from this world Michelle realized she knew very little about how he had lived with Parkinson’s.

 She watched me, and I felt she was more than observing me.  She was absorbing me, comparing me to what she saw in her dad.

Monday  morning  I had a zoom meeting with a Parkinson’s support group in San Diego.  Michelle and her mother-in-law  Jane took me to a residence on their property where I would not be disturbed.  As I set up my computer on the kitchen table, I invited them to stay and listen, and Michelle did.

I talked for about an hour.  And when I was done, I turned to Michelle.

“You were a good sport to stay and listen to all this talking about Parkinson’s disease”

She put her hand across her heart and in a soft voice she said

“I never knew all these things my dad was going through.  Your talk helped me understand how the disease affected his body, why near the end of his life he was like he was.  Thank you for sharing your story.”

I thought about my own kids.  They live so far from us that when they see me once a  year at the most, my body had changed.  Do they notice?

I don’t hide from them.  But I don’t tell them the intimacies of the disease either. 

Will they be like Michelle, somehow sorry they didn’t truly understand what neurodegenerative means.

Who holds the responsibility? The parent who suffers silently through years of the disease.  Or is it the child who doesn’t ask the questions.

Michelle drove us  by the Gustavus Inn on the way to the  airport. 

I saw a man walking on the gravel drive to the main building.  He wore a faded red sweatshirt, baggy jeans, and a floppy old fishing hat.  In one hand he had a fly rod, and in the other he held a creel.  He set the heavy basket  down and I caught a glimpse of his face.

There he was. My dad,  in his heaven… and on his face… a smile.

Author: 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 she was diagnosed with Parkinsons. Retiring from her career as a speech-language pathologist she decided to “take to the road” to battle the disease. Her 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 her to write a memoir The Ribbon of Road Ahead: One Woman’s Remarkable Journey with Parkinson’s Disease. Carol blogs about her everyday life as a middle-aged woman in the mid-stages of Parkinson’s disease. Her honest, humorous and casual narrative style brings the reader to an intimate understanding of Carol’s resilience and acceptance. Her blog, sharing the name of her 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 Carol received certification in School Leadership and Administration from Lewis and Clark College. She provided speech pathology services and was a program director for 32 years in the wide geographic expanse of eastern Oregon. Active in the Oregon Speech-Language and Hearing Association she received honors of the association and the presidential award for her work on recruitment and retention of speech and hearing professionals. Carol presented numerous papers and projects at local, state and regional professional conferences. She was appointed by Governor Ted Kulongoski to two terms of the Oregon Board of Examiners of Speech Pathology and Audiology, the state’s licencing and consumer protection agency. Since her diagnosis in 2008, Carol 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. She 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 Carol to participate in the Parkinson’s Policy Forum in Washington DC. As an attendee at the World Parkinson Congress in 2016 in Portand, Oregon, Carol presnted a poster session examining the decision making process for patients considering deep brain stimulaiton. At the 2019 WPC in Kyoto, Japan she presented a poster on vision concerns of women with PD and lead small group discussions. Her 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 she rejuvenated her voice and narrated her book. It became available as an audio book in 2021. As part of this project she 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 “Dads”

  1. I loved reading your “vision”. I can almost feel how you must have felt as you experienced it….I almost could feel MY Dad too….as he had his love of fishing…some say, sorta ruled his free-time life. Love ‘Ya. and plan to meet up in Iowa September.

  2. You didn’t mention whether you caught anything fishing. I’m sure the experience itself was a worthwhile catch. Sounded fun.
    Fred

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