On the way to Nagasaki

On the way to Nagisaki

If you could make someone’s wish come true, wouldn’t you do it? And what if, in your efforts to do it, it became your wish also? What would you say? What if this wish changed you from tourist to pilgim?

BakerDioceseYouthLeadershipCamp people: Do you have this memory from Camp White Branch: coming out of your afternoon workshops and seeing 26 crosses out in the meadow that had not been there that morning? And what especially moved you about these crosses? Was it that they had belongings of your fellow campers draped over them. Andy’s tshirt, Mike’s towel, a baseball cap, a scarf, a pair of flip flops. I remember this like yesterday. I remember my eyes stung with tears at this makeshift memorial to the Nagasaki Christians who were

martyred in 1597 by the Shogun. I didn’t know anything about the event until that day. It became real to me. These Catholics believed in life and even into death that Jesus Christ was their Lord.

When I think of all the special times we shared at BDYLC over the years this one comes to mind as very precious.

Who put those crosses out in the meadow? Charlie Clupny and Andy Colvin. Charlie and a teenaged Andy who, with the assistance of the camp host collected the wood and dug the holes and planted the crosses and nailed the cross members. Andy grew up to become a marine chaplain serving in the Pacific, and I believe was even stationed Nagasaki. And Charlie made it there. It is not me who had the wish to go to Nagasaki. I thought the travel time of five hours would have been beter spent sightseeing in Kyoto. But Charlie had this wish. It was the first thing that mind when he thought of KYOTO.

And when we started planning to attend the World Parkinsons Congress in after attending the one Portland three years ago I asked Charlie where else he wanted to visit. He replied Nagasaki. It didnt matter that Nagasaki was half of Japan away. What mattered was Charlie had a wish. And because I could help make it happen, it became my wish too.

Tonight we climbed a steep hill to a memorial to these martyrs. There we met a Japanese woman named Hisako who now lives in Seattle. She told us how the Christians were persecuted, and they went underground and hid a very vibrant Christian community for 200 years. We spent an hour with this Japanese woman and felt like best friends; friendship initiated because Charlie had a wish. We stepped away from tourist mode and became like this

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

Please comment. I love to hear your thoughts!

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: