Milepost Zero

It’s four o’clock on a Tuesday afternoon in September. At least I know what month it is.

My calendar tells me I am in South Africa.  I am there for three weeks. I  arrived a few days early to acclimatize.  On Sept.5 I gave a talk during a  Parkinson’s Awareness Conference.  Then we set out to walk on the Cape Camino.  I am due home Sept. 28.

Obviously this didn’t happen. Covid 19 arrived in Pandemic style and flipped the world around.

As we had planned to be away, there was nothing on the calendar.  A perfect time to travel stateside.   Charlie had a dream trip of several sites in Colorado to visit.  We kicked around the idea of when we should go..

Then we heard the news. My brother Tom had a pancreatic embolism and was critically ill in the hospital.  It would good to check in on him. Although he was sick enough, and his body kept throwing more and more at him, he was determined to get better.  For him, it was going to mean starting over, at the 0 mile marker and fighting every inch along the way.

Dooly was ready to roll.  Food and clothes packed in, the odometer set back to 0, we were off to Loveland via stops in Idaho, Utah and then to Colorado. In Colorado we spent a bit of quality time at The Colorado National Monument, The Black Canyon of the Gunnison, Manatou Springs, The Garden of the Gods, Rocky Mountain National Park. Then it was to Loveland where my big brother Tom  (2nd of my three brothers) and his wife Laurie built a home a few years back.

On that Tuesday in September, we drove to Denver to visit my friend Wayne, the beat nick poet.  We topic hopped around a hundred subjects.  It was new for him to have visitors in his home.  We were the first non-family folks to visit since the pandemic began.  I wonder if he has gotten to milepost one yet.

I had made a point of looking up people with Parkinsons in the places we visit.  Prior to Wayne, I had seen the Poetry Girls and Cidney. ..AND some of the Davis Phinney staff!  Each time I have made effort to reach out, even if it has been out of the way or an inconvenient time, I have been rewarded with gifts of immeasurable value.  Words and smiles and socially distant hugs…and a rock from Wayne.

In all these parks Charlie and I visited there were steep cliffs, deep canyons.  In the past I have been afraid of heights, or rather, afraid of falling.  I walked to the edges and looked out AND DOWN!

 

Standing on the precipice
I leaned to see just where the edge would take me
The wind came up, I closed my eyes
I heard a shout and to my surprise
A hand reached out and pulled me back to safety

What’s a hand, what’s a dream
Who can say what it means
When everything that you know
Can disappear
Don’t look back, the spirits cry
Just be glad to be alive
Everything that you love is right here
Everything that you love:

Life feels smaller than this stone
Worn smooth inside my palm
I keep it like a charm inside my pocket
I keep thinking I’ll flame out
Leave no one with a doubt
That I was meant to fire like a rocket

What’s a stone, what’s a flame
There’s always someone else to blame
When everything that you know disappears
Don’t look back the spirits cry
Just be glad to be alive
Everything that you need is right here
Everything that you need:.

Mary Chapin Carpenter

Not time for my end, so I move along towards mile marker one, where the journey takes a turn and we take the new road.

The rock, Wayne gave me. I looked at it and  I saw one face and a thousand faces. They called me … And I knew I  had to go and find the million year old rock that      had snuggled next to it, on the shore of the place when Wayne picked it up, from his place of pilgrimage.

Exit 0 is behind.  Mile marker one is still ahead.  It will be a long journey just  to get to mile one.

 

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

2 thoughts on “Milepost Zero

  1. That poem is so you…I first thought you’d written it. Keep us posted re your brother Tom. Give him our regards.
    We are safe, but sorta going stir crazy. Lucky we now have Asta of Wells Creek to keep us (me) on the run at home.
    Love to you and Charlie.

  2. Very interesting article, sounds like you had a great time in Colorado. I was born in Boulder, Colorado and its been quite a few years since my husband and i went back to visit his oldest brother and wife in Loveland. Such lovely mountains there.

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