Move to the light….

In darkness
Its dark.  The moments I am in light are slipping away. Daylight all around me, I wake up in darkness and go to sleep in darkness.

The state of our world pulls me away from the light.  The treatment of our fellow human beings, those refugees who desire basic human rights; classification of all Muslims as evil threats to our nation; the exploitation of  God’s temple of the human body through sex trafficking,  music and media; disrespect for elders, teachers, law enforcement, parents, each other.

The disease that entered  my body 8, 9 , 10 , 12 years ago….It affects how I respond to the darkness around me.  And it invades my being and dims the light within.  At times I am  trapped, unable to respond to the darkness, to create light in my own heart.  I want to take action.  The body does not move.  I want to fully partake in the communion of my church, but I struggle to reach the altar rail.  I want to play music, sing praises, acclaim the power of God within me.  I cannot strum, I cannot sing, I have no voice.  My affect is flat. 

Pain has me spiraling down.  Continuous pain.  My body does not sit still even for the pain.  I weave and move and shake.  Tears stream down my cheeks and I don’t know why.  I cannot control them. Reaching out for comfort I travel paths beaten down by lack of healing and continued heartbreak.  My paths take me to the refrigerator, the liquor closet, the internet, to past relationships with family,friends and lovers of 40 years ago…to memories of  places where my strength and health abided….where I ran and played and rode and threw and hit and caught and raced.

Entering the tunnel

Charlie and I took young Loren and Luke on a bicycling adventure to the Hiawatha Trail in northern Idaho.  This 15 mile trail is reclaimed from the  railbed of the Hiawatha, a passenger train that traveled from the Pacific Northwest to the Midwest in the day of passenger trains.  I had actually ridden the Hiawatha train with my dad on a visit to family in Iowa when I was a little girl.  I have vivid memories of that train ride and still tell stories today of how I ordered my eggs in the dining car and how we sat on the track for hours after a collision with a farm implement.

We slept in our camper the night before the bike ride and then drove into the forest to find the trailhead.
Loren was old enough to ride his bike. We rented a tag-a-long for Luke which attached to Charlie’s bike frame.  Luke had handle bars, a seat and pedals all his own.  We knew we needed lights as the ride starts at a very long tunnel.  However WE WERE NOT PREPARED for what was ahead.  We didn’t think of having  tail lights and we had only two head lights which were mounted on the bikes of Charlie and Loren.  I followed the sliver of light in front of Loren as best as I could.  It was pitch black in the tunnel.  My equilibrium was messed up.  I couldn’t keep straight.  I rode my bike into the gutter.  I got soaked by unseen waterfalls.  I was frightened.  I knew I needed to keep going or I would lose the sliver of light that was Loren.  But I wanted to stop and get off my bike.  I was ready to seek refuge in the gutter and shiver in the dripping water.

Finding the light
And then I saw it.  A tiny light.  I was so glad.  I knew that this one light bulb lead to another light bulb and soon the string of lights would get me out of the tunnel.

Hmm.  This totally is what happened these past few weeks.  I got sucked into the darkness. I WAS  NOT PREPARED!  The dark days, the darkness of our world, the dark sadness of those around me, my own darkness pulled me down…down to the gutter of this dark seemingly endless tunnel. 

But a light came into the darkness. It was a tiny light, but it grew.  I saw it over a manger, guiding peoples of all nations, faiths, beliefs and orientations. Travelers throughout the ages. And it reminded me of the string of light I must allow myself to follow. My inner light is of Christ and the Holy Spirit placed there by the Father.  In the sacramentals there is always a strong symbol of light that illuminates all darkness.

To prepare oneself, to always be ready, to go into automatic mode when the situation arises.  Practice.  When you practice that riff of the guitar over and over a million times,  when you are on stage and excited and nervous you can play it.  When you practice catching the throw into home, when the runner is coming in you can catch it and tag her out. When you practice prayers and praying and meditating when you need to pray you know how.  When you practice healthy eating habits and  you are tempted by sodas and cookies and candy and cake, they don’t taste good to you any more.  When you practice patterns of movement and strengthen your body you will get up
from your fall when no one is there to help you.  When you keep your mind alert you will   plan appropriately for the event  and see the  obstacles   you need to avoid. These are my head lights (and of course tail lights) to keep me prepared for the next dark tunnel

We came out of the long tunnel into the blazing sunlight of a September afternoon. We were blinded by the brilliance we saw and had to collect ourselves and recall what we had just experienced before we rode on down the trail..  Like I am doing in this post.  I was in a place of suffering from my disease which I allowed to bring me to a dark place. Now I pause to recollect:
I came out of this recent darkness by picking up the guitar, remembering the outs  I tagged at  home and the basketball game where I hit 4 three pointers in a row, reaching for carrots and water instead of pop or candy, receiving the sacraments of my church and reciting the ancient prayers, going to work out, riding my bike, walking, connecting with friends…following this chain of lights.

                                                                  And I have to keep ready. 

First DBS evaluation
Monday December 14 10 am
ENT  Dept. Speech Evaluation
Center for Health and Healing

 The oil in the lamp burned 7 days for the Macabees.  They did not let that light go out. 

PS  That light I saw, it wasn’t really  a chain of light bulbs.  It was the light streaming into the tunnel at the other end.

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 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

One thought on “Move to the light….

  1. You are a brave, strong and beautiful child of God. Thank you for allowing me to be a part of your journey.

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