Hearing the Church Bells Ring

I stood outside the church door, leaning on the handrail of the ramp.  The silver hearse was parked at the curb and pick-ups and cars were lining up behind to follow it to the cemetery.  I watched as a Volkswagen sedan zipped ahead. A red blinking light attached to the roof alerted me that this was our pastor’s car. (I knew this because I had ridden with him one time) My attention was focused on that unusual light when my eye caught the blue flashers of a police patrol car waiting at the corner to escort the procession of mourners. This wonderful tradition still existed in our small town.   The hearse pulled away from the curb and the church bells, as if on cue started ringing a slow cadence.    Completely alone now, I took off my mask. As the hearse made it to the street the bells sounded, no, heralded the announcement of a heavenly celebration. I was so caught up in the beauty of the moment, tears seeped out of my eyes and down my face.  Without the mask there to catch the tears I could feel them. It is so natural to cry for the loss, but it was an unexpected response to beauty of bells ringing.  I took the tears as a sign …a sign that I was still alive. (sometimes I wondered if I was just bones and skin existing in a pandemic world)

Ernie had left us, yes but had arrived at his destination now and was being welcomed. The bells I heard were echoes resounding from the heavens, I am sure of it. 

Oh Ernie, you suffered so much.  As if a diagnosis of Parkinsons was not enough, you had to get cancer, too.

 I feel a bit sad that I didn’t know Ernie better.  He attended our monthly support group from the very first meeting, unless it was a great day to out to the shooting range. When we are finally allowed to return to the bowling alley meeting room I will look to the spot where he sat.  I will envision his face and especially his smile.  I will hear Donna’s voice.  She was his wife of nearly 60 years.  She came to the meetings even when Ernie couldn’t and was always welcoming, encouraging and comforting.    Donna, I wish I could do something to comfort you now.

Death is inevitable.  Yeppers, but we all have time. 

Yes…We all have time.  Even if it is time of the measured kind, in hours, weeks, months or maybe a couple of years.  There is time, really.

Time to get to know those folks who sit at the same place and order the same lunch on the first Monday of the month at noon… to know them more than just their names..to know what they remember and hope and dream for when they sit alone, listening to that annoying wall clock ticking away the time. 

Time to watch the neighbor’s kids for a few minutes (while they are napping of course) so their mom can catch her breath…and listen to the oldest one sound out words while doing her reading homework. 

Time to pick up the phone and call the brothers and sisters you haven’t talked to in years to say “Hey, do you remember that time…”

How much time does it take to say that “remember when” or “I am sorry,” or “I know it’s been a long time but I want to tell you I love you”

 Ernie’s body may have worn out, but his soul goes on living.

I know it. Look what he did for me today…his “going” made an occasion for those bells to ring.  And the bells ringing made me cry.  And the tears running down my face made me feel alive.  And feeling alive made me realize that since I have time, measured or not, I can do something positive, no matter how small.  And if I do something positive, especially when it’s really hard for me to think happy thoughts or even to physically move to act on them, I will have lived my best day ever (so far).

Thanks Ernie. You were an incredible human being. You used your time well.

I can only hope that the same will be said about me.

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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