Christmas Eve

We knew it would happen. It still came as a shock when it did: Christmas at home by ourselves. We went to a 4 pm Mass and ate a humble dinner.

I will admit that I have not been attending Mass regularly at Our Lady of Angels Catholic Church in Hermiston. A pandemic of lengthy portion has kept me out of any place that is a collecting basin for people. I watched Mass on TV some Sundays. I looked for different locations to “distance worship.” Discovering Mass broadcast from the Vatican, Eternal Word Network and the military chaplaincy … I even came across Fr. Andrew Colvin (local Oregonian) broadcasting Mass from a small room decorated with icons at a military base.

The prospect of catching Covid-19 was only one of the reasons this cradle Catholic wasn’t going to mass in person. Other influences that caused my absence included the primary and non-motor symptoms of Parkinsons Disease from which I have been “living well with for fourteen years.”

The primary symptoms I experienced when not undergoing medical treatment include stiffness, small uncoordinated steps, balance issues and tremor.

Slow and stiff body movements have increased the amount of time I need to get showered and dressed from a reasonable 30 minutes to 45 minutes and sometimes even 60 minutes. Spending this much time getting dressed takes the energy out of me. I am worn out before it is even time to leave.

Growing up, my family attended the midnight Mass. We had to go early then as my oldest brothers and my sister were in the choir. I think back upon those beautiful liturgies, missing the incense and the bells. Now its difficult for me to attend due to the needed time and energy. It takes a day or two for me to recover from such energy exerting events. But I want to go. So for Christmas 2021, I started at 1pm and was dressed in time to go early to the 4 pm mass. In Christmas’s past this has been a children’s Mass, with a packed church and a live nativity pageant. When we arrived, it felt (and smelled) different. Where was the goat? The burro? The camels? (no Carol, just no).

With all this going on the parking lot would be full. This is why went early, just in case. The church was beautifully decorated inside with trees, poinsettias and manger scenes.

We sat down in the front row just as a group of juvenile shepherds, pint sized angels and a Mary and Joseph arrived on the scene. There were some royal looking individuals on the far side of the altar. In place of wooly sheep, a drum, blankets and brightly colored presents each of the guests carried a script and a microphone. With a signal from their leader they alternately read a piece of the Christmas story.

Sitting beside me was the mom of one of the participants. She looked over to me and proudly whispered “My child is an angel.”(not at home, I thought) The little drummer boy rested his elbow on Joseph’s back and yawned. The sheepless shepherd dropped his flashlight on the baby Jesus. The students invited the congregation to sing as they gathered up their props and filed down the middle of the church.

Doris, the retired organist, cranked up the volume and the priest Fr Maxwell sang along at the top of the lungs with the choir, celebrating the joyous occasion that I was in church. Actually more like so many people he hadn’t seen in a while were in church.

I have yet to share with you the one symptom of Parkinsons that interferes most in my life, even keeping me out of church. It is ANXIETY. Loud sounds, fear of falling, getting bumped into, kneeling and not being able to get up, incontinence, what people think of my appearance, having a yawning attack (yes and they are ferocious) speech blocks, feet that wont walk. this list is endless. My anxiety shows itself mostly in sobs, losing my breath, not being coherent.

One would think that church is a peaceful quiet place and I should not be anxious there. Its all about my lack of control over my body.

The organist ramped up the volume of the organ, Bells from all over the church rang. There were some mounted on a column near us and they were so loud! Father Maxwells mic amplified his strong voice as he sang. Charlie, right next to me was almost hurting my ears with his booming voice The choir the congregation, even the kids from the pageant were singing “Gloria Gloria”

I felt overwhelmed. I had no control over any of this.

The sounds filled my mind with memories .. on my bike hugging the shoulder of the road and an ambulance’s wailing siren ten inches away, the sound of a close lightening strike while I sat on my backpack on a treeless ridge… tears poured out of my eyes. My body racked with sobs. I put my arms around Charlie and he held me. AND it stopped. Suddenly it was over. not just the sounds of the church. The anxiety was gone too.

“For God gave us a spirit not of fear but of power and love and self-control.” 1 Tim

Dear God, how do I access this spirit of power and love and self-control. How can I control my body when the “controls” no longer work .

I have been brave enough to attend Mass on a few occasions since Christmas. And when I cannot make myself go, I am reminded of the spirit of power and love and self-control I am promised. And this spirit will overcome fear. But when?

A quiet house, a humble dinner, a drummer boy resting his body on the kid playing Joseph. Another Christmas, another pageant, no camels but a spirit of control. it’s coming. But when…

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 “Christmas Eve

  1. Me too…..lots of your episode resonate with me …. and I do not have your diagnosis . I find myself going to websites on Sundays, sometime not even Catholic …. looking for solace.

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