piles of stuff

Piles of stuff  August 10

There are several workstations around my house.  The office has a desktop computer and piles of papers.  The hallway has a table and chairs and right now has piles of cables and wires.   The kitchen table is a good workstation for drawing. But now I must clean up the piles of pictures so that we can have room for dinner plates.

 When I have to do a ZOOM and look presentable I set up my laptop workstation in front of the large picture window.  The natural light from that location is the best. Piles of notes accumulate there.

 Right now I am sitting in Luke’s Lair.  It is in the bonus room over the garage where our youngest son Luke slept when he lived here. I have piles of stuff, exercise equipment, art materials, several chairs, and a mini-tramp. 

Where does all this paper and piles of stuff come from?  

I must be a stuff magnet attracting more as I make more turns around the sun. Growing older and adding more items to pack around is not working.   Despite my efforts to drop some things off the piles continue to grow.

There are two couples I know of, who live well with Parkinson’s and are dumping their stuff. All of their stuff; houses, furniture, vehicles. The husbands are fully on board with their Parkinson’s afflicted wives. One couple has converted a Mercedes Sprinter van and the other is purchasing a new pickup and an Airstream trailer.  The plan is to live out on the road. 

Different strokes for different folks.

I don’t want to get rid of my stuff.  I want to come back to it.

I have been away from home for about 6 weeks at the longest.  I lived well with one backpack.  I didn’t need anything else.  It was enough.

I am content.  I am happy.  I live in a great house.  I have a super care partner in my husband.

My husband and I are at least 10 years older than these two couples.  Unlike them,  I do not need to get rid of all my belongings.  I can travel to get away from my “stuff” and come back home to it when I am ready. Condensing the piles before I leave will fool me into thinking  I don’t have so much.

I fall.  I am stiff.  My handwriting is illegible. I have poor balance.   My right hand tremors.  Sometimes my thinking is a little crooked.  Most of the time I feel like I will live through the day.

With all I have collected through life, there is only one piece I would throw away for sure.

I have tried to ditch it in the past, it has found its way back to the piles around me.

It’s the belief that my work, my projects, my book, my narration, my drawings are not good enough.  Although I have been validated time and time again, by numerous people, this disbelief is one piece of stuff that hangs around.

I can live with all the piles.

 I am hoping that I can live with this one piece of stuff, though,  until I am ready to let it go.

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 “piles of stuff

  1. Same problem here=stuff. Try to delete and can’t let go. Am looking forward to our visit 9/17/ETA? Osage/somewhere. In addition to book writing talk, I need symptoms/talk. So, hope we can squeeze in at least 1 hour.

  2. Thanks for sharing, Carol,

    I just retired and moved back into one home, having to keep an apartment for the last 6 years that Don and I have been married. I feel bad about my piles and am trying to work on at least one thing a week in addition to the usual summer responsibilities. Don asked why I would have two nearly empty catsup bottles in the refrigerator in a somewhat critical manner and I reminded him that I still have two of several things. I think of you and Charlie often. God bless you all and thank you for sharing your life!

    Connie

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