The Fighters

The first stop on this grand tour was Lewiston

Idaho where I was welcomed by Coach Jennifer Ford and her Lewis and Clark Valley Rock Steady Boxers. This was my first time in a live training session and wow was I surprised at the level of difficulty the workout presented. The strength and endurance these fighters demonstrated showed their commitment to living well with Parkinson’s. I had visited with the support group affiliated with the fighters via zoom in June and vowed to visit in person. I introduced myself as a person with Parkinson’s an author and an ambassador for the Davis Phinney Foundation, as if those credentials meant any thing in their gym. In my heart this group claims top honors in skipping, jump rope, spinning, weights. and boxing. When the workout was done I was breathless and speechless.. We managed a group picture with Dooley and that was it for me. Coach Jennifer is a tough one for sure. But when she said goodbye there was a softness in her eyes that expressed the love she has for this group. Then she was back to her job. I will not forget the lessons learned from these strong fighters. They have motivated me to work harder in my personal fight against the disease.

RSB LCV

kittens

Kittens

We have kittens at our house.  This surprises some of my readers who know that I am allergic to cat hair. I am also allergic to dogs, pollen, dust, sage. Tumbleweed, latex, glue that is used in surgery.  The list goes on and on. In short, I am allergic to almost everything. 

I had eczema, from a very young age until I was 15. This horrible itchy skin condition manifested itself in rashes inside my elbows, behind my knees, in my fingers and toes, and all around my face. It was from allergies, I was told.

How can I stand cats in the house then? Have you ever heard of Benadryl? Loratadine?   Allergy eye drops?  I take all of these and wash my hands and don’t touch my eyes.

Why did we get some kittens?  Mice!   The mice took 5 years to find us.  I am sure they have been looking for us since we moved from the old house.  If they would have just followed us across the pasture,  our mouse worries would have started sooner.

I admit that I have not been particularly fond of cats.

But cats, like many animals like me.

When I visit friends with cats,  the cats come to check me out. Our new kittens love me.  Sitting in my lap or laying across my chest with their head on the neurostimulator for my DBS device, their breath in rhythm with the electrical impulses to my brain.

Where does one find good mousing cats?  Facebook has the answer.  A Facebook friend arranged for two kittens to be delivered to my house.  I asked my husband Charlie to pick up the to get the essentials: litter box,  kitten food, cat carrier. 

The kittens arrived much sooner than I expected.  I kept them quietly contained in their carrier until Charlie returned from the store.   Then all hell broke loose!

It was quite fun watching the kittens tear across our living room. It made me realize why pets, even rescue dogs and cats were difficult to come by during the pandemic.  Their companionship and entertainment value is priceless.

A rooster crowed. The sun rose. Dawn came and it’s the second day with kittens.

Charlie fed the kittens before he left the house.  The kitties got sick.  There was cat poop and vomit on our living room floor.  I got cleaning materials out and then searched for the kittens.  They were much faster than me.  I  reached over and caught one by the leg. In the process I rolled on the floor and came into contact with the lamp cord which pulled the lamp down onto my favorite rocking chair, breaking the glass and leaving a scratch. The shattered glass surrounded me,  the kittens, and completely covered the leather seat of the rocking chair.

Did I say I had shoes on?  Well, I didn’t.

While I was contemplating the situation,  I started to feel sorry for myself.  If this had happened  15 years ago it would be all cleaned up by now.  I just sat there in the mess of glass, cat poop, and vomit, and BANG something happened outside.  That jarred me back to reality. I backed away from the glass to where I had a window view and saw what happened.  Picnic benches that had been stacked on top of a table blew over in a huge gust of wind and had taken the screen door with them.  Now the benches had the screen securely pinned against the glass patio door so there would be no more damage. 

From my position on the floor, I saw something on the screen door.  It was green, more than green.  Long and narrow.  What the heck was it?  My curiosity pulled me off the floor, something difficult for me to do, and I staggered to the patio door.  I saw the largest praying mantis I have ever seen.  While I  examined this interesting bug I was distracted from my sadness about the loss of the lamp and worry about the kittens being sick. My depression about how physically hard it was going to be to clean up went away. 

Shoes on.  Paper towel and plastic bag in hand I finished the floor part of the disaster just as my husband came in the door.  He finished up the glass clean-up and made an appointment with the veterinarian. 

There were no strong words exchanged between me, my husband, the kittens, or their mess.  My husband, who lately has displayed some anger in these types of situations, took it in stride. “Stuff”  happens when you take on the responsibility of pets.  I welcomed that attitude of acceptance and adopted it for myself.

Later, I thought more about the whole situation.

Could I care for a pet by myself? Can I even care for myself?

Go away bad thoughts. You are not going to fill my brain with these stories of “can’t”. 

If the “mess” in your life is overwhelming, break it into smaller pieces.  Invite a friend to help you.  Laugh about it.  Take your time. But don’t let it rule your thoughts.

A Spoonful of Sugar

A Spoonful of sugar makes the medicine go down

Forty years ago I walked into West Park Elementary and introduced myself to the secretary as Carol Kleespies, the speech pathologist assigned from the Education Service District.  She took me around the corner to Principal Stine’s office and invited me to sit down in the chair right outside his door. You know the chair, the priority chair, for priority seating in the principal’s office.

If you have ever been granted priority seating in the principal’s office, you know what I am talking about.

Mr. Stine had a more pleasant greeting to me than those who regularly inhabited that same chair.

School buildings come in such a variety of designs. I don’t know of any districts that re-used the architect plans at that time. Buildings age and can become money pits. The maintenance of the roof being one of the most costly concerns.

When  the largest  district in my area needed to replace a couple of elementary schools, they saved money by duplicating the plans which resulted in twin buildings. I have heard tales of a sleepy speech pathologist  (now hired by the district) mistaking the kindergarten class in the new Sunset with the Kindergarten class at the new West Park.  You don’t know how embarrassing that can be until you’ve shown up in the wrong school on the wrong day.

I have worked in almost all the school buildings in the Education Service District coverage area.  Just as I was leaving the profession, I noticed that as new buildings were being built they included dedicated space fit for the specialists. Matched furniture, sinks, heat, electrical outlets, windows for outside light, a phone line, and later internet helped these important individuals do their jobs. In the old buildings, my students learned to find the “Speech Room”   in broom closets, converted shower room,  the nurse’s office, the hallway next to the music room, and the stage while PE was happening in the gym below. (And my husband adds the little closet next to the boys bathroom that had leaky urinals.) Sunset School had a modular that was a 15-minute walk past 20 classrooms. When the student arrived, they had to turn back around for the 15-minute walk back to class.

I had a great room at West Grade School in Stanfield.

(It should not have been mistaken with the school with a similar name but not appearance, West Park in Hermiston.)

I  had been given half of the modular at the far end of the school.  It was a great room. No sink but the heat worked. There was an air conditioner. The windows and doors opened and closed. And once upon a time, it had served as the leftover furniture room, so I had plenty of chairs.

There was one phone in the school and that was in the office. It was usually during the secretary’s lunch break that I  “snuck” into her office to see if I had any messages.  Oddly, the secretary treated phone messages as they were top secret and kept them tucked under the phone on her desk. If she was away from her desk, I got to read all the phone messages while looking for mine.

 Shortcutting across the playground to the office I passed by the windows of Mrs. Fleming’s first-grade classroom.  There was always one student who spotted me and informed all the others. Maybe this student was assigned to be a “lookout” as a classroom job for the week. 

Fall and winter brought cold wet winds blowing across the playground.  I  put on my ankle-length black raincoat and grabbed my umbrella to begin my daily traipse to the office  The wind funneled through a passageway between the 5th and 6th-grade wing and the library. This increased wind across the playground caught the umbrella just right, pulled it inside out, and tore it from my hands.  The umbrella blew and tumbled until it was caught by the walls of Mrs. Flemers’ classroom. To retrieve my umbrella I had to retrace my steps. I reached down to pick up my flattened umbrella and as I came up my eyes caught the images of 27 little noses pressed to the windows.  One of the windows opened a little voice said “ Mary Pumpkins are you ok?”   Another voice said  “Mary Poppins. She looks like Mary Poppins”.

From that time on Mrs. Flemings class referred to me as Mary Poppins.  If there were a few extra minutes when I visited her class we would all sing “A spoonful of sugar makes the medicine go down.”

The last week of school before Christmas break found students working on projects and gifts for their parents. The speech students were released from having to work with me that that week.  I missed the  Mrs. Poppins greetings .

Near the end of my lonely week I was startled when I heard a  knock on the door. I jumped to open it and in came Mrs. Flemers’ first-grade class.  Each of the 27 students carried a  copy of the story they wrote about Mary Poppins, and a spoon they had decorated for me. The spoonful of Sugar.

What does this  story have to do with Parkinson’s Disease?

A group I belong to, Amy Says Dance,  discusses pie.  No really.  Everyone has a favorite pie and we share that (virtual pie) as we practice our speech while introducing ourselves.  Some members of this group recognize that sugar affects them.  Other members are pie connoisseurs .

Mary Poppins sang about one spoon of sugar.  The average American consumes 43 spoonfuls of sugar a day!

I don’t believe there is a lot of research on the affect of sugar on Parkinsons patients. 

Here is an excerpt from an article I found  referencing the affect of sugar on the Parkinson’s brain. This was posted by Dr Bekky Port in the August 2020 Medium.

. Research has shown:

  • that excess sugar impairs our cognitive and memory skills, and our self-control.
  • the consumption of fructose, another type of sugar found in fruit and which can be converted to glucose, is linked to accelerated brain ageing.
  • a diet high in sugar is linked to increased inflammation in the brain in rats.

Driven by dopamine…

For many people, having a little sugar stimulates a craving for more and sugar has drug-like effects in the reward centre of the brain by activating dopamine production.

We can blame this on our evolution. Sugary foods are excellent sources of energy, and a drive to find such fuel would have promoted our survival as a species back when food was harder to come by.

Dopamine release reinforces behaviours — making it more likely that we will carry out the same actions again. So, when we eat sugary foods the brain responds with a kick of dopamine, encouraging us to consume more.

Unfortunately — in a world where doughnuts, sweets and sugary pop exist — we haven’t evolved past our brain’s love of sugar.

How is sugar linked to Parkinson’s?

Research has linked sugar and Parkinson’s in a number of ways:

  • An increase in sugar cravings may be a side effect of the types of microorganisms (like bacteria) that live in our gut that can change in people with Parkinson’s.
  • Some people report that eating sugary foods makes their Parkinson’s symptoms worse — but this has yet to be proven through scientific research.
  • Diabetes has been shown to increase the risk of neurodegenerative conditions including Parkinson’s.

Research into the impact of diabetes — both type 1 and type 2 — on the brain is a hot topic and the potential connection to Parkinson’s is becoming clearer.

High blood sugar levels can cause the brain to age and shrink. It can also lead to small-vessel disease reducing blood flow to the brain and increasing the risk of vascular dementia.

Well, there we have it. Some good reasons to think before we have that second piece of pie…or my big bowl of  ice cream and my little piece of pie.

I couldn’t image eating spoonfuls of sugar all day, but  basically, I do.  Blame it on the lack of dopamine to prompt my desire for excessive intake of sugar. 

Heres the lLyrics
Mary Poppins:
[Spoken]
In ev’ry job that must be done
There is an element of fun

[Sung]
You find the fun and snap!
The job’s a game

And ev’ry task you undertake
Becomes a piece of cake
A lark! A spree! It’s very clear to see that

A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

A robin feathering his nest
Has very little time to rest
While gathering his bits of twine and twig
Though quite intent in his pursuit
He has a merry tune to toot
He knows a song will move the job along – for

Mary Poppins, Jane, Michael
A Spoonful of sugar helps the medicine go down
The medicine go down-wown
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

Mary Poppins:
[Spoken]
Spit spot!

[Interlude]

The honey bee that fetch the nectar
From the flowers to the comb
Never tire of ever buzzing to and fro
Because they take a little nip
From ev’ry flower that they sip

[Spoken]
Mmm rum punch, my favorite.

[Sung]
And hence (And hence),
They find (They find)
Their task is not a grind.

A Spoonful of sugar helps the medicine go down
The medicine go down
The medicine go down
Just a spoonful of sugar helps the medicine go down
In a most delightful way

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.

Dads

My steps through the sand and grass were slow and deliberate.  I held in my left hand a spinning rod and used my right hand to balance on air.  Charlie, Luke and I hired a guide to take us freshwater fishing.  We followed her, single file across a thin slice of land created by an oxbow in the Salmon River. 

I had a sensation that stopped me in my tracks.  It was my dad.  He was there walking with me, with a fly rod in his hand. 

“Charlie, dad is here”

“Of course he is here”.  Charlie replied without really thinking.  “He came here what, twice a year for as many years as I  knew him.”

“No, I mean he is really here, now”.

I had not felt his presence so strong since the day he died 8 years ago.

We followed the guide down a short bank and onto a sand spit.  I took the line in my hand, flipped over the bale and cast out.  As I reeled in my eyes caught the shiny spinner come back through the clear water. I had expected my dad to say “cast a little further out” but Dad was gone.  He had walked onto his favorite fishing spot.

 I turned to the guide.  “Do you know who owns Gustavus Lodge?”

“I do. But they are selling it.   My parents came here every year.  And when I was 15 I started coming here.  I started guiding”.

“My dad came here so often, he didn’t bother to take his boots and his raingear home”. 

“My parents left their gear here too. I wonder if they knew each other”

Mental calculations told me she had probably not met my dad.  But her parents may have.

Michelle from the Bear Track Inn came to pick us up from the fishing excursion.   

Michelle married into the Onley family.  Her husbands’ father and mother built the Inn in this beautiful meadow.  As an engineer, her father-in-law had all the necessary skills to make this place a destination in itself.  He was gone now, but  his wife Jane was still at the Inn every summer, June through September.  She hoped to leave  for the last time this fall and spend her time in Hawaii.  Michelle would be filling her spot.

Michelle and I shared short conversations as I sat in the front passenger seat. She drove us down dirt roads to get us to our activities.  I learned that her own father had died with Parkinson’s . Her closeness to him as she was growing up changed as she got older.  She didn’t understand why. She loved him dearly, and he loved her.  But when it came to his Parkinson’s, he did not share what he was experiencing.  He called for her to come home when he knew the end was near. And when he was gone from this world Michelle realized she knew very little about how he had lived with Parkinson’s.

 She watched me, and I felt she was more than observing me.  She was absorbing me, comparing me to what she saw in her dad.

Monday  morning  I had a zoom meeting with a Parkinson’s support group in San Diego.  Michelle and her mother-in-law  Jane took me to a residence on their property where I would not be disturbed.  As I set up my computer on the kitchen table, I invited them to stay and listen, and Michelle did.

I talked for about an hour.  And when I was done, I turned to Michelle.

“You were a good sport to stay and listen to all this talking about Parkinson’s disease”

She put her hand across her heart and in a soft voice she said

“I never knew all these things my dad was going through.  Your talk helped me understand how the disease affected his body, why near the end of his life he was like he was.  Thank you for sharing your story.”

I thought about my own kids.  They live so far from us that when they see me once a  year at the most, my body had changed.  Do they notice?

I don’t hide from them.  But I don’t tell them the intimacies of the disease either. 

Will they be like Michelle, somehow sorry they didn’t truly understand what neurodegenerative means.

Who holds the responsibility? The parent who suffers silently through years of the disease.  Or is it the child who doesn’t ask the questions.

Michelle drove us  by the Gustavus Inn on the way to the  airport. 

I saw a man walking on the gravel drive to the main building.  He wore a faded red sweatshirt, baggy jeans, and a floppy old fishing hat.  In one hand he had a fly rod, and in the other he held a creel.  He set the heavy basket  down and I caught a glimpse of his face.

There he was. My dad,  in his heaven… and on his face… a smile.

Glacier Bay, Alaska

Glacier Bay, Alaska

(author’s note: this story parallels “DADS”. Please leave a comment as to which you like better)

Finding a secure place to put my foot became more challenging. Sandy soil gave way and I had to consciously think to pick up my feet.  Step high, step big. Darn Parkinson’s.  It was not going to spoil this.

Charlie was nearby, and Luke was ahead of us, walking with the young female fishing guide the Inn had recommended for the last adventure before we were to leave Gustavus, and the Glacier Bay area of southeastern Alaska.

 My dad.  He walked by me, passing slow  me on the trail.

 He had been gone for 7 years now, but I felt his presence as strong as the day I last saw him.  December 14, 2014.  The last day I held his hand and stroked his forehead. The day he passed away.

Charlie, I said.  Dad is here.        

Of course he is.  This place was heaven to him.

I just felt him, he walked by me.

Ahead, Natalie paused, she stepped off to the side of the trail, her eyes trained on a spot where the river was wide and shallow.  She had many years experience spotting wildlife, even though she was just 23. She scanned the riverbank, searching for something.   We caught up to her and Luke.

 My dad came here, Natalie, alot.  Two, sometimes three times a year.  He stayed at the Gustavus Inn. A week at a time.

Its closed now.  They owners are trying to sell it.

 He came so often he left his rain gear and his boots here. I wonder if he walked along this river.

 My parents came to the Gustavus Inn every summer. That’s funny. They left their rain gear here too. When I was 15 I started work as a guide.  I wonder if I ever met your dad. 

He was just here I almost said out loud.  I should have introduced him. To meet a pretty young guide would have been the highlight of his trip.

She stepped back on the trail.  We continued our walk along the riverbank and back to the small parking lot where we had met Natalie earlier.

The van that had dropped us off was waiting. We took some photos and I climbed in the front passenger seat.  Our driver was Michelle, one of the family that owned the Bear Track Inn where we were lodged.  She wanted to know all about Natalie and if we would recommend her to other guests.

As we drove away, I looked to the left and saw a white lodge, the Gustavus Inn.  So this is where dad had stayed on many of his fishing trips to Glacier Bay.  I had never seen it in person but recognized it immediately from descriptions and photos.  An older fellow with baggy jeans, wet to the knees and a faded red crew neck sweatshirt sat down on the porch’s rocking chair.  He pulled one boot off and as he dumped water out of it he looked up and out at the road. I lost sight of him and the lodge as the van gained speed on the blacktopped road.

Of course my dad would be here.  Glacier Bay is a fisherman’s heaven.

Allison: John 10:10

Down, down, down the trail went towards the small Oregon town of Banks. We were riding the state bike “rail to trail” which is located between Banks and Vernonia, Oregon.  Gliding at 15 mph kept me in control because if I went any faster, I would  not be able to respond quick enough to avoid the bumps in the road. The bumps caused my feet and bottom to lose contact with my recumbent trike and when I regained contact I hit hard and IT HURT! I heard a voice from behind, it was Charlie calling out to me.  “10:10” A smile came across my face.  Why? The backstory first.

 

Yesterday we rode to Vernonia. The trail was different in that after you caught the trail from the campground you cycled down through a set of tight switchbacks  and then climbed steeply up the other side of the  canyon with another’s set of tight switchbacks. After that hard climbing was several miles of level and  plain-fun riding through a beautiful forest. When we arrived in the smallish town, we were hungry. Asking local people for the  hotspot is always a good idea.  We were directed to Main Street where several coffee shops and diners enjoyed by locals and visitors alike.  We chose one, parked our bikes and sat outside at an umbrellaed table.

 

In small towns there seems to be more time. We had questions for our waitress, and she didn’t rush off.  This was her first day of work at this restaurant.  She was an elementary education major from Hawaii, with hopes to get a master’s degree in English as a second language.

We loitered at this restaurant for over an hour after we had finished eating.  Finally, I stood up and grabbed my trekking poles and Charlie followed suit be standing and turning towards his bike.

 Then, a woman appeared at our table.  Where she had come from, I wasn’t sure, but learned later she was taking a shortcut through on the way home from the store when she  joined relatives at the table next to us.    

And suddenly  without announcement she was at our table.

“How come he gets to ride a bike and you have to walk with those sticks?” I pointed over to my trike: “There’s my ride” I just use the sticks to walk.

We talked while standing up for a while, then sat down and talked more.  All this time no one asked us to leave the tables.

She revealed that she had blown an interview for a teaching position due to her nervousness.  We talked about interviews and tricks to deal with anxiety.   Then she told me why she wanted the job, it was with a challenging level of students.  She explained that she felt a connection with this class, as she had been troubled herself.  She said she also had experienced addiction issues, but not anymore.  I asked how she overcame her addictions and she responded John 10:10.   “I have come that you may have life.”

I didn’t even know her name, yet in two hours she had told me the story of how she was still alive. One little piece of scripture had saved her.  Every time she was tempted, she said “John 10:10 I have come that you might have life”.

She finally told me her name is Allison.  She told me she is happy with her new life.  She is 5 years sober. I didn’t get her last name, her address or anything to identify her.  I  gave her my card and told her “It’s up to you if you want to talk to me more.”

We hugged each other “goodbye”, she held tight, and I held on a bit longer that usual, just to let her know that I really meant it.

Everyone has a story.  If you take the time to listen to a stranger’s story, you get to decide  if  it is a treasure or a lump  of coal.  I have told my share of “lump of coal” stories.   And now I only tell stories as truth.

I believe Allison’s story.  It could have all been made  up.  But it was not. She is a treasure more beautiful than gold.

The grin on my face must have seemed strange to oncoming bicyclists. We try to keep our mouths closed to bugs!  But I was thinking of Allison who gained her life back with  a short scripture.   John 10:10

The thief comes only to steal and kill and destroy; I have come that they may have life and have it to the full.

Allison had 5 years into her new life.  I  had 13 years away from my old life and felt I was going  down, down, down  even faster than  my trike took me on the  trail.

I needed to breathe again.  John 10:10

Parkinson’s is the thief.  But we choose if and what we let it steal.

I stole back these past few tough months Parkinson’s stole away from me by riding like a crazy woman for 88 miles through beautiful old growth forest. 

John 10:10

It  makes me smile.

Children Visiting

Children Visiting 5.26.2021

“The Kids are coming on Sunday at 2:30”

“What kids?”

“You know  the KIDS!”

“Oh you mean THE KIDS!”

My husband is a CASA (court appointed special advocate).  For the last several years he saw the KIDs on a regular basis.  I never knew who the KIDs were, their ages or anything about them.  I just knew that when he went to see the KIDS, it was very important and also very special.  The importance was he would gather information so he could “be their voices” in court cases concerning their guardianship.   It was also a special time to have a visitor come to their home just for them.  The visits usually ended with all the kids in the family gathering around to hear a “Charlie Story.”

He saw the KIDS for 7 years. Finally, their case was completed, and they became available for adoption.  Their foster parents adopted them.  And when the final papers were signed, Charlie was able to tell me about these KIDS.

Parkinson’s “plays on” no matter what you have planned.  This was a special day and I genuinely wanted  to do my part in it.  I usually stay home and hide from events when my symptoms are exceptionally annoying.  There  was a decision I had to make about today.  Because my balance was so bad I could easily trip over the toys Charlie brought in from the shelves in the garage.  My language was a bit confused when I tried to talk.  I had trouble getting out of the chair.  And the sound level, that glorious sound of children playing, was interspersed with shrieks and cries that pierced my ears. I could foresee a major panic attack brewing. Yet, there would no hiding when the KIDS came.  They would  seek me out.

I made my decision.  Just stay.  Sit in the living room and enjoy watching these KIDS play. 

And I did and it was a great time.  As the afternoon wore on  each child initiated an interaction with me.  I didn’t have to  go to them.  Even the baby got involved by glancing over at me.   Our eyes locked.  He ducked under his mom’s arm and then sprang back up.  “Peek a  boo”.  He  initiated “peek a boo” with me! How cool is that!

Charlie had help cooking up hotdogs, hamburgers and corn on the cob. He made a condiment tray and bought double stuffed potatoes salad from the store deli.

Another choice to make… I had to shake off the fact that I hadn’t prepared the meal.   I  let my visitors serve me and clean up my home.  It was hard to be OK with in my head and in my heart.  We were breaking down the schema of “having dinner  guests”.    I was in a new role.

 Our plans to enjoy our back yard and patio were ruined by a spring storm so we sat together around the big kitchen table, like thanksgiving.  It was thanksgiving!

At the end of our time together, one of the younger boys came up to Charlie and said  “ Are we ever going to see you again?” He put it all together that today was a going-away party:  that Charlie’s official role in their lives was over.

Charlie’s response  “well, if you want to we can be friends for rest of your life.”

It was so quiet after they left.  But as I looked around the empty living room. I could see every little face looking back at me. None of them had judged because I couldn’t move very well.  I don’t think they even noticed.

Another step in accepting myself.

A Bluebird Day in Bickleton

A short strory about keeping traditions alive.

(a story about traditions)  Carol Clupny 5/19/2021

glass over the door
The carousel is housed in this building during the festival.

“Champ” was the horse of the year!

A Bluebird Day in Bickleton

(a story about traditions)  Carol Clupny 5/19/2021

Getting dressed for Sunday morning church as a little girl actually  started  Saturday night. It began with the adult in charge  (mom, dad, big sister Beth) struggling to get  my sockless sweaty feet out of my cowboy boots.  Mind you, these are the same boots I had put on my feet on Monday, and they had not been off since!  ( I am exaggerating a little here)

The tub bath  might have been fun if I wasn’t the youngest of 5 kids. (No we didn’t bathe in the same water, the house water heater was not  big). Sometimes I was first, sometimes last with the water temperature depending on where I appeared in the order.

I hated baths. The actual event for me was  like getting dropped into sheep dip, scrubbed from head to toe with the hardest brush sold by the Fuller Brush man and then experiencing the  most detested action of Saturday night, getting my hair washed.  My dutch boy cut brown hair returned to its towheaded color.  I cried during the hair scrubbing, as I did when the knots were combed out. 

But then came some nice smelling pajamas, a story from my dad and I would fall asleep. Mom and dad’s alarm woke me in time to get dressed for church, which included brushing the clean shiny hair on my head and getting on my shiny black patent leather shoes over the white socks on my feet.

I could go on about Sunday  traditions at my house, at the neighbors house and Charlies house when he was growing up with 7 kids!  But if I did you wouldn’t hear about Bickleton.

With our two sons grown up and moved away, Sundays in the empty nest Clupny household have turned into days of adventure.  The adventures up to this year have been mostly bicycle rides.  These Sunday athletic endeavors  ended on main street Hermiston for a waffle with strawberries and ice cream at Hale’s restaurant.

I have not felt up to riding bikes these past few weeks, so Charlie started offering up places for a drive.  The apathetic me was going to convince him I wanted to stay home and nap.  He started listing places he thought would excite me. A  gleeful tone in his voice when he said “Bickleton” indicated where HE wanted to go. I could not say no.  My care partner deserved to go where he wanted to go and Bickleton, WA was it.

Being Sunday I had already had my Saturday night bath, but I had workout clothes on including  black knee-high compression socks with red Billy goats imprinted on them.  I left those on because frankly they are a bugger to get on and off and traded out the work-out clothes for a loose fitting dress. I climbed into our new-to-us Ford f-150 pickup and we chatted most of the  90 miles to our destination.  There is something about sitting side by side on a car ride that is conducive to conversation. Pulling into the town we had the choice of the Bluebird Inn on the right and the Carousel museum on the left.  Stomachs won over intellectual curiosity and we parked in front of the Bluebird Inn. For being such  a tiny town in the center of nowhere I was surprised to see other tourists roaming the streets. Immediately I was self conscious of my attire and my mobility. The ladies walking by looked twice at my Billy goat  patterned compression socks showing from my knees down. They stopped their gaze at the black patent leather shoes I was wearing. Once inside the  surprised expression of another woman’s face as she  saw my shoes, the compression socks and now I walked supported by two old trekking poles.

We had  a delightful lunch in the old inn.  It was fun listening to the employees explain to tourists what Bickleton was all about…bluebirds.  Bluebirds chose Bickleton as their home away from home.  There were little white boxes with blue roof bird houses everywhere. 

There was something else unique about this town with a  population of 90. Every year the entire population works on the town festival.  They set up a Carousel for the event which also includes a rodeo.  Rodeo I understood, but carousel?

We spent the rest of the afternoon in the carousel museum examining the horses and learning that the carousel was purchased from Oaks Park in Portland about 1929.  It was the dream of the Europeans who settled this area that they have a little touch of  home away from the home country…like the bluebirds who settled in-here. This little town has a lot of history!  

Back to the birds…maps of the 4 routes designated as the best for bird viewing were available at the museum.  We toured the blue bird route #1.  Blue birds were everywhere.  Then we drove to the area where the yearly festival was held and  saw the building for the carousel, right near the rodeo grounds and a great picnic area. 

And the very best thing I experienced was the delight of my husband as he exclaimed over and over

I am so glad we came here. 

This is so cool.

What a great place to be! 

I started this post thinking it was going to be more about Sunday traditions.

And I end it here with a couple thoughts:  If I had let apathy win  and we had stayed home, apathy would attack again and again. Apathy is trying to build up the walls between me and the world. 

 My care partner, my life partner keeps up his attempts to get me out, get me moving.   It gives him joy to take me adventuring.

I need to sneak away from apathy when it comes knocking and comply with adventures offered.

That’s a good Sunday tradition.