WHAT I LEARNED CONTINUED…

Back home, it’s so different than riding in Doolie our camper van.  I could get out of the van and have an ocean roaring in my ears from the road noise, I suppose. It is so quiet here.   And sometimes I could not easily get out of the van because I had stiffened up from not “stretching in place” or asking the driver to stop once in every hour for a quick break.  Here at home, I control how much I move, and it is not enough that’s for sure.

Stretching my physical body was important.  My emotional aptitude was what needed more growth.

I learned about building friendships takes time.  When we had less than 24 hours in most locations, sometimes the conversations kept us up late. Other stops did not allow enough time to really start the conversation.  As we left senior centers, church halls, and conference rooms I realized how one side the conversations had been, monologues given without much time for feedback.   I had hogged up an hour of each person’s time. But the true exchange,   back and forth, give and take, communication, the conversation was not to happen in these venues.

Among our planned stops, we came upon a few families in crisis.  The first family invited us into their crisis as if by doing so we could learn by their example of love and persistence.  And we did. It actually fortified us.  Another stop we learned that as hard as we tried to make it work, it was not a good time to be there.  Our visit became overwhelming and what we thought was a demonstration of care was most likely causing more stress and grief.  At the home of the third family in crisis,  their bad news was so fresh and shocking for them. No one knew exactly what was happening, but we saw that food was available and took care of errands and offered short visits for relief of the primary care provider.

I learned from these situations to be open and available, and trust that I  was ‘enough’ for that moment.

A rose opening to a bloom?  An onion with layers being peeled away? Both can cause tears.

 

how writing a book can change your life, or what I learned from the road trip

I have never been one for fanfare.  I would rather be acknowledged for my hard work in the everyday world than to be put in the limelight.   The readings at church yesterday stated, “don’t hide your light under a bushel”.  I don’t want to hide just my light, I want to hide all of me under that bushel.

Writing, publishing and promoting a book has thrust me into the open. The first book talks were basically for the book.  I talked about how I came to write it, how I found someone to edit, the specifics of design I considered to make it easy to hold and read. Reading a few of my favorite stories made the crowd laugh.  Since I wasn’t facing a whole group of people with Parkinson’s masked faces, I got positive feedback from the smiles and head nods.  I made jokes about what GOOGLE said about Book Launch parties and I made sure there was plenty of food and drink. I was speaking primarily to people who knew little to nothing about the disease.  I “normalized” the events to fit “them”.  It is said that a good speaker knows her audience.  I did.  I gave them what they needed.  I now wonder how different those first gatherings had been if I had let them see inside my Parkinson’s.

Who would read my book.  Friends, yes.  People with Parkinson’s, yes. Some Camino lovers, yes.  But get this: The first on-line order was from the executive director of the drum and bugle corps our oldest son Loren marched with during his young adult years.  I would have never in my life guessed that.   A very knowledgeable and well read person in the Parkinson’s community read it and  commented “I  have read a lot of Parkinson’s memoirs and yours is by far the best”. Again, I would have never anticipated  hearing that from this individual.  The president of a local school board got a hold of a copy, read it in a day and wrote a lovely response.  I now know I don’t need to worry about WHO will read my book.  Rather I need to make it more available to be read.

We just returned from a 4000+ mile road trip which included 12 speaking engagements.  These events were primarily focused on people with Parkinson’s.  They were well educated people with Parkinson’s as they had heard every doctor and every specialist in their area speak to them.  What they had not heard was the thoughts from one of their own.  I put away my big slide slow, added a fun movement break, tied in stories from the book and talked about tough stuff that the outside world does not see.  And then I urged them all to develop an attitude of adventure.

I observed, I listened. I met people who were really challenged by the disease.  There were folks who felt very lonely. Partners had left on account of the disease. Some were saddened because the doctors told them not to ride their bike anymore. Others were inspired by their exercise classes.  Some were single parents of young kids and worried about them.  We talked about medication, and off times and falling and DBS.  But the themes  of depression and apathy, seeing the pain and frustration and loneliness behind the masked faces.  This made me pause.  

 I hear how the book and my talk inspire,  how I inspire people to get up and move. What I don’t get is how.  I mean, why are they inspired by me?  I feel like an average person.  

That may just be it.  Quiet, peace filled, unassuming Carol Taking care of myself so I can get out and have adventures, and showing others they can have adventures also.

I dont think I am finished with this topic.  Good smells are coming from the kitchen though and my stomach is rumbling in response.

What was left behind

I thought I had walked it off, sweated it through, washed it out with liters of water and cold mugs of beer. I thought I had talked about it until there was nothing left to say. And when I thought it was done, when I thought I was done, my walking partners true and honest comments caused me to pause…because they stung. She could clearly see what I could not.  Thinking I had left my anger and sadness on the meseta in Spain when I was taken down to my knees on that hot dusty afternoon.  I was wrong, there was still something of it left in me.  She saw it when I first started to talk, but she did not interrupt, listening intently as I told the stories of what used to be me.  The me before the disease and the me that I had become,  what the medicine did to me, why I started to write.  Then she spoke those burning truthful words that caused me to realize that if I wanted to survive, I needed to change.

Her exact words etched in my heart, the remnants of the carvings then  blew away in the wind, landing somewhere on the Camino. Somewhere amongst the millions upon millions of words now embedded in the footpath, tread upon by thousands of pilgrims, rising up in the dust of their feet…like the smoke of burning incense from the botefumiero, lifting the burden of sins and  prayers  The Camino knows the stories, told over and over, none new.

These past weeks have been busy with travels. Metal and rubber hit the pavement instead of the vibram soles of my boots. The scenery flies by, only a  bit of the sky is visible through the oversized windshield of our van.  It’s too fast. I cannot see the wide expanse of the blue sky, or smell the new greeness on the hillside. There are no words left here on the pavement to remind me of the choices I made. I can only recall from the fragments left on my heart.  They aren’t broken, pieces just fell away.

I chose to live well.  That is obvious. But did I choose to love well?  Can I love an old friend enough to let her live well without me interfering in her life? Can I love a new friend well enough that she feels my caring presence beside her when I am miles away? Can the individuals in these groups I speak to see how much I love them when I don’t even  know each of their names? Do the two young men with whom I share a last  name with know how much I love them? Does the man I chose to spend my life with understand this changing love from the point of a disease I did not choose?

Today I had an “ahah” moment.  Because I held some of it in me, because the winds on the Camino did not blow away onto the paths of future pilgrims.

I haven’t loved enough.

Yet I know I haven’t failed, there is still time.

….from an unexpected place this prayer came back to me. Thank you Thank you for reminding me that you are surrounded and protected as well as I am, you who I love.

Christ be with me

Christ before me

Christ behind me

Christ in me

Christ beneath me

Christ above me

Christ on my right

Christ on my left

Christ where I lie

Christ where I sit

Christ in every eye that sees me

Christ in every ear that hears me

 

 

 

 

 

 

 

 

 

Being there for a friend in crisis

As I know more people in the Parkinsons community I am starting to realize how deep this disease reaches. Its not just about tremors, rigidity, balance. Below the tip of the iceburg there are dozens of non-motor symptoms of Parkinson’s. And intertwined with these often unseen challenging symptoms are mental health concerns. Some of these emotional issues come with the disease and others come because of the disease. Those that come “with” the disease can be attributed to the lack of dopamine in the substantia nigra, the part of the brain responsible for movement and also rewards. Those emotional issues developed because of the disease occur in more people than we think. The disease changes the way we move, think and speak. This effects relationships with family members, friends, professionals and caregivers. Relationships may break up resulting in financial struggles. Medical bills pile up. There is alot in life that can get messed up,even if you are prudent about taking care of things a long the way.

A crisis may manifest itself in many forms: panic attacks, self harm, suicidal thoughts among the most obvious.

Good communication is essential. Remembering that its not about you, don’t react to what you feel may be an attack. Rather, use active listening which helps your friend feel validated. “Take” the friend’s story and “hold” it so you can feel how it weighs the

person down. Be direct. Ask questions. Don’t worry about saying the right thing. Showing that you care and are concerned and that your shoulder can be leaned upon for support. Reach out to professional help as needed. But also know that your presence in your friends life may be all that is needed to get through this crisis.

There is so much loneliness, anxiety, depression and apathy in this disease.

. Just be present .

Be Prepared (I found this in my draft box, not sure why it wasnt published when I wrote it)

It’s part of the “scout” motto. I understand why. How many times have I gone out the door without my meds.   After driving several miles down the road  I remember them and have to turn around.   There have been times when I have not brought any food or drink and relied on the nearest fast-food menu,  which makes me bloat.  Hmm, have I taken care of my bills, taxes, financial planning. I once sat with an employee at the lawyer’s office helping her to get her last papers in order as she was picking bugs out of the air.  (hallucination due to a brain tumor). 

We got a sign for our teenaged son:  I CANNOT ADULT TODAY.

Sorry folks, we have to adult.  If we don’t take care of things we get fined for not showing up at court, pay tons of late fees for not paying credit card bills on time, have utilities turned off, have safety issues in our home from lack of maintenance, or adaptations. Sometimes we have to chase the elephant out of the room before it gets any bigger.  Those are tough conversations we signed on for when we passed the age of 17.

We have a progressive neurological disease  Truth be told, we are only going to get worse. But we can make things better for ourselves and those around us by getting and keeping our home lives and paperwork in some semblance of order.  There is stuff that needs to be done daily, weekly, monthly, yearly and for the lifetime and unfortunately to help others when we die.  Please don’t wait until you are the person sitting at the lawyer’s table hallucinating.  Get working on it now. 

Be prepared.

Be an adult.

You’ll be glad.

The Ribbon of Road: day one

After preaching to the Pendleton Support group to not be too hard on themselves for the difficulties encountered in an impossible task, I beat up on myself for not being well prepared and confident through the first part of the talk

I knew as soon as I arrived that I would have tough time. On the way out of town day 2’s host called to say a member of their group fell, broke his neck and passed away

That really got to me. The next phone call was telling us that the 46 year old son of friends committed suicide. I found myself shaken but I cant cut myself slack for not giving the best talk

Hadnt I decided at 3:30 this morning when I was wide awake like the rest of the parkies that today would be my best day yet? Hadnt I chosen an attitude of adventure?

Give it a break Carol

Give it another go

If you are going to preach it then do it

You are fine

Countdown: 2 days to Road Trip

We travel differently in Doolie than we did in Gertrude.  In the larger pickup and camper we had more storage.  We hauled tables and chairs, my guitar and bike gear in the back seat of the king cab pickup.  The bikes had bug patrol as they rode up on the front bumper. That’s with the exception of Grepedo, the green periscope torpedo tandem, who always got to ride inside.  That will be changing soon!!  In the camper I hauled my clothes out in a laundry basket and put them away, or not, in the plentiful storage.  In the new rig, our clothing is packed in compression bags before it goes out and we each get two little cupboards to store everything…including toiletries. Doolie fits in the RV  garage. We leave the door to the garage and the big sliding side door of the van open and can freely carry items in and out.  Poor Gertrude (actually poor Carol) had  a step stool and three steps to get to the fox platform and then one more step in to the camper.  Those days are over.

Tonight my brain is rumbling as bad as my stomach.  I have been feeling puny today.  Great, I  know, just before a major road trip. I  just laid low, took a long nap and worked on my talks.

I am able to travel.  I can walk, sleep on beds other than my own, eat just about any food I like.  I  think maybe I can even say I am a good traveler.  I even like the challenge involved in the adversities (which I choose to turn into adventures).  I promised to blog on this trip.  I may even write about Parkinson’s. Watch your email!
truck back design mock up[18965][19273]

PREPARING FOR A ROAD TRIP

Preparing for a road trip Jan.9, 2020

Charlie and I are getting ready for a big road trip to promote The Ribbon of Road Ahead. I am so excited to meet new people with Parkinson’s in the southwest and California.

We are starting out on Jan 21 and driving DOOLY, our Ford Transit/Coachmen CrossFit Camper Van to Burns OR. There’s a small gathering of Parkinson’s people there and I am really excited to meet them. The local bookstore owner has invited me to stop in and maybe do a couple of readings.

Out next stop will be at the Las Vegas Parkinson’s Place Moving Day. It’s their 3rd annual gathering and my first time there. I will step on the big stage for a few minutes where I will speak about Choosing as Attitude of Adventure.

We will take a week off to play, exploring the area around Phoenix before we head for Los Angeles where Sharon Kirschner (Blogger Twitchy Woman) has invited me to her home to speak with the “Twitchy Women” support group. WHAT AN HONOR!

From there we will head directly to San Francisco where I am speaking at the Institute of Aging. This awesome organization has invited me as part of their education series.   It’s open to everyone but is a ticketed event. Professional development hours are available.

In the bay area and central coast I will speak to these support groups: Santa Cruz, San Jose, Monterey, Morro Bay. As we travel home Dooly will get rest breaks in Klamath Falls and Bend while Charlie and I visit with support groups. We hope to be home on the night of Feb 19.

Preparing talks for each of these locations has taken time, but it is time well spent. My book is not the highlight. It’s the lessons I’ve learned from my adventures that I really want to share. The attitude of adventure came from a TED TALK I heard on YouTube. Bob Kuhn from British Columbia coined the phrase, so I need to give him all the glory. I just ran with it because seems to fit me.

Now you know where I am going and a little bit about my talks. My next installment will tell how I will physically prepare to travel in a 22-foot van for a month…including medication management, nutrition for van life newbies, sleep, and keeping comfortable without my favorite easy chair.

 

Lessons Learned from a Ladder

 

I peered over her Facebook photos and posts with cautious enthusiasm. My friend Beckett, recently getting a clean bill of health after a bout with cancer, was visiting Albuquerque, New Mexico. By chance, I would be traveling with my husband to see family there in a few days.

Two pictures especially intrigued me. One showed Beckett hiking along a relatively flat trail through lovely autumn scenery of different hues of browns and golds. The trail was covered with leaves and the green coniferous trees were highlighted against the yellowing hillside. A second photo showed her looking at the lodgepole ladder she had climbed.  From the top, she saw inside the cliff dwelling of an ancient person who had once lived in this community now called Bandelier National Monument. I immediately messaged her “Do you think I could climb that?” Becket wisely responded with “It’s wonderful, so beautiful” and not with something I would say like “easy peasy, anybody can do this”. I knew I had to go there and try.

Charlie and I planned on taking the shortest hike to the cliff dwellings. It was one and a half miles round trip. Considering that one month ago I had three vertebrae fused in my neck, and I was twelve years into a diagnosis of Parkinson’s disease, this short hike could have been a huge challenge.  I was an experienced hiker, but  I wore my hiking tights for good luck. At the car, I tied up my hiking boot laces and set my trekking poles to the correct length. We headed up the trail, at a slow but decent stride. My muscles started to remember how to hike. My legs loosened to the familiar feeling and I  took larger steps. The clicking of my poles on the hard surface of the path marked my pace. The sound that had always annoyed me now gave me a familiar comfort.

The trail became steeper as it switch-backed through the sandstone. Sweat rolled down my back and I took off my Davis Phinney jacket. The first ladder appeared in front of me. I glanced at it and turned to walk away. Then I heard a voice inside me say you will feel sorry if you don’t climb it. I handed my jacket and my camera to Charlie and reached for a rung with my hand and, putting my right foot on the bottom rung. Immediately I felt my foot freeze. The voice said you know what to do about this, do it. Looking up, I exchanged feet so my left foot took the weight of my first step. That darn right foot caused me problems on my bike as well as getting into our old camper. Left up, look up, I chanted under my breath until I reached the top and looked inside the tiny cave. I imagined what it would be like to sleep in here, the sandstone warm from the sun hitting it all day and the cold early winter air just outside the opening. I could have stayed but I knew I wanted to see more and started down. Again, my right foot naturally went first and froze and I had to pull it back. Left down look ahead. Looking down would have brought on a panic attack!

The trail narrowed and meandered along the cliffs. Up stairs carved in sandstone, down narrow pathways, I did it all. As darkness was coming I lead the way back to the visitor’s center. Charlie commented on my quick pace. I felt good. It was one of those moments where past meets present. Meds working with the DBS to keep me moving, muscle memory to grab and climb and balance.

Back at the car Charlie handed me his phone. “You have to see this. You have to see yourself climb.” I watched me on the tiny screen. I looked to see that with each movement I had three connections with the ladder, something I had learned who knows where, but a very sensible lesson.

I felt full of joy.   I sang myself to sleep as Charlie drove the rental car west, into the sunset and back to his brother’s house. I woke up thinking about the number three, how it is important in so many things and why it was important today as I climbed the ladder.

Safety is always first and part of this equation. If I hung on the ladder with just two hands or a hand and a foot, I would be “out there”, exposed. Second, when my foot froze, especially at the top, I had to know what I would do. I don’t practice climbing on ladders, so I generalized to other situations where I had developed a solution and it worked. Finally, I looked up or ahead. If I looked down or turned to look back I would surely have panicked. I would have seen there was a distance to fall and gravity would try to pull me back to earth.

I concluded these would be the lessons I learned from the ladder.

Be on alert. Don’t let yourself lose control. Hold on so you don’t end up “out there, exposed”

Practice moving. Exercise. Keep your body in shape. Have some “workarounds” to different situations so that when you need a skill, it’s at your disposal.

Don’t look down and don’t look back. You’ve learned what there is to know from those places already. Keep moving forward.

 

Looking back, a story about Christmas Mass at Cathedral

Dec 27, 2015
I love going to Mass at a Cathedral. What Cathedral, you ask? It could be any Cathedral. In our country or in foreign countries. The word “Cathedral” means “chair”. A Cathedral has the chair of the Bishop. Cathedrals are interesting places of worship and hold within many pieces of history. In Europe a Cathedral may contain the crypts of religious, royalty and even local politicians. Cathedrals usually have above average liturgical music. There may be exquisite stain glass, statuary or other art. The architecture of the ancient Cathedrals causes my mind to wonder “How did they do that?”

The Catholic Church is universal. Being universal means anywhere in the world you go, the Mass is the same. Without understanding or reading the Mass in English, a Catholic understands what’s going on.

I have visited many Cathedrals and churches in Europe. This year alone I have visited the Notre Dame Cathedral in Paris, the Burgos, Spain Cathedral which is a UNESCO site, the Cathedral in Leon which is often referred to as the Cathedral of Light and, the Cathedral of St James in Santiago de Compostela, Spain. In 2009 I visited many Cathedrals in Germany and France, yet my favorite will always be the Cathedral at Chartes, where a labyrinth has adorned the floor since around the year 1230.

I “googled” Catholic Churches to find one nearby for Christmas Mass. Exploring the area early, we drove by the Cathedral. Its a red brick building. It looks to be three stories high with a very tall steeple. I wonder what will strike me when I visit the Cathedral in this city. Christmas morning about 10:30 am we arrive at this Cathedral… St Andrew.

As I enter the sanctuary, I hear the choir. The choir seems so very far away in the choir loft which is up above a balcony. The choir is accompanied by organ and trumpet. The music is breathtaking. When I hear such special music I do not sing. I listen with all my senses. Thirty minutes before Mass the Cathedral is almost full. Charlie and I work our way to open seats near the front. The congregation is so diverse! There is a man with Down Syndrome sitting in front of me. His mother helps him find the pages in the hymnal. A man with a walker is in another pew. The usher bows to this man as he relocates to another seat. I hear foreign languages around me as more church goers find their places in the packed pews. I see people who have physical characteristics much different than my own. There are people native to this area. People of all ages. All different types of flesh tones. Brows which are heavy or light. People who are tall or short in stature. A beautiful East Indian family with the women dressed in saris and the men in finely tailored silk suits pose for photos in front of the creche. And of courses there are people who look much like this blonde North American girl.

The language of the Mass is English, but it’s noticeably difference from eastern Oregon English. The lectors, a man and a woman, proclaim God’s word in British English, more specifically British Columbian English. I think of Fr Luis as I listen. I have the urge to model a different pronunciation as I have often said to Fr. Luis “this is how we might say that here”. This is their territory, and I must mind my manners as a guest. I listen very carefully to the epistles, one Old Testament reading, a psalm lead by the cantor and then a New Testament reading. I admit I continue to be distracted by the accents of the lectors. Although their reading is totally intelligible it is noticeably different than the familiar voices I have listened to read for the past 40 years in my home church. The presider stands and the book of the gospels is well blessed by incense. As he reads I am worried that this flat monotone voice will deliver a flat colorless homily.

But I am surprised, astonished at the depth my heart is moved. It is two days later, and I am still pondering this message. This is my recollection of this priests words and I have filled in quite a bit more detail from research. I hope you as the reader will respond to what follows.

He begins:

“Masses of Christmas Eve were celebrations of the coming of the child Jesus.

Masses of Christmas morning have different readings. We do not so much celebrate as we reflect.”

Continuing he says

“Last night the bishop presided and I con-celebrated the mass. As we made our way to the sacristy after mass, Bishop turned to the me and asked, would you forgive a person who confessed to you he was responsible for the murder of 6 million people?.”

“Did this happen to you, Bishop?”

“No this is in reference to the book The Sunflower: On the Possibilities and Limits of Forgiveness”

(By Simon Wiesenthal, this book recounts the thoughts of 50 renowned theologians, world leaders and peace advocates who are asked if the horrendous crimes of the holocaust can be forgiven.}

The homilist now shifts away from forgiveness and reads a litany of recent “head lines”. . .

Lunch room worker fired for giving free lunch to middle school girl with no money

China ends one child policy

Star Wars movie hits one billion dollars

But then he pauses

Woman who survived for three months hidden in 3 foot by four foot bathroom with 7 other woman takes oath of American citizenship

The Cathedral becomes totally still. No one is shifting in their seats.

Even the soft baby babbles and squeals are silent. The congregation listens even more attentively as the homily continues (I have added further background information)

In 1994 Immaculee llibugiza, a young Catholic college student in Rwanda was home for the Easter holiday. Her world changed drastically as the Rwandan president’s plane was shot down over the capital city of Kigali. The assassination of the Hutu president sparked months of massacres of Tutsi tribe members throughout the country. Not even small, rural communities like Immaculee’s were spared from the house-by-house slaughter of men, women and children. Seven other Tutsi women joined her in hiding in that three by four foot bathroom. The space was so tight the women took turns standing and sitting. Food was scarce and Immaculee’s weight dropped significantly. Horrendous bloodshed occurred directly outside the thin walls of their hiding place. Her father had given her a rosary. She started praying the rosary and the chaplet of divine mercy. She prayed 27 complete rosaries and many chaplets each day. She became very peaceful and remained at peace and learned to have mercy on, and forgive the murderers just outside the walls of her hiding place.
After 91 days of terror, Immaculee’s’s prayers were answered. She was liberated from her bathroom prison cell and faced the horrific reality: Her entire family had been brutally murdered, with the exception of one brother who was studying abroad. Nearly 1 million Tutsis were massacred during the 100-day genocide. Her family, her townspeople, fellow college students were viciously murdered, chopped apart with machetes. Their bodies were used as roadblocks or dumped in the streams that created a river of blood to Lake Victoria. Later after emigrating to the US she tells her story in her first book:

Left to Tell.

My thoughts: I would not have survived.

She did.

The priest continued to deliver his homily

Another woman, also a Catholic walked across the killing fields shortly after the massacre had ended. She came across a boy who she had known to be a Catholic.

“I no longer believe in God,” the boy said.

“Why?”

“God made trees and a tree can make another tree

God made elephants and an elephant can make another elephant

God made Jesus but he will not make another Jesus.”

I don’t remember if the priest said anything after this. I was puzzled and awestruck and moved…so many questions and responses welled up inside me.

What exactly does this mean?

How do these stories all relate?

Today, as Charlie drove us home through the snow and rain, I sat in the back seat pondering this homily. This is my response.

I believe God the Father did make other Jesus’s.

Each one of us.
The boy was blinded by the massacre, the hate, the blood
How could he see?

I am thinking … its up to us to BE the Jesus we are.

To be for others the Jesus we are

To make the Jesus we are real

To make the Jesus we are come alive

The others will then know the Jesus alive in them

And be the Jesus they are

To make the Jesus they are real

To make the Jesus they are alive to others

Then these others will BE the Jesus they are..

Truth Forgiveness Mercy Justice

Pope Franscis declared this a year of mercy

I will visit a Cathedral, somewhere…

I will take my beads and kneel in a pew.. I will imagine the horrific situations of the Holocaust, the genocide which continues throughout the world, the results of terrorist activity, the mass shootings in schools and churches and malls…

I will pray for mercy.

Have mercy on us and on the whole world.