Tandem bike vs Recumbent Trike

With the pandemic influencing our whole world, I have extra time. Don’t you? After cleaning closets and drawers and any number of other household chores, I have taken this extra time as an opportunity. That’s not so new to me because I find opportunities just about anywhere. Getting on the computer I looked at pictures, read blogs, and scrolled through social media posts from days long past. Tonight, I found pictures of the Yellow Mosquito Eater and Grepedo. What creatures could have such names? These are the names of bicycles I have loved. Tandem bicycles to be exact.

Have you ever seen a two-person bike and thought…oh that would be so fun to ride. You can think that all you want but learning to ride a tandem is a lot of work. I am not talking about the tandems of the Daisy Daisy bicycle built for two… Or the kind you rent in a beach town to ride along the boardwalk. Those bikes have just a few gears and a big cushy seat. The tandem bikes I have become familiar with have 10 sprockets and 3 rounds or is it the other way around….3 sprockets and 10 rounds in the cassette. Darn words for bike parts always get me. I do know they have 30 or more speeds to choose from depending on the terrain…uphill we go to low or granny gears and downhill we fly in the higher gears. There is a lot more to learn about this tandem riding. There are actual titles involved. The person in front is called the captain or pilot. This person is a strong rider who is in charge of steering, braking, and shifting the bike. The person in the back holds on for dear life and trusts that the captain doesn’t drive you both into a ditch. This back seat rider is called the stoker. The stoker’s job is to provide power. The front rider has control over the handlebars, the back handlebars are for holding on only. There are a set of pedals for both riders and these pedals move together. Some people think that you can pedal at your own speed. That is wishful thinking because whatever the captain does in the way of pedaling, the stoker does too.

I learned early on in my diagnosis with Parkinson’s Disease that bicycling helped reduce the symptoms. Now, twelve years later we know that it isn’t just the bicycling, but also the intensity of the movement over time. Researchers call this forced exercise. Riding at a sustained 80 or 90 rpm over 40 minute period may not be something a person with Parkinson’s cannot achieve  by themselves, but on a tandem, the other rider assistswith the power to help get there.

My first tandem ride was a truly frightening experience. Friends brought their tandem for us to borrow. Charlie hopped on, and I got on the back and we started pedaling out of our driveway and on to the quiet country road. He pedaled fast, and my feet slipped off and flapped alongside the pedals. I felt the bike slow and then stop abruptly at the stop sign. I barely had my feet back on the pedals when Charlie turned the bike right, made a U-turn back to the house and stopped in the driveway. “Why the short ride?” Our friends asked. “There’s a problem with the bike”, Charlie answered. “There’s a terrible screaming sound coming from the backseat.”  I got off as fast as I could and went up to the house to get a shot of whiskey to calm my nerves. I had been scared to death.   Sitting in the stoker’s spot I could not see a thing. I didn’t know when he was going to stop, or turn and he didn’t tell me what was coming next. I was totally dependent upon the guy in the front seat. Our wedding vows said nothing about giving him full control on a tandem bike. I wasn’t ready for that.

Several months later I saw a yellow tandem inside of our garage. I recognized it as belonging to our neighbors. When Charlie asked to borrow it, Scott the neighbor took Charlie for the ride of his life. Charlie had the opportunity to have his own frightening experience.  The communication between Scott and Charlie was the same as between Charlie and me; nonexistent.  And I didn’t even have to pay Scott for the favor!.

YouTube videos showed Charlie how tandem riders were supposed to work together. He asked me to give tandem riding another try. We changed into our biking garb, which I learned are called kits. This includes spandex shorts with some special padding to protect certain parts is parts…what we tell our children are private parts.   Guys biking shorts usually have a suspender type arrangement whereas the lady’s styles do not. A colorful jersey is worn on the top. The jersey has some pockets in the back for your wallet or phone, a snack or some butt butter. Note: not peanut butter but BUTT BUTTER!

The yellow tandem came out to the driveway. We got on the bike, and Charlie taught me the commands. Pedal up, ready, going, gliding, clear, on the right, on the left, slowing, stopping, turning, bumps, tracks. We practiced them as we rode. It became fun. I still could not see much in front, but Charlie did a nice job of telling me what was happening. I relaxed and enjoyed the view on both sides of the road.

We took this tandem to ride on our first Registers Annual Great Bicycle Ride Across Iowa. There were about 45 riders, some with Parkinson’s Disease, riding to raise money for the Pedaling for Parkinson’s Program. The second night out, someone left our tent door unzipped when we went to dinner and mosquitoes invaded. Charlie called these mosquitoes Iowa’s state bird. They were huge! We brought the bike in the tent that night because, well I am not sure why,   but I joked it was going to eat the mosquitoes. That’s how it got its name the big yellow mosquito eater.

We rode the big mosquito eater so much we thought we thought we should return it and get our own. So we ordered a co-motion periscope torpedo from the factory in Eugene OR and asked it be painted Oregon Ducks green. It went for three more RAGBRAI events. It was given its name GREPEDO by Nan Little the matriarch of the team.

Looking through the photos, I saw one of me curled up next to Grepedo, sleeping on a lawn somewhere in IOWA, a paper plate under my head for a pillow and in my hands was a napkin l held like it was the corner of my little blankie. Oh, the memories.

Last week I bought a new bike or actually a trike. It’s a recumbent trike made by the USA company Catrike, model name “villager”. It has one round and ten gears but it also has a pedal assist. I have ridden it a total of 36 miles, and my fastest speed so far has been 16 mph. I am in love with it. If you remember, your first pedal experience as a child frustrated you. You couldn’t coordinate your feet to get the pedals to turn. It was like that for me for just a few minutes. I figured it out and was off down the gravel drive and out into the lane. Fresh air in my face.

No longer am I forced to stare at Charlie’s sweaty back. I can see what is coming up in the way of scenery, or bumps. But best of all, I am in control again. I control the speed, the turns, the brakes. Freedom!

We still have Grepedo. It has a special place in our hearts ….and…. on the wall in our garage. I  look forward to more rides as I will always enjoy being with Charlie.

As the list of things I can do by myself gets shorter due to age and the advancement of the disease I am happy for any form of independent movement available. I am glad to own a recumbent trike, that I can ride anywhere I want all by myself!      Now to name it….hmm

PING PONG

Ping-Pong (because it certainly wasn’t table tennis)

Entertaining myself is not a problem. I am seldom bored. I can always find things to do, sometimes revisiting childhood games or teenage activities for fun. One day I reached into my memory banks to recall that I used to play Wii. Wii bowling was a favorite.

I have a long history of regular bowling. My mom was a member of a lady’s afternoon bowling league. My dad’s business sponsored a championship men’s bowling team. Some softball teammates bowled in the offseason. I met Charlie after he had completed a night of league bowling. I took bowling in High School and College for PE. When I was young, we didn’t watch football after Thanksgiving dinner. The entire family went bowling.

All of this was “real” bowling. It consisted of putting on slippery and sometimes smelly rental shoes, choosing a heavy colored ball from a rack, and throwing it down a highly polished wooden lane in order to knock down curvy white posts.

My form of bowling on the Wii had me coordinating my thumb on button A and my first finger on button B, swinging my arm back and bringing it forward, releasing B  at just the precise moment to activate the virtual ball down the virtual lane towards the virtual pins. It sounds challenging and that made me wanted to play Wii again. So I rescued “my” Wii from my son Loren’s dusty shelf, borrowed the missing games from friends so I could bowl, box, hit baseballs and tennis balls Wii style.

Charlie and I found several unusual items when cleaning out my parents’ house. (They didn’t have a Wii, but I think they would have liked it.) Some items were very small, such as a halibut’s eardrums and others were quite large such as a ski box, a steamer trunk and a Ping-Pong table. The ski box was built to the precise dimensions of our pickup camper’s floor. We were instructed to carefully organize our skis and poles in this box because if done properly there was just enough space for all the family members’ skis with room for the skis of one friend.   With the lid fitted, the ski box now became the floor of the camper. This box was made of beautiful clear pine and in its second life was used to make shelves in our kids’ bedrooms. The old trunk had become a receptacle for pajamas and nightgowns. I threw away these ancient items to make room for our many board games. The home-made ping pong table has a more colorful history and is the subject of the rest of this writing.

The tabletop was made of heavy pine, of the same quality as the ski box. It had a frame built so it could fit on top of another table or be supported by sawhorses. It was hinged in the middle for storage in the basement, but I never saw it folded.  It was actually used as a ping pong table but also had been pressed into service for painting small objects, building science fair projects, folding laundry and rarely, as the foundation for model trains.

Due to the COVID-19 homestay, I thought about what Charlie and I could do together that was more active than me sitting and writing while he watched documentaries.  In the same way I remembered bowling, ping-pong came to mind. I asked him if we still had the old ping-pong table. He went out by the barn somewhere and came back with it.  He put it up on saw horses and balanced it the best he could with recycled fence pickets from the old Funland playground. While wiping the dirty table I could see the top was uneven, warped. I looked for the paddles and balls in the garage closet labeled “sports” supplies. Charlie searched through our huge storage container. With neither of us being able to locate the net, paddles or balls Charlie ventured to Bi-Mart.  He found a $3 ping pong set with everything we needed and he wisely purchased extra balls.

Last night we finally tried it out. Just after dinner, the Hermiston wind rescinded and we donned jackets and headed to the back patio. It took two of us to set the net up.  We grabbed the paddles and Charlie served first. The ball came towards me, but on the hop, it hit an uneven spot in the table and went directly sideways, out onto the lawn and hit the dog. Charlie served again and was more successful. We got a couple of rallies going before the wind came back. Between the wind, and the uneven table, our serves and returns grew less accurate. The dog was hit several more times before she finally relocated herself to the side yard.  The lawn covered with ping pong balls looked like the city-sponsored Easter egg hunt with its several thousand eggs spread across the soccer field.

The sight of this tickled my funny bone, and I doubled over with laughter. My hysterical laughing made Charlie laugh. The wind increased. It got colder. We laughed more. Now too cold to play,  we went on our ping-pong ball easter egg hunt,  giggling over the funny places some of the ping pong balls had become lodged.

It was enough self-inflicted entertainment for us two old folks. The leaning, reaching and thinking about holding the paddle straight, and all that laughing, had worn us out. Charlie went right to bed and I fell asleep on the couch, only to wake stiff and sore.

Whoever knew that advanced conditioning would be needed to play “ping-pong”.

I can’t wait for the wind to stop so we can try again. Until then I think we will break out the cards and play “kings in the corner” at our kitchen table.

 

Living in the now

Living in the now

 

Today has presented several lessons about living in the now. I am really pulling out of my memory banks a saying something like “you can worry about tomorrow, agonize over yesterday but the only thing that gives you peace is living in today”.

I woke up before sunrise this morning and saw a friend was on a social media chat.  Hmm, pretty early so I sent a message asking her “What’s up?”     She replied “I am having twins”

WHAT? GREAT!! CONGRATS!!!

Her responses were not filled with glee.

I can’t. I am worried. Everything is going to double, my body, my expenses.

You need to celebrate.

Celebrate?

Everyone is a little scared about having a child.

I am scared to death. I am impatient. I cannot cook. I need a lot of alone time. I am going to look like a giant. I will never be beautiful again.

Oh, honey you will be more beautiful than ever.

The sun was glorious, peeping its golden head over the horizon. It was to be a fantastic day. My young friend could not see it. She was caught in the unknown of tomorrow.

 

A little time later I participated in Amy’s Dance group. Tuesdays are choreographing days and we are learning to put together moves into a group dance. Amy proposed that we each choose a dance move that represents something between our past before Parkinsons and our future. Steve’s move was the ASL sign for “now, or present”. You have to know Steve, he is a genius with words, has a pun for everything. His choice was so meaningful, so perfect. It represented where I want to be…in the now.

In the afternoon, I decided to rewatch the Davis Phinney Victory Summit from Baton Rouge. There was Amy again, not dancing but speaking on “Living Well with Parkinson’s”. She recalled her shock with her diagnosis. And now, it is a reality of life. She commented “If I think about the past, I want to remember things like when I took my son skiing. I have no control over the future. I could walk out into the street and get hit by a Fed Ex truck. Life is right now.”

The majority of my life I  hid my worry in planning. I wanted to be considered a well-planned and highly organized person. It was a cover-up of sorts.  Because of always having to plan, I had a really hard time “shooting from the hip.” It took a lot of energy to worry about my plans. So at this late stage in life, I am just learning spontaneity. I am learning to take each day as it comes to me. I like to think I am learning to dance.

 

Can you recall a day when you didn’t have anything planned? You just let it happen…what did you do?

 

What I wrote on Good Friday

Sharing my reflections of Good Friday:  with thoughts of Dixie Collins Hammock and Wayne A Gilbert 

 

Mary Chapin Carpenter lyrics 

parkinson’s still sucks but now it’s like everyone has a progressive degenerative diagnosis. that doesn’t help me feel less alone” Wayne A Gilbert 

 “I am glad I have a friend like you” wrote Dixie a few days ago.
I am too, I responded. 

Do you remember when we met? The night I called you? I will remind you because there are a few things I don’t want to forget If I write them, I won’t forget them.  I was home, alone, late at night.  I told you I lived here in Oregon which I had to teach you to pronounce. You acted like you never heard of the State of Oregon and made me convince you it existed.

You were at your home, in the countryside of Georgia a couple thousand miles away.  But as I recall, we were actually in the same place, in the city called Despair. It was dark there, with no streetlamps to light our way. We both were on the internet and discovered each other had reached out to a social media site, the one where the late night parkies hang out, hoping to find someone with a lantern to light the way to our answers.  I said, if I lived closer, I would show up at your door with a bottle of Pendleton OREGON whiskey and  two shot glasses.  We would turn up the music and dance in your living room.    We both laughed at the vision of this incredible dance party. 

I felt your hand that night, Dixie, reaching across the miles and taking mine.  And I reached back across the miles and took your other hand.  And we have been holding hands for a long time now.   I will never tire of it.” 

If you ever need to hear a voice in the middle of the night
When it seems so black outside that you can’t remember light
Ever shone on you or the ones you love in this or another lifetime
And the voice you need to hear is the true and the trusted kind
With a soft familiar rhythm in these swirling unsure times   mcc 

 

My world circles the sun each year.  I age away in years, 12 years since my diagnosis.  The friendship of those living close to me has thinned.  Their ranks have been strengthened by others from a distanceI have been nourished by words, poetry, writing, art, dance, humor.   

I am content, happy, and some days filled with joy.  I never used to be that way.  I was an angry youth.  I complicated my life with unhealthy relationships.  But I always had a goal.    

The anger didn’t leave me when I grew up.  And when Parkinsons came I stuffed it down inside like I had so many other things. And the anger didn’t start to go away until I knelt on a dusty road on the Camino in Spain.  And it wasn’t gone even after I broke open my heart walking in France.  Talk therapy, medication, and changing my life practices changed me.   

I am not afraid.  I am not guilty.  I am at peace. I choose joy. I change my adversities into adventures.  I keep chanting my mantra of hope.  Each day I set out to have the best day of my life. Time.  It heals.  

If you ever need some proof that time can heal your wounds
Just step inside my heart and walk around these rooms
Where the shadows used to be
You can feel as well as see how peace can hover
Now time’s been here to fix what’s broken with its power mcc 

 

I chatted with Wayne, the poet, the other night.  He says I was a bit of light in his darkness.  I felt a sadness for just a while when we said goodnight. I cannot heal him.  Yet,  I let some guilt slide through those open rooms in my heart.  So many of my Parkinsons friends have these dark nightsThe weariness of just having to fight so hard every day overwhelms them. Wayne has a morning routine now. He says it helps.  But then there is lunch, and the afternoon and the evening and then the sleepless nights.  Minds filled with worry and fear of so many things  

Wayne read a poem on his YouTube channel, with a dedication to me. I was touched especially by these phrases.  But I have placed my own meaning upon them. I wonder what he will think: 

i want to be the kind of person who’s trapped in a cave lights a torch figures out how to draw sacred figures on the walls 

You are enough Wayne Your sacredness is your own.” Can you hear my soft voice scream this?  

 

i want to make something more beautiful than words  

Don’t you love your words? Are they not beautiful enough? Why would you desire to make something better than your gift of wordsYour words convey the truth of meaning.   Semantic connections, pragmatic collaboration, morphological markers, syntaxThe symbols combine to create the language, the beauty of culture. 

  

i wish i could be calm even-tempered easy-going upbeat 

In musical terms, the upbeat is an unaccented beat preceding an accented beat, usually the last beat in the measure.  Not what you meant? I think you do understand.  It takes self wisdom. Strive to understand “why” you are not what you wish.  When you have gained that understanding don’t accent it anymore. Live with it.  

 

My heart-broken-open is clean.  The windows thrown open are still letting the light in.  It’s a glorious world.  Open yourselves to see it.  

 

 

 

Thoughts on Loss

Thoughts on Loss

I scroll through the social media posts, past the updates on the Coronavirus, past the ever-lurking advertisements that seep into my feed. I am bored with this online stuff. But then I see them, they catch my eye.

I pause.

Take another look Carol, don’t let this one by. This one, you have to comment on this one.

The first photo is a Roman Catholic Priest, fully vested, standing in the door of his church, holding the Blessed Sacrament, the Eucharist, housed in the center of the large gold monstrance. He raises the monstrance as a blessing to people slowly driving their cars, windows down through the parking lot. His face expresses what he may not want the parishioners to see: his heart, broken and bleeding for his parish, just as Jesus bleeds, still on hanging on the cross in the sanctuary through the doors behind the priest.

The next picture is of a broken heart. A teaching assistant posts she is very sad. She cannot interact with her students. The future of her job is uncertain. A teacher responds to this post expressing her own grief. I read them both and feel sadness. Yet it’s a different grief, more like a good friend moving away than the finality of a loved one’s death. All educators should feel a sense of relief that their students are okay, loved, still alive. But these educators feel responsibility. Their vocation is to oversee learning with specific techniques, data-driven decisions, and evidence-based practices. Their passion for teaching is supported by encouragement, smiles, kind words, hugs, pats on the back.

It is this passion that has broken the hearts of many educators.

Parkinson’s Disease author, blogger and advocate Heather Kennedy used this term in a recent podcast “Hearts broken open”.

I had not thought about a heart being broken open, but it illustrates what I see around me and hope for our future.

Hearts are broken because everything in the world has suddenly changed. The familiar freedoms, advantages, lifestyles we have experienced are gone. We as parents, teachers, all of society actually, want so much to hold on to the way we have always done it.  We can’t. With hearts broken open, the old ways can escape. We must let them out, even help them. We take our brooms and sweep out the cobwebs in the corners where the old ways gathered. We enter the chambers of belief and throw open the window to let the glorious light of a new time shine in, illuminating what we have held as true most of our lives. Things will never be the same, in education, in our churches, in our homes or in our world.

Some will celebrate. Others will grieve. There is no right or wrong. But as Heather Kennedy concluded her podcast, she said:

The most important thing to consider right now is to be kind. Be kind to yourself. Change is very hard. And be kind to others…

…And I add: you don’t know they have cleaned out of their heart, broken, open.

Get Out and Go!

Now here’s a woman I really admire.

Linda K. Olson

Get Out and Go! If I can do it, you can too.”

I am so happy to be on Linda’s email list.   I get her posts, which are super inspiring.  I dove into her blog on my birthday, as I was finishing up the California segment of our road trip.

August holds a day that turned my life upside-down. Thirty seconds late in the month—the small amount of time it took for both legs and one arm to be severed from my body.  She wrote about the terrible van vs. train accident she was involved in near Salzburg, Germany.

You’d think the date would be engraved large, somewhere in my brain. A day that I would approach every year with trepidation or anger.  She couldn’t remember the date, so for 30+ years, she didn’t think about it.  Yet one day she was drawn to look it up.

August 27.   A date she will now not forget, but for reasons, we would not expect!

A day that I now choose to recognize.   Most of us would put bad memories of horrific events as far back in our minds as possible.  Or shrink down very small so no one could see us and come back to real size when the clock strikes 12 and that day is gone for another year.

Not to mourn, but to celebrate.    You lost so much, what is there to celebrate?

A wonderful marriage, two beautiful and talented children, a granddaughter, a rewarding professional career, a multitude of friends.   YES! There is this…and so much more.

A life well lived. No regrets.    Oh, how I  hope to be like this…to love who I was and accept who I am now, and cherish every day in between,  WITH NO REGRETS!

 

Linda K  Olson, Thanks for modeling this attitude of courage and resilience.  You make me want to do better!

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 .