Zest at its Best: Wheeling Through Portugal and Spain

June 2, 2016 by Sunny

The Cathedral of Santiago de Compostela

The following story is about a spiritual pilgrimage through Portugal and Spain.

Susan Peters, the main author of the account, has a spinal cord injury and is a full time wheelchair user. Her story of spiritual renewal, physical daring and warmhearted camaraderie makes me want to return to Europe to travel “The Way” like she did. It must have been such a beautiful experience. See if you agree…

—Sunny

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With Duct-Tape and Daring: Elated Friends Complete Rugged Wheelchair Adventure

By: Susan Peters with Sunny Roller

The Camino de Santigo or “Way of St. James” is a mostly mountainous route that adventure travelers take to reach the Cathedral of Santiago de Compostela. Tradition has it that the remains of Jesus’ apostle, James, are buried at this cathedral in northwestern Spain. Hundreds of thousands of Christian pilgrims and many others set out each year from a variety of popular starting points across Europe, to make their way to the sacred site. Most travel by foot, some by bicycle, and a few travel, as their medieval counterparts did, on horseback or by donkey. Learning this, I decided to try it last Fall–using my wheelchair.

I’ve been a manual wheelchair user due to paraplegia from a spinal cord injury for 40 of my 68 years and I am still looking for adventure and mountains to climb. So, when a friend of mine suggested that I test my audacity and dare to set off on a wheeling expedition for hundreds of miles along the Camino de Santiago, in Europe, my eyes lit up. In need of personal renewal and sparked by the possibilities of this expedition, I made a commitment to travel “The Way.” Not just for its physical challenges, but also to rejuvenate my zest for life.

There are many routes to the cathedral. Pilgrims on the Way of St. James walk for weeks or months to visit the city of Santiago de Compostela. Some Europeans begin their pilgrimage on foot from the very doorstep of their homes.

Soon I had recruited my hardy crew of four people–two hired guides from Portuguese Green Walks and two great friends. After avidly planning the trip’s daily itinerary, off we flew to Portugal on September 25th.There are many different routes to choose for this strenuous pilgrimage to St. James’ resting place, but to receive the certificate for traveling The Way, one must clock at least 120 kilometers and stay on a route marked with yellow arrows. I selected the Portuguese way, beginning in the city of Valenca then along ancient paths north into Spain. Once I determined the route, the hard part was convincing people it could be done by wheelchair. Wrapped up in this initial challenge was actually finding a set of strong-willed, committed, physically-able helpers who not only believed it could be done, but also wanted to go. They were out there. I just had to look.

Ready to roll from the beginning, Susan and friend Nuno, face a rocky road ahead.

Excited and ready to roll at the starting point, I immediately confronted several dozen stone steps leading down-down-down to a narrow ancient path and then a dirt trail. That was when reality hit me–this excursion would not be the slightest bit easy. Every hotel was slightly different; so I was glad I had my friends with me to help with shower and toilet transfers, which was the hardest part of the trip, really. By day seven, the rough terrain had snapped off all of the metal screws on my front foot plate, and I had to continue the journey with a wheelchair that was partially duct-taped together. As we pushed ahead, we came across so many gorgeous sites that also became challenging delights. We walked and rolled through bustling ancient towns and pastoral cow pastures. We forded streams and bumped over bridges only a few inches wider than the wheelchair.

The countryside.

Pushing and pulling, we climbed steep hills and zig-zagged our way down rugged, bumpy Roman roads that had been laid in ancient times using boulders or giant stones. Not easy or comfortable to roll over.

In spite of the obstacles we bashed up against from start to finish, this adventure through Portugal and Spain exceeded every one of my dreams. All along the way, human warmth and camaraderie carried us. I met pilgrims from the U.S., Brazil, Korea, New Zealand, Serbia, and from other parts of Europe.

The cuisine.

With spontaneous chances to intermingle every day, fellow sojourners and I took delight in sharing warm companionship and stories of our trek. The people who live along the Camino wanted to commune and gave me a joyful sense of belonging. They energized us with constant encouragement, welcoming smiles, and nourishment of all kinds. And they shared so much–from replenishing my water supply, to enfolding us in big bear hugs, to sharing important secrets about the trails ahead.

With each new dawn I felt a fresh sense of renewal and restoration. As we continued to walk and roll along the rocky hillsides and over singing woodland rivers, my companions and I came to hear The Way’s new harmonies that seemed to be caroling just for us. We sang and danced. We hugged trees. We savored delicious hot meals–oysters, clams, rice, sausage, kale soup and Portuguese wine graciously served up at our wayside inns. We happily stopped at so many shrines and churches along the way, praying for the power of love to heal our world’s wounded.

Susan (center front) and comrades finally arrive at the cathedral.

After 120 kilometers, we arrived in Santiago at noon on day ten of our journey, just in time for Mass at the cathedral. Quickly escorted to a front row seat, I was elated to experience the famous incense burner dramatically swinging right above my head. Suspended and swaying back and forth from a very long rope through the resplendent cathedral over hundreds of pious onlookers, its wafting smoke and scent seemed to cleanse and coat us with a mystical sense of comfort and reassurance.

It was also my 68th birthday that day. So after the mass, we found a cozy outdoor café. With wine glasses clinking, we heartily celebrated our successful journey AND my birthday. A moment I’ll always remember. We did it! I did it! It was a wonderful feeling as we jubilantly turned ourselves into a lively Spanish fiesta.

I enthusiastically encourage others who use a wheelchair to consider taking the Camino de Santiago. I was so thankful that my therapist had suggested I take a FreeWheel for my chair. (See photo below.) It’s an attachment that enables your wheelchair casters to be lifted off the ground, turning your chair into a three-wheeler, so you simply roll over any obstacle: curbs, dirt trails, grass, gravel, snow, and sand. I couldn’t have gotten along without it. (To learn more go to https://www.gofreewheel.com/)

The FreeWheel attachment on the wheelchair’s front enabled easier passage.

When you go, strong friends, a FreeWheel, patience and perseverance are a must. Also remember to pack rain gear, a wheelchair repair kit, and layered clothing. If I can do it at my age, with arthritis and brittle bones, you can too.

For more information contact me at speters@msu.edu.

Bom Camino!

Susan Peters, Ph.D. is an Associate Professor Emerita at Michigan State University, College of Education. As a Fulbright Scholar and educational consultant for Ministries of Education, the World Bank, and UNESCO, her work focuses on inclusive education policy and practice for people with disabilities in cross-cultural and international perspectives.

In 2011 Martin Sheen starred in a movie titled THE WAY about one man’s journey to the cathedral. THE WAY is a powerful and inspirational story about family, friends and the challenges we face while navigating this ever-changing and complicated world. Martin Sheen plays Tom, an irascible American doctor who comes to France to deal with the tragic loss of his son (played by Emilio Estevez). Rather than return home, Tom decides to embark on the historical pilgrimage “The Way of St. James” to honor his son’s desire to finish the journey. What Tom doesn’t plan on is the profound impact this trip will have on him. Through unexpected and oftentimes amusing experiences along THE WAY, Tom discovers the difference between “the life we live and the life we choose.” It is well worth watching.

Check it out here: <br />

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The above story by Susan Peters, Ph.D. was first published in the Spring/Summer 2016 newsletter, SCI Access. Distributed annually by the University of Michigan (U-M) Spinal Cord Injury Model System within the Department of Physical Medicine and Rehabilitation, SCI Access is sent to 1200 readers in Michigan and across the country. For more information about this program that focuses on people who are living with a spinal cord injury, see their U-M website: http://pmr.med.umich.edu/SCIMS

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Thanks for Reading!

Want to add an adventure like this to your own To-Do List?

What do you think? Feel free to comment…

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Of That Unspoken Feared “Post-Polio Syndrome”…

June 15, 2015 by Sunny

And so, Way Back When: The Lost Anthology, continues to unfold…

This next contribution, chapter five, by the late Norene Seinkbeil was written when she first began to experience her own physical changes due to post-polio syndrome. So many of us felt her desperate sense of fear and a bewildering resurgence of grief when we learned there was no cure for what was to come–only management strategies. But, like Norene, most of us eventually figured out how to re-frame our priorities and perspectives on life–to move forward with optimism, grace and a renewed sense of purpose.

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Post-polio syndrome is a new condition that affects the survivors of polio decades after the acute illness of poliomyelitis. The major symptoms are pain, fatigue and weakness. New weakness is considered the hallmark of post-polio syndrome. Less commonly, survivors may have new sleep/breathing/swallowing problems and some survivors may also experience muscle atrophy or muscle wasting.

–Joan L. Headley, M.S.

For more information on post-polio syndrome click here:

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It’s How You Feel Within

–by Norene Senkbeil, polio survivor, (1934-2010)

We hide our fears,

Our weakness we somehow muster under

Go on and on and then…

The rumbles begin like thunder.

At first it’s just a little tired

And vitamins will help.

Some exercise, a little more sleep

Just get a hold of yourself!

Then comes the time when there’s no push left,

“I can’t do that anymore”

And your family says “Come on, come on,

You’ve never been a quitter before.”

So you struggle up and say

“Yes that’s true.

I’ve been through so much already

I can beat this too!”

And then one day

That remembered day

You knew.

The rounds of doctors start,

And prayers flow from the heart.

Please Father God, not this again

This battle I must win!

But prayers go unanswered, weakness sets in

And pain, and most of all Fear.

Where will it end for me, Lord?

How will I be next year?

Take this my child and serve me well

Even if it’s just your example

People will know by your actions and faith

That my care is always ample.

But what can I do Lord, to further Your Kingdom?

Locked in this body, that hurts when it moves

These legs with unsteady gait.

Remember my child, Milton wrote long ago–

“They also serve who only stand and wait.”

Acceptance and peace begin anew.

Your heart can sing again.

There is a wonderful life for me now…

It’s how you feel within!

ABOUT THE AUTHOR

Norene Janet Shepard Senkbeil, 75, passed away January 1, 2010. She was born February 1, 1934 in Wheeling, WV. Norene grew up in Wheeling and attended Tridelphia High School. She married Walter Senkbeil in 1951 and they later moved to Tampa in 1960. Her love and devotion was directed toward her family and her church. Norene shared her creative gifts through poetry, painting and numerous arts and crafts.

In 1987, at the time she submitted this poem for the anthology, she wrote:

“In June 1955, at the age of 21, I contracted polio while living in Cincinnati, Ohio. I had two small children. I came down with what was referred to the as all three types. High and low spinal, and bulbar. Was in an iron lung, in a coma, and not expected to live. Then as now, the power of prayer prevailed and I gained strength. Was the first gentile woman admitted to the Jewish hospital, called Sheltering Oaks, for therapy. I gradually grew stronger, walked again and had three more children. Although many problems existed I managed to do just about as much as most moms did. Others in this situation know the struggle and how ‘we’ must try harder.”

The Search for Anthology Authors Continues…

Almost 30 years ago (1987), friends, Barbara Pike, Charlene Bozarth, and I sent out a nationwide request to polio survivors who might want to have their writings published in an anthology. Manuscripts came in, but life took over, and we were never able to create and publish the collection, as we had hoped. When I lost track of Barbara in Ohio, and Charlene, who left Michigan for New Mexico, I protectively stored the writings for resurrection at a later date.

Well, this year is that later date! I recently rediscovered them in my files, dusted them off, and now plan to take the liberty of publishing them by way of this blog. Some are essays. Some are poems. They are heartfelt, intimate and describe living with polio in earlier times. We can still resonate with their feelings and messages.

Here is a list of the missing anthology authors whom I would like to contact for permission to publish their work, now, so many years later. Since the publishing of chapter one, we have found five authors, but have many yet to find.

If you are one, or know of one, please contact me at sunnyrollerblog@gmail.com.

Thank you!

Sunny

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

If you appreciate the support that this blog can give to you and to others, please consider supporting it financially–offering your small gifts of encouragement to help keep the messages coming. Just click on the “donate” button at the right sidebar. Sometimes a little financial endorsement really makes a big inspirational difference…

Way Back When: The Lost Anthology–Chapter Three

April 19, 2015 by Sunny

Way back when, Mary Ellen Nyberg Hemby wrote about her experience as a mom with polio. Her words below reflect a tenderhearted relationship with children and their purity of spirit. May we fondly pause a moment to once again be caught up in the “springtime of life”…

The Best Wheels

There were once two little girls

who loved to play with wheels.

“Playing House” by Jim Daly

They pushed their dolls in strollers

before and after meals.

Roller skates, a bike, and a trike

all painted red and white

Kept them moving all around

from morning until night.

They pulled their new wooden wagon

all over in the sun,

and shopping carts in the stores

made shopping much more fun!

But Mama’s yellow wheelchair

had the best wheels of all,

To push and ride with Mama

all over the mall!

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People

Most people stand up straight and tall,

can walk and run with no help at all.

But some use canes or crutches, too,

to walk around like others do.

Some need braces or special shoes

for walking or running or whatever they choose.

And some people can just sit in a chair

And wheel around from here to there.

But remember that we’re all people, too,

We all like to play and go to the zoo.

We all love to laugh and sing and talk

whether we have to wheel or walk.

“Peckish Penquins” by John Dyer

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Later, when up against the late effects of polio, her positive, youthful spirit emerged as she reflected on what might come next …

Polio Survivors–Movement

Movement, from the day we were born, was an exciting, enjoyable experience. Crawling, running, jumping, and riding bikes made the process of getting there as exciting as being there.

As children, we explored and enjoyed every possibility–even with braces or crutches–we tried it all. We succeeded at things people said we could never do.

When we grew older, the movements became normal, for us, and many steps were made unconsciously–simply as a means to an end. The process wasn’t as important as the result. Unless the brace or crutch was changed or broken, we forgot our handicap.

Now, after so many years of succeeding, we have begun to contemplate every movement again. Each step is being carefully considered due to weakness, pain and exhaustion. We have needed to add more supports, and have compromised our independence with mechanical chairs.

paintings trees childhood children_www.wall321.com_8 bb

Unknown Artist

We, like children again, will confront the new challenge and learn to savor every movement–to succeed once more!

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About the Author

Mary Ellen Nyberg Hemby lives in Willis, Texas. She contracted polio in 1954 at age two in Nebraska and walked with one long leg brace during her younger years. After college graduation, she moved to Texas to escape winter weather. Mary Ellen worked as a Montessori teacher for five years. Post-Polio Syndrome was diagnosed in 1986 when she was married with two young daughters.

She recalls her past writings above, giving them a life context…“they were my way of adjusting to Social Security Disability Income with two small children. I visited their classrooms and talked about disability. One of my daughters, her husband, and their six-month old daughter now live with me. They help me with shopping and cooking and I help them love Isabel…I stay connected (to others by way of) the internet mostly. I try to find something to be positive about at each stage (of life). …God has a plan for all of us.”

Readers are welcome to contact Mary Ellen at menybergh@aol.com

Thank you, Mary Ellen.

May your abiding love for children continue to be a huge blessing for you. Kids desperately need all the love and attention we adults have ready to give them. And we also know that children are so very good for all of us way-too-sensible adults!

Still Searching…

If you are one, or know of one, please contact me at sunnyrollerblog@gmail.com.

Thank you!

Sunny

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Norene Senkbeil

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

Are you somewhere out there?

Whispered Messages From “The Afters”

December 10, 2014 by Sunny

“The artist gazes upon a reality and creates his own impression.

The viewer gazes upon the impression and creates his own reality.”

~Robert Brault

Recently, I was introduced to the work of Fran Henke, an Australian artist, writer and polio survivor who has re-envisioned three famous works of Degas, Modigliani and Rembrandt. Her series of paintings is called “The Afters.” It is an evocative trio of take-offs prompting the viewer to contemplate… after what? After whom?

For me, The Afters somehow emotes an ethereal spirit that whispers messages about the essence of women in our culture and then more specifically about the evolving social acceptance of women who have a disability. “Beauty is,” indeed, “in the eye of the beholder.” Or is it intrinsic? What is beauty, anyway?

Look for the braces and wheelchair. Listen for the whispered messages…

Left: “Little Dancer Aged Fourteen”; Edgar Degas; 1881. Right: “After Degas’ Little Dancer”; Fran Henke, 2014.

Left: “Seated Woman Weared In Blue Blouse”; Amedeo Modigliani, 1919. Right: “After Modigliani’s Seated Woman”; Fran Henke, 2014.

Left: “A Woman Bathing in a Stream”; Rembrandt, 1654. Right: “After Rembrandt’s Woman Bathing in a Stream/Selfie”; Fran Henke, 2014.

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As a viewer, what is your reflection about these before-then-after works of art?

What might the artist be saying about 21st century Western society’s view of women who have a disability?

What whispered messages do you hear from The Afters?

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About the Artist

Fran Henke is a busy Australian artist. She had polio in 1943, an isolated case in a small country town. At the time she was quarantined and felt fortunate not to be sent to Melbourne’s big hospital. Living with a post-polio disability, she read a lot as a child, and grew up wanting to become a career writer. The only way to do that and earn a living in those days was to be a journalist, so she did. Fran specialized in reporting about books and the arts. After 50 years, she retired as a journalist in Australia and overseas, and now lives in an industrial port town, on the Mornington Peninsula in South East Victoria. Upon retirement, Fran was able to go to art school and to write books, including artists’ books (see Smithsonian blog for a definition).

She also decided that since she had strong communication skills, she should use those skills to benefit people who also had polio. During the past 15 years, she has energetically campaigned for meeting the needs of polio survivors in Australia and worldwide.

Fran relates, “this Afters series came out of my belief that art needs to say something. When a U.S. polio survivor mentioned her discomfort at a Modigliani lady’s skirt length… I repainted Modigliani!” She lengthened the skirt, gave the chair wheels and the lady, leg braces. This year she has continued to revise and provide re-interpretation of beautiful women painted by the great Masters, Degas and Rembrandt. Ms. Henke has provided us with new, fascinating portraits.

Fran has worked with Redbubble, which is a Melbourne-based online marketplace for print-on-demand products based on user- submitted artwork. She also has her own website with full contact details: www.franhenke.com

Thank you, Fran.

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