Tag Archives: spirituality and disability

Zest at its Best: Wheeling Through Portugal and Spain

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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 imagesvvvto 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.

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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.

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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.

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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.

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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.

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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/)

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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: 

 

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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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On Giving: An Epiphany in the North Woods

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Giving to others is a good thing. Once in awhile, when cruising in for an afternoon latte at our Starbuck’s Drive-Thru, I warmlove to anonymously buy coffee for the person in line behind me. And then I zoom away–before they find out! That small gesture actually makes my eyes twinkle. Newly energized, it fills me with a quiet merriment as I chuckle and head into the rest of my day.

Generosity has actually been shown to stimulate happy feelings that light up centers of euphoria in our brains. In one study, brain scans revealed that when people made the decision to donate to what they felt was a worthy organization, the brain’s mesolimbic system lit up. This system produces dopamine, which makes us feel good. (See Hard-Wired For Giving and The Man Who Couldn’t Stop Giving)

Further, other scientists purport that generosity can even be an effective antidepressant. Wow. That would be much better than depending on expensive pharmaceuticals! If you are ever feeling down, I suggest that you reach out to another person with a small act of generosity. Spirits will be lifted in no time! Give someone a flower or a friendly phone call. Or, how about 37 cents?

“Why 37 cents?” you may ask.

Fifty-four years ago, in a remote village in the north woods a stranger’s small gesture gave me the chance to learn a huge life lesson. I’d like to share my story with you.

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When I was fourteen years old, I experienced a moment of enlightenment about the virtue of random acts of kindness. For me, it was an unmistakably spiritual experience.  Back in the 1960s my church youth group went on a missionary trip to Rapid River, a tiny town in Michigan’s Upper Peninsula. During the day, all thestream (2)aaa little kids in the area would come to the church for Bible School, which we led. Then in the evenings our group of teenage missionaries would enjoy a variety of social activities together. Well, one night, we all walked down to the A&W Drive-In for ice cream. I was happy to keep up with the gang, hobbling on my braces and crutches for the three-block adventure. I felt so accepted. We were having fun, joking with each other and goofing around. After we each purchased our evening treat, we strolled back a different way– this time through the center of the tiny town. It was a route which took us in front of the local bar. As we walked past the tavern’s old wooden entrance door, a drunken local stumbled out. He immediately spotted our group and suddenly zeroed in on me. “Hey, girl!” he slurred, for all to hear. The entire group abruptly stopped walking. The kids’ eyes widened and quiet gasps came from a couple of the girls. Then dead silence. I stood still as the man approached me. He outstretched his hand to me and said, “Here girl. You need this more than me.” He dropped 37 cents in nickels and pennies into my hand and staggered across the street into the darkness. Now hushed, our once joshing group just silently walked. I especially, was speechless. But more than that I was so embarrassed. Then I got confused and shook up, but tried not to show it as we headed back to the church. Why did that man pick me out of all those kids? I had tried so hard to fit in with the group, but once again was forced to be the peculiar, atypical one. At least that’s how it felt to a teenager desperately seeking peer group acceptance.

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Located inside the Hiawatha National Forest, Rapid River has a population of 1,492 and is near Escanaba, Michigan along U.S. Highway 2. It’s a great place to go fishing if you’re ever up that way!

A little while later, my minister found me sitting on the front steps of the church under the night sky, looking up at the stars and down at my slightly deformed feet, just thinking. He sat down beside me, put his arm around my shoulders, and shared that he had heard about what happened. Sad and confused I shared the story from my perspective.

That’s when he taught me the life lesson I have never forgotten. He predicted there would be many times in my life, because I had such an obvious disability, that people would want to give me help–in good faith–even if I didn’t need it. He taught me that I then would be blessed with an opportunity to help them, strengthen them and love them by graciously accepting their gestures of kindness whenever possible. I did not need that man’s 37 cents, but by thanking him for it I would have been giving him the opportunity to be blessed in new ways. Somehow, my gratefully receiving the 37 cents would have made life a little better for both of us.

In her sermon just this past summer, my church pastor, Lori Carey, unknowingly expanded upon my teenage epiphany. She explained that every so often in life, just like that night in Rapid River, an amazing opportunity opens up. We are called to engage in a sacred give and take when two souls can connect and feel the presence of God.  There is an interesting thing that happens in this exchange of give and take. The roles of giving and taking become blurred. You see, the one who gives can only give if the gift is accepted. Receiving the gift is a gift in return. Suddenly, in the act of give and take, the giver receives the acceptance of and connection with the receiver– and the receiver becomes a giver by accepting the gift. Both parties give and receive simultaneously. We seamlessly move between both.

Perhaps we’ve learned somewhere that the receiving part is not as important as the giving part. Not true, she went on to share. Graciously receiving completes the act of giving and unifies the giver and receiver. It’s a beautiful mystery.

I’ve never forgotten that long-ago 37-cent encounter way up in the north woods. I discovered that whenever I receive graciously from another person, that suddenly becomes my opportunity to become a generous, loving giver as well.

It’s true. That stranger’s meager handful of change initiated a million dollar lesson for me.

 

 

Thanks for Reading,

Sunny

 

A great big thanks to Pastor Lori Carey, Rosalie Meyer, and Susan Rasmussen for their thoughts and words. They helped shape this post.

 

P.S.  Weight loss update: Aaargh! I have lost a tiny bit of weight since I last reported! My loss since starting in mid-May is only up by 1/2 lb.– at 9.5 lbs. total. I continue to work out 2-5 times a week on the NuStep and eat WeightWatchers recipes. The problem: my gym was closed to me for one whole week and my food portion sizes are not controlled enough. Bummer. But I refuse to become discouraged and give up!  I know what I need to do.  Any advice or encouragement you might have sure would be appreciated today!

 

sr exercising 2Oh! Did you see the recent company blog post from NuStep?

Click on this link: NuStep for polio survivors

 

 

 

 

 

 

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Of That Unspoken Feared “Post-Polio Syndrome”…

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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:  phi logo

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shadowxxIt’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!

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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 already17711cc

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 wellgeranium

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.P1000934xx

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.”

 

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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…

 

A Couple More Thoughts on Spirituality and Disability

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“Pain Passes. Love lasts a lifetime.” (anonymous)

Quite often during my lifetime with a socially-obvious disability from polio, I DSC04588 thotshave lived as a human optical illusion.  Visually, I unintentionally convey a false impression to those who first see me. I am not always what I seem to be.

How many times have you seen strangers look at you with great pity in their eyes?  Or say things like, “You poor dear, it must be horrible to be confined to a wheelchair.”  How many times have you encountered misguided religious zealots in shopping malls who want to convert you and heal you on the spot because they assume you are weak and pathetic? Once, an old drunk stumbled up to me on the street. Singling me out, he handed me 35 cents in nickles and pennies and said, “here girl, you need this more than me,” then staggered away. I was 14 and with a bunch of suddenly dumbstruck teenage friends. So much for fitting in.

Ouch! That kind of stuff is painful.  Heavy sigh…guess I’ll never be good at making great first impressions.

I believe that those crazy encounters are generated by well-meaning, but sorely limited people, who see life mostly on a physical plane. They are the self-called realists who connect disability to discontent and human deficiency. They are the people who don’t really know us.

But what is it, exactly, that they don’t get?

Plenty!

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Personal Reflection Number One…

They don’t get that as we polio survivors grow older and wiser (see The Wise Elder Report above) with our disability, most of us have built strong social support networks. As Maya Angelou said, we have learned that “love saves us.” We enjoy life. We tap into being optimistic and have grown into greater, deeper self-acceptance. We have learned to use our assertiveness skills to our advantage and are well-educated. Finally, we are often spiritually tuned into powerful unseen dimensions because, thankfully, our disability has taken us there. And, for me, that last point is huge.

I believe that each of us has deep inside, a divine spark. It is a glimmer of God, a radiance and purity that longs to be affirmed. It is also a glimmer of God that affirms us and keeps us strong when we tap into it.

“Pain passes.  Love lasts a lifetime…”    I say, (stomp! stomp!) forgive and forget the pain, the false assumptions, the heartbreak, the goofy statements. Dwell in the love!  It works better!

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Personal Reflection Number Two...

But how do we tap into our spirituality? There are so many avenues. For starters, here are three simple ways I’ve used to connect with my spiritual self:

1. Meditate. Meditation is a mental exercise designed to bring about a heightened level of spiritual awareness and trigger a spiritual or religious experience.

Living alone and being semi-retired, I have extra time these days to sit quietly and meditate in the morning, which I love. Polio has relentlessly requested that I become more sedentary than ever, which I fought at first, but have found has at least one hidden advantage. I can relax and take time to focus on the positive–in the here and now. When I focus on the life force inside me, I find the experience to be renewing and calming. It also fills my brain with delightful and surprising new insights and ideas. So, the experience I am describing is–being still, and then calling upon God to be with me in the present moment. The experience soon turns into a two-way prayer.

Intrigued? Ready to learn more about this ancient practice now embraced as good for people of all ages in our nerve-racked culture? There are lots of good books out there on meditating. Check out this Amazon link: books on meditation Anyone have a favorite reference on meditation to recommend to others? 

2. Stay home or get together at a friend’s place and watch inspiring programs on television like the Super Soul Sunday shows that Oprah presents on her OWN TV channel, Sunday mornings. A wide range of fascinating guest speakers discuss matters of the soul with Oprah Winfrey. These guided conversations can be fun to tape and watch throughout the week, as well. She also has an appealing Facebook page you might want to check out.

3. Join kindred spirits at your chosen house of worship. For me, my spirituality and my religion are great equalizers. At church we are more than our physical bodies; we have a spirit to share and we share the Holy Spirit. Many of us need that social connection and that spirit connection to get through everyday life.

When I was a younger woman living with polio, I had several personal experiences with my church friends that were transforming. I call them “feeling the presence of God” or “Holy Spirit moments.”  Like the time I was sitting in my girlfriend’s big country kitchen with her. It was Christmas time and we were anxiously struggling to resolve some big life issue. Christmas carols softly filled the room with angelic melodies. The aroma of cinnamon potpourri simmering on the nearby stove calmed our senses. Her Christmas tree sparkled from the next room.  Suddenly she looked across the room and softly affirmed, “God is here with us.” Surprised, I stopped chattering. She was right. I felt engulfed by a mysterious sweet and calm presence. And in that moment we both knew everything we communally worried about that day would be okay. And it was.

And those are just a few ways to connect with our wonderful spirit within–with a vigorous, compassionate love–that certainly surpasses all pain.

sunn rAfter working my way to the ending of this post, all I can conclude at this moment is, “in the grand scheme of things, who cares that much about first impressions anyway!?”  

Being underestimated can actually be fun at times. It has given me many convenient chances to surprise–even stun people–in all kinds of positive ways.

And woohoo!    

That is rewarding–for everybody.

 

Onward and upward!

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What inspires you?

What might be some simple ways you have tapped into the spiritual part of yourself?

Sharing one idea here may help someone out there re-connect with the light inside themselves…

 

–Special thanks to my young friend, Catharina Rink, for sharing her recent photos (above) of Australian seascapes, as she is on an adventure and pilgrimage to discover the wonders of that vast country this year.   Currently in Melbourne.  Next stop: New Zealand!–

–Also many thanks to Catharina’s brother, Sebastian, who took the two photos of me at a favorite coffee shop while in Germany. Sebastian celebrates his 16th birthday this week! Vielen Dank, Herr Rink and alles gute zum geburtstag!–

 

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