Attention Polio Survivors and Companions!

This will be the 11th and final Post-Polio Wellness Retreat at Bay Cliff Health Camp.

Attending this retreat feels like you’re living in a happy postcard!

It’s a wonderful time away.

Lake Superior is calling you…

Hope you will think about signing up for this post-pandemic opportunity to restore and rejuvenate.

Sunny

Smart Fun: On Becoming Pampered Campers and Smiling Sunrise-Watchers

On a deep-frozen wintry day in Michigan, it’s revitalizing to rekindle warm memories of our Bay Cliff Post-Polio Wellness Retreat last September…

Offered for the past 11 years at the Bay Cliff Health Camp in Michigan’s Upper Peninsula, such post-polio wellness retreats have created a wonderful opportunity for polio survivors.

The exceptional feature of these wellness retreats is that they have been designed to zero in on the unique and little-known needs of people who are growing older with polio’s late effects.

Located 28 miles northwest of Marquette, Bay Cliff’s woodland getaway is not only beautifully situated on the shores of Lake Superior; it is completely wheelchair accessible. This retreat’s venue and program design intentionally foster a safe haven for open exchange among polio survivors.  Everyone is encouraged to feel like part of a supportive family of friends.

These adult campers arrive, ready to learn and have fun. This year, over 40 polio survivors, along with friends and spouses participated in the retreat’s full range of daily programs that were designed to address wellness of mind, body and spirit. Everyone received individualized attention from a blend of volunteer retreat facilitators—post-polio physicians, counselors, nurses; physical, occupational, and recreational therapists; members of the clergy, and those from a wide range of other helping vocations.

As my winter reverie brings our Bay Cliff experience into even clearer focus, I realize that we were indeed having smart fun. First, we had intelligently chosen to learn even more about living with a post-polio disability. We were shrewd seekers of good health — reaching out to discover how to incorporate new positive health behaviors into our lives.

Every day we attended educational programs. Topics ranged from up-to-date information about post-polio syndrome, to exercise, to meditation, to tapping into our spiritual strength. People learned all kinds of new information and came to practical, often profound revelations.

Here’s one practical piece of camping information that Mark discovered:

“Powered chairs and crutches are much more effective in the camp environment than manual wheelchairs.   There is too much stress put on the shoulders with the manual lightweight chairs, especially when traversing the inclines around the camp.”

Perhaps as powerful, was the support and information that post-polio participants exchanged with each other. We openly shared life experiences that included many of our well-earned secrets for living a successful life with a disability.

Bonnie revealed:

“I find as I am held captive more and more by my advancing disability, more adjustments have to be made and sometimes I am not sure how or what to do.  Or sometimes, I am not aware that adjustments even need to be made because I am in denial or just have not come to the conclusion that things have changed.  At some points, I find I am owned by regret rather than taking action (or maybe less action in the case of PPS).  Being at Bay Cliff is so freeing…no pretenses… and I am informed by my own regret rather than being owned by it.  Sometimes it takes being with others who share your issues to realize problems need confronting, and I learn lessons on how to confront them in a safe, healthy way.“

As people shared many of their personal challenges and concerns, deeper friendships were nurtured.  And Frederick Maynard, M.D. international expert on the late effects of polio, continued to be one of our best friends. He not only was a primary founder of the program in 2006, he has also attended each year, providing medical direction and generously answering each person’s particular questions. During the course of every day, he could be seen freely helping retreat participants with medical advice and counsel, whether it was during a planned group session or in a spontaneous one-on-one encounter. As one camper disclosed, “Words cannot express the level of devotion and commitment that Dr. Maynard has for the polio population. I have grown to love and respect him for his efforts, knowledge and deep understanding of what we are going through. You can see it in his eyes.”

We were not only ready to learn; we were also ready to have fun. This often meant taking part in experiential learning opportunities, which were set up to be both engaging and enjoyable.  For one short week we had become pampered campers and smiling sunrise watchers.  Every activity was adapted for us so we could participate. We went fishing, swam, danced, sang, walked and rolled on nature hikes. We had lively fun in the balmy warm weather as we learned important tips on how to stay healthy. In our sixties and seventies, many of us had first-ever recreational experiences, like learning how to dye silk scarves or discovering how to use a bow and arrow.

On having fun, Cathleen conveyed:

“I’d never heard of the NuStep and really enjoyed trying and learning it. I thrilled to the recumbent hand-cycling with Don as we flew down a country road incline. He adjusted and fixed a bike so it fit me. Dr. Maynard kindly helped me walk into Lake Superior, however briefly! There were so many fabulous experiences that I can’t list them all. I’d never been fishing before and thoroughly enjoyed that sunny and relaxing afternoon in the pontoon boat on Lake Independence with Max, the expert fisherman. I loved the warm pool and helpful lifeguard. I remember the wonderful picnic in the sunny orchard and picking plums afterwards…”

Others described their retreat experience as:

“…a homecoming…mellow… warm… grounding… humorous…enlightening…  expanding… reflective…challenging…flirty…”

Oh, and before the week was up, we had adopted a crazy, new, original camp song destined to become a Bay Cliff classic. We sang it throughout the week to the chorus of the “Beer Barrel Polka.”  For all the brave songsters reading here, you may want to try singing it…

The Post-Polio Polka

Roll out the scooters

We’ll have a barrel of fun!

Whip on your braces

We’ve got the blues on the run!

Seize both your crutches

Sing out a song of good cheer.

Now’s the time to dance our polka

‘Cuz the gang’s all here!

 

We’re all at Bay Cliff

Happy to sing you this tune!

We “get” each other

And we’ll be leaving too soon.

Dance how you want to

Now we have nothing to fear!

Polio’s become our polka

‘Cuz the gang’s all here!

 

Catchy music, fresh air, new information, physical activity, emotional support…the positive impact of Bay Cliff’s post-polio retreat can be long-lasting.

Simply rekindling the warmhearted musical memories of our retreat has revitalized my own feelings of inspired renewal and loving regeneration. That’s a wonderful gift.

It’s a big bear hug on this very cold winter day.

Or, perhaps better said…

it’s a big Bay Cliff hug.

 

 

 

 

Scrunch! (that’s the sound of a friendly e-hug),

Sunny

P.S. Have you ever thought about starting a post-polio wellness retreat in your area?

 



The original version of this article was published in Post-Polio Health: Winter 2018 (Volume 34, Number 1.)

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.

Town

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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Nourishing the Body, Mind and Spirit: People, Pictures and Pasties

What a great time we had at the Bay Cliff Post-Polio Wellness Retreat this year!

Wonderful people, lots of pictures and finally an official Upper Peninsula (U.P.) pasty to take along for safe travels as we departed.

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In mid-September, 45 polio survivors and friends converged upon the tiny town of Big Bay, Michigan to immerse themselves in five days of restorative rest and activity. There is such a wonderful feeling of love, care and complete acceptance at the retreat. People instinctively understand each other and share compassionate support all week long. Smiles are on every face in the pictures because we are so happy together. There have been ten such retreats since the program started at the Bay Cliff Health Camp in 2006 and, boy, did we ever have fun this year!

race

Click on the photo above to see the first annual post-polio scooter race. Average age of racers: 72 years young. (Grrr! After an explosive start, I came in second. I’m already working on a hot new strategy for next year!)

Bay Cliff is located right on the shores of beautiful Lake Superior in Michigan’s Upper Peninsula. It’s a perfectbaycliff sunrise getaway spot for our holistic wellness program. The sun rises every morning directly in front of the lodge’s big screened-in porch. Rows of old fashioned rocking chairs invite us to settle in with our freshly brewed cup of coffee in hand to welcome the bright new day. The wind softly rustles through the tall surrounding hardwoods that are just starting to glimmer yellow and orange in the early daylight. The lake begins to sparkle as we inhale deeply, inspired by the crisp fresh air and the stunning sight before us… Cameras start clicking. Then the breakfast bell clangs through the camp grounds, heralding all to join in friendly fellowship for a family style breakfast. It’s 8:00 AM. The day has begun.

From Monday evening through Friday evening, the days were filled with a myriad of educational and recreational activities customized especially for polio survivors. We discussed how body, mind and spirit can all work together to create good health.

bracemakers 2

Fred Maynard, M.D. (top center) and our four orthotists. (left to right) Alicia foster, Ken McMaster, Michelle Carlson, and Joe Baczkowski teamed up to provide customized one-on-one bracing advice to participants at the “Bracing and Mobility” session.

BODY: We learned more about the physical aspects of having had polio–specifically the late effects of polio; what’s new from physicians, researchers and therapists. Throughout the week there was a variety of sessions on relevant topics such as, “post-polio pain,” “aging and general health,” “what’s best for you in bracing,” “food as medicine,” “acupuncture,” and “the benefits of massage.” Speaking of massage, everyone received a free one during the course of the week. Each morning we participated in exercise opportunities such as swimming, yoga, Tai Chi or cardiovascular workouts. Lots to do. One lady, new to the retreat, stated that her primary goal for attending was to learn about “how to keep moving.” She sure was moving every time I saw her!

MIND: This year we watched and discussed an excellent DVD on the mind-body connection and how scientific studies are proving the critical impact that the mind has on healing the body’s variety of illnesses. I highly recommend that you get a copy and watch it. It’s not only helpful; it’s also fascinating. Because it’s about 85 minutes long, this would make a great two-part support group program with discussion. For more information on this DVD, click on the following link: The Connection: Mind Your Body.

SubstandardFullSizeRender (1)SPIRIT: The presentation on spirituality this year was titled, “Spirituality for Wellness: Completing the Healthy Trinity of Wholeness.” After focusing on the wonderful power and value of inspiration in our lives, we got into small groups and discussed the following questions:

  1. What was a time in your life that was a real low point for you? A time when your inspiration had seemingly abandoned you, leaving you alone and miserable?
  2. What were some warning signs that alerted you that you were getting stuck in your doldrums?
  3. What did you do to reach out for inspiration that brought you out of it? Describe your avenues back to inspiration. Was it through your mind or body? Were there spiritual exercises like meditation or prayer that you tapped into? Where did your spirit lead you to rediscover your inspiration? What has worked for you?

The group came up with a long list of spiritual strategies and insights that have helped them get through discouraging times.

Beyond the educational content of the program, there were many recreational activities to join in on every day. These included accessible nature hikes, lighthouse tours, an ice cream social, coloring in coloring books for adults, table games, ceramics class, fishing, movies, and singing around the campfire–complete with s’mores (the American and Canadian campfire treat: a roasted marshmallow and a layer of chocolate sandwiched between two pieces of graham cracker).

Cornish-Pasties upFinally, on Saturday morning, as we were preparing to head home, our hosts made sure everyone got a homemade pasty for the road. Pasties are a special U.P. delight originally made popular by the Cornish and Finnish miners in the old days. They are made by placing an uncooked filling, typically meat and vegetables, on one half of a flat shortcrust pastry circle, folding the pastry in half to wrap the filling in a semicircle and crimping the curved edge to form a seal before baking.  U.P. insiders told us that the best pasties in the entire area come from Lehto’s Pasties in St. Ignace. They use the freshest meat and have been in business for 68 years.  Pasties are great for road trips. They are a tasty treat that can be a whole meal in themselves. No silverware needed!

As we left Bay Cliff, the joyful spirit of the retreat continued to linger long after. In fact, I tapped intocamp Sign that joy as I  wrote this message for you (smile) …

 

Thanks for reading,

Sunny

 

treesP.S.  Post-polio wellness retreats are a wonderful option for polio survivors who are growing older and seeking strategies to stay healthy and feel good. Since the first retreat at Bay Cliff in 2006, similar retreats have sprung up at Georgia Warm Springs, across Australia, New Zealand, and most recently in Colorado. Perhaps your group would consider organizing a retreat in your area? You’d need to start with an accessible retreat location and a group of skilled organizers. It can be done and is very rewarding.

What are your thoughts on this?

 

P.P.S.  I am happy to announce that I will be guest-speaking at the Power Over Polio Support (POPS) group in the Seabreeze Recreation Center at The Villages near Ocala, Florida at 1:00 PM on February 12, 2016. Group leaders tell me that if you are in the area then, you are more than welcome to attend. Looking forward to this event!

 

P.P.S.S. One major and recurring message from our retreat was how important it is to control the stress in our complicated lives. Having a disability can be more than challenging at times. And too much stress can ruin good health!  Here’s a nicely-written book that might help. Lately I have enjoyed reading the daily meditations in …  

runnP.P.P.S.S.S.  Personal weight loss update: my doctor told me to lose 10 pounds by Halloween. To date, I have taken off 11.5 pounds, which isn’t too bad I guess, since I was away from my routine at the exercise gym and healthy WeightWatcher’s eating plan for five weeks. Vacations.  Now I’m back and staying on track better. Whew!

Gotta keep going! 

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Can You Haiku?

 

Bye-Bye Winter!

Bubbles fly on breeze DSCN2682cc

Spring’s chilly warmth heats my soul 

Confinement’s blown off!


That was a Haiku poem. Haiku is a traditional form of Japanese poetry. Haiku poems are very simple. They consist of 3 lines.  The first and last lines of a Haiku have 5 syllables and the middle line has 7 syllables.  The lines rarely rhyme.

Writing a post-polio Haiku poem might be fun to try as an activity in your support group.

Here’s the formula:

  • First line (5 syllables): Focus close in. Describe an image from nature (or your surroundings) in concrete terms. It’s fun to describe a photo you may have, but not imperative.
  • Second line (7 syllables): refer or allude to a season of the year (spring, fall, etc.)
  • Third line (5 syllables):  Focus big. Shift, even juxtapose the perspective on your chosen image/subject in line 1 to a larger post-polio idea, concept or image. Think of words and things related to living with polio.

 

Here’s another semi-spontaneous example:

 

On Old Friends Making Life Work

Crispy trees green, greyDSCN2035aa

Witness our friendship’s summer

Wheels keep us moving.


What do you think? Can you Haiku? Could you write a post-polio Haiku?  Might be fun to try! Just follow the formula.

Hi Fran Henke, want to give it a go? Anyone else feeling inspired?

Oh, let’s just have fun!

Woohoo!

It’s springtime in the Northern Hemisphere!


P.S. If you enjoyed reading this article, you may want to subscribe–free of charge–to receive an email every 10 days or so, announcing the latest post.

Just go to the right sidebar here to sign up.


 


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The Colorado Post-Polio Wellness Retreat: Grasping Sweet Thorns in the Rockies

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It wasn’t the stunning mountain vistas 9,000 feet up, or the warm 90-degree swimming pool sparkling with joyful sunlight.  It wasn’t the cheery summer wildflowers popping up beside the woodland paths or the rushing waterfalls that met us as we wandered in and out of the nearby forests.

Nope.  It was the people.  And it was the polio. Somehow we had found each other and became freshly entwined. We, with our partially paralyzed post-polio bodies, made friends quickly, as if we had known each other since childhood.  

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Tree-top mountain view from the Georgetown Loop Railroad car.

Fifty-three of us attended the Colorado Post-Polio Wellness Retreat from August 17-20, 2014 at Rocky Mountain Village in Empire, Colorado. This experiential holistic wellness program for polio survivors featured guest speakers and planned activities revolving around three major themes: the mind, the body and the spirit. We slept in the Easter Seals camp’s rustic cabins, shared communal bathrooms, ate meals together in the large dining hall and joyfully participated in program sessions that ranged from aerobic exercise to zip lining. Yes…zip lining! We went on bird and wildflower hikes, and a recreational train ride through the mountains. We enjoyed a reflexology treatment, learned about post-polio syndrome, and heard about mindful meditation. Then we tie-dyed t-shirts. And that’s just a sampling of the rich program agenda. The entire retreat cost was $300.00 plus transportation.

At retreats like this I have found that we as participants each learn and grow in different ways, depending on what our life circumstances are at the time. What was going on at home? What new experiences and challenges had we been facing? What kind of people have come in and out of our lives lately? What new awareness about life was waiting to emerge? Mine became clearer and clearer to me each day of the retreat.stream

It was all about the flow and depths of compassion—that “sympathetic consciousness of others’ distress together with a desire to alleviate it.”  I saw it everywhere and was astounded by the amount of compassion these polio survivors had for one another. People connecting…polio survivors who had never met before feeling each other’s pain, need, grief, and joy…holding hands…hugging…crying…carrying cups of coffee for each other…picking each other up in golf carts to ease the daily trek around camp. One woman cried as she described to the group her plight as a young paralyzed Jewish girl hiding from the Nazis during WWII. We wanted to help her let go of her nightmare and replace it with love and optimism. Another woman anguished one morning at the breakfast table, expressing her fears about growing old, infirm and lonesome with a post-polio disability. Her kids don’t want to visit her anymore. She was in pain. We talked about making new and younger friends and transforming our homes into happy places that many will want to visit as we grow into late life.

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Reflexology treatments from one camper to another brought comfort and relief.

I have planned and attended nine post-polio wellness retreats since we started them in 2006 and this year the compassion I witnessed and felt was somehow exceptional.  At night in the cabin our group of women shared stories about how they became widows and got through the grief. It takes years and years to reconcile the loss of a true love. We listened and empathetically nodded our heads as one woman described her six-year road to healing from the sudden death of her husband–overcoming the disappearance of insensitive kids, returning to encouraging grief counselors and having many heart-to-heart lunches with friends in her book club. Two young women originally from India discovered they had both been cast off to orphanages there as young girls paralyzed by polio, then luckily adopted by American families. What they were delighted to learn was that now they only live a few miles from each other in Denver and with the help of public transit, can cultivate a warm friendship that may last a lifetime. If they had not attended this retreat, they might never have met.

Perhaps for me the most interesting reflection about compassion came during our large group discussion of spirituality and disability. It was when a lovely polio survivor named Karen told us all about an interlude she and her husband had encountered on a trip to Naples, Italy. They had found a monastery that had, over the years, necessarily evolved into a restaurant. After wandering in, they found a table, sat down and ordered their lunch. As they were waiting, a young priest asked if he might join them. They agreed and engaged in warm lunchtime chatter for quite a while.  Upon leaving, the couple rose and walked away toward the door of the restaurant. It suddenly became obvious to the friendly priest that Karen dragged a heavy brace on her leg and walked with a limp. Stunned with compassion he lovingly called out across the room to them both “Mia spina dulce!” rose(sometimes said, “il mia dulce spina”) in Italian. Translated, he was saying “my sweet thorn!” They looked back, smiled and never forgot what he had bellowed with affectionate sensitivity.

It was a commentary about the grace it takes to live well with a disability. Having a disability from polio is our thorn. It is the childhood stench of hot wet wool to rejuvenate weakened muscles, the pain of never being asked to a school dance or the terror of crutch-walking on ice and snow. It hurts, is unwanted, and can keep people away. How can this thorn be sweet, as the priest suggests? Therein lies our life challenge. Think of the rose.  At first as only a budding stem, it has ugly thorns, but as it grows and matures it becomes the most adored sweet-smelling bloom on the planet— the ancient symbol of love and beauty, a sign of compassion at funerals and the symbol of religious exemplars including the Virgin Mary.

I reflected that the nasty thorn, our disability, paradoxically supports, protects and raises us up to the grace, which is the rose in us–if we let it. We must accept it, make it work for us, and let the beauty begin. It is only with our thorn that we can ever hope to become a rose– as a rose is meant to be. That rose, that grace, is what I witnessed in Colorado. It was the overflowing of care and compassion these polio survivors had for each other. We deeply understood each other’s sorrows and thorns, softly embraced them together, and peacefully commingled to bless one another in many new ways. Only because we had grasped and accepted our thorn, could we offer each other the very rose we had become.

And…we had one heck of a lot of fun doing it!

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Another first-time zip-liner!

 

Happy New Year!  

What shall we look forward to?

 The next post-polio wellness retreats will be held on the shores of Lake Superior in Big Bay, Michigan in September 2015 and then high in the Rocky Mountains in Empire, Colorado in August 2016. Connect to Post-Polio Health International’s website for updates: http://post-polio.org/

 

Time for A Wonderful Escape–OR–How Would You Like to Try a Hot Dog Topped with Crushed Potato Chips?

Desktop4It’s almost winter. This is the time in the Northern Hemisphere that we dream of wonderful escapes to warmer places–close to the equator.

In 2012, I went on my first accessible cruise with an old friend. What a wonderful experience!  Hurrah for Celebrity Cruises, Inc! Hurrah for all of the disability-conscious tour guides– especially in Costa Rica and Panama! And hurrah for my friend who convinced me to try it!

If you ever get a chance, I would highly recommend that you try going on a cruise. A cruise is a very comfortable way to see faraway lands. And if you choose the right itinerary with port cities that are directly reachable from the ship, without any need for boarding an extra transport boat, you can’t go wrong. I would love to go again, but it must be on a very new and very big ship. Rumor has it that those freshly-built giant ships are the most convenient for people who have a post-polio disability. We sailed on the Celebrity Equinox and it was extremely wheelchair-friendly.

At no extra cost the ship had accessible:

  • staterooms
  • private bathrooms
  • balconies
  • public bathrooms (with both electric entrance and stall doors!)
  • elevators
  • theaters
  • gangplanks
  • chairlifts into the pools and hot tubs
  • destination tours to sign up for

And best of all, there were 1000 friendly employees who were always smiling and ready to help you with almost anything! (Remember to take enough currency for tips.)

We traveled along the eastern coast of Central America in January for 14 days. My favorite ports were in Mexico for good shopping, then Costa Rica and Panama for comfortable day-long tours. In Costa Rica we got to see and hear howler monkeys on an accessible howlerboat cruise down a jungle river. Then we peered out of our accessible train windows at indigenous two-toed sloths napping in the dense green equatorial foliage. We also recognized ripening yellow bananas hanging high above us in huge-leafed trees, as we slowly passed them in our accessible bus. Boats, trains and buses.

It was amazing that we could do all that.

In Panama my manual wheelchair rolled right onto the ramped cable car for a slow, reverent ride through the lush jungle rain forest. We rode in a wheelchair-friendly van across the country to the Panama Canal, and in Panama City stopped for the local treat–a hot dog with first, ketchup, then crushed potato chips on top. It was a delightful, salty taste treat for anyone immersed in Panama’s dripping tropical heat. (Somehow, when I excitedly served it to friends back home a few months later, it wasn’t critiqued to be quite so sumptuous. In fact, they agreed that it was a culinary creation that Martha Stewart would definitely ignore. Wonder why? Oh well. I liked it.)

Back on the room’s balcony that night, drinks in hand, we witnessed a dramatic sunset. Orange, gold, blue, black. Then as twilight transpired, I breathlessly gazed out at all the twinkling international cargo ships that were systematically lined up for at least 30 miles. They seemed so polite. They were each waiting their turn to pass to the other side of the world through the Panama Canal. Hundreds of ships, covering the ocean waters. In my mind’s eye, they became a glittering interwoven necklace of diamonds–a floating spectacle.  More gliding vessels captivated my imagination as they silently emerged on the distant horizon. I grew increasingly enchanted. I wondered about each ship’s home nation and destination, what they were transporting; about their captain and crew members– how their language and voices sounded when they spoke.  What color and design were their ship fatigues? Who, on which ship, might be sadly suffering an intense longing for someone halfway around the world? Who was missing a distant wife…husband…sweet-faced children…a lost lover…a tenderhearted mother?

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Ah, the world is so full of  wonderful people and places to see. And thanks to the Disability Rights Movement of  our generation, we now have opportunities to travel to distant lands where our wheelchairs and scooters, crutches and walkers never used to take us.

Now they do.

My friends, Bruce and Diane, are experienced cruisers. They especially enjoy joining folks for the annual “post-polio cruise.” It’s part of a Royal Caribbean or Celebrity get-away that embarks out of Ft. Lauderdale, Florida every winter for southern destinations. To learn more,  click on the Boca Area Post Polio Group’s Newsletter.

If you are considering taking a cruise for the first time, here is what they advise:

passport 2

To print a copy, click on HAVE PASSPORT WILL TRAVEL

Yes, it’s almost winter and time for a wonderful escape.

How would you like to sail to a distant land?  Would you even consider trying a hot dog topped with ketchup and crushed potato chips? Hmmm…

It might be your time.

hot dog

 

 

 

What are YOUR thoughts on this?

Ever been on a cruise?

What was it like for you?

Thinking of trying a cruise?

What questions might you have about such sea-faring adventures?

 

 

A Wonderful Wheelchair-Accessible Place to Stay in the Rocky Mountains

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Rooms with a view!

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Click on this logo to see more.

Oh my goodness! I want to share with you a great place to stay if you ever get to Estes Park, Colorado. It’s the Appenzell Inn.

I have vacationed there twice now and I love it! Was just there last month. Reminiscent of a Swiss alpine lodge, the Appenzell is conveniently located right on the paved Riverwalk in Estes Park. The Riverwalk is a meandering sidewalk (at least five miles long) that, on a scooter, walking, or using a manual wheelchair leads you right into town, to the Visitors’ Center, or around Lake Estes depending which direction you want to go. The hotel has a year-’round indoor heated pool with a chairlift. In the summertime, visitors are delighted by a host of colorful flowers at every turn and are greeted by surprise brooks, ponds and waterfalls nestled into the landscaped grounds.

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Those who dine on the restaurant deck enjoy the sounds of this lovely water feature.

At the Appenzell there are several wheelchair-accessible rooms, but my favorite is the Patio Room on the ground level. It has easy access from close parking spots and a cute patio right outside the room’s entrance door. There is also a nicely ramped hotel dinner-only restaurant next door and up a story that is open in the summer and provides room service.

Lunch on the patio right outside the room.

Lunch and chit chat on the patio right outside the room.

When you enter the Patio Room you’ll see that there is a small kitchenette, a comfortable king size bed at the perfect height for a wheelchair-user and an accessible bathroom. You can ask the hotel for a bath bench right now, but they plan to renovate soon adding a roll-in shower and an ADA-height toilet. I love the three windows that allow dappled mountain sunlight and fresh air to permeate the room. If you want to be cozy both at night and early in the cool mornings, the centrally located gas fireplace turns on with a timer switch. As it crackles and warms, sipping on a hot cup of room-brewed coffee or tea is a heavenly touch. The built-in dining table and desk are the right height, easy to access. If you move some furniture around a little, there is lots of floor space for wheeling. Two difficult things: the microwave and kitchen sink are high and tough to use, but the dishwasher and fridge are easy to reach. Prices for this room are seasonal and range from $110.00-$180.00 per night.

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There is a wheelchair-accessible campsite at Sprague Lake near Estes Park.

Estes Park, Colorado is a gorgeous place to visit. About 8,000 feet up, it is at the gateway to Rocky Mountain National Park. There are many paved hiking spots and even an accessible campsite or two in the area–great for anyone with a post-polio disability.

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We saw this guy right outside our room at the Appenzell Inn.

There are many kinds of wildlife around–elk, moose, big-horned sheep and bears. Sometimes they like to amble into town for a swim on a hot day in the river or for a bite to eat from the trash bins behind restaurants.

When I visited Estes Park I rented a fairly large scooter that could steady me on the slanted sidewalks. Travel scooters are tippy on mountain terrain. All I had to do was call Mobility and More in Loveland, CO. They delivered and picked up the scooter and were very cordial. Click here for more information.

If you want to have fun in the stunning Rocky Mountains, go to Estes Park and stay at the Appenzell Inn and enjoy the wonderful walks into town and around the mountain lakes…

Right behind Starbuck’s along the Riverwalk…Shop StarbucksStore.com

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As you’re rolling into town…

Do you know of any great places to stay that really work for wheelchair-users or crutch-walkers?

Would love to hear about them!

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“Wheel-friends” at Sprague Lake!

Wellness Retreats

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The Colorado 

Post-Polio Wellness Retreat

August 17-20, 2014–Rocky Mountain Village–Empire, Colorado

Fifty-three of us attended the Colorado Post-Polio Wellness Retreat from August 17-20, 2014 at Rocky Mountain Village in Empire, Colorado. This experiential holistic wellness program for people living with polio featured guest speakers and planned activities revolving around three major themes: the mind, the body and the spirit. We slept in the Easter Seals camp’s rustic cabins, shared communal bathrooms, ate meals together in the large dining hall and joyfully participated in program sessions that ranged from aerobic exercise to zip lining. Yes…zip lining! We went on bird and wildflower hikes, and a recreational train ride through the mountains. We enjoyed a reflexology treatment, learned about post-polio syndrome, and heard about mindful meditation. Then we tie-dyed t-shirts. And that’s just a sampling of the rich program agenda. The entire retreat cost was $300.00 plus transportation. cabib

It wasn’t the stunning mountain vistas 9,000 feet up, or the warm 90-degree swimming pool sparkling with joyful sunlight.  It wasn’t the cheery summer wildflowers popping up beside the woodland paths or the rushing waterfalls that met us as we wandered in and out of the nearby forests. 

Nope.  It was the people.  And it was the polio. Somehow we had found each other and became freshly entwined. We, with our partially paralyzed post-polio bodies, made friends quickly, as if we had known each other since childhood…

roseRead my entire article, “The Colorado Post-Polio Wellness Retreat: Grasping Sweet Thorns in the Rockies,” later on this blog!

P.S.  If you have never been to a post-polio wellness retreat, you may want to consider signing up! They are filled with fresh air, fellowship and lots of educational and recreational activities. The next post-polio wellness retreats will be held on the shores of Lake Superior in Big Bay, Michigan in September 2015 and then high in the mountains in Empire, Colorado in August 2016. Connect to Post-Polio Health International’s website for updates: http://post-polio.org/