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
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…
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.
Sunny
P.S. Have you ever thought about starting a post-polio wellness retreat in your area?
beautiful Colorado Rockies. It will be sponsored by Colorado Post-Polio and Easter Seals Colorado and is titled Colorado Post-Polio 2018 Rocky Mountain Getaway. It will take place from Sunday, August 19 thru Thursday, August 23, 2018 at the Rocky Mountain Village Camp in Empire, Colorado. For more information contact Nancy Hanson, Easter Seals Colorado, 393 S. Harlan St., Suite 190, Lakewood, CO 80226. Phone: 303.233.1666 x237 The original version of this article was published in Post-Polio Health: Winter 2018 (Volume 34, Number 1.)
Egads! This September 1st I am going to turn 70 years old. For me, that is an inconceivable milestone. Me, 70? How could that be? Seventy sounds so…well…”old.”
Turning 70 seems to be a natural time to pause and look at the big picture…to reflect and look back at important events. Rewinding through the years of my life…hmm…what do I see?
In 1952 I was just 4 years old, running, skipping through summertime sprinklers, then suddenly almost dying from “infantile paralysis”…
…then at the age of 12, listening and bopping in my braces and crutches to “Rockin’ Robin” on the record player…
…at the age of 17 in 1965, being voted class optimist at our fancy senior dinner and soon off to college…
…4 years later, having just turned 21, teaching English to my first class of very tall, very bright high school seniors…
…then just 31, becoming a college dormitory “housemother” trying to convince students not to get drunk and pull telephones out of walls or set off false fire alarms at 3:00 AM…
…then at 33, breaking down with the late effects of polio, soon to be working with with my newly found post-polio physician, starting my next university career teaching and researching all we could about what in the world was happening to polio survivors 30 years after they first got it.
All those years and experiences are pretty long past now. But they are still part of me and my personal gestalt every day. They are not lost. I do not grieve for them since they remain in my mind and heart as wonderful experiences that shaped my life and the lives of those I touched.
My difficult losses have been the heartbreak of losing friends, lovers and family members to break-ups or death. Can’t whale watch on the beach with the same boyfriend anymore. Can’t chat with Mom anymore over a 
long cup of coffee sitting side by side on the old screened-in front porch.
My toughest losses have also come as physical losses of strength and function. Can’t hear as well. Gotta get a pricey hearing aid soon. Can’t walk anymore. Gotta use a scooter full time. 
Can’t sleep at night free from the entrapment of a respirator face mask. Uuf!
It’s true, the older we get, as nature takes its toll, the greater life losses we must gradually come to deal with. We must learn the fine art of grieving over and over. It is a sad requirement if we really want to thrive during our late life years.
But how do we do that? How do we thrive in the midst of heartbreaking loss? How do we grieve well and then let go enough to forge ahead with grace and hope? It is not easy. But it is possible.
The only way I have been able to move forward after a life loss has been first, to cry my guts out and acknowledge my sorrow. Over and over. Then, when I am ready, and sick of being so sad, I work to reinvent a new reality and perception of my life. I look hard for some fresh gain in the aftermath of that debilitating loss. It can be a large gain or a small gain. Doesn’t matter. Just some gain. I work to reinvent my reality because I absolutely refuse to get stuck in the devastation which loss has the power to create, if we let it. Stomp! Stomp! That is not where I want to live every day.
About Loss From The Wise Elders
When I did a national study of fifteen “post-polio wise elders” in 2007, these role models for successful late life adaptation with a disability taught me about reconciling losses. One hundred percent of the group expressed that adapting to losses had been a major life challenge, beginning with the termination of normal physical functioning at polio onset. Loss of both function and the appearance of being an able-bodied (“normal”) person in society set off personal struggles from childhood until retirement.
Accepting early polio-related losses was difficult, and for some was still ongoing. One woman shared that she is just now dealing with her 
original polio losses: “I—it brings me back to seeing all those children in the ward that wouldn’t walk again. And I’ve never dealt with those images. [Sobs] Terrible!” By contrast, another man said that he sees his disability now as simply “a speed bump (or pothole) on life’s highway.”
Everyone in the group was also dealing with mid to later life losses that were both physical and social. The entire group (all were over 65 years of age) reported having the late effects of polio–new weakness, pain, and disabling fatigue in recent years. Most of the group had developed at least one new physical problem such as high blood pressure, edema, high cholesterol, and/or circulatory problems.
One woman shared how losing her accustomed level of mobility was 
difficult: “I had to give up. I couldn’t defy nature anymore. It was harder than (after) the first battle with polio.” A combination of shame, grief, and relief was expressed at having to use new assistive and mobility devices.
The other losses that these polio survivors described as difficult to reconcile were social losses. It was the painful descriptions of social losses during the interviews that generated the most tears. These included the death of a spouse and/or friends, moving to new locations and leaving old friends and family members behind, and retiring from jobs.
In spite of major life losses, the wise elders, who are people with complicated physical disabilities from polio, have shown us that by using the powers of positive reappraisal, it is possible to reinvent ourselves. Turn the negative around and make it a positive. We can reinterpret life after loss. Shift our focus from what we have lost to what we have left.
About Gain From the Wise Elders
Believe it or not, many of the wise elders agreed that, in spite of new functional losses, life is somehow better now, than when they were 
younger and physically stronger. Perceptions have changed. There seems to be a new freedom that both an evolved, more positive perception of disability and not being in the workforce bring. When asked for a word or phrase that describes life for them now, their responses included:
They began to transform their losses into opportunities for gain. A woman from the east coast shared that getting older doesn’t always mean 
getting worse. A new flexible schedule in retirement offers her the freedom to do what she wants, like browse for a long time in bookstores, Even though financially life is a little more restrained. Several people shared that their perceptions of others who have a disability have changed in late life, due to their own greater self-acceptance. They are more compassionate and caring toward others than in their more competitive earlier years, when they had to “push, push, push–use it or lose it.” One man even revealed that he enjoyed flirting with women in grocery stores now. He said “being older with a disability can give one license to ask for help and hugs…I’m an old guy and everybody thinks I’m not dangerous!”
These well-grounded role models teach us that on the heels of life’s deeply felt losses, potential gains swirl all around us. It’s not easy to see 
them at first, but as we invite them into view, and claim them one by one, it is possible to find the excitement in life again. In the process, we gotta ask for help and hugs.
Then, when we suddenly catch ourselves spontaneously flirting with a fellow shopper amidst the carrots and rutabaga during our next trip to the supermarket, we’ll know we’re back up and running again! It’s what I call “a wise elder effect.”
I’d like to take this opportunity to say “Thank You” to the wise elders for their comforting words and for living humbly as such inspiring examples. Some of these polio survivors have passed away. Most are still going strong.
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
_______________________________________________________________
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.
| 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:
========================================================
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
=============================================================
Thanks for Reading!
===========================================================
July Fourth. It’s Independence Day weekend in America; a time to celebrate that we live in the “land of the free and the home of the brave.” And this weekend, the national celebration also makes me think about my own sense of independence.
As a polio survivor for 63 years who has needed crutches, leg braces, and now a wheelchair and a scooter to get around, I was taught searing lessons about independence since the age of four. As children of the epidemics, we were immersed, even indoctrinated, with the goals of becoming fiercely independent as we went through our initial rehabilitation from acute polio. “Do it yourself! You fell down? Well, figure out how to get up on your own! It’s a cold, cruel world out there! You will always have to prove yourself to others,” were words I often heard from my parents and therapists. And they worked for me for a long time.
For fourteen-plus years, my 1950’s rehabilitation professionals convinced my family and me that I, as a young person who had a disability, was not sick, or defective. Neither was I destined to become a deviant object of charity. In fact, my mother always told me that I could do anything anybody else could do–just a bit differently. Our Wise Elders, the polio survivors in my national report, said they were told the same thing. One woman said she had a need to think independently from the time she was a young woman. She described how she traveled alone around the country and made other decisions that seemed imprudent to her non-disabled social group. Our stories of super achievement are numerous. But as we learned self-determination and self-respect, we were also taught not to be a burden on others.
WOW
Now that’s a loaded statement. One that needs unraveling–fast! A burden? What’s that? What does this concept called independence really mean to us today? Is it the flip side of dependence? If independent means not being a burden on people, does that mean we should have less self-respect as we demurely become a dependent thorn in the side of others when we do reach out for help? Excess baggage? An affliction to them? Should we feel guilty? Defective? Unworthy? OMG: independence versus dependence. Let the unraveling begin with a new thought…
It’s the Fourth of July in America. Our greatest document, other than the Constitution, is the Declaration of Independence. For people who are growing older with the late effects of polio or simply growing older with the late effects of life, I say we need to draw up a more evolved document: The Declaration of Interdependence!
Not independence. Not dependence. But interdependence: “the quality of being mutually reliant on each other.”
It makes total sense, if we can shake our old ways of thinking. Under the guidance of this new declaration, we can begin to move from needing to fly solo so as not to bother others and prove ourselves worthy, into a new and lovely blessed state of healthy exchange. “I ask you for new kinds of help and I give you the help you need that I am capable of giving.” It becomes a gracious and reciprocal experience that none of us will want to miss out on.
Trying to be that old kind of independent can be not only exhausting, but darn lonely. Working with a friend to plan a class reunion or a church event not only takes the load off me, but is a lot more fun. Who wants to do stuff alone all the time? That’s too independent! Trying to be strong and self-reliant can also be dangerous. Now while painting the fence or planting a garden, I could easily fall down, and then pop a bicep trying to push myself up from the ground. I say find a twenty-year old to do it. Then give him some of your best home baked cookies, some money and your full attention as he shares his life plans and interests. We have both gained from the experience. My friends and I trade favors. We drive each other to the airport and to our colonoscopies. I always have to drive my adapted car wherever we go, but my friends often chip in for gas. I listen intently to what my friends need to share with somebody and my buddies pay for dinner or buy me a device I can’t afford right now. It’s becoming easier for me to ask strangers for help when I need it too. We have always needed others and they have needed us. It just starts to look different as we age. As the poet says, “no man is an island.”
Who needs to do stuff alone all the time? (Photo: Bay Cliff wildflower taken by Paula Lemieux)
If we need more, we need to ask for more. No guilt. We still have much to contribute now; maybe even more, but in different arenas. We don’t need to prove ourselves in the mainstream workplace and keep up with our non-disabled competitors. We can make new disability-related adaptations and be content with who we are really becoming, and what we need to do to live well during our retirement years.
Growing older with greater disability can offer us a fresh sense of not only comfort, but also liberation. I love having a flexible schedule that I can coordinate with my energy levels. It’s great to have time to Skype or play Skip-Bo with kids, do my scrapbooking and card making, walk and roll with my friends along the river’s edge, and contribute to my special social causes. Another unexpected thought–because of feedback I’ve received, I think I have somehow become more beautiful in certain ways as I’ve aged. And that’s in spite of new fat, wrinkles and deformity. Maybe it has to do with personal essence. Not sure, but I think that phenomenon is possible for each of us. We can mysteriously become more attractive. In many important ways, life can be better in old age than it ever was in youth. Especially when we each figure out how to adopt our own personal Declaration of Interdependence.
So stay tuned! Next time we’ll focus on the sacred exchange of giving and receiving.
Until then, I’m interdependently yours,
Sunny
P.S. Weight loss update: I have shed nine pounds since May 13th. Much more to go. Onward!
—Many thanks to Sue Rasmussen for her editorial assistance with this post!—
The following piece was sent to us by the late Ernie Anderegg from Tuscon, Arizona. He wanted it to be published in the post-polio anthology back in the late 1980s. This poem is a tough one to read because it so concretely describes the anguish and adversity that polio brought to so many newly-paralyzed children and their heartbroken families. The experience was absolutely devastating on so many levels and can bring back mournful images and memories that are still buried deep within.
But wait! Out of the desolation, Ernie expresses his pride in being a polio survivor and reminds us that the powerful spirit of love and our enthusiasm for living life prevails …
Who are these polio Survivors?
Infants, only days or weeks into this precious life;
Lifeless and aching in paralytic strife.
Toddlers, removed from their bonding with kin;
to a world of strangers and loneliness therein.
School-age tots, healthy, vital and well;
with an untimely sentencing to a strange form of Hell.
Young adults, men and women alike;
not quite able to evade this phantom’s strike.
With febrile delusion and limbs that would fail;
Like rag dolls–languid, flaccid and frail.
Parents of whom were often alerted,
“Go home to your family, death cannot be averted.”
But we heard not the dirge, we made no departure;
and we all cheated death to pursue life’s adventure. 
Now challenged by life to rebuild and maintain;
the Polio Survivor will gain and regain.
With lost weeks and years in sterile abandonment,
maturing, enduring this foreign environment.
Spanning the spectrum from newborn past twenty;
Their good lives disrupted–tears shed aplenty.
With racking pain in uphill progression,
who’d ever believe we would relive regression?
But through this all we bore the test;
and still proclaim we are the best.
And drawing from our days on trial,
When we all pushed the extra mile.
The common thread running through our lives
was…
About the Author
Polio survivor, Ernest J. Anderegg, Jr., age 68, “ended his earthly journey at home on March 29, 2015. Born on December 1, 1946 in Jersey City, NJ to parents Ernest and Lillian Anderegg and survived by first wife, Beverly Anderegg; two children, Darrin and Renee; three grandchildren and two brothers, Warren and Gregory Anderegg. As a polio survivor he became a strong advocate for the disabled community and instrumental in establishing the polio EPIC group. His presence will be missed and treasured by family and many beloved friends. He was admired for his wit, appreciation of the value and comfort of friendship, and particularly for his strength and equanimity in the face of chronic pain. He was a profound poet and writer who earned the title of “Distinguished Poet” on Poetry.com.
Of his life he wrote, ” (I am a) polio survivor of the 40’s epidemic (spino-bulbar) who has spent a lifetime ‘trying to pass for normal’ (a term used by survivors). In my old age there has been a number of concessions, physical and psychological, that directed me to writing to express and vent. Watching the natural course of things in an analytical way, I am able to draw from life experience to leave my thoughts, strengths, personal spirituality for family & friends to cipher after the fact.”
Ernie was a founding member of the flourishing post-polio support group, Polio Epic, in Tuscon, Arizona. Current group president, Micki Minner, enthusiastically shared with me that Polio Epic is a dynamic, ever-enlarging support group with strong programs and powerful outreach. It attracts folks from all over the state to their regular meetings. To learn more, check out their website here… 
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 three more 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
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
Where can you be?
P.S. Quick report on my weight loss program: since May 13th I have lost 4.5 pounds. Onward and upward!
Do you ever shop on Amazon? If yes, next time you do, if you would go to any Amazon link on this blog (like the one below) and do that day’s shopping, it would
help me a little too, providing a small commission. There would be absolutely no difference for you, but there would be a small boost for me. We would both end up winners that day! Thanks for considering this win-win option.
The links below and throughout this blog are affiliate links. This means, at no additional cost to you, I may get a small commission if you stay on the link and make a purchase anywhere on that website. Thanks for your support in this way!
Bubbles fly on breeze 
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:
Here’s another semi-spontaneous example:
On Old Friends Making Life Work
Crispy trees green, grey
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!
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”…
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!
___________________________________
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
______________________________________________
Later, when up against the late effects of polio, her positive, youthful spirit emerged as she reflected on what might come next …
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.
Unknown Artist
We, like children again, will confront the new challenge and learn to savor every movement–to succeed once more!
______________________________________________
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!
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 two more 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
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
BOOK REVIEW
Just read an autobiography by polio survivor and actor, John Mahon. It’s titled, A Life of Make Believe: From Paralysis to Hollywood.
John Mahon
This is not a fluffy piece of writing. It is direct, curt and even discourteous at times. In it Mahon describes, incident by incident, his rowdy, turbulent, often agitated journey to become an actor–in spite of being marked by an arm that was obviously paralyzed by polio. For aspiring movie stars, achieving fame, fortune and a sense of professional security is far from easy now, and it was even tougher in recent decades. The 50s, 60s, 70s and 80s especially reeked with harsh disability discrimination. And in dealing with his physical imperfection in a body-beautiful business, John became a fighter–a good looking bad boy–who often barreled and bashed his way through life–chasing his heartfelt dream–to be an actor with a successful and fulfilling career on stage.
In spite of numerous disorderly encounters while working toward his vision of becoming a successful entertainer, John Mahon never, never gave up. He got shot down, rejected, and swindled, but he got right back up and kept on fighting.
His endurance reminded me in some ways of Winston Churchill, who fought World War II, 
persevered, and eventually won the peace. Churchill had so much to teach the world about the value of continuous effort and the courage to keep going.
He may not know it yet, but I believe John’s story runs parallel to each of our own life-with-polio stories. Our individual goals may have been different, but we each had to work so persistently and diligently to prove ourselves–to excel with a disability in a non-disabled culture. To survive, many, probably all, of us worked every day at minimizing a socially-obvious disability with braces or crutches; or at passing for normal, hiding an impairment, like a weak hand, that, if discovered, would reveal our “malformations.” I did it too. Whew. Makes me exhausted just thinking about it.
That was not easy.
At all.
Because as a reader, I vicariously trudged through John’s hellish-battles and hardships (fist-fights, doors bashed in, getting “canned”) with him in the first chapters, I was genuinely relieved to finally immerse in his later life moments of peace and soul-nurturing insights. I believe that age, experience, real love, and conscious efforts at deep introspection have awarded John with a hard-won personal treasure–his momentary and penetrating glimmers of God.
Thanks for sharing the following moments, John…
After a breakdown, John’s good friend, Jack, takes him in. John writes with gratitude about his peaceful Pacific coast moments…
Jack had rented an apartment on the second floor of a home located in the north end of Malibu, on a palisade overlooking the Pacific, with a panoramic view of the ocean and coastline. We all know the ocean has boundaries, yet, from that bluff, it appeared to travel into forever…that sight in Malibu was magic. In the evening I would listen to the sound of waves coming to rest. Sometimes they would roll in gently; other times they crashed onto the sand below. I can’t tell you how grateful I am for those many evenings viewing the most gorgeous sunsets and starlit skies imaginable.
A few years later, he describes how he was “touched by an angel”…
I once flew to Salt Lake City, Utah, where the series Touched By An Angel was being shot. When I walked into the makeup trailer, Della Reese was sitting having her makeup done. I remember her saying to me, “God bless you today,” as she rested her hand on my shoulder. I swear a feeling of peace and harmony overtook me…Meeting and working with such an unquestionably incomparable spiritual individual was a gift.
Laying out syntax that is not only brisk, but downright brusque, the author also describes a redeeming moment when he finally begins to find meaning in his disability…
Any number of times I had wondered why I was the one decked by polio. In 1979, walking on that sound stage, I may have discovered the reason. Infantile paralysis gave me an opportunity to help others; it only took twenty-nine years for me to discover it. My involvement with the Media Access Office[teaching the trade to young actors with a disability] made it clearer than ever that I had been living in two worlds: the gimp world, and the “normal world.”
John Mahon today
John’s book, A Life of Make Believe: From Paralysis to Hollywood, is filled with unique stories and snippets about the many famous movie stars he encountered as an actor–some he liked and respected; some he didn’t. From his seasoned actor’s perspective, he discusses his not-too-positive impression of reality TV today. From a polio survivor’s perspective he comments on the American with Disabilities Act. And from a father’s point of view he describes the ongoing devotion he holds for his children.
Mahon’s autobiography is also in a constant state of revision, John tells me. But I guess that’s true for all of us–as our perceptions and memories emerge, our life stories continue to morph and unfold.
If you are a movie buff and want to learn a little more about an array of great stage and screen stars like Al Pacino, James Garner and Broderick Crawford …if you want to get into a terse guy-story that is easy to read and definitely straightforward, then get yourself a copy of John Mahon’s new book.
Click on this link to have it sent right to your door:
To connect with John Mahon directly, write to him at: alifeofmakebelieve@gmail.com or find him on Facebook.
At the end of his narrative, John candidly reveals, “I have not considered myself successful in any typical, conventional, usual or ordinary way…
My success was in continuing the journey.”
____________________________________
P.S. I believe it’s much the same for most of us. When we’ve gone through hell, as Churchill asserted, we have indeed, kept going.
Through the tough times with a post-polio disability, that magical life spirit deep inside our souls popped up and nudged us forward.
Lately, as we’ve grown older, we’ve needed to astutely adapt and update our strategies and tactics a bit. And as we do, we demonstrate to those around us our visibly unique, but certainly viable ways.
May we all continue to proceed, flourish and endure as we … 
Winston Churchill, also known as “The British Bulldog”
If you enjoyed this article and would like to receive private updates about the newest post, consider becoming a subscriber. Just sign up at the subscribe box on this page’s right sidebar. It’s free and convenient.
Also, if you have a book you would like reviewed on this blog, write to me at sunnyrollerblog@gmail.com.
“Our lives are like quilts – bits and pieces, joy and sorrow, stitched with love.” –Anonymous
Linda Christianson loves to quilt. Writing her memoir, much like creating a quilt, must have given her an important chance to examine and then thoughtfully interlace the pieces of her life together.
As she put pen to paper, Linda had to examine and reflect upon each piece of her life– growing up as a child who was living with polio, starting a career as a young woman, getting married, having children and now enjoying grandchildren. Weaving with words, she put her life in order–just as the quilter does when methodically sewing together colorful fabric shapes into what eventually becomes a fully congruent work of art.
Taking a look at one’s life with polio can be a grueling experience that takes gut-wrenching courage. One must unearth those deep childhood sorrows, the agonizing emotional horrors, physical losses, and frightening medical lacerations. Then the writer must somehow put them into perspective–explaining the pain and healing process from an adult point of view. That’s a lot of work.
But the reward for that arduous research and reflection is being able to finally and fully see the fiber of our life as a whole–to know our personal story as its own unique, intricate, even awe-inspiring narrative. Once the big picture crystallizes, the question soon becomes “how will we choose to frame our autobiographical portrait?” What spin do we want to put on our life as a whole?
Christianson has clearly chosen her spin. As she reviewed her life’s difficulties, she also took a fresh look at all of the wonderful people, family and friends, who had influenced and strengthened her through so many decades. Having developed a strong spiritual life, she reassessed with gratitude the fortunate circumstances and beautiful places she has known.
As she revisited her hospitals, and recounted her numerous summertime surgeries, her split sized orthopedic shoes, crutches, and unwanted leg braces, she also described sunshiny childhood memories on the family farm…
“Despite the crutches, I was still able to get to the top of the corn crib, which was where we had a playhouse. We would build all our furniture and cupboards out of wooden peach crates left from my mother’s canning. Climbing up wasn’t very easy, but my arms were strong, and the slivers I got in my knees as I pulled myself up were easy to get out. What fun we had!”
Then moving forward, as we all do somehow, she described pulling herself through adolescence and up into adulthood. She worked hard, went to school, established a career as a helping professional, married, taught her kids to always do well at whatever they tried, and now in her sixties, is quoted as saying, “busy people always have time to help out.” Today Linda visits classrooms of elementary school children and is an invited speaker at community meetings. She wants to provide support, encouragement and a little enlightenment about life’s possibilities. She shares the “Four P’s” which are her personal guidelines for weaving a rich and colorful life:
1. “Each day must start with time for PRAYER using my Thomas Kinkade devotional book and having my first cup of coffee.” Her daily readings are from Beside Still Waters, published by Thomas Nelson in 1994. “It has the most beautiful pictures on every page.” She also reads Seasons of Light and Beyond the Garden Gate. “Any one of these books I can pick up and read and feel so relaxed from the words and from the paintings I find there.”
Click here to find Thomas Kinkade’s devotionals on Amazon
2. PRIORITIZING is very important for me as I always want to accomplish more than I should. Planning to do the things that must be done is necessary and then I can look ahead if my mind and body agree on doing more.
3. Next is PATIENCE as I [carefully place and strap] my long left leg brace [on my leg] so that I will be able to walk.
4. PERSISTING is just sticking with the project until it is completed.
Poliomyelitis, at a very young age, is the reason for all these “P’s.” I stay focused on them all day through, and with God’s guidance my days are wonderfully full. It is important to me that I live my life as a canvas, putting all the color I can into it.
Actually, I think Linda might want to incorporate a “Fifth P” into her schema that can be seen as a metaphor for what she is doing these days as a woman who had polio and has made life work.
That obvious “P” to me would be her productive, passionate and pleasurable post-polio pastime: Patchwork Quilting! She even says, “My favorite pastime is quilting– putting those pieces together to blend and make a most beautiful piece of art. It is like…. all the happiness and goodness…in my life.
“I weave in faith, and God finds the threads.” –Linda L. Christianson
Linda welcomes your messages to exchange ideas about quilting or to discuss her book about growing up with polio in rural Minnesota. To connect, send a message through her Facebook page. Or use this email address: llcallthesteps@gofast.am
If you would like to have a copy of Linda’s 93-page chronicle for your personal library, here’s how–click on the picture below…
