Find A Gain for Every Loss: A Lesson from our Post-Polio Wise Elders

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:

 

  • Comfortable
  • Flourishing
  • Grateful
  • Excellent
  • Open
  • Wonderful, full, happy
  • Satisfying, good
  • Hopeful–filled with a sense of anticipation
  • Good, fulfilling
  • Better than expected–like a dream come true

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.”

 

Yup! Next month I turn seventy…time for a little levity…carrots and rutabaga, here I come!


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.

Zest at its Best: Wheeling Through Portugal and Spain

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The Cathedral of Santiago de Compostela

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

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

Sunny

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

By: Susan Peters with Sunny Roller

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

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

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

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

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

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

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The countryside.

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

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

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The cuisine.

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

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

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

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

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

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

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

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

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

 

Bom Camino!

 

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

 

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

Check it out here: 

 

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

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Thanks for Reading!

 

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

What do you think?  Feel free to comment…

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Messing With The Great Pumpkin

images gpAhhh, the Great Pumpkin! Remember the famous story by Charles Schultz? Linus sits up wide-eyed agonizing  all night under the stars–in the dark chilly pumpkin patch–faithfully waiting, waiting, waiting for the wonderful Great Pumpkin to appear. Sorta like Santa appears on Christmas.

It is a story of great faith on Halloween. Many say that, “Linus’s interpretation of Halloween renders the Great Pumpkin a symbol of hope and expectation.” And I ALWAYS wanted Linus’ Great Pumpkin to appear. I really, really did. I wanted the miracle to happen.

Well, Linus’ envisioned Great Pumpkin never shows up. Heavy sigh! Sad, but true.

So lately, whenever I have seen this Halloween special on T.V., I have pondered,  “how could Linus have averted this discouraging tragedy? How could any of us who are living with the late effects of polio (or the late effects of life), turn this story of dashed hopes, and repeatedly unmet expectations around?” Have you been waiting and waiting for something that hasn’t come? Have you sat in your proverbial pumpkin patch too long?

Well, I have! And I decided that maybe I need to quit waiting submissively for that wonder-squash to magically appear and go after what I want. Take action! Maybe I need to slightly alter my vision and create a somewhat different dream in my mind that’s more me. More possible. Maybe even more interesting. Don’t change it completely, just tweak it a little. And then do something. Go after it!

So yesterday, here’s what I did…I took expectations into my own hands and went to my kitchen. There I created a new pumpkin…it’s not The Great Pumpkin, but it’s my pumpkin…do-able…likeable…

 

It’s the…

grape pumpkin

 

“GRAPE PUMPKIN!”

 

 

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And so, it is in the spirit of enjoyment,  

merry -making and 

The Grape Pumpkin

that

I wish you a very

Happy Halloween!

Thanks for Reading,

summer.jpg

Sunny

 

P.S. Here’s a Great Pumpkin Soup recipe

you may want to try this season…

linus

From my friend, Susan.

4 cups mashed pumpkin
1 quart chicken broth
2 T orange zest
1/4 teaspoons each cinnamon and nutmeg
2 T fresh grated ginger root
1/2 to 1 cup of orange juice (or juice of 1 orange)
Salt / pepper to taste
Let simmer in a crock pot.

 

P.P.S. Weight loss update: Well, I checked in with my doctor yesterday, who read my blood test results.

Gulp. I was nervous.

She said that after losing 11.5 lbs., my liver is back to normal, and my glucose is down. No medication needed!  Yahoo! It can be done!

Next she told me to lose another 10 lbs. by May 1st. So I’m not quitting! ( I think I still slightly resemble our friend, the Great Pumpkin, when I see my profile in a mirror.)

She said that I must vigilantly track my food for the next 30 days in a row, especially since the holidays are coming up. Okay. And that I might want to try a little light weight-lifting to help me lose more weight. She said studies prove that that can help. (What have you read about that for folks with the late effects of polio? Anything?)

She also said that I can tell all you guys she is WAY PLEASED with the progress, so far.

Thanks so very much for your

help and support!

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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.

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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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On Giving: An Epiphany in the North Woods

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

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

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

“Why 37 cents?” you may ask.

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

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

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

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

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

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

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

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

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

 

 

Thanks for Reading,

Sunny

 

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

 

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

 

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

Click on this link: NuStep for polio survivors

 

 

 

 

 

 

Starbucks

Celebrating Independence Day Makes Me Think…

…About Moving From Independence to Healthy Interdependence

 

DSC03697 flagJuly 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.”

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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!—


What are your thoughts on all this? 

Would love to read your comments…


 

Of That Unspoken Feared “Post-Polio Syndrome”…

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

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

_________________________________________________________________________

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

–Joan L. Headley, M.S.

For more information on post-polio syndrome click here:  phi logo

__________________________________________________________________________

shadowxxIt’s How You Feel Within

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

We hide our fears,

Our weakness we somehow muster under

Go on and on and then…

The rumbles begin like thunder.

At first it’s just a little tired

And vitamins will help.

Some exercise, a little more sleep

Just get a hold of yourself!

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

“I can’t do that anymore”

And your family says “Come on, come on,

You’ve never been a quitter before.”

So you struggle up and say

“Yes that’s true.

I’ve been through so much already17711cc

I can beat this too!”

And then one day

That remembered day

You knew.

The rounds of doctors start,

And prayers flow from the heart.

Please Father God, not this again

This battle I must win!

But prayers go unanswered, weakness sets in

And pain, and most of all Fear.

Where will it end for me, Lord?

How will I be next year?

Take this my child and serve me wellgeranium

Even if it’s just your example

People will know by your actions and faith

That my care is always ample.

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

Locked in this body, that hurts when it moves

These legs with unsteady gait.

Remember my child, Milton wrote long ago–

“They also serve who only stand and wait.”

Acceptance and peace begin anew.P1000934xx

Your heart can sing again.

There is a wonderful life for me now…

It’s how you feel within!


ABOUT  THE  AUTHOR

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

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

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

 

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The Search for Anthology Authors Continues…

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

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

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

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

Thank you!

Sunny

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

 


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


 

From Personal Experience: Give a Holiday Gift That Really Helps

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“Hmmmm…What’s a better gift for my buddies who are living with polio?”

Uh, oh. There are only a few shopping days left until Christmas. Are you a stumped shopper this holiday season?  Do you have no idea what to give that dear friend?

Well, I might have an idea or two for you. As a person with a post-polio disability, I have received many thoughtful gifts from friends and family over the years. They are presents that have helped me be healthier, more functional and better connected to the world around me.

If you have no idea what to get that favorite person this holiday season, there’s still time!  Maybe I can help.

Here are 7 gifts that I have appreciated receiving. Maybe your friend or loved one would benefit from having one too.

415y8r1IK8L._SX42rival1. Crock-Pot

Many years ago, when I first set up housekeeping as a 20-something single woman with a demanding teaching career, my good friend, Rosalie, bought me a crock-pot. Looking back, that was one of the best all-time gifts I ever received. I could put my dinner in to cook before I left for work in the morning and when I got home after a busy day–wa! la!–a tasty one-pot supper was ready for me to enjoy. And the whole house smelled wonderful as savory dinner aromas wafted upon entry. I used to joke that maybe it was the work of an altruistic “crackpot” cook who broke in and did it all when I was away.  Anyhow,  a crock-pot can make cooking so easy for someone with limited time and physical energy. Because my hands don’t chop vegetables as well as they used to, I now ask my grocer to cut up the fresh vegetables I purchase, which he is happy to do at no extra charge. Then I am ready to crock-pot it all up!  By now, crock-pots are common household items, but these days they come in all shapes and sizes. The shops even sell cute little ones to serve up warm cheese dips for holiday entertaining. Crock-pots are about half the price they started out at 40 years ago, too.

Check out:    Crock-Pot SCR400-B 4-Quart Manual Slow Cooker, Black

  2. George Foreman Grill

41-T6zwOwNLgrill

This little table-top grill was another great gift!  It has also been around for many years. I especially like it in the summer when the aroma of steaks grilling is in the air and I want to create a summertime barbecue that is manageable. Besides a nice steak, hamburgers and veggies are also easy and quick! I can grill without having to go outside, pull out the giant cooker, feverishly scrape the grate, and be sure not to get blown up when I light the gas. I am happy Gerorge Foreman came up with his idea.

Maybe your friend would like a red one: George Foreman Champ Grill, Red

 

 3. Philips Sonicare Rechargeable Electric Toothbrush

 

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This was a very smart gift that my sister, Holly, and brother-in-law, Kris,  gave me a couple years ago. They had just been to their dentist and were passing along the recommendation for keeping our aging teeth healthy and happy. It is an excellent appliance. It brushes like no other, it is easy to use for those of us who have limited hand function. Plus, it is great to travel with. It has its own travel case and holds a charge for at least 2 weeks. But what really sold me on it were the cheerful comments my dentist made when I went in for my semi-annual check up. He said that my teeth had really been cleaned up well and there were no dental issues to report. All I had done was use my new toothbrush. It is definitely worth the small investment. This gift will keep everyone smiling. Ho! Ho! Ho!

Here it is: Philips Sonicare HX6731/02 Healthywhite Rechargeable Electric Toothbrush

 4e0370d343671dd427c0373fab1d6afa  massage4. Massage

The gift of an in-home massage is also wonderful. When I was going through a life-altering crisis 11 years ago, a colleague at work said, “I want to help. I am going to buy you a massage.” She gave me a gift certificate to a local massage center. It was such a thoughtful present! I loved it more than I ever thought I would and started the practice of getting a massage whenever possible.  A good massage is great for sore muscles, poor circulation, and stress, which polio survivors experience so much of the time. In fact, right after a massage is my most pain-free time. I was able to find a therapist who could come to my home for an extra $15.00 which made all the difference because changing clothes, taking braces on and off several times can be a real hassle. It’s much more do-able at home. They have portable tables. Contact your local massage center or the American Massage Therapy Association  to buy a gift certificate. You might even see if they have a therapist who is trained in massage for seniors. Some are.

 5. E-Reader

feature-accessories._V325436015_kA couple of years ago my sister and brother-in-law gave me a NOOK for Christmas. It’s an e-reader.

An e-reader, also called an e-book reader or e-book device, is a mobile electronic device that is designed primarily for the purpose of reading digital e-books and periodicals. Any device that can display text on a screen may act as an e-book reader, but specialized e-book reader designs may optimize portability, readability (especially in sunlight), and battery life for this purpose. A single e-book reader is capable of holding the digital equivalent of hundreds of printed texts with no added bulk or measurable mass.

This device is so handy–quite portable around the house and on trips, and I can buy a new book instantly. No trip to the bookstore needed. I especially appreciate the kind of e-reader that has a lit screen for reading outdoors or at night in the dark. Sure, good old paper books are a source of tactile comfort and feel like the real deal. But having a choice of reading instruments is a new pleasure because it’s such a convenience. This device makes life a little easier. The most popular e-readers are NOOKS and KINDLES.

To check out the NOOKS, go to: http://www.barnesandnoble.com/u/nook/379003208  

Search for a Kindle on Amazon at: Kindle Voyage, 6″ High-Resolution Display (300 ppi) with Adaptive Built-in Light, PagePress Sensors, Wi-Fi

 images sm6. Smartphone

A smartphone is a mobile phone with an operating system. Smartphones typically include the features of a phone with those of another popular consumer device, such as a personal digital assistant, a digital camera, a media player, and/or a GPS navigation unit. Later smartphones include all of those plus the features of a touchscreencomputer, including web browsing, Wi-Fi, 3rd-party apps, motion sensor, mobile payment and 3G.”

Just received an iPhone as a gift from “The Merry Meyers,” my long-time ever-loving “extended family.” A few weeks ago, we added me to their “friends and family phone plan.” For the same $40.00/month as my dorky cell phone, I suddenly not only feel more hip-trendy-cool; I am now super-connected at home and when I’m on the go! I am the proud owner of a smartphone. Somebody told me once, “If you want to stay in touch with the kids in your life, you have to text. They respond immediately. They text at lightening speed. Much faster than returning our phone calls.” Texting is much easier on a smartphone.

Oh my gosh!  With my iPhone  I’m suddenly part of that high-energy worldwide subculture that is willing and able to connect anywhere immediately. It’s different and it’s better. Of course it will never take the place of real life, in-person touching, talking get-togethers, but it does come in second. Now I can access the internet, including email, anywhere I go; and can make a phone call on the spot. I can take photos and send them to friends and so much more that I’m still discovering.

Once again, I had no idea I’d love this newfangled convenience so much, but it opens up fresh avenues of connectivity for me. As my friend said, “fighting and criticizing the flourishing new world of electronics is foolish. It won’t stop the change and the progress. Everybody’s on the moving train. So let’s jump on and enjoy the ride with all our friends.”

Look for smartphones all over–at your Apple store, or at Best Buy or on Amazon:Smartphones

Well, those are a few gifts that have helped me through life. But they would all be worthless without the most important one…

7. YOU

all-i-want-for-christmas-mirror-960x1280 mWe all know that the very best presents you could possibly give your friend at this time of year is your physical, emotional, intellectual and spiritual presence.

That’s YOU–up-close and personal.

Give Generously!


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Do you have any ideas for great gifts that others may enjoy receiving next week?

Please share them here, quickly.  Before Santa flies.

Ho! Ho! Ho!