A Declaration of Interdependence

“Need help with that ladder, Grandma? No? Splat! OMG! Grandma fell from the ladder! She’s grimacing in pain and can’t get up! Call the ambulance! There goes Grandma off to the hospital. Sigh. I wish Grandma knew that asking for help isn’t a cop out. It takes courage at first, but after that, it would make life a lot easier for all of us.”

It seems that many people who are living into later life resist asking others for help in the name of independence and “not wanting to burden anyone.” But what might life really teach us about managing its never-ending onslaught of challenges? Maybe sharing my experience will be useful. As a polio survivor for 67 years who has used crutches, leg braces, and now an electric scooter to get around, I was taught searing lessons early on about the difference between dependence and independence.

Dependence was a bad word. It conjured up images of being shut away in a medical institution or in a back bedroom somewhere, sick and infantile, totally reliant on others. I was also taught as a child not to be a burden on others and was chastised when I was moving in that direction. Now I wonder about that. A burden? What does that mean? I guess it means being emotionally and physically needy, being a taker, childishly weak, unable or unwilling to participate in reciprocal relationships with those around us. When we are too dependent, do we become a thorn in the side of those near us, an affliction imposed upon others?

Independence, on the other hand, was a good word. A very good word. As children of the polio epidemics of the 1950s, we were indoctrinated with the goal of becoming fiercely independent as we went through our initial rehabilitation from acute polio.  “Do it yourself! You fell? 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 messages I often heard from my parents and therapists. And those lessons worked well for me for a long time.

Now, as a mature adult who continues to live with a physical disability, I contemplate: could it be that dependence versus independence are two unreasonable extremes? Too much dependence can lead to dysfunction and low self-esteem. Conversely, too much independence can lead to burnout– always giving, always super-achieving.  

What, then, is the most sensible way to manage our daily lives now? Our greatest American document, other than the Constitution, is our 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: our own Declaration of Interdependence!  Not wilting dependence. Not blazing independence. But interdependence.

Interdependence. It’s “the quality of being mutually reliant on each other.” 

Trying to be that timeworn kind of independent doesn’t work as we grow into our later life years. Trying to do everything without help is not only isolating; it can be dangerous.  Climbing a ladder to hang curtains? A broken hip is no fun.

Traipsing in the snow and ice to my roadside mailbox instead of arranging for front door mail delivery with the post office? Let’s think outside the box (or in this case, the mailbox) about that issue! Asking for convenient mail delivery wouldn’t be viewed as a cop out by anyone. It’s a smart thing to do. For me, front door delivery has become an opportunity to share a smile and good words with my mail carrier. And I know by her friendly tidings that she appreciates our positive rapport. Our new arrangement may also have spared her the horror of finding me stranded and struggling in a snowbank trying to retrieve my mail the old way.

These days painting the fence or planting a garden could easily result in a fall, and then a popped bicep when trying to push up from the ground. My Declaration of Interdependence advises me to find a few twenty-year-old’s who love outdoor work. Then give them some of my best home baked cookies, some money and my full attention as they do the work, share their interests and tell me all about their life plans. This way, everyone gains from the experience.

At first it might feel humiliating or distasteful to ask for new assistance, but it can be done. In fact, in my own medical situation, I discovered the hard way that it must be done. When I unexpectedly faced new debilitating pain, weakness and fatigue, known as polio’s late effects, I had to ditch my uninformed ways of managing medical and lifestyle challenges. Now I pace myself and metaphorically, “take the elevator instead of the stairs.” I also make sure to tap into the advice of physical and occupational therapists regularly.

Since the early 1980s, polio survivors numbering in the hundreds of thousands around the world have, in the spirit of interdependence, created and participated in our networking organization, Post-Polio Health International (PHI).  Through PHI, post-polio medical professionals and survivors have learned from each other about the late effects of polio. They have become healthcare-interdependent. Banding together, they have supported cutting-edge medical research, built an extensive library of scientific and historical information (https://www.polioplace.org/) and continue to advocate for resources. It’s powerful to witness medical professionals and their patients become each other’s experts as they come together in conferencing, publishing newsletters, and linking up on a variety of web-based platforms.

Interdependence. It’s “the quality of being mutually reliant on each other.”  Under the guidance of this new Declaration, my neighborhood buddies and I now have added opportunity to enjoy each other’s company because we are more open about expressing our changing needs.  As we talk, we agree to show up for each other in new ways. In the process, we have identified one key to success.  I make sure that what I ask others to help with is something they genuinely like to do. Some enjoy running errands. Others treasure their cooking skills. Still others love to help with craft or sewing projects. And they, in turn, know what I would do best for them. Drawing upon our specific talents almost always guarantees that our exchange will be mutually rewarding. 

My Declaration of Interdependence also extends to willing strangers whom I encounter in public places. Often, I ask unsuspecting shoppers at the grocery store for assistance in reaching items on high shelves.  My reciprocal gift to them can be sizeable or simple. A warm hearted thank you and recognition that their kind assistance is truly valued may be the only boost they have had all day.

Adopting a renewed level of mutual exchange makes sense because we have always needed others and they have needed us. Surprisingly, I have found that life can be even more deeply gratifying as I risk receiving and giving in unexpected new ways.

Living out my new Declaration of Interdependence has been different.

It’s also been delightful.

Thanks for reading,

Sunny

This article was previously published in Post-Polio Health, Summer 2019, Volume 38, Number 3.


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Re-Inventing Christmas

This year, December ushered in a dim and bewildering Christmas season for me. My family members all had important new personal plans that barred me from celebrating Christmas day with any of them. No family at Christmas. They’d been there through life with me so often, so supportive.  But this Christmas I wavered, forsaken. For the first time in my 70 years, I had not even been invited. Of course, I sincerely understand and accept that my west coast sister and her husband have every right to take a well-earned trip and my gulf coast brother and his wife needed to be present at the birth of their first grandchild. Of course. They have their needs too. It’s not all about me. Absolutely.

But, being a never-married single woman, having no family within 2000 miles, I was suddenly orphaned in the frigid, snowy Midwest. I felt trashed. The  message rang out like a perverse Christmas carol: “You’re on your own again…fa la la.  You’re independent…la la la. You’ll figure it out…ho ho ho.”

As I sat in church waiting for the early December Advent service to begin, I realized that this had become a Confusing Christmas. There was a big gaping chasm in my life that used to be experienced as Christmas with Family. Disoriented, I had been left wondering how to re-invent my own Christmas celebration at home.  I especially did not want to be left out–isolated and feeling forlorn on Christmas day. That would have been awful.

So, with the coaching of good friends, I decided to re-invent the Christmas celebration I had always known. Looking back, we came up with a three-step process that I want to share with you in case you ever need to re-do your Christmas celebration. Here it is:

  1. Be proactive. Tell everyone you know and like about your new Christmas quandary.

  2. Immediately make plans to actively celebrate in old and new ways that include spreading the Christmas spirit by giving to others.

  3. Wait and watch for a few Christmas miracles to happen.

Here’s how a new Christmas unfolded for me…

Step 1:

I began letting all my friends know that I would be in town for Christmas and that I’d love to get together. Many of them shared with me the joys and benefits of being surrounded by their large families of choice–close friends who are there to function as family when needed. They are the dear friends we choose to be members of our inner circle. My close friends and I all agree that “it takes a village” to support and love us in this life; and my buddies reached out. They turned themselves into my first ever, living “Christmas village!”

Step 2

Christmas plans emerged. I wrote and sent more Christmas cards than I ever had in the past. We made flower arrangements for 22 friends and, donned with Santa hats, delivered them all over town. We attended Christmas concerts, a dinner, 2 luncheons.

We also baked dozens of Christmas cookies and secretly left 4 dozen of them out for the young construction workers who, from dawn to dusk, were re-roofing our snow-laden high-peaked building in freezing December temperatures. They found the baked delights on the open tailgate of their pickup truck with a Christmas card thanking them for their hard work.

My friends and I shared lots of stop-by visits at my place to exchange gifts, converse over dinner and catch up. What a joy! While visiting, several of my “Christmas companions” confided that by necessity, they, too, were in the process of re-inventing their personal holiday celebration.

Sarah came over one day with gifts. We ordered pizza and watched Christmas in Connecticut. During the afternoon she confided that she too is struggling with how to re-invent her Christmas traditions. Her kids were gone for the first time this year. She is officially an empty-nester. As she begins to redesign her future Christmases, she has decided to minister to people around her who are the most downtrodden and marginalized in our society–the homeless, mentally lost, and ill. She has a special heart for people with serious disabilities.

Another super-close friend, Lily, came overnight for a gift exchange, dinner, and a movie. We watched It’s a Wonderful Life. She has confided that she and her husband had suffered and struggled with the thought of having no big bustling family celebration at their home on Christmas day, with lots of food, chatter, and gift-giving. Their kids announced that they would be over to celebrate on December 23rd, not the 25th. They both felt discounted by thoughtless adult children who made plans without their input. Now, how could Christmas day be anything but bleak? But wait! On Christmas morning she wrote, “Merry CHRISTmas! What a beautiful morning with the new snowfall. Relaxing, quiet day. So nice to be done with everything and just enjoy the day. Wow! Another new experience! Another new experience for both of us. And isn’t life just full of them? Blessings to fill up the holes/spaces where something else has left our lives, and literally made room for new and wonderful experiences to wander in. Another grace-filled gift… Now how is that for a fun and comforting way to look at those future changes–challenges that we know will come?”

Step 3

During the course of planning for a new Christmas celebration away from family, several friends apologized that they would have me over on Christmas day, but they couldn’t. There would be no way to get me into their homes since I use a wheelchair full time and they have many steps. I knew ahead of time that that would be true with so many. Limited options. Barriers. Barriers to friendship. Barriers to fellowship. Barriers to sharing Christmas together. I would be left out. No room at their Inns, I guess.

But then! A completely unexpected Christmas miracle happened! A fellow, who is my handyman, stopped by one early morning to bring us some baking supplies. As he sipped a cup of Christmas coffee we had gratefully offered him, he cheerfully invited me and a friend over to share Christmas Day dinner with him and his significant other. Totally unexpected since we had never done anything so social before, I was thrilled! No dark, cold, lonely Christmas Day without family? Wow! What a Christmas surprise!

His face suddenly changed from smiley to somber as he began mulling over some new thought. Hesitating, he confessed that he wasn’t sure I could get into his house because he only had stairs at his front door.

Oh no! Shut out again in spite of good intentions. Heavy sigh. What a burden.

He left that morning wondering. Should he have extended the invitation at all?

A few long days passed. Then he sent me a text. When I opened it, I realized that I had just received the best Christmas card anyone could have possibly sent…

 

 

 

He had built a ramp!

I was still welcome and wanted! 

That was all I ever needed to know.

And oh, we had a wonderful Christmas day together…turkey with all the trimmings, a 9-foot Douglas Fir tree sparkling with colorful ornaments, Christmas carols softly wafting through the rooms, candles glowing, Christmas stories read aloud to each other, gifts exchanged, a rollicking game of Christmas trivia. Seen through huge picture windows, a lacy panorama of fresh white snow on woodland branches provided the perfect backdrop for such a gathering of peaceful hearts brimming with good cheer.

What a wonderful Christmas Re-Invented!

And, as I look back, out of  this Christmas re-invented came a new invention. It’s that process for navigating unexpected change and loss in life which offers help and a hope for renewed happiness.  All I need to do is remember it.

“God bless us, everyone!”

 

Thanks for reading

and Happy New Year to You and Yours,

Sunny

 

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.

—————————————————-

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.

michigan2

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

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

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

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

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

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

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

 

 

Thanks for Reading,

Sunny

 

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

 

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

 

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

Click on this link: NuStep for polio survivors

 

 

 

 

 

 

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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.”

lemieux vv

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…


 

Way Back When: The Lost Anthology–Chapter Three

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

 

The Best Wheels

There were once two little girls

who loved to play with wheels.

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“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!

___________________________________

People

Most people stand up straight and tall,

can walk and run with no help at all.

But some use canes or crutches, too,

to walk around like others do.

Some need braces or special shoes

for walking or running or whatever they choose.

And some people can just sit in a chair

And wheel around from here to there.

But remember that we’re all people, too,

We all like to play and go to the zoo.

We all love to laugh and sing and talk

whether we have to wheel or walk.

Brian Penguins 2vv

“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 …

Polio Survivors–Movement

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

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

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

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

paintings trees childhood children_www.wall321.com_8 bb

Unknown Artist

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

______________________________________________

About the Author

10982084_10204913127121900_4667068791303788880_naaMary Ellen Nyberg Hemby lives in Willis, Texas. She contracted polio in 1954 at age two in Nebraska and walked with one long leg brace during her younger years. After college graduation, she moved to Texas to escape winter weather. Mary Ellen worked as a Montessori teacher for five  years.  Post-Polio Syndrome was diagnosed in 1986 when she was married with two young daughters.

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

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

Thank you, Mary Ellen.

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

 


Still Searching…

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

 

Are you somewhere out there?

Lets-Go-Fly-a-Kite-kids-or-adults vv

 


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Are You Listening?

“One of the most sincere forms of respect is actually                     listening to what another has to say.”                                    — Bryant H. McGill

I’d like to take this opportunity to sincerely thank all of the people inThanks rose our lives who give us the absolutely priceless gift of respectfully and deeply listening to us.

They draw near, take the time and look us straight in the eye. They take turns. They give us 50% of the conversation. They are the people who ask questions like “how are you, really?” and actually wait for the answer. Then they give us their full attention and refuse to be distracted by interfering interruptions. They also refrain from becoming interruptive conversation cloggers, themselves.

How do we feel when someone is listening intently?

It is such a good good feeling when people pay attention to what we are saying to them. It tells us that we matter. We are understood.  When effective listening happens, we can sense that all of us are interconnected and influential. When a person listens to us, we are reminded that we too have a valid place in the world. What we think, feel and say is to be considered, deliberated and responded to. When that happens we don’t shut down. We break out of solitary confinement. Then we are better able to share our gifts and talents with the rest of the world.

How do we feel when the person we are with does not listen to what we are saying?

Insignificant. Irrelevant. Empty. Not to mention, invisible. And it seems that being surrounded by non-listeners is more common than not. It is what I have come to expect at least 80% of the time.

Not listening cuts us off from the person we are with. As non-listeners we miss out on the gifts that others offer us. In fact, everybody loses. The speaker loses a sense of validation and the non-listener loses the opportunity to choose a deeper, more intimate relationship.

We have all experienced that non-listener who seems to fall into one of the following two categories…

First, there are the people who pounce on us and insist we respond to their self-df16791ec87ca0d68d4888f134fa49e9sncentered agenda. They dominate the conversation and ceaselessly talk 90% of our time together–seems either desperate or narcissistic. It gets to the point where we are scared to even ask, “how are you?” That will start their long monologue that ends with them cutting us off saying, “Well, it was great talking to you,” rather than WITH you!  Then, “ta-ta!” they abruptly disappear, leaving us in a heap. As hard as they may try to appear considerate, what they say often comes across as “Enough about me…now…what do YOU think of me?”

Second, there is the non-listener who, when we are about to share an important thought or feeling, drifts off after the first 20 seconds. They have no intent to listen and their lack of interest in what we have to say makes us feel devalued. Being neglected in this way can actually feel like a subtle form of abuse.

Listening is caring.

“Listening is such a simple act.  It requires us to be present, and that takes practice, but we don’t have to do anything else.  We don’t have to advise, or coach, or sound wise.  We just have to be willing to sit there and listen.”

                                                                         ~ Margaret J. Wheatley

Well actually, there’s a little more.  If we want to improve our relationships and become better listeners (and closer friends), it does involve consciously practicing a few important skills:

  • First, we have to want to become a better listener. It requires that we have the desire, commitment and patience it takes to enter into the other person’s world of thought and feeling with openhearted acceptance. There is no room for critical condemnation at the time a person is sharing deeply personal feelings.
  • It also requires deliberate focus on the other person. In the dynamic of you vs. them, this is about them. I try to focus completely without being distracted– especially by any technology we are carrying, like smart phones. Rather than spending time mentally formulating a response to what they are saying, instead it’s important to concentrate fully on what the other person is trying to fully express.
  • I think in a friendship role, good listening should be a 50-50 bargain. I listen during half the conversation, and my friend listens to me during the other half.  Seems fair to me, unless my friend is going through something really heavy and needs to talk more than usual.
  • As a listener, I need to listen to my friend’s words and pick up on their body language at the same time.
  • I need to nod in affirmation of a point my friend is making.
  • I can reflect my friend’s thought back, re-phrasing it, showing them I got it.
  • I also want to ask pertinent questions for clarification.

Having good listeners in our life can be an invaluable gift. And with a little intent, focus and practice we can not only strengthen our relationships, but offer that gift of listener-love to so many people.

 

listening

–My sincere thanks to this article’s co-authors, Linda Wheeler Donahue, Rosalie Meyer and Susan Rasmussen.–


Any comments?  Ever felt invisible?

Ever wanted to talk about living with polio, but were afraid of being tuned out?

You matter.

We’re listening very closely, waiting for your thoughts…


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If It’s Tough to Get Out: Become A Holiday Destination Yourself!

 

The holidays are about…

glow

 

“Love for one another.

Forgiveness.

Generosity.

Time.

Music.

Children’s laughter. 

Reminiscing with loved ones.

Remembering those who are alone.

The making of new memories.”  

–Toni Sorenson

 

Rpoison berriesecently, I had what seemed like an interminable breakfast with a melacholic woman who had had polio as a child. As we crunched together on our toast, she moaned and groaned, bewailing the fact that she was so afraid of being lonely in her old age. As I listened and sipped on my orange juice, her grief and fear became mine for a moment. I felt her pain. I worried. It had become financially and physically tough for her to travel anymore. Her adult children never came to visit. Her brother and sister were wrapped up in their own families. She didn’t see her friends very often. Actually, by the time our final cups of coffee were poured, this early morning encounter had become a lop-sided monologue of misery that might have completely exhausted other listeners. If complaining was her modus operandi, I impatiently wondered if her gloominess might be keeping people away.

Maybe not, but I felt heartsick for her. When we each finally paid our tabs, I was more than ready to escape her dour trap of torment and get “the heck” out of there.

But this emotionally toxic breakfast meeting got me thinking.

Something needed to be done! I wanted to help because I am sure that feeling forgotten and forsaken doesn’t have to be true for her–or anyone really– especially at this time of year.

NOBODY needs to be alone during the holidays…

chuy christmas

So, I thought, if she can’t go see the people she loves, then how could she make her home a happy place for friends and family to visit?  How could she attract people to her space?

Assuming her friends would include those who were disabled as well as those who were non-disabled, here are some ideas for first, short visits; and second, longer holiday sleep-overs.

 

11 Tips for Hosting

Short Holiday Visits

Perhaps our friend would like to have someone over one afternoon or evening for a festive holiday visit. Here are 11 pointers she could take into consideration:

1. Be sure the house is clean. If needed, pet odors must be eliminated.

2. Have  a few holiday amenities in the house such as a festive flower arrangement or a holiday candle to light. Use scented candles, room sprays, or diffusers in seasonal scents to give off a warm, holiday-ready feel.

3. Have light refreshments ready. Coffee, tea, and simple holiday pastries can be inexpensive and easy to serve.

4. If  her guests include babies or small children, she should be sure to store away any potentially harmful objects or decor in her home, and do any necessary childproofing of furniture before the visit.

5. When friends and family arrive at her home, warmhearted welcomes set the tone for a delightful visit . She needs to ready-up to share hugs hanukah-candles4 usand smiles generously. More than that, it’s essential that she keep conversations as positive as possible. This is not the time for complaining, sarcasm, whining or  criticizing. People need to be affirmed and strengthened.

6. She needs to remember that this holiday visit is mostly about the joy of relationships. It helps to be a great listener. (Wouldn’t it be so nurturing and warmhearted if she and her guest had somehow previously agreed to a 50-50 listening policy—she listens half the time to them and they listen half the time to her? Now that’s a reciprocal relationship! )

7. Make sure her guests leave on a sweet note by sending them home with some dessert leftovers or other pack-able souvenir that is reminiscent of their time together.

?????????????????????????????????????????????????????????????????The following additional suggestions are offered by Linda Wheeler Donahue, polio survivor and good-hearted hostess from Southbury, Connecticut.   Linda writes:

I love to surround myself with friends and family at the holidays.  However, I cannot travel to see them, so I had to think of ways to draw them to me, instead.  Here are some tips that work for me. 

8. I plan a theme night to make it fun right from the start. One year, the theme was red.  I asked friends and family to dress in red.  What fun when everyone came through the door in their crimson attire. And after all, the holidays are often expressed in the color red.  I made certain invitees knew that I did not expect them to go to any major expense.  If they did not have much red in their closet, even just a red scarf would do.  You would be surprised at the smiles when friends arrived.  How unifying it is to all wear the same color, it says, “We’re all in the Red Club.”  Our group photo was very dramatic and festive!

linda in black

Linda Wheeler Donahue

9. The notion of producing a huge turkey dinner with all the trimmings is no longer possible for me. Therefore, to make the gathering work for my increasing post polio disability, I invite friends to come on a date near to the major holiday but not precisely on the holiday.  For example, I avoid Thanksgiving Day and invite friends for the Saturday after Thanksgiving.  I avoid Christmas and have my gathering on Boxing Day.  Rather than do a New Year’s Eve party, I invite friends for New Year’s Day when all the pressure is off.

10. Intimidated by trying to replicate the idyllic holidays I grew up with, it finally occurred to me that I could start my own traditions. I decided to embrace “polio friendly” entertaining.  It all starts with an e-vite in which I suggest 3 potential dates for the get-together.  Folks talk openly about which of three suggested dates works for them and they can see who else is being invited.  I prepare the main course, such as a roast turkey, baked ham, or prime rib of beef.  I ask the guests to bring a side dish to go along with the roast.

11. Rather than a traditional feast, I have given myself permission to do far less work than produce a sit-down meal. Instead, I create a buffet table of foods that contains nostalgic aromas and holiday flavors of the season.  Since spices take center stage during the holidays, I prepare dishes with their bold flavors and hot-sweet nuances.  I like to do a hassle-free buffet menu that features recipes that can be made ahead of time and served at room temperature, leaving me time to enjoy my guests.  From dips to desserts, my goal is to offer a wide selection of foods to choose from so that each guest leaves with a smile and a full tummy.  I ask a few close family members to come the day before and help out with the preparations.

So, while I am unable to enter the homes of my friends and family, I have come up with some welcoming ways to encourage them to come to me instead. 

 

7 Tips for Hosting Visitors Who Will Be 

Staying Several Nights

Our friend may want to invite friends or family to stay at her home for an extended holiday visit. Here are some ideas for her to consider:

Wanna Play 11. She could clear out some space in her home’s entryway. Depending on the climate where she lives, her guests may have bulky coats, boots, and other cold-weather accessories. To keep that stuff neatly out of the way during their stay, she should arrange for plenty of extra room by the front door and in her coat closet beforehand.

2. If her guests have a disability, she could:

  • Make sure her house has flat entrances, appropriate adaptive aids ready for guests with disabilities such as bath benches, raised toilet seats, hand held shower heads.
  • Set up cupboards, tables, lamps, etc. so they have appropriate “reach-ability” for all she and her guests need to touch and access.
  • Provide generous circulation areas–for example, can wheelchairs turn full circle in important spaces like kitchens and bathrooms?
  • Monitor if her home ergonomics are appropriate–can a guest actually sit comfortably in either that hard wooden chair or on that huge overstuffed couch?
  • Consider her home electronics–is there a remote control for the TV that is guest-handy? Are there convenient outlets, perhaps power strips, for phone chargers? Can electric scooters be parked and charged easily?

3. Before guests arrive, make up their beds with a fresh set of sheets and set out towels and washcloths for each guest. Write a personalized, heartfelt, handwritten note thanking them for making the trip and place it on their bed. It doesn’t cost much, but it’ll generate a ton of good will.  Have an assortment of personal items at the ready in the guest room– everyday toiletries such as toothbrushes and toothpaste, tissues, lotion, and fresh soaps are a given, but extra touches like a pair of cozy cashmere socks to snuggle in and a good book are thoughtful and appreciated.

4. Make guests feel at home by stocking a cabinet with snacks and pantry staples for whenever the munchies strike. Also, have things like fruit and veggies on hand, and simply show guests where they’re all located when they arrive so they can feel free to dig in.

5. To help bond and bring out the holiday spirit at home, plan an activity family and guests can do together — and santainvolve the kids too. Whether they decorate cookies or wrap gifts as a group, everyone will feel a sense of togetherness that will diffuse any tension or stress from the craziness of the season. Ask them in advance what they would most like to do during their visit. Then try to do it. They deserve to feel well-loved and special during the time she is hosting them.

6. Be a person who gives guests a chance to comfortably relax and contribute. Ask them their preferences for things to do and places to go throughout the visit. On the flip side, know that guests don’t want to wear their host out. Our friend can let them know what she needs, such as when she requires a break; whether it’s a walk, a nap, an early bedtime, or a solo trip to the store. Her guests don’t expect her to be their slave, so she can enlist their help to clear dishes, prepare food, and set the table. Getting everyone involved evokes togetherness and holiday spirit, and prevents all from going crazy. Delegate!

7. Finally, the biggest thing for her to remember is that her friends/parents/in-laws are, with the occasional exception, there to enjoy her company, not to judge her or her home’s resemblance to a Better Homes and Gardens holiday feature.  She should take a deep breath, trust that her guests are grown-up enough to find their way around, and stop fluffing pillows and clearing dishes long enough to let herself genuinely enjoy their time together.

It will be over all too soon. At least, until next time.

We can only hope that the softhearted spirit of the holiday season echos in her guests’ minds and hearts well after they are gone.  And that their departing words reverberate and bless her all year long: “there MUST be a next time!”

________________________________________________________________________

Have yourself a merry little EVERYTHING!

 

˜˜Many thanks to this article’s contributors:  Linda Wheeler Donahue, Frank Frisina, Martha Stewart.com, Rosalie Meyer and Susan Rasmussen˜˜
 
 

______________________________________________________________________

How do you celebrate the holidays with your family and friends?

Any additional suggestions for our forlorn breakfast companion?

Any insights you’d like to share about successfully enjoying the holidays as you are also living with polio?

Eve's santa

Close-up of an applique quilt square made for me one Christmas by my super-friend, Eva Harris.

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Loneliness Is A Choice

 Happy Halloween!

spooks!Oh dear… a rather spoooooky group… but at least they found each other!

This newest post is from my wise friend, Joyce Tepley.

If you have ever feared loneliness or know someone who seems way too lonesome, you must read it.

Joyce shines a very bright light on this issue.

Sunny

_______________

The last time I felt lonely was in college about 50 years ago. I was lonely for a boyfriend. I didn’t have one. So it is hard for me to relate to someone who says he or she is lonely.

I can understand and appreciate being lonely after someone you are particularly close to dies, like your spouse or best friend. You ache for those precious moments of heart-felt sharing that you will not have anymore. Those playful times that are inside jokes that only you and she knew about. There is only one thing to do, and that is grieve for a while.

That’s not the lonely I am writing about here. I am referring to the loneliness that comes from rejection. Not you being rejected, but by you not taking responsibility for rejecting the myriad opportunities for connection.

I was listening to a recorded question and answer session of a psychiatrist named David Hawkins . He wrote several books about human values and how we are all connected or one with the universe. Sounds esoteric but he was quite practical in his approach to living a life of integrity. Someone in the audience was brave enough to self-disclose that he could not FEEL love from others who said they loved him. Dr. Hawkins, without skipping a beat said, “So you REJECT love.” In those few words he turned it back to the man to consider taking full responsibility for CHOOSING his emotional position in life. Our feelings don’t just happen to us, we choose them. Loneliness is a choice.

Maybe you are shy and that’s your excuse for not meeting new people or cultivating, like a garden, your existing friends and family. Get over it! Gregariousness is a skill that can be learned. I was extremely shy in high school because I felt so different in my polio-ravaged body with my crooked hunch back. My classmates were kind, didn’t seem to notice that I was no different from them, and they included me in everything they did. I was fortunate not to be teased and bullied. But I also made an effort to fit in and get over my shyness. I devoured Dale Carnegie’s book, How To Win Friends and Influence People. It worked for me. I practiced what he suggested like asking people questions about themselves and starting conversations. Most people are willing to talk about themselves given half a chance. He said, LISTEN. reallyLISTEN. LISTEN. It’s an art.

After summoning the courage to ask questions of strangers I happened to be sitting next to just for practice sake, then listening to their responses, I soon got more comfortable and it actually became fun. I met some fascinating people.

Douglas LaBier, Ph.D., is director of the Center for Progressive Development and recently wrote an article on the Huffington Post called “How Positive Relationships Help You Grow and Thrive.” He reported on a study done at Carnegie Melon and UC Santa Barbara that concluded how necessary positive human connection is for our emotional and physical health. The study was about the kind of support that makes one feel understood, validated and cared for, not weak, needy and restricting of one’s self-determination. Positive support from others, not only encourages our resilience during a crisis, but helps us grow to a greater level of well-being. The article ended with, “…. accepting support when needed, and being willing and able to provide support in return, helps cultivate the types of mutually caring relationships that enable people to thrive.”

Every single one of the people I interviewed for my research on what it takes to thrive through difficult times said they couldn’t make it without the support from family, friends, paid helpers, acquaintances, people they knew through organizations they belonged to, medical personnel, people on the street who offered help, store workers they came in contact with on a regular basis, and even their pets. The list of support people goes on and on for a thriver. But then, they also told me how much they give of their time and talents to others. No matter if they had paid employment or not, all the thrivers I interviewed volunteered for other organizations. I need to sparkymention that these thrivers all had severe and long-term physical disabilities. You can read their stories and what they attribute their abilities to thrive to in my book Thriving Through It-How They Do It: What It Takes to Transform Trauma Into Triumph. Sunny has been kind enough to review it and let me write this piece on her site.

If I seem harsh or unsympathetic, please forgive me. It upsets me to see or hear of people closing themselves off from the banquet that is out there, the beauty of connection, and the nourishment of being with others who uplift us. I treasure and count on my solitude to recharge me but I gain strength from those I can laugh and cry with.

Don’t limit yourself. If you are depressed, get help. True clinical depression does alter our brain and body chemistry and short term use of medications can be of great benefit in ‘jump starting’ our brains to feel better. If you are afraid, push yourself to take one baby step at a time, like first monitoring your self-talk. If you hear in your head words like ‘I can’t,’ ‘who cares,’ ‘I don’t know where to start,’ change those words to ‘Yes, I can. I just need to learn how.’ ‘I care. And I don’t live in anyone else’s brain or body to know if they care or not.’ ‘I’ll start by smiling more, reading inspiring stories, stop complaining, stop watching bad news that I can’t do anything about, learn to be the kind of person I enjoy being around. I’ll start a conversation in line at the grocery store. I won’t make a big deal out of it. I’ll just do it.’  Nowadays we don’t even have to leave the comfort of our own homes to meet people and have meaningful conversations or just chit-chat. Sometimes these cyber relationships become more. One of my best friends, who also had polio, met her husband online. They’ve been happily married over 10 years now, believe it or not.

I could go on and on and I haven’t even covered social media sources. We’ll save that for the next time. I just heard about these Meet Up groups online that are loosely organized networking groups around topics of mutual interest, like knitting, the small house movement, tea, cooking. You name it, there is one. Check them out. Google ‘Meet Up Groups.’ You do know how to Google, don’t you?

Joyce Ann Tepley

Author of…

Click on this picture to find it.

 

info@thriverlivingcommunity.com

www.thriverlivingcommunity.com
www.thrivingthroughit.wordpress.com

_____________________________________________________________________

P.S. If you’ve never read How to Win Friends and Influence People, there is no time like the present!  It’s a MUST for people who need people.

–Sunny

Read Dale Carnegie’s classic book. Click here!

_______________________________________________

It would be great to hear from you about this topic.  Does having a post-polio disability set you apart from others?

Do you think loneliness could actually be a choice?

Let’s chat.

You first…

friendly roses

“Walk ‘n Roll!”

grafitti and us

“Creative play is like a spring that bubbles up from deep within a child.” ~Joan Almon

When I first got a three-wheel electric scooter (an Amigo) for long distances 28 years ago, it made me really nervous. I was used to walking. What would people think? Then I called several friends and asked them how having a friend on a scooter would be for them.  They said stuff like, “Hey, we can go more places; we can move faster: and you’re still sexy!” Then we started to test it out and go places. When we saw a buddy’s mom at the art museum, I was self-conscious. She was simply happy to see me. When we went Christmas shopping at the mall, I realized that I could have made big bucks selling rides on my scooter to enthralled kids whose eyes suddenly lit up, faces beamed, and fingers pointed when I zoomed by! Some children even delightedly ran after me with their embarrassed parents charging behind, swept into the vacuum of their kid’s sudden crazy surge of energy! (Oh, if I had only worn a Santa hat!)

I have learned that an electric scooter has a social image akin to that of a golf cart. It’s positive and related to having fun. It’s part of living with polio. People don’t feel sad when they see a scooter. They feel curious and playful. They want it to go fast. They smile at me more quickly. Now when I go out, I depend on my scooter full time. Actually, it would make me more nervous NOT to have one, because I not only critically need it to fully function, I go everywhere in it. It’s an essential part of my freedom as a disabled, but quite healthy person. (Actually it keeps me very healthy, but that’s another post!)

As my perspective has changed over the years, one thought that I now have about scooter-benefits is that having a scooter can help bring back the joys of childhood. Even more important– those joys can be shared with the special kids in our lives. It’s easy to play on a scooter. Kids understand and can immediately relate to scooters. And if, by chance or by design, you can have one ready for each of you –often Ebay sells used ones at very low prices– that’s even better. As Ward Cleaver said years ago,”You’re never too old to do goofy stuff!”

scooter collage

“Kids love watching adults act like children. It’s that spirit they can relate to.” –James Roday

I have been lucky enough to have two great young people in my life during the last decade. They are the children of an old friend. We have been so many places together with me on a scooter. We “walk ‘n roll” side by side. We’ve spent summer days romping at Cedar Point Amusement Park, gazing at downtown Ann Arbor’s street art, sightseeing on the shores of Lake Michigan, and being water-sprayed at the base of Niagara Falls. Back at my house, we’ve pulled out my old spare scooter and two of us on scooters have raced around the condo development, chased each other a quarter of a mile up to the corner for ice cream, or lightheartedly blown soap bubbles at each other then whooshed the elusive orbs high into the March winds. We frolic!  And that is a wonderful way for our hearts and spirits to sparkle and soar.

Kids are so good for adults. They help us stay young.  And in turn, we are good for them. Youngsters these days are “absolutely starved for positive adult contact.”  Remember how that felt?  Didn’t you just adore the adults in your life who were positive and who sincerely wanted to be with you, play with you and listen to you? Electric scooters can serve as one great tool for connecting with and loving the kids in our lives. And as we break with our mundane adult routines, stop, shift gears, then enter into our favorite kids’ worlds, something happens to us. We have the opportunity to renew and be permeated by the power of our own joy, creativity, and enthusiasm.

 DSC02346

Do you have a story about how a scooter has helped you enjoy the kids in your life?

Want to share it?

Would love to hear from you.

Choose to comment below…

Amigo

My favorite scooter company