“Who Are These Polio Survivors?”

The latest installment of…

Way Back When: The Lost Anthology — Chapter Four

The following piece was sent to us by the late Ernie Anderegg from Tuscon, Arizona. He wanted it to be published in the post-polio anthology back in the late 1980s.  This poem is a tough one to read because it so concretely describes the anguish and adversity that polio brought to so many newly-paralyzed children and their heartbroken families. The experience was absolutely devastating on so many levels and can bring back mournful images and memories that are still buried deep within.

But wait! Out of the desolation, Ernie expresses his pride in being a polio survivor and reminds us that the powerful spirit of love and our enthusiasm for living life prevails …


DSCN0591qq

 

Who are these polio Survivors?

 

Infants, only days or weeks into this precious life;

Lifeless and aching in paralytic strife.

Toddlers, removed from their bonding with kin;

to a world of strangers and loneliness therein.

School-age tots, healthy, vital and well;

with an untimely sentencing to a strange form of Hell.

Young adults, men and women alike;

not quite able to evade this phantom’s strike.

With febrile delusion and limbs that would fail;

Like rag dolls–languid, flaccid and frail.

Parents of whom were often alerted,

bunson11

“Go home to your family, death cannot be averted.”

But we heard not the dirge, we made no departure;

and we all cheated death to pursue life’s adventure. ask

Now challenged by life to rebuild and maintain;

the Polio Survivor will gain and regain.

With lost weeks and years in sterile abandonment,

maturing, enduring this foreign environment.

Spanning the spectrum from newborn past twenty;

Their good lives disrupted–tears shed aplenty.

With racking pain in uphill progression,

who’d ever believe we would relive regression?

But through this all we bore the test;

and still proclaim we are the best.

And drawing from our days on trial,

When we all pushed the extra mile.

The common thread running through our lives

was…

The Polio Survivor endures and survives!

plain baycliff flowers v


About the Author

images (3)11Polio survivor, Ernest J. Anderegg, Jr., age 68, “ended his earthly journey at home on March 29, 2015. Born on December 1, 1946 in Jersey City, NJ to parents Ernest and Lillian Anderegg and survived by first wife, Beverly Anderegg; two children, Darrin and Renee; three grandchildren and two brothers, Warren and Gregory Anderegg. As a polio survivor he became a strong advocate for the disabled community and instrumental in establishing the polio EPIC group. His presence will be missed and treasured by family and many beloved friends. He was admired for his wit, appreciation of the value and comfort of friendship, and particularly for his strength and equanimity in the face of chronic pain. He was a profound poet and writer who earned the title of “Distinguished Poet” on Poetry.com.

Of his life he wrote, ” (I am a) polio survivor of the 40’s epidemic (spino-bulbar) who has spent a lifetime ‘trying to pass for normal’ (a term used by survivors).  In my old age there has been a number of concessions, physical and psychological, that directed me to writing to express and vent. Watching the natural course of things in an analytical way,  I am able to draw from life experience to leave my thoughts, strengths, personal spirituality for family & friends to cipher after the fact.”

Ernie was a founding member of the flourishing post-polio support group, Polio Epic, in Tuscon, Arizona. Current group president, Micki Minner, enthusiastically shared with me that Polio Epic is a dynamic, ever-enlarging support group with strong programs and powerful outreach. It attracts folks from all over the state to their regular meetings.  To learn more, check out their website here… PolioEpicLogo-801-x-83


The Search for Anthology Authors Continues…

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

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

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

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

Thank you!

Sunny

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Norene Senkbeil

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

 

 Where can you be?

DSCN15881eevv

 

P.S. Quick report on my weight loss program: since May 13th I have lost 4.5 pounds. Onward and upward!


Do you ever shop on Amazon? If yes, next time you do, if you would go to any Amazon link on this blog (like the one below) and do that day’s shopping, it wouldimages (4)win win help me a little too, providing a small commission. There would be absolutely no difference for you, but there would be a small boost for me. We would both end up winners that day!  Thanks for considering this win-win option.


The links below and throughout this blog are affiliate links. This means, at no additional cost to you, I may get a small commission if you stay on the link and make a purchase anywhere on that website. Thanks for your support in this way!



LT - 090909 - 250x250 Logo

Wal-Mart.com USA, LLC


 

Recipes for Regeneration

 The snow dissipates. 
 The springtime flowers emerge. 
  Man regenerates.
–Haiku by Frederick M. Maynard, M.D.

 

Regeneration is my goal now that spring has arrived. And especially now that my doctor just orderedDSCN2692 me to lose ten pounds by Halloween or else! The “else” would be unwanted medication with weird unpredictable side effects, and gradual systemic breakdown ultimately leading to disease and death. Not good.

So that’s it! I am sick of being almost 50 pounds too heavy. This situation is embarrassing, serious, disgusting, and super scary. I must lose weight or become morbidly obese. Yuk! Who needs that repugnant label next to your name?

It’s up to me. Yeah sure, obesity’s an American epidemic. Yeah sure, taking off pounds and pounds of fat is hard. Especially for someone who is a sedentary wheelchair user, like me. But there are a lot of American polio survivors that use wheelchairs who are not so overweight. I truly believe that “all things are possible,” in spite of being difficult. All I have to do is look around me to see the success stories.

So, how will I do what my physician firmly advised?  It’s gonna take resolve, a new diet, and more exercise. I hope that sharing my story publicly might help others who are struggling with the same issue. Maybe writing this post will keep me accountable to my reading audience of friends as well? I am now cooking up an action plan and will be checking in with a progress note to you once a month on this blog through October. I am hereby altering my personal perspective on getting rid of my extra pounds, choosing to eat fresh foods with smarter carbohydrates and less sugar, and exercising more often–under the prescribed guidelines for polio survivors.

For starters today, here are three more specific wellness ideas–“recipes for regeneration”– that can become part of the action plan…

Recipe One: Emotional, Intellectual, and Spiritual Resolve

Step One: I dig deep. Way deep. Back to the unflinching resolve that I learned during my childhood rehab from acute polio. Set a goal and achieve it. Polio survivors know how to do that well. I can feel it. That perspective is coming back to me.  I dig deep and take the first steps. My willpower gets stronger as I keep moving.

Step Two: I focus. My eyes are narrowing. My grinding grit and laser drive to succeed take me back to that 18806_956653137698640_7321545173920855628_nxxstubborn, dedicated, unrelenting, hard core self. Now I have engaged an unrelenting commitment to eat properly and go to the gym to workout. I connect to WeightWatchers Online and plan my weekly menus. I have engaged a super-friend to help me cook. I plan to  workout at my gym three to five times per week. Then I’ll report to my inner circle of close friends at the end of each week on how many times I got there. My daily schedule will revolve around these critical tactics to achieve that new health goal: ten pounds off by late October!

Step Three: I pray.  May the Lord give me the daily inspiration to continue this journey back to wellness and regeneration. I wasn’t born overweight. I don’t have to be so heavy now. And may I have the heart and eyes to be open to this spiritual blessing to me and others as I find joy and little miracles of support and encouragement all along the way.

Recipe Two: A Lovely Spring Soup

Here is a very tasty, low calorie soup that I discovered last week. (Found it at WeightWatchers Online.)  Just thought you might like to try it sometime…

spring soup recipe

Recipe Three: A New Workout Technique

When I go to the gym, one thing I do is workout on the NuStep machine. Ever seen one or used one? DSCN2439xxIt’s a great option because one doesn’t need much leg power to use it, but it can provide an aerobic workout. How to effectively pace the workout is a key for burning calories without overdoing the exercise.

Here is a method I just learned from Frederick M. Maynard, M.D., well-known physiatrist and medical expert on the late effects of polio and post-polio disability.  He is a man who works out to stay healthy himself, so he also speaks from personal experience.

Dr. Maynard writes:

New Workout Exercise Research finds significant benefits for High Intensity Interval Training (HIIT) compared to Conventional Aerobic Training (CAT). HIIT is ideally performed for only 20 minutes 3 times per week and involves alternating 60 seconds of ‘high intensity exertion,’ defined as 7-8 on a 1-10 perceived intensity of exertion scale and/or 80%-90% of estimated maximum heart rate. CAT is performed for 20-40 minutes at moderate to high intensity exertion continuously 5 times per week.

Researchers found that although CAT burned more calories per session than HIIT, people who did 15 weeks of HIIT burned 900% more fat than those who did 20 weeks of CAT, likely because it resulted in a significant increase in Basal Metabolic rate.

What might this mean to polio survivors? It has long been recommended that polio survivors utilize principles of Interval Training in order to make participation in Aerobic Training possible, given their common limitations of moderate to severe weakness in limb muscles. This research suggests that if a person’s primary goal for doing an exercise program is to achieve weight loss, then doing it with an HIIT approach may help obtain the desired outcome.

Here are the steps to try this out:

1) Pick a feasible activity: stationary bicycle, NuStep, swimming, arm ergometry, treadmill walking, etc. It needs to be an activity that can be performed without struggle, be possible to engage in 3 to 4 times per week and be done briefly without risk of harm at moderate intensity levels.

2) Do the activity at low comfortable levels of exertion for 3 to 5 minutes as a warm up.

3) Then do a speed interval of the activity at as high an intensity as possible (faster and/or harder resistance) for 30 seconds, with a goal of doing it for 60 seconds at gradually higher intensities.

4) Then do a rest break or light interval for 30-60 seconds, the same length of time as the speed interval. Keep doing the activity at a leisurely or comfortable speed during this interval.

5) Repeat the speed interval and rest interval for 2 or 3 times, and build up to a goal of a 20-minute session or bout of exercise.

6) Do a bout of exercise every other day or 3 times per week.

This approach to exercising for weight loss and improved fitness for polio survivors has not been scientifically studied or proven to be effective. However, in my opinion, it makes sense to try to incorporate as many of the principles of HIIT as possible into any polio survivor’s exercise program. Many polio survivors may need the professional advice and coaching of a doctor, therapist or trainer to be able to conduct these programs effectively. The long-established important principles of pacing and avoiding overuse injury or harm must still be honored.

Please share your experiences of trying this approach out with us by way of the comment section below.

 –Frederick M. Maynard, MD
___________________

My personal regeneration program just started.

Am off to the gym now…

 

 

More Later,

Sunny

Points to Ponder:

Do you have any practical ideas to share with us on successful weight loss tactics for people living with polio?

Have you ever lost weight and kept it off? How did you do it?

_______________________________________________________________

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

Just go to the right sidebar here to sign up.

____________________________________________________________________

 

Online Jewelry Making Classes
Wal-Mart.com USA, LLC

Can You Haiku?

 

Bye-Bye Winter!

Bubbles fly on breeze DSCN2682cc

Spring’s chilly warmth heats my soul 

Confinement’s blown off!


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

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

Here’s the formula:

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

 

Here’s another semi-spontaneous example:

 

On Old Friends Making Life Work

Crispy trees green, greyDSCN2035aa

Witness our friendship’s summer

Wheels keep us moving.


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

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

Oh, let’s just have fun!

Woohoo!

It’s springtime in the Northern Hemisphere!


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

Just go to the right sidebar here to sign up.


 


Wal-Mart.com USA, LLC

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.

f3fae57c2f66595774768bafbadfb3aa vv

“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

 


Wal-Mart.com USA, LLC

Way Back When: The Lost Anthology — Chapter Two

Background  

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 resonate with their feelings and messages.

___________________________________________________________

Chapter Two is a poem composed by Joyce Tepley way back when…

 

Paradox

Waves of grief break against thewave

solid rock of reason

splashing salty tears

that fill the tide pools of my soul.

Grief

the paradox of grief

as it empties it also fills

as it washes it also hones.

Tears of joy and sorrow mingle

like the currents of one ocean

with another.

There is always mixture

feelings come in pairs

the more I reach for joy

the more I move toward sadness

the more love blows clear

the more it stirs the murky ocean floor

of hate.

Time and tide wait for no man.Butterfly

The unending cycle of death and rebirth

continually plays itself out.

There is no end

only transformation.


About the Author

images (3)ccJoyce Ann Tepley, retired from a forty-year career as a clinical social worker, has dedicated the rest of her life to honoring those who thrive through adversity by telling their stories. Joyce had polio in 1955 at the age of 9 and walked withthe aid of braces and a cane. She also uses a wheelchair. She is a member of the National Association of Social Workers, the Texas Coalition of Individuals With Disabilities and the International Post-Polio Health Association. Tepley lives in Dallas, Texas, with her husband Phil and their dog Kati.

Joyce recently wrote a book (previously reviewed on this blog) titled: Thriving Through It: How They Do It.      You can find it on Amazon:

Joyce also has a new blog, Thriver Living Community.

Check it out at:      http://thriverlivingcommunity.com/



 Happy

2011_daffodilsBlueVase vv

Easter

time!


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!

 

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 out there?  Tree_hugn_bunny_by_Bluesun84dd

 


 

 

Way Back When: The Lost Anthology — Chapter One

 

1924619_893466217370802_1088286595911170617_nAlmost 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 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.  They are heartfelt, intimate and describe living with polio in earlier times. We can resonate with their messages and meanings.

I only know two of the 30 authors. One is a good friend; one was a highly respected disability rights leader who has since passed away.


 At the end of this post 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. If you are one, or know of one, please contact me at sunnyrollerblog@gmail.com. Thank you!


The title of this post-polio collection is,

Way Back When: The Lost Anthology.

The following essay is now officially Chapter One. Future chapters, each written by a separate author, will be published intermittently over the coming months, as authors come forward and provide permission.

This first treasure was sent to us by the late Irving Kenneth Zola (1935-1994). His piece is also published on his homepage.


 

 WHY MARCIA IS MY FAVORITE NAME

by Irving Kenneth Zola

There was no other word for it. My friends were just pushy. I knew they meant well, but the last thing I wanted to do was go to a dance, especially in my condition. ‘In my condition.’ The words rankled. If I just looked at myself in the mirror, I felt okay. Not bad looking. No adolescent acne. Some people even said I had nice eyes. But I was most pleased with my face–no peach fuzz. I stroked my cheeks. This 5 o’clock shadow felt like one of the few good inheritances from my father’s side of the family. Besides, the idea of having to shave every day made me feel masculine, a virile 16 1/2. But if I stepped back, the rest of my image undid me. I didn’t feel strong leaning on these two crutches and dragging myself around at a snail’s pace. And though I knew I’d improve somewhat, my doctor had been brutally honest. “The 1951 Red Sox will have to do without you…Contact sports are out. You’ll never run a race again nor will you ever walk unaided.” Such was my polio legacy.

The phone was ringing. Maybe I could tell Zummie and Hank that I wasn’t feeling well. Besides, it was a long schlep down the stairs and perhaps even harder to get into the Community Center. But as I hopped to the phone, I knew they wouldn’t buy it. They’d already worked out how, if necessary, they’d carry me up the stairs. “But I’ll be embarrassed,” I argued. “Bullshit,” they eloquently countered.

The phone call set the time. They’d be by to pick me up at 8. For the tenth time I went into the bathroom to comb my hair. I felt like an ass. It was as if this was the only part of my body I could control. “How do I look?” I asked as I made my final appearance in the hallway. My mother stopped washing the dishes and smiled, “Very handsome.” My father shook his head in agreement and came over to give me a few dollars of spending money. My younger brother Michael just giggled. When the bell rang and I turned to go, they all kissed me good-bye, told me not to stay out too late but, thank God, they didn’t tell me to “Be careful.”

My friends were at the door. A little too ready and eager, I thought to myself. It was easier to go downstairs if I didn’t have two crutches under the same arm, so I asked Zummie if he’d take one. Then leaning on the railing for support, I began the slow descent down the four flights from our apartment.

Once in the car, I asked who was going to be there. “Oh, the usual crowd” was the reply, and we began to joke about the likelihood of any “action.” The trip was quick–less than fifteen minutes.

As I slowly climbed the stairs to the Community Center, I realized that no one was paying much attention. Perhaps with no visible scars, people just thought I’d had an athletic injury. The first few minutes were easy. As we settled in a corner, others came by to say “Hello!” “Good to see you again!” “How’ve you been?” The questions required little of me. “Okay.” “Thanks.” “Fine.” I answered with a smile. But down deep I was wondering what the hell I was doing here.

I could hear the music playing but I certainly wasn’t in a hurry to follow it. I would have been content to just sit on the staircase but the casual, “C’mon, let’s see what’s doing!” dashed that hope. Using the banister for support, I was back on my crutches. I wondered where in the dance hall I could hide. But when we got there a moment later, I realized it wasn’t necessary. I was hardly the only guy not dancing. In fact, relatively few of my friends were. All of us milled to one side, looking over the girls, commenting on who was dancing with whom, who that new girl was and wow did that one look great in a tight sweater.

Almost imperceptibly conversation turned to next week’s big event–a images (3) sweenie roast down Nantasket Beach. “Sounds like fun,” I said.

“Who are you gonna take?” asked Zummie.

“My mother,” I answered sardonically.

“C’mon…seriously,” chimed in Hank.

“I hadn’t thought about it.” It was a lie. I’d been thinking about it for weeks but it had been a long time since I’d been out on a date. It didn’t seem fair to call up a girl out of the blue. I wasn’t so much afraid that she’d say “No” but that she’d accept out of pity or worse, ignorance of what she was getting into. I felt girls should at least see me face-to-face before going out. For these reasons I wouldn’t let my friends fix me up.

“Why don’t you take Marcia?” suggested Zummie with a not so believable innocent air.

“Who?” I asked.

“Marcia. You know, the one over there with the frizzy hair.”

I looked over in the direction he was pointing. She was dancing with another girl. At least that meant she didn’t have a steady. I looked at her very closely. She was cute–brown curly hair, freckles, nice Jewish nose, and a figure which showed off quite well in a short sleeve blouse.

“She doesn’t even know me.”

“Sure she does. She was even asking about you.”

“Bull,” I said. Part of me wanted to believe, but I let it go. So did my friends. In reality none of us did. We were merely biding our time.

After what seemed like a decent interval, I asked, “What did you say that girl’s name in the green blouse was?”

“Marcia, you dumb asshole,” answered Hank.

Subtlety was clearly going to get me nowhere. “How do you know that she’s interested in me?”

“Contacts,” he winked.

“What if she says ‘No’?”

“She won’t…You’re too cute,” said Gerry who’d been standing on the edge of our threesome. I tried to hit him with my crutch but I missed.

“What have you got to lose?” asked Zummie.

Everything, I thought to myself. But somehow the pressure was difficult to resist. I knew my friends really cared about me and wouldn’t have set me up for a fall. So, ambivalently, I hopped over to where she stood talking with a girlfriend.

“Marcia?” I interrupted.

images (5)ssShe turned to me smiling. Five minutes after we’d spoken I had no recollection of what I’d said! All I knew was that she’d accepted my invitation and I’d agreed to call during the week to make final arrangements. I was so excited by her reply I didn’t even think to spend the rest of the evening with her. Maybe I thought if she got to know me better, she’d change her mind.

During that week panic set in. Amongst the arrangements I thought of making was calling the thing off. The whole situation was crazy. She didn’t know me. I didn’t know her. Besides a weenie roast was a hell of a way to have a first date.

Somehow the seven days passed and Saturday night was here. Again my parents were solicitous. But when my mother told me to bundle up, I got very upset.

“But it’s nearly 80 degrees out there!” I snapped.

Undeterred she went on. “Still you never can tell…When it gets late, you might get cold.”

Her remark sparked in me a minor anxiety attack. In it I saw a veiled reference to the fact that Marcia might possibly go off and leave me alone. It’s happened to other guys before, I thought to myself. Only my 8-year-old brother’s query, “Why can’t I go along?” kept me from exploding. That weenie roasts were only a place for big boys sent him away in a huff but allowed all of us to laugh anxiously.

My friends soon arrived and off we went to pick up Marcia. Luckily it was the style of the time to announce one’s arrival with a beep of a car horn. Thus I was spared having to climb the stairs to her house and meet her parents. I didn’t know what they would or would not ask me. I just didn’t want to deal with any questions. Marcia quickly bounced down the stairs and squeezed in beside me. The long ride to Nantasket passed quickly as we talked about previous jobs, friends, school, plans.

My sense of ease was broken when we encountered the beach. I’d forgotten about the sand and how difficult it was to keep my crutches from slipping and me with them. Marcia went first. With guiding remarks like, “This place looks solid enough to lean on,” we finally made it to the bonfire. I didn’t feel like moving any further so I suggested a nearby spot for the blanket. When she spread it out, anchoring the corners with rocks, I tried to ease myself down. It was no use. The trek from the car had exhausted me so I somewhat ungracefully plopped to the ground.

Only then did I realize how difficult it was going to be to play the manly role–coming back and forth with drinks and food. But Marcia spared me. “What would you like on yours?” she said, jumping to her feet. It was only then I let myself really look at her. She was wearing shorts and a halter with a pullover tied around her waist. She looked lovely but all I wittily could say was, “I’ll take the works.”

The early evening passed in talk, food, and songs but as the fire died down,images (7)11 couples began to take their blankets and drift away. A sea breeze wafted across the water. Awkwardly I put my arm around Marcia to fend off the cold. At least that would be my excuse if she pulled away. But she didn’t. Someone turned on their portable radio. As romantic music filled the night, I whispered, “It’s beautiful enough to dance to and you are beautiful enough to dance with but I…”

She interrupted me with her lips, answering in that kiss far more questions about myself that I had ever imagined I was asking.

 copyright Irving Kenneth Zola


About the Author…

At the time of his death, Dr. Zola was the Mortimer Gryzmish Professor of Human Relations at Brandeis and president of the Eastern Sociological Society. He had taught at the Brandeis campus in Waltham, Mass., since 1963, and formerly headed its sociology department.

Professor Zola [had] polio when he was 16, and used canes and braces to help him walk. His disabilities were increased by injuries suffered in an automobile accident when he was 19.

Discussing ways to enhance the self-esteem of the disabled, Professor Zola said in 1988, “Until we own our disability as an important part, though not necessarily all, of our identity, any attempt to create a meaningful pride, social movement or culture is doomed.”

Irvpic 1His writings included an autobiography, “Missing Pieces: A Chronicle of Living with a Disability,” published in 1982. He edited “Ordinary Lives: Voices of Disability and Disease,” a 1982 anthology that was praised as a diverse collection of fictional and personal accounts.

He was a founding member and counselor at the Boston Self Help Center, an advocacy and counseling organization for people with chronic diseases and disabilities. He served as the center’s executive director from 1982 to 1987.

He was also chairman of the medical sociology section of the American Sociological Association, a consultant to the World Health Organization and a member of President Clinton’s transition team on health care. He won numerous awards, and was a fellow of the American Association for the Advancement of Science.

He was born in Boston, graduated from Boston Latin School and received a B.A. from Harvard in 1956 and a Ph.D. from Harvard in 1962.      (Eric Pace, The New York Times, December 8, 1994)


images (6) m

Stay tuned for future glimpses into the younger days and adventures of polio survivors in Chapter Two of…

Way Back When: The Lost Anthology.

Sunny

_______________________________________________

Currently searching for the following missing authors:

Mary Ellen Nyberg Hemby

Floy Schoenfelder

Lee Whipple

William Wild

Alan Oberdeck

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

E.J. Anderegg, Jr.

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

 

Are you out there?  images (3)zz


 

 


 

 

 

_______________________________________________

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…


Free Shipping on orders over $50. Regain your freedom. Find scooters, wheelchairs, lift chairs and more.

Starbucks

Fire Mountain Gems and Beads

Shutterfly Evergreen 300x600

“If you’re going through hell, keep going.”–Winston Churchill

BOOK REVIEW

Just read an autobiography by polio survivor and actor, John Mahon.  It’s titled, A Life of Make Believe: From Paralysis to Hollywood. 

10913-3908 jm

John Mahon

This is not a fluffy piece of writing. It is direct, curt and even discourteous at times. In it Mahon describes, incident by incident, his rowdy, turbulent, often agitated journey to become an actor–in spite of being marked by an arm that was obviously paralyzed by polio. For aspiring movie stars, achieving fame, fortune and a sense of professional security is far from easy now, and it was even tougher in recent decades. The 50s, 60s, 70s and 80s especially reeked with harsh disability discrimination. And in dealing with his physical imperfection in a body-beautiful business, John became a fighter–a good looking bad boy–who often barreled and bashed his way through life–chasing his heartfelt dream–to be an actor with a successful and fulfilling career on stage.

In spite of numerous disorderly encounters while working toward his vision of becoming a successful entertainer, John Mahon never, never gave up.  He got shot down, rejected, and swindled, but he got right back up and kept on fighting.

His endurance reminded me in some ways of Winston Churchill, who fought World War II, quote-continuous-effort-not-strength-or-intelligence-is-the-key-to-unlocking-our-potential-winston-churchill-37149 wcpersevered, and eventually won the peace. Churchill had so much to teach the world about the value of continuous effort and the courage to keep going.

He may not know it yet, but I believe John’s story runs parallel to each of our own life-with-polio stories. Our individual goals may have been different, but we each had to work so persistently and diligently to prove ourselves–to excel with a disability in a non-disabled culture. To survive, many, probably all, of us worked every day at minimizing a socially-obvious disability with braces or crutches; or at passing for normal, hiding an impairment, like a weak hand, that, if discovered, would reveal our “malformations.”  I did it too. Whew. Makes me exhausted just thinking about it.

That was not easy.

At all.

Because as a reader, I vicariously trudged through John’s hellish-battles and hardships (fist-fights, doors bashed in, getting “canned”) with him in the first chapters, I was genuinely relieved to finally immerse in his later life moments of  peace and soul-nurturing insights. I believe that age, experience, real love, and conscious efforts at deep introspection have awarded John with a hard-won personal treasure–his momentary and penetrating glimmers of God.

Thanks for sharing the following moments, John…

After a breakdown, John’s good friend, Jack, takes him in. John writes with gratitude about his peaceful Pacific coast moments…

Jack had rented an apartment on the second floor of a home located in the north end of Malibu, on a palisade overlooking the Pacific, with a panoramic view of the ocean and coastline. We all know the ocean has boundaries, yet, from that bluff, it appeared to travel into forever…that sight in Malibu was magic. In the evening I would listen to the sound of waves coming to rest. Sometimes they would roll in gently; other times they crashed onto the sand below. I can’t tell you how grateful I am for those many evenings viewing the most gorgeous sunsets and starlit skies imaginable.

A few years later, he describes how he was “touched by an angel”…

I once flew to Salt Lake City, Utah, where the series Touched By An Angel was being shot. When I walked into the makeup trailer, Della Reese was sitting having her makeup done. I remember her saying to me, “God bless you today,” as she rested her hand on my shoulder. I swear a feeling of peace and harmony overtook me…Meeting  and working with such an unquestionably incomparable spiritual individual was a gift.

Laying out syntax that is not only brisk, but downright brusque, the author also describes a redeeming moment when he finally begins to find meaning in his disability…

Any number of times I had wondered why I was the one decked by polio. In 1979, walking on that sound stage, I may have discovered the reason. Infantile paralysis gave me an opportunity to help others; it only took twenty-nine years for me to discover it. My involvement with the Media Access Office[teaching the trade to young actors with a disability] made it clearer than ever that I had been living in two worlds: the gimp world, and the “normal world.”

download

John Mahon today

John’s book, A Life of Make Believe: From Paralysis to Hollywood, is filled with unique stories and snippets about the many famous movie stars he encountered as an actor–some he liked and respected; some he didn’t. From his seasoned actor’s perspective, he discusses his not-too-positive impression of reality TV today. From a polio survivor’s perspective he comments on the American with Disabilities Act. And from a father’s point of view he describes the ongoing devotion he holds for his children.

Mahon’s autobiography is also in a constant state of revision, John tells me. But I guess that’s true for all of us–as our perceptions and memories emerge, our life stories continue to morph and unfold.

If you are a movie buff and want to learn a little more about an array of great stage and screen stars like Al Pacino, James Garner and Broderick Crawford …if you want to get into a terse guy-story that is easy to read and definitely straightforward, then get yourself a copy of John Mahon’s new book.

Click on this link to have it sent right to your door:

To connect with John Mahon directly, write to him at:  alifeofmakebelieve@gmail.com or find him on Facebook.

At the end of his narrative, John candidly reveals, “I have not considered myself successful in any typical, conventional, usual or ordinary way…

My success was in continuing the journey.”

____________________________________ 

P.S. I believe it’s much the same for most of us. When we’ve gone through hell, as Churchill asserted, we have indeed, kept going.

Through the tough times with a post-polio disability, that magical life spirit deep inside our souls popped up and nudged us forward. 

Lately, as we’ve grown older, we’ve needed to astutely adapt and update our strategies and tactics a bit.  And as we do, we demonstrate to those around us our visibly unique, but certainly viable ways.

May we all continue to proceed, flourish and endure as we …  94d5ebc810b2dc69f3ebaf919b973ba7

Winston Churchill, also known as “The British Bulldog”

 

 


 Have you ever noticed how much super-persistence you continue to have?  

Is it still working for you?


If you enjoyed this article and would like to receive private updates about the newest post, consider becoming a subscriber. Just sign up at the subscribe box on this page’s right sidebar. It’s free and convenient.

Also, if you have a book you would like reviewed on this blog, write to me at sunnyrollerblog@gmail.com.  


 

Free Shipping on orders over $50. Regain your freedom. Find scooters, wheelchairs, lift chairs and more.

StarbucksFire Mountain Gems and Beads Shutterfly Photo Books 300x600

Prayer, Prioritizing, Patience, Persisting and P…

BOOK REVIEW

All the Steps I Have Taken Then and Now

by Linda L. Christianson

 

10636304_889537991096958_7636276891998002501_n (1)

“Our lives are like quilts – bits and pieces, joy and sorrow, stitched with love.” –Anonymous

 

Linda Christianson loves to quilt. Writing her memoir, much like creating a quilt, must have given her an important chance to examine and then thoughtfully interlace the pieces of her life together.

As she put pen to paper, Linda had to examine and reflect upon each piece of her life– growing up as a child who was living with polio, starting a career as a young woman, getting married, having children and now enjoying grandchildren. Weaving with words, she put her life in order–just as the quilter does when methodically sewing together colorful fabric shapes into what eventually becomes a fully congruent work of art.

Taking a look at one’s life with polio can be a grueling experience that takes gut-wrenching courage. One must unearth those deep childhood sorrows, the agonizing emotional horrors, physical losses, and frightening medical lacerations. Then the writer must somehow put them into perspective–explaining the pain and healing process from an adult point of view. That’s a lot of work.

But the reward for that arduous research and reflection is being able to finally and fully see the fiber of our life as a whole–to know our personal story as its own unique, intricate, even awe-inspiring narrative. Once the big picture crystallizes, the question soon becomes “how will we choose to frame our autobiographical portrait?” What spin do we want to put on our life as a whole?

Christianson has clearly chosen her spin. As she reviewed her life’s difficulties, she also took a fresh look at all of the wonderful people, family and friends, who had influenced and strengthened her through so many decades.  Having developed a strong spiritual life, she reassessed with gratitude the fortunate circumstances and beautiful places she has known.

As she revisited her hospitals, and recounted her numerous summertime surgeries, her split sized orthopedic shoes, crutches, and unwanted leg braces, she also described sunshiny childhood memories on the family farm…

“Despite the crutches, I was still able to get to the top of the corn crib, which was where we had a playhouse. We would build all our furniture and cupboards out of wooden peach crates left from my mother’s  canning. Climbing up wasn’t very easy, but my arms were strong, and the slivers I got in my knees as I pulled myself up were easy to get out. What fun we had!”

Then moving forward, as we all do somehow, she described pulling herself through adolescence and up into adulthood.   She worked hard, went to school, established a career as a helping professional, married, taught her kids to always do well at whatever they tried, and now in her sixties, is quoted as saying, “busy people always have time to help out.” Today Linda visits classrooms of elementary school children and is an invited speaker at community meetings. She wants to provide support, encouragement and a little enlightenment about life’s possibilities. She shares the “Four P’s” which are her personal guidelines for weaving a rich and colorful life:

Prayer, Prioritizing, Patience, and Persisting

images (5)kincade

1. “Each day must start with time for PRAYER using my Thomas Kinkade devotional book and having my first cup of coffee.” Her daily readings are from Beside Still Waters, published by Thomas Nelson in 1994. “It has the most beautiful pictures on every page.”  She also reads Seasons of Light  and Beyond the Garden Gate. “Any one of these books I can pick up and read and feel so relaxed from the words and from the paintings I find there.”

Click here to find Thomas Kinkade’s devotionals on Amazon

2. PRIORITIZING  is very important for me as I always want to accomplish more than I should. Planning to do the things that must be done is necessary and then I can look ahead if my mind and body agree on doing more.

3. Next is PATIENCE as I [carefully place and strap] my long left leg brace [on my leg] so that I will be able to walk. 

4. PERSISTING is just sticking with the project until it is completed.

Poliomyelitis, at a very young age, is the reason for all these “P’s.” I stay focused on them all day through, and with God’s guidance my days are wonderfully full. It is important to me that I live my life as a canvas, putting all the color I can into it.

Actually, I think Linda might want to incorporate a “Fifth P” into her schema that can be seen as a metaphor for what she is doing these days as a woman who had polio and has made life work.

That obvious “P” to me would be her productive, passionate and pleasurable post-polio pastime: Patchwork Quilting!  She even says, “My favorite pastime is quilting– putting those pieces together to blend and make a most beautiful piece of art. It is like…. all the happiness and goodness…in my life.

Desktop7 lc

“I weave in faith, and God finds the threads.” –Linda L. Christianson

 

Linda welcomes your messages to exchange ideas about quilting or to discuss her book about growing up with polio in rural Minnesota. To connect, send a message through her Facebook page.  Or use this email address: llcallthesteps@gofast.am

If you would like to have a copy of Linda’s 93-page chronicle for your personal library, here’s how–click on the picture below…


P.S.  Have you written a book?  If you would like to have it showcased on this blog, please contact me at sunnyrollerblog@gmail.com.


Have you ever thought about the major turning points in your life with polio?

What kept you going?

Ever considered writing a personal memoir describing your life experiences–for your children and grandchildren to read and treasure as they focus on living their lives successfully?  Bet you’d have some great ideas for them.


Starbucks

Fire Mountain Gems and Beads

Online Fabric Patterning with Wax Resist Class