Messing With The Great Pumpkin

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

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

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

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

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

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

 

It’s the…

grape pumpkin

 

“GRAPE PUMPKIN!”

 

 

_______________________________________-

And so, it is in the spirit of enjoyment,  

merry -making and 

The Grape Pumpkin

that

I wish you a very

Happy Halloween!

Thanks for Reading,

summer.jpg

Sunny

 

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

you may want to try this season…

linus

From my friend, Susan.

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

 

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

Gulp. I was nervous.

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

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

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

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

Thanks so very much for your

help and support!

e1c6f423121d3f6b9351900de1fd98acvvv

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

 

 

 

 

 

 

Starbucks

Celebrating Independence Day Makes Me Think…

…About Moving From Independence to Healthy Interdependence

 

DSC03697 flagJuly Fourth. It’s Independence Day weekend in America; a time to celebrate that we live in the “land of the free and the home of the brave.”  And this weekend, the national celebration also makes me think about my own sense of independence.

As a polio survivor for 63 years who has needed crutches, leg braces, and now a wheelchair and a scooter to get around, I was taught searing lessons about independence since the age of four. As children of the epidemics, we were  immersed, even indoctrinated, with the goals of becoming fiercely independent as we went through our initial rehabilitation from acute polio.  “Do it yourself! You fell down? Well, figure out how to get up on your own! It’s a cold, cruel world out there! You will always have to prove yourself to others,” were words I often heard from my parents and therapists. And they worked for me for a long time.

For fourteen-plus years, my 1950’s rehabilitation professionals convinced my family and me that I, as a young person who had a disability, was not sick, or defective. Neither was I destined to become a deviant object of charity. In fact, my mother always told me that I could do anything anybody else could do–just a bit differently. Our Wise Elders, the polio survivors in my national report, said they were told the same thing. One woman said she had a need to think independently from the time she was a young woman. She described how she traveled alone around the country and made other decisions that seemed imprudent to her non-disabled social group. Our stories of super achievement are numerous. But as we learned self-determination and self-respect, we were also taught not to be a burden on others.

WOW

Now that’s a loaded statement. One that needs unraveling–fast!  A burden? What’s that? What does this concept called independence really mean to us today? Is it the flip side of dependence? If independent means not being a burden on people, does that mean we should have less self-respect as we demurely become a dependent thorn in the side of others when we do reach out for help? Excess baggage? An affliction to them? Should we feel guilty? Defective? Unworthy? OMG: independence versus dependence. Let the unraveling begin with a new thought…

It’s the Fourth of July in America. Our greatest document, other than the Constitution, is the Declaration of Independence. For people who are growing older with the late effects of polio or simply growing older with the late effects of life, I say we need to draw up a more evolved document: The Declaration of Interdependence!  

Not independence. Not dependence. But interdependence: “the quality of being mutually reliant on each other.” 

It makes total sense, if we can shake our old ways of thinking. Under the guidance of this new declaration, we can begin to move from needing to fly solo so as not to bother others and prove ourselves worthy, into a new and lovely blessed state of healthy exchange. “I ask you for new kinds of help and I give you the help you need that I am capable of giving.”  It becomes a gracious and reciprocal experience that none of us will want to miss out on.

Trying to be that old kind of independent can be not only exhausting, but darn lonely. Working with a friend to plan a class reunion or a church event not only takes the load off me, but is a lot more fun. Who wants to do stuff alone all the time? That’s too independent! Trying to be strong and self-reliant can also be dangerous. Now while painting the fence or planting a garden, I could easily fall down, and then pop a bicep trying to push myself up from the ground. I say find a twenty-year old to do it. Then give him some of your best home baked cookies, some money and your full attention as he shares his life plans and interests. We have both gained from the experience. My friends and I trade favors. We drive each other to the airport and to our colonoscopies. I always have to drive my adapted car wherever we go, but my friends often chip in for gas. I listen intently to what my friends need to share with somebody and my buddies pay for dinner or buy me a device I can’t afford right now. It’s becoming easier for me to ask strangers for help when I need it too. We have always needed others and they have needed us. It just starts to look different as we age. As the poet says, “no man is an island.”

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…


 

Of That Unspoken Feared “Post-Polio Syndrome”…

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

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

_________________________________________________________________________

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

–Joan L. Headley, M.S.

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

__________________________________________________________________________

shadowxxIt’s How You Feel Within

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

We hide our fears,

Our weakness we somehow muster under

Go on and on and then…

The rumbles begin like thunder.

At first it’s just a little tired

And vitamins will help.

Some exercise, a little more sleep

Just get a hold of yourself!

cvb

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

“I can’t do that anymore”

And your family says “Come on, come on,

You’ve never been a quitter before.”

So you struggle up and say

“Yes that’s true.

I’ve been through so much already17711cc

I can beat this too!”

And then one day

That remembered day

You knew.

The rounds of doctors start,

And prayers flow from the heart.

Please Father God, not this again

This battle I must win!

But prayers go unanswered, weakness sets in

And pain, and most of all Fear.

Where will it end for me, Lord?

How will I be next year?

Take this my child and serve me wellgeranium

Even if it’s just your example

People will know by your actions and faith

That my care is always ample.

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

Locked in this body, that hurts when it moves

These legs with unsteady gait.

Remember my child, Milton wrote long ago–

“They also serve who only stand and wait.”

Acceptance and peace begin anew.P1000934xx

Your heart can sing again.

There is a wonderful life for me now…

It’s how you feel within!


ABOUT  THE  AUTHOR

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

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

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

 

butterfly

The Search for Anthology Authors Continues…

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

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

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

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

Thank you!

Sunny

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

 


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


 

“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!


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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.

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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

 


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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


 

 


 

 

 

_______________________________________________

“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?


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