Working on Wisdom

When I was a little girl, my German-American father used to sternly instruct, “Respect your elders!” It was usually when he wanted us kids to shape up and do what he said.

Now 60 years later, I have learned that his classic instruction remains in my heart and has burgeoned into a life lesson–bestowing much greater meaning. What I never knew at the age of seven was that as a mature woman, I would long to respect my elders…to seek them out and learn from them.

There was a wonderful advertisement on the Super Bowl last weekend. Did you see it? It was a Dodge commercial featuring a fervent group of expressive centenarians.  At the age of 100, each one had words of wisdom for us youngsters about how to live life successfully.

Have a look…

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I love that by way of this commercial, millions of children, teenagers and adults were suddenly impelled for one brief moment to think about the wisdom of our elders. And then the next night, that one commercial, out of all the rest, was spotlighted on ABC’s “World News Tonight.”

It’s even more interesting to note that in our 2007 study (See Wise Elder Report above) of 15 much younger “wise elders” in their 60s, 70s, and 80s, (individuals deemed as role models for aging well by their post-polio support group members) much of the same truth came out.

The younger post-polio wise elders agreed with the Super Bowl centenarians!

Here are three of their parallel ideas:

The Dodge centenarians said:  “Live for now because life is good. You make it good.”

The post-polio wise elders said:  It is essential to enjoy life and have fun. After working very hard earlier in life to achieve and achieve well, retirement emerged as a time to simply enjoy life more.  Employing a sense of humor was also designated to be important for coping well. “Laugh at yourself a lot; become a fun-loving mentor for others,” one person recommended.  “Take your scooter and be where you want to be—never feel like you are in the way,” another elder directed. An attractive former college English professor and now a prize-winning gardener and public speaker went on to say, “If you are paralyzed by polio, don’t be doubly paralyzed by life!” Further, another post-polio wise elder amicably advised, “when in doubt, go out for pizza!”

For me today, that means I will enthusiastically work to earn and save enough extra money so I can rent that big ground-grabber scooter and reserve that cozy wheelchair-accessible hotel room–as I joyfully anticipate making a summer trip to Colorado.  Woohoo!  Mountains, flowers, friends and wild gnarly animals–here I come in August! 

The centenarian said, “Don’t complain. Don’t bitch.”

The post-polio wise elders emphasized the importance of having a positive attitude.  Many believed that being optimistic got them through life and continues to do so. Two believed that they were born with a genetic leaning toward optimism. Another reflected that her original rehabilitation experience had encouraged an attitude of hope. Feeling self-pity was not an option during childhood rehabilitation and was ill- advised for late life. Comments noted were: “Make the best of things”, “Stay upbeat about life,” “Dwell on the good memories in life;” “Focus on life’s beauties that you appreciate.” Conversely, they warned against the negative: “Don’t dwell on the negative,” “Don’t hang around negative people,” and “Don’t get stuck in depression and complaining.”

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If I want to apply those words of wisdom today, instead of obsessing about my lethargic cabin fever blahs this week, after a huge snowstorm in Michigan, I will be grateful for not getting scooter-stuck in 19 inches of snow outside my door! And try hard to remember that, “Spring always comes.”  Gotta lighten up!

 

 

The Super Bowl centenarian said, “Tell the truth. Tell it like it is.”

The post-polio elders said,  “Be real,” and “Don’t do denial,” and “Accept new limitations.”  This call to truthfulness was expressed in a variety of ways:  “I say do what you can and that’s it.  I have to accept what I can do and know what I cannot do.” “It’s much better to set your own parameters than for someone else to do it.” “Take the message from ‘The Gambler’ song– know when to hold ’em; know when to fold ’em...” Accepting both early and new disability-related physical/medical characteristics was deemed to be foremost in importance. Fully accepting life and one’s self was an important coping strategy that has been adopted by the post-polio wise elders.

For me, that means not denying, but fully accepting and  ‘fessing up that using a wheelchair full time really requires a committed change in eating and exercise habits to stay healthy.  And that it’s important to reach out for help when it comes to such tough adaptations. Hmm…maybe I need a personal trainer.

Several of the wise elders whom I interviewed have now passed away; most have not. May I take this opportunity to thank them all, along with the Dodge centenarians, for teaching us more about living well as we age–with or without a disability.  May we continue to listen, learn and, as my Dad directed, respect our elders!

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Honor and Blessings to Our Post-Polio Wise Elders

 

P.S.    I hereby fully admit that I remain just a “wise elder-in-training.” It seems that every day I earnestly and openly search for new wisdom. As I seek out my favorite role models and look to their advice, I am also beginning to realize that my job is to ultimately become my own “number one wise elder.”

I have found, however, that the journey for that optimumSalzburg shops 1 truth is an imperfect, often rocky pilgrimage.  It’s ever-changing, messy; filled with trial and error, discouragement, elation.  It can be so ego-disheveling, but bit-by-bit, it also can be lovely and peace-producing.  I guess the best I can do, along with contemplating the advice of others, is to continue to listen to the soft voice deep within me–then really trust it. You?

 

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Do you have a personally-learned tidbit of wisdom to share with us here? Something that really works for you?

Do you have your own personal wise elder–post-polio or not–a role model for growing older gracefully with a post-polio disability ?

Who might he or she be?

What have you learned from them?

What might they teach all of us?

Would love to hear your thoughts by way of the comment section below…

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Follow this link to find more about … Wisdom

A Couple More Thoughts on Spirituality and Disability

“Pain Passes. Love lasts a lifetime.” (anonymous)

Quite often during my lifetime with a socially-obvious disability from polio, I DSC04588 thotshave lived as a human optical illusion.  Visually, I unintentionally convey a false impression to those who first see me. I am not always what I seem to be.

How many times have you seen strangers look at you with great pity in their eyes?  Or say things like, “You poor dear, it must be horrible to be confined to a wheelchair.”  How many times have you encountered misguided religious zealots in shopping malls who want to convert you and heal you on the spot because they assume you are weak and pathetic? Once, an old drunk stumbled up to me on the street. Singling me out, he handed me 35 cents in nickles and pennies and said, “here girl, you need this more than me,” then staggered away. I was 14 and with a bunch of suddenly dumbstruck teenage friends. So much for fitting in.

Ouch! That kind of stuff is painful.  Heavy sigh…guess I’ll never be good at making great first impressions.

I believe that those crazy encounters are generated by well-meaning, but sorely limited people, who see life mostly on a physical plane. They are the self-called realists who connect disability to discontent and human deficiency. They are the people who don’t really know us.

But what is it, exactly, that they don’t get?

Plenty!

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Personal Reflection Number One…

They don’t get that as we polio survivors grow older and wiser (see The Wise Elder Report above) with our disability, most of us have built strong social support networks. As Maya Angelou said, we have learned that “love saves us.” We enjoy life. We tap into being optimistic and have grown into greater, deeper self-acceptance. We have learned to use our assertiveness skills to our advantage and are well-educated. Finally, we are often spiritually tuned into powerful unseen dimensions because, thankfully, our disability has taken us there. And, for me, that last point is huge.

I believe that each of us has deep inside, a divine spark. It is a glimmer of God, a radiance and purity that longs to be affirmed. It is also a glimmer of God that affirms us and keeps us strong when we tap into it.

“Pain passes.  Love lasts a lifetime…”    I say, (stomp! stomp!) forgive and forget the pain, the false assumptions, the heartbreak, the goofy statements. Dwell in the love!  It works better!

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Personal Reflection Number Two...

But how do we tap into our spirituality? There are so many avenues. For starters, here are three simple ways I’ve used to connect with my spiritual self:

1. Meditate. Meditation is a mental exercise designed to bring about a heightened level of spiritual awareness and trigger a spiritual or religious experience.

Living alone and being semi-retired, I have extra time these days to sit quietly and meditate in the morning, which I love. Polio has relentlessly requested that I become more sedentary than ever, which I fought at first, but have found has at least one hidden advantage. I can relax and take time to focus on the positive–in the here and now. When I focus on the life force inside me, I find the experience to be renewing and calming. It also fills my brain with delightful and surprising new insights and ideas. So, the experience I am describing is–being still, and then calling upon God to be with me in the present moment. The experience soon turns into a two-way prayer.

Intrigued? Ready to learn more about this ancient practice now embraced as good for people of all ages in our nerve-racked culture? There are lots of good books out there on meditating. Check out this Amazon link: books on meditation Anyone have a favorite reference on meditation to recommend to others? 

2. Stay home or get together at a friend’s place and watch inspiring programs on television like the Super Soul Sunday shows that Oprah presents on her OWN TV channel, Sunday mornings. A wide range of fascinating guest speakers discuss matters of the soul with Oprah Winfrey. These guided conversations can be fun to tape and watch throughout the week, as well. She also has an appealing Facebook page you might want to check out.

3. Join kindred spirits at your chosen house of worship. For me, my spirituality and my religion are great equalizers. At church we are more than our physical bodies; we have a spirit to share and we share the Holy Spirit. Many of us need that social connection and that spirit connection to get through everyday life.

When I was a younger woman living with polio, I had several personal experiences with my church friends that were transforming. I call them “feeling the presence of God” or “Holy Spirit moments.”  Like the time I was sitting in my girlfriend’s big country kitchen with her. It was Christmas time and we were anxiously struggling to resolve some big life issue. Christmas carols softly filled the room with angelic melodies. The aroma of cinnamon potpourri simmering on the nearby stove calmed our senses. Her Christmas tree sparkled from the next room.  Suddenly she looked across the room and softly affirmed, “God is here with us.” Surprised, I stopped chattering. She was right. I felt engulfed by a mysterious sweet and calm presence. And in that moment we both knew everything we communally worried about that day would be okay. And it was.

And those are just a few ways to connect with our wonderful spirit within–with a vigorous, compassionate love–that certainly surpasses all pain.

sunn rAfter working my way to the ending of this post, all I can conclude at this moment is, “in the grand scheme of things, who cares that much about first impressions anyway!?”  

Being underestimated can actually be fun at times. It has given me many convenient chances to surprise–even stun people–in all kinds of positive ways.

And woohoo!    

That is rewarding–for everybody.

 

Onward and upward!

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What inspires you?

What might be some simple ways you have tapped into the spiritual part of yourself?

Sharing one idea here may help someone out there re-connect with the light inside themselves…

 

–Special thanks to my young friend, Catharina Rink, for sharing her recent photos (above) of Australian seascapes, as she is on an adventure and pilgrimage to discover the wonders of that vast country this year.   Currently in Melbourne.  Next stop: New Zealand!–

–Also many thanks to Catharina’s brother, Sebastian, who took the two photos of me at a favorite coffee shop while in Germany. Sebastian celebrates his 16th birthday this week! Vielen Dank, Herr Rink and alles gute zum geburtstag!–

 

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.  Enjoy!

 

 

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A Couple of Thoughts on Spirituality and Disability

Well, New Year’s Eve has come and gone and January rouses me into wintertime musings about life-Sun on river 22-past and present–as I begin to clarify my still-nebulous resolutions for the year ahead.

As imbibing in the spirits helped many of us ring in 2015, another kind of spirit comes into focus for me–a more important one–my spirit. Better said, my spirituality. It’s what gives me guidance and gets me through.

Spirituality: “the core part of us that gives us the power to transcend any experience at hand and seek meaning and purpose, to have faith, to love, to forgive, to pray, to meditate, to worship and see beyond the physical here and now. Spirituality is the inner force that animates human life.”

As we grow older, it seems that we have more life losses to grieve and be sad about. We are losing physical prowess, friends, lovers, family members and familiar things, like paper books, hand-written letters in the mail, even fun stuff like funny comic books, drive-in restaurants and movies.

But may we console ourselves with the simple, but profound truth that grief and happiness can gracefully exist side-by-side in our hearts.

I believe that as we grieve the very gradual loss of our physical abilities, we can increase the power of our spirits in new and exciting ways.

Personally cultivating our spirituality can not only have a positive and powerful effect on our own strength and energy, but also on the health and well-being of many people around us.

Here are a couple of personal reflections I’ve had along my spiritual way. Do either of them ring true for you?

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Personal Reflection Number One…

So many of us were told as youngsters that we had to depend on our brain to get us through life with an unusual body that was partially paralyzed. “Be smart, clever and well-educated and you will show people you can fit in.” 

But there was another important piece. Body and mind are interlaced with our spirit to make us complete. Some even say that we are all spirits on earth who just happen to have a body. And that spiritual transcendence can help us face our physical differences and challenges “with a clearer perspective, rising above the limits and pain initially imposed by the disability.”

As a person who has been living with a post-polio disability for sixty-two years now, my spirituality has helped me make sense of being unusual, physically. God works in unexpected ways, at surprising times and through unique people like you and me.

 

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Personal Reflection Number Two…

We have the power to effortlessly transfuse other souls on earth with enthusiasm and assurance. I really believe that we who have a socially- obvious disability with braces, crutches, wheelchairs, and a variety of physical differences have been put on a stage in this “theater of life.”

Like it or not, people notice us. People look at us. People even stare at us. And that has given us an automatic power to influence others in positive ways.

Being a person with a disability who genuinely emanates spiritual peace can have an amazing effect on so many people around us. How many times have you heard people say “you are such an inspiration to me?” Spiritual meditation can bring us a peaceful heart. That serenity in our eyes and in our overall countenance, surrounded by our appliances and asymmetries, automatically gives hope to those who are seeking inspiration.

Did you see the woman on Dancing with the Stars last year who came in second dancing on two prostheses? The power of her positive influence in America and around the world is huge. She has no idea.

And neither do we. We can and have been influencing the human condition on earth as we have transcended and transformed our polio-caused disability from weakness into strength.

When you think of it, there is great irony in knowing that because we have lost muscle power, we have the potential to give muscle, vitality and strength to the world and we don’t even have to say a word.

First and foremost, we simply have to be present among our fellow human beings. That’s it. Just show up. Just be there, among people. All the rest that we choose to do–like speaking, writing, listening, leading, following, praying for people, contributing through our work or our family jobs or a hundred other roles we may play—all of that is simply what we do. But what about the spirit driving all that activity? How does the divinity of our inner spirit inform our activity?

As I write this blog post, my first 2015 resolution is slowly emerging into crystal clarity.  I want to tap into my spirituality every single day this year…because I really, really, really respect and like my spirit. I will ask spirit every morning to lead me through the activities of that new day.

Okay spirit, I’m ready. What will happen? This is exciting.

 

4ec810a01e1d6PICT0016_large_medium 1Wishing you an enthusiastic year ahead.……….

 

Did any of these personal reflections on spirituality resonate with you?

Sharing your unique personal insights here might help enlighten someone who is earnestly searching for his or her own spiritual answers…

 

 

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The Colorado Post-Polio Wellness Retreat: Grasping Sweet Thorns in the Rockies

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It wasn’t the stunning mountain vistas 9,000 feet up, or the warm 90-degree swimming pool sparkling with joyful sunlight.  It wasn’t the cheery summer wildflowers popping up beside the woodland paths or the rushing waterfalls that met us as we wandered in and out of the nearby forests.

Nope.  It was the people.  And it was the polio. Somehow we had found each other and became freshly entwined. We, with our partially paralyzed post-polio bodies, made friends quickly, as if we had known each other since childhood.  

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Tree-top mountain view from the Georgetown Loop Railroad car.

Fifty-three of us attended the Colorado Post-Polio Wellness Retreat from August 17-20, 2014 at Rocky Mountain Village in Empire, Colorado. This experiential holistic wellness program for polio survivors featured guest speakers and planned activities revolving around three major themes: the mind, the body and the spirit. We slept in the Easter Seals camp’s rustic cabins, shared communal bathrooms, ate meals together in the large dining hall and joyfully participated in program sessions that ranged from aerobic exercise to zip lining. Yes…zip lining! We went on bird and wildflower hikes, and a recreational train ride through the mountains. We enjoyed a reflexology treatment, learned about post-polio syndrome, and heard about mindful meditation. Then we tie-dyed t-shirts. And that’s just a sampling of the rich program agenda. The entire retreat cost was $300.00 plus transportation.

At retreats like this I have found that we as participants each learn and grow in different ways, depending on what our life circumstances are at the time. What was going on at home? What new experiences and challenges had we been facing? What kind of people have come in and out of our lives lately? What new awareness about life was waiting to emerge? Mine became clearer and clearer to me each day of the retreat.stream

It was all about the flow and depths of compassion—that “sympathetic consciousness of others’ distress together with a desire to alleviate it.”  I saw it everywhere and was astounded by the amount of compassion these polio survivors had for one another. People connecting…polio survivors who had never met before feeling each other’s pain, need, grief, and joy…holding hands…hugging…crying…carrying cups of coffee for each other…picking each other up in golf carts to ease the daily trek around camp. One woman cried as she described to the group her plight as a young paralyzed Jewish girl hiding from the Nazis during WWII. We wanted to help her let go of her nightmare and replace it with love and optimism. Another woman anguished one morning at the breakfast table, expressing her fears about growing old, infirm and lonesome with a post-polio disability. Her kids don’t want to visit her anymore. She was in pain. We talked about making new and younger friends and transforming our homes into happy places that many will want to visit as we grow into late life.

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Reflexology treatments from one camper to another brought comfort and relief.

I have planned and attended nine post-polio wellness retreats since we started them in 2006 and this year the compassion I witnessed and felt was somehow exceptional.  At night in the cabin our group of women shared stories about how they became widows and got through the grief. It takes years and years to reconcile the loss of a true love. We listened and empathetically nodded our heads as one woman described her six-year road to healing from the sudden death of her husband–overcoming the disappearance of insensitive kids, returning to encouraging grief counselors and having many heart-to-heart lunches with friends in her book club. Two young women originally from India discovered they had both been cast off to orphanages there as young girls paralyzed by polio, then luckily adopted by American families. What they were delighted to learn was that now they only live a few miles from each other in Denver and with the help of public transit, can cultivate a warm friendship that may last a lifetime. If they had not attended this retreat, they might never have met.

Perhaps for me the most interesting reflection about compassion came during our large group discussion of spirituality and disability. It was when a lovely polio survivor named Karen told us all about an interlude she and her husband had encountered on a trip to Naples, Italy. They had found a monastery that had, over the years, necessarily evolved into a restaurant. After wandering in, they found a table, sat down and ordered their lunch. As they were waiting, a young priest asked if he might join them. They agreed and engaged in warm lunchtime chatter for quite a while.  Upon leaving, the couple rose and walked away toward the door of the restaurant. It suddenly became obvious to the friendly priest that Karen dragged a heavy brace on her leg and walked with a limp. Stunned with compassion he lovingly called out across the room to them both “Mia spina dulce!” rose(sometimes said, “il mia dulce spina”) in Italian. Translated, he was saying “my sweet thorn!” They looked back, smiled and never forgot what he had bellowed with affectionate sensitivity.

It was a commentary about the grace it takes to live well with a disability. Having a disability from polio is our thorn. It is the childhood stench of hot wet wool to rejuvenate weakened muscles, the pain of never being asked to a school dance or the terror of crutch-walking on ice and snow. It hurts, is unwanted, and can keep people away. How can this thorn be sweet, as the priest suggests? Therein lies our life challenge. Think of the rose.  At first as only a budding stem, it has ugly thorns, but as it grows and matures it becomes the most adored sweet-smelling bloom on the planet— the ancient symbol of love and beauty, a sign of compassion at funerals and the symbol of religious exemplars including the Virgin Mary.

I reflected that the nasty thorn, our disability, paradoxically supports, protects and raises us up to the grace, which is the rose in us–if we let it. We must accept it, make it work for us, and let the beauty begin. It is only with our thorn that we can ever hope to become a rose– as a rose is meant to be. That rose, that grace, is what I witnessed in Colorado. It was the overflowing of care and compassion these polio survivors had for each other. We deeply understood each other’s sorrows and thorns, softly embraced them together, and peacefully commingled to bless one another in many new ways. Only because we had grasped and accepted our thorn, could we offer each other the very rose we had become.

And…we had one heck of a lot of fun doing it!

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Another first-time zip-liner!

 

Happy New Year!  

What shall we look forward to?

 The next post-polio wellness retreats will be held on the shores of Lake Superior in Big Bay, Michigan in September 2015 and then high in the Rocky Mountains in Empire, Colorado in August 2016. Connect to Post-Polio Health International’s website for updates: http://post-polio.org/

 

Let’s Clink Our Champagne Glasses!

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“Hip, Hip, Hurrah!” 1888, oil on canvas by Norwegian-Danish painter Peder Severin Krøyer

 

“We must see the delicious beverage, then taste the lovely wine,  feel it on our tongue, smell the sweet aroma from the glass. Lastly, we need to use our fifth sense so we “clink” the glasses and hear the delightful sound…”

 

It’s time for us to have a wonderful party—a celebratory bash–to raise our glasses and communally toast having had polio. Three cheers for polio! We will clink together; then we will drink together!

What! Salute having had polio? Sound crazy? Maybe, but let’s think about it. One of the smartest and healthiest things we might do at this time in our lives is to celebrate the gifts that polio actually gave us—the many wonderful life moments that happened to us BECAUSE we had polio, not IN SPITE OF having had polio.

This is a controversial, highly-charged topic because having had polio was not easy. But for the sake of debate, let’s take a moment to broaden our thinking patterns here beyond the borders of “not easy.” Let us invoke a little more expansive view of our lives, especially when it comes to renewing our personal sense of meaning. Yes, yes. We all want to see polio eradicated worldwide because it kills and paralyzes people. No. No. We would never wish a post-polio disability on anyone, nor, if we could live life over, would we ever ask to have it again. However…we got it, were disabled by it, suffered and struggled with it, and have been mastering the art of living well with it for decades now.

Looking back, we know it’s true–a growing number of us have consciously turned living well with polio into, not just a goal, but a creative art form. We have not only been the adroit composers of our unique personal adaptations, attitudes, and alliances; we have become the masterpieces themselves. And we flourish.

I believe one of our secrets to thriving with polio is that we, first and foremost, quietly dismissed all those who gawked at us with pity, volunteered to Biblically heal us, needlessly tried to fix us, or gazed at our bent feet rather than into our eyes. As we have matured, we have learned to reject the shame and stigma of disability. What a freedom! We found out that such negativity gets old and is not useful. Out of necessity, we have had to become introspective from time to time, which inescapably fostered our personal character development. We have learned to be assertive when needed, to surround ourselves with loved ones, to think positively, get educated, find good resources, and enjoy life along the way.

Perhaps most importantly, we have learned to accept ourselves as we are. Many of us have evolved in our thinking to appreciate and lovingly embrace what used to be our primary nemesis–polio. In order to find peace and contentment, we have had to make friends with our disability. Not overcome it. Not hide it. And not fight it. Someone at the recent PHI Conference in St. Louis reflected, “Life doesn’t get easier, but it does get better.” Perhaps one reason life with polio is better is because we have become wise enough to embrace all of it—cause and effect. Polio has made us who we are today.

Our physical differences don’t matter much anymore because we are all beginning to look like everyone else our age anyway. We, however, know a bit more about aging gracefully, because we started sooner than all of our friends. We are aging with a disability. Many of our friends are aging into disability. If they’ll let us, we can actually help them with their new adjustments.

Our polio experience has given us everything from spontaneous moments of delight to life-long personal relationships we never would have had otherwise. Let’s take a long moment to praise, appreciate and clink our champagne glasses to all we have received, known and loved because of our polio…these have been polio’s gifts to us.

“What gifts,” you may ask, “did polio possibly give to me?” What is there to celebrate, to be grateful for? To open your thinking process, here is what a group of fellow polio survivors have shared from personal experience:

  • In 1964 I got to view Michelangelo’s Pieta at the New York World’s Fair for as long as I wanted to because people in wheelchairs were allowed to sit about 50 feet from the magnificently mesmerizing statue instead of having to stand on the conveyor belt being moved slowly past the statue. I could marvel at every fold in Mary’s gown carved from that huge hunk of white marble. (Clink!)
  • First, through all the wonderful polio survivors I have met, I have gained so much insight into life and all its inevitable ups and downs. Second, I have grown personally and I believe I have become much more sensitive to “the moment” and the value of self-reliance. These are blessings that came with polio. (Clink!)
  • I would never have been invited to travel to India to teach about the late effects of polio, ride an elephant and see the majestic Taj Mahal shine in the rain like a glazed luminescent pearl. (Clink!)
  • I don’t think I will ever be grateful for having had the disease. However, I am grateful for the opportunities that have come my way while dealing with the disability…the very special people I have met along my journey, the extraordinary experiences that I have encountered, and the drive I have developed to succeed in life. (Clink!)
  • I would not have met and married my husband if it hadn’t been for how struck he was by the contrast between my strong personality and my polio enhanced body with leg braces and a cane. I moved with effort due to my severe scoliosis, but stood proudly in a line of therapist colleagues introducing myself to lead a discussion group at a conference he was attending. He picked my discussion group and pursued my attention. Forty years later we still wonder how, of all the people in the world, we found each other and how good it still is. (Clink!)
  • A few years ago I had the opportunity to watch a superb young documentary filmmaker at work with her small crew, and to see how she turned much of what I said during a lengthy interview of more than an hour into images throughout the hour-long film. My voice was heard for no more than a couple of minutes but the film itself is crowded with images she found in the March of Dimes archives and other places – almost all of them completely unrelated to me personally, but some of which she spotted just by recalling our taped conversation. I learned a lot from this about the art of filmmaking. No doubt I could’ve learned roughly the same thing without the dubious benefit of having had polio. But in fact, in this case, the benefit arrived because of the polio. (Clink!)
  • Polio has given me the ability to view life and situations “outside of the box.”  This has enabled me to do the many, many challenging things that I have accomplished in ways that would not be typical for most people. (Clink!)
  • I learned to never feel sorry for myself; there are others worse off than me. (Clink!)
  • It has enabled me to relate to issues others with disabilities are facing. (Clink!)
  • I have met many wonderful, interesting people through my polio connections. Because of my polio, I have a worldwide network of supportive post-polio associates that I can link up with anytime. They are like “friends-on-call!” As a traveler, that’s an especially gratifying (and quite helpful) advantage. (Clink!)
  • If I hadn’t studied post-polio treatments in Europe, I would never have encountered a European lover who made me feel like Sophia Loren on a scooter. (Clink!)

 

Now it’s your turn. Lengthen the list and join the party.  It’s our time to celebrate!

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DSCN0918Holiday Blessings!

This essay was recently published in the Fall 2014 issue of Post-Polio Health, Post-Polio Health International’s newsletter.

It might be a great piece to read aloud in your favorite circle of friends who had polio.  After the reading,  any inspired group members could verbalize their own personal “gratitude toast” to inaugurate a cheery exchange.

To be exquisitely festive, do plan to have several bottles of excellent champagne on hand!

Blessed is the season
which engages the whole world
in a conspiracy of love.
             ~ Hamilton Wright Mabie ~

 

Clink!

Sunny

 

From Personal Experience: Give a Holiday Gift That Really Helps

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

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

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

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

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

415y8r1IK8L._SX42rival1. Crock-Pot

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

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

  2. George Foreman Grill

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

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

 

 3. Philips Sonicare Rechargeable Electric Toothbrush

 

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

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

 4e0370d343671dd427c0373fab1d6afa  massage4. Massage

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

 5. E-Reader

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

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

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

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

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

 images sm6. Smartphone

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

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

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

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

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

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

7. YOU

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

That’s YOU–up-close and personal.

Give Generously!


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

Please share them here, quickly.  Before Santa flies.

Ho! Ho! Ho!

 

 

 

 

 

 

 

Whispered Messages From “The Afters”

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“The artist gazes upon a reality and creates his own impression.  

The viewer gazes upon the impression and creates his own reality.”

~Robert Brault

 

Recently, I was introduced to the work of Fran Henke, an Australian artist, writer and  polio survivor who has re-envisioned three famous works of Degas, Modigliani and Rembrandt.  Her series of paintings is called “The Afters.” It is an evocative trio of take-offs prompting the viewer to contemplate… after what? After whom?

For me, The Afters somehow emotes an ethereal spirit that whispers messages about the essence of women in our culture and then more specifically about the evolving social acceptance of women who have a disability. “Beauty is,”  indeed,  “in the eye of the beholder.”  Or is it intrinsic?  What is beauty, anyway?

Look for the braces and wheelchair.  Listen for the whispered messages…

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Left: “Little Dancer Aged Fourteen”; Edgar Degas; 1881. Right: “After Degas’ Little Dancer”; Fran Henke, 2014.

 

Modigliani collage 2

Left: “Seated Woman Weared In Blue Blouse”; Amedeo Modigliani, 1919. Right: “After Modigliani’s Seated Woman”; Fran Henke, 2014.

 

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Left: “A Woman Bathing in a Stream”; Rembrandt, 1654. Right: “After Rembrandt’s Woman Bathing in a Stream/Selfie”; Fran Henke, 2014.

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As a viewer, what is your reflection about these before-then-after works of art?

What might the artist be saying about 21st century Western society’s view of women who have a disability?

 

 

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What whispered messages do you hear from The Afters?

 

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About the Artist

Fran Henke is a busy Australian artist. She had polio in 1943, an isolated case in a small country town. At the time she was Fran Henkequarantined and felt fortunate not to be sent to Melbourne’s big hospital. Living with a post-polio disability, she read a lot as a child, and grew up wanting to become a career writer. The only way to do that and earn a living in those days was to be a journalist, so she did. Fran specialized in reporting about books and the arts. After 50 years, she retired as a journalist in Australia and overseas, and now lives in an industrial port town, on the Mornington Peninsula in South East Victoria. Upon retirement, Fran was able to go to art school and to write books, including artists’ books (see  Smithsonian blog for a definition).

She also decided that since she had strong communication skills, she should use those skills to benefit people who also had polio. During the past 15 years, she has energetically campaigned for meeting the needs of polio survivors in Australia and worldwide.

Fran relates, “this Afters series came out of my belief that art needs to say something. When a U.S. polio survivor mentioned her discomfort at a Modigliani lady’s skirt length… I repainted Modigliani!”   She lengthened the skirt, gave the chair wheels and the lady, leg braces. This year she has continued to revise and provide re-interpretation of beautiful women painted by the great Masters, Degas and Rembrandt.  Ms. Henke has provided us with new, fascinating portraits.

Fran has worked with Redbubble, which is a Melbourne-based online marketplace for print-on-demand products based on user- submitted artwork. She also has her own website with full contact details: www.franhenke.com

Thank you, Fran.

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

 

The holidays are about…

glow

 

“Love for one another.

Forgiveness.

Generosity.

Time.

Music.

Children’s laughter. 

Reminiscing with loved ones.

Remembering those who are alone.

The making of new memories.”  

–Toni Sorenson

 

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

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

But this emotionally toxic breakfast meeting got me thinking.

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

NOBODY needs to be alone during the holidays…

chuy christmas

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

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

 

11 Tips for Hosting

Short Holiday Visits

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

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

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

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

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

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

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

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

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

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

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

linda in black

Linda Wheeler Donahue

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

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

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

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

 

7 Tips for Hosting Visitors Who Will Be 

Staying Several Nights

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

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

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

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

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

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

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

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

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

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

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

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Have yourself a merry little EVERYTHING!

 

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

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

Any additional suggestions for our forlorn breakfast companion?

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

Eve's santa

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

Click here or on the above logo to do your holiday shopping with Santa on Amazon!

“Phoenix Rising” — Lauro S. Halstead, M.D., Shares A Personal Story

The bus took us up above the tree line to an altitude of 7500 feet. This was the last stop for people who wanted to climb Mount mtfujiFuji. Looking up at the snowcapped peak almost a mile above my head, I felt a cold chill of fear. “What am I getting into?” I asked myself. It was the last day of July 1957 and I was about to climb Fuji with Akira, a Japanese friend from college.

“I’m worried about my legs,” I said to Akira. “They feel strong but it’s a long way to the top.” I was in Japan on a travel fellowship to participate in a summer work-study program near Tokyo.
“Don’t worry,” he said. “We’ll go slow and easy, all the way up.” Akira knew about long climbs. As a child growing up in Tokyo during the war, he survived on a starvation diet and witnessed firebombing that destroyed houses in his neighborhood. At college, many mistook his Japanese reserve for indolence but Akira was probably the smartest student in our class and eventually won the top prizes in history and mathematics senior year. Before starting graduate school, he had returned to Japan to visit his family for the first time in four years.
“I don’t think I slept very well,” I told him. “I guess I’m pretty excited.” I may have been excited, but the truth was I was scared. When I woke up that morning, my legs were aching and my forehead was hot. Was I getting sick again? Three years earlier on August 1, 1954, while hitchhiking in Europe, I contracted polio in Madrid. It took six months before I could walk without braces. Although the doctors said I made a good recovery, how did they know how strong I was? I had never faced a challenge like climbing Fuji.
japan mapAkira and I were roommates for two years at Haverford, a small, liberal arts Quaker college outside of Philadelphia. Over the years, we spent a lot of time talking about life in Japan and possibly going there together after graduation.
“I’d like to show you all my favorite places,” he said one day during sophomore year. We were looking at one of his family albums full of grainy black and white photographs. “My parents would love to have you stay with us. You would bring great honor on our house.” It was an invitation that blended traditional Japanese humility and respect in equal measure. I, of course, wanted to take him up on his offer. Traveling to foreign lands seemed to be in my DNA.
“Something I always wanted to do was climb Mount Fuji,” Akira said as he pointed to a picture of the mountain he had taken from the roof of his parents’ home near Tokyo. It was majestic, even serene, and looked impossibly high. “If you think you’re strong enough, we can climb it together.”
At 12,388 feet, Mount Fuji is the tallest mountain and most sacred place in Japan. Many Japanese try to climb it at least once in their lifetime. For those who have never climbed Fuji, it is not as difficult as one might imagine. True, it is over 12,000 feet tall and is snow-capped most of the year, but there are no sheer cliffs or need to rappel. Instead, there is a well-worn, winding footpath that takes you back and forth toward the top. Although experienced climbers easily make it to the top in 6 to 8 hours, novices are told to take frequent breaks and allow at least 12 hours.
So here we were, two novices beginning our slow ascent. By starting at four in the afternoon, our goal was to reach the summit in time for sunrise just after 4:30 a.m.
As we climbed past the 8000 foot marker, I became aware that climbing Mount Fuji was a kind of religious experience. For many Japanese, this was their equivalent of Mecca and at the summit there was a temple to one of the Shinto gods. Looking Hiroshige,_Sugura_street 1around me, I could see hundreds, maybe thousands, of individuals who formed a flowing column of humanity that moved slowly, implacably upward towards the heavens. The vast majority were elderly Japanese, many bent over with age or some infirmity, who were making the pilgrimage of a lifetime: perhaps for spiritual cleansing, perhaps for physical healing. I tried to feel their energy and let myself be carried along by their strength.
Somewhere near 9000 feet, my breathing became more labored and I realized my body was struggling to get more oxygen. During polio in 1954, my respiratory muscles gave out and an artificial ventilator eventually saved my life.
“What. If. Can’t. Breathe?” I gasped. My head was spinning. “Akira. What. To. Do?” There was no answer. He wasn’t next to me anymore. Then I saw his red plaid shirt up ahead in a small group of people looking at something on the ground. A short time later, two men came hurrying down the narrow mountain path carrying a stretcher. On it was a Japanese man, not much older than I, who was pale and lying very still. Someone standing near me whispered, “Heart attack. Happens all the time.” Was this some kind of omen? I bent over, clutching my own chest, gasping for air. The tips of my fingers were tingling.

An elderly Japanese woman saw my distress and said with a gentle smile across empty gums, “No breathe fast.”

It was a simple gesture but reminded me of my stay as an honored guest in Akira’s home a few weeks earlier. Although his parents had been educated in Europe, they observed time honored cultural roles in their personal lives. His mother cooked while kneeling on the floor of a tiny kitchen and only ate after the men were finished. There was a small wooden tub used for baths which was filled once each night. As the honored guest, I was allowed to use it first when the water was still boiling hot. Then it was Akira’s turn followed by his father, his mother, and finally his elderly grandmother.

At 10,000 feet, the path became suddenly steeper and there was a sharp drop in the temperature. Fuji is an inactive volcano but small chunks of brown volcanic rock were everywhere along the path. There were rumors about people slipping on this rock and disappearing over the edge. Akira and I slowed our pace and took rest breaks every 30 or 40 feet. With every step, my legs felt heavier.

“This is tougher than I thought,” I said to Akira. We were in the middle of a thick band of clouds which blocked our vision and sprayed us with a fine mist. I was getting discouraged and my knees hurt.

“You go ahead and I’ll wait for you here.”

“Not a chance. We’re going to make it together.”

He was showing a resiliency that was usually hidden. Until now I hadn’t thought much about his struggles as a foreigner and his rise to the top of our college class. Meanwhile, none of the elderly Japanese around us seemed to notice the steeper climb. Or the colder temperature and the thinning air. Their perseverance gave both of us the courage to push on.

Earlier in the summer, I had learned a lot about Japanese perseverance. “Where’s all the destruction from the war?” I asked Akira as we rode in a taxi around Tokyo on my first day in Japan. ”It’s completely different than I expected. The streets are crowded with cars, people are well-dressed and there are construction cranes everywhere.”

It was true. The country was in the middle of the Japanese miracle. There were scars from the war, to be sure, but they were not readily visible to an outsider’s eye. Japan was making an extraordinary and largely unexpected recovery from the greatest catastrophe in its thousand year history. “Phoenix rising from the ashes,” was the way one newspaper headline put it.

When we reached 10,500 feet, I began to hear a low pitch sound. Was it the wind? No, it was some kind of music. Humming perhaps.fuji

“Do you hear that?” I asked Akira who was close by. I was panting and wasn’t sure he heard me. As I listened more carefully, it sounded like a religious chant.

“They’re Shintoists,” he said. “They’re trying to communicate with their ancestors. They’re also praying for strength to make it safely to the top.” The chanting and relentless determination of the hundreds of pilgrims around us stirred my soul. Truly, this mountain was inhabited by powerful and ancient gods. I took a deep breath.  My legs felt lighter and the cold air refreshed my face.

When we reached 11,000 feet, we had been climbing in the dark for several hours. It was nearly 1 AM and we were finally above the clouds. 1000 feet and three more hours to go if we were to make it to the top by sunrise. In the dark, people were carrying lanterns or flashlights. Looking back down the mountain, I could see this long, winding string of blinking lights, zig zagging back and forth that disappeared into the clouds below. Now we were taking rest breaks every 10 or 15 feet. I looked at Akira who was panting worse than I was.

At 11,500 feet I entered a state of oblivion. Maybe it was the muscle pain or lack of sleep. People told me later I was probably suffering from altitude sickness. All I know is I don’t have any clear memory of what happened. Akira said we just kept at it, one heavy step in front of the other, over and over.

Then, there we were. I was standing on the summit next to the Shinto shrine trying to make a snowball. To the east a faint light was moving up the valley that stretched out far below. Tokyo was at the edge of the horizon. It was hard to believe that this peaceful scene was the site of so much destruction only 12 years before.

“We made it! We made it!” I shouted in a low whisper, exhausted and dazed. “I could never have done it without you.”

We hugged as much for each other’s warmth as for joy.

“What day is it today?” I was having trouble thinking clearly.

“August 1,” he said.

“August 1, 1957,” I said, trying to calculate. Then it hit me. “Today is exactly three years to the day since I got sick with polio.”

With tears of joy, I lifted my eyes to the heavens.

It had been a long journey from Madrid to the top of Mount Fuji.

As I stood there watching the sunrise…

I tried to imagine what other mountains might lie ahead.

sunrise fuji

 


About the Author 

halsteadLauro Halstead, MD, MPH is a physician with over 40 years of experience in rehabilitation medicine. He has a background in internal medicine, international medicine, spinal cord injury, sexuality, disability and the late effects of polio. His practice currently focuses on working with older individuals with physical limitations or disabilities.

Dr. Halstead has a medical degree from the University of Rochester, Rochester, New York and a master of public health degree (MPH) from Harvard University. He was on the full time faculties at the University of Rochester School of Medicine and at Baylor College of Medicine, Houston, Texas for 20 years. For the past 26 years, Dr. Halstead practiced at the MedStar National Rehabilitation Hospital in Washington, DC. Currently, he is a Professor in the Department of Rehabilitation Medicine at the MedStar Georgetown University Medical Center.

Dr. Halstead’s research and publications have contributed to a number of areas including the philosophy of medicine, sexuality, medical education, spinal cord injury and for the last three decades, the late effects of polio and living with polio. He is recognized as an international authority about post-polio syndrome.

Dr. Halstead contracted polio at age 18 and currently uses a motorized scooter for long distances. Before medical school he lived in Rome for a year where he studied Italian literature. Since then he has had a life-long passion for Italian art, culture and language.

Click here to Learn more about Dr. Halstead at his website

 Thank you Dr. Halstead for your many years of

passionate commitment to the post-polio population. 


And …

Happy TX

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This Just In…Prepare Yourself…

This is the 21st century. Is polio still “a curse of God?”  Really?  This article was recently published to raise awareness. It’s important to share.  

Ugh! If indeed everyone in the universe is connected, these women ARE you and me…


Wed for Wombs, Polio Wives Show India Fails Its Weakest

By Ketaki Gokhale – Nov 4, 2014

 

download INDIA

India

From a distance, Kausalya Devi looks like most rural housewives in India — she is squatting on the ground, bent intently over dirty vessels. As you come closer, you see the 20-year-old can’t do much more than crouch: her legs are short, limp appendages, crippled by childhood polio.

The mother of a 2-year-old son, Kausalya can’t move on her own and must be carried by family members. A month ago, she lost her second child, a baby born two months early after local hospitals struggled to give her the medical care she needed.

In rural India, where marriage is often a business transaction involving dowries, young women with disabilities are married off into the poorest families. Women who can’t labor in the fields are expected to bear children and end up in a government health system that is ill-equipped to treat them. Others end up with husbands who demand a steady stream of financial payments or even property from their families.

“Poverty in this part of Uttar Pradesh is a big problem — when these men marry a polio survivor it is because they are too poor to get a normal wife,” said I.S. Tomer, a physician and the mayor of one district in the northern state. “Honestly, if somebody is marrying a girl who is polio-affected, he’s marrying for the sole purpose of having children for his family.”

Most Vulnerable

While India has had no new cases of the polio virus for the last three years due to massive vaccination programs, it is struggling to protect the victims of previous epidemics. The World Bank says the country has as many as 90 million people living with disabilities, including those caused by polio — most of whom endure discrimination, barriers to employment, poverty and violence.

A 2005 study of disabled women in the eastern state of Orissa found that a quarter of women with mental disabilities and 13 percent with visual, hearing and physical disabilities — such as those caused by polio — reported having been raped.ibm3oihOWvgw 1

The share of disabled children who are out of school is around five and a half times the general rate, according to the World Bank report from 2009.

There are no reliable statistics on how many people in India live today with polio. The number could be large because the country once accounted for more than half the world’s infections and had  150,000 cases as recently as 1985.

Global Emergency
The polio virus, an infectious disease that is spread through contact with feces or droplets from a sneeze, attacks the nervous system and can cause paralysis within hours. It kills as many as 10 percent of its victims.

 

india 1Once almost driven to the brink of eradication, the disease is rearing its head again in the conflict zones of Pakistan, Cameroon and Syria, and the World Health Organization earlier this year declared it a global health emergency.

Nearly half the respondents in a 2005 AC Nielsen and World Bank study that surveyed more than 1,400 households in the Indian states of Uttar Pradesh and Tamil Nadu believed the disease was “a curse of God.” Almost half believed an adjustment in dowry was necessary if a disabled person married a non-disabled spouse. Women are among the worst hit.

“Polio-affected women mostly are married to people on their second marriages, or very poor families,” said Surabhi Shukla, a district coordinator for a United Nations Children’s Fund program that vaccinates children in Uttar Pradesh.

Every Girl’s Dream

In India, where the rich spend millions on lavish weddings and Bollywood films are centered on matrimony, having a spouse can translate into greater social acceptance and security.

“Every Indian girl dreams of getting married,” said Sandhya Jha, director of Shikhar Prashikshan Sansthan, a nonprofit that works in Kausalya’s district. “You have to look at the other side of this. For a girl who has had polio, the fact that somebody would accept her, that makes her very happy.”

 

India’s many online marriage sites allow users to search for physically handicapped partners, giving the disabled a shot at marriage. A nonprofit in the western Indian city of Udaipur conducts free “mass weddings” for young women and men with disabilities — mainly from polio. The aim of these weddings is to find partners for low-income people with disabilities, who ordinarily would be marginalized in Indian society.

“Marriage means a lot for a girl — even a girl who is not disabled,” said Ravish Kavdia, a spokesman for the group, Narayan Seva Sansthan. “In rural villages, after a certain age, it’s hard for the family as well as the concerned person to live in the society freely if they are not married.”

Polio Outbreak

For Manisha Wagh, getting married at 19 to an unemployed cable repairman was anything but a silver bullet.

She was one of seven children who contracted polio in the densely packed tenement in northern  Mumbai where she grew up. One night in 1984, 3-year-old Wagh came down with a high fever and by the next day, paralysis had set in.

Although she was one of the lucky ones who didn’t lose her mobility, the virus left her permanently disabled — she keeps her underdeveloped left leg pressed with her hand as she walks to keep it from buckling under her.

“He was introduced to us by a relative,” she said of her former husband. He wasn’t disabled, and her mother agreed to the match.iwsuR.GJkKzc 1

New Rickshaw

It became clear soon that the proposal came with strings attached. For marrying a disabled girl, he expected to be compensated, Wagh said. He quit his job three months after their wedding, and asked Wagh’s mother to buy him an 180,000 rupee ($2,900) rickshaw. She refused. Financial desperation, worsened by the addition of a baby, made Wagh look for work. She found a job in data entry at a chemical company that paid 12,000 rupees a month and eventually divorced her husband. Her mother let her come home. “She feels bad because she married my sisters to good people, but made a wrong decision in my case,” Wagh said. Now she is remarried to a man she grew up with, with whom she had a second baby girl a month ago. She knows she’s luckier than many women in India — for having a supportive mother, for being educated up to the 12th grade, for having job prospects, and, finally, for a second shot at marriage.

She was also lucky that her new husband, a rickshaw driver in Mumbai, could afford the 45,000 rupees it cost to deliver her second daughter by cesarean section at a reputable private hospital. She smiles as she talks about her new husband, Lalit. “He sees me as a normal person, not as somebody to get something out of.”

Child Birth

In Uttar Pradesh, the combination of poverty, disability and ill-equipped clinics had heart-breaking consequences for Kausalya. While female survivors of polio can have normal pregnancies and bear healthy children, they require more care during pregnancy and child birth. A 2007 study by researchers in Norway found they had more complications such as preeclampsia — a potentially fatal pregnancy condition characterized by high blood pressure, kidney damage and renal disease. They were three times as likely to have deliveries complicated by obstruction, and had higher rates of C-sections and stillbirths.

Decades after an infection, victims can develop post-polio syndrome, where muscles start further weakening. Polio survivors with paralyzed lower limbs in rural India or in urban slums often crawl or use their arms to drag themselves along the ground, without walking aids. Many young boys end up begging for money.

 

Blood Storage

The community health center Kausalya went to when she began feeling shooting pain in her womb, two months before her due date, didn’t have blood storage, Bloomberg News found on a visit there. It also didn’t have the ability to perform C-sections. R.P. Gupta, chief medical officer of Mirzapur district, didn’t immediately comment.

 

Kausalya was next referred to a government-run district hospital. There she waited for a day and was never seen by a doctor. Her pain continued, and her designated village health-care worker recommended she be taken to a private hospital about 40 kilometers (25 miles) away. There, Kausalya gave birth to a second baby boy by C-section. He lived for about 10 minutes.

India’s Persons with Disabilities Act — its main law for people with disabilities including those caused by polio — focuses mainly on prevention work such as vaccination, the World Bank says, and doesn’t make commitments for treatment and rehabilitation.

Boy Child

On a sultry afternoon in Kausalya’s village of Indiranagar, her father-in-law placed her on a cot so she could talk at eye level. Kausalya is a member of the Kol tribal community of northern India, which once relied on the forest for income — selling leaves and timber. In this district, members are now mostly landless agricultural laborers, and the family lives in a one-room mud home thatched with shingles and twigs.

Kausalya said she was feeling better, but her eyes were full of tears and face furrowed with worry. Her husband sat wordlessly, never addressing his wife. Her mother-in-law, Jashodhara Devi, was crying and angry that the family had lost a male child. “The baby boy is dead,” she said, again and again. “They killed our boy.”


To contact the reporter on this story: Ketaki Gokhale in Mumbai at kgokhale@bloomberg.net

To contact the editors responsible for this story: Anjali Cordeiro at acordeiro2@bloomberg.net; Brian Bremner at bbremner@bloomberg.net Crayton Harrison

To view this story online go to Women in India    ®2014 BLOOMBERG L.P. ALL RIGHTS RESERVED.


Calling upon our leaders…

images candle 1Judy Heumann, powerful international disability rights advocate, what can you tell us?

Margaret Nosek,  deeply respected national researcher on women with disabilities,  what are your thoughts on this situation?

Oprah, talk to us!

Deepak Chopra, what’s going on in India?

What would Eleanor Roosevelt have said?

Priests, Pastors, Rabbis, Elders will you please shine a light on this inhumanity?

Must having a post-polio disability still be “a curse of God?” Ugh!

What can WE do?

What do you think Post-Polio Health International could do to help?