Tag Archives: post-polio disability

A Cautionary Tale about Post-Polio Shoulder Surgery: One Story, Three Perspectives

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By Sunny Roller, M.A. and Frederick M. Maynard, M.D.

One must be very careful about choosing to have orthopedic shoulder surgery, especially if one is a polio survivor with a complicated disability. It’s not because of the surgery itself. It’s the complexity of the rehabilitation process and the uncertainty of functional outcomes that make it perilous.

A few months ago, we met with longtime friend, Liina Paasuke, over a lingering cup of coffee for a heart-to-heart conversation about her recent ordeal with shoulder surgery. Liina graciously told us her story that day. We asked her questions, listened, and took notes. Then the three of us shared ideas about how to proceed.

Over a casual cup of coffee, Liina Paasuke and Frederick M. Maynard, M.D. connect about the issues.

Since that empathetic and thoughtful exchange, we have individually continued to reflect upon Liina’s difficult experience and have each come to evaluate the situation from our varied perspectives as the post-polio:

  • medical specialist
  • surgical patient and
  • friend/consumer

We first present biographical background information about Liina, followed by the account of her surgical experience. Dr. Frederick Maynard then reflects upon what happened from his perspective as a post-polio physician. He offers important medical information and insights.  Liina then provides a personal update as she continues her rehabilitation process. Finally, Sunny Roller reflects upon the whole experience as a friend with a similar post-polio disability who, like others, may someday face the same decision–whether to have such surgery—or not.

Due to little previous discussion of, or experience with this matter, a decision about having shoulder replacement surgery can suddenly confront and confuse people who are growing older with polio or another neuromuscular disability.  It is our hope that by presenting Liina’s account and our individual perspectives of it, readers–both consumers and professionals– will more fully understand the issues and benefits of the choice to have, or to prescribe, shoulder replacement surgery (also known as Total Shoulder Arthroplasty or TSA).

Liina’s Story

Liina was born in 1948 in a German displaced persons’ camp. She developed paralytic polio at age 17 months as she and her Estonian parents were arriving in Michigan after an immigration journey to the US. She spent most of the next four years in a Grand Rapids, Michigan hospital and underwent several surgical procedures on her severely paralyzed legs. By age six, when she began mainstream schooling, she was able to walk only by using bilateral long leg braces, a corset and bilateral forearm crutches.

After high school graduation, she studied at the University of Michigan and earned a Master’s degree in Guidance & Counseling. She had a 36-year career with the Michigan Department of Vocational Rehabilitation at the University of Michigan, mostly providing counseling for people with physical disabilities. During her college and early employment years, Liina was entirely independent in all personal and advanced activities of daily living (ADLs). She walked as far as she needed or wanted to go using her devices with minimal difficulty. She drove a regular car with hand controls. In 1979, she purchased a 3-bedroom home that she still lives in today.

Although Liina’s general health remained excellent, by the early 1980s she found it increasingly difficult to walk long distances and experienced symptoms of Carpal Tunnel Syndrome. In 1984, she obtained her first motorized scooter, had a ramp built for entry into her home and purchased a van with a rear swing-arm lift for scooter transport.

Over the next 20 years until her retirement in 2006, she very slowly gained about 25 pounds and gradually decreased the amount of time and distance that she walked due to increased effort and greater fatigue. By 2006, she was essentially ambulatory inside her home only. She began dragging her right foot during swing and could not negotiate a single step. By 2010 due to slowly declining strength and endurance, she could no longer complete bathing and toileting in a regular bathroom. Voluntarily, her longtime church’s

The First Congregational Church of Ann Arbor

congregation immediately raised money to partner with Liina and a home improvement contractor.  Together, after Liina tapped into personal funds and the church garnered additional financial support, volunteers got to work to complete the necessary architectural modifications.  Within a few months, they had fully redesigned and remodeled Liina’s home bathroom, bedroom and kitchen for fulltime scooter use. This collaboration with an exemplary church enabled her to remain independent in self-care and homemaking, primarily from her seated position.

Beginning gradually in 2012, she developed increasing right shoulder pain, especially with overhead elevation and turning. After her physiatrist diagnosed her with rotator cuff tendonitis, she had some short-term benefit from several bouts of Physical Therapy (PT) over the next three years. Nevertheless, she lost Range of Motion (ROM) and strength in the right shoulder. Her pain levels rose and severe pain was more frequent.

Her Choice to Have Surgery

By late 2015, Liina decided to investigate surgical options for her right shoulder problems because of concerns that further worsening would jeopardize her ability to continue to live independently. Her primary goals were to maintain the ability to walk a little in her home, to stand up after toileting and to  reach higher objects in her home. Her secondary goals were to decrease pain and increase ROM in the right shoulder.

She was referred to an orthopedic surgeon who specialized in upper limb joint replacements and who performed “Reverse Total Shoulder Arthroplasty”(rTSA). In this procedure, the head of the humerus is removed and replaced by a shallow cup that articulates with a rounded ball (head) which is implanted firmly into the glenoid fossa of the scapular bone. This newer procedure is thought to restore better motion and strength in people whose shoulder rotator cuff muscles or tendons are torn or completely frayed from degeneration and cannot be repaired.

The surgeon led her to believe that the use of her arm would be as good as before. However, she was unable to have him answer specific questions regarding the eventual post-operative function of the arm for routine weight bearing which was critical for standing up and for transfers. The doctor said that the right shoulder would need to remain immobilized and bound to her chest for 6 weeks and thereafter she could gradually do anything she wanted to do and was capable of doing with that shoulder.

Despite reservations, she decided to proceed with the surgery. To prepare, she arranged to stay in a ‘subacute rehabilitation bed’ at a rehabilitation center with a good reputation in her community. She also quickly purchased an adapted minivan with a side ramp that would allow seated entry using her scooter. The r-TSA was done on April 13, 2016 and three days later, she was discharged to the rehab center.

Rehabilitation after Surgery

She was dependent in all ADLs while her right arm was immobilized. She received therapy services and gained some modified independence in self-care using her non-dominant left upper arm and shoulder.

After four weeks, facility managers reported that they would very soon discharge her to go home alone because there were no further goals to meet Medicare criteria for her continued stay until she could use the right arm again. She knew she would be unable to function at home alone. Appealing this decision based on her pre-existing condition of post-polio paraplegia was unsuccessful, but the facility did eventually allow her to stay longer after a follow-up visit with her surgeon. He gave her permission to begin some controlled motion exercises with the shoulder and to use the right upper limb below the elbow for ADLs.

After a nine-week stay, the rehab facility discharged Liina to go home. She could now perform basic ADLs from her scooter with great difficulty– involving much time, effort and ingenuity. She received home therapy services for three months and increased the strength and ROM of the right shoulder.  By five months post-surgery she was able do all of her basic self-care independently with only mild to moderate additional effort and modifications than before surgery.  She still could not stand up again after normal seated bathroom toileting, which limited her community re-entry.

Her right shoulder ROM was very good and she had no significant shoulder pain. When she began outpatient PT, her therapist noted surprising strength deficiencies in her shoulder’s scapular stabilizing muscles, which he determined had not been specifically targeted for strengthening during her home PT exercises. He began targeted strengthening exercises for the right scapular stabilizing muscles and advanced her generalized upper body-strengthening program in order to assist her reach the goals of standing independently after seated toileting and for reaching high objects from standing.

At seven months post-surgery, she felt ambivalent about whether the surgery had been “worth it”, but she was more hopeful about the chances of reaching her primary goals. She remained quite taken aback by how long her recovery was taking.

Looking back, she felt that her surgeon had misled, even betrayed her, with false expectations, conflicting messages and unresponsive communication. Before the surgery, he said that recovery would be easy. She soon recognized his lack of knowledge concerning the polio survivor’s potential challenges post-surgery. Since early on, he had ignored her questions. Her frustration grew when he would not return her emails and phone calls. He stated he had successfully operated on two other post-polio patients, but would not provide clearance for her to talk with them about their experiences. She continued to have some negative feelings about both his insensitivity and what seemed to be a disregard for her disability.  At this point in her recovery, she worried more than ever about staying financially and physically independent.

Frederick M. Maynard, M.D.—The Post-Polio Physician’s Perspective 

Identification of Surgical Goals

One important lesson from Liina’s story is how essential it is for people with chronic lower limb motor disabilities to identify their goals for having any shoulder surgery. This is particularly true for any functional goals that have been lost and are hoped to be regained, or for functional goals critical for independence that are in jeopardy of being lost. While pain reduction and improved ROM may be desired, and are considered likely to be obtained from a successful surgical procedure, the achievement of any eventual post-operative goals dependent on higher levels of upper limb strength are harder to predict. Due to many unpredictable intervening variables, their achievement may require prolonged challenging effort by both professionals and patient. Honest and frank discussion about this reality pre-operatively between surgeon and patient can mediate any disappointing results.

Accepting the Lack of Medical Knowledge

A second lesson from Liina’s story is greater awareness of how little the medical community knows or understands about the unique needs of people with chronic lower limb motor disabilities. This case in particular elucidates the current paucity of medical knowledge about successful post-operative restoration of weight-bearing function with the shoulders and upper limbs after a new reconstructive orthopedic procedure on the shoulder joint. Given the impressive results of TSAs for reducing pain and restoring functional ROM for otherwise able-bodied people, these procedures are likely to be offered to and considered by people with chronic lower limb motor disabilities more frequently in the next 10 years. This is a predictable result of first, the high frequency of shoulder pain problems observed among people with Spinal Cord Injury-related paraplegia (>80% incidence after 20 years post-injury.  Second, it is inevitable that there will be greater need for TSA in the burgeoning older age cohort of people living with conditions such as post-polio, spina bifida, cerebral palsy, muscular dystrophy and other neuromuscular conditions who routinely use their upper limbs to bear full body weight. A medical literature review identified only two reports that addressed outcomes of TSA among a few people with paraplegia (including two patients with polio).  [1]  [2]   Medical and surgical complications were numerous and functional outcomes beyond pain reduction and ROM were not well described.   Just as hip and knee joint replacement surgery has become commonplace in the USA for treating older age-related “wearing out” dysfunction of these  joints, shoulder joint replacement is becoming more widely and readily available. Many efforts at new and improved designs of utilized hardware and for surgical tactics are likely; but specific study, or even note, of the special needs, problems or complications of people with chronic lower limb disabilities having these procedures seems unlikely.

Current Recommendations

Not enough is known about post-surgical functional outcomes in people who regularly need to use both shoulders to support their full body weight. Consequently, for the present, I recommend great caution when considering TSA or rTSA. Clear goal identification for having any procedure, excellent communication between patient and surgeon about goals and special needs, and consideration of second opinions are also recommended. I am also promoting to my surgical and rehabilitation colleagues further investigation of strength and functional outcomes achieved after these procedures among people who rely on body weight bearing shoulder function.

Liina Paasuke—The Post-Polio Surgical Patient’s Perspective

Post-Surgery Shockers

Now, nine months after her surgery, Liina reports that she is slowly regaining her strength and function, but is still not back to her pre-surgery capabilities. Astonished by the potent consequence of short-term muscle disuse for polio survivors, she has been dismayed by several post-surgery shockers. First, her total upper body strength is diminished, on both the right and the left sides. Second, crutch walking is now grueling and, right after the operation, she could not even move her right leg to take a step, as she was used to doing before the surgery.

Third, Liina is functionally able to do a greater number of activities than she could right after her surgery, but she has also needed a greater number of environmental supports, which have been expensive. She purchased an adapted minivan and paid a contractor to construct a new door built into the sidewall of her one-car garage for entering and exiting her car, using the side ramp. She also bought an electric bed that raises, lowers, and has bedrails. She had more functional grab bars installed in her bathroom and bought a seat height extender for her scooter. She has newly hired a physical therapy assistant who helps her at home with exercises and some tasks around the house at $15.00/hour, which is a reasonable rate. Liina discloses that all of these new adaptations at home have “eaten away at my confidence for any future travel that would involve staying overnight in hotels, condos and friends’ homes.”

Lessons Learned

Liina shares that she has learned firsthand how debilitated a polio survivor can become after just two months of inactivity. She was led to believe she would have a short recovery time. But even nine months after surgery, an all-encompassing sense of exhaustion when doing previously-normal activities has been overwhelming.  As she now works to train her right shoulder muscles to compensate and operate in different ways than before, she cautions post-polio consumers to “carefully weigh any surgeon’s expectation against reality”.

She also recommends that the post-polio patient learn everything possible about Medicare payment guidelines. Scared that she would either be forced to go home alone before she could function, or have to pay out of pocket the daily cost of her nursing home rehab stay, she thanks Post-Polio Health International (PHI) for sending information about Medicare’s rehabilitation improvement standards.  See article titled, “Judge Orders Medicare Agency to Comply with Settlement in ‘Improvement Standard’ Case, Provide More Education” at http://www.medicareadvocacy.org/medicare-info/improvement-standard/

After sharing this article with the Rehab Center, they got around it somehow, but she felt that at least it was self-empowering to wave it at them. She also warns not to trust the knowledge that an inexperienced social worker may have. Hers was not helpful at all. She also had a home physical therapist early on who was not helpful due to lack of post-polio knowledge. Often left to advocate for herself from her weakened position, Liina confides, “It’s tough to fight when you’re down”. So, the advice is: prepare. Find a strong, enduring personal advocate before surgery and go into surgery armed with a list of resources such as senior centers, The Area Agency on Aging, Medicare, other insurance company numbers, PHI, local polio networks and support groups.

Liina has been home for seven months now and is doing regular physical therapy at home and at a special supervised physical therapy gym program. She has re-joined WeightWatchers to lose a little weight. She reports that the pain in her right shoulder is indeed gone and she moves it much more easily. She also reports that this experience has certainly been enlightening, but she would definitely think twice about having the same surgery in her left shoulder, which her surgeon recommended, if it further deteriorated.  She is still not back to her desired level of functioning yet but is hopeful about making new gains. Liina says her story of surgery is definitely still a journey in progress. Maybe she’ll know if it was worth it in two years…or so.

Sunny Roller—The Post-Polio Friend and Consumer’s Perspective

As a polio survivor who grew up walking with crutches and braces and now at the age of 69 uses a scooter full time, I am very grateful to Liina for having the courage to reveal her private story to the rest of us. Even from the sidelines, hers has been a fear-provoking experience for me to witness and imagine. In the past, I had had firsthand experiences with broken legs that had taken nine months to heal and involved extensive rehab—and that was when I was much younger.  What would happen with major surgery at this stage in life? At times, I was so worried for her. But I have also been impressed with her hutzpah. From my perspective, she took a huge medical risk. She chose to venture down the proverbial “road less traveled” not knowing what to expect; and it has indeed been a somewhat darkened and physically dangerous forest filled with ignorance and falsehoods to battle. But Liina is steadfast. She has been resolute about getting through this ordeal.  She has been tapping in to her ingenuity and sense of hope all along the way, and is closer to her goal of continued independence with a shoulder that doesn’t hurt.

My Take-Away Lessons

Liina has shared her arduous ordeal so we may better prepare for any future major surgery that might be prescribed for us. After being close enough to witness and empathize with Liina’s experience, here are my take-away lessons:

  • We all have much more to learn about this type of surgery for polio survivors
  • If surgery is prescribed, always get a second or third opinion from a non-surgeon post-polio specialist
  • If you have a bad feeling about the surgeon and his office staff, trust it. Find someone else
  • Research all the alternatives to having this type of surgery. Consider thoroughly the future impact of any functional risks if you decide to opt out of this surgery
  • Know that muscle disuse in a polio survivor zaps previously accustomed strength and the ability to function and this is inevitable in any immobilized post-operative limb. Assume that the post-surgical rehabilitation will take much, much longer than anyone expects; then plan accordingly
  • Prepare thoroughly before the surgery. This includes:
    • Making sure the surgeon’s team is informed about the proper cautions for anesthesia and recommended surgical recovery room procedures for polio survivors
    • Finding, even touring and interviewing at the best place for your rehabilitation based on location, skill, reputation, knowledge of polio survivor issues
    • Recruiting a loyal personal/professional patient advocate who will persevere and stand up for you through the whole process–from start to the point of fullest recovery
    • Tapping into your network of family and friends in advance for possible pledges of assistance; asking them to help mainly with what they are good at and like to do (“it takes a village!”)
    • Gathering all information possible about resources that might be needed
    • Talking to occupational therapists in advance about home rehabilitation, care and recovery needs including possible home modifications
    • Talking with physical therapists about alternate ways to transfer and move about during post-surgery rehabilitation
    • Identifying post-polio specialists who will agree to consult with health care professionals about specific post-polio issues. PHI is a great resource for this information
    • As if going away on a trip, preparing your home indoors and out for your potentially lengthy absence
  • After surgery and during the rehabilitation process, know that you and your advocate will need to teach most of your helping professionals about how best to care for you on a daily, even hourly basis
  • Understand that recovery will not be easy, but it might be worth it. Weigh the pros and cons judiciously.

This is indeed a cautionary tale… 

 

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[1] Hattrup SJ,  Cofield RH. Shoulder arthroplasty in the paraplegic patient. J Shoulder Elbow Surg 2010; 19 : 433-438.

[2]  Garreau De Loubresse C, Norton MR, Piriou P, Walch G. Replacement arthroplasty in the weight-bearing shoulder of paraplegic patients. J Shoulder Elbow Surg 2004; 13 : 369-372.

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The condensed version of this article was just published in the Spring 2017 edition of Post-Polio Health, the quarterly newsletter from Post-Polio Health International (Volume 33, Number 2).

P.S.

Click here to help a polio survivor in Atlanta who needs all of our support!

 

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Way Back When: The Lost Anthology–Chapter Three

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

 

The Best Wheels

There were once two little girls

who loved to play with wheels.

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“Playing House” by Jim Daly

They pushed their dolls in strollers

before and after meals.

Roller skates, a bike, and a trike

all painted red and white

Kept them moving all around

from morning until night.

They pulled their new wooden wagon

all over in the sun,

and shopping carts in the stores

made shopping much more fun!

But Mama’s yellow wheelchair

had the best wheels of all,

To push and ride with Mama

all over the mall!

___________________________________

People

Most people stand up straight and tall,

can walk and run with no help at all.

But some use canes or crutches, too,

to walk around like others do.

Some need braces or special shoes

for walking or running or whatever they choose.

And some people can just sit in a chair

And wheel around from here to there.

But remember that we’re all people, too,

We all like to play and go to the zoo.

We all love to laugh and sing and talk

whether we have to wheel or walk.

Brian Penguins 2vv

“Peckish Penquins” by John Dyer

______________________________________________

Later, when up against the late effects of polio, her positive, youthful spirit emerged as she reflected on what might come next …

Polio Survivors–Movement

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

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

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

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

paintings trees childhood children_www.wall321.com_8 bb

Unknown Artist

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

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About the Author

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

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

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

Thank you, Mary Ellen.

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

 

Still Searching…

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

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

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

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

Thank you!

Sunny

 Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Norene Senkbeil

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

 

Are you somewhere out there?

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

 

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Are You Listening?

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

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

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

How do we feel when someone is listening intently?

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

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

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

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

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

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

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

Listening is caring.

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

                                                                         ~ Margaret J. Wheatley

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

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

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

 

listening

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

Any comments?  Ever felt invisible?

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

You matter.

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

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Working on Wisdom

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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…

http://youtu.be/JKKlqMs19tU

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!

Wise elder collage

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

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“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!

cat 3 sea

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!

cat sea

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!

seagull

 

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

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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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Let’s Clink Our Champagne Glasses!

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hip hip

“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

41-T6zwOwNLgrill

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

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

 

 3. Philips Sonicare Rechargeable Electric Toothbrush

 

5192e89PJjL._SL1500_tooth

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.

 

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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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Loneliness Is A Choice

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 Happy Halloween!

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

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

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

Joyce shines a very bright light on this issue.

Sunny

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

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

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

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

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

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

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

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

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

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

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

Joyce Ann Tepley

Author of…

Click on this picture to find it.

 

info@thriverlivingcommunity.com

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

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

–Sunny

Read Dale Carnegie’s classic book. Click here!

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

Do you think loneliness could actually be a choice?

Let’s chat.

You first…

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