This will be the 11th and final Post-Polio Wellness Retreat at Bay Cliff Health Camp.
Attending this retreat feels like you’re living in a happy postcard!
It’s a wonderful time away.
Lake Superior is calling you…
Hope you will think about signing up for this post-pandemic opportunity to restore and rejuvenate.
Sunny
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:
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:
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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).
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July Fourth. It’s Independence Day weekend in America; a time to celebrate that we live in the “land of the free and the home of the brave.” And this weekend, the national celebration also makes me think about my own sense of independence.
As a polio survivor for 63 years who has needed crutches, leg braces, and now a wheelchair and a scooter to get around, I was taught searing lessons about independence since the age of four. As children of the epidemics, we were immersed, even indoctrinated, with the goals of becoming fiercely independent as we went through our initial rehabilitation from acute polio. “Do it yourself! You fell down? Well, figure out how to get up on your own! It’s a cold, cruel world out there! You will always have to prove yourself to others,” were words I often heard from my parents and therapists. And they worked for me for a long time.
For fourteen-plus years, my 1950’s rehabilitation professionals convinced my family and me that I, as a young person who had a disability, was not sick, or defective. Neither was I destined to become a deviant object of charity. In fact, my mother always told me that I could do anything anybody else could do–just a bit differently. Our Wise Elders, the polio survivors in my national report, said they were told the same thing. One woman said she had a need to think independently from the time she was a young woman. She described how she traveled alone around the country and made other decisions that seemed imprudent to her non-disabled social group. Our stories of super achievement are numerous. But as we learned self-determination and self-respect, we were also taught not to be a burden on others.
WOW
Now that’s a loaded statement. One that needs unraveling–fast! A burden? What’s that? What does this concept called independence really mean to us today? Is it the flip side of dependence? If independent means not being a burden on people, does that mean we should have less self-respect as we demurely become a dependent thorn in the side of others when we do reach out for help? Excess baggage? An affliction to them? Should we feel guilty? Defective? Unworthy? OMG: independence versus dependence. Let the unraveling begin with a new thought…
It’s the Fourth of July in America. Our greatest document, other than the Constitution, is the Declaration of Independence. For people who are growing older with the late effects of polio or simply growing older with the late effects of life, I say we need to draw up a more evolved document: The Declaration of Interdependence!
Not independence. Not dependence. But interdependence: “the quality of being mutually reliant on each other.”
It makes total sense, if we can shake our old ways of thinking. Under the guidance of this new declaration, we can begin to move from needing to fly solo so as not to bother others and prove ourselves worthy, into a new and lovely blessed state of healthy exchange. “I ask you for new kinds of help and I give you the help you need that I am capable of giving.” It becomes a gracious and reciprocal experience that none of us will want to miss out on.
Trying to be that old kind of independent can be not only exhausting, but darn lonely. Working with a friend to plan a class reunion or a church event not only takes the load off me, but is a lot more fun. Who wants to do stuff alone all the time? That’s too independent! Trying to be strong and self-reliant can also be dangerous. Now while painting the fence or planting a garden, I could easily fall down, and then pop a bicep trying to push myself up from the ground. I say find a twenty-year old to do it. Then give him some of your best home baked cookies, some money and your full attention as he shares his life plans and interests. We have both gained from the experience. My friends and I trade favors. We drive each other to the airport and to our colonoscopies. I always have to drive my adapted car wherever we go, but my friends often chip in for gas. I listen intently to what my friends need to share with somebody and my buddies pay for dinner or buy me a device I can’t afford right now. It’s becoming easier for me to ask strangers for help when I need it too. We have always needed others and they have needed us. It just starts to look different as we age. As the poet says, “no man is an island.”
Who needs to do stuff alone all the time? (Photo: Bay Cliff wildflower taken by Paula Lemieux)
If we need more, we need to ask for more. No guilt. We still have much to contribute now; maybe even more, but in different arenas. We don’t need to prove ourselves in the mainstream workplace and keep up with our non-disabled competitors. We can make new disability-related adaptations and be content with who we are really becoming, and what we need to do to live well during our retirement years.
Growing older with greater disability can offer us a fresh sense of not only comfort, but also liberation. I love having a flexible schedule that I can coordinate with my energy levels. It’s great to have time to Skype or play Skip-Bo with kids, do my scrapbooking and card making, walk and roll with my friends along the river’s edge, and contribute to my special social causes. Another unexpected thought–because of feedback I’ve received, I think I have somehow become more beautiful in certain ways as I’ve aged. And that’s in spite of new fat, wrinkles and deformity. Maybe it has to do with personal essence. Not sure, but I think that phenomenon is possible for each of us. We can mysteriously become more attractive. In many important ways, life can be better in old age than it ever was in youth. Especially when we each figure out how to adopt our own personal Declaration of Interdependence.
So stay tuned! Next time we’ll focus on the sacred exchange of giving and receiving.
Until then, I’m interdependently yours,
Sunny
P.S. Weight loss update: I have shed nine pounds since May 13th. Much more to go. Onward!
—Many thanks to Sue Rasmussen for her editorial assistance with this post!—
The following piece was sent to us by the late Ernie Anderegg from Tuscon, Arizona. He wanted it to be published in the post-polio anthology back in the late 1980s. This poem is a tough one to read because it so concretely describes the anguish and adversity that polio brought to so many newly-paralyzed children and their heartbroken families. The experience was absolutely devastating on so many levels and can bring back mournful images and memories that are still buried deep within.
But wait! Out of the desolation, Ernie expresses his pride in being a polio survivor and reminds us that the powerful spirit of love and our enthusiasm for living life prevails …
Who are these polio Survivors?
Infants, only days or weeks into this precious life;
Lifeless and aching in paralytic strife.
Toddlers, removed from their bonding with kin;
to a world of strangers and loneliness therein.
School-age tots, healthy, vital and well;
with an untimely sentencing to a strange form of Hell.
Young adults, men and women alike;
not quite able to evade this phantom’s strike.
With febrile delusion and limbs that would fail;
Like rag dolls–languid, flaccid and frail.
Parents of whom were often alerted,
“Go home to your family, death cannot be averted.”
But we heard not the dirge, we made no departure;
and we all cheated death to pursue life’s adventure. 
Now challenged by life to rebuild and maintain;
the Polio Survivor will gain and regain.
With lost weeks and years in sterile abandonment,
maturing, enduring this foreign environment.
Spanning the spectrum from newborn past twenty;
Their good lives disrupted–tears shed aplenty.
With racking pain in uphill progression,
who’d ever believe we would relive regression?
But through this all we bore the test;
and still proclaim we are the best.
And drawing from our days on trial,
When we all pushed the extra mile.
The common thread running through our lives
was…
About the Author
Polio survivor, Ernest J. Anderegg, Jr., age 68, “ended his earthly journey at home on March 29, 2015. Born on December 1, 1946 in Jersey City, NJ to parents Ernest and Lillian Anderegg and survived by first wife, Beverly Anderegg; two children, Darrin and Renee; three grandchildren and two brothers, Warren and Gregory Anderegg. As a polio survivor he became a strong advocate for the disabled community and instrumental in establishing the polio EPIC group. His presence will be missed and treasured by family and many beloved friends. He was admired for his wit, appreciation of the value and comfort of friendship, and particularly for his strength and equanimity in the face of chronic pain. He was a profound poet and writer who earned the title of “Distinguished Poet” on Poetry.com.
Of his life he wrote, ” (I am a) polio survivor of the 40’s epidemic (spino-bulbar) who has spent a lifetime ‘trying to pass for normal’ (a term used by survivors). In my old age there has been a number of concessions, physical and psychological, that directed me to writing to express and vent. Watching the natural course of things in an analytical way, I am able to draw from life experience to leave my thoughts, strengths, personal spirituality for family & friends to cipher after the fact.”
Ernie was a founding member of the flourishing post-polio support group, Polio Epic, in Tuscon, Arizona. Current group president, Micki Minner, enthusiastically shared with me that Polio Epic is a dynamic, ever-enlarging support group with strong programs and powerful outreach. It attracts folks from all over the state to their regular meetings. To learn more, check out their website here… 
The Search for Anthology Authors Continues…
Almost 30 years ago (1987), friends, Barbara Pike, Charlene Bozarth, and I sent out a nationwide request to polio survivors who might want to have their writings published in an anthology. Manuscripts came in, but life took over, and we were never able to create and publish the collection, as we had hoped. When I lost track of Barbara in Ohio, and Charlene, who left Michigan for New Mexico, I protectively stored the writings for resurrection at a later date.
Well, this year is that later date! I recently rediscovered them in my files, dusted them off, and now plan to take the liberty of publishing them by way of this blog. Some are essays. Some are poems. They are heartfelt, intimate and describe living with polio in earlier times. We can still resonate with their feelings and messages.
Here is a list of the missing anthology authors whom I would like to contact for permission to publish their work, now, so many years later. Since the publishing of chapter one, we have found three more authors, but have many yet to find.
If you are one, or know of one, please contact me at sunnyrollerblog@gmail.com.
Thank you!
Sunny
Floy Schoenfelder
Lee Whipple
William Wild
Agnes Fennewald
Charlotte Snitzer
Ann Bradley
Toni Keffeler
Sofia Baltodano
Bruce Berman
Roberta Dillion Williams
Becky Lee Vance
Jean Hamm
Norene Senkbeil
Ann Goodhall
Ginger Sage
Shirley Hile Powell
Elizabeth Reeves
Doris Vanden Boogard
Donna L. Mattinson
Marie Galda
Alan M. Oberdick
Emma Blosser Hartzler
R. N. Hackney
Robert C. Huse
Where can you be?
P.S. Quick report on my weight loss program: since May 13th I have lost 4.5 pounds. Onward and upward!
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help me a little too, providing a small commission. There would be absolutely no difference for you, but there would be a small boost for me. We would both end up winners that day! Thanks for considering this win-win option.
The links below and throughout this blog are affiliate links. This means, at no additional cost to you, I may get a small commission if you stay on the link and make a purchase anywhere on that website. Thanks for your support in this way!
“Hip, Hip, Hurrah!” 1888, oil on canvas by Norwegian-Danish painter Peder Severin Krøyer
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:
Now it’s your turn. Lengthen the list and join the party. It’s our time to celebrate!
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Holiday 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!