Find A Gain for Every Loss: A Lesson from our Post-Polio Wise Elders

Egads! This September 1st I am going to turn 70 years old. For me, that is an inconceivable milestone. Me, 70? How could that be? Seventy sounds so…well…”old.”

Turning 70 seems to be a natural time to pause and look at the big picture…to reflect and look back at important events. Rewinding through the years of my life…hmm…what do I see?

In 1952 I was just 4 years old, running, skipping through summertime sprinklers, then suddenly almost dying from “infantile paralysis”…

…then at the age of 12, listening and bopping in my braces and crutches to “Rockin’ Robin” on the record player…

…at the age of 17 in 1965, being voted class optimist at our fancy senior dinner and soon off to college…

…4 years later, having just turned 21, teaching English to my first class of very tall, very bright high school seniors…

…then just 31, becoming a college dormitory “housemother” trying to convince students not to get drunk and pull telephones out of walls or set off false fire alarms at 3:00 AM…

…then at 33, breaking down with the late effects of polio, soon to be working with with my newly found post-polio physician, starting my next university career teaching and  researching all we could about what in the world was happening to polio survivors 30 years after they first got it.

All those years and experiences are pretty long past now. But they are still part of me and my personal gestalt every day. They are not lost. I do not grieve for them since they remain in my mind and heart as wonderful experiences that shaped my life and the lives of those I touched.

My difficult losses have been the heartbreak of losing friends, lovers and family members to break-ups or death.  Can’t whale watch on the beach with the same boyfriend anymore. Can’t chat with Mom anymore over a long cup of coffee sitting side by side on the old screened-in front porch.

My toughest losses have also come as physical losses of strength and function.  Can’t hear as well. Gotta get a pricey hearing aid soon. Can’t walk anymore. Gotta use a scooter full time. Can’t sleep at night free from the entrapment of a respirator face mask. Uuf!

It’s true, the older we get, as nature takes its toll, the greater life losses we must gradually come to deal with. We must learn the fine art of grieving over and over.  It is a sad requirement if we really want to thrive during our late life years.

But how do we do that? How do we thrive in the midst of heartbreaking loss? How do we grieve well and then let go enough to forge ahead with grace and hope? It is not easy. But it is possible.

The only way I have been able to move forward after a life loss has been first, to cry my guts out and acknowledge my sorrow. Over and over.  Then, when I am ready, and sick of being so sad, I work to reinvent a new reality and perception of my life.  I look hard for some fresh gain in the aftermath of that debilitating loss.  It can be a large gain or a small gain. Doesn’t matter.  Just some gain. I work to reinvent my reality because I absolutely refuse to get stuck in the devastation which loss has the power to create, if we let it. Stomp! Stomp! That is not where I want to live every day.

About Loss From The Wise Elders

When I did a national study of fifteen “post-polio wise elders” in 2007, these role models for successful late life adaptation with a disability taught me about reconciling losses.   One hundred percent of the group expressed that adapting to losses had been a major life challenge, beginning with the termination of normal physical functioning at polio onset.   Loss of both function and the appearance of being an able-bodied (“normal”) person in society set off personal struggles from childhood until retirement.

Accepting early polio-related losses was difficult, and for some was still ongoing. One woman shared that she is just now dealing with her original polio losses: “I—it brings me back to seeing all those children in the ward that wouldn’t walk again. And I’ve never dealt with those images. [Sobs] Terrible!”  By contrast, another man said that he sees his disability now as simply “a speed bump (or pothole) on life’s highway.”

Everyone in the group was also dealing with mid to later life losses that were both physical and social. The entire group (all were over 65 years of age) reported having the late effects of polio–new weakness, pain, and disabling fatigue in recent years. Most of the group had developed at least one new physical problem such as high blood pressure, edema, high cholesterol, and/or circulatory problems.

One woman shared how losing her accustomed level of mobility was difficult: “I had to give up. I couldn’t defy nature anymore. It was harder than (after) the first battle with polio.” A combination of shame, grief, and relief was expressed at having to use new assistive and mobility devices.

The other losses that these polio survivors described as difficult to reconcile were social losses. It was the painful descriptions of social losses during the interviews that generated the most tears. These included the death of a spouse and/or friends, moving to new locations and leaving old friends and family members behind, and retiring from jobs.

In spite of major life losses, the wise elders, who are people with complicated physical disabilities from polio, have shown us that by using the powers of positive reappraisal, it is possible to reinvent ourselves. Turn the negative around and make it a positive. We can reinterpret life after loss. Shift our focus from what we have lost to what we have left.

About Gain From the Wise Elders

Believe it or not, many of the wise elders agreed that, in spite of new functional losses, life is somehow better now, than when they were younger and physically stronger. Perceptions have changed. There seems to be a new freedom that both an evolved, more positive perception of disability and not being in the workforce bring. When asked for a word or phrase that describes life for them now, their responses included:

 

  • Comfortable
  • Flourishing
  • Grateful
  • Excellent
  • Open
  • Wonderful, full, happy
  • Satisfying, good
  • Hopeful–filled with a sense of anticipation
  • Good, fulfilling
  • Better than expected–like a dream come true

They began to transform their losses into opportunities for gain. A woman from the east coast shared that getting older doesn’t always mean getting worse. A new flexible schedule in retirement offers her the freedom to do what she wants, like browse for a long time in bookstores, Even though financially life is a little more restrained. Several people shared that their perceptions of others who have a disability have changed in late life, due to their own greater self-acceptance.  They are more compassionate and caring toward others than in their more competitive earlier years, when they had to “push, push, push–use it or lose it.”  One man even revealed that he enjoyed flirting with women in grocery stores now. He said “being older with a disability can give one license to ask for help and hugs…I’m an old guy and everybody thinks I’m not dangerous!”

These well-grounded role models teach us that on the heels of life’s deeply felt losses, potential gains swirl all around us. It’s not easy to see them at first, but as we invite them into view, and claim them one by one, it is possible to find the excitement in life again. In the process, we gotta ask for help and hugs.

Then, when we suddenly catch ourselves spontaneously flirting with a fellow shopper amidst the carrots and rutabaga during our next trip to the supermarket, we’ll know we’re back up and running again! It’s what I call “a wise elder effect.”

 

Yup! Next month I turn seventy…time for a little levity…carrots and rutabaga, here I come!


I’d like to take this opportunity to say “Thank You” to the wise elders for their comforting words and for living humbly as such inspiring examples. Some of these polio survivors have passed away. Most are still going strong.

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

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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Spring Always Comes

Hi! I wrote a post about a month ago and I didn’t publish it because I didn’t want to sound like a whiny complainer. But today, the Monday before Easter, I realize that sometimes we ALL have dark times, sad, tempestuous seasons, that happen without warning and seem to endure, even regenerate-regurgitate themselves like a curse, well beyond their unwelcome time.

But today I know in my heart and by the aspiring robins, hyacinths, and tulips outdoors, that “spring always comes!” Easter tells its story once again. The continuous mini-crucifixions and resurrections that I have experienced throughout my life are the times that can change me. My only hope is that they change me for the better.

But how? This time I once again reflect upon the blessings of family, friends and faith. Can’t be afraid to ask for help! I learned that somebody’s really got my back when I reach out! Even found lingering inspiration from a lovely book on the power of gratitude that I am currently savoring with a cup of coffee every morning. If you’ve never read One Thousand Gifts,  I highly recommend it…

And so, I got through the tough time described below and learned or re-learned a lot. More about that after you see the story written one month ago…

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It’s almost St. Patrick’s Day and Spring is just around the corner in Michigan. Or is it? Right now, a mid-March snowstorm is raging outside my front door! The wind blows fiercely, swirling three inches of fresh snow off rooftops onto the sidewalks and streets below. This winter’s weather has been confusing for us in the Midwest–warm enough for green spike daffodil leaves to emerge three inches up from the garden ground. Balmy enough for bright bluebirds to excitedly flit through the air, joyfully teasing mates.

But wait! Suddenly now the flowers and birds hide. Millions of people huddle together in warming centers to battle frigid temperatures.  They’ve had no power or heat for five days. Brrrr!

In fact, it’s been a pretty crazy winter for me too. Machines that I depend upon have been either getting wrecked or suddenly fallen apart. First, an inexperienced driver illegally tried to careen left across five lanes of thick Christmastime traffic and hit my adapted van. Luckily there were no bodily injuries. But that ended up being seven thousand dollars of auto damage and left me stranded without any personal transportation/community mobility for six weeks. I became a prisoner in my house! Weird. It was like someone cut off my legs. It reminded me of being stuck in bed–a four-year-old, paralyzed with polio.  Then my microwave and clothes dryer both overheated. One caught on fire. No injuries once again, whew! But both appliances had to be discarded and replaced. Then last week, one of my pet parakeets suddenly died, leaving her lonely parakeet partner and me behind to mourn. Within a few days after that, I was on my electric scooter, zooming in front of a grocery store entrance when a young woman who looked like Beyonce came barreling full speed ahead through the automatic entrance door, t-boning her big metal grocery cart right into me! She banged my knee. Good Grief! Rattled for about an hour afterward, I remained lucky enough to be relatively unharmed. Have also been grappling with ominous fiscal and post-polio physical threats that have been insidiously tormenting me. How can I cut costs and earn enough new income to continue to support myself? Should I have surgery or not? Would I be able to withstand the debilitating and expensive rehab process afterward?

I know, “life is messy,” but needless to say, I am really ready for a new season.

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Here’s what I learned:

  1. If a car insurance company wants to total your adapted van because they don’t know what the adaptations are worth, you must teach them over and over again on the phone until they understand.
  2. If your doctor’s office doesn’t understand why it’s urgent to get a form into the transportation company for a disabled transport pass, tell them.
  3. Overcoming obstacles involves both learning new methods for success and being open to seeing the miracles all around. My friends can teach me a lot.
  4. Trusting your instincts is useful.
  5. Talk to good doctors and therapists.
  6. Ask for assistance. Let your friends and family help you. Giving gifts and help strengthens the givers! Sometimes even more than the receivers.
  7. Give thanks over and over.
  8. Seek the good in everything. Yes, everything.

Each one of these points could be the topic of so many good conversations!

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Finally my challenging, rather tiring winter has passed.

Ah…Spring! Easter comes soon. I see flowers. Lots of colorful flowers as I begin to think about the joys of my garden. Do you have a garden too?

Zest at its Best: Wheeling Through Portugal and Spain

Camino_de_Santiago_111

The Cathedral of Santiago de Compostela

The following story is about a spiritual pilgrimage through Portugal and Spain.

Susan Peters, the main author of the account, has a spinal cord injury and is a full time wheelchair user. Her story of spiritual renewal, physical daring and warmhearted camaraderie makes me want to return to Europe to travel “The Way” like she did. It must have been such a beautiful experience. See if you agree…

Sunny

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With Duct-Tape and Daring: Elated Friends Complete Rugged Wheelchair Adventure

By: Susan Peters with Sunny Roller

The Camino de Santigo or “Way of St. James” is a mostly mountainous route that adventure travelers take imagesvvvto reach the Cathedral of Santiago de Compostela.  Tradition has it that the remains of Jesus’ apostle, James, are buried at this cathedral in northwestern Spain. Hundreds of thousands of Christian pilgrims and many others set out each year from a variety of popular starting points across Europe, to make their way to the sacred site. Most travel by foot, some by bicycle, and a few travel, as their medieval counterparts did, on horseback or by donkey. Learning this, I decided to try it last Fall–using my wheelchair.

I’ve been a manual wheelchair user due to paraplegia from a spinal cord injury for 40 of my 68 years and I am still looking for adventure and mountains to climb.  So, when a friend of mine suggested that I test my audacity and dare to set off on a wheeling expedition for hundreds of miles along the Camino de Santiago, in Europe, my eyes lit up. In need of personal renewal and sparked by the possibilities of this expedition, I made a commitment to travel “The Way.” Not just for its physical challenges, but also to rejuvenate my zest for life.

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There are many routes to the cathedral. Pilgrims on the Way of St. James walk for weeks or months to visit the city of Santiago de Compostela. Some Europeans begin their pilgrimage on foot from the very doorstep of their homes.

Soon I had recruited my hardy crew of four people–two hired guides from Portuguese Green Walks and two great friends. After avidly planning the trip’s daily itinerary, off we flew to Portugal on September 25th.There are many different routes to choose for this strenuous pilgrimage to St. James’ resting place, but to receive the certificate for traveling The Way, one must clock at least 120 kilometers and stay on a route marked with yellow arrows.  I selected the Portuguese way, beginning in the city of Valenca then along ancient paths north into Spain. Once I determined the route, the hard part was convincing people it could be done by wheelchair. Wrapped up in this initial challenge was actually finding a set of strong-willed, committed, physically-able helpers who not only believed it could be done, but also wanted to go. They were out there. I just had to look.

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Ready to roll from the beginning, Susan and friend Nuno, face a rocky road ahead.

Excited and ready to roll at the starting point, I immediately confronted several dozen stone steps leading down-down-down to a narrow ancient path and then a dirt trail. That was when reality hit me–this excursion would not be the slightest bit easy.  Every hotel was slightly different; so I was glad I had my friends with me to help with shower and toilet transfers, which was the hardest part of the trip, really. By day seven, the rough terrain had snapped off all of the metal screws on my front foot plate, and I had to continue the journey with a wheelchair that was partially duct-taped together.  As we pushed ahead, we came across so many gorgeous sites that also became challenging delights. We walked and rolled through bustling ancient towns and pastoral cow pastures.  We forded streams and bumped over bridges only a few inches wider than the wheelchair.

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The countryside.

Pushing and pulling, we climbed steep hills and zig-zagged our way down rugged, bumpy Roman roads that had been laid in ancient times using boulders or giant stones. Not easy or comfortable to roll over.

In spite of the obstacles we bashed up against from start to finish, this adventure through Portugal and Spain exceeded every one of my dreams.  All along the way, human warmth and camaraderie carried us.  I met pilgrims from the U.S., Brazil, Korea, New Zealand, Serbia, and from other parts of Europe.

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The cuisine.

With spontaneous chances to intermingle every day, fellow sojourners and I took delight in sharing warm companionship and stories of our trek. The people who live along the Camino wanted to commune and gave me a joyful sense of belonging. They energized us with constant encouragement, welcoming smiles, and nourishment of all kinds. And they shared so much–from replenishing my water supply, to enfolding us in big bear hugs, to sharing important secrets about the trails ahead.

With each new dawn I felt a fresh sense of renewal and restoration.  As we continued to walk and roll along the rocky hillsides and over singing woodland rivers, my companions and I came to hear The Way’s new harmonies that seemed to be caroling just for us. We sang and danced. We hugged trees.  We savored delicious hot meals–oysters, clams, rice, sausage, kale soup and Portuguese wine graciously served up at our wayside inns.  We happily stopped at so many shrines and churches along the way, praying for the power of love to heal our world’s wounded.

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Susan (center front) and comrades finally arrive at the cathedral.

After 120 kilometers, we arrived in Santiago at noon on day ten of our journey, just in time for Mass at the cathedral.   Quickly escorted to a front row seat, I was elated to experience the famous incense burner dramatically swinging right above my head.   Suspended and swaying back and forth from a very long rope through the resplendent cathedral over hundreds of pious onlookers, its wafting smoke and scent seemed to cleanse and coat us with a mystical sense of comfort and reassurance.

It was also my 68th birthday that day. So after the mass, we found a cozy outdoor café. With wine glasses clinking, we heartily celebrated our successful journey AND my birthday. A moment I’ll always remember. We did it! I did it! It was a wonderful feeling as we jubilantly turned ourselves into a lively Spanish fiesta.

I enthusiastically encourage others who use a wheelchair to consider taking the Camino de Santiago.  I was so thankful that my therapist had suggested I take a FreeWheel for my chair. (See photo below.)  It’s an attachment that enables your wheelchair casters to be lifted off the ground, turning your chair into a three-wheeler, so you simply roll over any obstacle: curbs, dirt trails, grass, gravel, snow, and sand. I couldn’t have gotten along without it. (To learn more go to https://www.gofreewheel.com/)

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The FreeWheel attachment on the wheelchair’s front enabled easier passage.

When you go, strong friends, a FreeWheel, patience and perseverance are a must.  Also remember to pack rain gear, a wheelchair repair kit, and layered clothing. If I can do it at my age, with arthritis and brittle bones, you can too.

For more information contact me at speters@msu.edu.

 

Bom Camino!

 

Susan Peters, Ph.D.  is an Associate Professor Emerita at Michigan State University, College of Education.  As a Fulbright Scholar and educational consultant for Ministries of Education, the World Bank, and UNESCO, her work focuses on inclusive education policy and practice for people with disabilities in cross-cultural and international perspectives.

 

In 2011 Martin Sheen starred in a movie titled THE WAY about one man’s journey to the cathedral. THE WAY is a powerful and inspirational story about family, friends and the challenges we face while navigating this ever-changing and complicated world. Martin Sheen plays Tom, an irascible American doctor who comes to France to deal with the tragic loss of his son (played by Emilio Estevez). Rather than return home, Tom decides to embark on the historical pilgrimage “The Way of St. James” to honor his son’s desire to finish the journey. What Tom doesn’t plan on is the profound impact this trip will have on him. Through unexpected and oftentimes amusing experiences along THE WAY, Tom discovers the difference between “the life we live and the life we choose.”   It is well worth watching.

Check it out here: 

 

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The above story by Susan Peters, Ph.D. was first published in the Spring/Summer 2016 newsletter, SCI Access. Distributed annually by the University of Michigan (U-M) Spinal Cord Injury Model System within the Department of Physical Medicine and Rehabilitation, SCI Access is sent to 1200 readers in Michigan and across the country. For more information about this program that focuses on people who are living with a spinal cord injury, see their U-M website:  http://pmr.med.umich.edu/SCIMS

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Thanks for Reading!

 

Want to add an adventure like this to your own To-Do List?

What do you think?  Feel free to comment…

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Messing With The Great Pumpkin

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

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

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

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

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

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

 

It’s the…

grape pumpkin

 

“GRAPE PUMPKIN!”

 

 

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And so, it is in the spirit of enjoyment,  

merry -making and 

The Grape Pumpkin

that

I wish you a very

Happy Halloween!

Thanks for Reading,

summer.jpg

Sunny

 

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

you may want to try this season…

linus

From my friend, Susan.

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

 

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

Gulp. I was nervous.

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

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

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

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

Thanks so very much for your

help and support!

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Nourishing the Body, Mind and Spirit: People, Pictures and Pasties

What a great time we had at the Bay Cliff Post-Polio Wellness Retreat this year!

Wonderful people, lots of pictures and finally an official Upper Peninsula (U.P.) pasty to take along for safe travels as we departed.

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In mid-September, 45 polio survivors and friends converged upon the tiny town of Big Bay, Michigan to immerse themselves in five days of restorative rest and activity. There is such a wonderful feeling of love, care and complete acceptance at the retreat. People instinctively understand each other and share compassionate support all week long. Smiles are on every face in the pictures because we are so happy together. There have been ten such retreats since the program started at the Bay Cliff Health Camp in 2006 and, boy, did we ever have fun this year!

race

Click on the photo above to see the first annual post-polio scooter race. Average age of racers: 72 years young. (Grrr! After an explosive start, I came in second. I’m already working on a hot new strategy for next year!)

Bay Cliff is located right on the shores of beautiful Lake Superior in Michigan’s Upper Peninsula. It’s a perfectbaycliff sunrise getaway spot for our holistic wellness program. The sun rises every morning directly in front of the lodge’s big screened-in porch. Rows of old fashioned rocking chairs invite us to settle in with our freshly brewed cup of coffee in hand to welcome the bright new day. The wind softly rustles through the tall surrounding hardwoods that are just starting to glimmer yellow and orange in the early daylight. The lake begins to sparkle as we inhale deeply, inspired by the crisp fresh air and the stunning sight before us… Cameras start clicking. Then the breakfast bell clangs through the camp grounds, heralding all to join in friendly fellowship for a family style breakfast. It’s 8:00 AM. The day has begun.

From Monday evening through Friday evening, the days were filled with a myriad of educational and recreational activities customized especially for polio survivors. We discussed how body, mind and spirit can all work together to create good health.

bracemakers 2

Fred Maynard, M.D. (top center) and our four orthotists. (left to right) Alicia foster, Ken McMaster, Michelle Carlson, and Joe Baczkowski teamed up to provide customized one-on-one bracing advice to participants at the “Bracing and Mobility” session.

BODY: We learned more about the physical aspects of having had polio–specifically the late effects of polio; what’s new from physicians, researchers and therapists. Throughout the week there was a variety of sessions on relevant topics such as, “post-polio pain,” “aging and general health,” “what’s best for you in bracing,” “food as medicine,” “acupuncture,” and “the benefits of massage.” Speaking of massage, everyone received a free one during the course of the week. Each morning we participated in exercise opportunities such as swimming, yoga, Tai Chi or cardiovascular workouts. Lots to do. One lady, new to the retreat, stated that her primary goal for attending was to learn about “how to keep moving.” She sure was moving every time I saw her!

MIND: This year we watched and discussed an excellent DVD on the mind-body connection and how scientific studies are proving the critical impact that the mind has on healing the body’s variety of illnesses. I highly recommend that you get a copy and watch it. It’s not only helpful; it’s also fascinating. Because it’s about 85 minutes long, this would make a great two-part support group program with discussion. For more information on this DVD, click on the following link: The Connection: Mind Your Body.

SubstandardFullSizeRender (1)SPIRIT: The presentation on spirituality this year was titled, “Spirituality for Wellness: Completing the Healthy Trinity of Wholeness.” After focusing on the wonderful power and value of inspiration in our lives, we got into small groups and discussed the following questions:

  1. What was a time in your life that was a real low point for you? A time when your inspiration had seemingly abandoned you, leaving you alone and miserable?
  2. What were some warning signs that alerted you that you were getting stuck in your doldrums?
  3. What did you do to reach out for inspiration that brought you out of it? Describe your avenues back to inspiration. Was it through your mind or body? Were there spiritual exercises like meditation or prayer that you tapped into? Where did your spirit lead you to rediscover your inspiration? What has worked for you?

The group came up with a long list of spiritual strategies and insights that have helped them get through discouraging times.

Beyond the educational content of the program, there were many recreational activities to join in on every day. These included accessible nature hikes, lighthouse tours, an ice cream social, coloring in coloring books for adults, table games, ceramics class, fishing, movies, and singing around the campfire–complete with s’mores (the American and Canadian campfire treat: a roasted marshmallow and a layer of chocolate sandwiched between two pieces of graham cracker).

Cornish-Pasties upFinally, on Saturday morning, as we were preparing to head home, our hosts made sure everyone got a homemade pasty for the road. Pasties are a special U.P. delight originally made popular by the Cornish and Finnish miners in the old days. They are made by placing an uncooked filling, typically meat and vegetables, on one half of a flat shortcrust pastry circle, folding the pastry in half to wrap the filling in a semicircle and crimping the curved edge to form a seal before baking.  U.P. insiders told us that the best pasties in the entire area come from Lehto’s Pasties in St. Ignace. They use the freshest meat and have been in business for 68 years.  Pasties are great for road trips. They are a tasty treat that can be a whole meal in themselves. No silverware needed!

As we left Bay Cliff, the joyful spirit of the retreat continued to linger long after. In fact, I tapped intocamp Sign that joy as I  wrote this message for you (smile) …

 

Thanks for reading,

Sunny

 

treesP.S.  Post-polio wellness retreats are a wonderful option for polio survivors who are growing older and seeking strategies to stay healthy and feel good. Since the first retreat at Bay Cliff in 2006, similar retreats have sprung up at Georgia Warm Springs, across Australia, New Zealand, and most recently in Colorado. Perhaps your group would consider organizing a retreat in your area? You’d need to start with an accessible retreat location and a group of skilled organizers. It can be done and is very rewarding.

What are your thoughts on this?

 

P.P.S.  I am happy to announce that I will be guest-speaking at the Power Over Polio Support (POPS) group in the Seabreeze Recreation Center at The Villages near Ocala, Florida at 1:00 PM on February 12, 2016. Group leaders tell me that if you are in the area then, you are more than welcome to attend. Looking forward to this event!

 

P.P.S.S. One major and recurring message from our retreat was how important it is to control the stress in our complicated lives. Having a disability can be more than challenging at times. And too much stress can ruin good health!  Here’s a nicely-written book that might help. Lately I have enjoyed reading the daily meditations in …  

runnP.P.P.S.S.S.  Personal weight loss update: my doctor told me to lose 10 pounds by Halloween. To date, I have taken off 11.5 pounds, which isn’t too bad I guess, since I was away from my routine at the exercise gym and healthy WeightWatcher’s eating plan for five weeks. Vacations.  Now I’m back and staying on track better. Whew!

Gotta keep going! 

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Celebrating Independence Day Makes Me Think…

…About Moving From Independence to Healthy Interdependence

 

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

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

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

WOW

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

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

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

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

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

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Who needs to do stuff alone all the time? (Photo: Bay Cliff wildflower taken by Paula Lemieux)

If we need more, we need to ask for more. No guilt. We still have much to contribute now; maybe even more, but in different arenas. We don’t need to prove ourselves in the mainstream workplace and keep up with our non-disabled competitors. We can make new disability-related adaptations and be content with who we are really becoming, and what we need to do to live well during our retirement years.

Growing older with greater disability can offer us a fresh sense of not only comfort, but also liberation. I love having a flexible schedule that I can coordinate with my energy levels. It’s great to have time to Skype or play Skip-Bo with kids, do my scrapbooking and card making, walk and roll with my friends along the river’s edge, and contribute to my special social causes. Another unexpected thought–because of feedback I’ve received, I think I have somehow become more beautiful in certain ways as I’ve aged. And that’s in spite of new fat, wrinkles and deformity. Maybe it has to do with personal essence. Not sure, but I think that phenomenon is possible for each of us. We can mysteriously become more attractive. In many important ways, life can be better in old age than it ever was in youth. Especially when we each figure out how to adopt our own personal Declaration of Interdependence.

So stay tuned! Next time we’ll focus on the sacred exchange of giving and receiving.

Until then, I’m interdependently yours,

Sunny

P.S. Weight loss update: I have shed nine pounds since May 13th. Much more to go. Onward!

—Many thanks to Sue Rasmussen for her editorial assistance with this post!—


What are your thoughts on all this? 

Would love to read your comments…


 

Of That Unspoken Feared “Post-Polio Syndrome”…

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

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

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

–Joan L. Headley, M.S.

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

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shadowxxIt’s How You Feel Within

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

We hide our fears,

Our weakness we somehow muster under

Go on and on and then…

The rumbles begin like thunder.

At first it’s just a little tired

And vitamins will help.

Some exercise, a little more sleep

Just get a hold of yourself!

cvb

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

“I can’t do that anymore”

And your family says “Come on, come on,

You’ve never been a quitter before.”

So you struggle up and say

“Yes that’s true.

I’ve been through so much already17711cc

I can beat this too!”

And then one day

That remembered day

You knew.

The rounds of doctors start,

And prayers flow from the heart.

Please Father God, not this again

This battle I must win!

But prayers go unanswered, weakness sets in

And pain, and most of all Fear.

Where will it end for me, Lord?

How will I be next year?

Take this my child and serve me wellgeranium

Even if it’s just your example

People will know by your actions and faith

That my care is always ample.

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

Locked in this body, that hurts when it moves

These legs with unsteady gait.

Remember my child, Milton wrote long ago–

“They also serve who only stand and wait.”

Acceptance and peace begin anew.P1000934xx

Your heart can sing again.

There is a wonderful life for me now…

It’s how you feel within!


ABOUT  THE  AUTHOR

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

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

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

 

butterfly

The Search for Anthology Authors Continues…

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

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

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

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

Thank you!

Sunny

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

Toni Keffeler

Sofia Baltodano

Bruce Berman

Roberta Dillion Williams

Becky Lee Vance

Jean Hamm

Ann Goodhall

Ginger Sage

Shirley Hile Powell

Elizabeth Reeves

Doris Vanden Boogard

Donna L. Mattinson

Marie Galda

Alan M. Oberdick

Emma Blosser Hartzler

R. N. Hackney

Robert C. Huse

 


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