Category Archives: Perspectives

Wistful Longings From Half Moon Bay

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Thanks to an enthusiastic gentleman in Munich, Germany, we recently found another post-polio anthology author and are happy to share her works with you.

Back in 2014 we published an “all points bulletin” in search of several authors who had sent us original compositions to hopefully publish in a book. Sadly, for many reasons, their writings were buried for 15 years. But as a result of our renewed online search, several of the authors responded and gave permission for their writings to come alive on this blog.

The following poems are by Anthonette (Toni) Keffeler, who was a published writer and accomplished visual artist. Toni had bulbar polio at age ten. While no respirator was necessary, there was muscle loss in the face, neck and throat with general weakness of skeletal muscles. Pool treatments were followed by a wheelchair, then crutches, then a fair recovery. Mrs. Keffeler went on to be a figure skater during her teen years, to work her way through college and art school, and to teach art for nearly ten years. Then, plagued by fatigue and arm muscle problems, Mrs. Keffeler had to stop working. There was no diagnosis. Toni Keffeler was born in 1930 and died in 1994 in Half Moon Bay, California. In the late 1980s Toni sent us three poems.

Perhaps Toni’s seaside verses have a message for us 30 years later?

WAVES

I have watched the waves

For all the seasons,

And now I know

How distant they begin,

What they spew upon the shore,

And the dazzling turmoil in between.

I know each pattern of the waves

Except the one now coming in.

My strength too belongs to the sea.

I can stand along my sand

And reach.

And when the wave erupts we collide

Into song.

I have been loyal to my wave watching,

And when our tide is strong

I’ll know,

And I’ll go

Watch the waves.

BUTTERFLY

A butterfly,

If I had not passed by,

Would have opened its wings

Alone in the sky.

(Having just begun,

We could move as one.)

LOWER BIRD

I watched while the shadows swept along the shore

Until well past,

And looked to see a lower bird,

Smaller than the rest.

I saw it soar!

I would say…IF I were he;

“I cannot fly as far,

Or as long,

Or as high,

Or as free,

But my shadow was mistaken, here, for yours.”

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It seems that in struggling, even suffering, with increased confinement —

perhaps brought on by greater weakness,

or pandemic restrictions,

or economic constrictions, or cabin fever, or chronic cynicism…

or…or…or… (you say)

–one might long for greater freedom of movement and spiritual momentum,

if only for an enthusiastic moment;

to be released…

to soar in the wind like a bird or butterfly or even a snowflake.

Toni left us, but her human relatability did not. What do you think?

Spring always comes,

Sunny

P.S. Still searching for the following authors:

Floy Schoenfelder

Lee Whipple

William Wild

Agnes Fennewald

Charlotte Snitzer

Ann Bradley

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

 Where can you be?

Do you know there are millions of polio survivors living in our world today? Many are suffering with new medical problems from polio. To help with education and important services click here:

https://post-polio.org/support-us/donate/

Announcing PHI’s “Shining Star Hall of Fame Campaign”

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A Message to Polio Survivors from Post-Polio Health International (PHI)

https://post-polio.org/

Who Is Your Shining Star?

If ever there was a time that we have become more aware of devoted health care workers, it has been during the worldwide pandemic. 

During this time of our own personal self-isolation, we have had plenty of opportunity to spend time alone with ourselves, in reflection. So, as we have simultaneously witnessed the courage and compassion of many health care workers working tirelessly today, we think too, of the parade of health care professionals who have helped us over the years.

We often hear complaints about how so many health care professionals are ill-informed when it comes to treating individuals who are struggling with the late effects of polio. But what about the ones who are doing a great job? They are the shining stars!

PHI believes now is a perfect time to highlight their excellent work. It will be a privilege to express sincere gratitude for their ability to listen, their knowledge and their compassion as we roll out our new campaign to showcase your favorite health care workers.

By way of The Shining Star Hall of Fame Campaign you are invited to publicly convey your gratitude toward and provide well deserved recognition to that special health care worker–a person in the health care arena who really made a positive difference in your life. It could be long ago or just recently.

To spotlight your Shining Star:

  • Simply donate to PHI in honor of your special health care worker.  This could be a doctor, psychologist, any type of therapist, chiropractor, nurse, dentist, home health aide or someone you know that has provided exceptional care and concern and helped you with your individual needs. Donate at: https://post-polio.org/support-us/donate/
  • Submit a short biography and a photo of the person along with a few words about why you nominated them and your photo.  Then send it to director@post-polio.org. Brian will follow up and contact you.

You will be recognized as a donor in their honor. They will receive a letter of recognition, a free subscriptio to PHI’s newsletter, Post-Polio Health, a giant thanks from PHI, and their story will be showcased internationally on the PHI website and in the newsletter.

We have all had medical people in our lives who do ordinary things that have made an extraordinary difference!  They shone brightly for us during our darkest times.  This is your chance to honor them in a meaningful way and support your post-polio cause. It is a win-win for all. 

Who are your shining stars? The ones that have gone beyond the call of duty for you?

Let them know.

Then let PHI know.

Thank you!

Sunny

P.S. To keep the excellent work of PHI alive and healthy, you can be a star too! Donate at https://post-polio.org/support-us/donate/

How’s Your COVID Quarantine Experience Been? Terry, James and Barb Talk About Life During Lockdown

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In May, I interviewed three individuals who experience life with a spinal cord injury (SCI). They, like the rest of us, have had to deal with the challenges of self-isolation during the pandemic. Currently living in different parts of the US, they thoughtfully and candidly answered my questions about their quarantine experience.  Terry Chase is from Colorado. James Murtha lives in Michigan. Barb Schoen resides in Texas. Their personal introductions follow.

Terry Chase

I have been injured since April 1988 with a T-12 incomplete SCI. I use a wheelchair most of the time and can walk short distances with braces and crutches.

I hold a doctorate in Nursing and am an Assistant Professor of Nursing-Mental Health/Leadership at Colorado Mesa University, Grand Junction, Colorado. In addition, I am working as a professional coach offering individual and group experiences for growth and transformation. I served as the Patient & Family Education Program Coordinator for 18 years at Craig Hospital. I am a person who has lived fully with spinal cord injury for 29 years and have been active in all things outdoors; including kayaking, cross-country skiing, hand-cycling and whenever possible, horseback riding.

James Murtha

I had a spinal cord injury on October 5, 2014 and am paralyzed tetraplegic C-4/5 incomplete.

I have a Master’s degree in Social Work and work in the mental health field as well as volunteer in political advocacy and creating adaptive products to make my life easier. Before Corona, I was living in my own one-bedroom apartment with my service dog, Phoenix.

Barb Schoen

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I acquired my C-5/C-7 spinal cord injury in December 1997 in a motor vehicle accident and have benefits through no-fault insurance. These benefits have kept me healthy and helped me maximize my life as an individual with a severe disability.

After my injury I acquired a Master’s and a PhD in Rehabilitation Counseling from Michigan State University.

I currently live in Mission, Texas, and work as an Associate Professor at the University of Texas Rio Grande Valley (UTRGV). I spent the first seven years of my academic career at the University of Texas at El Paso (UTEP) where during part of that time I served as the Program Director for the Master of Rehabilitation Counseling Program. In 2017, I made the decision to relocate to UTRGV to focus on my true passions, teaching and research.

During my 10 years in Texas I have lived in border communities near some of the most dangerous cities in Mexico. Despite insurmountable challenges, both El Paso and Rio Grande Valley have a collective spirit of community and determination to work together to overcome the significant health and service disparities they encounter. I am proud that I’m able to help make a difference.

_____________________________________________________________

Each of my interviewees answered the same questions about their quarantine experience. Their answers follow.

Interviewer: Please describe your living circumstances during the lockdown months.

Terry: I live in my own home with my married partner. I am independent in all activities except picking up dog poop along my yard’s rough terrain. I have continued to work from home as a professor and coach. The one thing that has changed is that I’m not driving all over town with students since the lockdown orders were issued.

James: Since Corona, I have been living with my parents at their house in Saline, Michigan. For a brief period, I had my usual care agency personal attendants coming over to my apartment. Then once the stay-at-home order was enacted, my parents volunteered to take on all my care to keep the three of us safe. Typical daily activities have changed throughout the quarantine. At first, I was kind of blowing in the wind, jumping from activity to activity, days unplanned.  Recently, though, I have created a not-too-overextending daily schedule and added little time management techniques including the Pomodoro strategy which involves taking pre-planned breaks.  I’ve also set new goals, which have helped me to keep my mind active and to not dwell on the current global situation too much.

Barb: I currently live in an accessible house in a gated community about 10 minutes from the university. I am blessed to have 24-hour nursing and share my home with four cats (two 13-year old’s and two recent rescues).

I telecommute to work and have kept surprisingly busy with teaching, research, and service activities. I keep a regular schedule, getting up in the morning and heading to my home office where I spend most of my day and quite a few evenings. I’ve never been good about separating work from home so not a lot has changed for me in this area. Because I have 24-hour nursing services, I do have people around so I’m not totally self-isolating. Still, I’m not engaging with colleagues and friends in a personal way. In this quarantine, I miss the occasional play or dinner out with friends.

Interviewer: What has been the most difficult stuff to deal with during the lockdown?

Terry: I miss seeing my students and assisting with their development in becoming good nurses.

James: The most difficult thing to deal with during the lockdown has been taking care of my mental health, particularly with wondering if I am spending my time wisely. I see this time as a possible gift, or opportunity, and don’t want to look back wishing I had done something more useful. It has also been challenging having my parents take over all my care because I get concerned about asking them to do too much. I don’t want them to either physically hurt themselves and/or burn out. I have missed getting out and around town.

Barb:  

  • The fear of catching COVID-19.

I recognize with my diminished lung capacity and age that If I acquire the virus it will be a challenge and likely a fight for my life.

  • Not being able to control my environment 100%.

While I have personally self-quarantined for over two months my caregivers do not have that luxury. So, I am only as healthy as they are. We practice safe techniques, (e.g., wear masks and clean surfacesdown twice a day). Still with the estimate of 70% of the population ultimately catching the virus I constantly live in fear every time I have a sore throat, headache, or slight temperature.

  • Long term access to food and personal protective equipment (PPE). 

While I currently have a decent supply of masks and PPE for my nurses and food in my freezer, I am concerned that this pandemic will get worse and these items will become in short or no supply. Three of my orders through Amazon for medical supplies have not made it to my doorstep (they appear to have been intercepted along the way).

  • People not taking this pandemic seriously.

I fear this will result in limited access to food and PPE as noted above.

I miss shopping and eating out. Every Sunday was my day to put work aside and get out and enjoy a great meal and the joy of shopping. I never really bought much. It was just the opportunity to look around at pretty things. I think it was an escape from my everyday life, endlessly running round and round in the proverbial hamster wheel of frantic monotony. Occasionally I still enjoy a nice to-go meal and shop online, but it’s not the same.

Interviewer: What has sustained you throughout this time of self-isolation?

Terry:  I have many personal and spiritual practices that have helped me during this time. I have had more time to meditate, play guitar, and do creative projects.

James: When it comes to what has sustained me during this time, I think it would come down to staying busy in ways that feel valuable and staying connected. During this lockdown, I’ve made it a goal to really work on myself and take care of many things I have been neglecting. I have been reading a lot of books and taking some free online classes; trying to work on my reading speed and my own efficiency with personal management. Like I alluded to before, scheduling, and other techniques have helped because routine is important. Journaling has also been valuable.  Video chatting with friends and family members has been reassuring.  I shamefully admit I often don’t have the desire or energy to talk to other people, but then I know it is very important for my health and wellness.  I usually feel better after I decide to connect; so good conversations keep me going.

Barb:  Staying in touch with friends and family through phone calls and weekly virtual visits with sisters and extended family has been heartening. My sister and I will record and watch television shows together even though we’re 1400 miles apart. I have also found comfort in the fact that I am financially stable and able to telecommute for work. Finally, the support of my family and caregivers is immeasurable.

Interviewer: Upon reflection, what are three unexpected good things that have come out of this pandemic quarantine experience?

Terry:

  1. I now know I am ready to move toward an independent Personal Coaching Practice and let go of full-time teaching.
  2. I have enjoyed more bike riding miles and more consistent horseback riding sessions.
  3. I have had greater companionship time with my partner and with my dogs, along with more time to read and listen to books on Audible.

James:

  1.  I have reached out to and spent more time with people who were already distant from me (living across the state, country, or globe) than before the pandemic. I hadn’t been giving as much of my attention to many friends and family members before, because of the mindless hustle and bustle which created tunnel vision and disillusionment. Now I feel more connected with important people in my life, at least somewhat. 
  1.  I have learned that, despite not being able to individually move my fingers, I am a decent sketch artist and a great guesser when it comes to figuring out what other people are drawing! I have spent quite a bit of time on apps such as Houseparty with friends and family and have gotten pretty good at “drawing” games.
  1. Third, one of many other things I have learned, has been realizing that life keeps moving on, even during a lockdown. Time waits for nobody and it still flies by. I can’t believe it has already been nearly 2 1/2 months and people do adapt. Those in my circles and I have adapted to the situation and are still moving forward.

Barb:

  1. An appreciation for a time without quarantine.
  2. The hope that this will shine a light on what life is like for many people with disabilities who live a life of quarantine due to lack of transportation and personal assistance.
  3. The generosity and bravery of home health care workers. I had a situation where I needed coverage and asked a nurse who didn’t work regularly with me if she could come over. In good conscience I told her she was covering for a nurse who while not diagnosed, was symptomatic for COVID-19 (fortunately she was not positive). Initially the PRN nurse said no because she worried about risk to her children. She called me back within minutes stating, “I’m a nurse and ultimately became one to help people. I’ll be there tomorrow and pray for the best.” It brought me to tears.

Interviewer:  Finally, what advice would you pass along to our readers who live with SCI and are still forced to shelter in place?

Terry: 

  • Focus on the question: what do you want to create?  Choose to be a creator rather than a victim.
  • Learn something new.
  • Polish an old skill.
  • Call some people; have a conversation.

James: 

  • Figure out what works for you. You may have other priorities and not agree with the way I manage my time; and that’s OK. Figure out what is important to you, hold onto it and pursue it more fervently than you ever have.
  • Journaling and tracking what you are grateful for doesn’t hurt either.

Barb: 

  • Focus on what you can do. I’ve taken this approach since I first acquired my spinal cord injury over twenty years ago. It has helped keep me busy and relatively content. So, while it may be easy to say, I do think that it’s important to find things we love and then focus on those areas.
  • Try to help others when possible. I had some craft kits from Oriental trading for a party I planned before the pandemic put the event on hold. One day I saw the box just sitting there in my spare room and thought I could share it with others. I sent a text to my neighbors with pictures of the crafts and asked if anyone wanted them for the family. The response was instantaneous. At least seven families responded, and I was able to give parents and their children a few hours of fun activity.
  • Reach out for support when you need it. Support comes in many forms. It may be calling a friend or family member to tell them how lonely, sad, or mad you feel. You may also need the help of a professional counselor through an organization or agency that provides tele-counseling.
  • Make lemonade. Make the best of your downtime by cleaning out a closet or a kitchen cupboard. While I’m still working, one of my sisters who is off has taken the opportunity to walk every day and clean her yard and basement. She has made the biggest pitcher of lemonade I’ve seen.

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This article was first published at the University of Michigan, Michigan Medicine website: https://medicine.umich.edu/dept/pmr/research/research-areas/spinal-cord-injury-research/michigan-spinal-cord-injury-system-mscis/sci-news-events

Looking forward to your comments,

Sunny

A Declaration of Interdependence

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“Need help with that ladder, Grandma? No? Splat! OMG! Grandma fell from the ladder! She’s grimacing in pain and can’t get up! Call the ambulance! There goes Grandma off to the hospital. Sigh. I wish Grandma knew that asking for help isn’t a cop out. It takes courage at first, but after that, it would make life a lot easier for all of us.”

It seems that many people who are living into later life resist asking others for help in the name of independence and “not wanting to burden anyone.” But what might life really teach us about managing its never-ending onslaught of challenges? Maybe sharing my experience will be useful. As a polio survivor for 67 years who has used crutches, leg braces, and now an electric scooter to get around, I was taught searing lessons early on about the difference between dependence and independence.

Dependence was a bad word. It conjured up images of being shut away in a medical institution or in a back bedroom somewhere, sick and infantile, totally reliant on others. I was also taught as a child not to be a burden on others and was chastised when I was moving in that direction. Now I wonder about that. A burden? What does that mean? I guess it means being emotionally and physically needy, being a taker, childishly weak, unable or unwilling to participate in reciprocal relationships with those around us. When we are too dependent, do we become a thorn in the side of those near us, an affliction imposed upon others?

Independence, on the other hand, was a good word. A very good word. As children of the polio epidemics of the 1950s, we were indoctrinated with the goal of becoming fiercely independent as we went through our initial rehabilitation from acute polio.  “Do it yourself! You fell? 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 messages I often heard from my parents and therapists. And those lessons worked well for me for a long time.

Now, as a mature adult who continues to live with a physical disability, I contemplate: could it be that dependence versus independence are two unreasonable extremes? Too much dependence can lead to dysfunction and low self-esteem. Conversely, too much independence can lead to burnout– always giving, always super-achieving.  

What, then, is the most sensible way to manage our daily lives now? Our greatest American document, other than the Constitution, is our 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: our own Declaration of Interdependence!  Not wilting dependence. Not blazing independence. But interdependence.

Interdependence. It’s “the quality of being mutually reliant on each other.” 

Trying to be that timeworn kind of independent doesn’t work as we grow into our later life years. Trying to do everything without help is not only isolating; it can be dangerous.  Climbing a ladder to hang curtains? A broken hip is no fun.

Traipsing in the snow and ice to my roadside mailbox instead of arranging for front door mail delivery with the post office? Let’s think outside the box (or in this case, the mailbox) about that issue! Asking for convenient mail delivery wouldn’t be viewed as a cop out by anyone. It’s a smart thing to do. For me, front door delivery has become an opportunity to share a smile and good words with my mail carrier. And I know by her friendly tidings that she appreciates our positive rapport. Our new arrangement may also have spared her the horror of finding me stranded and struggling in a snowbank trying to retrieve my mail the old way.

These days painting the fence or planting a garden could easily result in a fall, and then a popped bicep when trying to push up from the ground. My Declaration of Interdependence advises me to find a few twenty-year-old’s who love outdoor work. Then give them some of my best home baked cookies, some money and my full attention as they do the work, share their interests and tell me all about their life plans. This way, everyone gains from the experience.

At first it might feel humiliating or distasteful to ask for new assistance, but it can be done. In fact, in my own medical situation, I discovered the hard way that it must be done. When I unexpectedly faced new debilitating pain, weakness and fatigue, known as polio’s late effects, I had to ditch my uninformed ways of managing medical and lifestyle challenges. Now I pace myself and metaphorically, “take the elevator instead of the stairs.” I also make sure to tap into the advice of physical and occupational therapists regularly.

Since the early 1980s, polio survivors numbering in the hundreds of thousands around the world have, in the spirit of interdependence, created and participated in our networking organization, Post-Polio Health International (PHI).  Through PHI, post-polio medical professionals and survivors have learned from each other about the late effects of polio. They have become healthcare-interdependent. Banding together, they have supported cutting-edge medical research, built an extensive library of scientific and historical information (https://www.polioplace.org/) and continue to advocate for resources. It’s powerful to witness medical professionals and their patients become each other’s experts as they come together in conferencing, publishing newsletters, and linking up on a variety of web-based platforms.

Interdependence. It’s “the quality of being mutually reliant on each other.”  Under the guidance of this new Declaration, my neighborhood buddies and I now have added opportunity to enjoy each other’s company because we are more open about expressing our changing needs.  As we talk, we agree to show up for each other in new ways. In the process, we have identified one key to success.  I make sure that what I ask others to help with is something they genuinely like to do. Some enjoy running errands. Others treasure their cooking skills. Still others love to help with craft or sewing projects. And they, in turn, know what I would do best for them. Drawing upon our specific talents almost always guarantees that our exchange will be mutually rewarding. 

My Declaration of Interdependence also extends to willing strangers whom I encounter in public places. Often, I ask unsuspecting shoppers at the grocery store for assistance in reaching items on high shelves.  My reciprocal gift to them can be sizeable or simple. A warm hearted thank you and recognition that their kind assistance is truly valued may be the only boost they have had all day.

Adopting a renewed level of mutual exchange makes sense because we have always needed others and they have needed us. Surprisingly, I have found that life can be even more deeply gratifying as I risk receiving and giving in unexpected new ways.

Living out my new Declaration of Interdependence has been different.

It’s also been delightful.

Thanks for reading,

Sunny

This article was previously published in Post-Polio Health, Summer 2019, Volume 38, Number 3.


To help, click on:

https://www.gofundme.com/f/sunnyvan

Re-Inventing Christmas

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This year, December ushered in a dim and bewildering Christmas season for me. My family members all had important new personal plans that barred me from celebrating Christmas day with any of them. No family at Christmas. They’d been there through life with me so often, so supportive.  But this Christmas I wavered, forsaken. For the first time in my 70 years, I had not even been invited. Of course, I sincerely understand and accept that my west coast sister and her husband have every right to take a well-earned trip and my gulf coast brother and his wife needed to be present at the birth of their first grandchild. Of course. They have their needs too. It’s not all about me. Absolutely.

But, being a never-married single woman, having no family within 2000 miles, I was suddenly orphaned in the frigid, snowy Midwest. I felt trashed. The  message rang out like a perverse Christmas carol: “You’re on your own again…fa la la.  You’re independent…la la la. You’ll figure it out…ho ho ho.”

As I sat in church waiting for the early December Advent service to begin, I realized that this had become a Confusing Christmas. There was a big gaping chasm in my life that used to be experienced as Christmas with Family. Disoriented, I had been left wondering how to re-invent my own Christmas celebration at home.  I especially did not want to be left out–isolated and feeling forlorn on Christmas day. That would have been awful.

So, with the coaching of good friends, I decided to re-invent the Christmas celebration I had always known. Looking back, we came up with a three-step process that I want to share with you in case you ever need to re-do your Christmas celebration. Here it is:

  1. Be proactive. Tell everyone you know and like about your new Christmas quandary.

  2. Immediately make plans to actively celebrate in old and new ways that include spreading the Christmas spirit by giving to others.

  3. Wait and watch for a few Christmas miracles to happen.

Here’s how a new Christmas unfolded for me…

Step 1:

I began letting all my friends know that I would be in town for Christmas and that I’d love to get together. Many of them shared with me the joys and benefits of being surrounded by their large families of choice–close friends who are there to function as family when needed. They are the dear friends we choose to be members of our inner circle. My close friends and I all agree that “it takes a village” to support and love us in this life; and my buddies reached out. They turned themselves into my first ever, living “Christmas village!”

Step 2

Christmas plans emerged. I wrote and sent more Christmas cards than I ever had in the past. We made flower arrangements for 22 friends and, donned with Santa hats, delivered them all over town. We attended Christmas concerts, a dinner, 2 luncheons.

We also baked dozens of Christmas cookies and secretly left 4 dozen of them out for the young construction workers who, from dawn to dusk, were re-roofing our snow-laden high-peaked building in freezing December temperatures. They found the baked delights on the open tailgate of their pickup truck with a Christmas card thanking them for their hard work.

My friends and I shared lots of stop-by visits at my place to exchange gifts, converse over dinner and catch up. What a joy! While visiting, several of my “Christmas companions” confided that by necessity, they, too, were in the process of re-inventing their personal holiday celebration.

Sarah came over one day with gifts. We ordered pizza and watched Christmas in Connecticut. During the afternoon she confided that she too is struggling with how to re-invent her Christmas traditions. Her kids were gone for the first time this year. She is officially an empty-nester. As she begins to redesign her future Christmases, she has decided to minister to people around her who are the most downtrodden and marginalized in our society–the homeless, mentally lost, and ill. She has a special heart for people with serious disabilities.

Another super-close friend, Lily, came overnight for a gift exchange, dinner, and a movie. We watched It’s a Wonderful Life. She has confided that she and her husband had suffered and struggled with the thought of having no big bustling family celebration at their home on Christmas day, with lots of food, chatter, and gift-giving. Their kids announced that they would be over to celebrate on December 23rd, not the 25th. They both felt discounted by thoughtless adult children who made plans without their input. Now, how could Christmas day be anything but bleak? But wait! On Christmas morning she wrote, “Merry CHRISTmas! What a beautiful morning with the new snowfall. Relaxing, quiet day. So nice to be done with everything and just enjoy the day. Wow! Another new experience! Another new experience for both of us. And isn’t life just full of them? Blessings to fill up the holes/spaces where something else has left our lives, and literally made room for new and wonderful experiences to wander in. Another grace-filled gift… Now how is that for a fun and comforting way to look at those future changes–challenges that we know will come?”

Step 3

During the course of planning for a new Christmas celebration away from family, several friends apologized that they would have me over on Christmas day, but they couldn’t. There would be no way to get me into their homes since I use a wheelchair full time and they have many steps. I knew ahead of time that that would be true with so many. Limited options. Barriers. Barriers to friendship. Barriers to fellowship. Barriers to sharing Christmas together. I would be left out. No room at their Inns, I guess.

But then! A completely unexpected Christmas miracle happened! A fellow, who is my handyman, stopped by one early morning to bring us some baking supplies. As he sipped a cup of Christmas coffee we had gratefully offered him, he cheerfully invited me and a friend over to share Christmas Day dinner with him and his significant other. Totally unexpected since we had never done anything so social before, I was thrilled! No dark, cold, lonely Christmas Day without family? Wow! What a Christmas surprise!

His face suddenly changed from smiley to somber as he began mulling over some new thought. Hesitating, he confessed that he wasn’t sure I could get into his house because he only had stairs at his front door.

Oh no! Shut out again in spite of good intentions. Heavy sigh. What a burden.

He left that morning wondering. Should he have extended the invitation at all?

A few long days passed. Then he sent me a text. When I opened it, I realized that I had just received the best Christmas card anyone could have possibly sent…

 

 

 

He had built a ramp!

I was still welcome and wanted! 

That was all I ever needed to know.

And oh, we had a wonderful Christmas day together…turkey with all the trimmings, a 9-foot Douglas Fir tree sparkling with colorful ornaments, Christmas carols softly wafting through the rooms, candles glowing, Christmas stories read aloud to each other, gifts exchanged, a rollicking game of Christmas trivia. Seen through huge picture windows, a lacy panorama of fresh white snow on woodland branches provided the perfect backdrop for such a gathering of peaceful hearts brimming with good cheer.

What a wonderful Christmas Re-Invented!

And, as I look back, out of  this Christmas re-invented came a new invention. It’s that process for navigating unexpected change and loss in life which offers help and a hope for renewed happiness.  All I need to do is remember it.

“God bless us, everyone!”

 

Thanks for reading

and Happy New Year to You and Yours,

Sunny

 

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

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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

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

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

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

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

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

  • medical specialist
  • surgical patient and
  • friend/consumer

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

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

Liina’s Story

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

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

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

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

The First Congregational Church of Ann Arbor

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

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

Her Choice to Have Surgery

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

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

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

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

Rehabilitation after Surgery

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

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

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

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

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

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

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

Identification of Surgical Goals

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

Accepting the Lack of Medical Knowledge

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

Current Recommendations

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

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

Post-Surgery Shockers

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

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

Lessons Learned

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

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

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

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

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

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

My Take-Away Lessons

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

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

This is indeed a cautionary tale… 

 

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

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

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

P.S.

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

 

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Spring Always Comes

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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?

Why the Weight? Losing a Few Pounds Is Possible Right Now. Why Wait?

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Even if one uses a wheelchair full time and has a metabolism that is a bit slower due to aging, losing weight is possible.  I had almost given up, but then 14 months ago, my doctor fiercely demanded that I lose 10 pounds. If I did not, she threatened to infuse me with some creepy medication.  How terrifying!  At that time, since I had quit walking with braces and crutches two years before, I was close to 50 pounds overweight.  And I knew that the extra weight was not only undesirable; it also made my abilities to transfer and move about so much more strenuous and dangerous.  As I pushed, twisted and lifted my body around every day, my hands, arms and shoulders were at imminent risk for injury and worsening carpal tunnel syndrome.

Looking back, I started to struggle with overweight issues at the age of 11. As I grew into womanhood with an obvious physical disability and a polio survivor’s drive to succeed, losing weight was usually on my mind. It plagued me like a whispering snake, reminding me that I was too fat, which magnified my shame—silently saturating my gut with a dark remorse. I sincerely wanted to shed the pounds, but could never figure out how to do it. Or maybe I wasn’t scared enough to do it.  My thoughts ranged along a scale from “why this weight?” to “oh, why not wait?”  Throughout my busy adult life, I ate when the other girls were out dancing or flirting. I ate at social events with friends. It was easier to meet for dinner than to go roller-skating together. I also ate poorly; grabbing fast food when I was super-achieving to meet my latest professional work deadline.

But now, in my retirement years, “why not wait” had abruptly turned into “don’t wait; too much weight!” For 58 long years, I had not been caring for my body properly. I didn’t know how. My halfhearted attempts had always failed.

reevesSomehow, though, I had actually hung on to hope. A spirited twinkle inside me knew that, “All things are possible”.  I did believe that for me there had to be a key to success. Other people lose weight, why can’t I? I wasn’t born overweight nor was I overweight as a little girl with a disability from polio.  I wanted to get back to who I really am—innocent and unburdened–free from obesity and that incessant snake murmuring in my ear.

So, optimism in hand, with the ironically “blessed threat” of some freaky new medication propelling me forward, I began arduously searching. My deep inner resolve arose. I hunted for a logical strategy and a little magic to help guide me on a new path to weight loss.  One that was feasible and effective. Delightfully, I found both—the strategy and the touch of magic.

The first step was to pay attention to the process of caring for myself. Really taking good care. What a lovely goal. Polio survivors do know how to set a goal and achieve it and I was now adamant. Focus, focus, focus. Then re-focus when focus wanes. The next step was to choose a strategy that involved a comprehensive set of tactics. I needed to go at it from all angles—exercise, healthful eating, and cognitive/emotional support.

sunstepbbThe exercise opportunity already existed. I just had to tweak it a little. I had found a gym program at our local rehabilitation center that would help me. After a time of physical therapy for an arm injury a year before, I attended what was called a “post-rehabilitation gym clinic”. For a monthly fee, former patients could work out at the gym with the assistance and support of enthusiastic rehabilitation technicians. It was perfect. I could go every day of the week and work out on the NuStep machine or stand and walk at the parallel bars. They also would help me weigh myself on a scale to track weight loss

Here’s where the magic of kindness appeared first. When they found out I was working to lose weight, they lifted their established rule of short-term membership. They agreed to let me work out for as many months as I wished; knowing that my goal had moved from rehabilitation to weight loss.  So, I keep working out at the gym.

For more details on the reasonable high intensity interval training that my post-polio specialist, Frederick M. Maynard, M.D., recommended, refer to my post of May 15, 2015 titled “Recipes for Regeneration.”

The second part of my strategy was to eat properly. This was a huge challenge because my kitchen is not very accessible and I don’t like to cook. But I knew I needed to start eating clean. Eating clean is the latest buzzword young people use to mean “include whole foods like vegetables, fruits and whole grains, plus healthy proteins and fats; and exclude refined sugar and processed food”.  I had been to WeightWatchers numerous times throughout my life and knew they had the most widely acclaimed sensible eating program. So for $20.00 per month, I signed up this time for WeightWatchers Online.

See: https://www.weightwatchers.com/us/plans/onlineplus

57b64293964beb883da5f9c1680e64ff-mmmIt was convenient and I found a huge selection of recipes that were “clean!”  But I didn’t like to cook. That was a problem. One day a friend was listening to me trying to solve the challenge of not cooking, when she suggested that I ask my current housekeeper, whose contract was only for cleaning, to prepare three WeightWatcher meals for me each week. Here’s where the magic of kindness appeared once more. My housekeeper agreed to stretch her skills. She genuinely wanted to help and encourage me in my weight loss effort. The magic of her generosity and kindness made this part of the strategy work. And my world of “clean eating” joyfully became a reality. I choose the recipes, shop for the food and she cooks them up in my inaccessible kitchen. It is wonderful.

I had found a way to exercise and eat healthful foods, but I knew I needed a third tactic–the psychological support to keep going and learn about my weight problem in greater depth. I asked my physician for a referral to a program at the University called “The Hunger Within“.  She said, “Oh you don’t need that, but if you want to, I will”.  With resolve and referral in hand, I joined the 12-week support/counseling group. It was fascinating and helpful. Actually, it involved a therapeutic technique called cognitive restructuring. Cognitive restructuring refers to any methods that help people think differently about a situation, event, thought, or belief. Cognitive restructuring shifts a person from irrational destructive thought to positive and healthy thinking about any given idea. For class members, it was all about how we see food and the meaning of food in our lives. When are we REALLY hungry, versus when do we simply WANT FOOD?

We learned that with practice, we could change our thoughts about food. I discovered that I often automatically eat when I am bored or lonely.  That kind of emotional eating alone can lead to unwanted obesity.  Did you know that some people want to eat a lot of bread because it brings them closer to an important person in their past lives—like a mother or grandmother, whose homemade bread was irresistible and symbolized love and nurturing?  Or that some people crave a lot of sugary products because there has not been enough sweetness in their lives; but perhaps abuse or harshness from those around them? So I have learned that I can change my distorted thinking and practice more constructive ways to alleviate boredom or loneliness as I develop exciting new interests, and build deeper and more active friendships.

The magic of kindness also emerged from the class in a powerfully different way, as I continued my weight new_book_cover-gbloss journey.  “The Hunger Within” ultimately teaches that we must practice being kind to ourselves. If we want to become physically healthier, it’s our job to replace any self-criticism with self-compassion. As we forgive our mistakes, and nurture the inner joy and goodness that shone in our faces as little children, our thoughts about other people become kinder and more compassionate too.

This class is only conducted at the University of Michigan, but Marilyn Migliore, the workshop’s creator and leader for 20 years, relays that there is a website associated with it. This site describes the program in detail and provides an opportunity to purchase the book. She reports that many people across the country have formed monthly reading/discussion groups with weight-loss in mind. They study the book, chapter by chapter and apply its premises together.

See: http://www.thehungerwithin.com/

Before my physician’s warning, I had nearly given up. Then I changed my mind. With fierce focus and fresh hope, I worked to adapt that three-part strategy to my unique situation.  The kindness demonstrated by those around me has added the magical power that completes the equation. As others continue to teach me how to be kinder and more nurturing of myself, I believe the adipose tissue will continue to fade away. Funny how that works.

Since my physician’s warning in May of 2015, I have lost 15.5 pounds. Not dramatic. Not perfect. But moving in the right direction—about a pound a month.  I slowed down during the cold, winter months, but continued to lose a little.  Now I am focused on shedding 10 more pounds by Thanksgiving.

Losing weight is a feasible goal, even if one is a polio survivor in later life who uses a wheelchair full time.  Why the weight? Who needs it? Why wait? From this experience, I can earnestly say—losing a few pounds is possible…right now.

This article was originally published by Post-Polio Health International in their newsletter, Post-Polio Health (Summer 2016, Volume 32, Number 3).

 

I guess my question now is…because I have 35 pounds to go,

“what do I say to myself at this point to stay enthused?”

Gotta keep going in the right direction…

 

Thanks for reading,

Sunny

 

Zest at its Best: Wheeling Through Portugal and Spain

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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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