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.”
———————————————————————————————————————–
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:
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 TheShining 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?
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.
BarbSchoen
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:
I now know I am ready to move toward an independent Personal Coaching Practice and let go of full-time teaching.
I have enjoyed more bike riding miles and more consistent horseback riding sessions.
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:
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.
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.
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:
An appreciation for a time without quarantine.
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.
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.
Grandchildren… travel adventures…great books to read… unexpected kindness from strangers. Growing into our late life years can be an ever-emerging kalidescope of new and delightful experiences.
It’s also true, however, that growing older can confront us with a variety of medical issues. Often these diagnoses can lead to new physical and functional challenges, which can, in turn, lead to daunting financial peril.
For people with an evolving disability, medically prescribed adaptive gear might include a variety of “mobility machines,” architectural adaptations, or medical equipment. Our physician may recommend a wheelchair or scooter to help us get around easier. Or a wheelchair-accessible van to drive. These and other adaptive aids can cost thousands of dollars. Even if what we need to maintain our mobility is medically necessary to stay healthy and well, often the message we recieve from our health insurance companies is, “sorry, you’re on your own.” Isolated. By ourselves. Not valued. Left to quietly decline and eventually disappear? Ugh!
How can this be?We live in a very wealthy country–“one nation under God”.Americans who need important medical equipment, should not be abandoned; forced to suffer and subsist.
But wait!There is help. There is hope. In unexpected places.
Having personally experienced the angst of needing a new adapted van and not having the required $80,000 in my budget, I was recently forced to think outside of my own financial box. After soul searching and doing the research, a group of friends and I teamed up to seek help.
We discovered that crowdfunding was the answer. After 11 months of fundraising, we are delighted to announce our success. I now have a wonderful wheelchair accessible van that will keep me on the road for years to come. Our team witnessed many little and large miracles and blessings along the way and came to know more deeply that reaching out for help is nothing to be ashamed of. In fact, we became more inclined to believe that the word HELP can stand for Hello Eternal Loving Presence!
In an effort to encourage others to reach out for financial support, a couple of us soon embraced a fresh inspiration. We wanted to do the hard research work and diligently dug deep into the internet to create a 22-page list of national resources that will help provide necessary dollars for medical and adaptive equipment to private individuals. It’s titled, A Polio Survivor’s Guide: Funding Resources For Medical and Adaptive Equipment. Now published on Post-Polio Health International’s website (see link below), the list is available and ready to be used by not only polio survivors, but anyone who has a disability.
Dr. Frederick M. Maynard, well-known post-polio specialist, further presents his perspective on the value of this new resource guide by way of his written introduction below.
Living well with a physical disability in the United States is an expensive proposition. Most medical insurance coverage is very limited, sometimes nonexistent, for expenses needed to acquire necessary medical equipment, even ventilators for people who are unable to breathe adequately or wheelchairs for people unable to walk. “Medically Necessary” criteria for coverage are not uniform between plans, co-pays or coverage limitations can be burdensome and spending limitations often lead to poor quality items. Almost no insurance plans contribute to costs for architectural modifications of homes, vehicles, clothing or adaptive equipment that could increase one’s independence, productivity and/or quality of life. Consequently, many US citizens with physical impairments feel like they pay an “American surtax on disability”.
This resource guide has been assembled to assist Americans with disabilities, particularly polio survivors with significant motor and breathing impairments, to find financial assistance for the costs of obtaining desired medical equipment and/or environmental adaptive modifications that are otherwise not affordable to them. Post-Polio Health International (PHI) has a long history as an organization committed to helping polio survivors live independently despite severe post-polio disabilities and their late effects. It has always encouraged polio survivors to take matters into their own hands and to assume personal responsibility for finding solutions to any barriers they may face to achieve the meaningful lifestyle they desire.
It is in this spirit that a team of investigators, coordinated by Sunny Roller, has produced this compendium of possible resources available to assist people with disabilities obtain the adaptive medical and rehabilitative equipment and environmental modifications they determine that they need. Users will still have a lot of work to do in “selling their needs” to potential funding sources and identifying those local or regional funding sources mostly likely to be responsive to their needs.
As a physician specialist in Physical Medicine and Rehabilitation with over 40 years of experience in helping polio survivors, I acknowledge their frustrations in dealing with our American healthcare system because of its apparent lack of support for people with disabilities in achieving their optimal potential for independence and quality of life. I have also witnessed the incredible persistence, creativity and intelligence of polio survivors in coming up with effective unique solutions for overcoming their barriers. I sincerely hope and expect this resource guide to be of assistance to many people with disabilities who are otherwise limited in achieving their personal goals because of financial barriers to acquiring needed equipment and environmental modifications.
Frederick M Maynard, MD, FAAPMR Member, Post-Polio Health International Board of Directors; Chair, Medical Advisory Committee
“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.
We want to find hidden financial resources across America that will specifically help polio survivors purchase medical equipment. This would be equipment that health insurance providers, such as Medicare, rule as unworthy or unnecessary to furnish.
Being disabled in America can be very expensive—especially if one is a polio survivor. The cost of medical equipment not covered by health insurance can be outrageously high-priced, yet critically important for sustaining a satisfactory quality of life. Polio survivors, with progressive physical impairments especially, are often required to personally pay what feels like an extra “American tax on disability” because government funding for many adaptive devices is negligible. Beyond the basics, health insurance plans and government agencies offer little or no financing for increasingly necessary items including split size pairs of shoes, bath lifts, specific electric scooters, wheelchair-adapted vans and respiratory equipment.
Many people assume that all “medical equipment” is covered by one’s insurance, but that is frequently not true, or the co-pay owed by the individual needing medical equipment can be more than someone on a limited income, such as Social Security or Disability, can afford! A few examples are Medicare and many health insurances will not pay for powered stair lifts that would allow a person who no longer can safely climb stairs to continue to live in a home with stairs. And, although Medicare will pay 80% of the “usual and customary” cost of a powered mobility scooter or power wheelchair, they will not pay for any extra devices attached to a vehicle that are needed to transport the scooter/wheelchair and thus allow the person to leave their home.
Being able to access some additional funding to help cover these expenses can mean the difference between people being able to live independently and having a meaningful life in the community versus being in some sort of care facility or being lonely and isolated. I am frequently asked by polio survivors about financial resources for such instances, and I have no way to find what may be available outside of what I have learned from experience. Having a directory would be enormously helpful to me as a medical professional and to the persons who find themselves making difficult choices about their quality of life and safety and financial issues.“
Very little about any possible funding is known or ever shared with polio survivors. There may, however, be a variety of sequestered financial resources that do exist and are available for polio survivors who need to purchase medical equipment. Chive Charities is one example. It provides financial aid for equipment to individuals who have a rare disease such as Post-Polio Syndrome. There may be more resources like this one that exist, but because the research to compile a specific funding directory has never been undertaken for state and national use, post-polio consumers and their providers are currently left believing there is little to nothing available.
So, a couple of us are heading up this new project to unearth resources. Sponsored by the University of Michigan Department of Physical Medicine and Rehabilitation and Post-Polio Health International (PHI) we are taking the time to do a deep search of the internet and reaching out to consumer and professional networks. Our goal is to then create a list and publish it nationally for everyone to use and share. This effort will be not only groundbreaking but also useful for polio survivors who rightfully feel deserted by our health care system.
As the facilitator of an active post-polio support group, and as a polio survivor, it has become obvious that polio survivors are an abandoned group in the area of health care services and funding for essential equipment necessary for daily living. Funding services are especially scarce and difficult to identify. For example, I have received calls from hospital social workers searching for available funding or financial aid, not loans, for patients desperately needing medical equipment, such as braces, a lift, etc. There is a real need for a current directory of funding sources. This type of directory would prove to be an invaluable asset for polio survivors and other interested parties.
–Bonnie E. Levitan, Chairman, Southeast Michigan Post-Polio Support Group
You can help us build this important list, one step at a time!
Just respond to the following question by using the comment section below:
Where have you/your post-polio friend or relative/post-polio patients found funding for medical equipment that health insurance did not cover?
This would be actual monetary support, not loan closets or low interest loans. Please send us the name, address, phone number and web address along with a two-sentence description of how the specific national or state resource (ex: a philanthropist or organization) would help polio survivors pay for needed medical equipment.
We hope that by the end of summer, we will have a good long list
of helpful financial resources that PHI will advertise and publish on their
website. Wish us luck!
Thanks for reading,
Sunny
P.S. This new project has evolved out of my own personal angst. I call it “dignified desperation.” I currently need help to purchase a new wheelchair-accessible van. To learn more, click on Fred Flintstone!
On a deep-frozen wintry day in Michigan, it’s revitalizing to rekindle warm memories of our Bay Cliff Post-Polio Wellness Retreat last September…
Offered for the past 11 years at the Bay Cliff Health Camp in Michigan’s Upper Peninsula, such post-polio wellness retreats have created a wonderful opportunity for polio survivors.
The exceptional feature of these wellness retreats is that they have been designed to zero in on the unique and little-known needs of people who are growing older with polio’s late effects.
Located 28 miles northwest of Marquette, Bay Cliff’s woodland getaway is not only beautifully situated on the shores of Lake Superior; it is completely wheelchair accessible. This retreat’s venue and program design intentionally foster a safe haven for open exchange among polio survivors. Everyone is encouraged to feel like part of a supportive family of friends.
These adult campers arrive, ready to learn and have fun. This year, over 40 polio survivors, along with friends and spouses participated in the retreat’s full range of daily programs that were designed to address wellness of mind, body and spirit. Everyone received individualized attention from a blend of volunteer retreat facilitators—post-polio physicians, counselors, nurses; physical, occupational, and recreational therapists; members of the clergy, and those from a wide range of other helping vocations.
As my winter reverie brings our Bay Cliff experience into even clearer focus, I realize that we were indeed having smart fun. First, we had intelligently chosen to learn even more about living with a post-polio disability. We were shrewd seekers of good health — reaching out to discover how to incorporate new positive health behaviors into our lives.
Every day we attended educational programs. Topics ranged from up-to-date information about post-polio syndrome, to exercise, to meditation, to tapping into our spiritual strength. People learned all kinds of new information and came to practical, often profound revelations.
Here’s one practical piece of camping information that Mark discovered:
“Powered chairs and crutches are much more effective in the camp environment than manual wheelchairs. There is too much stress put on the shoulders with the manual lightweight chairs, especially when traversing the inclines around the camp.”
Perhaps as powerful, was the support and information that post-polio participants exchanged with each other. We openly shared life experiences that included many of our well-earned secrets for living a successful life with a disability.
Bonnie revealed:
“I find as I am held captive more and more by my advancing disability, more adjustments have to be made and sometimes I am not sure how or what to do. Or sometimes, I am not aware that adjustments even need to be made because I am in denial or just have not come to the conclusion that things have changed. At some points, I find I am owned by regret rather than taking action (or maybe less action in the case of PPS). Being at Bay Cliff is so freeing…no pretenses… and I am informed by my own regret rather than being owned by it. Sometimes it takes being with others who share your issues to realize problems need confronting, and I learn lessons on how to confront them in a safe, healthy way.“
As people shared many of their personal challenges and concerns, deeper friendships were nurtured. And Frederick Maynard, M.D. international expert on the late effects of polio, continued to be one of our best friends. He not only was a primary founder of the program in 2006, he has also attended each year, providing medical direction and generously answering each person’s particular questions. During the course of every day, he could be seen freely helping retreat participants with medical advice and counsel, whether it was during a planned group session or in a spontaneous one-on-one encounter. As one camper disclosed, “Words cannot express the level of devotion and commitment that Dr. Maynard has for the polio population. I have grown to love and respect him for his efforts, knowledge and deep understanding of what we are going through. You can see it in his eyes.”
We were not only ready to learn; we were also ready to have fun. This often meant taking part in experiential learning opportunities, which were set up to be both engaging and enjoyable. For one short week we had become pampered campers and smiling sunrise watchers. Every activity was adapted for us so we could participate. We went fishing, swam, danced, sang, walked and rolled on nature hikes. We had lively fun in the balmy warm weather as we learned important tips on how to stay healthy. In our sixties and seventies, many of us had first-ever recreational experiences, like learning how to dye silk scarves or discovering how to use a bow and arrow.
On having fun, Cathleen conveyed:
“I’d never heard of the NuStep and really enjoyed trying and learning it. I thrilled to the recumbent hand-cycling with Don as we flew down a country road incline. He adjusted and fixed a bike so it fit me. Dr. Maynard kindly helped me walk into Lake Superior, however briefly! There were so many fabulous experiences that I can’t list them all. I’d never been fishing before and thoroughly enjoyed that sunny and relaxing afternoon in the pontoon boat on Lake Independence with Max, the expert fisherman. I loved the warm pool and helpful lifeguard. I remember the wonderful picnic in the sunny orchard and picking plums afterwards…”
Oh, and before the week was up, we had adopted a crazy, new, original camp song destined to become a Bay Cliff classic. We sang it throughout the week to the chorus of the “Beer Barrel Polka.” For all the brave songsters reading here, you may want to try singing it…
The Post-Polio Polka
Roll out the scooters
We’ll have a barrel of fun!
Whip on your braces
We’ve got the blues on the run!
Seize both your crutches
Sing out a song of good cheer.
Now’s the time to dance our polka
‘Cuz the gang’s all here!
We’re all at Bay Cliff
Happy to sing you this tune!
We “get” each other
And we’ll be leaving too soon.
Dance how you want to
Now we have nothing to fear!
Polio’s become our polka
‘Cuz the gang’s all here!
Catchy music, fresh air, new information, physical activity, emotional support…the positive impact of Bay Cliff’s post-polio retreat can be long-lasting.
Simply rekindling the warmhearted musical memories of our retreat has revitalized my own feelings of inspired renewal and loving regeneration. That’s a wonderful gift.
It’s a big bear hug on this very cold winter day.
Or, perhaps better said…
it’s a big Bay Cliff hug.
Scrunch! (that’s the sound of a friendly e-hug),
Sunny
P.S. Have you ever thought about starting a post-polio wellness retreat in your area?
A similar post-polio wellness retreat will be held this year high in the beautiful Colorado Rockies. It will be sponsored by Colorado Post-Polio and Easter Seals Colorado and is titled Colorado Post-Polio 2018 Rocky Mountain Getaway. It will take place from Sunday, August 19 thru Thursday, August 23, 2018 at the Rocky Mountain Village Camp in Empire, Colorado. For more information contact Nancy Hanson, Easter Seals Colorado, 393 S. Harlan St., Suite 190, Lakewood, CO 80226. Phone: 303.233.1666 x237
To see additional online articles about past post-polio wellness retreats, check out:
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 asChristmas 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:
Be proactive. Tell everyone you know and like about your new Christmas quandary.
Immediately make plans to actively celebrate in old and new ways that include spreading the Christmas spirit by giving to others.
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.
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.
We discovered that crowdfunding was the answer. After 11 months of fundraising, we are delighted to announce our success. I now have a wonderful wheelchair accessible van that will keep me on the road for years to come. Our team witnessed many little and large miracles and blessings along the way and came to know more deeply that reaching out for help is nothing to be ashamed of. In fact, we became more inclined to believe that the word HELP can stand for Hello Eternal Loving Presence! 
It’s titled, A Polio Survivor’s Guide: Funding Resources For Medical and Adaptive Equipment. Now published on Post-Polio Health International’s website (see link below), the list is available and ready to be used by not only polio survivors, but anyone who has a disability. 
Very little about any possible funding is known or ever shared with polio survivors. There may, however, be a variety of sequestered financial resources that do exist and are available for polio survivors who need to purchase medical equipment. 
