Tuesday, January 20, 2015

Living with a Disability, Part 3: Enjoy Your Journey

Leaping Larry, author photo
This post is the third in a series that will explore attitudes and assumptions about disability.
1. People 'on the outside' (having no disability or no visible disability) make a lot of assumptions about disabilities.
2. But people have a disability in the context of  living real lives.

Why does the Condolence Coach care about this topic?  The loss of health precipitates significant changes in life. Even persons with disabilities from birth, can experience distress with grief-like emotions. It is stressful to live in a world designed for the 'able', a world that champions strength-speed-beauty. Gaining awareness is always enriching. Instead of not talking about the elephant-in-the-room, we can learn to compassionately co-exist--and support another aspect of human diversity.

Last Fall, I attended a forum, "Disability from the Inside: Conversations with Disabled Metro Detroiters."  It was hosted by photographer Patricia Lay-Dorsey as she neared the close of her Detroit exhibit, Falling Into Place: Self Portraits,  Since that evening, I have had marvelous conversations with many participants.

Meet:

Lawrence Dilworth, Jr. aka 'Leaping Larry'. Retrieving a business card from the pack on his lap, I watch the enthusiasm of his life motto:  Live, Love, Laugh, and Learn. Life is short so enjoy the journey! 

Now 70, Larry never attends a pity party--he is way too busy! Born June 25,1944 with spina bifida, he has used a wheelchair for mobility since 1982. "I call my wheelchair a CHARIOT OF FREEDOM."


Larry continues:  "Living is not an easy ride. I try my best to see the POSITIVE side. I have done more things from a wheelchair than most people walking and never let my so-called "disability" stop me from things I want to do. I have completed 2 marathons, water skied, snow skied, hot air ballooned and skydived. I never know what adventure is next on my life journey." 

Larry destroys stereotypes!

"Photography and art are my passion; as is anything creative or filled with adventure."

Larry has a B.S. degree in Radio and TV Broadcasting from Siena Heights University in Adrian, Michigan. He currently takes art classes at the University of Michigan, Dearborn campus. Larry combines his love of music and photography by attending festivals. "I have photographed the Detroit Jazz Fest for over 25 years."  

Marion Hayden performing at an Ann Arbor Blues Festival
Painting by Lawrence Dilworth, Jr.

A Display of Passion

Larry's work will be displayed in late February, 2015 at Eric's I've Been Framed Shop & Gallery located in Detroit, Michigan. Check back to the shop's link for the announcement!


"I have received The Spirit Of Detroit Award from the Detroit City Council, and photographic awards. I've been featured on local radio and TV shows in Detroit. My photography has been published in The Michigan Chronicle, The Michigan Citizen, The Native Detroiter. As an actor, I have been cast in local independent films and worked in many roles as an extra in Hollywood films and a television series." 

Larry is also a member of WOW, Warriors on Wheels of Metro Detroit. We will meet WOW leaders in the next part of this series.


Life is full of challenges
How we face them
Is what makes us who we are
and
Namaste ("My spirit honors yours.")
Leaping Larry

What can readers take away from meeting Leaping Larry?  

Respect that the people around you are all on a journey, and living with DIF-ABILITIES. Put your judgements and biases on the shelf and get busy facing your own challenges and living your life to its fullest potential.

Readers:  catch up on the other posts in this series!

Thank you for caring!

Tuesday, January 13, 2015

Living with a Disability, Part 2: Getting By or Growing Great?

Together, we are stronger.
Author photo
This post is the second in a series that will explore attitudes and assumptions about disability.
1. People 'on the outside' (having no disability or no visible disability) make a lot of assumptions about disabilities.
2. But people have a disability in the context of  living real lives.

Why does the Condolence Coach care about this topic?  The loss of health precipitates significant changes in life. Even persons with disabilities from birth, can experience distress with grief-like emotions. It is stressful to live in a world designed for the 'able', a world that champions strength-speed-beauty. Gaining awareness is always enriching. Instead of not talking about the elephant-in-the-room, we can learn to compassionately co-exist--and support another aspect of human diversity.

Last Fall, I attended a forum, "Disability from the Inside: Conversations with Disabled Metro Detroiters."  It was hosted by photographer Patricia Lay-Dorsey as she neared the close of her Detroit exhibit, Falling Into Place: Self Portraits,  Since that evening, I have had marvelous conversations with many participants.

Meet Pauline Loewenhardt who recovered from childhood polio, but carries vivid memories of those years. Her memoir first appeared in MICHIGAN POLIO PERSPECTIVES, a publication of the Michigan Polio Network, Inc. 

MY POLIO STORY

By Pauline Loewenhardt

In 1944, when I was ten years old, I contracted polio, an event that would change my life.

Until that summer, I was the oldest of four children and played in the neighborhood with the other kids and watched over my two younger brothers and sister.  My ordinary life and the war were forgotten as I struggled to survive this experience. As a child, I always loved visiting my older half-sister Margots house. She mar- ried at age 17, only a few years after coming to this country.  She lived with her husband, Fred and in- laws Hank and Madelyn Curry, in a modest three bedroom, red-brick Tudor home on Detroit’s northwest side.  I thought it was very grand compared to our smaller and much shabbier rented frame house in the inner city.

On this day, however, I sat disconsolately on the staircase wishing I could go home.  I felt sick and my throat was still very sore from my tonsillectomy a few days before.  I was sent to Margots house to recuperate from my operation but I wanted my Mama. Finally, after I languished without improvement for several more days, Margot called Mama and told her I needed to see the doctorShe told her my temperature was 103 degrees and I couldn’t eat but a few small bites. Finally even that was too painful.  Vernor’s ginger ale, always a treat when I was ill, now burned my throat and I could no longer swallow anything but sips of water.

At last I was home in my small room, in the brown iron bed I shared with my sister, Lucy. I don’t re- member the ride home or who drove me. Probably my father came to pick me up in our old black 1934 Chevy.  Our family doctor, Dr. George Sippola, came to the house.  His tall, thin form loomed over my bed and his deep voice was solemn as he gave my mother a bottle of sulfa pills.  Give her two of these every six hours.”  I could not swallow the enormous pills though I tried.  The bitter taste lingered in my mouth long after I spit out the remains.  Soon I was unable to move my arms and legs and my neck was very stiff when the doctor tried to raise my head from the pillow.

Later that day two men dressed in white carried me out of the house on a stretcher to the waiting ambulance.  I was on my way to Herman Kiefer Hospital for treatment of polio, which by then was raging throughout the country in one of the most severe epidemics of that disease.

I remember the somber faces of my siblings and neighbors as they watched.  I was too sick to be frightened or to realize the gravity of what had happened.  All of that would come much later. I would not return to my home for eight months.

A yellow quarantine sign was placed on the front door of our house and the family was not allowed to go anywhere for two weeks. No one would come near them for a long time.

Generalized fear of polio among the entire population was endemic.  

Children were kept out of swimming pools and movie theaters.  I did not know until later that Margot was pregnant with her first child.  However, she did not contract polio and my nephew, John, was born in November of that year.  He was perfectly healthy.

I was placed in an isolation room so my parents could see me only through a window.  I saw my mother’s tears as she stood there but I didn’t cry.  I remember that I was very hot and I wanted to turn on my side and curl up in a ballInstead, I had to lie perfectly flat with no pillow on a very hard mattress.  My feet were supported by a wooden board that held them upright.  I only cried when they put the needle in my arm twice a day to give me intravenous fluids. I was unable to eat or talk for those first few weeks. My only entertainment was looking out of the window at the sky.  I imagined wonderful creatures in the cloud formations. I felt grateful for the window. I realized only much later that the iron lung next to my bed was there in case I stopped breathing.  Fortunately I did not. However, I disliked being suctioned.

I don’t remember feeling frightened only frustrated at being in bed and subjected to treatments that were not very comfortable.  The treatment for polio was hot wool packs applied to arms, legs, back and chest twice a day.  This treatment, invented by Sister Kenny, was called the Kenny Method.”  The sounds of the wringer washing machines being pushed down the hall announced the beginning of the application of hot moist wool packs. They were applied, then covered with sheets of oilcloth and dry blankets to keep the heat in.  They were left on for 20 to 30 minutes. The washing machines were used to heat and wring out the pieces of wool so they could be placed while still steaming on our limbs.  This prevented contracted muscles from becoming deformed.

The physical therapist came to my bed every day and stretched and exercised my tight muscles. I didn’t like her because she patronized me and wouldn’t answer my many questions.  One day she said to me, “I’ve been working out in the field this morning. You probably think I was out picking flowers.” But I knew exactly what she meant by “working in the fieldand felt insulted by her implication.

At that moment I determined that I would become a nurse so I would have answers to all my questions.

Gradually I recovered some movement and began to sit up and eat.  I choked on a green bean during my first meal and coughed it out so hard that it flew across the room.  I was so happy that I could eat and drink, as I no longer needed the intravenous solutions every day.

Soon it was time for the next stop on this journey. I went by ambulance to Sigma Gamma Convalescent Center in Mt Clemens.  There I continued physical therapy and learned to walk again with the help of a brace and crutches.  My parents and siblings came to visit on weekends.

I was in a large room with other boys and girls and sometimes we played practical jokes on the nurses. Somehow we managed to put a bag of water where it would fall on whoever walked in the door. Someone tall who could walk easily, must have placed it there.  I think it was the janitor who was a jolly fellow who sang to us and told us jokes.  The opera, Figaro, was part of his repertoire.

One evening I got out of bed by myself to get a glass of water.  I was sure I could do it but I slipped in some water and sprained my ankle.  Usually I followed all the rules but I wanted to try. 

Pauline had determination
As polio survivors we were told that if we tried hard enough we could bring back movement in paralyzed muscles.

I was allowed to go home for a Christmas vacation, which was wonderful, but I remember vividly that I was again in an isolation room upon my return. The center was in the country and each night mice skittered and squealed around my room.  They terrorized me and I couldn’t wait to get back with all the other boys and girls.

A teacher came to the center to make sure we kept up our studies.  When I finally went home in March of 1945, I was enrolled in Oakman School in Detroit, a special school for crippled children.  A big yellow school bus picked me up every day. Fortunately, I did not fall behind in my studies through all of this.  I stayed in that school until 8th grade.

In 1945 I had surgery on my left ankle to stabilize it and prevent foot-drop.  After that I no longer wore the left AFO and began to feel more normal though I still walked with a limp.  I was determined not to let the polio stop me from doing whatever I wanted to do. I learned to ride a two wheeled bike sometime in my twelfth year.  I walked a mile to Mackenzie High School when I entered the ninth grade.  I became a reporter on the school newspaper and joined the Future Nurses Club.

Pauline recovers
Vocational rehabilitation paid all the expenses for my four year college education.  I graduated from Mercy College of Detroit in 1955 with my bachelors degree in nursing.  I finally retired from nursing in 2008.  I had a wonderful and challenging career in nursing and never regretted my decision to become a nurse.  I earned a masters degree in nursing in 1973 and worked as a nursing instructor or administrator in later years.

I married in 1957 and had three children. They are now in their late 40’s and 50’s. I have four wonderful grandchildren.  I became an avid gardener.  I learned to downhill ski and eventually, to cross-country ski.  Now I snowshoe when we have enough snow

Those days are becoming rareIn the mid-nineties post-polio syndrome crept up on me

I was still working full time and exercising several times a week. I began having pain and fatigue that just would not go away.  Finally, after a few visits to a polio clinic in Tampa, Florida, where I lived, I was advised that I needed to again wear an AFO on my left leg.

This was a blow but I adjusted to it.  I have learned to manage the fatigue and pain.

Now I am retired but still active.  I wear a DBS brace on my left leg. Dynamicbracingsolutions.com
I learned about this unique brace from an article in the Michigan Polio Network News.  It was and continues to be a learning process. I have had my DBS now for two and a half years.  I use a forearm crutch for walking any distance outdoors or indoors.  I also have a scooter for those occasions when the distance is too great to walk

When traveling by air, I ask for a wheelchair when I make my reservation.  I have found this to be a big help getting through security and to travel the long distances to the gates.  I have relatives in the Netherlands and have traveled to Europe several times. 

My days of walking all over London or Paris are probably over, but there are still many wonderful experiences waiting as I enter my eighty first year.

+++

Pauline Loewenhardt's memoir first appeared in MICHIGAN POLIO PERSPECTIVES, Volume 28, Number 4, Winter 2013. This is a publication of the MICHIGAN POLIO NETWORK, INC.  The Michigan Polio Network, Inc. is a tax Exempt non-profit organization with 501 (c) (3) status. They may be contacted at MICHIGAN POLIO NETWORK, INC.  1156 Avon Manor Road Rochester Hills, MI 48307-5415 olibrarian@michiganpolionetwork.com

After the forum, Disability from the Inside: Conversations with Disabled Metro Detroiters, I had a more in-depth conversation with Pauline. She told me more about post polio syndrome rearing its head in her life in the mid-1990's.

"Before that, I really had no problems and could do just about anything I wanted to do. But I began having symptoms of increased pain, weakness and fatigue. After seeing several different doctors, I was again given a left ankle foot brace (AFO) to wear. I had not worn a brace since age 12."  
Adding to the health stress, Pauline had just ended a sixteen year relationship with her partner and, her beloved fourteen-year old yellow labrador died. "It was all too much," Pauline shared, "and I became very depressed."
Pauline celebrates a milestone

At any age, find your purpose!

Pauline sought supportive help to absorb the changes and decided, at the age of 66, that it was time to retire from a very demanding, full-time nursing job at a Veteran's Hospital in Florida. She returned to Michigan in 2003,  where her two sons and four grandchildren live. Now writing her second memoir, She exemplifies the importance of staying connected and involved with others. 

"I started over as I was celebrating my 70th birthday in January of 2004. It was difficult but I was full of enthusiasm and energy again." 
"The Ann Arbor Unitarian Universalist Church was important in beginning my new life and remains a place of fellowship and compassion for me. The people there are part of my extended family. Several other groups provide similar deep friendships.Writing also has become one of my most important activities. I am working on a memoir and meet weekly with a writer's group. I get up at 6:00 a.m. every morning to write for a couple of hours. Later in the day I don't have energy for writing. I have to carefully manage my time and activities so that I don't run out of energy. The most difficult things to manage are problems in speaking and swallowing as well as mobility issues. The speech and swallowing problems make it difficult to enjoy meals with friends in a noisy restaurant. I choose days and times carefully and can still enjoy meals with friends. I still love to garden and kayak. I nap when I need to do that. I ask for help when necessary."

Pauline is active in a church certification pilot program to develop increased awareness on the part of everyone in the congregation about the needs of persons with various types of disabilities, including those that are visible and invisible.

"Accessibility means elimination of barriers including physical, communication, attitudinal and other barriers and to replace them with attitudes of welcome, support and inclusivity."

"It is a three year project being carried out at ten Unitarian churches across the country. The Ann Arbor UU church is one of the ten. We are just going into the second year. As a result of the increased awareness, the accessibility team will develop strategies and solutions to problems as they are identified."

The first step in the process was an in-depth assessment of all areas of the grounds, buildings and policies related to accessibility. The Field Test Coordinator is Els R. Nieuwenhuijsen, PhD, MPH, OTR/L, an expert in the field of holistic approaches toward disability in communities. 


Follow this link to read Dr. Nieuwenhuijsen's table of Recommended Disability-Related Terminology

Snowy January is upon us. The Coach is wondering how difficult it must be for persons using wheeled mobility, to navigate snowy sidewalks and parking lots. Property owners and managers who think, 'oh it'll melt; I don't want to bother shoveling or plowing,' should spend some time in a wheel chair. Pauline inspires us all to look a our surroundings and consider ways in which they may be unwelcoming to a person with a disability:

"For example, one member of the team suggested installing additional handrails for people going up the three steps to the altar. Currently, if someone cannot walk up three steps unaided, they must walk over to the side where there is now a railing. Various programs have been and will continue to be presented to the congregation, with the goal of enhanced awareness of staff and congregants. The Disability Panel discussion I coordinated last spring is an example of this effort, as is a recent presentation on depression."

 "I am living life to the fullest and I am grateful for all my blessings."


Readers, don't miss past and upcoming posts about Living with a Disability: