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| Unconditional Blooms! Author Image |
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.
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 Margot’s
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 Margot’s
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 doctor. She 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
ball. Instead, 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
field” and 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.
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| 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.
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| 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
rare.
In 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 or librarian@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."
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| 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:
Living with a Disability, Part 1: Debunking Stereotypes
Living with a Disability, Part 3: Enjoy Your Journey
Thank you for caring!
Living with a Disability, Part 3: Enjoy Your Journey
Thank you for caring!
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