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Inspiration, news and knowledge from Polio Experience Network
No. 43: Winter 2002-2003
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In
This Issue:
"But They LOOK
So Good"
by Sherri L. Connell
Update from
Northwest Futures Unlimited
Beatitudes
for Friends of People with Disabilities
Who Is In Charge
Here Anyway?
by Sharman Collins
Web Finds
The P.E.N. &
ink
P.O.S. Library
Our Offer (for a mailed subscription)
Copyright information
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(For information about up-coming meetings of Polio Outreach of
Spokane, see the POS Webpage.)
Feature
Article:
This
article contains excerpts from:
“But
You LOOK Good:
A
Guide to Understanding and Encouraging People
with
Chronic, Debilitating Illness and Pain!”
But
They LOOK So Good!
-The
Paradox of Looking Good, but Feeling Bad-
Written
by Sherri L. Connell, BA
Copyright
© 2002
The
Invisible Disabilities Advocate
www.InvisibleDisabilities.com
 urprisingly,
more than 125 million Americans have at least one chronic condition.
Nearly half have more than one. An illness or injury is considered
chronic, when it lasts a year or longer, limits activity and may require
ongoing care.
Not everyone with a
chronic illness has the same symptoms or degree of symptoms. Some
have mild complications and with a little adjustment in their diets or
schedules, they can lead a pretty “normal” life. Some have to make
bigger changes, sacrificing various activities or their work situations
in order to contend with their conditions. Others
become so ill they are unable to work
at all and struggle
just to meet life’s daily needs.
Just about every
one of us has experienced being so sick we had to stay home from work or
school, because we were too sick to go. We hate being sick, because the
time ticks by, the work piles up and we cannot do anything about it. We
gripe and moan that we “don’t have time to be sick!” even when it
has only been a few hours. It is just plain miserable to be sick, in
pain and debilitated - nobody enjoys it.
Often when we come
across someone who says they have been sick and in pain for a long time,
we might think they are either exaggerating or they are not doing
something about it. After all, when we got sick, we got some rest,
took some medication and were soon back on our feet. Moreover, when we
were sick, we were pale and droopy, but they often look “perfectly
normal.”
The truth is, most
chronic conditions cannot be seen with the naked eye, but nevertheless
are persistently keeping the person from enjoying life the way they once
knew. For instance, a person can battle extreme fatigue, even
though they may appear healthy and well. Just the same, a
person can have spinal damage and excruciating pain, despite the
fact that to the onlooker they may look strong and able.
The biggest
grievance those with chronic conditions have is that their loved ones
often do not believe what they are going through is real,
because to others they “look good.” Sadly, this makes the
person feel as if they are being called a liar or a wimp.
This can cause great strains on relationships between friends, family
members and spouses. Ironically, those with chronic conditions would
like nothing more than to gain complete control of their lives and not
have to adjust to any limitations at all! Nonetheless, their bodies do
not always cooperate with their desires, no matter how much they want
it to.
Regrettably, a travesty
occurs when the person not only has to contend with no longer being able
to do what they love to do, but also has to battle for
their loved one's belief, respect and understanding. While
the person with the illness/pain is mourning their loss of ability
and freedom, others often accuse them of just being lazy
or malingering.
We must resist the temptation to make
a visual diagnosis by coming to the conclusion that our loved one
must be embellishing their situation or trying to pull the
wool over our eyes, because to us they “look fine.” After
all, when we rebut what they are telling us with, "But you LOOK
good," our friend really hears, "But, I don’t believe
you, because I can’t see it."
Frankly,
it is impossible for us to be compassionate, until we have acknowledged
there is a situation for which to be compassionate! In other
words, how can we say, “I am sorry you are sick,” when we are
always saying, “I do not believe you are sick, because you
don’t look sick?”
People with chronic conditions do not
want to give up! They make efforts to laugh, smile, look their best and
enjoy life, even though they know they will pay dearly for it. Because
of this, we should not confuse their endeavors to live life and be
positive, with assuming they are feeling well or doing
better. Instead, let us commend them for their incredible courage,
perseverance and persistence that make their painful
disabilities seem invisible to us.
*****
"But
They LOOK So Good," contains
excerpts from Part 1 of
the 44
page booklet, "But You LOOK Good: A Guide to Understanding and
Encouraging People with Chronic, Debilitating Illness and Pain!" To
order this booklet, please send $3.75
each (includes postage from the US, discounts available
for 3 or more). Make the
check payable to W. Connell and send to: IDA 41553 Madrid Dr. Parker, CO
80138 USA. Or visit
IDA's website for links,
articles, support and booklet information:
www.InvisibleDisabilities.com!
Used
by permission. The article which appeared in the print addition of
P.E.N. & ink
is more complete and may be found at http://www.invisibledisabilities.com/lookgood.htm
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***The information
given in this newsletter is not meant to be medical, financial or legal
advice and is not given by a medical or legal professional. We recommend that
you seek appropriate professional counsel regarding any concerns.***
UPDATE
FROM NORTHWEST FUTURES UNLIMITED
NW Futures Unlimited has been treating clients at their
clinic on 1315 N. Division for nearly a year. People from Washington, Idaho,
Oregon, California, Missouri, Massachusetts, and South Dakota have taken
advantage of the cutting-edge treatment available here in Spokane. Some of the
illnesses, injuries, and conditions of the central nervous system that are being
successfully treated are post-polio syndrome, multiple sclerosis, head and
spinal cord injuries, cerebral palsy, stroke, and developmental disorders. About
50% of the clients treated thus far have post-polio syndrome. James Snapp, the
Administrator of the clinic, says approximately 90% of the clients have seen
measurable improvement in their condition.
The clinic provides two two-week sessions of treatment per month. The methods
used are applications of hydrotherapy, massage, sensory stimulation, and
exercises. The sequences, methods, organization, and integration of applications
are critical to success. The treatment was developed by Ed Snapp, P.T., of
Futures Unlimited, Inc., in Columbus, Mississippi. The staff at NW Futures is
headed by James Snapp, Administrator, Jennifer Bach, P.T., and Leonard Norfleet,
P.T. Jessica Touchstone, Jenny Caston, James Tennyson, and Amanda Tupper are
safety aides. Jessica Hall is the Director of Chronologically Controlled
Developmental Education. All the members of the staff work together to provide
comprehensive treatment for the clients.
James Snapp feels encouraged that so many people are taking advantage of the
treatment this first year of business. The results have been outstanding. The
staff is excited about this first anniversary and looks forward to serving
people in the Inland Northwest indefinitely. All major credit cards are accepted
for payment. Most major insurance companies are paying a large percentage of
treatment costs. Group Health is showing interest in the clinic and in January
is sending a trial post-polio syndrome patient through the program to test the
validity of the results for future Group Health clients and payment acceptance.
The Department of Social and Health Services is currently reviewing the
treatment program for possible use in conjunction with their vocational
rehabilitation services. Medicare has recently approved the treatment for their
clients. A Care Credit Payment Plan is also in place for your convenience. If
you would like more information about payment and billing, contact Fran at
326-7577. Let her know if you need to see Dr. Karen Stanek, Physiatrist, for a
referral for treatment.
You may acquire more information at Futures Unlimited website, futuresunlimited.com.*
Feel free to contact James Snapp.
If you have questions concerning treatment, he will answer them for you.
________________________
*Also see the Futures pages on P.E.N.'s Webnet: "Futures"
and articles by Ed Snapp
Beatitudes for
Friends of People With Disabilities
Blessed are you who walk with us in public places and ignore the stares
of strangers, for in your companionship we find havens of relaxation.
Blessed are you that never bid us "hurry up" and more blessed
are you that do not snatch our tasks from our hands to do them for us, for often
we need time rather than help.
Blessed are you who stand beside us as we enter new ventures, for our
failures will be outweighed by times we surprise ourselves and you.
Blessed are you who ask for our help, for our greatest need is to be
needed.
Blessed are you when by all these things you assure us that the thing
that makes us individuals is not our peculiar muscles, nor our wounded nervous
system, but is the God-given self that no infirmity can confine.
Blessed are those who realize that I am human and don't expect me to be
saintly just because I am disabled.
Blessed are those who pick things up without being asked.
Blessed are those who understand that sometimes I am weak and not just
lazy.
Blessed are those who forget my disability of the body and see the shape
of my soul.
Blessed are those who see me as a whole person, unique and complete, and
not as a "half" and one of God's mistakes.
Blessed are those who love me just as I am without wondering what I might
have been like.
Blessed are my friends on whom I depend, for they are the substance and
joy of my life!!!!
By Marjorie Chappell. From: Laughter, Silence & Shouting: an
anthology of Women's Prayers , ed. Kathy Keay. Harper SanFrancisco, 1994
WEB FINDS
This issue’s feature article intends to help families and friends
understand some of the invisible, debilitating factors of chronic illness. Check
out these other helpful resources:
“Nana Needs A Nap,” a new book you can order at www.nananeedsanap.com.
“You will be delighted by the amusing and distinctive illustrations in
this book as the author discusses her true story and some of the symptoms of
Post - Polio syndrome. This coffee table book is told from the perspective of
a grandchild and can be understood and enjoyed by young and old alike.”
“Caring For Your Wife in Sickness and in Health,” written
by Richard Dominguez, M.D., a sports medicine doctor. Get it at a discount at www.restministries.org/comfortzone/itm00196.htm
__________________
Have you ever wondered
about the state of polio survivors in other parts of the world? Read a very
interesting personal story, “Peru’s Polio Survivors,”
by Marilu Montero
Grana of Lima, Peru. Marilu is a polio survivor whose mother founded the only
polio hospital in South America that provided everything from surgery,
rehabilitation, braces, and crutches to school and clothing for all the
low-income polio children who came. You can find the story at www.post-polio.org/ipn/pnn18-2.html#peru.
Letters from our postal and Website
readers.
--
“I really look forward to receiving P.E.N. & iNk. I am
happy to learn that N.W. Futures Unlimited is now in Spokane. Best wishes.”
-H.H.
“I hope you will continue and wish all the wonderful helps you talk about
were closer.” - J.
Is there anyone out there who has PPS and also Non-Hodgskins Lymphoma and
who has undergone treatment with the antibody Ritaxan? If so please contact
Helen at (509) 659-0509 or e-mail bevscherr@hotmail.com
Who
Is In Charge
Here Anyway?
by Sharman Collins
It didn't take long after I was diagnosed with post-polio syndrome in
January of 1991 for me to realize I was not in charge of what was happening in
my body. No matter how badly I wanted to be my "old-self" --full of
seemingly endless energy and enthusiasm and ability--I could not escape from
the heavy grip of post-polio syndrome. Every single remaining hour and day of
my life would have to involve an evaluation of current energy, strength, and
endurance. While I am so much better than I was before I went to Futures
Unlimited, Inc., for treatment, I still can not escape from my damaged central
nervous system.
One of the most frustrating aspects of my chronic disability is that it is
invisible to others. It is difficult to explain my limitations to anyone
without appearing that I am making excuses or looking for sympathy. I
frequently feel that others mistake my physical limitations for attitude
problems. For example, if I leave a party early, it is because I am exhausted,
not because I am anti-social. If I am able to climb stairs in the morning but
not in the afternoon, it is because my nerves are too fatigued to send the
right messages to my muscles, not because I am lazy. If I don't pick up the
baby, it is because my back is too weak to maintain the muscle contraction
needed, not because I do not love the baby.
I have decided that I need different words and phrases to communicate at
all. Instead of saying, "I am tired," it would be much more accurate
for me to say "I am ready to collapse." If I say, "I am
cold," I actually mean "my muscles and bones feel painfully cold and
are becoming more difficult to move." Most people have not read the
medical literature about post-polio syndrome and even if they did would not
realize the scope of the problem. They cannot "see" my breathing
problems, my blurry vision, or my ringing ears when I have tried to do too
much. The idea of being too fatigued to sit up or talk or walk any longer is
too foreign to them.
Another very difficult problem to cope with is having to give up my
lifelong expectations of my roles in life. My mother has just begun to have
serious health problems. My expectations of what I "should" do in
the position of daughter do not at all meet with my physical ability. I am not
able to help with my grandchildren the way I always pictured that role in my
mind. Grandmothers are "supposed" to be able to help with and
generally be available to take care of and enjoy grandchildren. I have to be
satisfied with short visits with them to avoid the physical, emotional, and
mental fatigue that sets in rapidly when I am around too much noise, activity,
and confusion. Damaged nerves react in peculiar ways that make little sense to
those who do not personally experience them.
What helps me the most is that I know that the Lord is in charge. He has
put me in my current circumstances. He is the only one who truly understands
my difficulty and frustration and provides the comfort I need. His word says,
"Praise be to the God and Father of our Lord Jesus Christ, the Father of
compassion and the God of all comfort, who comforts us in all our troubles, so
that we can comfort those in any trouble with the comfort we ourselves have
received from God." (2 Corinthians 1:3-4) "And we know that in all
things God works for the good of those who love him, who have been called
according to his purpose." (Romans 8:28) He does have a purpose for my
ongoing difficulties. He will use them for His glory in the grand scheme He
has for my life. "For I know the plans I have for you," declares the
Lord," plans to prosper you and not to harm you, plans to give you a hope
and a future." (Jeremiah 29:11) Knowing the promises that He has made to
me give me comfort and peace in my circumstances.
Polio Outreach of Spokane Library
Your resource for information on post-polio syndrome and disability issues.
P.O.S. maintains a large
library of information on post-polio syndrome and disability issues.
The material is available by
contacting our librarian, Darlene Hansen by phone at (509) 238-4512 or by E-mail
at darleneh@cet.com
Some material is also available
on our web-site at www.polionet.org/library.htm
and back issues of “P.E.N.
& ink” at www.polionet.org/pen&ink.htm
Our Offer:
If you want to receive PEN & ink by normal mail, send a request
with your mailing address to:
P.E.N.
S. 508 Shoreline Drive
Liberty Lake, WA 99019
We would appreciate a donation for printing and mailing costs,
if you are able to do so. We have no source of funding other than our readers.
P.E.N. & ink,
On the Web and mailed world-wide to provide experience based advice and emotional support for Polio survivors,
families and friends.
Mailing address. . . 508 Shoreline Dr., Liberty Lake, WA 99019 U.S.A.
Copyright ©
2002, Polio Experience Network (P.E.N. & ink).
Original materials by P.E.N. writers* may be reprinted
in other newsletters as long as proper credit is given. Please send a complimentary copy of the publication to Polio
Experience Network, 508 Shoreline Dr., Liberty Lake, WA 99019 U.S.A.
*P.E.N. writers are Sharman Collins, Dave Graham,
Elinor Young and others not otherwise attributed to another source.