The Four A.M. Fears 
 January, 1995
I frequently wake up around 4 a.m. By then, my pain pills have worn off, and various parts of my body ache, cramp,
and twitch. The reality of facing another day of coping with post-polio hits me hard.
Fear is a part of the reality. Losing more strength can be a threat to my ability to even get out of bed in the morning.
Having to ask for more and more help from my family changes my own and their perception of my role in the family.
Losing that very basic identity as a wife and mom causes a feeling close to panic in me. Do I tell my family the truth
about my increasing pain and weakness and thereby take the risk that they will not include me in any of their
activities? They are the ones that have to make the choice to change their plans to include me. My body has become
my dictator -- demanding more and more of my life and excluding me from decisions.
These fearful thoughts race my mind and color my perceptions. It takes all the discipline I can muster to reach out
and grab the only hope I have. The Lord reaches down to me with a loving hand and pulls me out of my four a.m.
despair. He promises to give me rest from my tortured thoughts.
"Come to me, all you who are weary and burdened, and I will give you rest." (Matthew
11:28)
"Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his
compassions never fail. They are new every morning; great is your faithfulness. I say to myself, the Lord is my
portion; therefore I will wait for him." (Lamentations 3:21-24)
I don't know why He is allowing all these changes in my life, and I don't need to know. He has promised . . .
"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)
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After a year-long struggle with increasing pain, fatigue and weakness, I succumbed to my need for a scooter.
Walking down the hill to get the mail and then up again had become impossible. Christmas shopping was a nightmare
and caused me too lose more strength. My husband and I went on vacation in the spring of 1992. Of course, I refused
to ride in a wheelchair in the airport. And when we arrived, I was dismayed to find out that our hotel was so large that
the walk from our room to the pool left me completely exhausted and in pain. When we returned home, my legs were
weaker and I could no longer go to the grocery store.
Desperately wanting to get out of the house, I ordered a scooter. What a feeling of freedom! Once again, I could feel
the wind in my face. It wasn't the same thrill as riding my bicycle down a steep hill, but at least I was outside. And a
friend and I spent many hours riding down logging trails and getting stuck on logs and in ruts. What fun! I once again
felt connected to the human race. The laughter and freedom were back.
However, dealing with being visibly disabled overwhelmed me then and still does at times. Somehow, sitting on a
scooter or wheelchair makes you invisible. Acquaintances avoid making eye contact. Sales persons rarely volunteer
their help. Even close friends do not understand how I can look so normal and yet be so weak. I have lost some
friends. They are just not able to talk about what has happened to me. Somehow, I have become to them not a person
who has roblems but a person who is a problem.
I have learned different coping techniques. Making extra effort to make eye contact and to smile at people lets them
know it is OK for them to talk to me. This works some of the time -- but most people are extremely uncomfortable
around people with disabilities. Redefining my own self worth based not on what I can do but on who I am is essential.
I need to see myself as a worthwhile person. I no longer have the beauty-queen-jock-supermom image, but I do have
a valuable contribution to make. My worth is based on my knowledge of the value the Lord places on me. I am one of
His children and He promises to help me. "For I am the Lord, your God, who takes hold of your right hand and says to
you, do not fear; I will help you." (Ps 41:13) I pray before I back my scooter out of my van that He will help me to
smile and be extra-friendly. And He does help me. I also pray that He will send some special person along side of me
who will feel comfortable talking to me. And that happens quite frequently.
My Coug Mom sticker on the back of my scooter is a conversation starter. And my Polio Outreach sticker lets people
know that I am dealing with something related to polio. Hopefully, they will ask questions. If I am in an especially
nerve-wracking situation -- I will use humor. Sometimes I see myself hopping on my Harley and riding away at a high
speed. Or maybe jumping on a mighty steed and galloping away. My scooter looks great in my mind with a hundred
helium balloons tied on -- and there I go, floating gently upward.
My scooter has opened doors for me that would otherwise be tightly closed. It helps me make the best out of one of
life's most difficult circumstances.
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Will the Real Sharman Collins Please Stand Up?
July, 1995
Dealing with post-polio syndrome forces me to reexamine my definition of who I am. The quality of my day used to
depend on how manny "tasks" I had accomplished. It was a "good" day if the house was clean, a gourmet dinner was
on the table, and there were cookies in the cupboard. I also expected to be able to ride my bike at least 20 miles daily
and lift weights for an hour three times a week. Plus, my grand piano waited for me every day between 4:00 and 5:00.
And, in the evening, I would "watch" TV with my family while I busily knitted sweaters and sewed my own clothing. I
loved being involved with the activities of my athletic husband and four sons. My identity revolved around what I
could do and how well I could do it.
Self-esteem. Quality of life. Buzzwords of the 90's. What happened to my self-esteem and quality of life when all
these "accomplishments" and "activities" were ripped from my life by post-polio? My yardstick by which I measured
my "worth" was broken to pieces.
Wave after wave of agonizing "giving-up" of loved hobbies, sports, and activities left me feeling empty and barren.
Eventually, I found new avenues of expression and productivity. Not based so much on doing, but on being. My faith
that the Lord's plan is to use me in some way to exhibit his strength even in my weakness keeps me reaching out to
grasp what life offers.
Having post-polio, I don't know what new physical problems I am going to have to cope with next. Losing the ability
to ride a bike or to ski is a loss. But, losing the ability to walk, sit-up, stay alert, and breathe sufficiently on one's own
are catastrophic occurrences that demand total dependence on the Lord's control and will. I can trust that He is in
charge and, in some way, He will use my life to serve His purposes. I can still be productive. But, it is His definition of
productive, not society's and not always mine. The Lord knows who the real me is, even when I don't.
"But blessed is the man who trusts in the Lord, whose confidence is in him, He will be like a tree planted by the water
that sends our its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries
in a year of drought and never fails to bear fruit." (Jeremiah 17:7-8)
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He asked, "Mom, what do you miss the most from before, you know, when you didn't have post-polio syndrome?" I
thought for a minute and replied, "Taking care of my family. I miss cooking dinners and baking oatmeal cookies. I
even miss cleaning the bathrooms and sorting laundry."
I didn't appreciate the routine chores of life before post-polio took command. The sweet smell of clean clothes. A
sinkful of suds and dirty dishes. I feel blessed now to be able to put a few dishes in the dishwasher before the pain
takes over and makes me stop. Memories of beautiful vegetables and fruits and aisles of food to choose from elicit
feelings of loss. I haven't been in a grocery store for over two years. My arms and back won't let me lift items from a
shelf to a cart or even to my scooter basket. And my limited energy forbids the luxury of going withsomeone else.
I know I am fortunate to be able to afford household help to do the work I can no longer do. But, friends who
comment how much they would like to tell someone else what to fix for dinner or what part of the house to clean
don't understand that they have a choice. I cannot, no matter how badly I want to, vacuum the rug. And when you
have no choice, it hurts. If I spill a glass of juice and try and clean it up, I know I'll pay for that movement in pain.
Forced dependence on others is humiliating and requires a constant giving-up of pride.
When in junior and senior high school, I thought I was super-clutz. Being the last one picked for teams in softball,
kickball, and volleyball was degrading. I can still feel the churning in my stomach when I think about the
embarrassment. I just did not realize that I was weak from my original polio. I looked so normal. In college, I earned
a "D" in bowling. I couldn't roll that ball down the lane. My brother and cousins waterskied in the summer. I tried and
tried and never did get up on those skiis.
Once my youngest son was in pre-school, I decided it was time to "get in shape." I started with aerobics classes.
Success! An athletic activity I could do! From there, I went on to jogging. When my back started to bother me, I lifted
weights. And I did get strong. Strong enough to ride a bicycle 150 miles a week. Strong enough to ski every weekend
all winter long with my friends and family.
Determination fueled everything I did. My success in these activities made up for all the embarrassment I felt as a
kid. I loved every pedal stroke, every ski run, every thrill and spill of it. And then, crash! My body betrayed me. It
just quit working. And now I miss the fun of all of the movement. The sliding, slipping, flying, freedom of movement.
Speeding down a steep hill on skiis or a bike gave me a heady rush of adrenalin.
If I have learned anything from losing so much, it is to appreciate so much. The sweet smell of flowers in spring. The
crunch of leaves under my scooter wheels in the fall. The sharp cracks of breaking ice over puddles in the winter. The
ever-present affection of my two dogs. The chance to take a slippery ride down a waterslide. The skillful dodging of
pedestrians in the mall on my scooter. Simple pleasures.
My friendships are deeper. They aren't based on shared activities as much as shared beliefs. The Lord has blessed me
with profound spiritual growth and a depth of compassion for others that wasn't there before. Friends value me
because I am "me" and not because of what I can do. Would I want my life to return to exactly the way it was before
my body crashed with post-polio syndrome? I don't t hink so. I didn't appreciate what I had. More importantly, I
didn't know what I lacked.
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Post-polio syndrome creates havoc in my life. My worst times of stress and pain are in the middle of the night, after
my pain and sleeping medication have worn off. In my distress, I call on the Lord for comfort and peace. Psalm 23 is
of great solace to me during my middle of the night sojourn with pain and panic.
"The Lord is my shepherd, I shall not want."
He takes care of me. He meets all my needs--including those for love and security.
"He makes me lie down in green pastures,"
He knows when I need to rest. And He provides a spiritual oasis --a hiding place--where I can rest in peace.
"He leads me beside quiet waters,"
He knows how to calm me. When I am still, I can hear his voice.
"He restores my soul."
He gives me peace and contentment in spite of my difficult circumstances. He fills me with songs of deliverance.
"He guides me in paths of righteousness for His name's sake."
He directs my behavior. He desires to use me to glorify His name.
"Even though I walk in the valley of the shadow of death, I will fear no evil,for you are with me; your rod and your
staff, they comfort me."
No matter how bad my circumstances seem, I need not be afraid, for He is always with me. He guides and disciplines
me.
"You prepare a table before me in the presence of my enemies."
He protects me from unjust criticism and treatment. He anticipates my needs.
"You anoint my head with oil. My cup overflows."
He has marked me as his child and blessed me beyond measure. His loving care is always with me.
"Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever."
He has given me the grace to lead a victorious life for Him and I will be with Him for eternity.
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Making Changes
May, 1997
Over the last six years my life has changed dramatically. My diagnosis of post-polio syndrome in January of 1991
ushered in a time of rapid decline and loss of physical function. From an active and strong, capable mother-of-four, I
slipped down a steep slide of deterioration. By the Spring of 1996, I was becoming increasingly weak and injury
prone. A climb up a few stairs was enough to put me in bed for days with severe pain and fatigue. The walls erected
around my life by my physical limitations crept closer and closer together.
During these years, you have shared with me the story of my post-polio. That story included my adjustment to using a
scooter, Bi-PAP, back brace, the impact on my family and social relationships, and my spiritual search for meaning in
all of this.
At times during the first year of my physical demise, I inched toward severe depression. It was then that the Lord
reached down to me and pulled me up towards Him. I learned that only if I trusted Him completely and gave Him the
reins of my life could I survive. He has enabled me to live with a joy grounded in Him and not in my physical self.
In the summer of 1996, I felt I really had little choice but to try every treatment option available. I traveled to
Futures Unlimited, Inc., in Columbus, Mississippi, in August for a two week treatment developed by Ed Snapp, P.T. As
most of you know, I have experienced a phenomenal return of physical strength and function. I returned to "Futures"
for another course of therapy in February. Once again, the treatment was of great benefit.
The walls around my life imposed by post-polio syndrome are crumbling down. I have been able to resume a much
more "active" lifestyle. Post-polio syndrome continues to dictate the intensity of my activities, but the scope of what
I am able to do has increased dramatically. Cooking, sewing, knitting, walking, swimming, shopping, talking,
sitting--all these activities are mine once again!
What excitement I feel as I walk up and down the aisles of the grocery store deciding what to prepare for dinner!
How thankful I am to be able to perform these "normal" activities. I am able to spend much more time with my
beloved husband and sons and daughters-in-law. And I am looking forward to holding my first grandchild in my
arms--born April 16. My heart bursts with joy and gratitude!
Dealing with other's perceptions of my "normality" is once again difficult now that I no longer have the "props" of
disability. Explanations of muscle weakness and short endurance are not easy for those with little knowledge of
post-polio syndrome to understand. Attempting to live up to other's expectations for my behavior is futile. My choice
of attitude is one of gratitude that I am able to do anything at all. I do not have to let fear of physical loss control me.
How long will this new-found strength and endurance last? I am not in control of that. I can have a sense of peace
because I know that God is in control. He has a plan for my life--and if that plan includes a return to my previous
state of ever-increasing weakness--He will give me the emotional and spiritual strength to accept my circumstance. I
can trust Him to help me to cope with the situation as it arises.
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The End of an Era
June, 1997
My fourth son, Chris, graduated from high school this year. For months, I
have been acutely aware of the approaching end of an era. What fun I have had
over the years being a mom of four energetic and imaginative males. Watching
soccer, football, basketball, baseball, tennis, golf--not to mention snow
skiing, water skiing, marathons, triathlons--never a dull moment in 27 years of
motherhood.
My 21-year career as a baseball mother came to a finale at the State AA
Playoffs in Tacoma several weeks ago. A bleacher with my name engraved on it
would be an appropriate momento. Depressing thoughts of an empty nest have crept
in the last few weeks. Will my home be dull and boring without resident sons?
How will I tolerate the mundane activity of day to day housewifing?
Several nights ago, Rob, my 22-year old son who is home for the summer, came
into my bedroom and said, "Mom, I don't think Zenda should clean my room
tomorrow." Zenda, my housekeeper, does a great job vacuuming around
obstacles on Rob's floor.
"Are you going to clean your room?" I innocently ask.
"No, Beck is loose, " Rob calmly replies.
"WHAT?" I shout. Visions of being strangled by Rob's
five-foot-five-inch boa constrictor, Beck, spring into my head.
"I was holding Beck on my lap and he found a hole in the chair and ---whooosh---he
is up inside the rocking chair," Rob related. "And, he won't come
out."
My face growing pale, I shout, "You can't leave for work tomorrow with
that snake loose! He'll strangle Bud and Gigi (the resident toy poodles) and
then come after me!"
"Calm down, Mom. Beck's a nice snake. Besides he ate two rats last week
and he is full. I'm going to bed now," Rob said.
"I'll come and help you get him out!" I leap out of bed and hurry
upstairs behind a disgruntled Rob. We spend the next hour up in his room. Rob
pulls on Beck's tail, I yell encouragement. Beck does not budge. Sweat starts to
drip from Rob's brow. It's now late and I'm tired of watching Rob tug on Beck.
"You aren't going to sleep in the same room with that chair, are
you?"
"Goodnight, Mom," Rob says in an exaggerated end-of-his-patience
voice. "I'll carry the chair over to Ken and Brian's vacant room, if that
will make you feel better."
I went to bed, nervously chuckling to myself. And I thought life would get
dull? Not as long as my boys are back around here at all! And next year my
grandson will start the cycle all over again. Worms in pockets, gerbils running
around the house, snakes in rocking chairs!
About 2 a.m., I woke up with visions of the new movie, ANACONDA, on my mind.
I poke Ken and ask, "Where do you think that snake is?" I was looking
for reassurance.
"That snake is probably slinking around inside the walls now looking
for a poodle to squeeze! We'll never get him out!" he grunted. That was not
the answer I was fishing for. Sleepless, I tried to plan how I would save the
dogs or myself from Beck. Did I need a knife? Would 911 be the answer?
At 6:00 a.m. Rob came into my room. I woke up long enough to shout,
"Where is that snake!?"
"Mom, don 't worry. I shut the rocking chair with Beck in it in the
upstairs bathroom. He won't go any further than the bathtub!"
I tiptoed around all day, occasionally checking the space under the bathroom
door. No sign of a prowling snake. When Rob came home, he went upstairs to check
on Beck. Shortly he came down with the remnants of a rocking chair. "Beck
is safe and sound in his cage," said a relieved Rob. "Of course, I had
to cut the chair apart."
I offered to put an ad in the newspaper, contact Woodland Zoo, or call
Northwest Seed and Pet. "Mom, would you sell Bud or Gigi?" he asked,
batting his blue eyes at me.
"No, but Bud and Gigi wouldn't eat me!" I retort.
"Beck likes me and he is a great pet," he answers, "and, Beck
and I will go back to school soon."
Dull? I don't think so. In six years, I'll be back on that baseball field,
watching my grandson, Kenny, play T-ball. And maybe I'll send him home with his
worm collection in his pocket.
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POSITIVE APPROACH TO BETTER HEALTH
September, 1997
Since I was diagnosed with PPS in January of 1991, I have learned a lot about how to approach health problems.
When dealing with a disease such as post-polio syndrome, I feel it is a necessity to formulate your own "battle plan."
I hope that sharing my plan will help you find ideas you can use. Your attitude is crucial.
FAITH - Faith that God is in control of my life is the cornerstone of my attitude. My body is subject to various
diseases, injuries and assaults. God gives me the initiative and common sense I need to explore different treatment
options. Ultimately, I know that the Lord will provide me with the emotional strength to withstand any circumstance
that He allows in my life. But He does expect me to use the brain power He has provided me to improve my physical
condition.
GATHERING RESOURCES - It is essential that you educate yourself about post-polio syndrome. Read the available
literature--but do not accept the opinion that there is nothing that can be done to improve your condition. There is
usually something that can be done. I believe that a sympathetic and compassionate physician is an essential asset to
your health plan. He or she must be willing to listen and try new and different treatment options. Newsletters from
other support groups are fantastic resources for new treatments. New York Post-Polio Connections and PPASS are
among the best. Following are the treatment options that have helped me the most over the last six years.
FUTURES UNLIMITED, INC. - I went to Futures Unlimited, Inc., in August of 1996 and also in February of 1997.
Since being evaluated and treated by Ed Snapp, P.T., I have regained a phenomenal amount of strength and function.
My improvement in muscle strength and endurance has been steady over the last year. Futures Unlimited, Inc., offers
treatment that is the closest thing to a cure that is available to us.
MASSAGE THERAPY - Frequent massage keeps muscles moving. My therapist, Nancy Lee, works on me two to
three times a week. Increased circulation, reduced pain and muscle cramping, and decreased muscle tightness are a
few of the many benefits of massage.
PHYSICAL THERAPY - My physical therapist, Bob Paull, identifies problem areas where I have muscle imbalances.
He helps me with strengthening and/or stretching exercises, posture and gait control.
DIET - I carefully watch what I consume. Extra pounds translates to extra effort for weak muscles. A nutritionist can
be a valuable resource. Two books on nutrition that have been beneficial to me are THE ZONE, and MASTERING
THE ZONE by Barry Sears, Ph.D.
SUPPLEMENTS - Products that enhance cell function seem to be most promising. Mannetech
Phytochemicals--especially their Plus and Mannaloe-- have helped me. Glucosamine and chondroitin sulfate has
reduced my joint pain and stiffness. Tahitian Noni Juice is believed by some to help central nervous system function
and has definitely improved my digestion. I find that Shaklee vitamins are easy for me to digest.
EXERCISE - Since my treatment at Futures, I am able to swim three times a week for 23 minutes. Plus, I am able to
do 30 minutes of prescribed stretching and strengthening exercises daily. That is a 100% increase over a year ago.
DRUGS - Pain medications that are commonly prescribed for persons with post-polio have not worked well for me. I
took prescription anti-inflammatories for two years and had severe digestive problems. I now take just small doses of
ibuprofen for pain. Six years ago I began to take Eldepryl and I feel I continue to benefit from it.
FAILURE - Many of the treatments I have tried have not helped. I took part in a two-year program of electrical
stimulation in Toronto, Canada, which seemed to be of very little benefit to me. I went to a chemist who attempted to
"balance" my blood chemistry and thus improve my health. That made me very ill. I have tried Mestinon--and had an
allergic reaction to it. My attempts at exercise before I went to Futures Unlimited caused me increased weakness.
Some of these options, however, may help you. Keep your mind open and optimistic. You won't find any help if you let
an attitude of complacency or fear of failure guide your behavior. Actively seek improvement.
If anyone has any questions about any of my ideas, please contact me. And I would love to hear from you about
different treatments you have tried. Write a letter to the editor in care of LINK if you have ideas to share. Has
anyone tried acupuncture? Or blue-green algae? Bio-magnets?
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MY QUALITY OF LIFE
July, 1998
One day last January I went cross-country skiing. It was a beautiful, sparkly winter day. What a thrill! Muscles, obeying my
command to alternately contract, then extend, propelled me forward in a smooth gliding, stretching motion. My heartbeat
accelerated as much from excitement as exertion. Beads of sweat popped up on my forehead. Sounds peculiar to the
experience-crinkle crunch of outerwear, scraping, sliding sound of skiis against snow, the stillness of lightly falling
flakes-magnified the wonder of it all. I closed my eyes and absorbed every sound and sensation.
My memory took me back to a ski trip in January 1991. My weekly ski trip to the trails at Mt. Spokane with a dear friend
was coming to disappointing close. My right leg was feeling peculiarly weak and the muscles were cramping. Two weeks
later, I was at the top of a difficult run at Schweitzer Mountain Ski Resort. My right leg was shaking in a frightening manner.
I hurried down the hill and went to the lodge. My right arm was also shaking and weak and the cup of coffee I carried to the
table felt heavy. I was filled with an ominous dread. One month later, on a day that is burned into my memory, I was told I
had post-polio syndrome.
Two years later in 1993, I was an experienced scooter driver and needed to use a Bi-Pap ventilator to augment my
breathing. By the spring of 1996, my strength had decreased significantly. Barely able to walk more than twenty feet, I relied
on my scooter more and more. My full-torso rigid back brace held me upright as my muscles had given out. My Bi-Pap was
indeed a constant companion for 11 out of the 24 hours of the day.
It was during this time of rapidly decreasing strength that I felt compelled to contact Ed Snapp at Futures Unlimited, Inc.*
Attentive and encouraging on the phone, he felt he could help me. I contacted several patients he had treated, and they all
gave positive reports of increased strength. After much prayer, I made all the necessary plans for the two-week treatment
program. That was two years ago - August of 1996.
As most of you are aware, I have made miraculous progress in the last two years. My nerves are communicating correct
messages again and I have been able to gain strength. I only use my scooter to take my dogs for long walks. No more brace,
no more Bi-pap. My afternoon nap is down to one hour. Previously, I needed to employ a housekeeper for 40 hours a week
as I was unable to do anything physical for my family. I now do all the cooking, the shopping and some of the housework. I
am able to take care of my 14-month old grandson for half a day several times a week. I am back at the sewing machine and
loving every minute of it! I am able to be more of a companion for my husband. Ken and I went to a dental society dinner
dance and I whirled and twirled around the floor for about 30 minutes. What a delight! My post-polio is still there, but it
doesn't dominate my every moving moment. The mental fatigue which dulled my brain is no longer there. And the feeling of
running out of breath when I talk is not nearly the overwhelming
problem it once was.
During all the dramatic and catastrophic changes in my body, I went on a spiritual search. In the beginning, I desperately
needed to meet others experiencing the same problems hoping someone else would have the answers on how to cope. At that
time, my definition of "quality of life" meant living up to very high standards for personal performance in whatever I did.
Whether it was cooking, mothering, staying physically fit and trim, managing my household of four sons and a husband,
volunteering for different groups such as PTA and La Leche League, sewing, knitting, playing the piano, riding my bike,
skiing, I wanted to be good at it. And when I lost the ability to perform, I was devastated. And, eventually losing even the
"basic" human abilities that one takes for granted, such as walking, sitting, and breathing left me stripped of what I felt
"quality of life" was all about.
But I did find out the truth. I met Jesus Christ on my long journey of loss. And now His definition of "quality of life" is mine.
He loves me no matter what physical shape I am in. Whether I am flat on my back unable to breathe on my own or whether I
am out on the dance floor with my husband, Christ loves me. He gives me my sense of importance and worth. He can use me
for His purposes which were, are, and always will be more important than my own.
Now that I am physically so much better, friends ask me what it is like to have my "quality of life" back. The question makes
me cringe even though I know the thought patterns it springs from. It is so much fun to be able to do things. My sense of
accomplishment at a task completed is so rewarding. I am able to appreciate all the supposedly mundane activities of life
much more now that I have regained the ability to perform them. But, physical efforts and accomplishments do not equal
"quality of life." Only a personal relationship with Christ can give me that deep inside sense of fulfillment and peace. He
alone gives me the strength to be content in any circumstances. When I truly trust Him with my life, I can with confidence
answer any question about "quality of life."
_______________________
* Futures Unlimited Inc. is located in Columbus, Mississippi. Phone
(662) 327-7333
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PRESSING ON
August, 2000
Last night, Ken and I went to dinner at the Riverside Steak House on Pend
Oreille River in Priest River, Idaho. It's a "down-home" kind of
restaurant. You can wear anything you want-- swimming suits to shorts to Sunday
best. We drove the boat down the river, tied up to the dock, and climbed the
stairs up to the restaurant. Whenever I climb stairs now, I breathe out a “thank
God I can climb stairs.” I remember all too well what physical state I was in
four short years ago.
After dinner, we turned the corner to go down the stairs to the boat dock and
I said to Ken, "I almost turned the other way to walk to the car in the
parking lot!" And he said, "I'm just glad you are walking
anywhere." My husband is not the sentimental type. His comment touched my
heart. I am so grateful to have enough strength to be more of an active partner
to my husband and to be able to take part in more family activities. I was so
tied to my bed, my respirator, and my scooter before I went to Futures
Unlimited. The Lord gave me the emotional strength and comfort I needed to keep
on persevering when I was too weak to do much but peck at my computer. But I am
so grateful for the mercy He has extended to me. He revealed the treatment at
Futures Unlimited at just the right time.
The Lord has used the difficulties I have encountered in the last ten years
to accomplish a lot of good in my life. My loss of physical ability sent me on a
spiritual journey that led me to a life-changing personal relationship with
Jesus Christ. He has put a compassionate heart in me for others suffering from
physical loss. And, I know without a doubt, that He will comfort and sustain me
in any future loss I may have. He is sovereign and so lovingly compassionate.
Now that I no longer carry the trappings of disability on my person - scooter
and back brace – I once again cope with expectations of others who assume I
must be normal. For example, if I am able to ski three runs down Schweitzer
Mountain, why can't I carry my ski boots to the car afterwards? And, if I am
able to pick up my 15 lb. grandchild, why can't I baby sit for the day? My body
is like the Energizer Bunny. I look the same even though my battery runs down.
And I don't keep going and going and going. I have to be careful to alternate
activities such as lifting, walking, and sitting.
Every afternoon I rest for about an hour. Several days a week I swim or walk
for twenty minutes. I use my scooter to take the dogs for a walk if I am tired.
Ken's alarm clock wakes us up at 5:15 a.m. every day he works so we go to bed
very early. I feel the best if I am off my feet by about 8:00 p.m.
Having an invisible disability often results in other people misunderstanding
my motives. Sometimes the people closest to me forget that I don't participate
in certain activities because of my lack of energy and endurance. They
mistakenly assume I don't want to take part in that activity. My husband and
sons frequently play golf in the evenings. I am too tired in the evenings to go
along even to watch. Many nights I prepare gourmet dinners by myself but need
help to clean up because I grow too fatigued to remain on my legs. It's
difficult to be misunderstood and humiliating to try to explain that I am once
again too tired to do something. And, some explanations are impossible for a
"normal" person to understand. If I try to explain that I am too tired
to sit up any longer, I get blank  looks
that reveal a total lack of comprehension.
I have arrived at the conclusion that it is best to give up my need to be
understood. Real security and understanding can only be found in my relationship
with my Creator. He knows what I am experiencing at any time and He alone can
comfort me in any disappointment over my lack of ability. "Do not be
anxious about anything, but in everything, by prayer and petition, with
thanksgiving, present your requests to God. And the peace of God, which
transcends all understanding, will guard your hearts and your minds in Christ
Jesus." (Philippians 4:6-7)
List of Sharman's stories
|| Main Index, "Our
Own Stories"
How
I Found Peace
May, 2001
On Easter Sunday at her church, Sharman was asked to
speak to the congregation about how she came to have faith in Jesus Christ.
Since the reason has to do with her post-polio syndrome, you may be
interested in what she said.
In January of 1991, I was diagnosed with post-polio syndrome. I had polio as
a small child and except for residual weakness led a fairly normal life. Then at
age 42 I began to experience PPS symptoms. Within six months, I had lost about
90% of my overall physical strength. I had gone from a very active person who
participated in cycling, skiing, and jogging with my husband and four sons to
someone who could not walk a block or lift more than a few pounds. I was no
longer able to do any household chores, shop for groceries or cook. I was in
constant pain. I spent more time in bed than out. It was terrifying to be able
to feel one nerve after another in distress and then quit functioning. I felt my
family would be better off without me. I felt like I had become useless to them
and to everyone else. At first, I decided I would be able to think my way out of
this. I read every positive-thinking book I could find--I joined a New Age
Meditation group. I envisioned nerves growing back. Nothing worked. I became
extremely depressed.
That Autumn the Lord sent someone special to the Polio Outreach Support Group
meeting. Elinor Young, a missionary who had been in Irian Jaya, Indonesia for 18
years, was also suffering from the onset of post-polio syndrome. She had to
leave Indonesia and return to Spokane. She came to my support group meeting. She
told the group that while she was experiencing deep grief at the loss of her
ability to function, she was able to have peace and joy because of her faith in
God. I was dumbfounded. How could this be? As I got to know Elinor and watched
her life, I knew I wanted what she had-- that relationship with Jesus Christ. I
knew I was a sinner in desperate need of a Savior. I asked Jesus to come into my
heart in May of 1992. Only Jesus could give me that love, acceptance, and
forgiveness I needed when I had become so worthless in my own and the world's
eyes.
The Lord taught me how to accept my physical limitations. I continued to
weaken physically and spent four years using an electric scooter to get around,
three years using a ventilator for breathing support for 12 out of every 24
hours, and wore a rigid full body brace to hold me upright when I was out of
bed.
I learned that I had to give up my will for my life and totally depend on Him
and His will for me. He taught me that I had value and worth in His eyes
regardless of my lack of abilities. And that He would continue to comfort me and
give me that peace and joy that I saw in my friend Elinor-- no matter how bad my
circumstances became. Even if I ended up in a nursing home, the Lord would bring
someone near me who needed to hear about Him. He would be with me always.
Then in the summer of 1996 the Lord led me to a clinic where I was able to
get effective medical treatment.* He has restored a large percentage of my
physical strength in the last five years.
The Lord has provided me with a platform to tell others with post-polio
syndrome about treatment that is available--and most importantly--about my
life-changing relationship with His son Jesus Christ. And He has blessed me
indeed-- last October, my beloved husband of 32 years accepted Jesus Christ as
his Savior.
The Lord has done a mighty work in my life. His hand has been on me.
*Futures Unlimited, Inc. in Columbus, MS
List of Sharman's stories
|| Main Index, "Our
Own Stories"
Who
 Is In Charge
Here Anyway?
November, 2002
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.
Sharman contracted polio at age four in 1952. She and her husband of
30+ years, Ken, have four sons, all married; two in graduate school. They are also proud grandparents of
one boy and three girls. Sharman's post-polio began in early 1991 with a very
rapid decline. She started the support group, Polio Outreach of Spokane that year. Before PPS,
Sharman loved to sew, knit, do gourmet cooking, ski and ride racing bikes. At the worst of her PPS, she
could do none of those. However, thanks to treatments at Futures Unlimited, Inc., Sharman is now
walking, sewing, knitting and cooking again. Winter '98/'99 marked her first time skiing again in seven
years, though she has since wisely "retired" from that. Sharman is a writer for the P.E.N. & ink newsletter.
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