In This Issue:
Sharman’s News, Sharman Collins
“Heroes” by Elinor Young
Linda’s Lines
“About Polio: A Specialist’s Note” by Jacqueline Perry, MD
“My Best Advocate” by Dave Graham
Inspiration — “I Searched and Found” by Sharman Collins
A book review by Sylvia Smith. — Of Myths and Chicken Feet, A Polio Survivor Looks at Survival. By Nancy Baldwin Carter
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Sharman’s News
HAPPY HOLIDAYS! This is the busiest time of year for everyone. When you have very little energy to spare, you need to learn how to budget it wisely. Making that pie this morning may mean you are too tired to move this afternoon. It has been very difficult giving up my image of what a “good mother” and “good wife” does. It is more important t spend time with your family, however, than to do things for them.
…..On November 22nd we will be meeting for the first time at the Shriner’s Hospital. We hope this will be a more convenient place for the support group to meet. The parking is free and the conference room is easier to find! The cafeteria is open until 5:30 for those of you who like to get together for dinner. Our meeting will start at 6:30.
…..Our guest speaker Dr. Brenna Beedle will be continuing our discussion on assertive communication techniques. Dr. Beedle is a professor in the Applied Psychology Department at EWU.
…..We will be having our Christmas luncheon on December at Ripples Restaurant in Cavanaugh’s River Inn at 11:30 AM. There will be no support group meeting in the month of December. We will meet on January 24, 1995!
–by Sharman Collins
Heroes
By Elinor Young
“Tennessee Polio Heroes,” one Post-Polio organization calls itself. That’s intriguing. Isn’t it presumptuous to call ones-self a hero? Why would this group risk such bad cultural manners? Maybe the hero identity is fighting for life.
You know what I mean. We who had Polio have similar “hero” stories of fighting back and blending in with the rest of productive society.
I contracted a life-threatening case of Polio as a five-year old. Arms, legs, neck, lungs, trunk — nothing was left unaffected, yet over the years I regained an amazing amount of function. I kept up with, even “out ran” my peers. I was a fighter; a hero.
To do that fighting, I adopted a laugh-at-the-foe coping style. I minimized difficulties and ignored pain and tiredness — pushing through, working harder. Those qualities are admired as heroic, and that style served me well.
When Post-Polio came, though, that kind of “heroism” didn’t work. I couldn’t push. There was no way to hide the new debilitation, weakness, exhaustion and pain.
More than my body was knocked off balance. I also reeled in disappointment. Why couldn’t I beat this? Family and friends were similarly bewildered.
The confusion cleared when I understood that Post-Polio has to be faced with a different kind of heroism — the genuine article.
Webster defines hero as “Any person . . . admired for courage, nobility, etc.” A hero looks a challenge in the face and grapples with it.
True courage says, “Ignoring and denying, trying to run from this enemy ironically puts me on a collision course with it. Only facing the truth and dealing with it can keep my PPS from being worse than it has to be.”
Pride tends to substitute bravado for courage. Does a (sane) soldier say to his squad, “I’ll take the enemy on alone, guys. Don’t bother to help.” That is foolish exhibitionism. It is not genuine courage, either, for me to refuse to accept or ask for help when I need it.
A genuine hero doesn’t hide, doesn’t pretend. And you know, I’ve found that it takes more courage to be a bona fide hero than the kind I used to be. My doubts are settled. I’ve not become a wimp.
I wonder — are the Tennessee Polio Heroes clinging to the old idea of “hero,” or have they consulted Webster lately?
Linda’s Lines
by Linda Scott
HAPPY THANKSGIVING EVERYONE. The Salvation Army sponsors a Thanksgiving Food Basket available to low income persons for three days before Thanksgiving. The basket must be picked up, at a location to be announced, by yourself or a designated party with ID and proof of address. For further info: Salvation Army 325-6814.
HAPPY HOLIDAYS! Join us for our third annual Holiday luncheon, Saturday, December 10, 11:30 a.m., at Ripples Restaurant in Cavanaugh’s River Inn. We order from the menu with individual checks. The river setting is lovely and the company delightful.
Thank you Elizabeth Behrendt for sending me “New Ideas For Old Polios,” an interview with Fred Maynard MD and Augusta Alba MD. The article discusses muscle strengthening, especially the correct exercise for you. This handout is available at support group meetings and by mail. I welcome articles. Please feel free too send them to me.
Also, now available at the meetings and by mail is, “The Worsening Respiratory Effects For Post-Polio Survivors” by John Bach, MD. Must reading for all polio survivors to help identify respiratory problems, with solutions to discuss with your physician.
Tapes from the June 1994 St. Louis Post-Polio Conference are now in the support group meeting library.
HANDOUTS AVAILABLE BY MAIL
- “New Ideas For Old Polios”
- “The Worsening Respiratory Effects For Post-Polio Survivors”
- “Winter Is Especially Hard For Survivors Of Polio” (tips on keeping warm)
- “Experiences of Living With A Rare Disorder: What do you need to know about your illness:”
- “Living With A Rare Disorder: Marital Effects of Chronic Illness”
Call or write to request these handouts. Linda Scott, 1320 N. Hollis, Spokane, WA 99201.
About Polio: A Specialist’s Note
Acute poliomyelitis is a viral infection of the anterior horn cells within the spinal cord causing varying degrees of muscle paralysis while sensation remains intact. Poliomyelitis destroyed some of the muscle fibers and thus the remaining musculature has had too function at a higher demand than normal. Patients improved their function through substitution of other muscles or using passive tendon tension by alternate posturing. Substitution was exquisitely effective. It also introduced the potential for overuse of remaining muscles.
The current Post Polio Syndrome is characterized by loss of strength, increased fatigue, and muscle or joint pain. There is strong experimental evidence supporting the loss of muscle fibers through damage from overuse, edema, inflammatory cell and fiber degeneration. Muscle pain is a sign of injury. The key point is that most patients with loss of function are not suffering from inactivity. Exercise can make only a small contribution. The primary therapeutic program is to reduce the strain on these muscles by lifestyle modification or assistive equipment. If strain can be relieved, there has been mild improvement of strength and significant improvement of function.
Jacqueline Perry, MD Rancho Los Amigos Medical Center
Downey, California
Do you have metal plates/rods attached to your bones with pedicle screws? If yes, contact Naomi Reid at (509) 299-5509.
My Best Advocate
by Dave Graham
If there is something that I learned from having Post Polio Syndrome, it is a new understanding and awareness of the medical profession. My experience has served to define how I must be diligent, participating in each step of my treatment in order to achieve the best results.
During those epidemic years of the ’40s and early ’50s, wee were so traumatized by Polio that we grabbed on to any ray of hope. We took refuge in anyone who claimed to have expertise. Doctors were considered gods. They walked about dispensing their knowledge with impunity — and we bought it, we bought it all! The fact was that no one knew very much about polio and that included the doctors.
The word, “advocate,” means “to plead in favor of . . . ” At our Polio Outreach meetings, you hear this word used all the time, being our own “advocate.” During treatment we recommend pleading in favor of ourselves.
To me, this means speaking out, stating my position on how I feel, my pain, my fears, and when appropriate, my lack of confidence in what a physician recommends. I require adequate explanations and give little thought to how I may be perceived by demonstrating my ignorance.
Most physicians prefer a patient that speaks out. They need feedback to personalize the treatment.
I learned to take the position of a customer, not a patient. I consider the medical community a purveyor of goods and services. From this perspective, all participants in my treatment are better served, especially me.
The successful merchant takes time discussing his customers needs, likes, and preferences. He distinguishes himself by providing specialized service or product. His success depends on results. We are familiar with this drill. We deal with merchants regularly when we buy clothing, appliances, gifts, cars, etc. If we feel unhappy about any aspect of a transaction, we voice or displeasure.
Is the medical profession so far removed that it does not fall under such scrutiny? I think not.
My confidence lies in the scripture: “For God has not given us a spirit of timidity, but of power and love and discipline.” (2 Tim. 1:7).
This verse also points out that my assertiveness must be tempered by a spirit of love.
Inspiration
I Searched and Found
by Sharman Collins
When first diagnosed with post-polio in January of 1991, I felt overwhelmed with the enormity of the changes facing me. How bad was this going to get? Would I still “fit in” with my family and friends? How could anyone cope with enevitability of losses of bodily function and still enjoy life? As the mother of four active sons and the wife of an athletic husband, favorite activities for years included cycling, skiing, weight lifting, aerobics, etc. How could the body that had served me so well betray me and in such a terrifying and unpredictable way? I desperately wanted to meet someone else who was dealing with these same problems. I wanted to see if they had any of the answers!
No support group existed in Spokane at that time. I began to search for information. I wanted to know everything I could possibly find out about the changes occurring in by body. I amassed a small library of articles from major research centers. I put an article in the local newspaper and had 150 calls from other people who had PPS. The support group first met in June of 1991.
I also began a spiritual search. I read every self-help book I could find. I imagined lying on sun-drenched beaches while I grew new nerve cells. Conquering this illness had to be mind over matter! By August of 1991, I was seriously depressed; not coping well at all. I had never experienced a problem that I had not conquered by my own efforts. All this time, my post-polio symptoms rapidly worsened. I was having problems with every part of my body. Walking was becoming a nightmare of counting steps from one place to another. Every night I felt pure torture of painful cramping muscles and frightening twitches that meant more nerves were dying. I began to feel isolated from my family and friends; I couldn’t participate in their activities. I felt alone. No one seemed to understand my increasing desperation.
About this time I met someone in the support group whose past experiences intrigued me. She had led an unbelievably adventurous life in spite of physical problems from her original polio. And now, she had to give it all up. At the first support group meeting that she attended, she talked about joy and grief existing side by side in her life. I wanted to know more. Experiencing a lot of grief, I wanted to find joy in my life. I didn’t even know what questions to ask her. I had grown up believing in God — but I viewed him as a benevolent father-figure, one that didn’t have a lot of interest in the lives of individual people.
A few months later, I asked her to write a personal polio history for the newsletter. She told me that she would have to talk about the central relationship of her life — her relationship with Christ! Absolutely mystified — I pondered the meaning of this. It took me several more months to get up the courage to even talk to her about it.
That was about two and one-half years ago. I now know what it means to love Jesus Christ and to accept the love He so freely and mercifully offers me. He loves me for who I am now — whether I can walk, sit up or function in any capacity at all. And all I had to do was accept him into my life. He comforts me in my affliction — He gives me the grace to go on in spite of increasing problems. And he enables me to comfort others who suffer the same post-polio problems that I do.
As it says in the Bible, “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. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.” (2 Corinthians 1:3-5)
P.E.N. & ink Link is happy to accept articles from guest authors and will consider them for publication. Send written offerings to:
508 Shoreline Drive
Liberty Lake, WA 99019
Guest Column
A book review by Sylvia Smith.
Of Myths and Chicken Feet, A Polio Survivor Looks at Survival. By Nancy Baldwin Carter
Nancy feels there is no loss of dignity in being handicapped. Dignity is what’s inside a person. Remove, she says, the unacceptable barrier of inaccessibility. That is the problem, not us.
Ms. Baldwin-Carter is the founder of Nebraska Polio Survivors Association, NPSA, and editor of “Gleanings,” the monthly newsletter. The book is a compilation of her essays.
She opens with her polio experience in 1948, growing up, college, the real world. Then, in 1970, the subtle, almost imperceptible changes started. Now in a wheelchair, her body fights to resist the deterioration gnawing at it daily. Then the essays begin explaining her feelings when watching a video showing equipment for those with disabilities. Many illnesses were mentioned, but not polio! Also, was expressed, her reaction when she got her first piece of mail for the “physically challenged.” Nancy talks about her diet of banana splits, Fettucini Alfredo and now green salad. And all of this with a sense of humor, of love and understanding for each of us. Most of us will be able to relate well to these essays — we’ve been there, too. Humor fills many of the pages. Including when she talks about her grandmother, “Diddy.” Grandmother didn’t know how to cook and left the pits in the cherries when she baked a pie! Diddy loved chocolate cake for breakfast and clung fiercely to her independence.
In summary, Nancy states that yes, even Supercrip (her pet name for herself) has been known to have problems, just like regular folks. It’s time to let the world know who we are, chicken feet and all. It’s time to dispel the myth. ——-Sylvia Smith is new to our support group and new to Spokane. She had polio when she was 12 years old in 1949. Like many of us, she is once again experiencing difficulties. Sylvia has recently taken a meaningful step in her life. She is attending Change Point, the S.F.C.C. program for adults in transition. Sylvia would be glad to share her class experiences with you. Just ask her at the next meeting.
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This registry is designed to provide transportation to support group meetings. If you need a ride or you can provide one please call Denise at 926-5192.
P.E.N. & ink,
mailing to over 300 individuals in the greater Spokane area, to provide experience based advice and emotional support for Polio survivors. Mailing address. . .
508 Shoreline Dr.
Liberty Lake, WA 99019