In This Issue:
Sharman’s News, Sharman Collins
Prescriptions ?!?!
“Man’s Self-Worth Misconstrued,” by Dave Graham
“God’s Secret Weapon,“ by Elinor Young
Age 60+ & Low Income?
Health Insurance for All
Linda’s Lines
“Emotional Issues Brought On By Post-Polio Syndrome,” by Brenna E. Beedle, Ph.D.
The P.E.N. & ink Link
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Phone Pals
Sharman’s News
By Sharman Collins
Greetings from Spokane Polio Outreach! It has been a great summer — nice and hot. It’s hard to believe that Fall is here. I have always loved the month of September with it’s beautiful golden leaves. I hope all of you can get out and enjoy the foliage.
We have had a lot of new people come to the meetings this summer.
We have some special speakers planned for the coming months. On September 27, Sue Lienhard, a pharmacist, will be discussing different types of drugs that our doctors may prescribe for us. We need to be aware of potential benefits and hazards of drugs that are available. At our October 25th and November 22nd meetings, Dr. Brenna Beedle will be leading a workshop on assertive communication techniques. Brenna has her doctorate in Educational Psychology and is a Professor at Eastern Washington University in the Applied Psychology Department. Please read her column in this newsletter.
We welcome anyone who is interested in post-polio syndrome to attend our meetings. They are held at Sacred Heart Hospital on the fourth Tuesday of each month. They begin at 6:30 in the Mother Joseph room, next to the cafeteria.
A group of us meet for dinner in the hospital cafeteria at 5:15. Please join us! It is a good time to get better acquainted.
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I often hear a little voice in my head saying if only. If only I would have gone to more football games while I could still climb the stadium stairs. If only I would have gone to Europe while I could still pack my suitcase. If only I would have gone on a bike tour while I could still pedal.
All of these “if only’s” cause me to feel very depressed and sometimes keep me from doing things I can do. Here is one of my favorites from Barbara Johnson.
Saying “if only I had done this,” “if only I had gone there,” of “if only I had done that,” can lead to all kinds of situations, most of them bad.
If only can fill can fill your stomach with ulcers.
If only can give you high blood pressure.
If only can deprive you of fun in your profession.
If only can take the zing out of your marriage.
If only can depress you to the point of suicide.
You see, yesterday is gone forever and tomorrow may never come. Today is it! So give it your best shot, and at the end of the road you will be at the place of your choice instead of being haunted by if only, if only . . .
Much love from the members of Spokane Polio Outreach.
Sharman
Prescriptions ?!?!
Are you without this valuable insurance coverage? Low income individuals may apply to the Pharmaceutical Manufacturers Association at 1-800-762-4636 for help. Be prepared with the name of your drugs when you call.
Man’s Self-Worth Misconstrued
by Dave Graham
Our culture dictated and defined my masculine role. As a man, much of my self-worth depended on my ability to make a living and to provide for my family. I was good at it. Twenty-eight years in business paid off in our comfortable lifestyle. I possessed most of what society held as symbols of prosperity. These gave certain testimony to my value as a man and as a father.
I confess to you that a little voice constantly reminded me of my polio, but these trappings proved too the world that I had risen above it.
As I sat in the doctors office that day, complaining about pain and fatigue, my physician asked about the caveator that had appeared in my thigh. Where once lived a strong active part of my anatomy now appeared an ominous vacancy.
During the next few weeks, it became increasingly evident that my body was changing. Subsequent tests proved the suspicions. It was Post Polio Syndrome and I had a classic case.
There were many struggles. I went through physical therapy, occupational therapy, and mental therapy. Through it all, my feeling of personal worth was being bashed and damaged from all sides. My employer and I struggled to deny the inevitable. Then it was over. I was disabled.
It is hard to describe the mental calisthenics that I went through. It was impossible to deny the truth any longer. I felt like half a man and half a father since my role as a provider narrowed to a government agency and my ability to complete their written forms.
I felt depressed so my perspective was distorted and confused.
I have heard it said that some folks have to hit bottom before they turn to the Lord for help. Actually, I had been praying for God’s help all along but had not recognized it when he gave it. The help was all around me.
During my treatment, I had come in contact with other people with P.P.S. Since I still remained in a state of denial, I wouldn’t even talk to them. Here was a natural resource that God had given me and I didn’t appreciate it. I had the phone number of the Polio Outreach group and I wouldn’t call.
Well, God had another answer for me — time. Time is a great healer. It finally caused me to accept reality. As I did, I began looking for help where ever I could find it.
I found help for my self-worth problem in a scripture that goes, “I am fearfully and wonderfully made” (Psalm 139:14). If God would go to such lengths to create me, then my self-worth is grounded in Him and His acceptance of me through His Son Jesus.
I found help in accepting my new lifestyle from my friends in the Polio Outreach group. Every problem that I endured had been experienced by someone else in the group. What a blessing this has been!
A couple of years have passed since then and I am happy to report that life is good. As a fifty year old retiree I enjoy opportunities that I never even considered in my working days. Occasionally I feel a tug of conscience about pulling my own weight in society. However, I’d rather be pulling in a big trout or pulling up my easy chair.
The Bible says, “Many are the afflictions of the righteous: but the Lord delivers him out of them all” (Psalm 34:19).
I believe that! Spiritually, God has delivered me from this affliction. When I finally dealt with the issue of self-worth, I realized I have a whole new life ahead of me.
Inspiration
by Elinor Young
Elinor’s professional career and health challenges have followed a path common to us who have post-polio syndrome. In her 40’s, she was forced to retire from a stimulating profession as a missionary linguist in Irian Jaya, Indonesia.
God’s Secret Weapon
“Na’e Yan Meeli, na’e Yan Meeli Gel.” It seemed everyone was going out of their way to greet me with this new name, looking so pleased when they used it. “Hello, Bad Legs. Hello, Bad Legs Woman.”
Polio at age five had left me with an abnormal gait.
“But what,” I pondered “is the real significance of my new name?”
The Kimyals are a tribe of about 8000 people tucked in the high interior mountains of Irian Jaya, Indonesia (the Indonesian half of New Guinea). They live in tiny round huts in tightly packed villages. Theirs is a face-to-face culture with a face-to-face attitude. You always know exactly where you stand with them. Though short fused, cruel, and fierce at times, mostly they are friendly, animated, delightful people. They need little excuse to turn routine into an event of significance to relish.
Siud chose my “welcome back” feast to announce my new name. Having lived among the Kimyals for several years, I had recently returned from a break in the U.S. to spend several more years at Korupun.
One day I found my chance to ask Siud, “My legs are bad for sure, but what is the source-thought of naming me ‘Bad Legs’?”
“Your bad legs are important to us. In our villages people with bad legs can’t get out of this valley. But even with your bad legs God brought you all the way here to give us God’s Word. People with god legs have come and not stayed. Yet you Bad Legs, God has helped you stay with us. He did all this because He loves us.”
Bad Legs. What a great name!
All those people who had told me that becoming a missionary was an impossible goal didn’t understand. My bad legs aren’t a hindrance, they are a tool.
At Korupun, they were God’s tool demonstrating to the Kimyals how very, very much He loved them.
“Before I was born the Lord called me; from my birth he has made mention of my name. He made my mouth like a sharpened sword, in the shadow of his hand he hid me; he made me into a polished arrow and concealed me in his quiver. He said to me, ‘You are my servant, . . . in whom I will display my splendor” (Isaiah 49:1-3).
Though Post-Polio Syndrome finally forced me to leave my special people, my weak body remains a clever disguise:
God’s tool. His secret weapon.
Age 60+ & Low Income?
Sunny Brannigan is a volunteer with DSHS & AARP verifying eligibility for food stamps. Serving Eastern Washington she will come to your home should you need help with forms. Call (509) 456-6158.
Health Insurance for All
The State Health Reform Act will provide coverage to every resident by the year 1999. Qualifying information on the two plans now in effect is available by calling . . .
Basic Plan – 1-800-826-2444
Medicaid – 1-800-562-3022
Linda’s Lines
by Linda Scott
Are you ready for Jack Frost? . . . He’s coming, you know . . . and as 99% of Post Polio sufferers are cold intolerant, you are probably not looking forward to his arrival.
Edward Hudak, author of Winter is Especially Hard For Survivors of Polio, describes winter months as “black holes of exhaustion.” His article is one of the handouts available in our library.
Mr. Hudak describes lead-heavy, painful movements, physical and mental exhaustion, the inconvenience of heavier-layered clothing, pain, depression and finally anxiety. He offers few suggestions for coping so we have added a second page to his article with coping resources, addressing each of the symptoms.
I personally suggest a run to the desert or to the Caribbean.
He verbalizes all those feelings you’ve probably had about winter cold, but kept to yourself because you were afraid you were the only one experiencing them.
The second page also includes a brief explanation from Dr. Jacqueline Perry regarding cold-intolerance.
When the media’s barrage of “think snow” is joined by your family, friends, and neighbors, smile and “think tulips.”
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As our librarian it is my goal to provide you with information, and to offer support in knowing you are not alone in your struggle with Post-Polio Syndrome.
Dr. Mark Flapan, in his article titled Experiences Of Living With A Rare Disorder: What Do You Need To Know About Your Illness, points out that suffers of Post-Polio Syndrome are often in a state of denial, wanting to know only what is absolutely necessary about the condition. He deals with personality issues and other subtle topics.
Another article by Dr. Flapin is titled Living With A Rare Disorder: Marital Effects Of Chronic Illness. This is a no-nonsense piece about keeping love alive when a chronic illness becomes the focal point of a love relationship. Dr. Flapin examines both partner’s perspectives in detail. He states, “. . . you berate yourself for your helplessness,” but criticize the well person who assists you. This scenario can play out between any two people, recognizing it can improve your relationship. “A chronic disease may limit what you can do with your body, but it doesn’t have to limit what you do and give with your heart, mind and soul.”
All three of these handouts are available at our support group meetings. If you can not attend, contact me and I will be sure that you receive a copy, without charge.
The book, Pain Relief by Dr. Jane Cowles will be available in paperback in September. It offers a full 80 pages on chronic non-malignant pain, identification and treatment. We will have it in our library. It is also carried by Auntie’s Book Store. Call 838-0206 for availability.
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Linda not only maintains and services the library for Polio Outreach Of Spokane, she also writes a column for the state Easter Seals letter. Her diligence in keeping abreast of these issues concerning the disabled is a valuable service. She welcomes inquiries at 1320 N. Hollis, Spokane, WA 99201.
Guest Column
Emotional Issues Brought On By Post-Polio Syndrome
by Brenna E. Beedle, Ph.D.
In April of this year Dr. John Roberts, Jan Oliver, and I explored some of the emotional issues of post-polio support group members in Spokane. The group included polio survivors and family members.
I am interested in learning more about the emotional issues that are of most concern to polio survivors and their families for a number of reasons. First, I believe there are some things that can be done to help individuals cope with their problems, and second, there is very little information available in this field. I also confess a personal reason. You see, I am a polio survivor too.
We asked the folks in attendance at the April meeting to list all of the emotional issues that they are concerned about. Below is a summary of the lists that were developed.
Grief/Loss Issues — These included denial of the disability by self and other family members. Listed were, anger about having a disability, guilt and frustration about one’s physical limitations. Also listed was the impact that the disability has had on self, family and friends.
Depression –Group members were concerned about depression and that of those around them.
Social Support Issues — The issues in this grouping include feelings of isolation from family and social groups due to physical limitations. Lack of understanding from family members and friends was also listed as a reason for isolation. Still another concern was that the spouse or partner lacked understanding about the physical and emotional effects of PPS.
I also included the following concerns in this grouping: help with household chores, self-care tasks, mobility and the lack of knowledge of PPS in the medical community.
Self esteem/Self concept Issues –People expressed many concerns about their feelings of inadequacy. They felt they could no longer meet the needs of their children, their spouses and their employers as they had in the past.
Issues about body image included negative feelings about appearance, using assistive devices or wearing braces. People admitted feeling humiliation.
Physical Disability Issues — Short and long term physical effects of PPS and chronic pain were listed. Even though these are physical, rather than emotional, issues I thought it important to share them.
I am presently working with Sharman Collins and the Spokane Polio Outreach group to plan some workshops* on assertive communication. We want to learn to express our feelings and to listen to others. Assertive communication can also teach us how to resolve conflict in a way that everyone’s needs are considered. I believe that these skills will help in dealing with many of the issues listed above.
I am developing a nation-wide survey based on this information. The purpose is to find out what other groups and individuals have to say and what they are doing to help people with PPS. I can find no research that focuses on these emotional issues so this survey should provide interesting and helpful information to other PPS researchers. I hope to share this information with you in the future.
*These workshops are scheduled for the Polio Outreach meetings on October 25th and November 22nd, 1994. Meeting times are 6:30 PM and are held in the Mother Joseph Room at Sacred Heart Hospital.
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
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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.