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Post-Polio Health (ISSN 1066-5331)

Vol. 4, No. 4, Fall 1988

Support Groups: Why Do It Alone?

Paul J. Rau, Greenville, South Carolina

Many polio survivors who recovered from acute polio at an early age apparently learned a positive mental attitude. As a prerequisite to accepting the pain of recovery, a positive attitude was part of the overcome philosophy – "I must do it alone."

Also, a special bond of trust was established between the polio survivor and the attending physician and between the survivor and family members who assisted in treatment.

When these pioneers in rehabilitation recovered from the initial paralysis and entered the mainstream of society as independent adults, many effectively hid or denied any residual effects.

Years later as reports on the late effects of polio began to appear, they were faced with many new problems and unanswered questions.

Where can I find a physician who will be able to renew my original confidence in the physician/ patient relationship?

Am I at fault for my current problems by neglecting my health which was such an essential part of my early life?

I have remained independent and have not asked anyone to do anything for me the past 30 to 40 years. How do I ask for help now?

Can I get help from my family when the relationships have changed from parents and siblings to spouse and children?

Support groups can provide some of these answers. Meetings are a means of interacting with health care professionals, social service agencies, and most important, other polio survivors. All will benefit from the mutual exchange.

This first step towards the self-help movement will not be easy for someone taught to "do it alone." Some survivors may need to adjust their philosophy of life to "You alone can do it, but you can't do it alone."

Paul J. Rau is the Technical Coordinator for the Greenville Post Polio Support Group, Greenville, South Carolina.

Support Groups: Who Needs Them?

Mary Ann Hamilton (polio survivor and ventilator user), Denver, Colorado

Our support group had been meeting for several months before Will appeared. Trembling all over, he pulled up a chair and plopped a black notebook on the table in front of him. When he introduced himself, he told us (perhaps warned us), "My doctor told me that I have more information about post-polio syndrome in this notebook than any doctor can find!" As his bony finger jabbed at the fat book, it was obvious his courage was failing. That full notebook held no cure.

He looked around the circle of support and quietly said, "Before I came today I was contemplating suicide. Something happened recently that changed my mind and brought me to these meetings." Our personal fears were shelved. Will had our attention.

"I was driving home from a doctor's appointment. It was snowing, one of those heavy spring storms. I stopped and watched the red signal light swing violently over the intersection, but my mind was recalling my visit with the doctor who couldn't diagnose my fatigue, the feeling of weakness engulfing me."

Sensing we understood his fears, he continued, "Through the blinding snow I saw a bird huddled in a nest cupped in the light. I watched the bird through two turns of green as it clung to the nest while being whipped by blasts of blowing snow.

"I drove on and thought about that little bird which possessed the will to survive, even in such a precarious perch. Perhaps I could find the will to fight – to hang on."

At a recent support group meeting we were going around the circle giving "Atta Boy, Atta Girl" reinforcements. Will told us, "I couldn't stop talking that first day. It was like a dam had burst and the words kept pouring and pouring out of my soul. You were listening and caring. I don't know what I would do without your support."

Who needs them? All of us who share the same fear of being out of control of our plans, our dreams, our quality of life. All of us who grow exhausted vainly trying to halt or reverse the changes brought on by this echo from the past.

We can learn from each other. Each of us has learned a valuable lesson we can share. With new support, the "Wills" of us can survive this confrontation with an old battle.

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