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Post-Polio Health (ISSN 1066-5331)

Vol. 18, No. 1, Winter 2002
Read selected articles from this issue ...

Improving Quality of Life: Healing Polio Memories
Linda L. Bieniek, CEAP, La Grange, Illinois, and Karen Kennedy, MSW, RSW, Toronto, Canada

Conference on Rethinking Care
Joan L. Headley, Executive Director, International Polio Network

Maximizing Health for Survivors of Polio - Early Findings
Alexa Stuifbergen, PhD, RN, FAAN, The University of Texas
at Austin School of Nursing, Austin, Texas

Pilot Study on the Effects of Creatine on Muscle Strength
Sophia Chun, MD, Rancho Los Amigos National Rehabilitation Center,
Downey, California

Post-Polio Bibliography

Authors' Note: People who live with the residual effects of polio experience varying levels of fatigue, weakness and pain. For many, managing these challenges involves re-organizing their lifestyles to adjust to changes in health. Individuals unable to make the necessary lifestyle adjustments usually encounter difficulties in their jobs, recreational activities, daily routines and/or relationships. In addition, some may experience intense reactions to these difficulties, causing upheaval in their lives and those of loved ones.

In this article, we invite polio survivors to consider how polio memories of various types can affect present day responses to changing health needs. We focus on the value of resolving polio memories that may consciously or unconsciously interfere with survivors' ability to make positive life choices.

If you find this article unsettling, we encourage you to read it in sections or with the support of a counselor, psychotherapist or trusted friend. We also welcome your comments (editor@post-polio.org).


Improving Quality of Life: Healing Polio Memories

Linda L. Bieniek, CEAP, La Grange, Illinois, and
Karen Kennedy, MSW, RSW, Toronto, Canada

While it is common for individuals to experience frustration or discouragement with the loss of physical function, unresolved memories from the original polio experience may amplify the intensity of their emotional responses. Some individuals live with traumatic memories of physical, emotional, or psychological injuries that have impaired their view of the world (Hale, 1996). Others may not have specific polio memories or traumas, but acknowledge the ongoing stress of coping with disability as a child, and now as an adult.

Protective Coping Patterns

Over the past decade, health care professionals have studied the coping patterns of individuals with chronic pain and the fears that block their taking steps to manage it (Asmundson, 1999). Such studies may shed light on the coping patterns of polio survivors. Though they report symptoms related to the late effects of polio, many are reluctant to consult specialists. A post-polio specific study reports that even when they do consult physicians, 50% of surveyed survivors had complied with their doctor's recommendations to use assistive devices (Thoren-Jonsson & Grimby, 2001).

The reasons for avoidance vary and they are important to understand. Some survivors experience anxiety as they approach a medical facility or attempt to wear a nasal mask. Some individuals are unaware of the cause for their feelings of inaction; others are reluctant even to discuss their reactions.

Survivors may cope with past polio experiences by not thinking about that period of their life. Blocking out memories is a common way of protecting against uncomfortable feelings such as sadness, anger or disappointment. Survivors may unconsciously avoid certain thoughts, feelings, people or places through distractions such as:

Schiraldi points out that continually blocking out memories requires enormous energy that can leave one fatigued and irritable (Schiraldi, 2000). He adds, "trying to avoid or forget traumatic memories does nothing to neutralize them. In fact, the more we fear and flee them, the more negative energy we give them (Schiraldi, 2000)."

The energy spent avoiding uncomfortable thoughts and feelings can strain a person's physiology and immune system, increasing fatigue and susceptibility to other illnesses.

Another reason survivors may avoid questioning the effects of early polio experiences is that they may feel protective of the loved ones who sacrificed a great deal to care for them. The intent of reviewing polio memories is not to criticize or blame others, but to enlighten survivors about how their polio histories affect their present day choices.

Schiraldi says that traumatic memories may continue to pursue us much like a little barking dog chases a person until that person stops, turns and faces it. "Facing the dog" is often the first step in finding healthier ways to deal with intense reactions and uncomfortable feelings.

"I was in my late 30's when my leg muscles began to weaken and I needed to wear a leg brace again. I remembered that as a child, I disliked wearing a brace because the only shoes that fit it were 'brown boy's shoes.'

"As an adult, I was surprised that I would not wear my new brace in professional and social settings. I was anxious about how management would react to my physical weakness, and how that might affect my job during a period of significant staff reductions. As a single woman, I feared further rejection from men since my disabilities already appeared to be an obstacle. Nevertheless, I was disturbed about my reluctance to wear a brace when it protected me from tripping and helped to conserve my energy. As an advocate for people with disabilities, I was ashamed that I could not easily accept using equipment that identified me more prominently as a person with a disability.

"In psychotherapy, I worked through my grief about losing muscle strength and feelings about cultural attitudes that impacted my self-esteem. I learned how to forgive myself for fearing the reactions of others. I also uncovered valuable memories. I had not realized how hurt I felt when peers avoided or excluded me."

This example illustrates how past experiences contributed to the survivor's feelings of anxiety and shame when she faced the current day decision about wearing a brace.

It also highlights the benefits of personal permission giving – allowing oneself to acknowledge reality, accept one's needs and take the steps needed to initiate purposeful changes. For polio survivors, personal permission giving is key to making emotionally healthy changes related to the late effects of polio or other chronic health conditions (Kennedy, 1998).

While the idea of permission giving may sound obvious, it acknowledges the complex dilemmas survivors may face in order to:

"I remember painful experiences during puberty that would further explain my 'shame anxiety' (Bieniek, 2001). I realized that when my schoolmates went to the Boys and Girls Club, I felt excluded.

"In the Masters and Johnson's Trauma Program, I learned to value such memories as 'gifts.' Although painful, they explained reasons for my reactions to current day situations and provided me with hope of resolving social inhibitions that still limited my ability to experience deep intimacy (Westbrook, 1996). Resolving other memories has increased my ability to breathe more deeply, concentrate, exercise and assert myself in social situations."

In her last two explanations, the survivor illustrates "facing the dog." She faced her reactions to present day dilemmas, and the limiting effects from adolescent social situations.

Continued ...

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