Post-Polio Health (ISSN 1066-5331)
Vol. 6, No. 4, Fall 1990
A Review of Swallowing Difficulties in Post-Polio Individuals
Roberta Simon, RN
Prescription for Pain
Sunny Roller, MA, Ernest Johnson, MD, The Ohio State University College of Medicine, Columbus, Ohio; Thomas P. Anderson, MD, Spaulding Rehabilitation Hospital, Boston, Massachusetts; Frederick Maynard, MD, University of Michigan Medical School, Ann Arbor, Michigan.
Tips to Combat the Stigma of Chronic Pain: An Even Dozen
Robert F. Hall
An Informal Visit with Dr. Arnold R. Beisser
Leaders and Readers Write
Sunny Roller, MA
New pain, muscle weakness and general fatigue are common complaints of post-polio individuals who fought polio once and won, but are now reluctantly having to return to rehabilitation after a 30-40 year reprieve.
Along with muscle weakness and fatigue, new pain is the most common complaint of people with the late effects of polio. It is what drives them to the doctor's door, causes sleepless nights, and eats away at their ability to get through a productive day. My pain came in dual form. It was both physical and emotional, each form feeding the other and gradually increasing over the course of four years, to finally overwhelm me.
It became something I could not just get through by minimizing, like I always had in the past. It is hard to clearly remember, but I must have continually lived in some kind of pain since contracting polio when I was four years old. During the acute stages, I was completely paralyzed - only able to move one finger. The physicians gave me ten days to live.
For the next ten years, I worked with the determination of an Olympics-bound athlete coming back from that near-death experience. "No pain, no gain," the voices would say. My parents became my primary coaches, providing the encouragement, resources, and training that I needed. How, I wonder, did I assimilate the emotional pain they inadvertently must have communicated at the loss of a healthy child? They were my private rehabilitation team. Nine months in a rehabilitation hospital-school. Ten years of exercise routines and five major orthopedic operations.
As I grew, I know they gave me morphine in the hospital, but I do not clearly recall the pain it alleviated. I was scrutinized by tall, well-tailored doctors in gray suits and shiny black shoes once every month. At the age of fourteen, I was happy to say good-bye to their alert somber faces and objective eyes. I remember hating to get new shoes because I had to stuff crooked feet into straight shoes. It was the same with new braces which pulled and pinched and poked in new places. But I did manage it all with success, often ignoring the irritations and riding along on my personality.
I went to suburban public schools. I was mainstreamed. I graduated from a state university in 1969. I taught high school college-prep English for ten years, then supervised a university co-ed dormitory for three years while working on my Master's degree. Suddenly, I started to cave in. It was thirty years after I had contracted polio: I was 35. I did not understand what was happening to me. I started to feel a tremendous amount of new pain in my back and left hip area when I would sit up in bed every morning. All of my physical activity, including standing, sitting, walking or reclining, became more and more uncomfortable and I was losing much stamina. I resigned from my job at the university because of the pain, weakness, overall exhaustion and a pervasive new sense of inadequacy.
After seeing five medical specialists who each told me something a little different, and nothing that seemed conclusive, I was referred to the Post-Polio Clinic at the University of Michigan Medical Center. The following evaluation and prognosis became the ones that I intuitively accepted: post-polio syndrome, inflamed tendons in left hip area, bad scoliosis, rotated pelvis, some arthritis, some deformities, lose ten pounds, take aspirin for musculoskeletal pain, go to physical therapy, use an electric cart, get a right shoe lift, conserve energy.
When the physician told me all the things that were "wrong" with me, my tears revealed relief in that formal knowledge, and initiated my submersion into a whole new set of feelings that I had never experienced with such intensity. As unique as our distinguishable disabilities are, so the intensity of our feeling will vary. Nevertheless, the late effects of polio generate similar emotional responses that do not go away quickly.
One of the first and strongest emotions that I felt when the doctor told me to "slow down ... things weren't going to get better ... expect a 1% per year muscle loss ... make adjustments," was an overwhelming feeling of emotional pain. Why me? Again? Emotional pain layered on top of physical pain. What did I do to deserve this?
There is an amount of grief accompanying a new sense of loss. So much of me ... gone. Not only had I lost some of my energy level, strength, stamina and functioning; I was starting to lose my earning power. I could never be the yuppie that I always wanted to be. Would I ever own a house? Would I ever be able to earn enough money? How can this be? I was one of the golden, talented, socially-aware baby-boomers! I felt tricked, and hence, very, very sad. I also felt that I had lost my sense of identity. I had been a teacher and I was proud of it. Would I be able to endure a six-hour day, trying to stimulate and motivate the typical American teenager? I was lost and my sense of self-worth plummeted to almost zero. Who am I now? Suddenly I was just a sick person, a needy woman with a lost capacity for giving. Would I look so funny that they would not want to be seen with me? Would I have any sex appeal?
Fear becomes an insidious intruder. What is going to happen to me physically in five years? Ten years? What will it really mean to lose 1% a year? Will I lose the use of my right hand? How will I write? I love to write. Will my respiration go next? I do not know. Financially, what is going to happen? Will I be able to get disability pay? Is insurance going to cover me?
Another strong feeling that I have is guilt. Now that I am more disabled, how much more of an imposition will I be to those around me? I am already more of a burden than I would choose to be: people have to help me constantly, in spite of an achieved amount of independence on my part. Surpassing all of those feelings is anger, sometimes qualifying as rage. Why did nature do this to me? It is not fair.
Due to these unwanted complications that I am trying to deal with, I feel very high levels of stress. There are so many new changes and adjustments to make. There are so many complexities to deal with physically, emotionally, intellectually and spiritually. I feel ashamed, vulnerable and defensive because I have been weakened. Yet, I still need to maintain some pride. I am also resistant to any new plans for rehabilitation. I do not want to walk back into a hospital. I was in hospitals for 14 years and they were sad places filled with trapped people in pain.
Pain was all over, inside and outside. The worse I felt, the harder I fought. The more I fought, the harder I was on myself. "What is wrong with you?" "Get going!" "Quit thinking about yourself so much!"
But today, six years later, the overwhelming pain has subsided. Within nine months of my physical therapy and getting a shoe lift, I was back to minimal, manageable physical irritations. With the help of several kind, patient, respectful professionals and dear friends, I have gradually renewed and found relief from many of the self-doubts and much of the self-abuse. My objectivity is restoring itself. The emotional pain layered on top of physical pain may never go away completely for me, but it can be managed. And that is great to know. There is hope and there is help. One must actively .choose to be hopeful and assertively seek that help for it is out there – waiting to be discovered.