Living With Polio

A Paralyzing Fear

Kathleen A. Navarre

My reaction to the film “A Paralyzing Fear” ran the gamut from objective film critic to the very personal reliving of a long repressed event that seemed to happen to someone else, or in another lifetime, but also clearly happened to me.

The event, polio at the age of six in 1952, is at once an intimately personal experience, and at the same time a unifying event that binds all polio survivors by a shared experience. We are all unique individuals as polio survivors, yet one moment in time unites us – the moment the polio virus changed our bodies and therefore our lives.

Regarding my personal reaction, there were some flashbulb memories, the kind of memory that is like a picture, as if the instance remembered was not in the past but a present experience with vivid details long lost in the past. There were the hot packs, too hot for the nurses to touch so they handled them with tongs, the confining heat when first wrapped and then the prickly, damp wool as they cooled off. The haunting rhythm of the iron lung, and my hair being tugged by the rubber neck band as I was pulled in and out of it several times a day. For me, at the age of six, the hair being pulled was the biggest trauma of the day. How little I knew of the future struggle to come, with each year a new challenge, some successes, some failures, but all in all, a very long road ahead.

The one personal and profound insight I had while watching the film was of polio’s effect on my family and on the whole community of my small city. I showed a preview of the film to a support group that I chair. My eight year-old, red-haired, niece was with me for the meeting. At one point I looked over at her, as she was intently watching the film, and was struck by the realization that my parents had to see their red-haired little girl being put in the iron lung and then they had to leave the hospital to go home and raise four other children who were as confused and bewildered as I was by the events surrounding that late summer in 1952. As I looked at my niece, I wondered how I could possibly handle her being paralyzed and further how I could cope with the sad faces that waited at home. Life was changed for all of my family and I deeply respect their ability to handle this overwhelming illness with love and caring.

At the community level, polio as an epidemic has some unique features from other paralyzing illnesses. It was not an individualized event in the epidemic years; it was a public event that brought fear, compassion, and prejudice all at once. In my city of 40,000 to 50,000, it was posted in the daily paper who was hospitalized with polio that week. As the film showed, siblings suffered from being banished from friends, not out of hatred, but out of fear. However, as a child, it does not matter why you are ostracized; you just feel the hurt and go away. In the 1950s there was not the support group concept that would have helped siblings, family and survivors cope with the emotional confusion that was nearly as crippling as the physical disease.

My personal reaction to the film was somewhat like the Vietnam veteran’s reaction to the film “Saving Private Ryan.” One veteran’s reaction was summarized in a quote from “Life Magazine.” He said, “It brought back stuff that I’d never remembered, stuff that happened that I’d brushed out of my mind. It brought it back like a flash, like I was there.” For me, the viewing of the film “A Paralyzing Fear” was painful in parts and helpful in parts. As each individual shared their story, I felt less alone in my struggles, and I hope it is healing in the long run as buried pain can never heal.

Now for the more objective critic’s corner: The people who watched the film who had little prior knowledge of polio’s history, e.g., Warm Springs, Roosevelt’s “Magnificent Deception,” the “Mothers’ March of Dimes,” the vaccine controversy between doctors Salk and Sabin, found the film interesting for a documentary and enlightening. I also found the presentation well done and the narration excellent. The overly dramatic pitch that Hollywood took certainly added to the “poor crippled poster child” image most of us have been fighting all of our lives. It was the approach of the 1950s, and the stereotypes it created live on. I would have liked the film to comment on this issue, but it was an historical documentary, and in that narrow definition, did its job well.

The problem I most take issue with in this documentary regards the ending of the film. As an historical document, the film ends as if the story of polio is only an historical one. As all polio survivors and their families and friends know, just as the polio vaccine has ended one chapter of the history of polio, post-polio syndrome has opened another chapter. The end of this new chapter has yet to be written. Without public knowledge and support, the final chapter is in jeopardy of a less than optimal ending. It is my hope that the film, “A Paralyzing Fear” is a catalyst for bringing new interest, knowledge, research and support for the final chapter.

December, 1998 

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