Monday, March 24, 2003

"In the Shadow of Polio; A Personal and Social History" by Kathyrn Black. Addison-Wesley Publishing Co. 1996

I found "In the Shadow of Polio" while searching for references on polio, which I'm hoping will help me in revising a story I've been working on for some time. Though my story ("The Proust Effect") is set in a relatively distant future, my protagonist has been disabled by a disease then extinct outside the laboratory. She contracted it from her parents, who were infected due to a laboratory accident, and who died before their doctors realized what they had. Polio, which is nearly extinct in the wild now, seemed like the best candidate for what I was after. So, I searched the topic on Amazon, picked out a couple of books I thought looked interesting, and requested them from the local library.

"In the Shadow of Polio" is a very personal tale. The author, Kathyrn Black, is a journalist who as a young child lost her mother, Virginia, to polio. In trying to understand what happened to her childhood and her family, Kathryn traces her mother's story within the greater context of the polio epidemics of the late 1940ies and early 1950ies. Virginia's case of polio started with a backache and generalized, flu-like symptoms. Within days she was paralyzed from the neck down, unable to breathe without the assistance of an iron lung. "Spinal polio" attacks the motor nerve cells of the spinal cord--resulting in paralysis, but no loss of sensation or pain. "Bulbar polio" attacks the cranial nerves that control the pharynx, soft palate, and larynx; swallowing, speaking, and breathing become difficult or impossible. Virginia Black had both forms of the disease.

After months in a Phoenix hospital near her home, Virginia was moved to a respirator convalescent center in Seattle. Though her husband joined her in Seattle, and was able to visit regularly, the children did not see their mother from the time she was first diagnosed until she finally came home to them, two years later. Though she was never again able to breathe unassisted, Virginia graduated from an iron lung to a "rocking bed"--the head to foot rocking motion allowed gravity to assist the filling and emptying of the lungs. Then, she was able to return home. But her rocking bed was a fixture in the family dining room for only a few months before Virginia Black died of unclear proximate causes resulting from her condition.

The book also addresses societal and medical historical aspects of polio. Hospital isolation and quarantine had become established during the 1916 epidemic, and persisted into the fifties, even after it was understood that quarantine was useless as a preventative measure (because the disease was spread by those with mild, undiagnosed infections). As the author notes, "The line between quarantine and shunning [became] muddled" because public fear of polio was equal to or greater than public compassion for the disease's victims. Why were some individuals spared, or only moderately affected, while others suffered extensive and permanent disability? "...many people wanted to believe that something, some mistake, misbehavior, or characteristic, distinguished the stricken from the hearty. For many people, believing that only luck divided them not only was too frightening but also conflicted with their psychological or religious beliefs. ... The spared, it seems, want to see in the stricken evidence of justice served, to find meaning and purpose in random disasters, because then they can believe they are safe."

There is still no cure for polio, although thanks to vaccination, the U.S. has been free of wild polio (i.e. endemic in the population) since 1979. Other polio-free areas include the entire Pan American region, Western Europe, countries of the Pacific and Pacific Rim, the Persian Gulf states, and many African countries. Most current cases occur in Pakistan, Bangladesh, and Egypt. Once an effective vaccine was developed, research into the disease essentially stopped. Only in recent years, has interest begun mounting in "postpolio syndrome," a deterioration in the condition of former polio patients who have been stable for many years.

I have vivid memories of walking with my parents to the local school to get my sugar cube vaccine. It was a huge relief to everyone to finally have a way to make their families safe. I also had a childhood friend whose parents were both in wheelchairs because of this awful disease.

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