December 20, 2013
For most Americans born after 1950, polio is just one of several illnesses against which we are vaccinated. But for those born in the first half of the century, polio represented a terrifying reality that, in recent years, resurfaced in the form of Post-Polio Syndrome.
Though she did not contract it herself, her cousin’s experience gave Connie Anderson of Bloomington a heart for those who suffered from polio. The editor and writer compiled dozens of stories of patients and family members in “When Polio Came Home: How Ordinary People Overcame Extraordinary Challenges” (http://www.ConnieAnderson.com).
Anderson shares decades-old memories about the physical and emotional pain the mysterious illness caused patients and their loved ones. She illuminates the trauma to not only the families who experienced the disease firsthand, but also to a society beleaguered by the fear and uncertainty it created.
During the epidemic, little was known about polio. It is now identified as a highly infectious viral disease that enters the body through the mouth and is transported from the intestine to the nervous system. Spinal polio, the most common form, affects the nervous system and can cause paralysis or impair mobility; bulbar polio affects one’s ability to swallow and breathe.
Worldwide, the polio threat began to subside in 1988 when the Global Polio Eradication Initiative was launched. Since then, millions of volunteers have nearly eradicated polio by immunizing more than 2.5 billion children through the joint efforts of the Centers for Disease Control, the World Health Organization, Rotary International, UNICEF and the Bill and Melinda Gates Foundation.
Efforts to vaccinate children in the remaining three countries identified as polio endemic — Nigeria, Afghanistan, and Pakistan – are plagued by obstacles, including parents’ refusal to participate. New concerns have emerged about polio in crisis-ridden Syria, where access to children is problematic.
The gravity of the disease is well illustrated by Anderson’s stories. Though polio most often affected children under age 5, it also affected older children and adults. It could appear gradually or rapidly. Some developed severe headaches, fever, and paralysis; others had milder flu-like symptoms; still others simply collapsed.
Fearful polio was airborne, people closed windows and avoided social situations.
When parents or doctors suspected polio, children could be whisked away to one of the hospitals for “crippled children” with no preparation. When a family member was diagnosed, homes were quarantined so the patient and his family became isolated and even stigmatized. Some doctors advised expectant or new mothers to avoid their ill children.
Many patients had to undergo multiple surgeries or spend time in an “iron lung.” Sister Elizabeth Kenny, an Australian nurse, introduced a novel hydrotherapy treatment and founded the renowned Sister Kenny Institute at which many were treated. Patients were wrapped in strips of scalding hot wool, whose smell many recall today.
Physicians, nurses, and physical therapists rarely communicated with patients about their condition or treatment, Anderson reports. Children often were subjected to painful spinal taps — without anesthesia — with no warning about what to expect.
Contact with family varied. Some parents visited regularly; others were absent for months. It could
be weeks, months — or even years — before the patient returned home to discover older siblings had matured, younger ones had joined the clan, and friends and relatives had died.
The disease left an emotional toll. Children feared abandonment, isolation, and social interactions. Returning to school was often difficult for brace-bearing students who had to be carried on and off of school buses or up and down stairs.
Teenagers were often tolerated or shunned.
Above all, Anderson writes, patients harbored a burning desire to be normal, not crippled. Desperate to fit in with their peers, those who needed them would nevertheless hide or remove their braces and discard their crutches.
In 1952, the U.S. epidemic peaked, with nearly 58,000 reported cases of paralytic polio. Roughly 5 percent died and a third were left with mild to disabling paralysis.
In the mid-1950s conditions improved dramatically when Dr. Jonas Stalk introduced a vaccine that prevents the disease.
Many survivors have gone on to live relatively normal lives as employees, spouses, and parents. Some, like actor Robert Redford and former Minnesota Vikings coach Bud Grant, became celebrities.
For many years, post-polio survivors who had been sedentary for so long subscribed to the “use it or lose it” and “no pain no gain” philosophies, Anderson reports. Over time, though, higher activity levels were found to be more detrimental than helpful. But the alternative “preserve-to-conserve” approach was counter-intuitive for people who learned to fight for their lives at an early age.
In recent years, many survivors were shocked to begin experiencing late effects associated with Post-Polio Syndrome, such as debilitating fatigue, numbness, weakness, and achiness. Many resorted to using scooters or other devices to assist with limited mobility.
Though they had resisted the disability label in years past, survivors found it necessary to apply for disability benefits when Post-Polio Syndrome made employment prohibitive.
Administering vaccinations to children in other parts of the world can be quite challenging. According to the World Health Organization, political conflict, poor sanitation, insecurity and weak health systems stand between children and an 11-cent oral vaccine anyone can administer. To Anderson’s contributors, who know too well what the disease entails, impeding the administration of the life-saving vaccination is utterly unfathomable. The words of Adele Poindexter Evidon say it best: “I despair at parents who choose not to vaccinate their children against polio. I can’t imagine how I would feel if I could have been spared this disease — and my parents had chosen not to protect me.”