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Postpolio Syndrome:
The Second Time Around
(Part 1)

Reprinted from PN February 2011

"It's not whether you get knocked down, it's whether you get up."
— Vince Lombardi, American football coach

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In December 2009, I walked into a Safeway grocery store and looked at the long aisles ahead. My legs trembled; I broke into a sweat and thought, I just can't make it one more time. I stared at the store's electric shopping carts I had avoided for so long.

I was the capable teacher who traveled to 34 countries, six times to Africa alone. Now I was also the polio survivor who could no longer walk unaided to the bakery at the back of the store.


In that moment I gave up, gave in, and cried. Minutes later I began to lay aside a lifetime of self-reliance as I settled onto the electric cart. I decided to trade in sweat and forced adrenaline for wheels and eventually greater mobility.

What new can possibly be written about polio, the dreaded epidemic that terrified American families in the 1940s and 1950s? The sweet-faced poster child in clunky leg braces and heavy crutches and the black and white photos of hospital wards with row upon row of iron lungs are engraved in our collective memories. We remember the American president, Franklin Roosevelt, who requested to be photographed from the waist up for fear of panicking the voting public.

Polio is an "acquired"—not a congenital (birth)—condition, a highly infectious intestinal virus that invades the spinal cord and causes paralysis. Depending upon the site of infection, the results vary from minimal damage to the lower limbs to devastating involvement of upper trunk musculature. While we held up Jonas Salk and Albert Sabin as heroes for providing vaccine protection from "infantile paralysis," their rescue extended only to those who had not been struck down. The march of medical miracles never reached those who already had polio. The paralysis remains incurable, and most of its survivors have been disabled for a lifetime.

It's All About the Legs

People infected with polio before vaccines arrived in the 1950s typically had surgery on feet and legs to straighten contracted muscles, correct deformities, or stabilize joints. Unfortunately, these surgical measures did not always earn an "A"—legs rarely looked "normal." Paralyzed muscle groups wasted, and limbs shortened. Heavy steel and leather braces resulted in awkward lurching movements. Feet also suffered from unsuccessful surgeries. Scarred or deformed feet were housed in high-top leather boots, while the weaker leg coped with a drop foot that caused frequent falls.

To look beyond my personal experience, I conducted an informal survey of polio survivors. Using fictitious names, their ten voices join mine in sharing polio experiences rarely found in medical journals. Many reported an average of four to five surgical procedures in the early years, four to five hospitalizations, and four to five traumatic separations from their families. Damaged limbs were cast, splinted, hot-packed, and prayed over but rarely responded favorably.

We tried to forget our legs as part of "us," which is impossible, as denial has a long memory. Our weakened legs did not live up to their job description: to walk, much less run, skip, jump, dance, or kick a field goal. Our uncooperative limbs tried to make us observers rather than participants of an active life. Charles Mee in his 1999 book A Nearly Normal Life underscores this point: "The goal was to be a real person who could walk. Walking was the whole deal."

Tropical-medicine expert and polio researcher Allan Robbins identifies with those who suffer extensive damage: "What no one ever told us was that polio had not attacked our muscles or our joints; that damage was secondary. Polio had attacked our wiring, our nervous system, and that no matter what we did from now on, we were doing it with damaged wiring that was seriously under code."

Read more in the February 2011 issue of PN. Part 2 is scheduled for the March issue.

 

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Postpolio Syndrome:
The Second Time Around
(Part 1)

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