This article first appeared in December 2010.
‘Tis the season to give thanks. Whether you’re thankful for your family, your friends, your pet, your job, your church, your car or that sandwich you had for lunch yesterday, everyone has something to be thankful for. What about your health? Recently, I wrote a series of articles on the dread disease polio. In my mind, I’m thankful for Jonas Salk, the doctor that cured polio in the early 1950s and refused to patent his vaccine for personal gain. During the short course of Ike’s first Presidential term, polio went from a terrifying epidemic preying on innocent children without warning to a dark memory. Salk’s miracle vaccine could not help those afflicted with the disease before its discovery, but did manage to stop the illness from spreading to future generations.
Although our long national nightmare of polio was fast becoming a memory, what remained were the victims. Some of those victims were celebrities, most of whom showed no lasting signs of their disabilities: golfer Jack Nicklaus, writer Arthur C. Clarke; actress Mia Farrow; singers Neil Young and Ian Dury; musician David Sanborn; TV star Dinah Shore; singer Joni Mitchell; Supreme Court Justice William O. Douglas; director Francis Ford Coppola; nuclear physicist J. Robert Oppenheimer and actor Lionel Barrymore. Ironically actor Donald Sutherland, who played “Hawkeye Pierce” in the movie version of M*A*S*H, had polio as a child as did his television alter ego, actor Alan Alda. My life, at least as far as I know, has never been touched by polio. The closest I could get would be that Margarete Steiff, the German seamstress who created the Steiff Teddy Bear line so prized by my wife Rhonda, had polio.
However, the vast majority of those victims were/are just plain, everyday folks. In the days and weeks following that series of polio articles, I was contacted by several survivors who shared their stories with me and now I’d like to share a few of them with you.
My long-suffering editor, Ethel Winslow, informed me that she had an uncle, Eldon, who had polio as a child. He was nursed back to health by her Grandma, who encouraged him to pass the time spent recuperating by drawing. Eldon became so proficient with pen and paper that he went on to become a professional artist. He worked for the Walt Disney company, and later started his own advertising-art studio with another uncle (Fred) in Detroit. Eldon shares that industrious down-time history with many of the celebrities listed above, most of whom credit battling the onset of polio with sharpening their creative instincts and hidden talents.
A friend from Facebook, Toni Wilson, was kind enough to share her recollections with me of her battle against polio as a 5-year-old child. Her story, as poignant as it is beautiful, is surely an evocative example of this once fearsome disease. I will relay it to you as she relayed it to me. I could not possibly improve on Toni’s own prose. “All dressed up in the beautiful new dress that my grandmother made from feed sacks, I remember waiting in our entry way for my mother’s friend to visit. I don’t recall her name, but I do remember that she offered me a chocolate candy bar which I refused because I had abdominal discomfort and felt very tired. My mother and her friend knew I must have been ill to have refused a piece of chocolate.
“Within hours or days I remember lying on a couch, naked and having fever. My grandparents, mother and father surrounded me and tried to keep me cool with cold cloths to my body. My mother said that the doctor could not come to our house until midnight because he was seeing other patients. Upon the arrival of the physician, he immediately checked my extremities. It was one of my arms that indicated a lack of mobility. It was stiff, as was my neck, indicating possible polio. The doctor said that I needed to be admitted to the hospital and that he thought I had polio.
“I have a very vivid memory of Ball Memorial Hospital in Muncie, Indiana. At five years of age I was put in a crib because there were no beds left in the ward. My crib was placed by a window, with other children in their beds perpendicular to mine. There were windows to look through, as dividers, between parents and their children. This was called ‘Isolation.’
“Upon arriving I remember the long, very long, needle coming toward me. I was crying and afraid and wanted my parents. I had to have a spinal tap, and it was no fun! They had to hold me tightly so that I couldn’t move. The nurses and doctors said that I “squealed like a pig.” I wanted to go home. My parents waved to me through the window, but I couldn’t move my arms any longer. The nurse put diapers on me, but I protested. I could no longer sit up or play with my beautiful dolly my parents had brought to me. I couldn’t eat by myself. The child in the bed by my crib died, and I was given that bed. Sometime later — days? — my parents came to take me home. I found out later that they had taken me home to die. They didn’t want me to be alone to be taken by the Lord.”
It took a long time, but with the love, support and encouragement of her mother combined with Toni’s resolve to attend Kindergarten in Hartford City that fall of 1948, she recovered. Toni’s husband and father-in-law worked for many years in the Rotary Building, west of Riley Children’s Hospital on the campus of the Indiana University Medical Center. Ironically, that building was donated by the Rotarians in the 1930s for use as a polio rehabilitation unit until the disease was eradicated.
Toni reports that she still experiences some weakness and atrophy on the left side of her body and her left arm experiences less pain than her right arm. She introduced me to the term “Post-Polio Syndrome,“ or PPS, by stating that she has no symptoms that she can detect. PPS? What could that be? At that very moment, another Facebook friend, Irvingtonian Loyce Stultz, answered the question for me. Loyce explained that she had contracted polio at age 2 while living with her family in Los Angeles. Unlike Toni, Loyce’s was non-paralytic polio, which most often required the use of hot packs as treatment.
Loyce directed me to the Christopher & Dana Reeve Foundation Web site which is very informative and contains hundreds of stories from Polio survivors. It is estimated that 60 percent of all people who have had polio will develop Post-Polio Syndrome. The World Health Organization puts that number at 12 million people worldwide. The National Center for Health Statistics estimates that one million of those polio survivors are in the United States. About 433,000 of them reported paralysis resulting in some form of impairment.
Unlike Toni, Royce states that she has “suffered from all sorts of aches and pains, early arthritis and fibromyalgia, which my physician believes is related to early polio. I don’t have any memories (of polio) and all persons involved are gone now, I myself am 71 and grew up in Irvington. I was raised by my grandmother at 46 Layman. I’m sure that many people who are survivors and are now experiencing after effects may not be aware of why. My own physician acknowledged that this syndrome exists yet because the population that had polio is aging, not much is being done about it. There are numerous Web sites that address the syndrome and a support group online.”
According to the Reeve Foundation Web site: “For years most of these polio survivors lived active lives, their memory of polio long forgotten, their health status stable. By the late 1970s, polio survivors were noting new problems of fatigue, pain, breathing or swallowing problems, and additional weakness — medical professionals called this the “Post-Polio Syndrome (PPS).”
PPS may appear as a flu-like exhaustion that worsens as the day progresses. These symptoms of fatigue may also increase during physical activity and side effects include difficulty with concentration and memory. Physicians believe that risk factors are determined by length of survivorship coupled with the greatest range of paralysis recovery. Just as polio attacked the most vulnerable members of our society before 1954, the children, PPS now seems to punish those survivors who showed the greatest strength and courage in recovery.
Researchers attribute PPS to the relationship between the nerve cells and their corresponding muscle fibers. When the original Polio virus destroyed or injured those “motor neurons,” the muscles were orphaned and paralysis resulted. Polio survivors who regained movement did so because their nerves recovered. The longer a recovered survivor lives, the harder those “recovered” nerves and overused muscles had to work, leading to complications known as PPS. Polio survivors can block those complications with regular health check-ups, by eating smarter, avoiding excessive weight gain, and by stopping smoking or over-indulging in alcohol.
The best advice for polio survivors experiencing signs of PPS? Pay attention and listen to your body. Work out regularly but stop if you experience pain, a major PPS warning sign. Use painkillers, especially narcotics, in moderation. Do not overuse muscles, do not over exercise and especially do not try to “tough it out “or “push through the pain” during workouts. The most common symptom is fatigue and loss of mobility.
As you may well suspect, for some with PPS, reliving their childhood experiences with polio can be a traumatic and even terrifying experience. It is important to remember that PPS in not a recurrence of polio and is not typically a life-threatening condition. It may cause significant discomfort and disability but Web-based support groups are excellent resources for victims to utilize and know that they are not alone in their struggle. If you are a polio survivor and think you might be experiencing Post-Polio Syndrome, or PPS, consult your physician for the best advice. In this season of thanks, be sure to remember the most important person in your reflection rotation by taking a moment out for yourself. Respect yourself. Because if you don’t, who will?
Al Hunter is the author of the “Haunted Indianapolis” and co-author of the “Haunted Irvington” and “Indiana National Road” book series. His newest books are “Bumps in the Night. Stories from the Weekly View,” “Irvington Haunts. The Tour Guide,” and “The Mystery of the H.H. Holmes Collection.” Contact Al directly at Huntvault@aol.com or become a friend on Facebook.
