Listen to the Voices of Polio

Voices of Polio

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  1. I had bulbar-polio,the rarest and most dangerous of the three strains of the polio virus, in 1952.I had just turned 7. I’ll be 70 this June. While describing my polio experience to a friend, we realized that ,as my generation of survivors dies off, there will be few people alive who actually remember what it was like during the summer of 1952 in Des Moines and in other communities hit hard by the polio epidemic that summer. . My friend suggested the obvious – that I should write an account of my experience – and this is it.

    My intention is to stick to describing the summer of ’52, but I may wander because what I know is that, despite my fairly successful efforts to hide and deny that I had even had polio, it shaped my life completely. And, once Post Polio Syndrome (PPS) hit, there was no escape from the original illness. It comes back. Part of the irony is that, the harder one tried to compensate and/or deny that they were polio survivors, the harder were they hit with PPS.

    This is not a scholarly work. There are no shortage of refernces available.I rely on two excellent books for information about polio and PPS: The Polio Paradox: What You Need To Know by Richard Bruno and Post Polio Syndrome: A guide….by Julie Silver.. These memoirs are based on 1.)the memories of a 7 year old filtered through 60 years and 2.) the memories of others – mostly family members – also filtered through 60 years of telling and retelling. I actually have very few memories, i.e.remembrances that I see as if through my own eyes. I can’t verify their authenticity. Some are or were corroborated but also by people who have shared these stories over the years. When I wondered why I remembered so little, it finally occurred to me that I was sick(!).
    and probably asleep much of the time. Also, until recently I hadn’t acknowledged or let myself emotionally register how scared and alone I felt. So these memories are based on the remembrances of a sick, often asleep, and scared 7 year old. The family memories must be tempered by understanding that we cope largely via humor convreting what could be too scary or threatening into humorous anecdotes, which accurately convey information but which, in the family, are met with amusement. I remember the first time a listener responded “that’s not funny” when I told a ” funny” polio anecdote.

    I “caught” polio from a neighborhood friend of my older sisster, who was admitted to the hospital with polio
    shortly after playing at our house. I was admitted a week later, which is the correct timing: it takes 7-10 days for the polio victim to become overtly sick after contracting the virus. I’m also told that I was misbehaving the night before I was admitted to the hospital. That was unusual , because, honest, I was a “good” kid, rarely in trouble. My mother, apparently, commented that I wasn’t feeling well. I’jj never know, but I wonder if the “P” word crossed her mind. I do know that she worried that I took the memory of her being angry to the hospital with me. My older sister, reportedly the target of my bugging, said she promised to never fight with me again if I got well. She must have considered me ” well ” for only a day or two after I returned home from the hospital

    The family story is that I went to my parents bedroom early in the morning and said the magic words : “my head hurts and so does my neck”. I have no idea if I understood the implications of what I said. Probably not. But there’s no question
    that I had said what every parent in Des Moines feared hearing that summer. The next hours are a blur to me. I do know that we met our family doctor at his office and that he diagnosed me (“bulbar polio – critical”), alerted Mercy Hospital that we were coming and sent us on to the hospital.
    I actually remember parts of what happened next, because I can still see those events through my own eyes. I remember being quickly taken taken from my mother, put in a whhlchair, and whisked away to a nearby room. I don’t remember what happened in there and the next seemingly
    ly “real” memory is being wheeled past a group+ of people, including my mother, who were standing behind a crowd-control like rope to prevent them from touching us,i.e. to prevent them from being infected with the polio virus. I remember that my mother waved and was crying, and she remembered that until I saw her
    I was smiling, probably clueless to what was happening, maybe enjoying the wheelchair ride, maybe smiling away my terror. Over the years, I had forgotten how young i was when I had polio. When I now see 7 year olds or, more poignantly, my 6 year old grandson, I realize how little I was.

    There is a story about my hospital admission that fits here but it’s not clear whether the events it describes really happened. My sisters and I are the only living witnesses, and we aren’t sure . One argument in favor of the story is that its been told for as long as we remember. The second argument is plausability: it sounds like something our Granma Dix would do. This is the story.The radio station in Ames ( WOI ) was heard all over Iowa and parts of Missouri. Responding to the large number of admissions, the noontime news, which featured the farm prices (“hog bellies up 1/2 to 2 cents”….) began reporting polio admissions to hospitals in Des Moines and, as a result, my maternal grandparents , who lived in the small town of Stanberry in northwestern Missouri first heard of my admission on the noon news. My grandmother, who inhabited a tiny somewhat self-indulgent, fun, and interesting universe of her own, felt slighted by not having been called and headed immediately for Des Moines. She would say that she covered the 135 miles in 20 minutes, which would be even fast for her, whose NASCAR style driving is legendary. Never thinking that my parents might be fairly busy and distracted by my being hospitalized with polio, she reportedly arrived in a huff.

    3500 people were stricken with polio in Iowa that summer. The remaining 27 had to run the state by themselves for the rest of the summer.
    .That is an Iowa joke,usually and best told by Iowans in a gently self-deprecating style. You can find great examples at the Ray-Gun T=Shirt Store in Des Moines ( “Des Moines: French for The Moines”,”..just killing time ’til I move to Austin”;etc..}The opening sentences to Bill Bryson’s first book (The Lost Continent, 1989) are another good example: ” I grew up in Des Moines. Somebody had to do it”.).

    Des Moines, was unprepared for the number of sick children needing to be hospitalized and exisiting reources were stretched. I was taken in my wheelchair to a room that housed children with “contagious ” cases of polio. Polo victims were also being housed at other Des Moines hospitals. There were probably 30 of us randomly distributed in either hospital beds or iron lungs. There were windows on one side of the room, which were actually large culverts since we were in a basement. I remember being in the 3rd or 4th row from the windows between an iron lung on my left and another hospital bed on my right, I don’t know if there was anyone behind me. I have a few distinct memories of “life on the ward” and don’t remember interacting with other children or have any memory of what I did every day for 3 weeks. When I thought about it, I realized that we were all very sick and scared and probably sleeping most of the time.

    One morning the iron lung that had been next to my bed was gone. I must have asked where he went, because I remember the nurse explaining that he had gone ” downstairs”. I knew that when we got beyond being sick, i.e.contagious, we went “upstairs” but hadn’t been aware of a “downstairs” destination. When I asked if he would be coming back, the nurse said “no”. By afternoon, there was a new boy in a lung in the emptied slot to my left.Only later – and I mean years later – did I understand that the boy who went “downstairs” had died.

    Family visits were quite memorable. I remember a nurse came to my bed and gave me some comic books and told me that my family had come to visit and had brought me comic books She must have pointed to one of the culverts and there in the culvert was my younger sisters face looking fairly bewildered. I waved to the head and it smiled at me. Then ,in ascending order by age ,came my older sister’s head, my mother’s, my father’s, and my grandmother’s looking kind of cross. (She may have just arrived that afternoon.) I remember being urged to show them that I had the comics and to smile and wave, which I’m sure I did.
    Then the “visit” was over. I don’t know how often they visited but it couldn’t have been a very exciting prospect to drive downtown and stick your head in a culvert and be waved at by someone half way across a room and then drive home again. My guess is that further visits were made by my parents only who probably brought more comics and, after “visiting” me, met with hospital staff to discuss how I was doing.
    I also remember a morning when I awoke and discovered that my bed was wet and saw three people – one was a doctor-
    standing each on a side of my bed’ I remember thinking that I was in trouble until I noticed that they were smiing and seemed happy to see me.Then someone came and changed my bed and dressed me in dry clothes – I have no idea what we wore. I learned later that a nurse had called my parents late the night before with a “routine” information request re my sleeping habits. As the story goes, my mother asked what was really going on and was told that I couldn’t be awakened during the routine bedcheck even when I had been doused with water I was later told that this was my “dark night”, when my battle with the virus peaked and I had survived.

    As a result of my successful passage that night , I was soon ready to move “upstairs”. I was no longer contagious, but to my dismay, my comic books were and, therefore, could not go upstairs with me. I must have become friends with Little Lulu, Sluggo, and Casper ( the Friendly Ghost). They were possibly the “people” I had actually been interacting with the most. I reportedly refused to leave without them, and utterly lacking in leverage, I soon left without them.
    I didnt stay long upstairs. I remember riding around a hallway in a wheelchair with some other boys = one of whom I became friends with later in life -and soaking in a large metal hot-tub where 6 -7 of us at a time soaked .I don’t remember seeing any girls ( except Little Lulu ) and don’t know if they were kept seperately or just not there. Boys were more likely to have po;io than girls, but girls weren’t exempt.

    Normally, I would have remained a few months following a course of PT and strentghening exercises. I don’t know what the accepted state of knowledge was at the time, but fortunately for me, the people at Mercy Hospital in Des Moines were doing what eventually proved to be the optimal treatment.Polio patients can regain strength in the first year or so post-contagion and, in fact, regain 95% of the strength they will ever regain.Space was at a premium upstairs and my parents were able and willing to set up a homemade “gym” that met specs and to do the stretching and weightlifting program at home and to meet regularly with staff and designated private doctors to monitor my progress. I didn’t realize at the time how lucky I was to be spared those months “upstairs”. (I didn’t realize much of anything in those days). I clearly remember the long wooden table and the “weights”: two sandbags connected by a strap which I could loop over my ankle, knee, or wrist. They were sewn and made of a blue and white material that looked like a train engineer’s hat or Oshkosh overalls. I vaguely remember doing the exercises – twice daily my sisters say – always to the accompaniment of “Rusty in Orchestraville”, a very nice story about a boy who diddn’t like to paractice the piano until he was taken on a trip to Orchestraville, where he acquired an appreciation of the instruments nd their sounds. To this day,the choice evokes powerful warm memories of my mother. Here is a link to “RUsty” (http://grooveshark.com/#!/album/Rusty+In+Orchestraville/4046321). Unfortunately, the story did not inspire me to practice the piano.

    The records show that I was released to “full activity” in December – 7 months after being hospitalized. I will always be grateful to my parents for their dedication to my rehabilitation.

    My first day home didn’t start off well. I got home arouund noon on a week day;my dad was home from work and we sat down to a lunch of grilled cheese and tomato soup in the dining room. My ability to swallow was still impaired and to everyone’s surprise ( and horror ) the tomato soup came directly up my throat and out my nose.My sisters say they thought it was blood. It had to have been a dramatic moment, which endures in history as black humor. My other memory of the day is being told by my sisters that I had “wrecked their summer”. My illness probably did, because they were quarantined and avoided by other people out of fer of contagion. My mother was allowed to go to the grocery store but was monitored somehow and had to buy anything that she touched. It is hard to imagine today, but in 1952, the world was not friendly to polio victims and their families. The ad campaign featuring the little girl with braces on her legs, backfired, creating an image of an unattractive handicap, something to be avoided. Under those circumstances, it’s not surprising that polio survivors were strongly motivated to be ” normal “, i.e not polio victims, not damaged.

    I was lucky that my polio “scars” were fairly easy to
    hide. My right leg is a little shorter and the muscles in my hip and leg are weaker. Without making a conscious decision that I recall, I became left=footed and stil am. So, I kick left=footed, put my left foot forward when skiing on one ski, and so on. In surfer slang, I;m ” goofy-footed”.In addition, it was easy to learn how to not limp. PPS has brought the re-emergence of a slight limp and/or tendency to drag my right leg a little when I’m tired.
    My major and enduring areas of dfficulty in addition to overall strength and endurance,are swallowing,breathing,larynx-related ( voice ), and articulation. I have learned to chew my food a lot, have gravitated unconsciously at first , to soft, easy to swallow foods, and have developed a way of rolling my head and neck to the right very subtly to assist swallowing. My family and close friends know my swallowing “move” an aren;t above subtly and playfully imitating it at times. As a result of swallowing problems, I eat very slowly, especially in social situations and, literally, get tired from all the chewing I need to do. Needless to say, I’ve had many experiences of choking,some scary.I can;t swallow most pills, which I usually take by opening the pill capsule and mixing the contents with some medium like apple sauce.I have become quite adept at dislodging pills or food that get stuck.
    Even for those of us lucky enough to avoid visible paralyses, the loss of strength and endurance is considerable – polio victims have lost half of their motor neurons – and “keeping up” requires a huge effort. As mentioned earlier, polio survivors ,as a group ,are Type A overachievers. Sadly the harder one has worked to compensate, the harder one is hit by PPS, which begins about 40 years later. At this point, I don’t know how far or how quickly the process will go. Will I lose the ability to swallow; to produce sound; be immobilized?
    I’ll see. But,for now, it’s still 1952 and time to re-enter the world as defined by second grade.

    Neil Young, the Canadian musician, had polio at age 5. He wrote the song “Helpless” to capture memories of his hospitalization with polio in 1950.
    click to hear “Helpless”

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