Edmund Sass, Ed. D.
Not too many people remember polio any more. Most of those who do are grandparents now, grandparents who back in the 1940s and 50s were caught up in the hysteria of summer after summer of polio epidemics. Parents then, they wouldn't let their children go to the beach, city swimming pool, or county fair out of fear that they might somehow contract the disease and be left crippled or, worse yet, confined to an iron lung for the rest of their lives.
Adding to these fears was the fact that polio was, and still is, a mysterious disease, appearing unpredictably and striking its victims, mostly children, with a frightening randomness. It was primarily a disease of the summer months, occurring 35 times more frequently in August than in April, the month of lowest incidence, yet the reason for this seasonal irregularity has never been determined. In fact, the exact means by which the polio virus is transmitted remains unknown.
There was never a "cure" for polio, and the most effective means of treating its symptoms was not a result of medical research. Rather, it was a procedure developed by Sister Elizabeth Kenny, an Australian nurse. Not a nun, the title "Sister" referred to her former rank of chief nurse in the Australian Army. Kenny's method of hot packing, stretching, and passive manipulation gradually replaced the traditional approach of prolonged immobilization of polio-affected limbs through splinting and casting. Immobilization was not only ineffective, but likely resulted in even more severe paralysis.
The largest of the polio epidemics in the United States occurred in the early 1950s, with well over 100,000 cases during the years 1952 through 1954. Then in 1955, a breakthrough finally occurred when, after massive field trials involving nearly 2 million children, the Salk vaccine was shown to be effective in preventing polio. In 1957 there were fewer than 6000 cases in the United States, and by 1964, two years after the introduction of the Sabin oral vaccine, polio had all but disappeared with only 121 cases reported nationally. Though polio remains a serious problem in some parts of Asia and Africa, "wild" polio virus no longer exists in the United States, and the few cases that do occur are either vaccine-related or imported.
Polio's legacy remains, however. In 1977, the National Health Survey found that there were still over 250,000 persons living in the United States who had been paralyzed by the disease, and estimates of the total number of polio survivors in this country range from 400,000 to 600,000, more than the combined number of individuals suffering from multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease).
A polio survivor myself (class of '53), two colleagues (Tony Sorem and George Gottfried) and I have spent three years learning about polio's legacy. I would like to be able to say that we have solved polio's many mysteries, but that is not the case. In fact, that wasn't even the goal of our project. Rather, we sought only to preserve for the sake of history the stories of polio survivors and provide at least a glimpse of what it was like to have paralytic polio and live with its aftereffects. To accomplish this goal, we interviewed and/or corresponded with more than 40 polio survivors. Thirty-five of the interviews have been compiled into an oral history titled Polio's Legacy.
When we began this project in the spring of 1992, I had very little idea of what we might learn about polio and those whose lives were affected by it. I did anticipate, however, that those we would interview were likely to be a diverse group with a variety of experiences and types and degrees of disability. Based on my own situation, I also expected that most polio survivors would be living ordinary, productive, and reasonably happy lives.
These expectations generally proved to be accurate. Of the 35 individuals included in the book, all but one are or were employed either outside of the home or as homemakers. Nearly all are married, have children, and lead essentially ordinary home and family lives.
The degree of their disabilities is quite variable. Only two of our interviewees have such severe paralysis that they have needed the assistance of a wheelchair since the time of their acute illness. Many, however, require the assistance of braces, crutches, or canes for ambulation. In spite of dire prognoses and severe initial paralysis, a few seem to have recovered completely, or at least nearly so. They have no paralysis, and few, if any, visible signs that they had paralytic polio. In fact, one of our interviewees (Charles Stone of Little Falls) recovered so well that he was able to have a 20-year career as an Air Force pilot!
Most of those who remember their acute illness recall having the classic symptoms of fever, headache, upset stomach, and in some cases, a stiff neck and sore muscles. Several remember having limb weakness or paralysis before going to the hospital. Hardly any believe that they know from whom they contracted the disease.
As far as medical treatment, nearly all who had polio after 1940 received the Sister Kenny method of hot packing and stretching. Arvid Schwartz of Green Isle provided the following description of his not-so-fond memories of the Kenny method:
(My early treatment) consisted basically of hot packs and then more hot packs. I dreaded them. They were hotter than hot, and before they cooled off, they'd come by and put on fresh ones. We had to lie on our backs with our feet up against a footboard. We weren't allowed to sit up or even lie on our stomachs, and we couldn't have a pillow...There were two sessions of hot packs in the morning and one in the afternoon...(and) there was a great big guy who would come and do the stretching. It was quite painful, especially when he would come and stretch my leg muscles.
Several of our interviewees met and were treated directly by Elizabeth Kenny. Though all have similar recollections, perhaps Ray K. Gullickson of Roseville paints the clearest picture of her:
She was a very tall and elegant woman, and she inspired confidence just by her manner and the way she carried herself. She had a delightful accent which made her an interesting person to listen to. If I close my eyes, I can still visualize her standing next to my bed wearing a long, black dress and a big hat with a beautiful ostrich feather...She didn't wear jewelry, and she didn't wear any makeup. I remember her face as being strong and angular, and her eyes were very intense. When she looked you in the eye, that intensity demanded all of your attention, and when she spoke, people listened to her... Everyone knew who was in charge, and we received whatever treatment she recommended. I've never known anyone as assertive as she was.
Ironically, only Dick Owen, a physician who became Medical Director of the Kenny Institute, recalled being treated with the typical pre-Kenny method of prolonged splinting and immobilization. Dick's description of the medical treatment he received during his 1940 hospitalization illustrates the differences between this approach and the Kenny method:
As part of my treatment, I was kept on a frame made of canvas strapped across a metal bar. I was then put in Toronto splints, which were leather-covered splints that kept the knees bent, the feet pulled out a little bit, and the legs spread apart. It was really creative and in some ways like a bad, normal posture. It was almost like the people in health care thought that normal posture should be like Leonardo da Vinci's picture of a man spread out rather than with his legs held underneath. I spent a total of nine months in that situation with very little therapy. The next year, they did start doing therapy with me using braces and having me stand as the main form of treatment.
By today's standards, many of our interviewees experienced hospital stays of incredibly long duration. Some were in the hospital for nearly a year, and Marilyn Rogers (Minneapolis) told us that her initial stay in the hospital lasted more than two years. With these lengthy hospitalizations, it is no wonder that June Radosovich, from Ironton, recalled the Kenny Institute as being so crowded in 1952 that polio patients were "stacked up like cord wood."
After their release from the hospital, our interviewees attempted to pick up their lives at the point where they had been interrupted by polio. Most returned to school and were able to keep up or catch up with their classmates. However, as Dick Owen noted, "Back then (in the 1940's), of course, architectural barriers were not of interest to anybody, not even in a school building." Therefore many polio survivors, particularly those in wheelchairs, experienced difficulty because of lack of accessibility. As illustrated by the following passage from our interview with David Kangas (Shoreview), even university campuses were unlikely to be handicapped accessible:
I was really quite naive about going to college and was surprised to find that the university wasn't accessible for a person in a wheelchair. But that was 1955, and that's the way it was then. There were steps all over the place, and it wasn't like high school where I had a group of friends to carry me around... Many times I had to get a bunch of volunteers or just recruit people as they were rushing from class to class, and sometimes they would say, `I just don't have time. I can't help you.'
Nearly half of those we interviewed had surgery at some point after their initial illness. In fact, the 15 interviewees who reported having surgeries underwent a total of 40 surgical procedures. Gail Bias of Avon had six polio-related surgeries and recalls the surgical experience all too well:
I remember getting scrubbed with antiseptic the evening before my surgery. Once you got back to bed, you weren't supposed to get up again until your surgery. Then at midnight they'd come into your room and put this red vest on you. That meant you were all prepared for your surgery. They'd actually tie it on so you couldn't get it off. The next morning, you'd hear the cart coming down the corridor. You'd hope the cart was coming for someone else, and if it went past your door you'd breathe a little bit easier. But then your door would fly open, and you knew the cart was there for you... and then you just got on the cart. You didn't fuss... The operating room was always cold, and you'd have to crawl off of that cart onto that cold operating table. They'd put these big leather straps over your leg and tighten them up... I remember lying there terrified and thinking that they were going to cut my leg open, and I wasn't even asleep yet.
Many of those we interviewed told us that they experienced problems with social acceptance after their bouts with polio. These problems were particularly common during adolescence, and several found adolescence to be a very difficult period. Since adolescents are often rather intolerant of those who deviate from what they consider to be the norm, either in behavior or appearance, it is not surprising that those with obvious physical differences would find their adolescence to be traumatic. As Sharon Kimball noted, "Just being 14 is difficult enough, but being in a body cast sure complicates things."
Some of those we interviewed told us that they still occasionally feel self-conscious about their appearance. However, this is likely more a minor cause of embarrassment than a major source of anxiety or concern. Actually, it was our perception that the majority of our interviewees had an overall sense of satisfaction with their current lives, and any left-over "scars" seemed more physical than psychological. Even those who spoke of childhoods lost due to illness, hospitalizations, surgeries, and braces typically did so with surprisingly little bitterness. The fact that so many of our interviewees are happy and successful speaks volumes for the resiliency of the human spirit and should give optimism to parents who are raising a child with a disability or chronic illness.
About one-third of our interviewees are experiencing polio's late effects, or post-polio syndrome, the latest of polio's mysteries. Of unknown causation, this disorder typically begins about 30 years after acute polio and is characterized by unexplained joint and muscle pain, progressive weakness, and fatigue.
Of those experiencing post-polio problems, some take medications or attempt to manage their symptoms through exercise. A few have had to begin using or return to the use of canes, braces, or wheelchairs. Accepting the need for such aids has been a difficult adjustment. Since many worked so hard to overcome and succeed in spite of the effects of their initial bout with polio, just accepting the fact that they are now "disabled" and have limitations has been very difficult and required a totally new mind-set, one recognizing that post-polio syndrome is something to be lived with, not overcome. The "just do it" attitude that served polio survivors so well no longer works. Rather, overdoing and pushing themselves past their limits is now only likely to cause further weakness and make their situations worse. As Jenny Williams of Paynesville noted ruefully:
...our parents told us we were just like everyone else, and if we wanted to do something, we could do it. It might be harder for us, but we could do it. I think we just got that in our brains, and it's hard for us to accept that we have limitations now, and there are things we can't do. Our parents always told us, "You can do it; you can work around it; you're going to get better." But what I have now is not going to get worked around; it's not going to get better. In fact, it's probably going to get worse, and that's scary.
Several of those we interviewed, including some with significant post-polio problems, were able to identify positive outcomes as a result of their polio experiences. These "silver linings" often relate to a perception of increased acceptance of or sensitivity to the problems and needs of others. Those in the helping professions often felt that their own disability made it easier for them to gain acceptance from and relate to their handicapped patients or clients. As Gail Bias, a social worker, noted, "I find that handicapped people, especially children, seem to relate to me very well. There's sort of a natural connection there..."
Many believe that their polio-related disabilities actually made them more competitive and driven to succeed, not only in their work, but even in their recreational endeavors. Several feel that having polio resulted in them becoming better and more serious students. As Dale Jacobsen, a dentist from St. Joseph, told us, "... having polio made me realize that I needed to pursue a career in which my physical limitations wouldn't handicap me. I knew rather early on that my real calling would be somewhere in academics and that was where I needed to put my efforts." Dick Owen expressed similar thoughts and believes that contracting polio and his subsequent disability were major factors in his becoming a physician. In fact, he stated, "...it's just a fascinating thing to think that perhaps polio changed my entire life's course."
In his book, A Whole New Life, Reynolds Price makes a similar point. Price believes that becoming disabled, be it from an accident or illness, results in us becoming different people who have very different life experiences than would have been the case without our disabilities. Thus, the random event of coming into contact with the wrong person or being in the wrong place at the wrong time changes one's life from that point on and sends it in a totally new direction.
I agree with Price, and like Dick Owen, I've been fascinated by this thought. I have many times wondered what my life would have been like had I not contracted polo in 1953. How did that event change my life? Was it changed for the better or the worse?
The easy answer, of course, would be to say that it was changed for the worse, and I have often fantasized about traveling back in time and warning my mother of my impending illness so that she might somehow have prevented it. Yet, given that chance, would I take it? Would any of those whose stories are included in the book take their chances at totally living their lives over? Perhaps some would, but I think the following passage from our interview with Mary Ann Hoffman (Menomonie, Wisconsin) expresses the thoughts of many of us:
I've thought this through because I do a lot of work with the grieving process, and if you'd say, `Well Mary Ann, you'll be able to run and do all sorts of things that you've never been able to do,' I'd say, `Yeah, that'd be great.' But if I had to go back and not have the same life's journey, I think I'd say, `No thank you.' It's been 45 years, and I like where I've gone and where I've been. I don't like the disability, but I do like my life and the life's journey I've had.
Edmund Sass, Ed.D,
principal author of
Polio's Legacy: an Oral History,
is Professor Emeritus of Education at the College of St. Benedict/St. John's
University, St. Joseph Minnesota.
Last updated March 16, 2014.
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