From the Polio Narratives

 

The excerpts below all come from Polios Legacy: An Oral History (Sass, 1996). The dates in parentheses indicate the year in which each individual contracted polio. Page numbers follow each excerpt for referencing purposes.

To find excerpts on a specific topic, either scroll down the page or click on one of the following: coming down with polio, Sister Elizabeth Kenny, hospitalization and treatment, the iron lung, learning to walk again, using a wheelchair, wearing a brace, polio-related surgery, going to school, and polio's late effects.

On the disease's onset (coming down with polio):
These first three excerpts tell what it was like to come down with paralytic polio. If Richard's recollections sound a little technical, it's because he became a physician and practiced at the Sister Kenny Institute.

Richard O. (1940)
I had polio in 1940. Since I was twelve years old then, I can remember many of the details about it. Polio is an unusual disease in that there are two periods of illness as the virus enters the system. The first is associated with an infection of the nose and throat and sometimes the stomach. I had an illness that lasted for a few days, and I was even ill enough to stay home from school. I felt well the next day though, so I went back to school and carried my newspaper route. The following day, however, I was feeling ill again. I got up for breakfast and then went right back to bed. After an hour or so, I woke up and tried to get out of bed but fell to the floor because my legs would no longer move me, and I was rather limp. I was then taken to the University Hospital in Indianapolis where I was diagnosed with polio (p. 30).

David K. (1952)
I remember the day that I was diagnosed with polio very well. That morning, I was in physical education class at school, and we were out on the football field playing touch football. I noticed that as I was running, my leg would be weak, or sort of collapse under me. I didn't really think too much of it, but then later that day I was playing with the high school marching band at a polio benefit parade in Hibbing, which is about 30 miles from Coleraine where I grew up.  During the march in that parade, my legs again became weak. In fact, they were so weak that I had to drop out of the line of march, and I went back to the
school bus to lie down.

As part of the polio benefit that evening, there were stock car races. They were sending the proceeds from the races to the Polio Foundation. I was feeling pretty sick at that time, so I stayed in the school bus during the races where as the other band members were out watching them. The band director came back to the bus, and after taking a look at me, he decided that he should find a car and drive me home. When I got home and my parents saw what condition I was in, they became very concerned. They called a doctor right away that evening. He came out to the house and made the diagnosis of polio and sent me to the Hibbing Hospital. I remember that I walked into the hospital, and that was the last time I was able to ambulate on my own (pp. 61 and 62).

Sharon K. (1953)
About the first week of August, 1953, I spent a week at church camp. I had a complete physical before going to camp, and I was perfectly healthy, at least as far as we knew. I left for camp on a Monday morning and spent the week swimming, going on nature walks, and doing all the other things kids do at a summer camp. There was a lot to do, and I probably didn't get as much sleep as usual.

I got back to St. Cloud on Saturday, and that's when I began having symptoms. I remember feeling this strange sensation. It's hard to describe, but it was as though my head was under water. There was a ringing in my ears. I had a severe headache, and my vision was blurred. On Sunday, I felt very fatigued. I always sat with my mother in church, but that day, I was so tired that I had to lie down and put my head on her lap. My mom probably thought I was pouting or didn't want to be in church, but that wasn't the case. I just was feeling very ill (p. 112).

On Sister Elizabeth Kenny:
Both of the individuals quoted below met and were directly treated by Elizabeth Kenny. Robert claims to be the first acute polio patient with whom she worked in the United States.

Robert G. (1940)
I don't remember the exact date, but I was laying there, and my mom walked in and said, "I've got somebody here that may be able to help you. This is Sister Elizabeth Kenny." Of course, when she said sister, I was thinking, "What's going on here." But she was standing on the left side of the bed, and she looked down at me and said, "No Bobby, my name is Elizabeth Kenny. The 'sister' means that I am a registered nurse from the Australian Army. That's our  title." I looked up at her, and I remember thinking, "Wow, what a big woman." She must have been about six foot one and weighed close to 200, 205, maybe 210 pounds. So she was one big woman, and oh man! She carried herself like a queen. Her size sure didn't bother her at all.

She looked me right in the eye and said, "I'm here to try to help you. But, before I can help you, I've got to hurt you." Well, what could say? So, she reached across the bed, grabbed my hand, and started shaking it. Then she said, "Now, we'll get started." So she lifted up my left leg and started trying to find out how good or bad it was, and I was damned if I was going to let anybody know how bad it hurt. I mean, I wasn't going to yell, but the next thing I knew, I was crying from the pain. She noticed that, so she put down my left leg, but then she started on my right leg, and a few more tears came. Finally, she let go of my right leg and said, "We won't do anything with your arms right now; I'll come back later this afternoon."

She came back that afternoon and was fooling around with my fingers and hands and arms. Then she said to the nurses, "Do you have any old blankets, completely wool blankets?" The nurses told her that they had plenty of them, and so Sister Kenny said, "all right, get me one, and bring me a pair of scissors." So she showed the nurses how to cut strips out of the blankets to fit the arms and legs, and then she said, "We'll need some hot water; we're going to put the blanket in it, and then we have to wring it dry." Well, they've got plenty of hot water at a hospital, but they didn't have any way to get the blankets dry enough. So, my mother brought in this little hand ringer, and they put it on the side of the tub that they put the hot water in. They put the pieces of blanket in the hot water, then they rung them out, and wrapped me up in them. But they didn't have any pieces of plastic to put over the blankets like they should have, so they took out that good old rubber sheet again and covered me up all the way from my toes to under my chin (pp. 23 and 24).

Ray G. (1946)
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 (pp. 43 and 44).

On hospitalization and treatment:
Arvid's and Sharon's recollections tell the familiar story of isolation and the "Sister Kenny treatment" of hot packs and stretching. Richard's memories describe the "convalescent serum" and immobilization used before Sister Kenny's arrival in the U. S. Neither of these treatments was helpful, and immobilization was probably harmful.

Richard O. (1940)
At that time they had some idea that it was an infectious disease, so I was given what was called "convalescent serum" which was made from the blood of people who had recovered from polio. That form of treatment was in vogue back then. It seems unlikely that it had any effect since the disease progressed to rather pronounced paralysis with no movement in either leg and no movement in my abdominal muscles. I was put in isolation, and I think I might've been told that I had poliomyelitis. However, I didn't know what poliomyelitis was. Nobody told me that I had infantile paralysis, which I would have recognized because Roosevelt was president at that time, and I knew he had suffered significant paralysis from the disease.

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 (p. 32).

Arvid S. (1952)
(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 (p. 145).

Sharon K. (1953)
After the spinal tap was done and the diagnosis of polio was made, I was immediately placed in isolation and told that I shouldn't raise my head. I remember that they put me in a crib! I was nine years old, and I couldn't understand why I had been placed in a crib. It was very degrading. I certainly wasn't going to climb out of bed, nor was I likely to roll over and fall out. In
fact, I could hardly move. As I lay there in that crib, I could feel the virus really setting in. It was like a door slamming shut. I felt like my world had totally changed. To make things worse, it was terribly hot and humid, and of course, that was before air conditioning; I remember feeling very uncomfortable . . .

After a few days, they began whatever form of treatment was in vogue back then. I remember that we had to take some vile kinds of red and green liquids. I'm not sure if I had to take one or both, but I know that when the tray came around, I didn't want to drink either of them. My most vivid memory, however, is hearing the large, wringer washers being rolled down the hall. They used those washing machines to heat up the water in which they would dip green army blankets. Then they'd put them through the wringers and wrap our bodies in them. I believe they did that twice a day, maybe at ten or eleven in the morning and then at about four or five in the afternoon. I was never one to be bothered by the heat, but the combination of the sultry August weather and those hot, moist blankets was very uncomfortable (p. 113).

On the iron lung:
Marilynne R. (1949)
The morning of the third day I was hospitalized, which was the first or second of September, I had cereal, juice, and chocolate milk for breakfast. I remember trying to pick up the chocolate milk, and it fell right through my hand. I felt so bad because I couldn't move anymore. The nurses all rushed in and cleaned up the mess. I remember I wanted the chocolate milk, but I didn't get it. Instead, they brought me a straw, and I drank some juice. After that, some doctors came into my room and had me count backwards, 10-9-8-7-6 for as long as I remember. I was laying down at that time because I was having trouble sitting up.

After a while, they came in and told me they were going to put me in a machine that would make me feel better. I would be more comfortable. I don't think they called it an iron lung or even a respirator when they were telling me about it. But, I remember they wheeled me into this small room, and there was this big machine. I think because my cousin was a nurse and had been trained at the University, I wasn't really afraid of medical personnel. I rather trusted them when they told me I would feel better. I remember they opened the respirator; it seemed really huge, and they laid me on the tray with a mattress on it, and then they slid me through the hole at the front of the big roller part. Then they closed up the collar and told me to really relax. They told me I'd feel much better, and I did. I could breathe more easily.

After that, I think I pretty much lost everything. I don't really remember the sequence of events for the period that followed, so I probably was not too coherent for a while. I do remember being left on the respirator, but I have no idea for how long.  According to my hospital chart, I was in and out of the respirator after the first few weeks. I know I was out of the respirator for several periods of up to five weeks. I assumed that I wouldn't need it anymore, but it didn't turn out that way. I've needed it all my life. I still sleep in it. To me, the time in the respirator is the time to sleep (pp. 55 and 56).

On learning to walk again:
Many, perhaps most, children who contracted polio were told they would never walk again. Like most of us, Robert (Bobby) did walk again. His recollections of this event, however, are more colorful than those of most others!

Robert G (1940)
Getting back to my exercises, one day toward the end of my stay in the hospital, Bill Bell, my physical therapist, said to me, "When we're done with your exercises today, you're going to walk around this table." I told him that I couldn't do it, and he said, "Don't think about it; just do it." Now he wasn't rough or tough or anything, but when he told you to do something, you did it. That was his job. So, when my exercises were over, I walked around the table a couple of times.  Bill said, "See, you can do it." I said, "Yeah, but I was holding onto the table." Well, his response was, "I don't care if you were holding on or not. I told you to walk around the table, and you did it. You're not going back to your room in a wheelchair, your gonna' walk back. I'm gonna' help you, but you're gonna' walk back." He put his arm on top of my shoulder, and I was walking down the hall. I got to this guy named Henry's room (he's the one who gets all the credit for being Sister Kenny's first patient in the U.S.), and Henry said, "Hey Bobby, you're walking." I said, "Yeah, ain't it nice. Bell's helping me." Henry looked at me and said, "Bell who?" I said, "You know, Bill Bell, my therapist." Well, Henry kept looking at me, and finally he said, "Where is he?" And I looked around, and there was Bill, down the hall, talking to a couple of pretty, young nurses. I was walking by myself, and I didn't even know it!  Well, I took three steps forward, then two steps back, and I fell flat on my butt! Henry and I were laughing so damned hard that everybody came running over, because nobody ever laughed on that ward. They all wanted to see what happened, and they were shouting, "Anybody hurt; anybody hurt?" Henry was laughing so hard he was crying, and I was just sitting on the floor laughing. But from then on, I walked. (pp. 26 and 27).

On using a wheelchair:
Getting where one needs to go in a wheelchair has never been easy, but before the disabilities rights movement and the Americans with Disabilities Act, it was often nearly impossible. These two excerpts illustrate this point all too well.

Marilynne R. (1949)
Discrimination against those of us who use wheelchairs lasted a long time. I had a lot of problems with discrimination in the 1960s and 70s. I was asked to leave a restaurant because it bothered the other customers, and I was asked to leave a concert at Northrup Auditorium. A friend and I went to see this concert, and I was asked to leave because of an order by the Fire Marshal. I was ready to and ask the Fire Marshall if he really thought I shouldn't be there. I guess he thought I couldn't maneuver through the aisles very well, but I didn't think I was obstructing anything. Maybe he thought that in case of fire people couldn't get out. It seemed to me that in case of fire I'd be the one to get trampled . . . I left highly insulted! (p. 59)

David K. (1952)
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.' . . .
I had to live in an apartment off campus because not one of the dorms was accessible (pp. 66 and 67).

On wearing a brace:
Edmund Sass (1953)
If you've never seen a Milwaukee brace, it's quite a contraption. The bottom is made of leather which fits around your hips and pelvis and buckles up in front. I wore that part under my pants. There is a long metal bar that attaches to the leather and runs up the front. That goes outside of your clothes. It extends up to your neck where it attaches to a padded chin rest. The chin rest bolts to an additional padded piece that fits behind your neck. And, of course, another bar attaches to that and extends down your back where it connects to the bottom leather. Mine also had a leather strap that fit around my side to hold in my scoliosis. I guess it was the ultimate portable traction device. I wore that thing nearly twenty four hours a day.

I vividly remember the first day that I wore the brace to school. It was the middle of the school day. Apparently I had gone to the doctor that morning to have the brace fitted. My mom dropped me off at the door, and I remember she had tears in her eyes as I walked away. I was determined to be brave, but as I approached the room, I heard somebody say, "Here he comes," and I lost all of my courage. After I took my seat, the teacher asked me if I wanted to say anything to the class. Everyone was staring at me with great anticipation. I think I managed a feeble, "No." I just wanted to hide under the desk or disappear..

For days, maybe weeks thereafter, that Milwaukee brace was the major topic of conversation around the school. It was almost like the other children were delighted to have this new curiosity in there midst. Eventually, of course, the novelty wore off, and things basically returned to normal.

Outside of school, though, nobody knew what a Milwaukee brace was or why I was wearing it. So, I used to get a lot of stares and questions. When I'd tell other kids that I wore the brace because I had polio, they'd often say something like, "Boy are you lucky." I could never really understand that reaction. I guess they meant I was "lucky" that I wasn't dead or in an iron lung. But, it always seemed to me that if I had really been lucky, I never would have gotten the damned disease in the first place.

I got so tired of explaining why I wore the brace that when other kids would ask me about it, I'd say, "Well, my dad's a carpenter, and one day he got careless with the electric saw and cut my head off. The brace holds it on." The looks I got were amazing. What's even more amazing is how many kids believed that's really why I wore the brace!

Jim O. (1948)
. . . I was supposed to wear the brace on my arm all the time, and my mother was very adamant about me wearing it. But when my brothers and I would go off and play, I'd just take the damned thing off and throw it on the ground. At school, I would normally leave it on in the classroom, but as soon as we'd go outside for recess, I'd take the damned thing off again. You know, I think taking it off to play was probably more beneficial in the long run because it allowed me to exercise that arm and build up the muscles that weren't paralyzed. But, I do remember that my mom used to get after me regularly about doing that!

I guess I must have worn that stupid brace on my arm for two or maybe three years. Then some time during the last year that I wore the arm brace, the doctor diagnosed weakness or some other type of problem with my leg, and so I ended up with a brace on my leg which extended from the hip all the way down to my foot. There was a bolt that went through the heel of the brace, and it held the foot and knee immobile so that it could only move up and down but not sideways. So, just about the time I was getting the brace off of my arm, I had to start wearing one on my leg, and I guess I wore that one for another four, possibly five years.

So, I wore some sort of brace until I was thirteen or fourteen,  and I remember that they wanted to do surgery on me too, but my mom wouldn't let them. I can vividly recall a visit to the doctor during which he proposed doing an operation on my right arm that would have basically bolted the arm to the shoulder bone. He wanted to just put a bolt through the bone in the arm and screw it into the shoulder which would have really limited my range of motion. It would have appeared like I had two usable arms when, in fact, one of them wouldn't have been usable at all. Well, my mom listened to what he wanted to do, and she just told him, "No way." Believe me, I've been forever thankful that she refused to let him do it because that arm is in relatively good shape now (pp. 216 and 216)

On polio-related surgery:
Many of those we interviewed underwent polio-related surgeries, most often on their legs and feet. Gail had six such surgeries and as the following excerpt shows, she remembers them quite vividly.

Gail B. (1951)
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.

I remember that after your surgery they would write on your cast what kind of procedure they had done. It was kind of their trademark . . . It was rather impersonal, I always thought, to identify you by your surgery, but that's the way they did it back then (p. 78).

On going to school:
Back in the 1950s and 60s, neither school buildings nor buses were accessible to those with disabilities, and many polio survivors had to go to special schools for "crippled children" or be carried up and down stairs. As illustrated by the third and fourth excerpts below, even those who didn't require special provisions were likely to experience difficulties with social acceptance.

David K. (1952)
I went back to school that fall of 1953, and of course, back in those days, schools were not handicapped accessible. There were no elevators, so in order to get to the upper floors, a crew of several students would have to grab my chair and lift me up the steps. They did make some accommodations in the classroom itself, because they had to move desks around to fit my wheelchair in. There were also some arrangements made where I could stay for some classes on a lower floor, and the lessons would be brought down to me. A student monitor was there to help me, but for the most part, I was just carried up and down the steps.

I didn't like the idea of being dependent and having to rely on people to do this for me.  However, I just had to face up to the fact that it was the only way I was going to get up to those other classes and continue on with my schooling.  For the most part, the guys who helped me were quite willing to do it, but I sure didn't like it (p. 65).

Diane K (1949)
We lived in Manitowoc, Wisconsin, and they didn't have any physical therapy or orthopedic services for me there at that time, so I was sent away to Sheboygan, Wisconsin.  I lived in a foster home during the week and attended the orthopedic school where they had a physical therapist.  I got physical therapy every day. They put me in a hot tub, and I had stretching and exercises.  The physical therapist basically taught me how to walk again.

I was there for about nine months.  It was a very sad period of my life because I was a seventh-grader, and I was missing out on what normal kids do during adolescence. I remember that they had a school bus that would take me back to the foster home after school, and I would just sit there alone all night and listen to the radio.  There was no TV back in those days, of course.

I did get to come home on weekends, but my friends were all busy already, going here and going there.  I couldn't keep up with them anyway.  I remember it as being a very, very painful year for me (p. 154).

Gail B. (1951)
Going to high school was particularly difficult for me. It was such an adjustment to go from a one room, country school where you knew everybody to the high school in town. I had two strikes against me. First of all, I was a country kid, and the kids from town used to tease me about that, but I also wore a built-up shoe and walked with a limp, so I got made fun of quite a bit.

Being different is really hard when you're in high school. I ended up just not participating in a lot of things that I probably would have participated in if it wasn't for my disability. I would have liked to try out for cheerleading, but people made fun of me just for talking about it. So I ended up keeping a lot of feelings inside. I didn't want to go to a dance because I was self-conscious of my limp. I didn't want to have people stare at me as I walked across the dance floor. I hated to have people gawk and laugh at me. I think all teenagers are self-conscious, but when you have some physical disability, it really magnifies that self-consciousness. To this day, I hate it when people stare at my leg when I wear shorts (p 82).

Jennifer W. (1949)
I remember the biggest challenge for me was getting on the school bus. That first step up onto the bus seemed like a mile, and I just couldn't do it. For a while my mother came out, and it was so embarrassing because she would bring out this stool. But I couldn't stand the embarrassment, so my dad and the bus driver (his name was Bill, and I remember him vividly) got together and discussed how they could solve that problem. What my dad did was go out to where the bus stopped, and he dug a trench in the dirt. Bill would drive the front wheel of the bus down in that trench, and that would lower the step down to where it was really close to the ground. Then I could just get on the bus without a problem. And nobody really noticed . . .

Even though my problems with the bus got solved, I think starting school caused some other problems for me. The other kids in my neighborhood had grown up with me, so they knew my limitations. . . But when I got to school, I was with a lot of kids who didn't know about my handicap, and they weren't as tolerant of me. They used to tease me and say things like, "Hey gimpy, you walk like a duck." Even though it hurt my feelings, I think I just used to smile and not say anything, and then they didn't know what to do. I learned that if I didn't say anything back to them, they'd stop. . . Also, I was lucky that I had a lot of kids who liked me, and they would go over to the ones who'd taunt me and say, "Leave her alone. She's nice." and that helped a lot (p. 242).

On dealing with polio's late effects:
Dealing with any disability is difficult, but as the following excerpts illustrate, the development of a secondary disability such as post-polio syndrome is a particularly bitter pill to swallow.

Janice G. (1956)
When I was about 35 or 40 years old, I started having terrible pain in my joints and muscles. I got tired very easily. I went to the doctor and had x-rays and blood tests. I got some pills and had physical therapy. Nothing helped. One doctor even suggested that my problems were all in my head. He said, "Are you sure you don't just think you have all these problems? You don't look sick, and the tests don't show any problems."

Then in 1988, my husband and I went to a football game in the Twin Cities with my brother and sister-in-law. On the way home we drove by Sister Kenny Institute. My sister-in-law suggested that I should call Sister Kenny and ask them for my old records. She thought that maybe my doctors could get some information from those records that would help them understand my current
problems better.

A few days later I called Sister Kenny Institute and asked them if they could send my records from when I had polio in 1956. As I waited for them to find the records, I explained to the person who was helping me that I was experiencing all this new pain, and I was hoping that the records could help explain why. Well, she asked if I had heard about post-polio syndrome. I said, "No, what's that?" She explained that about 30 or 40 years after you had polio, it's like you get it over again. She also helped me get an appointment at the Sister Kenny Post-Polio Clinic.

Thinking about dealing with polio over again was more than I could handle. I just fell apart. I called my sister-in-law and told her what I had found out. I also told my family. I cried a lot. I showed my local doctors my medical records and explained about my appointment at Sister Kenny Institute. They again told me that polio was a thing of the past. I said, "Yes, but I'm here now, and I'm living it again!"

I went to Sister Kenny Institute for my appointment and was diagnosed as having post-polio syndrome. I needed to first accept that I had it and then learn to deal with it. At times it is very difficult to think of the future and what it will bring. I don't want to use braces and walkers and wheelchairs again, but I think the hardest thing for me is to have hand weakness. I didn't experience that the first time I had polio, and until your hands start to become weak, you really don't realize how much you use them (pp. 261 and 262).

Sharon K. (1953)
I believe that the hardest thing for me now is to realize that all of the thought processes that helped me overcome my handicap, the attitudes of, "If it's painful, I'll work through it; if it's hard, I'll work harder.  If there's a task to be done, I'll do it; I don't need any help" no longer apply. That's the attitude that keeps you driving through your therapy to overcome your handicap.  And now, in this part of my life, I have to find a way to accept that if I don't work from seven in the morning to midnight, I'm still valuable.  And that's the hardest lesson of all, because so much of my life has been serving and living up to people's expectations. And now I have to say, "How can I live within my limitations and still be the same person I was?" And that's difficult for me.

I have clear memories of my first therapist in the hospital. She didn't want a whimper or a tear from any of us. We were to be tough and gritty.  I did what was expected. I didn't question, and I got well!  These were my strongest memories of the lessons I had learned.  I needed to have a disciplined life with a no-quit attitude. That was what worked.  But it doesn't work for me any more. Now, I am learning that I must rest when I'm tired.  To work through the point of pain has caused muscle damage.  However, people's expectations of me, (morning meetings, bus duty after a full teaching day, obligations such a concerts and weddings) and my own desire to be part of life's mainstream, combined with my stubborn "I can do it myself" attitude, tend to keep me from putting the limitations on my schedule that I should (pp. 122 and 123).

Jennifer W. (1949)
..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. (p. 249).

 

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The excerpts on this page are from my book, Polio's Legacy: An Oral History   (Sass, 1996). This page was posted by Edmund Sass, Ed. D. and was last updated November 22, 2015. You may e-mail him at esass@csbsju.edu