In The Eye of a Dragonfly: The Story of Jan

By Viviann Plenge

One day an agitated stranger approached Jan who was relaxing outside in the sun. He waved a handgun in her direction, and sincerely offered to put her “out of her misery”. After a few moments of hesitation Jan dropped her head a notch to the side, smiled, looked up, and calmly replied, “No thanks, I’ll pass. I’m quite happy the way I am. Now let me ask, how are you?”

• Language: English
• Publisher: BookBaby
• Release date: Mar 18, 2013
• ISBN: 9781626753006

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Plenge

CHAPTER ONE

Putting On My Story

It is still hard for me to talk about the early days with my mother and the family. When I think back, the place I discover for my mother is after I got polio. That was when I was two years old in 1944. Prior to that, I have no real memory of what happened, but I have been told I was a happy and active child who was always trying to be outside, climbing out the window, escaping out the door.

My mother was an everyday person who worked in a factory. She wanted to be important, yet had no exceptional part to her until her daughter caught Infantile Paralysis. With that event my mother gained something that was a little bit different from the neighbors, and she enjoyed the attention. Mrs. DiRocco’s child was sick, so sick that she couldn’t come home, and that fact became my mother’s identity.

In those years, great numbers of people across the country came down with this dreaded disease, and every community mourned numerous deaths, mostly of children. Doctors understood little about it. They knew only the symptoms and clinical features of it, and that it was communicable. Then they carried on with the old way of thinking, keeping patients isolated and still. In those days it was a common belief that when you were sick, you should stay in bed until your sickness went away.

For me, that meant time in the hospital, in what was called an iron lung, a body-sized respirator, which was a large metal tank equipped with a pump. Most patients spent only a few weeks in one of those tank respirators, but I was inside one for quite a bit longer. The respirator frame extended from my neck down. I remember how my head was out but I couldn’t move it, as I was held perfectly still by pads at the side of my head. All I could see was the ceiling above me. I never saw anything else. I heard things and when people wanted to talk to me they would lean over in front of me. But if they weren’t in that visual path I would see nothing. It felt like I was just one blob, all eyes, mouth and ears and I had no concept of anything else. I didn’t know that bodies could walk across the room. They just appeared. At first I was fed through my nose. Later they started to feed me through my mouth as well, and eventually with a spoon. There was a constant whooshing sound of air being breathed through me.

My mother didn’t come out to the hospital a great deal. She couldn’t come out every day or week. I probably saw her every three weeks and sometimes less. Public transportation in Toledo wasn’t great back then, and many people didn’t have cars. The regional transit system had some electric trolley coaches, but routes were limited. So poor Mrs. DiRocco -- what she had to go through just to come and see her sick daughter all the time! It was just tragic! And so my mother finally got to be seen.

I know that doesn’t sound healthy but I’m not sure it was unhealthy. I think a lot of people identify with their story. My mother for a long time held that importance. I think she felt invisible before that. She was just a person without many friends, stuck in a common marriage, and living with her mother and father in-law. The difference came when I got sick.

I seemed to be just putting on my story because at two years of age, you really don’t have much of a story. When I was there in that hospital, what I developed was the ability to adjust. At that age there is nothing. You don’t have the discernment and you don’t have the judgment about what is bad or good. It just is. When you remember back to that part of your life it is a very wonderful feeling, because even if you knew that something felt odd, there was no fear. You just knew how it felt. But now in our lives when we know we don’t feel good, fear comes along with that. So we can’t be present to what we are actually sensing. As a child I learned how to do that, to be present to what things felt like, without judgment. There was nobody there to give me judgment. I had a very wonderful life.

Another reason I didn’t have the same conditioning that most people received was because people around me were too busy. I was in a hospital, and in hospital, nurses only come to make sure that everything is clean, that you are clean, and then they go to the next person in the same situation. Now as I am walking this earth (or more correctly rolling this earth), I have fewer conditioned habits that I had to break in order to continue on this path. That gave me kind of a head start.

Obviously, in the iron lung I was very limited in movement and environment. My environment didn’t change. It was always the same room and the same people, the same everything. I was in an environment with no interaction, so all I did was watch. Even language was different. The actual words spoken were the same but I didn’t have everybody else’s perception of what the language meant. Nor did I grow up with anybody else’s conception of right and wrong, good and bad. I had to find that out for myself.

I’m sure that my mother and father talked to me but I don’t remember that. I do remember some language that happened in the hospital, but there wasn’t much input. I didn’t speak very much because it was very difficult to talk over the breathing part of the machine. When I was able to speak a few words, it had to be on an out-breath. Mostly, I listened.

The only reason I was taken out of the iron lung was because I had a sore, a burn on the back of my neck. The unit’s padding had worn out and my neck was burning on the hot metal. Otherwise, the doctors probably wouldn’t have taken me out so early. When that happened I had been lying there totally immobilized, living in a metal box for three and a half years.

I had been kept in the iron lung because they thought I could not breathe for myself. Then because of the burns, there was no choice but to take me out. The day the nurses tried to transfer me from one respirator to another, they realized that I was breathing just fine. I couldn’t move. My muscles were gone, but I was breathing fine. That meant I no longer needed to be put back into the iron lung.

It was a big deal on the ward when they took me out of the respirator. The whole reason I had been kept in hospital was because I couldn’t breathe on my own. Because I had spent years not moving at all, I didn’t even know I was supposed to move. Then suddenly I was sent home. It was the beginning of a new world for me, a new environment. At five years of age, the change was drastic.

My father was Italian, my mother Greek. I quickly learned that the Italians in my family not only talked with their hands, but they also raised their voices, screamed, and shouted a lot. The Greek side of the family did the same. They all had to be heard. They each had to scream over the screamer.

My parents sounded like they were attacking each other. In the hospital people seldom spoke above a light whisper, so that was the way I was used to hearing words and language. I didn’t realize that I had been conditioned to have a certain kind of sensitiveness. When I started to hear my parents talk, you would have thought that the mountain was roaring.

The house in which we lived had three levels and belonged to my paternal grandparents. The kitchen, dining, and living rooms were on the first floor, bedrooms and bathrooms upstairs. I was kept on the third level because I couldn’t walk anyway. So I kind of lived up there. The only times they ever took me down the stairs they had to carry me down, which wasn’t very pleasant for any of us.

In hospital my bodily functions had been taken care of by bag and catheterization. I had no concept of control until they sent me home at which time potty training started up there on the third floor. Mostly I trained myself. It wasn’t pleasant sitting in wet pants or what have you, so you learn, when you are alone to maintain as long as you can. People’s awareness wasn’t always there either. Nobody ever thought about maybe Jan has to go to the bathroom. It was just when they were around, they were around. Maybe that was training out of necessity. Learning out of necessity was a good thing.

Even though I lived upstairs I could hear my parents screaming and yelling, how chairs would be flying, and glasses breaking. It was a war zone. I guess that was their sense of communication, but mostly for them, there wasn’t much difference between a fight and communication. I soon realized I wasn’t very happy there. It was too noisy, too dangerous, and too much of a void.

When a regular medical house-call came along, my doctor said, you know what? It might be possible to do an experiment. We can move a muscle from here to there, and see if you can get movement back in your hand.

An experiment meant you had to go back into the hospital! I looked forward to doing that because my head was about to fall off. I was then six years old. I had already spent half a year at home with my family and was sure I couldn’t take it any more.

The surgeon warned, This will be an experimental surgery. We can’t promise that it will be successful, but we are willing to try that for you.

I said, please do whatever you can, thinking I would have some peace and quiet and things would stop being smashed all around. But the surgery didn’t take that long. In those days they kept you in hospital for longer than they do today, but I think I was actually kept there for only about three weeks. For a child who was looking for peace, that wasn’t a very long time.

From then on, each time the surgeons came up with something different to try, they called on me, and I was very willing to go along with whatever they suggested. I had no idea what they were doing. It didn’t matter. What mattered was that I would get a break from home.

The result was that all the surgeries were a waste of time, shots in the dark. Maybe it was already too late for me by then, or maybe there was insufficient knowledge about the effects of polio on muscles, and motor neurons. Ultimately, none of those surgeries added one thing to me other than a quiet time to be away from home.

I did realize pretty early that I wasn’t able to walk and that everybody else could, but at that age I wasn’t caught up with what I wasn’t. My sense of judgment was not only childlike, but it was built upon limited input. That went on for a few years until I was nine years old.

By then the disease had a new name, Poliomyelitis, and researchers understood that it was viral in origin, so they began working on a live vaccine. Some of the early vaccinations were unsuccessful, even harmful, but the effort had begun that led to the Salk and Sabin vaccines. An important medical step was on the horizon.

I learned that back in 1921 President Franklin Delano Roosevelt, as an adult, was paralyzed with what might have been polio. Subsequently there has been a suggestion that he actually may have contracted Guillain-Barré, an autoimmune disease that resembles polio. Regardless of his diagnosis, FDR found comfort by bathing in the healing waters at a resort in Warm Springs, Georgia. That is the same resort he later purchased, where he instituted the Warm Springs Foundation for Infantile Paralysis, in order that a rehabilitation center could be built for other victims of the disease. In the early 1950’s, when the epidemic of polio across all forty-eight states peaked annually to about 50,000 new cases, there was no trouble keeping places filled. At that time the incidence of new polio cases in the U.S.A. was twice that for HIV-Aids today.

I understand now that when they locked me in that little iron lung, they wanted to keep me perfectly still to preserve what I had, and help me to breathe. When doctors learned more about polio, they discovered that instead of putting patients in a position where they cannot move, the way to make for less damage to the muscles is to do quite the opposite, to employ hot packing and stretching of the affected limbs. Sister Elizabeth Kenny from Australia, whose ideas lacked credence in a male dominated medical profession, voiced that innovative idea as early as 1940, but it took a long while to change the way things were done in Toledo.

Polio patients who came after me were luckier. Instead of iron lungs, many were placed in rehabilitation units, given physical therapy right away, made to use their muscles instead of saying, no don’t. Many of those later patients were able to walk because their damage wasn’t as severe as mine.

At any rate, everybody agreed that my experimental surgeries had not met with success, that I wasn’t going to recover any muscle movement, so I needed to begin to use what was left. They decided to put braces on me, give me crutches, and teach me how to walk. There was only one place for all that to happen, Warm Springs, Georgia. Another opportunity came for me to find some peace.

CHAPTER TWO

The Price You Pay To Go

If you are nine years old and at home in Ohio, you know that Georgia is not where you live, but it sounded good to me to be a little further away. I had (and still have to this day) little idea of distance. As far as I was concerned, Warm Springs, might have been just outside the house, like the other hospitals were. I was happy to be sent there.

At that time my parents were still not earning even middle class wages and they didn’t have the money to send me away. Consequently, I was sponsored by an organization called The Mothers’ March of Dimes. I remember becoming part of their poster child campaign. They used my situation to plaster requests across the state, to persuade people to save their dimes for donations for polio research, and to provide treatment for children like me at the Roosevelt Warm Springs Institute for Rehabilitation.

The National Foundation for Infantile Paralysis, raised funds with annual charity balls and radio appeals wherein everyone in the country was asked to contribute at least one thin dime per year to fight polio. Eddie Cantor coined the name March of Dimes. Walt Disney created a popular cartoon to help the cause.

It was publicized that a single iron lung cost about the same amount as a new house, and every hospital needed an entire ward of them for polio patients. No one knew the total cost for all the rehabilitation, research labs and other equipment needed. The March of Dimes distributed little pink cards with slots, into which coins could be tucked by concerned mothers, or by anyone who wanted to protect children from the horrible fate of paralysis. Regularly, on the eve of January 31st, willing donors were asked to leave their porch lights lit, so that a concerned mother could come to collect dimes for the cause. After President Roosevelt died in April of 1945, his profile was placed on the silver dime itself to commemorate him and his fundraising efforts. His portrait still remains on the new dimes long after the silver was replaced with an alloy.

It was already six years after Roosevelt’s death when I was sent to Georgia, and I considered that move to be the time when I was born. Later, when someone asked how old I was, in my mind I started counting from when I was nine years old, because that is when my life finally opened up. It became a life, instead of my just being sheltered or hidden, fetus like, either in a hospital or upstairs on the third floor.

When I arrived in Georgia, the weather was warm so I could stay outside during the day. As somebody who had been living inside for years, when I was first taken to the outside, I just couldn’t believe that the world had trees. I couldn’t believe that there were clouds in the sky. Now I felt that the world had magnificence. Prior to then I didn’t know that. Warm Springs was a good time for me, a happy time.

My parents couldn’t come to visit me because they didn’t have the means to travel that far. Although I did receive occasional letters from them, I never felt that I had a family. It was just letters. I never wanted to write back to these people. I mean I didn’t even know the meaning of the words mother or father except that it was what they called themselves when they were around.

Now I was faced with a whole open world, taken into this place that was like paradise. My roommate was a young girl from Venezuela and we got along just fine. I couldn’t speak Spanish and she couldn’t speak English so the communication that we did was through the movement of one’s head, up and down for yes, and side-to-side for no. Granted, it was limited. Once again I was with a person, but there was no real communication. It was as strange for her as it was for me, except I know she missed her family and she wanted to go home.

The journey to having a significant person in my life, somebody whom I really cared about, began at that time when I was nine years old. I had a regular physical therapist whose name was Mrs. Smith. She was probably the only regular thing that I had in my life. Nurses and push boys on shifts, three days on and three days off, didn’t seem regular. Mrs. Smith was the stabilized person in my life. Her role with me was to teach me how to walk.

I got to see her every day for an hour in the morning and another in the afternoon. She was a very unique human being and I think of her always as the first teacher ever to appear in my life.

You know how ducklings view the mother duck. They just go along and follow whatever Mother Duck does and never question it. That’s probably what happened in my relationship with Mrs. Smith. When you think about it, I had two hours a day with her and most all the other times they put me in a wheelchair, pushed me outside and sat me under a pine tree. Oh my goodness! I got to know so many things. I got to know the sun. I got to know wind. I got to know squirrels, flies, butterflies, so many living beings. I was pretty much one very happy little person.

The first week at Warm Springs was the hardest. I turned from what I would have called a vanilla cream looking person to one who looked like a blueberry. I get black and blue very easily. First they would put braces on me. Then they would stand me up and put crutches under me.

Mrs. Smith would say, "now that you’ve got your balance. I’m going to