An Abled Life: Challenging the Limits of Polio

By Thomas C. Wilczewski

Tom Wilczewski was stricken with polio in August of 1949, two months before his fifth birthday. He was confined to an iron lung for over one year.
In 1963 he graduated from A. Harry Moore High School, in Jersey City, New Jersey. After graduation he sought employment. It was a time when accessibility for the disabled was not part of societies concerns. He was given many excuses why he could not be hired. The underlying factor was he sat in a wheelchair.
After much disappointment in seeking employment he started an engraving business with his brother Ed which they successfully operated for over thirty five years.
November 27, 1984, was cold and dreary. On that day the life that Tom knew came to a screeching halt. An unscrupulous and incompetent construction crew that had been building a condominium next to his house had undermined the foundation of the home and his business.
The family home and Toms business were destroyed. Tom in his wheelchair with his brother Ed and their nearly blind father barely escaped being trapped in the crumbling red brick dwelling.
The Wilczewski family fought their way back from this devastating blow---Tom with his brother Ed started their business over again at another location in their downtown neighborhood.
The high point in Toms life was marrying Antoinette who was equally accomplished and like Tom had polio.

• Language: English
• Publisher: iUniverse
• Release date: Apr 27, 2018
• ISBN: 9781532043338

Thomas C. Wilczewski

Thomas C. Wilczewski was stricken with polio just before his fifth birthday. He graduated from high school in 1963 and established an engraving business with his brother that operated for nearly thirty years. Wilczewski and his late wife, Antoinette, were married in 1991. He enjoys watercolor painting and has become an award-winning artist.

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Copyright © 2018 Thomas Wilczewski.

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The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

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ISBN: 978-1-5320-4331-4 (sc)

ISBN: 978-1-5320-4332-1 (hc)

ISBN: 978-1-5320-4333-8 (e)

Library of Congress Control Number: 2018903221

iUniverse rev. date: 04/25/2018

Love and gratitude to my parents, Alice and Charles;

my brothers, Stephen and Edwin; and my uncle Leon,

and

everlasting love to my wife, Antoinette, my delicate flower

Contents

Preface

Chapter 1   The Little Red Fire Engine

Chapter 2   Hopalong Cassidy Rides Again

Chapter 3   Count Ludwig of Gammontown

Chapter 4   Do Your Best—Adios

Chapter 5   Uncle Patsy and the Galloping Reindeer

Chapter 6   How I Spent My Summer Vacation

Chapter 7   Brotherhood Tax

Chapter 8   Right-Arm Repair

Chapter 9   Not Quite Done

Chapter 10   Outside the Circle

Chapter 11   A Beginning

Chapter 12   Fate Steps In

Chapter 13   Turning Point

Chapter 14   Thanksgiving

Chapter 15   The Day the Digging Stopped

Chapter 16   Collapse

Chapter 17   Refuge

Chapter 18   Ash Wednesday

Chapter 19   Restarting Business

Chapter 20   Heads Up

Chapter 21   Q&A for the Plaintiffs

Chapter 22   Trial—First Day

Chapter 23   Nothing Personal

Chapter 24   Life Changes

Chapter 25   Where Credit Is Due

Author’s Note

About the Author

Preface

In the 1940s and ’50s, the polio epidemic was widespread in the United States. No one was safe; adults and children were stricken by this potentially deadly virus. In August 1949, two months before my fifth birthday, I became a victim of polio.

Around 2004, I started writing about what had taken place on November 27, 1984, when I was forty years old. I was concerned that what had happened to my family and me on that day eventually would be forgotten. I felt this way for more than twenty years and knew that if I didn’t write it down, the facts would be lost—and, with them, part of the Wilczewski family history.

I’d never taken any notes, but having a very good memory, I was able to recall many details. I also kept a scrapbook of newspaper articles describing the events of that day, as well as many legal documents that were invaluable as reference material.

After several years of writing and rewriting, I finally had recorded what had happened. Several of my friends read my manuscript and thought the story was compelling. My wife had helped me with sentence structure and grammar during my attempt at writing. After reading it over a few times, she thought it was concise and to the point but felt there was more to tell. I read and reread the manuscript and also felt something was missing. Although it was a dramatic story, it did seem incomplete. I needed to be more open and write about my life before and after that nearly fatal day.

It was very difficult for me to write this story because I am not a writer. I tried to tell it as if I were speaking to someone who might have asked me, What happened? I had no scheduled time set aside for writing. I collected my ideas on small pieces of paper throughout the day and sometimes at night. My motivation came from somewhere deep inside. I wanted to tell my family story, but I also wanted to offer encouragement to those who are struggling in this life, letting them know that with perseverance, hope, and a little luck, we all can experience some degree of happiness and self-fulfillment.

I would not have completed this book if it were not for the encouragement of my beloved wife, Antoinette. She believed in me as much as I believed in her.

In August 2016, I finally finished writing my manuscript. Antoinette read it and smiled with approval. I asked her for a title. Without hesitation, she said, An Abled Life.

1

The Little Red Fire Engine

When my fingers grasped the side of the mattress, the starchy bedsheet pressed against my hand. A wooly green blanket tucked tightly on each side of the mattress made it impossible for me to raise my arms from under the covers. Along each side of the bed were railings that defined the boundaries of my coffin-like space. I had no idea why I was in this strange bed or where I was. I wanted to go home. I looked up at the cracks in the white ceiling above and at the stained wall tiles that surrounded me. My neck hurt as I turned my head toward two tall men dressed in white, who came in the room and stood beside me. They started speaking to me, but I just stared at the ceiling, not wanting to talk or hear what they were saying. An electric current of fear ran through my body. I remained still, saying nothing, hoping they would go away. After a short while, another man in white came in the room. He spoke to me in Polish, a language I did not understand but recognized from hearing my parents speak it whenever they didn’t want me to know what they were saying. They assumed because I didn’t reply to their questions and my name was Wilczewski, I must speak only Polish. I continued my silence, and he left the room.

The wall next to me had a row of large windows that looked out into the hallway. Peering through the windows were two figures dressed in white gowns and face masks. I knew immediately my ma and daddy had come to take me home. I stared, waiting for them, but they did not come in the room.

Earlier that day, at home, I’d sat on the floor in the parlor, surrounded by my toy soldiers. I told my mother that I didn’t feel well. She touched my face and felt the heat of the fever building inside of me, and she gently held my arms as she guided me to the couch and slowly helped me to lie down. She put a pillow under my head and once again touched my face with her cool hand. I didn’t want to lie there; I wanted to get up and play with my toy soldiers that were lined up on the floor, waiting for me to command them into battle, but I was not able to sit up. When I tried to move my arms and legs, I ached all over. My head rested in the well of a sweat-soaked pillow. I was tired and could not move my body. It was hot on that day in August 1949. The fire hydrants were open on the downtown streets of Jersey City; kids ran through the gushing water to cool off. The screens were in the windows of our living room—or parlor, as it was then called—letting whatever breeze there was come through, cooling off the room, as well as carrying in the laughter and shouting of the neighborhood kids.

My fever was getting higher. As my mother put a cold washcloth on my forehead, it seemed to warm immediately as she removed her hand. She stood next to me, looking down in silence. I met her gaze and knew that she would make me feel better. When my mother again felt the side of my face with her hand, she said to my dad, Go next door and telephone Dr. Dersh. He has to come here. Tell him Tommy is sick and has a fever. Just like our neighbors, we did not have a telephone in those days, and so my father had to use the phone in the Lehigh Valley Tavern next door.

My father stood up from the kitchen chair and quickly went next door to use the tavern’s phone.

Within an hour, I heard the muffled sounds of footsteps as my dad and the doctor came up the stairs. My mother opened the door and walked the doctor to where I was lying quietly on the couch. He felt my head, touched my arms, and squeezed my legs. He was a somber man who wore a black suit. He placed his black hat at one end of the couch and his black doctor’s bag on the floor. He was a no-nonsense doctor who got his training while serving in the army during the Second World War, and he had an uncanny talent for diagnosing an illness.

Your boy has infantile paralysis—polio. He has to be admitted to the hospital.

Several hours earlier the doctor had made a house call to my aunt Eva, my mother’s sister, who lived several blocks away on Morris Street. He examined my cousin Joey, who was ten, about five years older than me. Joey was very sick in bed. The doctor’s diagnosis for Joey, like mine, was infantile paralysis, but unlike me, Joey would not survive. Aunt Eva and my grandparents lived in one of the many cold-water flats that lined the streets of downtown Jersey City, inhabited mostly by immigrants from Russia and Poland. The run-down brick row house was owned by an absentee landlord, as were many of the houses in those days. They were dirty, broken-down structures, with plumbing that was not maintained properly, causing the cellars to flood with rainwater and sewerage. It was not uncommon for several inches to accumulate when it rained heavily.

Whenever my mother visited her parents, she would bring me with her. While my grandmother heated a pot of coffee on the cast-iron stove, Aunt Eva and my mother would sit at the kitchen table, talking. I liked to sit on the floor under the table with my toy truck and explore. I’d slide my hands all over the floor, look up at the underside of the table, and listen to the talk and laughter from my mother and aunt. On one particular day, it started to rain, and my grandfather put on his work boots and went down in the cellar. He did whatever he had to do to get the water to drain out. After he finished, he came up the stairs, his boots soaked from the cellar water. I sat on the floor, playing with my truck.

It was rumored throughout the neighborhood that, from time to time, hospital waste was seen coming out of a large sewer pipe near the inlet of the Hudson River. Many years later, my brother Ed told me that he felt the sewer water that flooded our grandparents’ cellar probably had the polio virus from the hospital waste.

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The hospital room was cold and had a strong odor that reminded me of when my mother washed the floors at home. I could hear people talking in the hallway, and the sound of their footsteps seemed to bounce off the walls and into my ears. I had fallen down a rabbit hole and was waiting for someone to show me around.

A young intern slowly pulled back the white sheet that covered me and stared at my legs.

Can you move your toes?

I looked down at my pale white legs and moved my toes and then my foot.

Can you move your hands? asked the young intern. Touch your thumb to each finger; try.

I touched each finger of my left hand but not my right. As I responded to each command, the young doctor made a notation on his pad. My arms, legs, and back muscles were being examined and evaluated. I had a severe case of bulbar polio that left my back muscles very weak, causing scoliosis of the spine. My breathing also was affected, which could have made this type of polio deadly.

Polio affected everyone differently; for some patients, only one leg or arm was affected, while for others, their entire bodies were weakened. I was born on October 21, 1944; I would be five years old in two months. I’d never been separated from my parents until now. After the doctor left the room, it seemed to fill with silence, accentuating my feeling of being alone. I no longer felt any fear; I felt no emotion.

One of the tests showed that my breathing was shallow because of my now-weakened diaphragm muscles. I was taken to another room. Because I was unable to raise my head, I didn’t know if there were any other patients in the room. I could see only the ceiling as I was slowly placed into a huge cylinder with rivets all around it. There were hoses coming out of the sides and a compressor that gave a whooshing sound every time air was forced in and out of my lungs, allowing my diaphragm muscles to rest. My head rested on a very small, thin pillow outside one end of the cylinder and the rest of my small, almost-five-year-old body was encased in this torpedo-like monster known as an iron lung. A small mirror was affixed on the rim that surrounded my head, allowing me to see the floor and the shoes of those who were standing near me. I don’t remember being frightened, as I didn’t understand what was happening. One of the nurses probably assured me that this contraption would help me breathe better. I slept, ate, and did all other functions while on my back, twenty-four hours a day. There were two porthole-like openings on each side of the large cylinder that allowed the nurses to put their hands in to aid me in whatever had to be done. The doctors told my mother that I might have to spend the rest of my life in the iron lung if my ability to breathe did not improve.

The thought of being confined to the iron lung for my lifetime was a devastating blow to my parents. They knew the hard realities of life, but this was more than they could comprehend. They did not know what to expect next. My mother started having a problem with high blood pressure, and it became a lifelong medical issue for her. My father, who was a rough-and-tumble sort of guy, later told me that after I was stricken with polio, he became depressed and lost confidence in himself.

Every day my mother would take a bus to the hospital to see me. She would bring a small red-and-white fire engine, about five or six inches long, and very carefully and slowly move it around the mirror above my head so I could see it. My mother was a small, slender woman. Her eyeglasses and slightly curly hair framed her face that looked down on me with a gentle, quiet smile. I could feel the warmth of her love. And once again, for that moment, I knew everything would be all right.

It’s hard to remember day-to-day living in the confinement of that machine. I do remember my mother dressed in a gray jacket and hat; the little red fire engine that she would bring; the white shoes of the nurses, which I could see as I looked at the mirror over my head; and that constant whooshing of the compressor as it helped pump air into my lungs. It’s like a shadow or foggy mist when I try to remember and picture in my mind what my life was like while I was in the iron lung.

I was hit hard by the polio virus and survived, but I had severe scoliosis of the spine, a weak right arm, and legs that were useless. I was very thin and had little stamina. After spending almost a year in the iron lung, the doctors wanted to see if I could maintain breathing on my own without the aid of the machine. The doctors had spoken to my parents, and they waited for the outcome in hopes that I could someday come home. They were absolutely unaware of how totally disabled I would be and how life would change for our family. Being just five years old, I had no idea of what was happening. I had no thoughts of the past and none of the future. I lived from day to day and accepted whatever happened.

After being taken out of the iron lung, I was placed in a room, where my ability to breathe would determine my future. If I could breathe on my own, I would then start to work on building up whatever strength I had left in order to see how much mobility I could gain. I had no idea that this was the beginning of a lifetime of struggle to achieve physical independence—to not have to rely on anyone to take care of me. My physical abilities were limited, but even as a child, I felt determined not to give up. I don’t know why I felt that way, since everything looked so bleak. I only knew that something inside of me said not to give up.

2

Hopalong Cassidy Rides Again

The doctors thought that I could maintain my ability to breathe on my own and live safely outside the iron lung. I was now in a room with another boy, who was about ten years old. It was new for me to be in a one-on-one situation with a kid I didn’t know. He was a wild boy and able to walk around. I didn’t particularly like him because he would sneak