By Cindy Bernstein aka Mazzy
It is November of 1956 and it is a cold, dreary month, as often November is in northeastern Pennsylvania. Even as a little girl, 7 years of age, I always felt uncomfortable during the month of November. This particular November proved to be one I would never forget. It was the month and year I was diagnosed with Polio.
I was born on April 28, 1949. I was one of seven children my parents brought into this world, me being their fourth child. My oldest brother is Gene who I looked up to as my protector. Next came Ronnie who I never knew for he died before his first birthday. My first sister was then born, Beverly, who also had polio when she was only 8 months old. Little is known of her experience although she and I do share the same atrophy in our left legs. Neither of us understood why our mom remembered little of that experience. All we know of it is that when she started to crawl it was noted she was dragging her left leg in doing so. It was soon found that she'd had polio. Then along came Eddie who had rheumatic fever as a child. My entrance into the world came after Eddie. Then after me, two more sisters, Debby and Lisa were born.
While my mother was pregnant with me, my maternal grandmother had passed away from a stroke. Before grandma's death she asked mom to please name me "Cynthia" should I be a girl. Grandma had recently seen a movie starring the then young Elizabeth Taylor who played a sickly teenager and the movie touched her. Ironic to me, really, since mom said I was a "sickly" child from birth. Anyway, I came into this world as Cynthia Ann. Mom gave me grandma's name as my middle name.
I also happened to be born on my paternal grandmother's birthday and I remained extremely close to her until her death at the ripe old age of 102. Her name was Amelia and she taught me much about life and surviving whatever it may throw your way. Amelia was truly our "matriarch" and was loved by everyone in our very large family. She was one of those women who lived her life with the belief that if "life throws you a lemon, you make lemonade" and always, by her actions, showed me how to make the best lemonade possible. I cherish her spirit and give thanks for having had her in my life.
I had just entered second grade in the fall of 1956. I went to a Catholic School that was a couple of blocks from our home. For the most part I was a quiet child although the nuns said I had a stubborn streak. Sometime in November I came down with yet another sore throat. I'd been having throat problems repeatedly, our family doctor said my tonsils would have to come out. While I spent the earlier part of the month trying to recuperate from another bout of tonsillitis, a fever appearing and muscle aches following, mom and my doctor decided to postpone the tonsillectomy until I regained some strength.
Toward the latter part of November my fever subsided and although I still felt weak I dared not let on to mom. She took me gingerly over to the doctor's office one cold, drizzly Saturday afternoon. He checked me over and found my fever gone. Thus I was allowed to go along with mom to the downtown shopping area. Even though the weather was cold and damp I thoroughly enjoyed going into all the shops with mom.
Come Monday, I was supposed to return to school. I had crawled into mom's bed during the night, not feeling well, although she didn't know the reason. Daddy, who was a coal miner, was away in New Jersey at the time trying to find work because the coalmines in Pennsylvania were closing down. I awoke to her calling up the stairs for me to wake up because I had to go to school. I remember being groggy, trying to climb down from what I thought was so high a bed, and falling as soon as I put my feet to the floor. Mom yelled up the stairs "what happened?" and I told her I just fell getting off the bed. I made my way to the top of the stairs and then I completely lost it. I don't remember exactly what happened then but I remember finding myself in a crumpled heap at the bottom of the stairs and mom being rather hysterical. The next thing I knew I was on the couch and mom was calling the doctor to come to the house. When he arrived he checked me over and vividly I remember him trying to sit me up, asking me to place my chin to my chest, which I could not do. Although I don't recall this, mom said at that point he told her he thought I had either polio or spinal meningitis and that she must get me to the hospital immediately. It's all kind of a blur after that.
I recall the quarantine hospital in Wilkes-Barre Pennsylvania that housed only a small number of patients. At the time I was admitted, I only recall one other patient, a baby who had whooping cough. I'm not sure what happened to that sweet little baby girl, but a day came that I no longer heard her cries. I recall the elderly couple who cared for me there and the whirlpool tub, the hot wet woolen packs they wrapped my legs in (which smelled horrid) and how Christmas (a month later) was wonderful because Mom, Daddy, Bev, Eddie and Uncle Bill all were able to come to visit with me.
Shortly after the new year I was transferred to a state crippled children's hospital.....the "big house" as we kids called it. What a scary place that was to me. It looked so big and uninviting. I was in a ward that housed 24 of us kids. The baby ward was right behind ours. I have only vague memories of living there....the first months being the most sketchy in memory. I was paralyzed from the waist down, my feet strapped to a footboard, and I mostly spent my days/nights flat on my back. I know I was "schooled" and we had Sunday religious services where our beds or wheelchairs were taken into a room where we participated in a protestant service. It was there I learned the song "Jesus loves the little children" which I loved and it sustained me at that young age of seven. I still remember happily singing "Jesus loves the little children…all the children of the world…red and yellow, black and white, they are precious in His sight…Jesus loves the little children of the world." I will surely never forget it.
As months passed I progressed a bit and I have more vivid memories of those times. I remember well when I got to be in a wheelchair. Oh those wheelchair races in the sunroom were such a blast and such freedom for those of us who spent so long a time bedridden. I still remembered my Catholic upbringing and prayed the rosary nightly. A little girl in the bed next to me (during the time I was still unable to walk) used to snatch my rosary beads off my headboard nearly every night. Until this day I credit her for getting me to walk because one night I was so distraught at her stealing yet another set of rosary beads that I somehow was able to get out of bed, stumble the few steps to her bed and snatch them back. I still have that same set with me to this day, or at least the pieces of it that remain. Of course, the next morning she snitched to the nurses that I got out of bed and "walked" …a blessing in disguise, as this was my turning point. The hospital staff, now knowing I had the ability to walk, promptly put me in physical therapy on the parallel bars and fitted me for braces to my waist. Once I mastered that I was soon on my way home.
HOME… I should have been happy but I was terrified to be going home. The hospital and children there were now my family. I had just about forgotten who my real family was. To top it all off, my family had now moved to Passaic NJ which was a foreign country as far as I was concerned. I didn't know how to fit in. My siblings, Gene and Bev and Eddie weren't there. Gene was in the air force at this time. Bev and Eddie stayed behind in Pennsylvania to finish their high school years, living with our Uncle Bill. My younger sister, Debby, was born in 1956, the year I got polio, but I barely knew her. Plus this was city life in New Jersey, nothing like what I'd known prior to my hospitalization. I have many bad memories of these times and would rather not share those with you. Suffice it to say it was a very difficult adjustment period in my life. I strive to focus on the positive, leaving the negative behind.
But I survived those years. As a teenager I discarded my braces and pretended I was normal. I learned to put on an air of confidence although I was terribly timid and insecure inside. At 19 years old, I moved to Texas where my oldest brother Gene was living. The next 19 years I became "me" or who I thought was me. Although life itself has trials and tribulations, for the most part my life was normal during those years. I married at the age of 21, had my son Scott in 1970 and my daughter Tanya in 1975. We were a "family" and I relished my roll as wife and mother. Unfortunately, my husband and I didn't quite share the same happiness and the marriage ended in 1977. In 1980 I married again and life was once more a "bowl of cherries" for me. Then in 1986 I started having problems. I began falling a lot, chronic fatigue became a constant companion (I had been extremely energetic up until then) and I began fearing I was facing a new illness. But NO… this was just the polio dragon rearing its head again, only this time it had a new name. After numerous doctor visits and a battery of testing, I was told I had post-polio syndrome in 1987 and my entire life went through a metamorphosis.
I had already been married twice. My second husband decided it was best we move back to Pennsylvania so I could be close to my family. He left me shortly after this move, unable to cope with my ever-increasing problems. The next 11 years were struggle, struggle, and struggle. I was trying to find my place within my biological family again and not doing too well at that. I became more and more physically and emotionally drained, and very depressed.
In 1991 I had to quit work and go on SSD. In 1992 I met a man who fathered my third child, although he and I never married. My place within my family was getting harder and harder to deal with. In 1993 I gave birth to my son, Tyler, who I raised alone for the most part, through his early toddler years. The cold, harsh Pennsylvania winters along with a baby to cope with accelerated my PPS symptoms. Living on the second floor of an apartment dwelling also made things quite difficult, especially when I discovered that a cane was no longer enough to get around with. Neither were the brace or forearm crutches after that. I started using a manual wheelchair in 1996. The following year my arms began giving out and I was prescribed a powerchair. The battle to get out of that second floor apartment was the fight of my life at the time but was won with the help of some very dear friends in the post-polio support group I had become a part of.
I also drifted emotionally away from my family as I discovered their inability to face my ever increasing PPS symptoms. I became more wrapped up in dealing with both my health problems and my newfound single motherhood. I became so despondent, so depressed. Were it not for my daughter Tanya I think I would have totally lost it. She, and she alone, hung in there with me which was no easy task considering she was only 17 at the time I gave birth to her new baby brother Tyler.
But life goes on. We know not what is ahead of us. We can only learn from our past and use that wisdom to draw strength to carry on during those trying times in life. I've been blessed in many ways and I'm grateful. My daughter Tanya is still a most devoted offspring of mine who I cherish. Tyler is a healthy, happy child. My oldest son Scott is happily married and, together with his lovely wife Melody, has given me two grandsons, Austin Chase and Holden Reece.
I have remarried once again and my husband, Bill, is a kind, caring man who I feel blessed to have found. He is a man of great character, integrity and strength. I never thought he existed but we are often surprised in life, are we not? There is always a silver lining behind every cloud and I've found this to be true time and time again.
Polio has been part of my life for a long time now. Post-Polio Syndrome has reminded me of this. Disability has become a word I oftentimes get tired of but I know so well I must deal with. I have met many others, like myself, and am so very proud to know them all. Although I never looked upon myself as anything special I sure do look at my PPS friends in a different light, for they are truly the stars that shine in my darkest nights. I also look gratefully at my sister Bev. As I mentioned earlier on, she too had polio. She never complained and she persevered through life with a beautiful, caring and loving spirit. She was and is a perfectly wonderful roll model in my book. Growing up I always admired her greatly, always wanting to be just like her. She remains an encouraging supporter who always picks me up when darkness overshadows the light.
"Life Is Good" is something I always believed. It was the mantra that my husband Bill repeated to me often when first we met. It was a bit difficult grasping it at the time because my life before Bill was akin to a bad scene in a rather scary play where I was cast in the leading role. Nonetheless, each morning I awoke with a prayer and tried to find something good about the day to focus on. It paid off, this positive thinking, and when Bill brought my children and me to Virginia I found that "Life Is Good" indeed. I am once again in that role I love so much of wife and mother. It's a bit different this time around since I'm playing the part from a wheelchair, but it's still as rewarding as it's always been. So I leave you all with this, something given to me in a cross-stitch when I first embarked on adulthood. Little did my dear friend, Paula, realize how it would sustain me through the years. "Happiness is not something we see, like a rainbow … nor something we feel, like the heat of a fire … happiness is something we ARE."
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