It begins in a little town called Hearst in Northern Ontario. I am six months old and my left leg moves very little. The diagnosis is polio. By the time I was a year and half old I had already had a couple of surgeries at The Hospital for Sick Children. I travelled with my mother. However, because she had two twin boys that were 18 months older than me she had to leave me in the hands of medical professionals in a big building. I do not recall that very well; at least not that time around.Therapy was needed and I ended up at Thistletown Rehabilitation Hospital where there were many other children with polio. I was fitted with a full length brace and was discharged eight months later.
Mom came to get me and another ride on the train was an adventure for a two year old. My mother told me that she stood me on the seat and I began to play in a man's hair that was opposite me. Apparently he turned around and saw me with my little brace and asked what had happened. Mom told him I had had polio and was just returning home after surgery. He gave her $10.00. In those days that kind of money was like a thousand dollars today. Thus my first journey after polio would begin.
Apparently my leg got somewhat stronger after one year of wearing the brace and I was able to walk without one; until many years later. My leg was still smaller and shorter but I was able to function relatively well considering that there was still some weakness. I wore a lift on my brown orthopedic shoes. How I hated them with a passion! But I had no choice at the time...
We moved to Kirkland Lake when I was 6 years old. Dad had bought a house close to the schools in the area; so that it would be easier for me to attend classes. At the age of nine I remember "the travelling clinic" coming to my hometown. It was advised that knee surgery was necessary. Parents did not question medical professionals then. They handed you over in the hopes that they could fix whatever the problem was.
This is where my very first recollection of hospitals begins. I remember going to a big place in Toronto called Sick Kids. Mom came with me and the nurses gave me a pair of white pajamas with a pink stripe on each side. Who does not remember those heavy silver wash basins and cups, the horrible pink stuff that was supposed to be toothpaste and of course the cold silver bedpans? Sometimes we were lucky enough to have a warm one brought in if the nurse was kind to you.
Surgery was performed on my knee by Dr. Salter and when I woke up I remember the big cast around my leg and up to my waist. I don't know who cried more, me or mom. A nurse gave mom some juice and me a needle with some clear stuff in it. Before you knew it I was off in “lah lah” land for a few hours without any pain. I had a doll and the nurses gave me some gauze so I could put a cast on her too.
I was given crutches and I would go from room to room in order to meet others like me. A little girl had a cast on her arm and she was trying to feed herself ice cream. I went to help her and heard a nurse cry at the door. She was watching me feed the girl who was a burn victim. I can still remember the smell of her skin.
Once again I was sent to Thistletown. This time I remember it well. Rather than wearing pajamas we had little starch dresses donated to the hospital for the "polio cripples"; as we were often referred to. Whether it was summer or winter the nurses would dress us all up. Then they would put my bed out on the patio for fresh air. This was part of the therapy I was told. Sunshine or snow, it did not matter the weather. I recall being on a toboggan with a nurse taking me for a slide down the hill behind the hospital. School was part of the day as well. I was able to keep up with my studies. The following year Dr. Hall operated on my leg but this time I went home with a much smaller cast.
One of the highlights of my summer was attending Northwood camp. I looked forward to the green duffle bag in the mail. I knew this was a special time for me and I made many good friends, some I am still in contact with to this day.
Often most of us would cry as we didn't want to go home as we were having so much fun! One summer I was with the junior girls and there was extra space in the following group of seniors. I was asked if I would like to stay for another three weeks. Of course if mom and dad said yes then there would be no hesitation on my part. Imagine having a five week holiday at camp! I thought I had died and gone to Heaven!
In grade one I remember the nun hitting me with a pointer; all because I had chewed the eraser off the end of my pencil and eaten some of the wood. It did not matter if I was disabled or not. This was the punishment no matter who you were. To this day I cannot look at a pencil without remembering the nun hitting me. Children become traumatized very easily. I just could not fathom why someone who was supposed to be God's helper could do such a rotten thing to a child? I have never forgotten it. I still have a class picture of me standing next to Sister Ste. Lucy and I am smiling. Am I covering up what she did to me? I do not know.
Grade eight was a year to remember. A classmate kicked me in my polio leg as I was skipping rope. My sister took me to the director of the school, Mother Superior, but to no avail there was no compassion. We were told to stop tattling and to go back and play. The girl in question never apologized but I do know that she became a nurse later on. So I am pleased to see that she is now helping people rather than hurting them.
In grade nine I wanted to go to a private girls’ school as I felt it would be easier for me. The nuns let me use the elevator along with another polio survivor. We still had chores like everyone else. A classmate decided to make fun of the way I walked. She would mimic my limp and laugh at me. I did not dare report her to Mother Superior. I remembered my previous encounters...
Life went on and after another year in private school I ended up having surgery on my polio foot.It kept on rolling over to one side and eventually I had it fused. Thus a brief encounter with what would later become known as Post-Polio syndrome. The condition existed then, but the term did come into being until the late 1980's.
My knee began to give me problems in my late teens. At this point I had left the private school and I continued my studies at Kirkland Lake high school. Going up and down the stairs was a challenge. My knee would buckle out from under me. Surgery once again was recommended. It took ten months for the bones to heal properly. I was transferred from St. Joseph's hospital in Toronto to the Kirkland Lake Hospital. My cast once again was big, and it was called a "hip spika".
One day I was wearing a nylon nightgown and a priest came to see me. I felt rather uncomfortable and asked him to hand over my bed jacket. He said it was not necessary and that everything would be just fine. I was so shocked that I could not even think of pulling the sheet over my chest. I don't remember what we talked about. I was trying to make eye contact with him but his eyes were wandering elsewhere. I felt like I was being visually raped. My mother was livid when I told her but dad being a staunch Roman Catholic would not make waves with the church. But I highly suspect mom phoned the rectory and gave them a piece of her mind. That priest never came back!
I was fitted with a long leg brace at age 19 as being in the cast only mademy muscles weaker. I was never able to ditch this metal apparatus again. I graduated from college with an honours diploma in Early Childhood Education.
Eventually I married my husband David and went on to have two wonderful sons. James is 32 and works for Sprint in the computer department, lives in Missouri and has four children. His brother Lance is 30 and married. He is a police officer in Windsor. David and I just celebrated our 35th wedding anniversary.
Sports for people with disability were an interest for me and I competed mostly in field events and swimming; as I had won several trophies and medals in these events. Taking part in those activities as an adult was important to me and I encouraged others to do the same. One year I tried downhill skiing with outriggers (crutches with mini skis under them and a regular ski boot and ski on my good foot). I enjoyed it very much until I took a nasty fall and almost broke my leg. That was the end of that expedition! I ended up missing work for three weeks. I never skied again as this was a lesson well learned.
My involvement with Post-Polio Canada began in 1985 or so I recall seeing an article in the March of Dimes Advocate about the late effects of polio. Years later, after attending some conferences etc… I quickly learned that this would become an ongoing interest. George Livingstone and I decided to start up a Post-Polio support group and eventually decided to have a conference.
Before you knew it my so called "good foot" began to drop. I could not understand why. I was referred to the West Park Clinic. I was told it was Post Polio Syndrome and I was told to wear a short brace on that side. I was in my early 40's. Grab bars were installed in my bathroom plus a chair glide to the basement. The use of a scooter would assist me in my daily life.
At least my symptoms were not M.S.; as I had feared, or some other neurological disease. I was able to breathe a sigh of relief as I understood that it was the "polio curse", once trying to take over my body. I eventually gave up my job as a pre-school teacher as it just became too much for me to handle.
One of our polio friends was having difficulties breathing and with the knowledge we acquired about this condition we managed to convince him to attend the West Park Clinic. We recognized that his symptoms could be a sleep apnea and it needed to be addressed a.s.a.p. It took months to convince him but once he agreed to go it was in the nick of time. He was fitted with a Bi-Pap machine for night time and thus our group was able to assist and save his precious life. He is with us today and helping with our newly reformed Post-Polio support group.
We have been pretty active over the last two years. Our conference with Dr. Fred Maynard in 2010 was quite successful and now we are planning one on Living with a Disability in October of 2011. Several of our members have more difficulty with the late effects of polio than others but the best thing is that we understand each other.