I had a normal and very wonderful childhood in a small town in PA. Life was good, until the summer of 1953. I was about to start first grade in September, after a Labor Day Vacation in Ocean City, MD. I loved the beach! What we didn’t know was that I had been exposed to the poliovirus, and it was replicating in me. When I got sick, I had typical “flu-like” symptoms of nausea, headache, muscle pains. That passed for the moment, and I had a great end-of-the-summer vacation. I did start school on the first day, but I did not feel well. It was a l-o-n-g day, and by the time I walked home, I was dragging my right leg. I was put to bed, and never returned to school that year. The next day, I could no longer use either leg and had to be carried to the bathroom. By the end of the week, I was in Lancaster General Hospital (LGH) in total “isolation.” No parents or any other visitors were allowed in my room. My parents did get permission to see and talk to me from the hallway wearing protective masks. I do not remember having the spinal tap that confirmed the awful diagnosis of “infantile paralysis.” Also called “poliomyelitis” or just plain “polio”. But, it is in my hospital records and might well have been one of things repressed by a scared little girl alone in the hospital. That diagnosis was to change the rest of my life.
There’s an old saying that when you are dealt lemons, you make lemonade. That’s a little too much for a 5 year old to handle all alone; but luckily, I had a wonderful family who helped me with the “lemonade.” I got polio just a year or so before the Salk vaccine was considered safe enough to be distributed to all children in the schools. This “summer plague” was terrorizing families. Everyone knew someone who had had polio. But, I was the only one in my hometown to come down with this polio strain in September of 1953. My family was “quarantined,” and my brother was not allowed to go to school. There was great fear of polio spreading to others. The clothes that I wore to the hospital were supposed to be burned. But, my mother was a good seamstress and had made them, so they did allow my mom to have my clothes dry cleaned, instead. It was a very hard time for my family. I knew nothing of what they were going through as was having to deal with a lot of things in the hospital on my own. This was before the days of having your family with you when you were a child in the hospital. I had to believe that what they were doing for me, to me, was for the best. There was no one to speak for me, and I felt a sort of abandonment because of the hospital rules at the time. My parents were wonderful and tried every way they could to be with me, and do things for me. I knew my parents and others were sad about what happened to me. I got lots of cards and gifts, and visits when allowed.
In the LGH, I had wonderful nurses who tried to be there and help when my family was not allowed. But, my days were filled with lots of unfamiliar medical interventions. I had my blood drawn more often than I care to remember, and daily shots for some reason. It provided me with a fear of needles that remains today. Back in those days needles were not disposable and so they were sterilized and reused…and dull! My long blond naturally curly hair ended up in knots from lying in bed, and it was cut short by the “barber”. I was paralyzed from the neck down with my arms being spared (or so I thought at the time). I couldn’t even lift my head up. I also thought I was spared pulmonary paralysis (bulbar polio) since I did not have to be put into the gigantic and scary “Iron Lung”, but one sat out in the hall. My legs were wrapped in “hot, wool cloths” that were part of the Sister Kenny treatment. I was given a salt pill with a little molasses (to help it go down) each evening. The “hot packs”, as they were called, were applied several times a day. After about six weeks, I was transferred to the State Hospital for Crippled Children, in Elizabethtown, PA. It was sad leaving LGH and the care of the nurses who had become a second family to me. I had been getting more visitors, and my room was becoming cheery. I even had been allowed to listen a radio somebody gave to me (there were no TVs in the hospital back then). I was becoming settled, and I guess I thought I would soon go home. Little did I know that it would be almost a year until I would be home. And, at Elizabethtown my life was to change yet again, and I would have another big adjustment to make.
I was put into a ward of children who had many kinds of crippling diseases. I have no ideas how many girls were in this “big room” with one little TV mounted near the ceiling at one end of the room. I remember being told that the girl in the bed next to me had Cerebral Palsy. I did not know of any other polios than myself, but I am sure there were others there at the time. For some reason, we were not allowed to have pillows, so I put my little teddy bear under my head at night. He became my constant companion in that hospital. We stored all our “stuff” in a drawer under the bed. I do not remember turning 6 the end of November, but there are pictures me and all the presents I received. I do not remember Thanksgiving. I barely remember Christmas. Although I do remember “Santa Claus” came to visit us in the ward one night. I got a ceramic angel, and it became a treasured possession. I was send cards and got many gifts. I do remember many small presents wrapped by my church Sunday School class. I could open one gift a day, and that was special. Because of the stringent rules in place at that time, I only got to see my parents every other Sunday for a few hours. Most of the time outsiders (even my own parents) had to wear masks: it was awful! It contributed to my feelings of separation and abandonment. I was not told what I needed to do to go home. I would have done anything. I hated the hospital routine, but I put up with it (“bravely,” they said). I was a good little “trooper.” I just wanted to go home, but they had other plans.
I was given physical therapy in the warm pool in the basement. I loved the warm water, but my memory is that this only happened about once a week or so. I was fitted for a right long leg brace which included a belt around my abdomen because of the weakness in my right hip and abdominal muscles. The brace included brown high-top orthopedic shoes to provide support to my ankles. My left leg had recovered nicely. I learned to walk with my new brace and a pair of wooden crutches. Once I mastered climbing up steps with a heavy piece of steel strapped to my right leg, I was sent home to continue the rest of my life. And, boy was I ready!
I was welcomed home (unlike some towns which forced “polios” to move out–they were like the AIDS patients today–feared). I was blessed to have family and friends for support. The neighborhood kids were invited to a party in my backyard to welcome me home. I even got a paper crown, and was declared “Queen of the Neighborhood”. It was wonderful to be home, at last! People may have been afraid for their own children, but I never felt any of that. My childhood continued, and I even turned into a “tomboy”. I bent my solid steel metal brace by jumping out of a tree! My parents were told to let me do whatever I wanted and not to “baby” me. They had a hard time letting me get myself up after a fall, but I was encouraged to learn how to take care of myself. And, I am grateful to whoever gave my parents that advise. I had many more trips to the hospital for operations, and trips to the brace man for new braces as I outgrew the old one, or for repair. But, in between, I was living a wonderful, nearly “normal” life again.
While I was in the State Hospital, some photographs were taken of me in the Physical Therapy Room. I barely remember why they were taken. But, it seems the photos were submitted to the National Foundation for Infantile Paralysis (which became the March of Dimes) started by president Franklin D. Roosevelt. I became the Lancaster County Poster Child for 1955, and the posters were put up in businesses all over the county. My grandfather had one in his office for many years. It was even brown from his cigar smoke, but I still have it today (one of the only ones remaining, I’m sure). My mother was active with the “March of Dimes” and helped to raise a lot of money to help other polio survivors. I was lucky that my dad had good insurance from where he worked, but the National Foundation paid for some things not covered by the insurance, like continuing Physical Therapy. I was happy to be a part of such a wonderful organization. The Lancaster County office was run by Christian Rudy. He was a wonderful, compassionate man who ran a very good organization that helped countless polio patients get the medical help, therapy, and braces and other things that they needed. They even had a yearly Christmas Party for us. It was somehow fitting that they would give us back the “Christmas” that some of us didn’t have in the hospital wards.
I participated in sports in school (very badly!). I even took baton twirling lessons (even though I couldn’t march!). I was in the school play one year, and student director the other. I learned to drive my sophomore year, and loved this new found freedom. I did not have my own car, but was allowed to use the family’s second car, an old greenish blue Ford Falcon. It was great! The very first McDonald’s opened up in Lancaster only seven miles away, and my friends and I became constant visitors. It was a great place to meet guys. Like all teenagers in the 60s, I loved “rock and roll”, American Bandstand, Elvis, the Beatles and the community dances! I loved to dance: “rock and roll”, jitterbug, and even polkas and square dances. It was a good life. Being a teen was wonderful, and I found I could do most everything I wanted to do. Having had polio was no problem for me. I went to a small state college in upstate PA (now Mansfield University), and graduated in 1969 with a BS in Home Economics Education. I even had a teaching job lined up at Pottstown Junior High School before I graduated, and my future was looking good. Polio was something I had recovered from and it could no longer hurt me, or so I thought.
But by 1983, changes were happening to me. By this time, I have been married 13 wonderful years, and have 3 great little boys, and we are living in lower Delaware. It was during a trip to Epcot Center in Florida that I learned that I was no longer able to do all the things I used to do. After a morning walking around seeing the exhibits, I found I couldn’t walk any further as my hip hurt so badly. We made it out of the park somehow (never thinking to ask for a wheelchair), and I thought I’d never be able to return to a park again. I stayed away from all flea markets and malls in fact anywhere that involved more than a little walking. In retrospect, what I was experiencing is called Post Polio Syndrome (PPS), but it was a few more years before I even know PPS existed…and even more before I was diagnosed with PPS…and then even more until I learned to accept it!
My diagnosis: As a polio survivor from 1953, I finally went to the local post-polio clinic here in Baltimore, MD [now closed, unfortunately]. My PPS was diagnosed at that first clinic visit in 1989, but I still did not know to cut back on my activities. In fact, with the boys all in school, I took a part time job with the federally funded Supplemental Nutrition Program for Women, Infants, and Children (WIC) where I worked as a Nutritionist and Lactation Consultant (LC) until 1996. The pressure was too much for me with quotas for client participation, lack of staff, and super full schedules. I enjoyed the counseling part and felt I contributed a great deal to the program. And with over 20 years experience with Breastfeeding and my Board Certification as an LC, we had a great program for moms and their families. I was sad to leave, and I became depressed for the very first time in my life. My family, friends, and the computer helped pull me out of my depression without medications. It has taken a year, but I feel I am getting a handle on how to get on with my life and enjoy my “retirement”! I am even using a wheelchair more especially for distances, and know I will someday I will most likely be using one all the time. But, I just see it as just one more change in my life: another adjustment to be made.
At this point in my life, I am convinced that I need to plan for the future to make the most of my remaining mobility. I am using mobility aids, like a wheelchair or electric scooter, because of my inability to walk. My husband, John, and I are not putting off anything until later that we can manage to do today. We have taken some wonderful vacations, weekend trips, and cruises. We have been to 11 countries in Europe visiting with some of our friends and family. We are planning to travel in our travel trailer, so I can rest when needed, and see more of the USA and Canada. After my husband retires, we hope to stay active in any way we can that will not tax the resources that my body has left. I do not have any regrets in my life. I have been surrounded with wonderful friends, too many to list, and I love them all. I am blessed to have wonderful parents and a big brother. And, most of all my partner for life: my husband, who has always been there for me; and our three boys. I feel very blessed, indeed!
I enjoyed meeting some other people who were at the PA State Hospital for Crippled Children in Elizabethtown at the third reunion picnic at Long’s Park in Lancaster this summer. They have a picnic every two years, so the next one will be in 2004. If you have been a patient there, please contact me and I will see that you get invited to the next one.
© 2004 Jann