“In Search of Normal”
By Deborah Berg Stambaugh
In the summer of 1953, I was a healthy four year old, living in Petersburg, W. Va. One August day I was outside in front of our home playing hopscotch with some of the other girls in the neighborhood, when I realized I did not feel well. I went in to tell my mother. She said that I should go lay down on the sofa, which I did. Later the doctor was called and after three visits, my father told him that there was more wrong with his Debbie than a virus. We lived in a small town that only had a clinic; there was no hospital, so on August 16th, I was sent by family car to Monongalia General Hospital in Morgantown, W. Va.
Upon arriving, I was given a spinal tap, where it was discovered that I had polio. By that time my right arm was paralyzed and I was put into quarantine. My parents could only see me through a window. That was truly painful for all of us.
What I remember about the care at the hospital were the Sister Kenny Treatments (being wrapped in hot wet wool), the whirlpool treatments and stretching exercises. Mom told me she felt so sorry for me because the wool and the whirlpool were so hot. Lots of children cried. Even today if I smell wet wool it takes me back to those painful memories. Two weeks later, I was sent to Easton Convalescent Home for Children in Morgantown.
My parents could only come to see me on the weekends (hospital rules). They never missed one. They would travel 100 miles each way and stay in a boarding house on Saturday nights (which I know they could not afford).
While I was in quarantine, there was no touching allowed between us. That was hard, not just for me, but for my Mom and Dad as well. They would stand in the parking lot, and look up and wave to me as I stood in the window above. I always waved back, with the only arm I had. I had a younger brother who stayed with family while they were gone, but he doesn’t remember.
Once I was out of quarantine, sometimes Mom and Dad’s friends would come on Sunday afternoon to visit as well. They would bring gifts. I remember some of them fondly. One was a Betsy McCall doll. She came complete with homemade clothing (I still have her and her clothes). I received a record player with records, which I had fun getting into trouble with. Using my feet, I would push my bed, over to the stand where my record player was and turn on the music in the middle of the night. The nurses were not happy because I had woken up the whole floor, so they tied my bed to the wall. Another thing I would do was jump up and down in my crib style bed. For my safety, the nurses put a net over my bed at night. With my bed tied to the wall, a net over the top and those bars on the sides, my night fun ended.
At some point in this journey I was casted totally around my upper body, with my right arm at shoulder height on a bar that came out in front of me. I remember a round hole in the cast. I also remembered how it itched under the cast. My mother remembered that I only had one casting. Then an outer brace was added, a brace that kept my arm at shoulder level. On February 14th, I was sent home with that brace.
These were difficult times for my parents, and having me home was a relief. My mother was expecting my sister and could not travel to Morgantown any longer. My Dad had been in and out of work, while he had a daughter who had been hospitalized 100 miles from home for months. How would they pay the bill? A dear friend of theirs wrote a letter to March of Dimes and the entire bill was paid. (The March of Dimes was founded by polio survivor, President Franklin D. Roosevelt and his close friend and financial adviser, Basil O’Connor.
Once home, my parents were told to treat me just as they would any child in the family and not to baby me. And that they did! So I settled in at home. I remember after supper every day removing my brace and climbing on the table and doing exercises. There were monthly visits back to Morgantown for checkups, as they were watching my back for scoliosis. During one visit my parents were told that the exercises concentrated on my arm were no longer necessary. Back then it was believed that polio left you with muscles that either could be rebuilt or they couldn’t. My right arm muscles were completely and permanently paralyzed. My Mom told me that she would go into the pantry, shut the door, bang on the wall and cry "Why, Why, WHY Polio“.
At one point I fell down the stairs and broke my paralyzed right arm. After another emergency trip to the local clinic, I was sent back to Morgantown Hospital, where they had the professional experience to set it. Once again I was put in a body cast (this time, for six weeks). They set it so that my arm hugged my side and went across my stomach. I remember being confined to my home. Classmates brought homework every evening and at one point the whole class came with a Sunshine Box. It was full of games and candy. Everything was just for me. I opened one little gift each day. Soon the gifts were all opened, the cast was off and I was back to school.
When I was in 4th grade my father was offered a job at The Hanover Shoe Company in Hanover, Pa. Dad and two of his former coworkers went to Hanover. They would travel to Hanover during the week and came home, back to West Virginia, for the weekends. Eventually all three families moved to Pa, and I had to start a new school.
All through my grade school years I didn’t think of myself as different or handicapped. As far as I knew my peers thought of me the same way. When I got older and moved on in school I started to feel I was different and knew people looked at me differently. I got quiet and stayed in my small group of friends and did not get involved in high school activities. I felt different and was self-conscious because of the stares and the whispers. My Drivers Ed teacher did not think that I should be able to drive a car with only one hand. I passed my test and have been driving since. Our paths crossed a few years ago and we talked about it. He could not believe he treated me that way.
I was more active in church activities, but I still was trying to always hide my right arm. Bruce Stambaugh was a member of our church, and that is where we met as young teenagers and fell in love. He always saw me just for me and not my polio damaged limb.
After graduation from Hanover High School I went to Thompson Business School, where I felt more accepted. As part of my studies, I learned to type with one hand. In 1969 after Bruce and I were married, we spent two years in the Brethren Volunteer Service, first in Roanoke, Va. and then in Greenville, Ohio. I always got along with the elderly and often felt as though physically, we had many of the same capabilities.
After our time in the Brethren Volunteer Service, we came home to Hanover Pa. We soon found jobs and an apartment. Eventually we had two children and wanted to move out of town. We found land and started building a house. We had our home framed up by a contractor and then they went on to another job. Bruce, both of our parents and I finished it off. By now we were expecting our third child. We moved in and worked on it while we lived there.
After a few years I went to work at The Brethren Home at night as an aide. I was helping with nightly checks with patients. The supervisor did not agree with my working there. She felt that I could not hold my own, that the other girls had to do more to make up for me. She would sneak behind the curtains and watch! She soon came to me and told me that she had been wrong and that I did very well. What I didn’t know was how much stress this job was putting on my ”good” arm. Our three children were in school and soon I had the opportunity to move to the Activities Department. I loved this job - working with the residents and playing games while I visited with those that couldn’t get out of their rooms. There was something different to do and see each day.
When our fourth child came along, I took maternity time off. When I returned to work, our trusted neighbor took care of him while I worked during the day. Our job description had changed, and we had to spend one day a week changing bedding and flipping mattresses. I began to live with pain. After therapy and time off at work, my doctor discovered that my rotator cuff was torn and I needed surgery that would leave me without the use of either arm or hands while I recovered. I had the most wonderful doctor. He called my young family in to his office and explained to the kids what was going to happen to their Mom and that they would need to become my hands for a while. I was told that it would be two weeks before I would be able to start using my left arm. Those two weeks became six. Members of our church brought us meals, Bruce dressed me, brushed my teeth, fed me and did the personal things we do for ourselves. My Mom or a friend would be with me when Bruce worked and couldn’t be home. It was a rough summer but we all got through it. I never got the full strength back in my left arm, but polio survivors are strong people, and we learn to adapt. Life soon returned to our new normal. I tried to return to my fun job at The Brethren Home, but I had too many restrictions and had to take a permanent leave.
I missed being around people too much. I would have tea parties for my girlfriends on their birthdays and they started to encourage me to get into the business. So Bruce and I became entrepreneurs in the “tea room” business. We opened the Seven Oaks Tea Room in our home, in 1999. We truly loved it. We really did have fun and met a lot of wonderful people. But standing in the kitchen cooking all the food from scratch, washing and ironing all the linens, and washing all the china became too taxing on me. Even as the effects of polio reared its ugly head, we worked together and had fun. We had our Tea Room for almost 20 years.
I was experiencing what is known as “post-polio syndrome“. A new journey in my life was about to begin. I had a friend at church who was also a survivor. She introduced me to Post-Polio Health International. I wanted to get some support from other survivors, and joined. PHI provided lists of support groups, I started inquiring and found out there were none in my area so I decided to start one. The closest one was in a suburb of Philadelphia and Bruce agreed to drive me over. After meeting them I came home and began my new journey in the polio world.
In 2010, the Hanover Post-Polio Support Group was born. In the late summer of 2014, I received a call from Carol Ferguson introducing me to the soon to be launched PA Polio Survivors Network. Shortly thereafter, I introduced it to our support group. The survivors and their caregivers that had computers were soon connected. Those that were not, began getting the PPSN newsletter through “snail” mail.
After a few phone calls (always a joke between us) and a wonderful meeting, Carol asked me to join their volunteer team as the Central PA Coordinator - a job I still have. I love being one of the five active polio survivors on this working team.
Through our work serving other survivors, their families and advocating for pediatric vaccination, Carol and I have shared many opportunities – one of the most memorable required safety seat belts on our power chairs, as we raced around our State Capital meeting with legislators! As we became actively engaged with the PA Immunization Coalition, my advocacy began with the Lancaster County and (what is now) the S. Central PA Immunization Coalition(s).
In spite of PPS, I am able to continue serving my purpose here on earth. I have discovered the joy of speaking to Rotary Clubs, assisting students, working with disabled adults and seniors to put together vaccine information and exhibiting post-polio information at Senior Health Fairs. Since 2017 we have exhibited at our annual PA State Immunization Conference. We joined with PA Rotary Clubs and the Vaccine Education Center at CHOP to launch a Vaccine Information Card. We have now distributed more than 50,000 of those cards in more than 10 languages. We were part of a press conference with a PA State Senator, announcing new vaccine legislation and we had the privilege of representing polio survivors at a press conference with the PA Secretary of Health regarding the importance of childhood vaccination. In 2024 we felt fortunate to be invited to the National Immunization Coalition Conference where we were asked to present our work in the Amish Community.
As my parents aged my Mom fought cancer three times and later developed dementia. Over those last few years there were many trials, and my brother, sister and I helped my Dad take care of Mom at home. They always said they were a burden but I remembered how they were always there for me and I knew that I would always be there for them. Now they are both gone. I’m glad we had those years together. They were my parents and through it all, they were always there for me.
For many years, I wore specially made orthotics in my shoes, but after a hair line fracture in my “polio” foot, I now have a brace on that leg and have started using a cane (not an easy task with only one arm). So many assistive devices coming my way at once has been very hard for me to get used to. I laugh when I think about how much fight I still have in me. It showed up when I learned I had to add a new power chair to the collection!
People really never noticed my arm before but now with all my new equipment they know I have challenges. I was blessed with a positive attitude and that is serving me well. I understand that with the reality of post-polio syndrome, things will always be changing. I have learned that it's how we meet our challenges that makes us who we are today.
I guess I still want to be seen as “normal”. On the other hand, I think that as survivors of anything we just want to be looked at and accepted as “normal”. There have been many challenges and changes for me, both good and bad. All in all I am content in my life, looking forward to the future and of being able to continue to serve. I guess you can say I have found my normal, although it changes every day.
Deborah Stambaugh
Orignally published in 2020, this story was updated in 2024.
All photos courtesy of Deborah Stambaugh and PPSN
