“In Search of Normal”
By Deborah Berg Stambaugh
In the summer of 1954, I was a healthy five 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 I was sent by family car to 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. It was so very emotionally distressing on my parents. There was no touching allowed between Mom, Dad and myself, and that was very hard for all of us.
What I remember about the treatments were the Sister Kenny Treatment (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 (even today if I smell wet wool it takes me back to that time). Eventually 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). I had a younger brother who stayed with family while they were gone, but he doesn’t remember.
Sometimes Mom and Dad’s friends would come on Sunday afternoon to visit. 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 got 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 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 with bars. For my safety a net was put 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 there. My mother remembered that I only had one casting. Then an outer brace was added, a brace that kept my arm at shoulder level. I was sent home with the brace.
I came home to Petersburg on February 14th, my Mother was expecting my sister and could not travel to Morgantown any longer. These were difficult times for my parents. My Dad had been in and out of work, they were traveling to and from Morgantown and had a daughter who had been hospitalized 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.
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 everyday 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 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 my “polio” arm. 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 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 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 soon moved in and worked on it while living 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 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 off maternity time. When I returned to work, our trusted neighbor took care of him while I worked during the day. Our job description 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, it was discovered that my rotator cuff was torn and surgery was needed. 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 a process of two weeks before I would be able to start to use my left arm, leaving me completely without the use of either arm or hands. The 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. All the strength never came back in my left arm, but polio survivors are strong people and we learn to adapt.
Life soon returned to its 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 really did have fun and met a lot of wonderful people. We truly loved it. Standing in the kitchen cooking all the foods from scratch, washing and ironing all the linens, 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 now 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. 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 with computers were soon connected. There are several that are 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 the Network Team as the Central PA. Coordinator. I am one of the four polio survivors on the team. Through our work serving other survivors and their families, I have shared many opportunities with Carol, the latest of which required safety seat belts on our new power chairs, as we raced around our State Capital meeting with legislators! I am an active Rotarian with the Hanover Rotary Club and engage regularly with the York/Adams County Immunization Coalition. I have discovered the joy of speaking to Rotary Clubs, assisting students, exhibiting post-polio information at Senior Health Fairs and PA State Immunization Conferences. We have joined with PA Rotary Clubs to launch a Vaccine Information Card, experienced a press conference with State Senator Judy Schwank announcing new vaccine legislation and we had the privilege of representing polio survivors at a press conference with PA State Secretary of Health (Dr. Rachael Levine, MD) regarding the importance of childhood vaccination. In spite of PPS, I am able to continue serving my purpose here on earth.
As my parents aged my Mom fought cancer three times and later developed dementia. Over the 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 would always be there for them. My Mom passed in November, 2018. My Dad is in his 90’s and with our help, is still in the home he shared with my mother. I will always be there for him because he is my Dad and was always there for me.
I have new challenges to come to terms with, but have learned that it's how we meet our challenges that makes us who we are today. There continues to be ups and downs for me, but as polio survivors we survive.
After years of specially made orthotics in my shoes for my right leg (my “polio side”) and a hair line fracture to the side of that foot, I now have a brace on that leg and have started using a cane. I have added a new power chair to the collection, for longer distances. So many assistive devices coming my way at once has been very hard for me to get used to. People really never noticed my arm before but now with all my new equipment they know I have challenges. 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.
