She Loves the Joy that Sunshine Brings
Nancy Zuspan
By Deborah Prewitt
As we met in the middle of a world-wide pandemic to begin this story, Nancy told me that she has always been able to find sunshine in difficult situations. Even as a child with a disability, her friends could see her joy. I was reminded of this personality trait in her has I begin reviewing the notes I took to write her story. Her disposition is a gift that has taken her far.
One hot summer day near Columbus, Ohio, the young Zuspan family was invited to an outdoor party to celebrate the 4th of July. Polio was entering the communities around Columbus. There was a lot of fear and very few clear guidelines. The family wanted to attend the party and took the best precautions they could think of by leaving the baby at home with Grandma. Nancy was 4 months old.
The plan was a good one however, the poliovirus was a cunning opponent. Shortly thereafter, Nancy’s mother began showing signs of fatigue and difficulty breathing. She had contracted polio and was sent to the hospital, where she almost died from the virus attacking her lungs. The young mother of three, would be hospitalized for over two weeks while she was successfully treated for the poliovirus.
Meanwhile, her father was the stay at home caretaker of three small children ages 4, 1 ½ and their 4 month old baby, Nancy. While his wife, Marilyn, was in the hospital struggling with the effects of polio, he noticed Nancy’s right leg was flaccid. He took her to the doctor and on July 19, 1954, she too was diagnosed as having had the poliovirus. He believed the active virus had run it’s course and she had been left with the effects. She was not hospitalized. Her parents arranged for their infant daughter to receive physical therapy, on her right leg, at home. Her recovering mother was still in the hospital.
During that time, Nancy and her father developed a strong father daughter bond. Nancy wore braces as an infant. The braces on each leg were connected and remained that way until she began to walk. Through his sadness and anger that his wife and daughter both got sick so close to the ability to have the vaccine, her Dad became her cheerleader and coach. Throughout her young life he was the main figure in her treatment and development.
Nancy’s father Bill, had accepted a teaching position at Drexel University prior to his wife and daughter becoming ill. A few months later, the Zuspan family moved to Broomall, PA. Little Nancy had many friends in school and in her new neighborhood. The children there just accepted each other as they were, they almost never noticed that their happy little friend was in a brace . . . she was just one of the neighborhood kids. They even adjusted the rules to their neighborhood games to accommodate their friend’s limitations.
Nancy was a determined child, she walked at 18 months. Up until that time her brace was connected leg to leg and went up to both of her hips; the brace was disconnected once she walked. She would walk three steps and fall but remained a happy child. She remembered thinking, “Why doesn’t everyone do it this way - walk, fall, getup and walk some more?”
Bill Zuspan discovered the March of Dimes and was an advocate for their work in the support of polio treatment. In a local, Broomall newspaper interview, he stated: “Before July, I had accepted a teaching position in Philadelphia, and we arrived here in December at which time I contacted the Delaware Valley Polio Foundation. Although my wife was practically well, Nancy needed a concentrated physical therapy program”. “I consider that she has received and is receiving the finest possible care since our arrival here.” They have “paid for special shoes, braces and physical therapy treatments in the home. Without this help, her recovery would surely have been less rapid. I hope and pray, that for the sake of children like Nancy, the help supplied can continue through the March of Dimes.”
Living in Broomall put the family closer to her father’s job at Drexel University and also closer to an outstanding Philadelphia hospital and the renowned pediatric orthopedic surgeon, Dr. Chance. (Nancy told me that although he was known to be an outstanding surgeon, he had no bedside manner. At 11 years old, that was memorable). Nancy wore a brace on her leg until the 3rd grade. Then she had her first surgery – a knee surgery to slow down the growth of her “good leg”. When she was in the sixth grade, Nancy had surgery again. This time on her “polio leg”. The operation was to cut a piece out of the femur to help with a heel strike. The surgery was successful but Nancy spent 3 months flat on her back. She recalls her bed being up against the window so she could watch her neighbors and siblings and their comings and goings and enjoy fresh air.
Her father didn’t want her to miss out on anything. He would often say, “stop feeling sorry.” “get up” “you can do this”. He was the one who was mostly involved in her treatment. Nancy’s father instilled in her the “never give up” mentality which really served her well throughout her life; he was responsible for the attitude of acceptance of this life altering event.
Like so many parents of polio survivors, Nancy’s Dad was advised to not “let her wallow” so that message became his driving force in how he pushed her to stay engaged in all things. Nancy remembers herself as being a happy child. She was never treated differently and never felt different until she was in school. She clearly remembers one boy who teased her in a mean way calling out, “Hey, Gimpy”. She can still vividly remember the incident and the boy who said those words.
Dr. Chance did one last surgery when she was 19 years old. It was to remove the staples in her “good knee”.
Nancy married at 19. She had three daughters. She told me that her pregnancies were only hard at the end. Many years later, after becoming a physical therapist, she became aware that was due to weakness in her quadriceps muscles. Those she explained, were her thigh muscles.
Nancy told me that through it all, the scariest thing she ever did was to get a divorce. She had three girls aged 12, 9, and 6. The second scariest thing she ever did was walk into a college admissions office at 38 years old. Well, Nancy did what she had always done - she pushed on through. She graduated from Alvernia University, with a 4.0 GPA and became a Physical Therapy Assistant. I realized as she told me her story that she accomplished this as a single mom with three school aged children. Wow. Her father, a professor at Drexel and her life champion all along was proud and so was Nancy. She did “general” physical therapy for nine years and went on to become a hand therapist, and worked in a physical therapy office for 11 years. Filled with compassion for her struggling patients, she sought ways to help them laugh.
In her 50s Nancy found herself to be tired. Tired from always “pushing through.” Her physical weakness at that time fed into her emotional fatigue. A happy grandmother of eight, Nancy is now retired and lives with one of her daughters and her family. It is a relief. Nancy knows she is loved by her children. Her mother, also a polio survivor, is 91 years old living in California. Although she has some breathing and arm/hand weakness issues, it appears that relocating to a less humid climate has helped her.
Today, Nancy has great empathy for people with disabilities and children in particular. “I can relate to wanting to give up”, “getting mobility figured out”. Respiratory issues have required her to start on a CPAP machine, then to a BPAP, then on to a VPAP. She experiences brain fog and exhaustion. Nancy found it upsetting that no one was addressing the emotional brain (and fatigue) impact of the disease. When she discovered the Post-Polio Coffee House on Facebook, she told me that she finally found a place where she was accepted and loved. At the same time, she discovered The Polio Paradox, a book by Dr. Richard Bruno, HD, PhD. She sat down and read it in three days. She was startled by the information she learned. In particular, was her new awareness regarding the extent of the damage polio did to her body. “I never knew polio did as much damage as it did”, Nancy said.
At the time she got sick, there wasn’t anyone addressing the emotional impact of polio on the survivors. Today she would wish for someone to address emotional issues for a disabled child . . . some one coming from a more sympathetic and empathetic place than she experienced as a child. That being said, in spite of the challenges, Nancy Zuspan developed a winning personality. Her sunny disposition and positive attitude are her own.