The price of polio
Meet five Rotarians who understand the disease’s long-term consequences
When you go to your Rotary club meeting this week, look around at your fellow members and think about this: In North America, anyone younger than 70 likely doesn’t remember a time before the polio vaccine. Those under 40 were born after polio was no longer endemic in the United States. And among your club’s youngest members, the very word “polio” probably conjures a bygone age when children regularly died of diseases like measles, smallpox, or whooping cough. Now, however, we know that measles is staging a comeback. Tuberculosis, which might bring to mind 19th-century sanitariums, is gaining greater resistance to treatment. Until a disease is really gone, eradicated, extirpated from the planet, it will always be looking for ways to come back, for breaches in our defenses.
We’ve come very far in the 64 years since the introduction of Jonas Salk’s vaccine — and especially in the 40 years since Rotary decided to take on polio. Every day it gets easier to forget why it’s so critical that we eradicate this disease. Most of us don’t see polio in our daily lives. Whole generations have never experienced its terrifying power.
We let our guard down when we think that polio is a disease that happens only in faraway places, or that almost eradicated is good enough. But if we stop and remember what it was like when polio was everywhere and people felt powerless against it, we know that if we don’t finish the fight, we’ll soon be back where we started.
In the following segments, five Rotarians share their experiences with polio. Thanks to their willingness to recount painful memories, we know that we must keep fighting until polio is gone forever.
Rotary Club of New Tampa, Florida
I felt like I was entering another world. Beds with paralyzed children lined every wall. I was put into a big room. There were rows and rows of children, probably about 50 children, and three or four nurses to care for us. I was seven when I was transferred to Hope Haven children’s hospital in Jacksonville, Florida, where I spent four months learning how to walk again.
I missed my mother so much. When she would visit, I’d ask her why she couldn’t come more often. But parents were only allowed to visit on Wednesdays and Sundays. I still don’t know why. I’d cry myself to sleep every night. The nurses used to get so mad at me. They’d say I was too old to cry.
I spent Thanksgiving, Christmas, and my birthday in that hospital. At first, I was bedridden. Polio had affected my legs, and I couldn’t walk. When I got the virus, I had extreme pain all over my body and a high fever. I couldn’t stand up. That was very scary.
My parents took me to the doctor on a Saturday morning; he examined me and immediately sent me to an isolation ward. I had my own room there, but only the nurses could be with me. There was a balcony that extended around the building, and each room had a window. There were two chairs on the balcony outside every room, and that’s where parents would sit and talk to their child, through the window. No one was allowed into my room, and I was not allowed out.
Once my fever broke and I wasn’t contagious anymore, I was moved to Hope Haven to learn to walk again. The therapies were painful. They would put hot, wet wool towels on my legs and then exercise the muscles. The nurses would also massage my legs with oil. Sometimes they’d use these electrical shock-type things to shock the muscles into use. They would take all of us to therapy once or twice per day. In between, teachers came in and we had school. They’d roll my bed to a huge room, and the teachers would be in there teaching. It was the beginning of second grade for me.
Once I started walking, I was released from the hospital, but I didn’t return to my old school until third grade. After I left the hospital, I tried to put it out of my mind. Then the vaccine was released, and everyone went to get it. It was being given at a school on a Sunday afternoon. They called it Sabin Sunday, after Albert Sabin, who invented the oral vaccine, and I remember standing in a really long line, thinking, “Do I really need to do this? I’ve already had polio.” But my mother was adamant that my brother and I get vaccinated.
Since then, I’ve done most everything I wanted to do in life. I became a teacher. I married a wonderful guy 53 years ago who is also in Rotary. I have three children and 10 grandchildren. Not many people know I had polio, except that one of my legs is smaller than the other and I have a slight limp. About 12 years ago, I fell and broke the hip in my bad leg. After surgery, I was able to learn to walk again, so now I can say I’ve learned to walk three times.
This year, I’m president of my Rotary club. I’m eager to make eradicating polio a priority and to raise money for End Polio Now. Until now, I haven’t told many people my story, but if it can help the eradication effort, it seems like a good time to start.
Rotary Club of Lee’s Summit, Missouri
There were five children in my family, all boys. In 1942, every one of us got polio. My oldest brother, George, died. My middle brother spent months in an iron lung. I was so young that I don’t remember having the virus, but I grew up with its effects on our family all around me. George’s photograph sat on our fireplace mantel. He had been afraid of the dark, so my parents plugged in a nightlight next to it.
But as time went on, few people even knew I had had the disease. In 1999, I was appointed PolioPlus chair for my district. That’s when I asked my mother to tell me about our family’s experience with polio. At first, she said she couldn’t talk about it. It was too painful. But a few weeks later, she surprised me with a letter. I’m sharing it now in the hope that our story will help my fellow Rotarians understand why we must continue to fight this disease until it’s eradicated.
It must have been August 7, 1942, when Bill came in and announced he had “poliomyalitus.” I didn’t know where he had heard of such a thing, but I said, “If you have poliomyelitis, you go straight up to bed and stay there” … and he did! He really did feel bad! Then George became ill. I called Dr. Eldridge, our pediatrician. On the night of August 11, George couldn’t swallow his medication. It came back through his nose. I called the doctor again and he came right over. (Dad was on the road.) Dr. Eldridge took George and me to old General Hospital. (No other hospital in Kansas City would accept us.) They took George, but they wouldn’t let me stay. I went home and called Dad. He started home immediately, drove all night, and went to the hospital about 4 a.m., but they wouldn’t let him in either. At about 7 a.m. the hospital called us and said George was dying. When we arrived, George was already gone.
By that time, Richard, Larry, and Carl had also become sick, and when I got home from the hospital, Richard was much worse and we rushed him to the hospital. When we marched in, I informed them I was staying … I had lost one child and I was staying, no matter what! Dad and I took turns so Richard always had one of us there. One of Dad’s aunts had come to help us and stayed with Bill, Larry, and Carl.
Dad sent someone to take me to the funeral home to see George. When I got back to the hospital, Richard wasn’t doing well, and in the night, I saw his skin sink into his chest. All I could see were bones covered with skin, drawn tight. I ran as fast as I could down the hall, calling the intern. We ran back and this man picked Richard up and plunked him into an iron lung. His lungs had collapsed.
When we went home, we had to start the “Kenny” treatments. We had to tear wool blankets into strips and put them in boiling water, run them through a tight wringer, and place them on each child for so many minutes, and then off for so many minutes, then on, etc. Dad put a hot plate in an upstairs bathroom to boil the water. He put an old wringer over the tub with stacks of wool strips handy. Bill was on his way to recovery, but Richard, Larry, and Carl were the sick ones now. Dad hired nurses to help during the day, and my dear mother drove from California to help. People came from everywhere to give us hope and offer to help, but they couldn’t come in the house.
When the boys were well enough, we had to start therapy, compliments of the March of Dimes. I took my children and another lady in leg braces and her little boy three times a week. Richard has one leg a little shorter than the other. Carl’s chest didn’t fill out. Bill had many problems. And, of course, we have one little boy angel in heaven.
Rotary Club of Bluefield, West Virginia
My mother was in her 30s when she contracted polio. I don’t remember her having the disease, but I do remember her coming home with a cast on her left foot after she’d had a corrective surgery. I was about four years old, and I remember her getting out the drill to make holes in the legs of a kitchen chair so she could screw casters into it. She sat in it and rolled herself around our kitchen while she cooked, rather than hobble on her crutch.
The surgeon had put a plate in her foot in an attempt to straighten it, but it didn’t work, and it left her in pain. Doctors wanted to amputate her foot, but she refused. These were the days before the Americans With Disabilities Act. Nothing was accessible. She would struggle on one crutch up and down the stairs to our apartment, down the street to the store, up the steps to get on public transportation. I only saw her ask for help if she really needed it. I really don’t know how she managed to raise nine of us children. Before she got polio, she was raising my older siblings during the Great Depression and while my father was away fighting in World War II.
We all grew up here in Bluefield, West Virginia. In the 1950s, people were afraid of polio and the atomic bomb. A nearby town, Wytheville, had more cases of polio per capita than any other place in the country. People would keep their windows closed and hold their breath just to drive through Wytheville. Everyone was terrified because they didn’t understand how the virus was being transmitted. City workers sprayed insecticide all over the trees and houses in case insects carried polio. All public places were closed — movie theaters, pools. Kids were quarantined at home. There’s still a museum in Wytheville that documents its polio epidemic.
I joined Rotary when I found out about their work to eradicate polio, because I thought it would be a way to make my mother proud. She died of lung cancer at age 56, though she never smoked. I wasn’t interested in networking; I joined Rotary to help immunize children against polio, and in 2011, I traveled to India to do that. We went to a little town between the Ganges River and Nepal where we immunized about 45 children who had been missed by previous vaccination campaigns. While there, I met a 16-year-old girl who had crawled her entire life because of polio. She was getting fitted for leg braces so she could take her first steps at age 16. I still get emotional thinking about her.
After that trip, I became an advocate for PolioPlus. I gave presentations across our district, raised money, and served as our district’s PolioPlus chair. I didn’t have any of those aspirations when I joined, but I can be very driven, like my mother: Even though polio left her physically damaged, it never took her spirit.
Rotary Club of Cambria, California
I had never heard anyone called a polio survivor until I became a Rotarian in 2005. For me, I had polio, and life went on.
I contracted the virus when I was eight months old. The disease left me with a limp. My left foot is a drop foot, which means I can’t lift the front part, so I pick up my whole foot when walking to avoid dragging my toes on the ground. It was always clear that I was never going to be a lead dancer for the Bolshoi Ballet, but I chose my goals and went after them. I had a successful career in marketing for movie studios. It was always go, go, go, and there was a lot of travel. I left the industry at age 60 because the travel and hours were taking a toll on me physically. But at that point, I still hadn’t consulted with a doctor who knew anything about polio.
My dad died in 2008 after being bedridden for years. He had contracted polio at the same time I did, but the impact on him was more severe. It affected his right leg and right arm. In his name, I traveled to India to take part in a National Immunization Day in 2010 and again in 2012. What really shocked me in India was seeing polio survivors on the street. There was a young man, I’m guessing he was in his early 20s, who I saw at St. Stephen’s Hospital in Delhi. He is burned in my memory because of the way he was forced to walk.
In the United States, you might occasionally see a polio survivor who limps. But it was completely different in India. Going on an NID showed me what a polio survivor living in poverty suffers. They can’t work. Many are carried from place to place. It’s devastating.
In 2013, I climbed Machu Picchu. That night, I remember taking a shower and trying to walk 50 feet to dinner. I could barely get there. I used my walking stick, but I had to keep stopping. It was so hard to move. A few months later, I consulted with a doctor who explained to me how polio initially kills off nerves. Some of the surviving nerves grow little sprouts, and when those die off, they don’t regenerate. He said I should always use a wheelchair going through airports. He told me, “Your life is now a choice about what is worth killing nerve sprouts for.” He advised me that I shouldn’t do anything that I would need more than 20 minutes to recover from.
The biggest thing that concerns me today is that people here in the United States are not vaccinating. I’ve lived in Los Angeles for 38 years, and so many people come through this city. I worry about how easy it would be for the virus to travel back to the United States and affect a child who isn’t vaccinated. Yes, I survived and lived a full life, but I would have done more physical activities if I hadn’t had polio. I want every opportunity to be open to every child.
Rotary Club of Middletown-Odessa, Delaware
When I was 10 months old, I was paralyzed from the neck down by polio. I had been in the hospital for about a week when my great-aunt came to visit. She was a nun and had spent most of her adult life working as a nurse in a polio ward. She looked at my chart and saw that the doctors weren’t doing what they needed to do to prevent my muscles from atrophying. My great-aunt believed in a method developed by an Australian nurse named Sister Kenny. It was a physical therapy program for polio patients that manipulated and stretched the paralyzed muscles.
But at the hospital, they were putting kids in casts. It was the worst thing to do, but they didn’t know. Not moving the paralyzed limb caused the muscles to shrink and weaken, and those children had to have many painful corrective surgeries.
After my great-aunt visited, my mom decided to bring me home and perform the Sister Kenny method herself. She said I would wail in pain every time she exercised my limbs, and she had to do it every other hour, all day and all night, for six months. She was pregnant at the time and also had my three-year-old brother to care for. Without her strong will and determination, I never would have walked. I’m blessed that she had the fortitude to do that.
A year later, I took my first step. As I grew up, most people never knew I had had polio. My mom did such a good job, very few of my muscles atrophied. I played baseball, basketball, and football. I worked in restaurants, which is very physically demanding. I started a business. At one time, if you went to a Burger King anywhere between Maine and South Carolina, your receipt was printed on paper from my paper and ribbon supply company.
But when I turned 40, I started to have weakness, pain, and extreme fatigue. It got so bad that I had to retire. I went to 10 different doctors over two years before a doctor identified it as post-polio syndrome. Hearing “polio” hit me like a ton of bricks. I thought it had come back. But the virus hadn’t come back; the muscles that had compensated for my damaged muscles were starting to fail from overuse.
Now I’m in a wheelchair for all but about 200 to 300 steps per day. I’m in the chair to protect my ability to walk. I have to avoid overusing my muscles. I can’t lift weights or do resistance exercises. About 70 percent of polio survivors have post-polio syndrome, yet it’s still widely misunderstood and often misdiagnosed.
About four years ago, I attached a sign to my wheelchair that says, “This is what polio looks like when a child is not vaccinated.” I did it because I want to bring attention to the need to eradicate polio — and to the importance of vaccinations. A lady came up to me at Yankee Stadium recently to ask if she could take a picture of my sign. I said, “Sure, but why?” She said her daughter-in-law refuses to vaccinate her children, and the woman wanted to show her this picture. Here in Delaware, the combined vaccination rate is 77 percent, which is well below herd immunity rates for many diseases. As I’ve gotten more and more involved with PolioPlus through Rotary, I’ve become concerned with the declining level of vaccination rates in the United States.
I’m in this chair because there wasn’t a vaccine for polio when I got the virus in 1953. But no matter how dedicated Rotary members are to eradicating polio, many of them know very little about the disease. So I’m trying to do my part to educate people about my experience.
There is a lot of suffering for polio survivors. That’s why we have to keep fighting this disease. So many positives are occurring in the eradication campaign right now. We are very close to a polio-free world. The money is not going down the drain. We have to keep fighting. We have to keep the promise that we made to the kids of the world back in 1985.
• This story originally appeared in the November 2019 issue of The Rotarian magazine.