This story is part of The Salt Lake Tribune’s ongoing commitment to identify solutions to Utah’s biggest challenges through the work of the Innovation Lab.
There are two versions of my dad. The one I met and the one I know only through stories.
A lover of the outdoors who spoke frequently of his adventure-filled childhood roaming the fields and mountains around his home in Payson, I knew him as a man whose daily life was a struggle just to stay awake — a morning dedicated to coffee consumption, followed by an hours-long nap, and then cigarettes, more coffee, and television until night beckoned. Once in bed, he snored like a jet engine.
He loved to talk history, politics, religion and philosophy. The only topic he couldn’t stand talking about was himself.
I never once, for example, heard him speak about his childhood battle with polio, other than to dismiss its role in his life.
After his death in 2010, I dug through his old papers and photographs, including a notebook written entirely in code titled, “Journal of the Strange.” It remains undeciphered to this day.
Along with my brother, Eric S. Peterson, I interviewed my uncle and my dad’s cousins and friends. These added layers of color, depth, beauty and tragedy to our understanding of Dad, but raised as many questions as answers.
The Rosetta stone of Bob Peterson, for me, came early one morning in 2017, when I began a quest to understand polio. I read about post-polio syndrome and uncovered the long shadow the disease had cast not only over my dad’s life, but also down the generations to the grandchildren he never met.
My dad’s life, and those of other survivors who contracted polio as children, offers cautionary lessons about the current pandemic.
“People talk about mild cases in kids as if we know what the future holds,” said Wayne Spencer, my dad’s cousin and childhood best friend, “They talk about long-haul COVID after 18 months with this disease. We lived through polio, and some are still living through a lifelong ‘long-haul’ with it, but who’s listening to them?”
Not gone, but forgotten
Polio or poliomyelitis is caused by the poliovirus — an infectious disease that for the majority of those infected causes no symptoms. But roughly 30% of cases produce symptoms resulting from nervous system infection, including muscle weakness, breathing problems, paralysis and, sometimes, death.
Polio is documented as far back as ancient Egypt, but in the modern era, outbreaks peaked in the 1940s and ‘50s. The last case of naturally occurring polio in the U.S. dates to 1979.
It’s easy, then, to think of polio as belonging only to the past, but some 300,000 polio survivors remain in the U.S.
Salt Lake City resident Kristin Duffy, who contracted polio at age 2, said she is bothered by how the disease has disappeared from collective memory. “Anytime I’ve had to explain polio at work, people have no concept of what polio was or is. It’s so frustrating.”
From childhood cold to lifelong illness
For many pediatric patients, the immediate effects of polio were minimal.
Laura Card was 3 when she contracted polio in 1952, but the memories remain vivid. At the time, she was living in Minnesota where her father was pursuing his doctorate.
“It hit my mom, my dad, me and my sister,” said Card. “I remember a neighbor coming over to take care of me and my baby sister and my parents going away in the ambulance. I remember my uncle coming to get us and we had to go on an airplane to Salt Lake and looking down at black and white cows and calling them bunnies.”
All Card’s relatives were in Utah, but they were afraid to have Card and her infant sister around their kids. “I had an aunt and uncle who didn’t have any children, and they took us in for a few weeks.”
While her parents were gravely sick back in Minnesota, for Card and her sister, the virus passed like a bad cold. Growing up, she remained physically active, taking up swimming, and eventually became a BYU Cougarette. She even earned her Ph.D. at age 55.
“I got married, had six kids,” Card said, “but I always wondered why I wasn’t strong enough to do certain things.”
Card began to experience symptoms that eventually would be identified as post-polio syndrome, a degenerative condition that afflicts roughly a third of polio survivors, often manifesting decades after the initial infection.
Card’s diagnosis came as weakness and other symptoms led to diagnostic imaging. Her heart was enlarged, “It looked like a big boot was sticking out the side,” said Card.
Her spine had deformed like switchbacks on a hiking trail.
Card’s experience echoes that of my dad, who contracted polio in 1951.
“One day, we were out here wrestling around,” said Wayne Spencer, my dad’s cousin, pointing to the front lawn of my grandparents’ home in Payson, “The next day they told me he’d been taken to the hospital. He got sick that fast.”
In the sixth grade, Dad had to write an autobiography as a class assignment.
“When I was 4, an epidemic of polio came to Payson, and I was one of the people that got it,” he wrote. He had two of the three forms of the disease — both bulbar and spinal polio. “Although I had two kinds at once, I was very lucky not to have any serious aftereffects.”
Wayne Spencer said he “missed playing with Bob all those weeks he was in the hospital,” but when Dad returned, he seemed to have few lasting side effects other than a change in his gait and posture.
That strange gait is how I always knew him, like a marionette walking with a couple of strings cut.
Spencer said that after Dad’s return, the two recommenced their perpetual high jinks, including trips where my grandfather would drive the two of them to the top of Payson Canyon in winter and then let them ride their sleds all the way down the mountain.
Years later, though, he began to experience nearly all of the symptoms associated with post-polio syndrome: muscle weakness, acute sensitivity to cold, breathing problems and extreme fatigue. These were all just accepted as part of the bundle of eccentricities that made Bob Peterson who he was. They went undiagnosed, even as they impaired his ability to work, parent or live a normal life. He lived through them as a daily battle, without ever acknowledging their existence.
Not all pediatric polio survivors made it through childhood without obvious impairment. “I had two years of full health,” said Kristin Duffy, who experienced severe symptoms when she contracted polio at age 2. The virus affected her right side and put her in a brace for many years. Polio left her without a right deltoid muscle.
Decades later, with post-polio syndrome, her left side started weakening, too. “When muscles atrophy, it’s very painful, so muscles in my leg have atrophied, and it’s random. All of the sudden I’ll just get sharp pains and then find an indent on my leg.”
Duffy, who still works, said her greatest struggle now is with finding good medical assistance. “I’ve asked and asked and asked and there just aren’t polio doctors left.”
Polio’s lessons for COVID-19
Observing the policy choices being made right now around the pandemic, Duffy worries that we’re failing to learn from the lessons of history.
“If someone had told me when I was 10, ‘20 or 30 years from now you’re going to have a lot more trouble,’ I wouldn’t have believed it, but because of what I know of this illness, and how much about this current pandemic we don’t know, and how damaging it is to lungs and heart, I am very concerned about what this could mean for our children.”
Duffy’s son is a biochemist at the University of Utah who has quarantined his kids at home the whole course of the pandemic. “He has kept them home because he understands, thanks to his training and what he’s seen with me, the potential of what this disease could mean for his kids.”
Emily R. King of American Fork, a long-haul COVID-19 survivor, shares the concerns of Duffy and her son, particularly given the similarities — even instances of paralysis — between long-haul COVID-19 and post-polio syndrome. “I at least have a memory of who I was before I got sick. Kids who get sick now may be dealing with health limitations for the rest of their lives.”
“Long-term consequences of COVID-19 will likely not appear for years,” said Hallie Robbins, D.O., a specialist in physical medicine and rehabilitation who has worked extensively with post-polio syndrome patients for decades. Dr. Robbins was also among the first 100,000 Americans to contract COVID-19.
Dr. Robbins notes there are many common markers between long haul COVID-19 and post-polio syndrome, but that does not mean that long-haul COVID-19 is the last toll the current pandemic can exact. As with children who experienced mild symptoms with polio but later developed post-polio syndrome, says Dr. Robbins, “There will be a post-COVID syndrome, we just don’t know when or how it will manifest.”
The dad I never knew
My dad was a world-class eccentric in ways that go beyond what polio did to him. That was how I knew, admired and loved him. I don’t regret anything about our relationship, but I do mourn the version of my dad I never knew in life.
A six-week illness 70 years ago shaped and limited the experiences I had with my dad and the way I interact with my own children. Now, each morning as I send my kids off to schools where few of their fellow students wear masks, I must weigh whether I’m doing the right thing by them and the generation to follow.
Solutions in practice
A post-polio support group exists in Utah. Contact Debra Hunt, firstname.lastname@example.org, for more information.
Dr. Hallie Robbins specializes in helping post-polio syndrome and long-haul COVID-19 patients. She can be reached at 801-631-6288.
Post-polio syndrome resources and support can be found at Post-Polio Health International.