'We Are Still Here' (article & video)

Video by Raishad Harnett and Article by Wendy Ruderman; both for the Philadelphia Inquirer

John Fallon was not yet 3 years old when he contracted polio. Courtesy of John Fallon

John Fallon was a toddler when polio weakened his lung muscles and he began to suffocate. Doctors placed him in a coffin-like iron lung inside a Philadelphia hospital for patients with contagious diseases.

Encased from the neck down, with only his head sticking out, Fallon spent 15 lonely months inside the negative-pressure metal canister that forced his lungs to expand and deflate. The mechanical whoosh-wheeze was as reassuring as his own heart beat. The only human touch came when nurses, wearing plastic gloves, hastily changed his diaper and clothes through side portals.

Today, the 81-year-old Fallon and others his age who spent their childhoods in leg braces, wheelchairs, and the dreaded iron lung are living proof of a disease they fear many have forgotten: polio. To those still living with the debilitating consequences, the resurgence of polio this year in New York - a confirmed case in an unvaccinated young man hospitalized with paralysis in June - feels like a personal affront.

An image of a school in Philadelphia for kids with polio is photographed inside the home of Charlotte Clarkson in Northeast Philadelphia. Heather Khalifa / Staff Photographer

Last month, New York’s governor declared a state disaster emergency after poliovirus was detected in wastewater samples in four counties, as well as in New York City. The state’s health commissioner has warned that “the single case of polio” is “just the tip of the iceberg of much greater potential spread.”

The menace of polio, a highly infectious disease that can cause paralysis and sometimes death, shaped a generation of Americans.

Communal fear of the invisible assailant closed pools and forced forced quarantines at the start of the last century. The COVID-19 shutdowns echoed that time period, though the differences between the two viruses include that it took years to develop a polio vaccine.

“We have whole generations who have no knowledge of it whatsoever,” said Carol Ferguson, who runs the PA Polio Survivors Network out of her Bucks County home.

“Now, guess what? It’s only a car ride away.”

Ferguson was 2 years old when she spiked a fever in the summer of 1954. Her parents dismissed it as the flu. She would later learn it was polio.

The virus had attacked her body’s neurons, or the cells that send motor commands to our muscles. Now, at 70, Ferguson walks with a cane and leg brace. She can’t climb steps because it’s too painful. She struggles with a “drop foot,” meaning the arch in her left foot is permanently frozen, clawlike, into an “S” shape.

The Inquirer spoke with six polio survivors living around Philadelphia. They are among the estimated 300,000 polio survivors nationwide and still suffering into their 70s and 80s. They wanted to call attention to the disease’s ongoing toll and the consequences of remaining unvaccinated in a society where polio now is avoidable.

Polio’s Dark Days

In the summer of 1950, Charlotte Clarkson’s mom was terrified that she and her three siblings would get the virus. She forbid them to swim in a public pool or play under an open fire hydrant.

Charlotte Clarkson, 80, inside her home in Northeast Philadelphia. Heather Khalifa / Staff Photographer

The virus spreads through infected fecal matter and respiratory droplets that get into water, food, or on people’s hands, which they then place in their mouth.

One day in early September, Clarkson arrived home from school. Her mom noticed she was limping. Clarkson, then a 9-year-old fourth grader, hadn’t even noticed. She had no fever or fatigue. A doctor poked pins in her legs. She felt the pinpricks so he didn’t think she had polio. He ordered bed rest. Two days later, she couldn’t move her legs.

Charlotte Clarkson was 9 years old when she contracted polio. The virus attacked her motor neurons and caused paralysis in her legs. Courtesy of Charlotte Clarkson

The polio virus attacks your brain stem, spinal cord, or both. It damages or kills nerve cells, or motor neurons, that carry commands from your central nervous system to your muscles. For days, Clarkson was confined to her bed. She passed the endless hours sewing clothes for her Kewpie doll. Each morning, her family carried her down the stairs to the sofa in the living room of their Kensington home. Her mom rubbed her paralyzed legs with hot Camphor oil. She placed Clarkson’s feet over her own feet, locked her elbows under her daughter’s armpits, and walked her up and down the hallway.

The polio virus affects each person differently. Although survivors have fewer motor neurons, the remaining ones sprout new fibers that help compensate for the lost ones. That’s why many polio survivors regained some or all motion after their initial paralysis. A physical therapist visited her house and worked on her legs as she lay on the dining room table. It took Clarkson, now 80, three months to walk again.

She surprised her father one night after dinner. He was reading the newspaper in his favorite lounge chair. He looked up, saw her standing there and said, with tears streaming down his face, “Well, it’s about time.”

From Hopeless to a Cure

Shirley Smith at her home in Glenside, Pa. Jose F. Moreno / Staff Photographer

By the time a Pennsylvania doctor offered the nation hope against polio, Shirley Smith had lost five years of her childhood. The daughter of a coal miner, she grew up on a farm in northeastern Pennsylvania, spending her days jumping in hay and climbing trees. Within the span of one day in early fall 1950, she had become too tired to feed the chickens, then hours later immobilized on the couch.

She burned with fever. The family doctor made an urgent call to her home. He diagnosed her with the flu, then called “the summer grippe,” which would later be recognized as polio.

When her legs “just stopped moving,” Smith’s parents took her to the Wilkes-Barre Contagious Hospital. A spinal tap revealed she had “paralytic polio,” one of three virus types. Of her four siblings, she was the only one thought to get polio. (Most people infected with the virus don’t have any symptoms.) While quarantined in the hospital, Smith could only see and talk to her family through a window near her hospital bed.

After about a month in the hospital, an ambulance transported Smith to the “Home of the Merciful Savior for Crippled Children,” a residential facility for polio patients in West Philadelphia, a four-hour drive from her family’s farm.

With physical therapy and a treatment of moist hot compresses on her damaged muscles, Shirley Smith eventually was able to get around with leg braces – and climb trees again. Courtesy of Shirley Smith

She was initially placed on a ward “with rows and rows of beds,” unable to move her legs. Nurses in starched, starched-white uniforms used moist hot compresses to ease her muscle pain.

“I thought to myself, `Well, I’m gonna beat this. I’m gonna be able to walk,’” recalled Smith, now 84. Eventually, she graduated to hip-high leg braces and wooden crutches.

She lived there from age 12 to 16. Her parents visited every Sunday.

Smith had been there for two years when, on a May day in 1952, Jonas Salk, a bespectacled and unassuming virologist, came home from his job at the University of Pittsburgh School of Medicine, where he ran a research lab. He began to boil needles and syringes on the kitchen stove of his Allegheny County home. Salk was finally ready to test a potential polio vaccine, which did not contain live virus, on his three young sons.

On April 12, 1955, the kids at Smith’s facility heard church bells and a joyous commotion on the city’s streets. Salk’s polio vaccine had passed final crucial tests and was declared safe and effective. The Inquirer’s front page the next day proclaimed an end to polio’s “long reign of terror.” Smith and the other children at the facility cheered, “We’re going to be the last of the kind,” she shouted.

Polio Eradicated, But Suffering Continued

Carol Ferguson at physical therapy. Jessica Griffin / Staff Photographer

The U.S. proclaimed itself polio-free in 1979. And yet, for Carol Ferguson and others in the support network that she runs out of her Bucks County home, the epidemic was an era that never really ended.

Ferguson spent decades trying to figure out what was wrong with her body. For years, all she knew was what her parents had told her: She had the “summer flu,” a runny nose and fever, as a toddler. In her adolescence, she developed a “drop foot,” walking with a toe-heel gait. Her parents took her to an orthopedist at Temple University Hospital. She removed her left sock. “That’s a polio foot,” the doctor said bluntly. Her parents just looked at one another. “It was never spoken of again in my home,” Ferguson said. “Parents of their generation were told that ‘if your child gets sick, it’s your fault. Your house isn’t clean. You didn’t take care of them properly,’ and they blamed themselves.”

Carol Ferguson during deep tissue work at physical therapy with Janet Drake Whalen. Jessica Griffin / Staff Photographer

In high school, she unsuccessfully tried out for the swim team; her left leg flopped in the water. After a gym class while in college, her upper-left body seized up. She inexplicably began to stumble and fall in her 30s. Everything hurt. All the time, she said. Finally, at age 50, she was officially diagnosed with “post-polio syndrome,” which develops long after the virus has left the body. It causes debilitating muscle weakness, fatigue, and pain in muscles and joints. An electromyography, or EMG, found damaged neurons. “That journey was hard,” Ferguson recalled.

On a recent sunny afternoon, Ferguson’s hazel eyes widened and began to water. Pain flared through her neck as a physical therapist gently “compressed” her left shoulder into the massage table and stretched her arm. She felt her back muscles tighten, then spasm. She cried out.

Ferguson wears a pedometer and limits herself to 2,200 steps a day to reduce her daily pain. She has turned down invitations to visit close friends who live in a home with five entrance steps. She refuses to be carried in. Ferguson’s father died never saying the word “polio,” but 10 years ago, Ferguson got the affirmation she had sought for so long. Her 90-year-old mother, eyeing her daughter’s leg brace, told her, “We always, deep down, knew it was polio.”

Surviving Polio and a Pandemic

May and husband Win Van, born and raised in Taiwan, both contracted polio as kids. Alejandro A. Alvarez / Staff Photographer

The isolation and shutdowns of March 2020 were eerily reminiscent, even traumatic, for May and Win Van, who live in Haverford and both contracted polio as children in Taiwan.

Suffering from post-polio syndrome, they had relied on routine, low-impact exercise to maintain their mobility. May Van also has asthma from the treatments used when she had polio as an infant. (Her mom had used coal to boil water to soothe May’s limbs, and the black smoke triggered asthma.)

For months after the pandemic’s start, the Vans rarely ventured out of their condo. May Van said she noticed that her “good muscles,” the ones less impacted by polio, weakened through 2020 and never bounced back, even when activity resumed. “Now I can’t even walk one-eighth of a mile, even with a walking aid,” she said, visibly frustrated.

Last year, May Van helped organize monthly Zoom meetings for the Pennsylvania Polio Support Network to keep members connected and feel less isolated. Once a month, they talked about everything from how to educate their primary care doctor about post-polio syndrome to COVID-19. When news hit about a paralytic polio case in Rockland County, just north of New York City, the group’s conversations shifted: Were they at increased risk?

Many polio survivors didn’t get vaccinated because they had thought they were immune. They’re now learning that’s untrue. If you had one type of polio, you can still get the other two types, medical experts say. But those who got doses of the Salk vaccine are protected against all three types. “So what should we do?” May Van said.

Surviving Polio Twice

John Fallon, now 81, contracted polio when he was a toddler living in the city's Germantown neighborhood. Courtesy of John Fallon

John Fallon got polio not once, but twice. He was 2 1⁄2 when he landed in the iron lung for 15 months in summer 1943. He believes he got sickened when his mom allowed him to splash around in the art deco water fountain at Logan Circle in Center City.

Fallon said he contracted the virus again in 1955 at age 14. He spent another nine months in an iron lung. Nurses read to him Shakespeare, stories about King Arthur and his Knights of the Round Table, and John Steinbeck’s Of Mice and Men. Asked if he was bored, Fallon was almost puzzled by the question. “I had gotten used to it,” he said.

Today, Fallon lives in an assisted-living facility in northeastern Pennsylvania with his wife, Julia. They both got COVID-19 this past April. For two weeks, they were confined to their small living space, a double room without a kitchen. Staff brought them meals. The facility recently had another outbreak and residents had to stay in their rooms for four days. He was reminded of when his polio diagnosis prompted city officials to quarantine the entire block around his childhood home in Germantown.

Like when he was in an iron lung, he made do.

From The Philadelphia Inquirer. © 2022 Philadelphia Inquirer, LLC. All rights reserved. Used under license.