Rose Williams was walking with a leg brace in 1955 when she lined up with her classmates to get her first dose of the polio vaccine. She knew then, at age 7, that it was too late.
“I remember thinking, `Why bother?'” she said. When she was 11 months old, the disease had racked her body.
As the world commemorates the 50th anniversary of Dr. Jonas Salk’s vaccine, which has virtually eliminated the disease in developed countries, Williams and some of the nation’s 250,000 other polio survivors are contemplating a life lived differently.
Williams, 56, has held three jobs in her life, married twice and has a daughter. There are times when she has asked “Why me?” but she says she has lived a full life. “If I did not have polio, I would not have turned out the way I did,” Williams said.
More Top Picks Best Washers And Dryers
Survivors remember how polio could strike and transform an able-bodied person in a day. They remember feeble legs, twisted backs and lungs so weak they could barely draw breath. They recall how a child’s head protruding from a hulking iron lung became a dreadful emblem of the period.
For this group–the last generation of Americans to have polio–the affliction was a formative experience. For better or worse, they say, it shaped their lives.
The disease led Williams and most of the city’s other young polio victims to the doors of Spalding School on the West Side.
Besides being the city’s first public school for the physically disabled, it was one of the most racially integrated schools of its day.
From kindergarten through her high school graduation, Williams developed close friendships with Asian, Hispanic and African-American students she otherwise would never have met. The great equalizer was disability.
“As far as the children were concerned, there were no racial boundaries. There were just children,” said Gwen Lee, 56, who grew up on the South Side and has been friends with Williams since the two met in kindergarten.
By then, both girls had been through their worst stages of the disease.
Williams’ low point was when her mother found her completely motionless in her crib.
For Lee, too, the onset was sudden and tragic. She was on a family visit to rural Mississippi when she was 3. Her grandmother called “little miss lazy bones” to the dinner table, but she could not move from the bed where she was taking a nap.
Her grandmother came to her side, lifted her arm and watched it fall.
“The horror that was on her face . . . ” Lee said.
Back in Chicago, Lee spent a year in the hospital. She remembers the “clanky clicking” of the iron lung that helped her breathe.
Eventually she regained use of her upper body, but she would never again walk unaided.
As a child, Lee said, she did not give her disability much thought except to reckon, “I must be pretty special that God chose me to deal with this.” By her adulthood, she had grown so accustomed to her disability that she never thought about being able-bodied.
Others who got polio later in life had a different experience.
Joan Bernstein was a 24-year-old mother of two in 1952 when she noticed an ache in her leg that made her limp. That was the last time she would walk without braces or crutches.
Still, she clung to an active life. She had two more children, worked part time as an editor at a community newspaper and, after she divorced her first husband, married a fellow polio survivor who had also been struck with the disease as an adult.
Her husband, Everett, was diagnosed in 1944 when he was a soldier stationed in New Guinea. He awoke on his Army cot unable to get up. Polio left him with weakened legs and arms, but eventually he walked again.
`Quite a full life’
Despite their affliction, the couple never let polio interfere with their love for the outdoors.
When they went kayaking, Joan did most of the paddling because she had more upper body strength. Everett carried the camping equipment, while Joan hiked on crutches.
“We led quite a full life with certain things that were hard for us to do,” said Joan Bernstein, 76. “We do things a lot of people our ages had given up long ago, so we shouldn’t complain.”
She said she never considered herself “crippled,” but a normal person. “That makes a big difference,” she said.
Everett Bernstein, 81, proudly pointed to a 1965 photograph of his wife trekking through the Indiana Dunes National Lakeshore, the end of her crutch digging into the white sand.
Both are less active now.
Joan Bernstein relies on a scooter to get around. Braces cover both legs. She still swims occasionally but no longer takes walks around their lakefront building in Hyde Park.
About 15 years ago, she started to weaken. Doctors said she was developing post-polio syndrome, a condition in which polio survivors experience fatigue, pain and weakness, sometimes in areas not initially affected.
More Top Picks Silent Migraine Symptoms Migraine Without Headache
Thirty-five years after the initial onset of polio, one-third of patients experience new weaknesses as the nerves that originally took over the work of damaged nerves begin to break down, said Dr. Irwin Siegel, an associate professor at Rush University Medical Center. He has treated polio patients since the early 1950s.
The syndrome affects about 25 percent of polio survivors in the United States, Siegel said.
Struck down again
Lee said she feels as if polio has returned in recent years with the onset of persistent rotator cuff problems.
In the early 1990s, Williams was forced into a wheelchair after she became too unsteady on her feet–a problem she blames on her childhood battle with polio.
“It’s like polio struck me down again,” she said.
Everett Bernstein says he and his wife have also faced new ailments that they overcome in tandem.
“We have two good arms between us,” he said.
———-