Reaching back for 'forgotten' disease
One morning in August 1952, after he had finished his sophomore year at Boston University , Joel Samuels awoke with a throbbing back. Not surprisingly, given that his summer job was delivering groceries, his doctor suspected a strained muscle.
But the pain quickly spread to his neck, and then Samuels grew feverish. He began vomiting and his whole body ached. This time, the doctor sent him straight to Children's Hospital in Boston. When his left leg buckled as he tried to climb onto an examination table, Samuels began to realize something was deeply wrong.
Samuels, whose story is included in a new oral history of polio patients, was diagnosed with the disease at the peak of the epidemic in the United States, with nearly 58,000 cases reported across the country that year. He was kept in isolation for nearly a week, and when his breathing started to fail, he was encased in an iron lung, a hulking machine that forced air into his lungs. Instead of returning to BU, Samuels lived at the hospital for nearly a year, strengthening his muscles until he could walk with crutches.
"I was determined I was going to walk out of there," said Samuels, now 74 , who lives in Boston.
The oral history, compiled by Harvard Medical School assistant professor Julie Silver , is scheduled to be published later this year. Silver, also director of the International Rehabilitation Center for Polio at the Spaulding Rehabilitation Hospital facility in Framingham, wanted to preserve the stories of those who struggled with a disease nearly forgotten in America.
"It's important to share these stories while we still have people to tell them," she said.
Polio dates to ancient times, but outbreaks swept through the United States in the first half of the 20th century. The virus spread from person to person, often striking children in the warmer months. Although most people who got the virus had few or no symptoms, some became paralyzed, and others died. There is no cure for polio, which still exists in a handful of countries.
Silver became interested in telling the human stories of the disease after she began seeing polio patients more than a decade ago. Although it had been many years since they had been infected with the virus -- and many had made a complete recovery -- they were experiencing new symptoms: muscle weakness, fatigue, joint pain. Post-polio syndrome, which attacks as many as half the people who once had polio, is still an enigma to doctors.
Silver has a personal acquaintance with the disease: Her mother, uncle, and grandmother all contracted polio. She remembers her grandfather walking with a long metal brace on one leg.
"I think many people think that polio is a forgotten disease," Silver said. "And in many respects, it is."
David Rubin was 9 years old in 1935 when his muscles suddenly began screaming with pain and he could no longer move his legs. A doctor diagnosed him with polio after he gave the boy a spinal tap on the kitchen table. His family believed he had been infected in a public swimming pool.
Rubin was housebound for eight months, spending much of his day lying on a canvas bed, rigged so he wouldn't get bedsores. He still gets emotional remembering the excruciating physical therapy that stretched his muscles. "It was a pretty lonely time because I couldn't go out and play with the kids," said Rubin, 81.
Slowly, he began to regain the use of his legs, and at age 10 started to learn to walk again. Rubin, whose family moved to Boston in 1942, recovered completely and went on to work in his family's real estate development business.
It wasn't until about a decade ago that he began to notice new symptoms: He began walking with a limp and gradually his legs became weaker. When he leaves his apartment high above the Back Bay, he often moves around in a motorized scooter. He now walks with metal crutches.
Nearly 50 years after his infection, Rubin once again is faced with fighting back against polio. "It was a surprise to me," he said.
Like Rubin, Dorothy Arnold had thought her battle with polio was long over. She was 23 years old, and seven months pregnant, in 1947 when she got sick. "I said, 'I don't care what I have as long as it doesn't hurt the baby,' " she recalls.
She spent a month in Massachusetts General Hospital and slowly got stronger. She had a normal delivery, and continued to ski and ice skate.
But about a decade ago, Arnold -- a well-known artist who lives on Beacon Hill -- began noticing that her ankles were painful, and she started feeling unusually tired.
"The fatigue is the worst and that is a son-of-a-gun," said Arnold, 83.
Joel Samuels, the BU student, returned to school and graduated a year later than he'd planned.
Before polio, he had contemplated a career in medicine or dentistry; afterward, he decided that walking with crutches might make those jobs difficult. Instead, he worked as a counselor with the Massachusetts Rehabilitation Commission .
Now he relies on a motorized wheelchair. He still drives, using a specially equipped minivan with hand controls and a ramp for his chair. An assistant comes to his Huntington Avenue apartment to help get him into and out of bed.
"In one respect," he said, "it's like getting older sooner than you might think."
Kathleen Burge can be reached at kburge@globe.com 