Marilyn Shuler is perhaps best known for her work as the director of the Idaho Human Rights Commission from 1978 to 1998. She fought against the Aryan Nations and pushed for basic human rights in the Gem State.
But what many people don’t know is that at the age of 10, Shuler was diagnosed with polio while she was living in Salem, Oregon. She sat down in the StoryCorps booth in Boise to talk about how it felt growing up in the 1950s with the illness.
“What were your first symptoms?” asked Shuler’s friend Marcia Franklin, a producer and host at Idaho Public Television since 1990.
“Just feeling like I had the flu, and I just needed to go home and lie down,” said Marilyn Shuler. Before she was diagnosed, Shuler rode her bike and played outside in local parks, just like other children she knew.
“How did it progress, what kind of symptoms happened after you had the flu feeling?” asked Franklin.
“Well, I don’t remember being in great pain or anything I just remember I couldn’t move. There were certain muscles that didn’t work anymore,” explained Shuler.
“So you never had to be in an iron lung?” asked Franklin, referring to the airtight metal tank that served as a breathing device for many polio patients.
“No, I didn’t, but a lot of other children did,” said Shuler.
“What was the atmosphere in your community, in Salem, Oregon around that time?" asked Franklin. "Were a lot of people coming down with polio, were people in iron lungs, was there a sense of paranoia and fear?”
“There was a real stigma having had polio, because of the fear,” said Shuler. “I became an immediate social isolate, because I don’t know whether it was my own friends or their parents, but I didn’t have any friends. I did try and go to school. I remember once falling down and the teacher didn’t even try and help me back up. I think they were afraid of us too, so it was just absolutely horrible.”
“During the time of 5th, 6th, 7th grade, how were you able to get around, were you using crutches?” asked Franklin.
“I was in a wheelchair part of the time and then crutches,” said Shuler.
“Did you have to have operations as well?”
“Oh yeah, I had a lot of operations,” said Shuler. “I had two spinal fusions which was just Chinese torture where they put your whole body in a cast and then bent it into shape because I have scoliosis because the muscles weren’t holding my body straight and then took bones from a cadaver and put them in my back. Each of those took about nine months. They weren’t fun.”
Franklin asked, “How did you keep your spirits up at that time?”
“I think I was just blessed to have parents who were just absolutely fabulous,” said Shuler, “because instead of them saying ‘oh you poor little girl you have polio, poor this, poor that,’ my mother, who would know the other children that were in the hospital would say ‘oh, you’re so fortunate. I’m so glad. The little girl down the hall, I’ve been talking to her mother, she can’t move her hands at all. Just think, you’re so lucky, you can use your hands, I’m so glad.’ Then she’d tell me about the child that was in an iron lung and couldn’t breathe and we’re so fortunate. So I always felt quite lucky.”
“Did you ever have down times though? I mean you were an only child. So it’s not like you had a sibling to play with,” said Franklin.
“I used books a lot, I love to read,” said Shuler. “So I would read books a lot and so that helped.”
Shuler endured hot packs and exercises, like swimming, along with operations. She recovered somewhat and by college she could walk unaided and even carry books. She had two children. Shuler says her biggest adventure was walking with her husband into the Sawtooth Mountains for ten miles, five miles in, and five miles out. She said that was really an accomplishment. But over time, her muscles started to fail again.
“Even since I’ve known you, which is about 20 years, when I first met you, you were walking somewhat with some crutches and then you were in a wheelchair you could push with your hands, and now you’re in a motorized wheelchair,” said Franklin. “Do you feel depressed or sad about that?”
“There’s nothing you can do about it” said Shuler. “I really have accommodated my life, so that I lead a full life.”
Shuler said because of her experience with polio, she has been an advocate of childhood vaccinations, to ensure other children don’t get the disease.
Marilyn Shuler and Marcia Franklin recorded this interview at the StoryCorps booth in Boise. StoryCorp is a national initiative to record and collect stories of everyday people. Excerpts were selected and produced by Boise State Public Radio.
Copyright 2013 Boise State Public Radio