Interview with “Polio Voices” author, Dr. Julie Silver

How did the Polio Oral History Project start?

I was treating polio survivors, and so many people had never talked about their experiences. They came to see me as a doctor, but a lot really wanted to talk to me about what they went through. I felt I was rushing because I needed to get their medical information. I decided I wanted to record their stories. It also was good for them as they had a place to talk and share their stories. I had men coming in who had post-polio syndrome who had never talked about their experiences, never talked about being in an iron lung. They’d start crying, and say thank god, I have someone to talk to. The last thing I wanted to do was to rush them through it, and say, that’s nice, but where do you have pain?

And then?

The stories were so great and so wonderful. I thought, I can’t be the only person to hear them. I wanted to talk about the selfless men and women who really had saved so many children and adults from a truly terrible fate. If you are a Rotarian or go to a Rotary meeting, you understand the enormous impact Rotary has had, but many average citizens don’t.

Why did you dedicate this book to Rotary?

I had talked to a number of Rotary clubs. I had a lot of respect for RI going in. I was really impressed with the Rotarians who shared stories. The thing that’s so difficult to really understand is the impact of what Rotarians have done – so that something didn’t happen. If not for Rotarians, so many people would have contracted polio, would have paralysis, if they survived the disease. You’re measuring something that didn’t happen. It’s hard to really understand that. In my office I see how hard it is for children and adults to live with paralysis and the effects of post-polio syndrome.

Do you have any personal memories of polio?

My mom had polio, and so did her brother and dad. My grandfather always walked with crutches and a long leg brace. My mom was the next most affected. She’s had a lot of problems with post-polio syndrome, with prolonged standing and walking. I think she was eight when this happened.

What else do you remember?

I remember my grandfather’s doctor contracted polio and died from it. I remember hearing that my grandfather was out of work for more than a year, and that he was the sole provider for the family because my grandmother stayed home and took care of four kids. My grandmother had a place where she would go and cry away from the family, so no one would see her. My grandfather’s company held his job for him. He was an engineer. He went back to work, but buildings were not accessible back then, so he was placed away from his peers and colleagues. It was very lonely and hard for him. He never was on the same fasttrack for promotions.

When I was 12, I remember having dinner with my grandfather. A waitress asked me what he wanted to order. I remember looking at her and rolling my eyes and thinking, why are you asking me? Why aren’t you asking him? Later I realized she saw his crutches and assumed he wouldn’t be able to order appropriately.

You were diagnosed with breast cancer in 2003. How did that affect you?

It’s hard to go through a serious injury or illness without understanding patients better. I like to think I was empathic before, but perhaps I am a better doctor now. My children -- a son, 15; daughter, 11; and daughter, 7 -- wrote a book for the American Cancer Society called My Mom is Getting Better. They were on the Today Show. The book is about surviving and healing.

One thing I’ve learned from my patients is resilience and grace under fire. I have seen so many people, especially polio survivors, who are so graceful despite serious illness. I’ve really watched how people have really terrific lives despite amazing adversity. At times it seemed very hard to find that grace. It took a while before I was professionally creative and then I had all these stored up, pent-up ideas, and I really wanted to get them out. You’re actually seeing a very prolific period in my life right now.

How did you decide which volunteers to include?

People contacted us. It was strictly voluntary. Oral history really works best when somebody wants to tell the story. Some are very reluctant. It’s just too painful to share the story. That’s not ideal.

Do you think it’s important that polio be eradicated? Why?

I do think it’s very important that polio be eradicated. It’s the kind of disease that’s hard to contain if there are outbreaks. Many subclinical cases can’t be identified until it’s too late. With smallpox there weren’t subclinical cases. They had the pox so you knew they had the disease. Polio is really a continuum. When I tell you about my grandfather and my mother and her brother, it’s possible the whole family had polio, but it was so mild, they didn’t know it. It’s possible for people to slip through the cracks, and you don’t notice until they’re sick and have paralysis.

Part of my deep appreciation of Rotarians and their work stems from what I see in my office day to day, and how difficult it has been for people who survive polio. There’s no doubt that polio left a terrible legacy for many, many people.

Do you think that polio will be eradicated?

I know RI and WHO [and UNICEF and the CDC] are working toward that goal. They’re so close it’s hard to imagine they won’t reach that goal. I’m grateful to Rotarians for their commitment to eradicating polio and commend them.

About Julie Silver

Julie Silver, MD, 43, is assistant professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation and chief editor of books at Harvard Health Publications. A breast cancer survivor, she has written and edited more than a dozen books focusing on recovery from serious illness and injury, including Super Healing, published in 2007. She is the coauthor, with Daniel Wilson, Ph.D., of Polio Voices: An Oral History from the American Polio Epidemics and Worldwide Eradication Efforts. Her efforts were featured in the Smithsonian exhibit, Whatever Happened to Polio, which now has a permanent home in Warm Springs, Ga., USA. An excerpt from the book appeared in the March 2008 issue of The Rotarian.