Mary Novotny Jeffries was 11 when she lost her right leg, from the hip down, to bone cancer.
When she returned to the home she shared with her parents and eight siblings on Chicago's South Side, everything — and nothing — had changed.
"I didn't have time to live out my fear that my life was ruined," recalls Jeffries, 62. "I was on call to do my share of the dishes. My brothers and sisters didn't make a big deal about it."
Her mom offered to hire a tutor to save Jeffries from walking to and from her parochial school each day, but she declined.
"I remember thinking, 'I am not going to be singled out. I'm going to school and I'm going to catch up with my class,'" she says. "The only concession was one of the nuns said I could stay and work with her in the library so I didn't have to walk home for lunch. Of course, I was thrilled because I got to stay there and read all the Nancy Drew books.
"It was an opportunity to work my way through something that I thought was a nightmare," she adds. "I had a choice to either get busy and do what I wanted to do or be this kid people felt sorry for."
Jeffries carried this spirit throughout her life's work as a registered nurse and advocate for amputees and their families.
In 1979, she launched the Families and Amputees in Motion support group while pursuing her master's degree in nursing at the University of Illinois at Chicago. She founded the Amputee Coalition of America in 1986 (amputee-coalition.org) and the National Limb Loss Information Center in 1997. She counsels and trains amputees in locales as close as Chicago and as far away as Haiti, where she traveled after the devastating earthquake of 2010.
Jeffries' daughter, Anne, 32, is getting married in a few days, so many of her hours now are happily spent planning for the event. Jeffries also has a son, Tom, 34, and three stepchildren with her second husband, Ed: Alexia, 38, Jeff, 36, and Rob, 34. (She prefers the term "bonus children.")
"I am in a point of my life where I'm almost afraid to ask how lucky can a person get?" she says.
Following is an edited transcript of our conversation:
Q: What did you do in Haiti?
A: There were many people who needed basic prosthetics, but more important was helping to change the culture to get over the idea that amputees are useless individuals. I had conversations with people who asked, "Why did you waste your time saving their lives?" I traveled to a number of centers and we had a week to fit and train handfuls of people. My most important part isn't what happens at the time, but a year or two years down the road. That 14-year-old kid who learned how to walk and goes back to school and kicks a soccer ball will be able to do that when he's 16 and 18 and goes to college. You're not handing them something. You're teaching them how to keep going.
Q: What's your reaction when you see the bomb victims in Boston who are suddenly amputees?
A: I have seen people in every phase of life who have major disabilities who are so accomplished — I'm talking sports, law, journalism. I see so much courage. I do believe networking with other amputees and helping raise awareness will help them feel much less isolated. People are better at coming out of the woodwork these days. It's nothing like years ago when mental illness was hidden and cancer was not discussed and people did not go out and stand for each other. We stand for each other today.
Q: Was there was a lack of resources prior to you founding the Amputee Coalition of America?
A: It grew out of a desperate need to help people facing limb loss. Because of feelings of grief, disbelief and isolation, people experiencing a loss aren't always able to participate in decisions about their future. Without information and support they often lack any hope of leading a normal life. Exposure to a well-adjusted person living with a similar loss was a logical component to the success of any rehabilitation program.
Q: You've called yourself a "lucky cancer patient." What do you mean?
A: I consider myself lucky in that I grew up in Chicago and had access to the best resources in medical, surgical, rehabilitative and prosthetic care available in the country. I was diagnosed and treated promptly. At the University of Illinois amputee clinic I met children and adults who had lost limbs. A team of therapists drilled me on safe use of crutches, walking, climbing and even falling with my first prosthesis. I was even fortunate enough to have specialists from Northwestern University's prosthetic research program work on the design of my first prosthesis, which was custom made for the activities and lifestyle of an adolescent girl weighing 50 pounds. Most prosthetics were developed in the post-World War II era for veterans, and designs had not changed much.
Q: Who is your living hero?
A: Dr. Ray Pellicore, an orthopedic surgeon who directed the University of Illinois clinic in the '60s. He focused on each person's abilities rather than their disabilities. He challenged the status quo, which at that time had very low expectations, especially for patients with missing limbs who needed prostheses, wheelchairs and other devices. He became my mentor and lifelong friend. He is 97 years old and maintains that he experienced more satisfaction and learned more from the patients than he could ever give them.
Q: What's your favorite way to spend a free day?
A: Anywhere near or in water. I love to swim, scuba dive and even relax on our pontoon boat any time of the year. I find water refreshes me, relaxes me and provides a great means of exercise and enjoyment in my life.