Photographer's perspective: Life with the Simons

She jumped up on the hospital bed with a familiar confidence, shiny patent leather shoes with white tights, under a knee-high dress. Her mischievous giggle and sweet smile took me by surprise. I was expecting a sickly child. It was hard to believe this little girl with the big brown eyes was fighting for her life.

Candace Simon was a picture of health. But deep within her tiny 3-year-old body, AIDS was destroying her. Her mother and father were also infected with HIV. Only her brothers, Brian and Eric, had escaped the infection.

I was assigned to tell their story.

I thought a lot about the Simons after that first meeting in January 1991. Why was I assigned to this story? I had been primarily a sports photographer, working nights and meeting daily deadlines. This was a story that would take time and a personal commitment. I wasn't sure I was ready.

The responsibility to tell their story weighed heavily on my mind. I had a family of my own -- three daughters, one the same age as Candace. It would be difficult to separate my personal life from this story as I have been trained to do. I would be living their life with them.

Although the questions persisted, I simultaneously felt there was a reason for our meeting. I felt connected somehow. This was a story they wanted told, and I felt a responsibility to be their voice.

During the next six years, I photographed their daily struggles: their joy, their fear, their disappointments and, eventually, Candace's and Nancy's deaths.

The relationship between a photographer and subject is delicate; it can be betrayed at any time. It was essential for the Simons to feel comfortable with me and my camera. I could not tell their story without their complete trust.

There were many times in the early years when I didn't photograph certain situations. I hadn't earned the right. But over time my camera became accepted, and I became a trusted friend. Someone who would portray their lives with sensitivity and dignity. By the end of the project, Nancy and I had developed an unspoken understanding.

I would often visit the Simons more than once a week, spending the better part of a day recording their daily routine. I took more than 18,000 photographs, some of the most emotionally challenging of my life.

In 1993, as AIDS began to take its toll on Candace's health and on Doug and Nancy's marriage, Doug decided he no longer wanted to share his experience with the Star Tribune. At the same time, Nancy's need to speak out about the disease that was about to take her daughter's life grew stronger.

She spoke to schoolchildren, church groups, AIDS organizations and health care professionals. Nancy had an amazing ability to reach out to people and get them to listen. She empowered others to love and to serve. She never believed she was an innocent victim. AIDS was the lot she had been handed, and quite possibly a chance to make a difference during her short life.

"We must be special to God for this to happen to us. He has special plans for us," Nancy said. She was like that, always looking at the bright side despite living with one of the darkest epidemics of our time.

In the beginning, I photographed every significant event: birthdays, doctor visits, first day of school, speaking engagements. As the years passed, I relied more on my instincts, rather than planned events. I would often photograph them with no agenda in mind. The pictures seemed to come through me; I was merely the interpreter.

Many nights I would come in to the office after midnight, when the newsroom was empty. The images felt too personal to develop when anyone was around. It was as if I was processing my own feelings about the Simons family at the same time I was processing the photographs.

During Nancy's final days, we were all searching for answers. Nancy's sister Sandy Scheffler asked me, "Do you think the camera can see things that we can't see?" I believe it can. The still photograph has the power to isolate the moment like no other form of expression. It focuses our attention, picking out the details of life as it passes by.

As Nancy's health deteriorated, we talked a lot about her story and whether she wanted to continue. I don't think any of us knew what to expect when we first met in 1991, and I wanted to make sure Nancy was OK with my being there.

We both knew it wouldn't be easy, but Nancy was unwavering in her commitment. On New Year's Day 1996, Nancy told her close friend Cari Trousdale, "If you are with me and you know I am going to die -- like you knew Candace was dying -- make sure Brian gets here. I want him here. I want the world to see this. I want them to see and know how the story ends."

I will never forget those final days, driving to the Scheffler farm where Nancy was living, pulling into the long driveway, seeing children at play in the yard, cars lined up like a used-car lot, friends and family gathered at the kitchen table or around Nancy's bed.

The Simon family has been an inspiration to me and to most everyone who knew them. It took a special family to open their lives so freely and to share with me the pain and suffering they would endure.

But in the face of all the suffering, there was a light of faith, love and a relentless hope for a miracle.

Mother Teresa, who was quoted at Nancy's funeral, said it best: "There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometimes lose sight of this force when there is suffering, too much pain. Then suddenly the spirit will emerge through the lives of ordinary people who hear the call and answer in extraordinary ways.''

Candace and Nancy ran out of time. Their miracle cure didn't come soon enough. But they provided a light for all who knew them, a guiding spirit to lead us out of darkness.

I hope that these photographs will help you come to know the Simon family, and that they will touch you and give you a better understanding of the indiscriminate path AIDS is cutting through our society.