Photobetty -- Pauline Lubens
 

My friends and family often tell me I have an exciting career --  overseas travel, coverage of major televised events, political conventions, natural disasters, sporting events, celebrities.  What a privilege! When they ask me what "big exciting'' stories I'm working on it's those high profile ones they have in mind.

However, for me the really "big'' stories are those that offer me the chance to be touched by ordinary people who, for some strange reason, consent to allow me to enter their lives. That is the true privilege photojournalism offers. The true challenge of photojournalism is to capture those lives - to give a human face to the issues we confront and the events we follow.

Telling the story of Ryan Ammerman's death and the anguish of his family was a special  time  in my career. It was the second of two stories I shot to illustrate the right-to-die issue; The first one, for which I also wrote the text, was about an elderly woman who was dying of cancer and decided to come home, forego anymore food or medication and die surrounded by family and friends.  Though I shot both stories over eight years ago, they still best reflect the essence of what I strive to do and the work which I find most rewarding.

Ryan,14,  had been in a persistent vegetative state, or coma, since he was two years-old. He'd been picnicking with his family when he began struggling to breathe. His parents rushed him to the hospital, but a sequence of serious medical mistakes cut off the flow of oxygen to his brain and he'd been essentially brain dead all those years.

After 12 years of waiting for any sign of improvement his mother, Linda  Belanger, finally made the decision that she wanted to allow him to die by stopping the feeding through the tube in his stomach.

A Detroit Free Press writer and I first spoke to Linda around a year before she finally brought him home. He was living in a nursing home at the time. At lunch she seemed nervous, tense, and drained. I talked to her at length about the importance of telling her story, the tale of a mother who had the strength to let go of her son. A mother who was anguished about making a decision with which outsiders might disagree and over which they might judge her harshly.

The coverage began slowly, as it always needs to on such sensitive stories. Linda took the writer and I to visit Ryan in his nursing home. He was also sent to a school everyday, which was required by state law, where he lay motionless all day, unless someone came to turn him in an attempt at therapy. It was clear he was completely non responsive.

That day I shot a picture of him lying under a giant mural illustrating the children's book "Where the Wild Things Are." He was alone, the light was low and as I made that image I realized I was starting on a very special story.

I didn't really shoot much else of Ryan, except a few pictures in the nursing home for around a year. I kept in touch with Linda. I visited. Because the presence of a camera makes it  harder for photographers to establish a comfort level, I spent more time with her than did the writer.  She kept  us both updated on  her efforts  to take him out of the nursing home where she was facing opposition. She was petrified that someone would try to prevent her from  going through with her plan to allow Ryan to die. She met with a local hospital about bringing him there to die, but that fell through.

Eventually, after finding a hospice nurse to help with Ryan's final days, Linda decided to bring him home.

That's when my coverage resumed. For six days, after Lou carried Ryans lifeless body up the steps of their home, I photographed Linda and the family surrounding Ryan, coping with the decision they'd made, and their final hours with him the day he died.

Because I'd spent so much time with Linda for that year it just seemed natural to her that I was there. Before I even had finished deciding whether to ask her if I could sleep at the house, she suggested it. So I essentially lived there,  photographing when I thought it was appropriate -- when the moments appeared --  or otherwise talking to the family.

Lou and the hospice nurse stayed up with him the entire night before his death and I joined them for most of that, though I crashed for a few hours at some point.  As the sun rose and crisp light was streaming though the windows of the house, they all gathered around to support one another in Ryan's final hour.

When I shot the first story on the elderly woman, I became emotionally involved in a way that I backed myself off from shooting the most intense moments. And I never felt the story really captured the depth of the experience.

So as Ryan was dying and his family was struggling not to fall apart, I photographed knowing I wanted all those people who were not in that room to feel  just went on that day.

It meant a lot to me to tell this story  -- as it has to tell those I've done since then. Again, I'm still amazed by the doors which photojournalism opens for me. And I'm still amazed by the privilege.

That privilege to tell these stories.

--Pauline Lubens