Chronicling Kids’ Fights for Survival

NEW YORK —  Last December, Jill Krementz, the well-known photographer, sat quietly in the back seat of a taxicab.

Nothing unusual in that, except that the entire East Side was crazed and cranky over “Gorbylock.” All around her, cabbies and truckers, pedestrians and passengers fumed and growled over the immovable traffic stalled by the departure of Soviet leader Mikhail Gorbachev.

Krementz just sat there and hummed to herself.

Finally, the exasperated cabbie turned around and grumbled: “Lady, I can’t believe how calm you are. How do you do it?”

‘I’m Healthy’

She answered simply: “I’m healthy, and I’m going home to a healthy husband and child.”

It’s the kind of thinking that comes from spending two years chronicling the lives of 14 children with serious illnesses and disabilities. Krementz’s latest book is “How It Feels to Fight for Your Life” (Little, Brown, $15.95). It’s her 26th book and the fourth in her “How It Feels” series; other volumes have dealt with divorce, adoption and a parent’s death.

“I try to do subjects that others stay away from,” she said recently over cappuccino at a Third Avenue bistro. “They don’t scare me. They certainly have a toll and they make me very sad, but I do them for a reason.”

She does them for the children.

“I want this book to be inspiring to other children,” says Krementz, who lives with her daughter, Lily, and husband, author Kurt Vonnegut, in a four-story East Side brownstone. “I chose the title because that’s what these kids are talking about.”

Each profile includes Krementz’s photographs and text in which the child tells his or her life story.

Not Just Transcription

“Some people think that I just turn on the tape and transcribe it,” said Krementz. “Sometimes the children think that.”

Not so.

Krementz interviews parents, nurses, doctors, friends, and then reaches into the children’s thoughts.

“I try to put a stethoscope on their hearts so that I can listen to their innermost feelings,” she says.

It’s a world of anger and anxiety, fear and hope.

“Having open-heart surgery has definitely changed my thinking,” says Joey Buck, 14. “One thing I can say for sure is that now I know how to fight for my life and never give up hope. And I know I can live through an incredible amount of pain. When you’ve been as sick as I have, it makes you grow up faster.”

Helping Krementz celebrate the book’s publication will be Joey; Alisha Weissman, 16, who is fighting epilepsy; and Rachel DeMaster, 10, who is fighting diabetes. Also coming will be William and Helen Kleinegger, whose son, Michael, was diagnosed with cancer of the blood when he was 15. He underwent chemotherapy and lost 50 pounds.

“When you’re really sick, no matter what your sickness is, you have to accept what happened and face up to it, no matter what,” Michael says in the book. “You have to fight, fight, fight! You’re not going to help yourself if you run away.”

Michael died on May 23 when he was 16.

“It was one of the saddest days in my life,” Krementz says.

But she also sees the positive.

“Because of his attitude, Michael lived a much better life than otherwise,” she says quietly.

“He lived with hope.”