Doctor Adjusts to Life as Patient

September 7, 2003

By Vesna Jaksic

Dr. Fred Epstein’s hands have saved hundreds of children’s lives by removing deadly brain tumors. Now they have trouble with tasks as small as typing.

The world-renowned pediatric neurosurgeon has overseen treatments for thousands of patients, but these days he is the one turning to nurses and therapists to help him recover.

A lot has changed for Epstein since Sept. 30, 2001, when a bike ride near his Greenwich home resulted in a life-threatening head injury. Thrown from his bike after hitting a pothole, Epstein had bleeding in his brain and other serious injuries after hitting the asphalt, despite the helmet he wore.

Now he is wheelchair-bound and has had to stop seeing patients. He may never be able to operate again – but he has continued to work at the Beth Israel Medical Center in New York, concentrating on fund raising and building on his dream to merge state-of-the-art medicine with a healing and supportive environment.
In the days after his accident, however, it wasn’t certain he would even live.

Epstein spent 26 days in a coma and nine months in a hospital. He now sees speech and physical therapists several times a week. He can’t walk, his speech is slurred and he gets tired easily, he said.
“It is hard,” Epstein, 65, said of his recovery. “It is very, very hard because it takes a very long time. It’s hard to give up taking care of patients.”

And he has had thousands of patients from all over the world. A pioneer in his field, Epstein removed brain and spinal cord tumors that were once deemed inoperable. He can’t keep track of all his awards, plaques and certificates.

All this from a man who says he was constantly told he was dumb while growing up in Yonkers, N.Y., because he read slowly, had trouble making sense of numbers and wrote his e’s backwards.
“I was told that I couldn’t go to medical school, that I couldn’t be a doctor,” he said. “I wanted to be a doctor ever since I was 6, 7 years old. . . . I had to work harder. I would go to my desk, I would spend hours there learning. My colleagues would learn in 15 minutes; I would take an hour.”

Every medical school he applied to – and he remembers a dozen – turned him down. He finally got in when his father, who was a psychiatrist, recommended him to a friend at what is now New York Medical College. He got his medical degree, but it wasn’t until he was in his 40s that he found out why school was so hard for him. When Epstein’s then-15-year-old daughter was diagnosed with learning disabilities, he realized he had grown up with them too. He said he is planning to write a book about successful people with learning disabilities. The title will be “You Don’t Have To Be A Genius,” he said.

For seven years, Epstein has worked at the Hyman-Newman Institute for Neurology and Neurosurgery at Beth Israel. Located on the Upper East Side, the INN is a place where nurses are more likely to wear T-shirts with Disney characters printed on them than traditional white uniforms. Children drive a battery-operated toy Jeep to the operating room. Pets are welcome on patient floors and the usual rules for visiting hours don’t apply. There are kids’ rooms where teenagers can watch movies and check their e-mail and parents’ rooms where parents can get a cup of coffee and a bite to eat. Adam the Clown is a regular in the center’s playroom, which is packed with hundreds of toys, games and movies.

The INN is a product of Epstein’s vision to create a healing and supportive environment for patients, their families and staff. He became the center’s founding director seven years ago, when he left New York University Medical Center to accept Beth Israel’s offer to create his dream center.

Instead of the daily 12-hour shifts he put in while he was a practicing physician, Epstein is now at Beth Israel two afternoons a week. His wife, Kathy, drove him there on Tuesday afternoon, ordered his lunch and answered his phone.

In his large, corner office on the fifth floor, Epstein has no medical diplomas. Instead, his walls are covered with framed pictures of baseball greats – they are good conversation starters and help relax everyone, he said. His door tag says “Fred” because he prefers his patients to call him by first name. He doesn’t remember the last time he wore a white doctor’s coat – they intimidate children, he said.
“You can’t change the reason they’re there,” Epstein said of his patients during an interview at his Brookside Drive home. “They’re there because they have a serious problem. But you can reduce anxiety. You can reduce the edge.”

Epstein said he realizes he may never be able to operate again. But he plans to keep working at the INN to ensure there is funding to keep people such as social workers, child specialists and music therapists. He said he wants to make sure every sick child has someone to hold his or her hand.

Epstein still remembers the teenage patient who taught him the importance of comfort through human touch in a poem he wrote weeks before he died of a brain tumor. Epstein said it made him realize that medical technology can’t soothe the fear and loneliness sick children feel.  From then on, Epstein said, he was determined to create a center that offered both the technological and human aspects of care. He said he hopes to encourage other hospitals to create similar healing environments.

Epstein’s colleagues said they are lucky to have him back. Honey Shields, the INN’s director of child life, is among 108 people who left NYU to follow Epstein.
“He listens. He’s such a good listener,” she said. “And his bedside manner is beyond the best. You can’t teach that. . . . He continues to be my mentor and a person who has my vision for the work we do.”

Shields was among many people who came by Epstein’s office to say hello on Tuesday afternoon. A friend of Epstein’s also dropped by with her son, who started third grade this week.
“I’m very glad to have met you,” Epstein, a father of five, told the child as he held his hand. “You really made my day.”

During his recovery, Epstein completed his second book, “If I Get to Five: What Children Can Teach Us About Courage and Character” (Henry Holt & Co.). The title comes from a girl Epstein first operated on when she was 4 years old. She knew the dangers of her brain tumor, but kept naming the things she wanted to do if she got to 5, such as ride a two-wheeler, beat her brother at tic-tac-toe and tie her shoes in a double-knot. The girl survived and is now in her 30s.

But many patients didn’t, and those are the ones he remembers most vividly, he said.
“I never got over feeling like a failure,” he said.

Since his bike accident, thousands of patients and their families have visited, called or written to Epstein, he said. Although it has given him encouragement, it hasn’t eased his recovery, he said.

But his wife was quick to tell him he doesn’t even realize how much the lessons he learned from his patients are helping him.
“These lessons are so internalized,” Kathy Epstein, told her husband of 39 years. “You keep saying, ‘In two months, I will do this, in three months I will do this. . . . That’s exactly ‘If I get to 5.’ “