An Extraordinary, Ordinary Girl A decade after radical brain surgery, Beth Usher, now 17, has made a miraculous, inspiring comeback.

April 13, 1997|By Scott Shane|| TC | Scott Shane|| TC,SUN STAFF

STORRS, CONN — Storrs, Conn. -- Standing near Beth Usher on the sidelines of a school soccer game, a rude stranger noticed the partial paralysis of the teen-ager's right hand. "What happened to you, honey?" the woman asked. And Beth, in less than the split-second of a kick on goal, sent her answer spinning back. "I was injured in the Vietnam War," she replied, training her calm, brown eyes on the woman.

Humor is the fence she has built around her feelings. It is the barrier between Beth Usher the medical miracle and Beth Usher the teen-ager struggling to be normal, who likes jigsaw puzzles and creative writing, women's basketball and "Ferris Bueller's Day Off."

On curious little kids, she tries: "I went bungee-jumping off the Empire State Building without a cord." To older children, she explains: "My biology teacher did a really strange experiment on me that went terribly wrong."

The truth is, it was a strange experiment. But it wasn't her biology teacher and it didn't go terribly wrong. It was a surgeon at Johns Hopkins Hospital, and it went remarkably right.

Ten years ago, at the age of 7, Beth Usher was snatched from a decline into total disability by surgery so radical as to seem to a layman almost absurd. In one grueling day in the operating room, surgeon Benjamin S. Carson removed the entire left hemisphere of her brain.

The path to Hopkins had begun on a Connecticut playground two years earlier, when the apparently healthy kindergartener suddenly suffered a seizure. Then there were more seizures, growing more severe and more frequent. Kathy and Brian Usher's frantic search for a medical answer finally ended with two devastating words: Rasmussen's encephalitis.

They were told the rare disease was eating away at Beth's brain, eroding her ability to walk, talk and learn, and that the only alternative was hemispherectomy. It is a procedure daunting in risk and complexity but medievally primitive in concept: Half the brain is diseased, so you cut out half the brain.

Meeting Beth Usher today, you could focus on the unavoidable physical consequences of the surgery for the arm and leg previously controlled by the diseased hemisphere. She walks with a pronounced limp on the right; her right hand is useful for support or for pinning a piece of writing paper to a desktop, but she cannot consciously grip or manipulate with it. She has no peripheral vision on the right, which probably will prevent her from ever driving a car.

You could focus, too, on more subtle consequences. Though studies of Hopkins' hemispherectomy patients have found no loss of IQ after surgery, there can be a mixed bag of speech and learning difficulties.

Beth has a weak short-term memory that requires constant drilling to master schoolwork. In her junior year at a competitive public high school, she is placed in standard history and science classes but gets special education support for math and English; she studies doggedly and often makes the honor roll. She speaks fluently and articulately but lisps her Rs and SHs and still receives some speech therapy.

You could focus on weaknesses, on what was lost. But what is most striking is what remains after this terrifying rending of what makes a human human.

Beth Usher is the girl she was before surgery -- more mature, but with the same wise-guy manner, the same guileless empathy with the underdog, the same ability to charm. Plus, she can kill her brother at pingpong, and he has both hemispheres.

A decade after her operation, which was described in a series of articles in The Sun in 1987, her family's story is more than a further chapter of a medical sensation, years after the hospital press releases have been filed away.

It is also the story of devoted parents, with the emotional investment in their children that defines middle-class America, adjusting their expectations for their child. It is the story of an extraordinary girl whose nearly ordinary life testifies to the astounding adaptability of the human brain.

Is she ever, Beth is asked, angry about her limitations?

"What limitations?" she says, with a glimmer of a smile, lobbing a question back at her inquisitor.

Does she ever, she is asked, stop turning her difficulties into humor?

"I have to do that," she says, "or I'd get upset about it, and what's the point? I try to see it as an opportunity, to understand how other people feel about whatever problems they have. I'm really pretty lucky."

On a crisp February day at Dorothy C. Goodwin Elementary School, Beth is back at her alma mater, grades K-4. Now she works here three afternoons a week, helping look after children in the after-school program.

It's a work-study job through her high school, but it's also an aspiration. "I'd like to go to college, and then I'd like to become a teacher," Beth says. "I enjoy working with little kids. They're so honest. Just talking to them, you learn a lot."

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