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."
She is an in-between figure in the neat classroom, a bridge between the kids and the teachers who run the program. At 17, in a baggy sweat shirt and jeans, she looks a couple of years younger, brown bangs framing red cheeks and a full set of braces. Her manner is tentative, self-consciousness masked by wisecracks: her parents are "turning white"; her hobby is "causing trouble."
She recalls, hazily, the seizures that consumed two years of her life: a feeling of dizziness, a fall, a right leg and arm that "would not listen to me," she says. "It wasn't as painful as it was scary."
As the children clatter into the room, Beth stands by and gives them high-fives with her good left hand. One little girl stops and reads haltingly the inscription on Beth's Snoopy sweat shirt. "I love life," it says.
"Do you?" the girl asks.
"I really do," Beth replies.
As the kids raucously gather to go outside, Beth tries a trick to keep them in order. "Count backward from 100," she says, setting off a determined chorus.
On the playground, Beth joins a game of freeze tag, able occasionally to catch a kid despite her slight hobble. But when a boy wants his shoe untied and retied so he can dump the sand out, she calls to a teacher for help. She only recently mastered the laborious skill of tying her own shoes with one hand, she says.
In a sense, Beth's surgical recovery continues today. Its beginning might be dated from 1 a.m. one morning in March of 1987, as she emerged from the monthlong coma that followed her surgery. "Dad. My nose itches me," she said, proving she had not lost the ability to speak.
After two months at Hopkins, there were two more months in Newington Children's Hospital near her home. Then there were several tedious years of physical therapy, as she regained the ability to walk and run. Previously right-handed, she had to learn to write, eat and do other tasks with her left hand.
For a while, Beth had word-retrieval problems, saying, for example, "that thing that keeps rain off your head." Eventually Beth learned to self-cue by associating pictures and initial sounds: she would picture an umbrella, remember the "U" sound, and recall the word.
Her parents played rhyming games with her, sat beside her as she did her schoolwork, taught her math and geography by playing imaginary travel games with the maps on the wall.
In the first years, every headache would panic her parents. But she's never had pain in her left brain cavity, which filled with spinal fluid immediately after surgery.
Once, she had to return to the operating room. In 1991, Beth's physical therapist diagnosed curvature of the spine, which doctors said might be related to muscular weakness on her right side. When the orthopedic surgeon declared she'd need a major operation for spinal fusion, the Ushers were overwhelmed.
"I'll never forget it," Kathy Usher says. "We were devastated when we walked out of his office. We couldn't talk. We were driving in silence. And Beth said, 'Come on, guys. It's not like I have to have more brain surgery.' So we went out for ice cream, and joked about 'What's it going to be next?' "
That has been Beth's mode for 10 years: cheering her parents through her own trials. "I've put you through so much," she tells them.
At the age of 12, she wrote a booklet for children entering the hospital. Titled "The Sun Can Come Out Again, or: How I Got Rid of Something Bad!" it was dedicated to "two special doctors" whom she credits with saving her life, neurosurgeon Ben Carson and neurologist John M. Freeman.
Beth's account of seizures and surgery is followed by her 50 rules for hospital survival. Along with predictable cheerleading are maxims with an edge -- "Pretend you're asleep when people you don't like visit you" (No. 6) and "Make your brother or sister wait on you in the hospital -- it's the only time they will" (No. 19). Some are purely practical, such as No. 33: "Bring your sneakers instead of slippers. I think slippers are slippery in the hospital."
The booklet's second dedication is to Fred Rogers, the gentle sovereign of kids' public television.
It is not distant hero-worship. Beth had written to Mr. Rogers before her surgery; after the operation, when she was comatose, he flew to Baltimore, spent an hour in Beth's room at Hopkins, talking to her and introducing puppet characters. Her eyes were open, but she did not respond.
Having prohibited the hospital from publicizing his visit, Mr. Rogers flew back to Pittsburgh. Beth learned of the visit only later, through her parents' snapshots.
Since then, Beth and Mr. Rogers have regularly exchanged notes and calls; in 1991, after she wrote to him, he agreed to be commencement speaker at the University of Connecticut, where Brian Usher is an admissions officer and Kathy Usher runs the scholarship program. In his talk, he mentioned the 12-year-old Beth and quoted her proposed wording for his speech: "I am here to tell you to be friendly to everyone and to do little favors for people. Then they will like you and feel better about the world."
Scientists sometimes describe the human brain as the most complex object in the known universe. Its mysteries are yielding only slowly to scanners and scalpels. Among those mysteries is the astonishing ability of the remaining hemisphere of a young surgery patient to take over most of the functions of the excised half.
Hemispherectomy takes half of the cerebral cortex, about 40 percent of the brain's volume -- four billion of the 10 billion neurons whose electrochemical connections produce sensation, intellect, emotion, personality. It leaves untouched the lower, more primitive parts of the brain that govern such unconscious functions as respiration and heartbeat as well as gross movement of the arms and legs.
Over the past 30 years, Hopkins surgeons have performed 68 hemispherectomies for seizure disorders, the majority done since 1985 by Carson.
Most of the patients were children suffering from Rasmussen's encephalitis, in which inflammation cuts through half the brain like a slow-moving fire. The rest had intractable, one-sided seizures as a result either of birth defects or strokes.
Four patients died during or after surgery. One, who had undergone previous surgery elsewhere, remains comatose months after hemispherectomy.
Beth and one other patient recovered only after prolonged coma, a complication Carson attributes to trauma to the brain stem. To reduce the risk of bruising, he now removes the hemisphere lobe lobe instead of all at once.
That most of the patients survive and recover so completely remains a perpetual surprise even to those who watch it happen again and again. Carson, director of pediatric neurosurgery at the Hopkins Children's Center, performs hemispherectomy nearly once a month now, but he says: "If I do 1,000 of these operations, this will never become routine. I have the utmost respect for the human brain."
From the recovery of the hemispherectomy patients have come some remarkable revelations. Consider, for example, memory.
As Beth recuperated a decade ago, Brian Usher anxiously peppered her with questions, testing her recollection of vacations, cousins, arithmetic. Finally, exasperated, Beth exclaimed: "Dad, I remember everything."
She did. "It doesn't make any difference whether you take out the right hemisphere or the left hemisphere -- the patient remembers everything," says John Freeman, Beth's neurologist before and after her surgery and director of Hopkins' Pediatric Epilepsy Center. "God had the foresight to code all our memories bilaterally."
Another discovery relates to language. "Everybody knows language is coded in the left hemisphere," Freeman says. "The only thing is, that turns out to be wrong."
In fact, children who have the left hemisphere removed can understand speech immediately and gradually recover their ability to speak. So linguistic capability appears to be latent in the right hemisphere, which can take up the challenge if required.
A day after one boy's surgery, when Freeman asked about Mary Poppin's favorite word and prompted slowly with "supercalifragilisticexpiali..." the boy cut him off with "docious." The next day, he jumped in with "expialidocious." The third day, he could say the whole word.
The recovering brain, Freeman says, "is like an unmown field. The treasures are there under the grass." But it takes time and therapy to discover the pathways that lead to the treasures.
Sometimes, in the recovery room, a hemispherectomy patient will unconsciously stretch arms and hands. But the same patient cannot perform the same motion consciously with the weak hand.
The stretching is directed from the more primitive parts of the brain below the two huge hemispheres of the cerebral cortex. By contrast, deliberate, complex motion would have to be directed by the cortex, the locus of thinking and speech as well as complex motion. And if the left hemisphere is gone, it cannot issue instructions to the right hand.
"You can't use your hand if you don't know where it is," Freeman says. But gross or automatic motion of the right arm and leg, such as walking, can be controlled by the remaining parts of the brain.
What would explain Beth's short-term memory problems? Freeman's shrug reveals the limits of expert understanding.
"I don't know how much of it is a consequence of just trying to cram a whole lot into the one hemisphere she has left," Freeman says. Or, he says, it could be a result of her lengthy coma.
A Hopkins psychologist, Margaret B. Pulsifer, is traveling the country to test 58 hemispherectomy patients, whose ages now range from 15 months to 37 years. She has tested 40 so far and is scheduled to visit Beth this month.
She's found that left hemispherectomy patients have a little more trouble with language; right hemispherectomy patients have greater difficulty with visual memory, she says.
"But these kids carry on with almost-normal lives," she says. "It's amazing the brain and spirit are so resilient."
After the Ushers returned home in 1987, Kathy recalls trying to purge their lives of reminders of what Beth now would never do.
"She'd taken ballet lessons with her cousin," says Kathy, 43. "She'd wanted to be a dancer. After the surgery I remember coming home and throwing out a lot of things associated with ballet -- a music box with a dancer on top."
Gradually, Beth's parents came to appreciate what Beth was and could become and to forget whatever she was not.
Brian, previously a football coach at the University of Connecticut, switched to admissions work as Beth recovered to cut down on travel. Kathy devoted her evenings to walking Beth through her homework. Brian Jr., two years older than his sister, became her defender at school.
The family watched as Beth explored her physical possibilities, often on vacations on Martha's Vineyard: good at volleyball and badminton, terrific at table tennis; a natural swimmer; hopelessly unbalanced on a bike.
They watched as Beth refined her wit, from a little-girl trait to a kind of camouflage. "She says, 'I'm going to make you laugh, so you don't focus on my physical problems,' " Kathy says.
To a striking degree, her personality was unmistakably that of the healthy 5-year-old before the first seizure. But the elements were reshuffled, some fading, some emerging more prominently.
"Part of how she is, is who she is," says her father. "Part of it is the seizures and the surgery."
Compassion became a defining feature of her personality. "She was a very caring, loving, funny person before," her mother says. "She's even more so now, because she has less in her life absorbing her energy. She doesn't have the ballet, the soccer, the active social life. She's had great success with helping people."
There's the autistic 6-year-old ("bright red hair and bright blue eyes," Beth recalls) who never communicated until Beth worked with him at summer school, standing beside him as he drew letters on the blackboard and pronounced their names.
There are the school friends who call at night to report anxieties, slights, embarrassments. Beth talks with them through dinner, through favorite TV shows, refusing to hang up until she has made them laugh. At lunch, she makes a point of sitting with kids who are alone -- the new, the handicapped, the ostracized.
There's her science teacher, Edmund J. Smith, who struggled for weeks to get control of an unruly class. Beth handed him a note of encouragement one day last fall that kept him from giving up. "To me, she's been a godsend," he says.
And there are her parents, who find the tables turned as Beth counsels them about troubles at work. "She doesn't get bogged down in the garbage the rest of us do," says her mother, recalling how Beth helped her cope with a difficult colleague.
From time to time, a parent of a Rasmussen's child awaiting surgery visits the Ushers for advice and solace. Sometimes the visitors cannot quite disguise their disappointment at hearing of Beth's arduous therapy and seeing her permanent handicaps.
"It's tough when they come before surgery," says Brian Usher, 44. "They're looking for a magic, happy ending."
Yet the Ushers understand the other parents' feelings. They have themselves been on a journey.
"Before, I thought, I'm settling for this with Beth," Kathy says. "Now, I really do feel proud. I really love the individual Beth has become. We're a very, very close family, and I don't know if we would be like this if this hadn't happened."
Beth Usher moves independently through the corridors of E.O. Smith High School, greeting and being greeted, but never quite joining the knots of adolescents enthralled with themselves and their relationships.
Her first two years in high school, her brother and her cousin and close friend, Rebecca McCarthy, were there for support. In the cynical, conformist world of high school, they incorporated Beth into their circles of friends.
Now she's on her own, and her brother, a freshman at the University of Connecticut after spending a year as an AmeriCorps volunteer, worries about her.
"I think it's harder to be different when you're a junior in high school," he says. "There's a lot more pressure to act a certain way. Everybody wants to look cool, often at other people's expense."
And as if Beth had not some time ago exceeded a lifetime's allotment of pain, she lost her best friend in December 1995. Evie, Beth's duckpin bowling partner and confidante, was hit by a drunken driver while standing by her mother's broken-down car.
"Evie had the most beautiful hair, long and blond," Beth says. "We'd fix it up and laugh and laugh. She had such a good time at my house."
When Evie died, the emotional fence came down. For once, Beth cried. She spoke for hours to her parents and to Rebecca. She wrote a letter, which the priest read aloud at Evie's funeral.
She's given up bowling. "That was something I did with Evie," she explains. "I still think about her all the time."
Beth has other high school friends. Still, says Ursula Laak, Beth's special education teacher for three years, "I know she'd like to have more of a social life. She's 17, and people are talking about the junior prom."
Beth admits to feeling out of sync with the mainstream. She says she doesn't regret it. "I'm not really into gossip," she says. "I'm not into boys, or makeup, or lipstick, or dating and all that."
Yet in a recent poem, Beth expressed the edgy outcry one might expect from a 17-year-old with disabilities. It was a hint that her empathy has roots in her own, well-hidden pain:
Don't stare at me,
Stare into me.
See the real me --
Feel my loneliness and my hurt
I am me but could be you.
Writing is a place where Beth can escape -- from unwanted attention, even from her own stoicism. She writes in a journal daily -- "My life in review," she calls it. Occasionally she has attempted flights of fiction.
"I'd like to see Beth become a children's writer," says Jennifer Audette, 26, an aide in two of Beth's science classes. Audette calls her "very bright, very, very creative"; she was particularly impressed by a story Beth wrote last year about shrinking to the size of a cell and taking an anatomical journey through the human body. "It was amazing," says Audette.
Others see Beth teaching pre-school, or working with handicapped kids or with the elderly. Beth says she likes all those ideas. Maybe she'll marry someday, she says -- "if you find someone who'll marry me." She'll definitely adopt children. "Children no one else wants," she says.
In the meantime, Beth Usher moves through her life with hesitant grace, distilling strength from trouble, shaming the small-minded, reaching out to the lonely.
It is as if she asks: If I can laugh, after what I've been through, why can't you?
Pub Date: 4/13/97