In Their Shoes
Brunstrom's method may seem harsh to some, but Stephanie feels a special connection with her coach. "She can be a little annoying," says the sixth grader. "But it's easier to listen to her, because she has the same thing I do." Like her young charge, Brunstrom has cerebral palsy, an incurable motor disorder that affects half a million Americans. The result of a brain injury occurring at or before birth or in early childhood, CP causes a loss of muscle control and can lead to speech problems, learning disabilities, spasms and seizures.
Brunstrom herself often uses a cane and walks with a pronounced limp. But as founder and director of the hospital's Pediatric Neurology Cerebral Palsy Center, one of the most comprehensive facilities of its kind nationwide, she has provided more than 600 youngsters with a special kind of hope. Not only has she bolstered their bodies with innovative physical therapy, she has given them the emotional strength to defy the low expectations people often have of them. "What makes the clinic unique is who Jan is as a person," says Dr. Bill Mobley, chairman of the Stanford University Medical School's neurology department, who is well-acquainted with her work. "She is a powerful person, and she tries to empower patients."
Brunstrom developed that strong will by proving herself to doubters. "There have been people all my life who thought I couldn't do things," says the assistant professor of neurology at St. Louis's Washington University School of Medicine, who is also the mother of a healthy 8-year-old son. "I wish we had a cure for CP. But in the meantime we have to use our resources so that these kids can have a chance, like I had a chance."
Brunstrom credits her own parents with fostering the potential that others might not have seen. A native of Seattle, she was the second of four children of civil engineer Gerald Brunstrom, now 72, and his wife, Betty Elgin, also 72, a special-ed teacher. Born three months prematurely at just 3 lbs. 2 oz., Jan at first was given little chance of survival. "For a long time it was really nip and tuck," recalls Betty. Having already lost three premature babies, she found hospital visits unbearable: "I couldn't keep looking at her and thinking she might die."
The newborn pulled through, but soon there were signs of other problems. "She didn't crawl or roll over like the other kids," says Gerald, whose marriage to Betty ended when Jan was 19. Still, doctors said, " 'Oh, she's just a little stiff. She'll be okay,' " recalls Betty. It wasn't until Gerald's job took the Brunstroms to London in 1964 that Jan, then a year old, was diagnosed. During an office visit for a minor illness, a doctor took one look at the baby, noted the stiffness in her movements and said to Betty, "Do you know you have a cerebral-palsy child on your lap?"
The following year, when the family followed Gerald to Australia for a five-year stay, Jan began receiving regular physical therapy for the first time. By age 3 she was walking, but "it was always tenuous," she says. "It was kind of a joke when I was 10 or 11 that if the wind was blowing hard enough, I couldn't stand up." Like many parents of CP children, Betty worried that her daughter might be mentally as well as physically disabled. But at 4, Jan came home from school one day and read two books aloud to her astonished mother. Shortly after, a routine IQ test put Jan in the genius category. Even so, back in Seattle in 1969, Brunstrom's parents had to battle to get her mainstreamed in public school. "There was no such thing as inclusion," says Betty. Adds Jan: "If you had a disability, you were grouped with the retarded kids."
For the most part, Brunstrom escaped that fate. But her parents used tough love to prepare her for what they feared might lie ahead. Whenever Jan fell down, "I would have her pick herself up," says Betty. "That was the hardest part, not to pick her up. I got a lot of caustic comments from people, but I thought, 'Sometime she'll have to pick herself up and I won't be there.' " Later enrolled in a private school for the gifted, Jan endured the nickname Eiffel Tower for the rubber-and-metal braces that she wore. The ostracism only worsened when she became a teenager. As a disabled person, "you're afraid that nobody's ever going to love you," says Jan. "I used to get asked out all the time as long as I was sitting down. Then when you get up, you see a look of pure horror."
Despite those cruelties, Brunstrom graduated at 16 as valedictorian of her high school class, attended Virginia Commonwealth University School of Medicine and went on to fulfill her dream of becoming a doctor. "I never wanted to be anything else," she says. It was as a second-year resident at St. Louis Children's Hospital that she met kidney specialist Dr. Brent Miller, now 38, whom she married in 1990. "He thought I was a cute little dietitian," she recalls. "And I said, 'I'm your renal consult, pal, and I outrank you.' I don't think he knew what he was getting into." Today Miller confirms Brunstrom's memory of their first encounter ("I turned beet red"), but dismisses the notion that her disability was in any way off-putting: "Jan's a beautiful woman. She worries about her limp because people see that part of her first. But if you're with her for more than five minutes, all of that just melts away."
Three years ago, after spending most of a decade specializing in general pediatric neurology, Brunstrom was persuaded by colleagues to found a CP clinic. She started with a staff of two and within six months was treating 100 patients. The clinic now has 10 doctors, nurses and therapists and to date has treated some 600 kids, up to age 20, from around the country. Patients, ordinarily scheduled for twice-yearly office visits, work toward the goal of gaining the greatest possible independence, whether by walking or living on their own.
Although Brunstrom uses traditional therapies (including muscle relaxants to ease spasms) in her treatment, she has also devised innovative therapies of her own. A late-blooming athlete who swims and practices martial arts, she borrows much of her technique from sports medicine. "I insist that all my patients do some kind of aerobic fitness, not just physical therapy," she says. "The reason these kids don't have a lot of energy is that they don't move." Along with strength training, Brunstrom offers the first martial-arts program in the country for CP kids. "I'd like to have a black belt in three or four years," says Will Jenkins, 23, one of her 60 students.
Brunstrom and her staff help patients break out of their CP-induced isolation as well, providing speech therapy, instruction in computerized communications devices—and a dazzling role model. "This is what I was put on earth to do," she says. Still, she adds, "the day we stumble onto a cure for cerebral palsy, I'll be happy to be out of a job."
Kelly Williams in St. Louis
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