These teens won't let illness get them down

LIFE GOES ON

March 12, 1991|By Gerri Kobren

What 15-year-old Tim Boyd would really like to do is run a mile, in really good time.

It's not likely that he ever will: Tim was born with a serious heart defect that's been improved by surgery but not entirely corrected. According to his mother, Millie Boyd, he gets tired just walking from the Aquarium to the Science Center.

But there's a lot Tim can do and enjoy: He goes to school and Sunday School, he takes as much of gym class as he can, he plays guitar and baritone horn, goes to parties and hangs out with his friends.

It isn't always easy: Chronic illness is tough on a teen. It can limit activities, threaten life, cause physical deformity, and social embarrassment.

"It makes them dependent -- on medication, on the hospital and physicians, on their parents to get them to the doctor -- at a time when they're struggling with independence," says Dr. Marianne Felice, director of adolescent medicine at the University of Maryland Medical Center.

It can be awkward. "Most of our kids have bathroom stories," says Teri Jackson, R.N., nursing coordinator of pediatric gastroenterology and nutrition at the Johns Hopkins Children's Center. The youngsters she works with have bowel disease; they have painful cramps and bloody diarrhea and may have to run for the bathroom in the middle of class, during a movie, while out on a date.

It can leave them smaller, shorter, weaker than their peers. It can force them to think about death while everyone else is thinking about happy-ever-afters. It can make them feel different, when they want most to be the same as everybody else.

They can become angry, resentful, depressed, rebellious.

Or they can turn into really neat kids who enjoy the life they've got.

"At the positive end, when they're handling it well, they see it as a part of themselves, but not the major part of themselves; they perceive it as a piece they have to deal with, not the total self. They think, 'I am Johnny Jones and I have a bad heart,' " says psychologist Leon Rosenberg of the Johns Hopkins Children's Center.

"The youngster will always be somewhat regretful of things that interfere; he'll be unhappy about the way the illness interferes with A, B and C, but he'll still get pleasure from D, E and F. The kid has a good self concept; the chronic illness has some boundaries around it."

In fact, while chronically ill children generally need a lot of help from families, friends, doctors, nurses, and counselors, most of them grow up without a lot of emotional damage, according to Dr. Felice. "Adolescents are always resilient," she says. "They incorporate their problems as part of growing up, and with support, they do OK."

Here's how three are managing:

* Tim Boyd's heart, at birth, contained only two chambers instead the normal four; he also had no spleen, an important component of the immune system.

A series of operations, the most recent three years ago, has improved his cardiac function, but he still tires easily and needs a variety of drugs, including a diuretic to get rid of the fluid his heart isn't pumping out, and an antibiotic to protect him from infection.

"Usually, I'm reluctant to tell people about it; I'm uneasy that they might judge me differently, that they'll think I can't do things," says Tim, a 6-footer who looks like a kid who can do anything, according to his mother Millie Boyd.

"He works hard to be part of things," Mrs. Boyd says; and that means he's had to explain and negotiate in school -- in order to leave the classroom, unhassled, when the diuretic kicks in during first period class; in order to take gym and join the marching band, but drop out when he can't go on.

But some things are not negotiable: Last June, Tim found he could not go with his church group on a trip to Colorado. This winter, Tim found something else he could do: His older brother took him skiing in the lower altitude of the Poconos.

Yes, his parents were worried, his mother says. "But we've been told he can do anything he feels like doing. His body will let him know when he can't do it any more."

* Danielle Easom of Anne Arundel county was 14 when she came home from Ocean City with debilitating fatigue and the butterfly-shaped rash that is the classical symptom of systemic lupus erythematosis. An auto-immune disease that can attack skin, joints, internal organs and blood vessels, lupus is brought under control with steroid drugs; the high dose needed that first summer thinned her hair and ballooned her body and turned her first year of high school into a nightmare.

"I was teased unmercifully," says Danielle, now 18. "At first, I pulled into a shell. "I asked, 'Why me? Why is it happening to me?' I didn't want to talk to anybody, I pushed everybody away. . . I had to go into counseling."

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