Collegian tries to live like an average guy

He makes the best of the cards he's been dealt by genetic disorder

By Nora Villagrán
San Jose Mercury News
Nov. 10, 2005

There is elegance in the way Jim Konijn lives life.

"Take it one day at a time and be a positive influence in someone else's day," says Konijn, 20, a Morgan Hill resident who writes poetry and studies martial arts.

"There are pain-in-the-butt people who are mean to others, but I choose to be the one you can go to," says Konijn, who attends West Valley College in Saratoga and works at the campus bookstore. "I'm not Superman, but I'm there to help."

What makes all of this remarkable is the very thing he didn't choose.

Konijn - who at age 4 knew only 20 words - was born with Prader-Willi Syndrome, a complex genetic disorder.

PW, he says, is associated with developmental learning problems, severe sleep apnea, asthma and poor muscle tone. "Slow metabolism and, in some cases, a low IQ,'' he adds.

Among PW's challenges is an insatiable appetite that can lead to life-threatening obesity and a shortened lifespan. Some families must keep food out of reach by locking the refrigerator and kitchen cabinets.

"The mind doesn't fully connect with the stomach, so you don't know if you're full," says Konijn, who is more than 6 feet tall and weighs about 300 pounds. "Some people are big because they're depressed and they eat to be happy - or you can be big because of something you're born with, like me."

He sums up with: "Here's the deck of cards; make the best of the hand you've been dealt."

That Konijn is doing just that is celebrated by his mother, Laurie Robinson, 56, who calls him her "Gentle Giant."

Robinson, who works across from campus at the Saratoga Recreation Department, says, "People consider Jim someone they can talk to."

Konijn was among those honored recently with a Challenge Award by Via Services in Santa Clara, a private non-profit organization that helps people with special needs and disabilities achieve self-sufficiency through its innovative services and programs.

"A Challenge Award is given to someone who exemplifies growth and spirit and is a model for others," says Kay Walker, Via's president and CEO. "James is certainly that."

Konijn began attending Via's Camp Costanoan 12 years ago, and he's now a leader and role model for the younger kids.

The 13-acre camp, which serves people with physical and developmental disabilities, is located in Stevens Creek County Park in the foothills of the Santa Cruz Mountains. There are swimming pools, sleeping lodges, a horse corral, petting zoo, arts and crafts, a dining lodge, sports court, camping sites and drama and music programs.

"It's rough out there in the world," he says. "Camp helps you learn things step-by-step. At camp, you're in a totally different environment, where you can test your needs and limitations. You're treated like you're an average person, and I love that."

Konijn has faced average-person difficulties, such as the divorce of his parents and the death of a beloved friend.

"I knew Edmond since before preschool - we were brothers, yin and yang," he says. "He was 19 and got hit by a car in May. I didn't see it, but I heard it. I ran and checked his pulse. I put my forehead on his forehead. We were going to move into the same neighborhood when we had families of our own. Now he's gone."

Konijn has also faced difficulties unknown by the average person.

"The doctors said I couldn't work around food," he says. "I said, 'Let me try,' and I volunteered to work in the high school cafeteria for three years straight."

His atypical appearance was another "barrier I wanted to break," he says. "When I was a seventh-grader, people at school had never seen a big person like me before, and some guys picked fights. I've taken karate and tae kwan do, which have helped me develop common sense: Don't beat up the other guy, even if he wants to beat up you."

In Konijn's case, his desire to be "like everybody else," as he puts it, and to "go beyond the word 'diagnosed' " is a positive paradox.

Because he chooses to "prove the doctors wrong," Konijn has developed a notion of life as possibility and an eloquence in speaking his heart that he might never have developed if he were an average guy.

"I've had thoughts of suicide," he says. "But then I think I wouldn't have such a great family and friends that keep me strong. Then I also think: Bad things are going to happen - it's our reaction to them that makes the difference.

"You can be an optimist or a pessimist. The advantage of being an optimist is that you'll give people hope. The doctors said I might pass away at 18, so I'm already pushing past the barriers. I want to see how far I can take it.

"Let's see what happens when one person from a special education environment goes out into the world," says Konijn, who'd like to transfer to San Jose State University and become a teacher, perhaps in poetry.

"Let's see what I can do," he adds. "Let's see if I can prove that no matter what condition you're in, there's light coming out of the dark."