Olympic dream sets sail despite setback
A Fountain Valley man qualifies for Paralympic Games in Beijing while battling Lou Gehrig's disease
November 22, 2007
Dana Parsons:


For Nick Scandone, it's always been about the race. Beating the competition. Beating the clock.

He thinks he was 7 or 8 the first time he raced a sailboat. Probably one of the Thursday night "Beer Can Regatta" events in Newport Harbor, he says, alongside his mother and stepfather, who were members of the Balboa Yacht Club.

He loved the water, the fresh air and figuring out how to play the wind. But what he really came to love over the years was the challenge, making it to the finish line before the other guy, raising his hand in victory and claiming the prize. By the time he graduated from UC Irvine in 1990, the school had won both the Dinghy National and Team Racing championships, and Scandone was an all-American.

In 1992, he went to the U.S. Olympic trials, hoping to make the sailing team in Barcelona, but didn't qualify. Directionless but needing to make a living, he relegated sailing to "weekend warrior" status and, at 26, bid adieu to his glory days.

This Thanksgiving week, at his home in Fountain Valley, the 41-year-old Scandone is not looking back but forward. And if he never had a sense before of life's endless potential for irony, he surely does now.

There's no soft way to say that Scandone has ALS, more commonly known as Lou Gehrig's disease. It's a rough one, attacking the nerve cells in the brain and spinal cord, leaving its more luckless victims either paralyzed or facing a steadily deteriorating life. There's no cure, and an estimated 6,000 Americans die of it every year.

Diagnosed in mid-2002 when he was 36, Scandone is wheelchair-bound and faced with diminishing strength that makes the simplest things -- like getting out of bed and getting dressed -- a test of will.

However, there's a better story to tell about Scandone, one I love so much I'm going to take my sweet time getting to the good stuff. Trust me, Scandone will pay off for you.

Early in 2002, after playing paint ball with some friends, he awakened so stiff from a nap that he could barely move. Thinking his back had betrayed him, he saw a chiropractor who eventually recommended he see a neurologist. A few months later, Scandone got the ALS diagnosis.

The symptoms had started kicking in. He was walking funny, like a chicken. His right hand was shrinking. He had leg cramps from time to time. He went online to read about ALS, but quit because it was too depressing. Early on, he now says with some wryness, he thought he was just low on potassium.

The worst part, he jokes, is that his brain still works. "It tells me I can do everything," he says. "Although you think you can still lift that 10-pound bag of dog food, there's not a chance I can. You just learn every day what you can and can't do. The frustrating part of the disease is that one day I can peel an orange and the next day I can't."

In late 2003, he quit his job. If time was running out, he figured, why not enjoy himself. "From what I'd read, most people last between two and five years," he says. "You've got to be somewhat realistic."

He and his wife, Mary Kate, had to learn, day by day, what he could and couldn't do. On one of those days, he heard about sailing for the disabled. The U.S. Sailing Assn. told him that something called the Paralympics was a big deal, that it was for disabled athletes and was held at the same site as the Summer Olympics.

In January 2004, Scandone went to Miami for his first event. Still able to race solo, he finished third. Two months later, he raced again. From then on, he says, he began thinking about the 2008 Games in Beijing.

The Paralympic trials were held last month in Newport, R.I. Now needing a second person in the boat with him, Scandone and veteran Massachusetts sailor Maureen McKinnon-Tucker won in the SKUD-18 category.

Their victory qualified them for the Paralympics competition September in Beijing.

How did that feel? I can't write it better than Scandone did last month on his website, ALove4Sailing.com: "Not much to say, but . . . IT'S OVER!!! IT'S OVER!!! IT'S OVER!!! We did it!!! WE ARE GOING TO CHINA!!!

The tears poured out that day, Scandone says, probably a combination of memories of what once was and what now could be. He thought about his mother and sister who had died in the past year. He thought about his wife and the extended network of family and friends and what his illness had imposed on them.

"It was like all the weight was lifted off my shoulders," he says, "and everything fell into place. This time, there was no disappointment. Just a lot of joy."

Scandone doesn't need me to bring up the issue hanging in the air: Will he still be alive 10 months from now?

"I haven't looked at it that I'm not going to get there," he says. "In my mind, I'm making it. I'm going to do what I can to help me make it. What that is, I'm not exactly sure. It's just getting out there [practicing] on a consistent basis so I know I can do it for a week next September when all the chips are on the table."

Nor does he need me to recite the ironies: the failed bid to make the Olympics in '92, then a devastating illness that, remarkably, has led him to qualify for international competition in 2008.

"I always thought I was a very good sailor when I was trying for the Olympics the first time around," he says. "But I never felt I approached it with enough maturity. This time around, I'm a little older and it's a little different situation and things meant a little bit more to me."

Scandone knows others will see him as inspiring, but we share a hearty laugh over his refusal to play the "hero" card. When I ask him to wax philosophical about the last few years, he says, "I wish I had a lot of wisdom" and then yells to Mary Kate in the next room: "Hey, Mary, any lessons?"

She laughs, too, and says they've just tried to do the best they can. It's not in his nature to give up, he says. They both say without embarrassment that pursuing his Paralympic dream has probably extended Nick's life.

"I'm not trying to be a poster child, saying, 'Look what I've done,' " Scandone says. "If it works out that way for people, I'm all for it and for helping the ALS Society. But I'm really just doing this because I enjoy doing it." I figured we'd end our conversation with Nick just saying he was happy to be going to Beijing, that winning a medal would be gravy. Foolish of me. I'd forgotten already that ALS attacks your muscles, not your soul.

"Actually, finishing second would be a disappointment," he says, and I apologize for laughing at what struck me as his ultimate warrior battle cry.

"I'm there to win," he says. "That's what it's all about to me."

The man wants no sympathy, and I will give him none. I promised him I wouldn't lionize him.

He doesn't need canonizing. He's got other things to think about. He's got to stay sharp. Got to stay strong for as long as he can. He's got a boat to race.

Dana Parsons' column appears Tuesdays, Thursdays and Saturdays. He can be reached at (714) 966-7821 or at dana.parsons@latimes.com. An archive of his recent columns is at www.latimes.com/parsons.

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