He’s Navigating Rough Waters

Nick Scandone was arriving home in Fountain Valley from work 3 1/2 years ago when his cellphone rang. Scandone had been having trouble walking. His neurologist was calling.

“I’m pulling into my driveway and getting out of the car and he says, ‘Have you ever heard of a disease called ALS? Or Lou Gehrig’s disease?’

“And I said, ‘The only thing I’ve ever heard about it is the guy died before he was 40.’ ”

Nick was 36 then. He’ll turn 40 on March 4. ALS -- the amyotrophic lateral sclerosis that killed Gehrig and strikes 5,600 Americans each year -- has no cure, and 20% of those afflicted by it live more than five years.

But Scandone’s phone calls are getting better. One of the last he received before flying to Australia to sail next week in a world championship for disabled sailors was to tell him he had been selected the 2005 Rolex yachtsman of the year, the highest honor for American sailors, announced Wednesday. Sally Barkow of Nashotah, Wis., was voted Rolex yachtswoman of the year by the same panel of sailing reporters and editors.

Scandone joins past male recipients, including America’s Cup winners (Dennis Conner and Ted Turner), Olympic champions (most recently, the team of Paul Foerster and Kevin Burnham in 2004 and Mark Reynolds in 2000) and Volvo Ocean Race winners (Paul Cayard and John Kostecki). But none of the recipients since Buddy Melges -- both an Olympic gold medalist and America’s Cup winner -- won the first award in 1961 had to overcome what Scandone did.

Their arms and legs worked just fine. For the last couple of years, Scandone has been barely able to walk with a cane and plastic braces on his lower legs to keep his toes from dragging. Last seen, he was getting around in a wheelchair after twisting a knee, and his goal to sail in the 2008 Paralympics after the Olympic Games in China may seem a fragile dream.

But, by God, on Feb. 24 he’ll make it onto the stage at the New York Yacht Club to accept the Rolex award, if it’s the last thing he does.

“How do I even say it: I’m overwhelmed,” he said before leaving home for Perth, Australia, and the world championships of the International Federation for Disabled Sailing. “I knew I had a good season, but I didn’t think it would get this kind of recognition. This is something I never dreamed would happen. I’ve always admired many of the people who have received this award in the past, and to have my name included is something I will always be proud of and cherish for the rest of my life.”

Scandone did well in several events last year, but what clinched the honor was his victory in the 2.4 Metre Open World Championship on Elba Island in Italy in September -- Open, as in able or disabled. Most of the competitors -- 53 of the 87 -- were fully functional. Scandone and the other 33 were in the same boat.

The 2.4 Metre, one of three Paralympic classes for disabled sailors, is a single-handed sloop about 14 feet long. According to a class website, it “requires little exertion on the part of the skipper [and] allows disabled and able-bodied sailors to compete evenly, with the emphasis on sailing ability over physical attributes.”

On that level field, which included seven former world champions, Scandone won two of the seven races and was third in three others to finish 10 points in front of the next boat.

Other nominees for the Rolex award included Pete Melvin of Long Beach and Augie Diaz of Florida, world champions in the highly competitive A-Cat and Snipe classes, respectively. Scandone did not expect to win, and if he was to receive any support he wanted it to be on the merits of his achievements.

“I don’t want a sympathy vote,” he said.

He didn’t get one. Although the count was confidential, a few panelists who voted for him indicated they were swayed more by Scandone’s success driven by his courage and determination.

But that attitude took time to develop. Back to the phone call 3 1/2 years ago. Scandone’s wife of eight years, Mary Kate, remembers it well.

“Friday afternoon the neurologist called and he was telling Nick, and Nick was just shaking his head, like ‘I don’t understand ... here’s my wife. Just tell my wife.’ ”

“So I got on the phone and [the neurologist] said, in a monotone, ‘Here’s what my diagnosis is ... ‘ and I was just like, ‘You’ve got to be kidding me.’ We thought it was a back problem.

“You go online and [learn that life expectancy with] ALS is like 18 months to 2 1/2 years or the average person lives five years. He had been planning this fishing trip for a long time, so he said, ‘I’m going to go and have a great time,’ and three hours later he’s gone.”

First fishing, then denial.

“Not until six months later did I really end up sitting down with my wife and discussing it with some detail,” Scandone said. “At that time I was getting worse and came to grips with the fact that I may actually have this.”

He left his job as sales director for an Orange County company that makes wood-fired ovens so he could spend more time with Mary Kate, who works out of their home as director of recruiting for the Mimi’s restaurant chain.

“The first year I was in total shock,” she said. “I’d cry and think, we’re a young couple trying to have kids. I have dreams I’ve had to put on hold so he can pursue his. But when you’re married you make your vows and commit to that. When you love somebody that’s what you do.”

Their new life started when Scandone checked out the world of disabled sailing.

“I needed to find a boat that wasn’t very physical,” he said. “The 2.4 is like a mini-race car. You sit in it with your feet out in front of you, and all the lines are right in front of you. The most physical things you’re doing are with your hands.”

It’s ironic in a way.

“Without ALS,” Mary Kate said, “none of this would have happened. Winning the worlds was a lifetime dream, and I was just happy that Nick made that decision to pursue his dream.”

Even so, with weakness in his arms, he’s at a disadvantage in strong winds against other disabled sailors. Most are amputees or paraplegics with stable conditions -- “and very little upper-body disability,” Scandone said. “Some of these guys in wheelchairs are like studs up top.”

Scandone isn’t even sure he can continue sailing the 2.4 Metre indefinitely and may have to switch to a multi-crew boat before the next Paralympics.

“My only concern is that I’m sure not getting any stronger,” he said. “If anything, I’m slowly deteriorating, as is the nature of my disease. So I’m going down to Australia to see how I hold up in the windy conditions.

“I know I can compete with anybody as long as I have enough strength to do it. And it’s not all about the award. It’s about having a good time doing what you love. I hope to do that as much as I can.”