NEWPORT BEACH — He referred to ALS not as amyotrophic lateral sclerosis, but as "A Love for Sailing."
It was Nick Scandone's way of turning his death sentence from Lou Gehrig's disease into a positive, which he did time and again. He won a gold medal in sailing at the 2008 Paralympics games in Beijing, just months before he died on Jan. 2, 2009.
Tuesday night at 6:30, the Newport Harbor Nautical Museum will unveil an exhibit honoring Scandone's life, where Gary Jobson, a world-famous yachtsman and America's Cup winner, will be on hand to say a few words about Scandone.
"This is a celebration of his life; it's not a memorial," said Nick's widow, Mary Kate Scandone, 48, who was by his side when he died. His last words to her — just before she removed the oxygen mask from his face — were "I love you."
He didn't want to be put on life support. Scandone lived life boldly, both before and after the diagnosis, which came in July 2002, after he complained of back pain and began having trouble walking.
And yet in the face of such bad news, he kept pushing forward, Mary Kate said, mostly because he was an athlete at heart, whether golfing, playing baseball, surfing or sailing.
"He was pretty much golden, whatever he touched athletically," said Felipe Bascope, the exhibit's curator.
With the help of Dean Andrews, the exhibit's designer, the pair have been logging long hours to get the show ready. At one point, Andrews even took to taking cat naps in his car instead of heading back to his home in Laguna Beach.
In assembling the endless amounts of awards and trophies, and in conducting volumes of interviews with family members, Bascope said he's gotten to know Nick incredibly well — the proof of which will be on display inside the tiny three-room exhibit.
If you step back and look closely, it looks a lot like a sailboat.
Look skyward, away from the white sails that separate the tiny rooms, and you will see some of Nick's greatest quotations and anecdotes, including his mother's now-famous utterance to him as a child: "Nick, do you want to go to summer school or sailing school?"
He chose sailing school, of course.
Other great insights inside the exhibit — alongside his gold medal, his congratulatory letter from former President George W. Bush and his childhood photographs — will include:
"Before I was diagnosed, I figured I had plenty of time to do things in life. I always thought time was on my side. I guess I took life for granted. Now, I look at things like, 'This may be the last time I get to do this,' so I appreciate things more. I focus more on the present and try not to worry too much about the future."
Or, "Although you think you can 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."
Or, "Well, I just want everyone to understand that despite whatever limitations you may have, if you put your mind to it you can go out and enjoy yourself, and maybe get a gold medal. It's all about how much you want it.
"Nick had wanted the gold medal so much, and in fact, had believed it so much, was going to win it so much that even when he could barely lift his hand, he managed to scrawl out on a piece of paper to Mary Kate that he was going to win the gold medal."
That too can be seen on the walls of the exhibit along with the Rolex Yachtsman of the Year Award in 2005 and other championship cups, including 2004-05 Independence Cup Champion in Chicago, the U.S. Multihull Championship, Alter Cup, and the 2005 Class World Champion in Elba, Italy.
Bear in mind, Bascope notes, that all of these trophies were won while he was afflicted with the disease, which renders muscles weak, eventually eliminating the ability to breathe.
Nick, of course, by all rights, outlived the disease by several years, said Mary Kate.
"He would be laughing, and he just wouldn't believe it," she said. "I think he'll be smiling in heaven, and he'd be very humble and very proud."
Tickets at the door are $25 per person. All proceeds will benefit the museum's educational programs.
Additional levels of support are: cruisers, $100 per couple; racers, $250 per couple; and Olympians, $500 per couple.