A story as big as the ocean
MORNING READ: Gold Medalist Nick Scandone sails against fate and time, and he doesn't waste a second complaining.
By MARCIA C. SMITH
The Orange County Register
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His skinny legs quit carrying his body three years ago. His slender stalks of arms hold just enough strength for embraces. And his lungs are failing, turning his voice into a whisper and making each unlabored breath special enough for gift wrap.

But last month, on the choppy sea near Qingdao, China, the U.S. Paralympic yachtsman from Fountain Valley settled confidently inside his adaptive SKUD-18 keelboat to sail his final race.

The moment possessed the rapturous feeling of a desperate dream coming true. So there, afloat on the ocean that has brought him peace, with his matchstick fingers wrapped around the skipper's tillers, Scandone wept.

For 10 minutes.

Scandone explains the tears by saying he had one thought before starting that regatta:

"I survived."

In 2002, Scandone, then 36, was diagnosed with Lou Gehrig's Disease, or ALS (amyotrophic lateral sclerosis), a degenerative neuromuscular disease that affects nerve cells in the brain and spinal cord. The condition preys on the body, stripping mobility and strength, limb by limb. Because there is neither treatment nor a cure, a diagnosis of ALS means that yesterday was better than today and tomorrow will be worse.

Few people live more than five years after the onset of the disease. Few survive beyond their 40th birthdays. Anything more is borrowed time.

Today, Scandone is 42 years, six months, 28 days old – and counting.

To squeeze the most life out of life, Scandone, a 1988 All-America and collegiate national champion sailor at UC Irvine, returned four years ago to the ocean to compete in two races.

One was against the world's seas and most skilled yachtsmen.

The other, he knows, will end with the most final of finishes.

•••

Six years ago, Scandone was healthy, happily married and sailing recreationally out of the Balboa Yacht Club. He and wife Mary Kate had just bought a home in Fountain Valley and were talking about starting a family.

Then, nagging back pain and a buckling knee led Scandone to a doctor. That, in turn, led to a diagnosis of ALS, and the knowledge that his body would continue to break down until he dies.

For 18 months he tried to forget, continuing to work and plan and splice together as much happiness as possible while suspending disbelief.

Until he couldn't.

First his legs stopped, so he got crutches. Then a wheelchair. Then a minivan with hand controls for gas and brake.

Next, ALS stole his strength. His weight dropped to less than 100 pounds.

But as the disease took a tighter hold, Scandone sought refuge on the sea, where he still could have the independence of motion.

Now, with ALS in its final stages, even speech is a strain. Scandone relies on his eyes – very much alive – and his smile to express much of what he communicates.

He smiles when he looks at Mary Kate, whose commitment to him has strengthened as his body has weakened. When Scandone left his job, marketing restaurant equipment, to sail full time, she paid their bills working as staff recruiter for Mimi's Café.

She moved furniture to give his wheelchair a clear path to the patio where her husband could sit in sunshine and appreciate the flowers in the garden. She helped him dress and eat. She tucked him in beside her at night.

She does everything. If only she could give him more time.

•••

"Sailing has been my dream for a long time," says Scandone, who just missed making the 1992 U.S. Olympic Team.

Returning to competitive sailing in 2005, he won the 2.4-meter Open World Championships in Elba, Italy. He couldn't walk, but he came out first in an 88-boat field that included 53 able-bodied sailors. The achievement won him U.S. Sailing's highest honor, the 2005 Rolex Yachtsman of the Year.

As long as he had strength, he sailed alone, setting his course and reading the winds and currents. He placed fifth at the 2006 IFDS Disabled Sailing World Championship and set out to compete for America at the 2008 Paralympics in Beijing.

"It was a long ways away, but deep down in my heart I knew he would make it," Mary Kate says. "Even if it was by a thread."

His disease was advanced enough in the fall of 2007 that Scandone switched to a two-person SKUD-18 to compete at the U.S. Paralympic Trials.

He was the skipper. His crew was Maureen McKinnon-Tucker, a Massachusetts woman who hasn't walked since breaking her back in a fall 13 years ago. They won the Trials, and the American delegation made Scandone the U.S. flag bearer for the Paralympics Opening Ceremonies.

Vince "Rock" Scandone served as Scandone's personal assistant at the Paralympics, carrying his younger brother to the dock and strapping him inside the helmsman's seat. Beneath the seat, Nick Scandone taped a picture of his first sailing teacher, his mother, Marilyn, who died two years ago.

"This was her dream too," Scandone says. "I took her along for the ride."

Mike Pinckney, the sailing coach at UC Irvine and Scandone's friend since childhood, coached the team. He trimmed the sails, rigged the boat and installed hand loops and a voice amplification box for what everyone knew would be Scandone's last race.

"Don't mess with the best because the best don't mess," Pinckney told Scandone every time the boat left the dock.

In Qingdao, Mary Kate Scandone watched the races from atop spectator wall. Her friends and family beside her, embracing her, she watched her husband stay alive long enough to live out a lifelong dream.

"This is what he wanted," she says, crying and smiling at the same time.

Scandone and McKinnon-Tucker competed in nine races, leading through the lulls, the shifts in wind and the ocean chop. They secured a gold medal before the 11th race, which they sailed anyway, "as a victory lap," Pinckney says.

On a quiet Thursday afternoon last month, more than 100 supporters – many of whom had followed Scandone's progress on his Web site (www.alove4sailing.com) – cheered as Mary Kate wheeled the sailor out of an elevator at John Wayne Airport. Scandone's homecoming included balloons and posters and a 30-foot banner that read "Congratulations Olympian Nick Scandone Gold Medalist China 2008."

A Paralympic gold medal hung limply from a hand raised as high as he could lift it. Scandone mouthed the word, "Wow!"

"You did it!" everyone yelled.

In the end, Nick Scandone won it all.

Contact the writer: masmith@ocregister.com



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