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Scott Johnson: A Life Redefined

A huge tribal tattoo sweeps over his right shoulder, cascading into his torso and back. On his legs, a shark tattoo adorns one calf, an Ironman logo the other.

Yet somehow the scars stand out more.

Two line the bottom of his pectorals. A few more his ribs. Thenthere’s the big one, the gash through his stomach that looks like a Caesarian gone horror movie.

“All my tattoos have meaning,” says Leland resident Scott Johnson, pulling his shirt back down.

A Maori — a native New Zealander — designed the big one on his shoulder. The shark tattoo, an imaginary hybrid, combines two real sharks tattooed on Johnson’s two best friends. The Ironman tattoo coincides fittingly with every scar, both the intentional and the necessary.

The story has been well-chronicled in years now long past by myriad media, print and television alike. Now however, as Johnson hits the tail end of his triathlon career, his story is worth sharing one more time.

The Early Years

Scott Johnson was diagnose with cystic fibrosis (CF) at three months old. He did OK with it as he grew up. He loved all sports and was an active kid. (See also: “hyper.”)

Most CF victims are expected to live roughly 30 years. “I knew from the start that I had an expiration date,” Johnson says. “We didn’t know the date, but it wasn’t going to be a full life. Which is hard because when you’re growing up (with CF), you don’t make future plans… You live by the seat of your pants and try not to get in trouble with the police.”

Around age 20, as he’d long dreaded, things began going bad. For the next nine years, Johnson visited the hospital at least twice a year. All his sports were gone, stolen by the disease. All except surfing, but even then, the disease taunted him. Johnson had to stop when waves got too high, knowing he couldn’t hold his breath long enough to survive what would be, for anyone with healthy lungs, an ordinary fall into head-high water.

“It sucks,” he says. “It’s like having a dream you know you could have, but can’t quite achieve obtain.” Many dream of becoming the best athlete in their sport. Johnson just dreamed of playing.

Then, when Johnson was 29, toward the end of the 2001 summer, it happened. The disease went for it all. It ravaged him to 95 pounds and battered his respiratory system to failure. Only a double lungtransplant could keep him from dying.

Johnson’s expiration date seemed clear.

Dreaming Big

Then, while lying in a hospital bed, in a rare moment, Johnson thought of the future. He made a list, naming things to do before he died — ways to live, like finishing a triathlon, surfing all over the world, climbing mountains and scuba diving in a shark cage with great whites surrounding him.

The call came in early September. They’d found some lungs. Somehow, around the chaos wrought by 9/11, the lungs were flown in on September 15. Doctors operated immediately – that’s where he got the scars on his chest.

“You’re lucky,” doctors later told him, as he took the new lungs remarkably well. “You wouldn’t have lived the rest of the week.”

“It’s one thing,” Johnson says, “to get in a car accident and say, ‘Whoa, I almost died right then.’ It’s another thing when a doctor’s staring you in the face, telling you that.”

After finishing therapy, Johnson promptly experienced a freak accident: his bowel ruptured, puncturing his colon.

That surgery is why his stomach looks like it does. Again, doctors told him he was lucky, that maybe three people have survived a colon perforation after transplant surgery.

“Just stop telling me that stuff,” Johnson told them then. He was ready to quit thinking about what could happen and begin focusing on what he wanted to happen. As soon as he could, for the first time in a year, he went surfing. Then he started training for a triathlon.

Since then, Johnson has finished 35 short-course triathlons, a half-dozen half marathons, one marathon and raced in six half-Ironmans and five Ironmans.

“I didn’t realize how addictive this stuff is,” he says.

Johnson stalled on triathlons for awhile, putting the rest of the list on hold while giving in to the addiction. “But I think it’s a good addiction,” he adds. His doctors agree. They’ve told him they wished everyone who had a double lung transplant would do at least half of what he does.

In New Zealand, he became the world’s first double transplant patient to try an Ironman. That’s when and why he got that tattoo. That’s when he started marking himself, claiming back his body, hi life, from the disease. That’s when he started inspiring people.

The breadth of Scott Johnson’s reach can’t be covered in a 1,300-word story. Maybe not a 13,000-wordstory. Just google him – you’ll findeverything.

Also, his impact went as deep as it had reached wide. Had he never begun training, he may have never met Leanne.

A Training Partner

They were introduced by “Match Words” at Match.com, which connects people with words in their profiles that match words in others’. The couple’s word: “running.”

They met in June 2006. Johnson showed her, a former competitive runner, how to swim well and convinced her to try a sprint triathlon, which she raced in Chapel Hill in August 2006. In November, she watched Johnson in Florida, where he became the world’s first double lung transplant recipient to finish an Ironman. There, she caught his passion. She’d only raced the one sprint, but now she wanted to try more.

There’s a term in triathlon: Iron Widow. It’s self-explanatory. “We’re lucky because we did all our training together,” says Leanne.

“You train for Ironman, that’s your life for a year,” says Johnson.

And so something the disease always kept from Johnson – endurance sports – became whatgave him his future bride. His future, period.

The opposites-attract cliché works for them a couple ways: Leanne’s best leg, running, is Johnson’s worst, and his best, swimming, is her worst A disease nearly killed him; she’s a nurse.

He moved from Wilmington to Leland to live with her, and discovered he loved Leland life. “It’s not as fast-paced as Wilmington,” he says. “I really like knowing my neighbors. And there’s not as much traffic, and it…has a better feelto it than Wilmington did for me.”

In July 2007, Johnson raced in Ironman Hawaii, the Super Bowl of triathlon, on national television. Three days later, he married Leanne there. Last October they raced Ironman Arizona together, and later this year, they’ll race the New York City Marathon together.

A Dream Realized

Triathlon redefined Johnson’s life medically and personally.

It takes roughly two years for transplanted lungs to fully expand. Johnson’s are now above the normal, healthy person’s lungs’ capacity. His bone density has doubled. His immune system, though medically suppressed so it doesn’t reject the lungs, is stronger than normal, too.

Johnson’s also realized a dream. He became an athlete again. He’s 38 years old and still going strong, defying the disease on a daily basis. He’s planning to compete in the Transplant Olympics this summer. He’s married a beautiful girl who trains with him. Perhaps most unbelievable of all, he inspires kids. He never imagined himself a role model,considering what he was as a kid. Yet, “Every time I go out for a long ride or long run or something like that,” he says, “I think back to the time I spent in the hospital and the time I would have given anything to be somewhere other than there.”

He imagines those to whom the disease has moved on. He’d carry their burden if he could and it’s certainly left its scars. “I think of the kids in there right now in the same situation,” he says. “That gives me the oomph to get out there and do what I need to do.”

Johnson is a small guy, standing maybe 5 feet 7 inches talland weighing maybe 145 pounds. But his life is bigger than he ever thought it would be, and like the scar slicing through his stomach or the tattoo claiming his shoulder, his legacy, and its ability to inspire hope very well may last forever.

As for Ironman, Johnson’s final one that he knows of will be next year’s Ironman Arizona. He’s moving down the list.

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