Like scores of runners everywhere, when Joshua Skampo gets home from work, he pulls on his running shoes and heads out into the dusk.
But unlike most runners, Joshua runs for his life. He has cystic fibrosis (CF), a strength-sapping disease that makes it hard to breathe. Thick mucus accumulates in various organs, including the lungs, pancreas, and intestines.
Running makes him feel better, he says. And he enjoys it.
“Every run is more beneficial than not running,” the 36-year-old engineer said in a phone interview with CF News Today from his home in Monroe, Michigan. “The days I don’t run, I notice a difference. I’m more plugged up, producing more mucus.”
He usually logs around 45 miles weekly, including weekends. When he’s training for an event, that number can reach 75. And these days, he is training — for none other than the Boston Marathon, 26.219 storied miles from the Massachusetts town of Hopkinton to Boston’s Copley Square.
When Skampo hits that pavement April 15, it’ll be his fourth “Boston,” a monumental achievement even for healthy runners. Established in 1897, the event, for many, is the ultimate U.S. marathon. For one thing, a runner must first qualify by finishing another marathon under a certain time, determined by age and gender, during the year leading up to registration.
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Naturally, Skampo’s first Boston stands out for him the most. It was in 2013, two years after surgery for bleeding lungs. He knows by heart the number emblazoned across his shirt: 4673. His finish time, too, he recalls immediately: three hours, six minutes, and nine seconds.
Participating in the race had been a goal since high school, where he was on the track and cross-country teams. Then in 2012, he hit the finish line in a Charlevoix, Michigan, marathon in three hours, four minutes, and 12 seconds, finally qualifying for the prestigious race, aching legs and all.
His dream had come true.
“I was pretty excited,” he said of his first Boston experience. “You’re a little more excited than for a normal one. I finished a little slower because I tired out at the end.”
For his efforts, Skampo received a finisher medal and “a real nice shirt.” His experience was marred, though, by tragedy: 2013 was also the year of the Boston bombing in which three people were killed, and hundreds were injured.
“I had already called my family to let them know I was fine and had finished, then my dad and my wife and I heard explosions,” Skampo said quietly. “We kind of just went back to the hotel. Everyone was just shocked.”
He was in his best shape for the 2015 Boston Marathon, but because it was so cold, his body seized up, he said. He finished by walking. Weather was a factor at last year’s marathon, too. “I did 17.5 miles, then I had to stop. I was frozen. It was like wearing wet clothes. It was a rough day, but I tried.”
Because Skampo, who weighs 114 pounds, is increasingly intolerant of cold weather, he’s starting to use a treadmill more, at least during chillier months. Low temperatures don’t seem to directly affect lung function, however.
“There are days when I can’t breathe and it’s nice out, and days I can breathe well, and it’s terrible out,” said Skampo, who sometimes runs the 4 miles to and from work. “I just hate being cold.”
He doesn’t recall being told he had CF. Growing up in Adrian, Michigan, he just remembers seeing doctors a lot, and taking pills and treatments.
He began running in middle school. His parents encouraged him; his father had been a runner, and sometimes they ran together. He joined the school track team and even tried his hand at softball.
“I enjoyed running, and I knew it would help me,” said Skampo, who has an older sister in Arizona. “Would I have ever discovered running if I didn’t have CF? I don’t know. I do know that if I didn’t have the need to run to clear my lungs, it would’ve been easy to quit. I realized it was important, but I also started liking it.”
Nowadays, Skampo, who doesn’t have a trainer, frequently runs with a local group. Some members are unaware that he has CF.
“A few were surprised,” said Skampo, whose lung capacity hovers between 60–70 percent. “Some of them, when I’m coughing like crazy, wonder what the heck’s going on. There have been a few races where people have made comments. When I tell them, some know what CF is, and some don’t.”
So far, he’s run nine marathons — his first was in 2001 — and several half-marathons, including the 2014 Rock CF in which he placed fourth in a field of an estimated 800 to 900 runners. He’s also finished a 50K race — roughly 31 miles. And he coaches a K-12 cross-country club, while working with middle school and high school-age runners.
With the blessing of his doctors, Skampo does as much as he can. At times, CF can seem unyielding. Still, he said all CF patients should, if they’re able, participate in some activity that gets the mucus moving. (Skampo talks more about CF and running on a Facebook video.)
“It’s like having pneumonia all the time,” he said. “You’re always coughing up stuff, always a little wheezy. You’re sick. CF affects everything in your body, all your organs. Everything is harder because lung function is worse.”
After he runs, Skampo typically has some kind of treatment, be it percussive massage therapy (a technique that provides concentrated, rapid, short-duration pulses deep into the tissues of the body, which helps with circulation and muscle recovery), or using a pulsating vest to help clear the airway. He also has other breathing treatments, and hopes a change in medications late last year will help him feel better.
Through it all, his ardor for running remains undimmed. Right now he’s focused on the next Boston, which he said could be his last, regardless of how he finishes. He’s hoping for better weather this time.
”It’s still exciting, and it’s always a privilege,” he said. “Those spots are hard to come by. The main reason I’m running this year is to avenge last year. That really, really bothered me.”
Before summer, he hopes to start training for ultra running, races that are longer than traditional marathons. He has his sights set on a 50-mile one in August.
Skampo said he has joined a few Facebook groups for those with CF and similar disorders in the past few years. He’s met several people who have also completed marathons or undertaken long bike races. He knows these feats are unusual. But for him, they’re also necessary.
“I recognize that it’s extraordinary,” he said. “But having CF, you have to take a lot of treatments and medications. And you understand why they are important. In that same way, you understand why training is important. It’s just as easy to slack off breathing treatments as it is running. But those of us who do these things have a greater sense of why they’re important.”