A native of Peru, Robert Carcelen learned to cross-country ski at Snoqualmie Pass, and became a two-time Olympian. Now he wants to ski in 2022, despite a grim diagnosis.
When Roberto Carcelen moved from Peru to Seattle 15 years ago, he had never been on skis. It was love that brought him north. He and his Seattleite wife, Kate, met online and never looked back. It was Kate who took him to Snoqualmie Pass one day and set him loose on the cross-country trails. A few years later, he became the first Peruvian to qualify for the Olympic Winter Games.
He competed in Vancouver (2010) and Sochi (2014) in the 15-kilometer cross-country race (classic once and freestyle once), compiling a strange, compelling Olympics resume without ever having so much as sniffed the podium. Now he’s coming out of retirement, planning to try to qualify again. This time it’s more important, more improbable, more personal than his earlier efforts.
Carcelen has Parkinson’s disease and wants to show the world what’s possible.
We’ve kept in touch through the years after meeting as part of my Olympics coverage for KING5, Seattle’s NBC affiliate. He called me a few months ago to tell me he was having increasingly bad hand tremors and increasing stiffness in his right side. The formal Parkinson’s diagnosis hadn’t come yet but he was pretty sure he knew what was happening.
I started to commiserate over the phone and tell him how sorry I was. He would have none of it.
“It’s a new challenge,” he said, “I look at it as a great opportunity.”
Of course. That’s who Roberto Carcelen is and that’s what he does; he turns an implacable and irreversible neuro-degenerative disease into an opportunity to educate and inspire others.
He, Kate and their 11-year-old daughter, Frankie, split time between New York City and Florida. They moved east to give Roberto’s philanthropic work a higher profile and to show Frankie more of the world.
When I visited recently on a moist spring day, Carcelen was in Central Park on roller skis, gliding along with the cyclists and roller-skaters, starting the long climb back to what he hopes will be Olympics-level fitness and a shot at the 2022 Winter Games in Beijing.
At first glance it looks effortless, a flowing, skating, right-left ripple of motion against the big-city backdrop. But the others out for a casual workout don’t know is how hard it is for him, that his right side isn’t as flexible as it once was, and his right hand is vibrating around his pole.
He used to train incessantly, somehow squeezing in workouts with his family life and a tech career as an international consultant on online branding and marketing. He’ll have to do a similar juggling act now but figures he’ll only be able to handle three or four half-hour sessions a week, running and roller-skiing. He has a very difficult road ahead. He knows it.
“Chances are slim, pretty slim,” he said flatly.
He’s well-known in Peru as that country’s pioneering Winter Olympian, but his native country has a long history of Summer Olympics participation, dating back to the Paris Games of 1900 when Carlos de Candamo competed in fencing. The country can point proudly to four Summer Games medals, all in in shooting and volleyball.
The diagnosis came in April, confirmation of something he suspected for several years, a name for what was causing the creeping debilitation he first noticed in a trembling right foot.
“Six months later the tremor was more noticeable and severe,” he said. “Then things started escalating, from my leg up to my arm. And it’s been progressively getting worse.”
That’s what Parkinson’s does; it gets worse. That’s one of the few things modern medicine can tell you about it with certainty. The cause is unknown. While symptoms can be mitigated with drugs, there is no cure for the unpredictable change in dopamine levels in the brain.
That change affects the central nervous system, causing problems with movement and balance. PD can cause depression, anxiety attacks and disruption of sleep patterns. It’s not fatal in and of itself, but in later stages can lead to serious problems with breathing and swallowing. For those affected, life expectancy is lower than normal.
Sinemet is the drug most commonly prescribed for people like Carcelen. It can lessen the tremors and slow the advance of symptoms. But against the advice of his current doctor, Carcelen is not taking it. He doesn’t like the possible side effects and doesn’t like traditional medicine’s focus on treating symptoms.
Instead he’ll fight the slow degeneration of his body without prescription drugs and will work to lessen stress and adapt his day-to-day life to fit his changing capabilities. A serious training regimen should help, too; in most cases physical exercise can slow down the disease’s progression.
“I’ve always been a guy of holistic approaches to medicine,” he said. “This time around I’m just sticking to my beliefs, doing lifestyle changes, diet, learning about alternative medicine.”
The Carcelen household is greeting it all with a collective shrug, trying to make it just another part of life, just the way things are, a new challenge.
“You deal with the cards that are dealt you in the best way you can,” says Kate Carcelen. “I mean, what else can you do? You can’t just sit around and think, ‘Woe is me.’ There are people in this world that have a lot more challenging aspects to their lives. This is just a blip, in a way.”
Frankie says she doesn’t want to worry about it all the time, even though she understands her father’s shaking will never go away and never get better. She said she didn’t even know Parkinson’s “was a thing.”
According to the non-profit Parkinson’s Foundation, 60,000 people in the U.S. will be diagnosed this year. More than 10 million worldwide struggle with the disease. Only about four percent of those diagnosed are Carcelen’s age or younger.
In Parkinson’s terms, he’s an outlier. But then he’s been an outlier in many ways in his life and Olympics skiing career.
His competitive record reads like an epic failure. The simple numbers show him as an outclassed, over-aged rookie chasing an impossible dream in full view of the sporting world; “Eddie the Eagle” on XC skis perhaps, or another Jamaica bobsled “Cool Runnings” feel-good, winter-sports story from somewhere near the equator.
The truth behind the numbers tells a different story. He fell hard in his Vancouver race in 2010 and finished next to last. Knowing he was better than that, and wanting to prove it to his country and the world, he trained hard for another four years and qualified for Sochi. He was a loser once again, but the way he finished in Russia made it not an epic fail but a heroic performance and a classic Olympics moment.
Several weeks before his Sochi race, Carcelen crashed while training and cracked two ribs. Then he came down with a serious respiratory problem. Doctors, sensibly, told him not to compete; you just don’t ski a 15-kilometer cross-country race against Olympics competition with your lungs compromised and two broken ribs.
He ignored them, telling me at the time, “It’s a good thing! It’s an opportunity, a chance to show people what they can do, what’s possible.” Typical Roberto.
So he raced. And crossed the finish line in 87th place, dead last, laboring to the end and proudly waving a Peruvian flag. He finished nearly half an hour behind gold medalist Dario Cologna of Switzerland, who came back to the finish area to congratulate him.
In Peru he was an instant hero — “The Man Who Won by Losing,” the personification of Olympics grit and determination. The crowd that turned out at the airport, the media attention, the autograph-seeking kids, all convinced him he had a message that resonated and had people’s attention. He used that fame to create the non-profit Roberto Carcelen Foundation, opening a computer training school for kids in one of Lima’s worst slums.
He did what he believes any sports figure with any hint of celebrity should do. “You’re in a position, for sure, to give back” he said, “and you should.”
The foundation’s mission has morphed over the years and now funds 20 scholarships a year to the same population of kids from the same neighborhood, placing them in established computer training schools. Similar programs operate in rural Washington State and in Florida.
He retired after his Sochi experience, gladly hanging up his skis as a 43 year-old and watching the Pyeongchang, Korea Olympics from the comfort of his couch.
Carcelen has to amass a minimum number of International Ski Federation points in approved competitions to meet an Olympics “B” standard. That’s a system Games organizers have to encourage participation in winter sports in developing countries.
If he beats the odds again and makes it to Beijing, Roberto would be 50. That’s an unheard-of, ridiculous age for an Olympics cross-country skier. He hasn’t trained seriously or competed at the sport’s highest level for half a decade. Carcelen has never been on skis in the country he has represented twice on the Olympics stage.
If he doesn’t qualify? That’s OK, too. He wants the world to watch him try. He wants to raise awareness and raise money for Parkinson’s research. He wants to show his native country and show Parkinson’s patients everywhere that, “Todo es possible.”
Everything is possible. That’s what Roberto Carcelen does.