Lou Gehrig’s Disease is killing him. But ALS won’t stop Utah’s Kyle Brown from his Ironman dream.

Something deeper than the pain: What powers Ironman triathletes through exhaustion, fatigue and agony

(Trent Nelson | The Salt Lake Tribune) Triathlete Kyle Brown gets ready for a bike ride at his home in Fruit Heights on Tuesday, April 26, 2022.

Kyle Brown is down to the last item on his bucket list.

Over the course of his 52 years, he’s skydived over Hawaii. He’s paraglided from the top of East Mountain near his home in Kaysville. He’s run from the cops on a motorcycle.

For the past year and a half, he has been living with and dying from, amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s Disease. It’s a neurodegenerative disease that, in simplistic terms, causes muscles to atrophy. This leads to a loss of control of voluntary muscle movements, including speech and breathing. Most people with ALS die two to five years after they begin showing symptoms.

Now just one item remains on life’s to-do list, and Brown sees it as one too many.

“There’s one thing I’ve never done that I want to do,” he said, his words slurred by the disease. “Like, literally, the only thing.”

Brown, a man who can barely jog because of muscle deterioration, wants to complete an Ironman triathlon.

Even for the fittest athletes, the Ironman can be savage: a 2.4-mile swim, 112-mile bike ride and 26.2-mile run over the course of a single day. Fewer than 50 people have finished one in under eight hours, and the cutoff is 17 hours. Along the way, competitors endure everything from blackened toenails and stiff necks to shin splints and quad tears — not to mention dehydration, digestive-system revolt and chafing.

What kind of person puts themselves through that kind of pain and discomfort? Often, though not always, it’s the kind who have deeper demons to slay or prejudices to dispel.

“There’s a lot of people toeing the line who have deep stories, whether people know it or not,” said Jonathan Ravarino, the director of psychology and wellness for University of Utah athletics and a former Ironman World Championship competitor. “And that’s, I think, also what gets them through the training and the actual race itself.”

Such is the case for three Utah athletes — Zach Josie, Skye Moench and, yes, Brown — who will be among the approximately 3,000 competitors plunging into the Ironman World Championship in St. George this Saturday.

Here are their stories.

Because he is ‘The Fastest Dwarf on Earth’

(Trent Nelson | The Salt Lake Tribune) Triathlete Zach Josie in South Jordan on Monday, April 25, 2022.

Go ahead, call Zach Josie names.

It’ll just fuel him to go even faster, and the 35-year-old Daybreak construction worker is already no slouch. Plus, you’d be hard-pressed to come up with a more creative name than the one he’s already hung on himself.

“I always jokingly say,” Josie said, “I’m the fastest dwarf on Earth.”

He’s setting out to prove that this weekend, at least in reference to Ironman triathlons. In St. George, Josie can become just the second person with dwarfism to complete a full-distance Ironman triathlon. He’s also hoping to be the fastest. John Young of Canada set the bar when he completed the 2016 Ironman Maryland in 14 hours, 21 minutes.

Josie was born with Ellis-van Creveld syndrome, a rare form of dwarfism that, as of 2007, had been found in only 150 people (though Josie and his younger brothers make up four of them). He’s slightly taller than those like Young and actor Peter Dinklage who have achondroplasia, the more common form of dwarfism. He still only stands 5-foot tall, though, and most of that height is found above the waist. His torso is a typical size, while both his legs and arms are much shorter than average. Even his 10-year-old nephew has a longer inseam, he noted.

“I didn’t notice [how short my legs were] until I really started getting into triathlon,” Josie said. “And it became a little bit of a bummer because I loved [triathlon] so much. But it was like, I could not fit on these bikes. I didn’t know what to do.”

For most of his racing career, which started seven years ago and has consisted of nothing longer than a half-Ironman (70.3), Josie has just made due. He was constantly pulling his wetsuits up or down. He shopped the women’s rack to find running shoes that were both wide and short enough, or he had to special order them. And bikes? He was like Goldilocks, looking for one that was just right. He couldn’t reach the pedals on larger ones, which fit his torso. The smallest size allowed him only slightly better access to the pedals — he could reach them, but only with his toes, so he had to fit it with flat pedals instead of the more efficient racing cleats. Plus, it made an accordion of his upper body.

“This sport,” he said, “... definitely doesn’t cater to people with dwarfism.”

Yet when the St. George 70.3 he’d signed up for last year was converted to the 2021 Ironman World Championships — a full-distance race — making due was no longer an option. His back and knees made that painfully clear.

Josie called every bike manufacturer he could think of looking for someone who could help. Then he did it again for his wetsuit, his bike seat and his racing singlet. It took months and many rejections, but eventually he hit upon a couple of companies willing to cater to him, often in the form of something custom made.

Now he feels faster than ever, and that’s important to him both as a competitor and a person with dwarfism. They don’t need to be mutually exclusive, said Josie, who already was regularly finishing near the top third of his age group in the 70.3s and qualified, without a special dispensation, for last September’s Ironman 70.3 World Championships in St. George.

“I wear the dwarfism thing as a badge,” he said. “Like, look, a guy with dwarfism did this hard thing. And at the same time, I take pride in that I’m racing as fast as average-sized people.”

It’s not uncommon for his speed to take others by surprise, though, and some express that surprise less eloquently than others. Josie’s nickname for himself has its roots in one such uncomfortable encounter. But, he insists, those encounters in triathlons are extremely unusual. Besides, “when someone says something mean,” he said, “it’s like fuel.”

And when the miles get long, that may be exactly what the Fastest Dwarf in the World needs to make it through the final stretch.

Because Salt Lake’s Skye Moench can win it all

(Francisco Kjolseth | The Salt Lake Tribune)Triathlete Skye Moench seems pretty well adjusted for a pro Ironman racer (ranked No. 8 in the world) and a CPA, as she trains in Salt Lake City on Thursday, April 28, 2022.

The St. George Ironman started as a full-distance race in 2010. After just three runnings, however, organizers shortened it to a half-Ironman, or 70.3.

The reason? With 7,000 feet of elevation gain on the bike and another 2,400 on the run, it had a reputation for being too hard.

This does not concern Skye Moench. She doesn’t flinch at the 90-plus-degree dry heat forecasted for Saturday’s race, the first full-distance Ironman to be held in St. George in a decade. The unpredictable howling winds, which can create surfable white caps across Sand Hollow Reservoir’s usually placid waters, do not stir any trepidation in her.

Moench, a pro Ironman triathlete from Salt Lake City, who is considered an outside favorite to win the women’s title in Saturday’s race, has become comfortable with the uncomfortable.

“The thing about Ironman racing particularly is that because it’s so long, like, so many things can happen. So many wrong things can happen to people,” Moench, 33, told The Salt Lake Tribune. “And so it could be anyone’s day. …

“There’s just so many things like nutrition or heat or, like, your bowels blow up. There’s so many things in an Ironman — that’s kind of what makes it exciting.”

Moench has had her day before. More of them haven’t gone her way.

She grew up in an abusive home, and she was 12 when her parents’ messy divorce split her family apart. She and her sisters moved with her mother first to Washington, then to Utah, where she attended Lehi High. She competed for the Pioneers track team, but with little fanfare.

“Life felt so difficult then. But it helped me deal with stuff that happened later,” she told Triathlon Magazine. “Anything after that never felt worse than what I’d already gone through.”

To cope, Moench leaned into her goals, pursuing them relentlessly. Get good grades. Go to BYU. Graduate without any student debt. Land an accounting job at Earnst & Young.

She’d become so adept at accomplishing her goals that when Moench decided to become a professional triathlete after enjoying just a few age-group victories, she never felt doubt.

She made her full-distance Ironman debut in 2016. Three years later, she won Ironman Germany, which qualified her for the first time to race in the storied Ironman World Championships in Kona, Hawaii.

Then Moench got a refresher course in life’s unpredictability.

Two and a half weeks before the 2019 championships and about as many miles from her house, she crashed her bike on the tail end of a training ride in Mill Creek Canyon. She woke up from the crash in the middle of the road. In addition to a concussion, she’d broken her collarbone, her right elbow and a small bone in her hand. Unable to even brush her own teeth, she certainly wasn’t fit to compete in Kona.

Uncomfortable but undeterred, Moench plotted a course to Kona in 2020 and peppered the path with small goals. She checked off all of them except two. One was that she could never completely extend her injured elbow, and she expects she never will again. The other was competing in Kona. The championships, along with most of the races that season, were wiped out by the COVID-19 pandemic.

So, Moench recalibrated again. And again. And again.

“There were a lot of things that I was like, ‘Oh, this is so annoying.’ But I just controlled what I could control and I just stayed positive,” she said. “I guess I have more to prove.”

By now, Moench should be able to say she’s raced in Kona, but that will have to wait until October, at least. But by Saturday evening she should be able to check off her goal of competing in an Ironman World Championship.

Moench has five St. George 70.3s behind her and often trains in the area. She’s as familiar with the Washington County landscape as any competitor. And if she’s learned anything, it’s that no one knows how this race will go.

“Not that I’ve been to Kona, but Kona is, like, pretty predictable. You know it’s going to be hot and humid. You know, it’s going to be windy. It really suits certain athletes’s physiology, or whatever,” she said. “So St. George, like, it could be cold. It could be extremely hot, extremely windy. It could be raining. There’s so many variables that we’re not going to know until, like, two days before.”

And that’s why she’s looking forward to it, pain and heat and hills and all. She’s comfortable with the uncomfortable and at ease with the unpredictable.

Because life — and death — makes sure he won’t get another chance

(Trent Nelson | The Salt Lake Tribune) Triathlete Kyle Brown rides in Farmington on Tuesday, April 26, 2022.

Kyle Brown’s impossible dream didn’t seem so impossible last May, when he competed in the Ironman 70.3 North American Championships two months after ALS began to rear its head. He “raced angry”— directing it at both life and a cadre of doctors who, because of his fitness, wouldn’t believe him when he told them he had the disease — and finished 305th out of a field of 2,779. He was finally officially diagnosed in July after demanding a doctor evaluate him for a third time.

The dream didn’t seem impossible in September, when Brown gained a bit of notoriety for completing the Ironman 70.3 World Championship in St. George. Of 323 people in his age group, he finished 121st, despite already experiencing a decline in muscle response.

His final life goal didn’t seem impossible at all, in fact, until the end of March. That’s when he experienced what he calls a fast slide.

“My whole body is failing now,” he said. “Before it was mostly my speech and a little of the rest, but now it’s set in pretty hard. My hand strength is about 20% of normal. I can’t run at all. And walking is pretty bad. And I can’t swim.”

But he can still bike.

That’s always been his strongest discipline. Brown has been racing bikes for 28 years, including the first Tour of Utah and six LaToJa tours. For the past decade, he’s competed at the elite level. He’s not there anymore, but he’s not far from it. On a recent cloudy morning, he pulled his road bike from the garage, wiped it down and set out on a 100-mile training ride that would take him through the pastoral backroads of Davis County down to the Salt Lake airport and back. In the early going, at least, he averaged 20-22 mph.

Even with biking, though, he has had to make some concessions. He’s abandoned his triathlon bike, sleek and fitted out with aerobars, because it requires too much body control to keep it upright. Similarly, he no longer has a cycling computer mounted on his handlebars to keep track of his cadence and distance.

“It’s too depressing,” he explained.

A few weeks back, when his body really started to unravel, Brown decided to abandon this week’s race. Essentially, that meant leaving that last scrap of paper in the bucket. Reversals of ALS symptoms can happen, but they’re even more rare than they are fleeting. In the United States, 5,000 people are diagnosed with ALS each year. Brown knows of 53 verified reversals.

Odds are, he won’t get another chance.

But the race had threaded itself through Brown’s mind like the stitching of a wetsuit. He thought about Jon Blais, the only person with ALS known to have completed a full-distance Ironman World Championships. Blais recorded that feat in 2005, two years before his death, as his own last wish. Fifteen years later, when Brown was reeling from his own ALS diagnosis, he found inspiration in the story of “Blazeman.”

“In my head I started getting an idea: OK, I’ll go watch. I’ll go get my stuff and my number. Then I’m going to suit up,” said Brown, who will wear bib No. 179 in honor of Blais. “And it really is for ALS awareness. And I hope it inspires the people, too.”

His plan is simple.

Step 1: Show up.

Step 2: Dive in.

Step 3: Survive.

“I’m just going to see what happens,” he said, noting he’ll use sidestroke, backstroke and any other means necessary to get through the swim before the 2-hour, 20 minute cutoff. “What’s going to happen? Am I going to die?”

That last question is rhetorical. Brown is going to die. It’s probably going to happen sooner than later, though he’d prefer the reaper not come for him on the racecourse in St. George. For Brown, though, death isn’t the scariest outcome anymore. The scariest outcome is regret.

Which is why Brown will be on the beach at Sand Hollow Reservoir on Saturday, swim cap covering his bald head, ready to literally test his limits.

“I have a habit in life of jumping in with both feet without thinking, and then getting a little wet,” he said. “And so I decided to kind of think of this the same way and figure it out as I go. And if I fail, it doesn’t matter.”

He has one scrap of paper left in his bucket and it’s one too many.