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‘I’m not quitting’: Kyle Brown refused to bow to his disease during his 2021 Ironman World Championship attempt

Side effects of Lou Gehrig’s Disease made the swim nearly impossible, but Utah triathlete vowed to finish or die trying

(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’s family stood, then squatted, then sat on the boat ramp at Sand Hollow Reservoir on Saturday. Their eyes cast out toward the red bluffs, scanning the water for any glimpse of Brown or his escort, who glided next to him on a prone paddleboard.

They went down to beach at about an hour and a half into the 2.4-mile swim. Then to the ramp at two hours. Then they stayed there, as the cutoff time came and went, scanning.

“I’m nervous,” his wife, Colleen, said.

Meanwhile Brown, a Kaysville resident who had made it his final life’s goal to become the second person with amyotrophic lateral sclerosis to finish an Ironman World Championship triathlon, was doing his own internal scanning. Did he have the strength to keep going? What was the point?

Brown was already lying in a rescue kayak, pulled in after his legs began cramping from exhaustion. Hypothermia from too much time in the 65-degree water and too little body fat had made his body as rigid as a three-days-dead fish.

“I’m sorry, but we’re going to have to bring you in,” an official told him.

“Do I have any other options?” the 52-year-old asked.

He did, the official said. He could keep swimming, but he had to start again right away.

Brown scanned his body and confirmed he’s not dead yet.

Julie Jag/The Salt Lake Tribune Kyle Brown's family and friends, including his wife Colleen, center, and brother Trent, left, await the Kaysville triathlete's return to shore during the 2021 Ironman World Championships at Sand Hollow Reservoir near St. George on Saturday, May 7, 2022. Brown has Lou Gehrig's Disease and was hoping to become just the second person to complete an Ironman championship. His body didn't adjust well to the 65-degree water and he didn't finish before the 2 hour, 20 minute cutoff, but he didn't quit either. He finished the swim in 3:45:24.

“So I looked at him and then I just rolled back into the water,” Brown said. “And then I said, ‘I’ll see ya!’”

It would be another hour before his family would see him two-handed backstroking through the water. It would be a half hour after that, for a total time of 3 hours, 45 minutes, 24 seconds in the water, that Brown’s pale, stiff feet would find the concrete ramp’s ridges. He stumbled at the start, his legs still not reliable. But with the help of Coleen and several volunteers, and to the loud cheers of the couple dozen fans still in attendance, he took one wobbly step after another to the top of the ramp.

There, after he shed his wetsuit, an Ironman official conferred with him. Brown, looking cold and dejected, shook his head.

He would not, could not go on.

“I feel like I let people down,” he said. “This was not for me anymore.”

Brown wanted to show people with ALS that they can shelve the “How to Die” book — the one he said his doctor’s gave him immediately after his diagnosis in July. And he’s done that. In September became the first person with ALS, better known as Lou Gehrig’s Disease, to complete an Ironman 70.3 World Championship. His time of 5:38:35 Put him in the top half of his age group. So, as is the former elite cyclist’s nature, he set his sights on a bigger challenge: a full Ironman.

It seemed relatively feasible until late March when he experienced what he called a “fast slide.” ALS is a rare neurodegenerative disease that causes muscles to atrophy, and within the course of a couple of weeks he went from brisk jogging to barely able to walk. A few weeks before the race, he gave up swimming because he couldn’t control his jaw muscles enough to keep the water out while doing a freestyle or side stroke.

“Just kind of seeing his decline in the last month, I didn’t think there’s any way that this was possible,” said Brown’s younger brother Trent, an occupational therapist who occasionally works with people who have ALS. “Nor did I really want him to do it, just knowing the pain and the suffering.”

In Brown’s mind, though, the pain of giving in to his disease would have been far worse than anything he would experience on the 140.6-mile course, which ranks among the hardest in Ironman history. He had similar convictions about giving up before reaching the shore.

Julie Jag/The Salt Lake Tribune Kyle Brown is still able to muster a small smile after the Kaysville triathlete could not coumplete the 2.4-mile swim before the cutoff time during the 2021 Ironman World Championships at Sand Hollow Reservoir near St. George on Saturday, May 7, 2022. Brown has Lou Gehrig's Disease and was hoping to become just the second person to complete an Ironman championship. His body didn't adjust well to the 65-degree water and he didn't finish before the 2 hour, 20 minute cutoff, but he didn't quit either. He finished the swim in 3:45:24.

“I’m not quitting,” he said he told the Ironman official who pulled him aboard the safety boat. “You’re going to have to make me quit or I’ll die swimming because I’m not quitting.”

And he didn’t. He kept paddling, employing a double-armed backstroke that allowed him to keep his face out of the water. He kept kicking, even though the water was so cold he couldn’t feel his feet. He kept going, even though he knew this race, his last race, wouldn’t end the way he planned.

Wasn’t there merit to that?

“There is,” he said. “But that’s not me. I want more.”

Brown still wants more. More opportunities. More time.

Recently, he started taking part in a drug trial with the slimmest of hope that it might stop the progression of a disease that typically claims its victims within two to five years of diagnosis. He won’t know for at least several months if it worked, and maybe never. But it’s worth a try, he said, even if it only helps researchers create something better for others after he’s gone.

It’s similar with the triathlon. It was worth the attempt, even if he didn’t get the result he wanted.

“I’m glad I tried it,” Brown said. “Because if not, I would have failed completely.”

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