In an inspiring tale of courage and determination, Kylie Frost has overcome a painful disease to conquer her first Ironman - with 70 seconds to spare.
The wooden cane that Kylie Frost once relied on to help her walk now hangs on her wall, holding her colourful medley of triathlon medals.
The latest addition is perhaps her most prized - the Ironman NZ finisher’s medal. Frost was the 511th - and last - athlete to officially complete this year's gruelling Ironman course in Taupō, crossing the line with just 70 seconds to spare till the 17-hour cut-off.
But the time didn’t matter much to Frost. The 47-year-old mother of three lives with ankylosing spondylitis - a painful and exhausting inflammatory arthritis - so just finishing her first Ironman meant everything.
Six years ago, she couldn’t run and often needed crutches to walk. She had to have a nap halfway through making her bed. And she swam with a mask and snorkel because she couldn’t turn her head to breathe.
When she finished the Ironman - running down the red carpet in the finish chute, cheered on by her family including nine-year-old daughter Samantha and husband, Tony, who’d completed the race three hours before her - Frost opened a locket from around her neck, revealing the photo of her old coach, Tony O’Hagan.
A two-time Ironman NZ podium finisher, O’Hagan died suddenly last June.
“We had a few conversations during the race,” Frost laughs. She had a lot to thank him for.
“When I first wanted to do an Ironman, some coaches turned me down because they didn’t understand my condition. But Tony was happy to help; he was amazing.”
There’s no doubt O’Hagan would have been proud as Frost completed the 3.8km swim, 180km cycle and 42.2km run. She reckons she could have done another lap.
“Not that I really wanted to,” she says.
But less than two weeks after she’s accomplished her “small miracle”, Frost is seriously thinking about her next race – the 2022 Ironman NZ. She wants to get faster.
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Frost remembers her first “flare” at the age of 11 – intense pain where she couldn’t stand up or walk for three days.
“I had a gastro bug at the time and the rheumatologist now thinks that’s what would have triggered it,” she says.
“I had a lot of leg pain at night as a kid, which they said were growing pains. Then I had a lot of back pain with my three kids, but it wasn’t till I was 40 that they finally diagnosed it - even though my brother has the same condition.”
Ankylosing spondylitis (AS) is an incurable inflammatory condition affecting the spine and lower back - where vertebrae can fuse and become inflexible - but the pain and stiffness can be felt in the shoulders, hips, ribs, heels, hands and feet. Frost has had all of that.
“It can suddenly move from one part of the body to the next, there’s no rhyme or reason to it,” she explains. “I couldn’t work out why my ribs hurt; I thought I was out of breath all the time because I was unfit. But my lungs weren’t moving.”
Even today, she has only 10 percent lung expansion. “I’m fit enough not to notice it - only when I’m riding up hills. Then you can hear me wheeze,” she says.
Frost got to the point where her legs would collapse under her on stairs and she needed crutches to get around. “My rheumatologist said ‘Go to a physio and strengthen your core, it might just help you’,” she recalls.
Her skeletal physio was “horrified by how weak I was”. He encouraged her to start off by walking in the hydrotherapy pool at West Wave, near her home in west Auckland, three times a week.
At the same time, husband Tony was training to be a scuba diver, and swimming 400m bursts in the pool next door. Frost was determined to do the same.
“I started going early in the morning, with a mask and snorkel because I couldn’t move my head and my neck,” she says. “It was a very slow progression – two or three months.
“Then one of the women at the front desk asked if I had a goal to work towards, and I said ‘I’ve always wanted to do a triathlon, but I can’t ride a bike and I’m still having trouble walking’.
“So she got the manager to give me a pass to the pool gym for two weeks to see what I could do. I’d spend half an hour on the exercise bikes and walking on the treadmill, then go to the hydrotherapy pool.”
Ten months later, Frost had trained hard enough to attempt her first event – a small ‘try a tri’ at Maraetai in Auckland in early 2016. Her husband did it with her, after she’d had a scare attempting to swim 300m in Rotorua’s Blue Lake the month before. “My chest froze up – a bit like an asthma attack,” she says. “I had to have a full cardio check-up before I was allowed to do the triathlon.”
That small triathlon triggered a rush in the Frost family. A month later, Tony signed up to do the 2017 Ironman NZ. “I didn’t even know what an Ironman was,” Kylie admits, “and I watched him train over the next nine months thinking, ‘You’re insane!’
“A year later, I finally admitted out loud, ‘Yeah, I want to do this too’.”
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The Frosts live on a car yard they own and run in Henderson. They work there seven days a week, taking turns to do their triathlon preparation. “Saturdays are my long training days; Sundays are my husband’s. One will be at work while the other trains,” Kylie Frost says.
“During the week, it’s a lot on the wind trainer and treadmill, so we can make it work at home. We have a big white board in the office with our schedules – there a lot of juggling with Samantha’s things too. It got a bit insane for a while there.”
When Frost was first diagnosed with AS, she thought it was a life sentence. “It’s degenerative, so eventually it will get worse for me, and I’ll probably end up in a wheelchair,” she says. “But I’ll just make the most of it while I can.
“My doctor said 10 percent of people with this condition go on to lead a full, good life. They’re the ones who are the most active.
“The challenge for me was knowing how to be active, because I would always react to a new exercise, which put me into a massive flare for a week. That’s where the physio took me back to build on my basic core strength. The pain switches off your muscles, and I needed to reactivate my muscles so I could do normal daily stuff.”
She could have given up running. “I’d run 500m and have excruciating pain in my ankles, but if I kept going it would disappear as my glutes and hamstrings activated and clicked in. Once I understood I had to get through that period, it was okay.
“My husband said after the race [the Ironman] I have something he doesn’t – mental strength.
“My disease has given me drive and determination – something that most athletes strive to find. If I just had the physical strength to go with it, there would be nothing I couldn’t do.”
For three years, she worked with Tony O’Hagan, a five-time national triathlon champion who became a successful coach.
“He understood me, and knew we just had to train differently; take a longer, slower approach. I could talk to him about anything,” Frost says.
When O’Hagan died suddenly, aged 54, Frost was devastated – but even more determined to complete an Ironman “to prove his faith in me was justified”.
Her husband’s coach, Andrew Mackay from Boost Coaching, offered to train Frost to keep the momentum going. She also became one of two budding Ironman athletes to receive the Tony Jackson scholarship for the 2021 event – which covered her entry and coaching costs.
MacKay’s coaching style was different, but Frost was able to adjust. “We crammed a year into five months to get me ready,” she says.
He was there in the early hours of March 28, pushing her to make the finish before the Ironman cut-off deadline. “On the run in the last lap, I’d stop to walk a cone and take some really deep breaths, then Andrew would go: ‘You can’t walk, you aren’t going to make it, you have to run’.
“I had some not very nice thoughts about him at the time. But it was the right thing to do – it was what I needed.”
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Frost still has limited mobility. She lacks strength in her shoulders and legs, has bulging discs in her spine, and her ribs still don’t move a lot when she breathes.
Then on the day of the Ironman, she also had a cold and struggled with her breathing in the swim. Her feet started throbbing during the bike ride and continued through the run (which was her first-ever marathon).
But she was the urged on by her support team - her friend, Deb Sheard, ran with her through the dark, lighting the way with her phone. Tony joined her for the last 4km, and even Frost's mum began running alongside her, "even though she has issues walking, let alone running".
They all helped her to the finish in 16h 58m 50s, and she knows now she could have pushed herself harder.
“I was up and walking fine the next day; my only issue was losing a big toenail. And I was tired,” she says a few days later.
“It tells me I could potentially go faster, I have a lot more in me. My goal over the winter is to run 5km without stopping; I can do about 2.5km now.”
Frost hopes to one day run the Great Wall of China Marathon. Her husband has his focus on the world championship of Ironman events in Kona, Hawaii (this was his sixth Ironman finish).
She’s already talking about her second Ironman as soon as next year. “My physio said this could be a really good project for us over the next year. He’s planning how he can help me get faster," she says.
“This is from someone who, when I said five years ago I was doing my first triathlon, his response was: ‘Is that really a good idea?’ Now he’s going to pass on his patients to me who want to do similar things, so I can help them.”
Frost knows that being so active is not only keeping degeneration at bay, but setting an example for others – including her kids. One of her adult sons and her young daughter have already been diagnosed with arthritis.
“Sam did her first Weetbix Tryathlon the week before [Level 3] lockdown, and she did really well. I don’t think it will be long before she’s into them as well,” Frost says.
She’s still being flooded with messages of congratulations from around the globe.
“It’s inspired a lot of people. One professional triathlete who’s training overseas sent me an amazing video. She watched me on the live tracker while she was running on the treadmill and was yelling at the feed. She was in tears,” Frost says.
“I’ve had a few people around the country say they’ve entered next year’s race because of me. But it’s also great getting the name ankylosing spondylitis out there, so people recognise it." She raises money for Arthritis NZ with every event she does.
“I would love one day to get together a group of people with conditions like mine, and we all pick a race and do it together.”
She’s already proved anything is possible - "if you believe".
