"I Have A Terminal Illness But I'm Riding The 947 Cycle Challenge 2019"

“I Have A Terminal Illness But I’m Riding The 947 Cycle Challenge 2019”

When your life gets turned upside down and it's discovered that you have a terminal illness, what do you do? Liandi just wants to inspire others...

by Women’s Health

January 25, 2019

“I Have A Terminal Illness But I’m Riding The 947 Cycle Challenge 2019”

It’s a year of new goals, new challenges and new dreams. Last year I had the privilege of speaking to the most amazing girl and my mind was made up before I even ended the call. Her 2019 goal would be mine too…

Liandi Steyn

Meet Liandi Steyn. Life motto: The man afraid of dying will never learn to live. She’s the inspiration you’ve been looking for.

“I was born with dysautonomia,” she begins. This terminal illness usually has a later onset, but an ovarian tumour discovered when Liandi turned 12 sped up her symptoms.

“After the tumour was removed, I was diagnosed with autonomic nervous dysfunction along with prolonged QT,” Liandi explains. This condition is also known as Sudden Death Syndrome and it means that all the basic bodily functions we never even contemplate, Liandi thinks about constantly. Our automatic nervous systems take care of our regularly beating hearts and breathing. Liandi doesn’t have this luxury.

“My heart doesn’t function properly like everyone else’s, and sometimes it just stops beating,” she continues. Everything has to be monitored – oxygen machines, heart monitors – even swallowing isn’t an option, “so I have a tube to my tummy.”

Liandi’s mother is a nurse and “she’s on duty 24/7,” Liandi says. Even in the middle of the night. “If I stop breathing, she’s the one who resuscitates me,” she says.

“My mother has done so much for me and I just want to be the best I can so I can make her proud,” Liandi adds.

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A Bump In The Road (And Other Daily Obstacles)

For most Grade 11s heading out with friends, the biggest problem faced is what to wear. But Liandi has a lot more to think about. “When I go out with friends [my Mother] drops me and I say goodbye like she’s going home,” Liandi explains, “but she just drives around the corner and sits in a coffee shop in case something happens.” Because anything can happen. Simply watching the wrong movie with a jump-scare can literally stop Liandi’s heart.

“I have to choose if I am going to live my life fully,” Liandi states, “or live it plugged into medical equipment. And I’d rather be on my bike.” This girl is all the inspiration you need (and, no, I’m not crying – you are).

Cycling comes with its own challenges, of course. “My biggest fear is that the feeding tube might come out – like when I fall,” Liandi admits. This is a very real fear – it’s happened six times in the past and required three hospital visits. Luckily Scott Sports decided to step in and upgrade her bike and cycling set-up: an e-bike with proper suspension made for a smoother ride.

Even driving has its problems. “My mother has to be careful when she goes through a pothole,” says Liandi. “If she goes through the wrong way, it can throw my heart out of rhythm.” And if you thought that was rough, wait until you hear how damaging humans can be…

Haters Gonna Hate

You’d think life had thrown enough curve-balls Liandi’s way, but kids can be cruel. And it wasn’t just the children – it was the teachers too. “They called me the walking dead,” Liandi says, the hurt still present in her voice. The scratches and bruises that you get from falling off your bike are nothing compared to the scarring words of a careless individual.

“Sometimes I think that all people see is the illness; they don’t see the person behind the illness,” Liandi adds. There is so much more to this girl than her condition. Luckily Scott could see that – even if the bullies couldn’t. “One child here said to me, ‘I’d be sick any day to get the things you’re getting,'” she continues. “Scott gave me the bike and everything at no cost, but obviously if I could trade that for my health I would do so in an instant.”

T Swizzle said it best with ‘haters are gonna hate’, but it’s still a struggle not to let the muggles get you down. “It’s not easy [to stay positive],” Liandi says. “But in your struggles you might be inspiring someone else. Don’t keep [your struggle] to yourself. Share it with someone you can trust.”

Coming In Scott

“Cycling is the only time I feel in control,” Liandi says with a smile. “I just want to do everything to the best of my potential. A lot of sections I can’t ride and it frustrates me – even though I know it’s for the best. I still want to push the boundaries.” Just the kind of attitude Scott looks for.

“The bike I got from Scott is an e-bike and I love it!” Liandi exclaims. “Even though a lot of people see [e-bikes] as mechanical doping.” Cut yourself some slack, girl. Liandi was wheelchair-bound a mere five or six months ago (due to a stroke she had two years ago). “But my mom said there’s no way you’re staying in this wheelchair – you have to get up and get going again.” She didn’t need to be told twice.

Training

“I work out for four hours a day at the gym and train in the pool to build up my strength,” Liandi explains. “I’m almost back to normal [after the stroke] but my left side [isn’t quite there] – my right leg has 200W of power but my left leg will be only, like, 2 or 3W. It puts a lot of strain on my right side so the e-bike makes up for my left leg.”

It’s a challenge to train as she can’t rely on heart-rate zones. “If you tell me I have to stay in zone one I’m never going to get on the bike,” Liandi laughs. “Because zone one is me just sitting down.” What’s more, she can’t lift her arms above her head when working out. “I will just topple over!”

“Core training is also important for me because you have a main artery going through your abdominal muscles,” she explains. “So if you tighten your abs, your blood pressure is more regular.”

When it comes to cycling, Liandi heads out for 60km training rides with her doctor. If her heart isn’t feeling up to it, a spin class will do. But it’s not as easy as ‘get on your bikes and ride’ – as Queen would have us believe. “I have all my extra baggage as well [when I ride],” Liandi explains: magnesium to inject herself with, and her mom constantly watching her heart rate on a monitor.

The 947 Cycle Challenge

The 947 Cycle Challenge is a 94.7km road race that takes place in Joburg every November. Liandi took part in the 8km fun ride in 2018, but the goal this year is the full 94.7km.

“I felt so proud of myself this weekend,” she says. “Scott gave me merchandise and I wear that shirt with so much pride because I feel like this is something I actually earned – not just because I’m sick, but [because] I actually earned it.”

Not only is the altitude a factor when it comes to Liandi’s heart, but her body can’t regulate itself against the heat. Her support crew had to keep her cool using water pistols. So with all the odds not exactly in her favour, she was still doggedly positive: “It’s a great day to be alive.”

“After this weekend my mother was in tears,” Liandi adds. “In November 2017, the doctor told her I’m not going to see Christmas of 2018. But I’m still here.” And she’s full of dreams for the future.

Dream Big Or Go Home

“My goal is to show other terminally ill children that you don’t need to be restricted by your illness,” says Liandi. This goal is being put into action by riding the whole 947 Cycle Challenge this November. I plan to be there, riding alongside. Why not join us?

“I might not have a long life but I can have a fruitful life,” Liandi concludes. “You can leave something behind. People won’t always remember what you said to them, but they will remember how you made them feel.”

If you’re feeling inspired but cycling isn’t your style, Liandi has a Back-A-Buddy page and any support goes a long way.