‘I’m the luckiest Paralympian in the world’ – Team South Africa’s Kirsty Weir

The makeshift workshop and interview room is actually a space at the end of a corridor in the Paralympic village.

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Rohan Kennedy is assembling Kirsty Weir’s competition bike and this is a good time to have a chat with the para-triathlete.

I ask her to wait a minute so that I can fetch a chair, even if it is made of sturdy cardboard, just like the beds the athletes sleep on.

“Not to worry, I’ll sit on the floor. I’m happy to sit on the floor.”

The chair is fetched, but her point sums up who she is – in fact, who every Paralympian is.

Joy, a word she uses often, is etched across Weir’s features.

And the phrase she uses most often: “I’m the luckiest Paralympian in the world.”

“I have been gifted the most amazing opportunity, and in this past year that I’ve been doing para-triathlon I’ve met the most amazing people in my life. I genuinely can’t express my happiness. I feel safe, accepted, and it just feels right. And that’s the hardest thing for me to understand, because I’ve never experienced that before. I’ve had many trials and tribulations that I’m not comfortable going into now, but for the first time, I’m feeling a bit safer.”

Originally from East London, this 44-year-old has always been on the move, not that all of it was voluntary.

“I went to almost every school in East London because we moved house every two years. And my mom loved doing up houses, so we were always on the go.”

The younger Weir was so talented that she went to the United States on a cross-country scholarship and at the age of 18 she entered her first Two Oceans half-marathon in Cape Town.

There, she finished 18th in 1:30:45.

A year later she was the second female home in 1:22:27 and another year later she won the famous half-marathon in 1:18:24 at age 20.

The world was at her feet, in every sense.

However, only in a parallel universe does life follow a pre-written script.

“I’m the luckiest Paralympian in the world.”

“I can remember the day as clearly as anything. We were living at Atlantic Beach in Cape Town, and I was running down the main road. All of a sudden, my left leg wasn’t there. It was swinging. That’s the only way to describe it. Fourteen years ago, I was 30. I went to a physiotherapist, biokineticist, chiropractor, even the Sports Science Institute. I tore strips from the Yellow Pages and put them into my shoes to build them up. I was told by the experts, ‘it’s all in your mind’. I just kept trying to find an answer. Surely I wasn’t fabricating what was happening to me? But you think you must be mad, because these people are telling you there’s nothing wrong with you. And then I started having severe migraines, which I still have for three or four days at a time. I’d fall a lot, be unsteady on my feet, have a loss of power and balance. I didn’t know what was going on but I kept running, kept trying to be who I had been. I was even tipped for a top 10 Comrades finish that year.

“Things got worse and the next 14 years were difficult. I was eventually diagnosed with a rare condition called neurological lupus. It took so long to discover that I’ve got lesions on the brain. It’s affected the brain and destroyed muscles on my left side. In those 14 years, everything degenerated, and I was constantly told by experts that it was all in my mind, that I was ‘crazy’, so I kept going, but the performances kept getting worse. I didn’t understand, but being stubborn and stupid, I kept going.

“People say, ‘I’m sorry,’ but I’m so grateful. I know that the condition will never reverse or go away.”

“I’m the luckiest Paralympian in the world.”

She stetches out her hands. It’s a warm day in Paris, and warm enough inside the village for short sleeves, but Weir has her green Team SA tracksuit on and she’s still feeling cold. “You can see I’m blue because the blood doesn’t flow, and I get hypothermia quickly. I’m losing my teeth, my hair has fallen out. It just attacks everything in your body. So it’s attacked my brain, my nerves, my muscles. But, there’s nothing negative. Hair is hair, teeth are teeth. I have life and I have this life. I am blessed. I ask myself, ‘who gets to do this life that I have?’

“I’m the luckiest Paralympian in the world.”

Weir is still soaking up the experience of being a 2024 Paralympian living in the official village in Paris.

She brought her own Future Life low GI food and some sachets of Nestle instant coffee, not knowing that all nutrition is freely available in the village.

Before she takes a sip of a protein chocolate shake from a “Grab ’n Go’s” that are available for athletes, she says to Rohan, her coach, “is this OK for me to have, does it have a banned substance in it?”

His answer is no, but it shows the commitment Weir has to being a Team SA Paralympian that she’s concerned about contaminated liquids.

“Whenever I’ve travelled, I’ve always been alone. I’ve never had anybody with me, and with a bike and gammy legs and all sorts, it’s been a hard year. I’ve always had to take my own food, I can’t afford to buy anything. For the first time I’m having a ready-made protein drink. I’m completely overwhelmed.”

France is her second trip outside of South Africa in her developing career of international para-triathlete.

“I went to Australia in March this year, but unfortunately, I had a lupus attack the morning of my event. It was just a struggle to get up and out of bed and the swimming was horrible. But I finished. The thing with neurological lupus is that you never know what’s going to happen next. I don’t know what tomorrow will bring. Some days I get up to train and I make it to the garage and I fall on the floor and spend the next three hours crying because there’s just nothing, nothing left in me. But I keep getting up, keep trying and that in itself gives me a reason to continue.

“I have a support system at home, but my parents are …” and her voice trails off.

She takes a moment.

“We struggle … my dad is 82 and my mom is 75 but life is difficult … we had to move to Gqeberha less than a month ago…”

“I’m the luckiest Paralympian in the world.”

“When I was a runner, I developed anorexia to a point where I weighed 29kg. The doctors sent me home to die, basically. My mom would pack me a hot dog for lunch and I’d throw the roll away and eat the vienna, but leave a few crumbs in the lunchbox and she’d think I’d eaten the whole thing. Then something clicked in me and said, ‘I need to get better’. But I had zero help. I had no psychologist, psychiatrist, dietitian. I had to do it all alone. And then somebody said, ’oh, you’ve put on weight and you’re looking so good’.

“So, when I got better, I told myself that if I could inspire just one person to never give up I’d have achieved something. And I said to my mom, ‘Mommy, I want to do motivational speaking. Anorexia is nothing.’ And then I went back to running. And then, this happened. I didn’t expect this to be part of the journey. I thought the journey was going to end there.”

“I’m the luckiest Paralympian in the world.”

“When I say that I mean it. If I wasn’t afflicted by this then I wouldn’t be here. I wouldn’t be living the dream as a Para-triathlete in Paris. I had wanted to start out as a para-runner, and they I was classified for athletics. So I thought, ‘oh, cool’, I’m gonna run now. And then a lady from Triathlon South Africa, Beryl Campbell, phoned me and suggested I tried triathlon. I replied, ‘You’re bloody mad. I don’t swim …’ but, don’t plant a seed in my head. Two days later, I found out there was a local triathlon in Knysna. I borrowed a bike and an old helmet and bike shoes. Afterwards, my mom said, ‘you didn’t enjoy that’. I said, ‘oh, Mommy, I loved it!’

“From there, I borrowed bikes for the next year, became the South African para champ, the African para champ. But, I still didn’t know about Paralympics until TSA said I must try the world circuit. But they told me I wouldn’t qualify for Paris because I only had a year to do so.

“Don’t tell me I can’t do something. I’m stubborn and stupid. That’s what keeps me going.

“Being here, I look at these people that inspire me so much more than you will know. I have so much joy inside me. I have never felt so safe … I’ve met the most amazing people … I’m humbled, grateful, I don’t even know how to express what joy it gives me and what it means to me and the people that it brought into my life.

“I was watching something last night about the Paralympics, and I saw a motivational speaker say, ‘if you’re a para athlete, you mustn’t ask, ‘why did it happen to me?’ But, I’ve never said, ‘Why me, am I sick?’ I say, ‘Why am I getting all of this wonderful stuff in my life?’ I can’t understand how all this good stuff is happening to me. I can’t understand it.”

Later in the day I bump into Weir as she’s making her way back into Team SA headquarters and towards her room.

“I’ve just been on the phone to my mom and told her about my day. I’m not sure she even believes what an experience I’m having.”

“I’m the luckiest Paralympian in the world.”

Gary Lemke is reporting live from Paris for the Team SA website for the duration of the Paris Olympics 2024