Anastasia Pagonis won Team USA’s first Gold medal of the Tokyo Paralympic Games, shattering the world record in the women’s 400m freestyle swim in the S4 category - a record she happened to have set earlier that day. As a result, Anastasia left Tokyo in 2021 with one Gold, two Bronze medals, and her newfound celebrity status as a 17-year-old sports superstar.

It is an incredible accomplishment for a young woman who - only three years before the Games - had fallen into a dark depression. Anastasia was diagnosed with genetic and autoimmune retinopathy, which means her immune system attacked her retinas. By 14, her vision had almost completely deteriorated and Anastasia had to find a way to climb out of the darkness that enveloped her emotionally.

“Swimming is my outlet. Swimming is a place where I feel free. It’s my happy place. It’s the one place where - as much as I love my guide dog - I don’t need my guide dog. It’s just me and the pool,” she said.

Anastasia is now a social media sensation and a role model to teenagers - sighted or otherwise. With more than 2.3m TikTok followers and 300,000 more on Instagram, Anastasia campaigns against bullying and explains what it means to be blind or visually impaired, hoping to break down barriers for disabled people.

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Fighting back 

Born in Long Island, New York, in 2004, Anastasia grew up playing soccer but, by the age of 12, she was getting ‘kicked in the face’ with the ball too often. That led to questions about her vision. 

“When this first happened, it was a lot for me to handle,” she said. “I was a teenage girl, and it was just a shock. I went into a really dark depression. I was extremely suicidal. I had extreme anxiety, depression, PTSD… I didn’t want to get out of bed.“

Her deep depression lasted for eight months. Her parents set small tasks to help rebuild her confidence and, slowly, their plan started to work. Her parents also suggested Anastasia get back in the pool. She’d switched to swimming - a safer option than soccer - but Anastasia’s sight deteriorated more quickly than expected. She’d initially been misdiagnosed and by the age of 14 she had no useful sight left. 

“The first time I got in the water, I was crying,” she recalled. “I told my Mom I never, ever, wanted to do that again. But the next day I said: ‘Mom, can I go back to the pool and try again?’”

And that’s what she did the next day, and next day, and the day after that. But swimming at a fast pace without eyesight is challenging and dangerous. Anastasia has sliced her nose and broken her fingers, hands, and ankles: “It was a process, to say the least.” 

The enormity of the task was a surprise: “I remembered swimming as something that just came easy to me, but now that my vision wasn’t there it was this task that I knew I could do. It was just how I was going to do it.”

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Learning to swim again

Getting a coach wasn’t easy but Marc Danin, the owner of a local club on Long Island, took her on. “At first I thought it would be easy,” he told The Washington Post. It wasn’t.

The main challenge was to ensure Anastasia didn’t swim into the end of the pool. Her coach donned a pair of blacked-out goggles and learned strategies himself so he could guide her. “He taught me how to swim all over again,” she said. 

Anastasia made her international debut in the Melbourne 2020 World Para Swimming Series in Australia, just a month shy of her 16th birthday. She won Gold in the 400m freestyle and Bronze in the 200m medley. She broke two world records during the qualifying trials for Team USA’s Tokyo Paralympic squad and then became the first US athlete to take Gold in the Games in 2021. Anastasia finished more than 10 seconds ahead of the pack to win the 400m freestyle in a record 4min 54.49 seconds.

“If someone had told me during those dark eight months that I’d had, that I would be competing in the Paralympics two years later, I would not have believed them,” she said. “I would have laughed right in their face.”

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TikTok teen queen

At the same time that Anastasia was getting back in the pool, she also started getting interested in social media, inspired by Molly Burke, a blind Canadian YouTuber who video-blogs about her condition.

Anastasia noticed that there were no blind teen athletes on social media, so she decided to change that by setting up a TikTok channel. It is partially a coping mechanism but it also comes from her genuine desire to make a difference. Her social media following grew quickly. Some posts have been viewed many millions of times.

Anastasia’s overriding message is simple and clear. “You might have to climb over some mountains [in life] but you can do it. And being vulnerable is okay, and asking for help is okay.”

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Dispelling myths‍

As well as addressing blindness, she discusses another problem online that is common to teenagers. “I dealt with a lot of bullying,” Anastasia recalled. She feels that she’s helping by letting her followers know they are not alone - that’s ‘super important’.

Some of Anastasia’s most successful posts have been ones in which she has addressed misconceptions about blindness and mundane (for sighted people) things like eating, putting on make-up, and brushing her hair. Sometimes people say to her, “You don’t look blind.” It is a stereotype Anastasia is seeking to dispel. 

“What does blind look like?” she says. “You don’t have to look a certain way.”

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“I just want to bring more awareness about the blind and visually impaired… because when I’m old and have kids, I want my kids and all their friends to know what blindness is.”

“Any obstacle that comes my way, I know I can get through,” she says. “Geez, I lost a whole sense - and I’m still okay.”