Paralympic gold- and bronze-medal-winning swimmer Anastasia Pagonis has never met an expectation she couldn’t defy or an obstacle she couldn’t obliterate. And Lord knows, she’s been tested. Only 19, her unique brand of grit, glory, and glam has earned her nearly 3 million social media followers. They may come for the jaw-dropping clips of her beating her own world record in the 400m freestyle at the 2020 Tokyo Games, but they stay for the irresistible TikToks showcasing her dark humor, “seggsy” dance moves, and stereotype-busting beauty hacks as a e.l.f. Cosmetics partner. Plot twist: Her videos are often filmed by her mom, because Pagonis is blind.
The Long Islander began losing her vision at age 11. It took years and several misdiagnoses before doctors determined she has autoimmune retinopathy, as well as a genetic disease, that would rob her of all usable vision by the time she turned 14. Adjusting to her new reality resulted in a period of deep depression that nearly swallowed her. She recovered with the help of her longtime therapist and her family, which includes her beloved guide dog, Radar. Going blind meant losing the life she knew but finding her purpose. “I think losing my vision has closed a lot of doors for me, but honestly it has opened even more,” she says.
A lifelong athlete, Pagonis says swimming offered her a much-needed sense of freedom and independence. But first she had to relearn how to do it without being able to see — a process that required her to shed blood, sweat, tears, and then more blood. “The first day I went back in the pool, I immediately knew this was going to be a long, hard road,” she recalls. “I couldn’t stay straight, smashed my face on the lane line, and had a gashed and bloody nose. And knowing when to turn at walls was definitely the most challenging.” She learned to work with a “tapper”: a coach or other trained adult who stands at the pool’s edge holding foam-covered rods, and taps Pagonis at the exact moment she’s approaching the wall. “My life is on the line,” she says of this partnership. “I’m swimming into a cement wall, so trust and precision are the most important to me.” One such unfortunate collision last fall resulted in a serious concussion that — along with recovering from an injury-related shoulder surgery — will keep her landlocked until December. (All this while the 2024 Paris Paralympics loom.)
Influencer life can be just as harrowing. She continues to endure a shocking daily onslaught of cyber bullying (the most common theme is strangers accusing her of faking her blindness). Still, none of it has discouraged her from sharing her story. “It’s really amazing for me to show other people that this is what you can do if you have a disability,” Pagonis says. “I’ve definitely gone through a lot in my 19 years. I’ve learned resilience very, very well.”
Below, Bustle chats with Pagonis about competition, ambition, and celebrating her support system.
What does swimming mean to you?
Swimming is my happy place. It’s where I feel most free. Obviously, I need people to help me, to make sure I’m not crashing into the wall, but [overall], it’s just me and the pool. I don’t need my guide dog, Radar. I don’t need my cane. I don’t need anything. It’s just me and the water.
How did you discover that you could be not just good at swimming, but exceptional at it?
I had a passion for swimming from the first moment I got in the water. I just had this connection with it. And then once I had my big vision drop at 14, it was really hard for me to get back in the pool. I felt that everything was kind of taken from me. When I decided to try it again, I wanted it to be something that made me happy the way it used to. And unfortunately, it was not the same. I had to really learn how to swim all over again. And it was very hard. Lots of bumps, bruises, cuts, broken bones, concussions. But I knew I had the opportunity to be amazing. And my family and I were going to do everything we could to get me there. Leading up to Tokyo, I was training at a pool that’s an hour from my house, so we had to wake up around 3:30 in the morning to get to practice by 5 a.m. And my parents drove me there every day, twice a day.
You hope to compete in Paris next year?
Yes. I’ve had a pretty hectic year. I got a concussion last November, and that kind of threw me for a loop. I am no longer working with the coach that I had leading up to Tokyo, which was a very hard situation. But I had to do it for my mental health. I got shoulder surgery, which I needed to do to be able to compete at the highest level. And they ended up needing to put five anchors all around my shoulder and cutting into my bicep.
I can get back in the pool in December, which is a long time away. Right now, I’m doing everything in my power to keep my body in shape. But it’s definitely mentally draining. We’re a year out from Paris, and I’m kind of freaking out! But it’s OK. We’re trying to keep cool over here. I’m just saying to myself, I’m going to come back even better.
You do have a track record of overcoming challenges.
Thank you. I’m very happy to have my support system because I don’t think I would be able to get through any of this without them. Obviously, it wasn’t just me who deserved those medals.
Who is in that support system?
My mom is my best friend, my ride or die. She will literally do anything to make sure everything is clear in my path. And my dad is amazing. He’s like the fun guy. He wants to make sure I’m having fun and that I’m doing everything that makes me happy.
And I have my therapist, who I’ve been working with since I lost my vision. And she’s honestly like a friend to me now. I adore her. My guide dog, Radar, has changed my life so much. I really didn’t have independence before him. I always had to rely on my parents helping me. But oh, my God, now I don’t have to hold my mom’s arm when I’m going through the mall or going to get Starbucks. It’s me and Radar. Although sometimes I do need someone who can read and speak. Not that Radar is not a genius, but you know.
I have all these people in my life that are really here for me and want to see me succeed. And then there’s obviously those people that are unfortunately no longer in your life, but it makes your life better now.
You’ve said that you lost friends when you went blind?
Yeah. It’s really sad, but I lost a lot of people in my life through my vision loss. When you’re different, kids want nothing to do with you. Actually I call my blindness — and I am so sorry for this — but I call it my *sshole repellent. It just got rid of all the bad people who, now looking back on it, honestly didn’t deserve to be in my life. At the time, it was super hard. But I’ve learned that you don’t need a lot of people; if you have a few good ones, that’s all that matters.
It took years to get the correct diagnosis, right?
Yes. I started losing my vision at 11. I don’t know if I was always visually impaired, because it was my normal. But at 11, my parents started noticing problems. And then at 14, I had the big drop in my vision. I was actually misdiagnosed twice. The hardest part for me was that I was initially told I wasn’t going to lose a lot of my vision; I was told I was only going to get to 20/400, which means still being able to read the eye chart. But that wasn’t the case. My body thinks my retinas are bad and attacks them. So, yeah. I was very blessed in the eye department.
I call my blindness — and I am so sorry for this — my *sshole repellent. It just got rid of all the bad people who didn’t deserve to be in my life.
Were you homeschooled after that? How did you do high school?
Yes. I was homeschooled, and I got Braille and technology training through my school district. I made it to first grade Braille. We’ll take it! But I’m very, very good with technology, which, honestly, in this generation, is more useful than Braille.
You have a substantial following on TikTok and Instagram. What’s your goal with social media?
My whole thing is breaking down stereotypes and changing the way you see the visually impaired. Because the world has this stereotype of blindness where you have to look a certain way, act a certain way, and be a certain way. I want to show people I can dress cute, I can do my own makeup, and I can be a professional athlete. I want to show people that this is what blindness is.
Photographs by Elena Mudd
Photo Director: Alex Pollack
Editor in Chief: Charlotte Owen
SVP Fashion: Tiffany Reid
SVP Creative: Karen Hibbert