Swimming in a pool noisy with splashes, Anastasia Pagonis looks like any other girl at practice: hair in a topknot beneath a white swim cap, iridescent goggles strapped on, neon snorkel up. But what she sees is different.
Pagonis, 14, who swims on the U.S. Paralympics Swimming Emerging Team, sees only peripherally. Put an apple an inch in front of one eye and close the other — that is how Pagonis sees.
“If you see the lane line, it goes different colors and then a bold color,” she said, gesturing toward a pool at the Nassau County Aquatic Center in East Meadow on a recent weeknight. “So, right when it goes bold, I know I have four strokes and then I flip” — turning to swim in the opposite direction.
When Pagonis, of Garden City, started taking swimming lessons at 11, she could see straight ahead. In a span of several months, she progressively lost her central vision to Stargardt disease, a genetic disorder that causes macular degeneration. According to the National Eye Institute, an estimated 1 in 8,000 to 10,000 people have the disease, which usually presents itself during childhood or adolescence.
“She’ll fall down the stairs, oh my goodness, like 30 times a day,” said her mother, Stacey Pagonis. “And you hear the stairs, ‘Boom!’ And then you hear, ‘I’m OK!’ ”
Graceful in pool
Despite saying that she has “smashed into a wall” more than once, Tas, as she’s known to friends and family, appears anything but clumsy in the pool. She is a strong swimmer, with power and purpose behind each stroke.
Before Anastasia joined the Long Island Aquatic Club, Keith Green, a retired New York City firefighter who has been coaching swimming for more than 20 years, had not taught a swimmer with a disability.
“Even kids without a disability, we’re constantly modifying what we do, how they work, based on their age, their ability, so it’s a never-ending process,” Green said. “It’s just an extra step that we need to take with Tas.”
With Anastasia, Green said, he emphasizes communication. For instance, he is careful to help her when an explanation involves a visual element.
She and her coach and teammates have developed systems to prevent accidents. During drills, for example, the teammate behind Anastasia will keep an eye on the pace clock for her and tell her when to start swimming. Her teammates at the club, none of whom has a physical disability, treat her the same way they do one another, she said — “but they give me what I need.”
Unlike the Special Olympics, which invites competitors at any level with intellectual disabilities, the Paralympics is open only to elite athletes with physical disabilities and is part of the U.S. Olympic Committee. Athletes must swim a qualifying time to make the A, B, or Emerging Paralympic teams. Anastasia is on the Emerging team, which requires a time within 15 percent of that for the A team; Emerging swimmers must qualify yearly. Swimmers on the A and B teams qualify every six months.
Anastasia swims multiple events and is expected to challenge several U.S. Paralympic records this year, according to Green. “You’re paralleling the Olympics,” said Queenie Nichols, the Colorado-based director for U.S. Paralympic Swimming. “It’s difficult; you have to be an elite athlete.”
Usually, swimmers on the Paralympic team have been training for many years in a club “probably with able-bodied swimmers — because that’s what’s going to push you,” Nichols said.
For a swimmer with a visual impairment, Nichols said, the challenge is often the lack of visual reference.
“They don’t get to look over and see how everybody else swims,” Nichols said. “You have to find a way to help them understand where to put their body and where to move their hand and that kind of thing.” Nichols said she sees promise in Anastasia, who is “an extremely hard worker.”
Anastasia and Green attended their first Paralympics meet together in Charlotte, North Carolina, last December. She left with two gold medals and a spot on Team USA. In May, she traveled to Italy to compete for the team in the World Series, returning with silver and bronze medals.
“It was really a life-altering experience for me, you know, seeing what these swimmers do on a daily basis, just getting through life,” Green said of the first meet. “Forget about swimming — just getting through life.”
On Monday, they leave for the Olympic training center in Colorado to prepare with the team for the U.S. Paralympics National Championships in Arizona in December.
When the Pagonis family — Anastasia, her brother, Eli, and their parents, Stacey and Peter — found out about Stargardt, Stacey tried to find a solution. “I was the mom, and I was going to fix everything, so I took her to doctors all over our country,” she said. But “they were just doing research on her — because there was no cure.”
Eli said it was “heartbreaking” to watch his sister’s vision disappear. The two could no longer do something as simple as watch television together. At first, Anastasia herself was sad all the time, she said. “I was just like, ‘Why me?’ ” she said. “But like now, it’s fine, live with it, it’s OK.”
Anastasia’s visual impairment has prompted her to develop workarounds for daily life. She has perfected looking directly at people in conversation, although to see the other person she would have to take her gaze over the top of their heads or to either side. She uses iPhone apps to read menus and identify products while grocery shopping. She enlarges text messages or has the phone speak them to her.
Anastasia is home-schooled, but not because of her vision. Stacey chose to home-school Anastasia and her brother, now a freshman on full scholarship at Adelphi University, for religious reasons, long before Stargardt entered their lives.
Swimming replaced soccer at a doctor’s suggestion soon after her vision began to deteriorate. Anastasia attends eight practices a week, plus strength and conditioning sessions. In the water, Stacey said, Anastasia has her freedom, excelling in particular at butterfly and freestyle.
“I can do everything that anyone else can do,” Anastasia said with a smile, just “a little bit different.”