Before she dove into Oneida Lake to compete in the Syracuse Athleta Iron Girl Triathlon, Erin Scala read the essay she wrote for the “Power to the She” award. The accolade is granted to one woman per triathlon who has a powerful, moving story.
Scala read to the crowd: “If I had to offer a piece of advice, it would be that life is way too short, whether you are fully sighted or blind. Live life to the fullest, do what makes you happy, and never let anyone tell you that you cannot do something.” When she finished, the starting gun shot off, and Scala was on her way to completing her first triathlon.
Born with retinitis pigmentosa—RP for short—Scala is legally blind at age 30. RP is a disease that targets the retina and can eventually lead to total blindness. It is hereditary and affects males and females equally. According to Ben Shaberman, Director of Science Communications at the Foundation Fighting Blindness, there are about 100,000 people in the U.S. with RP. Being one of them has forced Scala to go about her life differently. Although her cane illuminates her blindness during her daily routine, in sports without it, she is simply an athlete.
Scala’s parents started noticing unusual behaviors when she was 4 years old. Scala would trip over a pair of sneakers that stood out against their Kelly green rug. Her eyes wouldn’t focus when someone would toss her a ball. When dusk would fall, she would reach for her parents’ hands in need of guidance and security. Scala's parents knew this behavior wasn’t typical—4-year-old children usually want to be independent. After talking to her doctor and several eye specialists, she was diagnosed with RP.
“We were frustrated, and we didn’t know what to do," Scala’s father John says. One of our children has something that we didn’t know what it was and if it was going to cause her to go blind.” They immediately reached out to organizations and found relief after talking to Foundation Fighting Blindness, where Shaberman works.
According to Shaberman, RP causes progressive degeneration of the rods and cones in the retina. The retina is a thin piece of neural tissue that lines the back of the eye. When light enters the eye, it hits the rods and cones, which convert the light to signals that are sent back to the brain, creating vision.
People usually notice symptoms of RP when the child is in elementary or middle school. The most common symptoms are loss of night and peripheral vision, which Scala’s parents noticed. Peripheral vision is the first to ebb.
“Over time, the person’s vision becomes constricted more and more. It gets to the point where it can be like looking through a straw or even a pinhole,” Shaberman says.
Having always been an athlete, Scala grew up playing several sports including soccer. Although she had not completely lost her vision, night games were a struggle for her. Her soccer coach usually picked her to take the corner kicks during the game because of her accurate shots, but as the sun began to fall during one of her games, Scala chose to remove herself from the game instead of taking the shot.
“It broke my heart because she was taking herself out of the game because it was getting dark, and she couldn’t see. This kid just wanted to play soccer like everybody else,” John says. Scala didn’t want to chance running into another player and injuring someone.
Scala is legally blind now. People with RP usually lose their vision completely by age 40, according to Shaberman. Scala can see light and dark and occasionally random movements. Since she was not born blind, Scala can still remember what objects and colors look like.
“It’s funny, I always tell my parents and my family, ‘You look like you did 15 years ago because in my head you don’t age,’” Scala says. “I wouldn’t say it’s fun, but you have to look on the bright side and embrace the experience you had.”
Ten years ago, Scala hopped back on a bicycle for the first time without her vision. She rides on the back of a tandem bicycle, while a guide rides on the front and steers.
Scala didn’t want to give up anything she could do before she lost her sight—it’s what motivated her to start riding.
“I wanted to do those things and be as independent as possible, but still get exercise and be healthy,” Scala says.
According to the National Organization on Disability, people with a disability feel 27 percent less satisfied with their lives than those without a disability. The effects of physical inactivity include an increase in the severity of a disability and a decrease in community involvement, according to the Centers for Disease Control and Prevention. Several adaptive sports organizations in Massachusetts found engaging in athletics resulted in an 83 to 85 percent increase in mood. Sports also improved self-confidence and motivation.
The local Lions Club in Baldwinsville gave Scala the first tandem bike she rode with John. However, the bike could not keep up with the miles that she was capable of putting on it. With the help of two riders—Mary Jo, who guides Scala and Miles Ross, who works at The Bikery bicycle shop—Scala now has two tandem bikes fit for her athletic abilities. Mary Jo had a sister who was blind and hard of hearing. Her sister was an accomplished cyclist who competed in the Paralympic Games. After Mary Jo’s sister died after an accident, she gave the bicycle to Scala.
Ross, whom Scala describes as a second father, rides with her. He has been cycling his entire life and decided to try riding tandem with Scala after he noticed that she needed a partner whose skills matched her own.
“The first time that we went out scared the hell out of me. She was not a very good rider,” Ross says. With tandem pairs, the sighted person usually gives cues to their partner like when they are going to shift gears. This pair realized very quickly that they could sense each other’s movements without saying a word. The only time that Ross needs to cue Scala verbally is when they are taking a sharp turn.
“I learned more positive things about her blindness and awareness and that I don’t have to do more than normal to cue her.” Ross explains that because Scala cannot see, she doesn’t see the potential for accidents such as cars pulling out or objects that are obstructing their path, and therefore she will not react in a way that could leave the bike spinning out of control.
Scala wanted to push her boundaries further than riding tandem. One day, she urged Ross to help her ride a bicycle on her own. “I always like trying new things and pushing the limit and trying to outdo myself,” Scala says.
Ross suited up in his riding gear and helmet and tried to ride next to Scala. They quickly realized it was too difficult for her to take cues from Ross while he was riding. Ross ditched his bike and ran next to her, instead, yelling signals.
“You can imagine the sight in her neighborhood. Here’s the blind girl everyone knows and the idiot with the helmet running next to her,” Ross says. Scala rode two blocks by herself.
With cycling comes an involved community. Scala rides weekly with a group called Stop and Sip. The 30 riders cycle for about 30 miles and then reward themselves with burgers and beer. Scala says that while some people are close-minded to the idea of tandem biking, many are willing to give it a try. “It’s another person to talk to. It can be good or bad depending on who the person is,” Scala laughs.
As her cycling escalated to more than just a social experience, Scala went to the Olympic Training Center in Colorado Springs. She stood out among the riders and was invited to another camp at the Olympic Training Center in Ohio. “At this camp, I was told that I could only focus on cycling and literally live, breathe, and only cycle,” Scala says.
She turned down the opportunity to train and possibly compete in the Rio Paralympic Games because of her passion for all sports. “It might not make sense, but I felt that not pursuing this was in my best interest as a person and for my well-being and for my personal life. I love cycling, but not to the point of killing myself to do it and giving up things that I love the most.”
Scala also pushes herself to compete in triathlons. In 2012, she competed in the Syracuse Athleta Iron Girl Triathlon. She trained every Wednesday for two hours with the CNY Tri-Group at Jamesville Beach.
Her triathlon began with the swimming portion in Oneida Lake after she finished reading her “Power to the She” award essay. Scala and her guide were bungee-corded together so that Scala could navigate the course. Other athletes didn’t understand why the pair was bound together, so some tried to swim through the 4-foot gap between the two athletes. The two rode the tandem bicycle next and then ran the final third of the race. Scala and her guide each held on to a 2-foot tether. “Wherever they go, I go. It stinks for them, though, because they always have to look out for two people. I have the easy part,” Scala says.
Scala finished 190 out of 2,000 athletes. She was the only athlete with a disability. After crossing the finish line, many people questioned Scala about the bungee cord, the tandem bicycle, and the tether used for running. People didn’t understand why she was using the tools, she says, but she was happy to explain and share her story.
“Going through the finish line was absolutely incredible,” Scala says. “It was a sense of accomplishment that I trained for so long and so hard and gave it my very best. I had the biggest smile on my face, and I felt proud—not just proud of myself but proud of my guide and I for accomplishing the triathlon together as a team.”
By Michaela Quigley | Photo by Jussara Potter | Jerk October 2016 Issue