Remarkable Insights: Three Young Adults Flourish Despite Fading Eyesight

When she was in the 7th grade, Brooke James was determined to play soccer in the Junior Olympics. "I was so ready to go all the way," she says. But a diagnosis of Stargardt disease, and the progressive loss of her central vision, wiped out her dream of being a soccer champion.

When Jason Soriano was 12 years old, he fell off a 12-foot bunker during a night hike at summer camp. Later that same evening, he stumbled into a campfire. Those fateful missteps werea strongindication thatJason had a problem seeing in the dark. Shortly thereafter, he was diagnosed with retinitis pigmentosa (RP) - a condition which usually begins as night blindness, and often progresses to loss of peripheral vision and blindness.

Though Elizabeth Lea was just five when she was diagnosed with RP, the implications of her vision impairment didn't really hit home until she learned she couldn't fulfill every teenager's biggest dream - getting a driver's license.

Whether it's acne, braces, cracking voices, facial hair, or the desire to be popular, cool, and independent, the journey into adulthood is usually filled with a combination of insidious afflictions. The poet John Ciardi said, "You don't have to suffer to be a poet; adolescence is enough suffering for anyone."

Imagine trying to navigate your teenage years with a vision-robbing eye disease.

Not only did Brooke, Jason, and Elizabeth survive adolescence, they're entering adulthood with the strength in character and self-awareness that many "grown-ups" would feel fortunate to achieve.

Here are their stories.

Brooke James

Brooke and her family had just moved to St. Louis from Columbia, Missouri, when she was diagnosed. She had braces then. For a year, she went to bed at night with the fear that she would wake up blind.

There were social challenges, too, like walking into school in the morning, and not being able to recognize her friends. Or in high school, waiting at the bus stop with younger kids, because she wasn't able to drive. "I felt like such a loser. It was such a pride issue," Brooke laments.

But giving up athletics was her biggest loss early on. "In high school, athletics was so important. The team camaraderie - it was so tough for me to give that up. I felt so lonely and isolated," she says.

Brooke credits her dad, and the fact that he'd already dealt with her older sisters' diagnoses, with helping to push her forward. He didn't give her much time to grieve. She uses words like "unstoppable" to characterize his desire to move her past her vision loss.

In junior high and high school, Brooke was able to succeed relatively easily, because the schools had already figured out how to accommodate her older sisters. And, she could still read with a small magnifying glass. "It was frustrating, but I was willing to put in the extra time," she says.

To cope with a growing number of social and logistical issues, Brooke decided early on to be open about her visual problems. She says, "If you want to make life easier, you let everybody know."

And Brooke found a number of activities for enjoyment and fulfillment. She found art to be very therapeutic. She became known as the "Super Fan," sitting in the front row with her binoculars at numerous school sporting events. Playing squash became a favorite pastime, because it was an athletic activity in a well-contained environment - it didn't demand as much visually as team sports on large playing fields. She was even president of her high school Honor Counsel, a student-run organization for dealing with student policy and disciplinary issues.

For Brooke, dating wasn't much of a problem, because so many people knew about her vision loss, and most were supportive. She also dated a very understanding and accommodating guy for three years. "He was like my right-hand man," Brooke says. "We had a system and language worked out, and that was amazing."

With fading eyesight, and a whole new environment to deal with, college has been much harder than high school for Brooke. "I had to tell more than a 100 people about my disability that first year - it wore on me for a while. Living in another town was tough, as well," she recalls.

Brooke can no longer read mostprint, but she's learned Braille, and listens to books on tape. The administration and her friends at Bowdoin are also very helpful. She founded an organization called Students with Disabilities on campus to ensure that accommodations are made for her and other students with special requirements.

With graduation just around the corner, Brooke has some ambitious goals - like joining the Peace Corps. "I have a passion for community service and helping people I've never met," she says. "Though I've been dealt a bad hand, it's been in a wonderful environment. I want to give back."

But Brooke is also reluctant to plan too far ahead. She says, "My parents' motto for me was not to worry about the long run - you just have to take it one day at a time. If you worry about the future, you are going to be afraid constantly. Just surround yourself with loving, supportive people. Things could be so much worse."

Whatever the future brings, Brooke offers this final note of humility for daily living with vision loss, "If you can't laugh at the stupid things you do because of your disability, it is going to hurt you so much more."

Jason Soriano

Thus far, night blindness has been Jason's biggest issue. It came into play during nighttime soccer games and theater performances when he was in high school. "It was very disorienting, walking through the wrong door in the middle of a play - there were some live performances where there were five or six second pauses, because I was running into things trying to get to across the stage."

Darkened venues such as movie theaters and parties have also presented challenges. Jason recalls a couple of instances in which he was at parties in college, in darkened settings where alcohol was served, and he accidentally bumped into people. "If someone hadn't intervened, and explained what was going on, I might have gotten into a fight," he says.

Jason says that dating can be a little tricky with progressive vision loss, "It's really not a first-date opener," he says. "It's frustrating to have them look at you differently after you tell them. With this disease, you are going to have to find someone who understands what you are going through."

Though Jason likes to use his bicycle as his primary mode of transportation across the large Madison campus, his inability to see well at night is making that more and more challenging. "There's been some hairy instances," he admits. But Jason is not very enthusiastic about other options for commuting - walking for a couple of miles or taking a bus.

Getting off-campus is even more difficult. Though Jason usually takes a cab to get where he needs to go, that method of commuting is less desirable, especially if it is for getting to a regular destination such as a job.

Fortunately, RP has yet to significantly impact Jason's school work. He can still read books and computer screens, though taking notes in a darkened classroom (e.g., during a movie) can be difficult.

Jason writes for a couple of the school newspapers, as well as the magazine Northwest Quarterly, which is produced out of his hometown of Rockford, Illinois. Though he is looking forward to a career as a journalist, law enforcement and/or military service were originally his first choices, but RP makes those much less feasible. "In high school, I switched my focus to writing, because I've always been a decent writer," Jason says. "Late-night assignments have been difficult. In any type of profession I choose, I'm going to find difficulties."

Beyond a career as a journalist, Jason isn't trying to look too far into the future, despite the fact that RP will likely have a greater impact on him over time. "I'm enjoying where I am now, and I am trying to find what I love in life, and from there I'll address the problems as they come up," he says. "You have to plan around the disease, and work with it, but you can't let it control you."

Jason says that he has adopted his mom's attitude: "It could be a lot worse." He adds, "It's tempting sometimes to feel sorry for yourself, but be happy with what you've got and enjoy it one day at a time."

Elizabeth Lea

For Elizabeth, asserting her independence has helped her deal successfully with RP. In 10th grade, she chose to go to boarding school, which she says "was completely due to the fact that I couldn't drive and wanted to be independent. I didn't like the idea initially, because my perception was that was where you sent kids who were bad. My parents gave me a video of a school to watch, and after I saw it, I said, "That's where I want to go." Boarding school was a great solution. No one there had cars. It was a very small school and very easy to get around. By the end of my first year there, everyone knew about my disability. If I stumbled into something, no one made fun of me."

When it comes to her academic success, Elizabeth gives a lot of credit to both her parents and her teachers. She is especially grateful to her parents who fought for her to be in advanced classes whenever possible. They made sure that if she wasn't doing well, teachers understood that it was likely because she was having trouble seeing the board or something visual. And though Elizabeth could read, it took considerably more time for her to complete her assignments. She admits that she didn't realize that there were many supportive services available to her.

Elizabeth acknowledges that her vision loss and night blindness has created some social challenges. The fact that she wasn't good in sports in high school due to poor eyesight was a strike against her. Social situations got tougher in college, because her eyesight got much worse, and there were many parties and gatherings at night. "People thought I was drunk, because I would run into things, and I couldn't put a face to a name. It was embarrassing. It made it difficult to make friends...and I can't really go out by myself," she says. "But my roommates have been incredibly supportive."

Dating had its complications, too, Elizabeth recalls. "You didn't want to tell a guy first thing that you've got a visual disability. It's not a turn on, right? I never told a guy if I thought I was going to get a bad reaction." There were also occasions when she would meet a new guy at a party, but had little idea what they looked like. The good news is that Elizabeth has reunited with her high school boyfriend, and he has been incredibly supportive.

Despite deteriorating eyesight in college, Elizabeth continued to find ways to be active and independent. She joined the crew team and performed community service. She often relies on public transportation to get where she needs to be.

Elizabeth looks at her upcoming move to Charlotte, her home town, with excitement, but also, slight disappointment. The city has good public transportation, and there are many apartments and condominiums within walking distance of Wachovia. However, the move to the city is somewhat of a consolation; she's always dreamed of living out in the country. Unfortunately, RP makes that less practical.

When Elizabeth considers her career beyond Wachovia, she's very interested in doing something that can benefit rural America. In fact, her undergraduate thesis at Princeton is titled: The Role of Education in Rural Economic Development. "My heart bleeds for rural America," says Elizabeth. "They're forgotten."

In reflecting on her personal achievements and challenges as a teen and young adult with RP, Elizabeth offers the following thoughts to others who might be growing up with vision impairment: "Be relaxed about it. Be willing to talk with people who have questions. Don't let anybody baby you and tell you this is debilitating."