Growing up means encountering everything for the first time. Adolescents and young adults move through life much like advancing through different levels in a video game; each new setting and challenge offers opportunities to learn and master additional skills. In life, as in video games, abilities are not infinite, but progress is possible. Ashley Hunter, a young adult living with Leber congenital amaurosis (LCA), has always found refuge in video games and knows firsthand the connection between playing them and facing life’s challenges.

Life Level One: Diagnosis

Early in life, Ashley’s symptoms were misdiagnosed as neuroblastoma. When her doctors observed nystagmus (roving eye movements), they then thought she might have a cancerous brain tumor. Finding out what was wrong was her first major life challenge. After three years of extensive testing, doctors determined that she didn’t have a tumor but instead had LCA.

Years later, when she was about 27, genetic testing revealed that Ashley had LCA caused by a mutation in the CRX gene, also known as LCA7. This form of LCA is often severe and has an early onset, resulting in significant visual impairment from infancy. It is usually inherited as an autosomal dominant trait, rather than the other LCA subtypes, which are recessive.

Looking back, Ashley and her mother can recall only certain emotions and the general outcome of the early years of testing. “At the time, it was just my mom and me…It was very stressful for her. I don’t really [remember] too much about it. When I ask my mom, she doesn’t really remember much either,” Ashley said. But they do recall that weathering this process was Ashley’s first step toward building resilience.

Life Level Two: Childhood

As a young child, Ashley quickly acquired skills. Living near Scottsdale, Arizona, her parents (mother and stepfather) discovered the Foundation for Blind Children (FBC). Through the FBC, as a preschooler, she began learning braille, started mobility and orientation training, and became comfortable with assistive technologies.  Ashley’s parents knew her vision limitations would be challenging, so they became proactive and supportive in her future endeavors.

In kindergarten, Ashley’s vision was limited, but she was still given a certain amount of independence. She wanted to play soccer with the rest of her classmates, and her parents encouraged her to try anything she was drawn to. “All I remember about playing soccer was being hit with the soccer ball many different times,” she recalled, laughing.

She quit soccer, but took on new challenges, later trying gymnastics and dance, among other childhood activities. Although none of them worked out in the long term, Ashley credits these early activities with teaching her what she was truly capable of.

Life Level Three: Middle and High School

Most video games feature levels that get harder as the player progresses. Life can follow a similar trajectory. Ashley recalled middle and high school as the first time she experienced significant hardships associated with her LCA. The unfortunate reality she had to face was that her vision would only continue to get worse, and seemingly in concert, kids around her got meaner. Though she was surrounded by good friends who understood her abilities and limitations, Ashley also encountered others who took advantage of them. For example, she used large-text textbooks at school, but some classmates hid them and laughed as she struggled to find them.  

Ashley attended a few middle school dances but missed out on those in high school. She was unable to participate in gym classes and had to find another option. Even mobility training outside of school became loathsome because of its close proximity to her high school.

Each of these problems was compounded by constant anxiety. There was the general anxiety that afflicts many teenagers, but also the dread of becoming blind. Despite all of the hurdles, Ashley persevered. She had friends to drive her to places she needed to go. She found weightlifting, a practice that strengthened her body and deepened her relationship with accessible exercise, and fell in love with music.  She began attending concerts by her favorite bands and even crowd-surfed, once making her way onto the stage. When she turned 16, she began working various retail jobs.

Through all of life’s hurdles and stresses, Ashley played video games, which became a lifeline for her. They were a bastion of comfort, yet they tested her abilities.

Life Level Four: Adulthood

Today, Ashley, now age 29,  lives in a small town in Missouri with her partner, Michael, where she is facing new life challenges. She reflected on shifting from big-city life to small-town living. Near Scottsdale, she found that people were more accustomed to seeing or interacting with people with visual impairments. However, her small-town experience was more challenging. For instance, at work, she has learned to deal with customers and coworkers who do not fully understand the difference between legal and total blindness.

“People hear the word blind or legally blind and assume it is just a black or white kind of thing,” Ashley said. “It can be frustrating. Especially when I’ve worked so hard my whole life to be where I am [with] my experience in retail and management, and it is often overlooked because of my visual impairment.”

Life Level Five: Video Gamer

The challenges Ashley faces have been made more difficult by the gradual decrease in her vision. She can no longer navigate independently outside, as bright light has made it more difficult to see, and her nystagmus and peripheral vision are worsening. While circumstances can stand in the way, Ashley won’t let them stop her. After all, she still is, and always has been, an avid video gamer, which provides a platform for her to rise to new challenges and perfect new skills.  

Ashley spends her time playing retro PlayStation 2 video games like Jak and Daxter and Crash Bandicoot, as well as more modern games like Fortnite, and has streamed her gaming on the popular streaming site Twitch. She’s found a sense of accomplishment in being a talented gamer despite her visual impairment. In fact, she’s found a community of visually impaired online gamers.

Video games are a huge part of her life. While Ashley knows it might not be something she can do forever, she takes full advantage of what she can do now. The games are more than an activity. They are, instead, demonstrations of her resilience and persistence.  While living with LCA can certainly present challenges, gaming has shown Ashley that it will never stop her from trying anything she sets her mind to. “I feel like my visual impairment and struggles have formed me into the person I am today,” Ashley said. “And I like that person! All of this has made me more resilient and adaptive.”