Editors Note: Student Stories is a project designed to showcase stories, events, clubs, and opinions authored by students in Santa Cruz County. This is offered through our Lookout in the Classroom program where students receive free access to all of our content as well as workshops and curriculum for local educators. Learn more here.
Every 4 to 17 per 100,000 people—approximately 400,000 people worldwide—live with Usher syndrome. As a 17-year-old junior at Soquel High School in Capitola, California, I am one of them. Like any other student, I have my whole life ahead of me, and I’m determined to use the unique challenges of living with this condition to fuel my growth and achieve my goals. While my long-term path isn’t entirely clear yet, I know my immediate mission is to advocate and raise awareness for individuals who need additional support to succeed. This passion stems directly from my own experience navigating high school life with Usher syndrome.
Even though I know I want to advocate now, that realization wasn’t initially clear. It took a lot of rough times and figuring things out. As I got older, the effects of Usher syndrome began affecting my daily life. I would stumble and trip over obstacles in my path because I couldn’t see them. Trying to manage the normal social and academic pressures of high school is already difficult, but having a disability like Usher syndrome brings the stress to another level. Knowing I am the only person in my school, and likely the entire county, with this condition makes me feel totally isolated and sometimes can lead to depressing thoughts about what the future may hold for me. For example, in 10 years will my vision be the same? Will I still be able to hear? Will I be able to function in society? How will I get around? Will my peers ever understand who I really am?
Even now, I don’t think I’ve fully processed or fully understand the long-term impact Usher syndrome will have on my life. It’s a constant, evolving realization that will continue to shift as I get older. In a strange way, I’ve realized that if I had never received the diagnosis, I might not have noticed the difference for a long time. While my visual struggles would have eventually become obvious, the reality is that the way I experience the world has always been my normal. I can’t know how others perceive things, just as they can’t know my perspective.
My older sister actually has Usher syndrome, too, which despite making sense that two siblings would have the same condition, Usher syndrome itself is quite rare. The chance of inheriting the recessive gene is 25% for each child and the odds of two siblings sharing the condition is a really low 6.25%. However, though my sister may have the same condition as me, it is quite different. She was born with hearing loss that continues to progress, while I have not experienced hearing loss yet. And ironically, her vision has progressed slower than mine. Being able to live with someone who also has this condition and share experiences has made me feel profoundly grateful and appreciative. Because of her, I can confidently say that I am not alone.
Living with this condition means navigating a world that isn’t built for me. My vision loss affects more than what I can see, it shapes where I can go and what I can participate in. Things most students take for granted, like walking through dim hallways, sitting in a darkened classroom, or going to school events, can become anxiety-provoking and feel unsafe. Even when I push myself to go, the anxiety of moving through uncertainty can feel isolating. These are invisible challenges only I can see, that separate me from others that do these things free of anxiety. Most people never notice how much effort it takes for me to do something they do without thinking.
While my early years of living with Usher syndrome were defined by isolation, I have begun to meet others like me and this has led to finding my voice. Finding my voice didn’t erase those barriers, it just gave me a way to name them. Living with this condition is like navigating a maze in the dark with earplugs in, while everyone else walked through with the lights on and a map in hand. I would stumble into walls and miss turns no one else even noticed. And when I asked for help, people would say, ‘Just open your eyes,’ not realizing my darkness isn’t something I can switch off. That loneliness, however, has created a powerful direction. As my journey has progressed, I have become passionate about raising awareness for accessibility and equity in the educational system and also advocating for myself. I recently went to my first USH Connections Conference and had my portrait taken for the Usher Syndrome Society’s Shine a Light on Usher Syndrome campaign. As I look ahead, I know the path will be difficult, but I believe that with each step that I take, with each challenge I face, I will define the person I become.
Americo is a student at Soquel High School