Finding Strength in the Face of Dual Sensory Loss

Jennifer’s journey began early, marked by challenges that few could see. From childhood, she struggled with vision and hearing issues that her family noticed but could not fully understand. Despite numerous doctor visits, no one could identify the cause. By age three, she was using hearing aids and glasses, navigating a world that felt increasingly distant.

In her late 20s, a visit to Northwest Eyecare in Oregon, Illinois, changed everything. Dr. Jessica Condie diagnosed her with Retinitis Pigmentosa, a genetic disorder causing gradual vision loss. This diagnosis ignited a spark within Jennifer. She began researching the connection between her vision and hearing challenges. When she learned about Usher Syndrome—a rare genetic condition that leads to both hearing and vision loss—she experienced a profound “Aha moment.” The diagnosis, while “overwhelming”, gave her a new sense of direction.

Referred to Spectrios Institute for specialized care, Jennifer met Dr. Williams, who reassured her, “There is so much you can do. You’re not done yet.” After years of doctors telling her there was nothing to be done, she felt relief to hear there were options.

Jennifer recognized her own tendencies to dismiss challenges, saying, “I can be stubborn. If I struggle to see something, I often just dismiss it.” Dr. Williams encouraged her to think differently, urging her to engage her memory and stay open to possibilities.

Navigating her dual sensory loss can be frustrating, particularly when others struggle to understand her experience. “A lot of people don’t get it,” she shared. “I’m still walking, using my phone.” Having her husband attend her appointments made a big difference. Dr. Williams’ support helped him grasp the reality of her challenges. Bridging this gap and giving him a deeper insight was helpful in her journey. 

Jennifer also worked with occupational therapist Katrina, who introduced her to tools like tinted screen clips and specialized keyboards. They explored mobility options and strategies to enhance her daily life despite her vision loss.

Though the pain of losing her sight and hearing is profound, Jennifer remains determined. This past April, she made the difficult decision to give up driving. “Being independent, losing that freedom forced me to rely on others,” she said. “As hard as it is, you must know when to let go.” Everyday tasks like grocery shopping and dining out became increasingly challenging, especially in dimly lit restaurants.

For years, Jennifer managed her family’s tree service, but as her vision deteriorated, she reevaluated her role. Coping became about staying engaged, so when her crew found baby squirrels and raccoons, they brought them to her for rehabilitation. “I started caring for them until they were old enough to be released,” she explained. Now, as feeding the animals becomes more difficult, she’s pivoting her focus to a new goal: reading the Bible from cover to cover with the help of an accessibility app. “Set small goals,” she advised. “You have to find something to cling to. Search for joy and strive for something meaningful.”

Jennifer, now near 40, is adapting to her new reality. She uses a cane, and her husband and daughter are always ready to offer their arms for support. With the help of apps that magnify text and read aloud, she continues to enjoy reading and dining out with family and friends. Jennifer is her own advocate and inspires others to do the same, believing that our spirit and determination—not our condition—define who we are.

At Spectrios, we embrace this philosophy through our “head, heart, and eye” approach. By focusing on the whole person and working alongside the medical team to manage vision loss, we bring hope. We empower people to reach their rehabilitation goals, live independently, and uplift others, staying active in their communities despite visual challenges. We’re inspired by Jennifer’s outlook on life, which she says keeps her moving forward: “I have that attitude, like… you’re gonna try to keep me down? Oh, yeah? Watch me.” Her words remind us all of the power of resilience and strength—that our spirit can shine, even in the toughest moments.

We would love to help you meet your low vision rehabilitation goals and live your life to the fullest. Just like Jennifer. Call 630-690-7115 to make an appointment with our comprehensive team and take the first step toward renewed hope and independence!