Shannon’s Story

From early childhood, Shannon grappled with poor vision; she says, “[I was] one of those kids with the thick glasses. I would pay to compress my lenses.” In her mid-30s, a friend recommended an ophthalmologist who detected anomalies in her retina, initiating a series of annual visits to a dedicated retina specialist.

It was in Shannon’s mid-40s when life took an unexpected turn when she was diagnosed with breast cancer during her pursuit of a master’s in nursing. While in treatment, her routine retina checkups fell by the wayside. Post-recovery, she noticed a shift in her vision, prompting a return to the retinal specialist. 

Shannon has myopic foveoschisis, a form of macular degeneration that is not age-related, where the retina is stretched and distorted, impacting its typical structure and function. Guided by her husband’s recommendation of a practice, one retinal specialist recommended surgery. In 2018, Shannon underwent surgery on her right eye, which, while stabilizing the situation, failed to improve her vision. Shannon shares, “I can’t read out of my right eye, the condition never went away, and I also developed a permanent obstruction in my eye.”

Connecting to Lighthouse Guild

Shannon’s eyes became a constant source of discomfort, marked by swollen glands and the regular use of eye drops. Seeking relief, she turned to a dry eye specialist recommended by Lighthouse Guild’s Low Vision Specialist, Dr. Andrea Zimmerman. Shannon says, “Dr. Zimmerman was able to look at the structure of the retina, that sealed the deal to prove that I had low vision.” 

“I was able to get Access-A-Ride, got reading and distance glasses at Lighthouse Guild, and met with [Accessible Technology Specialist] Cheryl Chung for technology training, who taught me how to really use the computer [such as selecting] high contrast mode, changing the screen, cut down on the glare, and that really was transformative,” Shannon says. 

Working with Lighthouse Guild’s Orientation and Mobility and Vision Rehabilitation Therapist Jeff Ambury, Shannon received a home assessment and got different tools to help her cook safely. She says Jeff helped her with transportation, like instructing her on how to use the subways and navigate the street. She says he taught her how to get around with diminished vision properly and made her realize some things she must stop doing to be safe. She uses buses often and subway stations with elevators or escalators. She also uses magnifiers and pocket magnifiers a lot and incorporating colorized lenses into her routine has helped combat glare and brightness.

Shannon says, “Lighthouse Guild helped me realize that even though my vision wasn’t going to get better, they helped me accept that this is my life and how I can function at my highest potential.” 

Active participation in a support group comprised of fellow nurses like herself, led by Social Worker Tamara Greeley, fostered a sense of connection. The group became a space for self-reflection, aiding Shannon in accepting the slower pace of her life. Eager to engage further, she aspires to join a professional group for working individuals, explore adaptive vision technologies at Lighthouse Guild, and contribute as a medical scribe.

Shannon says, “I have to start changing certain things to adapt to my low vision in my job and how I work with my clients. I always disclose my vision [condition] to my clients and students.”

Advocating for Accessibility

Shannon’s journey underscores the pressing need for societal improvements in accessibility for individuals with disabilities. She shares, “I recognize that I am extremely fortunate that I have this flexibility that I can go to work… [As] a society, we have to do better to make things more accessible for people with disabilities.”