Emily’s Story

Emily is from Flushing Queens, New York. She had always lived in New York, except when she wanted a change of scenery and lived in Boston from the age of 20 to 26. She thought Boston was a nice transition because it was similar to New York but different. And as a person who is visually impaired, she found it easy to get around public transit-wise. 

Emily thinks it was at the age of five when she received her first pair of glasses. Her eye doctor knew something was strange and decided to monitor it. When it seemed there was cause for concern; she was referred to a specialist. At the age of ten, she was diagnosed with Stargardt’s Disease, a genetic form of macular degeneration. The disease creates a blind spot in one’s field of vision. Stargardt’s Disease tends to move somewhat slower than other eye diseases, but her blind spot has increased.

Emily first came to Lighthouse Guild for services as a young teenager. She received a comprehensive low vision exam and special glasses. She later met with an orientation and mobility instructor who provided her with training to navigate her world. She loved orientation and mobility, and it was crucial for her as she was growing up. She loved learning helpful tips along the way, and that training was essential to her. Over the years, her condition has gotten progressively worse. Now in her late 20s, she is currently undergoing orientation and mobility training due to her changing vision.

When she was getting ready to attend college, Lighthouse Guild experts set up her laptop. They set her up with a lot of helpful equipment, such as her laptop and some low vision aid magnifiers and scanner textbooks. They provided her with the technology and instruction on how to use them. Emily was able to use these tools to pursue her education, including being trained as a cosmetologist.

Emily says, at Lighthouse Guild, it’s kind of like one-stop shopping by providing one with many different components of services, from the clinical and medical aspects of low vision and beyond, which includes the technology and special youth programs. Lighthouse Guild provides the needed physical equipment, but they also offer a sense of community. “Everyone I have made contact with at Lighthouse Guild has been friendly, personable, and you can tell they care about your wellbeing. I have nothing but positive things to say about Lighthouse Guild.”

Emily is an artist who needs to maximize her visual function, so a virtual reality headset and CCTVs were of particular interest. The CCTV system consists of an overhead camera that connects to a computer screen. “I brought a sketchbook and some pens and pencils, etc. I tried it out, and it is pretty revolutionary. I also have arthritis in my back, so being able to sit upright and to see what’s on the screen is also being displayed on the table is pretty impressive and an experience I’ve never had before. I took out some art, tried to play around with that, and could see the details much clearer with less strain on my eyes and the physical body.” She could flip the camera to show her face and put on her makeup. “That was a really cool feature.” This system would help her in her work: As an artist, “I either paint on canvas or people’s faces. This device is helpful to me with both.”

Emily says the Lighthouse Guild Technology Center shows people the options that are out there. Not everyone knows what options are available to them. She shares, “For example, I didn’t know that a lot of these different technology devices existed. So, the technology center opens the door to a lot of possibilities people may not have thought possible before.” 

Lighthouse Guild experts who train Emily on how to use the devices have always given her a big boost. “I could feel not only my own excitement but the excitement of those that I have interacted with, particularly in the technology department.” Inna Babaeva, an occupational therapist, is one specialist Emily has worked with. “You can really tell the excitement coming from her when she’s helping me,” she says of Inna. “It makes me happy when I feel and see her excitement. And that’s just fun.”