We usually share an interview with a patient. Kate was a speaker at our Gala. Her words were so powerful, we decided to give this space to her. Thank you Kate for sharing your story.
I have always been an avid reader. When I was a child, I brought books with me everywhere, I even had a copy of Black Beauty that was small enough for my coat pocket. That was my recess book. In high school, I would check out a book in the morning and sprint to the library at the end of the day to return it and grab a new one for the bus ride home. I devoured books reading was one of the ways I defined my life. So you can imagine how frightening it was when two years, into my graduate studies, I suddenly couldn’t read. Not only were the words too small, but focusing on them was physically painful, an ache in my eyes that radiated to my head before finally creating shooting pains across my body. This was the first sign that my eyes and life were changing.
I was terrified. My eye doctor told me that my eyes were aging prematurely because of the stress of two congenital eye defects called nystagmus (a constant shaking of the eyes) and strabismus (lazy eyes). These are conditions that I had already had three surgeries across my childhood to try to correct. Surgeries make sense to me, cut under the eye, twist a muscle or two, relieve some of the stress of trying to focus my constantly shaking eyes. But surgeries can’t fix this new problem, that my brain and eyes aren’t in sync, that it’s now difficult and painful to try to focus. My doctor prescribed me trifocal glasses with light bending prisms, and said, “you’ll be in a lot less pain when you stop this excessive reading and writing.” Which, for me, is a lot like saying, “you’ll be in a lot less pain when you stop this excessive breathing.”
The trifocals and prisms helped, but I was still in crisis. Light became painful, I started tripping and falling, and worst of all, I still couldn’t read. I dropped out of the classes I was in because I couldn’t bear the aching pain of trying to complete the homework. That’s when I remembered the brochure for Spectrios that my doctor gave me. To be very honest, I was not optimistic about what Spectrios could do for me. In other areas of my life I was having a hard time convincing people that I needed help, even as my education and career were crumbling around me. In my heart, I knew I wanted to start using a cane, but I wasn’t sure that I would be able to convince someone that it was necessary.
I could not have been more wrong. I described the pain and difficulties that I was having to Dr. Rachel Park, and she worked with me to pick colored filters to block out harmful wavelengths of light. She took the time to try all different kinds of colors with me, and actually explained the science behind what each filter does and what kinds of disorders they help with. I also met with Katrina Stratton, an occupational therapist, who showed me technology to magnify and enhance the contrast of my Ancient Greek textbooks and my students’ Latin quizzes. I admitted to her that what I was most afraid of was not being understood or taken seriously. Katrina told me that Spectrios was here to help me find and use anything that could make my life easier. Before I could even ask for a cane, Katrina offered me one, and gave me some basic instructions. Together, we went through every kind of difficulty I was having and came up with solutions to make my days and my pain more manageable.
Because of the amazing staff at Spectrios I have been connected to government resources in Wisconsin, I’ve completed Orientation and Mobility training, and I’ve been able to continue in my degree program. I’ve also learned how to use my experience with low vision as an asset in my teaching and in my advocacy for other disabled students. Recently I’ve started a position at the Wisconsin State Historical Museum, part of which involves creating resources for visually impaired students. Most importantly, with the technology Katrina recommended, I can finally read again. I cannot emphasize enough how valuable the work that Spectrios does is. I entered that little yellow house thinking they might give me a magnifying glass and send me on my way. Instead, they gave me my life back.