My name is Kendra, I’m 23, and I’ll be finishing college this year with a degree in secondary education with a math specialization. Next year, I’ll be in the classroom, teaching middle and high schoolers about algebra. While I’m sure that doesn’t sound like fun to most, I’ve always loved math and robotics, and I love kids, which I found out while coaching at a local youth robotics team.
While my life is on track now, it wasn’t always. When I was in middle school, I began to have trouble seeing people’s faces and the whiteboard at school. I tried to hide my problems seeing for as long as I could. Then when I was in eighth grade, Ms. Begay, my math teacher, spoke to my mother and told her she thought I might have trouble seeing. My mom took me to one eye doctor after another. Eventually we found out I have Stargardt’s, a rare vision problem. It makes it hard for me to see things in the center of my vision where most people see detail. It was tough news to swallow, but my family and I were grateful to learn that I wouldn’t become totally blind.
Life changed in many ways for me once I found out I had Stargardt’s. There is little traffic where I live, so many kids ride their bicycles and skateboards. My mom and dad thought it would be okay for me to ride alone, but I found that I no longer had the confidence, and I preferred going with my brothers or sister instead.
Like many young people, I had to make the choice to stay home in our rural area or move away to go to college. Unlike most young people, however, my vision problem made my decision significantly harder. My family is really important to me, and I love to spend time with them. But, if I stayed home, it would be hard for me to get places on my own. There is a limited bus system that goes from town to town, but since I had to get to the center of town to use it, I didn’t see it being much help.
With many tearful good-byes, I packed up to go to college. When I got there, though, I was surprised at just how difficult it was to get around. I didn’t know the area, and coming from a rural area, the large number of people was frightening to me. I had brought my bike with me but maneuvering around hundreds of people while not knowing where I was going struck me as a poor idea. Once the campus grew more familiar, however, I started riding my bike more and more often, and even began going places off campus on my own two wheels. Over time I became more used to having Stargardt’s and learned to appreciate the vision that I have.
During my freshman year, I met another student with low vision at the campus disability resource center. We found out we lived in the same dorm and over time we became friends. She told me about an organization for people with low vision that she belonged to and invited me to go with her to a conference they were having. At first, I wasn’t sure if I wanted to go, but she insisted, and together we went to a session that changed my life.
I had always assumed that driving was not something I would do. I was waiting for the day when I could own an autonomous car, which seemed like a pipe dream on a teacher’s salary. During the presentation, though, I learned that research was being done for people like me. The speaker recommended that all audience members go visit a clinical low vision specialist to be evaluated for use of something called a bioptic telescopic system (BTS, or bioptics for short). Bioptics are glasses designed to help low vision people see well enough to drive if they can meet their state’s low vision driving requirements.
It took me time to find a clinical low vision specialist and make an appointment with Dr. Harley. He was amazing, and he fit me for the bioptics with a calming expertise. Although it was expensive, the bioptics he prescribed started to give me confidence that I may one day drive. I couldn’t afford the bioptics.
The weeks after my clinical low vision evaluation, I couldn’t think of anything else. I thought at length about low vision driving and if it would be something I could do. I was nervous about getting on the road since I’d never learned to drive before I was diagnosed with Stargardt’s. More than that, I was put off by the cost of the bioptics. The bioptics were an investment worth making only if I was certain that I was comfortable driving, and I wasn’t sure if I’d ever be comfortable behind the wheel.
When I went home for the holidays during my freshman year, I showed my family the information I got from the conference and some videos of people using bioptics while driving. My parents didn’t say much, but my brothers, sister, and cousins teased me about how I would look if I wore those funny glasses. They said no one would feel safe with a woman who was looking through funny glasses to see the road. I left home discouraged and uncertain of what to do.
With bioptics still on my mind, I went to meet with my vocational rehab counselor and asked him what he knew about bioptics and low vision driving. Luckily, he told me there was going to be a workshop on the topic, and I signed up for it without any hesitation. After attending, I came back to college as motivated as I was after the first workshop, and I knew what I had to do. The next time I was home, I talked to my parents again about my desire to learn to be a low vision driver. I think my persistence on the subject convinced them, because they seemed much more willing to understand how important exploring low vision driving was to me. They agreed to help me pay for the bioptics and driving lessons if vocational rehab wouldn’t pay.
I walked out of my parents’ home ecstatic about my future as a possible low vision driver. I met with my vocational rehab counselor and asked for advice and talked about my goal of learning to drive using bioptics. I explained that being a driver would give me more opportunities for teaching jobs. I also explained how I would use the bioptics both in college classes to see presentations and when I get a job. It took time, but vocational rehab agreed to pay for the bioptics and provide me with O&M services to help me with pre-driver awareness training or, explained simply, vision training before you are behind the wheel of a car. You learn skills like how to use your distance vision and your peripheral vision at different speeds and how to use your bioptics while you’re a passenger in a car. During my sophomore year, I worked with an O&M specialist. She would explain what I needed to do and then I’d go out to practice with my cousin who was at the same college as me. We worked to build my skills, and my confidence gradually increased. Whenever I went home for a visit, my parents would have me show them what I was working on and helped me with anything they could.
During my junior year back at college, I signed up for actual driver’s training with a driver rehabilitation instructor. She taught me where and how to look in the distance from my vehicle while also being aware of what was happening in my peripheral vision. With time, I learned how to use my regular prescription for driving and the bioptics as needed. I was incredibly proud of my accomplishments! At the end of my junior year, I was ready to take the low vision driving exam. When I was told I had passed, it felt amazing. Ever since my diagnosis, I never could imagine driving, much less getting an unrestricted license, which means I can drive any time, day or night. Today, when people see me driving, they don’t talk about how safe it is or how “funny” my glasses look. They ask me or my family questions about my bioptics.
It is really great being able to drive, but I still need to figure out how to deal with times when I can’t drive. I don’t feel confident driving in the rain or in the snow, so rather than dealing with the stress, I choose not to drive. Most people understand why I can’t drive at times and offer me rides. I’ve worked hard to not be embarrassed by my needs, so I don’t worry about asking people for rides, and I’m never afraid to explain why I need one. My friends and I have a system set up. I’ll offer gas money or buy someone a coffee if they give me a ride, and I’ll offer to drive when we’re going somewhere close by when the weather is good.
I’ve applied for two teaching jobs near where my family lives. Although I’ll live 30–45 minutes away from them no matter which job I get, it will be good to be living back near my family. I’m still figuring out housing, but I don’t have much to worry about. Whenever I want to, I’ll be able to drive to see my family, and that’s a freedom I never thought I’d have with Stargardt’s.