My Nystagmus Story
I was diagnosed with congenital nystagmus at a very young age, and I have learned to live nystagmus over the course of my life. Initially, my ophthalmologist recommended glasses and strabismus surgery, which I underwent in the 8th grade. Before that, the strain on my eyes required me to take multiple breaks to rest my eyes, and I would get stares and questions as to why one eye was not aligned with the other. The strabismus surgery allowed me to live a more normal life.
Music
Growing up, I spent a lot of my time playing violin in the orchestra and singing in the choir. I found something unique in music that allowed me to express my emotions – it was a great way to work out frustrations and celebrate in times of joy. Music has been a great help to me emotionally; it has allowed me to calm myself quickly, improving my nystagmus.
Pharmacy School
The fine print in my pharmacy textbooks and lecture packets made my eyes extremely fatigued. I got a pair of binoculars to see the organic chemistry structures and audio-recorded lectures so I could replay them if I missed anything. I was exhausted, and I wasn’t sure if it was my eyes or if I was not mentally focused. I set out to train for a marathon over the next 16 months. I wanted to see if I had the motivation and determination to cross the finish line; it was not about speed but more about learning whether I could do it.
Marathon
When I got to the 20-mile marker, my legs were shaking, and the pain started to settle in; I wanted to give up. I met another runner named Nicole from Virginia; she was also running her first marathon. Even though all the water stations had closed, we decided to team up. We both crossed the finish line just minutes before the 7-hour maximum time limit. We stared at each other and hugged because we knew that we could not have finished without each other’s help. This experience was a great reminder that accomplishments are rarely achieved individually, and we all need others who sharpen our focus and motivate us to complete our goals. It was the first time I asked myself, if I could complete a marathon, what lies have I been telling myself about other potential accomplishments?
Ryan
At that point, when I was focused and asking myself what I needed to do to finish pharmacy school and how I would do it, I met my friend Ryan, who had cerebral palsy and was in school to be a physician assistant. He worked with the Bureau of Vocational Rehabilitation Services (BVR), which provided an advocate and the additional training equipment he needed for school. He encouraged me to look into the Bureau of Services for the Visually Impaired (BSVI).
Low-Vision Optometrist
During this journey, I met a low-vision optometrist who opened my world to the visual aids that were available and what functional vision meant. For the first time, I saw several visual aids that I had never seen, biopic glasses, CCTV, monocular, and backlit magnifying glasses. She showed me options that would help me read, watch a movie, and drive. My favorite memory is of when I put on the biopic glasses and read the eye chart. I began to tear up, and asked, “Is this what people with 20/20 vision see?” She nodded and said it was. It was the first time I realized all the details of life that I was missing. My next question was how much the iopic glasses cost; I wanted them. She then showed me a CCTV that would allow me to magnify my textbooks; I couldn’t believe how much easier it made reading. At the end of the appointment, I had a list of visual aids that I needed; it was the first time I’d had a proactive strategy to face my disability, and I felt a calmness I never before experienced.
Career
Today, I am a nuclear pharmacist who has been working for the last 9.5 years. I had always thought that having a visual impairment would make me less valuable to my organization. Instead, I have found that compensating for my nystagmus forced me to develop that editor’s eye, which has allowed me to be more detailed and organized than most. It has been a challenging journey, but each obstacle and challenge has allowed me to develop the skills and logical strategies needed to succeed. The most important lesson I have learned is to be confident and tell others that my disability is only a small part of me, and I have the special equipment I need to communicate through the computer. Some of the tools I use include double-stacked monitors, CCTV, headphones, and ZoomText Magnifier and Reader. Finally, I learned to use my True Vision for tasks with higher liability, typing prescriptions or looking through a microscope. I also use my ears to obtain information, and ZoomText’s reader function works well for reading emails or gathering information on a website. At home, I use a mixture of Alexa, Google, and Siri to help me with tasks around the house, such as turning on a light switch, locking the front door, adjusting the thermostat, or getting the latest weather conditions and news.
Mobility
Finally, I have realized that many people depend on local transit, especially individuals with disabilities. I currently ride the paratransit system, which provides door-to-door services in the hours after dusk. Working at night had been a challenge, since I had to travel on a street that wasn’t lit well, had an open ditch, and no sidewalks. Knowing that I have a reliable and safe ride to work has taken a lot of stress out of my daily life.
ANN
It wasn’t until 2019 that I went to my first ANN Conference or even knew such an organization existed. I had spent my whole life trying to figure out nystagmus on my own. I went to pharmacy school so that I could learn to read my medical chart and hoped that one day I would meet a healthcare professional who could help me. I remember arriving at the conference and feeling for the first time the relief of not having to explain my nystagmus to anyone; many of us had learned the life hacks needed to be successful. It was wonderful to know that I was never alone and that I had just found a community that could support me in ways none of my friends and family could.
Reflection & Outlook
Now looking back, I am grateful to have gone through all the challenges of living with nystagmus. There are so many skills that I have learned that helped me to develop into the person I am today. And now, the advent of delivery services from Amazon and other local vendors has made it so much easier to get daily tasks done. We live in a significant era for those with disabilities, and the future will only be brighter when autonomous cars are available, and we can live off the grid.