For a long time, it’s been a common occurrence for me that while riding my mountain bike, I find myself having ridden off-trail into the woods. I always hopped back on and kept pedaling. After moving to Oregon in 2020, it seemed that maybe it was happening more often. After skiing into the orange boundary rope at Mt Bachelor because I didn’t see it, I finally heeded encouragement from others to have more testing done. I was living my life like anyone else but had enough examples I couldn’t continue to ignore.
In 2022, I went to the Casey Eye Institute in Portland and was diagnosed with Retinitis Pigmentosa. “R.P.” for short, is a degenerative retina disease slowly deteriorating the rod and cone cells within the retina. At the root of the disease is a mutation on one small gene named “cep78”. I’ve never had any information on my genetic history, as I was adopted at birth. There is hope for a cure, but at this moment, none exists.
Statistically, most people with R.P. have lost their sight by the time they’re in their 20’s. I feel incredibly fortunate to still have as much sight as I do. While both eyes are impacted, my right eye is especially weak due to a large amount of retinal scar tissue disfiguring its shape and function. My left eye is much healthier and together create a functional and at times interesting perspective on the world with symptoms such as light flares and “starry” vision.
R.P. creates blind spots in my vision that are getting bigger over time. They will slowly but surely grow from my peripheral vision toward my central vision. One day, I may have vision as if looking through a straw. I’ve long tried to find an example to help others relate to my perspective. The best I can do is this: when I look down at my feet and focus on the toes on my right foot, I can see them clearly. But my left foot vanishes in a blur of nothing. In other words, I live life in “portrait mode” as seen on iPhone.
These days, I’m in a mixed bag with my vision loss. I feel confident driving down an open road but restrict myself from driving after dark. In low light settings, I can feel my eyes strain and experience slight distortion. It’s a difficult reminder of the darkness to come.
After I stopped ignoring my diagnosis, my vision loss became my sense of urgency for doing three cross-country bike trips in three years.
