My eye issues began about five years ago. I remember the moment distinctly, actually. It was my sophomore year of high school and I was walking into sixth-period biology when I noticed something was off with my vision. The strangest part then, and for a few years following, was not having the vocabulary to explain what I was seeing. It was hard to communicate my situation to people and doctors when I felt it necessary to follow every description with “It’s like that, but not exactly.”
At the time, I asked my mom to imagine the gray, grainy static of a TV station. That’s how I best described what was going on at the edges of my vision. I used the word “buzzing,” a verb that doesn’t even make sense in the context of eyesight. It was an odd kind of isolation; I knew that something was happening that wasn’t right, but it was such an unusual experience that none of the words I used to explain it felt right.
On Nov. 11, 2015, I was diagnosed with retinitis pigmentosa. RP is a progressive condition that causes retinal degeneration. A brief overview: Those with RP experience a loss in vision because the photoreceptors in the retina, which are responsible for sight, start to die. The symptoms and rate of progression differ from person to person, but RP usually starts by affecting night vision and peripheral vision, as it has for me.
I don’t want to say that the diagnosis was a relief, necessarily, but after five years of not being able to really understand or share what was going on and seeing a doctor who kept telling me that he couldn’t find any reason for the symptoms I was describing poorly, I started to wonder if I’d somehow tricked myself into seeing something that wasn’t there. So getting a diagnosis, something I could Google and learn about, a name that would connect me to other people dealing with the same thing, was, in a lot of ways, a relief.
Putting a label on something makes it feel heavier, more permanent, and that was something that people close to me worried about. It made the condition more real, absolutely, but that condition had already been a reality for me. Making my condition real was what I needed to shrug off the nagging doubt that it was all in my head, even if I knew, realistically, that that was a ridiculous idea.
But there were other feelings at that appointment. The doctor who gave me the official diagnosis asked me about my major. I told him English, and he told me that I might want to come up with a contingency plan, since careers related to English are pretty dependent on, well, being able to see. He also told me that I should stop driving — I later found out that it wasn’t just that I should stop driving, but that legally I had to stop driving in Michigan — and that I would probably want to think about living in an urban area in the future. That was the first time that I thought about how the situation was going to affect my life in the years to come. I asked him if I was going to go blind, and he didn’t have an answer for me. Since RP affects everyone so differently, it was hard for him to say what, exactly, was in store. It changes the atmosphere of a room when a doctor tells you that there’s no way to rule out blindness being in the future and that you may want to adjust accordingly.
The thing about a situation like this is that there’s not a lot to do besides go on with your life. I stuck with my English major, because I’d already gone through the very college crisis of figuring out what I cared about enough to spend years studying. And because I love English. If the legions of people asking “But what are you going to do with an English major?” weren’t going to get in my way, neither was this. The word about my eyes got around, as it does. I had people reaching out to tell me I was brave. Or strong. I think that’s what people say when someone is dealing with something that they don’t understand. The sentiment was sincere, kind and appreciated. But it was hard to feel brave just continuing on.
I started to feel like a fake, like a trickster who had duped family and friends into believing that there was something fundamentally admirable about just moving forward in the face of some doubts and changes. Especially when, as far as doubts and changes go, this one wasn’t earth-shattering. Of course, this is only my experience of RP, a condition that affects every person differently. But for me, I knew that I was doing pretty well as far as this situation goes — I still have my central vision, all I’m really dealing with is an inability to see at night and peripheral vision that doesn’t do its job. But that knowledge didn’t stop feelings of fear, confusion or frustration. Those moments were accompanied by guilt and the worry that I was letting down those people who praised my bravery, as if any show of strength would be negated by moments of weakness.
Going on with my life isn’t especially noteworthy. It just is what it is. But in times of fear or frustration, the support of the people around me helps me to move forward instead of giving in to some alternative. I think it’s hard to feel like living my life as regularly as possible is out of the ordinary because everyone deals with things that others don’t understand. And because the people around me have done everything they can to accommodate me and make me feel like nothing has changed. My mom has always come to my doctor appointments and is always at the other end of the phone when I need her. My dad drove from Grand Rapids to Ann Arbor to go to the appointment where I got my official diagnosis, and made a late drive home after I asked him to stay for dinner because I wasn’t quite ready to see him go yet. My younger brother Zach, relatively recently licensed, drives me places when I’m at home. Over Thanksgiving break, he was in pajamas and settled in at home for the night when I asked him to drive me somewhere because I was seriously craving chocolate cake, and he obliged. Even when I found myself unable to really share what was going on, they never let me feel alone, and for that I am so grateful. My friends always let me take their arms or hands in dark rooms when I’m adjusting and struggling to navigate. One of my best friends has, on multiple occasions, let people know that I wasn’t ignoring their high-fives, I just couldn’t see them. It’s the small ways in which those closest to me let me know that, while they don’t understand what I’m seeing, they’re around anyway for whatever I need.
I visited another hospital this summer with my family, a hospital that is doing all kinds of research and looking for ways to stop, and even reverse, the progression of RP. My parents came with me to speak to the doctor who specializes in inherited retinal diseases. My mom asked him if I was going to go blind. To this, he replied something to the effect of “Not on our watch.” He handed a tissue to my teary mother nonchalantly, as if it were all in a day’s work to tell parents that their children aren’t facing some kind of life sentence. And while this doesn’t change that the only course of action is to keep on keeping on, it doesn’t hurt to have hope and to know that there are people working on the behalf of people like me with RP.
To learn more about retinitis pigmentosa, visit http://www.blindness.org/retinitis-pigmentosa.