M

y eye problems started 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 biol-
ogy 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 hap-
pening 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 pig-

mentosa. RP is a progressive condition that causes 
retinal degeneration. A brief overview: Those with 
RP experience a loss in vision because the photore-
ceptors 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 see-
ing 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 diag-
nosis, 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 peo-
ple 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 contingen-
cy 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 atmo-
sphere 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 ask-
ing “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 mov-
ing 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 per-
son 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 feel-
ings 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 frustra-
tion, the support of the people around me helps me 
to move forward instead of giving in to some alter-
native. 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 under-
stand. 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 reti-
nal 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.

Wednesday, January 18th, 2017 // The Statement 
7B

by Danielle Colburn, Daily Copy Editor

ILLUSTRATION BY KATIE SPAK

Personal Statement: The View from Here

