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