May 30, 2012
It's hard for me to admit, but I’m scared. I really think
my eyes are getting worse. The blind spots are more prevalent, and maybe bigger.
My eyes don’t seem to be compensating for each other (where the blind spots are
in different places in each eye) as much. It’s harder to focus, especially to
read. I see flashes more often and in unfamiliar shapes and locations. My eyes
tire even more quickly than usual. It’s not unlike when I first noticed changes
in my vision at the tender age of 15.
I really don’t want to lose my sight. There are too many
beautiful things I’ve yet to see. I don’t want to miss watching my nieces and
nephews grow up. I want to be able to see clouds and rain and rainbows and
sunsets and nature and the stars in the sky. I want to look at my wife (should
I ever be so fortunate) and notice every detail of her perfect, corporeal self,
to gaze into her eyes and get visual proof that her love for me is sincere. But
who would want me then, anyway? I’m already so broken.
I don’t want to lose the limited independence I have now. I
don’t trust or expect, really, anyone to take care of me. What happens when I
get woozy and fall and I can’t see what’s around me? What if I’m outside and
fall into the street? How will I get around and do normal things like shop for
groceries or clean my house? It’s not like I have the money to pay someone to
assist me. How will I keep in touch with people? So much of that now is done
online. Will I have any social life at all? I do so little as it is, in large
part because of my limitations.
So far, the doctor hasn’t been able to observe any changes,
and even if he eventually does, there’s not very much to do about it. I’m
taking steroids now. There may be one other medicine to try, or possibly some
chemotherapy treatment. Nothing’s proven to work. I’ve figured my vision would
get worse over time. I’m not a terribly lucky person, especially with regards
to my health, and having it start when I was so young just gives it more opportunities
progress. I’m only 33, though. (Fuck, I’m 33. “Only” 33?) Oh, and I have all of
this other crazy shit wrong with me, too. I might be the only person who’s ever
existed with my combination of major ailments, and, no, that does not make me
feel special.
I’m scared. I’m trying not to freak out any more than I
already have. I’m having mixed results with that. I’ve been more anxious than
usual, often having to catch myself to calm down. But there’s no getting away
from it. Every time, EVERY TIME I
look at something, pieces are missing. When I close my eyes, there are weird
shapes and patterns. It’s only when I’m sleeping that it’s not noticeable. I’m
looking down at my hands as I type and I can’t see parts of my fingers or the
keyboard. The words on my screen are an inch tall and that’s almost too small
now. When I was at the movie theatre earlier tonight, it was harder than usual
to see what was playing on the screen.
What am I going to do? I’ve already had so much taken away
from me. I used to be so much smarter. It’s harder to learn and retain
information now. I just can’t be exposed to things the same way or with the
same frequency as I did before. I find myself just skimming across words
instead of actively reading them because it’s too God damned frustrating to
read a sentence 5 times because I wasn’t able to see the all of the letters
that were put together to form words and sentences. I lose my place on pages
and then have to make all of this extra effort just to find where I left off.
And then it happens again and again and again.
Deep breath…and again…
I’m scared and mad and depressed and
confused and so very fucking tired of my body failing me. When is enough
enough? I’m not sufficiently damaged yet? I don’t want to have to fight so hard
all the time just to be. I want to really live, not just survive. What am I
going to do?
I close my eyes sometimes while walking around the house, or
even outside when there’s not much around to cause me major problems,
practicing. “How many steps to the bathroom? The door should be coming up. What
the hell did I just trip on? Where’s the table? OUCH! There it is.” I try to
experience what it’d be like not being able to see. I’m pretty good at it, too,
but, for now, if I’m ever unsure about my surroundings, I can simply open my
eyes and adjust accordingly. That probably won’t be the case in the future.
What do I do when I open my eyes and it’s the same as when they were closed?
I hate that so much of my identity is based on what I can’t
do (anymore). A lot of what I was capable of is even tarnished because it was
so long ago that no one remembers. I forget sometimes, on purpose, even,
because it hurts so much knowing what’s been taken away from me. Now I’m just
poor, sick, lonely, pitiful Brent, a good enough guy, but, fuck, does he have
so much wrong with him. It wouldn’t be as bad if all of this physical stuff
didn’t bleed into everything else. My sense of time is off. It’s hard to do a
whole lot, so I end up sitting around, thinking, just trying to find ways to
occupy myself so I don’t dwell and obsess over everything. Even when I’m
feeling OK, it’s hard to find motivation because it’s likely that I’ll feel
crappy again soon enough, and probably before I finish whatever task I set out
to do. I’m tired of being so damaged and of being seen as so broken down. It
bothers me more that it’s a fairly accurate assessment. It’s not always easy to
access or to express, but there’s still so much to me that no one really gets
to see. Even those things seem to be slipping away, though, as my body falls
more and more apart.
I’m scared. I don’t want to lose the rest of my sight.
*sigh* There’s so much I still want to see, perhaps even your beautiful face.
Tick tock…
