My visual epiphany

As I lay here, contemplating life and things, I had a bit of an epiphany (about myself, not anything that would benefit the rest of the world, of course).

I have a few posts wherein I mention my dwindling vision, but, in the posts and real life, I’m always a little flippant about it.

“Yeah, my peripheral vision’s gotten really bad, and I can’t see the same distances anymore, but what do you think of the new Mayday Parade album?” (quick aside, it’s called Sunnyland, and I love it)

Yet, in contrast, when I talk about my eye doctor, I get frustrated because I don’t think he took my visual concerns seriously when I first brought them to him about two years ago. It felt as though he was saying that, because I didn’t read print, or actively rely on my vision for more obvious things, that it wasn’t as high a priority. But I use my vision for travel: Sometimes i’ll see the pole before my cane hits it, or if it misses it completely (though sometimes not), finding visual landmarks, seeing traffic lights at night, and differentiating between my darker, sad-looking 3 train and the well lit 2 at 14th street, when it’s too loud to hear announcements. To stare lovingly at all of the shades of blue I have in my wardrobe and, well, in my life in general. To admire the glow of brown of my hand in sunlight. To laugh at the person in the neon colored shirt (colors like that grab my eyeball and refuse to let go). To get angry when I can’t figure out if my pants are black or navy unless I have the two colors pressed side-by-side… Perhaps it seems insignificant, because I can’t, and never really could, examine all of the finer details of something. And if I am walking with other people, I rely on my cane and their vision. But all of that is still a part of my visual reality. Something that cannot necessarily be measured, or is not readily apparent to someone sighted. But is still quite real to me.

But anyway, it felt as though, because I don’t do more important sighted things, it was something we could hope was a side benefit of adjusting my medicine to help my eye pressure. Rather than actively working toward trying to preserve it. Vision lost from glaucoma can generally not be regained, and sometimes, no matter how many drops you use, you will lose it anyway. But it doesn’t mean you shouldn’t try.

I already had losses in the past: I used to be able to read money with a bit o’ squinting, and I could consistently read the numbers on a cable box until about a year ago. But I adjusted. And I’m sure I will adjust again, but by being so flippant with the world, and even myself, I feel like I was disregarding the feelings of… frustration. And maybe not loss but… something like it (some English major I am, right?:)

What I came to realize today is that, I think that I think if I show how much the vision loss is bothering me, it feels like I’m contradicting everything I’ve said in my posts and videos over the years. Things like:

•Being blind (visually impaired, whatever) isn’t something that bothers me. Other than not being able to drive a car, I’m genuinely happy with things. I love reading braille. I love playing with all of this technology… so why is it a big deal that I’m losing vision? If I’m so happy with things, if I encourage my fully blind friends to do… whatever, then why does the thought of being fully blind make me panic?

I know it’s not from a fear of inability after blindness, but, I think, worry that I will eventually forget all of those things listed above. But knowing the reason behind my emotion, still seems like a… betrayal of everything I’ve put out there.

•I hate when people assume that I’ll jump on the first surgery that promises 20/20. I’ve only ever wished for the amount of vision I had as a kid. I still had to use a cane, but I never cared about that part. I just basked in what I could see.

This was when I read both large print and braille. My sister tried to have me keep going with my handwriting, and print reading, but my teachers wanted to focus more on braille. I wish I had continued working with her. But it felt useless if I wasn’t going to be using it in school. But I still loved those days, when I forgot to braille my spelling words, and my teacher would write them out in large print for me to study and copy over at home. Getting back the vision I had when I was younger, it’s something I can wrap my head around, not this nebulous idea of “perfect vision”/20/20. This is my reality, and a change in my vision that drastic would probably cause a lot more trouble and adjustment than most people think it will. I would have to re-learn so many things (for example, print), But also how to see with both eyes (since I could never see from the right one).

•Why is it okay to grab my arm in the street? I don’t care if you’re offering to help me cross—which you usually don’t do, actually, you just let me know your helping and assume I’m okay with it. Would you grab the little old lady and just start dragging her across the street? Or hop into someone’s car and just start steering because you know the route better than them? No. So why is it okay because I have a mobility cane and not a walking stick? Or Because my vision is less than yours? Do either of those things somehow negate my humanness?

Being unhappy about potentially becoming fully blind feels like I’m saying something is wrong with blind people. Like it’s something we should hide. Like it’s now okay for you to tell me that I’m going the wrong way because I passed the exit. But you, the all-knowing sighted, didn’t notice the entrance to my school off to the side. And now it’s amazing that I’m going to school. My family must be proud. Not because they have a member in college, but because they have a blind person in college. Do you stand at the entrances to the campus telling each student you’re proud they made it? No? Just little old me? What if I’m rich and my parents money could buy me into college, and the girl behind me is someone from a society where women are not allowed to get an education, and it really is amazing that they made it?

This isn’t to negate the struggles of some blind people. But you shouldn’t assume that every blind’s life is like walking on a bed of nails. Whereas you, privileged Sighted—not in the racial sense, but in the having working eyeballs sense—had it easy comparatively (because of those eyeballs).

It feels as though I’m betraying the nature of that last rant by being distraught about my own vision problems. I know I’m not, but it doesn’t change that I feel that way.

So I shrug it off, and then have a completely unexpected cry on a bench in Madison Square Park. It was a few weeks ago, I had taken off my sunglasses, and I forgot how long it takes my eyes to adjust from them, and I freaked out a bit at how much dimmer everything was.

I forget how much writing it all down helps me sort through it all.

Of course I could have talked to any number of friends about this—and I sort of have, but there’s always a lightness I take to the conversation that I don’t really mean to but, see above, but there’s something about just writing—I love writing—that truly helps to give me some perspective.

I’m naturally a little flippant about things—I’m usually genuinely unbothered by a lot—but that then makes it easy to transfer over that glibness to things I do care about, that make me uncomfortable.

  Well, as it’s now 5:13, I should probably try to get back to bed (I woke up 3 hours ago and haven’t been able to fall asleep).

Hope you enjoyed my rambles.

And check out my last vlog, a room tour, until I come back. Which will be sooner than last time.

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