This Is What I Can’t See

People frequently ask me what things I can see and what things I can’t. It can be a bit confusing because we tend to think of blindness as zero vision, but it’s not a zero sum game.

I thought I’d explain things a bit.

It’s a bit of a two parter.

For a few hours a day, I wear contacts so that I can work without having to stick my nose on my computer screen, which is what I’m doing right now. My face is currently less than a finger’s length away from my screen. Sometimes I work like this if I’m in a lot of pain, but most of the time I deal with the pain.

I’ve written about the pain issue before, but I’ll sum it up here, too. Think of your corneas like grapes. When they’re healthy, they’re full of moisture. Mine are becoming raisins. I don’t blink normally because my eyes don’t move. It’s causing my corneas to dry out. Typically, a person would get a corneal replacement. Not an option for me because the problem would recur eventually.  Replacing my corneas won’t change that my eyes are paralyzed.

Because my corneas are so damaged, wearing contacts is extremely painful for me. When I wear them, I feel like someone has been jamming their palms into my eyes. But I deal with it because seeing is a good thing. I have gotten clearance from my doctor to do this, but only for a few hours a day.

With the contacts, my acuity is better. It doesn’t do anything for my peripheral vision or my depth perception. It does help a bit with color contrast, however.

I think the peripheral vision thing is self-explanatory. That’s one of the main things Buttons helps me with.

The depth perception can be confusing. Essentially, I can’t tell where a step begins and ends or even if there’s a step there at all. I also can’t tell how close I am to an object, especially if it’s not high contrast. I may think it’s further away than it is or closer than it is. It depends.

Not being able to see contrast might not seem like a big deal, but imagine what it’s like for me to go into Costco or any other warehouse store. The carts are grey. The walls are grey. The displays are grey. This means that I cannot see any of those things. It’s kind of scary, actually.

I can’t watch TV on an actual TV. Even with my contacts, I’ll miss some details. So, I watch TV on my computer. Yes, with my nose a few inches away from the screen.

The next question I usually get is “Why don’t you wear glasses?” Well, I can’t. I have a high level of irregular mixed astigmatism. What that means is that my eyes don’t refract light properly. Astigmatism is relatively common, but astigmatism like mine isn’t. My corneas are almost completely cone-shaped – you can’t tell by looking at me, though. Neither glasses nor soft contacts will do anything to help my eyes refract light properly.

Most people respond to that answer with “That doesn’t make any sense. That can’t be right” Ok, but it’s something every single doctor has told me. That kind of response carries the implication that I’m somehow not being truthful. It may not make sense to you, but it’s the way it is.

The only thing that would really help is a scleral lens, which is considered a prosthetic. It would help me see and protect my cornea. (note, this type of lens is custom made and not the basic scleral lenses people use for cosplay etc… Those can actually damage your eyes. The lenses I would get are not the same.) It’s also about $2K-4K per lens. It’s not an option. Even that wouldn’t be something I could wear consistently because of my damaged corneas.

Without my contacts, which is how I spend most of my time, I can see even less. The best way for me to describe it is to say that I can see a person’s body if they are close to me, but I can’t see their face. It’s a giant blur. When I say close, I mean they have to be no more than four or five feet from me. More than that and all I can see are the colors of their clothes… if their clothes contrast to the background.

But, it’s not all hopeless. I recognize the colors and patterns of brands I buy. So I can typically pick out what I want from a grocery store. I always hold it right up to my face to be sure. I always wonder if some people think I’m weird for doing that, but whatever. I’m blind. Who cares?

Although, being this blind has turned me into an incredibly close talker. It’s involuntary. We all want to see the person we’re speaking with, right? It must be annoying though, so I’m working on checking myself so I don’t do it.

Sometimes I can see things at a further distance depending on the contrast and the typeface. My brain also fills things in, especially with logos. The other day I was out and I could tell that I was looking at a Sleepy’s logo but I had no clue what the store next to it was. The Sleepy’s logo is in a clear font and it’s white. Plus, I have a general idea of what it looks like. My brain fills it in, like how all of our brains overlook typos or missing words. We know what it’s supposed to say, so we see it as right, even though it’s wrong.

There may be some good news in my future. I’m trying out something called a Rose K lens. It’s a gas permeable lens that will cover a large amount of my cornea. In total, it’ll cost me about $1,000. Pricey, but better than the scleral lenses. However, there’s absolutely no way to know how well the lenses will work for me until I get them and try them out. My acuity will be better, that’s a given. Whether or not they’ll be more comfortable than standard gas permeable lenses is an unknown.

They’re being custom made, so I don’t have them yet. Even if they aren’t as painful as my current lenses, it’s highly unlikely that I’ll be able to wear them for more than a few hours a day. So, not much will change. But, maybe a miracle will happen and they’ll be amazing, but I’m not particularly hopeful.

If you haven’t read it yet, check out my This Is What A Blind Person Looks Like post.

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Comments

  1. I’m glad to know all this stuff. I’m sometimes reluctant to ask, which I realise is ridiculous because I’d be totally okay with you asking “What is the extent of X and Y, and why/how is your digestive system specifically banjaxed?” about me. But yes, it’s good to know in such precise detail what things are like experientially and practically for you.

  2. “I recognize the colors and patterns of brands I buy.” – …And then distinguish them from the lookalike non-brand packaging, by their placement on the shelves (the cheap stuff always have you bend. I grew up as a stoop-shopper).
    I hope that the Rose K lenses will arrive soon, and work well for you. If only they give you some hours of reprieve per day, it’ll be worth it.
    This post gives us a better idea of how much you’re able to see – we’ve been wondering about that when we’d send you something, and trying to not make stuff too dependable on visuals.
    In daily life we don’t really regard you as blind. Not that we think you’re not, but just that it’s only one of many things that make you into you, and not the dominant one. Of course, the distance and the medium play a part in that too. That, and I don’t think it needs to be said (but I’ll do it anyway), doesn’t mean anything like “oh, enough about that already!” because it is important to write about. For you, and for others who haven’t got the opportunity or skill to do it.

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