Living with Low Vision

One aspect of my vision impairment that makes it difficult to explain to others is that there isn’t one neat and tidy condition or issue that I have. “Low vision” is a generic term for a variety of conditions that result in impaired vision that can’t be corrected with glasses or surgery. My low vision is caused by a combination of conditions that probably could be corrected with glasses or surgery if they were my only condition, but the combination causes complications.

Here’s what I have been diagnosed with, in order of most common to least common:

  1. Nearsightedness. Lots of people have this and it is typically corrected with glasses. With glasses, I can get a 20/40 correction.
  2. Astigmatism. This is another condition many people have and it can typically be corrected with glasses. Mine is severe enough that I can’t get a perfect correction.
  3. Dry eyes. Another common condition. I use prescription eye drops twice a day and non-prescription eye drops throughout the day, but still, my eyes feel scratchy most of the time.
  4. Presbyopia. Difficulty seeing things close up. This is a common condition that causes folks my age and older to need reading glasses.
  5. Nuclear sclerosis. This is a form of cataract that many people my age and older get. It’s not bad enough yet to warrant surgery. It makes everything look a little cloudy to me.
  6. Photophobia. Sensitivity to bright light. Can be mitigated with sunglasses and a hat with a brim, but because of my low contrast sensitivity (see #8), I am even more dangerous with sunglasses than without.
  7. Hypertropia. This means my eyes don’t focus in the same spot. It is somewhat corrected by prisms in my glasses, but the correction isn’t perfect, and when I’m tired or I’ve been reading or writing a lot, my hypertropia gets worse, which leads to double-vision.
  8. Low contrast sensitivity. This is the condition I usually mention when people ask me about my low vision because it’s the one that’s not common and fairly easy to explain. The “not common” piece is important because if I say I have nearsightedness or astigmatism, people dismiss my claim to be visually impaired immediately because so many people have those conditions. The low contrast sensitivity is what makes it hard for me to distinguish between things that are similar colors, such as sidewalks, streets, and people in dark clothing. To me, it all looks like a weird grayish blob that goes on and on. There is no correction, but good lighting and being well-rested helps—but I have to be careful that my good lighting isn’t too bright, because then my photophobia kicks in and it can stress out my eyes and make the auto-immune condition (see #9) worse. It’s the low-contrast sensitivity that makes it dangerous for me to drive (I haven’t driven in several years).
  9. An auto-immune condition that makes my eyeballs swell up and change shape enough that the prisms in my glasses that correct the hypertropia are no longer able to correct it, resulting in double-vision. The swelling is also uncomfortable and sometimes painful. There is no fancy name for my auto-immune condition—it just seems that my body sometimes acts like it’s allergic to my eyeballs. I don’t seem to have any other symptoms.

I also have halos around the edges of my vision (undiagnosed so far). On top of all this, I have another condition that isn’t actually a vision impairment but it seems like one: I have prosopagnosia, also knows as face blindness. I see faces just fine, but I can’t remember them—even my own face or my daughter’s face don’t stay in my memory. I recognize people by their gait, voice, glasses, clothing, or hair.

The combination of vision conditions, especially the last three, is what, in my case, constitutes low vision. Any one or two of those conditions alone might be just a “normal” vision problem, but the combination of hypertropia that gets worse when I or my eyes are tired, low-contrast sensitivity, and the auto-immune condition push me firmly into low vision territory.

I am more likely to experience double vision when I’m tired or I’ve been reading or writing a lot. I typically experience it several times a week in the evening, after a reading- and writing-heavy day, but at the end of the semester or when I’ve really been reading and writing intensely, I can have double vision that lasts for a few days. Right now, I am on day 11 of having double-vision. By experimenting, I’ve found that I can get about three hours a day of reading and writing in if I take breaks every 20 minutes. During my breaks, I do some eye exercises, use eye drops, and sometimes put a hot compress on my eyes. After about 15 minutes of a break, I try to read or write again; sometimes my eyes tell me they are good to go and sometimes they tell me to keep on breaking.

During the times when I can’t read or write, I can sometimes get some work done using voice dictation in words and the accessibility tools on my phone, but because I don’t use those tools regularly, I’m not very efficient with them yet.

I’ve also learned that my vision goes double from looking at someone during dinner, attending Zoom meetings, and watching TV, so it’s not just reading and writing that tire them out.

Over time, I’ll get more fluent with the voice dictation and accessibility tools. For now, I have added this note to my email signature:

PLEASE NOTE: Due to vision issues, I am relying on voice dictation and am unable to thoroughly edit or proofread right now. Please read with generosity. Thank you.

It’s important to me that I’m not asking for forgiveness or apologizing for my vision.

The complexity of my low vision is why it frustrates me when the retina specialist I go to (because with all my conditions, I’m at high risk of a detached retina) says, “Well, in a few years when your cataracts are worse, I’ll do surgery and restore your vision.” No, buddy, you won’t restore my vision. You’ll remove my cataracts and maybe reduce my nearsightedness, but I’ll still have seven vision conditions—and oh, yeah, there’s a possibility that your amazing surgery will kick my auto-immune condition into high gear.

Or when someone tells me I should try acupuncture, or a B12 supplement, or yoga, or whatever. Or when they suggest that I’m using my low vision as an excuse for get out of doing something. I’ve had to work really hard to eek out a few hours of work every day for the past 11 days. It doesn’t feel to me like I’m getting out of anything.

Like a lot of folks with disabilities, I just want people to believe me when I say I have a complicated vision situation and then move on.

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