Charlie's Blog

A Light in the Darkness

Saturday, December 23, 2023 5:32 PM

As I've mentioned before, I was born with a genetic disorder that will eventually lead to total blindness. It's not uncommon in my family. One brother and several cousins have it, as well as other relatives. I was legally blind by the time I turned 13. 


Eighteen years ago, I had a macular edema that wouldn't go away, so my doctor used a steroid treatment to get rid of it. My body was supposed to absorb the steroid within three months. It didn't. Instead, I developed steroid-induce glaucoma. In the space of six months, I lost the ability to read books and my left eye never recovered. 


Today I barely see movement and only a hint of light in my left eye. Three years ago, my right eye was 20/400 and uncorrectable. I use accessibility features on both my computer and my phone. Text to speech and dark mode help me function. 

 

My computer is set to 12x zoom. It lets me read a few words at a time. I get about five lines top to bottom and 25 characters left to right on my 32-inch monitor. But it lets me do what I need to, and I am incredibly grateful for the technology that lets me see that much.


I learned to type in high school and being a touch typist has been a great help as I can't read the letters on the keys anyway. So, when I write, I type it out, listening to the text to speech as I go, and then as I edit. When I do a rewrite or edit, I listen to each paragraph and then try to find what needs to be changed. It's easier with poetry as I go line by line.


At some point in the last three or so years, a membrane began to grow across the back of my right eye—my good eye. As it grew and thickened, my vision grew hazy. This year, it got so I couldn't make out letters in the haze. Even with dark mode. The white of the letters and numbers was just a haze and I had to rely entirely on my hearing. Captchas can be special, even the one where you hear letters or words and type what you hear. Some are great, but some have so much distortion and background noise I can't tell what they're saying. And I found that some websites SAY where a link is, but I'm not actually hovering over the link. That is frustrating. I've had to be more patient as sometimes it often takes me five or more tries to find anything. 

While it can often be frustrating, at least the technology is there. If it gets too hard for me, I ask for help.


I was told a year or so ago that I needed a laser treatment to burn a hole through the membrane. The problem was, I see a specialist at the Moran Eye Center. My insurance doesn't cover it, so I'm self-pay. It costs me $120 to $170 for a visit with 30% off for self-pay, but if I got the insurance plan that covered the Moran, I would be paying almost that much per month, so it's worth it to stay as I am.

 

But that meant that I had to find a doctor that would take my insurance as the laser treatment is fairly costly. Also, I'm a night person, and I don't always remember to get up early to call my insurance provider, so time passed. Finally, I got two names of eye doctors that took my insurance and picked one. I set an appointment for October of this year.


Four days ago, I had the laser treatment. First on the right eye, then I asked if the doctor could open the hole in tissue covering the back of my left eye a little to give me more light. He did.

 

The change is incredible. Not in my left eye, although I do see a bit more light. But in my right. Now there is only a little haze in my right eye now. I can see words again. I still need dark mode and zoom, but I can see those few words on the screen again.


I marvel every time I get on my computer or phone. I can once again work on a website and see where I'm putting something. I can edit a book cover. I can see WORDS. I am so grateful for it. I don't know how much insurance will pay. I hope they pay for most of it.

 

I've learned so much over the past two years. First I've had to rely more and more on my husband to do the things I couldn't. Every time I have to deal with black text on a white background, he has to do it. He had to check book covers and read texts out loud for me. He's been incredibly patient and helpful. I learned to not get quite so frustrated when I couldn't do something as there were more and more things I couldn't do. 


And now that I can see again, even what little I do see, I am so excited to get back to work. I have two books to get out in the next few weeks. One is for my dad and one is a collection of poetry. I can edit now! At least better than I could before. I miss printing out a poem or story to work on, but I can zoom in and see the lines of a poem.


It made me appreciate what I do have, and the lessons I learned over the past two years. I also know this is not permanent. I'm still losing vision, little by little. The time will come that I lose what I have and maybe one day I'll lose everything. But for now, I will appreciate what I do have, and what technology allows me to do.