Life update! I recently regained 20/20 visual acuity after coming close to going blind last year. I'm in the process of rebuilding my life. There are so many things that I thought I'd lost forever, that I am able to do once again for the first time in over a decade.

For example, I can paper books again! I've always loved rummaging through bookstores. I loved discovering authors by picking up a random book off a shelf, and reading a passage. Due to vision loss, for the past decade, my only way of engaging with printed media was to smell the paper and ink, or run my hands over the page's texture. But now, I can read again without the special accommodation of large, high-contrast text on a screen.

Every day, I notice new details about my surroundings. The world feels so big and sensuous now. It's almost too much information for my brain to grasp - in a good way.

I'm super lucky that I got my vision back, and I don't want pity. But I do want to share a little bit about what happened, because it was such an insanely weird, Lynchian/Buñuelian thing to go through. TL;DR I have my eyesight back and I'm excited but also battered. I grateful to everyone who helped me, and I'm hopeful about the future.

Longer version:

As many of you know, I've had a lot of eye surgeries in the past related to glaucoma (I'm now up to 19). Sometimes when you have a lot of those surgeries, there are delayed side effects that appear years later. Basically, what happened is that my remaining good eye was once treated with a chemical called mitomycin, necessary for a previous surgery to go well. Well, it turns out that mitomycin sometimes causes eye tissue to degrade years later. Essentially this led to a hole in my eye with interocular fluid to leaking out, resulting in my remaining good eye losing its structural integrity (the other one only has 10% visual field left so it's almost useless).

When this happened, my retina got displaced and became misshapen. Think of the retina like a projection screen on which all the images you see appear. In my case, the retina became all bunched up, so everything I saw looked jagged and wavy. And the retina moved to the middle of the eye, which is not the right place for it to be. As a result, everything was also getting projected behind it, which means everything was blurry, all the time. And because the retina wasn't fixed in place anymore, every time I took a step, everything I saw bounced around. This had been an increasing problem over the past several years, but last summer the issue spiked exponentially.

Things got deeply weird. I lost the ability to perceive straight lines. Every single line, everywhere I looked, was jagged. Every day looked like a new more progressively fucked-up Louis Wain cat era. I lost the ability to see people's eyes and read their expressions, making me feel deeply disconnected from those around me. When I walked outside, the faces of strangers around me were constantly rearranging - the nose floating up to where the eyes should be, and vice versa. I couldn't street signs, and got lost often. I couldn't read text unless it was HUGE, and even then, the letters bounced and shifted. I couldn't use new software, just programs where I'd memorized all the menus from years past. When friends texted me photos or memes, I often had to ask them to explain what was in the image, because I couldn't parse it.

When things got really bad, I started having non-psychotic hallucinations. This is a phenomenon called Charles Bonnet Syndrome. It happens when the visual data you receive is so garbled that your brain starts guessing what it is it incorrectly, like a faulty autocomplete. One time, on a flight, I called a flight attendant. I looked up and I saw a man wearing a Victorian bellhop uniform. I was confused about why he was dressed this way, but started asking him for a glass of water. When I blinked, he vanished - replaced by some bright green light glares that my brain had mistaken for a human being.

In order for the retina to bounce back, I needed a surgery. That surgery is called a scleral graft. They took a piece of donated heart tissue - the pericardium - and used it as a patch. Once patched, the eye's interocular pressure would increase, forcing the retina back into the correct position, and smoothing it out. The surgery had a 2/3ds chance of working, which felt like good but not great odds. I remember watching Crimes of the Future right before surgery lol, and wondering if it would be the last film I ever saw.

The surgery was painful. I had to stay awake for it. (This is generally the case for all eye surgeries - you can't get general anesthesia, because you have to actively cooperate with the surgeon). Afterwards, they gave me fentanyl intravenously twice, but it was still the greatest pain of my life. My friends and family took amazing care of me. Afterwards, the sutures hurt for about six weeks. There were days when I couldn't keep my eyes open because blinking hurt too much. I couldn't leave the house because the suture pain came on unpredictably. My world became really, really small.

But then something miraculous happened. My retina bounced back! The jagged lines straightened out. Letters stopped bouncing when I read them. Colors came back in lush, full intensity. It happened gradually, and it was thrilling, every week, to see more and more of the world coming into focus. Finally, I went to the optometrist and we tested my visual acuity. My vision corrected to 20/20 with lenses, which hasn't happened since 2009. That was one of the most triumphant moments of my life. And without glasses, my vision is now at 20/30, which is INSANE to me. I didn't think that would happen, ever again, in my lifetime. I think a lot about what a miracle it is that someone's heart enabled me to see again. I'll never know who this person was, or what kind of life they lived. But they're a part of me now, and it's given me my life back.

There's a lot of joy and grief mixed in together. Grief at projects derailed, messages unanswered. If you messaged me in the past year and I didn't respond, it's likely because I was I had a hard time reading. But also... I'm excited to pick up the pieces, make new things, and rebuild my connections to the world. I'm not cured from glaucoma, and I still have limited visual field, but the vision that I do have is spectacular. I will try to treasure this for as long as it lasts. It's possible that I will have a new eye problem one day, but hopefully not. My plan is to try to use every remaining moment I have to its utmost potential.

Part of my healing process is sharing this story, so that I can put it behind me. It happened, things got weird, it took me out of commission for a while, and now I'm on the mend. There's still so much that I want to contribute to the world. I don't know what's going to happen next, but I know that I'm not done making things and having adventures. I'd like to thank all my friends who were there for me. You know who you are. <3

Thank you for reading!!!