Losing my vision.
March 2025
To not see.
I remember sitting on Judy’s couch on March 1st, just past midnight. My back leaned against one armrest, and my legs rested where someone else might sit. I watched my fingers move across the keyboard, crafting last month’s monologue as I stole glances at the New York City skyline. I admired the shapes of the never ending buildings and the soft glow of the lights sparkling between.
Back when both of my eyes still worked.
The next morning, Judy gently woke me to catch an early flight. I opened my eyes, and a rush of tears streamed down my left cheek. I shut both eyes tightly, praying that the pain would pass. It doesn’t.
Over the next seven days, I saw four ophthalmologists. I had more dye dropped in my left eye than the dye in a kid’s fruit roll up. I’d read so many letters I could tell you by memory what the different eye charts at different offices were, where the tissue boxes were in each room, and what the name of the software on their computer was.
And after all of that, I found myself laying on the cream-colored couch in my living room. I covered my sighted eye and held up my hand—I could barely count five fingers. My laptop screen blurred into the couch with no border. The dining table was gone. The plant resting on the table cloth—she never existed. The TV was, at best, a light grey rectangle. Nothing I’d been prescribed was working. No one could tell me why. Still, every morning my alarm would go off, and I’d fear the moment when I’d open my left eye and discover what more of the world I had lost.
Then it happened. Ten days in, I woke up, I closed my right eye, and extended my hand in front of me. I saw nothing. I frantically wiggled all my fingers. But I counted none. I really didn’t know what else to do, so I went to the ER. My first time, might I add. I’ve never seen any of those medical dramas, but I’ll paint you this scene. This dark haired, rather serious looking man is giving me an eye exam, and he’s pointing at a letter chart.
“Can you see this line?”
I tell him, in much kinder words: “Sir, I can’t even see that you are standing in front of me, let alone that there are letters on the wall.”
And the poor man keeps trying.
“How about this line?”
“I unfortunately cannot see that.”
“How about this one?”
This whole situation, oddly, made me laugh. Just the night before, I’d starred in scenes of tragedy—a birds eye shot of me in fetal position on my rug calling my mom amongst tissues and Tylenol; a montage of me reconstructing all the faces I remembered seeing last as if I would never see them the same way. Now, here I was playing the role of comic relief. I thought to myself, “Honestly, this guy could totally be messing with me. He could be pointing at a blank wall, and I’d have absolutely zero idea.” Eventually he gives up. I felt a little bad.
I was then chaperoned to a solitary room where I twiddled my thumbs. Several medical assistants came by who were all really sweet. They all asked me how I was doing. I think they were surprised to hear me say that, “I’m doing well, thanks for asking!” with a ridiculously happy smile on my face. I don’t know. I think at that point I’d grieved my eyeball quite a bit, and it’s hard to be aware of the reality of your situation when you, well, can’t see.
About three hours into waiting, I get saved by a call from a clinic who had received my records from some of the previous ophthalmologists I saw, and they told me to come in ASAP. As one would, I stood up from the chair I was sitting in and walked out the room. I then immediately learned that—you can’t just walk out of the ER.
Eventually, I was discharged and went to the clinic where I got pictures of my eye taken, something I would begin to do every week, and I got the surface of my eye scraped and cultured in petri dishes and test tubes, something I luckily do less frequently. We got my first lab results back, and it is revealed to me that I have Acanthamoeba Keratitis1 which is rare corneal infection. In other words, I have an army of amoebas in my eyeball.
I’m writing this a month since the amoebas first moved into my eye from the cream colored couch in my living room. I still can’t see more than I did that day. I can barely see my fingers wiggle. No laptop border. No dining table. No plant. No TV. The recovery process is expected to be long. As my doctor puts it, my eye is currently a battleground with active acanthamoebas being slain and dead acanthamoebas lying around everywhere waiting to be carried away.
If you sat beside me on Judy’s couch back in February with the NYC skyline behind us, I would have told you about the weight I felt in my chest. I would have told you how I felt dissatisfied with where I was in life, what I wanted to see change, and how I thought I might go about it.
But these days, I’ve lost all of those worries. I wake up every day and feel happy just focusing on healing. Some days, my eyesight will be a little clearer. I’ll hold up my hand and see multiple fingers, and I’ll quite literally say to myself, “What a great day it is to be alive.”
I feel deeply grateful for the people who’ve shown up for me—my mom who calls me every day and mails me goji berries, turmeric, and sweet potatoes to aid in my recovery, my sister who comes by my apartment minutes after I call her to just to hang out with me and distract me from the pain, and my friends who visit and continue to check in. I’m reminded again and again that these people are the most valuable thing in my life.
I look forward to the day when my alarm goes off, and I open my eyes, and I wiggle my fingers in front of me, and I can see each finger, each vein, and each wrinkle. I look forward to day I can write to you and tell you that the battleground of my eye has been restored to a lovely, amoeba-free pasture.
If you made it this far, thank you for reading my March inner monologue. If you have questions, opinions, and experiences about any of these topics, I would love more than to discuss! That’s why I write after all :) You can find me @jjanezhang on X.
A special shoutout to my friend Jacob for being a great friend, to my coworkers for being kind and understanding, to my doctors for dedicating a life to helping me and others, and to my mom and sister for being them :)
Other topics I thought about but didn’t write about:
The difference between creating from the perspective of an artist, a scientist, and an entrepreneur and balancing creating to express yourself versus to help others.
Creativity results from curiosity and risk. LLMs will make humans more creative than ever before because the payoff of asking questions is greater and faster than ever before and it feels more comfortable to be wrong in front of an LLM than a teacher or a peer.
The challenge of being in the sandwich generation. I asked my mom what she wanted in the next 40 years of her life. I thought this was a fun discussion topic.
Read the original motivation for my this writing project here:
I name this for anyone that gets diagnosed similarly and feels seen hearing about my journey. Feel free to reach out!
Here for you 🫶🏾🫶🏾, you’ll get through this Jane!
oh man!! wishing you a smooth recovery jane 💗💗