Grieving my body

July 2026

Sargent, John Singer. Treetops against Sky. 1909–13, watercolor and gouache on paper.

I sat next to my friend N on the bus to our sixth annual cabin retreat. We watched the Connecticut trees fly by as we caught up on each other’s lives: work, relationships, health.

N asked me how my eye was doing, and I asked him how his back was. He said, “I don’t know if you felt this way, but I remember the hardest part was grappling that I’m in my early twenties and my body isn’t working. All my friends are playing sports, working hard, getting into relationships, and I’m struggling just to get through each day. My body will never be the same, yet I have so much life ahead.”

As he said this, I was brought back to last July. When I laid on my bed in Tahoe and stared at the lines on my fingers, opening and closing my eyes.

When I first started to grieve my body.

-

February 28th, 2025 was the last day I could see through both of my eyes. When I woke up the next day, the white in my left eye had turned red. The inner corner poured with tears. And as the week passed, my left eye went blind. I couldn’t see my hand in front of my face, let alone a person standing in front of me. After many painkillers, corneal tissue samples, and boxes of tissues, I learned that I had gotten a rare amoebic eye disease.

From March to June, I battled for my sight. I dropped amoeba killer in my eye every hour. I cut out black sticky notes for my left glasses lens to shield my battlefield from daylight. I laid in my bed and alternated between icing my eye with bags of frozen corn and soothing it with hot compresses.

Gradually, I went from seeing no hand to a blur of flesh to five wiggly fingers. The red in my eye faded and the pain disappeared. In July, I stopped taking my medication, and when my symptoms didn’t return, we knew the amoebas were slain. But every morning, when I opened my left eye and tried to see the veins in my fingers, the wrinkles in my knuckles, the line where my nail bed ended and the white of my nail began—I saw none.

Up until July, when I asked my doctor when my vision would return to normal, she would tell me it was too soon to tell whether my poor vision was due to inflammation or scar. I remember the day when her answer changed. It started like the dozen office visits before. I sat in the back room with the lights off and my face pressed against a slit-lamp microscope. She looked at my eyeball and said, “There is a scar in the center of your cornea. Your vision will never be the same.”

My heart sank into my chest. After months of fighting for myself, hoping, believing that I would recover, that all this pain and lost vision was temporary, I felt defeated. But in the next moment, I took a deep breath. I drained the tears from my eyes, and I picked myself back up like I did every day before.

“Is there any medication I could take to remove the scarring?”

“What about any surgical procedures?”

“Will it naturally fade over time?”

She said that there was no medication that could remove the scarring. That the surgical procedure I could do involved a corneal transplant, one that had risks of rejection and future surgeries for the rest of my life. That the scar could fade over the next decade but never back to clarity at which I saw the world back in February.

The weekend rolled by. And I still went on my planned Tahoe trip with my two close friends. We hiked around the lake, and I watched as they marveled at the lush green pines. I looked at them too. But, where they saw one tree, I saw a blurry green blob overlayed a crisp fir. My two decades of learning to be present with people was defeated by my self pity. I thought:

“I will never be able to see trees like I used to.”

“I will never be able to walk down stair steps, freely, like I used to.”

“My friends will joyfully leap from stone to stone across the river, and I will always swallow fear looking at the stone in front of me.” (My depth perception is now poor.)

Back at the cabin, my friends barbecued some incredible food that we shared around the dinner table. As we chatted, I looked deeply into their eyes. They probably thought I was making intentional eye contact, but instead I was feeling envious of their clear eyes, admiring what I had lost. That night, I climbed into bed and pulled the covers to my chin. The tears began to fall like they did every night before, and I continued to hold myself like I did every night before. At some point, my tears ran out, and I decided that I wanted to search for hope. I began Googling “cornea scaring treatments”. I asked ChatGPT for paper summaries on the latest scaring medications. On the car ride back, I texted all my doctor friends hoping they could connect me with someone who could help. I told myself that the fight wasn’t over, that this was the moment when my eye was still actively recovering and maybe that meant that if I had a chance to fix it all, it was now.

For a moment in my whole eye saga, I felt lucky. One of the text messages I sent connected me to a professor who had a potential drug candidate that he’d seen some success with in clearing cornea scars. On a Wednesday morning, I flew to Cleveland to meet his colleague. I was excited to receive a prescription for the medication but sobered to receive a warning that the vast majority of patients who tried it saw little improvement.

Every morning on my new medication, I’d hear my alarm go off and pray that today was the day my vision would be better. Then, I’d open my left eye. I’d look at the veins in my hands. The wrinkles on my knuckles. The line between my nail bed and the white of my nail.

But I saw none.

August passed. September. October. With fleeting hope, I woke up early and commuted an hour to see yet another eye doctor. A technician dilated my eye, and for a couple of hours, my pupil became larger than my scar, to the point where I could see outside of it.

I walked back into the waiting room, and suddenly I saw one chair. One side table. One painting on the wall. The room looked so vibrant, it hurt my eyes. I sat down, and without turning my head, I could see the person sitting to the left of me, the blue in her shirt, the grey in her hair. I looked down at my own fingers and closed my right eye. I saw the veins in my fingers, the wrinkles in my knuckles, the line where my nail bed ended and the white of my nail began. I cried. I remembered what I had lost.

Then the new year arrived. February, March—a year since I lost my vision. April, May, June. Every day in between, I showed up to work, I looked at my computer screen, I saw two windows, a blurry one with no words layered over a crisp one with meaning. I wrote code. I launched products. On the weekends, I sat in all my favorite coffee shops and wrote my now 19th consecutive monthly essay since January of last year. I had rich conversations with my friends. I laughed with my sister.

Last week, I walked to grab coffee with a friend, and she asked me how my eye was doing. For a second, I wondered why she was asking me this question, and then I smiled. I said that up until she asked, I hadn’t thought about my eye for what felt like months, and that I’m amazed by how I’ve forgotten that the way I see isn’t normal.

As we walked down Market Street, I looked at the doubled buildings, the overlayed words in the street signs, the blur of people walking past my left shoulder. I searched my body for a jolt of fear, a wave of sadness, for a view in front of me that I disliked.

But I saw none.

---

If you made it this far, thank you for reading my July essay. If you have questions, opinions, experiences about any of these topics, I would love to discuss! That’s why I write after all :) You can find me @jjanezhang on X.

A special shoutout to my friends Luke, Rishub, Chris, Andrew and Amy!

Other topics I thought about but didn’t write about:

1.

Empathizing with others’ grieving processes. A month doesn't go by that I don't meet a friend who tore her ACL skiing, or a coworker who fractured his ankle playing soccer. And as they tell me their story, I imagine the moment when they broke their body, when they put their life on pause, when they started to heal but never back to normal, when they watched people around them do the things they now feel vulnerable doing, and the days they continued to smile and rediscover the wholeness of their body. I feel that I’ve unlocked a universal human experience, and that I’ve never felt closer to people in these conversations.

2.

Waiting for ideas to ripen. I’ve been thinking about writing this piece since the beginning of this year, but I always felt there was more to the story that I hadn’t lived yet. This month, when I met my friend for coffee, I finally felt that I had lived through the resolution, that my ideas and reflections were fully ripe to share.

3.

Life is shaped more like a hunting game than a basketball game. I increasingly feel that most of life is showing up, putting in effort, enjoying the narratives in your head during the process, and shooting when the time is right.