Retracing My Steps
Going back to the eye hospital, and a brief stint of Korean news fame.
Last Sunday, I walked through the doors of New York Eye & Ear, after telling myself I’d never come back. I made it towards the clinic, and sat in the waiting room, desperate for help. The last time I was there was late August, 2022, after my fifth surgery that year. I sat a few floors up from where I was sitting now, and was told there was a chance I could lose my vision for good. The vision in one eye kept changing. One day, it was stable. The next, it wasn’t. We just had to wait and see. My mother and my best friend Amanda sat with me, and we waited.
Last week, I waited for someone to tell me what was wrong. I had gotten my infusion for my MS two days earlier, and everything seemed fine. I fell asleep from the drugs, and when I woke up, friends and family came and visited and brought Korean snacks and art supplies.
But the next morning, when I woke up, I couldn’t see out of my left eye. It was like a blurry haze had fallen in front of me, and nothing was in focus anymore.
A familiar dread awoke inside me. The last time this happened was when I was undergoing all my eye surgeries. And now, for the first time in years, it had returned.
Just a few days earlier, I thought to myself how my uveitis, my eye condition, feels like this curse, and ever since being in remission, it’s like a curse has been lifted. Now, maybe I spoke too soon.
When the nurse checked my eyes on Sunday, it turned out my eye pressure in my left eye had shot up to 36. My right eye, which was still stable, was 14, which is in a healthy range. As soon as they left to go get the doctor, I burst into tears. I knew what this meant. A pressure that high meant I’d need surgery again.
I sat in my chair, while my mom sat silently next to me, and I cried.
As another doctor examined me more thoroughly, I could see out of the corner of my eyes that Amanda was standing in the doorway. I could only make out her silhouette, but it was enough to make me burst into tears again. When he was done examining me, Amanda came over and hugged me tight. Friends and family showing up for me, holding me, in moments like these, is the purest form of love I know.
It turns out, I was wrong. My high pressure did not mean I needed to go back into surgery. I was preparing myself for the worst, which was what I’ve just been trained to do when it comes to my health. But this time, I had slightly better news.
They gave me new medications and eye drops to take every few hours, but still, even as I write this, the pressure hasn’t gone down. No one knows why this happened, or when it will stop. My vision in my left eye still comes and goes. But I am told to wait and see. I am doing my best to live my life the best I can while ignoring the fact that it hurts to read and blink, ignoring the fear that it’s been over a week, and 6 doctor appointments later, no answers have been offered on how to stop it, or why it happened in the first place.
I spent the first few days after my infusion and eye complications resting at my parent’s house. It had taken a lot out of me, and I was shaken. During all these years of remission, having a flare up and returning to the eye hospital is what I feared the most. It follows me in my dreams. It’s the reason I avoid that entire corner on 14th street. And yet, I did it. And I’m okay.
I stayed hidden for a few days, and saw no one. Partially, to rest, but also because it is hard to face the world. I am so emotionally exhausted, deep in my bones. And yet, eventually, I come out of hiding and decide to go back to living my life.
The first thing I do is go on a date. When I tell my roommate, she thinks I am joking. But I need to pretend life is still normal and not just focused on my health. We go out to see Gary Gulman’s comedy show Grandiloquent, and then we get dinner after. I learn more about him, and he tells me he is a professional poker player.
“So, you like to take risk?”
“No, not necessarily. Your career is risky, too. Being a freelance writer is a risk. You give free time and your experience in the hopes it will lead to something else, but that itself is risky.”
I smile. He wasn’t wrong.
I have a friend who leads wilderness treks, and he tells me how one day, he came upon a tree that was mangled and sick on the right side, and completely healthy on the left side. One day, he knelt before the tree, and scooped up the dirt at the base of the tree, and smelled it, and it was the most beautiful soil he had ever encountered.
I had a great time on my date, and I wondered what had been different. And then I realized, a part of it was how I acted. I decided to go out very last minute, and did not shower, or put on any make up. I just went in jeans and a comfy sweater. My eyelid was puffy and swollen, and I told him I had been at doctors appointments all week, and that I was on new medication so I couldn’t drink. There was no pretending. While ordinarily, I’d feel self conscious about my eyes and talking about my doctors, and try to hide all my medical issues, or at least put on some eyeliner, he didn’t care about any of that and we had the best time.
I want to come to terms with my illnesses a lot more. I still try to seem “healthy” and look put together enough that no one thinks anything is wrong. And usually, my illnesses are invisible enough that I can pass as okay to others. But it’s exhausting.
For my latest MS infusion, I didn’t tell anyone I was scared, but of course, I was. It’s hard to hold it all.
I want to learn to be in the world and move through it more authentically. To lean even deeper into not feeling like I have to hide my illnesses, or when I’m struggling with them.
On Thursday, my friend Caia came over to visit me, and she brought us magazines for us do some collaging. Sometimes it’s hard for me to articulate how I want people to show up for me, but I loved that in the past week, friends were helping to create a creative space where I could heal and not strain my eyes, without me needing to say anything.
Two days ago, I pulled a card in a tarot deck. It was the Tear. It read:
“Tears are droplets of letting go. Once they begin to fall, we allow the swelling tide of emotion to run its elemental course. Often The Tear is what is needed in order for a conversation or situation to break into the next level of intimacy and vulnerability. Some say that tears are so powerful in softening our egos that they open up a portal to The Unseen world. Through our watery eyes, the ancestors catch a glimpse of us, and we are reminded of their eternal embrace. We sense our humanity, our humility, and we allow ourselves to be held.”
I thought of crying in the waiting room at the hospital a week earlier. That maybe it was necessary to open me up, to soften me.
Over breakfast this weekend, a friend was telling me about a dream they had. In it, their pet bird was dying. It was sick, and wilting away in the cage, so my friend ran to the store and begged the pet store owner to give him a new bird. And he did. He left with a healthy bird and went on with his day.
“So, what do you think that meant?” I asked.
“That bird was my soul,” he said. “ I’m not taking care of my soul. Of what’s in here.” He pounded on his chest.
Sometimes, I feel angry at my eyes, for causing me so much pain. Sometimes, I feel gratitude to them for everything they allow me to do. I feel a gentle sadness for everything they’ve been through. And by the time I get there, to a place of acceptance and sympathy, rather than resistance, I just want to pray. I know we just have to wait, but maybe we can pray in the meantime, too.
After my date, we walked towards my apartment, which is right down the block from the exterior of Carrie’s apartment in Sex and the City. But because there are people outside it constantly taking photos, they’re now putting up a gate. I explained this to him, and he stared at me blankly.
“Is this a big deal? I’ve never seen Sex and the City.”
I tried to tell him it was like what Entourage was for men, but better. We crossed the street to give him a tour. When we arrived, a camera crew was there. A woman holding a microphone approached me.
“Hello! Do you know that they are putting up a gate outside the apartment?”
“I do know that! I was just telling him.”
“Would you want to be interviewed about it? We are a news channel in Korea.”
I couldn’t believe my luck. “So, you’re saying this will be shown in Korea?”
She nodded.
You can view my rise to stardom here:
