tiny moments

reflections on this past week before going back to surgery.

I stare ahead. When my right eye is covered, I can barely see with my left eye, as if an ominous grey cloud is covering the letters I know should be right in front of me on the eye chart. Afterwards, my surgeon asks me to show him what I see. I ask for a card with some writing on it, and a nurse standing in the corner hands me one. I scribble all over it, showing how I can only see every other word. I am reminded that no matter how much technology he has to look into my eyes, he still cannot see what I see.

My surgeon tells me this ominous cloud is a sign of late stage glaucoma. Normally people in their late eighties with severe cases are seeing this. But you’re too young to lose your sight, he tells me. You still have a long life ahead of you. He assures me he’s going to do everything they can to help me improve my vision, or at least not lose more than I already have.

Where are you? People keep asking me. Where did you go? I try to stay present, but constantly these days, I am somewhere else. Thinking about the vision I may never get back. Thinking about how to mourn what I’ve lost. How to adapt to this new quality of life. Where did you go? I am letting myself get overtaken by this giant abyss of fear, letting myself imagine the worst, I want to say. And then, I come back.

I go to a boxing class for the first time. These days, I feel so overwhelmingly angry and don’t know what to do with this anger. At the beginning of the class, the instructor tells us how we are taught to be ashamed of our anger, but it is a natural emotion like any other. What is important is that we channel it in a healthy way. As we run through drills, the instructor yells out, “Remember, your pain is temporary. This will pass.”

Over coffee, I tell a friend that I feel like a butterfly caught in the cocoon. I so badly want to break free, to fly and see the world and enjoy my life. But my health is always holding me back, telling me I’m not ready, it’s not time, not yet, be patient.

I left the eye hospital, and a blind man was walking down the street. I noticed him walk up and down the block as I stood on the corner making a phone call. I asked him if he needed help. “Yes, please,” he said. “I’m looking for the eye hospital. We were standing right in front of it, but I took him to the entrance and walked him in. “Thank you,” he said. “My eyes were really bothering me today.” I nodded. “I get it. Me too.”

I meet a new eye doctor, and she asks me to tell her my story. My entire journey over the past 11 years. Even though I just need to tell her the clinical details, all the medications and procedures, it is difficult to continue. To hear my story laid out like this and remember how much I’ve been through. How much more lies ahead.

This month, I bought prescription water goggles so that the next time I snorkel, I can see the fish more clearly. When I spoke with the woman over the phone as I ordered the goggles, she asked me for my purpose with the goggles. Was it to scuba dive? No, I told her. I just don’t want to miss any of the fish. I want to see them as clearly as possible.

I started learning Italian, and taking classes with a man who lives in Turin. For our first lesson, he asked me basic conversational questions. Where do you live? New York, I said. But I leave and come back. Sono a little nomadico. He stared at me quizzically. Perché eri andata in un'altra città? Why would you leave and come back? I laughed. I didn’t even have the answer in English, much less in Italian. He offered to try another easier question. Why are you learning Italian? I told him, I will be DJing a music festival in Italy this summer and wanted to be able to speak at the festival. He started to laugh. This is a very unusual lesson, he told me.

When I stare at myself in the mirror, and cover my right eye, half my face is blurred out. At first, it made me sad that I couldn’t see my own face. Then, I had this idea to paint a self portrait of myself where half of my face is blurred. A week later, I taught a painting workshop, and a man made a painting with half the face blurred out. I told him I had been wanting to make this exact painting. “We must be connected,” he said.

I got a new calendar where each day poses a new quote or question. On April 30th, it read: “What do I need to do today in order to create stability or safety in my life?” I read this quote as I was packing up yet another sublet, hours after hearing that I most likely would never get my vision in my left eye back. “To not constantly be in fear of losing my vision,” I said out loud, and continued packing.

The night before my flight to Sedona, I meet a guy while at an ecstatic dance. He is a great dancer, and sweet and vulnerable. We walked onto the roof of the building and looked at the moon. He asked me if I liked clementines, and I said yes. He put one in his mouth, then kissed me and squeezed the clementine juice into my mouth.

Later, he stared into my eyes. When his gaze lingered, I felt afraid. I’m scared he’ll see all my red surgery scars, my patch that is still settling, my cataract lenses. I am scared he will see it all, as if he could understand all the pain in just one look. “You have the most beautiful, seductive eyes,” he says instead.

The next morning, I fly to Sedona for a friend’s wedding. The woman next to me is working on a slideshow on her laptop, and one of the slides reads: “Holding onto pain holds us back from healing.” I asked her what the slideshow was for, and she mentioned she worked at a non-profit called the Choose Love movement where they teach children to spread compassion. I ask her how it started, and she explains that her 6 year old son Jesse was killed in the Sandy Hook shooting. “All pain has meaning,” she tells me. “But even this sort of pain?” I asked, incredulous. She nodded. “Look at how it has sprung me out of my comfort zone,” she said. “I don’t want to be consumed with anger. I just want to spread as much compassion as possible.”

On my first day in Sedona, I walk to the Amitabha Stupa, a Buddhist park for prayer and meditation. There is a sign right when you walk in that reads: “It is most beneficial to circumambulate the Stupa, walking in a clockwise direction, at least three times, while reciting a mantra or making heartfelt prayers for the benefit of loved ones, the state of the world, or all sentient beings. You can chant any mantra, such as OM MANI PEDME HUNG, the mantra of infinite compassion.”

I walk through the park, past the trees decorated with colorful prayer flags, and am brought back to this question of finding stability and safety in my life. And I know, immediately, deep in my bones, that I need to feel at home in my own body before I can feel at home anywhere. Suddenly, it starts to rain.

I go to sit under a tree for shelter, and there is a man playing the flute. It sounds so beautiful, and the rain falls but I don’t mind. I close my eyes and listen to the wind and to him playing. There are two children sitting next to him, also listening. When he is done, I thank him and go on my way. But when I return from a short hike, he is still there.

He tells me his name is Zach. He is a tour guide, and he plays the flute while his tour explores the park. He goes on to describe all the places I need to visit. More importantly, the venues to go to for ecstatic dance. He tells me how Sedona is cursed because it was always meant as a temporary place for healing, but no one was supposed to live here. We head out of the park together, and he asks me if I need a ride. I tell him I was just going to walk, but he tells me to jump into the tour van instead. I join the rest of their tour of Sedona, and then he drops off me for lunch.

On my last day in Sedona, I went to see a psychic for a short reading. Instead of asking her what would happen with my health, I asked her how I could live with it. What I could do to find safety. I pulled a card. She told me that I had to dance. To keep moving my body, and listen to what it was telling me. To let it guide me.

Later that night, I found myself at the Humankind center, the venue Zach mentioned to visit for ecstatic dance. When I arrive there, there is no ecstatic dance, but live bands are playing on stage. The dance floor is made up of purple and white crystals. I go to sit down, and there is only one man dancing. He motions to me to join him, and I think about the psychic and how she told me I need to keep dancing. I take off my shoes and join him, the two of us barefoot on the crystal floor. “How did you find this place?” he asked me when the song was done. “I was in a park and met a man playing the flute, and he told me to come here, so I did.” He smiles. Just then, my flute friend walks in.

---

Tomorrow morning, I’ll be going back into surgery for my left eye. A part of me knew this was coming, even though every doctor told me I would be fine, that I should just be patient and let my eyes heal with time. But in the end, all I can do is surrender, lead with compassion, and hope for the best. Thank you for reading, and remember to always listen to that stranger in the park playing the flute.

Love,

Julia