Here We Go Again
Going back into eye surgery, and learning to surrender.
In my last newsletter, I mentioned how my eye pressure had gone up after my MS infusion, but I was searching for answers as to why this happened, or how to fix it.
Now, it has been exactly 3 weeks since my infusion, and my eye pressure is still alarmingly high, which means I will be needing eye surgery in two weeks.
To explain briefly, when eye pressure is too high for too long, it can cause permanent optic nerve damage, and I could lose vision in my left eye for good.
I was holding off on writing this newsletter because I’ve been to a different doctor every day for the past 3 weeks, and no one has known what we should do, or what caused it.
I’ve met with 3 uveitis specialists, 3 glaucoma specialists, 1 retina specialist, 1 rheumatologist, 2 neurologists, and 1 acupuncturist, some of them multiple times each. I had 2 fluorescein tests, countless OCT imaging, 2 ultrasounds, and have read the vision chart so many times that even when I couldn’t see anything, I had started memorizing it, and suggested to the nurse that they should really get a new eye chart made soon because I knew it by heart.
Yesterday, I was told surgery was unavoidable. They are looking at February 13th, for some nice Valentine’s Day surgery vibes. It is also, as my friend Chloe pointed out, Tu BiShvat, which is a Jewish holiday that means, "New Year of the Trees." So, maybe it’ll be a time of love and renewal and growth all in one. Or I’ll fall in love with a doctor. You never know.
I was also holding off on writing this because I am still processing the news myself. My biggest fear in the world is eye surgery. It’s a part of what keeps me living so hard and traveling so much and putting myself out there over and over again. It’s my love and curiosity for the world, yes, but it’s also fueled by this fear that I could be back in surgery at any moment.
I am well aware that anything can change in an instant, that you need to appreciate these moments of health and hold onto them and do whatever fucking makes you happy while you still can. Every major surgery feels like a little death. It’s making room for rebirth, yes, and something new. But it’s also full of pain and fear, and you have absolutely no control.
When surgery was mentioned as a real possibility last Thursday, I broke down. The thought of going back to that eye hospital where I’ve had so many traumatizing experiences — surgeries not working, the anesthesia not working halfway through said surgeries — I went to a really dark place. I tried to get a bubble tea to cheer myself up, but for some reason I also got the merch there, to show you what kind of dark headspace I was in.
On top of facing surgery again, it also meant rearranging my plans. I was planning to go to South Africa next week, to celebrate my friends Avi & Nix’s wedding. I’ve been looking forward to it for so long, but when I tried to find some way to still go, every doctor thought I was crazy for even asking.
Now every uveitis and glaucoma specialist in New York and Maryland knows about their upcoming wedding. I felt really devastated to not be going, in large part because I had just ordered myself a safari hat and it looked really cute, and I never look good in hats.
So, I kept resisting and trying to fight my surgical fate. The next day, I found an acupuncturist who claimed they had helped glaucoma patients before. I laid there on my side, in a small room in Midtown, as the doctor inserted the acupuncture needles all over the back of my head, where she told me she felt the most inflammation.
“Wow,” she said, “You have such beautiful, thick hair. I wish I had hair like this.”
Staring ahead, I told her she could have it. In fact, if she healed me and helped me avoid surgery, I swore to her I would shave off all my hair, and give it to her as a wig.
“Oh, um, no, that’s okay,” she said, a bit flustered. I realized I had reached the point of desperation that I was offering strangers wigs of my hair.
“I will try to heal you, and hope that God rewards me for this by making my own hair grow back like yours. How about that?” she offered.
Late that night, some friends organized a Shabbat dinner to cheer me up. They came over to my apartment, brought over food and many different kinds of cheese, and I felt overwhelmed by this love, so grateful to feel supported in this time when hard medical news usually makes me feel so alone. The theme of the night was “no pressure.”
Earlier this week, I went to Maryland with my mother. It’s 2.5 hours each way by train, and we left by 10am with one intention: to see a specialist at Johns Hopkins.
I was extremely nervous to go back to Maryland. Just scheduling the appointment made me break down into tears. When I moved back to New York from LA during Covid, I was searching for the best specialist, and everyone told me this doctor was the one I needed.
So, every month, my mother and I would drive to Maryland and back in the same day just to see him. He was stern, and intimidating, but brilliant. We did this drive for a year and half, and when the medications he tried on me did not work, he was the one who had me do five surgeries over the following year.
Going back now, I dreaded it deeply because it felt like I was going backwards, reverting to where I used to be. Back to being sick when I thought I had made so much progress.
Walking through the hospital, and observing how all the offices and artwork looked the same, I felt like how superheroes must feel after they go back to the lab that first gave them their powers after years of intense experimentation and pain.
But when I met with the doctor, something funny happened. It was okay.
In fact, he wasn’t as serious and cold as I remembered him. He even smiled, and showed off his new beard under his mask. He told me how despite my pressure being high, my other disease, my uveitis, was completely in remission. I had worked 10 years to hear those words, and it still felt surreal.
“I looked at the photos of the back of your eye, and they were incredible. Whatever you’re doing, it’s working,” he said.
What I feared would be a confrontation over all the trauma he had caused me, actually turned into more of a moment of closure. I was hoping he had some insight into how I could avoid surgery, but he told me it was unavoidable. I thanked him for his time and we left.
We arrived back in Penn Station at 7pm, and I took the subway directly to Judson Church in Greenwich Village. Yes, it had been a long day at the hospital, I had been to another state and back, and I hadn’t had a full night’s sleep in weeks, but still, I went out, because there was an ecstatic dance that night.
I got to the church, changed out of my jeans into a more comfortable dancing outfit, ripped off the bandages from the hospital, and danced.
No matter how tired I am, when I am going through something difficult, dancing and moving my body helps me work through it.
And as I danced there, surrounded by friends, I marveled at how much I had changed from my last surgeries. I never had this outlet before, and over the past two years, I’ve learned to channel my pain in such healthier ways. To share it with others, to be as vulnerable as I can, to release it on the dance floor.
I still got the same awful news that day that I’d been getting all week, but maybe the Maryland trip wasn’t so bad because I realized I could handle it better now. I felt stronger, more capable of facing hard choices. I knew how to respond to difficult moments in life better now - not by isolating myself, and watching tv, and feeling too afraid to ask for help.
But by trying to surround myself with friends and family, and realize how much love I have in my life to get me through this. That I have this incredible support system and community around me. I know how to ask for help more. I have this newsletter to communicate what is going on with others, rather than shutting them out.
I’m still terrified for what is to come. How painful the surgery will be, and if there will be complications, and how rigorous the recovery period will be. But I’ve come to terms with the fact that it is simply something I need to get through, and whatever happens, I will be okay.
Rather than resisting, I decided to surrender.
Surrendering to the unknown, and relinquishing control, is a constant practice.
I practice it when I fly to a new country without knowing anyone. When I show up to a music festival without a plan, or try psychedelics, or hitchhike with a random stranger.
I practice the act of surrendering often, and yet, medical surrender is its own beast. It is putting your life, your health, into someone else’s hands and trusting them completely. It’s understanding that you are facing immediate danger, but going forth anyway.
Still, were they really any different? I wasn’t sure. They both require faith, and inner strength, that things will work out, despite all the fear surrounding you. So, after the dance that day, I decided to surrender.
Yesterday, I signed the consent forms for the surgery, officially setting it into motion. My friend Chloe and my mom came with me to the appointment, and after we left, we walked by a woman selling jeans with dogs in party hats on them. And you guessed it — I now own them. Going forward, I need to stop making purchases immediately after discussing my imminent surgery, because I’ve been making a lot of chaotic choices.
Afterwards, the three of us ordered soup dumplings and everything almost felt normal and nice.
On our way out, we we made one more impulse purchase - matching crochet crocodile hair clips!
It’s been a long 3 weeks, and there are another 2 weeks to go until surgery. I’m going to try my best to stay busy and see friends and dance as much as possible until then.
I know it may be difficult to know how to help, especially when it’s a condition most people don’t have. But just checking in and calling and visiting makes a big difference, especially in these next few weeks.
Thank you for reading, as always.
Love,
Julia
♥️♥️♥️♥️ Endless love for you, my powerful force of life!!! Strong and centered and beautiful <3
You are so amazing and I am so grateful you are my daughter. Love is a powerful drug and you are loved so deeply by so many. This is just a speed bump that will pass. Thank you for sharing! You write like an angel💕🐶❤️
Ps. Groundhogs day is around the corner and love is in the air for boo.