Shedding Layers in Bali

The other day I went alone to the southernmost point of Bali, and sat there, imagining myself on the map, feeling so incredibly small. It dawned on me that four months ago I was in the ER and almost lost my vision. Now, somehow, I’m here.

For the first time in nine years, my life isn’t ruled by doctors appointments but I get to decide. My sight isn’t clouded by black spots wherever I go, but finally I can stand to be in the sun, and it’s clear. I have never been so grateful to be alive, and feel this overwhelming desire to see everything l can, meet people from all over the world, and push myself to to try new experiences that challenge me. 

I have been in Bali for two and a half weeks now, and it’s incredible. There is so much beautiful nature, and the people here are so kind. It’s almost too much, like my brain can’t process it quickly enough. I keep reminding myself how insanely lucky I am to be here, to have my vision, to see all of this and not be in the hospital. I know how quickly it can all go away, and so I keep holding onto it and trying to make the most of it the best I can. I wake up at 6am most days just because I am so excited to start the day.

I won’t go into everything I’ve been doing, but I will give some highlights so far! I first stayed in Ubud, which is in the uplands of Bali, away from the sea and surrounded by rice paddies and waterfalls. As soon as I arrived there, I realized the best way to get around was by motorbike, but as someone who is already awful at driving, I was reluctant. Which is how I found myself on the back of a different guy’s motorbike every night to get around (Yes I am too trusting with strangers, but also still alive, baby!) . This was before I realized it was possible to order a bike through an app— that ended up being much easier.

Some highlights include:

• Making friends on the street while walking home from breakfast and deciding to drive with them to see waterfalls for the day

  

• Dancing at a cacao ceremony (also my first night here - I was very jet lagged and it felt more like a strange fever dream?)

• Hiking Mt. Batur, an active volcano, at sunrise. We had to get up at 2am for this, drive an hour, then hike two hours up steep terrain in the dark. I did not realize how tough it would be until I did it… people were apparently crying on the way up. But once we made it to the top, it was incredible. We had also brought eggs with us because I read that you could cook them with the steam from the volcano at the top, and that is what we did! Steam Volcano Eggs > Eggs Benedict.

  

  

• I walked through the Tegallalang rice terrace, which felt like an entirely different world.

• Visited Pura Tirta Empul, a water temple where you are able to cleanse yourself.

• Swam with the turtles at Gili Trawangan, an island so small that there are no cars, but only bicycles and horses (my dream— no more hitch hiking on the backs of people’s bikes)

• Met incredible people from all over the world, and heard their stories.

  

But before all this happened, I was terrified. I haven’t done much solo traveling, let alone somewhere so far away from home. I only decided to go to Bali a month before, because my friend Oriane was going for a work retreat, so I planned to meet her afterwards. I tried to plan as much as I could, and was so nervous beforehand I was barely able to eat. But as soon as I got here, I realized that planning was actually unhelpful. That it was better to arrive and see how you felt about a place, or the people, and decide from there. Every place I booked before I arrived, I ended up canceling. Which made me realize the best way forward is to take it day by day, and decide where to go and sleep as it comes.

It felt like the ultimate lesson in getting outside of my head, and listening to how I felt, rather than letting my anxiety about the future trip me up. I’ve talked about planning a lot in this newsletter. How I’m incapable of thinking of the future, because I’m worried about what might happen to me, or how my health could change at any moment. My lack of plans has often made feel like I couldn’t plan for life the way others could, that my future felt more amorphous while others could be so much more certain and stable. But being here and seeing the beauty in having no plans, I can appreciate the freedom in having none.

I believe another part of why traveling like this has made me so happy is that I haven’t feel this free in a very, very long time. I’ve felt so trapped by my health, by not being able to leave New York or go without seeing a doctor for more than a week or a month at a time. For once, I feel like I am finally more in control of my life.

Back in New York, I felt like I was searching for a way to move forward after my surgeries. And now that I’m here, I’m realizing that being in a new environment feels so meaningful because I think I needed space away from the place where I’ve been sick. Although I am better now, after going through the endless doctors appointments and surgeries, it feels a bit like a part of me died, or a version of myself. And I think I’ve been trying to define what my new self feels like, now that the dust has settled. Yes, I am physically different. I’ve had a vitrectomy in both eyes, have Retisert implants, as well as artificial lenses from cataract surgery, and ahmed glaucoma valves to control my eye pressure. But after going through all of that, I feel more resilient. More filled with a desire to do something meaningful with my life, to see and do everything I can now that I’ve been given a new chance to enjoy my vision for the next two years.

Since I’ve been here, I’ve felt myself slowly moving towards this new, altered version of myself. In doing so, I’ve slowly started abandoning the clothes I brought here. I know it sounds funny, because it’s just a few pairs of shorts and shirts, but it feels like I’m mentally able to grow into someone new here if I can leave behind what I brought with me. Also, my bag is very small and I definitely overpacked.

This newsletter feels especially terrifying for me to write because it’s the first time I’ve been this public about my eye condition. Maybe it feels easier to share now that I’m far away from home, but I’ve been wanting to do this for some time. I’ve had uveitis for 9 years, and spent the first 7 of them hiding it from everyone except my family and a handful of friends. Even the people who did know, I wouldn’t share anything with them because I was afraid of being a burden, or I didn’t know how they would handle the news.

But the past two years have been extremely difficult. They’ve been so bad that when I catch a surgeon up on a quick recap of my medical history, they always respond, “Wow, you’ve been through a lot.” It always feels especially terrifying when surgeons say that, because they’re seeing the worst of it. This sounds bad even to them?! But I usually nod and continue on with the appointment, never letting it sit with me that I have been through a lot. I just tell myself to keep moving, because if I think about it for too long, it gets too hard.

Only now I’d like to share my story with more people because I want to live as authentically as I can, and I believe that means not hiding this part of me anymore. What has brought me the most joy this past year is connecting with others who are also struggling with autoimmune conditions. And while I’ve been part of these communities, I’ve been nervous to share with those outside of them. So now I’d like to continue this love and support by sharing this newsletter in the hopes that it may help someone who is also struggling, but too afraid to share openly. I also host a support group over Zoom every month for those with uveitis and related eye conditions — please reach out to me if you’d ever be interested in joining!

Thank you for staying with me and reading for this long! And thank you to the friends who have been reading this newsletter since the beginning, for being so supportive and letting me post endless pictures of Oreo.

I was supposed to stay in Bali and then go home, but I am now leaving for Thailand in a few hours. I will continue updating this newsletter as I travel, but not an annoying amount or anything, don’t worry!!

Love,

Julia