Celebrating One Year of Eyewitness Newsletter!

Please send presents in the form of subscriptions and dog treats!

It’s a very exciting day! Not only did I post my very first newsletter exactly a year ago today, but it is ALSO my dog Oreo’s birthday. He is turning 4, which means in human years, this is the closest we will ever be in age in our lives (I will be turning 30 in a few weeks). A special moment! Everyone please wish him a happy birthday when you are done reading this. 

A photo of Oreo and I at the farm when he was only 3!

I thought I’d share a little on how this all began. I started this newsletter last September, and sent it to 40 or so friends and family members. Throughout 2022, I had multiple eye surgeries, with a lot of complications. I needed a way to update people in my life on what was going on so I didn’t feel alone and shut people out, because texting the same horrible news over and over again felt traumatizing in itself. It was also hard to ask for what I needed from people in my life, because it felt like they didn’t know how to speak to me or help me. And I understood. When someone is going through a traumatic time, you simple don’t know the right thing to say out of fear of saying the wrong thing. Then, with the suggestion of a therapist at the time, I started this private newsletter to share some personal and medical updates on how I was doing, and what I would find helpful. 

It helped immensely, and for the first time in my health journey I felt like people really understood what I was going through. I was touched by the way the people in my life showed up for me once I was able to let them in. But every time I posted, it was still terrifying to be so vulnerable and honest about my health. I had kept my eye condition a secret for the past eight years of my life. It was still new to me to share so openly. 

Throughout 2021 and 2022, every time I tried to make a plan to move, to travel somewhere, or do anything, I had to cancel it. My eyes always got worse, or I needed to try a new medication, or go into surgery again. I became so terrified to hope for anything, to plan at all, that I just stopped altogether. It was too painful. 

And then, miraculously, by the end of 2022, I started doing better. It was November, and I remember my surgeon telling me that I could start seeing him every month now, rather than every week. Around this time, my friend Oriane told me she was going to Bali for a work trip and asked me if I wanted to join her if she could extend a week. I asked my doctor, and he said a month, even a month and a half! would be okay. 

This was huge. I hadn’t been able to basically leave New York without my doctor’s permission, and now I could go as far away as Bali for an entire month. He gave me the name of a doctor in Thailand that he had heard of in case anything went wrong and it was closer than flying back to New York. With that, I told Oriane I would go. 

I left for Bali the first week of January, and fell in love with it. I was supposed to leave three weeks later, but came back seven months later instead. After a few weeks in Bali, I felt so deeply free and allowed to be myself. I knew a big part of that meant unapologetically sharing every part of me, even the parts I was afraid to share, like my uveitis. So, in late January, I decided to make this newsletters public and share with everyone in my life who wanted to be updated.  

It’s been incredible to have people reach out after reading this newsletter, and know that they were able to connect to it, whether they have an autoimmune condition or not. I’ve been touched by all the love and support, and it only makes me want to keep writing and sharing. Here is one of those “years in review” updates I got on my phone, that I think pretty accurately encapsulates these two years:

Since last September, this newsletter has evolved a lot. It started as almost a medical journal, documenting my recovery from all my surgeries and doctor’s appointments. Now, I’m able to share updates on my eyes and my health, but it’s also become a travel newsletter, which I never could have predicted when the idea of leaving New York felt like such a distant notion to me. It feels daunting to travel with an autoimmune condition - it still does sometimes. You can’t overdo it, you need to be cautious of your limitations, you have to always be aware of ways to get necessary medications or see the right doctors in a moment’s notice. But it also feels fucking great to feel free again, to be able to explore the world and do what I want without asking a doctor for permission first. 

Over this past year, I’ve learned a lot. I’ve learned about the importance of sharing about your health and being able to lean on people in your life when you need help. I’ve learned about finding community, and loving myself. I’ve learned about letting go of the past, of so many traumatic memories and places, and trying to be okay when they resurface. I’ve learned to be smarter when it comes to travel insurance (I accidentally cancelled it while I was away, it was a nightmare). There’s still a lot more learning to do, but I’m grateful for all the expansion I’ve been able to experience this year. 

Since this feels like a good time as any to reflect on the year (It’s September so it’s officially Staples back to school season, the most meditative of times), here are some stats from this past year: 

-I visited 4 continents and 8 countries 

-I’ve seen doctors in the US, Indonesia, Thailand, Singapore, and Australia 

-I was hospitalized on an island in Indonesia for Covid and pneumonia 

-I’ve been sober for over two years

-I’ve learned new skills I feel deeply passionate about, like meditation, facilitating writing workshops, and DJing ;) 

-I was surrounded by beautiful nature and animals, and saw many turtles and monkeys and cows and whale sharks. 

Although I do have more to share about the rest of my travels, I did want to share some recent news. Since being back, I saw my eye doctors and was told my eyes looked great. In fact, one of my surgeons told me I looked so good that they didn’t think I would need eye surgeries anymore, and an injection now and then would be enough. As soon as I heard this, I cried tears of joy.

Before I left, a different surgeon told me I had one good year left with my implants, and then they would run out. I think that’s part of the reason I’ve been living so hard. I always had his voice in my head, telling me my time would run out soon. So I tried to push myself to do it all, in case I wouldn’t get the chance. But at a certain point, even before I came home, that didn’t feel true anymore. I felt healthy, and happy. I didn’t want to live from a place of scarcity and fear anymore. I just wanted to do whatever I wanted and be the one to decide, rather than letting this fear of my body breaking down again control my life. Still, it felt even better for it to be confirmed by my doctors, to see it in the images they took of my eyes. For the first time in nine years, I had good news about my eyes. I was okay.

And then, in a fun twist, I got not so great news the follow week. I had gotten an MRI done, and it turned out I had lesions in my brain and spinal cord. I have no physical symptoms, and the neurologist hasn’t given me an official diagnosis, but they believe it looks like MS (multiple sclerosis) could be progressing.

Pre-MRI in this nice ass hospital gown?? Glad medical care in the US is finally stepping it up.

The news is still very fresh. I had the MRIs re-done in case there was some mistake, but the lesions were all confirmed yesterday. So, now it looks like it’s time to get more opinions and gather more information. Usually, in these circumstances, I have the instinct to run. In fact, over the past week, I have booked and cancelled two separate flights. I very much do not want to deal with any of this, and a small part of my brain still hopes it is all a mistake. But I’m trying to do things differently this time around, and embrace what is happening. To deal with it, so I can travel again, but it can be out of joy, and not fear. I didn’t want to share anything just yet because I’m still gathering information, but also, this is what this newsletter is supposed to be for. Sharing with people who I care deeply about, rather than going through it alone.

When I first got the news, my first thought was, “It’s just too much.” I had one single week of good news about my eyes, before being told I had yet another autoimmune condition I would have to deal with. In my opinion, I would like more than a week. At least a year maybe, or five if I’m being greedy. But the second thought I had was, “What can I learn from this?” How can I tackle this new autoimmune obstacle in a way that takes what I’ve learned from my eyes, and helps me navigate it in a healthier way? I think it starts with sharing with you, and not keeping my worries about my health to only myself anymore. If you have any MS-related recommendations or help to offer, or anything you’ve heard that has helped, I’m happy to hear it. But also if you have nothing to say about MS and just want to say hi, I’d love that, too.

So, here we are, a year later. There are almost 200 subscribers to this newsletter, and I’m grateful to all of you for reading along! It truly means so much. And if you enjoy this newsletter, I’d love for you to share it or pass it along to anyone you think would enjoy it.

Thank you for supporting me through this. Thank you for always checking in, for reading, for letting me know what you thought of a newsletter. It’s been an honor, and I’m grateful for the way it’s helped me open up as a person and connect more to everyone in my life. I love you all! 

-Julia