After reading through her Substack, I found that she was also living with multiple sclerosis. In 2018, she was diagnosed, and it had greatly impacted her life and work. She incorporated her experiences as a single mother living with a chronic, degenerative illness, and portrayed it through her art.

I myself was diagnosed with multiple sclerosis in 2018, and art has always been a powerful way for me to embrace and move through my illness. I was curios to know how MS had affected her own life and how it had informed her creative practices.

I got the chance to speak to Katharine about her diagnosis, making art, and adapting her artistic process. You can read the full interview below.

Julia Edelman: I’d love to start at the beginning. Can you tell me a little about your background and how you came to your work as an artist?

Katharine Jacobs: I grew up in a tiny rural town in the Sierra Nevada foothills—about 600 people. My parents were social workers, and I spent a lot of my childhood around conversations about mental health, privacy, and community care.

Art entered my life pretty early. When my parents divorced, I was struggling in school and was placed in a program called Special Friends, where we mostly painted and made things. Looking back, that was my first experience of art as healing.

I’ve always made art. I went to art school initially focusing on photography, particularly large-format portraiture. In my early twenties, a friend and I traveled to all fifty states photographing strangers with a Polaroid process that was being discontinued. That project became my undergraduate thesis and really shaped how I thought about storytelling, community, and image-making. But my relationship to art changed dramatically after I became ill.

JE: You were diagnosed with MS shortly after becoming a mother. What do you remember most about that period?

KJ: Chaos, honestly. My daughter was born in 2017, and within months I started experiencing strange symptoms—numbness in my feet, weakness, sensations I couldn’t explain. Initially, a lot of it was dismissed. I was told it might be a bulging disc or something related to postpartum recovery.

Then one morning I woke up and the entire right side of my body felt numb. Not pins-and-needles numb—just absent. My clothes felt wet against my skin because my nervous system couldn’t interpret sensation correctly.

I took my baby to urgent care with me because I didn’t have anyone else to help. From there began months of testing, MRIs, second opinions, and trying to navigate the healthcare system while also being a new mother.

The diagnosis itself wasn’t one singular moment. It was a long process of realizing that my life was changing in ways I couldn’t control.

JE: How did MS impact your creative life?

KJ: At first it completely disrupted it.

I was teaching photography and darkroom classes. I had spent years building toward that career. Suddenly I couldn’t stand for long periods. I couldn’t spend hours in the darkroom. I had a baby to care for and a body I no longer trusted. For a while it felt like I’d lost access to the version of myself I knew. But eventually those limitations forced me to find new ways of working.

I started making cyanotypes because I could create them outside with my daughter. We could expose prints in the sunlight while she played nearby. The process felt more compatible with my life.

Around the same time, a doctor mentioned the correlation between MS and vitamin D deficiency. My artist brain immediately latched onto that idea. I thought, “Fine. I’m going to work entirely with sunlight.”

It wasn’t a logical decision—it was more instinctive. But it opened a door.

JE: You’ve worked with photography, installation art, sculpture, and ceramics. How did that evolution happen?

KJ: Grad school was a turning point. I entered an MFA program as a photographer. Photography had been my identity for years. But once I got there, I started questioning everything about my practice.

I was trying to make work about disability, pain, and illness, but I felt trapped by the expectations around photography. People would suggest things like documenting doctor’s appointments or photographing my treatments, and none of that felt true to what I wanted to say.

Then I took a ceramics class.

A professor told me something that completely changed my thinking. He said, “The thing that’s great about clay is that if it’s made with your hands, it’s already about your body.”

That was incredibly freeing.

I didn’t need to explain my illness through images anymore. The act of making became part of the meaning.

JE: What does making art give you now?

KJ: I think there was a period after diagnosis where I felt like I’d lost my body. Not literally, but emotionally.

Pain and numbness make it easy to feel disconnected from yourself. For years I was operating from this belief that my body had betrayed me. Making art helped me rebuild that relationship.

Especially ceramics. It’s physical. It requires touch, repetition, presence. It reminds me that I still have a body—even if it works differently than it used to.

My work has actually become less rigid because of that. I used to feel like every piece had to carry a huge conceptual framework. Now I can make a strange little ceramic figure and trust that it’s carrying meaning because it emerged from my lived experience.

That shift has been huge.

JE: Your videos documenting cyanotypes and studio processes have reached a large audience online. What drew you to sharing your work publicly?

KJ: For a long time I used Instagram mostly to promote workshops and classes. Then I started sharing more of my personal work, and eventually more about my illness.

The cyanotypes really changed things because they’re inherently accessible. I didn’t invent the process. I didn’t invent flowers. It’s one of the oldest photographic techniques in existence.

There’s something generous about it. I don’t feel protective of the knowledge. I want people to see exactly how it’s done.

The videos became a way to invite people into a process they might never otherwise encounter. And from there, they often discover the larger conversations around craft, creativity, chronic illness, or art-making.

In some ways the cyanotypes are the doorway.

JE: You’ve spoken openly about living with MS online. Has that changed over time?

KJ: Definitely. At first I was documenting things like my infusions and medical experiences more directly. But over time I became interested in a different question: How do you talk about illness honestly without making it the only thing people see? It’s a difficult balance.

Illness shapes every part of your life, but you’re also still a whole person.

That’s one of the reasons I love Substack. It allows for complexity. I can write about art, disability, motherhood, social media, or whatever else is on my mind without having to separate those identities.

JE: What advice would you give artists living with chronic illness?

KJ: I think radical acceptance is a big part of it.

Not giving up. Not surrendering. Acceptance. This is the body you have. This is the life you have. What can you build from here?

Pain tells you to stop moving. It tells you to become smaller. For a long time I listened to that voice.

Ironically, I started feeling better when I began making things again. When I allowed myself to move, to create, to participate in my life despite the discomfort.

I’m still on the same medication. Nothing magical changed. But I stopped waiting to become someone else before allowing myself to make work.

JE: I always like to ask about tiny joys. What are some joys you’re looking forward to right now?

KJ: My daughter, always. She’s nine now, and getting to spend time with her is one of the great joys of my life.

My studio cat. The ridiculous things he does every day. And honestly, just showing up in the studio.

A friend once told me, “If all you do is sweep the floor, that’s still art.” I think about that a lot. Sometimes we put so much pressure on creativity to produce something extraordinary. But often the most important thing is simply walking through the door.

Showing up is enough. And you’d be surprised what happens when you do.

Katharine Jacobs is an interdisciplinary fine artist based in California, best known for her botanical cyanotypes, ceramic sculptures, and helpful videos on the creative process. She integrates sculpture, alternative process large format film photography and textile construction in her multivalent work.

Her work has been featured in gallery exhibitions in San Jose, Santa Cruz, Roseville, Dutter Creek, Palo Alto, Santa Monica, Pine Grove and Jackson, California as well as Hillsboro and Portland Oregon.

You can find more of her work through her Substack, website, Instagram and Tiktok.

The morning I arrived in Athens, I took the train into the city, telling myself I was not only saving money, but also I would beat the jetlag if I was forced to stay up and alert on public transportation. After a 10 hour flight, I found a seat on the train, delirious with exhaustion. I asked the Greek man next to me if I was getting off at the right stop, pointing at a paper map an airport attendant had handed to me. He told me he would tell me when I should get out and I could go with him, since we had to transfer at the same spot.

He had just come back from visiting another Greek island, but lived in Athens. He kept his sunglasses on the entire time. His English was a little shaky, but it was enough for us to have a basic conversation. I told him how I was meeting my friend in Athens now, and we were traveling together.

When it was time for our transfer, we left the train together. He asked to exchange Instagrams. “By the way, I know I do not speak good english, but I know the language of the body, and I could teach it to you.” I stared at him blankly. It was 10am. Was he saying what I thought he was saying? He continued: “I don’t know if your friend is interested, but I can share the language of the body with you and your friend together, or just with you if you prefer. You tell me.” Still, his sunglasses stayed on as this man insinuated having a threesome while we stood there in the athens train station. I started laughing, unsure of what else to do. “Uh, sure, I’ll let you know. Thanks for the help.” He nodded, and walked away towards his train.

After athens, we moved on to paros.

The rest of greece went a lot like this: we would have beautiful feta and tomatoes, and swim in clear blue water, and then, like clockwork, the greek men we met would ask me and my friend for a threesome. It was very strange, as if they had never just seen two friends traveling together before and didn’t know how to react.

one night, we were invited onto a greek man’s boat that was docked at the port. His friend was there too, but the double date would have been nicer if the boat was moving. I asked him if he would teach me how to fish, and even though it was past midnight, he got a rod and attached tuna to it. He was surprised I wanted to learn. “Of course,” I told him. “Teach a woman to fish, and she eats for life, etc” But I would leave the line in too long and all the bait would be gone when I brought it back up.

I left the boat hungry, but then a man offered me free gelato from his shop on my way home, so really, it all worked out.

italy

when I arrived in Polignano a Mare, I was incredibly sick. In fact, I was coughing so much on the plane there, that a stranger on the plane gave me her half-finished water bottle, and I just went for it because I was already sick anyway- what’s a few more germs?

I got there on a weekend, in the blazing heat. I soon learned that the pharmacies are closed both saturday and sunday, and also from 1-5pm for siesta time. Stumbling back to my airbnb to sit directly in front of a fan at high speed, I missed cvs and duane reade so deeply in that moment. they would be open for me, with welcome arms.

later that night, pretty confident I had a low-grade fever, I asked a pizza restaurant if I could take food to-go to eat in my room, since the idea of sitting outside, sick and in the heat felt like a nightmare. She looked at me like I was crazy. “No. You order food, you eat here. No take away.” I nodded, ordered the smallest pizza they had, and went back to my room.

when you visit a place and are feeling great, these small things don’t matter. But when you travel and feel like shit, you really start to miss cvs and being able to order take out.

Once I started feeling better, I met up with friends in Monopoli, a small town I visited last summer and fell in love with. It’s on the Adriatic sea, with bright white walls, and streets that let you get lost in a wonderful, tiny maze.

I was very excited to be back in italy, because I had been taking italian lessons for the past 3 months and wanted to test it out with the locals.

Over the next few days, there were several instances where I felt really proud of my Italian:

1. I got into a fight with a taxi driver for charging me 20 euros extra just because I was a tourtist, so I told them I’d rather get out, and they left me on the side of the road. while it was stressful, I thought, hey, that was all in italian!

2. At a music festival I went to called Polifonic, my friend and I met a man there, who she decided was very creepy. While he intended to spend the rest of the night at the festival with us, she told me he kept trying to touch her, so I told her I’d take care of it. She went to the bathroom, and I told him she was uncomfortable with how he was touching her, and we just wanted to spend the festival together without him. He didn’t understand. So, I was forced to try in broken italian: “Il mio amico è triste e vuole solo stare con me stasera, scusa.” which probably sounded like, “my friend is sad and just wants to be with me tonight, sorry.” Somehow, he understood, and respectfully left! He did text me immediately asking to come back and join us, but still. progress.

   

3. I offended someone in italian with a joke! Usually, I am just used to doing this in English so this was a big step.

   Another man at the same festival, who also wanted to hang out with me and my friend, told us to wait with him and the rest of his friends would join momentarily. We agreed, got a drink and waited, and after about 20 minutes they still never came. As a joke, in Italian, I said, “Se non hai amici, va bene!” which translates to, “if you don’t really have friends, it’s ok!”

   He was deeply offended. My friend started laughing, and had to explain. “She’s just being sarcastic. She knows you have friends” He shook his head, upset. It was then I realized that while I love speaking Italian, my dry, sarcastic humor will always be a bit more french. and that’s ok.

   ---

One night in Monopoli, we were sitting outside at a bar in town, when a group of friends walked by as they were leaving a salsa class. One man had his arm in a cast, and he came over. I asked if I could sign his cast, and when he said yes, I got a pen. He told me he got into a motorcycle accident, and asked me to draw a motorcycle. I did my best, and wrote my number underneath the motorcycle.

The next day, he texted me asking me to go to dinner. While I spoke basic Italian and was starting to feel more comfortable, he spoke no English at all. He said a friend would join us for dinner, and that he spoke English very well. So, that night we drove twenty minutes outside of Monopoli to a restaurant where you pick out the meat with the butcher, and then they cook it for you. We sat around, speaking in fragmented Italian and English over different meats. I wasn’t sure what I was eating most the time, but was here for the ride.

His friend was obsessed with New York, and asked me questions like, “Is it true there are squirrels in Central Park?” After dinner, we drove home, speeding through the streets, blasting Rino Gaetano, and I thought, this is my favorite part of traveling. Or, being alive. Finding myself in these seemingly ordinary experiences, wondering how I ever got there in the first place, driving in a car in the countryside with two random Italian men because we started talking in the street. It was so simple, but also if all these other moments hadn’t happened, I’d never have had the chance to be there. And it made driving home that night feel special, somehow.

On one of my last nights in Monopoli, I had a religious experience. I made the questionable decision to go to a night club in a town in Ostuni, 30 minutes away from Monopoli, and taxis do not really exist there. Locals just call their friends to pick them up. So after dancing until about 3am, I was ready to go home. But this was not possible, so I stayed until sunrise, exhausted, until we somehow found a taxi around 5am. But on the way back, suddenly, the car broke down on the highway. The driver started hitting the wheel of the car, cursing in Italian, and kept re-starting the car. At that point, more tired than I’ve ever been in my life, as the sun came up, I prayed. I prayed that I would make it off this highway, back to my bed in Monopoli, away from this driver who was cursing in Italian while blasting techno music, and just then, the car started.

france

Still sick, but pushing along to the end of my journey, I made it to paris. I was there for my cousin’s bar mitzvah, which was a big deal. Most of the rest of my family lives in paris, so it always felt important to make it for special occasions.

The next morning, we piled into the car to the temple. My uncle drove me and my sister, along with my grandparents. It was an hour away, and we had some time to kill. “Have you been to this temple before?” I asked my grandmother. “Bien sûr. Nous nous y sommes mariés il y a 67 ans.” Of course. We were married there 67 years ago. I had no idea. Now I was even more invested to go to this place that was part of my family’s history. Next to me, my sister laughed and whispered in my ear. “6-7,” she giggled.

Once we got to the temple, we saw all our french family together in one place. I sat in the pew and loved watching the kids of my cousins all playing with each other. Once the bar mitzvah began, my grandmother noticed my grandfather was crying. But I understood. My grandfather escaped the holocaust, and here he was, being able to be openly jewish in france, and watch his great grandson get bar mitzvahed. How could he not cry? In a time when it often feels unsafe to sometimes even share you’re jewish, to be able to openly celebrate this milestone with all of my family in a place that’s been, well, historically pretty anti-semitic, felt really powerful.

The rest of the trip was filled with trying to find the best oeuf mayo in the city with my sister, reconnecting with friends, and spending more quality time with my grandparents.

One of my favorite nights there was spent going through an old photo album from my grandparent’s wedding at that same temple, and seeing all these past generations of my family there, together celebrating.

The one downside was that while the quality time was wonderful, my grandparents did not have AC, and it was nearly 100 degrees. While my grandparents seemed totally fine, when I looked over at my sister, she looked like she was about to pass out. A sign it was time to go.

new york

Finally back home, I dropped my bags off once I arrived from the airport, and headed right to cvs. Still sick two weeks later, I was excited to get the drugs that were deemed too harmful in europe, but would hopefully do the trick. I stepped in through the automatic doors, and immediately the rush of AC overwhelmed me. It was colder in that one cvs than in all of france, and in that moment, I knew I was home.

Julia Edelman (JE): So you said you’re in Arizona now—how long are you going to be there?

Ali DiGiacomo (AD): We’re in Tucson until this coming Monday, then we’re going to Phoenix for two weeks, and then Petrified Forest. So we’re in Arizona for the next month.

JE: Nice. Do you have a plan, or are you just kind of feeling it out as you go?

AD: We’re trying to hit all the national parks—not this year, but in the long run. We want to see all of them, so we kind of follow them as we go.

JE: And you just started this Airstream adventure recently?

AD: Yeah. We were originally looking at houses in the Catskills—tiny A-frames and cabins—but a lot of them were being bought up by people turning them into Airbnbs. We wanted to actually live there because we had spent a month or two there the year before.

So last August we put in a bid on a house. I literally said, “If we don’t get this house, we’re getting an Airstream.” And we didn’t get it. The next day we called an Airstream dealer, and had the trailer within a week.

It felt like a blessing in disguise. That was last September, so we’re still new to it—about six months in.

Living with chronic illness

JE: When did your chronic illness journey begin?

AD: I have rheumatoid arthritis, and I also have something else we still haven’t been able to figure out. I have really intense chest pain—worse than the RA—and it’s been going on for about 12 years. It feels like a heart attack, and we still don’t know what it is. It doesn’t seem connected to the RA, so it’s very strange.

I was diagnosed with rheumatoid arthritis when I was 15, living in Connecticut. I was a competitive swimmer—Junior Olympics level—and it was my whole life. Then one day my knee filled with fluid and I couldn’t even stay afloat in the water.

We thought it was an injury at first, but swimmers don’t really get injured like that. They drained my knee, did MRIs, and eventually found a tumor. They removed it and it was benign, so I went back to normal for a while.

I didn’t tell anyone at school what had happened. It all happened over a summer. But my swimming career kind of collapsed after that surgery.

Then six years later, in college, it came back in a much more severe way. I had to quit my first job after graduating because I was working in film and on my feet all day. My knee kept filling with fluid.

At first I was in denial because it was only in one joint, and RA usually affects multiple joints. I got tested for everything. Eventually, after another surgery, they confirmed it was rheumatoid arthritis. My joint was severely damaged, and I had to start medication.

I didn’t know anyone else with RA or any chronic illness at the time.

JE: I can relate. It took a long time for me to share my diagnosis. I think a part of me was also in denial.

AD: Yeah, I kept my diagnosis secret for a long time, so a lot of people didn’t even know. When I finally started posting about it, things shifted.

Now most of my friends also have chronic illnesses. Earlier on, there were definitely tensions—I was very negative at times, and I understand that can be hard to be around.

But now I really value friendships where people can actually understand what you’re going through. It’s different talking to someone who has been on the same medications or experienced the same side effects. That kind of understanding is hard to replace.

Connecting through humor

JE: How did that lead to sharing videos online?

AD: Around 2017 or 2018, I made an Instagram account just for my chronic illness. I wanted somewhere to vent, and I also wanted to share something positive. I started posting under hashtags like methotrexate and slowly found other people going through the same thing. That alone made me feel less isolated.

Then I started making funny videos about it. It helped me cope, and it also made other people laugh. During COVID, one of my videos went viral.

JE: Are there certain kinds of videos people resonate with most?

AD: Definitely the mental health side. We can talk about pain all day, but the hardest part is what it does mentally—especially with invisible illness, because people don’t always believe you’re struggling.

People really connect with dark humor. There’s something about laughing at it because otherwise it can feel unbearable. And it also just helps people feel less alone. There are thousands and thousands of us, but it often feels isolating until you see that community.

JE: Your videos have a lot of dancing and joy in them. Have you always been like that?

AD: I’ve definitely come out of my shell more. I went to film school and did acting classes, but making these videos made me way more outgoing and expressive.

There was a period where the illness kind of took over my identity, but creating and sharing helped me feel like myself again. I went from being really quiet in high school to becoming more loud and outgoing and the person I am today. And I’m very proud of her.

Travel and illness

Speaker: What has it been like traveling with chronic illness?

AD: It’s complicated. I’m on Medicaid because I freelance, and they won’t ship my injections outside of New York. So I’m actually going off my immunosuppressants while traveling.

I chose traveling over staying in one place for medication access. I didn’t want the illness to stop me from doing this. My partner and I had wanted to do this since 2019.

But it’s risky. I’m essentially unmedicated for the first time since 2018. We’re going to see how it goes.

When I traveled in Italy before, it was already difficult—keeping medications refrigerated, moving between cities, constantly planning around it. Even in the Airstream, we have to manage refrigeration constantly. It takes up space and energy.

Sometimes I just want a break from doctors, from injections, from thinking about it all the time. Even if it’s just for a few months.

JE: What would you say to people who want to travel but are afraid because of health conditions?

AD: I’d say: make a plan with your doctor. Talk to your specialist ahead of time. See what medications you can bring, whether you can get 90-day supplies, whether you can switch formulations that are easier to travel with.

Have a plan A, B, and C. And be honest with your doctor about worst-case scenarios.

But I wouldn’t let fear stop you. Prepare as best as you can—but still go. Bring medication, bring backups, bring what you need. And accept that sometimes things will go wrong and you’ll deal with it when it happens.

I’ve been sick while traveling before, and I just had to rest for a few days. It wasn’t ideal, but it was still worth it.

Small joys

JE: What are your small joys right now?

AD: Coffee. Every morning I look forward to it. I call it my “first sip.” I even post it on Instagram—like a little ritual. I dance and have my first-sip. Even something like whipped cream in my coffee can completely change my day. It’s small, but it makes me really happy.

You can follow Ali on Insta (@AnotherDayWithRA) or on TikTok! (@AnotherDayWithRA). She also has her own fitness app, which you can check out here!

“Not really, I’m just trying to eat healthy,” he said.

I had also been on a health kick recently, but it was more due to starting the egg freezing process. Something I wasn’t necessarily planning to share right away.

“Me too,” I said. Even though I had decided to stay vague, I asked him more questions. “Why have you been eating healthier?”

“Well, I just beat cancer,” he said.

There it was, hanging in the air, five minutes into our date.

“So now I want to make my body as healthy as possible to get it strong again,” he continued. “I’m just focused on living as well as I can, and doing whatever makes me happy.”

I nodded slowly. I told him I could relate. Even those my health issues were different, I shared how they had completely altered my perspective on life.

Before we had even gotten our appetizers, we shared our desire to live as fully as possible and our distrust of doctors. I was struck by how easy it was to talk to him, and I realized it was largely due to the fact that I had been able to be honest about myself and my health right away.

Normally, with dates, I still shared this part of myself, but braced for the inevitable moment where they would respond with a “Oh, damn, that sucks,” followed by an uncomfortable silence I tried to quickly wave away.

“Well, I’m okay now, so don’t worry,” I’d say, to make the date feel normal again.

But none of that had to happen. There was no hiding. Just shared vulnerability and lots of medical trauma. For once, I felt fully open to be myself and hadn’t felt that way in a long time. He walked me home and showed me a recent impressive sculpture he had made in pottery class of his face.

“Can I kiss you?” he asked me.

I was just getting over a cold, and knew he was probably immunocompromised. I told him that we should probably wait, but I did want to kiss him. He nodded.

“Thanks for telling me,” he said. “If you’re feeling better tomorrow, can I come see you and kiss you?”

“Sure,” I said, smiling.

Read more

“Congratulations!”

“Good for you! Are you excited?”

“You should be really proud.”

“Oh shit. Should I be freezing my eggs, too?”

These are the reactions from men when I tell them:

“Oh! How old are you?”

“I thought you were supposed to be really old to have to do that. But you look pretty young.”

But to be honest, it’s been hard to know how I should feel or react.

When I first had a Zoom with my doctor to discuss egg freezing, and he talked about the importance of getting as many good eggs as possible, all I could think about were chickens. We weren’t so different.

Their eggs were being taken and refrigerated and sold in supermarkets. Mine were being frozen and kept in a storage facility in New Jersey.

As my doctor went on about how the actual procedure would work - after two weeks of injecting myself with hormones, I would go under anesthesia and they would retrieve the eggs - I froze with fear. I’ve had a lot of horrible experiences with anesthesia throughout my eye surgeries. Often times, they wouldn’t give me enough, and I’d need to go through the surgery in excruciating pain, while still needing to lie completely still since they were operating on my eye.

I continued to ask more questions about the procedure when he stopped me.

“Don’t worry. You can trust us,” he said over Zoom.

Just hearing those words from a doctor made me tear up. Realizing how little trust I have in all doctors, because of my many awful past experiences.

I nodded, unable to speak without crying, and he told me to get scheduled to move forward.

There is something very strange about going through a medical procedure of my own free will. I am so used to being forced into surgery and making panicked medical decisions, backed up against a wall, that there is something that feels almost wrong about choosing to do this to myself.

This month I finally got great news from all my doctors — my eyes are looking healthy, my MS is stable, and yet this is how I’m deciding to spend this period of long awaited health? With more doctors?

I meant to this do last year, but my most recent surgery got in the way and I wasn’t able to. So, a part of me also knew that I had to act now while I could.

I went ahead and scheduled all the necessary appointments and ultrasounds and bloodwork, because despite my fear and trauma around a new medical procedure, I think a part of me still wanted to do this. Whenever I’m undecided, but I see myself going through the motions of making the option possible, that is how I know I’ve decided. As if my body has decided for me before my mind can catch up. I follow where my feet take me, and it just so happened that they were taking me to the NYU fertility center.

A lot of the decisions around this hinges on my future self. Do I want kids? Do I not? Either way, it felt like a safe option. Like getting a refundable ticket for a trip in case I changed my mind.

The problem is, my future often feels very unclear to me. It’s so hard for me to see too far ahead, and now, for once, I felt able to make that decision. What I would actually do in the future, I still wasn’t sure, but they were baby steps in some direction.

And that’s been a noticeable change in me lately. For a long time, I felt paralyzed with fear, and the idea of making the wrong move. But now, I feel more confident in making a decision, seeing what happens and being ready to learn from it.

Last week, I started my injections. I was terrified to do it on my own, so my friend Eve came over to help me. We sat at my kitchen table, drinking La Croixs and watching the same tutorial videos on Youtube over and over again, trying to tune out the awful royalty-free music playing each time we played the video.

I wondered if the woman in the video for CVS pharmacy was a real nurse, or a paid actor. When people asked her what she was in recently, would she send them the Follistim tutorial link?

After learning how to properly mix the medication, and insert it into the syringe, I injected myself with the first one. By the second one, my hands were so sweaty from nerves, I needed to have Eve do it because I couldn’t press down on the syringe.

When we were finally done, I felt a wave of relief. I had to do this every night, I remembered with a panic, but at least it was over and I felt so grateful to have a friend there with me to help.

I cleaned up the syringes and medications after Eve left, and jumped in the shower. I had to get ready for a date.

Pregaming by injecting myself with hormones is now by far the strangest thing I’ve ever done before a date.

When I go in for regular monitoring once the injections start, I’m struck by all the other women there, too. Two long lines of hallways are filled with women on their phones, disassociating. It feels both terrifying, to see this almost factory-like operation, and also comforting, to see so many other people also going through this.

Sometimes, there are couples there together, or the lone guy in a sea of women sitting there by himself. I passed by a very cute guy the other morning, and had to remember he most definitely was not single if he was at a fertility center at 8am.

All I will say is that going to yoga to meet women is a dumb tactic when everyone should just hang out at fertility clinics early in the morning.

It’s now been over a week, and my stomach is all black and blue from the injections each night. I’ve also been much more emotional, which I knew would happen, but still doesn’t make it any less weird. One day, I’ll find myself walking to Trader Joe’s and think, “Does anyone even care about me?!” and then the next day I’ll be completely fine and can’t remember what I was crying about.

I’ve also been trying to move slowly, and not make as many plans. To let myself rest more and to eat healthier. In a way, I was already on a health kick when spring started, so this just feels like a more extreme version of that.

When I left the doctor today, I was told that the egg retrieval procedure will likely be on Monday or Tuesday. While I’ve been trying to embrace this experience as best I can, I’ll be very relieved once it’s over.

I thought because of all my experience dealing with medications and appointments for my health conditions, this would be easy. But it’s been a lot to handle and keep track of. I’m both grateful to be able to do this at all, and also very happy for it to be done.

A few blocks over, in Midtown, I passed this on the street:

For some reason, I was really nervous to write about this experience. Even though I already write pretty intimately on here about my health, this felt different, even more private, and I was avoiding this newsletter. But I’m trying not to let the literature, or the chickens, or the egg freezing discourage me, and simply move forward the best I can.

Love,

Julia

So, I wanted to try something a little different this week. As many of you know, I offer in person meditation and journaling workshops. I love these events because it’s a unique time where friends and strangers can come together in this moment of pause, and step out from the chaos of life to reflect on their lives while in community.

But Substack is it’s own amazing community, which is why I’d love to share some prompts that can hopefully inspire you as this new season unfolds.

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“I can function,” I replied. “My right eye does most of the work.”

He nodded.

“But are you okay? Is there something else we could be doing?”

I wasn’t sure what answer he was looking for.

“I appreciate you asking, but you said my vision won’t improve. I’ve come to terms with the fact that my vision is gone. I’m just grateful for what I have left.”

Of course I got angry and sad thinking about it. Sometimes, I’ll just get disoriented and remember why. But then it passes, and I let it go, because there’s no point in lingering over something I can never change.

“That’s good,” he said. “You know, out of all my cases, you’re in one of my top five hardest ones. You’re really tough. Your eye was on the verge of collapsing.”

“Don’t tell me that,” I say.

This surgeon is one of the best at what he does. People fly from all over the world for him to take their case. So, when he tells me that out of all of that, I am still one of the worst and hardest cases he’s had, it’s difficult to hear. Sometimes I try not to think about how bad my situation is. I tell myself there is always worse, or more complicated. This is probably nothing. But here was my surgeon, who has operated on the back of my eyes twice, telling me it really was that bad.

It makes me feel a mixture of pride that I can really withstand anything. That I know I can take on whatever comes my way. And also deep sadness and fear, recognizing how dire it was and has always been. That I’m always on the edge of going blind, and my doctors are always terrified.

He asked me to lean in so he could examine me. I hadn’t seen him for several months, and was hoping for good news. But he looked troubled.

“I saw some inflammation in your left eye. Maybe it’s nothing, but go get it checked out.”

I went to my other doctor, who specializes in uveitis. He confirmed that there was indeed more inflammation than usual. Uveitis is the disease that started me on this hellish journey to begin with. It was so unmanageable that after endless treatments, the only option left to help me was invasive Retisert surgery where they would put steroid implants in the back of my eye. This led to 7 surgeries. 2 to put in the implants, and 5 more to manage the glaucoma caused by the implants.

But at least, despite 6 years in and out of surgery, the uveitis was better. Until now.

“I’m sorry, you’re no longer in remission. The uveitis is back,” my doctor told me. The words hung in the air, hard to believe or process.

I stumbled home, crying. I couldn’t believe this was happening again. I really thought, maybe after all this time, I was safe.

But it felt like a monster that had woken up and was coming back for me. I could travel and try to pretend I can have a life where I can exist and this isn’t all that consumes me, but when I come back home and meet with my doctors, it all floods back.

There was a moment, in my last week in Thailand, when I was sitting on a beach on an island so remote, it took a 9 hour boat to get there and I was nearly in Malaysia. Sometimes, going as far away as possible excites me, because I can sit there and think, maybe here, I can feel far enough away where my disease can’t get me, and I can simply exist. I can just be happy.

Yesterday, I went back in to see my uveitis doctor. He had put me on a high dose of steroid eye drops to see if that could be enough to stop the inflammation. He noted that it had improved slightly, but not by much. Still, he suggested we taper down on the medication.

This was my first time working with this doctor, so he has never seen me in a time of crisis. He didn’t know how bad my eyes could get. I explained that before, it was extremely aggressive. So, he changed his mind.

“Okay, how many hours are you awake in a day? Use the drops every single hour.'“

I was thrown by the sudden change in directions.

“But you had just wanted me to lower the dose a moment ago. This is a really big difference.”

He started getting frustrated.

“I’m not changing my mind again. This is what we’re doing.”

He started walking towards the door.

“I’m sure you have PTSD from all this,” he said. “If you really don’t trust me, go get a second opinion.”

This was not the first time a doctor responded to my questions about my health by telling me to find another doctor. It wasn’t even the second time, or the third.

I got it. Questions seemed to signal to doctors a sign of disrespect. But why couldn’t he see it wasn’t about that at all? That it was simply about advocating for myself and better understanding the situation.

I tried to explain that I was happy to do whatever he said, I just wanted to know why.

“You can see what’s happening in my eyes,” I told him, my voice shaking at the point. “But I can’t. So this is just how my brain works. I want to understand what’s happening to my body and your reasoning behind it. That’s all. It’s not to disrespect you. It’s simply to understand what’s going on.”

Finally, he softened. “Okay, fine.”

“So, do you still want me to get a second opinion?”

“No,” he chuckled. “Don’t see anyone else.”

The two other nurses watching this interaction also laughed.

But I wasn’t laughing. It was clear that he only told me to get a second opinion because he didn’t like that I was asking questions. And once I explained, he took it back. It wasn’t out of any good intentions for my health. It was simply to teach me a lesson that patients aren’t supposed to talk. They’re only supposed to listen. Otherwise, I could find care elsewhere.

But what kind of medicine is this? And why is this so often the case?

I’ve been dealing with health issues for over a decade now, and through those years have learned to be the best health advocate I can be. But sometimes, it felt it was hurting me more than helping.

I don’t want to say this is the case with all doctors. But as someone who has been been battling two autoimmune conditions and met with endless doctors, it’s far too common.

I know my doctors are doing the best they can to help me. And I’m sure, on a certain level, they’re scared. I’m this weird case that no one can ever solve. One of my surgeons routinely brings up how he shows off a video of him operating on me all the time at eye conferences. When he asks them what they would have done differently, he told me one them just responded, “I wouldn’t take that case at all.”

So, I know my case is beyond difficult. Top 5-most-difficult-cases-level-difficult. I don’t take their help or efforts for granted.

But I do still hope the way medicine is practiced can change one day. That asking questions and advocating for yourself is lauded, rather than punished.

Until then, I’ll probably keep asking my questions anyway.

I had actually been to Shambhala three years earlier, also accidentally. I was studying meditation at a monastery called Pa Pae in northern Thailand, nestled between Chiang Mai and Pai. My phone was off, and I was trying to be as focused as possible. Until one day, when an Israeli man joined for lunch and asked if I was going to the festival nearby.

“What festival?” I asked, eyes wide with excitement. Two days later, we left the monastery, went to Pai briefly, and continued on to Shambhala.

It’s a Japanese-run festival in the middle of nature, and even though the music is great (before Shambhala, I never knew what Japanese reggae was, or that I enjoyed it), it’s more for the social interactions you’d never experience anywhere else.

It’s also all completely DIY. Besides some pre-programmed musical acts at night, all the workshops are offered up by the people attending the festival by placing a post-it note on a board. If people want, they can donate to the facilitator after the workshop.

Now, three years later, it was fascinating to be back. To see how much it had grown. It was such an impactful festival for me that I am embarrassed to admit I was still wearing the “entry bracelet” from three years ago — a dangly piece of string and a single bead. I always thought it would fall off naturally, but it never did. I guess Thai string is made really well! But now that I was back (and able to see the difference just in entrance bracelets alone!), I felt like I could finally cut it off and let it go.

I camped by the river, where there were roaming water buffalo grazing across from me. You could see the mountains in the distance, and at night the stars and the moon were so clear and bright, it almost made me enjoy camping!

During the day, there were workshops for Qi gong, belly dancing, tantra and Japanese tea ceremonies. At one (of many) drum circles, Kumi, a facilitator from Hong Kong, explained the philosophy behind Shambhala. It wasn’t necessarily a festival, but more of a Buddhist utopia in action. This idea of community growing together.

You could really feel this as you witnessed the festival evolve, day by day. There would slowly be more food vendors, more artists, more musical acts, more fire performers. You witnessed it growing before your eyes. It also felt like everyone was there not to run around and see musical acts, but simply to exist.

To lay by the river and cool off during the heat of the day. To sit in the shade and drink a cup of coffee in the morning and get to know your neighbor, or play music with them. You got to watch everyone slowly wake up, teach each other, and learn together. One afternoon, I watched as a group of Thai kids were playing a game where they were blindfolded and trying to smash open a watermelon with a stick, like a piñata. The next morning, I looked for a mat to sit on to meditate by the river, and a man gave me his yoga mat, along with a mandala drawing he had made, just because he wanted to. There were so many small, fleeting moments that made the experience feel special.

On the last day of the festival, I noticed my legs had gotten pretty swollen with bug bites from camping over the past few days. I showed a friend and he was instantly alarmed.

“You should go to first aid,” he said, and begrudgingly, I agreed. I walked over to first aid, but no one spoke English, so they pointed me to the information booth. When I asked for first aid help, a very attractive French man sat me down.

“Yes, of course. I can help you, no problem. What you need is to gently massage all the bites with this oil.” He handed me a bottle with suspiciously no label on it, and started massaging my legs. While I didn’t think it would really help much, I had no other options. I was in the mountains, with no phone service or pharmacy for miles. I accepted this sexy French man’s oil massage, and went on with my night.

However, the next morning, my legs were incredibly swollen and irritated. The oil was clearly not a good idea. While I love hippies, they do not tend to have good medical care. That day, I was already leaving the festival because I had a flight to Indonesia.

While I desperately wanted to stop at a clinic or urgent care, I had no time.

I took a quick shower before the flight, and limped onto the plane. By my layover in Bangkok, my skin was on fire. I stopped at a pharmacy at the airport, and begged for any sort of antihistamine. The pharmacist kept asking if it was from bed bugs, but I only had ten minutes before my next flight, so I took the medication he gave me and went on my way.

By the time I arrived in Bali, I was in bad shape. All my bug bites were deeply irritated, and I was in intense pain. I waited on line in customs, trying to get the wifi to work. I asked the man next to me if his Internet was working. He looked up from his phone and shot me a smile.

“Yes, it’s working for me. Can I help?”

He was tall, with thick hair and circular wire frame glasses. He was traveling from Milan, and on his way to work in Australia, only stopping in Bali to break up the trip. He never got me onto the wifi, but asked me if I wanted to get dinner that night.

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This will be a chance to shed your winter layers, connect with this new season of yourself, and transform your intentions into art.

After being given a set of guided journaling prompts, you will be able to use what you’ve written to inspire a new acrylic painting.

Come meet other like-minded artists looking for a way to ground, connect and share work.

The venue will be at Rosa - everyone’s corner, a beautiful event space at 402 hooper st, in bk ny. The workshop will take place from 7-9pm!

Journals and art materials will be provided. You can purchase tickets here!

If you missed the last workshop in January at Recess Grove, this is your chance to come to the next one! Hope to see you there.

But it was hard for me to imagine the future. I was meant to go to Thailand the following week for a dance facilitation program, but it felt impossible to even believe I was going. I would only believe it once I was physically on the plane.

Later that night, I left dinner, and wondered why it was so hard for me to think past the present moment. And more than anything, to explain to others why it felt so challenging. I then remembered this idea of narrative wreckage, a term coined by sociologist Arthur Frank in his book, “The Wounded Storyteller.” It describes the breakdown of a person’s coherent life story due to overwhelming experiences like serious illness, trauma, or major life disruption, leaving them feeling unable to map out a future, and requiring a process of storytelling and self-reconstruction to find new meaning and coherence.

Frank described 3 main type of illness narratives: the restitution narrative, the chaos narrative, and the quest:

“Restitution involves a sickness which fully resolves, leaving the person “good as new.” The chaos narrative is the opposite of restitution; it has no order and provides no answers. It provokes anxiety in its revelation of vulnerability, futility, and impotence in the face of suffering. Finally, quest narratives meet suffering head-on. “They accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience.” Something transformative (learning or personal growth) happens through this type of illness story, even if healing is impossible.

I felt both of the last two types of narrarives deeply. There was chaos, to be sure, but also this desire to seek meaning and find transformation through this pain. I always felt that despite all the suffering, my illness had still changed me for good, into a more open, vulnerable person. That it was helping me seek something more.

A few days before I left for Thailand, I went on a date with someone I had known for ten years. We first met in a writing class out of college, and then they left New York. But he let me know they were in town for the week. I was surprised when they asked me out on a date— I always thought he only wanted to be friends.

It was nice to catch up after not seeing each other for a few years, to see how much we had both changed. We went to a diner and sipped hot chocolate. At the end of the night, as he walked towards the subway, he stopped and looked at me.

“You know, the last time we saw each other a few years ago, you told me something serious was happening with your eyes. I think you had just gotten surgery. And I could see something had changed in you. You were more open. Easier to talk to. I remember thinking, I wanted to know this new Julia.”

I smiled. I felt the shift too, but it was still surreal to have him mirror this sentiment back to me.

As I prepared for my trip to Thailand, I realized, maybe it wasn’t useful to keep navigating with my old map, my old narrative of how to live. Maybe I needed to create a new one entirely.

This mindset is how I tried to go into this trip. Initially, I was really anxious to go back to the same places I went three ago, afraid to compare them to my old experiences which were so life changing for me and put me on this path towards dance and community gathering. But it’s been better than I imagined.

The two trips have been so completely different. It’s been interesting to be in these same places, but notice the change in myself. Notice I’m not the same person I was then.

When I was traveling in South East Asia three years ago, it was after multiple eye surgeries, and I was so deliriously happy with my newfound freedom, I couldn’t stop moving around every two days. It was exciting, but I was also traveling as if I might have to go back to the hospital any moment, and it ultimately burned me out quickly.

Now, I’m moving slower, more intentionally. Feeling aware of when I still feel those symptoms of being scared time is running out, which might always be with me, but this time I try to just see it, name it, and let it go. I get to put everything I learned three years ago into practice, and now lead workshops and DJ dances at festivals in Thailand and Indonesia.

It’s all still evolving and I’m always learning, but it’s been nice to feel and notice this change while I’m here.

I was in Thailand for one month. I started off my trip by taking part in a dance facilitator program to learn about Dance Mandala, a form of dance that originated in Chiang Mai. It’s much slower than 5 rhythms and ecstatic dance, and is almost more of a movement meditation. I first found out about it when I was at Shambala, a festival in the mountains of Chang Dao, and met a woman at a drum circle who had just completed the program. I thought about the program on and off for the past few years, and remembered it again in the fall, when I saw they had an in person program starting in January.

I went into it trying to be as open as I could, but also always carrying my own hesitance when entering any wellness type of space. It’s really hard to hold these kinds of spaces, and to know that the person leading these programs is there for the right reasons. When I first started the program, I had a lot of resistance to it, to be honest. It was really slow, and deeply disorganized. When I asked the leader about the lack of structure, they just told me to be patient and all would reveal itself. But nothing started on time and we rarely got to everything we were meant to in a day. I kept trying to be patient, but also something in me wanted to run.

In fact, I even booked a taxi to leave early. My roommate at the program called me “the runaway.” But I also can acknowledge that I have this tendency to run, especially when I don’t feel safe. Maybe it’s part of my medical trauma, maybe it’s just my natural response at this point. But I always like to have an escape route. Still, I let myself stay. To tell myself I should just enjoy the slowness. Some days, there were small signs encouraging me it was the right choice.

One day, we learned about how the four tenants of Buddhism helped to inform the foundation of Dance Mandala: Metta (Loving-kindness), Karuna (Compassion), Mudita (Sympathetic Joy), and Upekkha (Equanimity). Reading further into it, one of the definitions for Karuna (compassion) was “the tender courage to meet suffering with presence.”

It felt eerily familiar. When I read that, I flipped back in my notebook to an entry from a week earlier, at a journaling workshop I led in the first week of January.

One of the prompts I offered asked for a word or phrase you wanted to embody in this new year. I had written down “gentle courage.” I remember not even being sure what I meant by it at the time I wrote it, but it just flowed out of me instantly. Deep down, I knew it was a courage to be softer, more vulnerable. Braver with my emotions.

And here it was, staring back at me in the workbook for this program. A small sign that it felt okay to stay here, to keep feeling it out.

Ultimately, I’m glad I stayed, and think I really did learn helpful tools about dance facilitation, although the program ended up being much more dramatic than I expected.

By the last few days, there was almost no organization in the program. We had stopped dancing completely, and everyone in the program really felt they weren’t getting what they had expected from the experience. The leader of the program was absent a lot, and many people were frustrated. (I don’t want to name them, or dissuade anyone from this program. I think other people enjoyed it. It just persoanlly wasn’t what I expected.)

One day, the leader sensed the frustration and asked me if something was wrong. I noticed everyone was already individually upset, but too afraid to share how they were feeling. So, I suggested a safe way we could all talk together. In the morning, everyone aired their grievances in a share circle, until every single person was crying. She admitted that we were right, it had been disorganized, but she didn’t give herself enough time to prepare or organize the program.

At this point, I was disappointed to hear this, as I had put in a lot of effort to be there, and it didn’t feel like this was matched at all by the leader of the program when she said she put no time into it. After our circle, the leader mentioned that there was clearly a “trickster” in our midst and we had to rid the dance studio of the tricker. I wondered if I, perhaps, could be the trickster. But maybe there was another trickster I wasn’t aware of. She had a girl run to the kitchen and get an orange and place it somewhere in the garden to lure the trickster away. Then we all had to dance backwards with our tongues out to banish the trickster for good…

After hours of this, I couldn’t handle much more. That day I happened to know about a music festival occurring only a hour ago with all local Thai musicians. To me, that sounded like a much better way to spend my time. So, it looked like the ceremony worked. I told them I’d be leaving for the day to go to the music festival, and another girl from the program went with me. After that point, I was not only named “the runaway” but also “the trouble maker.”

I wished the program hadn’t turned out this way, but all just felt very silly to me. Everyone spent more time at the program crying than dancing, and ultimately dance to me was about joy and feeling connected to my body, and I felt none of that at this program. Only deeply frustrated and stressed out, with a constant desire to escape. So, I went to the festival and I’m very glad I did. I danced in that one night more than I had in two weeks, made great friends, and met these incredible ecstatic dancers from South Korea who invited me to DJ there one day.

After dancing and practice my Korean, I returned to the program. We all danced one last time and I facilitated a Dance Mandala for some locals from Chiang Mai.

Some of the girls who stayed at the program revealed to me that they had snuck out to the garden and eaten the orange as an act of rebellion. They happened to eat it the day I came back from the festival, so maybe the ceremony worked after all.

Ultimately, no experience is ever a bad one. There’s always an opportunity to learn. It showed me that even when I find it frustrating, it can still be helpful to move slowly. That is can be helpful to stay with an experience, even when I feel the impulse to leave.

It also allowed me a lot of helpful space to think about dance in relation to my body, and to this idea of pain as a powerful portal for dance. How the pain we experience can be used as a tool for dance. I noticed that many other people in the program also struggled with their own medical issues, and I wondered if physical trauma could be another door to understand our bodies in relation to movement in an even deeper way.

Just like how when you are sick and need to be alert and aware when something has changed or is wrong, I think that can extend to connecting to our own body wisdom and inform how we move. I’ll be writing more about this in the future, but it’s was really inspiring to think about pain as a portal to freedom, rather than a locked door.

After the program, as I continued to travel through northern Thailand, I thought about my intentions for the rest of my trip. I wanted to let go of this fear that follows me in my body sometimes. I wanted to get better at naming this fear, and then letting it go. I wanted to let go of this insatiable desire for more. I wanted to feel satisfied. I wanted to feel still.

I wanted to feel what it feels like to be in one place and not want to see another. What would that be like, to simply exist? To not be afraid of not having enough time to live more lives?

One day, my friend told me about an elephant she saw at a rescue sanctuary she visited.

How the elephant used to dance in the circus, and was used to being chained and trained to dance at midday every day. How even now, five years later, even without its chains, it still danced at midday, the memory of its chains still in the elephants body, its back leg stuck to the ground, an imaginary chain always there.

I think dance is how I can free myself of these chains. By moving with my pain, and letting it move through my body, until, eventually, I can feel free and safe.

Thank you for reading, and for witnessing this journey.

Love,

Julia

I immediately felt like the karate kid. I did not know my own strength.

I went to the emergency room where they cleaned out the excess spoon from inside my hand…. and stitched me up. When I initially told the nurse I stabbed myself with a spoon, she did not believe me. She only understood after my mom brought out the weapon from her purse. She suggested to avoid confusing people, I just should say it was a knife.

But here we are. Closing out the year with the spoon wound of 2025.

Still, 2025 was still memorable in other ways. On new year’s eve, a group of us danced at a house party as midnight quickly approached. With only a few minutes to go, one friend yelled over the music, asking us the biggest lesson we each learned in 2025.

Immediately, I knew what it was. It showed me I could adapt to anything.

January 2025 started off with me facing my worst fears - going back into eye surgery after two years of being in remission.

I never felt as much fear and dread as I did in those weeks leading up to surgery, but I got through it. And a huge part of this was having friends and family there to help me. To remind me I wasn’t going through it alone. That I could not only face it, but come out on the other side, even stronger than before.

Since that time, I’ve been able to keep adapting, to keep remembering that I can get through any hard moment, and to feel grateful for such an incredible support system.

This feeling of resilience has helped me through other hard moments of this past year as well. Another eye surgery, after that first one was unsuccessful. Losing partial vision in my left eye. It only took until November for my eyes to really feel stable again, and now that they are, I feel ready to look towards this new year with more optimism and openness.

Plus, there were some pretty wonderful moments from 2025, too. I danced and painted a lot. I got my own apartment for the first time in 5 years. I got to dj at a festival in italy. I finally got an air fryer and it was pretty cool.

After being unsettled for so long because of my health, and then from traveling and being nomadic, once I got my place in August, I decided I would stay there, even though it was always my inclination to escape. To start over. And while it felt uncomfortable at times, I’m glad I stayed. Turns out, not living out of a suitcase and having a place to hang up art is pretty great. I love building a home that reflects my taste and all my chicken decor. I love that I’m in one place long enough that I’m able to be there for the people in my life. I love this community that makes me feel so seen and understood.

I’m not saying I’m done with traveling — in fact, I’m going to Thailand next Monday for a dance facilitation training. But for the first time, I’ll be coming back to a home, instead of wondering where I’ll return to.

As we head into this new year, I keep thinking about my intentions. And I know I want to practice embracing the present more, rather than always trying to be everywhere at once. I want to let go of resistance and instead, surrender to what is. I want to slow down more, and keep learning what it means to ground myself in one place. And I also definitely want to stay away from wooden spoons for a while.

If you’re also still feel reflective a few days into the new year and live in New York, I’ll be hosting an “Intentions for the New Year: Art & Journaling Workshop” at Recess Grove in Williamsburg tomorrow evening! It just sold out, but a few more spots will be released tonight and tomorrow. You can find out more info here.

I hope to see you tomorrow if you can make it, and thank you, as always, for reading!

Love,

Julia

This will be a chance to channel your intentions for the new year, and transform them into art. After being given a set of guided journaling prompts, you’ll use what you’ve written to inspire a new acrylic or watercolor painting.

Come meet other like minded artists looking for a way to ground, connect and share work.

All supplies and journals provided by recess grove.

You can find more information about the event and purchase tickets here!

I’ve been leading writing and painting workshops for the past few years now, and I love seeing how they continue to evolve with each one. Here are some photos from past workshops below!

Hope to see you there!

She explained how she wanted to use photography to witness and expand how we perceive women, and this would focus on how women portray anger, as they’re not often shown in this way.

While I didn’t necessarily consider myself an angry person, I told her I would do it. I love stepping into experiences that feel out of my comfort zone. I know that no matter how difficult it feels at first, it always feels worthwhile in the end.

One sunday morning, I walked into her studio in Chinatown. There was another women leading me through different somatic exercises to help me release and feel this anger, and then we shot for about an hour.

When she asked me to think of the last time I felt angry, I struggled at first. Sure, I remembered the last time I feel alone, or hurt, or uncomfortable, but anger didn’t feel as natural of a response. But then I thought about how, especially for women, maybe anger didn’t feel as easy to access because it’s an emotion we’re taught to repress or hide.

After the studio session, I walked through chinatown to the east village, taking the long way home and enjoying the last hour of winter sun before it set. I kept thinking about what made me feel angry. or what I felt like I needed to hide. And very soon, I thought about my eyes. How ever since losing the central vision in my left eye this April, I’ve been struggling to accept it.

I can still see enough to function and thankfully my right eye is strong for now, but this hurt, this anger over this loss, apparently still lingered.

I do my best to hide it, or show that I’m okay and can still adapt to daily life. But sometimes, in moments like these where it’s okay not to hide, I feel the true weight of losing my vision and what it means. How it makes me even more scared for something to happen to my right eye. A reminder that at any moment, my vision could change.

It’s a lonely feeling, knowing that many can’t relate to this particular loss. Because it’s not a “correctable with glasses” loss. It’s a dark cloud floating in front of me, blocking me all the time.

Sometimes, I feel distracted enough that I can almost ignore it. But other times, it feels so disorienting that I need to close my eyes, or I desperately try to clean my glasses, thinking if I clean them hard enough, this glare I always see will go away.

And while I feel anger at this situation, there is no one to be angry at. I could be angry at my eye condition, my doctors, or how the surgeries went. All the little moments that led up to losing my vision that maybe could have been prevented. Sometimes I sift through all the decisions that were made, wondering if I made a misstep. But in the end, it is a situation out of my control, and there is nowhere to direct this anger. There is nothing to be done, so why focus on it?

But sometimes, this anger comes out, because it still needs somewhere to go.

That’s the thing with anger. Everyone is inherently afraid of it, but when it’s channeled in the right way, it’s essential. Otherwise it simply keeps building up. I was grateful that day to access this anger, and surprised myself, in realizing how powerful and terrifying it felt. Maybe I avoided it because I knew that once I faced it, I’d also have to face that there were no answers. No way to change my situation.

Still, it felt important to acknowledge this significant change in my life, rather than just brush it aside as if nothing has happened. Yes, it was a hard loss I was going through that no one else could tell from looking at me, or necessarily relate to. But it still deserved my attention, so I could accept it, and eventually in time, let it go.

A few days ago, I went on a first date with a blind man. He was a musician from Sicily, and had been living in new york for several years. We initially started talking on hinge, and decided to meet up in Williamsburg.

At first, I’ll admit I was nervous to go out with him, because of my own trauma around my eyes. I met up with him at the Bedford stop, and wasn’t sure how much vision he still had, but it turned out he was completely blind. He asked if he could take my right arm as we walked through Williamsburg and instantly, all my fear around my own issues washed away. I felt hyper aware of all the sounds and movement around us, and felt on edge about someone walking into him or him missing a step. He could tell this and laughed, telling me not to worry, but I couldn’t help it.

Within minutes of spending time together, I was so glad we had met up. Whether I sometimes wanted to be part of it or not, I was part of this vision community, and embracing it by knowing more people with these experiences only made me feel more expansive in my experience, and my understanding of others. It felt like a reminder to keep embracing and accepting this space, rather than hiding from it.

We stopped by a holiday market, and I tried to describe what they had at the different booths. Eventually, we made our way to a restaurant. I read out the menu, and described the halloumi on his plate, which he had never tried before. I realized I spent so much time worrying about my own vision, it was a strange sensation to be so aware of someone else’s.

While of course we had our differences, we also had a lot of similarities. We had both been to Johns Hopkins for specialized eye care. He also agreed he always felt compelled to educate others around how to talk about blindness and vision loss, and it could be exhausting sometimes.

“I can’t stand it when someone says they’re ‘so blind’ without their glasses,” he told me, shaking his head.

“Me too!” I exclaimed. “I get really angry about it.”

He told me how he had lost his vision at 12 years old, and now in his thirties, he had come to accept it. But in the beginning, of course it was difficult.

“Before, I was very angry, but now I’ve come to a place of acceptance. Blind or not, you need to approach each day with a good attitude, and that’s all that matters.”

I asked if New York felt okay to navigate, but he explained that it was one of most accessible cities to be in. Even with the chaos of the subway and all.
”In my hometown in Italy, for example, there is no public transportation, so I need to ask everyone for rides. It makes me feel much more aware of my disability.”

Eventually, we parted ways, and decided we would go see some music together in the new year. Our time together brought up a lot of emotions. I felt both grateful for my own vision, and glad I was able to talk about my own vision loss with someone. While our experiences were different, there was enough that connected us that made me feel so much less alone.

After he left, I thought about the importance of releasing anger, and coming to a place of acceptance. He had pointed out that while we had experienced hardship, it was still necessary to go through these experiences to become the people we are today.

And I do believe that if none of this ever happened, I would be a much more closed off person. I definitely wouldn’t be writing this newsletter.

My health issues opened me up in ways i never could have imagined, and still continue to challenge me in ways I don’t always want, but need.

Sometimes I do feel this was the path I was meant to walk. To face these vision issues, and in the process, try my best to become a better human. To help others who also feel this loneliness around health and loss to feel a little less alone.

Thank you for reading, as always.

Love,

Julia

And then, the other week, something changed.

I was asked- what if you simply let go of this resistance, and surrendered to this experience?

I thought of all these moments where I initially had a lot of resistance towards being there.

I’d even ask you to try and think of a moment where you had a lot of resistance at first, and then felt differently by the end of this experience. What changed for you?

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I keep buying new decor for my apartment, and then seeing it in the space, and returning it. I wonder if this is what adulthood is. Just buying and returning.

I went in to see my eye surgeon a few weeks ago. Thankfully, it was good news. Slowly, my eyes are looking more stable. “I just wanted to let you know. You’re one tough cookie,” he told me. “I did a much easier surgery on two guys yesterday, and they cried so much I almost had to stop.” Of course I was in pain, I wanted to tell him. But when someone is operating on the back of your eye, you learn how to sit still and move through the pain, so nothing else goes wrong. You learn to steel yourself to get through it, and build up a strong armor to protect yourself for when it keeps happening, again and again. I wish I didn’t have to be so strong, I want to tell him, but I’m worried I won’t survive if I’m not. Instead, I thank him for doing a great job. “I couldn’t have done it without you,” I say, smiling.

I’ve lived in new york my entire life, and have never been to the empire state building. A friend had a free ticket, and I think of all the iconic rom com scenes that have taken place up there, so we go up to the top for an hour. Seeing the view from up high, I thought it would be breathtaking, and it was. But soon the endlessness of all the buildings gives me a feeling of slow panic and I can’t wait to get down.

I keep trying to be happy in new york, to feel glad that I am settled, but something feels off. Like I just don’t belong here. I keep telling myself I am very lucky. I have no right to feel this bad. I can’t tell if it’s simply hard to exist in a place I’ve lived in all my life, when I always crave new places. Or if it’s because I got so used to the adrenaline of chasing what felt new and exciting, that staying in one places makes me feel stuck. Maybe I just don’t fit in here anymore. I can’t tell if it’s a feeling to work through, or a sign to make a change. And then, sometimes, I’ll have a nice coffee while sitting in the sun, or share a silly dance with friends, and think, okay, this isn’t so bad, I can do this.

On a walk, my friend tells me how he always thinks of the scene in the cartoon, “The Fairly Oddparents,” where they go to Escalator Land. As they’re riding up the escalator, Timmy turns to his parents and asks when they get to the ride. “This is the ride!” his dad exclaims giddily. Maybe instead of constantly looking for the place I’m supposed to be, and feeling impatient to get there, this was the ride.

The other night, I sewed two foam noodles into red latex to pin onto a costume. I was working on making it into a giant heart. This wasn’t even for halloween. Just another festival that required an elaborate costume. I turned to my friend Daniel. “This is when I feel the most alive,” I told him. I know, he said, and he went back to making his concrete shoes.

Oreo stayed with me briefly, but is now in rehab (rehab is what I call ‘living on long island with my parents’). One day, I was walking him outside my apartment, when another small dog stood on his hind legs and put his paws around Oreo’s neck. Oreo mimicked him and did the same. It looked like they were hugging or choking each other. I couldn’t tell. But then he kept doing it to every dog he saw, until it became a problem. I decided brooklyn wasn’t good for him, and sent him to rehab. He hasn’t choked since.

I saw another one of my eye doctors, and he told me my eyes are still looking really good. “How about we see you in December?” he asks. I realize this means no eye doctor appointments for an entire month. The best my eyes have been since I was told I’d need surgery in January. This is the only way I can feel there is progress. Larger gaps between appointments. That’s the only way it feels real.

I’m so tired of being sick, and talking about being sick. But I’ve had cough and flu symptoms for almost three months now. My neurologist thinks it’s from the immunosuppressants I’m on for my MS, and because my immune system is so weak, I’m not able to heal properly. “Just don’t go near any sick people,” she tells me over video. “I personally wear a mask whenever I can.” I thought about all the spaces I’m in most of the time. Surrounded by people, or on crowded dance floors. “Okay,” I said “I’ll do my best.”

The worst part isn’t even the physical symptoms. It’s this feeling that it will never end, it’s that familiar sensation of doctors looking over my chart and listening to me, and telling me they just don’t know what to do with me.

The other week, I went upstate to DJ an ecstatic dance for the day. Amanda picked me up, and opened her trunk. I handed her a giant djembe drum and she laughed. “I love going on a simple road trip with you.”

I have an air fryer now. For two weeks, it was all I could talk about. I wonder if this is what adulthood is. Just getting new appliances and talking about them constantly.

I went to a Halloween party in Chelsea that was six floors and every floor was a different theme. All the guests dressed in stunning outfits and on the sixth floor, a woman danced in lingerie on stage while dripping hot wax onto herself. I looked on, impressed, but also, felt nothing. Is this what New York burnout felt like? Most of the night was spent going up and down the six floors, finding the “best” floor to dance on, rather than actually spending time dancing. At a certain point, I turned to my friend. “I get it now. This staircase is the ride!”

When my friend Chloe asked me over FaceTime what I planned to do for my birthday a few weeks ago, I froze up. I had no idea.

“You look like you’re in visible pain,” she said.

She wasn’t wrong. I was so unsure about what to do that my entire body tensed up. I knew it was silly. It really wasn’t that big of a deal.

But this was the first birthday I was spending at home with friends in a few years, and while organizing events can stress me out, also asking people to show up for me in this way sometimes made me anxious.

Which is another reason why I wanted to stay in new york this year. To gather with friends, and to feel grounded for the first time in a while.

A few weeks later, I had a small housewarming to celebrate my first apartment lease in 5 (!!!) years, and then a drum circle birthday picnic in the park later that weekend.

I felt so grateful to be surrounded by loving friends. To have such a playful, supportive community.

But I’m not just feeling reflective about my birthday. With the Jewish new year, it feels like a true reset in many ways.

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“Oh, you got the hanged man!” she explained.

“That sounds awful,” I said.

“No,” she assured me. “It’s more about a change in perspective.”

I learned that the card symbolizes patience, and a necessary pause. It represents a willingness to endure discomfort, suspend action, and see things differently to achieve transformation. A person willingly hanging upside-down suggests self-sacrifice, contemplation, and a surrender to a new truth or understanding.

The card was very tiny, so I put it away in my wallet, and forgot about it, until it fell out a few days ago.

In the moment, I couldn’t relate to this card. But now, it feels more resonant than ever.

Over the past few years, I’ve fallen into a bit of an unusual rhythm. I’ll stay in New York for as long as I need to, depending on what my eye doctors will say about my health, or what MS doctors will say, and once I’m stable and in the clear, I’ll leave and travel and enjoy my moments of freedom. It’s been quite literally a fight and then (book) a flight response pattern.

But constantly subletting and living out of a bag has worn me out, and I’ve gotten tired of running. So, this year I am really trying to do things differently, because I want more stability, even though the concept feels foreign to me.

So, I’ve been furnishing my new apartment, and staying in one place. Because although suddenly not being in motion feels uncomfortable, I’m trying to force myself to lean into that discomfort and see what comes from it.

A part of me feels strange to stay here when I’m healthy. Thankfully, my eyes have been doing better, and there are no issues with my MS, so this is usually my cue to leave.

But I want to see what can grow and change when I stay rooted, and see the world from a new perspective of stillness, rather than constant motion. I want to see how I can learn and grow, when I able to focus more on community building and work and relationships, without always being afraid of time running out.

Maybe going upside down is what I needed all along. But only time and patience will tell.

Love,

Julia

But one part of having chronic health issues is all the Tiny Illnesses that crop up, especially from being immunocompromised.

Now that my eyes are feeling more stable this month, I feel so grateful to have a break from constant eye appointments. These days, when I walk into the office, they don’t even ask me for my name to check me in anymore, because they all already knew who I am.

The good news has also brought surprising honesty from my doctors. Now that we can all exhale and agree that my eye look better, they confess to me how worried they’ve been all year. When they are training new fellows and have them observe during appointments, they explain, nodding over to me, “She’s one of my most complicated cases.” Maybe as a warning.

One of my surgeons tells me how he recently went to a conference of top glaucoma specialists, where he showed a video of him operating on my eye. The point was to get other opinions on what they would have done themselves in that situation.

“So, what would they have done?” I asked.

“They wouldn’t have taken the case at all,” he answers.

It’s frightening sometimes to hear how bad it is, especially afterwards. I always know surgeons try to stay calm and put on a good face for me, but it’s hard to know how dire it really is until once we’ve gotten to safety.

Only now, am I aware of how close I was to losing even more vision this year. Of how lucky I am that I am okay. It feels like an out of body experience, in some ways. To know that your sense of reality of the situation wasn’t completely accurate. It was, in fact, much worse.

And while I am deeply grateful to have my vision and to be stable, I still feel so much frustration when I have to struggle with my Tiny Illnesses as well. This started since I began getting treated for my MS in December 2023.

I don’t talk as much about my MS in this newsletter, but thought I could start. I’ve never experienced any physical symptoms from my MS, because they were able to catch it early enough. But doctors encouraged me to start treatment once they found lesions in my brain and spinal cord from an MRI two years ago.

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I got excited as I heard myself reading smaller and smaller letters on the eye chart. The nurse encouraged me as I continued, seeing what an improvement this was compared to my visit just two weeks ago.

When I saw my doctor afterwards, he remarked on how amazing it was to see such a change. When I lost a lot of central vision in my left eye in April, I was devastated. I had spent the past few months mourning my vision, trying to readjust to this new way of seeing. Every doctor I saw told me it would be a miracle if I ever regained my sight back to how it had been before.

And now, just a few months later, here I was. It wasn’t perfect by any means, or back to where I was initially, but it was a noticeable improvement. And that was huge. It was a miracle.

Every moment like this is always a reminder of how tentative and unpredictable health can be, but especially with my eyes. One day my vision could be lost, and then it could come back to some degree. It’s why it never feels like I am standing on solid ground. It can all change in a moment.

But the only thing I can do is appreciate when there are improvements, and remind myself that the harder moments won’t last forever.

After the appointment, when I asked him when I should schedule my next appointment, he told me he could see me in two months.

“Two months?!” I asked in disblief. This year has been so difficult, that I was used to seeing doctors every week or two weeks.

“That’s right,” he said, grinning. “This is what it’s like to be stable.”

An hour later, I was in Williamsburg, picking up the keys to my new, empty apartment. After living nomadically and subletting constantly for the past few years, I had now signed a year lease.

But these two big changes weren’t a coincidence. All year, I’ve been wanting to find more stability in my life, which sometimes feels almost impossible when my health issues have a tendency to leave me feeling out of control.

Still, I had done it. Because finding a good apartment in New York, much like regaining my vision, was also a miracle.

The next day, I started unpacking and putting away the linens and towels I had gotten for the place. I tore off the tags of the new towels, and something in me wanted to pause, as if I wasn’t really allowed to settle in here.

No, I signed a lease, I reminded myself as I threw the tag in the garbage. I could rest here for a while.

After living out of a bag for the past few years, I felt uneasy to really spread out and settle into a place at first. When I was subletting, I once joked to a friend that I could pack up all my things into a bag and be out of there in an hour. I saw it as a point of pride that I didn’t need so many belongings. And more importantly, had the freedom to leave and go wherever I wanted.

“What are you, Jason Bourne?” they asked. “Why do you need to leave so quickly?”

It feels funny to me that the same day my doctor told me my eyes were stable, I found stability in a home, too. But the two have always been linked, in a way.

I was scared to put roots anywhere, because I know that in a moment, my health can upend my life. So, why not live that way too? But now that I feel safe in my body, I feel like I can be safe in my home.

I am so grateful to feel more stable with my eyes, and to have a new home that I can decorate and fill with lots of brand new towels.

Thank you, as always, for reading.

Love,

Julia

Later that day, we walked into his studio. It was covered with paintings inspired by Monopoli, from realistic depictions of the town’s port to more abstract clouds on a stormy day. Some of his work incorporated different materials like fishing nets, or even denim jeans. If you tilted a canvas a certain way in the light, it would have a completely different look and color to it.

He spoke no English, but I wanted so badly to express how much I loved his work. My friend Taylor, who speaks Italian, translated for us.

“He says he can see you are an artist. That you appreciate his art. He can see it in your eyes.”

I smiled. I thought about how much we can convey through a look, through our eyes, when speaking or language fails us.

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