Tiny Joys, Pt. 7: Familiar Rhythms

On returning back home after time away, getting my next infusion, and learning to ask for help.

After a month and a half away, I’m back in New York! While it was nice to be back to familiar surroundings, it also took some adjusting as well. Although I was happy to be home and see friends, I was resentful that the real reason I had to return was for my infusion for my MS. It’s a funny thing sometimes, to be both grateful for getting the treatment you need, but also exhausted by the way it rules your life. At this point, I have gotten better at accepting that I can feel both.

There were also other nice parts of being back, like the random stranger on the street that yelled out, “Nice tan!” at me. Maybe catcalling… can be good sometimes?!

But ultimately, I was feeling okay. Actually, more than okay. I don’t think I’ve felt this aligned and settled in a long time. For most of my life, I’ve always felt very indecisive or nervous about making the “wrong choice.” But something changed for me last month, where I finally just realized, there is no such thing as a bad choice. Not really.

Whatever I do, I can make it work for me, and approach it with a good mindset. And now, nothing seems so bad. I feel a lot more calm, and comfortable to follow my intuition more. Like I can trust myself in a new way. So that when I make a decision and am unsure of how it will play out, I feel better about just falling into the unknown willingly and seeing what will come of it.

Now, without further ado, here is my roundup for this month’s Tiny Joys:

Morning walks with Oreo: To prepare for my infusion, my parents flew back to New York from California to be with me, and they also brought Oreo along to provide some emotional support. Now that we’re back together, being forced to go for walks with him in the mornings has been such a calming part of my day.

I really love walking without listening to any music, and just trying to be as present as possible. While Oreo has been here, he’s even had his very first DJing gig. I was so proud.

Infusion Day: Funny enough, while this was the day I was looking forward to the least, it was one of the more meaningful, heart warming days I’ve had in a while. While I was away, there was a moment when I admitted to myself how scared I was for this infusion. And it wasn’t that I didn’t think I could do it alone. I just didn’t want to.

For most of my adult life, I barely shared anything about my medication situation with my uveitis because I didn’t want to “burden” anyone. But this time around with autoimmune disease number 2, I was determined to do things differently. So, even though it made me feel deeply uncomfortable, I asked a few friends if they would come sit with me for my infusion. And to my surprise, they all showed up. Some friends even asked if they could come without me saying anything.

Last Tuesday, the infusion room was crowded with friends and family, and honestly, I was overwhelmed with gratitude. It just reminded me how lucky I am to have such an incredible support system, but also it showed me what can happen when you reach out for the help you want, even if it feels scary. It showed me how far I had come. That I was surrounding myself with such good people, and felt less afraid to ask friends to show up for me. I have one more infusion coming up on July 9th, but feel a lot better about it now.

Connecting with old friends: As a result of this infusion, I had someone reach out to me that I hadn’t spoken to in maybe fifteen years. We had gone to summer camp together, and over time lost touch. But now I learned she was going through health struggles of her own, and had been reading this newsletter. It made me so grateful to reconnect with her, and I loved that through our shared experience with illness, we could come together in this way. Moments like these make me feel like writing openly about illness and being as vulnerable as possible is worth it, because it leads to encounters like these.

This Random Van Full of Coconuts: I love a fresh coconut, but I have never seen anything like this in my life. You really can have it all here!

Shabbat: For most of this year, I would observe Shabbat on Fridays with a group of friends. It served as a really amazing new source of community, and a way to reconnect to my Judaism. When I was away, I didn’t go to a single Shabbat. And with the rise of anti-semitism, the few Jews I met admitted they were afraid to say they were Jewish. So now, coming back to New York and falling back into this familiar rhythm of Shabbat, I felt more grateful for it than ever.

To be able to be in a space that not only felt safe, but where others felt proud to be Jewish. It’s something I won’t ever take for granted.

Accidentally Matching Gelato with My Outfit:

Please applaud.

Art modeling: Sometimes I will sit as a nude art model. There are a lot of similarities with sitting for infusions and art classes— mainly that you have to sit still for hours, and you are blatantly reminded of the fragility of your corporeal body. I’ve modeled a handful of times, and whenever I do, it’s a new learning experience. I always think I will be past this anxious feeling of standing naked in front of strangers but there is still a sense of nervousness in the beginning. And I think that is what I love the most about it. Yes, I love the beautiful art that comes out of it, and all the different ways that the artists will draw me in their own styles.

Art by Sharilyn Neidhardt

But standing there makes me feel so deeply alive and present. There is no distraction available. Just me there in the middle of the room, existing. And sometimes just quietly existing, and appreciating that existence, is enough of a Tiny Joy.

Love,

Julia

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In the comments…

Please share me with your Tiny Joys lately. They can be anything from a book you started reading, to a good conversation with a friend, or a really great breakfast you had. I want to hear about it!