Hello, hello there!
It looks like this will be our last newsletter of the year, and I wanted to take this moment to catch you up on some recent updates, but also reflect on this year as a whole.
In my last post, I shared about the ecstatic dance event I facilitated. It was so much fun, and reminded me of why I want to be more involved with ecstatic dance in the first place. I love the way it brings people together, and I deeply enjoy holding a space for others to feel free and be themselves. I’m definitely hoping to organize more in the new year!
In other exciting news, I was able to finally get my Rituxan infusion. I was supposed to leave for a trip on Dec 9th, and two days before as I was packing up, I got the call from the hospital that the infusion was approved. At first, I was torn as to what to do, because I wanted to go forward with my trip. And missing out on more enjoyable aspects of life for my health issues just hits a nerve - I have a real fear of making any plans after my multiple eye surgeries caused me to cancel everything. I still do. Nothing ever feels like it’s definite until it’s actually happening. But also, this was a different situation. The doctors kept saying I could maybe have an attack in the next few months, but also the next few years. So it was an emergency, but also it wasn’t.
However, I knew that getting the treatment was the right move. For one, my health comes first, and I didn’t want to be away and constantly be worrying about getting a physical attack and missing this important window when I could prevent further damage. But also, getting this infusion approved was a fucking nightmare. It still would not be approved if my mom hadn’t called constantly to make sure all the proper paperwork was being done. Medical bureaucracy is horrible and will make anyone go insane, but I am very grateful to have such an amazing mom who is thankfully very skilled on the phone and does not give up.
So, the following week on December 14th, I got my first Rituxan infusion. I had never gotten an infusion before, but you essentially sit in a chair for 7 hours while you are hooked up to an IV with the medication and just wait. I was honestly so stressed about it not happening that I didn’t really have time to be nervous or upset, or feel anything really. The day before, my insurance tried to tell me it wouldn’t be approved. Then, the MORNING of the infusion, the infusion facility told us the medication was not delivered, so my mom drove down the street to track down the Fedex truck. The driver gave her the medication, explaining the building wouldn’t let him up so he was just going to leave. So you understand why up until I was in the chair with the IV in me, I was not letting myself feel anything because I wasn’t even sure it was happening.
But the day before, between the insurance calling and the Fedex truck disaster, I just felt so deeply sad and then mixed about feeling sad. It’s a weird thing to fight so hard for a medication you don’t even want. I don’t want to be doing this to my body. I don’t want to keep planning my life around health issues. And while my mind quickly goes to the part where I remind myself it’s a good thing to get this treatment and it is ultimately going to help me, I also sometimes need to take the time to just also say this fucking sucks and I really wish it wasn’t happening. Both can be true.
But the first infusion did finally happen! I didn’t really think it would be bad because my eye surgeries were so horrible that I thought this would be like putting on a band aid. But it did hurt, at least for the first 20 minutes. Then I passed out because they put Benadryl in my IV and let me tell you, that shit really works.
After the first part was over, it was smooth sailing - I just sat in the chair and let the IV do its thing. While I was there, I had visitors to keep me company. My brother and mom were there, along with some friends, and of course, Oreo.
They said he was the best behaved pet they’ve ever had (and the only one). I also sported our matching hoodies that my support group got me for my eye surgeries - it is still my most prized possession to date. We ate some food, played music trivia (Jason knew every answer) and before I knew it, it was done!
When I got home, I was pretty wired from the steroids they gave me, and had a lingering headache, but by morning I was okay.
I have my second one today at 12pm, so wish me luck! After this, the next time I need to do one is in six moths, so at least I have a little time until then.
My last big piece of news is, speaking of sweaters for Oreo, I was recently sent this kangaroo pouch sweater.
It was advertised to me everywhere online (I’m obviously their target audience), but was pretty expensive, so I emailed them asking them to send me one for free if I promoted it online. They did! And so, I made this deranged video with my friend Anthony.
Another fun update is I’ve been doing some modeling for art classes this month. It started because a friend of mine showed me photos from her modeling session, and they looked so beautiful, I wanted to give it a go. Plus, I always love trying anything new or uncomfortable. I enjoy throwing myself into the deep end and seeing what happens.
So, I went to my first class at the National Arts Club by Gramercy Park. It was a gorgeous building and one of the nicest places I have ever been naked. I sat there for 2 hours, while about 12 strangers drew me, including my friend Sofia - her art is featured below!
When I was done, they all couldn’t believe it was my first time! I was so still! I was flattered, but explained this is what happens when you learn to sit at a laptop for 10 years. One of the artists asked me to model for his other art class the following week, and I accepted. Another gig!
At the second modeling session, they marveled again at how still I could stay. I didn’t move at all! And as I sat there, I realized, a lot of my medical life has been staying as still as possible. Lying still for hours of MRIS, because if I move they’ll have to start the imaging all over again. Lying still for eye surgeries so they can operate as smoothly as possible. Now, siting still for this infusion. Always, sure, with higher stakes. But hey, if I moved, their art would be ruined and they’d have to start over, too.
I was good at staying still. It made me think of the value of stillness. I write a lot about how much I appreciate dance and movement, but we need stillness for reflection, to feel these moments of sadness and anger instead of just passing them by. Maybe I needed to embrace stillness even more sometimes, to have it balanced with all the movement in my life.
2023 has been deeply transformative. I was able to travel, to grow, to learn more about myself and what I want. But transformation is scary - it’s a shedding of a former self. And for 2024, I’m trying to be gentle with myself, but not fear or doubt this change, but find strength in this transformation. Sometimes, throughout the year, I felt the desire to chart a graph of my happiness for the year. So, finally, I did it. Organized by Deliriously Happy, Baseline Happy, and Not so Happy.
The funny thing is, when you see it all mapped out on the page, it’s just a wave. And there are a lot of ripples in there that aren’t accounted for. That’s all life is, and it’s hard to remember that unless you take a step back.
I’ve been thinking a lot about the quote by Simone Weil, the french philosopher, that goes, “Attention is the rarest and purest form of generosity.” I think about the strangers in those art classes giving me their full attention. And I think about you, my generous readers. Thank you for giving me this platform to share this journey, for allowing me to feel like I can be truthful. Thank you for all your support. I love you, and hope you have a happy and healthy new year!
Yours,
Julia & Oreo