Tiny Joys, Pt. 2: Post-Traumatic Growth

Learning how to fly a plane!

Dec 04, 2023

Hello all,

I’m sorry for going so long without an update. If I’m being honest, the last few months have been a struggle, and I’ve only recently been starting to feel like I’ve got two feet on the ground. While writing this newsletter usually helps me process everything a bit better, I wasn’t sure how to formulate what I was feeling. I didn’t know if I really wanted to sit with it all more than I already was. It takes enough out of me day to day - did I want to spend more energy on it than I needed by writing about it?

But I think, more than anything, I still find it difficult to share these darker thoughts, these parts of myself that I often wish didn’t exist. I try to be as gentle as I can with myself, and am grateful for the ways I’ve grown, but I also would prefer not to face more health issues. I just wouldn’t mind a tiny break?!

While I always try to be honest in this newsletter, I never want it to get too dark and sad. I think that for a long time, I’ve believed this narrative that my emotions are too much for people, and if I’m really honest about how hard everything feels, it will scare people away. Except the thing is, what changed recently is I realized it’s not other people that are scared of my emotions — it’s me. If I really sit with everything that has happened, I’m afraid of feeling all of it. And I know this fear of sharing this pain is not totally unwarranted. I’ve had experiences where friends have told me my health issues were too much and it ended friendships. But to me now, moments like that make you realize who should be in your life, and who shouldn’t.

I feel so supported by friends and family, but I still need to work on how to sit with these harder moments, and embrace that feeling sad and overwhelmed is a human experience. Not something to be ashamed of. I’m a big believer in bringing in as much joy in your life as possible, but I think meeting these shadow parts of yourself that you’re afraid of are just as important. I’m still working on it all, but hey, I’m finally writing this newsletter, so it’s a start. Also, you’ve subscribed, and my sense of guilt for not posting in a while is pretty powerful. So, here it goes.

August

Coming back from my travels was a hard transition. Not just because I had to readjust to a meal costing $30, but because right after receiving good news about my eyes staying in remission, I was given an MS diagnosis and was told I needed treatment.

September

Starting around September, I felt like a plane slowly crashing. I kept waiting for it to pick up and right itself. I suppose it feels like my health issues have thrown my entire life onto such a different course, that I’m still trying to figure out where it leads now. It’s this perpetual feeling of free fall, nosediving with nowhere to land.

That’s maybe one of the biggest difficulties of this situation. It’s hard for me to trust that things will be okay or know how things will turn out, because based on prior experience, it’s never been easy. It took 10 years to get into a good place with my eyes. Hope is really scary for me, when my health is so unstable and subject to change.

To give more medical background on the current situation: I first got an MRI done in 2018 for my eyes, because they wanted to put me on a medication called Humira and needed to make sure it was okay for me to go on it. Only it turned out I had lesions (tissue damage) in my brain, and that medication was ruled out. After extensive testing, they diagnosed me with RIS (radiologically isolated syndrome) which means that although I have no physical symptoms of Multiple Sclerosis, my neurologist wanted me to get an MRI done every year to watch it and make sure it didn’t progress. RIS can either worsen with time, or just stay benign forever. So, every year since then, I’ve been getting MRIs. I largely put it out of my mind, mostly because I had my eyes to worry about.

July

Then this past July, when I was in Australia, I went to a dance and fainted, and had a mild seizure in this grassy field. One girl said maybe I had a kundalini awakening. I was staying in Byron Bay, which is a pretty small town, and they did not have any way to test me when I went to the hospital. Just an X ray machine. So this kundalini awakening diagnosis was the best evaluation I got. I’ve never experienced anything like this, and I think it was probably because I was tired and dehydrated, but when I regained consciousness, my first thought was: Fuck, what if it’s the MS? The second one was, Damn, I think my body is exhausted, maybe it’s time to go home.

A week later, I came back to New York, and got my usual MRIs. But this time, something had changed. They found lesions in my spinal cord as well as my brain. I Zoomed with my neurologist, who had been seeing me in LA for the past few years, and she told me that now it was time to get on medication. We couldn’t just keep watching it. This is because when the lesions move to the spinal cord, there is a higher chance for me to have a physical attack. Which apparently can look like me losing feeling in my hands, or legs or feet for 48 hours. And once this happens, I am more likely to become disabled in the future. But the silver lining in getting MRIs for the past few years is 1) I know how to lie super still and 2) no one usually catches MS before they have an attack, only after. So some doctors think if I go on medication now, there’s a chance of preventing an attack altogether. But also the attack could happen within a few months to a few years…. or maybe never at all. But no one wants to take the chance of not treating at all.

Although this is very different from my uveitis, especially because I don’t feel any physical symptoms currently, it’s a lot of the same verbiage. It’s all slowly worsening, like a dark cloud hanging over me. It’s the same anxiety I felt with my eyes - I was slowing losing my vision, but how fast it would deteriorate was unknown. I’m back to reckoning with impossible questions all over again.

So, September mainly consisted of doctor shopping again and deciding on a treatment plan. I met with several MS specialists in New York, and they all recommended I go on Rituxan, which is an infusion treatment. It’s done every six months, and depletes B cells. It can open you up to more viral infections, but generally seemed the most effective option. So, I decided to stay in New York for October and November so I could get my treatment and then be on my way.

Doctor’s appts need better lightning!! That is the top priority

October

I thought I was stronger after having time away. That I had processed everything that happened, and was able to move forward. But going back to doctors appointments and deciding on a treatment plan felt like opening old wounds back up again. And maybe it sounds silly to think that after 7 months away, I could heal 10 years of carrying an autoimmune condition and all its medical trauma. But I really thought I was better. And this news kind of broke me all over again.

I started seeing a new therapist recently, and she reminded me that it was okay to still be processing everything. At first, I didn’t believe her. I had finished recovering from my last surgery by last October! I didn’t think I had a right to claim that I was still hurting and sad. That the statute of limitations of feeling traumatized had run out somehow.

But everything I thought I had moved past have been resurfacing. I was back to seeing multiple doctors for opinions, and not really feeling taken care of by any of them. In one appointment, the doctor’s office door literally broke and I was trapped inside. The metaphor was too on the nose, in my opinion. I had to get a spinal tap. I was back to spending a lot of my time fighting to get medical treatments covered by insurance. Never feeling truly settled, because the future felt more and more unsure. Mentally preparing myself for being back on a medication for the rest of my life, when I thought after all these surgeries, I was finally free.

I tried really hard to stay positive, to remind myself that this is a good thing. That I’m getting the help I need, that I have family and friends that care and support me. But also, sometimes, it feels like it’s all a bit too much. Just passing certain streets in New York sometimes reminds me of when I was recovering and makes me cry. When I hear an eye doctor’s name that wronged me, or when I look up an email exchange with surgeons from last year, my whole body shuts down.

This trauma comes and goes in waves, and I try to ride it out the best I can. But sometimes I’m scared that it will never go away, that all this pain will live inside me always and harden me. I think vulnerability can be helpful in that it opens your heart, and maybe that’s what this is all meant to do. But being in touch with that part of me is so painful. And all I want to do sometimes is push it away and ignore it. It’s why I haven’t written in months. Because writing it all out makes me face it, and grapple with it head on.

I try my best to distract myself sometimes, to keep busy as much as possible so I don’t feel all of this. But lately, I’ve been reminded how important it is to sit with those feelings, that this is what makes us human. To allow my body time to rest. That slowing down and being present is the only way to really be in touch with your intuition. But being present is hard, when you desperately want to escape your reality.

November

These past few weeks, I’ve been giving myself permission to really accept that I’m still healing. That I’m doing the best I can, and that I should still be proud of how far I’ve come. Yes, I’m facing a new diagnosis. But every day I have to remember that my eyes are better, that I can wake up and not see floaters in my vision. That from taking the time this year to travel, my values have changed, my interests have changed. I’ve changed. As terrified as it is to think I’m back to where I was, I have to remember how much has drastically improved. And while these past months of doctors visits have dredged up a lot of the past, I’m trying to still focus on my future and know that everything will balance out in time.

Sometimes, this all feels like one big lesson in patience. I’m so desperate for this period in my life to be behind me, but then I think, hey, there are still a lot of really wonderful things happening in my life, too. And maybe this is my chance to learn to accept that I have no control over any of this. That everything will work out in time, as it should. I’m happy to be writing, because I want to remember this feeling, no matter how painful and uncomfortable it is, and I know it will get better. Because you can learn a lot from your discomfort, and being challenged is ultimately how you grow as a person.

December

Only now it’s December and I haven’t gotten my treatment. Rituxan is extremely expensive, and my insurance still hasn’t approved it. This past month consisted of a lot of frustrating calls with doctors and nurses and the insurance company, and nothing has changed. But I had planned to leave New York by December 9th, so I am caught in a tricky position. I want to be responsible and stay for the treatment. Every time my hand or foot falls asleep, I got into a panic and think, fuck, is it happening now? Is this an attack? And then I move it and it is okay. But it’s scary to think this could happen any moment. Also, I’ve been waiting for this since mid October, so I don’t want to put my life on hold when I don’t know if it will be pushed another month or more.

When I decided to stay in New York, I was pretty depressed about it. Mainly because since I spent the last few years stuck in New York for other medical treatment and surgeries for my eyes, I just saw it as a city that was trapping me. I still can’t go down certain parts of 14th street and refuse to pass the eye hospital ever again. But the thing is, something surprising happened in that I actually started to… really love being here.

I was able to reconnect with friends, and make new ones. I tried to apply everything I loved about traveling to my time in New York, and found myself being so pleasantly surprised by all the wonderful communities I discovered. I tried to go dance every night, or as much as I could (one week I fully couldn’t walk and needed to take a breather). I found myself really loving the feeling of being grounded in one place, in routine and stability and seeing the same friends again. In hanging my clothes up on a hanger rather than living out of a bag. The simple things!

Now I find myself leaving again soon, and feel sad to go when I find myself in such a good rhythm, but it also feels nice to know I want to return this time. The other week, a man was giving me a ride home in his camper van (don’t worry mom, I knew him for 15 full minutes before!), when he told me about how he makes art around this idea of post-traumatic growth. He recreates objects that were part of his trauma, and then performs with them in a space. How it’s a chance to find vulnerability and beauty, even after hard times.

As soon as he told me this term, I felt it deep inside me. Because it made my plane-crashing-feeling suddenly make so much sense. Over the past year, I’ve reevaluated my values, my profession, my living environment, my hobbies, my romantic interests. I have different intentions for how I want to live my life, and that can feel really fucking scary to just completely change course. Especially because I have been an organized planner since I was a child. I enjoy being spontaneous, but also I like having a plan and a to-do list. It’s organized chaos, I guess??

Maybe the plane wasn’t crashing after all, it was just a natural ebb and flow of life. While I can plan all I want, I know it can all change in an instant anyway. So, I am excited to go into this next part of my life embracing the unknown, and embracing the sad, emotional parts of myself just as much as I love the fun, joyous parts. And speaking of joy, here are some Tiny Joys I’ve been enjoying lately:

-Bringing Friends to Ecstatic Dance

Many people I met when I traveled already loved ecstatic dance, but it’s been so fun to introduce it to people at home for the first time! Speaking of, I will be DJing an ecstatic dance in New York this week! I will make a separate post with more info if you are in the area and interesting in coming.
Djing for the first time for my birthday :)

-Getting Bangs

I just recently joined the bang community and am loving it. I’ve been wanting them for a while but was scarred because the last time I got bangs was in college after a break up, and my roommate cut them and then also died my hair a crazy shade of red. My grandmother did not recognize me when I came home, and I wore a hat for a year. Then last month, I went to a salon and asked for bangs, and the hairdresser flat out said, “No, this will look awful with your thick hair, I don’t want to be responsible.” I almost lost my nerve, but then went to Paris to visit family and a hairdresser did it with no hesitation. Vive la france!

-Seeing My Family in France

My dad’s side of the family all lives in Paris, and between Covid and all my eye surgeries I wasn’t able to go for a long time. I was starting to think the universe just didn’t want me there - every time an opportunity came up to go, something went wrong. But in October my grandfather was in the hospital, and we went to go visit him. It was my first time back in four years, and was so good to see family, and grateful my grandfather ended up doing better!

-Running More

I always try to watch the NYC marathon, but this year really got me choked up. I love watching everyone run, and seeing runners do their best while strangers cheer them on. There is truly nothing like it. So, this year I decided, maybe this will be the year I run the marathon. I’ve just been running a few miles so far, but I started running again with my running group and also convinced my dad to run it with me, so baby steps!!