No More New Year's Resolutions
Nothing else we need to work on, thanks!
Hello all!
How far we’ve come! Thank you for staying with this newsletter since September. I can’t tell you how much it means to able to share these experiences with you.
Thankfully, I have been doing a lot better. And as the year winds down, it’s hard not to feel reflective. I went to my last eye doctor appointment of the year last week, and couldn’t help but tear up. I was relieved to be done, but also, I still get gripped with fear whenever I approach 14th street and 1st ave, and see the New York Eye and Ear Infirmary come into view. My body completely shuts down. No other location has quite this same effect on me, except for maybe the Baskin Robbins that gave me food poisoning once in high school.
I always take a photo of the hospital right before I go into surgery.
And here’s one from last Friday.
It never gets easier to go to doctors appointments, but at least now I can leave with good news for the first time, and that’s something.
This past month, I’ve felt more settled and calm, though it’s come with a new, strange feeling. Like I’m observing life outside of myself. I’ll be at a holiday party, or an exercise class, or taking Oreo for a walk in the morning, and I’ll be so amazed that I get to take part in these little motions of life that felt so distant for so long, that it’s like I’m watching them as an observer, rather than being the one experiencing it. A string of moments where I feel so in awe it’s happening that it’s almost not happening to me at all.
I feel present and content, but I don’t feel immersed in life sometimes. Instead, it’s like I’m floating around it, watching it unfold passively. I’ve never felt this way before. I was always so sure of what I wanted, of where I was going. And now it all seems amorphous and unclear to me.
When deciding what I want for my life, I only seem to be able to take things on month by month. Part of it, I believe, is that after this past year and a half, my values and desires have shifted. But another part of it is that I am still so painfully aware of how bad things were, how bad they can get again, that I feel compelled to make the most of my time. No more putting things on hold to do them one day. Being sick has shown me that you don’t always have that chance.
But the fucked up part of it is that there’s still a tiny voice going, “Okay, but do you deserve it? Just because you were sick for a long time, why do you deserve to be happy and do what you want?” I struggle to give myself permission. There’s a part of me that’s always found it more familiar to sacrifice, to be in pain. Maybe that’s just what happens when you live with a chronic illness. But it reminds me I’m resilient, and shows me I can get through anything. And now that I’m better, this feeling is unfamiliar. I don’t have anything in my way, except for a check-in visit every two months, and I tend to feel more paralyzed by choices, by freedom.
It’s funny, as I got back in touch with friends I hadn’t seen since before my surgeries, they would all end up asking, “So, are you finally done now? Are you okay?” Of course, the answer everyone would like to hear is, “Yes, it was a weird time in my life, and now it’s over!” But the real answer that makes everyone uncomfortable, is “No, and I might never be done.” There is so much uncertainty that comes with this disease. And while I am coming to terms with that, it’s inevitably affected how I live my life.
I am grateful that I am better, but I am still incapable of planning more than anything in the immediate present or short term. I am afraid of the pressure and disappointment that comes when it doesn’t work out.
As this will be our final newsletter of the year, I wanted to end it with some new year’s resolutions, but being someone who is naturally obsessed with self-improvement, I sometimes find this tradition to be more stressful than freeing. I tend to focus on work goals more than anything else, and it feels like a new pressure to do better, to achieve more, without leaving room to feel satisfied with what I’ve already done.
Within my own health journey, I already get so hard on myself for not being where I’d like to ideally be, and then I look back to just a few months ago. When I was going to doctors appointment multiple times a week and my body wasn’t functioning properly. When I look back on those moments and give myself some perspective, I don’t feel as much pressure for what I need to accomplish, but feel proud of how far I’ve come. So, for this year, I’d like to end this newsletter with a list of things I’m proud of this year.
My 2022 Accomplishments, Big and Small:
I went through 5 eye surgeries since last November, including a hemorrhage, and now my eyes are stable.
I don’t see floaters anymore, after seeing black spots in my vision for the past 8 years of my life.
I got off all my immunosuppressant medications, and am down to just two eye drops a day.
I wrote some New Yorker pieces I liked and collaborated with very talented friends.
I threw Oreo an excellent birthday party.
I chipped away at the hardness a little.
I made it to my friend Shannen’s wedding.
I hit it off with a groomsman at said wedding, then took a chance and flew to visit him in Houston a month later.
I got my own (good) health insurance.
I started grad school and finished my first semester (a Master of Science in Education!)
I started eating healthier and cooked a lot of nice little meals.
I got through withdrawal from painkillers.
I can see 20/20 with glasses!! and my prescription is down to a -2, instead of a -10.
I learned to lean on people, and ask for help.
I stayed sober for 19 months.
I was able to run again (and then stopped very quickly. It got cold!!)
My toenails grew back and I can dance and walk now without pain (They had to take off my toenails because my eye medication broke down my immune system, it was a whole thing).
My doctor told me I’d be able to swim again with goggles!! (I was told I may not ever be able to go into water again, and I fucking love to swim).
I got so many objects with Oreo’s face on them that it now looks like an extremely creepy shrine (We got a pillow, a blanket, a bandana, multiple drawings and paintings, and a vase).
I can see my doctors every two months now instead of multiple times a week.
My eyes appear less red from the stitches.
I started a newsletter about my eyes and was more vulnerable with friends and family than I’ve ever been in my life.
Sometimes looking back on old photos can be upsetting, to remember all the pain and time lost. But it’s also an opportunity to gain perspective, to recognize all the effort it’s taken every single day to get to where I am.
I’m hesitant to make resolutions because I’m afraid to plan, to hope things will be different. But this year I’m going to try my best anyway, because my new mantra is, “You never know when things will get worse, so make the most of life while you’re doing better.”
My small resolutions, if I’m making any, are more promises to myself: to take more chances, to be easier on myself, to take a step back and gain perspective more often. I’d also like to be comfortable being even more public about my uveitis. This newsletter was a big step for me, and helping others through this has filled me with such profound joy.
In other news, to start off 2023 right, because my doctor has told me that I look well enough to be away from him for up to two-three months, I am going to Bali next week with a friend to kick off the new year and enjoy my good health!
Thank you all so much for reading. I am excited to keep this going, and see where it takes us. Have a healthy new year, and see you in 2023!
Love,
Julia
Enjoy Bali darling!!!!