Making Plans
Last week, a friend reached out to catch up on the phone. I was surprised to hear from him- we hadn’t spoken in years. But we got on a call, and when he asked what I had been up to, I realized he knew nothing about my eye condition. This is because, since I was diagnosed nine years ago, I very intentionally kept it a secret from everyone. It is only in these past two years that I have been able to talk about it with people, and now there’s even a newsletter! Growth, baby!
The friend asked about my uveitis, and I gave him the quick, fun, summarized version of the hell that has been the past few years. When I was done, he told me he was glad all the surgeries were behind me, and he hoped they had found a better long term solution. But I got choked up as I had to tell him that no, they didn’t, I had about another two good years left and then I didn’t know what would happen. Probably another round of surgeries, because there was no cure. Just buying more time. But I told him it was okay- I would enjoy the moment and be grateful when things were good, instead of thinking about the future.
After we hung up, there was something about my response that made me realize I had hit on one my greatest fears: the future. It reminded me that while I’m happy to be doing better, I’m very aware of how quickly it can all go away. My health fluctuates very easily, and I’m worried that as soon as I start letting myself get excited about the future and sign a lease for an apartment or work on a project with more responsibilities, or get into a serious relationship, it’ll get taken away from me if my health gets worse. It makes me hesitant to plan things sometimes, because it feels like I can’t be sure what will happen beyond the immediate present.
A big part of the reason I’m afraid to make plans is because in the past, due to my health issues, they often fall apart. This year, starting in June when my surgeries began, I had to cancel every plan I had made for myself and just submit to living day to day. I was afraid to look forward to anything because I knew there was a big chance I wouldn’t make it, so I stopped hoping. And when you live like that for long enough, it’s hard to just switch it off! But the one plan left that I had for this year was my friend Shannen’s wedding, and I wanted more than anything to make it. She had supported me and been there for me through all of my surgeries, listened to me after every hard doctor’s appointment, and I wanted to be there for her, to celebrate her.
The other reason going to this wedding meant so much to me was because I had met Shannen, and my other friends going, all through a support group for chronic illness that I joined about a year and a half ago. It was called “Chronically Chill,” and started by my friend Hope. They were the first people I could speak to about how I was feeling. They all had different chronic illnesses, but knew what went into the appointments and surgeries, or understood what it meant to have less energy than the people around you sometimes. More than anything, they knew how isolating it could be to have a chronic illness others couldn’t always understand, and they made me want to open up to more people.
They were all so funny and kind and empathetic, and made me realize I should probably let more people in my life know what was going on because maybe they would want to talk about it, too. So, friends, thank you for reading and caring and supporting me in a way I never knew possible. I thought I could bear it all on my own and that would make me stronger somehow, but being able to share with you has been a privilege, and only made me feel closer to you all. 💛
Well, this past weekend, I did make it. I went to Michigan and saw friends I hadn’t seen in a while, and got to celebrate Shannen and this beautiful new chapter in her life. I had done it. I got emotional just getting onto that plane- I kept telling myself “I did it. I’m really going.” The whole weekend, I couldn’t stop smiling, deeply grateful just to be standing there.
So, while I may not feel comfortable always thinking about the future, my disease has given me something else - a deeper appreciation for smaller moments, for the ability to simply show up and take in every second. None of us know what the future holds, health issues or not. You can try to plan and know what you want, and something can always get in the way that is outside of your control. Maybe it’s okay to still get excited and make plans, but if and when things change, be ready to adapt. There’s more risk involved, but I just know that’s probably better than living in fear.
For my medical update~ my pressure is still stable, which is a great sign because it means the valves they put in are working. But yesterday I met with two new uveitis specialists, or as I like to call it, doctor shopping! My main specialist has been at Johns Hopkins in Maryland for the past two years, and I cannot travel that far anymore for doctor’s appointments, so I wanted to find someone I liked in New York. On date #1, the first doctor said I looked good 😉 but my eyes have been looking really red lately and I wanted to know why. They mainly look bloodshot or like I’m very tired, which has given strangers even more reason to say to me, unprompted, “Wow, you look tired!” It’s a fun time.
He explained it was because the stitches they put in for my surgery a year ago were done incorrectly, and now they were poking out, and causing the redness. The only solution would be to go back into surgery and re-do the stitches completely. When I hear the words “go back into surgery,” I just sort of disassociate and stare into space at this point. But he said we could wait a month to see if it improves at all.
Then, something happened that has never occurred in my nine years of seeing uveitis doctors— he gave me his personal cell phone number. To give you a sense of how big of a deal this is, I drove 8 hours every month for two years to see my doctor in Maryland, and even when I was in the ER, I never got a single phone call from him the entire time. And this guy was just meeting me and told to text him anytime because I “looked like the kind of patient who would really need it.” Maybe my history of surgeries this year made him want to help me more, but whatever the reason behind it was, my first thought was, “Damn, this guy is nice,” and my second was, “He is really gonna regret this.”
Anyway, in non-medical news, here is Oreo with a lil Halloween themed toy - his costume sadly doesn’t arrive until tonight but whoever is able to guess the costume gets a special poem written by him.
Also, here is a New Yorker piece I wrote that came out this week called, “Some Other Unlikely Friendships,” with beautiful illustrations from Ellis Rosen, of ToonStack fame!
Thank you, as always, for reading!
Love,
Julia