Eyewitness News

Your #1 source for all breaking news related to my eyes! If there's a second source, I'm.... concerned?

Welcome! 

Thank you for subscribing! I’m not sure how this will go, but we will embark on this journey together. I am hoping this newsletter can be helpful for when I am drained from being in hospitals and doctor’s appointments all day, but still wish I could keep you updated. Because while I deeply appreciate when someone checks in on me to see how I’m doing, it can get exhausting for me to repeat what is going on medically every time and relive it. It’s like when someone asks how your break-up went.

You’re happy they asked, but also you don’t necessarily want to retell the story over and over again about how they cheated on you and you walked in on them while they were doing some weird Twilight role-play. You just want your friend to know what happened so you can jump to the fun part where you bash the ex and they help you move on. So, that is how I hope this newsletter can be helpful! Not to replace checking in and talking, but to catch everyone up in a more efficient (and hopefully kind of fun??) way.

So, now for our medical update segment -

What you missed last week: I had surgery on the 18th to get a valve put into my eye for my glaucoma. The valve was supposed to control my eye pressure so that it doesn’t get too high. (I haven’t had glaucoma my whole life, it only started a few months ago because of the surgeries I got in November / December.) But then, the day after surgery, my eye hemorrhaged, and it moved the valve they put in during surgery.

After the hemorrhage, I was in the worst pain I have ever been in, I started getting these migraines and couldn’t leave bed, I couldn’t eat or drink, I stopped sleeping entirely, I was so weak I couldn’t walk without assistance. And I lost my vision multiple times in my left eye. As in, everything was mainly white, or I could catch glimpses of outlines of things. The reason this is so terrifying is that with my disease, there is always a chance that once I lose my vision like this, it won’t come back. I just need to sit tight and wait and hope for the best. For this one week, every other day I would lose my vision, and the next day, it would come back. It went on like this for six days.

And then, miraculously, on the 28th, I started feeling better. I could leave my room, or go for a short walk. My vision was stable and getting stronger. And while my migraines are still a problem, the pain is manageable, and I’m able to feel a bit like myself again. (Also, if you’re ever confused about a medical thing, don’t feel bad asking questions, I don’t mind explaining!)

This week’s update: I went to see one of my eye surgeons this morning. While they’re glad my pain is going down, they need to figure out what to do about the valve, because if it doesn’t function properly, my eye pressure will get too high and I can 1) get permanent optic nerve damage and 2) lose my vision. Right now, they think that there’s a 50% chance the valve could go back in place on its own over the next few weeks, or a 50% chance they need to go into surgery again to put the valve back into place.

When I asked them what they were basing this assessment on, they admitted it was based on….absolutely nothing! Because as it turns out, they have never seen this happen before. So, right now, while I am grateful to be in less pain, I am sadly not out of the woods yet, because I need to find out how to get this valve back into place.  

Now, in non-medical news, to celebrate feeling better and to honor the baby boy himself, tomorrow is Oreo’s 3rd birthday and I am throwing him a little soirée! He just got fitted for a tux, but here we are lounging in our matching sweats.

For this next part, I am honestly a little terrified to share. Clearly, from all your support and love, I know that a lot of you want to help and be there for me, and I am really touched and moved by that. I also know that this disease is hard to understand so maybe there are moments when you’re not sure what to say or do. Honestly, sometimes I don’t know myself. Which is why I tried my best to write out the ways I would like friends to help, and things I would like them to avoid.

I don’t want anyone to think I’m not grateful for the ways you’ve helped me in the past. I just thought it could act as more of a guide going forward. So, if you’ve done some things on the “stop” list, my intention is not at ALL to make you feel bad. I’m doing this only in the hopes that it will be helpful for our friendship and make communicating about this dumb disease a little easier. Anyway, here it goes—

What I would like you to please avoid:  

• Insensitive jokes that belittle what I’m going through because sometimes eyes aren’t taken as seriously, or you don’t understand what is going on and are uncomfortable. This includes: “jokes” about me getting zombie eyes, a third eye, new eyes, talking disparagingly about being blind, or about how horrible it is to be blind. Making fun of me for not being able to read certain things because of my limited vision. I can appreciate making fun of this shit show as much as anyone. I’m not saying never joke about this. Jokes about murdering my doctors? Go for it! Whimsical parody songs about ophthalmology? We love! But if my vision is the butt of the joke, and if you are punching down, or making fun of anyone with a disability, please think of a better joke. 

• When someone compares what I’ve been through to losing a contact, having an eyelash stuck in their eye, or getting Lasik.

• Vague phrases like, “I know it’s hard,” when you don’t know what’s been going on or haven’t checked in. Empty platitudes like, “They’ll figure it out” even as my situation is getting worse. It feels like you’re just saying words for the sake of them without understanding what’s happening. 

• In regards to surgery, phrases like “It’s just another one,” “They’re pretty common,” “You’re a pro at this now,” “It’s not so bad.”  Even though I have been through five eye surgeries this year alone, they do not get easier or less scary, or come with any less risk. Every surgery is pure torture. So when you make it sound like I’m just going to get my teeth cleaned and speak about it this casually, it feels frustrating. 

• Saying “I wish there was something I could do.” Instead try, “how can I help?” Sometimes, there really is something!

• Going on about how much my situation sucks. I try really hard to stay in a positive headspace, and it only makes me feel more depressed. 

• Saying “I don’t know what to say.” It makes me feel really alone, like my situation is so bleak and hard to relate to that you can’t even talk to me.  

• A ❤️ with no words of encouragement, or no questions asking how I’m doing. I know these are sent with good intentions, but I would always prefer a message, however short it is, over just an emoji.   

What I DO appreciate: 

• Specific questions asking how I’m feeling, how a doctor’s appointment went, checking in with texts or calls, and  learning enough about my eyes/ my condition to be able to ask questions about what is happening and be informed. 

• Letting me talk about what is going on medically if I need to vent, but then sometimes all I want is a good distraction because I am tired of doctor talk consuming my life, and if so, I will let you know!

• Asking, “How can I help?” Sometimes, even though there might be nothing, it is nice to be asked.

• Saying comforting things like, “I love you and I’m here for you. You are not alone.” 

• Asking if certain modes of communication are better since my condition / needs are always changing (sometimes I can’t text, other times I can’t talk on the phone or listen to voice memos because of these recent migraines) Because it fluctuates, you can just ask, “Is texting or calling better?” 

• Sending small gifts to cheer me up.  

• Showing up and visiting me.

Everyone has been so supportive, and I’m deeply grateful for that. The last thing I’d ever want is for anyone to feel badly about something they did because I know everyone has good intentions. I just wanted to offer some guidance on what would be helpful in the future, because I understand it’s hard to know what to do or say sometimes and I love you all a lot!

A friend recently sent me a quote: “There are times you feel you’re being buried… when really you’re being planted.” This has been the hardest year of my life, but thank you for the times you’ve lifted me up and helped me see how this bizarre, painful experience can also be an opportunity for love and growth 🌱. Okay, that’s all, I’m leaving. No, you hang up!  

Love,

Julia