The Vision Thing
One Saturday afternoon in March of 2023, I was sitting on the couch reading comic books. Back then I was buying around 30 a week, and reading them took up a lot of my leisure time and leisure budget. Over the course of the afternoon my left eye started feeling weird, by which I mean I could feel something. It's weird that unless something's wrong, you never really feel anything with your eyes, right? After a few hours it progressed to actual pain, and I went to look at my eye in the mirror.
Friends, it was solid red. This wasn't a Visine commercial, it was a nightmare. I figured it was probably just pink eye, so I told my wife I was going to go to one of those places that looks like a converted Pizza Hut where they charge you $160 and tell you that you're fat: urgent care.
By the time I got there, my eye was hurting badly enough that I had to keep it closed and put my hand over it to avoid any light getting in. I got weighed and had my blood pressure checked, and they let me sit in a room with the door closed and the lights off. Eventually a medical professional of some sort came in, looked at my eye and diagnosed me with viral conjunctivitis: pink eye. He told me that what I was feeling was photophobia, and it would probably pass on its own, but he was happy to give me some eye drops for bacterial conjunctivitis, just in case. I was also super contagious, and shouldn't touch anything or be around anyone until the symptoms passed. If things didn't improve in 10 days, I should see an ophthalmologist. He gave me the number to one he recommended and handed me some slips of paper from a weird receipt printer and sent me home.
When I got home, I looked at those papers, and one was a receipt for $160, and the other was a note that I was too fat.
My eye was incredibly painful. I ended up spending ten days sitting in bed with the curtains closed and the lights off with bouts of crying. Occasionally I would have to write a message to my office to let them know that I couldn't do anything at all for work: no meetings, no Slack, no programming. Looking at my phone long enough to send or read a message would leave me in pain for an hour.
On the 10th day I called the Wilmer Eye Institute and made a same-day appointment. My wife had gotten me an eye patch which didn't really keep the light out, but if I packed it full of gauze, wore sunglasses and closed my eye really tightly, I could bear to be outside. The doctor who saw me was shocked when I told her the story of how I got there, and not primarily because the original diagnosis was wrong, but because I had gone to urgent care for an eye problem. "Why would you go to an urgent care instead of an ophthalmologist," she asked. My suggestion that they should make it easier to spell didn't convince her.
She gave me a prescription for steroid drops to replace the useless ones and made me an appointment with a specialist in 6 days. Relief from the steroids was almost immediate. My photophobia was gone by the next morning and while my eye was still red, I could go back to normal life.
I saw the specialist the following week and I was diagnosed with anterior scleritis. That's one of those medical terms that seems really complicated but it just means that the front (anterior) of the white of my eye (sclera) was inflamed (-itis). It's usually associated with an autoimmune disorder, so I talked to them about how I sometimes had blood tests that were weakly positive for arthritis and had been seeing a rheumatologist for chronic undiagnosed wrist pain. They told me keep using the drops, get a referral to see the rheumatologist again, and try to relax.
I use the drops for another 4 days until the redness all concentrated in one spot on my eye where a nodule began to grow. It looked like I had a large pimple growing on the surface of my eye right next to my iris, with red blood vessels all around. Here's what my eye looked like, but I caution you not to click on it unless you're not bothered by body horror.
I called their office and they said that sometimes the disease progresses to "nodular anterior scleritis" which is no big deal as long as I kept getting treatment. I, however, know how to use this Internet thing, and discovered that in 5% of cases it continues to progress to "necrotic anterior scleritis" and I bet you can guess where that leads.
I kept taking the drugs and having a weird bump, but in a couple weeks the nodule and redness had reduced. After another two weeks I went back for a follow-up. They measured my intraocular pressure (IOP) and it was three times higher than normal. They asked me if I had the steroid drops with me, I said yes, they asked if they could have them, I said yes, and they threw them in the trash. It seems that steroids can cause that sort of thing for some patients and if it continues, your eye can burst. I came back a few days later and my IOP was down, so they scheduled me for more follow-ups.
In the meantime, I saw my rheumatologist who sent me out for other tests in the hopes of sorting out this autoimmune condition. That didn't turn anything up, but she asked me if I'd gotten the hand surgery we'd talked about in 2019, and I reminded her that there was a worldwide pandemic right afterwards, but she insisted that I talk to a hand surgeon. But that's another story.
In the notes for my first monthly follow-up, they wrote, "if starts to have melt in future will need systemic therapy" which is a reference to "scleral melt," the technical term for your eye going necrotic. I asked them how likely it was that the problem would recur, and they said they didn't know. I asked how they would treat it if steroids were off the table, and they said they'd figure something out. I asked if the same thing could happen in my other eye, and they said yes. I asked what would cause it to recur, and they said that it was mysterious, but I should avoid stress.
Finding out that your eye could develop a melting necrosis at any time with no real way to treat it is very stressful, but I guess that can't be helped.
It's been just over two years since this whole thing began, and I made a lot of decisions since then with that discussion looming over me. I started riding a bike, and then I started riding it a lot. Things got really stressful at my job, and I quit. I lost a ton of weight, started eating better, stopped drinking caffeine and mostly stopped drinking alcohol. Shelley jokes that all I used to like was cocktails, comics and computers, and now I've give up all of that for bikes. Avoiding stress is impossible, especially with all the other things in life. In those two years my mother developed vascular dementia and passed away, and my father is awaiting treatment for an aortic aneurism. But the idea of losing your vision by way of your eyeball exploding or melting is highly motivational, so I've done my best to manage my feelings as best I can.
I don't have a grand conclusion to this story except to say that while I had a very obvious and immediate moment where the stress that was killing me suddenly took center stage, stress might be killing you in more subtle ways. Be on the lookout for it, and find ways to manage it. I don't know if that's meditation or medication, a career change or just riding a bike, but please take care of yourself.
