Eyeballs are Crazy

Okay. My blog is usually a place for stupid stuff, random and rare rants, and tons of contests, and I almost always avoid getting personal about things, because sometimes it feels weird to just open up and talk about something while doing so on the Internet. It kind of makes me feel like this.

And I’m not even sure why I’m choosing to talk about this now. Maybe it’s because I haven’t fully wrapped my head around it. Or really, seriously sat down and thought about it and what it really, truly means. (I’m loving the adverbs right now)

So here’s my story about eyeballs.

About two years ago, my dad went to the eye doctor and he was diagnosed with a form of Macular degeneration– in other words, a progressive loss of sight, and many forms of macular degeneration are hereditary. So all the kids needed to get tested. I did. Results came back negative.  And I was like…

Dodged that bullet.

I mean, I’ve always had crappy eyesight. I’m near sighted AND far sighted, but I can see without glasses and with glasses, even though I’m supposed to be wearing glasses all the time. So all is good in the hood.

Then I decided at the end of last year, I needed new frames. Probably a new prescription too, because the current ones weren’t as good as they used to be. Sometimes my eyes were still get blurry, and my eyes weren’t adapting well when going from dark to light. So about a month or so ago, I went to get new frames and probably a new prescription.

Within about a minute of the eye guy looking at my eyes, he pulled back and asked if anyone in my family had macular degeneration? I said my dad did, but I was tested and I was negative, so can I just get some new frames?

I got new frames.I also got referred to a retina specialist.

Now, I wasn’t really concerned. My dad is like 70 years old, can see to drive and read and all that good stuff. The worse case scenario was losing my sight when I got older or having to have eyeball injections, which is super frightening to even consider, but doable. Maybe surgery, but still the macular degeneration I thought my dad had wasn’t that big of a deal. At least not something I needed to seriously worry about right now. But I did go to the retina specialist

And I was like…

To the special eye doctor person.

And he was kind of like…

Okay. He wasn’t like that. He was actually pretty nice. So was the doctor who nearly blinded me for half of the day and probably wanted to throat punch me because he had to HOLD MY EYES OPEN FOR ME.

Anyways, testing for macular degeneration sucks. It’s not painful. I’m just a wussy and don’t like anything near my eyes, including people, light, fingers, pressure gauges, needles, contacts, air. I’m also currently YELLOW because of the florescent dye. I’m yellow. Seriously.

After I went through all my testing, special eye guy was like “How do you see as well as you do?”

Me: “Um… I cool like that?”

Turns out there’s lots of blood vessels in the eyeball and when they swell, it’s not a good thing. Also turns out I have lots of swelling of blood vessels in my eyeballs, so much so that the special eye guy was like HOW DO YOU NOT FEEL THIS?

But it also turns out that the macular degeneration I thought my dad has wasn’t what I quite possibly have. Or probably most definitely have. Or whatever.

Primary Impressions show I have retinitis pigmentosa with a few other unpronounceable and difficult to spell words added to that. Besides sounding like something that reminds me of bad breath, it’s a pretty serious eye disease that causes severe vision impairment and often blindness.

People with RP  can go legally blind, can loose peripheral vision (tunnel vision), and they also can go completely blind. I’m already losing some of my peripheral vision and I have one more test in March to determine how much, and I guess, where they map the pathology of the disease, and try to determine if it is hereditary or not, and are a 100% sure this is what we are working with. Which they seemed pretty sure.

When I heard this news, my first response was how do we treat this or prolong it? The response was there is no known treatment approved at this time. There is no way to prolong it. And the scary thing is that the later in life you experience the symptoms, the more rapid eye deterioration is. I’m not sure yet if 33 years of age is considered later in life, I’m sure hoping it’s not, but I’m thinking they are comparing it to an infant, so yes, it would be considered later in life.

So I was kind of like, whoa, this sucks. I really would like some Bob Evans for lunch. And I got some Bob Evans for lunch. Took a nap since I was like Gizmo screeching “Bright lights! Bright lights!” and then I got up, and was like hmmm, I might have to take this seriously.

Right now, we’re getting the swelling down with eye drops. If that doesn’t work, there are many ways to get the swelling down. Then I have that other field vision test, and hopefully more information on what to really expect other than the Hail Mary of not going blind.

But it wasn’t until this evening that I was sitting here, putting together a contest, when I suddenly felt this pressure to WRITE. To write EVERY book that’s in my head now because writing is going to be really hard if I don’t have functioning eyeballs. I mean, it’s possible, but I’m sure it’s difficult. But that pressure was seriously paralyzing for a moment, because I was like how WILL I continue to do what I love with deteriorating eye sight, when the glare from the computer becomes too much, or my vision goes into a tunnel that eventually snuffs out? How do you adapt to that? How am I going to continue doing this, something that I seriously love doing and probably a little addicted to doing?

Then I was like holy shit, I wouldn’t be able to see Theo James’ face or the Supernatural boys, and all kinds of other, more important things than writing like reading, driving, seeing things in general, if I go blind.  And I was pretty much like

The crazy thing is I don’t know what will happen. I don’t think anyone really knows what will happen in terms of progression. In reality, I could get really lucky and they tell me after my next appointment that they were wrong. Or I could get lucky and have a couple of more decades of my crappy but effective eye sight. Or I could not be so lucky. I really don’t know, and I guess that’s why I’m writing this post, because I can’t sit and think about it, dwell on it. I can’t focus on it, because that’s not going to change anything. All it’s going to do is waste time. So like with writing a book, getting it out there and putting it out there, you have to let it go at that point. So that’s what I’m doing I suppose. Getting it out and then I have to let it go.

This is me letting it go.

This is also me posting a gratuitous picture of Theo James.