Thought You Ought To Know

I don’t process well. When shit happens, I tend to just ignore it, because obviously, if you ignore something long enough it will go away right? That or… it’ll just come back and hit with all the force of every single second you’ve ignored it and you have a really crappy day; but then you can go back to ignoring it. It’s probably better not to ignore it, to just keep working it out in your brain and come to terms with whatever it is that is happening. Maybe it’s easier to stay positive that way, I don’t know though, I’ve never actually tried it.

If you’ve thought about asking, I’ll spare you the trouble. “How’s your eye?” My eye is being ignored. Mostly because when I think about it, I think about everything else that it affects in the future and I hate when things can’t go my way. I know there’s no use in planning out every second of the future, that would be impossible and quite infuriating, but I did have an idea of how I wanted things to go and losing a significant amount of vision in my dominant eye was never part of that plan. For those wondering what exactly is going on, I have Ocular Histoplasmosis in both of my eyes. The cause of this strange sounding syndrome is by breathing in spores that come from dirt and mud in several states near Ohio. Where we used to live. After being inhaled the spores somehow migrate to your eyes and can leave scar tissue. The scar tissue can then create complications, such as bleeding, that may cause severe vision loss; permanent, severe vision loss. My left eye is bleeding, and there is no cure for it. I can receive monthly injections to help control the bleeding and the medication has sometimes actually reversed some of the vision loss if it is not too severe, but every patient is different.

Before going into the doctor, I had no vision in the focal point of my left eye. If I looked you in the face with my right eye closed, your face would be a blur and the things around you would be in perfect focus. My peripheral was 20/20 with my corrective lenses, there was just nothing there in the center. After having one shot, a literal needle poke in the eyeball, I have regained some vision. It varies from day today, sometimes it’s a halo effect where I can see in the very center, but there’s a circle of blur around it. Sometimes,  people look like they are standing in a fun house mirror and not right in front of me. Sometimes it’s that same, depressing blob of blur right there where I should see every detail of every face, every beautiful scene that life has to offer. Instead, there is nothing.

Just a few weeks ago I was standing on the shoreline of the most beautiful lake I have ever seen. I was already experiencing the issues with my left eye, and still the views were absolutely breathtaking. I love the mountains, I love their majesty and how small I feel looking up at them. I love how serene they are, how peaceful it can be to sit idly in nature while the rest of the world just keeps on moving. It’s easy to get caught up in this beauty and think that the peace you’re feeling in that moment could never be shaken. That was a Friday, and everything changed just five days later.

There are moments which mark your life; moments when you realize nothing will ever be the same and time is divided into two parts: BEFORE this and AFTER this.

I feel like my life is chalk full of these moments but this quote is more real than ever for me. I’m not battling a deadly disease, I didn’t lose a limb or my home. I really have no right to complain or worry about it at all, but this just seems too big for me to handle. I’ve been through a lot in just a few short years, and this one definitely takes the cake. The idea of never regaining vision in my left eye and the lifelong threat of the same thing happening to my right eye is absolutely terrifying to me. I think it’s safe to say that no one ever plans for these things to happen, I sure as hell didn’t, and yet, here I am… an Amsler grid test hanging in my kitchen like it’s a totally normal thing to stop and cover one eye to make sure I’m not losing even more vision. Like it’s totally normal for a 23 year old to have monthly injections of a medication used on people with macular degeneration. Do you know who has macular degeneration? Not 23 year olds. Not people who are thinking about having children within the next year or so. Not me. And yet, to the injections I will go, every stinking month until major improvement is shown and I can go longer between shots.

Overall I think I’ve done pretty well with the whole acceptance stage. But, then again, it’s hard to say if I’m accepting it and truly being positive, or just ignoring it because that’s much easier to do anyways. Everyday life is a great distraction until something shows up blurry. I sometimes feel this overwhelming need to at least appear strong, to appear like it doesn’t bother me, like I’m totally okay and super duper happy-go-lucky. That is most definitely, not always the case. Yes, some days I really am okay with it, because you know what? There’s nothing I can do about it, other than what I am already doing. But other days, let me tell you, it is hard to swallow such a big change. I had a rough day last week, and my sweetheart of a sister reminded me that I am never alone, that I’m allowed to be angry but to not forget that I am strong. That I can and will make it through all of this, no matter the outcome later on. I needed to be reminded of that, and I’m incredibly grateful to have such an amazing support team to surround myself with. However, to that support team, I just want to apologize in advance for the days where I can’t be okay with all this. For the days where I’m sad and can’t cheer up, for the days where I’m angry and don’t want to get happy. Thank you in advance for loving me a little louder those days, for reminding me that it’s okay to feel that way, and that I am never alone. You guys will make getting through every second of those days so much easier, and I won’t be able to do it without you.








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