Hadïh, I know this is a bit of a different topic, but the last few days were rough, and I just want to type it out, I guess. I was at work yesterday wearing my polarized Aviators at our shared desk with my coworker. It’s a pretty open-concept office. When a new client came up, stared at me, and went, “Look who thinks they’re the hot shit. Well, guess what? You’re not cool, especially if you’re doing this job.” now I have someting called Keratoconus which causes your cornea too thin and bulge out, which leads to light sensitivity, ghosting and for me, migraines.
In the moment, I was kind of half-shocked, half-stunned, and embarrassed all at once. Thankfully, a manager and coworker were both there and came to my defense. My coworker was like, “It’s a medical thing,” and my manager was like, “My employee treats you with respect. I expect you do the same to my people back or leave.” Make no mistake, in that moment, it was great. I knew I had managers and coworkers backing me up, but it also got me thinking how things like Keratoconus are just invisible most of the time, you know?
Light sensitivity was sucking hard during this shift, and this just felt like life throwing another curveball in my direction. Now, what I have been thinking about is just like, how can we, not as individuals, but as humans as a collective, not be jerks to each other, you know? I should not have to, or will ever, wear a tag that says “wonky vision,” “blind,” or anything like that.
While at the same time, I do wish we could educate on Keratoconus more, get it so much better known than it currently is. But the problem is, at the end of the day, it is an “invisible” problem. In the NBA, Golden State Warriors player Stephen Curry has Keratoconus, and I was like, yes, this is when it may start to get more attention because a great NBAer has it. Maybe some talk from outside KC patients will happen, and people may get curious about it and ask questions. Only for the media to ask him questions and he laughed it off and made it sound like it was just nothing.
Now, with his access to resources and services, it probably was nothing to him. However, to me, I find zero amusement in what it does to my daily life. At the time, I’m not even going to lie, the laughing off of it hurt. When this same thing has threatened my hobbies and career, seeing a famous person say it’s no big deal, the media making too much of a big deal actually felt like going backwards, you know? However, on the flip side, the people who know me and have my back, the people I call friends, are like the ultimate allies, you could say. They actually do go out of their way to educate me about if I’m hanging out and the group involves their friends I don’t know fully and I’m “off.” I gave these friends permission to explain my eyes, and I’m probably just internally dying due to lighting conditions at the moment, and that has honestly made social situations go from absolutely intense anxiety-filled time to I can be me and relax, and if I need to duck out, people won’t just think I’m weird. (I mean, well, uh, yeah, different story xD, that’s all I’ll say on that one.)
Keratoconus is a devious little bugger to deal with. One day you’re fine, the next you’re at work dying in light, wanting to go full Vampire in the dark mode. Now, unless you stare directly in my eye you would be unable to tell anything is wrong with me, and yeah, no thank you direct eye conact like that would be weird for both of us, lol. I’m not asking to be treated any differently; I’m just asking not to get made fun of as one adult to another. Just give me the extra minute to make sure we finish the interaction on a positive note, and done right the first time, and everyone is happy. You never know what the other person is fighting. Anyway, I’m gonna go build my Z Scale train loop inside the centre of my N scale loop, which is inside the HO scale layout. (Send help) Misiyh and Hilhghen’ so’ honzu