So last time I touched on how I've had my eye issues for half my life. I got into what happened, how it started, how I felt, and some of how it's affected me. I'll expand on that a little this time, focusing on how things have changed socially.
As I mentioned before, it hasn't been much of an issue with my family (and not in a good way, mostly). They're just used to me wearing the visor and shades when I'm out and know that I see the ophthalmologist regularly. I missed more school when they were bugging me extra. They've never really made any accommodations for me, so we argue about lighting a lot. Usually, I'll just end up in my room where I can control it.
They know that something's wrong, but I don't think anyone of them get how serious it. I doubt any of them can tell you what it is. None would get anything close to macular serpiginous chorioretinitis, and I'd be surprised if they mentioned the retina. Blind spots would probably be mentioned, so I guess that's something. The light sensitivity is easy, so they are awarded no points for that. At least with my parents, you'd think they knew what something I've had half my life is called, or at least had the basics down. Before they found the tumor, my mom accused me of faking being sick because I'd done it soooo many times before. Of course, she couldn't give ONE example because that's a bullshit statement. Was I faking the wooziness like I faked going blind? Actually, yes, since both are real. As part of that argument, they said that they don't know anything because I won't tell them what the doctors say. Again, that's not true. I'd tell them, then they wouldn't listen or pay attention. And, no, I'm not taking my mom with me into any doctor appointments. I'm a grown man and she can trust me when I relay what the doctors say (despite her beyond ridiculous claims, she has no reason not to believe me) or she can choose not to take my word for it.
As part of my case that they didn't care enough to listen, pay attention, or remember, I asked them what was wrong with my eyes. They should have known about that, but the only part they got right was mentioning blind spots, and that was almost a lucky guess. They weren't sure about that. I've had this going on since I was 15, mind you. It's never gotten better and it's always been an issue since then. Hell, when I was still a kid, my mom did go to most of the appointments with me, so she heard it all first hand. She'll cry some shit that her liver issues affect her memory and all that, which is true, but something this important gets forgotten? What's my step-dad's excuse? As for my biological dad, I have no clue what he knows or thinks he knows about my eyes.
When my eyes messed up, a lot changed for me. I used to run around all day everyday. I was rarely home. I was either at school, playing sports, or hanging with friends. I didn't watch much TV, other than sports. The only show that I made a point to watch before my eyes went bad was The X Files. I was one of the smartest kids in my class and was recognized as such. I did very well in school, and it was pretty easy for me. That's not to say that I didn't work hard at it, but it all came very naturally. There was nothing that I couldn't understand or work out if I studied it hard enough. Being smart was part of my identity.
But after having to deal with not being able to see as well, and having the light sensitivity, and just having bad days when it was uncomfortable to have my eyes open, things were different. I couldn't play outside as much because of the light. On bad days, I couldn't do much of anything. I was depressed going through it all, so I didn't even want to go out a lot of the time. Even though I couldn't really see everything, I started watching more TV since I was inside more and didn't have anything else to do. School was much harder. I'd go days or weeks without being able to read. I was absent a lot. When I was in class, I was so far behind that it was almost pointless to be there. It was frustrating because I knew I could do the work, I just had to be able to use my eyes to see it. I was less social, frustrated with my limitations.
I lost all of the momentum I had playing sports. I lost that part of my identity, too. I didn't play football junior year because of headaches that were most likely related to the stress of dealing with my eyes. Too, I was still figuring out how to deal with my limited sight and the issues with light, etc. I ended up being the camera man that year. It was nice to still be a part of the team, but it wasn't the same. We had a lot of new players, many from the 2 high schools that closed the previous year. I didn't get the respect I deserved from most of them because I was just the cameraman and not a player. I kinda/sorta ran track again, but I was never in great shape because I couldn't run frequently. I became more of a student manager and would just hang out at practice so I wouldn't have to be home.
I was lucky at school because my teachers all worked with me. My friends helped a lot, too, letting me borrow their notes and working with me to catch me up. They knew me from before--I wasn't just being lazy. It was still hard, them not knowing what to say or what to do and me being just as lost for words. I think a few of my classmates resented, or at least didn't like, the special treatment I got. That irked me quite a bit at the time, but they just didn't realize how bad things were. It's a hard thing to quantify (which hasn't helped me with my SSI stuff). People didn't understand that feeling OK enough to play basketball wasn't the same as being able to read and write. Being active, playing ball, running around...those were the only things that helped me keep my mind off of how bad I felt. Exercising felt good, too, made me tired, helped me sleep. My vision wasn't as much of an issue playing sports. It didn't matter if I couldn't see the basket, I knew where it was, it was intinctual.
It was different in college. I'd known most of my high school friends for awhile, many from junior high. People knew me, knew what I was capable of, and saw that a major change was forced upon me. I came into college as the visor and shades guy. I knew no one, having only spoken to my roommate (who was from Rhode Island) on the phone to sort out what we'd bring for our dorm room. They only saw that I missed a lot of class and that I was in bed a lot. They didn't know how smart I really was, despite being admitted into such a prestigous school. I wasn't a legacy kid and I didn't buy my way in--I earned it. But they never saw me without limitations and just assumed.
It was hard because I couldn't do much to show them my potential, how smart and creative I was, and what I good student I could be. They only saw that I hung around the dorm a lot, wearing the visor, missing class, dropping classes, and just getting by. If they had only known me before, when I didn't have to work so hard, but when I could work as hard as I wanted...if they only knew how smart I had to be to do as well as I did, learning how to do problems while I was taking the test since I couldn't study before and just ran out of time...If only they could see my tears almost every day, sad, frustrated, depressed, feeling like a waste and a failure, wondering if I should drop out of school...
It hurt every time I missed class, had to ask for an extension, dropped a class, or let my group down. I both loved and hated group projects. There were the benefits of being able to rely on my group, but then there was that sinking feeling when I couldn't carry my own weight, bringing them down forcing them to work harder. It's much easier to disappoint only myself in that way.
It hurts that so many people just thought I was lazy. Despite how it may have seemed, I took school very seriously. You can only do what you can do, though. It was unnerving being looked down upon, like maybe I didn't belong. I didn't understand why I didn't get the benefit of the doubt more after explaining my situation. School gets extremely difficult when you're unable to read anything significant for weeks at a time. Skimming websites isn't the same as reading for comprehension and really trying to learn complex concepts.
A lot of that perceived laziness carried over after graduation when I got woozy. "Here he goes faking/exaggerating again." "Why won't he just man up and do the work?" Isn't it something that I was happy that they found a tumor in my head, if only to be a FUCK YOU to those people? I shouldn't have needed that validation. I'm not lazy. I don't mooch. And despite absolutely loving helping others, I hate asking for help even more. It kills me to need special consideration. I can't stand just sitting around, doing nothing, but when you feel as constantly bad as I do and as I have, from my eyes, from the wooziness, that's just how it is. I'm not content staying put, either, I try things that might help. I've tested different technologies, different glasses, different therapies and most of them haven't worked for me. I don't enjoy my situation. I never have. I'd much rather be a productive person, working, helping people. I'm tired of merely surviving, hoping that doctors will find a way to heal me. And I do scream and yell and cry--it does bother me. I just try not to do it around others too much. Why should I make the time that I'm spending with someone else unpleasant? Why can't we just enjoy each other's company? Why can't I be happy that I'm not alone for awhile?
I've missed out on fun stuff, too. I've had to cancel with friends. I've missed birthday parties, family get togethers, and important events like funerals. I wasn't able to attend fun outings on campus many times. My eyes forced me to call into work, costing me money. Being sick, with both my eyes and the wooziness, hasn't just been a convenient excuse to be lazy and only manifests itself when I want to get out of doing something. It is that bad. It is that constant. And it really does suck.
More than dealing with the physical issues--and not that going through all of them is easy--is coping with the social problems. I have so many limitations that are legitimate, then I have those placed upon me by the perception that things maybe aren't as bad as I make them out to be. Being alone and lonely (alonely, I call it) is the worst feeling in the world. It hurts more knowing that I'm a good person with a lot to offer, but that I'm just held back by all of this shit that's out of my control. I don't understand what I've done to taint my word. I'm not a liar. I'm not a faker. I'm not one to exaggerate a lot. I'm not always right, but I am always true. Why isn't that enough?
Things are better now than they have been. Most people at least believe that something's going on with me. I still don't think that everyone understands just how serious and constant and frustrating dealing with all of this has been, but it's a start. I appreciate the support that I've gotten so much that I'll never have the right words to express my exact sentiments. It's still hard going through this, but it's easier when I feel connected to the world, to you guys, and when I have a reason to fight. Please stick with me as I work on being able to stand on my own. Know, too, that I'm here for you. :)
Thanks for your time and I'll try to be more upbeat in the future ;).
-B
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