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
Showing posts with label macular serpiginous chorioretinitis. Show all posts
Showing posts with label macular serpiginous chorioretinitis. Show all posts
Thursday, September 30, 2010
Wednesday, September 29, 2010
Half my life...
I have been visually impaired for exactly half of my life on Tuesday, September 28, 2010 (thanks to http://www.timeanddate.com/ for the calculations). I was 15 years, 11 months, 4 days or 5817 days old on Tuesday, October 25, 1994, the day I first detected something wrong with my vision. Initially, I just saw some floaters, little specks that moved around. I didn't think too much of it. I was at football practice and maybe I just got some dirt in my eye. It was more distracting and annoying than restrictive, so I didn't think much of it. I don't remember seeing them as much during the school the next day, but they were definitely there during football practice again. Too, there were spots where I couldn’t see and my vision was becoming blurry. I talked to the athletic trainer (who was also an assistant coach), and he recommended some Visine, thinking, as I did the day before, that I'd just gotten some dirt or something in my eyes.
I didn’t think too much of it, expecting it to be gone by morning. School was out Thursday and Friday, but I still had to go to practice. The spots got bigger and and the blurring started getting worse and I began to worry. I told my mom that maybe something was wrong and that I wanted to go to the doctor. We had neither medical insurance, a car, nor enough money to pay the hospital bill, so she told me to wait a few days and see what happened. "Maybe it will go away," she said. I was worried and really wanted to go, but I decided not to push it--yet. We rented some videos that night, and that’s when I got scared. I couldn’t see what was on the television screen--the blind spots were in the way. I had to focus on the corner of the screen to see the middle of it.
We had a game that Friday night, the second round of the Indiana High School playoffs. It was the first time my school had made it past the first round in long while. We were pumped. We knew most of the guys on the other team because the majority of them were bused out of our school district. Our starting quarterback had been banged up for the latter half of the season and got hurt early in the second half. The back-up was absolutely hammered on his first play and was slow to get up. Due to injury, I had been the second string QB for most of the season, but I was third for this game. I was accustomed to being ready to go in, but I feared that if I were to play, I would not be able to perform. I was a quarterback and I wouldn’t have been able to see the receivers, and we needed to throw. Fortunately, I did not have to play. We were cheated by the officials and lost the game, but that’s another story.
I got more and more panicked as my vision deteriorated. I argued with my mom that I needed to go to the hospital. She finally took me just to shut me up. My aunt lived a couple blocks away, so she borrowed her car. Why couldn't she have done this before?! I was told on Saturday that I only had an infection and was given some eyedrops. He made an appointment for Monday with a specialist just to make sure. We went to that consultation on Monday, Halloween, and literally ten different doctors from maybe 6 different countries were called in to look at me. I had no clue as to what was going on. I was eventually told that they thought I had macular serpiginous chorioretinitis (basically, scars on my retinas), but to go see another specialist at the hospital next door. I asked if I was going blind and the doctor said that he didn’t know for sure, so maybe yes. I started crying. I was scared to death.
The next set of doctors confirmed the diagnosis after some further testing and prescribed some prednisone to stop the scarring. They didn’t know if it would work, and if it had not, there was only one other medicine to try. I was even more fearful now. It's a rare condition, especially for my age, and they don't know much about it. There's no known cause and no way to predict if or how much or when it will get worse. It won't get better. I took the medicine for a month and it apparently worked. The active scarring stopped, anyway, and that was the goal. That was good, but damage was already done.
We didn't have a phone, but my grandma lived close by, and we gave her number to the school. One of my teachers left a message for me to call him back on Thursday, wondering why I'd missed 4 days of classes. I explained the situation, and he convinced me to come back to school on Friday. I remember not wanting to be there, on the verge of tears the whole day, not sure what to tell people. My friends and teachers were all nice and supportive, but they had no words, either, other than the standard "hang in there." I probably watched football and slept most of the weekend. I made it back to school on Monday, but it was hard being there, adjusting to a sudden loss of vision, unable to concentrate, not wanting to break down in front of everyone. I missed the rest of the week. The following Monday, I started going to school regularly again.
I turned 16 a couple weeks later. I don't even remember that birthday, but I do know that it was not sweet. Most of us think about getting our driver's licenses and all of the normal teenage stuff. All I could do was wonder if I'd go completely blind. Most of my birthdays were either unremarkable or ruined somehow, but this one especially so.
Before my eyes messed up on me, things were going fairly well. School was good. I enjoyed my classes, was learning a lot, and I was getting good grades, as usual. I liked my prospects playing sports. I was doing alright socially. There wasn't a particular girl I liked, but I was content with that situation and open to possibilities. Things at home were relatively stable. We were still poor, but we were getting by. The heat and lights and water were on. I was happy, for the most part, and looking forward to life. I was confident in myself. I liked who I was and was more comfortable with myself than I ever had been.
Then BOOM! I can't see. Everything is in disarray. How will this affect school? And sports? Friends? Why did I have to argue for 3 days to go to the doctor? Why wouldn't my mom accommodate me after? How hard is it to turn on the end table lamp instead of the overhead light? Would any girl ever want me? I wasn't all that lucky in the romance department when I didn't have anything physically wrong with me, and now I'm going blind. Who would want to deal with that? Will I be able to drive? How am I going to get out of here? Is it going to get worse? If so when? What am I going to do then? Who's going to take care of me? How long before I can take care of myself? What about school then? College? What did I do wrong, why is this happening to me?
I figured out the light sensitivity pretty quickly, though it took awhile to figure out what to do about it. Glare bothers me quite a bit, especially from overhead. I had to carry around a note from my doctor so I could where my hat at school. That was a pain, showing it to teachers I didn't know. I experimented with several different kinds of glasses. I was already a little a nearsighted, and had some spectacles for that. I tried different shades of clip on accessories, dark for outside, yellow for inside to reduce glare. I got new, transition lens bifocals, hoping that magnification would help me see when reading. It took a couple days to get used to those and I almost fell down the stairs a few times. None of those ended up working and I ended up settling on sunglasses most of the time. The hat turned into a visor at the end of HS. The brim is wider, and it leaves my head open, keeping it cooler.
The biggest issues are with reading. The print has to be big enough or the blind spots make it impossible to see. Since my eyes have to work harder, they tire more quickly and once they're done, they're done for awhile. The weather affects them--they don't do well in the dry cold. Lack of sleep hurts, and I've never slept well. The more I'd use my eyes (mainly reading), the worse they'd feel. There's an accumulation effect. It was harder to see the chalk board in class. We ended up getting worksheets and assignments blown up into larger print. My books were copied to be made larger. I was given extensions to complete assignments. All of my teachers were really cool and worked with me. I tried taping lectures and listening to books on tape, but those didn't help. I just fell asleep. It finally came down to "I'll get to it when I can get to it." I was lucky to have the support that I had at school. I was accommodated very well in college, for the most part, too, and I'm appreciative of that.
That's not to say that it was easy. I had always done well in school; it came naturally to me. I never really had to study much, and when I did, I could and did wait until the last minute. I still did well, though. My study habits had to change considerably after all of this. I could no longer do the work when I wanted to do it, rather, I had to do it when I physically feel like it. I had to stop in the middle of assignments, ruining the flow. I'd fall behind because I could’t things when they were assigned. It was rather difficult to function “normally” in class. I was often unable to take notes, forced to rely on my memory a great deal more. My junior year of high school, I did over a semester’s worth of calculus work, some sixty tests and quizzes, in two weeks. I did about the equivalent amount of work for my AP English class senior year. It only got harder in college with more challenging courses.
Macular serpiginous chorioretinitis
= scars on retinas = blind spots
*Rare, especially for young age at outset (October, 1994)
*Not much known, nothing new
*Best guess = auto-immune
*Blind spots in different places -> compensation
-> more work -> strain
*Strain -> discomfort/pain -> stop reading & rest
-> academic/work issues
*Light 'charges' scars, making them completely prevalent
in each eye (much like toy glow in the dark stars)
*More light (intensity, frequency, duration)
-> less/no compensation -> harder work
*Bright flashes (e.g. cameras) are worse short term
(minutes to hours)
*Long exposure to bright light is worse longer term
(hours to days)
*Left eye scar is more central, blind spot worse
Right eye got worse
*Was stable since original scarring until July, 2008
*Similar symptoms as 1994
*Scar is now bigger/more central in right eye
*Blind spots overlap more = less compensation
= more loss of vision
*Still getting used to new spot - seeing flashes
*Stable now - could get worse again whenever
My eyes are still an issue, but they haven't specifically bugged me much lately. I do have to take breaks from messing around on the computer and from watching TV, but the wooziness usually gets to me before my eyes do. I have to move my eyes/head around a bit to see what I'm looking at, and that motion gets me woozy. My eyes are worse in winter with the cold and lack of moisture. The eye stuff is completely unrelated to the tumor stuff--a separate problem.
The scars had been pretty stable since right after they originally flared up. My right eye got a little worse a couple of summers ago. It was always in the back of my mind that they could get worse, but I suppose I'd become complacent and didn't think too much about that until they did. I wondered if this was it, if I'd completely lose my sight this time. The episode didn't last long and stabilized in the time it took me to get seen by the ophthalmologist. They don't know much more now than they did when I was 15.
Though I'm used to my limitations, it's still scary thinking about the possibility of losing my sight completely. Try to walk down the street with your eyes closed--do not peek--and feel how frightening that is. I do it every once in a while to prepare myself if my condition gets worse. It isn’t easy. The blind spots and impaired vision are always with me. Very often I'll gaze at the alarm clock and think that I forgot to turn it on, but then I get a better angle and realize that the light was just obstructed by the scarring. I'll freak out that I didn't hit the timer button on the VCR (yes, I still use VCRs), but then I'll observe that I just couldn't see that, too. People have to get fairly close to me in order for me to see their faces. Those that I know well are easier to recognize by their gaits and body and clothes. It's hard to read signs in public, or to see the scoreboard at games. Reading things posted on TV is difficult.
I appreciate sight more. I could sit all day and look at the clouds and watch the sun rise and set. I like to see leaves blowing in the trees and falling to the ground. Rain falling is beautiful. Nature is amazing. In most ways, physical beauty isn’t as important nor as impressive, though still admired, only from a new perspective. I love smiles, especially when directed at me, especially when unexpected. Uniqueness is appreciated.
Halloween isn't my favorite holiday. It never was, really. I always found it odd that we were told to stay away from strangers but on one night a year, we could ask them for candy. Being poor, I never had a good costume, either. Being diagnosed with a serious eye condition on that date sealed the deal. I'll still eat the candy, though :). I don't get as depressed as I used to on Halloween. The last couple years, I didn't think about it being an anniversary until after the fact. It'll get me a little this year, I think. It's been half my life...and counting.
My eye stuff has been a big part of the riff between my mom and me. First, I had to argue with her, literally scream and yell, to get her to take me to the doctor. "What? Do you want me to take you to the hospital?" she asked. I guess me saying, "I can't see! I need to go to the hospital!" wasn't clear enough the first thousand times. She still doesn't think she did anything wrong there. It probably wouldn't have saved any of my sight, but still, I WAS FUCKING GOING BLIND!!!! And then she'd make no accommodations whatsoever for me at home. I'd complain, nicely at first, about the light and she'd tell me to wear my hat or glasses. I shouldn't have to wear a hat and sunglasses INSIDE MY OWN HOUSE, especially when it would be very easy just to use alternate lighting. It's bad enough that I have to wear that stuff whenever I'm out of the house, but at home? And she wondered why I spent so much time in my room. 1) I didn't have to wear extra stuff to see, and 2) I didn't have to be around her. This kind of ridiculousness and uncaring has extended to dealing with the tumor stuff, too, but that's for another time.
Wow...now it's been slightly more than half my life I've dealt with this. I've had this longer than I haven't. It'll never go away barring a major medical breakthrough. And it's crazy that something so serious and that dominated so much of my life is now playing second fiddle to something else that's also very rare and even more severe. Even though the wooziness and tumor stuff dictate so much of what I can and can't do, whenever I get too happy or too content, all I have to do is close one eye and look directly at something. It's instantly humbling literally seeing that limitation.
If/when I get better from the tumor and the wooziness, I'll still have my eyes to deal with. Any work I would potentially do would be at the mercy of my eyes. It's been so long that they've been an active problem, it'll take me awhile to re-figure all of that out again. It will still be difficult to get things done on time. Quality will have to be sacrificed just to finish many tasks. I'll still have days when I can't do anything productive. I'll still be handicapped. And I'll still have to worry about my eyes getting worse...without warning...again...
It's been rough and hard and sad and so fucking frustrating. I've always tried to be respectful and caring and empathetic and appreciative, but dealing this has forced me to be so. When you can't do something, when it's physically impossible, when there is no way around it, it's hard not to be humbled. I don't know that I needed humbling. I only accept my limitations as much as I have to. It's still hard to be patient through it all, but I've learned to let go some. Being more aware of how precious and beautiful life and nature can be is nice. I guess that's a silver lining. I would much rather have just had an epiphany: hey, wow, isn't that something?! It is what it is and I'm doing what I do.
Thanks for reading...I'll see you later,
-B
P.S.
Ask me questions, anything, anonymously if you wish at: http://www.formspring.me/visorbrent
I didn’t think too much of it, expecting it to be gone by morning. School was out Thursday and Friday, but I still had to go to practice. The spots got bigger and and the blurring started getting worse and I began to worry. I told my mom that maybe something was wrong and that I wanted to go to the doctor. We had neither medical insurance, a car, nor enough money to pay the hospital bill, so she told me to wait a few days and see what happened. "Maybe it will go away," she said. I was worried and really wanted to go, but I decided not to push it--yet. We rented some videos that night, and that’s when I got scared. I couldn’t see what was on the television screen--the blind spots were in the way. I had to focus on the corner of the screen to see the middle of it.
We had a game that Friday night, the second round of the Indiana High School playoffs. It was the first time my school had made it past the first round in long while. We were pumped. We knew most of the guys on the other team because the majority of them were bused out of our school district. Our starting quarterback had been banged up for the latter half of the season and got hurt early in the second half. The back-up was absolutely hammered on his first play and was slow to get up. Due to injury, I had been the second string QB for most of the season, but I was third for this game. I was accustomed to being ready to go in, but I feared that if I were to play, I would not be able to perform. I was a quarterback and I wouldn’t have been able to see the receivers, and we needed to throw. Fortunately, I did not have to play. We were cheated by the officials and lost the game, but that’s another story.
I got more and more panicked as my vision deteriorated. I argued with my mom that I needed to go to the hospital. She finally took me just to shut me up. My aunt lived a couple blocks away, so she borrowed her car. Why couldn't she have done this before?! I was told on Saturday that I only had an infection and was given some eyedrops. He made an appointment for Monday with a specialist just to make sure. We went to that consultation on Monday, Halloween, and literally ten different doctors from maybe 6 different countries were called in to look at me. I had no clue as to what was going on. I was eventually told that they thought I had macular serpiginous chorioretinitis (basically, scars on my retinas), but to go see another specialist at the hospital next door. I asked if I was going blind and the doctor said that he didn’t know for sure, so maybe yes. I started crying. I was scared to death.
The next set of doctors confirmed the diagnosis after some further testing and prescribed some prednisone to stop the scarring. They didn’t know if it would work, and if it had not, there was only one other medicine to try. I was even more fearful now. It's a rare condition, especially for my age, and they don't know much about it. There's no known cause and no way to predict if or how much or when it will get worse. It won't get better. I took the medicine for a month and it apparently worked. The active scarring stopped, anyway, and that was the goal. That was good, but damage was already done.
We didn't have a phone, but my grandma lived close by, and we gave her number to the school. One of my teachers left a message for me to call him back on Thursday, wondering why I'd missed 4 days of classes. I explained the situation, and he convinced me to come back to school on Friday. I remember not wanting to be there, on the verge of tears the whole day, not sure what to tell people. My friends and teachers were all nice and supportive, but they had no words, either, other than the standard "hang in there." I probably watched football and slept most of the weekend. I made it back to school on Monday, but it was hard being there, adjusting to a sudden loss of vision, unable to concentrate, not wanting to break down in front of everyone. I missed the rest of the week. The following Monday, I started going to school regularly again.
I turned 16 a couple weeks later. I don't even remember that birthday, but I do know that it was not sweet. Most of us think about getting our driver's licenses and all of the normal teenage stuff. All I could do was wonder if I'd go completely blind. Most of my birthdays were either unremarkable or ruined somehow, but this one especially so.
Before my eyes messed up on me, things were going fairly well. School was good. I enjoyed my classes, was learning a lot, and I was getting good grades, as usual. I liked my prospects playing sports. I was doing alright socially. There wasn't a particular girl I liked, but I was content with that situation and open to possibilities. Things at home were relatively stable. We were still poor, but we were getting by. The heat and lights and water were on. I was happy, for the most part, and looking forward to life. I was confident in myself. I liked who I was and was more comfortable with myself than I ever had been.
Then BOOM! I can't see. Everything is in disarray. How will this affect school? And sports? Friends? Why did I have to argue for 3 days to go to the doctor? Why wouldn't my mom accommodate me after? How hard is it to turn on the end table lamp instead of the overhead light? Would any girl ever want me? I wasn't all that lucky in the romance department when I didn't have anything physically wrong with me, and now I'm going blind. Who would want to deal with that? Will I be able to drive? How am I going to get out of here? Is it going to get worse? If so when? What am I going to do then? Who's going to take care of me? How long before I can take care of myself? What about school then? College? What did I do wrong, why is this happening to me?
I figured out the light sensitivity pretty quickly, though it took awhile to figure out what to do about it. Glare bothers me quite a bit, especially from overhead. I had to carry around a note from my doctor so I could where my hat at school. That was a pain, showing it to teachers I didn't know. I experimented with several different kinds of glasses. I was already a little a nearsighted, and had some spectacles for that. I tried different shades of clip on accessories, dark for outside, yellow for inside to reduce glare. I got new, transition lens bifocals, hoping that magnification would help me see when reading. It took a couple days to get used to those and I almost fell down the stairs a few times. None of those ended up working and I ended up settling on sunglasses most of the time. The hat turned into a visor at the end of HS. The brim is wider, and it leaves my head open, keeping it cooler.
The biggest issues are with reading. The print has to be big enough or the blind spots make it impossible to see. Since my eyes have to work harder, they tire more quickly and once they're done, they're done for awhile. The weather affects them--they don't do well in the dry cold. Lack of sleep hurts, and I've never slept well. The more I'd use my eyes (mainly reading), the worse they'd feel. There's an accumulation effect. It was harder to see the chalk board in class. We ended up getting worksheets and assignments blown up into larger print. My books were copied to be made larger. I was given extensions to complete assignments. All of my teachers were really cool and worked with me. I tried taping lectures and listening to books on tape, but those didn't help. I just fell asleep. It finally came down to "I'll get to it when I can get to it." I was lucky to have the support that I had at school. I was accommodated very well in college, for the most part, too, and I'm appreciative of that.
That's not to say that it was easy. I had always done well in school; it came naturally to me. I never really had to study much, and when I did, I could and did wait until the last minute. I still did well, though. My study habits had to change considerably after all of this. I could no longer do the work when I wanted to do it, rather, I had to do it when I physically feel like it. I had to stop in the middle of assignments, ruining the flow. I'd fall behind because I could’t things when they were assigned. It was rather difficult to function “normally” in class. I was often unable to take notes, forced to rely on my memory a great deal more. My junior year of high school, I did over a semester’s worth of calculus work, some sixty tests and quizzes, in two weeks. I did about the equivalent amount of work for my AP English class senior year. It only got harder in college with more challenging courses.
Macular serpiginous chorioretinitis
= scars on retinas = blind spots
*Rare, especially for young age at outset (October, 1994)
*Not much known, nothing new
*Best guess = auto-immune
*Blind spots in different places -> compensation
-> more work -> strain
*Strain -> discomfort/pain -> stop reading & rest
-> academic/work issues
*Light 'charges' scars, making them completely prevalent
in each eye (much like toy glow in the dark stars)
*More light (intensity, frequency, duration)
-> less/no compensation -> harder work
*Bright flashes (e.g. cameras) are worse short term
(minutes to hours)
*Long exposure to bright light is worse longer term
(hours to days)
*Left eye scar is more central, blind spot worse
Right eye got worse
*Was stable since original scarring until July, 2008
*Similar symptoms as 1994
*Scar is now bigger/more central in right eye
*Blind spots overlap more = less compensation
= more loss of vision
*Still getting used to new spot - seeing flashes
*Stable now - could get worse again whenever
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| My Retinas (8-19-08) |
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My eyes are still an issue, but they haven't specifically bugged me much lately. I do have to take breaks from messing around on the computer and from watching TV, but the wooziness usually gets to me before my eyes do. I have to move my eyes/head around a bit to see what I'm looking at, and that motion gets me woozy. My eyes are worse in winter with the cold and lack of moisture. The eye stuff is completely unrelated to the tumor stuff--a separate problem.
The scars had been pretty stable since right after they originally flared up. My right eye got a little worse a couple of summers ago. It was always in the back of my mind that they could get worse, but I suppose I'd become complacent and didn't think too much about that until they did. I wondered if this was it, if I'd completely lose my sight this time. The episode didn't last long and stabilized in the time it took me to get seen by the ophthalmologist. They don't know much more now than they did when I was 15.
Though I'm used to my limitations, it's still scary thinking about the possibility of losing my sight completely. Try to walk down the street with your eyes closed--do not peek--and feel how frightening that is. I do it every once in a while to prepare myself if my condition gets worse. It isn’t easy. The blind spots and impaired vision are always with me. Very often I'll gaze at the alarm clock and think that I forgot to turn it on, but then I get a better angle and realize that the light was just obstructed by the scarring. I'll freak out that I didn't hit the timer button on the VCR (yes, I still use VCRs), but then I'll observe that I just couldn't see that, too. People have to get fairly close to me in order for me to see their faces. Those that I know well are easier to recognize by their gaits and body and clothes. It's hard to read signs in public, or to see the scoreboard at games. Reading things posted on TV is difficult.
I appreciate sight more. I could sit all day and look at the clouds and watch the sun rise and set. I like to see leaves blowing in the trees and falling to the ground. Rain falling is beautiful. Nature is amazing. In most ways, physical beauty isn’t as important nor as impressive, though still admired, only from a new perspective. I love smiles, especially when directed at me, especially when unexpected. Uniqueness is appreciated.
Halloween isn't my favorite holiday. It never was, really. I always found it odd that we were told to stay away from strangers but on one night a year, we could ask them for candy. Being poor, I never had a good costume, either. Being diagnosed with a serious eye condition on that date sealed the deal. I'll still eat the candy, though :). I don't get as depressed as I used to on Halloween. The last couple years, I didn't think about it being an anniversary until after the fact. It'll get me a little this year, I think. It's been half my life...and counting.
My eye stuff has been a big part of the riff between my mom and me. First, I had to argue with her, literally scream and yell, to get her to take me to the doctor. "What? Do you want me to take you to the hospital?" she asked. I guess me saying, "I can't see! I need to go to the hospital!" wasn't clear enough the first thousand times. She still doesn't think she did anything wrong there. It probably wouldn't have saved any of my sight, but still, I WAS FUCKING GOING BLIND!!!! And then she'd make no accommodations whatsoever for me at home. I'd complain, nicely at first, about the light and she'd tell me to wear my hat or glasses. I shouldn't have to wear a hat and sunglasses INSIDE MY OWN HOUSE, especially when it would be very easy just to use alternate lighting. It's bad enough that I have to wear that stuff whenever I'm out of the house, but at home? And she wondered why I spent so much time in my room. 1) I didn't have to wear extra stuff to see, and 2) I didn't have to be around her. This kind of ridiculousness and uncaring has extended to dealing with the tumor stuff, too, but that's for another time.
Wow...now it's been slightly more than half my life I've dealt with this. I've had this longer than I haven't. It'll never go away barring a major medical breakthrough. And it's crazy that something so serious and that dominated so much of my life is now playing second fiddle to something else that's also very rare and even more severe. Even though the wooziness and tumor stuff dictate so much of what I can and can't do, whenever I get too happy or too content, all I have to do is close one eye and look directly at something. It's instantly humbling literally seeing that limitation.
If/when I get better from the tumor and the wooziness, I'll still have my eyes to deal with. Any work I would potentially do would be at the mercy of my eyes. It's been so long that they've been an active problem, it'll take me awhile to re-figure all of that out again. It will still be difficult to get things done on time. Quality will have to be sacrificed just to finish many tasks. I'll still have days when I can't do anything productive. I'll still be handicapped. And I'll still have to worry about my eyes getting worse...without warning...again...
It's been rough and hard and sad and so fucking frustrating. I've always tried to be respectful and caring and empathetic and appreciative, but dealing this has forced me to be so. When you can't do something, when it's physically impossible, when there is no way around it, it's hard not to be humbled. I don't know that I needed humbling. I only accept my limitations as much as I have to. It's still hard to be patient through it all, but I've learned to let go some. Being more aware of how precious and beautiful life and nature can be is nice. I guess that's a silver lining. I would much rather have just had an epiphany: hey, wow, isn't that something?! It is what it is and I'm doing what I do.
Thanks for reading...I'll see you later,
-B
P.S.
Ask me questions, anything, anonymously if you wish at: http://www.formspring.me/visorbrent
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