[30Days]: On My Eyes
Well, this post starts out in an interesting manner: jennyclarinet asked me to talk about being legally blind.
TW, if it is needed, for discussion about blindness, eyesight, and related disability.
Here's the background: my eyesight is very, very bad. I've had glasses since I was three years old. My eyes, now, at 28, are reaching the point where they're no longer 100% correctable. Since I've had glasses for so long, I barely even remember the discussions that went on when I was 3, but I do know I am functionally blind without my glasses. I am "severely sight impaired." And, somewhere in those 28 years, I was told this was "legally blind."
So I went to Wikipedia and looked up the borderline for being legally blind, to talk about it a little bit, and I am now confused, because - while I've been told that I qualify on the ground that my eyesight is so poor, I do not qualify according to the line drawn on Wikipedia because my eyes are (mostly) correctable. So, hilariously, which is right? Is it the natural state of my eyes which counts, or the state of my eyes after correction...? Which doctor told me I was legally blind, and was that a state definition, or a doctor somehow projecting on a young patient? Was it right at the time? Is Wikipedia correct in this case? Do I actually qualify as legally blind?
Obviously, these are all questions to ask my NEW optometrist; I am not qualified to answer them. But it made me think a little, and I want to throw these thoughts out there. It made me think, because I don't want to look like that person appropriating labels and intruding on legitimate space for the fellow disabled. I don't want to lie. I am not looking for attention, or for sympathy.
So who gets to decide if I am disabled? And does it matter?
I feel disabled. Am I? Does that count?
Hilarious Edit: I think
thewhitemage has clarified my confusion for me: the "legal" definition is what you need to get benefits, which is why correctability matters; to qualify in the medical category, correctability is irrelevant. So... perhaps everything is correct here!
Oncoming rant still stands though. *g*
My eyes, right now, are the worst of anyone I've ever met. I am the second-worst patient my ophthalmologist has ever seen, and the only person to "beat me" in prescription had a detached retina.
That is the category of eyesight I fall into, people with detached retinas.
The one time in my life I was trying to save money and went to Lenscrafters, they called me "the girl with the -11s" in the back like it was a joke, and I spent 9 months fighting with them until I realized they were literally unable to make me a pair of glasses which would work. I need specialty materials and lenses fitted individually, by a professional.
My eyes right now are anywhere from 80%-95% correctable with glasses, and anywhere from 50%-85% with contact lenses. (your vision also changes with your blood sugar, did you know? so any given day I can see better or worse with my contacts in, it is awesome, trust me.)
Does this count? Do I have "the right" to complain about it?
Because look: legally blind or not, whether or not I fall just above or just below a line drawn in the sand, I consider this a disability. There is not a day in my life I am allowed to forget, ever, that I carry this. There is not a single day where I don't have to pay extra attention while driving, because my peripherals aren't 100% clear; or I have to pay extra attention in the shower, because the floor is just a giant blur and oops, I dropped my razor and literally cannot see it; or I've been reminded that in semi-light conditions like rain, my eyes aren't 100%, and I just missed my turn because I could not read the road sign in time; or even that I wake up in the middle of the night and the world is black and I don't even know where my alarm clock is let alone what time it is.
I do not talk about it in this light because I am fortunate; it can be corrected to the point where I can function. I can hold a job; I can use a computer; I can live life as a 'sighted' person. I do not want to steal the thunder of other people who are visually impaired, even though I have never met anyone whose eyes are worse than mine, because I know that I am lucky to have the correctability that I do.
So: do I get to say that I am disabled? I don't receive any special money for this; I have to pay for my glasses through my own insurance and out of my own pocket. Do I get to claim that I am sight-impaired? Or am I robbing the truly blind of sympathy and attention if I do so? Can I define myself in this way, in a way I feel is the correct definition for my life, in a way doctors have defined it for me? Who gets to say whether or not it affects me?
Because, as me, I say it does.
But what does that mean?
Just things to think about.
I'm not going to put my full prescription online, but I will paraphrase it here: you know how you can buy reading glasses in stores, -1, -1.5, -2.5? My script is -11.
I can't take the vision chart test - the one with the letters and the big E - because without my glasses, I can't see the chart. I can't even see the wall the chart is on. The test that I have taken before is called the CF test, where CF stands for "Count Fingers." I can count fingers 1 foot away from my face if the light is okay, 2 feet from my face if the light is good and the hand is against, say, a white background. In poor lighting, or against a background color similar to the hand in question, I cannot count fingers 2 feet away and sometimes can't even do it 1 foot away. (Just for fun, try this at home. That is what my eyes are like.) This means my eyesight is something like 20/4000 - 20/8000, although at that end of the scale the Snellen numbers become pretty meaningless.
Like I said above: I have had glasses since I was 3 years old.
My parents actually had to get special dispensation for me to take all kinds of eye tests as a 3-year-old, because you cannot take the normal eye test because they don't expect a 3-year-old to be able to read yet. I could, and did, and took - and failed - all of the eye exams they gave me. I am not sure if I actually remember the day that I got glasses or if I have created this image in my own head, but I swear I can recall driving home from the doctor's office and marveling that trees had leaves.
I got contacts in 7th grade, and I still remember being amazed that I could see out of my peripheral vision! Is this what it's like? It didn't even matter that I had to stick things on my eyeballs, seriously, I could see in all directions and it was amazing. I wore contacts regularly for years and years.
I had to stop wearing them when I started working at Bridgestone. This is a lab environment and wearing contacts is a safety violation, because if chemicals splash into your eyes they can become lodged behind the lenses and do permanent damage to your eyes before you can wash it out. So I've become a day-to-day glasses wearer.
And that's okay, because my eyes have deteriorated to the point where I have trouble obtaining 100% vision with contact lenses.
My script is already very, very high, and the number of lines that offer contacts at so high of a prescription are already limited. But I'm developing astigmatism, too. Right now, there are only two lines that even OFFER a contact lens at the prescription I need and with the curvature my astigmatism demands, and one doesn't work for me. So I only have one single option for contacts. If my script continues to get worse or my astigmatism continues to grow, I'm not sure I will have options.
Which worries me, yes.
I worry that I'm going to get to the point where my eyes aren't correctable. I am already teetering on that point as it is. What happens when I am no longer 100% even with my glasses? What do I do?
I've thought about laser eye surgery before. I am a prime candidate - they've been pushing me towards it since I turned 21, because basically "Your eyes cannot get much worse." My argument is, yes they can: I do not want to be truly blind. The laser surgery scares me. But am I going to have an alternative?
If I got it now, even if it couldn't correct my eyes to full 20/20 - even if I was "only" a -6 in prescription, that's a lot easier to deal with. You can function without your glasses; you can walk to the bathroom at night. Lenses wouldn't cost me full hundreds of dollars to get the high-density high-corrective materials I need. Contacts would work again. I'd have more lines open, more options.
If my astigmatism gets worse, I may no longer qualify for laser surgery anyway. What happens then? My eyes continue to get worse until I can't wear contacts at all, until glasses stop working?
It terrifies me, because I have this -- strange sympathy; I know what it's like to not be able to see and yet I am terribly afraid of going completely functionally blind, because I am on the edges of this country and that's hard enough; I don't want to think about it because it's too much like what happens to me at night and it's like this sympathetic fear because I think I can almost imagine it and yet I have no idea what it would be like and yet I do and -- that's what it's like, in my head, every time I think about it. It makes me want to cry.
And yet I am mostly correctable; how do I have any right to complain when there are people out there who never got to see?
And yet, it's like -- Jeff made fun of my driving skills because I would run over potholes, at night, instead swerving around them to avoid them, and I could never explain to him that I couldn't see the potholes.
It kind of goes along with my strange relationship with my own body; it doesn't work right, and I am not sure I love that. And it goes along with my own struggles with and desires for medical "legitimacy", as if I'm not allowed to claim something unless it's an actual diagnosed medical problem? As if having this awful eyesight isn't enough, it has to be labeled "Legally Blind" or I feel like I should just STFU about it?
Anyway, yup.
I have pretty much decided that I am going in early next year to be evaluated for laser eye surgery. So anyone who has any thoughts on that, they're much appreciated.
This is part of my 30 Days of Posting meme - feel free to check out the schedule of posting! My month is full, but if any of the posts make you want to ask for something else, go ahead and leave a comment anyway! DW || LJ
This entry was originally posted at http://seventhe.dreamwidth.org/38110.html, which has
comments. Comment there (with OpenID) or here, it's all good.
TW, if it is needed, for discussion about blindness, eyesight, and related disability.
Here's the background: my eyesight is very, very bad. I've had glasses since I was three years old. My eyes, now, at 28, are reaching the point where they're no longer 100% correctable. Since I've had glasses for so long, I barely even remember the discussions that went on when I was 3, but I do know I am functionally blind without my glasses. I am "severely sight impaired." And, somewhere in those 28 years, I was told this was "legally blind."
So I went to Wikipedia and looked up the borderline for being legally blind, to talk about it a little bit, and I am now confused, because - while I've been told that I qualify on the ground that my eyesight is so poor, I do not qualify according to the line drawn on Wikipedia because my eyes are (mostly) correctable. So, hilariously, which is right? Is it the natural state of my eyes which counts, or the state of my eyes after correction...? Which doctor told me I was legally blind, and was that a state definition, or a doctor somehow projecting on a young patient? Was it right at the time? Is Wikipedia correct in this case? Do I actually qualify as legally blind?
Obviously, these are all questions to ask my NEW optometrist; I am not qualified to answer them. But it made me think a little, and I want to throw these thoughts out there. It made me think, because I don't want to look like that person appropriating labels and intruding on legitimate space for the fellow disabled. I don't want to lie. I am not looking for attention, or for sympathy.
So who gets to decide if I am disabled? And does it matter?
I feel disabled. Am I? Does that count?
Hilarious Edit: I think
thewhitemage has clarified my confusion for me: the "legal" definition is what you need to get benefits, which is why correctability matters; to qualify in the medical category, correctability is irrelevant. So... perhaps everything is correct here!
Oncoming rant still stands though. *g*
My eyes, right now, are the worst of anyone I've ever met. I am the second-worst patient my ophthalmologist has ever seen, and the only person to "beat me" in prescription had a detached retina.
That is the category of eyesight I fall into, people with detached retinas.
The one time in my life I was trying to save money and went to Lenscrafters, they called me "the girl with the -11s" in the back like it was a joke, and I spent 9 months fighting with them until I realized they were literally unable to make me a pair of glasses which would work. I need specialty materials and lenses fitted individually, by a professional.
My eyes right now are anywhere from 80%-95% correctable with glasses, and anywhere from 50%-85% with contact lenses. (your vision also changes with your blood sugar, did you know? so any given day I can see better or worse with my contacts in, it is awesome, trust me.)
Does this count? Do I have "the right" to complain about it?
Because look: legally blind or not, whether or not I fall just above or just below a line drawn in the sand, I consider this a disability. There is not a day in my life I am allowed to forget, ever, that I carry this. There is not a single day where I don't have to pay extra attention while driving, because my peripherals aren't 100% clear; or I have to pay extra attention in the shower, because the floor is just a giant blur and oops, I dropped my razor and literally cannot see it; or I've been reminded that in semi-light conditions like rain, my eyes aren't 100%, and I just missed my turn because I could not read the road sign in time; or even that I wake up in the middle of the night and the world is black and I don't even know where my alarm clock is let alone what time it is.
I do not talk about it in this light because I am fortunate; it can be corrected to the point where I can function. I can hold a job; I can use a computer; I can live life as a 'sighted' person. I do not want to steal the thunder of other people who are visually impaired, even though I have never met anyone whose eyes are worse than mine, because I know that I am lucky to have the correctability that I do.
So: do I get to say that I am disabled? I don't receive any special money for this; I have to pay for my glasses through my own insurance and out of my own pocket. Do I get to claim that I am sight-impaired? Or am I robbing the truly blind of sympathy and attention if I do so? Can I define myself in this way, in a way I feel is the correct definition for my life, in a way doctors have defined it for me? Who gets to say whether or not it affects me?
Because, as me, I say it does.
But what does that mean?
Just things to think about.
I'm not going to put my full prescription online, but I will paraphrase it here: you know how you can buy reading glasses in stores, -1, -1.5, -2.5? My script is -11.
I can't take the vision chart test - the one with the letters and the big E - because without my glasses, I can't see the chart. I can't even see the wall the chart is on. The test that I have taken before is called the CF test, where CF stands for "Count Fingers." I can count fingers 1 foot away from my face if the light is okay, 2 feet from my face if the light is good and the hand is against, say, a white background. In poor lighting, or against a background color similar to the hand in question, I cannot count fingers 2 feet away and sometimes can't even do it 1 foot away. (Just for fun, try this at home. That is what my eyes are like.) This means my eyesight is something like 20/4000 - 20/8000, although at that end of the scale the Snellen numbers become pretty meaningless.
Like I said above: I have had glasses since I was 3 years old.
My parents actually had to get special dispensation for me to take all kinds of eye tests as a 3-year-old, because you cannot take the normal eye test because they don't expect a 3-year-old to be able to read yet. I could, and did, and took - and failed - all of the eye exams they gave me. I am not sure if I actually remember the day that I got glasses or if I have created this image in my own head, but I swear I can recall driving home from the doctor's office and marveling that trees had leaves.
I got contacts in 7th grade, and I still remember being amazed that I could see out of my peripheral vision! Is this what it's like? It didn't even matter that I had to stick things on my eyeballs, seriously, I could see in all directions and it was amazing. I wore contacts regularly for years and years.
I had to stop wearing them when I started working at Bridgestone. This is a lab environment and wearing contacts is a safety violation, because if chemicals splash into your eyes they can become lodged behind the lenses and do permanent damage to your eyes before you can wash it out. So I've become a day-to-day glasses wearer.
And that's okay, because my eyes have deteriorated to the point where I have trouble obtaining 100% vision with contact lenses.
My script is already very, very high, and the number of lines that offer contacts at so high of a prescription are already limited. But I'm developing astigmatism, too. Right now, there are only two lines that even OFFER a contact lens at the prescription I need and with the curvature my astigmatism demands, and one doesn't work for me. So I only have one single option for contacts. If my script continues to get worse or my astigmatism continues to grow, I'm not sure I will have options.
Which worries me, yes.
I worry that I'm going to get to the point where my eyes aren't correctable. I am already teetering on that point as it is. What happens when I am no longer 100% even with my glasses? What do I do?
I've thought about laser eye surgery before. I am a prime candidate - they've been pushing me towards it since I turned 21, because basically "Your eyes cannot get much worse." My argument is, yes they can: I do not want to be truly blind. The laser surgery scares me. But am I going to have an alternative?
If I got it now, even if it couldn't correct my eyes to full 20/20 - even if I was "only" a -6 in prescription, that's a lot easier to deal with. You can function without your glasses; you can walk to the bathroom at night. Lenses wouldn't cost me full hundreds of dollars to get the high-density high-corrective materials I need. Contacts would work again. I'd have more lines open, more options.
If my astigmatism gets worse, I may no longer qualify for laser surgery anyway. What happens then? My eyes continue to get worse until I can't wear contacts at all, until glasses stop working?
It terrifies me, because I have this -- strange sympathy; I know what it's like to not be able to see and yet I am terribly afraid of going completely functionally blind, because I am on the edges of this country and that's hard enough; I don't want to think about it because it's too much like what happens to me at night and it's like this sympathetic fear because I think I can almost imagine it and yet I have no idea what it would be like and yet I do and -- that's what it's like, in my head, every time I think about it. It makes me want to cry.
And yet I am mostly correctable; how do I have any right to complain when there are people out there who never got to see?
And yet, it's like -- Jeff made fun of my driving skills because I would run over potholes, at night, instead swerving around them to avoid them, and I could never explain to him that I couldn't see the potholes.
It kind of goes along with my strange relationship with my own body; it doesn't work right, and I am not sure I love that. And it goes along with my own struggles with and desires for medical "legitimacy", as if I'm not allowed to claim something unless it's an actual diagnosed medical problem? As if having this awful eyesight isn't enough, it has to be labeled "Legally Blind" or I feel like I should just STFU about it?
Anyway, yup.
I have pretty much decided that I am going in early next year to be evaluated for laser eye surgery. So anyone who has any thoughts on that, they're much appreciated.
This is part of my 30 Days of Posting meme - feel free to check out the schedule of posting! My month is full, but if any of the posts make you want to ask for something else, go ahead and leave a comment anyway! DW || LJ
This entry was originally posted at http://seventhe.dreamwidth.org/38110.html, which has
comments. Comment there (with OpenID) or here, it's all good.