The Nystagmus Tag
Dec. 14th, 2017 09:07 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
cosmolinguistI saw somebody retweet this blog post, which has some interesting questions about nystagmus. Nystagmus is one of the eye conditions I have, it's the one that makes my eyes jump back and forth so even before I had glasses or pointless and counterproductive accommodations in grade school, people could tell just from looking at me that there's something wrong with my eyes.
No one ever explained anything about this, or my other eye conditions to me. I only know what they're called because I was a nerdy kid who remembered long words I overheard or saw written down once. So my explanations of it aren't going to be any better than you can get on Wikipedia, but I can certainly talk about what it's like to have it.
1. Are you the only one in your family to have nystagmus?
Yes but I think this question is asking if there's a genetic component to my eye conditions, and I can't know if anyone I'm biologically related to has it, because I'm adopted and had next to no information about my birth parents and none at all about any other family members.
2. How has your nystagmus affected you throughout your life so far?
Since it's the thing that's both obvious and unavoidable about my eye coinditions, it got me bullied for as long as I can remember. In that Stockholm syndrome way, I was relieved when some kids thought was interesting or "cool" just because that made such a change, but this was just a different kind of unwanted attention and it started out with the same kinds of questions that the bullying started with so I was on high alert. I didn't even realize how exhausting this was at the time. It was just my "normal."
For someone relatively sighted and brought up constantly encouraged to fit in and be normal, nystagmus was always the traitor giving me away. I hated it for that.
It's also a barometer for other people of how I'm doing: if I'm tired or if I'm coming down with a cold or whatever, it was obvious to my parents and now it is to Andrew because my eyes move more quickly. Since I don't know they're moving (I have congenital nystagmus so my brain always compensates (this is apparently not the case for people who acquire nystagmus later in life) ), I again have felt at times like my eyes are against me, telling other people things I'm not always necessarily aware of or things I wish I could be better at hiding.
As for how it actually affects my vision, nystagmus seems to be the reason my sight is so variable. I will talk about having a "good eye day" or "my eyes aren't working today," and this is what I mean. A bad day means my eyes are sore, it's harder to focus, and I get headaches. A good day means I can read a bit smaller print or make out detail a bit further away than I tend to expect -- sometimes I even surprise myself slightly with that!
I call them "days" but a good or bad period doesn't necessarily last all day and can last for longer than a day. And many actual calendar days don't feel particularly good or bad. The bad ones are more noticeable, of course, because I've arranged my life such that I never depend on and rarely ask my vision to be at the top of its game. Maybe a "good day" is less obvious or not used to its fill advantage, but that's totally worth it if it makes the bad days less likely or less bad.
The variations aren't huge (in visual acuity, I mean; obviously they're huge in terms of pain and functionality) but they can make enough difference that once I got new glasses whose prescription was too strong prescription because I must've been tested for them on a "bad day." (Nystagmus is apparently worsened by stress so it's amazing I've ever gotten any decent prescriptions, considering how traumatic I found eye doctors, especially as a kid.) I never adjusted to them and eventually had to have a new eye test and new glasses -- must've cost my poor parents so much more money!
3. What are you registered as – partially sighted, severely sight impaired, blind, etc?
I'm registered severely sight impaired, meaning I have the same legal status as someone who can't see anything at all. Which feels really weird to me? I was shocked when the registration came through and said that. Andrew was totally unsurprised -- "you really can't see very well at all, love" -- but honestly I can see better than any other visually impaired person I know. And things like that register (which is just about visual acuity and visual field) don't take into account the variability which is actually so disabling to me: not being able to not being able to rely on something being possible today just because I did it yesterday, or being able to do something like take a test where I need a certain amount of "good eyes"-ness at a certain time and for a certain length of time which are totally outside my control.
People in the UK aren't registered blind (or partially sighted) any more: they're registered severely sight impaired or sight impaired, respectively. While I am officially "severely sight impaired" I call myself partially sighted because that seems more accurate and gives people who meet me a better idea of what I'm dealing with and what they can expect from me.
4. Do you have any other eye conditions with your nystagmus?
Nystagmus is usually present with other conditions, it's what the RNIB calls "a problem with the pathways that connect the eyes to the parts of the brain that analyse vision. These parts of the brain deal with eye movement." Those pathways from the eyes to the brain are the optic nerves, and mine didn't form properly. My eye condition is called optic nerve hypoplasia, which means the optic nerves are too small/thin. So my eyes themselves aren't damaged or faulty even though that's the experience of a lot of people with sight loss. The signals my eyes try to send to my brain just aren't able to get there like they should.
I couldn't see at all when I was born, and it's my understanding that this is because my brain was basically going "what even is this shit I'm getting from you, eyeballs" and took a while to figure out how to make any sense of it at all. But I've had this level of sight since I was about a year old (or maybe less, my parents are vague on this) so I don't remember not being able to see, and I have never been able to see any better than I do now.
For all my mom's constant fretting (she also thinks I'm more likely to get other eye problems, when my risk of something like glaucoma is no different than anybody else of my demographic), my eye condition is really stable. I feel quite lucky in this, because I've never known any different and I don't have to worry about it getting any worse (except my eyes will get worse with age like anybody's), which again is not an experience shared by lots of people with sight loss.
5. Do you have any visual aids to help you with your condition?
Magnifying doesn't work super-well for me, though this is something I spent my childhood failing to convince people of. My eye condition has basically the same effect on me as being incredibly short-sighted so people expect me to have coke-bottle glasses or carry a magnifying glass around but...
I mean yeah, it's sorta easier to read bigger print, but I find it doesn't make me able to read for longer or to get less tired or anything. Large print has its own tiring things that go along with it, like how often you have to flip pages and how hard it is to keep a thought in your head as you're reading if you can't occasionally look back a few lines to remind yourself.
I do need/benefit from larger text on the computer but a lot of basic websites for things like Gmail or social media are increasingly terrible at rendering properly when you bump up the font size. Andrew had a problem trying to make a payment from online banking recently where when he complained he got told "oh yeah, the all-important 'confirm payment' [or whatever it was] button disappears if your font size is increased." They know about it and they don't care. He found it ironic that he had this problem while trying to make a payment for my DSA, for something that I get because I'm disabled in ways that make it a lot easier for him to do the online banking in the first place.
The vast majority of the "vision aids" I use aren't things people would normally think of as such (most I only recently realized are vision aids myself). Like, Andrew is my biggest vision aid. He grabs my hand if we're walking in the dark, asks if I'm okay when there are stairs, patiently gives me precise directions towards the toilets if we're out somewhere that I don't know where they are, tells me things I'll miss when we watch a TV show, reads information he thinks I'll find interesting off displays in museums. He's known me for long enough that he has at least as good an idea as I do of what kind of help I'm likely to need (he knows he doesn't need to say "there are stairs" when we get to the stairs but he says "You okay, love?" knowing that I will know he means "on the stairs" and that sometimes I'll say yes and sometimes want a hand). Really granular, well-tailored help like that is such a luxury.
Anyway! My pocketwatch on a necklace chain is a vision aid. My Audible subscription is a huge vision aid. Tidiness is, too! Not walking on stuff on the floor or unexpectedly swiping something off the kitchen counter when I reach for the faucet would help a lot. Keeping things in the same place so I don't have to look for them, I can just know where they are. Following people when they're walking so I can see where/how they go and thus if there's puddles to step around, any curbs, things like that.
People keep wanting to give me gadgets and things that talk, but these kind of "life hacks" aid my vision a lot more. I am realizing I have a lot of them, but since they all developed subconsciously throughout my life I didn't even notice a lot of the until I started paying attention a few years ago.
6. Do you have any advice for parents of children with nystagmus?
Watch out for the bullying.
Be patient with the variability: the kid really will be able to do stuff one day that they can't the next. So it's not necessarily laziness or avoidance (though of course any kid can have those too! I'm still not good at telling the difference between them in myself).
I think my headaches and whatnot were viewed with a lot of suspicion when I was in school. I don't blame my parents for that because they can't have been given much information about my eye conditions beyond the medical basics. They were still years away from internet access (and they're not people to go looking up things like this on the internet anyway) and my condition was always framed by doctors in a sciencey, numbersy kind of way: it was about my body's deficiency and the interesting medical example I provided, not about the impact it had on my day-to-day life. My mom took me to separate specialists because she was worried about all the headaches at one point, and none of those fuckers went "huh, maybe it's this problem with visual processing she's had all her life and now she's in middle school and high school the demands are getting a lot greater. I think they just blamed the headaches on puberty. You know, girls, hormones, that whole weird thing.
But I can save my bitterness about how poorly the medical establishment served me for another day, because this is already getting long! My point is that parents can definitely prepare themselves better now, which I think is great.
And I do hope they listen to their kids better than I was listened to. A lot of my traumatic associations with eye doctors of all kinds are that no one ever explained things to me, no one asked me questions. For some reason when I was about 12 I was taken to a different hospital once, and there they realized a mistake had been made on my records, which had apparently always said I see better out of my left eye than my right. They did tests to find out it was the other way around, but I could've told anybody who'd asked in the intervening however-many years it'd been since I mastered the difference between left and right! I didn't know it was wrong on my records either, of course, because nobody ever showed me or talked to me about them.
I know kids can't understand everything but I think parents should still listen to them as much as possible, trust them, and try to find age-appropriate explanations for their conditions and treatment.
7. Describe your vision in 3 words.
Tiring, but appreciated!
8. What help did you get in school/work?
I don't think I had any useful help in grade school (except my second-grade teacher sometimes giving me a written copy of what she'd put on the blackboard), just a lot of stuff foisted on me that I didn't want: writing with pens instead of pencils because people who didn't ask me found it easier. Got all my textbooks on tape in middle school, back when that needed a special player and everything, and literally never touched them. My first time at university, another kid was paid to photocopy their notes for me in a couple of my classes. When I mentioned that to the disability advisor I saw at Manchester, the look she gave is probably what people mean by withering.
And I never had any help at all in any sort of job, except my hospital job occasionally letting me go home early if my vision was really badly affected.
Now I'm back in uni, things couldn't be more different. I'm getting a bunch of proprietary software for things like screen reading and magnification now that I'm a student. My new laptop should be here on Friday, the very last day of the semester. I haven't used it before because the technology is just catching up with the variability and non-standard nature of my access needs and because if you have to pay for it yourself it's bloody expensive, but I've tested this stuff out and some of it's really exciting. More updates about this soon, no doubt.
I'm also getting a camera that can OCR whole pages of text in a couple of seconds and read it out to me, a little handheld thing that lets me zoom in on and take pictures of things, and a bunch of other software like Dragon.
I had extra time for my Arabic exam yesterday, and I needed it. My teacher photocopied the test onto A3 paper for me too (bigger text helps me a lot more in Arabic, I don't know why, but my teacher thinks this makes sense because she says when she was learning Hebrew she felt dyslexic and benefited from magnification to overcome it). I get an extra week for all my deadlines and that's been really helpful too. I felt like a fraud when the disability advisor put these things in my support plan like just as a matter of course (the I'm not that disabled! voice in the back of my head will never shut up) but I've been so grateful for them.
The one essay I have left to do this semester is on something I don't understand very well and I missed the seminar that talked most about it so I was stressing today. But it's something Andrew is interested in too so I showed him the readings I need to get citations from. There were four or them and I'd spent hours (over a few weeks!) reading them all; he took like ten minutes. Admittedly he's especially good at skim-reading and extracting information quickly from what he reads, but also it made me feel a little more like I deserved the extra time I get!
No one ever explained anything about this, or my other eye conditions to me. I only know what they're called because I was a nerdy kid who remembered long words I overheard or saw written down once. So my explanations of it aren't going to be any better than you can get on Wikipedia, but I can certainly talk about what it's like to have it.
1. Are you the only one in your family to have nystagmus?
Yes but I think this question is asking if there's a genetic component to my eye conditions, and I can't know if anyone I'm biologically related to has it, because I'm adopted and had next to no information about my birth parents and none at all about any other family members.
2. How has your nystagmus affected you throughout your life so far?
Since it's the thing that's both obvious and unavoidable about my eye coinditions, it got me bullied for as long as I can remember. In that Stockholm syndrome way, I was relieved when some kids thought was interesting or "cool" just because that made such a change, but this was just a different kind of unwanted attention and it started out with the same kinds of questions that the bullying started with so I was on high alert. I didn't even realize how exhausting this was at the time. It was just my "normal."
For someone relatively sighted and brought up constantly encouraged to fit in and be normal, nystagmus was always the traitor giving me away. I hated it for that.
It's also a barometer for other people of how I'm doing: if I'm tired or if I'm coming down with a cold or whatever, it was obvious to my parents and now it is to Andrew because my eyes move more quickly. Since I don't know they're moving (I have congenital nystagmus so my brain always compensates (this is apparently not the case for people who acquire nystagmus later in life) ), I again have felt at times like my eyes are against me, telling other people things I'm not always necessarily aware of or things I wish I could be better at hiding.
As for how it actually affects my vision, nystagmus seems to be the reason my sight is so variable. I will talk about having a "good eye day" or "my eyes aren't working today," and this is what I mean. A bad day means my eyes are sore, it's harder to focus, and I get headaches. A good day means I can read a bit smaller print or make out detail a bit further away than I tend to expect -- sometimes I even surprise myself slightly with that!
I call them "days" but a good or bad period doesn't necessarily last all day and can last for longer than a day. And many actual calendar days don't feel particularly good or bad. The bad ones are more noticeable, of course, because I've arranged my life such that I never depend on and rarely ask my vision to be at the top of its game. Maybe a "good day" is less obvious or not used to its fill advantage, but that's totally worth it if it makes the bad days less likely or less bad.
The variations aren't huge (in visual acuity, I mean; obviously they're huge in terms of pain and functionality) but they can make enough difference that once I got new glasses whose prescription was too strong prescription because I must've been tested for them on a "bad day." (Nystagmus is apparently worsened by stress so it's amazing I've ever gotten any decent prescriptions, considering how traumatic I found eye doctors, especially as a kid.) I never adjusted to them and eventually had to have a new eye test and new glasses -- must've cost my poor parents so much more money!
3. What are you registered as – partially sighted, severely sight impaired, blind, etc?
I'm registered severely sight impaired, meaning I have the same legal status as someone who can't see anything at all. Which feels really weird to me? I was shocked when the registration came through and said that. Andrew was totally unsurprised -- "you really can't see very well at all, love" -- but honestly I can see better than any other visually impaired person I know. And things like that register (which is just about visual acuity and visual field) don't take into account the variability which is actually so disabling to me: not being able to not being able to rely on something being possible today just because I did it yesterday, or being able to do something like take a test where I need a certain amount of "good eyes"-ness at a certain time and for a certain length of time which are totally outside my control.
People in the UK aren't registered blind (or partially sighted) any more: they're registered severely sight impaired or sight impaired, respectively. While I am officially "severely sight impaired" I call myself partially sighted because that seems more accurate and gives people who meet me a better idea of what I'm dealing with and what they can expect from me.
4. Do you have any other eye conditions with your nystagmus?
Nystagmus is usually present with other conditions, it's what the RNIB calls "a problem with the pathways that connect the eyes to the parts of the brain that analyse vision. These parts of the brain deal with eye movement." Those pathways from the eyes to the brain are the optic nerves, and mine didn't form properly. My eye condition is called optic nerve hypoplasia, which means the optic nerves are too small/thin. So my eyes themselves aren't damaged or faulty even though that's the experience of a lot of people with sight loss. The signals my eyes try to send to my brain just aren't able to get there like they should.
I couldn't see at all when I was born, and it's my understanding that this is because my brain was basically going "what even is this shit I'm getting from you, eyeballs" and took a while to figure out how to make any sense of it at all. But I've had this level of sight since I was about a year old (or maybe less, my parents are vague on this) so I don't remember not being able to see, and I have never been able to see any better than I do now.
For all my mom's constant fretting (she also thinks I'm more likely to get other eye problems, when my risk of something like glaucoma is no different than anybody else of my demographic), my eye condition is really stable. I feel quite lucky in this, because I've never known any different and I don't have to worry about it getting any worse (except my eyes will get worse with age like anybody's), which again is not an experience shared by lots of people with sight loss.
5. Do you have any visual aids to help you with your condition?
Magnifying doesn't work super-well for me, though this is something I spent my childhood failing to convince people of. My eye condition has basically the same effect on me as being incredibly short-sighted so people expect me to have coke-bottle glasses or carry a magnifying glass around but...
I mean yeah, it's sorta easier to read bigger print, but I find it doesn't make me able to read for longer or to get less tired or anything. Large print has its own tiring things that go along with it, like how often you have to flip pages and how hard it is to keep a thought in your head as you're reading if you can't occasionally look back a few lines to remind yourself.
I do need/benefit from larger text on the computer but a lot of basic websites for things like Gmail or social media are increasingly terrible at rendering properly when you bump up the font size. Andrew had a problem trying to make a payment from online banking recently where when he complained he got told "oh yeah, the all-important 'confirm payment' [or whatever it was] button disappears if your font size is increased." They know about it and they don't care. He found it ironic that he had this problem while trying to make a payment for my DSA, for something that I get because I'm disabled in ways that make it a lot easier for him to do the online banking in the first place.
The vast majority of the "vision aids" I use aren't things people would normally think of as such (most I only recently realized are vision aids myself). Like, Andrew is my biggest vision aid. He grabs my hand if we're walking in the dark, asks if I'm okay when there are stairs, patiently gives me precise directions towards the toilets if we're out somewhere that I don't know where they are, tells me things I'll miss when we watch a TV show, reads information he thinks I'll find interesting off displays in museums. He's known me for long enough that he has at least as good an idea as I do of what kind of help I'm likely to need (he knows he doesn't need to say "there are stairs" when we get to the stairs but he says "You okay, love?" knowing that I will know he means "on the stairs" and that sometimes I'll say yes and sometimes want a hand). Really granular, well-tailored help like that is such a luxury.
Anyway! My pocketwatch on a necklace chain is a vision aid. My Audible subscription is a huge vision aid. Tidiness is, too! Not walking on stuff on the floor or unexpectedly swiping something off the kitchen counter when I reach for the faucet would help a lot. Keeping things in the same place so I don't have to look for them, I can just know where they are. Following people when they're walking so I can see where/how they go and thus if there's puddles to step around, any curbs, things like that.
People keep wanting to give me gadgets and things that talk, but these kind of "life hacks" aid my vision a lot more. I am realizing I have a lot of them, but since they all developed subconsciously throughout my life I didn't even notice a lot of the until I started paying attention a few years ago.
6. Do you have any advice for parents of children with nystagmus?
Watch out for the bullying.
Be patient with the variability: the kid really will be able to do stuff one day that they can't the next. So it's not necessarily laziness or avoidance (though of course any kid can have those too! I'm still not good at telling the difference between them in myself).
I think my headaches and whatnot were viewed with a lot of suspicion when I was in school. I don't blame my parents for that because they can't have been given much information about my eye conditions beyond the medical basics. They were still years away from internet access (and they're not people to go looking up things like this on the internet anyway) and my condition was always framed by doctors in a sciencey, numbersy kind of way: it was about my body's deficiency and the interesting medical example I provided, not about the impact it had on my day-to-day life. My mom took me to separate specialists because she was worried about all the headaches at one point, and none of those fuckers went "huh, maybe it's this problem with visual processing she's had all her life and now she's in middle school and high school the demands are getting a lot greater. I think they just blamed the headaches on puberty. You know, girls, hormones, that whole weird thing.
But I can save my bitterness about how poorly the medical establishment served me for another day, because this is already getting long! My point is that parents can definitely prepare themselves better now, which I think is great.
And I do hope they listen to their kids better than I was listened to. A lot of my traumatic associations with eye doctors of all kinds are that no one ever explained things to me, no one asked me questions. For some reason when I was about 12 I was taken to a different hospital once, and there they realized a mistake had been made on my records, which had apparently always said I see better out of my left eye than my right. They did tests to find out it was the other way around, but I could've told anybody who'd asked in the intervening however-many years it'd been since I mastered the difference between left and right! I didn't know it was wrong on my records either, of course, because nobody ever showed me or talked to me about them.
I know kids can't understand everything but I think parents should still listen to them as much as possible, trust them, and try to find age-appropriate explanations for their conditions and treatment.
7. Describe your vision in 3 words.
Tiring, but appreciated!
8. What help did you get in school/work?
I don't think I had any useful help in grade school (except my second-grade teacher sometimes giving me a written copy of what she'd put on the blackboard), just a lot of stuff foisted on me that I didn't want: writing with pens instead of pencils because people who didn't ask me found it easier. Got all my textbooks on tape in middle school, back when that needed a special player and everything, and literally never touched them. My first time at university, another kid was paid to photocopy their notes for me in a couple of my classes. When I mentioned that to the disability advisor I saw at Manchester, the look she gave is probably what people mean by withering.
And I never had any help at all in any sort of job, except my hospital job occasionally letting me go home early if my vision was really badly affected.
Now I'm back in uni, things couldn't be more different. I'm getting a bunch of proprietary software for things like screen reading and magnification now that I'm a student. My new laptop should be here on Friday, the very last day of the semester. I haven't used it before because the technology is just catching up with the variability and non-standard nature of my access needs and because if you have to pay for it yourself it's bloody expensive, but I've tested this stuff out and some of it's really exciting. More updates about this soon, no doubt.
I'm also getting a camera that can OCR whole pages of text in a couple of seconds and read it out to me, a little handheld thing that lets me zoom in on and take pictures of things, and a bunch of other software like Dragon.
I had extra time for my Arabic exam yesterday, and I needed it. My teacher photocopied the test onto A3 paper for me too (bigger text helps me a lot more in Arabic, I don't know why, but my teacher thinks this makes sense because she says when she was learning Hebrew she felt dyslexic and benefited from magnification to overcome it). I get an extra week for all my deadlines and that's been really helpful too. I felt like a fraud when the disability advisor put these things in my support plan like just as a matter of course (the I'm not that disabled! voice in the back of my head will never shut up) but I've been so grateful for them.
The one essay I have left to do this semester is on something I don't understand very well and I missed the seminar that talked most about it so I was stressing today. But it's something Andrew is interested in too so I showed him the readings I need to get citations from. There were four or them and I'd spent hours (over a few weeks!) reading them all; he took like ten minutes. Admittedly he's especially good at skim-reading and extracting information quickly from what he reads, but also it made me feel a little more like I deserved the extra time I get!
(no subject)
Date: 2017-12-16 06:23 pm (UTC)The thing that boggles me the most is the huge gap between the medical and social models. We criticize the medical model for not recognizing how society disables us, but it's also crap because the medicos don't provide us with helpful info. The business of living, coping, getting on with it is the most important, and mostly that seems to happen peer to peer.
Although now I hope that kids are getting some of that support when they're young. It's infuriating that anyone can grow up with the message, "Well, you're almost able-bodied, so we can ignore your need for accommodation." But it certainly has happened to many people I know in my generation (the younger baby boomers).
Are you eligible for access to alternate formats? (Audio, computer text?)