I am working, honest

[cosmolinguist]

Nystagmus looks much freakier on House than...

Well, I was going to say "than it does on me," but I don't see it on me (if I look in a mirror, my eyes look steady). And I don't know anyone other than me who has it, so for all I know it always looks freaky.

In which case, my friends are even cooler than I thought for putting up with me! And I already know they're pretty cool.

Comments

[andrewhickey.info]

Most of the time your eyes look normal. When you're very tired, or stressed, or generally emotional, they jump about a lot but not in a particularly odd or unpleasant looking way -- just like someone looking round at a lot of fast-moving things, or like a baby who can't control its eyes properly. It also happens a lot less now than it used to.

[cosmolinguist]

I think it probably does look freakier on House than it does on me, it was just a thought that amused me because I'm used to thinking House is full of freaky stuff that I know nothing about and this time I was like "...oh wait!" Of course in this case it was a sudden and ominous symptom and not something someone had their whole life.

This episode also features someone from the Mayo Clinic being Wrong, so it's a lot like my life really! ;)

[cosmolinguist]

It also happens a lot less now than it used to.

I was hearing this even when I was a teenager, which I think is pretty interesting. (And, now that I think of it, makes it even more galling that my mom was drunkenly telling people my eyes have gotten so much worse, poor little me.) It wasn't supposed to be like that, I was always told when I was younger. But then since they never knew why I could see at all, I don't know why I should be surprised they were wrong about this. :)

[andrewhickey.info]

I suspect your mum was probably mistaking normal eye-rolling for nystagmus...

[cosmolinguist]

Haha.

Well, I don't think she meant that particularly got worse, just my vision generally. I have no clue where she got such an idea from though, so can only assume it's her own pessimistic worldview.

Interestingly, on the wikipedia page for the thing this is secondary to, it says "The majority of children affected experience improvement in vision during the first few years of life, though the reason for this occurrence is unknown." I didn't know this improvement was so common! And here I've been told all my life how exceptional I am. ;)

[andrewhickey.info]

I think what's exceptional is not that you improved, but that you improved from completely blind. I get the impression that *that* is exceptional...

[quirkytizzy]

I didn't know what that was until I googled it. But we all have our physical strange things. Does it affect your vision?

[cosmolinguist]

I honestly don't know how much it affects my vision because it's secondary to the thing that really affects my vision, which is optic nerve hypoplasia (which means my optic nerves didn't form properly so don't send very good signals to my brain).

As I had it explained to me, nystagmus is due to the muscles that move and focus the eyeball being weak...so the eye jumps around because there's nothing keeping it still. I think this does contribute to my eyes feeling tired and sore sometimes, which means I can't always read/use a computer/etc very well or happily, and I can never look at a computer/TV screen for long (like any more than an hour) without my eyes hurting. And as Andrew says, it's noticeably worse if I'm otherwise tired or sick or in any way worn-down.

So I guess in that way it affects my vision, but I don't think it by itself affects the visual acuity or field or the things people usually think of as vision.

[quirkytizzy]

That's got to be maddening, especially for someone who keeps an online journal. But I'm glad you've found ways to work with it - AND found out what your limits are when it comes to your eyesight. That's really important, since straining your eyes can lead to all kinds of painful headaches and out of sort-ness.

[cosmolinguist]

It's one reason I write most of my stuff on my phone these days actually: yeah it's slower but I don't really mind and it's more than worth it because for some reason the phone screen doesn't hurt my eyes like computer screens do.

And for all it sometimes seems like I'm on the computer all the time, it's in a lot of little chunks rather than a few big ones, which helps too.

Knowing my limits is a big deal for me because I was raised basically to fit in, to go to normal school and do normal stuff and be normal. In high school I'd get nasty headaches from too much reading or computers and people thought I was just slacking off because I'd done almost "too good" a job pretending that I was no different from anybody else. It's still hard for me to say "hey can you tell me what that sign says?" or "I can't play cards right now" (it's frustrating because in theory I'm all in favor of board/card games, and both my family and my in-laws are big on them, but recently I've learned that I find new ones really challenging and often not very accessible, and just how much pressure I've felt to go along and not wreck it for everyone, but this has meant a ton of stress for me!) or whatever, but I'm a lot better at owning up to my limits than I was when I was younger.

[quirkytizzy]

That sounds like it would make learning how to ask for help really difficult...but espeially beautiful now that you're in a safe place TO ask people for help.

[diffrentcolours]

If you'd find it interesting, I'm sure I could video your eyes and play it back for you.

I expect I found it a bit freaky when we first met, in the way that new things are, but I can't say I remember it bothering me much at the time and it certainly doesn't feel like something I have to "put up with" with any degree of effort.

[haggis.livejournal.com]

This is pretty much what I came to say. I noticed it when we first met but it's never been anything that caused me effort or bother and now I don't really notice it.

[cosmolinguist]

I was possibly being a bit facetious there, but this is good to know anyway, ta :)

[softfruit.livejournal.com]

I knew before you came in for the interview that you had some kind of sight issues, and while his eyesight is worse David Blunkett has the same eye condition and has been on the telly a lot, much moreso back at the time we met.

So though it was a little disconcerting (cos with most people you judge engagement partly through eye contact) it wasn't *that* peculiar. Probably a bit like the second trans friend you make - "ah this thing is like that thing but a bit different" but not "oh this is alien wtf".

[cosmolinguist]

Ooh, I didn't know it was the same thing he had.

[softfruit.livejournal.com]

I thought it looked the same and a quick google suggests so.

[cosmolinguist]

It's a secondary condition with other stuff (that's what it is for me; it isn't what makes me blind itself) so I suppose it isn't surprising, but as I say I wasn't aware of anyone I could point to who had it. But it sounds from the blasé reaction of my British friends that might be something to do with the very small sample size of people I was around for most of my life.

[jojomojo.livejournal.com]

Never noticed it.
(I have a lazy eye myself, which is fun for freaking people out with. Only works with my glasses off though)

[ludy]

I'd know several people with nystagmas before I met you. Including a counsellor who had an obviously well practised spiel about why they wouldn't always be doing sustained eye-contact when we were working together - which as an autistic spectrum person who finds eye-contact unpleasant I was quite pleased about! (we ended up speculating about a special needs counsellor/client matching service)

I have wondered about how you get security pass/passport etc photos that meet the very strict eye position criteria? (it annoys me that I have to take my prescription tinted glasses off for them and have a flash fired at me which leaves me with a visual stress headache)

[cosmolinguist]

I don't know if that's because I'm foreign, I think it's just because mine's old enough that it wasn't a rule yet then.

[cosmolinguist]

Andrew and I had the most hilarious conversation about eye contact the other day, where he asked me what it was and doubted my answer and ended up saying "I'm going to wikipedia it!" We really were about the two worst people to be talking about this, a partially-sighted person who looks particularly like she's never looking at what she is actually looking at anyway, and an autistic spectrum person. This supposedly fundamental, basic thing about people and neither of us gets it at all.

I've never had trouble getting my eyes to look right for ID photos...sometimes my head, because my vision is so much better in one eye than the other that I basically do all my seeing out of one eye, so I'm often looking off to one side even when I think I'm looking right at the camera.

[barakta]

I noticed your nystagmus cos I do notice things like that and knew what it was (they can't induce it in me like for "normal" people cos I have my own interesting eye movement things).

The brain does all kinds of cool image stabilisation cognitively so you won't be able to see your own eyes move in a mirror cos of that.

You brain may also be doing cool stuff to try to stabilise the image you see (visual acuity etc depending) and I suspect you'll get more or less success with that depending on how tired you are. One thing studes with nystagmus often have is a lot of tiredness/fatigue and sometimes balance issues. I only discovered in the last year or so that when I move my head from left to right suddenly that it shouldn't do a streaking like badly encoded video effect - "normal" people's eyes and brains will stabilise that image so it's smooth or they don't see movement...

I hate passports cos I have a very narrow range where my eyes both look right, cos I can;t move either of them outwards, so if I look to anywhere not centre my eyes look distinctly odd. I think sometimes that disturbs people who notice it and don't like it whereas I think a lot more people now recognise it's probably a random disability thing and just shrug like Softfruit did in a "Ah slight weirdness, oh probably a bit like thing x, move on" kinda way...

Regarding passports they should have systems for people who can't meet the rules, usually a doctor note or something saying "Person has a disability which means they can't do XYZ" to shut the passport office up.

[cosmolinguist]

You brain may also be doing cool stuff to try to stabilise the image you see (visual acuity etc depending) and I suspect you'll get more or less success with that depending on how tired you are.

Oh yes, it does it very well; things I look at don't jump back and forth and I can forget I even have this for days or weeks at a time unless someone mentions it or I find myself in the rare and specific circumstances where I actually can see stuff wiggle around (things like digital clocks in dark rooms, and those scrolling LED displays and some kinds of strobe light).

Regarding passports they should have systems for people who can't meet the rules, usually a doctor note or something saying "Person has a disability which means they can't do XYZ" to shut the passport office up.

I can imagine how much more awesome that'd be when renewing a foreign passport too; they probably wouldn't even care about a note from my doctor. Oh well, I've got another year or two before I have to worry about this, luckily!