Living With Nystagmus (Video Transcript)


Living With Nystagmus

Description

In this video I describe my experience living with the eye condition Nystagmus, which means I have involuntary movements of the eyes. My brain compensates for it as best it can, so my world is reasonably still. But it does make it more difficult to focus on things. To read text, it has to be close to me or I have to enlarge it. And for things in the distance, I have to use a pocket telescope (a monocular) to see writing and other detail. It hasn’t stopped me living my life though, so I’m happy.

This clip is adapted from my blog post about Nystagmus. I also have a related condition called Aniridia, which I’ve created a separate video and blog post about. Both videos are in support of the RNIB’s How I See Project. There are more videos about my disability and my experiences living with it in my disability playlist.

You can get more professional information and support about Nystagmus at these links:

Nystagmus Network UK Website

Nystagmus Network UK Youtube

American Nystagmus Network Website

American Nystagmus Network Youtube

Aniridia & Nystagmus Playlist

And finally, I’m on social media at these links:

My Blog

My Twitter

Thanks for watching! 🙂

Transcript

[Video shows a close-up of my eye, with the heading “Nystagmus”. My eye is clearly shaking due to the condition.]

Hi everybody. Following on from my video about Aniridia, I now want to talk about another eye condition I have – Nystagmus. As I said in my Aniridia video, I’ve had my visual impairments all my life, meaning I’ve never known any different. So I’m used to them, I’ve adapted to them, and they haven’t stopped me living my life and being happy and successful. So these videos aren’t intended to be negative, I just want to describe the effects these conditions have on me.

Nystagmus basically means I have involuntary movements of the eyes. I can move my eyes in any direction I wish, but they won’t ever stay on a fixed point. There are regular little movements all the time that I have absolutely no control over.

[Video shows a close-up of a boat, filmed from a high window of the World Trade Center. Because it’s zoomed in so far, my shaky camerawork is very obvious, and that shakiness which represents what nystagmus can be like. As the image zooms out to show the view over New York, the image is much more stable, though still a little shaky, which represents my eyes at their best.]

However, this doesn’t mean that my vision moves all the time. The world I see is reasonably still, because my brain compensates for it as best it can. There can still be a tiny bit of movement, and it becomes much more pronounced if I’m tired or stressed, but the majority of the time it’s not too bad.

Nevertheless, because my eyes refuse to stay on a fixed point, it is more difficult to focus on things. Having Aniridia compounds this issue as well, but it’s a key effect of Nystagmus on its own.

[Video shows me wearing my anti-glare sunglasses, turning my head to show how they block off light from the side and above.] 

And before you ask – no, glasses don’t help. Glasses can’t stop my eyes from moving or compensate for it, so they make no real difference to me. I have tried glasses in the past, with various different types of lenses, and none of them have helped. And the same goes for contact lenses, I don’t wear those either. And I manage fine without those things, so I don’t mind not having them.

[Video shows a photo of me at a restaurant with friends, looking very closely at my iPhone. Then a photo shows me holding my large print notes close to me while giving a Best Man speech. And then there is a screenshot from my blog, showing an extract of my nystagmus post, with black text on a white background.]

So when I want to read something, I have to get my face close to it, or use a magnifier, or have it in large print, or if it’s on a computer, I’ll use the zoom feature to make it larger. And I’ll change the colour scheme as well – as I said in my Aniridia video, I like to have text that’s white on a black background, which is the opposite to what other people tend to have. And if I feel my eyes have jumped while I’m reading, I may go over a sentence again, just to make sure I haven’t missed anything important.

[Video shows me reading my TV guide magazine (the Radio Times), without any aids like magnifiers, so I have to hold it very close to my face.]

I may also tilt my head, or occasionally shake or move my head, to help me see things a bit better. I do this when I’m finding what’s called my ‘null point’ – the direction in which my focus is best. A lot of people with nystagmus do this, and everyone’s ‘null point’ will be in a slightly different position. And it’s something we do automatically out of habit. It doesn’t give me a major improvement in my vision, but it’s just the position that feels best for reading with.

[Video shows a few of Big Ben from the other side of the River Thames, the camera zooming in to get a clear view of the time. Then there is a video showing the view from a car as we drive down a motorway in America. The cars and signs ahead are visible, but so blurred that any detail is impossible to read.]

And seeing detail on anything at a distance is practically impossible – such as signs, or departure boards at train stations, or Powerpoint presentations, or the score boards at bowling alleys, or anything like that. This clip from an old VHS holiday video illustrates the problem very well. The driver of the car I’m in will be able to see the registration number of the car in front of us, and the writing on the signs. But I can’t make out that level of detail. I can see where the registration plate is on the car ahead of us, but the number is all blurred. Likewise, I can see where the signs are ahead of us, and I can tell that they’re green with white parts on them. But I can’t make out what the writing actually says.

[Video shows me using my monocular, turning it to adjust the focus.]

So I can’t drive for that reason. But when I’m out walking, I am able to get around the distance problem by using a monocular. A monocular is basically a little telescope, which I use to read things that are far away. And I can turn it in the middle to adjust the focus, depending on just how far away something is. So it’s really, really handy and I use it a great deal, especially when travelling around. Or if I’m standing behind someone and they’re showing me something on their computer screen, then it comes in handy then too. So it has a lot of uses.

[Video shows the view from a train window in Spain, as buildings pass by quickly outside.]

But Nystagmus doesn’t only affect reading. Overall it takes a little bit longer to process anything that I’m seeing. Especially if things are moving quickly, because I won’t able to focus on it and react fast enough. For instance, if someone throws me something to catch, then chances are I’ll miss it. Or if a cyclist zooms towards me – especially on the pavement where I don’t expect to see them, but also when I’m about to cross the road – then I’m purely reliant on their own reaction times, as I won’t be able to move quick enough. I’m lucky I’ve never been hit by a bike yet, as there have been plenty of close shaves.

Or if there are subtitles or captions on TV shows that go by quickly, or fleeting sign gags in cartoons like The Simpsons or Family Guy, then I can easily miss those too. If I’m watching such a programme on DVD or Blu-ray, or on a catch-up service like iPlayer, then occasionally I’ll rewind it a few seconds, and freeze-frame it if necessary, to check out something I’ve missed.

[Video shows a busy street in the Times Square area of New York at night, with lots of people and cars passing us as we walk along.]

My eye conditions can also make it a bit more challenging to interact with other people. For instance, it may cause me to ignore people without meaning to. If someone quickly walks past me in the street or the corridor and says hello, a lot of the time I’ll have absolutely no idea who it was, unless they have a really distinctive voice, or they have a body shape that I’m able to recognise in a split second. I may not even realise they were saying hello to me, if there are other people around and they haven’t said my name. Similarly, I can’t see through car windows. So if someone drives past and beeps at me, I’ll have no idea who it is, and I may not even realise they were beeping at me to start with, unless their car is easy to recognise, or they shout out of the window or something like that.

So if you walk or drive past me and try to get my attention, and I don’t answer, it’s only because I didn’t have time to figure out who you were. Half the time I’ll work it out when I’ve walked past you a few seconds later, and I’ll think “Oh yeah, it was that person!” But by then it’s too late of course. So I was probably just concentrating on where I was going, so don’t think I ignored you. It’s better to actually stop me and say hello if you want to have a chat.

Trying to find people can be hard as well. Picking someone out in a crowd is really difficult, for example. Or if I’m in a bar or walking down the street, and someone calls me to come over to them, I’ll end up turning around trying to pinpoint where their voice is coming from. Unless they call out to confirm I’m heading in the right direction, or actually come over and get me, it can be hard for me to figure out exactly where they are

And when I am actually talking to someone, I’m not always good at making out facial expressions to know how they’re feeling. I can see when they’re smiling, and obvious things like that of course, but I can’t see the more subtle expressions in their eyes and things like that.

[Video shows a close-up of my eyes staring straight at the camera, and they’re always shaking a little bit.]

So the only way to have a good chance of really understanding how someone’s feeling would be to deliberately stare at them, but that would just make me look weird. If I try and stare solidly at something or someone straight ahead of me, it just makes my eye movements a bit worse, as my eyes fight me all the way, so they just become a bit more obvious.

So rather than stare, I just make sure I’m facing the person, and look upwards in the general direction of their face, without focusing on it too intently, so I’m being as polite as I can. I’ll focus more on their voice and actions to get the best idea of how they might be feeling. And most of the time it works well enough. I’m pretty good at making friends and talking to people and interacting with people. I might misjudge things occasionally, as any human being does really. But I’ve never had any major problems. It’s just something I have to think about a little bit differently to other people, because I don’t have the advantage of seeing all the signals that other people are giving off, that normal sighted people would notice.

[Video shows more photos of me from the day I was Best Man at my friend’s wedding, focusing on my face.]

It can happen the other way around as well, in that people can misread my facial expressions occasionally. If I’m not looking at someone normally, or if I’m concentrating on looking at something else, then my face – and especially my eyes – might not be fully conveying what I’m thinking. So people can occasionally think I’m angry, upset or tired when I’m really not.

[Video shows more footage of our night walk on the busy streets of New York.]

So there are various little things that Nystagmus can have an impact on. And it can vary throughout the day, as there are many factors that can affect how I see things – like lighting conditions, or glare, or long periods of concentration, or tiredness, or stress, or excitement, and so on.

But most of the time my vision is good enough for me to get through the day without any real hassle. So I don’t find it too frustrating or inhibiting. As I’ve said before, I’ve had these conditions all my life, so I’m used to them. Whereas if someone developed the condition after having had normal sight for many years, it would be much harder to adjust to.

[Video shows screenshots of the following websites.]

So that’s the effect that nystagmus has on me. You can get much more professional information and support about Nystagmus from organisations like Nystagmus Network UK – at nystagmusnetwork.org – and the American Nystagmus Network – at nystagmus.org. Organisations like that can give a lot more detail and advice than I can.

[Video shows my blog address and Twitter name over a blue sky with clouds quickly passing across.]

But I hope you found my little insight interesting, so thank you for watching and listening. Bye!

Author: Glen

Vsually impaired, with Aniridia & Nystagmus. I'm a fan of Doctor Who, classic sitcoms, Queen and 60s-80s rock & pop. I like to blog about my experiences as a disabled person, and about the things I enjoy in general.

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