Living With Nystagmus

Following on from my previous post about Aniridia, I want to use this post to talk about another condition I have – Nystagmus (specifically Congenital Nystagmus, meaning I’ve had it since birth, as I have with Aniridia).

As mentioned in my Aniridia post, I’ve had my visual impairments all my life, so I’m used to them and have adapted to them. They certainly haven’t stopped me living a happy and successful life – and others deal with it very well too, including TV’s Richard Osman. So these posts aren’t intended to be negative. I just want to describe the main effects they have on me.

I’ve also made a video about living with the condition, which may help to explain things further.

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

This does not, however, mean that my vision moves all the time. The world I see is actually reasonably still, because my brain compensates for it as best it can. As far as me and my brain are concerned, what I have is normal sight, because I have no concept of what perfect 20/20 vision is like. There can still be a bit of movement, and it becomes much more noticeable if I’m tired or stressed, but generally it’s not too bad.

Because my eyes refuse to stay on a fixed point, it’s much more difficult to focus on things, and it’s impossible to see anything clearly at a distance. Having Aniridia probably compounds this issue further still, but it’s a key effect of Nystagmus on its own. It means that things have to be very close for me to read them and see detail. The sharper, clearer and bigger something is, the quicker and easier I can see and understand it. But it always requires a little extra time and effort to take in all the detail. And glasses make no difference before you ask, a point I’ll get back to in a moment.

Reading can therefore be very tiring over long periods, because it requires more concentration to take everything in properly. It is easier on a computer, because I can change the colour scheme and zoom in to ease things. But even then I still can’t read anything lengthy without breaking it down into more manageable chunks, to avoid getting eye strain or feeling too tired. I’ll concentrate on other things in between to make sure there’s a bit of variety. I had extra time when doing exams in school, college and university for that reason, which helped a lot. And with these initial long blog posts I’ve been writing, I’ve been taking my time over them, doing a bit at a time until I’m sure I’ve said everything I want to say, without making too many silly mistakes.

The image below is from an old camcorder tape I recorded many years ago, before the days of HD, which happens to demonstrate my vision quite well. I can see where the signs are ahead of me, and that they’re green with white parts on them. But I can’t make out what the writing is. Likewise, I can make out where the registration plate is on the car in front, but I can’t read that either.

To elaborate, there are a few points in particular that are worth noting…

Glasses don’t fix it, because they can’t stop your eyes moving.

It’s the number 1 question I get when I tell people about my eye conditions. And it is an understandable question to an extent – although, to be fair, if glasses did help, I would be wearing them. But the fact is, regardless of what lenses I may use – and I tried loads as a kid to see if they helped, without any success – they make absolutely no difference. My eyes are still moving, so they still can’t focus. So I don’t wear glasses (other than sunglasses), and I don’t wear contact lenses either. I don’t feel a need to, I’m able to manage well enough without those things.

It takes longer to process what I’m seeing, so I’m slower to react.

The more there is going on in front of me, the longer it takes to take in all the detail, working out what’s what and who’s who. Trying to pick out someone in a crowd is very difficult for instance. Or if someone asks me to get something from a desk that’s full of other stuff, it can take a good few moments to actually pick out what I’m looking for, even if it’s right under my nose.

Anything fast moving is also very difficult for me to see properly. For instance, some TV shows and films have subtitles or captions that aren’t on screen for very long, while comedies like The Simpsons and Family Guy often have funny sign gags that appear on screen for fleeting moments. Sometimes I can’t read that stuff quick enough, and there can be other things that happen quickly in TV shows or films that I might miss. So if I’m watching a DVD or Blu-Ray and feel I may have missed an interesting detail in the scene I’ve just watched, I will sometimes rewind a few seconds and pause if necessary, to check it out a second time. I don’t use audio description, because I can see well enough to watch things without it, but there are still bits I miss sometimes.

I also have poor reaction times as well. If someone throws something at me to catch it, it’s more than likely that I won’t. It takes too long to figure out how big the object is and how fast it’s moving in order to respond to it properly. Same goes if a cyclist is zooming down the street towards me – I can’t see them coming, so I won’t know they’re there until the moment they shoot past me, which is far too late to do anything about it. If I were to lose my balance and stumble a bit – another consequence of Nystagmus which does happen occasionally – it could have very serious results. I’ve had a lot of very narrow escapes from bikes in my lifetime – purely down to the cyclists’ reflexes, not mine.

I need to be close to see detail and read things.

If I want to read anything, it needs to be close up. Even stuff that’s in large print still needs to be fairly close to properly focus on it. And when I’m writing, then I need to be close to the paper or have it under a CCTV magnifier. As such, my handwriting isn’t very good. It’s legible, usually, but not particularly tidy.

I can’t see any detail at a distance either. I can make out objects and their basic features, such as their shape and prominent colours it contains, but I can’t read text or see intricate detail from afar.

So if I’m attending a Powerpoint presentation, I can’t see what’s being projected on the screen. And the very first school I ever went to used blackboards, which I couldn’t see. If I’m waiting for a bus, I can’t see the numbers of any that are approaching until they’ve got to the bus stop, by which time it’s too late to flag it down. At train stations and airports I can’t read the departures and arrivals screens that hang from the ceiling. And so on, I could go on forever. Anything that isn’t right in front of me, I can’t read, basically.

It also means I can’t drive, because I can’t read registration plates or signs. I wouldn’t even be able to read stuff on the dashboard without leaning down close to it. I don’t mind not being able to drive though – it saves me a lot of money. Using public transport is fine – not always easy, and I’ll relate one such example in another post soon – but generally I’m happy on buses, trains, etc.

Thankfully I get around many distance problems by using a monocular, which is basically a little telescope. I can turn it in the middle to adjust the focus, depending on how near or far away something is. So I use it a lot, as it’s very handy, especially when travelling around, or if someone’s showing me something on their computer screen at work while I’m standing behind them.

Larger font sizes are easier to read.

Not too large, mind you, but a larger font size does help. Size 18 rather than 12, for instance, is more comfortable on the eyes, because I don’t have to concentrate so much. I can, and sometimes have to, read smaller sizes – 10 or 12 is tolerable in small doses, even if I do have to bring it close to my eyes – but they take some effort, so I prefer not to deal with them for too long at once. I’ll use a hand-held magnifier or an electronic CCTV magnifier to blow things up if there’s something small I need to read for a more lengthy period.

Good contrast between text and background is also important. In my previous post on Aniridia, I described how I like reading things on computers in negative view – white text on a black background. The two colours are opposites, so my eyes can separate them easily. A light colour on a relatively dark background is what I prefer, as lighter background tend to glare more. So it’s very irritating when i see red text on a black background, or yellow on white, things like that, because they are impossible for me to read, even with a magnifier.

To be clear, this is not colour blindness – I don’t mix up red and green or anything like that. It’s the contrast between colours that’s the problem. Text needs to be sufficiently different from it’s background so it stands out nicely.

I can’t easily recognise people or their facial expressions.

This is a consequence of both my slow visual processing and poor distance vision. If I’m walking past someone in the street or a corridor, I often won’t have a clue who it is, even if I’ve seen them coming towards me. I won’t be able to make them out properly at a distance, and I won’t have enough time to look at them when they’re closer, to figure out who they might be. So unless they say hello and I happen to recognise their voice, they’ll just go past me and I’ll be left wondering who it was. Similarly, I can’t see through car windows at all from the outside, unless my nose is pressed right up to them – so if someone’s beeping at me as they pass, I’ll have no clue who it is, and I’ll probably assume they’re tooting at someone else.

There are some people I know well who I can recognise when they’re approaching me, but it’s usually by their body shape or clothes or the way they move. I certainly can’t see their face clearly until they’re next to me. On the other hand, there are other people I also know well, who I don’t always recognise quickly, maybe because there isn’t a significant feature about them that I can pick out. It can cause people to feel like I’m ignoring them sometimes when I’m not.

Additionally, when I am talking to someone, I’m not good at making out facial expressions to know how they’re feeling. The only way to have a good chance of doing that would be to purposefully stare at them, which would just make me look like weird. If I try and stare solidly at something straight ahead of me, it just makes my eye movements worse, as my eyes fight me all the way, even if things look still to me. 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 heavily, so at least I’m being reasonably polite. I go by their voice and actions to get the most idea of how they’re feeling.

It happens the other way around as well, in that people misread my facial expressions sometimes. Because I’m not looking at people ‘normally’, or if I’m concentrating on looking at something, my face might not be fully conveying what I’m thinking. So people can occasionally think I’m angry, upset or tired when I’m not.

Locating people nearby when I hear them is often really hard as well. If I’m in a bar or walking down the street and someone I know is calling out to me, I’ll end up turning around trying to establish where the voice is coming from, at which point the person in question will either call out to confirm when I’m facing in the right direction, or will come over to me to help me.

I have a ‘null’ point – a direction I can look in where my focus is best.

When I’m reading things, I will often tilt my head a bit to the right, just to find the best point of focus, which can look strange to other people. It’s automatic to a large extent, I don’t usually think about doing it. It’s just a habit I have, because it helps. It doesn’t give me a major improvement, but it’s a bit better than some other angles for concentrating on things.

I may also shake or move my head occasionally to help me see things better, which can look like an involuntary tic or reflex to others. That’s another automatic response while I’m trying to focus properly. At the end of the day, I’ll do whatever I need to do with my eyes and head to get the best view, even if I don’t realise I’m doing it.

My vision varies during the day.

A whole myriad of factors can affect how I see things, like lighting conditions, or the light sensitivity associated with my Aniridia, or periods of concentration, tiredness, stress, excitement, etc. Generally speaking my vision is OK, but there can be times that are more frustrating than others, depending on what mood my eyes are in at the time.

I can’t help it. I was born with it and will always have it.

Nystagmus isn’t something I can control. Same goes for Aniridia for that matter. So if I’m looking at you or something else in a funny way, or if I appear to ignore you, don’t be offended or think I’m stupid or upset. It’s just part of who I am.

On the whole I cope very well, and I don’t let most of the little niggles bother me, because I’ve adapted to them and live with them. Using accessibility features on computers, magnifiers for reading things close up, and a monocular for seeing details at a distance, all make life a lot easier. And the people I know are very helpful and understanding as well.

I’ve been fortunate enough to live a happy and successful life without my disability getting in the way. But many others aren’t so lucky, so I’m very thankful things aren’t worse. My sight may deteriorate at some point in the future, but that’s all the more reason to enjoy using the sight I have now and make the best use of it I can.

So I hope you found that interesting, thank you for reading.

If you want more professional information and support about Nystagmus, then I can particularly recommend Nystagmus Network UK, Nystagmus Network USA and the Nystagmus Family Foundation Facebook Group as starting points. Further links are available on my Sight Loss Resources Page.