Nystagmus

My whole life I’ve been living with an ocular condition called Nystagmus. I don’t expect many people to know much about this condition, but it’s something that’s touched almost every area of my life in varying degrees of severity. Due to the largely invisible nature of the condition it’s easy for me to downplay and forget about how much it has affected my life.

When colleagues, friends of friends or any new person in my life finally notices my eyes, or I’m forced to admit that I can’t see what they are pointing at, I’m presented with the same list of frustrating questions. My hope is that with this piece I can get across everything I can’t in that initial short interaction and avoid the perspiration inducing embarrassment of my eyes and I being the sudden focal point of everyone in the room. I hope to have something I can point to, like “read this and come back to me with any questions”;.

I also hope that this article will serve as a kind of therapy for me. Thinking deeply about the breadth and depth of Nystagmus’ affect on me is something I’ve never really done before and it should feel good to put this stuff on the page.

What is Nystagmus?

Ok, so what is this petty little pain in the prick, Nystagmus, all about?

Nystagmus is a condition of involuntary (or voluntary, in rare cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. Due to the involuntary movement of the eye, it has been called “dancing eyes”.

In short, your eyes move very quickly from side to side, or up and down (depending on the type). making it very difficult or impossible to focus on anything. It also makes it extremely difficult to see detail in anything that isn’t right in front of you or to see objects at a distance.

There are five main types of Nystagmus and you can read about them Here. However, I’m going to zero in on the only type I have any experience of, which is Congenital Nystagmus.

Congenital Nystagmus is present at birth, meaning I have no other frame of reference for vision, I’ve always seen this way and have never known anything else.

Does that mean that everything is moving?

Not really. This one is hard to explain. When I was five or six and the optician was trying to explain this to me, I asked her. “How come I can’t see my own eyes moving in the mirror and everything isn’t moving around for me?” She said that my brain had adapted to make it seem as though nothing is moving.

I don’t think this is quite right and maybe she was just trying to explain it to a confused wee boy. But what I think is happening is that everything is moving, it’s just that I’ve never seen what it looks like for things to be still..

Mate, just wear glasses or get laser eye surgery

Thanks a lot, guy! I didn’t think of that.

Needless to say, these treatments won’t do anything to help Nystagmus sufferers. The issue isn’t with light focussing on the retina at a sub optimal position, but the movement in the eye making focussing impossible.

What’s very annoying in my case is that if my eyes were to stop moving tomorrow I’d have near perfect vision.

Currently Nystagmus is widely regarded as incurable with some anecdotal reports of experimental treatment working in a small number of cases.

Can you see this? Or this?

Don’t. Please just… fucking don’t.

A favourite activity of most people who find out I have trouble seeing is to hold things up or point at them and ask if I can see them or read them, to get a real idea of just how bad my vision is. This fucking sucks, I don’t want to play this game.

So what about driving?

To even get in the car on your driving test in the UK you need to be able to read a registration plate form 20.5 meters away. Unfortunately for me this is just out of range. Often when looking at my eye test results, opticians would say “you’re borderline, you might be able to see it on the day”. But there are a number of other factors that can make my vision worse. Stress, anxiety and tiredness can all stoke the movement and make my vision even worse. Any time I’ve tried to measure the distance and see if I can make anything out, I can barely make out a single letter or number.

So yes, this was probably the hardest thing for me to get over. I was told from a very young age that I’d never be able to drive and this is just something I’ve needed to put behind me. Which was fine up until I turned seventeen and all my friends started to pass their driving tests and I saw the freedom and the new life that this afforded them.

Why are you screwing your eyes up?

I can sometimes get a little relief and focus on things I’m struggling with if I screw my eyes up slightly. This is something that I’m very rarely aware that I’m even doing but I still get mocked for it regularly.

When I started my first job at KFC in the murky depths of Gallowhill, Paisley, when I was sixteen, the first thing I was trained on was the til. This was a big touch screen with lots of little different shaped squares and rectangles on it containing the name of the product or some text showing a price or action. The colours were often set by the manager so hellish combinations of yellow text on a white background or red text on a purple background were not uncommon.

After my second or third day I was pulled into the office and told to “stop screwing your eyes up, it looks stupid, get some glasses or something”. To avoid embarrassment I’d just nod and apologise. You see, the thing is, I do actually have glasses, but there is virtually no improvement to my vision. When my glasses can help me is when I’m starting to get a headache from straining at a screen too long or when my Nystagmus gets so bad that I start to feel dizzy, then my glasses can sometimes help reduce this feeling. However, they don’t actually help me focus any better.

Fast forward five years and I’m working in an up market furniture and interiors shop. The same issue would arise. I’d be looking at the screen, probably pretty closely, trying make sense of some horrific user interface with tiny text and a colour scheme with barely any contrast and I’d hear “ha ha ha, he looks like the mole in the hole” from my manager (whatever the fuck that was meant to mean). This would be followed by a roar of laughter from the other three or four staff members. By this time I was a bit older and more confident and asked if they thought this was acceptable. “Would you be making fun of someone who couldn’t hear, or who couldn’t walk?” I asked. At this point I was told to stop being so sensitive. Not quite old or confident enough I started to ask myself “am I being too sensitive, is this something I need to just accept?”.

It’s taken me 18 years in the workplace to finally be able to say, in a room of people “I can’t see that, can you zoom in” or “can you read that out please”.

Didn’t you get any help at school or university?

Zero, zilch, a big fat fucking donut.

The closest thing I got to assistance was when I told my mum and dad that I couldn’t see the board form where I was sitting and they told my teacher at a parents night. My teacher reluctantly moved my seat closer to the black board. Which was actually great, I could finally see how the sums were to be done and I could actually read the sentences. But the reason for my move was quickly forgotten and during a seat reshuffle I was moved away and again I couldn’t make out a thing on the board. Now, to say I was shy in early primary school would be a gigantic understatement. I couldn’t drum up the confidence to even say to my mum and dad again, so I’d improvise. I’d make excuses to get up and walk near the board and memorise what I could. I’d pretend I needed to go to the toilet and on the way back walk slowly past the board, quickly scanning the scratched out information. I’d get told to sit down quite often “back to your seat and get on with your work”. A cool trick I figured out was that if I turned my head sideways I could see the board a lot better, this was due to the horizontal movement of my eyes. Of course, I only had to do this a few times before my classmates pointed out how stupid it was and would literally point and laugh.

When the whole class were learning to tell the time, the teacher would sit out in front of the class with a big square board that had a clock face and hands on it. Of course I couldn’t make any of the numbers out and couldn’t really see the hands. So I’d sit back quietly, hope to remain undetected and avoid any embarrassing questions. It would be three years later that I would finally teach myself how to tell the time.

Art School and University were much easier in that there were fewer occasions when I had to see something far away. Most things were practical based learning, ext books or computer based, so I had a much easier time of it. But there were still occasions where I couldn’t get a seat close enough to the front during lectures, or there would be a white board session, or the questions for the test were projected on to the board, the same fear would take over me, the fear of standing out, looking silly.

If I was starting my education again tomorrow, I’d have a whole suite of tools, resources, help and specialist tuition at my disposal to give me the same chance as everyone else in the class.

How can you be a designer when you have trouble seeing things?

A valid question and this is something that has caused me problems at different jobs in the past. To answer this I’ll need to give you a round up of my career history so far.

I started working as web designer back in the 2006, the good old days when a web designer had to be able to design and build not only the front end of a website but the backend and database stuff too. I’ve always preferred the fluid nature of digital work to that of print. In digital work, you can easily fix mistakes by editing some code and if something goes live that isn’t right, its generally no big deal to go and fix it. You see with layout stuff in an application like Sketch, Adobe Photoshop or Adobe Illustrator, I can easily mistype things and not notice the typo, i can sometimes miss alignment issues in the layout and not realise. All this stuff goes away when I’m designing in the browser. I get visual feedback that there’s a typo (red squiggly line), I can run linting and validation tests on my code and catch any missed closing tags, there’s colour coding on how the code is structured giving me instant feedback if I’ve done something wrong, I align things with maths and don’t rely purely on my eyes to do this.

So with this workflow and skillset, I was starting my career very successfully, getting a job immediately after graduating, then moving to a small but talented agency working for big clients, working purely digitally. I’d do some general mock ups of designs and painstakingly pour over them to make sure I’d left no typos or visual mistakes in there before sending to the client. I’d get sign off on these and then I could go to my happy place, the code, and design the rest of the app or experience in the browser. Let’s be clear, some mistakes would make it through, but I had a client services team who were very understanding and would catch them and ask me to fix them before they were sent. The understanding was that I could do my job very well, but sometimes there would be little things like this I’d need their help with.

Fast forward a few years and my job had started to change. I was now working at another agency but web / digital designers were largely no longer expected to build what they designed. I was working in a team where the entire application would be designed, inside and out, error states, hover states, the works, all in a visual prototype i.e no code at all. This wasn’t great for me as I’d have to check every single screen, sometimes hundreds of them, visually for errors, typos and alignment issues. I can’t quite explain the effort it takes me to check a single page for errors. I constantly have to refocus, take my eyes off the page for a few seconds for a rest, move close to the screen, move further from the screen and I’d have to do this over and over and over on a single screen to get it right. Add to this the ridiculous speed at which you have to churn out work at a design agency and it’s a recipe for disaster. I realised that this workflow and the agency model in general wasn’t for me anymore.

I didn’t exactly leave this workplace on good terms, but this turned out to be a great reset for me. I was forced to look for a job in design that wasn’t tied to this dated way of working, with high fidelity visual prototypes being the main deliverable I was responsible for. During my last few years working at agencies I was starting to realise that it was either completely naive, dishonest or just plain stupid to think you could design an application and it’s features perfectly first time, ship it and forget about it, with little to no follow up or aftercare. Believe it or not, this is what agencies were doing back then and some still do it now. I had been thinking about working on a product or in-house for some time as I’d seen many of my peers make this move and seemed to be happier as a result. I quickly had a few job offers and I accepted the one that really stood out to me.

Skip to today and I’m Lead User Experience Designer for a multi-billion pound company. I’m responsible for a team of talented User Experience Designers and I lead the visual and experience design of digital products that have millions of visitors a month. The reason that the small visual details aren’t an issue now is that a general concept or an example of a feature is shown in a small prototype then all of the filling in of the gaps is done in the code, as a team of designers and developers, mobbing together. This takes me to my happy place again, where I was when I first started my career as a designer. This doesn’t require impeccable vision to do this job. What’s more important is that I can think critically and objectively, I can ask the right questions at the right time and I’m able to care more about how something works and how someone feels when they use it than only caring about whether the prototype is pixel perfect or not.

This is quite a long winded way of saying that you can absolutely be a designer and have reasonably severe Nystagmus. I’ve seen conference talks delivered by web designers who are completely blind. Visual design is only one small part of the design thinking process.

Why did you blank me on the street?

Well, I probably didn’t.

This is a common one for me and it probably happens more than I care to think about. If we know each other and I walked by you without saying anything, here’s what probably happened. Out of the context of a work, home, family or friend situation, I have nothing else to go on to recognise you other than your face. For me to recognise faces they have to be pretty close. So, when you’re walking towards me, you’ve probably clocked it’s me from twenty or thirty feet away. Chances are I could be looking at you too from this far away and you might be like “why’s this dick looking past me”?

Ok, this Nystagmus shit sounds like a bit of a ball ache. What else does it fuck with?

Travel

Just navigating an airport or train station can be a hellish nightmare. Forget about reading timetables in those little display things at train or bus stations . If I need to get a bus, it’s passed me before I can even read where it’s going. Things are much better now than they used to be for me though. I can use a lot of apps to give me train and bus times, to give me airport departure gates and flight information.

Relationships

Quite often my friends or family can forget how limited my vision is and expect more from me than I’m capable of. This could be in the car as a navigator and not being able to read road signs or not be able to reliably identify which roundabout exit to take in time. People can expect you to see as they do and can often get frustrated with you when you can’t. This is not their fault but it can cause tensions and frustration.

Socialising

I don’t play computer games with anyone, ever. I used to play my Sega Master System, Sega Megadrive and later Sony Playstation 1 with my sisters, but that was it. At my friend’s houses when we’d all be playing, I’d need to sit two feet away from the screen and even then, as the games got more advanced and the graphics got faster it became impossible for my eyes to follow the action, so I tapped out and just became a spectator.

Hobbies

I love stargazing but I can only see the brightest of the stars and I need a totally dark sky to see even these. Subtitles in movies are a nightmare for me. I’m forever pausing the TV at home to get up and read sub titles whenever they appear or asking my wife to read them out to me. Reading can become impossible, which when you’re really enjoying a book can be incredibly frustrating. Things like the kindle and iPad really helped me be able to read for longer, but I still reach a point where my eyes will give up and I’ll need to come back later.

What about the good stuff?

Ok, so I’m aware this might sound largely negative, but this is just my experience and I wanted to document my frustrations and the challenges I face most days. However, in spite of my condition, I still regard myself as a very lucky person and I’m happy with my achievements so far. While a lot of the negatives I’ve mentioned are a real pain in the willy, none of them have stopped me living a full and independent life.

Nystagmus aside, I still managed to get straight A grades for every single module over two years at college and score 99% in the final exam, higher than anyone else on the course. For the same course I won the end of year prize for best performing student both years. My work was shown to each new intake of students as exemplary work.

In University I achieved first class honours (1:1), again the only student to achieve this in the entire course. I was awarded the court medal at the end of the course too. I was contacted numerous times from new starts to the course about my honours project, which they were showing as an example of exemplary work.

I’ve been featured in two of my industry’s flagship magazines. I am now in a design leadership role. Because I have to commute everywhere I am able to get through quite a few books and audio books. I have to do a lot of walking, which keeps me reasonably fit, without trying. Sometimes not looking too closely at the details, if in a design review, helps me comment on and feedback on things other people will miss, overall feeling, tone, balance and the message.

So what exactly is it you’re saying?

I suppose my main message here to anyone else suffering from Nystagmus, who’s not sure what they are going to do with themselves., who’s not sure what their life will be like not being able to drive. This isn’t the be all and end all and this doesn’t have to define you and your life. Let’s not kid ourselves, you’re not going to be a pilot or a or an Olympian archer, but most things are still within your reach, even if you have to pivot your career goals slightly. When I’m feeling sorry for myself I try and regain a little perspective…

• Can I walk?
• Can I hear?
• Can I read and write?
• Am I worrying about where my next meal is coming from?
• Do I have clean drinking water coming out of special magic pipes in my fucking house?

Then I’m more fortunate than 99% of the rest of the world.