Nystagmus

I have mentioned before that I have a number of health conditions, there are two conditions most prominent, the first would be my Sarcoidosis which I have documented on my other blog since I was diagnosed in 2017 for the sake of posterity as I believe there aren't many sources online where you can read about other peoples' experiences with the condition.  The second condition is my Nystagmus which I have had since birth.  This post will attempt to explain as best I can what that condition is and how it affects me.

Nystagmus is an involuntary movement of the eye which causes the eye to lose the ability to accurately focus on objects.  This can result in short-sightedness or low vision.  For me personally the movement of my eyes is similar to that of rolling a coin back and forth with your forefinger while balancing it on your thumb.  In other words they 'wobble'.  The eyes themselves have perfect vision apparently, but due to the fact they are always moving they cannot focus properly resulting in the short-sightedness.

Nystagmus affects around 1 in 1,000 individuals according to my Ophthalmologist or 1 in 5,000 to 10,000 according to the Wiki Article, I'd rather believe the former over the latter in terms of reliability though.  You can't know for sure how many people have it however because you can't guarantee that everyone who does has been diagnosed, some people may have it but are completely unaware depending on how noticeable the movement is.  This movement is constant, it never stops and if you were to develop it later in life it would result in a condition known as Oscillopsia - this is where you see moving images similar to watching a camera shake when filming.  For me personally and for most people who have the condition from birth, the brain develops a method of processing what the eyes see by reducing the "frame rate" of the eyes.  Human vision isn't processed in frames of course but this is the simplest way to explain the concept.  If you think of normal vision being 60 frames per second, then the processing that someone with Nystagmus has involves reducing those 60 frames into pairs of frames, comparing each, and stabilizing the image, resulting in a stable video feed that has a lower frame rate but doesn't shake.  What this means in practice for me and others with Nystagmus is that we don't see things as moving or shaking, but our ability to perceive motion is impaired.  If things move beyond a certain speed then we won't see them at all, likewise if we move beyond a certain speed ourselves then we don't see things that can be right in front of us.  One of the most frustrating things about the condition is the idea that there's nothing actually wrong with the eyes themselves when all of the difficulties the condition brings are associated with your vision.

As our eyes work constantly and so do our brains to compensate for the added motion, there is a lot of strain involved.  Headaches are to be expected, they are a normal part of life for someone with the condition, and if you spend a lot of time reading then migraines will inevitably ensue if you can't take a break or if you can't use aids such as magnifiers or large print or lower resolution displays to be able to read with more comfort.  Beyond the physical strain there are also emotional and psychological elements involved in terms of the effects the condition causes in the individual - i.e. lack of confidence in social situations, lack of understanding from others, and in some cases ridicule on account of the fact that you are different.

Nystagmus is not contagious, and as far as most research goes it's not considered to be genetic either.  Having said that, there is no known cause of congenital Nystagmus - since birth.  Since there's no known cause, you can't really rule everything out as a cause, all you can do is examine evidence and draw conclusions.  To that end there's no evidence that it is contagious, no-one has ever caught the condition.  There is an understanding that it is neurological in nature and that it relates to the communication between the brain and the eyes.  You can develop Nystagmus later in life as a result of blunt-force trauma, such as a car crash, or as a result of excessive alcohol or narcotic use, in both of these cases the condition is temporary however and will eventually correct itself.  I also know an individual who had a Brain tumour removed and developed Nystagmus as a complicated after the surgery, this too also corrected itself after many months.  I am over thirty years old and I still have the condition.  For me and anyone else who was born with the condition there is no known cause, no known cure, and there is no expectation that it will resolve itself spontaneously.

There are mobility issues which cause difficulty when travelling, for example, not being able to read timetables for buses, or not being able to see the numbers on buses to call them when they approach [buses only stop if you hail them here or if someone wants to get off, otherwise you have to hail them], knowing when to get off a bus can be difficult too as seeing anything outside in detail whilst moving is difficult for someone with Nystagmus.  There are difficulties in Airports reading flight information displays, boarding gate numbers etc, especially in silent terminals where this information isn't read out aloud, and the same applies for train station displays too - the only experiences I have had that were exceptions were the Tube [Underground in London], and the Paris Metro, both of which the train stops at every station and the maps are huge, services are also high frequency and you don't need to worry about time tables.  The things I find it hardest to cope with though are the social situations it provokes and the lack of understanding from others.

Everyone in my circle of friends knows about my condition and they have asked me everything they needed to know and they are the best form of support I have.  The situations I refer to mainly involve strangers.  That moment of awkwardness when they notice it, stop for a moment and stare, then realise and pretend like nothing happened or worse start asking questions.  It's like this, if I am never going to see you again just don't ask questions just do your job.  I tend to avoid eye contact with people because of this which tends to make social situations worse, makes me and everyone else feel awkward and has led to situations where other people have attacked me for being rude.

To put things into perspective for you, to show I am not overreacting, if you had a red birth mark under your eye that was so obvious it looked like one of Ronald McDonald's red cheeks, and people stared at it and put you in the same situation, highlighting something you were self conscious about, something you couldn't change and something you likely answered the same questions about a million times before, do you think you could retain the ability to smile and go through the same routine?  Would you not find it rude people asking about your physical appearance, complete strangers like they have a right to know?

Finally owing to the cruelty of children, I'm sure you can imagine school wasn't exactly the most accepting and supportive environment.  The teachers weren't that much better most didn't know of or understand my condition, they had no idea of what adjustments could be made, and at times it just felt like I was a frustration or an inconvenience.  I have said before there are a few teachers who I regard very highly and I am pleased to say I never had those difficulties with them but this just highlights how much of our environment is influenced by the actions and attitudes of other people.  Other people make life difficult and complicated for us, not just me or people with Nystagmus just people in general, life gets complicated when you have to factor anyone else into it.

I would also add in conclusion that everyone's experiences in life are different and when it comes to things like difficulties and disabilities, some people can adapt much more than others, there's no universal measure of how much something like this will impact your life.  There are a lot of things I can't personally do because of my condition, I'll never be allowed to drive for example, it's illegal for me due to the level of sight I have, but this doesn't mean that everyone with Nystagmus can't drive, there are some people who can. and there are others who can't.  Each person's circumstances are different and the only real way you can get to know how it impacts them is to ask, and listen to what they have to say.  Always remember that because you can do something does not mean others can, even if they are in the same situation as you, what each person is capable of will vary.  With the psychological impact in particular there is often an attitude especially one held by those who are well adjusted, that those who are not just aren't trying hard enough, this idea is ridiculous however and it is the same toxicity that leads people to be unwilling to discuss things like depression in general not just as a consequence of physical illnesses.