Nystagmus

When I was born, I was diagnosed with a rare condition called Nystagmus.  It 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.

What it basically means for me is that my eyes are constantly moving.  Their motion is the same as 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 yours truly being short-sighted.

It's a bit of a bitch to think that there's nothing actually wrong with the eyes themselves when you associate all the difficulties the condition brings, with your vision.  Beyond the physical strain there is also an emotional and a psychological element 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.

Simple frequently asked questions out of the way first:

Does everything appear to move?
No.  If you were to acquire Nystagmus now yes it would move for you, and within the first 6 to 12 months of my life everything would have moved for me, which as my parents tell me must have been traumatic as I never stopped crying as a baby.  The moving imagery condition is called Oscillopsia but my brain would have adapted to this within the first year or so of life.  Individuals acquiring Nystagmus later in life may or may not adapt and may live the rest of their lives with this moving imagery - kind of glad I developed this at birth and not later in life as things could be horrible.

Is it contagious?
No it's not.  

What causes it?
I have Congenital idiopathic Nystagmus which means I was born with it, there is no known cause.  Some people experience it while drunk but in this case it is considered acquired Nystagmus and usually subsides when the person sobers up.  It can also develop after severe blunt force trauma such as a car accident.

Is there a cure?
No, not at the moment although there are currently some trials involving steroids being tested although I read that this involves injection of the steroids into the muscles behind the eye and the thought of needles anywhere near my eyes is cringe-worthy.

How does it affect you personally?
There are mobility issues due to difficulty in traveling, namely not being able to read timetables for buses, see the numbers on buses to call them when they approach [buses only stop if you hail them here] as well as difficulty in Airports reading flight info displays and train station displays too. Focusing on moving objects is a nightmare so knowing when to get off a bus is a problem too - partly why I never travel alone, unless its on the Tube [Underground] where the train stops at every station and the maps are huge.  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 has 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.

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?

Finally owing to the cruelty of children, I'm sure you can imagine school wasn't exactly the most accepting and supportive environment.

You can feel free to ask me any questions about this and within reason I will answer them, on this blog, please don't hold back no matter how silly I assure you I've heard it all before.

Update: March 2014

In the interest of providing other people's point of view on this subject I found 2 videos below which I would like anyone reading this post to watch.  The girl in these videos covers a lot of the areas I covered and goes on to add, particularly in the second video, about the challenges the confidence aspect can play and specifically the challenges in dating and relationships that crop up - something which I haven't really had to deal with yet on account of not really dating.