Nystagmus awareness day 2015: The way I see things

Today on the 4th November 2015 is Nystagmus awareness day. so in support of the day and to raise awareness of my own Nystagmus, I have decided to write a blog about it.

You may be wondering what exactly is Nystagmus? As many people haven’t heard of it before, where it comes from and how it is part of me. Nystagmus is a neurological condition that causes involuntary eye movements. This basically means that your eyes have a life of their own and tend to ‘wobble’ or move unexpectedly. As a child I used to joke that I could see around corners, and looking back there is some sense to that argument, despite never really having the ability to look around corners. Understanding a complex eye condition is very difficult for a five year old to comprehend. I have just done a quick google search of my eye condition to provide some background for this blog, but I only came across complicated medical journals that are impossible to understand, so I have decided to talk about how I’ve seen my Nystagmus and how it feels to me, because I know that is what people want to hear.

With all the research I have done recently, I’ve concluded that neurology is incredibly complicated and my own neurological system seems to be twice as complex. I understand why doctors spend millions of years studying this kind of stuff. As a young child from the age of two, I have seen specialist after specialist throughout my life. I don’t have enough fingers to count the number of doctors I have seen on my hands- the hospital became a second home. I was very used to being tested and had all the scans and tests they could offer me- the truth being for years I baffled the doctors, they didn’t understand me and couldn’t make a definite diagnosis. I had so much going on in my brain that was so unusual for such a young child. Eventually my eyes were flagged up as an area of concern and I was referred to an orthtoptist and then an Opthalmologist. I remember little from these visits to this eye doctor, apart from him constantly asking me to follow his wooden horse with my eyes. I was more interested in playing with the horse- so carrying out this test was probably very frustrating for him. I guess he also carried out the usual vision tests to check my visual acuity. For a while, as people didn’t understand me, they thought that I had a squint or lazy eye, and I distinctly remember having to wear what I can only describe as a pirate patch for the first few months of reception- massive NHS glasses and a pirate patch isn’t necessarily the best way to make friends when you just start school. I wish I had a pet parrot- that would have really completed the look.

Doctors were so fascinated by my unusual eye movements, it sparked interest from a professor in London at Charing Cross medical school. When I was ten, he came up to visit me. During his visit, he conducted an examination in front of hundreds of medical students. I remember sitting in a huge lecture theatre, being totally unphased as many medical students were watching on in fascination. As the ten year old that I was, I took it all in my stride being so familiar with being investigated. A video of my eye movements was also sent down to another professor at Great Ormond Street, when a diagnosis of Internuclear Opthalmosplegia was finally made and that there is limited abduction in my right eye. This basically means that I struggle to look left and right with just my eyes and that I often turn my head more to compensate for this. It also means that when I am tired or stressed, my eyes will move of their own accord and when I was younger this caused blurred vision and difficulty seeing the board at school.

Growing up with an eye condition as a young child has been difficult, especially with my extremely rare Nystagmus. There are other forms of Nystagmus that are far more common. Nystagmus is less understood or known than other eye conditions, so sometimes I find it almost impossible to explain. Just writing this blog has been a real challenge. Nystagmus can’t be corrected with glasses or contact lenses and there is no magic operation to make it all better- you just have to learn to adjust your life to include your Nystagmus. My particular Nystagmus is caused by a lesion deep in my brain stem, that was possibly caused at birth but no one really knows. Some Nystagmus’ are congenital and some are acquired. Some peoples Nystagmus causes dancing eyes, when they constantly flicker, but my eyes don’t dance- they just occasionally go and investigate a world that seems to be more exciting than the one we are all in.

As with many Neurological conditions, Nystagmus comes with it’s challenges- fortunately my Nystagmus hasn’t affected my sight and my field of vision is normal (with good 3D vision according to a recent test) -I have no idea what that actually means! Sadly many people with Nystagmus are so severely affected vision wise that they are registered blind- as I discovered by the amount of people with white sticks and guide dogs at a recent Nystagmus event that I went to. Personally my Nystagmus affects depth perception and judging distances, this makes crossing roads a nightmare. I also take longer to see something, so for example a car coming up ahead or someone waving at me from across the street- sometimes I do not recognise people because I am not able to see them in time. Difficulties with visual perception and processing what I see makes this increasingly difficult. Many times I have been accused of ignoring people, when actually I just haven’t seen them. This also affects fixing and tracking, I regularly lose my place when I’m reading and seem to take forever to finish a book because It takes me so much longer to see and process the words. I absolutely love reading though, so I get there in the end.

When I was at school, I dreaded PE lessons, not only because I was uncoordinated but also as it was physically painful- people didn’t understand how simple actions of passing a ball across the room or playing badminton would make me dizzy, feel ill and cause my eyes to be incredibly painful- often resulting in the need to close my eyes to give them break. This is because many people with Nystagmus struggle with following fast movement- explaining reactions of ducking to protect myself from a football that is no where near me, being unable to read numbers on moving buses and my hesitation near roads. Lighting also causes some problems for me, bright lights exacerbate my Nystagmus, the flicker of candles makes me dizzy and I find flashing lights painful- making me feel really ill. I hope you can understand why I can’t stand discos and avoid going to see shows when flashing lights are used- as it physically hurts. Obviously having the added difficulties of Dyspraxia doesn’t help any of this. My Nystagmus is also worse when I am tired, my eyes will wobble more often and can be more noticeable. I also find that walking at night a challenge, the dark makes it harder to see, judge distances and to balance. To compensate for the differences between day and night, I need more concentration to be aware of my surroundings. I find crossing roads at night pretty much impossible, even with a crossing.

As an adult who has grown up knowing that my eyes are unusual from a young age, it has had affects on my life that I am only beginning to understand. As an Internuclear Opthalmoplegia is so rare, especially when diagnosed in children, there is little literature out there- even Nystagmus Network (the only nystagmus charity in the UK) have written little on understanding an INO. I know that Nystagmus varies from person to person and how they deal with and cope with their condition. Some people can feel very debilitated by their eyes and this can make them very unhappy. Personally I have always accepted my INO as part of me, the doctors and specialists were just part of my normal life and I didn’t know any different. I know sometimes I would blame my eyes for causing the bullying I faced at school- but at the time I had very low esteem and had to deal with complex neurological conditions that no one really understood, on top of navigating myself through the stress of the school day- I think I did very well considering. There is evidence to suggest that Nystagmus can affect emotional well being and I know that I’m not an exception to this rule. It can be a very lonely and isolating place when people don’t understand you. I often panic around roads because I do not know when to cross or feel comfortable judging when it is safe, having people who understand that on occasions like this I may need to hold onto you rather than hear comments like ”I can see the cars, why can’t you?” when I try to explain the limitations of my Nystagmus will be beneficial. The biggest concern I have at the moment is whether I will be able to learn to drive. I know that few people with Nystagmus are able to drive, a statistic that doesn’t give much hope for my own future. The DVLA see Nystragmus as having problems with vision- whereas it is so much more than that, my visual acuity is tested as normal and as I have had my condition since childhood it can be argued that I have learned to compensate very well. I also have the added complication of my eye condition being so rare- I don’t imagine that the DVLA are familiar with the complexities of an internuclear opthalmoplegia. I don’t really think I am and I’m living with it.

I hope that this blog has increased your understanding of Nystagmus and the complexities that can come with having such a confusing brain. I baffled doctors for years but now realise that you learn to live your life around your conditions, you compensate and make adjustments if necessary- you certainly don’t fight it. My Nystagmus along with my Dyspraxia and NVLD will never go away, but I do have strategies so that I can live alongside them. I know that I will never be an amazing tennis player or pilot- but that doesn’t matter, because I know it will be physically painful if I tried any of those activities. People taking the time to understand some of the difficulties that my Nystagmus can cause, will enable me to better understand myself too.

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2 Responses to Nystagmus awareness day 2015: The way I see things

  1. Thank you for sharing your story and teaching me about something new.


  2. Nataemily says:

    Great to learn about others experiences of Nystagmus. Having congenital nystagmus myself it’s interesting to know how others experience nystagmus and the treatment pathways they followed. Thanks for sharing your story 😊

    Liked by 1 person

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