Sophie Brown

Can people see past my wobbly eyes?

It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do?

It’s just one of those things. Yet it didn’t seem like that at the time. Even though my condition was congenital, the initial reaction wasn’t to consider that I wouldn’t know any different. Consequently they had no idea what to expect. Would it prevent me from leading a normal life and making friends?

I was brought up not to consider my visual impairment a disability, nor a negative characteristic that limited my activities. At a younger age I couldn’t care less that I was different. It didn’t bother me that I couldn’t ride a bike without stabilisers. My friends and I preferred playing Polly Pockets and going on the swings anyway. But that all changed when I hit the teenage years.

Makeup is something I was never fond of, apart from when I was seven. I attempted to crayon mine and my friends face for a party, but our parents wiped it off again. Then for my 13th birthday mum wrapped up eyeliner, mascara and numerous other makeup tools I never knew existed in a box, kind of like a ‘maturity package’.

The first time I ever applied mascara was in the school toilets. Every girl was wearing makeup apart from me so I decided to join in. Long story short, the mascara ended up everywhere except on my eyelashes. Unlike the other girls, I couldn’t judge where my eyelashes were in relation to the mascara brush. I’m sure you can imagine the response when I came out of the bathroom.

I remember lying on my trampoline next to my best friend the weekend after the mascara incident, commenting on how pretty she was. She returned the compliment, which I automatically brushed away; how could I be pretty when my eyes wobbled and I wore glasses? Plus all the girls at my school said that makeup made you more ‘beautifuller’ (yes I am aware that is not a word). So using their logic, I would never be their definition of beautiful.

Looking back on this now I realise it was complete and utter rubbish! But when you’re a teenage girl who is slightly different from her friends, it’s hard, especially at sleepovers when you’re the one falling asleep at 9pm when you vowed to stay awake all night; but true friends see past that.

Half way through my third year at school I moved classes due to the nasty digs some people I once called friends made on a regularbasis. Nothing was aimed directly at my eyesight, but the little things they did were, such as deliberately sitting in the middle row of the science lab knowing that I wouldn’t be able to see from there. To be honest, you don’t need people like that in your life.

The new set of friends I made were great. They taught me how to put mascara on for starters. They’d sit with me in the front row without me having to beg and plead with them. I was introduced to a larger group of their friends as well; a mixture of boys and girls. I was extremely wary of the boys at first, but once they started talking to me I got along with them just fine. In fact I now have more guy mates than girls!

There was one I particularly took a liking to and it turns out that we were ‘extra time buddies’ during our exams. He’s dyslexic; I have nystagmus. He can’t read; my eyes get tired reading. I’m still a book worm though! We were a match made in heaven/hell/ whichever way you want to look at it.

By the time we were in the fifth year of school we were officially a couple. Okay it took a lot of focusing and straining to try and stare into his eyes, but, on a brighter note, we won ‘The Cutest Couple’ award at prom!

Skip forward seven years (I feel so old) and my eyes have not had a negative effect on my life so far, just as my parents originally thought. Believe it or not, I can’t imagine life without wobbly eyes! They’ve made me see people’s true colours. If I didn’t have nystagmus I would probably still be friends with the first group of people I hung around with, but, let’s face it, you don’t need to be with people who exclude others because they’re different. I wouldn’t have met my boyfriend (yes, I’m still with him!) if it wasn’t for my eyes.

If I didn’t have nystagmus I wouldn’t have something interesting enough in my life to blog about and if it wasn’t for my blog, I wouldn’t have the job I’m currently in. Bottom line is that every cloud has a silver lining.

Sophie Brown

Wobble and me (part 2)

I’d be foolish to pretend that secondary school was a breeze with nystagmus. There were two ways to go about it; suffer in silence, or rise to the challenge. As for me, admittedly I did both.

The first obstacle was getting there, which shouldn’t have been a problem because I lived local. My mum walked with me there countless times, but due to my lousy sense of direction I could never remember the way. Fortunately a few of my friends lived near me so I walked with them. Then there were dips and uneven curbs along the pavement, not to mention the branches that appeared out of thin air to whack me on the head. It took me awhile, but once I had familiarised myself with the way to school, I got used to the path itself.

Bullying is something that every child fears when they take the leap from primary to secondary. Me? I was petrified. I was so scared of being singled out that I did not mention my visual impairment to anyone; I was ashamed of my wobbly eyes. I chose to suffer in silence. Although my mum made the school aware of my nystagmus, I still walked, unchallenged by the teachers, to sit at the back of the classroom with the ‘cool kids’.

That didn’t last long, and I was soon pulled back after class by my English teacher who asked me if everything was okay. Straight away I told him that I couldn’t see the board, but I couldn’t just move to the front because my classmates might pick on me. I got quite upset; English was my favourite subject.

The next day when I came into class, he had devised a seating plan that positioned me in the front row. Virtually everyone moaned, but he blamed it on his inability to learn everyone’s names if they kept on switching seats.

Each year group in my school had at least two hours of Physical Education scheduled per two week cycle. Some people may think that two hours isn’t long at all, but it seemed to drag on forever (especially when we were forced to go outside in the winter wearing shorts and a t-shirt!!!) I HATED it. The sport side wasn’t too bad though. It was when it came to picking teams. Everyone knew how bad I was when it came to running, catching a ball, trying to hit a ball with a bat – anything related to hand eye coordination. It was never a surprise when my name was reluctantly called last of all, even then it was obvious that they’d rather be one person down than have myself on the team. Even when my friends were chosen as team captains, I was still the last one standing. Regardless, each time without fail, I could not help but feel isolated, unwanted, excluded.

Half way through my first year, our English teacher set us an assignment; individually, we had to deliver a presentation in front of the class: something interesting about ourselves. Guess what I did? Nystagmus and how it affects me.

Unfortunately I got marked down on my assignment for pronouncing ‘congenital’ as ‘continental’, but at least the others remembered that. From then on I was called ‘continental nystagmus’, which kind of broke the ice. As my time at secondary school drew on, people became more accepting of my nystagmus, partly because of my presentation – the school even put yellow lines at the end of the stairs because I misjudged a step in year eight, tearing all the ligaments in my ankle (mum said that they should have been there already, but that’s beside the point!!). None of my classmates laughed at me when I screamed and ducked from a netball instead of catching it, they laughed with me.

Yes okay, there was still the odd ignorant guy who would call me four-eyes, or a girl who would snigger to her friends about my wobbly eyes, but what doesn’t kill you makes you stronger. I rose above it. I knew that I was the better person. I walked up to them and showed them the yellow card I got from Nystagmus Network that I kept tucked inside my blazer pocket, explaining in brief about nystagmus (a quick guide for teachers). Mortified that I confronted them, they never bothered me again.

Because of my eyes, I got extra time for my exams, starting from my year nine SATS. All the students who had extra time sat the exams together in a classroom, rather than the main hall with the rest of the year. It was far less stressful, which meant that my eyes wobbled less. Happy days! If I wanted to I was even allowed to have a five minute sleep on the desk!

In fact, I remember finishing my English paper early, so spent the remainder of the time staring at the back of this guy’s hair – my future boyfriend. But that’s another story in itself.

Do you know what? Secondary school days were hard – but with determination and honesty you can get through it! If I can educate a school with 1500 pupils and staff about an eye condition they knew nothing about, then you can too! Don’t be ashamed, be proud that you’re unique!

Sophie Brown

Wobble and me (part 1)

The woman at the piano stopped playing. She asked me whether I liked to sing. I replied I loved singing! She told me to join in with the rest of the school then. Just because I was new didn’t mean I got any special treatment. She began to play again. I squinted up at the hymn lyrics projected on the wall, but it was no use. I wanted to move closer, but I couldn’t because we had to sit in our year groups. I was in year four, towards the back.

My mum had made the school aware of my nystagmus, explaining that I have a lack of vision, especially when it comes to reading things far away. I should have reminded my headmistress then, but I didn’t. I didn’t want to cause a commotion, nor did I want my classmates to judge me before they got to know me, based on my visual impairment. So I stayed silent, lip syncing along the best I could. I was never singled out in assembly again. By year six I knew the words to all thirty hymns by heart.

Twelve years later, I’ve just graduated with an ‘upper second’ degree in drama and creative writing. At college everyone was taken aback by the speed I learnt lines; I could memorise a page of script within ten minutes. They asked me how I did it. I replied pointing to my eyes, “Every cloud has its silver lining”.

Born six weeks early, my sight hadn’t developed. It was quite likely it would remain that way. However after around a month my eyes began to follow the light, leading to the development of my vision. I was around ten weeks old when mum noticed that I couldn’t focus directly on her. My parents took me to Moorfield’s Eye Hospital A and E, where I was diagnosed with congenital nystagmus.

Why I have nystagmus is unknown. There is no recorded history amongst my relatives. My eyes wobble nonetheless. Growing up, I’ve come to terms with the fact that I have a disability there is no cure for. Regardless, my childhood was as ordinary as ordinary can get, apart from the six-monthly check ups at Moorfield’s and the eye patch I had to wear for an hour each day to help strengthen my weaker eye.

When I was younger, I was fortunate that my parents could afford to send me to private school. I loved my first school. My mum and I hosted an assembly where we explained to students and teachers what nystagmus was. Because we made my classmates aware of my condition, no one took any notice that I always turned my head to the left to focus on the board, no one laughed at me when I couldn’t catch the ball during PE; they thought my wobbly eyes were cool. I even had my own pencil with a red sticker on the top so I could easily find it!

I always dreaded sports days. My lack of balance made sack races near enough impossible and I only made it five paces maximum with the egg and spoon. I always received the medal for trying, never for winning, but that never prevented me from enjoying myself. I remember one year, I was no older than six, my PE teacher scooped me up and ran me to the finish line. I still didn’t win, though!

I noticed the differences straight away when I moved to my local C of E primary school half way through year 4. Firstly, the classes were bigger with thirty students in each year instead of six. The school itself was larger, though that didn’t bother me too much because I stayed in one part.

The main difference was the teachers, well one particular teacher. She said I was lying about my wobbly eyes. She didn’t believe I couldn’t see the board from the side of the classroom. That’s when my mum got involved. She made phone calls and raised her voice a lot. Soon a special needs assessor came to visit me at school. She sat down and talked to me. How was I getting along at my new school? Was I finding anything difficult? For the rest of that afternoon she stood in the corner, watching me as I worked.

A week later my seat was moved to the middle of the front row. There was an adjustable wooden slope where I normally put my exercise book. The slope was to place my book on so I didn’t crane my neck to read it. I felt important with my sloping desk, like an artist about to create a masterpiece, except I could never, and still can’t, draw to save my life. My people look like an oversized squiggle of disjointed limbs. I blame my eyesight.

After the special needs assessor, my teacher finally accepted my condition. My headmistress apologised, and every teacher was made aware of nystagmus. When sports day came around I was still dreading it. My classmates already knew I was terrible at PE, I couldn’t manage a rally when we played tennis, nor run without tripping. The thought of racing in front of everyone petrified me. Later, one of my friends noticed me crying and asked me what was wrong, so I told her. That was the first time I ever won a race.