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Meet Lucie!

Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an active and interesting life is paramount to me and I can assure you that my childhood was never boring!

At the minute I’m working as an apprentice at a riding school and training for equine qualifications. I’ve passed a fair few already. I have my own horse called Heidi whom I adore. We compete in affiliated show jumping regularly. In the past I’ve also enjoyed skiing, trampolining, golf and rock climbing. I’m also really into running, especially long distance, and I’m hoping to run the London Marathon to raise money for the Nystagmus Network next year.

Like many people with nystagmus, I struggled at school. Asking the teachers to write in a dark pen on the whiteboard and enlarge worksheets was always awkward, but, if you can manage to pluck up the courage, it will be easier next time.

PE was difficult, especially ball games. I used to get hit on the head a lot by the ball because I didn’t see it coming. So we invested in a rugby hat and a gum guard. I suppose I looked a little odd, but I didn’t have to sit out in PE, which I would have hated, so it was good with me! I have some difficulties when I’m jumping or doing dressage twist. I have to remember patterns and sequences and the colours of the jumps so that I know where I am.

When I was learning to play the piano, rather than reading the music, it was easier if my piano teacher played me sections of a piece and I copied them back. When my friends and I go out clubbing, I always make sure I’m attached to someone so we don’t get separated. My friends are all amazing and understand. We went to a club once that had a lot of smoke and strobe lighting that made it difficult to see, but we all just held hands and danced like that so we didn’t get lost! I think my main message is that you can do whatever you want to do and you will find a way around it to make it work.

Informative, inspiring, emotional and motivating!

Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.

Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.

The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.

Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.

Mark

Mark’s story

I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened – luck or design?

My arrival back in the 60s was a great cause for celebration. My family had just moved from Dover to a market town nestled at the base of the South Downs. My brother and sister were two years apart and happy healthy children. My father had just accepted a promotion as a district engineer. They had a new house on a new estate and to top it off I was born.

Apparently I didn’t wreck the party. My sister remembers dad breaking the news to her on the way to the nursing home. ”He’s got something wrong with him, shall we send him back?” He was promptly whacked around the back of the head by my grandmother, who reminded him first to keep his eyes on the road and second, Aunt Jess had also had congenital nystagmus, “and she could play anything on the piano after a sherry”. That’s true, said Dad, “but that talent may not be enough to get him into the civil service or a cricket team”. Another tweak silenced him and my eyesight was never mentioned again.

Once I had been allowed home, I settled down to a long period of recumbent bliss. I was very happy and didn’t want to exert myself. I had blond spiky hair, a fat little face and a happy disposition. Dad would often get someone to poke me so he could capture a smile on his latest gadget, a 35mm cine camera. It wasn’t until after a year, when I still showed no signs of sitting up, that people started to worry. Dad complained that the films were getting boring and that there was a limit to how interesting a horizontal baby was.

Mum took a more practical view. I had all the tests of the day and saw doctors, specialists and health visitors. Sure enough, in my own time, I did eventually sit up, speak, eat and learn to walk. It was here I made my first big mistake. One Christmas, I picked up a discarded plastic ball from a cracker and threw it to my brother. My father’s face lit up with excitement and a huge grin spread across his face, fuelled by a seasonal eggnog. Mother sighed as my father reached for a cricket stump and held it aloft, brandishing it as some kind of ash light sabre. “That’s me lad!” he cried, as he knocked the fairy from the tree, lost his footing and collapsed into a plate of mince pies. My training as his young apprentice was about to begin.

Dad and Obi Wan did not have a lot in common. I’ve seen all the Star Wars films and I don’t recall the Jedi master ever calling Luke Skywalker a “fat head” or chastising him for avoiding a particularly nasty full toss. To be fair, I also don’t remember him giving Luke as many hugs, smiles and kisses as my father gave me. What they did have in common, however, was love, support and a willingness to let their young students live their lives and make their own mistakes.

It’s only with the birth of my children that I realise they must have been incredibly apprehensive about sending their youngest out into the world. True, they had some history of bringing up children, but now they were in uncharted waters. They never pushed me in to see if I sank or swam, they just encouraged me to paddle and watched from the shore.

All was bobbing along nicely until, by a disastrous series of events, I was picked for the school cricket team…

Sound tennis

have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it.

In 2014, however, we started playing Sound Tennis in Brighton and Hove. Sound Tennis uses a spongy ball that can be heard when it bounces. Those with no or very limited vision (B1 & B2) are allowed 3 bounces. Partially sighted players (B3) are allowed 2 bounces. The extra bounce(s) allow more time to locate the ball. For me lighting conditions and colour contrast make a big difference so in some situations I rely more on hearing to tell where the ball is. Little did I realise how addictive the game would be. I learnt to serve, hit backhands and forehands and gradually hold rallies and hit winning shots.

My colleague, Christine Laurence, who also has nystagmus, had been travelling to London to play the game and contacted me to ask if I would be interested in helping to set up a local club. We organised a launch in February 2014 and were amazed that 29 people turned up, 19 of whom were visually impaired. Sound Tennis Sussex was off to a flying start.

Since then we have helped to set up groups in Shoreham and Eastbourne with others planned. A number of us have taken part in competitions in Newcastle and Cambridge and the National Visually Impaired Championship at the National Tennis Centre at Roehampton, London. We also organised a tournament against a team from London and held a friendly tournament with the Eastbourne club. In November 2015 we received the disability programme award from Tennis Sussex at a ceremony at the Amex stadium.

We have a number of players with nystagmus. The age-range of players is from children to the over 80s. Many like me have never been able to play a racket sport before, but others have been thrilled to find that they can continue or resume playing tennis after a diagnosis of sight loss.

Sound Tennis is growing fast in the UK and across the world and there are ambitions to get the sport into the Paralympics. There are a number of clubs in cities around the country where you can go along and give it a try. Visit www.soundtennissussex.org.uk to find out more.

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.

Hana's daughter

I’m the parent I never thought I’d be

I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all go merrily on our way.

While somewhere in the back of my mind I probably knew that this was an unlikely scenario, I still wanted it to be true. No one could tell me for certain what kind of accommodations she’d need because no one knew exactly what her capabilities were. Maybe her vision wouldn’t be that bad. Or maybe it would be terrible. But I was pulling for “not that bad” and if “not that bad” turned out to be the case, then maybe we could squeak by with only minimal accommodations. And maybe I could continue being the laid back parent I wanted to be.

Preschool went well. She sat in front on the rug. Her teachers let her come up and look closely at books being read to the class. See – not that bad, this whole visual impairment thing. And then my daughter’s vision teacher suggested she take a test to see if she could qualify for the gifted program in New York City, where we live. My son was in the program already and loved it. It made sense that my daughter would qualify for the program too. I checked off a box on a form requesting a large print test, and thought, maybe that’s all she needs. Maybe we go through life checking off boxes for large print tests, and everything else just goes according to plan. But when the results came back, it was obvious that large print tests were not going to be enough.

When I called the department of education to say I thought perhaps she hadn’t been able to see the large print test, they dismissed me. Not everyone qualifies for the program, they said. Clearly I was just another pushy mother who felt her child’s genius hadn’t been properly evaluated. It’s possible that if I’d been listened to the first time I might have continued being the laid back parent of my dreams, or maybe this was the inevitable shaking I needed – someone grabbing me by the shoulders and saying: if you don’t stand up and yell for your daughter, no one else will do it.

So I stood up and yelled. And many months and meetings later, the department agreed to give my daughter the test in a digital format where she could control the size and the contrast. Lo and behold: she tested into the program. But it’s hard to be the screaming mother all the time. And by the time my daughter started Kindergarten I thought: I got this. I got the largest department of education in the country to change the way they test visually impaired children, after all. Surely I can navigate Kindergarten.

I met with my daughter’s teachers before school started to walk them through the technology she’d be using. The rules, which were new to me then but I can now recite in my sleep: she sits in the front of the class, she uses an iPad, please remember to charge her CCTV. And then one day my daughter came home and said she hadn’t been able to see her math test. So I emailed her teachers.

“But she didn’t say she couldn’t see the test,” they wrote back. “And also, she got all the questions right.”

I picked up the phone and called the teachers, and said the words that I now know I will be repeating often and for the rest of my life: just because she did well doesn’t mean that with the correct accommodations she can’t do better. I wish the cadence were better, that there was a short poem I could write or a snappy six word phrase that could convey the same information, but if there is I haven’t found it. Nonetheless, this has become my mantra.

Last month my daughter started first grade. At the meeting before school with her teachers I shared the story of the math test and the gifted test. We also discovered together that her reading level had been assessed incorrectly.

“We are navigating this together,” I said to the teachers. “If we’re not partners then it’s not going to work, and I’m going to be calling you up saying she couldn’t see something.”

I don’t know if I came across as an overlycrazed helicopter parent or not, but I don’t care. This is the kind of parent I am now. The next week, when my daughter came home from school with a book at her correct reading level, accompanied by a CCTV and a note from her teachers asking if I might be able to download the book to her iPad, I knew that this is how it will be from here on out. I can luxuriate in being laid back with my son, but when it comes to my daughter, I’m the parent I never thought I’d be. And I’m okay with that.

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!

The Nystagmus Network

Training boost for orthoptists

Future generations of orthoptists graduating from Sheffield University will be even better placed to help nystagmus patients thanks to a new £30,000 eye movement recording laboratory. Only two other universities (Liverpool and Glasgow Caledonian) train orthoptists, so Sheffield’s new facility will have big impact on the profession.

Within five years around 250 orthoptists will have trained in the lab, giving them enhanced skills in the diagnosis and management of nystagmus. This means that nystagmus patients in hospitals across the UK – and beyond – will benefit from the new facility. The lab will also help to diagnose patients with nystagmus in both Sheffield Children’s Hospital and the Royal Hallamshire Hospital.

As well as its role in training new orthoptists, the lab will enable orthoptists in Sheffield University to carry out research. They already plan to develop ways of assessing functional vision in children and adults with nystagmus. Sheffield will also investigate the effect of ageing in patients with nystagmus and whether additional visual stimulation could improve the vision of children with nystagmus.

The Nystagmus Network is contributing £10,000 to the new facility, thanks to a donation from the EBM Charitable Trust. Sheffield University and Health Education Yorkshire & Humber are also contributing £10,000 each. The investment confirms the UK as one of the leading countries in the world for nystagmus research. Nystagmus Network is already funding projects in Cardiff, Leicester, Moorfields (London), Plymouth and Southampton.

Separately, Nystagmus Network has awarded a £1,000 grant to Sheffield to develop a standardised nystagmus information pack for hospitals to give to patients, parents and carers. This project came about after a team of orthoptic lecturers and students took part in NN’s Newcastle Open Day in May.

Moorfields asks big questions

Moorfields Eye Hospital in London is looking for answers to two of the big questions in nystagmus. Firstly, what impact does nystagmus have on the developing vision of young children? And secondly, is there an optimal time for intervening with glasses or surgery?

The Moorfields project will study 30 infants with nystagmus and should be completed during 2017. This project is funded by Fight for Sight, the Giles Warman Foundation and the Nystagmus Network.

Moorfields is also benefitting from a separate £550 grant from the Nystagmus Network towards the purchase of diagnostic equipment for a new paediatric nystagmus clinic

George and his mum

George has nystagmus – goodbye!

My son, George, has congenital idiopathic nystagmus. The terminology may be familiar to ophthalmologists, but it’s baffling to anyone else. In George’s case, no one can identify a cause.

So begins our story of discovery about nystagmus, what it means to those who have it, to those around them and the shocking ignorance of people who should know better.

George was born without complications in July 2006. I knew there was an issue when, unlike his older sisters, he struggled to make eye contact during feeding and his eyes wobbled constantly. At 5 months the local GP sent us for video sight testing, which he failed. The follow up appointment with the consultant lasted 5 minutes and went along the lines of “George has nystagmus; he will never go to a mainstream school; an optometrist will see him yearly. Good bye.”

It took another year to research consultants who specialised in nystagmus, hold the consultant to ransom for a referral and finally, aged 18 months, we were on the list for Prof Gottlob’s clinics in Leicester – a 5 hour drive from home.

Over the next few years George fell down steps, walked into walls, screamed in shock when anyone spoke to him in his pushchair. He would run to cuddle or hold hands with any woman bearing a vague resemblance to me, recoiling in horror when they spoke.

When George started school, the teachers were provided with a Nystagmus Network information pack. I told them I had no idea how the condition was going to affect him at school, but I did know he would struggle to identify friends with everyone in school uniform and they would need to show him the difference between the girls’ and boys’ toilets!

The impact of nystagmus became real in February 2015 when George was 8.5 years old. He ran into a wall during a PE lesson, a teacher asked if his constant eye movement was a symptom of autism and I witnessed a child snatch a football off George saying “There’s no point, you can’t see it anyway”. Apparently kicking a ball and hoping for the best isn’t good enough strategy for competitive 9 year olds.

There followed a set of meetings with his teachers and the local authority’s visual impairment advisor. It turned out that George couldn’t see the whiteboard, could only read red text on a blue background and used his listening skills to locate people. He thought this was how all people saw. His exceedingly high academic performance meant we all thought he was coping. When he’s scared or upset, his brain abandons his eyes to control his emotions. At this point he says it’s as though water has filled his eyes and whatever sight he has is gone.

The Nystagmus Network suggested George put together a presentation for his classmates to give them an idea of how the condition affects him. I’ve spent many hours finding activities for him such as blind football, blind sailing and soundball (tennis) which is opening up a new world of sport.

After all this, school still managed to lose him on a day trip to the British Museum. He was left looking at an exhibit and then followed a construction worker in a hi vis jacket into a restricted area thinking he was a teacher. When I asked how George managed his way into an unfamiliar and busy building they replied he held onto the child in front’s rucksack strap. How demeaning.

I’m still angry with school for not bothering to find out more about nystagmus. George has another new, fresh-out-of-university teacher next year so I’ll sound like the paranoid parent going through it all again. He hates my drawing attention to it, but if I don’t, people don’t understand.

At a recent gathering of old friends I asked George why he didn’t say hello. He said he didn’t recognise their voices or see their faces properly. So I said “Well, get up close to see them!” He replied “How would you feel if someone got up close to check out your face?! It’s embarrassing”.

The good news is George is more willing to talk about what he can and can’t see, how annoying it is when traffic crossings don’t beep and looking forward to the day he can ride a bike without me behind shouting instructions. He crosses the road by listening to tyres on tarmac and his ability to decode what he can see with conviction is absolutely extraordinary.

The future? I’ll still be desperately trying to educate teachers and encouraging George outside his comfort zone to approach activities in a slightly different way. He wants to fulfil his dreams of joining the army, but realises he will only be a sniper if the enemy wears hi vis clothing and stands still. He may stand more chance on the technical/engineering side or he can join the Paralympian football team.

He still holds my hand in unfamiliar environments and for that, I’m grateful. He can’t find me in the audience at school performances. For that, too, I’m grateful as I’m often late. I love his imagination and interpretation of the world he hears. His speech is so eloquent that he is a testament to the power of listening. He may not see as well as other children, but that doesn’t mean his dreams for his future have to be sacrificed.

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.