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.