How amazing is Rosine?

Hi there. I just wanted to share with you the amazing journey I’ve embarked on in Blind Tennis, a sport that has given me my freedom, my independence and my life, whilst living with Nystagmus, strabismus and astigmatism! A couple of weeks ago I was part of the team of 8 representing Great Britain in the second international blind tennis tournament, where I finished second in the world (behind Chris Baily) and won silver! I’m super keen for others living with nystagmus to come and try VI/Blind Tennis and for them also to discover their potential!

Read my story here.

 

How amazing is Charlie?

I’m Charlie, I’m 14 years old and live in Lincoln. I live with my parents, my brother and sister. I’m currently studying for my GCSEs. I would love to do Maths, Psychology and Government and Politics A levels. Eventually, I’d like to train as a Barrister in Criminal Law.

My life growing up has always been a tricky one, being registered as visually impaired from 3 months, being born with optic nerve hypoplasia and nystagmus. it’s been a roller coaster of a ride both for me and my parents, me inheriting the condition from my lovely mum.

Starting school, from what I can remember, was always a tough one, not being able to run around, do sports, finding the work challenging as the writing in books gets smaller and smaller. Yes, the help is there from teachers, but the challenge is far greater to focus on the work, locate friends in playgrounds and keep your eye on the ball in sports. 

Being different from everyone else was hard, unable to make friends as I couldn’t look them in the eye and not being able to understand or see their body language, made other kids not want me to join their games or their circle of friends. So, for the first few years of school I spent most of my time alone in the playground or walking and talking to my learning support assistant, isolating myself more and more as people didn’t understand and didn’t really want to, as it was harder for them or so they think. 

Setting myself goals and challenges was the best way for me to cope, wanting to prove to everyone that just because you’re visually impaired doesn’t mean you can’t achieve what you want in life. 

By the time I was in year six I had learnt to understand that there was a future out there for me, if that’s what I wanted. Staying on in a mainstream school and attending a mainstream secondary school. Unfortunately, during my last year at primary, my sight took a bit of a turn, resulting in a further diagnosis of Ocular Albinism, associated with the ONH. My vision is now really poor, a blow, YES totally, as I now need a cane to navigate, a laptop to write and read and Braille if I need it. I’m now registered as severe sight impaired/blind. 

Choosing a secondary school was a huge challenge for both me and my parents. It was a tough decision, but I wanted to stay in mainstream education. My school supported me as best they could and continue to do so. Yes, there have been plenty of ups and downs, more downs than ups, but with help from some great teachers and the learning support team I’m able to fulfill my dreams of an education that I can be proud of. I don’t have friends, can’t seem to make friends and am the easiest target for people to HAVE A GO AT, I know that’s the politest way to put it, but that’s how it is. 

The start of the last academic year was the worst, constant verbal abuse, name calling, using my sight (or lack of it) to make fun and tease. It’s a struggle enough trying to cope with everyday life being visually impaired, you don’t want the hassle of immature kids adding the pressure to what is already a challenge. With the help and support of my parents and from the learning support team at school things are now a little better, I’m learning to cope with the verbal abuse and am concentrating on my studies, which I enjoy.

Being positive has inspired me to help others in the same situation as me. I currently volunteer for our local sensory team, helping younger children at various events and supporting them with a shoulder, if they need it. This has been a great achievement for me as I enjoy supporting and helping younger children to gain confidence.

I’m currently completing my DofE Bronze award, with the charity VICTA. In order to complete the Bronze I’ve taken up Karate. After 12 weeks of training, where I get one to one support, I’ve completed my Red Belt in Shotokai Karate. I also attend a Debating Club at my school. I work with Year 12 and 13, discussing different topics every week. It’s great to argue!
Finally there’s my volunteering work with BID LINCOLNSHIRE, supporting visually and hearing impaired children. 

I was recently nominated by my school for a lifetime trip to South America visiting Peru, Ecuador and the Galápagos Islands for four weeks in the Summer with the JoLT Trust Charity. It takes 18 young disadvantaged teenagers on a trip of a lifetime. I was chosen as 1 of 64 from hundreds of applicants to go for an interview with the trust. After travelling down to London, a few weeks later my school informed me that I’d been accepted on the trip. It’s a great honour as this is something that I know I’ll absolutely cherish. Seeing the world (or not seeing much) in my eyes is something that will blow me away.

I’ve been doing some fundraising for the trip as we have to raise £750 towards the cost. For this I have run 4 X 5K Park Runs with a guide, something which I loved. Even though it was a struggle,  I did it and the funds are now raised. 

Yes, this will be a journey of a lifetime. I will absolutely love being able to travel independently and experience the different cultures of these countries. If a positive comes out of this then so be it. Gaining that independence and confidence is far greater than any friendship. I can show people that YES I am normal just like them. Having a visual impairment doesn’t stop you, or at least shouldn’t.

Whilst a lot was going on a year ago I wrote a poem to try and express what my life was like being visually impaired. I thought I could share it with you, hopefully it will help you to understand me.

WHY DO PEOPLE JUST STAND AND STARE;
WHY DO SOME PEOPLE SEEM SO UNAWARE;
THE WHITE CANE I HOLD IN MY HAND IS A BIT OF A CLUE;
IF YOU STAND TOO FAR AWAY I CAN’T SEE YOU;

I HAVE A CONDITION THAT REDUCES MY VISION;
I CAN’T EVEN SEE MY OWN TELEVISION;
I STRUGGLE ON ALTHOUGH IT’S HARD;
AND ALWAYS HAVE TO BE ON MY GUARD;

THE WORST THING IS WHEN PEOPLE THINK ITS FINE;
TO KICK MY CANE OR EVEN WORSE STAND IN MY LINE;
JUST TO SEE IF I WILL MOVE OUT OF THE WAY;
ITS JUST SILLY AND TRIVIAL CHILDS PLAY;

I DO NOT CARE FOR THESE TRIVIAL GAMES;
OR WHEN PEOPLE JUST CALL ME NAMES;
IT HURTS WHEN THEY DO BUT I AM STRONG;
AND ALSO DETERMINED TO GET ALONG;

I CAN NOT HELP THE VISION I HAVE BEEN GIVEN;
BUT BELIEVE ME THIS I AM FULLY DRIVEN;
TO GO OUT AND ENJOY MY LIFE;
AND MAYBE ONE DAY EVEN GET A WIFE;

I HAVE LEARNED TO BE STRONG AND CONFIDENT;
BY THE ONE PERSON WHOM I CAN COMPLIMENT;
WHO HAS ALSO STRUGGLED AND OVERCOME;
IT IS OF COURSE MY WONDERFUL MUM!

How amazing is Matt?

Matt has nystagmus, but, as his Mum tells us, he is on the road to a stellar career.

Matt is currently the director / choreographer for a production of Joseph in our local area later this year. There are 50 young people in the show and he works tirelessly for the group. He has been part of the production team and chairman of the group since it started 3 years ago. He gives his time totally voluntarily. He has also gained grade 8 in Speech and Drama, Musical Theatre, Classical Singing and tap dancing. He also performs with our local amateur musical theatre group.

How amazing is Katrina?

Katrina thinks she’s just a regular student who happens to have nystagmus – we think she’s an amazing nystagmus ambassador!

Here’s Katrina’s nystagmus story …

I am 19 years old. I attended a mainstream school and was treated like everyone else. I felt no different. In my exams I had A3 papers and extra time, which helped a lot. I came out of school with 9 GCSEs. My career goal is to gain an apprenticeship doing Business Administration or Digital Marketing. The person who inspired me was my Grandad. I always looked up to him. Now I’m at college and I also volunteer with Youth Zone and Shopmobility doing administration work, which I thoroughly enjoy. 

What Katrina didn’t tell you is …

In May 2018 Katrina joined the Big Blind Walk!

Katrina spent some time walking with Julian Jackson as his Big Blind Walk took him through Carlisle and on to Scotland. She told Julian all about nystagmus and how it affects her.

Katrina says:
“It was an absolute pleasure to meet Julian and to walk with him.”

Julian messaged us to say:
“I was delighted to have Katrina walk alongside me for a distance out of Carlisle early this morning. We discussed her Nystagmus and I am so grateful for the support she has given the Big Blind Walk.”

We say:
“Well done, Katrina. Fabulous nystagmus ambassador!”

A unique way to raise awareness

Vicky is a nystagmus Mum who came up with a really different way to raise awareness of nystagmus in the run up to Nystagmus Awareness Day on 20 June.

She tells us:

“Here are some rocks I’ve painted as part of the “Rocks of Swindon” project about hiding and finding rocks around Swindon. I thought this would be a great way to raise awareness of Nystagmus. My 4 year old son was born with Nystagmus in one eye. Not a lot of people know what it is or have ever heard of it so hopefully this will help spread the word!”

It certainly will help raise awareness. What a brilliant idea!

How amazing is Mehak?

Growing up with nystagmus and albinism, I hated school and social interaction. I was always self-conscious and easily embarrassed that my weak eyesight, poor balance and hypersensitivity to sunlight made me rubbish at activities like sports and hiking. I was, however, always good at academics and especially loved reading. In my early years at school, I enjoyed stories so much that I was usually a reading level ahead of my class. Writing, on the other hand, was much more difficult. My mother recounts how slowly and painstakingly I learned to form each letter and number, giving both her and my teachers a hard time throughout the journey. Then, in about the second or third grade, we began learning how to use computers and I promptly fell in love with technology. I loved typing instead of writing even though it was – and still is – difficult to read the small font on a computer (and now smart phone) screen. I was embarrassed to have to lean close to the screen, but I was also having too much fun to be deterred. As the years passed, I kept getting better at writing and using computers despite my weak eyesight. At college, I finally learned HTML and that led me to start a simple blog and customise it just the way I liked. I went on to pursue a master’s degree in Communication and topped the class. Today, I am a writer and online content creator, leveraging technology to do what I love, despite the challenges. Facing screens all day is often so tiring because my eyes strain easily and I don’t have the best posture while working (in order to see better). But I love what I do and I enjoy learning new technologies all the time. I am currently teaching myself web design and working on setting up my own website. I have been blogging informally for years but have decided to get more professional with it now. I am also working on my first novel and hope to finish it soon. I feel that having nystagmus and albinism has made me a much stronger, resilient and empathetic person. I still get self-conscious and afraid to interact with others, but I am also much more confident than I ever dreamed I could be. I appreciate the fact that every single person faces challenges, but we just have to keep going and work out a way to do whatever it is that we really want to!

How amazing is Rylan?

Rylan’s Mum says:

“My son Rylan was only diagnosed with nystagmus in Reception at school, although I had always noticed his eyes swinging from side to side.
He is just turned six and is the first free reader in his class! We are so proud as we know scanning the words isn’t easy for him and he gets very tired after a while.
He is amazing though!”

We think so, too! Well done, Rylan!

 

How amazing is Suzanne?

I wanted to share my story to show people with nystagmus that it doesn’t have to stop you from fulfilling your dreams.
I was born with nystagmus and my parents were told I would need lots of help and wouldn’t manage mainstream school. Well I did manage it, and also managed college, university, and thereafter a masters degree in Stockholm in Sweden. My chosen direction of study was light and health, and lighting in architectural design.
I have always loved the visual arts (ironically), but lighting was most important to me because of my nystagmus. I wanted to understand how lighting contributes to aiding or in some cases impeding the visual experiences a person has, particularly with nystagmus. The lighting we apply to a space, be it a church, an airport, a restaurant or hotel, or even a street lit at night, plays a significant part in our experience of that environment. Not just in terms of atmosphere, but also in relation to way finding, and whether we feel safe and comfortable in that environment.
I completed my masters degree ten years ago, and have since built up my career in architectural lighting. It has also suited my addiction to travel as I have visited many countries to study the local architecture as well as work related travel for various projects I’ve been involved with.
Being originally from Aberdeen, I began my first job as a lighting designer in Edinburgh. My itchy feet shortly got the better of me though, and I was soon enough back in Stockholm to take up a new position in lighting there. I am currently living in Hamburg in Germany, and have very recently started up my own lighting design company, through which I hope to raise further awareness of lighting and its importance for a more inclusive environment. Not just in Germany, but internationally…..wherever my work takes me really!

How amazing is Alfie?

My son Alfie who is almost 10 has never let anything stand in his way despite now being blind in one eye and having Nystagmus. Alfie persevered in learning how to ride his bike last year and got one for his 9th Birthday. He is going to be sitting the 11+ this September because he is determined to get a place at Grammar School. He has just been on his third skiing holiday and was told by his instructor that he should start training to become a Paralympian!