Nystagmus Awareness Day – Page 4

Tim Hands – living with nystagmus

Tim has a whole clutch of awards for his work.

He says: I ain’t done bad for a lad that can’t see too well.

This is Tim’s amazing nystagmus story or watch his video

I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to drive.

After leaving school I took a degree in Fine Art in Nottingham and then moved on to the Royal College of Art where I took a Master’s degree in film.

Somehow, despite my lack of visual acuity, I have managed to forge a career in post-production sound for film and television.

Much of my work is re-recording dialogue with cast members and my hearing has been my asset. I may not be able to see dialogue in sync as well as my colleagues, but my hearing is what I rely on.

People I have worked with aren’t really aware of the full extent of my condition. I hide it well and none of the actors I have worked with have even noticed.

My work has taken me to the US and Europe and I have had a pretty successful time working on films such as “Chicken Run”, “Mamma Mia” and “Les Misérables”, as well as major TV series including “Brave New World”, “The Nevers” and every episode of “Game of Thrones”. You can hear my voice in many of these shows, too.

I have been nominated for numerous awards along the way and have won seven MPSE (Motion Picture Sound Editors Guild) Golden Reels and four Primetime EMMYs. I ain’t done bad for a lad that can’t see too well.

Watch Tim’s video online here

a blurred image of busy outdoor scene with lots of people milling around

Living with nystagmus through a global pandemic

Learning to live with nystagmus, finding our way in the world and developing independence creates a range of challenges as we move through the stages of life. Whether we’re talking about an everyday experience or the bigger and more stressful events we face, we all need a certain amount of resilience.

There’s a balance to strike between knowing when to seek or accept support and when to resist. Having someone help you may be the easy way, but we also need to hold on to our independence, develop self-confidence and learn new skills.

The dictionary describes resilience as “the capacity to recover quickly from difficulties; toughness”. Ultimately, it’s something that’s developed through the challenges we face in our lives, often learnt from the things that might not go as well as we’d hoped. Misjudging a step, being misunderstood because we’re not looking someone in the eye, struggling to see a train departure board or a menu, all these build our resilience and that’s not diminished when we choose to ask for help.

The challenges of this last year have added an additional level to our need for resilience. Familiar routines and networks have been removed with the loss of many of the vital distractions, the random meetings, the events to look forward to. In addition, we’ve been bombarded with often unhelpful news tugging emotional strings, loosening attachment to normal life and adding levels of fear and uncertainty.

So, what can we do to retain or renew our resilience?

I’ve tried to keep perspective and challenge fear inducing messages.

Daily walks have been important for physical and mental health and have also meant that I’ve guarded against having to relearn basic mobility skills or redevelop the confidence to get out independently again when things return to normal.

I also think having hope is important, having plans for when this is all over, buying tickets for shows, planning a family get together or meeting with friends.

Personally, I find sport great for building resilience, keeping running when you really want to stop, not being disheartened by the disappointment of a defeat or an unlucky net chord in tennis or a bad decision from an official.

Sometimes we face bigger challenges: ill health, loss of loved ones, struggles to make ends meet or to find employment. It can feel that nothing has fully prepared us for these and yet learnt resilience can still help. Perhaps a capacity to accept our vulnerability can help the development of resilience, freeing us to accept support where we need it.

A young child sitting at a table drawing.

Nystagmus isn’t catching – tell your friends!

The little girl in the picture has nystagmus. She is enjoying some drawing at a Nystagmus Network event some years ago. At the time she had just started school and thought it would help children like her if people understood nystagmus better. One of the first things she wanted other children to know was that nystagmus isn’t catching. She was worried that people wouldn’t want to be her friend.

She started to write a diary about her experiences at home and at school. Each diary entry began in the same way: “When I was a baby a doctor told my mum I was blind. I wasn’t blind, of course, but I did have nystagmus. Now I’m seven and I’ve still got nystagmus. This is how I see the world through wobbly eyes …” The diary was published in the Nystagmus Network newsletter, Focus.

That diary became the basis for the Nystagmus Network booklet for young children, ‘Wobbly Eyes’. This digital publication explains nystagmus in child-friendly language and gives children the words to talk about it themselves. It remains our most frequently downloaded information document.

Extract from the original diary published in FOCUS in September 1999

Yesterday at school some of the children in my class had to have a medical. They called my name out, so I had to go. First they tested our eyesight. I thought that was a bit silly, because they know I’ve got nystagmus. I could only see the big ‘H’ because the nurse was holding the chart too far away.

She asked me if I wore glasses and I said no. I was about to explain about my nystagmus, but she wasn’t listening. She just went on to the next person.

They gave me a letter to take home to my mum. She was cross, because the letter told her she had to take me to the optician straight away. I heard mum talking on the phone to the school nurse later on. She was still cross. She told them that Mr Calver* tests my eyes and that the school nurse doesn’t need to. I don’t think the school nurse really understands about nystagmus. But Mr Calver does, because he’s very clever.

*David Calver was at the time Consultant Paediatric Ophthalmologist at Guy’s and St Thomas’s Hospital.

Download your copy of Wobbly Eyes here

The front cover of the Nystagmus Network booklet for children, Wobbly Eyes

People’s perceptions of nystagmus and the impact of Covid-19

In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published.

The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually does.

It seems that members of the public had a greater understanding of challenges faced by individuals with nystagmus if they had met someone with nystagmus or if they had even heard of the condition.

This suggests that greater public awareness of the condition could be achieved through increased exposure of the condition through media and other online methods of promotion.

What this tells us, is that raising awareness of nystagmus is beneficial for everyone.

Future work
It is thought that further qualitative questionnaire studies regarding nystagmus could be carried out to identify specific issues that individuals with nystagmus have faced during lockdown and whether these are common to other disorders of vision.

Read the full summary of the survey results online here

Joel’s nystagmus story

For Nystagmus Awareness Day 2022 we are delighted to share Joel’s nystagmus story, in his own words:

What is nystagmus?

Not many people know what nystagmus is. The best way to describe it is movement of the eye without the will of the mind. The condition is characterised by uncontrollable eye movements from side to side, up and down, or round and round. The degree to which those eye movements affect your sight and quality of life varies from person to person. Everyone agrees – it’s a very difficult condition to describe.

I was born with nystagmus. I can see all around me, but not the detail and often not in focus. When I was younger, nystagmus was about second guessing. It was looking five times to focus when the average person could look just once. However, as my brain was having to constantly make the best guess about what I could see – the smallest visual clue was often enough to determine what I was looking at. As I’ve got older, I’ve learnt to see with my brain before my eyes, and my nystagmus has become less noticeable.

Living with nystagmus

Nowadays, I’m not embarrassed by my ‘dancing eyes’, but when I was younger it was very different. I was sometimes not allowed into clubs or pubs due to the bouncers thinking I was on drugs. And trying to make new friends when people notice ‘that weird thing your eyes do…’ is the icebreaker that I never wanted. I would also struggle to see facial cues or other gestures people were making. As a teenager I learnt that squinting at girls to see what (if any) facial cues they might be giving you is never attractive!

Although I’ve adapted to my disability, it still affects my day-to-day life. I can’t drive. I can tell when a car is coming, but I won’t catch the registration number.

I struggle to recognise faces from a distance (it doesn’t have to be that far); this creates a daily dilemma. Do I risk unintentionally blanking someone that I know or risk staring at someone I don’t know (and only realising this at the last moment)? My mood dictates how I manage this conundrum. If I’m feeling introverted, I look downwards when I walk and glance upwards at the last moment to see if I recognise the person. If I’m feeling sociable, I will say hello to absolutely everyone (and potentially make some new friends along the way!)

At work, I need to sit close to any presentations being made by colleagues. Focusing on text on the screen can be tiring after a while so I have a large monitor and take regular screen breaks. My nystagmus is also a meter for how tired and stressed I am. When I’m relaxed the rapid eye movement reduces.

What I’ve gained from nystagmus

Nystagmus is a weakness that became my biggest strength. It has taught me how to overcome the odds and find creative and inventive ways to make the seemingly impossible, possible.

My ability to see things differently helped me secure my first professional job: an advertising creative at Saatchi and Saatchi. And it has helped me in many different ways since. From writing comedy sketches for BBC radio to leading an award-winning Her Majesty’s Government programme to help more disabled people enter political life.

Nystagmus has meant I’ve always had to work 10 times harder than most other people; it’s made me who I am today. I was the first person in my family to attend university and secure a leadership position in a white-collar job.

Nystagmus has also created a magical resolve within me that ensures I never stop trying. I submitted over 250 unsuccessful applications before getting my first real job opportunity. But when people have given me opportunities, the work ethic instilled into me by nystagmus has meant I’ve always repaid their faith. And that has led to many amazing adventures in the UK, Canada, Brazil, Indonesia and Azerbaijan.

Nystagmus is ‘normal’ for me, so I’ve never written about it before. However, my three-year-old daughter was also born with nystagmus and I know the challenges and discrimination she might face. If I can help increase awareness of the condition, perhaps her journey will be a little less bumpy in the years ahead.

Thank you to Joel and his Mum, Joan for sharing this personal nystagmus story

To share your nystagmus story, please contact us

Two knitted nystagmus mascots wearing silver grey and purple clothes to mark the Platinum Jubilee, stand in a garden.

Join us for the big lunch

As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch.

Let’s all get together!

Whether you’re lunching at home in the garden, in your street or a local park, whether it’s a barbecue, a sharing platter or cucumber sandwiches and Jemma’s lovely Platinum Pudding, please share your photos with us and join the rest of the nystagmus community for lunch.

We’ll share your photos on our Facebook page to show that we all belong to the nystagmus community.

Find out more about the Platinum Jubilee here

Mascots available to order here

An Illustration of a vwery colourful friendly monster. He is green. He wears pink polka dot pyjamas and fluffy red slippers.

Kevin the Monster comes to life

Did you know that a very special group of young people with nystagmus have helped children’s author, Tim Pearce create a character for his brand new book, Secret Agent Striker Strikes Back?

Tim was kind enough to run a children’s story writing workshop for us last year. Tim and the children created a story and a brand new character together. That colourful character was Kevin the Monster. Here’s how it happened, by Tim:

“In May 2021, I had the pleasure of sitting down with an amazing charity called Nystagmus Network for a ‘meet the author’ event.

The love and positivity the children displayed throughout the story showed that we should treat everyone the same, regardless of differences. I am proud to have had the opportunity to have written this story with them and would like to say a massive thank you to Ameerah, Oscar, Hannah, Josh and Abbie, along with the other children who contributed to the story.” – Tim Pearce

Kevin has been brought to life from the children’s imaginations by Tim’s regular illustrator, Jodie Dowie.

Here’s what we think of Kevin.

“Very colourful, fun rainbow horns. It’s great to see our ideas put together.“ – Ameerah

“Please thank Jodie for this fantastic illustration! The colours are so vibrant and eye catching and I love the cave with all the little details. He looks actually very friendly and approachable in his eyes despite his giant size and appearance. Perfect!” – Karen Chu, Trustee

“Oh, my goodness the slippers!!! Kevin is truly amazing. The children will LOVE him!” Sue, Nystagmus Network

The book costs £7.99, includes the above image of Kevin the monster and an acknowledgement of the children from Tim and is in nystagmus friendly large print.

Order Secret Agent Striker Strikes Back from Smile Amazon here

Raindrops on World Book Day

In celebration of World Book Day 2022, we are pleased to announce the publication of the Raindrops story book.

This digital publication includes the winning stories, inspired by raindrops, written by Annabelle, Eliana, Harry and Daria. Read what our esteemed judges thought of their Nystagmus Awareness Day 2021 competition entries and the drawings submitted by Nerea, Myles, Alishba and Luca.

Download your free copy of the Raindrops story book here

With thanks to all the children who took part in the competition, to Josh for the inspiration, to our judges: Tim Pearce, Katherine Mengardon and Nadine Neckles, to children’s authors, Tim Pearce, Helen Rutter and Claire Alexander for their inspirational writing workshops, to our generous sponsors for the prizes and to Nick for designing the book for us.

Edwin smiles for the camera. He is wearing dark glasses, leather gloves and a bandana.

How amazing is Edwin?

I was born with CN and for the most part consider myself to be lucky compared to many in our group.

Service to others has been a significant part of my life.

Recently, as Chief of Staff of my state’s second largest agency I was responsible for leading the development of a comprehensive employee wellness program. This program has become a model for other agencies like mine nationwide.

In addition, I lead the effort to develop a CQI process that saved state taxpayers millions of dollars.

Our agency’s employees’ commitment to helping others resulted in raising hundreds of thousands of dollars for Special Olympics athletes during my tenure.

One of my biggest joys is riding my Harley Davidson.

Our challenge is to not accept the limitations others set for us, and strive to be the best we can be!

Share your amazing nystagmus success story with us at [email protected]

Wyatt smiles for the camera. He is wearing headphones and holding a games console.

How amazing is Wyatt?

Wyatt has always had this positive outlook. He is determined, smart, and gives EVERYTHING his all!

When he was 4 months old he was diagnosed with Nystagmus. We as parents were told that he would never ride a bike, play sports, or even read a book. Everything he would do would be a challenge for him.

With that, my husband and I encouraged Wyatt. Whatever his passion he always tried. He always gave it 110% and succeeded!

Wyatt is 9 now. He loves his bike, rollerblades, driving the go-kart and his FAVOURITE thing to do is sit down and read a good book!

Words cannot describe how great Wyatt is doing! I can’t wait to see what the future holds for him!