Neil sits on a bench.

Nystagmus in lockdown

In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person.

I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told.

Basically, I’m extremely short sighted and on a good day (with the correct lighting) I can clearly recognise a person’s facial features and movements from about two feet away. Any further and people just become a blurry shape. I also have very limited depth perception so cannot see stairs, pavement edges or judge distances.

When the pandemic started in early March, I began to feel more anxious about catching the virus myself and passing it to my fiancee, who had just come out of hospital. At this stage I wasn’t really thinking about how it would affect me from my disability standpoint.

Each day I was travelling on the train to work. I was getting more and more worried about taking the virus home with me. On 18 March it was announced that schools would be closing and all staff would be working from home. That announcement was such a huge relief for me; my fiancee was still recovering and the thought of her or the kids catching this virus terrified me.

A few days later I was called by work and advised that we would each be working a day in school on a rota basis, as our school would be providing childcare provision for key workers.

I can’t describe the sheer panic that I felt during that phone call. By this time, we had isolated ourselves as a family and were happy to live that way for the foreseeable future, risk free. Now I was faced with the prospect of venturing out of the house. This is the first time I can recall thinking about how I was going to cope without being able to see other people clearly.

The first journey was nerve racking, to say the least. However, when the bus pulled in, I did feel a small sense of accomplishment. The train journey home was helped by the fact that I was the only person travelling in a carriage, so my anxiety about being close to others didn’t really come into play.

As the weeks have gone by my anxiety levels have diminished. I certainly feel a little braver when I leave the house for work each time. But those anxieties never really leave you.

The next big issue for me was leaving the house for shopping. The first few weeks of lockdown, our daughter was happy enough to pop to the local shop at quiet times for the essentials. We knew this would have to change as we were slowly eating our way through the supplies in our chest freezer. This is when my second major pang of anxiety kicked in. How can I maintain a social distance from others when I can’t see them clearly and have no idea how close they are to me?

My fiancee and daughter went shopping a few times to quieter supermarkets, but I felt more and more guilty that I wasn’t able to assist with this. So I made the stubborn decision. I was going to brave a walk across the road to the shop on my own.

My fiancee is so supportive of me and knows that when I’ve got my “I’m doing this for my own self confidence!” head on, its best to leave me to it. So I arrived at the front of the store, disabled lanyard on, white symbol cane in my hand. I could make out a massive queue of people stretching around the corner and had no idea of where to go / what to do. The staff there are extremely helpful, but even so I came close to a few people and was told in no uncertain terms I was too close and what was I thinking of. It was a nerve-racking experience.

I’ve always relied on being able to pick items up, check labels to ensure I’m buying the right thing. This was now not allowed. I opted for the easy way out that day and picked up a few things I already knew the locations of. Thank goodness they didn’t change the layout that day.

When I got to the till I started to panic again. What do I do? Where do I stand? Then I heard a familiar voice call my name. It was someone I knew. I was saved! Since that day I’ve been shopping with the family on numerous occasions, but I always feel more of a hindrance than a help, because I can’t social distance. I’ve raised many an angry eyebrow by nearly bumping into people in shop doorways and aisles.

COVID-19 has presented us all with so many life-changing challenges and experiences and I hope I’ve been able to give you a small insight (no pun intended) into what it’s like for a person with a visual impairment.

I would encourage everyone to share their experiences during this pandemic, because by sharing we are hopefully helping others to understand and make life that little bit easier for people who have found themselves less able to be self-reliant over the past few months.

Stay safe everyone!

Sue with knitted mascots.

Sue’s still knitting!

From now until 26 May, this is Sue’s daily schedule:

45 minutes yoga

8 hours working at the Nystagmus Network

1 hour walking her dogs

Then carry on with her Two Point Six Challenge for the Nystagmus Network: knitting 26 mascots by 26 May.

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

2 knitted mascots.

Sue’s Two Point Six Challenge

Sunday 26 April 2020 was to have been the date of the London Marathon with runners raising £millions for UK charities.

The Nystagmus Network’s runner, Adam, is still training to run in the postponed race in October.

Meanwhile, the organisers have launched The Two Point Six Challenge to help save the UK’s charities by giving us an opportunity to raise some funding to keep us going. It’s also completely safe and a bit of diversion during lockdown.

The Nystagmus Network’s Sue is amongst those taking up the challenge.

The idea is that you set yourself a target based around the numbers 2, 6, 2.6 or 26.

Sue says: “I can’t run a marathon, but I can knit!
Nystagmus Network mascots usually wear woolly hats and scarves, but for my 2.6 challenge I’m going to knit 26 mascots wearing running kit by 26 May. Please sponsor me if you can and wish me luck!”

You can sponsor Sue here.

To pre-order your nystagmus 2.6 challenge mascot, please CLICK HERE.

Nystagmus Awareness Day 2020

We may all be staying at home, but we can still mark national and international Nystagmus Awareness Day. Here are just some of the ways you can get involved.

How amazing are you?

In the run up to Nystagmus Awareness Day 2020, we are once again asking you to share your amazing nystagmus success stories. Not only do these stories help raise awareness of nystagmus, but they also bring hope to so many parents whose children have just been diagnosed. In previous years we’ve heard some truly amazing stories of success or achievement despite, or maybe even because of, having nystagmus. Let’s make 2020 even more amazing!

Email your amazing nystagmus stories, plus photo, please, to [email protected].

Our wobbly photography competition

We want to raise as much awareness of nystagmus as possible this year and make sure that everyone has a chance to take part, so we’re running our wobbly photography competition: The View From My Window

We know that lots of people who have nystagmus are also keen photographers. Whether you have nystagmus or not, whether you have the latest camera or just a phone, and wherever you are in the world, you can take part.

Details coming soon

Our wobbly Quiz

The Nystagmus Network is running a Virtual Quiz Night every Saturday at 7pm throughout lockdown. On Nystagmus Awareness Day, 20 June, the quiz promises to be our biggest and best yet. There are cash prizes for 1st, 2nd and 3rd places. So what are you waiting for? Get everyone signed up now!

Sign up for the quiz here

Nystagmus is 

Our fabulous new publication, Nystagmus is …, inspired by the wonderful Roger, will be launched on Nystagmus Awareness Day 2020. The booklet is full of contributions from people who have nystagmus, describing how they feel about it and how it affects their lives. For the first time people can read what it’s really like to have nystagmus by the people who really know.

Nystagmus is … will be available FREE from our online shop on 20 June 2020, but you can pre-order your copy NOW. Simply email us at [email protected].

Home school for Nystagmus Awareness Day

We have loads of teaching and learning materials available to help mark Nystagmus Awareness Day. There are posters to colour, bunting to make, a PowerPoint presentation, a lesson plan and our booklet especially for children ‘Wobbly Eyes”.

Find your free to download materials here

Lockdown fundraisers

Lockdown doesn’t stop us! Don’t let it stop you! Especially not on Nystagmus Awareness Day!

Find out about our lockdown fundraisers here

Why do we need Nystagmus Awareness Day?

Here at the Nystagmus Network we raise awareness of the condition every single day of the year, because we believe that the more people who know about it the better. It means that adults and children who have nystagmus will get the help, support and services they need in education, employment, health, mobility and leisure and everyone affected will enjoy a better quality of life.

Holding a national and international Nystagmus Awareness Day serves as a reminder to everyone that we are here and our voices need to be heard. Every time you take part in Nystagmus Awareness Day or tell someone what you’re doing and why, that’s one more person who understands what nystagmus is.

Every pound you raise or donate helps the Nystagmus Network support our research teams across the UK to investigate this hugely complex condition, to find better diagnosis, treatments and continue to work towards prevention and cure.

Please take part in Nystagmus Awareness Day 2020

Thank you for your support

Nystagmus Network logo.

Lockdown fundraisers

Lockdown doesn’t stop us! Don’t let it stop you!

We’re still here supporting the 1 in 1,000 people who have congenital or acquired nystagmus, by phone, email and on social media, but we do need your support now more than ever before to carry on.

Release your inner fundraiser during lockdown

With marathons, 10k runs, sky dives and tough mudders all postponed for the summer, there’s still lots of opportunity to take part in virtual runs and challenges right now.

Stay active with a physical challenge

Make the most of your time outdoors (or inside!) with a fabulous fundraising challenge. Choose from Climb Everest, the Inca Trail, Team Gotham and many more.

Choose your challenge here

1. Sign yourself up

2. Set up your Justgiving page for sponsorship

3. Take part in your virtual challenge 

Run to your local landmark

The Local Landmarks Challenge is a solo, virtual run, around your local landmark. That could be anything from your local church, castle, park, statue or even post-box. You decide the distance.

Sign up for a virtual run here

Set up your Justgiving page here

Get sponsored for doing good

Are you walking someone’s dog, doing their shopping or collecting their medicine? That’s brilliant! Why not get sponsored for it? Set up a JustGiving page to get you started. 

Stay connected with your friends and family

Join our virtual Quiz Night. We’re running a fun Nystagmus Network virtual quiz night every Saturday at 7pm.

It’s a great way to get everyone together and there are cash prizes for the 1st, 2nd and 3rd placed players.

Sign up for the quiz here

Celebrate your birthday in lockdown with a birthday fundraiser.

Set up your Facebook fundraiser here

If all that’s just a too bit energetic, please consider making a donation to the Nystagmus Network

Why not donate what you would normally spend on travelling to work?

Donate your commute

Could you donate what you normally spend at the coffee shop?

Donate your coffee here

Think of the money you’re saving with all those nights in!

Donate the cost of a night out here

Stay safe and healthy everyone! Thank you so much for your support!