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 cartoon image of a man made of marshmallow

Sometimes we all need more marshmallows

In her presentation for the Nystagmus Network virtual Open Day 2020, Alison Blackman QTVI will talk about resilience and how to boost it.

Resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison explains how to boost resilience in young people with nystagmus.

She talks about the need we all feel from time to time to have an extra layer of padding around us to keep us feeling confident and protected.

Find out how you can help a young person with nystagmus feel more like marshmallow man.

Register to see all Open Day presentations here