When I first realised we would be heading into a long period of self-isolation and lockdown, I wasn't really phased. In fact, I was quite excited about the prospect of spending endless days in my quiet, calm home oasis. My home is my safe place. A place where I can relax and escape from the daily struggles of fighting my way through the world with my complex visual issues. For the foreseeable future I wouldn't have to deal with the vision gremlins. Or so I thought.
Then it dawned on me. There are five other independent souls in this house who all have their own very individual needs. Two teenagers excited about the prospect of endless time on devices, a stressed husband who still has to work a 40 hour week amongst the chaos, a young at heart Grandma who is struggling to come to terms with the idea of being classed in the vulnerable age group and a very excited puppy who is thrilled to have everyone home to play with her. They are each trying to find their place in this new routine and are not really respecting my need for a safe place.
As my stress levels began to rise about what our world is currently facing, my ability to cope with mess, noise and clutter started to rapidly decrease. And I am ashamed to say that I quickly reached boiling point upon walking into the lounge to find card games strewn over the floor, DVD's and board games exploding out of the TV cabinet, dirty plates and glasses piled up on the coffee table, torn up cardboard boxes all over the place, the TV blaring, music playing on an abandoned iPhone and the kids trying to teach themselves German by listening to YouTube clips.
Now I realise we are in fact very fortunate in our lockdown environment. We have a large house, a big back yard and enough devices to keep us all entertained. My heart goes out to the families struggling through this challenging time in less than optimal situations and environments. And I also know that I am not alone in having a parental meltdown as we all grapple with what the future may hold.
But in all of this chaos, my visual needs stay the same and as I found myself quickly spiralling into a CVI meltdown, I realised I had to find a new smaller safe place within my original bigger safe place for the family to be able to survive this period of quarantine. So with my family all gaping at me, completely shocked by my fit of rage, I slunk off to my bedroom and tried to hide away from the world.
And as I lay there, curled up on my bed, slightly embarrassed at my complete over-reaction to what was in reality a pretty normal family scenario (especially in these abnormal times), I started to think of the many children out there with CVI, who are probably all struggling with similar experiences. But the main difference for me is that I am an adult and can understand what happened and why the clutter and noise caused me to spiral into a CVI meltdown. A child would not be able to understand this.
So a message to all you amazing parents of beautiful children who have CVI - your children are going to struggle. Although CVI is a condition that affects visual functioning, it also causes heightened emotional responses and sometimes challenging behaviours. We thrive on routine and when our routine changes, we find it hard to cope. Simple things like a favourite toy being moved to a different place may be all that is needed to send them spiralling into a CVI meltdown. Noise, clutter and mess is going to make them feel anxious and upset. Worry about what is going on in the world, is going to make it harder for them to deal with their visual difficulties. And they will sense your stress levels rising.
But you can help to make it easier for them. Be kind to yourself, be kind to your children and be patient with them when they have their meltdowns. But most importantly, help them to find a safe place in this uncertain world.
Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.
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