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A New Chapter

I first became aware of CVIs years ago when reading an article by Janet Harwood. I sat with a pen ticking off the similarities between nystagmus and CVIs. Tiredness, for instance. It is impossible to exaggerate just how draining it is to study, work or socialise in a world where most people don't have to make an effort to see. And then there's the everyday struggle to explain what we can and can't see in comparison with what most of the rest of you see.

It's worth pointing out that we don't automatically know how our vision differs from yours. Generally, it's not until the age of eight or nine that the truth gradually begins to dawn. And it's not nice when you realise that you're never going to be any good at football and will probably not be able to drive. And people might be surprised at how young we start quietly worrying about whether we'll ever get a job or find a partner.

On top of all this it doesn't help if a well meaning optometrist tells us we have near perfect visual acuity, or visual acuity that's better than most others with nystagmus or CVIs. Because we probably still struggle with moving objects, or have a limited field of vision, or what we can see constantly changes, or we have to put up with one or more of the other strange phenomena that are so hard to understand.

But, as I said earlier, I don't want to leave parents who read this alarmed that nystagmus or CVIs are the end of the world. There is no need for nystagmus or CVIs to ruin your life. It's true that there are no magical medical solutions. But by understanding how nystagmus and CVIs affect us and - crucially - talking about them, we can learn to live with them.

Don't just take my word for it, though. Talk to others or read what others have written about their experiences. For example, a book by Claire Entwistle , "What seems to be the trouble?", is about more than nystagmus, but has a lot to say about seeing through flickering eyes and the daily reality of living with a null zone. Claire's book is funny and uplifting and I urge any parent of a child with nystagmus to read it.

https://www.amazon.com/What-Seems-Be-Trouble-treatment-ebook/dp/B086PYR5DJ

There are also stories about Northwick, a bear who lives with Frank and his family. Northwick and Frank both have nystagmus. You can find out more here:

https://www.northwickbear.com/

John Sanders 2021

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