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Still or Sparkling?

One of the most common questions people ask me is: "Your eyes are moving all the time, so do you see the world moving as well?" For me, the answer is generally no. The world around me is still most of the time. And from talking with others that seems to be largely true for most of us who develop nystagmus in infancy. (It's quite a different story if nystagmus starts when you're older, so-called late onset or "acquired" nystagmus).

I said the world is generally stable for me, but there are exceptions. When I'm tired, struggling to see in bad light, or looking away from my null zone (I'll explain the null later) for example. Then the world does temporarily move. And a wobbly world is very confusing. A moving world makes it very difficult to see. It's a difficult sensation to describe. Sometimes, the whole world seems to move. At other times, an object or person will appear to leap, jump, sparkle or flicker in and out of view.

Most other people with early onset nystagmus say they experience the world moving (oscillopsia is the medical word for this phenomenon) occasionally too. Some see the world shaking more often than others, but it's rarely if ever a permanent sensation (unless nystagmus starts in adulthood as mentioned above).

That said, it seems probable that our brains do struggle to give us a fixed image when our eyes are constantly moving. A lot of us find that things aren't quite where we expect them to be. This may explain why we're generally not much good at catching things, are probably clumsier than average and frequently accidentally bump into door-frames, furniture and even people.

But we don't yet have a way of measuring whether and how our moving eyes might make us clumsier than average. And there are other odd things linked to nystagmus - such as poor depth perception -- which may explain why we're more likely to trip over steps, inadvertently knock over a glass or hit the wrong keys on a keyboard.

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