Doctors told my parents I had nystagmus when I was about one year old in the late 1950s. Since then, I have spent more than 25 years as a trustee or employee of the Nystagmus Network charity (https://nystagmusnetwork.org/) as well as working as a journalist, translator, supermarket trolley collector and cockle seller.
Thousands of people (mostly parents) asked me - and still ask even though I've largely retired -- what I see. I've also talked to hundreds of others with nystagmus and to most of the leading scientific and medical experts on nystagmus.
So I've spent a lot of time thinking about nystagmus. And in terms of what we see my headlines would be: it varies a lot from person to person; the world is stable (not moving) for most of us most of the time; and the impact of nystagmus on our vision - and our wider lives -- is more fascinating than simply how far we can or can't see. And one thing that's often overlooked: it's often very tiring having nystagmus.
For all its oddities and intricacies, though, most of us with nystagmus from infancy lead fairly ordinary, humdrum lives. So, if you're a parent or grandparent or other family member, please don't be alarmed by what you read below. To those of us with nystagmus, it's what we're used to.
I'll start with how much nystagmus can vary from one person to another. Even where nystagmus is the only diagnosed eye condition we have, how it affects our vision can differ dramatically. Let's take driving as an example. A minority of us can see well enough to drive legally in the UK. For most of us (including me), though, nystagmus means we cannot pass the driving test. Just to make things more confusing still, I know some who can legally drive, but have nonetheless decided they're not safe behind a wheel. More on why that might be later.
However, most of us have one or possibly more other eye conditions alongside nystagmus. These can include albinism, aniridia, cerebral vision impairments (CVIs), childhood cataracts, coloboma and many others including damage to the optic nerve. Once you have two or more eye conditions the impact on what you see inevitably tends to be greater. Sometimes it can be hard to disentangle their individual effects.
All these factors mean it's difficult to say exactly what a child with nystagmus will be able to see and how their vision will be affected. The good news is that, thanks to advances in medical science, doctors are now better able to give parents some idea of how nystagmus may affect an individual child's vision -- at least in terms of their visual acuity - in other words how clearly/far they can see.
Predicting how else nystagmus may affect vision is tricky as we can't even measure some of those impacts yet. Here we're talking about things like the null zone (how it affects the visual field for example), the impact of clutter and crowding, time to see, lighting and glare, contrast sensitivity, ability to scan and how we perceive movement among other factors.
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