Sometimes it's better to light a flamethrower than curse the darkness

So here's the tangential stuff I just mentioned.


The article links to the Cerebral Visual Impairment Scotland website, and for all my eagerness not to claim I have something I don't, I also found a series of blog posts on nystagmus, which I do have. This is the thing that makes my eyes jump back and forth, I've answered some questions about it here a while ago. The webpage in general, including the nystagmus series, are very oriented at the concerned parents of children with these kinds of conditions but it was interesting for me to read.

I think because I grew up so isolated and uninformed about my eye conditions (despite yearly trips to the Mayo Clinic, I to this day have no idea what those were for!) it hasn't really occurred to me to read up much on them as an adult. I think another reason for this is that both my eye conditions are things I was born with that aren't fixable or even degenerative; they're just there and they stay there and there isn't much doctors or anyone can do about them.So it's kind of unusual and it feels good to read stuff about a part of my life that I don't actually know a lot about and don't hear about because I don't know anyone else who has it. Stuff like

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.

There's someone else who's as tired of answering "how far/how much can you see?" as I am!

When I'm tired, struggling to see in bad light...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.

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.

I find this really interesting; that it's not actually well understood how nystagmus affects things like coordination. I also always assumed (guessing from first principles) that I have poor depth perception because one of my eyes is so much worse than the other -- like twice as bad -- but I guess it doesn't surprise me that it could be directly due to the nystagmus.

Lots of things can trigger these changes in our involuntary eye movements. The commonly cited ones include: tiredness, illness, worry, anxiety,apprehension, hunger, embarrassment, fear, emotional upset (death of a loved one or relationship difficulties), stress and hormonal changes (particularly in teenage years). Environmental factors such as poor lighting can increase nystagmus eye movements too.

Such a long list! I knew about tiredness, illness (my mom always said she could tell I was getting a cold as a kid before I knew it myself, based on my eyes) and stress (worsening nystagmus feels a lot like my migraine auras, and my migraines are also triggered by stress, so it's a lot of fun trying to guess which is which because the best methods of dealing with each can be pretty different). But things like worry, hunger, embarrassment, fear, worry...this might make a lot of sense out of a lot of things about me...

Whatever the cause or trigger, the upshot is the same: we have good days and bad days in terms of how we see. We can even have good and bad minutes, hours, weeks or even months (for example if we face long term anxiety about issues at work).

I always feel weird telling people my eyes have good and bad days, people aren't used to it, and it was just so validating to read this. I had a bad few weeks, bad month or so, I don't know, I might still be having it lately. Day after day where I can't look at my phone at all by the time I'm done with work, which is boring and isolating me when all my friends live there, so it's a huge bummer at a time when my mental health has already been so bad. I do sometimes think i should get better with screenreaders, which I now only use in a supplementary kind of way, for the bad days but it's so much work on its own, it's hard to tell if it's worth it.

Nystagmus also affects how long it takes us to see things. Put simply we need more time to see things than people with normal vision. In other words, we see slowly.

I love this. I used "I see slowly" just now in a meeting, I think it has a chance of explaining this thing which is so important to me: I think the most severe dimension of my impairment isn't that I'm effectively really short-sighted, it's this visual processing delay so even what I "can" "see" isn't actually always useful to me.

I said that tiredness can make nystagmus worse. It's also worth remembering that having nystagmus is tiring in itself. I'm not aware of any scientific research into how tiring it is to have nystagmus, but from personal experience and listening to others I'm pretty sure that many of us with the condition do find it pretty fatiguing. I realise we're not unique in that respect and acknowledge that the same is true of many disabilities. And I would argue that the additional load of having any disability is often not fully understood let alone recognised, especially in education and the workplace.... But technology doesn't give us perfect vision and comes with a price - not just financial either. Using LVAs (low vision aids) is often tiring and can't be equated with someone who has ordinary vision doing the same task. Just try scanning a spreadsheet with a magnifier if you don't believe me... And while on the subject of technology, I'm not aware of any simulation spectacles (sim specs) that really show what it's like to see through nystagmus eyes.

I've talked before about how much I detest simspecs, because they evoke fear and pity much more reliably than empathy, and empathy from sighted people isn’t actually necessary or sufficient to improve things for blind people: we should be listened to as the experts we are on our own conditions; anything else is like those times men pretend to be women online or white people pretend to be Black or whatever and then write articles about how much more terribly they’re treated than what they’re used to. Meanwhile loads of Black people/women/blind people/etc. are rightly aggravated that they’ve been saying these same sorts of things (and more nuanced things the people in relative privilege didn’t pick up on in their temporary experiement) all along without getting as much attention for it.

But anyway, I think another one of the reasons I hate simspecs is that they don’t represent what I find most impairing about my condition, which like I said isn’t “how much I can see” but how slow and tiring it is."