Laura Grace Simpkins discusses visual disturbances and the metaphors we use to describe them.

I first noticed it when I was very small, maybe around the age of four or five. I thought it was fairies, initially; golden swirls arranged out of small, staccato dots which pulsated in front of my eyes when I closed them. I’d spend hours entranced in my cosy bedroom, gazing endlessly at the ceiling where they put on a show, dancing spectacularly for an enraptured (and easily impressed) audience of one. I have a strong memory of when the display became too much for me: I got spooked and crawled into my parents’ room as the sun rose. Peeking out from underneath their bed cover, I was shocked to discover that the fairies had followed behind me and were posing, strutting; delicate, bioluminescent bits of dust, showing off on top of the mirror.

As I’m typing this, there’s a streaky, translucent matrix which crackles and pops and shimmers in between me and the screen. This design—more silvery than gold, more rays than swirls—intersects my vision at different angles; mostly at forty-five and one-hundred-and-thirty-five degrees. Big, misty smears and smaller, circly blobs meander over and under the lines slowly, almost leisurely, as if out for a casual stroll. It gets like this when I’m staring at a backlit device or out towards unbroken blocks of colour, like the white walls of my room and the blue sky over the lake I often walk to. There’s no escaping it. No turn off switch to flick when I instruct my laptop to shut down. It’s only more pronounced when it’s dark.

The world, in my eyes, is unstable and insecure, constantly on the go. It’s made intangible, abstract concepts easier to grasp though—like those in physics, for example. When my peers were flummoxed by subatomic particles I—with my continually fluctuating vision, comprised of sparks and quarks and electrons—immediately understood. The patterns I observe have an inherent randomness, are a mix of unpredictable signals. They’re the same as the static which could be observed, the hiss or shh which could be heard, between channels on defunct analogue televisions. Eyes open or closed, my vision’s 1% cosmic background radiation. Perhaps I’m just an out-of-tune antenna, I used to think, can’t process the signal so the picture isn’t clear.

Image by Laura Grace Simpkins

What is visual snow?

Visual snow is characterised by a continuous ‘snow-like’ disturbance across the entire visual field, which flickers and flashes. Other symptoms include seeing ‘floaters’ and coloured swirls, being light-sensitive, having impaired night vision, and perceiving objects which are no longer there. It tends to last a lifetime.

Visual snow has long been dismissed by the medical community. ‘There is not an NHS page for visual snow because visual snow doesn’t exist,’ Professor Peter Goadsby, a director of the Wellcome Trust’s National Institute for Health Research and one of the few experts on the condition working in the UK, remarked in 2016 (Williams 2016). ‘It currently isn’t recognised within medicine. When I first proposed it as a condition worth researching, colleagues thought that I was completely barking crazy.’ There’s been more research on visual snow, now categorised as a relatively rare neurological phenomenon, since (a study from 2020 indicated that approximately 2% of the UK population has it) (Kondziella 2020, 764). This medical interest has initiated a great deal of coverage by a variety of mainstream publications: the BBC even featured visual snow on an ‘Inside Health’ episode, broadcast on BBC Radio 4.

Originally thought to be a form of migraine, research has determined visual snow is a distinct condition (Schankin 2014). Its cause is, thus far, undetermined. Proposals for its aetiology encompass legal and illegal drug use, autoimmune diseases, Lyme disease, and hormonal imbalance (Williams 2016). Medications have been trialled to treat or alleviate symptoms in the worst cases, although experiments with lamotrigine, acetazolamide, and verapamil remain speculative (Bou Ghannam and Pelak 2017, 10). A study which excites me (with my comorbidities of bipolar and sensory processing disorders) hypothesises visual snow might be triggered by excessive excitability of neurones in the ‘right lingual gyrus’ and ‘left cerebellar anterior lobe of the brain’ (Schankin 2014, 957). This theory—of the hyperactive, hypersensitive brain—is corroborated by Daniel Kondziella as he reviews his research: ‘Our visual impressions are edited, smoothed and adjusted, and visual noise is usually cancelled out; however, some people are so perceptive that they become aware of the noise’ (Wood 2020, 183).

VSS online communities

The recent medical and media enthusiasm for visual snow has seen eyes roll in the online communities which have been campaigning about the condition (what they acronymise to VSS, the last ‘s’ standing for ‘syndrome’ years prior to any institutional officialising) on social media platforms and independent charitable organisations, such as the Facebook page ‘Visual Snow Support Group’ and the website Visual Snow Initiative, for years. I was captivated by the ‘golden swirls’ I admired as a child, as I continue to be by the ‘streaky, translucent matrix’ I see before me now. Visual snow has never negatively impacted my life—I’ve not thought to ask an optician about it or shared my experience with anyone, before my partner referred to it by name. But for some, visual snow is debilitating. It’s so disabling to them that it’s become a ‘disease’ to ‘cure’. ‘Our goal is to help those with Visual Snow live and enjoy their life without fear’ and ‘Reversing Visual Snow Naturally: The Raw Vegan Plant-Based Detoxification & Regeneration Workbook’ are just two examples of the increasingly medicalised language on the website of VSS charities and the titles of dubious-looking self-help guides on Amazon.

‘It turned out there is an entire community on the internet, consisting largely of people with self-diagnosed VSS,’ writes Kondziella, inadvertently reaffirming medicine’s ignorance of, and lack of respect for, the first-hand experience, anecdotal evidence, and 2.0 vocabulary of those online with merely ‘self-diagnosed’ symptoms (Wood 2020, 183). ‘Given the tremendous interest on social networks, I was wondering how frequent this syndrome was and how it had escaped medical attention until very recently,’ he continues.

In Timaeus, Plato argues that ‘visual fire’ burns out of the eyes, combining with daylight to produce sight: ‘So when there is daylight round the visual stream, it falls on like and coalesces with it, forming a single uniform body in the line of sight, along which the stream from within strikes the external object’ (Plato and Lee 1977, 62). Plato’s extramissive fire was, eventually, challenged by his pupil Aristotle’s intramissive theory of sight, anticipating how we conceptualise vision today. The ‘fire’ Plato had described was later rearticulated as the presence of ‘deformation phosphenes’—sensations of light when the eyeball is put under pressure. ‘Inevitably, the ancients [here, Plato] struggled with understanding objective optical processes at the same time that they sought to explain the subjective visual phenomena they perceived,’ writes Geoffrey D. Schott, somewhat patronisingly (Schott 2019, 126). Visual snow takes after its elemental opposite then, in being misinterpreted, trivialised, and dismissed. Like Plato, those with visual snow have been patronised: it is they who ‘struggle’ and have it wrong; their phenomenological descriptions are of objects only in their heads. Fire and snow don’t exist, they were told.

Individuals, like myself, who have other under-the-radar neurological, sensory, or mental experiences, like ASMR (autonomous sensory meridian response) and maladaptive daydreaming, will recognise that medicine is often forced into playing catch-up with the internet—until it claims it has discovered, labelled, validated, made real such conditions by its methods, and its methods alone.

Image by Laura Grace Simpkins

Snow is a metaphor

There’s a reason why my description at the outset of this essay is as long as it is. My lengthy, ostentatious, self-indulgent narration is included here to make a wider point. The skills required to identify visual phenomena are not the same as those of physical medicine, where we look and point, or cut open or zoom in, to look and point. We have to learn to describe what we can’t all see. I think we need the metaphor.

‘A metaphor is the application of a noun which properly applies to something else,’ writes Aristotle in Poetics (Aristotle and Heath 1996, 34). Although easily relegated to the realms of the flowery, the grandiose, and the superfluous, metaphors are fundamental to our interaction with the world. The lexicon of visual snow (before its translation into medical terminology), is reliant on metaphors. In this essay alone, I have likened my experience to fairies and television. Lauren Killough uses ‘eyes’ and ‘clouds’ in her blog (Killough 2018). The very name of the condition, coined collectively by the internet, is itself metaphorical—visual ‘snow’ (though how normal snow isn’t also ‘visual’ I’m not quite sure).

The current prognosis of the metaphor in medicine gives it a 50% survival rate. The most cited argument against the medical metaphor is Susan Sontag’s. In her extraordinary essay, Illness as Metaphor, Sontag demands liberation from the ‘metaphors of illness’, dedicating her enquiry to the claim that attending to literal illnesses as metaphors avoids, delays, or even prohibits, literal treatment (Sontag 1978, 4). Her focus is on the common metaphors we use to think and talk about medicine, those which are regularly militarised: the patient a ‘fighter’ ‘battling’ an illness they have been ‘invaded’ by. But metaphors can be helpful too, providing patients with familiar words for the otherwise unknown or unimaginable. ‘Metaphors may be as necessary to illness as they are to literature, as comforting to the patient as his own bathrobe and slippers,’ comments Anatole Broyard, on Sontag’s essay (Broyard 1992, 18). Yet Sontag is not suggesting we rid ourselves of the metaphor altogether (her critics often misinterpret her on this), instead, she says there are some we might choose to retire.

Visual snow doesn’t work like normal snow. There’s no surface for it to land on; nothing for it to stick to, melt, make a mess. I have to use metaphors as the landing surface: write ‘fairies’, ‘television’, ‘static’, and even ‘subatomic particles’ to make it settle.

The metaphor is useful to me here for two reasons. The first is because it gets us closer to the ‘object’ of visual snow. In Essayism, Brian Dillon criticises ‘philosophies of the object without objects, a materiality without materials’ (object-orientated ontology and new materialism respectively), concluding:

‘Nowadays I would much rather read the plainest—they are hardly ever plain, not really—description of a thing than its most erudite or ‘radical’ theorization, in which the thing vanishes. Except, except (of course) I also want metaphors, by which the object may be quite occluded in comparison with something else, anything else’ (Dillon 2017, 80).

Dillon reinstates the relevancy of the metaphor (somehow it went out of fashion, replaced by the object-oriented ontologist’s declarations: ‘A cross section of a cinderblock is not a cinderblock. A finger’s impression of a cinderblock is not a cinderblock. A butterfly’s touch on a cinderblock is not a cinderblock’), arguing that it gets us closer to the object (Morton 2013, 50). This, I agree with. However, I think that the metaphor’s main strength is that it makes us realise that while it gets us close to the object, it will never get us close enough. The reflexive form of the metaphor is important. By saying that an object is always another—that a thing is always some-thing-else, the metaphor is language admitting it will never capture an object fully, especially a non-literal object, an inherently metaphorical condition, like visual snow. Neither the object-oriented ontologist, with all their unnecessary theorising, nor the neurologist’s specialised and inaccessible jargon, will take us there. Instead, we can only get closer to our perception of visual snow.

I’ve written my own description here, with metaphors which work for me, to give an impression of what I instinctively, unthinkingly, ignore on a daily basis—what I see when my eyes are open or closed—to illustrate that the metaphor is equal to medicine when it comes to knowing visual snow. Continuing to use metaphors, even if they are as silly as ‘bioluminescent bits of dust, showing off on top of a mirror’, is also, coincidently, how we stop the inevitable institutional attempt to appropriate visual snow, whilst staying sensitive to its heterogenous codification as ‘condition’, ‘phenomenon’, ‘syndrome’, and ‘disease’. Perhaps it is problematic of me to advocate for the aestheticisation of an experience which others attest is debilitating and disabling, life-ruining. I’ll admit I am entranced, ‘intoxicated’ as Broyard puts it, ‘by my illness’ (Broyard 1992, 5). Even Sontag writes that illness is a kind of ‘interior décor of the body’ (Sontag 1978, 28). Visual snow, though not an ‘illness’ to me, wallpapers my vision with silvery rays and carpets it in golden swirls, so I see what she’s saying. Literally.

Laura Grace Simpkins is a writer and illustrator whose personal essays describe her mental health using colours, shapes, and patterns. Simpkins is currently collaborating with the Wellcome Collection on a research project about medication and the environment, and is developing her first book, Lithification. Her website is at lauragsimpkins.com.

References

Aristotle., and Malcolm Heath. Poetics. Reprint London; New York: Penguin Books, 1996.

Bou Ghannam, A., and Victoria S. Pelak. 2017. ‘Visual Snow: a Potential Cortical Hyperexcitability Syndrome.’ Current Treatment Options in Neurology 19, no. 9 (March): doi: 10.1007/s11940-017-0448-3.

Broyard, A. 1992. Intoxicated by My Illness: And Other Writings on Life and Death. New York: Ballantine Books.

Dillon, B. 2017. Essayism. Reprint London: Fitzcarraldo Editions, 2020.

Killough, L. 2018. ‘The Questions I Have After Being Diagnosed With a Rare Disorder’ The Mighty, January 08, 2018. https://themighty.com/2018/01/what-it-feels-like-to-have-visual-snow-syndrome/.

Kondziella, D., Olsen, M. H., and Jens P. Dreier. 2020. ‘Prevalence of visual snow syndrome in the UK.’ European Journal of Neurology 27, no. 5 (May). doi:10.1111/ene.14150.

Morton, T. 2013. Realist Magic: Objects, Ontology, Causality. Michigan: Open Humanities Press.

Plato., and Desmond Lee. ‘Timaeus.’ Timaeus and Critias. Reprint London; New York: Penguin Books, 1977.

Schankin, C. J. 2014. ‘The Relation Between Migraine, Typical Migraine Aura and “Visual Snow.’ The Journal of Head and Face Pain, 54, no 6. (May). doi: 10.1111/head.12378.

Schott, G. D. 2019. ‘Exploring Extramission: Plato’s Intraocular “Fire” Revisited.’ Perception. 48, no. 12 (Month). doi: 10.1177/0301006619884208.

Sontag, S. 1978. ‘Illness as Metaphor.’ Illness as Metaphor and AIDS and its Metaphors. Reprint London: Penguin, 2009.

Williams, L. 2016. ‘The mysterious eye condition of ‘visual snow.’ The Guardian. August 08, 2016. https://www.theguardian.com/lifeandstyle/2016/aug/08/visual-snow-debilitating-eye-condition-doesnt-exist.

Wood, H. 2020. ‘Shedding new light on visual snow syndrome.’ Nature Reviews Neurology. 16 (April). doi 10.1038/s41582-020-0324-8.

 

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