Whilst engaged in my customary practice of spectacularly losing in a game of Words with Friends recently, my eye was caught by their ‘word of the day’. I practically gasped in amazed fascination as I read, ‘orbisculate: to accidentally squirt juice and/or pulp from a grapefruit into one’s eye’. ‘Well I never’, I declared to myself aloud (I’m going to have to work on this lockdown habit of talking to myself, before I get dragged back to the office), ‘there’s actually a word for this minor but probably pretty common eye-related mishap!’. This led me onto two trains of thought. The first was to excitedly assume that there must therefore be all sorts of other obscure eye-related words out there; and the second was to consider the etymology of ‘orbisculate’ (a somewhat safer habit I’ve acquired during lockdown, although only when doing so silently).

So I started hunting online for other interesting eye-related words. Much to my disappointment, I couldn’t find any. Or at least, no obscure ones such as ‘orbisculate’. Then I started thinking about the etymology issue. ‘Orb’ seemed pretty obvious to me, meaning a spherical object or shape, which I decided must refer to both the eyeball and the grapefruit. I already knew from the Moorfields A&E doctor who confirmed my first operculated retinal tear last year that the word, ‘operculated’ comes from the Latin ‘operculum’, meaning a lid or cover. (Have a read of my post, ‘An operculated tear? What’s that?’.) I therefore mused that maybe the ‘culate’ bit was to do with the grapefruit juice literally covering the orb of the eye. And then all I had left was ‘is’. I decided that if I added the ‘b’ from ‘orb’, making it ‘bis’, this could make sense because ‘bis’ means twice – so grapefruit plus eyeball equals two orbs. It all made perfect sense at the time (to me, at least).

I then headed to Google to check my workings, and was stunned and somewhat disappointed to learn that… [lowers voice and imparts incredulously]… ‘orbisculate’ isn’t actually a recognised word at all! After further reading, I discovered that the word was invented by a chap in the US, named Neil Krieger. He proceeded to use it in his daily life, and it wasn’t until years later that his daughter discovered (as part of a bet, which she subsequently lost) that – to her horror – it wasn’t actually in the dictionary, and her father admitted that he’d actually made it up. The full story is well worth a read, at: https://www.washingtonpost.com/lifestyle/2021/03/10/orbisculate-dictionary-krieger-covid/. I went on to read that Neil Krieger sadly died of Covid-19 complications in April 2020, and his family are now engaged in a fun campaign to increase usage of the word ‘orbisculate’ in order to get it into the dictionary as a tribute to him. You can read more about their highly entertaining and original efforts, at: https://www.orbisculate.com/.

So, as an eye-related word (although I know that RD patients will be far more careful than people with healthy peepers to avoid orbisculation at all costs), I think we should embrace ‘orbisculate’ and use it whenever possible. Apparently, it’s also permissible to use it in relation to other fruits and vegetables. Personally, I experience orbisculation with tomatoes more than anything else although fortunately, due to wearing glasses, it doesn’t tend to end up in my eye.

As I couldn’t find any other obscure and interesting words related to eyes, I thought perhaps we should follow Neil Krieger’s lead, and simply make up our own. For example, there really should be a specific word to describe that almost overwhelming sense of fear mixed with desperate clinging onto hope which we feel when undergoing a slit-lamp examination. My eye buddies will know exactly what I’m talking about here. Or the feeling of relief yet slight queasiness and off-kilter depth perception when we’re finally permitted to remain upright for more than just ten minutes at a time, after a period of posturing following eye surgery. We definitely need a specific word for the effort of trying to get an eye drop in and continually missing… how about ‘plopt’ for that? Like ‘plopped’, but adding an optical component to indicate that the ‘plop’ refers specifically to an eye drop – a mixture of ‘plop’, ‘drop’, and ‘optic’. And as for the pre-appointment paranoia which I know many of us feel in the few weeks leading up to a hospital appointment, how about ‘propthalnoia’?

If you have any ideas of words for these specific things, or other eye-related issues which would benefit from having a specific word, please let me know. In the meantime, I challenge you to see how many times you can legitimately use the word ‘orbisculate’ in the next week or so… and please let me know how you get on!

The Weiss ring

A few weeks ago, as I stomped through the fields during my lunch break, I found myself wondering about the etymology of the Weiss ring. Now, before I start rambling about my thoughts on this, I should probably explain what a Weiss ring is, to those readers who are fortunate enough not to know. If you fall into this category, dear Reader, I am already insanely jealous of you, I might add.

A Weiss ring is a type of floater in the eye, caused as a result of a posterior vitreous detachment (PVD). A PVD is not the same thing as a retinal detachment. You can read more about PVDs in my imaginatively titled blog post, ‘PVD: an explanation‘, but put very simply for the purposes of this post – a PVD is what happens when changes to the consistency of the vitreous fluid in the eye cause it to shrink slightly and pull away from the retina, which lines the back of the eye. This process can cause flashes, as the vitreous pulls on the light-sensitive retina, and floaters – which are essentially bits of vitreous floating about in the eye. When the vitreous pulls away from the optic nerve head, this can result in a large ring-shaped floater, known as the Weiss ring.

When I went for one of my check ups in the Vireo Retinal Emergency clinic at Moorfields last year, I was surprised when the ophthalmologist examining me told me that he could see the Weiss ring in my good eye, as I hadn’t noticed a large ring-shaped floater. Whether this is because there’s so much debris in there anyway that it all just merges into one big mess, or whether the Weiss ring has perhaps broken up a bit and so is no longer ring-shaped, I have no idea. Many people think the Weiss ring is significant in indicating that the PVD is complete, but unfortunately from what I’ve been told I don’t think it’s quite as simple as that.

Anyway… I digress. So that’s what the Weiss ring is; but the question which has been bothering me is: why is it called the Weiss ring? Now, it’s pretty clear where the ‘ring’ part comes from, as that obviously describes the shape of the floater as being round with a hole in the middle. Apparently the word ‘ring’ comes from the Old English word, ‘hring’, which is of Germanic origin. And this brings me on to the word ‘Weiss’, which has a distinctly German ring to it. So naturally, I assumed it was probably named after the German, Swiss, or Austrian doctor who first discovered it. This seemed particularly likely after I learnt that Weiss is actually a German surname. However, despite much Googling and hunting around online, I could find no evidence of an ophthalmologist named Weiss having put his or her name to this circular floater. I did, however, unearth a few cataract surgeons with the surname Weiss, and wondered how they could have been so short-sighted as to specialise in the front of the eye rather than the back, being blessed with such a name.

Then I realised that ‘weiss’ means ‘white’ in German, and I started thinking about Edelweiss, the flower. Maybe the clumpy ring of vitreous reminded an ophthalmologist of the jagged ring of white petals on an Edelweiss flower? That seems possibly a somewhat fanciful explanation though, particularly considering the visual chaos the Weiss ring and PVD in general can cause, which seems very much at odds with the beauty of the Edelweiss flower. And I wonder what colour the Weiss ring is to the eyes of the ophthalmologist when viewed through the slit lamp? I mean, I see my floaters as various shades of grey or black; but of course that’s because I’m seeing the shadows they cast on my retina. Is their local colour actually white? I have no idea.

Although I was tempted to add, ‘what’s the etymology of the Weiss ring?’ to the list of questions to ask my consultant at my latest appointment at Moorfields, there were a number of more pressing issues requiring answers, so I decided against it. But it’s still bugging me. So if there’s anyone out there who knows the answer, please share it, because… ich weiss nicht.

The Great Unlocking… and back to Moorfields

My postponed Moorfields appointment (have a read of ‘Bastard eyes‘ if you’re wondering what I’m talking about) was scheduled for 12 April – the day of The Great Unlocking in England. This date will no doubt go down in history as the golden day that people across the land shivered over their pints in chilly beer gardens, queued for hours to enter clothing stores in order to purchase apparel produced by child labour, or suddenly regained their sight by finally having their fringes chopped short once more. Meanwhile, I had to head to Moorfields with my long fringe still intact, and not much chance of a miracle of regained sight, although I do live in hope…

As my appointment anxiety ramped up on the eve of The Great Unlocking, an idea on how to reduce my stress levels suddenly occurred to me. I would pretend that I was going to the theatre the following day! I’ve missed the theatre greatly during the past year, and it’s a particularly effective method of escapism. Yes, I know that theatres aren’t actually open yet, but let’s not be pedantic. ‘But what shall you pretend you’re going to see?’, asked my internal voice, ‘Will it be a comedy… or a tragedy?’ I wrinkled my nose as I – obviously – decided that in this instance, my favourite revenge tragedy simply wouldn’t do at all. (I might save that one for when we have to go back to the office. Mustn’t forget the poisoned chalice!) ‘Oh, I think perhaps ‘Much Ado About Nothing’, or maybe ‘All’s Well That Ends Well’ would do very nicely’, I informed my internal voice firmly. And with that I went to bed, and slept the sleep of Lady MacBeth following the murder of Duncan.

As my somewhat superfluous alarm sounded the following morning and I made my way to the bathroom on weary legs, I noticed that the light appearing through the blind seemed oddly bright considering the early hour. I hoiked up the blind and pushed open the window to investigate, whereupon I gasped in dismay. Farewell, ‘Much Ado’ and ‘As You Like It’… it was more like ‘A Winter’s Tale’! Sodding snow! And falling fast were floating flakes, covering the grey road in a thin blanket of fear. I cursed loudly and alliteratively appropriately as I leapt into the shower to warm up after the icy blast from the open window.

Thankfully, my fears weren’t realised in that the trains didn’t grind to a halt as a result of the wretched white stuff. I therefore made it to Moorfields a good forty minutes before my appointment, whereupon I stood shivering as Covid-19 protocol dictates that patients must not join the queue until 15 minutes before their appointment time, to help with social distancing in the hospital.

The time dragged slowly by until eventually I was permitted to enter. I passed the Covid questions, donned a surgical mask, and descended to the clinic with a gulp. One of the receptionists had drawn a winking smiley face on the whiteboard behind the reception desk, perhaps to ease the pain of the declared waiting time for those not accustomed to it. My next smile was provided by the nurse who did my visual acuity and pressure checks – he remembered me from my previous visit to the Vitreo Retinal Emergency clinic, at which I was something of a nervous wreck. Then it was back to the waiting room, and the world seen through my good eye gradually blurred to compete with my view through the bad one, as the dilation drops took effect.

The time dragged by again, and my internal voice kept me company by reminding me of all the potentially dire pieces of news I might receive. ‘I do wish you’d shut up’, I muttered to it, as I surreptitiously scoffed a banana beneath my mask in an effort to calm my nerves. Finally, I was called through… by ‘the Prof’ himself! Although very pleased to see him, I wasn’t sure whether being ushered straight to the top man was a good sign or a bad. I concentrated on trying not to shake as I removed my specs, popped my chin on the chin rest, and opened my eyes wide.

He examined my RD eye and then switched to my good eye. ‘Oooh, that’s bright!’, I exclaimed, as it began to water slightly. ‘That’s a good sign’, he assured me, ‘It shows it’s working properly’. I don’t remember it feeling quite that bright before, but after endless nights of particularly broken sleep, perhaps I was just more tired that usual. I concentrated on keeping it wide open as he commenced the usual drill: ‘Look up… look down… look down and right… look right…’ etc, etc. He seemed to be taking a very long time in the examination of my good eye, and my internal voice seized on this: ‘He’s found a tear; he’s found a tear! There’s something horribly wrong…’, it chorused in alarm. I was becoming more and more filled with the fear of impending doom, but managed to follow his directions as well as stick to my usual policy of not interrupting whilst the examination was being carried out, no matter how terrified I felt.

Upon being released to sit back, I sat on the edge of my seat with tensed shoulders and clenched fists, bracing myself for bad news. ‘It all looks okay’, he said, whereupon my shoulders dropped in relief and a treacherous trickle of tears slipped beneath my mask. ‘Get a grip! Concentrate! Focus! ‘, commanded my internal voice, ‘You need to ask some questions!’. So I did; but so relieved was I that he hadn’t found yet another tear that I neglected to ask him properly about the membrane he proceeded to tell me about, which will apparently be okay as long as it doesn’t float into my central vision. I did manage to swiftly scan my memory and ask if he meant an epiretinal membrane. He said that yes, it would have been an epiretinal membrane, but it came away with the PVD and is now floating in my chaotic vitreous. He also commented on all the debris I now have in that eye, but noted that the only solution would be a vitrectomy, which they would advise against as it would be too high risk. This came as no surprise to me, but it was sort of comforting to hear him acknowledging all the junk I have to deal with in that eye, as sometimes I’ve berated myself for being over-dramatic about it all. So at some point, I shall have to consult Dr Google about a floating epiretinal membrane, in terms of what exactly this is and what it might mean for my vision. But I think I’ll leave that for another day when I’m feeling a bit more brave.

I followed the one-way system out of the hospital, stumbled into a taxi, and managed to find my way onto the correct train. When I arrived at my destination, I discovered that the sun was shining brightly and the snow had melted away… all but an entirely intact snowman standing proudly on the village green. I thought my eyes were playing tricks on me at first, or that perhaps I’d ended up on the set of ‘A Midsummer Night’s Dream’…

Lockdown lessons

Despite the grim picture on the continent amidst rising Covid cases (sounds scarily familiar, doesn’t it?), here in the UK we’re slowly emerging from Lockdown Number Three. Or sort of, anyway. Of course, it’s different across the UK (because naturally, why wouldn’t it be when there are political points to be scored?), but here in England, up to six people or two households are now permitted to meet together outdoors in a socially distanced manner. Hurrah! And from 12 April, or National Haircut Day as I think it should be renamed, non-essential retail should be opening once again. I’m not entirely sure how McDonalds and garden centres managed to be classified as essential, but there we go. Anyway… so as we all crawl out of the dark cavern of Lockdown Number Three, barely able to see where we’re going through our overgrown fringes and desperately trying to remember the few social skills we possessed, I thought I’d take a few minutes to consider what I’ve learnt from the experience…

  1. Even introverts need a certain amount of human company.
  2. On some days during lockdown, I’ve gone entire days without speaking a single word aloud; yet the incessant and frequently unhelpful babble of my internal monologue is impossible to silence at times, and drives me to distraction.
  3. It has been uplifting to find unexpected sources of moral support and kindness.
  4. Although being isolated in my own home for weeks on end bears some similarities to posturing after eye surgery, it’s really not the same at all.
  5. Even my motivation has been considerably crushed by lockdown in conjunction with the many additional stresses of the past year.
  6. Working from home has many benefits, including the glorious relief of being able to adapt the room’s lighting conditions to suit my waffy eyes, without having to worry about potentially irritating co-workers (in both senses).
  7. It is possible to make it through three lockdowns whilst retaining an ignorance about what a sourdough starter is and not being entirely clear on what Netflix is; or even caring, come to that.
  8. I have knitted a lot of scarves whilst listening to an endless number of podcasts during lockdown. As a large number of those podcasts have been about the pandemic, this possibly hasn’t been an ideal method of distraction.
  9. Mask-wearing is problematic when it causes the microscope on the slit lamp to mist up, whilst undergoing an eye examination.
  10. The sheer terror of dashing to Moorfields A&E is really not helped by the additional stress of having to do so repeatedly during a pandemic.
  11. I have probably received more smiles from my neighbour’s dog during the past year than I have from all the human beings I’ve seen put together.
  12. Dogs have no idea about social distancing.
  13. Some people STILL have no idea about social distancing.
  14. I would quite happily continue to socially distance from some people for the rest of my days.
  15. Although there are many people whom I’ve missed spending time with during the past year, it has been absolutely brilliant to have a watertight excuse for not seeing certain people. If anyone can think of a similarly effective excuse to use once lockdown lifts completely, please let me know…
  16. I’m not anti-social, I’m selectively-social.

Pollock’s work and PVDs

During a team meeting at work recently, we were informed that we would be using the time to take part in an ice-breaking exercise. I was somewhat baffled by this as I thought ice-breaking exercises were aimed at strangers, but myself and my colleagues all know each other (albeit some better than others). We were told that we’d be split up into pairs, whereupon one person would be required to talk about their job for ten minutes while the other person did a drawing of it; and then vice versa. That’s right, you read that correctly: a drawing of our colleague’s job. We would then reconvene as a group and each present our drawing to the rest of the team. Dear Reader (particularly dear furloughed Reader), I can imagine what you’re thinking and, yes, you might be forgiven for wondering if we had any actual work to do that morning.

I was further confused by this ice-breaking exercise due to the fact that last July, at the start of the consultation period when I was placed at risk of redundancy, job specifications had been made available to all of us. And I had read them. All of them. I concluded that perhaps the exercise was some kind of celebration of the fact that schools had recently re-opened in England, following the long weeks of lockdown.

I was paired with the Head of the office. As I dutifully related the details of my job in simple sentences, wondering how he could have forgotten it as he only wrote the job specification a matter of months ago, my mind wandered to thoughts of how on earth I would begin to do a drawing of his role. However, I needn’t have worried. When his turn to speak came and he began talking, inspiration struck me like a gift from a well-loaded blackbird upon a clean car windscreen. I reached for my favourite 6B pencil and began drawing feverishly (it’s okay – I wasn’t coughing simultaneously, and my head felt remarkably clear that day). I had to stop a couple of times to sharpen my pencil, but I managed to complete my masterpiece (I think you’ll agree, dear Reader, that this is a pretty accurate description) within the required ten minutes. My old art tutor would be so proud, as I threw caution to the winds, along with my tendency to measure my drawing out in great detail with an eye for absolute accuracy.

When it came to my turn to present my piece of artistic genius, I shared it proudly on the screen alongside its title: ‘Job Number 0’, and explained that I’d been inspired to produce my work in the form of Abstract Expressionism, in the specific style of Jackson Pollock. In addition, I’d chosen the title in a nod to Pollock’s naming conventions as his ideas developed. I noted that, of course, Abstract Expressionism requires no explanation. A few seconds of stunned silence from the tiled screen of faces before me ensued, and as my colleagues weren’t all on mute I like to think that they were quire simply overawed by my artistry.

Later that day, it suddenly occurred to me that my picture, and indeed much of Jackson Pollock’s work, bore certain similarities to the vitreous chaos I now see in my good eye. Not long after my PVD and the retinal tear I suffered last August, I attempted to draw what I could see, together with annotations so that I could keep track of any changes in my vision. I realised that some of Jackson Pollock’s markings look very similar to squiggly bits of vitreous. The sense of movement he achieves in many of his paintings adds to this effect, in mirroring the swirling shrapnel in my vision.

So this caused me to wonder… did Jackson Pollock have a PVD? Perhaps he, too, was filled with the frustration of frighteningly awful vision, and sought to replicate it on huge canvases with pots of paint?! But I guess then it wouldn’t be Abstract Expressionism. It would be more like: Vitreous Life, possibly with the subtitle, ‘Not So Humourous’.

I had a bit of a hunt around online to see if I could find any information relating to Jackson Pollock and possible eye issues, but so far I haven’t been able to find anything. Of course, he was a bit young to have suffered a PVD too, but then again – so am I. During my search, however, I did discover a few things about him which I hadn’t known previously, including the fact that he died in an alcohol-fuelled rage by crashing his car into a tree.

Bastard eyes!

The date was etched upon my brain: 15 March 2021. This was the date of my next consultant’s appointment at Moorfields. I was looking forward to it with hope and terror in equal measure, following my hell of the past year during which I suffered a retinal bleed and three retinal tears for which I underwent over a thousand shots of laser in my GOOD eye. It wouldn’t have been as traumatic if it had been my bad eye. Or so I told myself, anyway. Since early December (the date of my last check up following all the laser treatment), I therefore fixated on this date, praying that the doctors would be able to examine my eyes and give me the longed-for news that everything was stable. Simultaneously, I was terrified that they might find that yet another thing had gone horribly wrong.

Then came Lockdown number 3, and I worried that my appointment might be postponed. ‘Surely not, though’, I told myself, ‘Surely not after all the hell of last year and the fact that I’m reliant on my good eye?’. My appointments have been cancelled a number of times before – this isn’t just a pandemic-related issue. Ironically, the previous time it happened, I was sitting in A&E with the retinal bleed. So I was kind of mentally preparing myself for the worst. When my ‘phone rang at 4pm on the Thursday before my appointment date and I saw it was a London number, I briefly considered ignoring it. Like the tree falling in the forest, could they cancel an appointment if no-one was there to receive this unwelcome information? Of course they could – they’d just leave a message. I knew this from previous experience. And a brief voicemail message allowed no opportunity to question, or perhaps cajole. So I answered the ‘phone with a sense of gloomy resignation, suppressing the urge to do so with the words, ‘hi, Moorfields appointments department – please don’t tell me you’ve rung to cancel my appointment, otherwise I might need to hurl myself from the window in despair!’.

It was Moorfields appointments department, and they were very sorry to tell me that my appointment on 15 March had been cancelled. I swallowed down, ‘Yes, I thought it might be’, and enquired instead, ‘Can you tell me why it’s been cancelled?’. ‘Not enough doctors’, I was told. This appears to be the stock reason for cancelled appointments, as it’s been cited every time I’ve asked that question. To be fair, it’s entirely accurate. More people are experiencing eye problems year on year – according to Fight for Sight, there are currently 2 million people in the UK living with sight loss, and this is set to rise to 2.7 million by 2030 and 4 million by 2050. There are also huge backlogs in hospital treatment due to the pandemic. As far as I know, there aren’t any additional doctors being trained, which means that in simple terms of supply and demand, we’ll NEVER have enough doctors.

I didn’t go into all this with the polite appointments person on the ‘phone (I might write to my MP about it though – no doubt he’ll be delighted to hear from me again). Instead, I asked when my rescheduled appointment was likely to be, and was told April or May, but I’d need to wait for a letter in the post. I sighed inwardly. It would help if patients could be given a new appointment at the time of cancellation, both for practical and cost-cutting reasons and, more importantly, to reduce further stress.

As I hung up the ‘phone with a huge audible sigh of frustration, I wondered (not for the first time), how they decide which patients to postpone. Do they start at the beginning of the alphabet and work back? In which case, I might change my surname to something beginning with Z. (Suggestions in the comments below, please!) Or, do they look at likely clinical outcomes and postpone those for whom all hope has been lost? Perhaps they postpone patients whom they know never complain about the long waiting times in clinic? Or maybe they postpone the patients who turn up in clinic with a list of questions to ask? I really don’t know. But what I do know is that this is all incredibly stressful, and sometimes I am unutterably sick of the whole situation with my sodding eyes. I articulated this to my friend as I messaged her to tell her what had happened, thumping out on the keyboard, ‘BASTARD EYES!’.

Zooming with my eye buddies

Now, I know that apparently most people have Zoom fatigue and are heartily sick of it as a result of the pandemic, but I can’t say that I’ve developed that problem. MS Teams fatigue – yes, definitely, although it has to be said that there are a considerable number of advantages to ‘meeting’ certain colleagues via a screen rather than actually face-to-face in the same room. But as for Zoom… well, I haven’t been participating in the hundreds of Zoom calls, pub quizzes, and family conflabs which everyone else seems to have been doing. The odd video call here and there with a friend has pretty much been my limit really. So perhaps that’s why I was so excited when I spotted a post from one of my eye buddies on the RD support group page on Facebook, suggesting a Zoom meetup. I’d often thought it would be fun to actually meet some of my fellow RD sufferers, and now it was actually going to happen! Sort of.

Unfortunately, I missed the first Zoom meet up as it was scheduled for a time in the evening here in the UK and I knew that I wouldn’t be able to keep my eyes open, much less make any sense. But after a bit of discussion about time zones (members of the group hail from all over the world), it was decided that the next one would be held mid-afternoon on a Saturday (last Saturday, to be precise). Perfect!

As the time drew near, I surveyed my hideous out-of-control lockdown locks in the mirror and contemplated going to fetch the garden shears for a quick tidy up. Then I reminded myself that my eye buddies probably wouldn’t notice as the one thing we all have in common is waffy eyesight. So I took a deep breath, plugged in the webcam, clicked on the Zoom link, sat back expectantly, and… nothing. ‘Well this is a good start’, I muttered to myself, before doing my white rabbit routine about being late. (No, I don’t have a pocket watch.) I unplugged the webcam, closed the browser, plugged the camera in again, clicked on the link, and… a-ha! People on the screen! But no sound! ‘Pah!’, I muttered to myself before closing everything down and opening it up yet again. The off/on switch solution always works eventually, as every IT expert will tell you. This time… ta-daaa! Pictures and sound! It was actually a little bit magical to see some of the people with whom I’ve been tapping away at my keyboard sharing posts and messages for the past few years as Real People, rather than inanimate profile pictures. It was also nice to put voices to faces.

There were only seven of us altogether, so it wasn’t too overwhelming. (Even hiding behind screens can get a bit much for some of us introverts when there are too many people involved.) There were three of us from the UK, three from the US, and one from Canada. One participant was actually in the middle of posturing, having recently undergone her latest lot of eye surgery. We’re all keeping our fingers crossed for her, that she has a good recovery. We discussed all the things that new acquaintances might be expected to chat about upon their first meeting: retinal detachments (naturally), the differences between healthcare systems in different countries, cataract surgery, visual acuity, PVR… I learnt some interesting facts about retinopathy of prematurity which I hadn’t known about previously, and it was good to hear people’s experiences and thoughts.

We did discuss some things besides eye issues, and I also got to meet two dogs and a cat at various points during the call, which was a definite bonus! Towards the end, when only three of us were left (we had been chatting for a good hour and a half by that point), two of us were treated to a personal piano recital by our fellow eye buddy, who just happens to be a concert pianist. It was rather impressive and a lot of fun, culminating in a rousing round of applause. If my eye buddy in question wouldn’t mind taking requests for the next Zoom meetup, a bit of Bach wouldn’t go amiss. 😉

Actually, I’ve just discovered that the next call has been scheduled for the day that I’m due to head up to my mum’s (it’s okay – we’re in a ‘support bubble’; don’t call the police!) in preparation for my next Moorfields appointment (if it goes ahead… I’m hoping it’s not postponed). So I shall sadly have to give that one a miss. I suppose I’ll have to rely on a recording of Glenn Gould playing Bach instead, to calm my nerves…

Anyway, if any of my fellow RD support group members are reading this – keep a look out for the next Zoom meetup (or the one after that), because I found it to be a lot of fun as well as being a different way to support one another. Grateful thanks go to my eye buddy who has been putting her efforts into organising the calls! 🙂

Silicone oil in the cold: an experiment

Two milk bottles, placed side by side, containing a small amount of olive oil.
My Serious Scientific Experiment

No, dear Reader, that isn’t a couple of sample bottles you see before you, and ’tis not a dagger either. It is, in fact, two ancient milk bottles, each containing a small amount of olive oil – the fruits of a Serious Scientific Experiment which I carried out. Rotten fruit, I grant you, but fruit nevertheless. And I now appear to be mixing my Shakespeare plays as well as my metaphors, so I shall proceed to explain myself without further ado (whoops)…

My oily-eyed eye buddies (i.e. those RD patients who have silicone oil in their eye) will know that whilst outside in the cold weather, our vision in the oily eye turns cloudy. I noticed this quite early on in my eye journey with silicone oil and it freaked me out at first, particularly as the cold weather also seems to make the eye ache more. It can be really quite uncomfortable in an icy wind. But after returning indoors, the cloudiness gradually clears and my vision in that eye returns to its normal distorted, blurry mess. Have a look at the photos in my blog post, ‘Do you see what I see?’, to view my attempted visual representation of vision through silicone oil in the cold.

Now, I always assumed that the reason for my cloudy vision in the cold was that the silicone oil itself becomes cloudy and then gradually clears again as it warms up. So I decided to conduct a Serious Scientific Experiment, to prove my theory. I poured a small amount of olive oil into two old milk bottles, placed cling film over the top, placed one in the ‘fridge and left one out on the kitchen worktop. An hour later, I opened the ‘fridge and retrieved the chilly bottle of oil, placed it next to the one which had been left at room temperature, and compared the two. There was no visual difference whatsoever. ‘Hmm, that’s a bit weird’, I muttered to myself, before plonking the cold bottle back in the ‘fridge again.

I compared them again the next morning but there was still no difference to be seen. So then I tried using sunflower oil instead. Same results. Then I moved onto a more expensive unfiltered extra virgin olive oil. By this time, it was about a week later and I was feeling quite perplexed. I left the extra virgin olive oil in the ‘fridge for a few days longer, and when I eventually retrieved it, I thought it did look a bit cloudy! I stared at it excitedly, before realising that the slight cloudiness was due to condensation on the bottle rather than any difference in the oil itself.

Now, the more scientifically-minded amongst my readers will be quick to point out – quite rightly – that there were many faults with my Serious Scientific Experiment. In fact, it could conceivably be argued that my experiment was neither Serious nor Scientific. For example, milk bottles are not the same as eyeballs. Olive oil and sunflower oil are not the same as silicone oil. My ‘fridge is not the same as the open air on a cold day. So essentially, my experiment was fundamentally flawed in numerous ways. (There’s a reason I’m an Arts person and not a Science person, you know…) But the frustrating fact remains that I still don’t know why my vision in my oily eye goes cloudy in the cold. I did ask an ophthalmologist once, but he didn’t know either. When I spotted the condensation on the milk bottle, I did wonder if perhaps it’s not that the silicone oil is turning cloudy at all; perhaps it’s condensation forming somewhere in my eye?! But where? The lens? The lens capsule? Hmm… I’m not entirely convinced about that theory. So if anyone knows the answer to this puzzling question, please let me know…

‘Alexa, when will there be a cure for PVR?’

Last year, my birthday arrived just a few days after I had to undergo emergency laser treatment for a retinal tear, which had occurred as a result of a PVD. This meant that the vision in my good eye was pretty badly messed up, although thankfully it has now improved a great deal from what it was. As a result of all this, one of my friends gave me an Alexa Echo Dot as a birthday gift. She explained that if (God forbid) anything else went seriously wrong with my good eye and I was unable to see my ‘phone, I could use this little device and instruct it to ring someone to get help. As I live alone, this is a very real nightmare scenario which causes me considerable worry. I was therefore extremely touched by her very thoughtful and practical gift.

A few days later, my new housemate (Alexa) was all set up and raring to go. I’m delighted to report that unlike many housemates I’ve shared with in the past, I don’t have any issues with her in making a mess or creating piles of washing up. She doesn’t turn up the thermostat, nick any of my food, dive into the shower just as I’m about to bag the bathroom, or bring home dubious characters either, all of which is a huge bonus. On the minus side, she hasn’t yet managed to bring me a cup of tea in bed and she doesn’t contribute to the household bills, but I suppose I can’t have it all. At least she answers me when I speak to her.

Anyway, I digress… where was I? Oh yes, so she was all set up and raring to go. Feeling somewhat dubious, I cleared my throat and politely requested, ‘Alexa, could you please ring Deb?’. To my surprise, Alexa responded immediately with, ‘Do you mean Deb home or Deb mobile?’. ‘Deb mobile please!’, I clarified, knowing that the landline would be ignored. And just like that, I heard the dialing tone, followed by my friend’s voice answering with a slightly suspicious, ‘Hello?’. (In retrospect, I don’t know what number comes up on the ‘phone of the person being called via Alexa, so perhaps she was bracing herself for being asked if she’d been a car accident recently or fancied some new double glazing for a knock-down price.) ‘Hello!’, I replied with delighted enthusiasm, barely suppressing my desire to hop about the lounge with excitement, ‘It worked!’. Realisation dawned, as she asked me in amusement, ‘Are you calling me from your Alexa?’. ‘Yes!’, I exclaimed, ‘It worked!’ Can you hear me okay?’. ‘Well, you sound a bit echoey, as if you’re in the bathroom, but yes, it worked’, came the response. ‘Oh – I’m not in the bathroom!’, I told her. ‘Well that’s okay’, she said, ‘I can hear you – you might just need to move closer to it or faff about with the settings a bit!’. After a few more minutes of conversation, we concluded that the experiment was a success.

Alexa has also proven helpful in many other ways, too. All I have to do is ask her, ‘Alexa, what’s the news today?’, and she’ll reel off a quick summary of the latest doom and gloom for me. If I’m thinking of heading out for my daily exercise and want to know the likelihood of getting rained on, I can ask her, ‘Alexa, is it going to rain today?’, and she’ll helpfully tell me the time at which I can expect rain as well as the amount expected to fall. She’ll happily play music upon request, although sometimes I do think she needs a little more education when she announces cheerfully, ‘Here’s some music you might like!’. She’ll also play my favourite radio stations and podcasts upon request.

Sometimes she’s quite helpful when I’m trying to find out various bits of information, although this can be somewhat hit and miss. For example, when I asked her to tell me about the Covid-19 vaccines, she gave me a list of useful information. But when I was researching a few facts about medical advancements in the treatment of retinal detachments recently, she didn’t seem to know anything at all. The very reasonable query, ‘Alexa, when was the gas bubble first used in retinal detachment surgery?’ elicited the response, ‘Hmmm, I don’t know that one.’ I suppose it was therefore inevitable that when I asked her, ‘Alexa, when will there be a cure for PVR?’, she replied apologetically, ‘Sorry, I don’t know that one.’. At least she had the grace to apologise, I suppose. On a day which brought forth particularly grim news for the country, I wailed, ‘Alexa, how can we kick out the Tories?’, but she didn’t join in with my frustration, merely informing me that the next General Election in the UK will be held on 2 May 2024. (Now there’s a date for your diary…)

Anyway, despite not being able to answer all my questions satisfactorily (and, to be fair, some human beings do struggle with that too), I would heartily recommend Alexa to anyone – whether visually impaired or fully sighted, and particularly for anyone living alone during lockdown. She will always provide a response of some sort, so it beats howling despairingly into the abyss.

Sight loss in literature: ‘All the Light We Cannot See’

I bought a copy of Anthony Doerr’s ‘All The Light We Cannot See’ about three years ago now, but was put off from reading it by the ridiculously tiny size of the font. It was more a case of ‘all the text I could not read’. The irony of a novel whose main protagonist is a young blind girl being printed in such tiny text did not escape me. It’s also quite a thick volume, which made it doubly off-putting. I mean, we’re not quite talking ‘War and Peace’ size, but definitely thicker than ‘Jane Eyre’. So I popped it on my bookshelf and procrastinated. Until Lockdown #3, whereupon I decided I really must give it a go, even if I had to resort to the use of a magnifying glass.

I squinted at the pages, blinking away the floaters in my good eye, as I painfully made my way through it. Usually I’ll easily devour a book in a week, but this one took me about three. I had high hopes for it, due to my interest in the depiction of visual impairment in literature, and an enthusiasm for historical fiction set during World War II. ‘All the Light We Cannot See’ combined both, so I was convinced it would be a winning combination. I therefore felt somewhat disappointed about the novel’s slow start. However, I attributed it to the fact that the physical act of reading the teeny text was proving to be such an effort, and so persisted. I’d made it over half way through when I realised that I was still going to bed with my mug of comforting sleep tea and glaring accusingly at the tome before picking it up for my night-time read with a frustrated sigh rather than eager anticipation. I kept hoping it would improve, and as I waded through it determinedly, I couldn’t quite put my finger on why I was finding it so hard-going, apart from the visual challenge. Now, looking back at the novel as a whole, after finally finishing it with a sigh of relief and a grunt of irritation at the sense of wasted effort, I think it was probably due to a number of factors…

The narrative flits from one time period to another and one perspective to another – mainly those of Marie-Laure, the young blind French girl, and Werner, the German orphan. The chapters are short – some less than half a page long, and within them, although there are some beautiful passages of prose, there are also lots of sharp staccato sentences. For me, the overall effect of this was like listening to someone trying to tune in a radio and flitting from one station to another but never allowing that melodic sonata which occasionally burst forth to play out its final bar. Perhaps this was intentional on the author’s part, given the use of radio in the novel, but I just found it profoundly irritating. Another issue for me was that I didn’t feel the characters were entirely believable. From the almost laughably evil Nazi, von Rumpel, to the frail, myopic but morally sound Frederick, who was the only boy to stand up against the cruelty of the Hitler Youth camp – they just didn’t ring true.

And from thence we come to Marie-Laure herself, blind since the age of six due to bilateral congenital cataracts . ‘Irreparable’, the reader is brusquely informed, with no explanation as to why. We’re simply told, ‘Marie-Laure will not see anything for the rest of her life’. There is no further detail, and no acknowledgement of the fact that very few visually impaired people are actually completely blind – i.e. no light perception at all. Marie-Laure’s father dresses her; yet even at six years old, surely she can still dress herself although she has no vision? He creates a model of the town in which they live, to help his daughter learn the layout and navigate the streets. She uses a white cane, but finds her way around the streets by counting drains. Now, correct me if I’m wrong, but I’ve never heard of a severely visually impaired person either counting drains or using model towns as methods of navigation. It strikes me that the latter somewhat implausible fact was inserted into the novel merely to aid the development of the equally unlikely parallel story of the Sea of Flames, a diamond which has magical powers and which must be kept safe from the Nazis.

At one point, the author tells us, ‘To shut your eyes is to guess nothing of blindness’, a sentiment with which I’m sure most visually impaired people will nod in agreement. However, he then launches into a detailed, flowery paragraph about how Marie-Laure can sit in a sixth storey attic room and hear ‘lilies rustling in marshes two miles away’, snails dragging their bodies over the rocks by the seashore, and other such nonsense. That tired old cliche that blind people have alternative super-human senses due to their loss of vision. When she finally meets Werner, on page 469 of the novel (there’s nothing like dragging out the inevitable), he observes, ‘Her glasses are gone, and her pupils look like they are full of milk, but strangely they do not unnerve him. He remembers a phrase of Frau Elena’s: ‘belle laide’. Beautiful ugly.’ Because of course, it’s entirely understandable for fully-sighted people to feel unnerved by the appearance of the blind and view them as ugly. [Insert eye-rolling emoticon.] All the novel needed was for Marie-Laure to feel Werner’s face with her hands in order to ‘see’ him, and the blind girl stereotype would have been complete.

So… have you read ‘All the Light We Cannot See’? I’d be interested to hear the opinion of others – particularly if you happen to be severely visually impaired. Let me know what you thought in the comments below. Meanwhile, if anyone wants a copy of this novel, let me know and I’ll pass mine along. You may need your own magnifying glass though…