Ten years of sight loss

In the early hours of the morning of 15 April 2014, I was diagnosed with a retinal detachment in my right eye and two retinal tears in my left eye. To add insult to injury, I was in Berlin at the time, on a long weekend with an old university friend. It was supposed to be the start of a happier year, after two very close family bereavements the previous year. After initially being advised by the ophthalmologist that the best course of action would be for me to undergo surgery in Berlin immediately, it then transpired that my macula detached whilst still undergoing tests and examinations, which meant that her advice changed and I was told to get an emergency flight home to the UK and undergo surgery as soon as possible.

And that was the start of my sight loss journey… a journey which I now know won’t end within my lifetime. You can read the full story in my blog post, “How it all began“. Ten years on from that terrifying night, I look back and relive the fear, assess where I’m at now, and consider what I’ve learnt on this enforced journey. In terms of the basic physical circumstances of where I’m at: after multiple re-detachments due to PVR I’ve had silicone oil in my right eye since 2015. That eye has “no useful vision”, as they say in the medical jargon. Personally, I prefer the description “severely limited vision”. For those of you who understand the medical jargon, I’ve had five vitrectomies (the first with long-acting gas, then silicone oil, then oil again, then short-acting gas, and then my current lot of oil), three retinectomies, several lots of cryotherapy, and 360 degree laser. I’ve done A LOT of posturing after those operations.

Those of you who follow my blog regularly will know that I’ve had a bit of bother (understatement alert!) in my left eye too. In medical jargon: Five retinal tears, requiring cryotherapy and laser retinopexy, lattice degeneration, a PVD, a floating epiretinal membrane, and FOUR DIFFERENT TYPES OF SODDING CATARACT. (You can read more about my current predicament with my left eye in my post “What fresh hell is this?”. In non-medical jargon: the vision in my left eye has been getting worse over the past twenty months.

In terms of the emotional and psychological aspects of where I’m at now… well that varies. Sometimes I make a conscious effort to focus (no pun intended) on what I CAN see, and tell myself that I’m lucky as I’m well aware that things could be so much worse. But then the other part of my brain pipes up with: “Yeh, but things could be so much better, too!”. And so the thankfulness gives way to feelings of frustration, overwhelming sadness, occasional anger, despair, terror, and just simple tiredness… such is the emotional washing-machine cycle of sight loss. Occasionally, I still berate myself as to why, ten years ago when I got on that ‘plane to Berlin, I hadn’t gone straight to the optometrist instead. But hindsight is a wonderful thing (again, no pun intended) and back then I knew nothing at all about retinal detachment and had put my very minor initial symptoms down to insomnia and stress.

As to what I’ve learnt over the past ten years… I’ve learnt A LOT. I have joked in the past that if I were to go on “Mastermind” I’d pick retinal detachment as my specialist subject… although, another thing I’ve discovered is that the more I learn about eyes, the more I realise I don’t know about them. So, apart from that somewhat depressing gem, here are my top realisations, after ten years of living with sight loss:

1. I’m extremely glad I didn’t know what was coming down the line for me, back on 15 April 2014, otherwise I think I would have found the nearest cliff and jumped off it. If I’m ever given the option of selecting a superpower, the ability to see the future definitely won’t be the one I choose.
2. As human beings, we are far more resilient than we think we are.
3. Ophthalmologists are like superheroes, but the key word there is “like”. Sadly, they can’t always fix things.
4. The human eye is INCREDIBLY complex.
5. Posturing is a special kind of hell.
6. I would willingly exchange a limb for good eyesight with the promise of no more eye problems.
7. As patients, we need to advocate for ourselves.
8. Sight loss is exhausting.
9. The RD support group on Facebook has saved me from going completely insane (some people may refute this statement).
10. It appears that Charles Dickens did at least say one useful thing: “No-one is useless in this world, who lightens the burdens of another.” This is a handy thing to remember when feeling low, as there’s always something one can do to lighten another’s burdens, even if it’s only something which seems very minor.

And so, dear Reader, on I plod… trudging determinedly past the ten year marker as I thumb my nose at it, even as I have to make a concerted effort to lift each foot from the squelching mud which seeks to unbalance me and send me sprawling on my face. I may need to buy myself some waders…

“What fresh hell is this?”

I had a Moorfields appointment booked for last Monday and, as is generally the case these days, I became more and more jittery as the day approached. I convinced myself that the vision in my right eye seemed worse than usual – it seemed to be more foggy at certain times. I told myself it was just anxiety and perhaps seemed worse due to the issues with the cataracts in my left eye. I fretted that the visual acuity in my left eye was worse, and worried that I’d dipped below the eyesight requirements for driving again, despite having had yet another new left lens only four months previously and religiously carrying out the 20 metre numberplate test every month.

During the week preceding the appointment, I prepared myself for what felt like the inevitable ‘phone call from the hospital, postponing my appointment. I decided that I’d protest, and rehearsed what I’d say to convince them not to put me off yet again. When I received a call from a London number just a few days before my appointment date, I snatched the ‘phone up in a panic as my heart pounded and my palms sweated, only to discover it was a cold caller. Suffice it to say, I don’t think that particular caller will be bothering me again in a hurry after I’d finished giving him a strongly worded piece of my mind.

To my amazement, the dreaded ‘phone call didn’t materialise, and hence I set out with my sister at the crack of dawn to catch the train through the Dickensian mist to London. Sadly, despite the recent 4.9% increase in rail fares (following a 5.9% increase in 2023), there didn’t appear to have been any accompanying increase in capacity, as we were forced to stand for the entire journey. The tedium was alleviated in an alarming way when one of our fellow passengers standing by the opposite doors proceeded to quietly faint. Fortunately, she was just as quietly caught by one of the chaps standing opposite her, and he capably lowered her to the floor without the slightest bit of fuss. My immediate panic about my lack of first aid skills was alleviated somewhat as she thankfully came round fairly quickly, complaining that she was hot. The chap and my sister helped her to remove her coat and jumper in an effort to cool her down, while another fellow standing passenger sent out a plea first for water, and then for a bag (she was also feeling queasy). Several bottles of water and a plastic bag were helpfully passed down the carriage and after a while she began to look a little better. It transpired that she was on her way to work and hadn’t eaten any breakfast yet. “Whaaaaaaat? No breakfast?!”, I gasped in horror as I offered her my emergency cereal bar. She declined, but did accept a couple of mints in an effort to give her a sugar boost, at which point a seated passenger called out that she had some chocolate if needed. I didn’t like to comment that chocolate was always needed, but instead joked, “You won’t be needing any breakfast when you get to work – someone’ll be offering you a cooked breakfast next!”. She laughed, which we took as a sign that she really was feeling better. As we drew into Waterloo and one of the guys helped her on with her coat, she thanked him, saying, “You don’t get this service on the tube!”, and seemed to be okay as she set off towards the ticket barriers.

So all was thankfully well, but just a note to Network Rail here… you might want to reduce the furnace-like heating on the trains, and perhaps you could use the money saved to slash a small amount off the extortionate ticket prices. Particularly as keen readers of my blog may remember that a similar incident occurred on a busy train journey I took up to London back in October. I really don’t want people fainting on trains to become a regular occurrence!

Anyway… we made it to Moorfields and descended to the – as yet – fairly empty clinic, whereupon I was called through by the nurse pretty quickly for the initial checks. And that was when things began to get a whole lot more stressful. I struggled to read the Snellen chart with my bad right eye. I managed to read the first big letter, but couldn’t even make out the two letters on the next line. Usually I can make them out using eccentric vision, but I just couldn’t see them. It was no better through pinhole, much to my dismay. By this point I was starting to panic and my hand holding the occluder was shaking. The nurse was really kind, telling me to take my time and not rushing me. My panic was eased somewhat by the fact that I managed to read 6/9 with my left eye, and 6/7.5 through pinhole. My pressures were within the normal range, which was also a relief. But why couldn’t I manage to make out the second line of the chart, as I usually could? And why was even the first letter such an effort? My brain frantically raced to all the worse case scenarios… another detachment? Glaucoma? Emulsification of the oil? I barely noticed the sting of the dilation drops, as the nurse told me not to panic and I thanked her for being patient before heading back to the waiting room.

Following the slit lamp examination, the ophthalmologist explained that the issue in my right eye was posterior capsular opacification (PCO), or ‘secondary cataract’, as it’s sometimes described. This is a fairly common problem after cataract surgery, which occurs when cells grow over the back of the lens capsule, causing it to become cloudy, meaning that less light can travel through. Usually, this is treated simply using YAG laser, but I was told that this wouldn’t be possible as I have silicone oil in that eye. Instead, I was advised that it would require a surgical procedure, where they’d go into the eye and polish up the lens capsule. If I have this, it will only get my vision in that eye back to 6/60 and 6/36 with eccentric vision, so we agreed to leave it for now and they’ll monitor it.

So at least that news wasn’t as horrific as I’d feared. However, worse was to come. The real punch to the gut came when the ophthalmologist started talking about cataract surgery, and explained that I have a posterior polar cataract in my left eye. I was bemused. No-one had ever mentioned this previously. I’d never even heard of a polar cataract before. I queried it, telling him that it was my understanding that I had a posterior sub-capsular cataract, a nuclear cataract, and a cortical cataract in that eye. I thought that was bad enough, but it seems that a posterior polar cataract is a whole new level of hell… because I clearly haven’t been punished enough with all this eye crap.

He explained that a posterior polar cataract means that the structure of the lens capsule (which holds the lens in the eye) is compromised. This means that there’s a greater risk of rupture of the lens capsule during surgery, together with the risk of bits of the broken lens (during cataract surgery, the natural lens is broken up and then sucked out of the lens capsule) falling out of the lens capsule to the back of the eye. This complication would require further surgery. I stared at him through heavily dilated eyes, in undisguised horror and despair. “This sounds like an absolute nightmare”, I observed. He didn’t disagree. I was having trouble processing this unexpected information, but fortunately he was very patient in explaining and answering my questions before going to fetch the Prof, who confirmed everything. The upshot of all this was that after asking me what symptoms I’d been noticing and how I’d been coping, he said that it’s clearly having quite a detrimental impact on my quality of life and has therefore referred me back to the cataract department to see a specialist cataract surgeon.

I felt completely shellshocked as we left the hospital, and have been fluctuating between complete panic and despair to resigned efforts to talk myself down and convince myself that “it could be worse!”. I made the mistake of consulting Dr Google on the subject of posterior polar cataracts for a few minutes once my eyes were no longer dilated, and frightened myself half to death, so I’m steering clear of attempted research for the moment. One thing I learnt is that apparently posterior polar cataracts are rare, causing me – yet again – to wail: “WHY CAN’T I JUST HAVE NORMAL EYES, FFS?!” If anyone has any useful advice or is a good aim with a shotgun, please get in touch. I am literally almost at my wits’ end with all this.

Digital accessibility: tips

Following my blog post “Digital (in)accessibility”, as I’ve found it so difficult to obtain any clear help and advice in relation to the issues I’ve been facing in the past few months due to my deteriorating eyesight, I thought it might be helpful to share what I have managed to discover, in the hopes that it’ll be useful to others who are in a similar position of feeling that they’re metaphorically repeatedly banging their heads against a brick wall whilst straining their eyes. I should emphasise that I’m not a tech expert, and I’ve discovered these methods of making screen work easier for me via a mixture of experimentation, desperate Googling, advice from a Helpdesk chap at my workplace, and tips from eye buddies and friends. However, it remains a constant battle and source of irritation that so many things simply aren’t fully accessible, despite organisations (including my own workplace) making self-congratulatory comments about how inclusive and diverse they are. Just this week alone, I’ve come up against the following issues at work:

1. An all-staff email newsletter composed, as is customarily the case, using text and background colours which provide extremely poor contrast, making it very difficult to read.
2. A link from that all-staff newsletter to a report detailing results of a staff survey conducted last year, in an inaccessible format.
3. Another link from the newsletter to a web page encouraging staff to sign up to some kind of private healthcare scheme, with a link to further documents in an inaccessible format. (“Sign up quickly, so that you don’t miss out!”, we’re urged. Hmmm.)
4. An inaccessible Excel file, sent to me from a colleague who I work with directly.
5. A link to a survey relating to a piece of work which I’m unable to read as the contrast between the text and background is so poor and there seems to be no method of adjusting it.

Anyway, so that’s my rant over (for now). Let’s crack on with those things which I’ve actually found to be helpful…

Adjusting overall settings on PC or laptop

If you go into the “ease of access” or accessibility settings, you can make all sorts of changes to the overall settings, such as making everything bigger, making certain text bigger, adjusting brightness and colour settings, and changing the size and appearance of the mouse pointer and text cursor. You can also access the magnifier here. Personally, I find the magnifier fiddly and irritating, but it’s meant to be useful if you want to zoom in on certain parts of the screen. Everyone’s different, so it’s best to experiment with these settings to figure out what improves things, but personally I find that reducing the screen brightness and increasing the size of everything (including the mouse pointer and text cursor) helps a lot.

Something which I’m currently finding frustrating is that increasing the size of everything seems to mean that some things are then too big (e.g. the main window in Outlook), whereas other things (e.g. the left-hand menu bar in Outlook and the File Explorer window) are still too small. I haven’t been able to find a solution to this, so again, if anyone out there can offer any advice, please share it in the comments below!

Another drawback to making everything bigger is that some software clearly simply can’t cope with this, which means that certain fields simply drop off the visible area of the screen and you can’t see them at all. This can be really annoying, particularly as often I only realise it’s happened because I remember what should be there. Again, I haven’t found any solution to this.

Excel

Having been swearing under my breath at Excel for months, I was quite excited when a friend sent me this article, with the heading “How to enable dark mode in Microsoft Excel, including a spreadsheet’s cells”: https://www.businessinsider.com/guides/tech/excel-dark-mode?r=US&IR=T. I found that the first part of the article, setting out how to change the main interface of Excel to dark mode, works; but I encountered difficulties with the second part, which supposedly explains how to change the spreadsheet itself to dark mode. The only way around this, for me, has been as follows:

1. Select the entire spreadsheet.
2. Click “Home” and find the “Fill colour” button, below the font option. Change this to black.
3. Next to this should be a “Font colour” option. Change this to white.

If you need to see the gridlines in the spreadsheet (I find this makes it easier to read), you then need to do the following:

1. Select the entire spreadsheet.
2. Click “File”, then “Options” (may be under the menu item “More”).
3. Click “Advanced” in the left-hand menu bar.
4. Scroll down to “Display options for this worksheet” and make sure the “Show gridlines” option is checked.
5. In the “Gridline colour” box, select white.

Of course, this will need to be done in every Excel spreadsheet you want to be able to read more easily which is, quite frankly, a pain in the arse. But at least it’s better than that ghastly screen of glaring white with indecipherable pale grey text. If anyone knows of a better method which would prompt all spreadsheets to immediately open in dark mode, please let me know! In the meantime, I’ll keep swearing at Microsoft every time I need to use Excel.

Dark mode add-on to web browser

Here’s a link to the dark mode add-on I use: https://microsoftedge.microsoft.com/addons/detail/dark-reader/ifoakfbpdcdoeenechcleahebpibofpc. Installing this means that websites should automatically appear in dark mode, making them easier to read as there’s far less glare from the screen, and increased contrast between the text and the background. Irritatingly, it doesn’t work with everything, and sometimes works with some parts of websites but not others. But again, it’s better than nothing.

PDF documents

I continue to be utterly frustrated by PDF documents, which is a problem either when I need to read them or when I need to create or amend them. There seems to be no way of making them viewable in dark mode. I chased around in circles for weeks on various online articles and email messages to the Helpdesk at my workplace and eventually just gave up. It was either that or hurl the computer out of the window, which I suspected wouldn’t be an ideal solution. So, again, if anyone can offer any help or advice about this or anything else, please shout!

Sight loss in literature: “Shakespeare: The Man who Pays the Rent”

Now, technically this book doesn’t really fit into my sight loss in literature section, which I began with the intention of exploring depictions of fictional characters with sight loss as I thought it would be interesting. It’s since expanded a little in that I’ve written about a couple of non-fiction books too. This one falls into that category – a collection of Judi Dench’s stories of every Shakespeare character she’s played throughout her long career, as told to the actor and theatre director, Brendan O’Hea. However it’s not, strictly speaking, about sight loss. The reason I’m including it here is threefold. Firstly, it’s a fascinating, eye-opening (see what I did there?), and at times hilarious read and anyone interested in Shakespeare and the theatre should grab a copy. Secondly, the book includes illustrations by Judi Dench. Apparently she’s always loved to paint and draw but her eyesight has severely deteriorated in recent years due to age-related macular degeneration (AMD). She was persuaded to include some of her most recent illustrations in the book when a friend suggested that they might inspire other people with visual impairments to start painting, which I think was a brilliant idea. And thirdly, Judi Dench holds a somewhat legendary place within my family.

You see, Judi Dench taught my mum how to die. Somewhat fortunately for me, she clearly didn’t make a very good job of it. Or maybe my mum wasn’t a very attentive pupil. Who knows. But the story goes that a long, long, long time ago when my mum was at teacher training college and taking a drama subsidiary course, Judi Dench and John Neville (another actor) were performing at the local theatre and spent some time working alongside the students on a performance of “Oedipus Rex”. It was during this time that Judi Dench taught my mum how to die. I can remember that, as teenagers, my sister and I were fascinated by this and entreated her to give us a demo, to which she replied with some horror, “I can’t do that now with my back!”. Humph. I mean, she could have taken notes at least! Looking back, I can’t help feeling considerable regret at this missed opportunity. The ability to die at will would have come in terribly handy in PE lessons at school. Instead of one of the ghastly in-crowd kids scornfully grassing me up yet again with: “Miss! Emma won’t play – she’s refusing to hit the rounders ball!” (I might add here that I couldn’t manage to hit the sodding ball even when I actually tried), I’d be able to convincingly collapse in a heap to concerned screams of, “Miss – come quickly, Emma’s DIED!“.

Anyway – back to the book. The sub-title, “The Man who Pays the Rent” is a nod to how Judi Dench and her husband, Michael Williams (who was also an actor), referred to Shakespeare. In the introduction, Brendan O’Hea explains that it was never supposed to be a book. The plan had been for him to record Judi Dench talking about all the Shakespeare parts she’s ever played and offer it to the archive department at Shakespeare’s Globe for posterity. But a friend of her grandson was intrigued to know more after overhearing one of their discussions, which resulted in him wondering if more people might be interested. As a result, the format of the book is like an interview, with questions and/or comments in italics from Brendan O’Hea, followed by Judi Dench’s replies and anecdotes. When reading it, I could often hear her voice in my head – I guess because I’ve listened to her a fair amount over the years, particularly on audio recordings of the Renaissance Theatre Company’s versions of “Hamlet”, “Romeo and Juliet”, and “King Lear” which I still have on [gasp] cassette tape. (I wonder if they still work? I shall have to dig them out again and have a go…)

The book is split into chapters for each play, within which are separate sections for each of the characters she’s played. These are interspersed with smaller, more general sections with headings such as “Company”, “Critics”, and “Changing Times”. So many stories made me laugh aloud – like the time she had to do a costume change but forgot to put the skirt on until about a minute before she was due on stage again, causing Kenneth Branagh to fall about laughing in the wings as her dresser frantically raced for the forgotten garment and helped her into it. There are also some classic one-liners. For example, when discussing a film of “Richard III”: “All I remember is being in a wood with Benedict Cumberbatch and shouting at him when he was on his horse.” And, in classic Shakespeare style, she relates a couple of absolutely hilarious cases of mistaken identity. I won’t reveal any spoilers here, but they did make me first gasp and then laugh aloud!

Only once does she reference her sight loss. She’s talking about playing Paulina in “The Winter’s Tale”, opposite Kenneth Branagh, and referring to the last scene, set in a chapel in Paulina’s house: “And this was the scene – because of my dreadful eyesight – where, one night, I thought I was talking to Ken, but after we came offstage he said, ‘Jude, if you had turned your body forty-five degrees and looked eight foot to your right, you would’ve been talking to me instead of the proscenium arch.'” It made me wonder what methods she’s adopted in order to cope with her sight loss. Lighting in theatres can vary hugely, and of course modern theatres versus much older buildings must each have their own challenges in terms of how easy they are to navigate with limited vision.  

The illustrations, scattered throughout the book, contribute to its informal feel. There are sketches of characters – Lady Macbeth with her candle, Bottom in “A Midsummer Night’s Dream”, Romeo and Juliet in the balcony scene, and Shakespeare himself with his paper and quill. Some drawings are more detailed than others, and I like the way that some of them are very simple – with just a few lines to indicate the flow of a dress, for example. As someone who, before my eye issues began, used to paint in painstaking detail, I certainly found her illustrations encouraging.

I’ve only actually seen Judi Dench on the stage once, and that was years ago at Stratford, when she was performing in “The Merry Wives of Windsor” – I still have the ticket. My sister and I had bought tickets for us all as a birthday surprise for my mum. Somewhat annoyingly, I can’t remember a great deal about it now, although she does talk about it in the book of course, which jogged my memory somewhat. Sadly, she didn’t spot my mum in the audience, recognise her as her long-lost pupil of how to stage a convincing death and promptly invite her backstage for a good old natter [sigh]. Still, if anyone reading this blog post happens to know Judi Dench, could you maybe ask her if she’d be willing to give me a few lessons sometime? I can’t help feeling that being able to successfully pull off a dramatic faint (perhaps not an actual death in this case) would work wonders in getting me to the front of the queue in the eye clinics…

Welcome to 2024, and the Good Eye Intervention Awards!

Well, here we are again at the start of a new year set out before us like a beautiful crisp white blank page – just waiting for us to scribble all over it in the style of Jackson Pollock. I did briefly consider how I might endeavour to make my life efforts resemble more the work of Mondrian, or perhaps Vermeer, via the making of various new year’s resolutions. There are plenty of suggestions to choose from around this time of year: exercise more (too vague); sign up to Veganuary (absolutely no chance am I giving up proper cheese); lose weight (I’d probably die, plus see two previous reasons for not doing so); sign up to Dry January (irrelevant as teetotal); get a new job (as a visually impaired woman the wrong side of 45, I’m not fancying my chances much on this one); start writing a “gratitude journal” (oh sod off!); etc. etc. Of course, I could go for something more tailored to my own situation… for example: improve sleep (already tried multiple methods of doing this, none of which really appear to have much effect); stop worrying (I suspect it would be far easier to stop breathing… and ironically would also result in success for that particular resolution); or perhaps move house to somewhere with good public transport links (am really in need of a long-lost rich relative to die and leave me an inheritance so that I can afford to do this, but I suspect it’s probably unlikely, based on my previous extensive genealogical research).

So it seems that my plan is to basically keep pootling along and trying to make the best of things as I go. I have, however, vaguely resolved to listen to more music (which will possibly result in the unintended consequence of listening to less of “those depressing political podcasts”, as my sister terms them, and read more books this year. Yes, even more books than I usually manage to steamroller through in a year, which may somewhat alarm the other member of the Two Person Book Group I belong to. I might also start awarding people points for Good Eye Interventions – i.e. to people who do things which are useful for visually impaired people. To kick things off, I have two Good Eye Intervention Awards I’d like to present, coming out of the Christmas holidays.

The first is to staff at Waterloo East station. When returning home to Kent after Christmas, we were delayed on the trains to London Waterloo and therefore missed our connection from Waterloo East for the second leg of the journey. It was blowing an absolute hoolie and so we sought refuge in the marginally warmer waiting room on the platform, entertained by a curious pigeon who seemed to be considering boarding various trains before getting cold claws and flying off. In a nod to the festive season, the waiting room was decorated with a Christmas tree. The Christmas tree had NO LIGHTS on it. None at all! It was truly a sight for sore eyes – fabulous! So, ladies and gents, put your hands together and give a huge round of applause to the staff at Waterloo East! (We’ll ignore the fact that here in the UK, our energy bills are currently so horrifically high that skipping the lights was potentially a cost-saving exercise.)

My second nomination for a Good Eye Intervention Award goes to… [pauses for dramatic effect]… one of the residents in my sister’s workplace, who shall be known as The Christmas Fairy. Apparently, you see, she loves Christmas and goes to all sorts of efforts to embrace the festive season. Tasteful efforts, I might add. I don’t think she’s the sort of person who would install one of those ghastly blow-up Father Christmases in the front garden, or wear a Christmas jumper with a flashing red-nosed reindeer on the front. She gave me, as a Christmas gift, two brightly coloured pens (so that I’d see them easily on the desk, she said) which have a little magnifying glass set into the side of them and a tiny LED light which can be turned on via a little sliding switch. Now, obviously you can’t use the pen whilst simultaneously using the light and magnifier, but they’re clearly not designed for that anyway. But they’ll be great for reading small things like crossword clues in a newspaper, and the odd paper-based thing at work. As well as feeling encouraged by their potential practical use, I was very touched by her kind thoughtfulness in giving me such a gift. So, ladies and gents, could you please gather together and raise your mugs of tea in a toast to The Christmas Fairy! [Cue sound of applause, stamping feet, and whistles of appreciation.]

Should anyone like to obtain their own magnifying light-up pen, the information I received with them tells me that they are NightHawk pens, made by the company Bell+Howell.

If any of my eye buddies have nominations for a Good Eye Intervention Award, please let me know. All nominations will be carefully considered by the Awarding Committee (that’s me) and details published on RD Ramblings.

Let the countdown begin!

I wouldn’t go so far as to say that I’m excited but I’m definitely looking forward to the big day, which isn’t too far away now – hurrah! It’s odd really, but as a child I don’t remember being particularly fussed about it. But as an adult, with each passing year, the actual day becomes more momentous. A glimmer of hope in our dark, dreary, and frequently depressing world. A time to look to the future with a sliver of optimism. For, as that well-known jingle goes: “brighter days are coming!”.

Oh dear, no, no, no… I’m not talking about Christmas! [pauses to snort in derision] Deary me, no – all that sickening commercialism, those ghastly glary lights everywhere, and constant quizzing from people as to whether I’m “ready yet”. (I’m ready for all the sodding lights to be taken down, that’s for sure!) No… what I’m referring to here is the Winter Solstice! The shortest day of the year, after which point we’ll start to regain some much longed-for minutes of precious daylight. Slowly. Very slowly, in fact, and unfortunately far too slowly for my liking. But at least it’s a start. From a psychological point of view, it helps me to know that we’ve made it past the darkest day and are heading in the right direction. Yes, I’m well aware of the fact that there may be snow, ice, and bitterly cold temperatures in January, February, and indeed March [pauses to shake fist at skies and bellow: “just hold it in, alright?!”], but at least it’ll be getting lighter.

I’ve never been a fan of the shorter days, but since my eye issues began and particularly in the past year since the cataracts in my good eye have been making themselves known, my general dislike of the winter months has morphed into a passionate detestation, matched only by the utter disdain I feel for the Tory party and Donald Trump. On the days I have to go into the office I drag myself, shivering, out of bed and indulge in a spot of lalochezia. Then, over breakfast, I keep an anxious eye on the gloomy state of the sky, wondering if it’s going to get light enough to drive into work. In the afternoons I start peering out of the office window from about 3pm onwards, worrying about the drive home. Thankfully, my line manager has allowed me some flexibility in terms of start and finish times in the low light, but even so it’s quite stressful.

I know that many of my eye buddies feel similarly about this time of year. There’s recently been a flurry of posts on the RD support group on Facebook from people worrying about driving in the dark / unable to drive in the dark / feeling bad about having to rely on other people for lifts. When, back in October, I commented to one of my eye buddies that the approach of the shortening days felt like being on the verge of a prison sentence, he replied with: “Don’t talk about the days getting shorter!!! I know all that stress”, before following up with: “I HATE THE DARK!”. So at least I’m not the only one, I s’pose.

I’ve always been under the impression that the shortest day of the year is 21 December, so I was somewhat flummoxed to discover that this year it’s actually 22 December. Apparently, the shortest day can occur on 20th, 21st, 22nd, or 23 December, but it’s usually on the 21st. The word ‘solstice’ comes from the Latin, ‘solstitium’, meaning ‘the sun stands still’ because the apparent movement of the sun’s path north or south stops before changing direction. This happens when either one of the earth’s poles reaches its maximum tilt away from the sun. I’m not going to attempt to explain any more about that, because I’m pretty sure it involves Maths. The exact time of the Winter Solstice in the UK this year will be 3:27am. I might throw a mini party if I’m awake, which is reasonably likely thanks to current regular visits from my dear Lady Insomnia. Apparently, on this date we’ll get approximately seven hours and 49 minutes of daylight. Crap, isn’t it? But don’t worry, cos it’ll start getting better after that!

When I say it’ll start getting better, as mentioned previously this, sadly, won’t happen immediately. You’d think that on the shortest day of the year, it’d be reasonable to assume that the sun would rise later than on any other day and set earlier, wouldn’t you? But it’s not that simple. The earliest sunsets in the year take place about a week before the solstice, and the latest sunrises occur in early January. We gain more light because the sun starts to set ever so slightly later each evening at first, and this outweighs the still diminishing morning light. I mean, I want more light at both ends of the day really, but I s’pose I’ll just have to be patient.

Another weird thing I’ve discovered recently is that we appear to have two different methods of determining the start of winter. The astronomical calendar, which is based on the rotation of the earth around the sun, states that winter starts on the day of the winter solstice and ends on 20 March 2024. But the meteorological calendar marks the first day of winter as 1 December and the last day on 1 March. I think I’m going to go with the latter definition, as that means it’ll end sooner.

It’s so irritating that we have to go through this gloomy misery every year. Personally, I vote for hibernation. From, say, mid-November through to the start of March. That would do the trick, wouldn’t it? If we could all just retreat to our homes with a pile of books and a nice selection of tea and biscuits, emerging once it starts getting lighter and warmer… that seems like a perfectly reasonable method of coping with the situation, don’t you think? Yes, yes, I know that hibernation traditionally involves actually sleeping, but I can barely make it through the night so I don’t think three and a half months is going to work, is it? Maybe we can lobby for this plan at the same time as getting the Tories out at the next election. Who’s with me? Oh, and do let me know what you’d take with you into your own personal hibernation…

Tales of train travel and another trip to the optometrist’s

I recently had a few days of annual leave to go and visit my family. As driving is becoming more challenging due to the sodding cataracts in my good eye, I decided to simply remove that particular stress from the equation and catch the train instead. Now, getting the train is a bit of a palarver, because I don’t live within walking distance of the train station, which means I either have to rely on the bus service and put up with a longer journey whilst also feeling slightly queasy throughout, or grit my teeth and shell out for a taxi. As well as that, the train fare is considerably more expensive than the cost in petrol. But anyway, I decided I’d just have to hang the expense for the benefit of avoiding the stress and visual exhaustion of a long drive.

I contemplated the bus, but eventually caved in and got a taxi to the station. Weirdly, the taxi driver was the same one who had driven me there about a year ago, when I was going to Moorfields for an appointment due to my cataracts first becoming bothersome. “How are your eyes – have they managed to stabalise them?”, he asked me cheerily. “No”, I replied gloomily, “they’re getting worse”. He sympathised, and I moved on to other topics of conversation before I managed to depress him as well as myself.

Arriving at the station and wandering down the platform, I suddenly spotted a woman with long brown hair being led towards me by a guide dog. “Oh!”, I exclaimed to myself. It was the friend of one of my old uni friends, whom I’d actually exchanged Facebook messages with about visual impairment, but had never actually met. I bit the bullet and called out her name before rapidly following up with: “It’s Emma – Vicky’s friend!” “Oooh!”, she replied, “Hello – how are you?!” We proceeded to have a chat about where we were both heading, cataracts, silicone oil (she also had a detached retina in the past and has had silicone oil in place ever since), the futility of visual field tests for patients who can’t see to count fingers, the variability of the sight loss journey for those born blind versus those who experience sight loss later in life, and losing a parent in the supermarket. After a while, she explained that she needed to move further down the platform as her guide dog was accustomed to being further along, and I continued along the platform the other way to check my train times.

As I walked along, I heard, “BEEP BEEP BEEP” and realised that there was a lady on an electric mobility scooter, seemingly stuck half in and half out of the disabled toilet with the door wedged against her. There were plenty of people on the platform but no-one seemed to have noticed that she was having trouble. I pulled the door open and asked her, “Can I help you? Are you trying to get in or out?” “I’m trying to get out!”, she said, before thanking me for holding the door as she did a spot of nifty moving back and forth so that she was able to reverse safely out.

“Well”, I thought to myself as my train arrived and I settled myself down in a window seat, “that was an eventful start!”. The next hour passed fairly quietly, although I wasn’t too chuffed that the train gradually became more and more full. Eventually there were people standing all the way down the aisle and the guard kept asking people to please keep any seats free of luggage to enable passengers to sit down, as he apologised for the busy service. Not long after a stop at which even more people crammed themselves onto the heaving train and it set off again, there was suddenly an urgent exclamation: “Can someone spare a seat please – there’s someone who’s not well here!” Before I really knew what was happening, the chap sitting next to me tapping away at his laptop had vacated his seat and a young woman was hustled into his place. My first thought was, “Oh bloody hell, I know hardly anything about first aid!” Fortunately, there was another call from the further down the train, “It’s okay – can I get through please, I’m a doctor!”, and a man appeared at her side, asking medical questions and checking her pulse. Fortunately, she was with someone whom I presumed to be her dad, who explained that she had meniere’s disease and they were on their way up to London for a hospital appointment. After a few minutes, she fortunately started to look a little better, had a drink of water, and began to talk a bit. She turned to me and apologised (I told her not to worry about it), explaining that she’d been feeling rough for the past few days and had been unable to go out or do very much. She told me that people just take their health for granted until something goes wrong and expressed her frustration that she just wanted to feel well again, and be able to do the things she used to. I nodded in sympathetic agreement, thinking, “Yep, I can absolutely relate to those feelings”. It wasn’t the time to launch into precisely why I could relate so much to her words though, so instead I attempted to make her feel a bit better by telling her about my uncle who had meniere’s disease, which was controlled pretty well for most of his life. When I reached my destination, I wished her all the best before squeezing past everyone and disembarking. I sometimes think how odd life is in those moments when you’re party to a tiny snippet of someone else’s story and you never get to hear how it worked out. I hope she was okay and that the hospital managed to improve things for her.

Fortunately, there were no other medical emergencies for the remainder of the journey, unless you count my realisation that I really should have made space in my backpack for some lunch as I suddenly found myself ravenously hungry with only two emergency cereal bars to resort to as sustenance. Luckily, there were no issues on my journey home a few days later, either. However, my time away had meant that I hadn’t driven for a few days and unfortunately my next drive into work was on a particularly ghastly day. It had been pouring with rain so the road was scattered with puddles, the early morning sun was low and bright, meaning there was glare from both the sun and from the wet road. Despite having recently had my visual acuity checked at Moorfields and doing the 20 metre number plate test a few days previously (and passing both), the horrible drive made me question my vision all over again. I sighed with frustration as I rang my optometrist and managed to get a cancellation appointment for another check.

A couple of days later, I was once more updating my friendly optometrist with the latest on my sodding eyes as I set out my intentions for the appointment as follows: a) to check that I still met eyesight requirements for driving, and b) to determine whether it might be possible to improve my vision with yet another new left lens. He seemed to think this was all perfectly sensible, although when I asked, “Am I your most paranoid patient?”, he confirmed, “Yes!”, without a second’s hesitation. Ask a silly question, I suppose…

In giving him an account of my most recent Moorfields appointment, I bewailed the fact that my consultant and other ophthalmologists I’ve seen have refused to advise me on when the best time would be for me to undergo cataract surgery, telling me that it’s my decision. “What would you do?”, I asked him, “Tell me what you think – don’t be like the ophthalmologists!” And he did. He said that he has great faith in modern medicine and that successful cataract surgery would vastly improve my quality of life – it should enable me to return to very good visual acuity in my left eye and eradicate the ghosting and blurriness, as well as the glare from lights. His advice was to continue trying to correct my vision with glasses, but once it can no longer be corrected to meet eyesight requirements for driving, then to get a referral back to the cataract department at Moorfields. I agreed that this seemed to be a sensible approach. It was also oddly reassuring that he talked about quality of life, as I do often question myself as to whether I’m being a drama queen over all this eyesight crap. It would appear that I’m not.

The upshot of the appointment was that I still meet eyesight requirements for driving, but I’m only just within the limit (which I already knew, to be fair). The good news is that he was able to improve it slightly with a prescription for a new left lens. The bad news is that the new left lens is eye-wateringly expensive. Well, maybe I’m being a drama queen there. It could be worse, I guess. I told him that I’d just go for it and not think about the expense, because fortunately I have savings and that’s what savings are for. “Savings are for holidays!”, he corrected me, clearly horrified at the prospect of spending them on anything else. “Oh, I haven’t had a holiday since my retina detached whilst I was on holiday in Berlin back in 2014!”, I replied. So that settles it – I’m not going to feel guilty about shelling out for another new lens.

The cost has got me thinking though. I might suggest that my optometrist’s practice might like to consider introducing some kind of loyalty scheme. You know, like Sainsbury’s nectar points, perhaps. They could call them “winks”. For every £10 people spend on eye tests or glasses/contact lenses, they could be awarded one wink. Then, once they’ve accumulated, say, 40 winks, they could be redeemed as part payment for a subsequent eye test or new lens. Perhaps 40% off, for example, to effectively “snooze” part of the payment. I’m definitely going to suggest this when I go in to pick my specs up…

Haunted by ghosting

I like to think of myself as a fairly level-headed, logical person, with little time for such things as conspiracy theories, the paranormal, or Tory propaganda. As we approach Halloween (get out your Liz Truss costumes, folks!) I shall no doubt, as usual, be shaking my head and metaphorically rolling my eyes at the abundance of pointless plastic paraphernalia, wasted innards of perfectly edible pumpkins, and the utter stupidity of some people endangering their sight by wearing coloured contact lenses. (They can cause a whole host of serious eye conditions, including heavy metal poisoning, corneal abrasions, swelling, infection, and vision loss.) On 31 October itself, I shall be hoping for an evening of torrential rain as I carefully switch off the lights at the front of my house and ignore any knocks of greedy children on my front door.

However, dear Reader, despite my common-sense approach to such irritations, I have a confession to make. Come closer. [Crooks a finger before glancing furtively around and lowering voice in confessional manner.] I’m being haunted. Daily! In fact, mostly during the day actually, as fortunately the nightmares don’t occur every night. But during my waking hours, every single day without fail, I see things [uttered with feeling, in classic “Sixth Sense” manner]. As I’m doing my work, sitting at the computer, if I happen to glance down at the keyboard at a certain angle I’ll notice, for example, the ‘S’ key starts to morph towards the ‘D’. The ‘D’ then obviously gets scared and tries to leg it to hide behind the ‘F’. The ‘F’ starts to bolt towards the ‘G’… and… STOP! I look up, back at the screen, and resume touch-typing.

From my home desk, looking out of the window upon the lush green grassy square beyond the hedge, I spot a couple of seagulls, stamping determinedly for worms after a rain shower. The worms clearly aren’t playing ball, as I watch the seagulls move in a beautifully synchronised walk, to a fresh patch of grass where they start their stampy dance again. Watching their movements, I realise that one seagull is a shadowy version of the other. A ghost seagull. Or a seagullghost. I blink, and look again. It’s still there, the seagullghost. I peer through my fingers, using them to mimic the pinhole effect. The seagullghost disappears. Now there’s only one seagull. I take my hand away from my eye. The seagullghost returns. I bang loudly on the window, crying, “SHOOOO!” The seagull launches itself into the air and flaps lazily across the rooftops; its ghost trailing along behind it, as if attached by invisible wires.

I then spot a tall and fairly bulky chap, strolling down the pavement outside the houses on the other side of the green. OMG – there’s someone right behind him, stalking him! Possibly on the verge of grabbing him and doing him some kind of injury! Perhaps he’s concealing a knife or a baseball bat (what even IS a baseball bat?). Wait… no… it’s just another ghost behind him. Ghost man. A pale replica of the real man. I wonder if he’d be freaked out if I went and told him I could see a ghost following him? Better not, I decided.

It’s not just seagulls and men which have ghosts. It’s also blackbirds and robins, dogs and cats, chimney pots and gables, lamp posts and the moon. For some reason, I feel particularly distressed when I see moonghost. The appearance of ghosts seems to depend on how small or narrow the object or animal is, or rather how small or narrow it appears in relation to its distance from me. For example, tree trunks have ghosts, but the trees themselves do not. I just see one beautiful canopy of greenery – albeit somewhat more blurry and less saturated in colour than I know it should be.

On some days, I reluctantly accept the ghosts and admit that I just need to live with them. On other days, they haunt me and make me feel miserable. Recently, I spent about ten minutes staring out of the window at my rotary washing line in the garden, wondering what the hell that weird thing was, stuck to the side of it. I eventually realised that it was just part of the pole. Or rather, the ghosting of part of the pole. Admittedly it was first thing in the morning and I hadn’t put my glasses on yet. But still – it wasn’t great. So sometimes the ghosting is baffling, sometimes frustrating, but it’s always accompanied by a heart-sinking sadness for the loss of sharp vision.

For those readers who haven’t worked it out yet and may be drawing the conclusion that I’ve finally gone completely bonkers: I haven’t. Not yet, anyway. Or, at least, no more bonkers than is customary for me. I am really seeing this ghosting. You can have a look at some images which attempt to describe what it’s like, in my blog post: “If you see something that doesn’t look right…” The ghosting is caused by cataracts, you see. As light enters the eye through the pupil, it passes through the lens which focusses it on the retina. But instead of being focused neatly on the retina, the light is basically hitting the cataract(s) on/in the lens and scattering, causing this additional pale image. The human lens is approximately 9-10mm in diameter. I know that my cataracts aren’t currently taking up all that much space on the lens, but for something so tiny they’re causing an awful lot of anguish. The ghosting is quite literally haunting me. “Who you gonna call… CATARACT SURGEON!” doesn’t have quite the same ring to it though, does it? Particularly as what i would specifically like to call is: “EXPERIENCED SPECIALIST CATARACT SURGEON WITH VITREO-RETINAL CAPABILITY AND A 100% SURGICAL SUCCESS RATE!” Hmm. And now I appear to have the “Ghostbusters” theme tune stuck in my head on repeat. (“I ain’t afraid of no ghost!” Go on, open it up and sing along… you know you want to.)

Note: If any experienced specialist cataract surgeons with VR capability happen to read this, please do get in touch.

Visual impairment and isolation

A couple of months or so ago, I volunteered to take part in a research project about – among other things – experiences of isolation in the visually impaired community. It was really interesting, and got me thinking more about how to actually define isolation, and how it manifests itself in the context of visual impairment.

The Oxford English Dictionary (which, ironically, doesn’t seem to be fully accessible online when using a dark mode addon in the internet browser) defines isolation as: “The action of isolating; the fact or condition of being isolated or standing alone; separation from other things or persons; solitariness.” Interestingly, this doesn’t necessarily seem to indicate that isolation is a negative thing – I guess we’re back to that old argument that spending time alone doesn’t necessarily mean that a person is lonely. But reading on, some of the examples given to explain the meaning of isolation do seem to be somewhat grim: “exiles in the mines”, “complete separation of patients with contagious or infectious diseases”, and “the separation of a person or thing from its normal environment or context”. These all clearly indicate something unpleasant which has been forced on a person against their will.

The most obvious recent examples of isolation which we can all relate to are the instances of national lockdown which were brought in to deal with the Covid-19 pandemic (apart form those partying the nights away in Downing Street, of course). Particularly the very first lockdown beginning in March 2020 when, here in the UK, unless we were categorised as an essential worker we were only permitted to leave our houses for essential items such as food or medical supplies, or for our hour of daily exercise. Those weeks on end where we weren’t allowed to visit anyone either inside or outside the house, before the “support bubbles” were introduced was an extremely difficult time for many people, for a variety of reasons. But in terms of feeling isolated, personally I’ve felt far more isolated since the vision in my good eye has been deteriorating in the past few months than I ever did during the lockdowns. Perhaps it’s because I wasn’t particularly worried about driving back then, and so I knew that when the lockdowns lifted I would be able to get in my car without a second thought and head up to visit my family in Surrey. Or maybe it’s because I wasn’t experiencing any difficulties using certain software on the computer at that stage. Or possibly it’s because everyone was experiencing the lockdowns (albeit in different ways) and so it felt like more of a shared experience, meaning that people were often more supportive. Who knows. But it’s interesting to make comparisons in terms of feelings of isolation.

I’m sure that people with visual impairments would all cite different examples of isolation, and it would be interesting to hear fellow eye buddies’ thoughts on this. I know from the retinal detachment support group that a lot of us feel isolated as a result of not being able to provide those closest to us with a true picture of how we’re seeing the world. Or, indeed, how we’re feeling about the way we’re seeing the world. Many of us have a strong sense that we need to just plough on with things, as we’re always very aware that “it could be worse!”. But ploughing on doesn’t mean it’s not a struggle at times. We can attempt to describe our vision, both in words and through images, but it’s impossible to convey a really accurate impression of what it’s like dealing with our own personal waffy vision day after day. And that inability to show people what it’s really like can be hugely frustrating and isolating.

The major cause of feelings of isolation for me is probably the constant underlying fear of what’s going to happen to my vision in the future – whether it be two weeks hence or twenty years. Sometimes I tell myself that this is foolish because, after all, none of us know what’s going to happen to us and something grim could land on any one of us out of the blue at any time. But I suppose that fear is just more tangible for those of us who are already dealing with something like visual impairment.

Another issue which causes feelings of isolation is driving. Or rather, not driving. Being advised not to drive in the dark doesn’t generally cause me huge issues as my social life more resembles more that of a hermit than a manic clubber; but there are some occasions on which it’s a complete pain in the backside, particularly as public transport where I live is so poor. Having to avoid driving in low light is considerably more problematic, and I’m absolutely dreading the rapidly approaching winter with its very short days. I have no idea for how long I’ll be able to continue driving, and again, this is a very frightening and isolating experience, especially when living alone.

In the workplace, feelings of isolation are often heightened due to a lack of accessibility. I had a bit of a rant about this fairly recently in the blog post “Digital (in)accessibility“, so I won’t blather on about it again here. Suffice it to say that every week there are fresh examples of software not being fully accessible and/or colleagues either ignoring what I’ve already explained to them about certain accessibility issues or – what’s worse – acknowledging that I can’t see certain things properly and carrying on regardless. I sometimes wonder how they would act towards a colleague in a wheelchair. I suspect a similar approach: “I know you can’t walk up stairs but this meeting’s going to be on the first floor, so you’ll just have to sit at the bottom and listen” wouldn’t go down terribly well.

Another issue in the workplace is that it’s constantly necessary to request certain things in an accessible format, or when new work is planned to check whether it’s going to be accessible. I’m sure my colleagues are sick to the back teeth of me piping up with the query: “Will that be accessible?”, or “Does that work in dark mode?”, or “Please can you send me that as a separate document so that I can access it and amend the settings to make it readable?”. But if I don’t continually ask these questions or point out issues with accessibility, I have trouble seeing things and can’t get on with my work effectively. So why do I so often feel the need to add, “sorry”, when I make an entirely reasonable request about accessibility? I often feel as if I’m being a pain, or nagging, or banging on about accessibility yet again; and this also contributes to feelings of isolation. It’s particularly frustrating as a good number of the issues I experience at work could be easily solved. It’s just that often, people simply can’t be arsed to check whether things are properly accessible.

Anyway… time for me to stop ranting and seek solace with a cup of tea and biscuits. Fellow eye buddies: let me know your experiences and how you cope with all this. Fully sighted people: however irritated you feel by requests related to accessibility, be assured that your levels of irritation are likely to be considerably less than the levels experienced by those of us who can’t see the damn things properly. Please try and be more understanding and accommodating.

Pattern of perpetual appointment postponement paused!

Last Friday, before my early morning Moorfields appointment on Monday, I was braced for the inevitable last-minute ‘phone call telling me that they were very sorry but they needed to postpone my appointment. I was at work and the office was remarkably quiet that day with only two of us in (bliss!), meaning that the silence allowed me to hear every buzz of my ‘phone, causing me to jump accordingly each time in case it turned out to be the dreaded call. (I really should switch all those news alerts off.) When I left the office to go to the loo or make a drink, I obsessively checked my ‘phone each time I returned, fully expecting to see a missed call from a London number, followed by a voicemail from the hospital which I wouldn’t be able to argue with. I’d already debated with myself as to just how much I should attempt to protest and try and convince them not to postpone me yet again. After all, I’d recently had an optometrist’s appointment and was pretty sure that there had been no deterioration in my vision since then. Perhaps I should just accept it this time when they rang to postpone, I mused to myself, as I stared anxiously at my ‘phone for the umpteenth time.

Office tedium completed, I carefully drove home, keeping an ear out in case my ‘phone rang on the way (this happened once before, when I mistakenly thought my appointment was safe). I parked up and before even removing my seatbelt, double-checked that there had been no call. Stomping into the house and sticking the kettle on, I nibbled at a biscuit whilst trying to ignore the crescendos of borborygmus. I’m sure it was the pre-appointment stress which had been playing havoc with my belly all day. On the dot of 5pm, I received a WhatsApp message from my sister: “No phone call then…?” “Nope!”, I replied, “Have been in a state of agitated anticipation for one all bloody day! Assume they won’t ring and postpone after 5pm…?!!” Just in case they did, I kept my ‘phone in my pocket as I cleaned the bathroom. By 6pm, I decided that a minor miracle had occurred: for the first time since 2019, Moorfields hadn’t rung to postpone my vitreo-retinal clinic appointment at the last minute.

After a four and a half hour drive up to Surrey the following day on what turned out to be the hottest day of the year (a journey which usually takes up to two hours, tops), I was beginning to wish that they had postponed my appointment after all. But I arrived in one piece, albeit somewhat frazzled and tired. Monday morning arrived, and I stumped up the milk-the-commuter fare so that my sister and I could enjoy standing room only on the packed train alongside our expressionless, silent, screen-staring commuters. These seemingly almost inanimate beings only sprang into life as the train pulled into its final destination, whereupon they leapt up and made for the doors in a pack-like stampede. Their behaviour suggested an overwhelming eagerness to get to their jobs, which their facial expressions belied.

We made it to Moorfields with just ten minutes to spare, and settled down in the basement clinic. The nurse called me pretty quickly for the initial checks and dilation drops. It was a different nook to the one I’m usually taken to for this, and the Snellen chart screen (placed high on the wall) was at a different angle. I struggled to focus on the letters, and started to panic as I tried to read them. Nurses vary hugely in their approach when administering the visual acuity check. Some will be very patient and start me off on an easy line, working up to the smaller rows of letters. When I falter, or say, “I think that’s an S”, or “that one’s a letter with straight edges”, they’ll make encouraging noises and confirm when I get things right. They’ll sometimes tell me to take my time, or advise me to blink a few times and try again. But others will dive straight in and clearly just want to rush me through and get it done. It was the latter approach that I experienced on Monday. When the nurse was interrupted by someone half way through the test, and went out of the room for a few minutes, I was sorely tempted to peep through the pinholes in order to see the chart more clearly. But I managed to refrain, and instead sat there blinking frantically whilst I waited for her to reappear. Asking her for the visual acuity readings afterwards, she told me that that my left eye was 6/12, and 6/9 with pinhole. “But it was 6/7.5 at the optometrist’s only a month and a half ago?!”, I told her in confusion. She merely shrugged her shoulders, telling me that the doctor would speak to me about it. Pressures next, which were fine, and then stinging dilation drops. I swear they sting more when my eyes are tired. Then another wait, until I was called in by an ophthalmologist.

He didn’t seem overly concerned by the visual acuity reading of 6/12, explaining that it can vary. He proceeded with the slit lamp examination: “Look up… look up and left… look left… look down and left…” etc. Usually, at this point my internal voice is screaming: “PLEASE LET IT BE OKAY, PLEASE LET IT BE OKAY, PLEASE LET IT BE OKAY” on repeat as I cross my fingers under the machine and my heart pounds. But this time I was distracted by hearing another ophthalmologist telling a patient that their retina had detached and they needed immediate surgery, before going on to a brief explanation of the importance of posturing after the operation. The patient sounded slightly shell-shocked, but blissfully ignorant of what lay ahead. I listened in horrified sympathy as I continued to follow my ophthalmologist’s instructions: “Look down… look down and right…” etc.

My retinas, thankfully, were as stable as they could be. The more problematic cataract – the posterior sub-capsular one – had perhaps got a little worse, I was told. The Prof came and had a look too, and we had a discussion about my options regarding cataract surgery. I told them about the optometrist who had scared the living daylights out of me at my cataract assessment appointment back in April and they seemed surprised at some of the things she had told me. We agreed that I would continue to plod on for now, rather than being referred back to the Cataract Department. The first ophthalmologist assured me that my cataracts aren’t anywhere near the point of being so dense that it would make surgery more difficult, and the Prof emphasised that it’s my decision as to whether or not to go ahead with surgery at this point, saying that it depends on how much it’s affecting my daily life. “Too much”, I wanted to wail; and yet I have been managing. And “there lies the rub”, as Hamlet would say. Do I plough on with increasingly crappy vision, until cataract surgery becomes absolutely inevitable; or do I bite the bullet and go for it sooner, knowing that there are risks (albeit relatively small ones) that my vision could potentially end up even worse? Of course, ideally cataract surgery would deliver a miraculous improvement… but I’ve been on the wrong side of the stats too often with my eyes to take the risks lightly. And so I stumbled out of the hospital with dilated eyes, not quite knowing whether to feel mildly relieved or massively depressed.

If there are any fellow RD patients reading this who have also faced this dilemma, please share your pearls of experience and wisdom…