‘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.

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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…

Steaming spectacles and half a dozen doughnuts

In the past few months, I’ve heard a whole load of moans and groans from people about having to wear a face mask. One of the main complaints is that it results in fogged-up glasses, making it ‘impossible’ to see. Now, unless you’ve had laser treatment for a retinal tear and emerged from the hospital, dazed and blinking, into dazzling sunlight with dilated eyes to find your way home alone, then quite frankly you have no right to complain about this. (As an aside, I realise that due to the very specific readership of this blog, it’s entirely likely that an increased number of you will be able to relate to this experience than would be the case in the general population.) I’ll now remove my tongue from my cheek and say that actually, I don’t think ANY of us should be complaining about mask-wearing, when we consider that the vast majority of us don’t have to wear one EVERY day, ALL day, as part of our job. Just think about the doctors, nurses, paramedics, and other hospital staff; pharmacists, supermarket staff, and other workers who have to put up with wearing them throughout an entire working day!

However, mask-wearing for people who are visually impaired can cause additional difficulties. For those of us who wear glasses, it’s not ideal due to the fogging up of our glasses, as this results in a further reduction of useful vision. So for example – I have no useful vision in my right eye, and now slightly waffy vision in my left eye due to a recent PVD and three retinal tears. This means that when the left lens of my glasses starts to fog up, it can make things quite tricky. Particularly when having to adhere to social distancing measures, too. Fortunately, I’ve only experienced one incident of crashing into the clear plastic screen at the Sainsbury’s checkout, but one was quite embarrassing enough.

So after that, I decided to do a spot of research online about how to stop my specs steaming up, and was pleased to discover a number of suggestions. The first one was: ‘wear a mask with a nose wire and be sure to pinch it close to the skin over your nose’. I already did this, and it made not a jot of difference to the steaming up of my specs. The second suggestion was: ‘adjust the elastic around your ears to get a closer fit of the mask around your face’. Again: already done, due to the fact that most masks seem to simply be too wide for my narrow face. And again: my specs still steamed up.

On to suggestion number three: ‘pull the mask up closer to your eyes and put your glasses on over the top of the mask.’ I tried this, but it didn’t seem to make any difference whatsoever. However, it was precisely on one such occasion when I was peering through my fog at the Sainsbury’s checkout that the cashier helpfully told me, ‘You know a good way to stop your glasses steaming up?’ ‘Oh, please tell me!’, I replied, hopefully. ‘You just wash them in soapy water and let them dry naturally’, he said, nodding his head at my quizzically raised eyebrows as he assured me, ‘Honest – it really works!’. So, on my next trip to Sainsbury’s (other supermarkets are available, although they may not be local), I tried it out. Unfortunately, I’d barely made it past the bananas when the inevitable mist descended. Perhaps I should have clarified what type of soap he used.

The next tip I found was to use anti-fog lens wipes, which are available online at various prices. I eyed them suspiciously, wondering if they would damage the protective coating of my lenses, before deciding not to risk it. Instead, on my next trip to purchase essential provisions, I tested another trick which I thought was a bit of a long shot. I folded half a tissue into a thin strip (about 1.5cm wide), placed it inside my mask at the top, just below the nose wire, and put my mask on. I was fully prepared for the tissue to slip down and tickle my nose, causing me to sneeze violently, which is always a scary experience for an RD patient although I suppose may at least have had the welcome effect of scattering everyone near me. But it didn’t slip. I didn’t sneeze. And… it WORKED! I had a fog-free shopping trip! I’m hoping it wasn’t just a one-off, but I shall be testing this method again the next time I venture out for essentials. The only disadvantage, of course, is that I can’t now buy that six-pack of doughnuts and then feign surprise when I get them home claiming, ‘Oh, I thought there were only two!’. But then again… who’s going to know?!

The benefit of hindsight is lacking: tiers, tears, and lockdown #3

It turns out that 2020 isn’t always a good thing. I’d had such high hopes for the year of terrible optometry jokes (the cornea the better). But, apart from two successful rounds of fundraising (Eye to Eye 2020, and Twinkles at Twilight alternative), and an unexpected source of additional optometry related humour in the form of the utter idiocy of Dominic Cummings, 2020 just brought a whole load of horrendous news, personal misery, increasing anxiety, and tears (in both meanings of the word). So I wasn’t sorry to see it finally leave, ‘not with a bang, but a whimper’. Clearly, the idiots setting off fireworks on 31 December hadn’t got the memo that 2020 had been a shit year for the vast majority of people, and they were quite content to terrify the neighbourhood’s dogs, cats, and RD patients with huge explosions and flashes of light on the stroke of midnight.

As we cautiously open the door of 2021 and slowly creep in, never has the image of ‘rats’ feet over broken glass’ felt more appropriate. For, on Monday 4 January, the first working day of the new year, Boris Johnson announced Lockdown #3. ‘Stay at home’, we were told once again, by a man who can’t even use a hairbrush let alone run a country. This was despite having been assured previously that the tier system was working and we wouldn’t need to return to another lockdown. Indeed, we had been told we wouldn’t need Lockdown #2 – there had been no mention of a potential Lockdown #3. ‘All schools will be closed’, he said, despite insisting just the previous day that schools were ‘safe’. (Somebody buy that man a dictionary.)

Of course, anyone with an ounce of intelligence had already predicted that this would happen. One only needed to look at the rising cases in conjunction with the pattern of behaviour from our Prime Minister throughout pretty much the whole of 2020: a) Johnson makes a firm and categorical declaration in relation to a policy (e.g. face masks, free school meals, exam results, the track and trace app, Covid tests, the furlough scheme, working from home, Christmas…); b) Johnson abruptly makes a screeching, late u-turn on the policy, leaving complete chaos in his wake. As well as showing himself to be startlingly myopic in his leadership (I use that word loosely), he has also demonstrated that he is incapable of learning anything from the benefit of hindsight.

So now we come to a matter which I’m somewhat curious about. Throughout 2020, everyone was blaming the absolute hell of 2020 on… errrr… 2020. ‘I can’t wait for this bloody year to be over!’, was a constant refrain as we waded our way through the squelchy mess of the year in leaking wellies and holey socks. But now we’re in 2021, and things are no better. In fact, they’re considerably worse. So who, or what, is going to get the blame now? Will people just throw up their hands and blame ‘2021’? Or ‘bloody Covid’? Or will we lay the blame where it should actually lie for all the horrendous things that have happened over the past year (both Covid and non-Covid related)? Will we call to account our inept government, appalling workplace management, and people who treat others with a lack of respect or humanity? What can we do to ensure that, at the end of 2021, we’re not saying exactly the same things or feeling as if we’ve wasted another year? Answers not on a postcard please (I’m still experiencing Covid-related postal delays), but in the comments below. Any tips on surviving Lockdown #3 would also be gratefully received…

Twinkles at Twilight alternative: the grand draw!

If you donated to our alternative fundraising efforts to raise money for Moorfields Eye Charity and Marie Curie, which I wrote about in my earlier blog post, ‘Twinkles at Twilight alternative‘, you’ll have no doubt been waiting for the Grand Draw of our virtual raffle on Christmas Eve with bated breath! Sadly, due to Covid-19 restrictions and being in a dreaded Tier 4 area, I was unable to get a famous VIP to do the draw and have had to just crack on and do it myself. However, I can assure you that I’ve been immune to bribery and corruption and it has been conducted in an entirely fair manner. All names of people who entered were carefully written down on scraps of paper of equal size and placed in the hat (well, actually in a box, but it’s the same thing really – apart from the downside that a box probably wouldn’t keep your ears very warm). After copious amounts of shaking, shuffling, and stirring around of bits of paper, I went in for the kill (not literally), grabbed one of the tightly folded pieces of paper and drew it out to the sound of an impressive drumroll (in my head, at least). I can therefore reveal that the person to win the specially designed ‘Twinkles at Twilight’ stained glass panel is:

… [just trying to build a bit of tension] …

… [dramatic pause] …

Avril Vora!

Hurrah! Well done, Avril!

Twinkles at Twilight grand draw!

The final total raised for our Twinkles at Twilight alternative is: £720, of which 50% will go to Moorfields Eye Charity, and 50% to Marie Curie (https://sponsorme.co.uk/emmabeasley/twinkles-at-twilight-alternative.aspx). We’ve actually exceeded the amount we’ve previously raised for our usual Twinkles at Twilight event in the past few years by over £200, so I’m really chuffed that we’ve managed to raise so much for two such worthy charities. I’m particularly pleased as I really had no idea how popular this fundraising effort would be – it was a bit of a gamble, to tell you the truth. My main hope was that we would raise more than the cost of the materials and time to make the stained glass, which we did six times over!

Of course, this is all thanks to everyone who so generously donated by buying tickets! I know that it’s been a really difficult year financially as well as in many other ways for a lot of people, so I’m particularly grateful to everyone who’s supported our efforts. Supporters have included people who usually attend our Twinkles at Twilight events, friends, family, and even a few eye buddies and blog-readers whom I’ve never even met! So here’s a really big THANK YOU to all of you. Let’s hope that next year many of us will be able to get together once again and share some tea and cake… 🙂

Finally, can I once again recommend my friend’s stained glass studio, where you can buy some beautiful pieces of original artwork, or attend a workshop to make a piece yourself. As you can see from our Twinkles at Twilight panel, she also undertakes commissions! You can find more information at: https://www.cloverdaleglassstudio.co.uk/. And again, thank you very much to Cloverdale Glass Studio for so generously donating your time in designing and making this piece, and by doing so helping us to raise such a fantastic amount of money for Moorfields Eye Charity and Marie Curie.

Here’s wishing you all a happy and healthy Christmas and year to come. 🙂

Twinkles at Twilight stained glass panel

The amazing magic wand

Upon reading my earlier blog post, ‘Another day; another retinal tear… 😦‘, one of my friends could be forgiven for messaging me the query, ‘I’m confused, is this another one?! I wondered why I had not heard from you. Is there anything I can do? (Other than an eye transplant.)’. I replied with, ‘Yes, another one [sigh]’, before launching into an explanation as to the impossibility of eye transplants due to the minor matter of connecting the optic nerve to the brain. I finished up with, ‘I’ll take a magic wand though? Or an accurate bullet?’. ‘You’re not having a bullet!’, she chided, ‘I’ll look further into a magic wand’. And that was that, and I didn’t think any more of it.

Until a couple of weeks later one Saturday morning, when she rang me for a proper catch-up. About half an hour of non-stop gassing later, and with plenty more to say, there was suddenly a ‘BANG BANG BANG’ on my front door. ‘Oh bother!’, I said (clearly having read too many Famous Five books in my childhood), ‘There’s someone at the door; it’s probably the postman…’ For in these Covid times in Tier 3 (as we were at that point, but by the time you read this we may be in tier 17), who else could it possibly be?! I stomped to the door, opened it, stepped back, and shrieked, ‘It’s YOOOOOUUU!’, as she stood there grinning, with the ‘phone pressed to her ear. I think the lack of human contact this year has meant that I greet everyone I get to actually speak to face-to-face in the style of an over-excited labrador who hasn’t had a walk for a week. (I draw the line at leaping up and licking peoples’ faces though.) ‘Don’t worry’, she said, ‘I’m not going to come in. I’ve just brought you a delivery.’ Thereupon followed that dance we’re all now fully accustomed to, whereby you step back, wait for the other person to deposit the item on the ground and step away; then step forward to retrieve it.

I tore open to envelope to discover… A MAGIC WAND! There was also a note of authenticity. Who needs Father Christmas when your friend knows a magic wand maker, eh?! I practically squealed with excitement and asked her what the spell was for fixing broken retinas. ‘Eye Rectify’, she told me seriously, as I waved the wand around in excitement. After more questions about specifically how I should hold the wand, how many times I should wave it around, and exactly what I should say in order to guarantee success, she sagely advised me, ‘Well I think it’ll take some practise’, before asking me, ‘Have you not watched Harry Potter?’. (Hmm, I thought she knew me better than that…)

So practise I did. I haven’t yet noticed any improvement in my vision, although to be fair, no further deterioration is is a result in itself which I’ll happily take. The magic wand is now sitting in my living room and every now and then I pick it up and have another go. I’ve also been practising non-eye-related spells. ‘Brexit begone!’, I boom as I swoosh the magic wand through the air. ‘Bugger off Covid!’, I cry with feeling, stabbing dangerously close to the overhead light bulb. ‘Good health for everyone!’, I declare hopefully, before muttering under my breath, ‘except horrible people’.

So, eye buddies, family, friends, and fellow bloggers… what would you wish for if you had an amazing magic wand? Tell me in the comments below, along with the relevant spell to use, and I’ll give the wand a swoosh for you. I think we can probably all agree after this year that good health all round would be an excellent start. So here’s wishing you all a healthy Christmas and year to come… swooooosh! 🙂

Time travel

I recently accidentally found myself reading a novel about time travel. I say ‘accidentally’, because sci-fi type stuff isn’t usually my kind of genre, but I chose this book simply because it was 99p on Kindle and written by an author I like. It tells the (possibly somewhat tall) tale of a young woman who discovers that she’s pregnant just after learning of the death of her husband in the Vietnam war. Her brother-in-law pulls some strings to get the unborn baby checked out via the brand new method of ultrasound scans, whereupon the shocking diagnosis is made that the baby has a heart defect and won’t survive outside the womb.

At this point, her brother-in-law quietly reveals to her (as you do) that he’s actually a time traveller and can help to save her baby by transporting her forward to the year 2001, at which point surgery in the womb was being developed. Of course, being of sound mind and practising logical decision-making, I snorted loudly at this and wondered whether my 99p might have been better spent elsewhere. But I persevered and after only a few more pages, I was utterly gripped by the story. I won’t reveal any more spoilers, but I can heartily recommend it as excellent escapism from all Covid, work, and ophthalmic related stress.

Aaaanyway… after finishing the book and feeling slightly disappointed that I’d read it so quickly, I started wondering whether I could time-travel to the year in which there will be a cure for PVR and multiple retinal detachments and tears. ‘Hmmm, I wonder when that might be?’, I mused to myself as I debated from which point I might step off from 2020 and whether or not it would need to be over water (read the novel – you’ll understand). Presumably I’d also need to join the back of an extremely long queue to step off from 2020, so would have to bear in mind the waiting time when planning my arrival in the future. In considering this complicated mathematical equation, I cast my mind back on a brief chronological history of important advances in the treatment of retinal detachments…

• 1853 – Retinal tears were first spotted, at around the same time that the ophthalmoscope (the instrument which allows the doctor to look inside the eye) came into common use.
• 1920 – Jules Gonin reported his first successful treatment of retinal detachment by sealing the retinal break, using a method he had developed following extensive research to demonstrate that it was the retinal tears which caused the detachment.
• 1933 – Cryotherapy was first introduced.
• 1949 – First scleral buckling procedure was carried out.
• 1963 – Laser was first used to seal tears in the human retina.
• 1970 – First plans plana vitrectomy was performed. Retinectomies were first carried out around this time as well.
• 1978 – The use of silicone oil as a tamponade following vitrectomy was used for the first time.

So there haven’t been any major breakthroughs in the treatment of retinal detachments and PVR for a fair while now. Almost my entire lifetime, in fact, which makes me feel somewhat old. I’ve asked my consultant, who specialises in PVR, if there’s any research on the horizon which might offer hope to PVR patients, and the answer has always been disappointing. I’d like to think that it’s about time for another Jules Gonin style breakthrough, in which case I don’t need to time-travel too far into the future to find my cure. 2035, perhaps? Would that do it? With any luck, an effective Covid-19 vaccine will have been rolled out by then too, although if the Test, Track, and Trace system is anything to go by, I fear we could be waiting a couple more years at least. Or maybe I should play it safe, and travel a bit further forward… say 2050? At least Boris Johnson will be long gone by then… let’s hope the Tories won’t still be in power!

Or, in hindsight, perhaps it would be better to travel back to that day in April 2014 and instead of getting on the ‘plane to Berlin, I’ll just catch the train the Moorfields instead. Hmmm… decisions, decisions…

Note: For anyone who wants to read the novel I mentioned at the start of this post, it’s entitled ‘The Dream Daughter’ and is by Diane Chamberlain.

On my sixth trip to Moorfields (since August), the surgeon said to me…

[To be sung to the tune of ‘The Twelve Days of Christmas’. Never let it be said that I don’t make an effort for the festive season…]

On my sixth trip to Moorfields, the surgeon said to me… after:
One retinal bleed;
Three retinal tears:
Four months of insomnia;
Six surgical face masks;
Eight different doctors;
Ten slit-lamp examinations;
Eleven lots of dilation drops;
Twelve train journeys to London;
Fourteen pricey cab rides;
Over one thousand shots of laser;
… There are no more retinal tears (at the moment)!

Yes, that was the verdict at my Moorfields appointment on Thursday, for laser number 3 to be checked. Okay, yes, I admit it – the ophthalmologist didn’t actually sing me my own personal ophthalmic version of ‘The Twelve Days of Christmas’, although it may have reduced my stress levels somewhat if he had. I’m trying to focus on the first part of that verdict, rather than the portion in brackets, particularly after the advice of one doctor following my admission that I’m currently a paranoid wreck, to ‘try and take things one day at a time’.

I was very pleased that the ophthalmologist who conducted this check up was the one who had carried out laser number 2. He was possibly less pleased to see me again, after being subjected to my torrent of questions a few weeks ago, but he didn’t let on if this was the case. Instead, he said kindly, ‘I really hope I’m not going to find another tear.’ ‘So do I!’, I replied with feeling as I squeezed my eyes shut, adding, ‘I’ll be needing a shotgun if you do.’ I think he thought I was joking. In any case, luckily this didn’t put him off as I popped my chin on the chin rest, opened my left eye wide, and prepared for what always seems like an agonisingly long wait for information as the slit lamp examination is conducted. To my delight, he talked me through his findings as he went: ‘Look right… look down and right… ah, there’s so-and-so’s laser, that looks good… look down… yes, all okay, there’s my laser – that’s all okay… look up… yes, there’s the cryo scar’, etc. etc. His narrative had the welcome effect of silencing my internal voice somewhat, which is normally screaming throughout the examination: ‘Please let it be okay; please let it be okay; please let it be okay!’, followed by ‘Oh God, what’s he seeeeeeeeeeeen?!’, at the slightest pause or request to, ‘just look to the right again’.

Once he’d finished, he proceeded to show me a diagram of my good eye with the location of each tear marked on it, on the computer screen. I found this both fascinating and depressing in equal measure. As previously, he answered my many questions patiently. He explained again that there’s actually no such thing as a ‘complete PVD’, as the vitreous always remains attached to the front of the eye, but just comes away from the back and then more gradually from the sides. Again, there was no definitive explanation for the occasional flashes or ‘lava lamp effect’ I see, but he said it was likely to be due to the retina having lifted in various places, or where bits of vitreous are still attached. I think I might just have to accept that I may never know the precise reason for some of the weird visual effects I see. What was very clear, however, was the instruction to go straight back to A&E if anything changes beyond my current baseline. Of course, I’m well aware of the drill now: new floaters, an increase or change in flashes, the dreaded ‘curtain’… all these horrors require immediate attention in A&E.

As I thanked the doctors and stumbled out to the receptionist to hand in my paperwork, I said to her, ‘Don’t take this the wrong way, but I really hope I won’t be seeing you for a while!’. She laughed and waved as I trudged out of the clinic to begin the tricky journey home with dilated eyes. Of course, the second day of Christmas has already passed, but I’d really, really, really, REALLY love the gift of two new retinas, if anyone wants to know what I’d like for Christmas…

Twinkles at Twilight alternative

For the last few years, at this time of year my sister and I have held an event called ‘Twinkles at Twilight’, at her workplace. This is basically an evening of tea, cakes, and appropriately-themed games to raise money for Moorfields Eye Charity and Marie Curie. Of course, due to Covid-19, we’ve been aware for quite some time that our event sadly wouldn’t be possible this year. Here in England, we’re currently not even allowed to mix with one other household, let alone hold a tea party with a load of octogenarians and nonagenarians in a stuffy room with all the windows tightly shut because they tend to feel the cold.

So I had a long hard think about what we might be able to do instead. I debated organising some kind of ‘bung me a bob and I’ll bake you a cake’ scheme, in which people could present their tupperware to be filled with cake, in exchange for a donation to our charities. But in the build-up to Lockdown 2 and my observations of the loo roll aisle in my local Sainsbury’s rapidly emptying once more, I was concerned that people might think I was panic-buying if I started stocking up on cake ingredients. I didn’t really fancy asking my neighbours to donate their egg rations, as my Gran had done during the war when she baked her own wedding cake.

I then remembered that one of my friends, a stained glass artist, had recently raffled a piece of her work for charity. I asked her if she’d be interested in making an eye/star related piece of glasswork so that I could basically pinch her idea. She agreed with enthusiasm, delighted at the prospect of working on a commission piece for a good cause. In debating possible designs, I explained to her what Twinkles at Twilight is all about.

My sister christened the event ‘Twinkles at Twilight’ as our fundraising on this occasion is for both Moorfields Eye Charity and Marie Curie.  For anyone who doesn’t quite follow her logic, the ‘twinkles’ relates to a twinkle in the eye and ‘twilight’ refers to the time at which Marie Curie nurses begin their shifts to provide night-time palliative care for patients in their own homes.  The reason she wanted to support these two charities is probably best explained in her own words:

“Palliative care nurses enable terminally ill patients to spend their last days at home with their family.  Caring for a very ill relative is emotionally and physically draining, involving being up numerous times in the night. Marie Curie nurses give relatives a night of cover so that relatives can get an undisturbed night. This enables the carer to recharge their mind and body as much as possible in the circumstances.  Current funding levels only allow a limited number of nights’ cover.  They were my twilight angels when my Grandad was ill.

I grew up aware of how my Gran’s sight trouble increasingly limited her activities as it got worse.  Then in 2014, my sister had a retinal detachment.  This is when the reality of potentially facing sight-loss really sank in.  She has now had five surgeries to reattach it as she is in the minority (10%) of people who suffer recurrent re-detachments.  Each time her retina detaches, she loses more sight.  The fear of losing her sight is very real.  Moorfields are affiliated with University College London Institute of Ophthalmology and carry out sight-saving research.  They also raise awareness of eye health to help prevent problems.  Close your eyes for 60 seconds and imagine you can never open them again.  That’s why I support Moorfields.”

With this in mind, my friend designed a piece of stained glass. The round shape filled with clear, textured glass represents the pupil of the eye, and the star represents a twinkle in the eye as well as twilight, when the stars start to appear. We decided to use blue glass for the star as this also represents the sky at twilight. I mentioned to her that I like the parallel of the fact that it’s the pupil which lets light into the eye, just as it’s the light passing through the piece which brings the stained glass to life.

My friend has very generously donated her time in designing and making this original piece of artwork, and I’ve paid for the materials. If she was selling it via her glass studio, she would be charging £108.00. It’s a flat panel, measuring 24cm in diameter. So, if you fancy a chance to win this beautiful stained glass panel and would like to support two worthy causes in the process, please make your donation at: https://www.sponsorme.co.uk/emmabeasley/twinkles-at-twilight-alternative.aspx.

We’re charging £5 per go, and the winner will be drawn via the simple method of names in a hat. So, for example, if you donate £20, this will give you four chances to win. You can have as many chances as you like – obviously the more the better! The draw will be made on Christmas Eve, and I’ll announce the winner on my blog and on the fundraising page above. The glass panel has been specifically designed so that it can be posted to the winner if necessary (securely packaged, obviously!). Due to postage costs, I’m afraid the raffle is only open to UK residents.

Charities have suffered greatly as a result of Covid-19 and have lost a lot of their normal revenue gained via fundraising this year, so I’m hoping that lots of people will help us to support Moorfields Eye Charity and Marie Curie by buying a virtual ticket or two, at: https://www.sponsorme.co.uk/emmabeasley/twinkles-at-twilight-alternative.aspx.

Finally, if anyone needs any Christmas present ideas, I heartily recommend checking out Cloverdale Glass Studio, at: http://www.cloverdaleglassstudio.co.uk/.

Twinkles at Twilight stained glass panel

Another day; another retinal tear… :-(

Last Thursday, I set off on my lockdown trip out to Barnard Castle Moorfields Eye Hospital in glorious autumn sunshine, for my appointment to get laser treatment number 2 checked (have a read of, ‘From the optometrists… back to Moorfields A&E [sigh]‘ if you’re wondering what I’m talking about here). Despite it being my fifth visit to Moorfields in four months, and my realisation that I’ve spent more time there than in ANY of my friends’ or relatives houses this year (apart from my mum’s); I was feeling fairly hopeful. Hopeful that all would be well and that it would be my last trek into London for a while.

As I sat in the taxi from Waterloo to the hospital, I tried not to glower at the chatty taxi driver as he told me all about how laser eye surgery had meant that he had perfect vision without having to wear glasses. I bit back my comment that I’d settle for perfect vision in ONE eye WITH glasses. However, he possibly regretted his chattiness upon mentioning that he hadn’t had an eye test for quite a while, as I glared sternly at him in the rear-view mirror and chided him that he really should go and have one, assuring him that optometrists are remaining open through lockdown 2 and he just needed to ring and make an appointment. Despite bemoaning the lack of customers during the pandemic, he was probably quite relieved to set me down at my destination, and I moved forwards to join the queue.

I was early, so had to wait outside for a while due to restrictions on allowing limited numbers of patients into the hospital at once, but finally made it in and up to the VRE clinic. After another wait, I was called in by a very friendly nurse, who asked me where my sister was. ‘Oh!’, I said, ‘Have I seen you before?’. ‘Yes!’, she answered, mentioning my usual clinic and explaining that staff had been moved around due to Covid. I nodded as I told her that Covid was the reason my sister wasn’t able to come with me. After a bit more Covid talk, we moved onto visual acuities, pressures, and insertion of dilation drops. Then I was sent back into the waiting area with the cheery instruction, ‘Say hello to your sister for me!’.

I didn’t have too long to wait before I was called in by the doctor, and the slit lamp examination began. ‘Look up… look down…. look down and left… look left… look up and left… look right…’ At this point there was a very long pause. ‘Oh God, what’s he seen?!’, screamed my internal voice. ‘Ask him if everything’s okay… ask him; ask him!’, it demanded. But, as always, I remained in position, not wanting to disturb the doctor as my heart thumped in fear and I superstitiously crossed my fingers under the slit lamp table.

After what seemed like an age, he told me to sit back, and delivered the news that I had a new small operculated tear in my good eye. I screwed up my eyes and muffled a long wail of despair from behind my mask. I swear if he’d had a pistol handy I’d have asked him to just put me out of my misery there and then. He explained that the tear would need to be lasered, and proceeded to patiently answer my desperate questions as to why this was happening (‘PVD’), whether there was anything I could do to prevent further tears (‘avoid car accidents resulting in whiplash, and don’t jump up and down‘), and whether my left eye would end up in the same sorry state as my right (‘currently, we’re a long, long way off that scenario‘).

I eventually shuffled out into the waiting area again and tried to scribble down what he’d said in my little eye book through dilated eyes. It was a very long wait for the laser and I started to feel slightly shaky due to lack of food (and probably shock), so surreptitiously scoffed an emergency cereal bar beneath my mask. Shaking whilst undergoing laser treatment would not be a good combination…

I was eventually called into the laser room, whereupon he inserted numbing drops (he’d already added extra dilation drops) and then swooshed a load of lubricating gel into my eye and inserted a contact lens. Apparently there’s more than one method of administering laser, but I wasn’t expecting this and felt somewhat alarmed by it. I didn’t like the contact lens method. Not that I was particularly fond of the other method either, it has to be said. My eye felt uncomfortable and ‘stuck’, and I could feel the soggy gel oozing messily out of my eye. With my chin on the chin rest and my eye staring fixedly in the required position, I told myself to just endure it, as the laser beeped and flashed that bright golden yellow light into my retina once again: ‘zap-zap-zap-zap-zap-zap-zap-zap-zap-zap’, and again, ‘zap-zap-zap-zap-zap-zap-zap-zap-zap-zap-zap-zap-zap’ etc etc, until eventually it was over. He removed the contact lens and I was permitted to wipe my gooey eye, before I once again observed in a panic, ‘I can’t see anything out of that eye!’. Once again, I was assured, ‘Don’t worry – it’ll come back’. It did… as the pinky/lilac mist descended, then slowly cleared. After a few more questions, which he answered with the aid of a huge diagram of an eye on the whiteboard, I was sent on my way to navigate the difficult journey home with dilated eyes.

The following day, one of my eye buddies messaged to ask me how I’d got on. After explaining what had happened, I told her, ‘I don’t know whether to scream or cry’. ‘I’d do both’, she advised, ‘only maybe warn your mum first’. Another friend messaged to ask me how I was feeling after my latest bout of eye-related trauma. I replied: ‘Numb, but really sad as if someone’s died. Angry, but resigned. Stressed and anxious. Terrified of losing vision in my good eye. Pissed off. That kind of covers it.’