Blind skiing

The potential prospect of being blind terrifies me.  The idea of skiing down a mountainside at crazy speeds fills me with fear on behalf of the person doing it.  So when one of my work colleagues asked me some months ago if I’d heard of Millie Knight, a blind skier, my jaw dropped in fascinated horror and amazement.  Of course, since the Winter Paralympics probably just about everyone is aware of Millie Knight, but at that time I knew nothing about her at all.  My colleague had read an article about her in our University Sports magazine (a publication which I’d never come across before, having pretty much no interest whatsoever in sport) which she kindly saved for me.

I learnt that Millie Knight is a nineteen-year-old visually impaired skier who  participated in the Sochi Winter Paralympics in 2014.  She’s lived in Canterbury all her life and was awarded an honorary doctorate of the University in 2017.  She lost the majority of the sight in her right eye when she was just a year old, as a result of an infection.  Five years later, the same thing happened to her left eye and she was left severely visually impaired with only 5% peripheral vision.  She started skiing at that time, first using her mum as her guide and then moving on to work with professional guides.  Her current guide is a chap named Brett Wild, whom she relies on to provide her with instructions via a bluetooth headset, which they both wear in their helmets in order to communicate.  He wears a bright orange jacket which she’s just about able to make out in the snow ahead of her as she has approximately two metres of peripheral vision.  If she loses sight of this bright orange splash of safety, she lets him know via their communication system.  It really is utterly astounding and I have so many questions about exactly how they manage it but for now I think I’ll just stick with being amazed.

However something which is, to me, even more impressive is the fact that in early 2017 she had two very serious crashes which badly affected her confidence, but despite this she managed to build herself up again and get back to skiing.  She’s said that she can’t actually remember having normal sight and that she doesn’t find skiing scary because she can’t see all the hazards ahead, but the crashes forced her to confront the danger of the sport.  The crashes really do sound horrendous.  The first left her with cuts to her chin after she skidded under an inflatable barrier which reinflated on top of her; and the second left her with concussion.  She’s won two silver medals and one bronze in the Winter Paralympics, which is pretty amazing evidence of the fact that she managed to conquer her fear and get back to skiing.  You can read her full story, complete with utterly terrifying video clips of her hurtling down a mountainside at:


Snow? Noooooooo!!

I don’t like the snow.  In fact, that’s an understatement.  I positively detest the stuff.  And before anyone starts accusing me of being a soft southerner, let me tell you that I was born and bred in Derbyshire, in a tiny village in the middle of nowhere.  There was a church and a pub and four farms, and that was it.  There were no buses, and it wasn’t unusual to see more horses than cars going past our house on some days.

One particularly brutal winter when we got snowed in, the snow drifted higher than the tall hedges lining the narrow country lanes and then froze solid.  I can’t remember how long we were stuck before a group of farmers managed to clear an icy tunnel through to the next village, but it was certainly a few days.  Whilst marooned, my sister and I busied ourselves in perfecting the art of sledging down hills on a thick blue plastic sack and attempting to build an igloo in the garden.  We never did figure out how to get the roof on.  Back then, I suppose the snow was kind of fun.  But as young children we didn’t have any responsibilities (unless you count cleaning our bedrooms, walking the dog, and getting the coal in for the fire) and we didn’t have to go anywhere in it.  However, even then I became aware that it wasn’t always fun, after my mum had a nasty skid on some ice whilst trying to turn up a hill.  My sister and I were in the back of the car at the time, and I’m not sure who was more terrified out of the three of us.

Since entering the realms of (allegedly) responsible adulthood, I’ve always hated the snow and, more particularly, the ice.  I don’t like driving or walking in slippery conditions and the fact that I’m a rather chilly mortal probably doesn’t help matters either.  My hands regularly turn an unattractive shade of blueish-purple in the cold, even when I’m wearing thick gloves.  I’m also very mindful of the advice of my second eye surgeon: “Don’t get a head trauma“.  Falling over and banging my head would not be a good idea.  So when ‘the Beast from the East’ was forecast, I found myself scanning the skies each day with a sense of impending doom.

It was on Monday evening that the frequent flurries finally began to settle as they fell onto the frozen ground.  Just before heading to bed, I peered out of the window and was relieved to see that they had stopped.  By morning, more snow had fallen but it didn’t look very deep so it was business as usual.  I stepped gingerly out of my house and walked carefully to the car, somewhat dazzled by the horrific brightness, despite having my giant sunglasses in place.  It was like being trapped inside a huge lightbox and being unable to escape.

“It’ll be fine”, I told myself sternly.  “You can’t put off driving in the snow forever because you’re scared – it was bound to snow sooner or later.”  You see, this was the first lot of substantial snowfall since my eye issues began in 2014, and hence my first time driving in the snow with waffy vision.  Needless to say, it wasn’t the best experience.  I had trouble focussing due to the all-pervading brightness and my road was very slippery.  I drove at the pace of a reluctant snail, sliding slightly as I navigated the corners, and then came to a slow-motion skid as I attempted to stop at the roundabout.  By this time it had started snowing heavily, making it even more difficult to  focus.  “Sod this”, I muttered through chattering teeth as I carefully manoeuvred the car around the roundabout and cautiously retreated back home.  Leaving my boots on the doormat in a small pile of snow, I shakily headed for the kettle, shivering more with nervousness than cold.  A hot cup of tea improves most situations, I find.

Fortunately, I wasn’t the only one who wasn’t prepared to risk life and limb trying to get in, and luckily my boss permitted me to work from home.  Even safely indoors, it felt as if the dratted white stuff was taunting me – it was so bright that I had to draw the curtains until they were almost fully closed. At least it helped to keep the heat in, I guess.  Anyway, it’s all gone now and that horrible glaring brightness has transformed into a soothing grey drizzle.  I’ve never been so pleased to watch the rain fall…

Sunrise in a snowy street

Sunrise in the snow

Eye to Eye 2018: sitting it out

The fourteen-mile sponsored walk in aid of Moorfields Eye Charity will be taking place on 4 March this year (yep – that’s this Sunday!).  I should probably explain that there is also a four-mile option available, and both walks start at Moorfields Eye Hospital and finish at the London Eye.  My sister and I have taken part in this for the past two years.  The first time, we said we’d only do it once, but we had so much fun that we did it again in 2017 as part of a team, the RD Ramblers.  (If you head to my Contents page and look under the heading, ‘Eye to Eye 2017’, you can read more about our efforts last year, including stories from each of the team members.)

Both walks were great fun in different ways.  They were also hugely satisfying if also somewhat knackering.  However, we decided to give it a rest in 2018.  The main reason for this was that we felt we couldn’t keep pestering people to sponsor us.  There are so many worthy causes and these days everyone wants your hard-earned dosh for one or another of them.  Unlike Theresa May and her magic money tree laden down with fruit for the DUP, we’re well aware that most people don’t have such a horticultural delight growing in their back gardens and all that sponsor money is willingly donated by generous supporters.

Of course, we could have taken part this year just to show our support for Moorfields and not worried so much or tried so hard to raise as much dosh as possible.  But frankly, if I’m going to walk fourteen miles in one go, I want to feel as if I’ve accomplished more than the acquisition of blistered feet and aching limbs.  In all honesty though, the day itself, although physically exhausting, isn’t as challenging as the fundraising part of it beforehand.

It’s not just a case of simply setting up a JustGiving page and sitting back while the sponsor money rolls in.  Successful fundraising requires a good JustGiving page, explaining what you’re doing and why, but keeping it succinct.  Then it’s about letting people know what you’re doing, but not in a “Give us all your cash!” kind of way.  It’s about who you tell, and worrying about whether to include work colleagues or whether that’s too cheeky.  Then, of course, it’s about reminding people and hoping that the gentle prods don’t come across as an irritatingly insistent rattle of a charity bucket.  It’s about wondering why that person you thought you could rely on hasn’t sponsored you yet, and whether your friends are rolling their eyes in annoyance as they quickly across past the link to your JustGiving page on Facebook, which you’ve just posted for the twentieth time that month.  It’s about wondering whether the person who told you to keep reminding them to sponsor you really actually meant it or whether they have no intention of sponsoring you.  However, despite all that, it is all worth it when you manage to raise a decent amount for a charity as worthy as Moorfields.

In 2016, my sister and I raised £1,676.00 plus £275.00 in gift aid.  In 2017, our little team of five people and two dogs raised £2,239.03 plus £318.25 in gift aid.  That’s a grand total of £4,508.28.  Not bad, eh?!  As well as that, we’ve also raised over £400 for Moorfields Eye Charity from our  two Twinkles at Twilight events.  So I think we deserve a bit of a rest this year.  Or more to the point, our supporters deserve a rest!  We won’t be chilling out for too long though, as we have another fundraising project in the pipeline which we’re hoping to crack on with.

In the meantime, two of my eye buddies are taking part in Eye to Eye 2018, so if you have any spare pennies down the back of the sofa, it would be fantastic if you could donate them to either Melissa, at:   or Alex, at:  They’ve both really been through the mill with their eye issues and both of them have lost a good deal of sight as a result.  They could be walking fourteen miles through the snow and ice the way things are going!  Eye to Eye with the Beast from the East!  😮  Surely that’s worth a fiver or so..?


But why?

I’ve had various responses from people when the subject of my retinal detachment has first arisen in conversation.  Responses have varied hugely from a bemused, “You mean you actually lost your sight?” to a slightly accusatory, “How did you manage that?!” to a genuinely baffled, “But I thought that was something that only happened to rugby players!”.  Personally, I sometimes wonder if I did something hideously dreadful in a previous life and am now being soundly punished for it.  But in answer to the above questions: yes, when the first detachment happened, I did lose most of the sight in my right eye.  At the moment, I do have sight in that eye, although it’s extremely poor and I’ve lost a lot of peripheral vision.  As to how I managed to detach my retina – I did absolutely nothing at all to cause it.  Doctors have assured me that even the flight to Berlin (see How it all began, if you’re wondering what I’m talking about here) did nothing to either cause it or make it worse.  The rugby player theory is clearly incorrect, as despite my broad, brawny shoulders and prowess on the sports field*, I’ve never played rugby in my life and certainly have no intention of ever doing so now.

So why, then?  Why did my retina detach so suddenly and spectacularly, completely out of the blue?  According to the RNIB, retinal detachment only affects one in 10,000 people each year, so it’s not exactly a common occurrence.  I had received no blow to the head (unless you count the fact that I cracked it open when I was at junior school); I wasn’t born prematurely (in fact I was a fashionable three weeks late**); I’m not diabetic; and although I’d always been short-sighted, this wasn’t bad enough for it to be a concern in terms of increasing my risk of RD.  (Myopia of -6 or more is where this becomes more of a worry.)

The reason for my detachment, according to the detailed notes made by the friendly doctor in the Berlin eye hospital, was a retinal tear as a result of lattice degeneration.  The tear had rapidly progressed to a detachment, as the vitreous fluid seeped through the break and pulled the retina away from its place at the back of the eye.  Lattice degeneration was also noted as the cause of the two tears in my left retina, which were diagnosed at the same time.

So what is this wretched lattice degeneration which has wreaked such havoc upon my life, and why do I have it?  (You see – there’s that wailing, ‘but why’ again!)  Well.  Lattice degeneration is basically a thinning of the edges of the retina, in a lattice pattern.  I imagine it as being a bit like when the heel of a sock starts to wear through, showing the weave of the fabric.  As the retina is thinner in the areas affected by lattice degeneration, holes or tears are more likely to develop which can then progress to a detachment as explained above.

Figures vary as to how common lattice degeneration is, but it appears to affect between 6-10% of the general population.  Of this 6-10%, apparently the risk of retinal detachment is about 1%.  Many people will live in blissful ignorance as lattice degeneration itself is asymptomatic so usually it’s only found as a result of complications such as – ironically – a retinal tear or detachment.  Often, both eyes are affected by lattice degeneration, and the risk of RD also increases in the fellow eye following a detachment in one eye.  Hopefully, this will help my critics to understand that my fear for my good eye is actually based on hard facts and statistics, rather than ‘negativity’ on my part.

So – why do people get lattice degeneration, and why do I have it?  After extensive consultations with Dr Google, it appears that the answer to the first question is that we just don’t know.  There doesn’t seem to be a clear answer as to why I’ve got it either, but I’m absolutely convinced that my eye problems are hereditary and it seems from what I’ve read that Dr Google is inclined to agree.  My Gran had eye problems and I can remember talk of her having a hole in her retina, although she never underwent retinal surgery.  Unfortunately, I’ll never know exactly what the issue was, but I think there’s a strong possibility that lattice degeneration was involved.  I’d give anything to be able to have a good old chat with her about it all, but then on the other hand I’m thankful that she didn’t live to know about my eye issues as she would have been hugely upset.

The suspicion of a hereditary link doesn’t end with my Gran, though.  My cousin experienced a retinal tear when he was in his twenties, and underwent laser surgery to get it fixed.  Fortunately, he hasn’t had any problems since, but again I do wonder whether lattice degeneration was the cause of the tear.  He was simply told that he had ‘weak retinas’, and of course lattice degeneration does weaken the retina in the affected areas.

So… that’s why my retina detached the first time – lattice degeneration.  As to why the darn thing keeps detaching… well that’s PVR.  If you’re interested, you can read more about PVR in my earlier post, The curse of PVR.

*For those readers who don’t know me, I should probably confess that my shoulders are narrow and rather bony, and my only prowess on the sports field was the ability during my school days to always be the last person to be picked on any sports team.  I was rather good at running away from the ball, too.

**The first, and almost certainly the only, time I have ever been fashionable in my entire life.

Attributes of an RD patient

Working in a university means that I’ve heard an awful lot about ‘graduate attributes’ lately.  ‘Graduate attributes’ appears to be the latest buzz phrase in the plot to try and convince students that they’re not wasting their money and graduating with a mountain of debt in vain worthy aim of higher education institutions to not only provide students with a good solid education in their chosen field, but also to make them responsible, respectable and, above all, employable citizens.  Basically, ‘graduate attributes’ appears to be a marketing strategy to boost student recruitment and improve league table results set of qualities and skills which students are encouraged to develop during their time at university.  These vary from one institution to another, but typical examples include the following: confidence, digital literacy, adaptability, integrity, effective communication skills… the list goes on and on.  In fact, I wouldn’t be surprised if tuition fees are actually trebled soon, if students continue to graduate with such impressively long lists of transferrable skills.

But I digress.  Hearing so much about ‘graduate attributes’ got me thinking about what the typical attributes of a seasoned retinal detachment patient might be.  So I set up a working party, a focus group, and a couple of committees and then came up with the following list:

  1. Patience
    Waiting in hospitals for appointments; waiting for our eyes to dilate; posturing for hours and hours with our heads stuffed into pillows, bones digging into mattresses, and muscles aching; waiting for gas bubbles to disperse; waiting and hoping that our retinas have successfully reattached…  It’s clear from all this that it’s pretty much impossible to be an impatient RD patient.
  2. Determination
    Those hours, days, weeks, and sometimes even months of painful posturing which we force ourselves through because we know it’s the one positive thing we can actually do to try and get the sodding retina to stick demonstrates our gritty determination in the face of physical and mental torture.
  3. Resilience
    This one is particularly appropriate for those of us who have had to endure multiple detachments and surgeries.  Our vision changes dramatically from blindness, to light perception, to weird wobbly shapes and crooked edges, to underwater fuzziness.  After each detachment and each surgery we have to accustom ourselves to further visual changes, but we get up again (once we’re given the all-clear to stop posturing) and we just keep ploughing on…  In fact, the lyrics of this song’s chorus seem particularly appropriate:  If you’re an RD patient, join me right now in having a listen and singing along to the chorus REALLY loudly.  🙂
  4. Anxiety
    Okay, now I get this is supposed to be a list of positive attributes, but I like to take a realistic approach.  Clearly the same can’t be said of ‘graduate attributes’ as neither ‘getting drunk on cheap beer in the student union’ nor ‘leaving half-eaten plates of mouldy food around in a shared house’ seems to feature on any of the lists I’ve read so far.  But anyway – unfortunately, anxiety certainly seems to be extremely common in RD patients.  Eyesight is precious.  It’s the sense which people fear losing above all others.  It’s therefore perfectly understandable that we often feel anxious about the very real risk of further sight loss.
  5. A sense of perspective
    As mentioned above, RD is grim and life-changing.  Eye surgery is frightening, and its after-effects of often overwhelming anxiety can be utterly exhausting at times.  However, I have found that this has led to a useful sense of perspective when faced with other unpleasant / dull / tedious / scary things I have to do.  I simply ask myself the question: “Is it as bad as eye surgery?”.  The answer, so far, has always been a resounding, “No”.  So then I just crack on and do whatever it is that I have to do.
  6.  Awareness of true friends
    They say you find out who your true friends are when you’re going through a hard time, and I can confirm this to be absolutely true.  It can be hugely upsetting and disappointing to discover that someone you’ve known for years and believed was an old friend is actually not a true friend; however with number 5 in mind, I’ve learnt that it’s better not to waste time on such people.  Instead, it’s far more helpful to focus on the genuine people in our lives and enjoy spending time with them.
  7. Extended swearing vocabulary
    When your retina detaches again, and again, and again, and AGAIN (okay, you get the picture), a short, sharp explosion of expletives can prove to be extremely satisfying in releasing pent up frustration.  It turns out that there’s a wide variety of adjectives with which to describe a retina which won’t remain attached, apart from ‘sodding’.

So that’s my list of RD patient attributes.  If you can think of anything else which you believe should be on that list, just let me know in the comments below!  Writing this post has made me realise that I’ve learnt some far more valuable lessons from dealing with RD than I did during my three years as a student.  Never mind my 2.1 in Art and English; I just wish I could graduate from my RD experience with 6/6 vision…

Splish splash splosh (or how to get eye drops in)

One day at work recently, I’d just had lunch with my friend and was about to set off to take the minutes at a hideously dull committee meeting in a room with ghastly bright glarey lights so I paused to pop in some lubricating eye drops before heading off to endure the rest of the afternoon.  I was sitting with my head tipped back and the bottle of eye drops poised over my eye when my friend suddenly declared loudly, “Splish splash splosh!”  This caused me to laugh, which made my hand shake and a torrent of drops splashed onto my cheek, somehow managing to completely miss my eye.

Although I can’t always blame my friend, I do frequently manage to miss my eye completely and end up with eye drops running down my face, soaking into my top, or even finding their way into my ear on several occasions.  Now, with lubricating drops it isn’t so much of an issue, but with eye drops which are prescribed medication it’s vital to get the darn things in properly.  It’s also important to remember that if you’re prescribed more than one set of eye drops, you should wait at least five minutes before putting the next one in.  This is to ensure that the first drop isn’t washed away or diluted by the second drop.

One of the most effective methods I’ve found in getting the pesky things in is by following the instructions of one of the nurses at Moorfields, who showed me the knack after my third lot of surgery.  This is what she told me to do:

  1. Wash your hands (obviously!).
  2. Tip your head back.
  3. Hold the bottle of eye drops lengthways between your fingers and thumb, with your thumb underneath the side of the bottle.  Place the nail bed of your thumb in the dip where your nose meets your forehead, so that the nozzle of the bottle is being held over your eye (but not touching it).
  4. With your other hand, gently pull down the skin underneath your eye slightly to make a pocket.
  5. Squeeze the bottle gently until a drop falls into the pocket.  You should feel it, even if you can’t see it coming!
  6. Close your eye for a few minutes and wipe away any excess drops with a clean tissue.  Wipe gently from the side of your eye nearest your nose out to the outer edge, and don’t re-use the same piece of tissue if you need to wipe more than once.
  7. Put the lid back on the bottle and wash your hands.

You can find a link to a short YouTube video from Moorfields about how to put your eye drops in here:

Alternatively, it’s possible to purchase an eye drop dispenser, which is a little gadget designed to help people administer their eye drops more easily.  I’ve never tried using one, but I know that several of my eye buddies use them successfully.  If you search for ‘eye drop dispenser’ on Amazon, you’ll find a variety of different types at various prices.  In fact, there’s so much choice that when I did consider that option a while ago, I felt somewhat overwhelmed and decided to stick with the method of the Moorfields nurse, which usually works for me.  However, if anyone reading this has used a particular eye drop dispenser and found it to be effective, it would be great if you could post a link in the comments below.  Plus, of course, any other handy tips on how to get eye drops in first time would be most gratefully received!


Seeing in the new year with a BANG

No, I’m not referring to the fireworks.  As a retinal detachment patient prone to leaping out of my skin with fear at the slightest flash, fireworks aren’t exactly one of my favourite things.  I was tucked up in bed by about 10:30pm on New Year’s Eve with a hot water bottle, a good book, and a comforting mug of Tick Tock tea.  I was even safely asleep well before midnight and pleased (and somewhat amazed) to report that I didn’t hear a single firework.

So, having enjoyed a rare restful and fairly solid night’s sleep, I leapt out of bed early the next morning to greet the new year and Get Things Done, before the imminent dreaded return to work, which I was desperately trying not to think about.  In this state of mind, it seemed like a cracking idea to clean out the giant cupboard under the stairs and get rid of some of the accumulated junk which is always so easy to ignore whilst conveniently out of sight.  Out with the old, and all that!  The cupboard was swiftly emptied and out came the hoover, car cleaning equipment, a large collection of paintings, art folders, old tins of paint, pieces of wood for making canvases, dog blankets, my mum’s smelly old trainers* which she wears when she comes down to give me gardening lessons**, toolbox, stacks of newspapers… okay, you get the idea.

During the process of emptying this cavernous cupboard, it was necessary for me to get on my hands and knees and crawl underneath a very deep shelf set inside it, in order to reach the boxes right at the back.  It was in manouvering backwards and forwards in this manner that I managed to whack the top of my forehead against the edge of the shelf.  Surprisingly, in view of my fear of getting a head trauma (have a read of Don’t get a head trauma, if you’re wondering what I’m talking about here), I didn’t immediately go into hyper panic.  Rather, I was just intensely annoyed with myself for managing to do something so unutterably stupid.

“You stupid idiot!”, I berated myself as I checked for blood (there was none) and bumps (I wasn’t sure whether there was one or whether it was just a natural lump in my head).  I shut my eyes and opened them again, did my visual field checks, cupped my hands over my open eyes to check for flashes, and wondered whether Moorfields would be open on New Year’s Day.  I reflected on the irony of the fact that only a few hours earlier, I’d been congratulating myself for getting through the whole of 2017 without having to undergo further eye surgery!  I took a few deep breaths, and reminded myself that several of my eye buddies had in the past posted panicked comments on the RD support group site after receiving blows to the head, but they’d been okay.  One had even managed to get a rather nasty looking black eye, but her retina had miraculously remained intact.

“That’s enough!”, I instructed myself sternly after about the fiftieth eye check.  I purposefully ignored the uncharacteristically chaotic bomb site of my living room and went to make a giant mug of comforting tea.  (Pause for an aside to my non-UK readers: tea always makes everything better.  Well, this is what we tell ourselves, anyway.)  After drinking the tea and eating a large quantity of leftover Christmas biscuits (good for shock, you know), I did my visual checks again.  Fortunately, everything seemed to be okay.  Or as okay as it has been for the past few months, anyway.  I very carefully put everything back in the cupboard and made a New Year’s resolution: there will be no more bangs on the head due to my own stupid fault in 2018…

*They’re not really smelly, but I bet she gasps in horror when she reads that bit.
**I usually ignore the lessons and continue with my very own special brand of gardening.  This includes the simple principle: hack it back if it starts looking too messy, regardless of the time of year.