Tag Archives: visual impairment

“Always look on the bright side of life”…

… but not too bright, for those of us with eye issues!  Musical accompaniment to this blog post can be found at: https://www.youtube.com/watch?v=PUHTzEv9V-s and is, of course, provided by the motley Monty Python crew.  Naturally, being British (although in the current political climate I hesitate to admit that), I’m no stranger to the concept of using humour – often of the black variety – to cope with difficult circumstances.  It was often the best method of defusing situations with my Gran, when she was suffering from Alzheimer’s Disease.  Of course, occasionally this approach can backfire, as I discovered the time I informed her, with a perfectly straight face, that Winston Churchill was the prime minister and she believed me.  Fortunately, she quickly overcame her confusion and readily forgave me when my mum explained, with a glare in my direction, “No he’s not – don’t worry, it’s just Emma being silly again.”  (The addition of ‘again’ implies that I’m often silly, which obviously I vigorously refute.)

Anyway… looking on the bright side in the manner of Monty Python has helped me in my ongoing RD journey, and I know it’s helped many of my eye buddies too.  So I thought it might be fun to share some of my favourite examples of the importance of humour in getting through the horrendous RD journey…

Plan B
After my third lot of surgery, in January 2015, one of my friends posted a cartoon-type picture of herself offering me a tray with a couple of eyes rolling around on it, with the caption: “Even with every confidence in Emma’s recent surgery, Debbie put forward a fantastic plan B.”  Luckily, even in my groggy post-op posturing state, this did make me chuckle.  However, I must point out that I’ve had two more surgeries since then and my friend still hasn’t come up with the promised goods.  (Tut!)
A cartoon-type picture of my friend offering me a tray with a couple of eyes rolling around on it, with the caption: "Even with every confidence in Emma's recent surgery, Debbie put forward a fantastic plan B.".

Eye-related gifts
One of my eye buddies once caused great hilarity in the Facebook support group I belong to by posting a picture of a Christmas present he’d just received from his mum: a framed copy of a Snellen chart (the eye chart used to test visual acuity).  It’s just as well no-one’s ever done that for me, or I’d have it hung in a well-lit area with a chair placed precisely six metres away to enable me to test myself daily!
Speaking of this particular eye buddy, you can find another example of his humour in my post, Pre-appointment paranoia.

PVR ?  Nooooooooooo!
When sharing humorous eye-related incidents on the Facebook  RD support group, one of my eye buddies related a story which made me gasp in horror before giggling slightly hysterically.  It’s best told in his own words:  “The funniest thing that happened to me, as you may remember, following my RD surgery was when I visited my optician in a worried way at one point following a sudden onset of a shower of new floaters in the RD eye – it occurred about three months after my op. “OK, could you read these three letters on the eye chart please?” he says…..I look up at the eye chart with my good eye covered and immediately read the letters “P V R”. I quickly look away with a kind of groan and say “No….I don’t even want to THINK about that!”. He laughs, slightly embarrassed, and says “Well at least I can see that you’re managing to see the letters all right”. (He knows I’m reasonably knowledgeable about eye problems). Exam turns out to be totally clear with no problems found.”

Eye jokes
Then, of course, there are the eye jokes…
Q: “What’s the scariest thing to read in braille?”
A: “Do not touch.”

“Whilst cooking today, I accidentally rubbed some herbs in my eyes.  I’m now parsley-sighted.”  [G r o a n !]

Or this one – a picture of a patient sitting in front of a Snellen chart and holding binoculars up to his eyes, as the white-coated doctor barks, “No cheating!”.  (Don’t we all just wish we had a pair of binoculars at times, when squinting and scrunching our eyes up to try and decipher the letters on that chart?!)
A patient sitting in front of a Snellen chart and holding binoculars up to his eyes, as the white-coated doctor barks, "No cheating!".

Blind driving
The only thing which has ever made me actually laugh out loud when specifically discussing eye issues and driving is this little gem, posted by one of my eye buddies: http://imgur.com/gallery/fIVfPwG.  It’s a short video clip which could accurately be captioned, ‘driving with a long cane’.

Puns
Then there are the little puns which come up in day-to-day life… for example:
A couple of years ago, over a Boxing Day game of Scrabble, my sister surveyed her tiles and casually remarked, “I don’t want to make you jealous, but I have three ‘i’s!”
And:
During a recent chat with an eye buddy, I observed that he seemed to be a bit hyperactive.  “It’s called humour”, he shot back, “I used to have some in my eye!”.

‘Blind’ man predicaments
Finally, another one which made me gasp is a spoof video of a ‘blind’ man getting into all sorts of predicaments whilst walking with his long cane, available at:  https://www.instagram.com/p/BevMNizHvCm/. This one was sent to me by the VIP* I met up with a couple of weeks ago.  (*Very Important Person, that’s right!)  It’s not so much the man himself, but the reactions to him by passers-by which are so entertaining to watch!

If you have any eye-related jokes or humorous incidents, please do give us all more to laugh about by sharing them in the comments below… 🙂

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Near-miss head trauma

I blame my next-door neighbour.  His house has been abandoned for approximately the past two years, which is great in terms of noise levels (i.e. there is none), but not so good in that the fences need repairing, the garden’s an overgrown haven for rats (which have – much to my horror – on several occasions made their way into the cavity walls and up into the loft), and the trees are steadily advancing into my garden like Birnam Woods coming to Dunsinane.  My absent neighbour keeps saying he’s going to come and sort it all out, but quite frankly he’s told me this so frequently that I don’t believe him any more.  And so it came to pass that I decided to take matters into my own hands…

One tree branch was stretching right across the middle of my garden, blocking the sunlight to my carefully sown good eye food in my raised veggie bed.  I’d been eyeing it up for a while, and knowing that I was legally within my rights to chop back any branches overhanging my side, I decided to take the bull by the horns (or more accurately: the branch by the saw).  So I clambered up onto a sturdy up-turned plant pot to reach the branch, which was about half an arm’s length above my head.  I then peeked up without tipping my head back to far and making the scary black floaters appear, positioned my trusty garden saw on the branch, then lowered my head and steadily began to saw, whilst holding onto the fence with my other hand, for balance.  I sawed, and sawed, and occasionally glanced up to peer at my progress.  Then I put my head back down and sawed some more, until eventually the saw started getting stuck.  I then had the genius (?) idea of sawing from the other side of the branch, so that the two cuts would meet up in the middle.  So once again, I looked up, positioned the saw, looked down again, and sawed for dear life.

This went on for hours*, by which point my arm was aching and I was getting hot and somewhat frustrated.  I waggled the branch, but it moved not one inch.  After sawing manically for a few more minutes, I gave up.  “Pah!”, I told the branch in irritation, “Sod you then!”.  As I stomped down off the plant pot and dropped the saw, there was an almighty crash which sounded like Zeus having a paddy on Mount Olympus.  I instinctively shot up my hand and fortunately managed to catch the end of the branch as it crashed down, and lowered it gently to the ground.  It covered the entire bottom end of my garden, and crushed my little beetroot seedlings in my raised veggie bed.  I stood back and surveyed the damage, wondering how the branch had managed to appear so much smaller when it was attached to the tree.  I then felt slightly queasy at the thought of what might have happened if I hadn’t lost patience and stepped down from the plant pot when I did.  It probably hadn’t been a very sensible thing to attempt on my own, particularly in view of the advice of one of my surgeons: “Don’t get a head trauma”I’m sure he would not be amused if he knew that I’d almost managed to get a heavy branch to crash on top of me.

As penance for my folly, I was then forced to chop up the branch into pieces small enough to carry through the house (I live in a terrace, with no rear access) and place in the garden waste bin.  This process took approximately an hour, filled the bin to overflowing, and left a trail of bits of branches and leaves through my house.  So then I had to clear that up, too.

Annoyingly, my herculean efforts have only created a small chink of extra light through the mass of foliage sprouting from my neighbour’s garden.  So… if any of my readers happens to be a tree surgeon and would be willing to help me out, please give me a shout.  Or, if you know of any tidy squatters who are handy in the garden and don’t make too much noise, please let me know as there’s a property they may be interested in…

* It felt like hours, but it was actually only minutes.

Branch on grass in front of shed, with a pile of smaller branches by the side.

Dismantling the branch of destruction.

Blind fear

Since my eye issues began back in April 2014, my greatest fear has been that I may one day go blind.  I’m sure that some people will dismiss this as hysterical melodrama; however, the hard facts are as follows:

  1. I’ve lost a considerable amount of vision in my right eye, which cannot now be restored.
  2. After suffering a retinal detachment in one eye, the risk of it happening in the other eye increases by approximately 12%.
  3. I have lattice degeneration in my left retina and have already had two large tears repaired.
  4. I have a cataract in my left eye.

So basically, I have good reasons for my fear and, being a realist, I’m all too aware that it would be foolish to gaze into my future through rose-tinted glasses.  This fear of blindness, coupled with the fact that I’m a bit of a worrier [understatement alert!] isn’t the best recipe for a relaxed and peaceful life.  It’s sometimes easy to get drawn into things like compiling a mental list of all the things I wouldn’t be able to do if my left eye were to end up as bad as my right.   (I won’t even get into that one right now…)   I’ve had nightmares about going blind – proper, terrifying dreams which seem so real that when I finally jolt awake I have to switch my bedside light on and check that I can still see as my heart rate gradually returns to normal.  “What could I do to lessen this fear of blindness?”, I’ve often wailed to myself.

I decided that it might help if I could actually meet someone who’s severely visually impaired and just chat to them about how they deal with certain things.  Perhaps facing the fear in this way would dilute it somewhat, I mused.  However, in order to do this, I first needed to find someone who would be happy to talk to me, and secondly I had to face my lesser worry of meeting a Scary New Person.  (Yikes!)

An opportunity presented itself out of the blue last week when I spotted a post on a VI group on Facebook.  It was someone asking if any members were in the Canterbury area as she’d like to get to know other people who were dealing with sight loss.  I bit the bullet and sent her a message, thinking it would probably disappear into that weird ‘other inbox’ Facebook has, and I’d never hear from her.  A reply pinged back within minutes, and after messaging back and forth for a while, we arranged to meet up for a cuppa in Canterbury that Sunday.  Fortunately, that didn’t give me much time to stress about it, but all the same I worried about potentially saying the wrong thing or coming across as being nosy.  (Is genuine curiosity and the desire to educate myself the same as nosiness?)  At least there was one thing I didn’t need to worry about: she’d told me that she’d be in dark glasses with a long cane, so  I told myself that at least I should be able to spot her easily!  This didn’t stop me from honing in anxiously on every person walking with a stick (why, oh why, do they make those metal walking sticks so bright?  Whatever happened to the good old-fashioned wooden ones which don’t stand out?!)  But I digress…

We met up and immediately I felt more at ease during our debate about which coffee shop to go to, as she observed despairingly, “They’re all really dark, aren’t they?!”  I was chuckling about the irony of this, because I have problems in places which are too bright.  However, it transpired that so does she!  Once we were safely seated in appropriately-lit area and sipping our drinks, we got down to the serious business of exchanging eye stories…

I learnt that she’s registered severely sight impaired and has had sight problems since birth.  When I asked what her eye condition is, she burst out laughing, before explaining that it’s so complicated that she often doesn’t know where to start!  The main issue seems to be that she has bilateral corectopia, which basically means that both her pupils are in the wrong place.  When she removed her dark glasses to show me, and I peered into her eyes, I actually gasped in surprise.  Her pupils are tiny, situated high up in her irises instead of in the centre, and their shape is slightly distorted.  She explained that they don’t dilate properly (the same as my right pupil since my last surgery), which explains why certain lighting conditions are so tricky.  She told me that because of the position of her pupils, she has tunnel vision – i.e. she doesn’t have any peripheral vision.  I realised just how bad this must be when I asked what her visual acuity is in each eye and discovered that they’re better than mine in my bad eye.  So basically, as she’s registered severely sight impaired, this means that her peripheral vision must be MASSIVELY reduced.

She also explained that her natural lenses are displaced.   She keeps getting flashes of light as a result and she’s been warned that she has a high risk of retinal detachment.  One of the reasons she was keen to meet up was to learn more about RD, which hopefully I was able to help her out with.  It quickly became very apparent that just as I’m terrified of losing any more sight; so is she.  I won’t ramble on any further here as this post is already rather long, but I learnt a great deal from our meet-up.  It was also a lot of fun – it’s always therapeutic to chat to someone who has a good sense of humour and understands certain perils of eye issues!

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: http://www.bbc.co.uk/news/resources/idt-sh/skiing_blind_crashing_at_70mph.

And the prize goes to…

It’s prizes season again.  You might be forgiven for thinking that this is a good thing.  After all, prizes are generally considered to be positive things, to be greeted with squeals of excitement and delight whilst perhaps clapping hands together or indulging in a little skip.  Rather like surprises, in fact.  I wonder if that’s why the word ‘surprise’ includes ‘prize’ in it?  Well… sort of, anyway.  But enough of this etymological digression – interesting though it is – and back to the matter in hand.

In this case, the fact that it’s prizes season again fills my heart more with dread than joy.  I should probably explain at this point that it’s student prizes that I’m talking about here.  Part of my job involves the annual calculation of exam results to figure out which students are the lucky winners of certain prizes.  Apparently, the fact that they’re studying at what the TEF considers to be a ‘golden’ university [pauses to stifle a snort] isn’t enough, and we need to award them prizes as well.  Although to be fair, the prizes have been awarded for long before the TEF was even thought about.  Anyway… this particular job involves me spending hours running lists of data, linking it up with other lists of data, and then staring at row after row and column after column of Excel spreadsheets in order to work out in an extremely long-drawn-out and sometimes quite literally painful fashion, which students should be awarded which prizes.

I don’t know whether any of my eye buddies find the same, but for me Excel is visually pretty horrible to work with for extended periods of time.  All those lines and columns are an effort to focus on, and spending long periods of time scrolling back and forth through rows and columns of data make my eyes ache.  I’m getting through about three times the amount of eye drops I usually use in a day at the office, and my eyes still ache more than usual by the time I get home in the evening.  If it wasn’t so intense over such a short period of time, it probably wouldn’t be as bad.  But because this work has to be completed relatively quickly due to various deadlines, I pretty much have to just crack on with it.  As a result, I find that Excel in large doses is even worse than Dreamweaver, a program which I find quite appalling in terms of accessibility.  Even before my eye issues, I found the size of the font on the menus and files within Dreamweaver difficult to read.  These days, it’s horrendous, and I simply can’t use it for long periods of time.  Of course, there’s always the magnifier, but that’s not particularly user-friendly either, especially when trying to move between files fairly quickly in order to get stuff done.  Maybe I should start thinking about those ideas for a new job again, which I explored in New vision, new job…?

Of course, what makes prizes season worse is the fact that back in June 2014, just two weeks after I’d returned to work after my long period of sick leave following my first retinal detachment, I was starting to work on prizes again when my retina detached for the second time, leading to a mad dash back to the hospital.  So now, prizes are associated in my head with a particularly grim period of my life.  Unfortunately, being aware of this and understanding that it is merely an association does nothing to block out all the unpleasant memories.

However, I managed to plough through the dreaded task of poxy prizes last year and will hopefully manage to do so again this year, amidst much swearing, gnashing of teeth, and pausing to administer eye drops.  The final year prizes are almost done now, so it’s just first years to go once the results are published.  And as to who the prize is going to… well, quite frankly, I think it should go to me once all of this is done and dusted.  I might just award myself a £50 book voucher.  Or perhaps bake a celebratory cake instead…

Note to self: Must remember to stock up on eye drops in prizes season.  And lottery tickets.  Lots of lottery tickets.

Second note to self: Even prizes are better than more eye surgery.

Reduced vision; increased insight

An entirely rational fear of going blind probably isn’t something which most people in their late thirties and early forties even give a passing thought to.  However, after multiple retinal detachments, it’s now pretty much top of my greatest fears list.  I fear more for my ‘good’ left eye than I do for my bad right eye, because I rely on it for everything.  If my left eye was in the same state as my right, I wouldn’t be able to drive, I wouldn’t be able to see people’s faces properly, I wouldn’t be able to read, or do my job, I wouldn’t be able to enjoy beautiful colours, or watch the birds in my garden, or admire art exhibitions, or go geocaching… the list is endless.  Sometimes I get very gloomy and depressed thinking about all the things I wouldn’t be able to do, and other times I just try not to focus on it (pun intended).

However, my sight problems have also made me think a lot more about how I might do certain things if the worst ever does happen to my ‘good’ eye, and it’s also made me wonder how people who are blind or severely visually impaired manage with certain tasks.  A while ago, I explored one aspect of this in terms of how visually impaired (VI) people cope with cooking.  You can read about this in my posts Dinner in the dark and Blind baking.  The latter also contains a YouTube video of my sister attempting to bake a cake with her eyes closed: I defy anyone to watch it and manage not to laugh, although hopefully it will also make people think.

As a result of all this wondering about how people cope, and internal torture as I contemplate my own visual future, I seem to have developed an increased awareness of VI people when they cross my path as I go about my daily life.  A few times now I’ve seen a guy with a white cane on campus at the university where I work, walking purposefully along, swiping his cane from side to side in front of him.  One day, he was walking along a very narrow, uneven path, flanked on one side by a bank down to the road and on the other side by a somewhat unruly hedge.  I wanted to stop him and ask him how he managed it; whether it was difficult using the cane and how he copes on the rest of campus.  I often notice things on campus and mutter to myself, “That would be a nightmare for a severely visually impaired person!”  Of course, I didn’t stop him.  Mainly because a lesser fear of mine is that of talking to people I don’t know.

Instead, I went home and listened to a podcast about how severely VI or blind people navigate.  I learned that they rely on sound a good deal, and that some tap their cane along the ground and  listen to the sound coming back to help them orient themselves  and get around.  I learned that weather conditions can have a huge impact on navigation.  Apparently snow is the worst, because of course it covers paths making it very easy to rapidly become completely lost.  One person said that she hates the rain because it dampens down sounds and makes it much more difficult to hear things properly.  She said that she can’t wear a hood as that blocks out even more sound, and she can’t use an umbrella as it’s too difficult to navigate with a cane or a guide dog in one hand and an umbrella in the other.  So as well as the annoyance of the rain making navigation more difficult, she also inevitably gets soaked.

Some time after listening to all this, I was standing waiting in the railway station one day when I spotted an older man with a white cane making his way through the door.  He walked past me and then stopped, fished his wallet out of his pocket, and proceeded to hold several bank cards very close to his face and scrutinise them carefully.  This took a few minutes, but he must have found the one he needed, as he put the other one back in his wallet and moved to return it to his pocket.  As he juggled wallet, card, and cane, he then dropped the card.  Immediately, he knelt down and began running his hands across the floor, searching for it.  Just imagine for a few minutes, having to run your hands over a filthy station floor in order to locate an object you’ve dropped, without knowing what they may come into contact with as you do so.  I quickly moved to find it for him, but then realised that he probably wouldn’t a) be able to see me properly, and b) realise that I was trying to help him.  So I said (which seemed a bit of a weird thing to say), “Do you want me to pick it up for you?”  “Yes please!”, he answered with relief in his voice, adding apologetically, “Sorry”.  I wanted to say, “No, no – don’t be sorry!”, and ask him how much he was able to see, and what was wrong with his eyes, and how he managed on the train… but I didn’t.  Instead I just said, “Don’t worry”, as I retrieved his bank card from where it had fallen almost underneath one of his feet, and placed it in his hand.  “Thank you”, he said, before moving off slowly to the ticket office.

Afterward, I wondered how long it would have taken him to find his card if I hadn’t picked it up for him, or whether anyone else would have helped him.  There were a few people around, but they all seemed busy with ticket machines / children / timetables and didn’t appear to notice.  Public places present so many more difficulties and variables than the home environment, and it seems just sheer common sense that people would surely help if they’re fortunate enough to have decent vision and see someone else struggling.

Visual fields

Living with peripheral vision loss can be a tad embarrassing at times.  It’s caused me to let out a loud girly squeal whilst using the photocopier at work, when the Dean (no less) suddenly appeared on my bad side, seemingly out of nowhere, and boomed “Good morning!” at me.  It’s resulted in me leaping a foot in the air and bashing my knuckles on the hand-dryer in the loo at work, when a student materialised out of thin air at the hand-dryer alongside me.  It’s caused me to berate my good friend when she spotted me in the distance one day and ran to catch up with me, grabbing my right arm as she did so and thereby scaring the living daylights out of me.  I frequently jump violently and then swear with equal violence under my breath when a cyclist whizzes past me as I walk along the paths on campus.  After stumbling over students’ bags in the entrance to my workplace on several occasions, I now walk round and use a different door if I need to enter or exit at the time a lecture is due to start or finish.  Last but not least, I’ve acquired some interesting bruises on my right shoulder due to various minor mishaps.

The loss of peripheral vision in my right eye is due to the 360 degree laser surgery which was done in an attempt to stop the retina from re-detaching and to try and save my central vision.  I suspect the three retinectomies (where part of the retina which won’t lie flat is physically cut away) probably haven’t helped matters, either.  Of course, unless people have actually experienced loss of peripheral vision themselves, it’s difficult to expect them to fully understand.  I thought perhaps a visual interpretation might help, and therefore sought the assistance of my personal patient photographer, who happily doubled up as a person with properly working peepers.  (It’s such a shame that the ‘h’ in ‘photographer’ messes up the alliteration there; however, I digress…)  Our highly scientific peripheral vision experiments when looking at the fields just down the road from my house, followed by extensive jiggery pokery with photo-editing software, led to the following results…

The picture below shows the complete field of vision of a person with properly working peepers, with both eyes open:

Fields

The visual field of someone with ‘normal’ vision.

The following picture shows the field of vision of both a person with properly working peepers and myself, when our right eyes are closed (so looking only through the left eye):

fov-res-w

Visual field of left eye.

The next picture shows the field of vision of a person with properly working peepers, whose left eye is closed (so looking through the right eye only):

fov-les-w-a

Visual field of right eye of someone with ‘normal’ vision.

The final picture (below) shows the field of vision in my right eye, with my left eye closed:

fov-les-w-e

Visual field of my right (RD) eye.

If you compare the last two pictures, you can get some idea of how much peripheral vision I’ve lost in my right eye.  If you look at these pictures in conjunction with the images in my earlier blog post, Do you see what I see?, this gives the most accurate representation possible of my waffy vision as it is at the current time.  So with that in mind, if you could kindly avoid sneaking up on me on my right-hand side, that’d be just grand…

Note: Grateful thanks to the patient photographer for producing these images for me and putting up with extensive peripheral vision analysis in the process.