B Five levels and f hell - Barry Hill

Losing your eyesight has been compared to experiencing the death of a loved one.  We, apparently, go through five stages of grief that, for some, could feel something like Dante’s ‘Divine Comedy’ but probably without the middle section of Purgatory. If you’ve not read this epic poem, I’m not surprised.  It’s a 14,233 line, well, epic.  If you see a limerick as a sprint, this poem is like a marathon… on your knees… in the Himalia’s.  For those of you learning Italian as a second language, you might like to try to read it in its original Italian for that extra sole-destroying challenge.


For a change, I’m not going to use poetic licence to exaggerate in this blog.  I’m going to buck the trend and be serious and informative… mostly.


So, back to the sight loss grieving process.  Although they aren’t necessarily experienced in this order, the stages of grief go something like this.


Let’s start with denial, as many people experiencing sight loss for the first time do.  As you can imagine, being told by your consultant that he/she’s very sorry, but it’s permanent can be damned shattering.  For many, the first reaction is to deny the reality of the situation.  It is only natural to cling on to the hope like a sick child clings on to his monkey (I had a monkey, not a teddy bear.  What of it?) that the sight loss is not permanent or that the test results are wrong.  I’m not being totally flippant about the monkey/teddy bear.  Denial is a sort of comfort, cushioning the blow.  Still, if I’m going to use any childhood analogy, the duvet over the head is probably more accurate.  If it can stop monsters back then, which it evidentially did, then it can stop monsters now.  This is a normal defence reaction to the immediate shock and nothing to feel bad about in the slightest.  Still, it’s not good to call the consultant a witless quack who doesn’t know his arse from his ophthalmoscope.


This denial can last for a short time, although it can go on forever to some extent.    There is nothing wrong with hope and conviction.  We have medical breakthroughs all the time. 


As the comfort blanket effects of denial begin to fade and the kick-in-the-guts reality of permanent sight loss sinks in, your brain flips your emotions into the second level of grief.  the intense ‘Oh shit!’ emotion that might be too much to cope with turns into anger.  Popular phrases to use at this time include "Why me?  It's not fair!"; "How can this happen to me?"; '"Who is to blame?"; "Why would God let this happen?" and “Who stole my monkey?”.  Ok, maybe it’s only me who has that last one as specific as that, but you get the sentiment.


The anger may be aimed at inanimate objects that might be thrown against the wall or kicked or punched, but you’d best watch this as you can’t judge precisely where they are and who’s stood in front of you (Sorry gran).  


You might blow your top at complete strangers, although that shop assistant deserved it.  I mean, packing my bread under potatoes.  She deserved to be reduced to a snivelling wreck cowering under the conveyer belt.  You might find that friends or family become the focus of pointless arguments.  I have a vague recollection of an argument over a custard tart that resulted in one of us walking out.  I can’t even remember what the problem was with the custard tart.


The most common target for anger is the doctor who diagnosed the visual impairment and was unable to cure it.  Rationally, we know that the doctor would have tried their best, but, emotionally, they are a witless quack.  Good job we can no longer see them to punch their lights out really.


With sudden or severe sight loss comes a feeling of helplessness and vulnerability.  Some people just give into it and become cocooned in virtual cotton wool almost totally reliant on other people.  Some people are not as stoic as others, so don’t go telling them that they need a bit of a kick up the arse.  It won’t give them their independence back and it’s too easy to kick a blind man.


Still, a more common reaction is often a need to regain control.  You may want to do something active yourself to fix the sight loss.  After all, that witless quack isn’t. 


After a while of being blind, I took matters into my own hands.  It crossed my mind to get a second opinion from another doctor. Perhaps another consultant might have better ideas.  I’ve heard some people going private and paying for what they believe is better treatment.  Maybe they have a better class of quack on Harley Street.


The one I went for was alternative medicine.  If you ask people who know me, they’ll tell you that I cope very well with being blind and that I accepted it very quickly.  Thing is, after around three or four years, where medical science failed, I went to a faith healer to see if they could do something to cure my blindness.  It wasn’t desperation it was hope.  In retrospect, I now see that it was part of this taking control… or maybe it was denial.  Probably a lot of one and a bit of the other.


A popular method that has a lot of merit is to change your lifestyle to a healthier one.  With many eye conditions, a healthier diet and exercise might not cure the condition, but it certainly helps to stop it getting worse quickly.  Of course, that won’t work with me, so I’ll continue with my regime of eating, drinking and being merry.  Seriously, I do like to watch what I eat and do a little exercise.  Everything in moderation seems to work quite well so far.  When the doc tells me that the three pound of cheese I eat a week isn’t moderation, I’ll cut back a little.


These are all useful coping tools, but the risk here is that anything tried might result in disappointment and resentment.  Basically, you need to be an optimistic cynic.  Expect the best but prepare for the worst.


The next stage is probably the most damaging, akin to the 13th level of Dante’s Hell perhaps.  Churchill called it his black dog, which isn’t fair on my black lab guide dog who is as much fun as you can cram into four and a half stone of fur and legs. 


Still, depression is not an inevitable consequence of sight loss, but it is common.  Scary statistic time: An estimated one-third of older adults with sight loss report clinically significant depressive symptoms.  So, if you have any older relatives who might show signs, talk to someone about it.


It’s not always the sight loss itself that causes depression, it is more related to the impact the sight loss has on your ability, or lack of ability, to carry out day-to-day tasks.  Not being able to drive any more really curtails your hobby of dogging in secluded carparks, and it’s a bitch snow-boarding when you can’t see that tree coming at you at 30mph.


Hey, that snow-boarding has just reminded me of a story.  Are you sitting comfortably children?  Then I’ll begin.


In my blind life I have come across two remarkable blind women who became inspirations to me.  One taught me Braille and that you can live a very full and independent life as a blind person.  I think you say that dinner with the Queen now and then is part of a full life.  Thank you for inspiring me right back at the beginning, Geraldine.  I don’t know if I could have done it without you.


What has that got to do with snow-boarding, I hear you ask.  I’m coming to that.


The other inspiration was a blind acquaintance called Claire who used to ski.  Now, I’ve tried skiing as a blind person and found it extremely tiring having to get up off my backside every two minutes.  It’s one thing that I’m not proud to say that I failed miserably in.  Claire, on the other hand, is an expert at skiing.  She doesn’t stick to the nursery slopes, or even the intermediary ones.  Nope.  She likes the black runs.  Unbelievable, eh?  I’ll tell you how she does it.  She has a personal instructor going ahead of her, each of them wearing radio headsets.  He tells her when to turn left or right and by how much.  Thing is, when you want to turn right on skis, you push down with your left foot and vice versa, so this instructor has to say “right” when they’re going left and vice versa.  Even thinking about it now, I take my hat off to her.  Thank you very much for showing me that we can do anything we put our minds to, Claire.


The final stage is pretty much salvation as far as sight loss is concerned.  It’s also the biggest hurdle to get over.  Accept your sight loss.  Accepting your sight loss makes it so much easier to cope with life as a visually impaired person.  Sadly, not everyone with sight loss reaches this stage and may never see beyond anger or denial. 


The way to do it is to accept the inevitable future with a calm, retrospective view, and a stable condition of emotions.  Easier said than done.  I mean, when you’re told that you’re going to be blind for life, you aren’t readily going to say, “Cool.  Where’s the piano tuning school?”


Still, given time, many visually impaired people do come to accept their sight loss and even, perversely, see it as part of them.  Got to admit, I’d be reluctant to go for an operation to get my sight back unless it was a dead cert and it was full sight.  I’m happy as I am and cope quite well, thank you very much.  Why mess with it?


Just because you’ve gone through the five stages, it does not mean that you’ll not or cannot revisit any stage later in life.  I’m not saying that it’s like a drop-in centre – “Oh, I’ve just popped in for a cuppa and a slice of depression”.  It’s pretty much emotional baggage that someone has left lying around for you to trip over now and then.  It might even be triggered by an actual bag that someone has left on the floor for you to trip over.  You might simply kick it aside, but, equally, you might fall arse over tit right into it.


One final word on the five stages.  Not everyone who loses their sight goes through all the stages, and the order might jumble about.  If you are going through it, I hope that reading this blog helps you cope just that little bit more.  Knowing that what you are going through is not unique to you or your fault can sometimes get you through quicker.  Oh, and a cuddly monkey might help too.


For the record, although I milked that quack quip a lot in this blog, there are no witless quack consultants.  Some are better than others, but they are all miles better than me with eyes.


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