Confession time.  I, the Fakebook hating activist who believes that the blue and white logo needs burning atop of a pile of rumours, gossip and snaky lies, have an addiction.  It, like all great loves, is one that has grown from small beginnings.  No grand passion but a liking, respect and interest which has grown into a distraction that loses me large chunks of time.  These fractures have recently become ruptured by an earthquake of activity and I keep falling into the seismic cracks…but what keeps sucking me in?  Bloody Instagram, that’s what.

Why do I love it? Where do I start! The first thing that captured me was that it was like being able to create my very own glossy magazine.  Following all the fashion houses, interesting travel destinations, house and garden inspiration, and obscure bands that only me and Him like, kept me entertained for hours.  Glorious mini films about Chanel’s latest lippy.  Tutes on how to create the perfect smoky eye by Dior.  Fabulous Fendi trends kept me entertained.  Presents were sourced and inspiration for life goals ensued.

Then the snowball effect happened.  The feeling of escapism spread as I coerced various friends and family members to join.  Ensnaring by  sending them images, links, items I coveted, things I knew they’d fall in love with.  It became a aspirational fantasy world; like a magazine where I’d once folded the pages.  Because aspirations are good right?

Then the fan girl thing started.  Various celebs who caught my eye and imagination.  I accumulated-them bit by bit.  Little windows into their lives:  Noel Fielding’s latest look (my goodness how is adore the man), breakfast with the Beckhams (who knew I’d actually start to like VB and her ‘kisses’?) and the fascinatingly hilarious antics of @hotpatooties – is she ever going to finish that book?  What once started as a passing interest became something voyeuristic, another form of people watching.  And judging by the other seven hundred and ninety nine point nine hundred and ninety nine followers, I can’t be alone.  And what do we learn from all this exposure to millions of lives?  We are all the same.  Dealing with the same shite every day of our lives: cooking, family time, doggie walking, holidaying, life changing experiences…all the fun stuff we feel compelled to share.  But not just that, the crap too: heartbreak, tragedy, pokes at society and it’s preconceptions smashed.  So many individuals opening up through the power of an image.  Don’t get me wrong, I’m not fooled by the carefully stage managed stories and images, or the power of a good filter.  However, when you know when you gain your connoisseur’s  badge when you start binning off the fake and the boring (no, not shallow just discerning like when you choose your friends wisely).  But let’s not get too serious here, after all, celeb spotting and watching is a bit of fun (Him is rather good at this and fresh off the heels of spotting John Malkovich, he’s now literally bumped into Kasabian Tom with his sausage, chips and peas).  My various obsessions have kept me entertained and shown me that even though I don’t live on a Californian beach, in a shuttered house and have Rodeo Drive on my doorstep (Tom wasn’t, he was outside the chippy on the High Street) that I do have the North Sea, and a little quirky bungalow on the top of it.  Somewhere where (even I) can spy the white horses from the end of my drive on a wild day.  Where in my postage stamp garden I can hear said white horses crashing, and as for the shops…thank the Lord for inventing the blinkin’ internet on his eighth day – yes because there’s always a Monday morning after the sabbath.

Ashamedly, here’s confession number two, I’d spent years hiding from the ‘sites’ which dealt with, well, ‘sight’.  In my black days of limbo I needed to find out about a community I’d admittedly ignored.  Shunned maybe.  A community which I was scared of as I didn’t want to be ‘that woman of pity’.  The ill dressed lady with a dog and stick (yes, even I knew this was totally wrong of me).  However, in times of crisis you have to get over yourself and look around you (excuse the turn of phrase).  I needed to see that there was a world for me to evolve into.  And you wouldn’t believe how cowardly and inadequate I felt when I discovered what amazing individuals were doing.  Blind skiers, travellers, children…the most beautiful people leading incredible lives; so many journeys, stories and all hampered by ignorance of the wider world.

Inspired by others, I went public.  I had to.  I needed to share.  Not for sympathy or to make any point, but to become part of the bigger picture.  Now we all know that although my sight is improving in my right eye that I’ll never be cured.  I’ll never drive or be able to retrain as an airline pilot (ambition aged 11).  I’ll always hold someone’s hand when going into an atmospheric restaurant (hand holding is good so I don’t care),  I will try really hard not to knock any yellow signs over – but I will as I won’t bloody see them, and, it appears, that I’ll need to start wearing sunglasses to go shopping, as the bright lights trigger mighty migraines after fifteen minutes.    This acceptance left me with a compulsion to explore and share.  And I did.  This has led to different people wanting to share my blog, share my journey, spread the word.  So, with a heavy anxious heart, I went global (it’s like becoming a PLC but with none of the share price but with a sense of opening new doors and entering unchartered waters).  This devil may care attitude came with the ability to hashtag it out there.  Nerve racking, I’ve met a few ‘interesting people’ (the negative side of the internet is that it also attracts weirdos) And this is where it became interesting…

Who knew what I’d learn? Well for a start it put me firmly in my place.  Little fish, massive pond springs to mind.  There I am flapping on about my blinking little life from the edge of the world, and there’s thousands just like me in various pockets around the world.  Yeah you get the ones who only follow for a follow, but you get the ones who link you to new worlds and horizons.

Where do I start?

Well for a start I’ve discovered visually impaired musicians other than the Wonder himself,  bloggers, documentary makers, charities, blind tech guys who are a mine of information, and a blind artist in the Caribbean.  We all know Monet was losing his sight and this was the reason for his style but have we forgotten that the very word ‘possible’ blinks at us from ‘impossible’?  My own mama always reiterated the statement ‘there’s no such word as can’t’…besides, as I keep telling people, when one sense diminishes others grow stronger.  That’s why I have the hearing of a bat, I can smell like an elephant (I’ve an aversion to odours and should have shares in various products like Michael Kors, Yankee Candles and Zoflora), I’m very sensitive and love good food (I can’t eat cardboard ready meals and you won’t catch my near the golden arches or the famous colonel).

But, as usual, my ramblings have climbed and grown like glorious roses in bloom, or you might say like the annoying Japanese knotweed (you decide).  So, I’ll leave you with my two highlights from Insta-world this week:

Due to the high amount of Greek stuff I follow and post.  (Years of holidays are the dead giveaway) it appears I’ve attracted followers who understand:

a. I enjoy Greece,

b. (You might think I’m boring but…) I’d been to loads of places until I found my spiritual home, of which they share similar images.

and c. I now have new Greek friends who suggest where we should travel to next.  If only I had a money tree…

Who needs the Lonely Planet guide?

My other favourite and hilarious moment was when I shared a picture of Rosie Dog on the beach and she was offered a modelling contract.  I mean seriously, three beautiful daughters, a talented family of: writers, dancers, performers, academics – all of us, and the RDog is offered a contract the minute I post one little picture of her!

Obviously there are many pitfalls when courting the technological world.  I was the biggest hater.  I still can’t stand much of it.  However, it opens up doors and pathways in a way we’ve never been able to before.  Celebrating diversity and affording people the opportunity to understand our inner struggles and journeys is surely a platform for help and change.  Ultimately it’s like everything in life: take it all with a pinch of salt, try to see the good, and remember, it’s how you treat it – just like those around you.

So what has left me scrambling for the kids Easter egg hunt chocolate (I’m going to have to order some more) this week?  Was it the first world problem of not being able to wear eye make up (Prof’s orders), or the fact my ‘price of a reasonably priced car’ (I also need to buy one of those too) eye is swollen (let’s not go there – just cross everything).  No, I’m particularly worried about persona, and, so to speak, the one we portray.

Do you wear a name badge?  A name badge identifies you as a member of staff at your place of work.  It enables the community who you converse with in your professional life, to be able to identify you and call you by your preferred name.  They can look at your clothing (what if it’s a hideous uniform?), check out your position (how far do they perceive you are up the food chain?), and clock your name.  Great idea labelling people isn’t it?  All the above information can be misleading.  A weathered looking cleaning woman in a tabard called ‘Mary’, could be a millionaire widow who spends half the year sunning herself on a cruise ship, and the other half keeping herself occupied cleaning an office block.  You just don’t know.  Some say you can tell a lot by a name (ask Katie Hopkins),.  Isabella (beautiful Italian), Doris (glamorous oldie with a blonde curly helmet of hair and smells of violets), and Deidre (dreary and with big glasses). You just don’t expect a Deidre to be a glamour-puss (sorry, if your name is Deidre I apologise profusely but stick with me and you’ll see where this is going).   We’ve all been there at some point, where you’re treated like poo because whatever cretin you’ve come across has made a snap decision on all of the above.  We feel outraged by it and the miscarriage of injustice can smart for hours, days, festering…preying and picking st you greatest insecurities.  It can make you draw attention to your flaws ‘yes, I know I’ve put weight on but I thought the whole of the Easter holidays you were allowed to eat chocolate for breakfast…’.  And we can try and hide them too ‘Yes, I’m fine’ whilst trying to navigate through a darkened room and trying to avoid the yellow signs, ‘I can recognise you really’…

You see, we don’t want to be caught out (disability or not) Having our weaknesses poured over; exposing our inner struggles and leaving us shaken and lying naked on the floor.  We don’t want to feel torn (see what I did there), we just want to feel safe.  But what about if your safety is out of your control?

This last week has been tough.  Visiting our nan (she’s Him’s Nan but I adopted her many years ago as our joint nan) after a dangerous fall, witnessed by the 91 year old fiancé (never a dull moment), I began to evaluate the use of labels.  Nan has dementia.  The once vibrant lady who was still golfing and playing badminton, well into her seventies, has fractured her hip and is very easily confused.  The worry we’ve been through has been awful, but all those keep fit classes she attended into her eighties, and her strong constitution got her through an emergency hip replacement and propelled her to the status of ‘Queen Margaret of Ward 33’, within hours.  Always a sociable person and a great conversationist, she was sitting holding court in the corner of the ward.  And, although no one has a clue what she’s going on about (even us who’ve heard it all before) she can still sing her hymns, recite her favourite poems, and crack many one liners.  To help everyone she has two pictures above her bed – someone falling and a butterfly.  Look around the ward and there are similar images above the other patients in their beds.  There were many falling pictures; these signify that they have had a fall.  There were three butterflies; these denote dementia.

Our Queen Margaret has  been living with this wicked illness for about five years now.  A cruel disease which has robbed her of her independence and love of adventure.  To help, in that time we’ve done many things to help her memory: pictures printed on T-shirts, mugs and placemats, of her great grandchildren doing various activities; photograph albums; a memory book and hampers of her favourite foods, (she loves her food and gets nasty when she hasn’t eaten) They all give her something to do and think about.  However, the journeys been quite terrible.  She’s scared of doctors, hospitals, she wants to stay with her family…only she can’t be left alone.  In her world we have to restart the same conversation every hour, where each time she looks at the memory book she thinks it’s the first time she’s seen it.  She loses loved ones regularly and she has to be reminded of people who’ve died on s daily basis (this is particularly awful when you witness the shadow of grief which slides across her face).  And me, the granddaughter-in-law she’s known for over twenty plus years, who she calls Rita ‘no, she was the babysitter’, or Wendy ‘she emigrated to Australia’…but it doesn’t matter if she doesn’t remember my name.  What’s in a name?  It’s just a label.  BUT, her eyes lit up with love and recognition when she sees us, she asked about my eyes (she does remember things) and she wanted to know where the ginger one was (Master moomintroll had been the day before and became a star attraction).  She also pulls memories from places and talks about long ago forgotten times we’d forgotten.  The fragility of the mind and the body is perfectly captured by the butterfly.

The good news is she’s recovering and hopefully we can now (because social services weren’t very helpful previously ‘we can’t help until she’s had a fall’.  However, they discounted the many fire scares and the need to disconnect the cooker) get her the professional help and support she needs.  Looking at her she looks strong, she can get angry, cry and perform to some degree to get her own way.  These have always been her inherent flaws.  At best she’s lively, kind, supportive, down to earth and full of love towards those who show her the same.  However, the little old lady with a butterfly and falling person above her bed don’t show any of these things.  To understand her you have to spend time with her, listen to her rambling stories, look at her memory book, sing songs with her.  An image or snapshot helps, but it takes time and patience to unpeel the layers.  Something the nurses have done wonderfully.

Although we try not to, we do make decisions based on scant information.  We don’t take the time to think.  Busy lives can make us lose sight and prejudices can occur without us even knowing.  Furthermore, we can be that friendly person who gives directions to the polite old Canadian man, who turns out to be a religious nut who tries to coerce us into going to a meeting condemning LGBT, abortions and same sex marriage (true story – hoodwinked).  The thing is, if like me and Him, you like people watching, what makes you decide on the different characters you construct for the players in your game?

SCENARIO:

You’re sitting on a bus and you look at the total stranger who has sat down next to you.  What do you see?  Is it an elderly lady with grey hair and a kind smile?  A young lad in a hoodie, with a sullen face, listening to music? Is it a good looking and well dressed (insert gender here), who makes you blush when you make eye contact? Or is it a person with a white cane looking at their phone?  The generic responses could be: pity, apprehension, lust and mistrust.

Who, out of the four above, would you choose to sit next to and why?

In reality, the old lady is wanted for shoplifting and has been running her own racketeering gang for countless years.  The young lad is an straight A student and is listening to King Lear in preparation for his a-level English Lit exam.  The good looker is a sociopath.  The blind person, well…So, would you alter your choice of bus companion with this new information?  Maybe your choice was based on your own age, world views, needs and life experience.  Maybe you choose due to your own insecurities and hang-ups.  Preconceptions, either way, can be judgemental, but the most dangerous results come from small worlds, which  breed narrow views.

Perceptions of what we think and know can be different to the reality.  Do you consider the reason why someone might be struggling?  Another’s poker face masking hidden turmoil?  I know the effect my cloak has had on my life.  Luckily, the people that matter have peeled back the mask and stuck around.  Others cut and run.  Current dreams of people and creatures in disguise plague me.  Also, there’s often stick in the media about people faking disabilities.  One such case is the backlash of the blind being able to use phones.  There is currently a campaign by the RNIB called #BlindPeopleUsePhones.  In fact, without phones we would struggle.  They can talk to us, direct us, read articles.  We can listen to music, talk, dictate and use the torch to find things on a dark floor.  Shamefully, I’ve sometimes wondered how certain things are possible: how can someone with ME study for a degree?  How can someone with depression be a hilarious comedian?  I think it says more about me than them.

So, do we all need a picture above our heads?  Maybe a hologram of a thought bubble above each of our heads which gives an insight into our psyches? Mind could be a black cloud, with a rainbow with a glittery eye patch strung across it.  What would yours be?  However, there’s a much simpler solution and it’s one which takes no technology and expertise.  What we all in fact need to do is not be a book cover judger, but instead we need to look at people as a blank canvas and paint a beautiful picture of their souls.  Kindness, forgiveness and a smile can build a thousand bridges.  Everyone’s on a journey, you just don’t understand the roads they have to take to get there.

Now look in the mirror, who are you and what journey are you on?  And think about what you would like people to understand about you.

Useful links: 

http://www.retinauk.org.uk/

https://www.rnib.org.uk/

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentos

I’m going to tell you a story about a little girl who dreamed of wearing a tutu everyday to work.  Who thought life would be about fur, feathers, sequins, pointe shoes and tiaras.  But, like most fairy stories, there’s always a catch: a frog to kiss, a name to recall, or a spell to be broken.  As evil threatens the happy ever after, can fairy tales come true?

Once upon a time…

When I was five, I learnt to dance.  Not only did I learn, i fell in love with moving to music.  It seemed I had rhythm, and my teachers agreed.  It turned out I was rather good.

When I was a teenager, it became apparent I could paint.  I’d spend hours sketching, drawing, photographing and painting the landscape around me.  I’d spend hours watching the sky change and sunsets would mesmerise me.  It also turned out I was rather good.

You’d think I was destined for greatness, wouldn’t you?

At the age of fifteen, I got on a stage (something I did every day and loved) and couldn’t see where I was going anymore.  All I could see was black.  I danced but I had no idea of what I was doing was correct.  The lights were dazzling me.  I couldn’t understand why it was just me, no one else had a problem.  Ever dance I needed to over think and work out: the joy of freedom was gone.  What is dance without unadulterated freedom?  So, the problem began to unravel.  I became insular and felt alone: how could anyone understand?  What was wrong with me?  Why was I so strange?  You see dancing was my life and I lived and breathed the stage.  My second family were in the studio but when I began to falter, I felt ashamed.  I felt I was letting everyone down.  I felt useless as my dreams and aspirations began to crumble…

When I was sixteen I went to study art and design.  I’d spend hours reproducing images of the castle and cathedral – and city life, where I was studying.  However, I couldn’t see to produce some fine detailed work.  I’d become frustrated and (again) couldn’t understand why no one else was having the same problems.  I’d miss lectures because I couldn’t find the lecture room.  I had no one to talk to.  What should I do? I’d think and then hide it all away behind a smile.  They didn’t understand.  People never did.  

I felt useless.  A third class citizen.  Worthless.

When I left school my art teacher wrote on my shirt ‘talent is rare, don’t waste it’.  So, when all my dreams turned to dust, I felt like I had to hide.  These capabilities which I had to bury away as they reminded me of disappointment and failure.  Ashamed.  

But, I’m like an irritating rash that won’t go away.  Therefore, like the warrior I can be, I grew, I moved on and built a fortress for myself.  High in my tower I learnt to lug the the fortified walls everywhere, the cumbersome bricks, my armour, my coping strategies bolstering me.  I didn’t want to feel inadequate and stupid again.  And I managed for a while.

Now the story momentarily stops here.  Most tales have a moral and it’s important we remember and identify with this.  Otherwise, what is the point?  

So, Imagine that; almost living a half life.  Imagine being held back by something you can’t share or explain.  It’s very lonely.  

Maybe you can.  I’m guessing in one way or another that you know what I’m talking about.  Disabilities – whether visible or hidden, maybe? Similarly, mental illness: depression, anxiety, PTSD…unfortunately, I don’t believe that anyone lives a painless life (apart from that woman in Scotland who feels no pain).  We all have our cross to bear.  But I digress…

Rolling back to the story: 

When I was circling forty (ahem), the bricks began to crumble.  The thing is stuff catches up with you.  So, along with shattered dreams of being a prima Ballerina (I really missed the boat there) or becoming the bright young thing of the design world, my physical world began to fade in front of my eyes.  So, I reverted to that scared young girl and hid.  Feelings resurfaced.  Long hidden insecurities were pulled from the recesses of my soul.  I found that my head was not a nice place to be.  

I was Snow White and i’d eaten the poison apple.  Vultures were circling for my body (dramatic I know but people love to crow).  And all I could think was ‘is this as good as it gets?’ (It was like a kid/life-crisis/visually-impaired/breakdown) So what would you do?  

Firstly, I slept, hid, avoided the world.  Like a wounded animal I have to rest.  And then I woke up and like a cyclops, I cast my good eye around to see what I could see.  Well, I thought, I’m not dead yet. I took pleasure in the things that mattered the most: my family, my friends and my Rosie Dog.  But as grateful and as blessed as I felt to have, and there’s no denying this, the best people in my life, it (as nothing ever is for this high maintenance rambler) was not enough.

So, I reverted to my other animal instinct.  I fought. 

At the combined age of all my children minus six (vain as I am I can’t even mouth the numbers) I took a risk.  Faced with a life languishing in dimly lit rooms, but not too dim I’d walk into anything, i longed for the days when I could actually see something!  I knew I’d take the RP in all its tunnelled glory.  I made my peace with my lack of night vision.  I knew things needed to change though.  And like all great protagonists, I had to find a way…A chance conversation, a chat with an intelligent lady who doesn’t realise how utterly amazing she’d is, and voila! I had a contact.  With years of the words ‘there’s no hope’, ‘what you have is incurable’, ‘things won’t ever get better’ and my personal favourite ‘go home and be a mother to your children and stop worrying about a career’, I saw a small chink of light.  Could he?  Could he really polish (not your country Karl) my world and help me open up my life once more?  

It was a 60/40 gamble.

On Wednesday 3rd April 2019,  I visited the Prof.  My first outing (besides the bag lady daily loon walk) since D-Day and with the sun in the sky, I was unleashed unto the world.  Who knew the world was so vivid?  Him likened me to a gazelle, as (repeatedly) I was running off from him.  Comments of ‘you think you’re s single woman do you?’ and ‘you’re all confident now, but wait until you’re tripping over a yellow sign’.  Steps have been my enemy, so running up and down the precariously long tube escalators was a dream come true (trust me, if you’d been to the hellish place I’d been, You’d take the small victories too).  Therefore, when I windmilled into clinic with breathless apologies, I was met with smiles and congratulations – sorry I’m late but I did run you know.  On my own!’

‘So the gamble paid off?’ He smiled…

I bet he can’t wait to do my left eye, after all the high jinx we had in the theatre! 

They say that you have to teach rock bottom to rebuild.  I’m haven’t rebuilt a tower though, they’re too structured and boring,  after all, I’m a bohemian at heart.  I’m growing a garden of vibrant flowers.  A thousand aromas assaulting the senses.  I am reaching out and breaking boundaries – why not? 

And, although this could be a happy ever after, this story is going to run and run.  There are dreams to be realised and exciting journeys to be had.  This is only the beginning of my fourth chapter; it’s only Bon Jovi! so we’re only half way there…

What’s the biggest ‘do’ you’ve ever attended?  That left you reeling for days, with snapshots of hazy memories filtering through.  Zoned you out well into the next week?  That hit you in the smacker and kept you high for days, with the sudden come down and hangover, disabling you with so much sleep that you begin to suspect you require a diagnosis of narcolepsy?  

I’ve been racking my sleep addled, drug smogged brain and can only come up with the whirlwind of my wedding.  Or, as it became known (apart from the time I had to endure a ‘freezing ass off’ December night, in an icy cold church, listening to Michael Morpurgo read out his latest book, whilst matchsticking my eyes open so I didn’t lose the coach-load of shivering year sevens surrounding me. And yawn) ‘The Longest Day of My Life’.  That wedding  weekend I never slept from Friday morning until Sunday night, I hardly ate (apart from the plane food on Sunday evening which consisted of Jacobs crackers and Cup-a-Soup) and I was mainly powered by vodka and adrenaline.  A day which began with a sick 4 year old; progressing to me wearing a wedding dress, whilst juggling a 7 month old baby, who’d done a massive inconvenient poo , just before the wedding cars arrived; a lengthy photo shoot to rival Vogue’s July edition; a line up longer than the one at the Royal Variety Performance; most excellent speeches (well done lads, they spent hours rehearsing) which lasted into the evening reception and caused a queue at the function room doors; plus general fun, high-jinx and shenanigans, that were performed to a back beat of a jazz band and an old-time rock band roadie now masquerading as a wedding DJ.  Followed by a Sunday morning trip to AandE, severe lack of time, and a build up of nervous alcohol propelling us into the airport with my hair in my ‘wedding up-do avec diamanté hair slides, looking like a rough Grace Kelly, and where Him and I did our holiday shopping (we weren’t very organised back then).  Then the dramatic speedboat ‘Bond-Like’ arrival in Venice culminating in us collapsing into bed and awaking twelve hours later in a fug of wonder at where are we? And, was it all a dream?  The sleepwalking vivid dream state continuing once upon opening the shutters and an actual man wearing a striped sweater, with actual pole in hand, on a narrow boat, was singing the Cornetto song.  I cried and declared ‘it’s like bring in a film!’

It’s exhausting just recalling those 48 hours…and I’m only skimming the details here, but that’s all another story…

But, you don’t want to know about that.  Big Do 2019, you had to be there.  

So, 

Friday 29th March.  Westminster, London.  Thousands marched into Parliament Square.  Westminster Bridge was closed, helicopters were hovering over the Thames.  Meanwhile, Him and I watched the whole thing from my hospital window.  High up on the twelfth floor of Guys and St Thomas Hospital.  The tension was palpable (and that was only Him as he’d not been fed on time).  We’d been building up to this for weeks.  I’d actually talked myself out of it, numerous times.  However, due to the kidney I’d had to sell to pay for the op, and the required balance paid, I didn’t think (seeing as we’d used the toilet and I’d opened the welcome pack) that they’d let us cut loose and get a refund.  So, they were stuck with us and me in my complimentary red totes.

To say I was ready would be a lie.  As in all times of adversity, I can appear quite silly and flippant.  I kept trying to make the nurses and doctors laugh.  Lame jokes about ‘needles in eyes? I’ve had three children, it can’t hurt that much!’ Made the anaesthetist raise his eyes to the heavens and say ‘without an epidural?’ (Says something for London I’d say), I told him I was made of strong stuff, seems I wasn’t, but more about that later…so the bonhomie continued.  My nurse was called Queen and I explained that I was also named after the Queen – so that proved how important we both were.  I was promised a mozzarella and tomato salad, plus fresh fruit, (I’m never going to The NHS again) upon return, and my lovely nurse redid my hair and wrapped me in a warm blanket – I was cosseted and well looked after, but they sensed a runner.  

My worried Gromit face prompted kindness in abundance.  They told me to shout ‘that hurts’ if it did.  I got a shoulder massage and I was told that I wasn’t to give wine up for lent (we had an abstaining from chocolate conversation).  I was lulled, I rambled, the drugs were working and I was all floaty, best party ever, needles? Pah! More rambles ‘you should read my blog, you’ll all be in it’, ‘really?’, more rambling (they only know what I said – oh Lordy) an ‘that hurts’ and pretty much can’t remember the rest.  I came to whilst being moved to recovery.  Fuzzy, floaty and feeling like I’d had a really bang in’ night out.  I loved everyone, they were all my best friends…My eyes, my worry? I’d survived and the beautiful words from my lovely surgeon were ‘I’m really pleased how it went’.  

That night I slept like a psychedelic willo the wisp, from a Mighty Boosh sketch.  Boom, Saturday morning and as I walked to my post op with Dr S (another new favourite person), looking like a Brexiteer casualty from Parliament Square – eye patch in-situ and woozy from too much chanting.  The masses around Waterloo didn’t blink an eye (unlike my fellow breakfasting guests who obviously thought I’d been thumped by another protester).  High on adrenaline and sunshine, the eye was revelled and already there was a difference.  I skipped (well not quite.  I’m not even allowed to run for two weeks) out of the clinic, into the sunshine and felt more optimistic than I had in a while.  

Cut to Saturday night.  The bubble burst and the tears came.  Why? Well for that I have no answer.  I went on to sleep for over ten hours (that never happens) and I seemed to have developed short term memory loss overnight:did I just take some tablets (I require a carer it seems.  I wonder if one of my new crew will come over?)  My fitness levels have depleted to that of an ageing pack horse and my concentration levels have reached such a low level that this blog has taken me literally hours to write.  My worry is that in the aftermath of Friday, that not only are the government still arguing like bratty kids who’ve never been told no, and that they all seem to have erased the word ‘democracy’ from the OED, but that the Prof removed my genius, my brains, my sharpness (I’ll never get that job at number 10 now).  By sticking needles in my eyes and removing all the ‘gubbins’, did he actually remove my best most vital assets?  

So what would I rather?  Be me, with crappy eyes and a rambling rose brain, or spanky vision and nothing to say?  Well, luckily for me we’ve six weeks until we really know.  Compromise is they key: Yes, I can see more. Yes, I still have RP (and will be stumbling around in the dark, falling over yellow signs and not see whose stood to my left and right, until the day they sing Champagne Supernovain church for me).  And yes, I wrote the blog in the end.  But, it’s worth knowing that whatever I lose along the way, I’m determined I’m no longer losing me. 

Lucky Prof gets to see me again on Wednesday.  I bet he can’t wait.

Useful links: 

http://www.retinauk.org.uk/

https://www.rnib.org.uk/

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentos