Category Archives: Uncategorized

The Power of an Image

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.

Hello, My Name is Rita and I’m Misunderstood…

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

A Ballerina and a Cyclops: a modern fairytale.

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…

Afterglow or Aftermath?

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

Free-Falling

There are reported to be ten thousand homeless people, every night, on the streets in the UK.  Ten thousand bodies drifting past you.  Do you ever look at them and wondered who they are? Where they’ve come from? Or how many of you have look the other way, feel wary of them? Are they addicts, criminals…Not your problem?

How many of you have considered what their story is?  

On our recent visit to London, we witnessed some difficult images: a row of tents off Trafalgar Square; a girl looking no older than my middle one, looking straight through me with dead haunting eyes; a young man who appeared clean cut, his clothes were of good quality and labelling.  He looked like my friend’s son.  What on earth was he doing begging for money?  The answer is none of us know.  Those children could be mine or yours.  What triggered their situation? whether  abuse, mental health problems or running from fractured families.  All of which can seem insurmountable problems to solve.  So they run…it’s an issue than spreads much further than the young.  I recently watched a news report about a couple who’d lost everything.  They had worked all their lives and had been reduced to living in their car.  They were in their fifties and their future looked bleak.  What type of society do we live in, where these things have not only become the socially acknowledged, but accepted? 

The short answer is that we sometimes find it out easier to run away from something rather than confront it head on.   Whether it’s our own baggage or another’s.  You lead a busy life.  You keep you and yours safe. But is it right that society should choose to be blind? 

You see, I don’t choose to be going blind, in fact I fight every day for my sight.  Yet so many are blind sighted to people who are fighting battles they (me included) know nothing about.  We inherently judge, and try as we might, to be good people, we often miss the bigger picture.  And that’s why I blog.  It’s not about me but it’s about you, them, everyone.  The world can be a lonely place but it needn’t be.  

So, how do we change things?  My counsellor recently asked me what I did for a living.  I explained I taught English in a secondary school.  She then asked me to explain about the school and the children I teach.  We discussed the demographic and she rightly assumed that I have to differentiate for many different needs.  Supporting SEN students, dyslexia, poor literacy, partially sighted, EAL…she then asked me who differentiated for me?  The irony being that no one really did.  Running away and hiding from my disability was cowardly.  The children I teach humbling me because of their ability to just get on with it.  That fact that I’d learnt to build an environment when they felt comfortable to ask me for help and support.  

Instead I’ve had to adapt my life secretly.  I’ve used bright lights, magnifiers, spent hours in the opticians whilst we find the ‘very best prescription possible’.  I’ve spent years planning scenarios and escape routes from places I feel uncomfortable.  Getting to places early so I can recce the surroundings, turn lights on, find the toilets, get the lay of the land.  Checking for yellow floor signs that I always, always m, knock over! I’ve developed a fabulous memory and commit many images to it.  Memorising and storing up for a rainy day.  It’s helped me out of a great deal of situations and it’s also helped me maintain relationships, (I let people win arguments – even when I can remember the truth.  So don’t be fooled by vacant exterior).  But now I’ve begun to let go of the ‘social pride’, sick of living on a dangerous precipice and decided that it’s lonely on the edge.  I’ve taken the risk and I’m free-falling – it’s scary but exhilarating…

Luckily for me I’m now being given expert advice.  My good friend ‘Karl’ (name changed for anonymity) came round and demonstrated how to make tea as a blind person (Karl had previously demonstrated and burnt her finger as she didn’t take it out in time).  My middle daughter bought me two glamorous eye patches.  However, I can’t seem to live up to the model who styled them.  Him raised an eyebrow and told me to practise!  My wonderful friends have helped me beyond anything I ever dreamt of.  Without them I’m not sure I’d be brave enough to talk.  Their strength and support has propped me up.  I’ve also found friends in the strangest places.  We all hide away don’t we?  Being so loved by my family and friends prompted me to try to be more independent.  I attempted to walk somewhere on my own (no Rosie Dog either).  A tried and tested route.  Problems ensued when I had to cross a road with roadworks (I can’t cross roads).  I had a panic and Him had to pick me up as the other option was walking the long way home.  You live and learn but do you know what?  I might not be able to go it alone but I’m not dead yet and there’s a whole side of the world I haven’t seen.

Asking for help with my anxiety, depression and sight loss hasn’t been easy.  Like the homeless, my story is invisible and isolating.  There are badges (but I’m not a badge wearer unless you can buy me a fabulous broach which says it in diamonds) available which day ‘I’m partially sighted’ but I think I’d rather be led to the loo, in a posh restaurant, rather than spoiling my outfit with a plastic badge.  Maybe (we’ll see) I’ll end up with cane and dog.  What I do know is that I’m going on a two day course to teach me how to live with the sight I have.  See, free-falling is good, there’s no shame in asking for help.  

If you are living silently with something which scares, overwhelms, or physically makes you not live your life, if you’re on that precipice, please take the risk and ask for help.  And if you are one of the lucky ones (I know that there’s not that many of you), or you are walking around with your eyes closed and back turned, open up your arms and hold out your hands because no matter how bad things get, there’s always someone worse off than yourself.  Giving love and being loved, there’s nothing more precious.  

Postscript 

This blog is dedicated to the people of the christening and two funerals I have attended in three successive days.  NahNah Jah’s little sumo Master Carter.  May you live a life you’re truly proud of.  Embrace the adventure and run like the wind.

In loving memory to a lady who saw it all and certainly did live a life to be proud of.  A woman who enriched our lives for simply knowing her and often (In my Dad’s words) took us ‘around the world to Nairobi, with a stop off in Singapore on the way’.  God bless you Edna. We hope you’re finally at peace with Roy and your children.

And to my cousin of 48 years who died unexpectedly and suddenly.  If there ever was a reason to live life to the full…all my love xxxx

Coming Out of the Dark…

Throughout my rollercoaster existence, my dreams have always shaped my day and reflected my inner struggles.  That’s why the reoccurrence of the ‘I can’t walk as my legs cramp and won’t work’ dream came two nights in succession this week.  Both after dark days of anxiety and worry.  Don’t get me wrong, for the most part, I’ve felt more zen than zonked this week.  However, I think the implications of what the future may or may not hold, after the surgery, have hit me.  Therefore, applying Freudian theory to my dreams means, once again in my life, that I feel disabled in attaining my future goals and dreams.  In a nutshell, I’m struggling to reach my journey’s destination.

Deep I know.  But, this needs to be understood so I can succeed and move forward.  Therefore, I’ve had to start thinking about best/worst case scenarios.  Once upon a time I’d hide from such an idea! Firstly, because (I don’t know if you know this) I’m stubborn and refuse to let a little thing like a degenerative eye disease to get in the way of my plans.  Secondly, because when the dark days began to descend, I shoved my head in the metaphorical sand singing ‘Things Will Only Get Better’ in my head.  False optimism that never worked for Tony Blair and never worked for me.   So, as my good friend would say, it meant ‘the scales fell from my eyes’  and I began to tackle stuff head on.  This, being me, I started writing lists of the things I need to do before surgery (BS) and what future lays beyond the 29th (AS).  

BS (ironically named as sometimes, in my angrier moments, I shout this rather loudly in my head.  Along with ‘why me?’ And ‘Eff this BS’) I have decided to take the approach of someone going to an expensive retreat for the weekend.  This is rather funny in the fact that the hotel next to the hospital is a spa hotel.  ONE I WILL NOT BE ABLE TO USE!!! So, I am currently shedding the bag lady look and attending to hair, nails, skin and teeth (I want to look my best for the Prof as he is very Daniel Craig like and has a velvety Scottish accent).  I am also making sure I’m super fit:  Running, walking and spinning (the first two have been hard on the beach in gale force winds with one eye…).  I’m taking my vitamins and the Prof has me on high strength vitamin A wanker pills (actually spelt Warnke pills but I name them after whomever has upset me on the day).  I’m also on the happy pills, which, Him tells me, have made me less of a zombie and someone who now is able to watch telly, interact with others and look less dead behind the eyes.  So, getting my game on is getting me there slowly! Things left to do are: sorting the house out (it’s like I’ll never come back), shopping for beautiful eye patches (struggling to find the ones I want so I think I’ve found a niche business for sequinned and satin patches) and making my my hospital outfits with the goal of impressing the Prof (the Him will be panicking now but he shouldn’t, he should be pleased I’ve found a doctor who I like and trust).  

So, optimistic BS is revealing a new me.  Of course I’m plagued with nagging doubts and worries, but all of the above is keeping me busy because the AS list is rather more daunting.  What none of us actually know is: How bad has the RP affected the sight in my right eye?’  

RP, or Retinitis Pigmentosa is a degenerative disease of the retina.  Usually sparked in your teens (as was the case for me), it’s a condition that leaves you night blind and with a deterioration in your tunnel vision.  I was twelve when I realised I couldn’t see my m the dark and twenty two when I was as diagnosed.  Petrified, thinking I was going to wake up blind one day, I decided I wasn’t going to let it beat me.  I had my family, worked, gained my degree, overcoming many obstacles in my way.  I never let it define me and I’ve never let it hold me back.  However, over the past few months, it was starting to destroy me.  You see, I rarely talked about it.  At first I think it was because it didn’t matter.  However, later on I became embarrassed and ashamed; a lesser person and I didn’t want to ask for help.  To define the progress of the disease I have to turn to my good eye, the left.  You see, we all hope AS that the right eye is going to be more like that.  What can I actually see?

The disease has progressed to the point where I can now see better (not like you) in the dark.  I suffer with glare and tunnel vision.  The sun blinds me!  As do lights – if you ever see me walk into a bright room or super supermarket you’ll see me squint.  Also, within half an hour I have motion sickness and a headache.  How much of that will ease we don’t know.  The Prof reckons as I’m right handed that as my lead eye (which eye would you use to line up your aim to shoot your husband Mrs S?) that I’m at a severe disadvantage.  I also panic at stairs.  I have a fear of falling and struggle when they’re not marked on the edge.  I can see faces and features in my left eye but I can’t recognise people as their faces are just a blur in my right.    So, how much of this will improve we don’t know.  But what we do know is that there’s hope.  That golden number of 60%

Future dreams of AS are therefore shady and I’m unsure.  But what I do know is I’m not scared anymore as I’m coming out of the dark.  

Useful links: 

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

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

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentosa#rp

Getting My Game On.

Facing my fears, being brave…I have to brazen it out this week, and now I’m exhausted.  I’ve had a child’s maybe broken ankle (thankfully not but I was on the motorway when I got the call), a trip to the big smoke and a party and sleepover to contend with (no sleep and anxiety means I haven’t felt this since the late nineties).  To say I’ve wanted to hide away and cancel everything on numerous occasions, is no exaggeration.  

Firstly, the preparation of such events has been overwhelming.  The most exhausting being transforming from the bag lady look (which I’m now very good at sporting), to making myself look mildly presentable to be seen by the mass public.  So, off I cast the Rosie Dog haired thermal leggings, old jumpers and thick socks.  The dust has been blown off the make up bag and hairdryer.  Long forgotten clothes were reunited.  I found my wedding ring (I know!).  Meanwhile, Rosie Dog’s big brown eyes looked at me nervously, anticipating a lull in the ‘mad woman walks dog for miles’ scenario.  With the mask on I have had to face a world as a blind woman.  Easier said than done.  Luckily, my cheerleaders have been put in full force.  

Wednesday: London was big and daunting. My big cheerleader and recent tour guide – Him (who likes to ask questions about things I’ve already told him and give out orders like I’m a member of his staff) managed to get on my very last nerve (this is normal when I’m anxious.) Monosyllabic and tightly wound, I was ready to snap shouting ‘take me home. Take me home!’. You see, it was double whammy time: big wide world with PEOPLE IN IT and D-Day for prognosis.

After a relatively quiet tube in, but a snail-like cab, which dropped us off outside the wrong eye clinic (thank God – it looked like the booby prize), we eventually (rather shakily) reached the Prof’s clinic.  A lovely assistant (she made me herbal tea all day) lots of tests (disaster D minus results, but the ladies were very kind about it), drops (I now couldn’t see a thing at all!) , we eventually met the man himself.  

His initial response was that he wasn’t sure if he could help.  I admit, at this point I was teetering.  I’d already parted with my mortgage for the month (metaphorically) and he was going to send me off skittering back to the end of the earth on the East coast. However, with more discussion he began to understand that I wasn’t a madwoman (the loss of the bag lady threads helped) wanting a cure for the incurable but instead, I had another issue.  A spell under his microscope and he conceded that the lens in the front of my eye was a mess and needed sorting.  Further pictures were studied and he felt I had filthy jelly at the back of my eye.  

‘There was a chance’ he said, ‘A chance? ‘ I said. 

‘Yes, of removing the jelly.  I might work’

‘Might work? I parroted.

‘60% chance’

‘How?’

‘An operation.  2% chance it might go wrong’

At this point the stats and possibilities were whizzing through my head.  What did I have to lose that I hadn’t already lost? I need my life back, I thought.

‘Who does this and where do I sign?’

‘Me and they’re conditions…’

Hence another test, this time an ultrasound.  And this is where he got interested and really bought into helping me.  He was shocked at how back the retina looked.  He waved the picture at me and I laughed ‘I can’t see. It’s no good showing me!’

He helped me to Him and the lift and they discussed how the pictures told a real story.

‘Game on’ I thought.

One hour later, Him (my unreliable narrator) was guiding me on and off the tube and parading me around Trafalgar Square.  It was like playing blind man’s buff.  ‘Where are we?’ 

‘There’s pigeons and a tall thing’

‘That’s Nelson’s Column’ I exclaimed! And the game continued until he’d sat me down in a pub, so we could eat and debrief (he’d not eaten all day and he was getting ratty).  We discussed the day and both agreed we had no choice (SPOTTED 1: Him saw John Malkovich in a red phone box outside the pub) and with decision made (good job, I’d already signed the consent forms, although I couldn’t read what I’d signed), my tour guide and unreliable narrator left me at a barrier, caught me when I fell off the tube and let me walk in the rain through Green Park and the Mall (SPOTTED 2: the royal cavalcade , which Him informed me contained the Queen and Meghan arguing).  The walk helped no end: I needed head space away from the boards of, no idea why, an influx of french tourists.

What next?  D- Day is also Brexit day.  So, on the 29th I’m to have a procedure at St Thomas’ Hospital in London.  Although decided and booked, I lurch between elation and genuine panic.  Then yesterday, Little E had her party and sleepover.  And again my cheerleaders came out in force.  I couldn’t see a bloody thing and I could feel the panic bubbling up inside, but they were there.  Unshakeable support and love.  And I knew that even if things went even more horribly wrong, that at least I would still be surrounded by beautiful people who I love dearly. 

Do I get my life back?  Will we leave Europe without a deal?  Will life ever be the same after the 29th March? Time to get my game on.

And only I could have my operation opposite the Houses of Parliament on the biggest day in politics for many years! 

Useful links: 

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

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

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentosa#rp

A Stumbling In-betweener

 

 

This week not only have I had to discuss my feelings but confront them.  For so long I’ve hidden away because I’m ashamed of who I am.  You see, it’s embarrassing being me – falling into things, tripping up, walking into doors because I can’t tell if there glass there anymore, stumbling into a restaurant where people assume you’re drunk or stupid.  Then to go on to try and eat a meal with the table manners you’ve been taught but you can’t actually see what’s on your plate.  These dark moody restaurants might be sophisticated and romantic; I just end up stabbing around in the dark (literally with my fork).  Recently I suggested that if I’m going ‘out’ and now my decline in sight loss is also ‘out’, that I might be persuaded to have a cane and eye patch.  ‘Let them stare’ I heralded!  However, saying it is one thing – doing it is another.  That’s when I realised that I’m in the ‘in between’ stage – after denial, admittance, acceptance, comes ‘the in-between’

I used to play up to the drunken status: ‘let them think I’m a lush’.  That had to change though.  Living in a small (geographically and sometimes minded) town, I had to clean up my act.  This sent me underground.  Avoidance of situations, places and parties became my mantra.  Hiding was what I decided to do.  This can have different implications: you get dropped by people as they think you are either a) rude, b) boring, or c) hard work (yeah I am C but I yearn not to be!).  Result was that I became very lonely.  Not in the sense that I didn’t have loved ones around me, but lonely leading a double life.  So why did I make this choice?  To answer my own rhetorical question: I think I felt I had no other choice to survive.  

Speaking to an RNIB councellor this morning made me think.  The questions I had to consider all revolved around my very inner turmoil.  Turns out I’m completely normal to feel the way I do!  I’m a normal depressed person.  Now this is quite comforting and knowing this starts to ease the guilt.  You see, today I realised that I’m completely within my rights to have had a ‘mini-breakdown’.  I was told that ‘anyone would in my position’.  

Don’t get me wrong, although I’ve always struggled with RP, I’ve always had ways to cope.  My opticians have done all sorts of miraculous prescriptions and given me many patient hours of their time over the years.  Every hurdle I’ve encountered, since the age of 20, they’ve helped me find a way through.  Recent developments are beyond them.  I know this because their concerned faces during my (seems like) daily visits are both reassuringly supportive but also worrying.  

We looked yesterday at the photos of my retina.  This always puts me in a cold sweat as you never know if there’s been a deterioration of the cells dying.  Reassuringly (again) it was decided the RP isn’t really doing much.  It appears to cells are unchanged and this is brilliant news as it means it’s still pretty dormant.  The bad news is the fact that no one can work out why the back of my eye is cloudy.  The only way I can describe it is it’s like a fog.  I want to clean my eye as it’s like having dirty glasses.  When it gets so bad it goes to sleep, shuts down, I get sick, migraine etc.  And what was once a minor inconvenience, is now causing me to have to have someone with me to go to the shops.  

Being upfront with my situation and feelings about things is what I need to do.  Writing it down, sharing things, it’s cathartic and I want you all to understand.  I don’t require sympathy.  All I require is understanding.  And if an of you reading this are in a similar situation, please share, as it really does release the heavy burden that living with something awful can become. 

One thing I think I need to do is that the guilt I feel I need to let go of.  Him says that I’m my worst critic – whatever you think of me, times it by 10.  I owe people apologies for all those times people felt I was ‘sacking them off’.  Where it was easier to hide and let others think the worst of me, than actually say ‘I need help’.  Because, asking for help makes you feel like you’re a liability.  The guilt of putting myself first.  Overriding advice has been ‘be easy on yourself’.  This is something new to me as I always want to help people.  Helping myself doesn’t come naturally.  Unlike Cheryl Cole, I don’t think I’m worth it!

Next week has new hurdles.  A very expensive visit to a consultant and preparing ourselves for his diagnosis.  You reader (very Bronte, but then again I am also from the beautiful county that is Yorkshire) will need to prepare yourself’s for a mad ramble as I’ve got to keep talking: to move forward,  to become me, I’m sorry, but I’m going to have to.  

Useful links: 

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

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

http://www.retinasociety.org/

https://www.blindness.org/retinitis-pigmentosa#rp

What Have I Really Lost?

Learning to live with sight loss and telling people, is one of the hardest things I’ve ever had to do. Feelings of being afraid, isolated and ashamed are what hold you back first.  Pushing down the fear and moving forward not only takes bravery but people.  It’s the people around you that make it happen.  Help you move to a new and bright future…

After years of negative comments and ill educated people, I felt like dying.  Not in the corpse-like sense of the word but hiding from life.  Existing.  That was all I wanted. It got to the point if only half of me was up for it but bit by bit, that half went to quarter, then a tenth…until I reached the point of merely existing: it was all I could do.  A bright flame stuffed out.  Smouldering.  Gone.

However, existing was all very well and good.  Hiding away and burying one’s head in the sand can suffocate and the fight or flight instinct kicks in.  You see, I’m a survivor.  I realised I was being suffocated.  I pulled my head out and after some large gulps of air, some respite, some oxygen, I just wanted to feel alive again.  I wanted my life back.

Coming to terms with losing your sight, isn’t about self pity and tears, it’s about loss.  Losing something always makes my stomach turn.  I’ve always hated losing anything, no matter how small.  The very fact of this makes me fastidiously tidy.  Also, I have a way to commit things to memory: a mind palace so to speak.  Therefore, mostly I can cope with not losing things.  Unless one of the loved ones has moved something (cue irrational battle axe response), Sp I rarely lose the little things.  Although, this makes the loss of bigger things come much keener.  

In times of loss we turn to the ones we love.  We use each other as a crutch and channel strength like waves.  I am incredibly lucky to have had such people around me.  When I was expecting fire and brimstone, sackcloth and ashes, I have been covered in a blanket of kindness and wrapped in good advice.  

So what now?  With loss comes a need for solution.  A catharsis to help face the future.  I know there’s not always a longed for solution.  I’m not stupid:you can’t redirect the dead and you can’t reverse irreparable damage.  But there is always a solution.  I’m here to love my life and I’ll find a way through.  

Cheerleading

Sitting on the stands with Him, watching his beloved Wednesday, in the church of Hillsborough, makes you think.  I was struck by the importance great leaders (they are some what lacking and the new appointment seems to be sunning  himself in Barbados) I was also reminded of the damage poor leadership can do (prior appointments with strange ideas – including not speaking to his players?!?). However, what I more importantly realised was that what really mattered – the heart, soul  and the backbone, was what grows among the masses and no amount of promises, crazy initiatives and statements can alter the disciples faithfulness.  

It was a lack lustre game of two uneventful and fruitless halves.  If I was to say that watching the ill managed novices (who had played like Brazil’s finest on Boxing Day) was like watching paint dry – I wasn’t far off the mark (unlike the owls).  It was cold, a grey overcast drudge of s January day and an air of discontent was hanging heavily around us.  This said though, I felt strangely calm, invigorated and sated after our pilgrimage.  .  Not only did I feel serene but my thinking was piqued by the worried crowd – reminding me that how grateful I am to those who are always there.  

I’ve recently had quite a crisis of confidence.  If I said it has lasted at least six months, then I might be selling the time frame short.  Ii also know I’m not alone in feeling this way…like one of the lost boys of Wednesday: just like their inability to know what to do with a ball, I’ve doubted my ability to do anything: mother, teacher, writer, cook, runner, dog walker…I’ve felt such failure that some days I’ve felt like hiding underneath my bedcovers and refusing to come out.  But I haven’t.  My stubborn backbone has made me dig my heels in and not give up.  This is why I spotted an infinity with the whole scene in front of me.

In times of great uncertainty and constant change, we begin to look for something to anchor  us.  Without an anchor we lose focus and direction as we have no time to breathe and survey the journey we are on.  You can be, or have the greatest leader in the world, with the best plan – but an anchorless team who can’t make out the course of smooth sailing has no hope.  The players have had such a scenario and the side effects are varying.  Feelings of exclusion and inadequacy as new bosses mean new working relationships and divides.  Fear of failing and not fitting in with the new ethos, breaking confidence down.  Feelings of paranoia developing as you start to feel there’s an ulterior motive to each team selection.  It was frustrating to watch.  I wanted to tell them that they are brilliant and that 17.000 fans watching have to keep the faith – we in it for the long haul.  After all, you don’t stop supporting your team because they are having a tough time.  

You see, when we lose our way and constantly ask why? The answer can take some finding.  When you’re lost and can’t find your way, those around you also become frustrated and don’t always understand such soul destroying despondency that someone who ‘appears to have it all’ (I don’t but people make certain assumptions) can have so much selfish self pity.  Just like the fans becoming angry at the money wasted on wages – £30K a week when buying a ticket means making certain cutbacks.  However, the loyal, strong and true people stick around no matter how tough things get.

My words to Steve Bruce, when he takes over on the 1st are this:  

Treat each player individually.  

Empower them to become masters of their own destiny. Build a relationship of mutual respect between you all.  

Build a team.

Why? 

The fans will continue to be there.  

Supporters are called supporters for a reason.  And Wednesday supporters are the most steadfast and loyal in the 

world (my god, we have to be!).  

And to the board and Chansiri:

Give Bruce time to breathe.  

Let him build his team.  

Let him be their anchor and take them on a brilliantly chartered journey.  

After all, don’t the players and the fans deserve investment of time?

All the above breads loyalty.  But even though that’s part of a winning ingredient, what really matters is self worth.  From leadership, to player, to groundsman, to supporter…feeling valued means a happy and tight ship.   You see, no successful team requires a hierarchy, just bodies making informed and sensible choices, influenced by the love of the game and pride in their team.  

I’m lucky,  I’ve less people to please than the directors of SWFC have but my luck doesn’t end there.  I’ve got many a cheerleader – and in the most obscure places.  My thank yous and love for them are boundless.  After all, isn’t that the real journey?  Sharing your highs and lows with people you care about.  

My advice, to all of you who are embarking on 2019 with both, trepidation and wonder:  Choose your journey.  Believe your brilliance. Surround yourselves with cheerleaders.  You will end up winning whatever happens.