Monthly Archives: March 2019


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.  


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:

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’


‘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: