Tag Archives: retinitis Pigmentosa

The Love Affair of the Grid

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Love is a beautiful thing.  However, it can also be addictive and toxic.  Therefore, the question is: what turns something great into something terrible? 

Whilst everyone is talking about phone detox, I’m well in my depths of intoxicated addiction.  In a quiet moment I can be found listing, journaling and creating files in my notes; texting friends about the things that make me smile; communicating with the serious stuff; Googling what takes my fancy; and scrolling through instagram.      Instagram – some could say – is a devils playground.  A toxic breeding ground of poor mental health and body dysmorphia.  And this I understand.  But before I get into the pitfalls of the Gram, want to talk about my fascination with the grid.  

Instagram: a rabbit hole of people, products and social politics.  A place to lose myself in the ridiculous and beautiful.  A soundtrack for the fast moving world we live in.  A place which is regularly criticised and seen as an example of our decline in society.  But for me? I love it.

It’s probably over ten years since I’ve been able to comfortably read a magazine.  Once an addict to the glossies, I used to devour J17 and More as a teenager, moving onto Red , Cosmo and Vogue as a functioning adult.  I loved the glamour, the writing, I loved the aspirational style.  With a copy of Heat thrown in here and there, I kept myself well abreast of the celebrity gossip machine.   But, along with my ability to go out at night unaided, I had my voracious ability to devour print capped.  

The Kindle solved many of my issues.  But as gleeful as I was that I was able to read properly again, I was starved of celebrity.  

I entered a grey hinterland of tumbleweed and an empty east wind.  I got my info via the television and radio.  Whole movements, trends and shenanigans passing me by.  What was I to do?  Facebook was boring.  Twitter was toxic.  But, Instagram was gloriously glossy and so far removed from the mundanity of life, that I was hooked.  

And so my journey began.  

But, like all love stories, there are always obstacles which threaten to spoil a good thing.  In this case: trolls.  

Recently, I was scrolling and came across a beautiful picture of two women.  Now, my eyes aren’t the best, but the thing that sang to me was the utter joy on their faces.  Closer inspection and a helpful caption told me that they were Julia Roberts and her niece, in e what appeared to be a card game after a family sleepover.  Happy family time.  I loved the positive energy emanating from the image.  However, it wasn’t her sharing it.  The post was by a DJ who said he felt ‘compelled’ to share Julia’s raw honesty.  What is afoot, I thought?

It turned out not everyone is a cheerleader.  I’m not sure why I’m surprised.  After sharing this personal moment she was messaged by many people telling her ‘how terrible I looked’. That ‘I’m not ageing well’ and that she was unrecognisable.

I mean.  Wow!

After some thought about this, I had two trains of thought: one, is that really what people see? And two, what type of person feels they can actively comment on another’s looks?

All I’m going to say is that it says WAY more about them than the beautiful Julia Roberts.  

Ageing, I mean, this is a whole other ramblings in the making.  So, instead I’m going to focus on why people like to deflect their own insecurities and channel them into negativity towards others.  And why they think it’s acceptable to share their toxicity on social media.

Scanning the grid it is incredibly, and sadly, too easy to find awful comments about others.  To read such negativity about young, successful women like Taylor Swift, Miley Cyrus and Selena Gomez – well, it seems they can’t do anything right.  Then there’s the seasoned performers: JLo, SJP and Madonna.  All torn apart with a caustic vitriol of some keyboard warriors.  Hhhmmmm…

What makes them do it?  For want of not giving their words any page space, I think it’s worth noting that it’s symptomatic of poor mental health and insecurity.  In a BBC article it was reported that ‘Dr Mark Griffiths, Professor of Behavioural Addiction at Nottingham Trent University said: “Most people troll others for either revenge, for attention seeking, for boredom, and for personal amusement.”  He then goes in to say that it is a way for people who are unhappy to lash out and get rid of their frustrations.  Does this mean that trolls can be embittered ageing women who can’t afford a decent face cream; young people who can’t get recording deals and a celebrity partner; or, angry individuals who have failed to reach their potential?

In which case, maybe we should be extending sympathy to this group of aggressive typists.  

In the early days I used to find the escapism of instagram a luxury.  Scrolling through a myriad of holiday destinations, celebrity lives and stylish clothes and interiors, I enjoyed it.  And, I still do.  But I guess that looking at such aspirational eye candy can trigger jealousy.  After all, if somebody feels frustrated by their own trappings, trolling must be a way of releasing the pressure.  

What to do?

Personally, well, like a good face filter, I erase what I don’t want to see.  I make my own judgements, fill my feed with hilarity, and ignore the haters.  It’s what I do in life.  My advice always to never walk into a room that cloaks you in negativity.  I avoid these situations like the plague.  And do I feel jealous of the Beckhams jetting around the world and influencers on a permanent holiday? Not really.  They’re just people living their best lives.  They’ve worked hard and luck has gone their way.  Envy? Well who wouldn’t want to spend January on a deserted beach in Thailand?  But does it cause me to write nasty comments  – no! 

All it makes me do is dream…

So when you’re scrolling, try with the empathy.  For who you follow and the followers.  After all, we are all waking through something everybody knows nothing about.   Spread the love and be kind,  

https://www.bbc.co.uk/bitesize/articles/zfmkrj6#

I am Grateful for…

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 January is probably the longest month of the year.  Dark, cold, self-punishing and penniless, we tend to spend it dreaming and wishing time could speed up.  For early signs of spring, a warmer sun and lighter days.  And, as much as we know we shouldn’t rush our time away, we dream of better days.

However, I was determined to do things differently this year.  To focus on what I could change and achieve in this winter hinterland.  So, stubbornly, I’ve dug my heels in and used my creativity to expand my horizons and explore what makes me tick.  

For months now, I’ve been keeping a gratitude journal.  A monthly log of all those glimmers which give me life.  A collection of thought, feelings and moments.  A list of my hopes and dreams.  But, I get busy and sometimes I forget…

But, January has been different.  

Determined to keep strong in the darkness, I set myself targets.  Targets to help me remember and push the status quo of January blues.

I was recently introduced to the Hebrew word ‘davka’, whilst listening to one of my favourite podcasts ‘Stirring it up’ with Andi and Miquita Oliver.  I love listening to them as it’s about two of my favourite things – food, and people.  They have a plethora of interesting guests with a wealth of worldly knowledge.  Their guests often make me stop and think, so when Rob Rinder talked about davka, it made me think about applying it to my own life.  

But what is it?

Davka is about being contrary.  Which, at first would seem an awkward way to make a positive impact on your own life.  However, it’s more than that.  Essentially, it’s about writing your own journey.  Not following the one that’s been preordained.  Pushing boundaries, ripping up the rule book and doing your own thing.  To have davka is brave and exciting.  To have employed davka – you’ve done something against the odds.

I loved the way he talked about holocaust survivors.  The way they survived against the cruel odds that had been dictated to them.  The way that they were so grateful and present as they rebuilt their lives.  Contrary, brave, stubborn, living a life worth living. 

And that got me thinking about adversity and how we can all apply it to our lives.  How it is essentially about kicking back and overcoming prejudice and negativity.  

I am all over davka!

So, where have I used davka so far this year?  Well, to be honest I’ve struggled with the short days, cold and dark.  However, I’ve tried to reframe my thinking and push back against the blues.  Pushed back and ignored the hype around the negative energy January breeds.  I’ve rewritten my days by focusing on all the things I’m grateful for (and let me tell you some days I had to do some really creative thinking).  I’ve purged myself with manifestation goals, to the point of becoming incredibly specific about certain situations (when I go to Australia I’m going to rent a beach house in Manley Bay for six weeks…), and at the end of every positive monologue, I thank the universe for giving me strength, peace and love.

Namaste.

And guess what?  Something wonderful began to happen.  By being contrary and refusing to bow down to the grey January fog, I’ve kicked back and rewritten my days.  I’ve found that being grateful has allowed me to rewrite my path and this makes me feel good about my future.  

And, with February peeking at us from around the corner, and my first glimpse of snowdrops this weekend, I’m gearing up for what comes next.  I’ll continue to be grateful; continue to focus on my goals; I’ll continue to thank the world I live in.  I’m going to apply davka to my big journey and achieve the impossible…

Well, I can at least try.  As my reader, should you.  

Namaste 🙏 

I Know I’m No Good

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Once upon a time, a young woman was sitting in a meeting room.  It was her first week in the job.  The discussion around her was completely unrelated to anything she had done before.  She felt out of her depth.  She felt overwhelmed.  She was ready to bolt. Luckily, she didn’t.  

That was then.  This is now.  

Now – she runs the meetings.  

But, she still thinks she’s not good enough; full of self-doubt.  Full of anxiety.  Full of paranoia.

A familiar story?

The other day a woman was talking about all the reasons she might get the sack.  Mistakes she’s made; times she felt she could have been better; times she felt like she hadn’t measured up.  At no time did she realise and say ‘I’m good at my job because I care’. At no time did she think ‘it’s because I care that I’m still in this job’

Instead, she measured herself against self destroying goals and expectations.  

Nobody had told her she wasn’t any good.  Nobody had told her she sucked.

It was her.  All on her.

How many of you can relate?

Imposter syndrome plagues , according to research, 82% of the population.  And although my two stories focus on women, men are just as likely to suffer with this self-sabotaging issue.  

Why do we do it to ourselves?  

The sad thing is that this 82% contains a high percentage of people who have ultimately worked extremely hard to gain success, only to decide that they don’t deserve it.  Instead, they spend hours punishing themselves for all their failings.  Framing their perceptions through a negative lens and second  guessing what others think.  When, in fact, most people don’t give it a second thought.  And those that do?  Well, I think it’s a case of asking ‘do they matter?’

Ultimately, it’s about being kinder and stepping outside of ourselves.  People are flailing and we live in a naturally judgmental world.  And as difficult as it is, we need to be kinder to ourselves so we can be kinder to others.  

How do we spot it?  

In a recent article I read by Gina Balarin, entitled ‘Imposter Syndrome: The Struggle Is Real – But You Can Beat It?’  She quotes Clare Josa who says ‘There are four P indicators of imposter syndrome – perfectionism, paralysis, people-pleasing, and procrastination.’

Instantly, I could relate to all of the above.  I could also relate it to many of the people within my life.  The micro-managers who obsess over every detail; people who become unable to articulate themselves under pressure; those who go above and beyond tying themselves up in knots to please others; those who hide and avoid the big picture.  

All of the above have been me at one time or another.  I’d argue that you can also relate.  However, none of the above mean we are failing, they are what make us human.  

Historically, there has been a stigma attached to showing weakness at work.  We were trained to be resilient, loyal and selfless.  To be successful meant sacrifice with blood sweat and tears (think sackcloth and ashes).  Although, most of us are realising that this kind of thinking is a legacy of the past.  For years it was drilled into us to: work, work, work.  That to think about yourself was selfish and showed weakness.  

Self care?  We should all be doing it in spades.  

It’s now 2024 and we’ve seen and been through a global pandemic which changed our world.  We began to evaluate and value our lives; looking at what living meant through a different perspective.  People changed, people grew.  We’ve also lived through the BeKind movement where we learned to articulate ‘it’s okay to not be okay.’  And finally, there’s never been a more visible time for movement for equality within minorities within our society.  So why do we keep punishing ourselves?

Think back to those two women.  Think back to those four Ps.  Think how you could spot the signs: feel the self doubt oozing from their every pore and think about what you could do.  How could you be kind?  How could have I been kind?

Me?  I’m trying.  By actively thinking about it, I feel I might be able to help at least one person.  To hold their hand; thank them; give them a smile.  Not forced or false, just softening the edges of their day.  

82% of people are going through something.  Surely, if we all work together we can smash the sadness.  

For more information here is one of the articles I read:  

Imposter Syndrome: The Struggle Is Real – But You Can Beat It

Imposter Syndrome: The Struggle Is Real – But You Can Beat It

january Sankalpa

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It’s 2024!  A new slate.  A fresh start…many of you will be thinking:  New year, new me!

Good.

But I’m sorry, it’s not for me. Unless somebody wants to give me a three book deal, a few thousand and a trip to one of those colonic shite farms in Thailand, I can’t see The New Me happening anytime soon.  But that’s not what we mean is it?  What we really mean is that we are to list all our guilty pleasures and vow to stop them for the foreseeable.  The pressure!  

It’s not that I’m anti-change, it’s just I’m not all about making millions of promises to jump through hoops I don’t fit.  In fact, I’m not really a hoop jumper; more of a hoop swirler, thrower and general circus freak.

It’s not like I haven’t made a list.  I always do.  I used to call them resolutions.  The 2024 me calls them intentions.  Nestled next to my monthly gratitude journal, they focus on all the things that make me feel better about myself.  Positive paths I like to lead, rather than saying ‘I’m going to abstain from ANYTHING EVER AGAIN’ and that ‘I’m going to GIVE UP THE WHOLE LOT OF ANYTHING’

Not happening.

Life is too short not to have a glass of wine with dinner (it’s one glass).  I enjoy exercising but I’m never going to say ‘I’m going to work out one hour every day seven days a week’ – I mean, let’s be realistic, I’m a busy woman.  Instead, I promise myself to alter my routines for more variety.  And as for making myself miserable by owning eating a restricted diet.  Well, like I said: life is too short.

However, it’s difficult not to contemplate changing when we are currently surrounded by a media’s desire to feed us a stream of ways to refrain our thinking.  Take ‘You Are What You Earn.  The Twin Experiment’. Netflix’s latest ‘factual’ show which leads us through a thinly disguised narrative of why meat and dairy is evil and toxic, whereas, veganism is the epitome of guilt free healthy living.  A show, which was both fascinating and horrifying in equal measures. Like a film from the Saw franchise, you felt yourself uncomfortable  watching, yet compelled to watch the gruesome footage of animals living in their own shite and evidence of badly treated chickens.  

It was awful.  So awful I had to step away and think about the actual message they were trying to give:  Go vegan, lose weight, live longer and save the world!

Fabulous.  Only…

It’s never that simple is it?  Try as we might, our social consciences lead us to eat better and to consider our carbon footprint.  We think about prevention rather than cure and spend money and time trying to adopt a more holistic approach to living a better life.  But life, is that, it is to be led.  Sometimes, try as I might, I can’t live guilt free: a bit of chocolate because I need something sweet (it’s a square); a cheese sandwich because that’s all I have in (starve myself, you say?); an overflowing bin because what I’ve had to buy has ridiculous packaging (I’m thinking Christmas here!); a glass of wine on a weekend (and?); roast beef on a Sunday (organic and fresh from the farm); to name a few…

It’s all about the guilt.  It’s all why I sit here feeling terrible because I ate more cheese than was good for me yesterday and can physically feel my thighs stretching from its after effects.  

 But…eating cheese was not in my rider anyway.  

My list of intentions?  They were purposeful and positive.  Aspirational, setting my Sankalpa for how I want to think and feel.  Less of the loss of the guilty pleasures, the sackcloth and ashes routine, and more of the grounded me who takes pleasure from living a life that makes me feel happy and fulfilled (yes, I know I sound quite sickening anx Paltrow like).  I want to enjoy my life.  To wring the hell out of it: inhale every scent, see the wonderful, and absorb the beauty of what is around me.  I am desperate to experience as much as Ii can, for as long as I can.  

I didn’t always feel this way.  

I’ve decided that as my vision gets smaller, my world is getting bigger.  I spent too long feeling unworthy and sacrificial and I knew that needed to change.  I realised that it’s all about the way I frame my thinking.  I can’t change my sight-loss and I can’t change its repercussions, but I can decide how I face it.  

It’s not about what we give up, it’s about how we think about it.  

So, although I ate that cheese (my doctor will be cross), I’m not going to focus on that.  Instead, I’m going to focus on the 15000 steps I walked yesterday; the healthy dinner I cooked; the time I enjoyed with the ones o love (RosieDog featured heavily here) and most of all I’m going to keep being grateful for tbd imperfect life I lead.  

A Winter Solstice

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I always look forward to winter solstice.  It marks the beginning of the encroaching darkness receding.  It means that lighter and longer days are on the horizon.  And although it heralds the beginning of winter, it is the precursor for the beginnings of new life.  My yoga teacher recently told me that it’s about being reborn.  that instead of the reflective aspect to our practice, that we are now moving into an active time.  

Possibilities are on the horizon…

But, as I begin to focus on my intentions for 2024, there is a pesky blot on the beautiful, but stark winter landscape:

Hello anxiety, my old friend.  My nemesis; my unwanted companion; my hated dread.

For years it was my constant.  Always there, buzzing around dull and desperately in the background.  The constant fear and butterflies omnipresent.  

You see, there was a time I thought I’d cracked it.  I did, for want of a better phrase ‘done a great deal of work on myself’.  Self-help; psychoanalyst; mentoring; the drugs and such like.  I embraced it all.

Well, you do when you’re rock bottom don’t you?

Anyway, I did it all.  I wanted out of The Fear.  I wanted to escape its darkness and find light.  And, because I learned and realised that I was worth it and that I owed it to myself, rather than feeling selfish for the self-indulgence, I did the work.  And in doing so, I had found some semblance of peace.  But, like everything we don’t want reminding of, it has a way of sneaking up on you (the psychologist might have plenty to say about this but I have my own view).

As I have previously mentioned and you might have inferred from previous blogs – I am A LOT.  High maintenance if you will.  What with that annoying matter of losing my sight and having a terrible immune system, well, I come with lots of unwanted issues and a disclaimer on my bio.  Each day is a carefully orchestrated affair.  I’m terrible with surprises and live in perfect order.  I mean, don’t ever move anything or put things in the wrong place.  You see, do, and I’ll hunt you down and kill you.  This means I spend a great deal of my life within a small circle of trusted people and strict guidelines for how I live.  All part of the work I did.  The therapy.  

It means I function.  It means I live a life richer than I did.  

‘But the anxiety?’ You ask ‘Why now?’

Well, let me tell you.  

A while back I decided I needed to be braver.  Man up, as I say.  I needed to stop flopping about like a red cracker fish and develop a backbone.  You see, although I’d spent eons on all the positives and busting The Fear, I’d failed to develop balls.  I felt that minimising my life would suffice – like if I shut my eyes and curl into a ball nobody would be able to see me.

2023 has been the year of the brave.

Being brave has been both exhilarating and petrifying in equal measure.  I’ve been to places and had experiences I don’t think I’d ever have dared to 18 months ago.  I’ve navigated strange places and stepped out into a crazy busy world.  And, I’ve survived.  

But all with support and love.

The next phase has been independence.  And that’s been scary.  I’ve been places, faced challenges and agreed to things in the past month that I would have scoffed at 6 months ago.  Going places without a safety net?  Fighting the ever dread of being judged because I have a disability.  The embarrassment of me being me vibrating in the periphery.  No wonder my senses have been on red alert.  

Does being brave mean I lean into the anxiety?  

I think it does.  I think that by leaning in I’m embracing it.  Facing up to it.  By facing up to it I’m admitting to myself that it’s okay to not feel okay.  Because, I know that the moment will pass.  

So, with the passing of Winter Solstice and the beginning of a new year, the page is blank for me to write it.  A new era.  An even braver new world.  A flawed world which is fabulously imperfect like me.  And whilst January might feel empty and dark after all the hoopla of Christmas; the days will become longer; the spring will become nearer; our lives will become richer for striving to be brand new, our best selves, brave.  

Namaste 🙏 

I Come With A Disclosure

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Before I begin, it is worth noting that I have whole days, sometimes simultaneously, where I just float through the motions.  Live on autopilot and lack acknowledgement of my RP.  And when I say ‘lack acknowledgement’ it’s not that I’m denial, more that I’m just ‘getting on with it’.  Which, you might know – those of you who observe the car crash that I am (because that’s how I often feel, that I’m watched like a car crash) – I do it in my own way.  

At times, these ways make me self conscious.  Other times, I do it unknowingly; a series of unconscious mechanisms that I have just developed through time.  It’s  during these times I don’t care, so used I am to being adaptable.  However, whatever and whenever…whether I consciously or unconsciously do any of these things, it leads me into periods of extreme exhaustion, paranoia and worry.  And I can guess, whatever somebody thinks about my capabilities. I’m thinking I’m ten times worse!

This said, I do realise I have to pack away any negativity and embrace my inner strength and tenacity.  The simple fact that I manage to well, manage, a daily life, is something more than some can do.  I’m lucky, I’m still functioning and it’s down to the way I’ve learnt to deal with ‘the daily struggle that is sight loss’.  Below, is a list of things I actively encounter daily and, this is the important bit fact fans, how I try to overcome them.  So, strap yourself in and enjoy learning about my distorted world.  

NB this is about things I have learnt to manage.  Therefore, there’s no mention of yellow wet floor signs.  Until they are fitted with audio sensors, they’ll always be my nemesis.

I Am Not A Robot

Being able to shop and work online enables a partially sighted person to live a broader life.  We can shop on our own.  We don’t have to worry about getting to and from the shops.  Plus, we can adapt many apps and sites (more on that later) meaning we can navigate our way through the computer highway, like a seasoned shopper in a mall.  However, the process of setting up accounts, passwords and particularly proving I’m human, can be headache inducing and stressful.  Finding ‘all the traffic lights’ or ‘stairways’, wouldn’t be possible for me in the real world (my blind spots would mean I could miss one) but faced with tony squares and grainy images, I feel like I’ve hit a brick wall.  The optimistic person in me means I try and fail, only to produce another grid with smaller squares.  Frustrating…so how do I cope? In these cases, I ask one of my trusty aides.  

People I know

People are always an issue.  Whether they hang about in my blind spots, or expect me to recognise them, what they need to understand is that it’s not them it’s me!  However, here’s some pointers.  Tell me you’re there.  Then I find you and I plot it into my spacial awareness (maybe I am a robot).  And secondly, tell me who you are.  Faces aren’t always an issue, but distance and tiredness sometimes means I need a little help.  Just like when you feel a bit poorly, or are having a bad day, checking in always helps.

People I Don’t Know

These are the ones that can be forgiven for the car crash face.  They don’t know me and have no idea that I manage to function on a daily basis.  Instead, they can be forgiven for thinking I’m rude, stupid, drunk and ignorant.  They say first impressions count don’t they? My chaotic entry certainly leaves on impression.  And for years I’d silently berate and punish myself in an embarrassed hole.  Metaphorically turning myself into a tiny ball.  Now?  Well, they get what they see.  I’m kind, (too) talkative (I’m known for TMI) and friendly.  Pretty soon I’ve either bulldozed them into interacting with me, or sent them running for the hills.  By then it’s got nothing to do with my blindness, it’s to do with my marmite personality.

The Dark

Winter, nighttime, nights out and dimly lit restaurants can all be a challenge.  My sight struggles to adjust to night vision and as a consequence, I am immersed into another world.  This, I think, is my most challenging hurdle.  To have – what is effectively- my arms and legs cut off, leaves me feeling trapped.  It can be isolating and leave me feeling vulnerable.  However, years of adjustment have meant that I’ve learnt to find ways to manage.  A well trained guide (Moth is great(, or a mapped out area.  But the best thing to happen to me is the iPhone – a camera, a torch and google all in one?  It’s like the Kinder Egg of the electronic world…

Black Text on White

…and speaking of my Kinder Egg of a phone, thank goodness for ‘Smart Invert’.  What the Jesus did I go before I could convert everything?  In fact, once I’d discovered the accessibility of an iPhone, I learnt about the ‘Seeing AI’ app, which, I’d argue, is not just for blind people.  Do you wear glasses? Fed up with eye strain?  Feel tired?  Dyslexic?  Well, Seeing AI, is bloody brilliant.  It reads labels, documents and even handwriting – to name a few of its functions.  On a bad day, I scan in whatever I want reading and it reads it back to me.  Genius!  It’s the thing I once dreamt about and I use it every day.

Colours 

Seeing AI can read colours to me, but that doesn’t help when shades of grey, green and brown merge into one.  Walking down the street can be a challenge at times.  Lampposts have to be mapped.  As do kerbs and pathways…For about four years now I have struggled with some colour palettes.  This was once a nightmare to me.  When I first learnt I would one day be blind, i panicked that I would end up wearing mismatched clothes of varying colours and patterns.  That my ‘hidden disability’ would be for all to see when I paraded down the high street in the lime green leopard print shirt and brown floral trousers.  Thankfully, between my phone and my crew, I am usually well dressed and bruises are at a minimum.  Any mistakes – fashion or injury wise, are entirely my own.

A Changing Landscape 

I map familiar places.  I make sure I know where things are and how to avoid hazards.  It’s not foolproof but it helps my day go smoother.  Therefore, imagine how hard it is for me when people decide to change things!  Whether it’s moving the bin, not putting away things (I’m a clean freak), or living in chaos, I just can’t cope.  Blindness, and finding ways to live a normal life’ has made me organised.  But the fact I can’t control everything I map is difficult.  

Christmas Merchandising

Well…it’s the worst.  I mean, i know they want to maximise sales but I don’t care! There are only three shops I really go in and feel comfortable in.  They think their remerchandising  is so clever.  But don’t they realise why the blind girl is lapping their store?  Luckily, most staff are very helpful (that’s why I shop there and not the busy cattle markets even though they are supposedly cheaper).  

Although, note to M&S: moving my gluten free quiche and falafel is not a clever move even if it means you can put more turkey gravy and smoked salmon out.  

Travel

But no matter how much i plot, plan and adapt, travel is probably the most daunting thing I attempt.  Trains, planes and automobiles – I’m at their mercy.  Always on other’s time and having to rely on others.  For somebody so proud and independent, I find it difficult to accept help.  Recently, however, I bit the bullet and had disabled access in Manchester Airport.  When I arrived I went to an accessibility point and they gave me a lanyard.  It meant t was given access to the ‘Assisted Travel’ lane and was fast tracked into departures.  A God send when crowded airports and the drama of all the red-tape that comes with it, can send somebody like me into a spin – no matter how much of a seasoned traveller I may be.  

Above is only a snapshot of things I have to plan and adapt for.  My head sometimes aches with it all and like I said previously, it can make me very tired.  I am a mum of three; I have a gorgeous doggie who takes up at least an hour of my daily life; I work full-time in a very demanding job; I write, read and find time to socialise…all of which need navigating.  But I am damned if I’m going to give up.  I’m alive and as long as I’m breathing I’ll fight for living the best life I can.  

My disclaimer:  I might get grumpy, tired and sometimes cross, but I’m not dead yet and will never give up.  Like I always say ‘let’s be kind’ and the world will spin a bit more happily.

Seeing AI: https://www.microsoft.com/en-us/ai/seeing-ai

Manchester Airport Assisted Travel details: https://www.manchesterairport.co.uk/help/special-assistance/

Sight-loss is my Superpower

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When you gradually lose your sight, you literally don’t see it coming.  Like the way dusk creeps around day; wrapping itself around stealthily; filling the corners, before infiltrating the periphery; total darkness.  It was light once and now dark.  And although my central vision is okay, it might be that one day it isn’t.  

Only you know how blind you are.  Nobody knows and truly understands what you can see and by extension, what you can do.  This means that the words ‘partially sighted’, ‘severely sighted’ and ‘blind’ mean a lot of people second guess you and write you off.

This is both soul destroying and difficult to navigate, in an already blurred world!  But, as you lose your sight, your confidence ebbs away and it leaves you wondering if people are right?  Should you let them right you off?

Not bloody likely!

The blind community, as well as most people living with disability and hidden illnesses, are bright and resilient.  We work really to hard to continue to live the best lives possible. We don’t think about our limitations, but rather find ways to broaden our horizons (no mean feat for somebody with peripheral vision!).  We want to experience life, be successful, and look good too!  But, behind that determination and vigour we are faced with ignorance within the world.  A world where people want to write you off and make you feel like a nuisance or burden.  Which, on a wonky day, you feel you could quite easily subscribe to and quietly crawl away from your fight…

Luckily, the last few years of my journey have taught me many things.  They’ve taught me that I’m a good person.  That I’m resilient and worth more than I ever believed.  I’ve grown in voice to articulate my ‘issues’ without feeling ashamed.  

Sadly, I didn’t feel that way five years ago.  I was dying inside and allowed negativity to breed in and around me.  But, like I said, ‘luckily…’

What has made the difference?

  1. I’m learning that it’s okay to have a voice.  To say ‘no’ and ‘wait up!’ and of course ‘I need this adapting’.  I’ve also learnt that having a voice can make others uncomfortable and challenges their preconceptions – how great is that?  Showing the world the blind community kick-ass.  
  2. I work incredibly hard to plan everything I do.  I can’t manage surprises very well (unless they are of the ‘im whisking you away to New York variety, which although would be tricky – I’d many some how!), so I write lists (on my inverted screen on my phone), plan each day, week, month to make sure my stress levels are kept low and my life calm.  In fact, my logistics are so on point, I think I could run Ukraine’s military defence.
  3. I’m kind to myself.  I used to be such a martyr and a worrier.  And although I’ve ditched the former, the latter creeps in during times of tiredness and stress.  However, being kind means I look after my mind and body because I’m worth it.  To say that to myself a few years ago would have had me running for the hills.  I’d see it as selfish.  But now?  I know that by looking after me, my family, friends, colleagues and students, get a better deal.  
  4. It’s okay to make mistakes.  Everybody struggles to say ‘well done’ and ‘you’re doing great’, but they are happy to say ‘you’ve made a mistake’. Rude feckers.  I think it’s because it makes others feel better about themselves – especially those with an ego or competitive gene.  However, my mistakes are because I’ve missed something, not because I’m stupid.  I felt stupid for a long time, but to work full time in a pressurised job, with low vision means my brains not dead yet.  
  5. Finally, I surround myself with good people.  They bring sunshine into your life and warmth to your soul.  Everything is possible when your wrapped in love.  And I am truly humbled and grateful for everyone of you.  

For many years, Living with sight-loss made me live in a perpetual state of panic.  I allowed others to make me feel shame and inadequate.  My determination not to let it define me meant that I ran from it until it crept up and got worse without me knowing.  

Four years ago, I was having a breakdown and had no idea why? I was clueless.  I honestly never realised how living constantly on the edge had tipped me over it!  I had no idea my sight had got so bad – seriously!  But now, in my calmer and freer world, I see that woman and my heart feels heavy for her.  She’d have never thought to ask for help, to take time for herself – see didn’t feel she was worth it.  

Yes, I still have hurdles to overcome.  I have many issues and situations to navigate, but I’m not afraid of the dark any more.  Being blind is my superpower and there’s a lot more to come.