Tag Archives: retinitis Pigmentosa

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.