It’s time…

This blog as been the hole-in-the-wall that allowed you to peak through into what was my human story. I have unlocked my secret garden of memories and experiences for you to wander through at your leisure.

My writing, I hope, is experiential and visual; it is my way of showing you what I saw on this incredible journey of sight rebirth, and how that affected me.

It still affects me.

Now it’s time to get into the science of the matter. In fact, we’re really talking neuroscience here, and as for the matter; well that will be your brain. The incredible science within us all, is what is, and always has been, the raison d’etre for this blog.

So, let me introduce you to the “Talking to Lampposts” exhibition.

This will be the physical manifestation of these words…this story. It is the real, tangible place you will be able to visit to touch what I touched, and feel what I felt…and what’s more we’ll tell you what was going on inside, because that’s where the real story lies. 

Welcome to the next stage…

 

A sidelong glance

I’m not sure if I had any idea of the world around me, not really; and I am talking literally here. I have been missing out on a secret garden, a whole series of scenes and stories. Amazingly this fringe world has been playing out in my peripheral vision without me ever knowing it.

I only know this because today I was introduced to my peripheral vision; the side-view that sits just beyond what is comfortable. It has opened up a Pandora’s box for me, this new slice of life has tickled my brain, and I can’t believe I have been overlooking it all this time.

If I was to explain in a sentence what vision therapy is; and let’s face it when we pass each other in the street you want me to elucidate what I’ve been up to in a nutshell, not a lengthy tome. I can now say, in the interest of brevity and succinctness that this week, vision therapy has not been about what I can see all day every day, but more about what I don’t see, and how I feel about that…

Try it for yourself.

Wallace and Grommets

My new lower prescription specs arrived in the post and got their first outing at Croydon University hospital. The intention is for my eyes to level out a little and to reduce the dominance of my right eye. It is also to restrict my constant habit of trying to focus all the time.

My specs firmly planted on my nose we set off; and for once a hospital visit was not all about me.

Our daughter has suffered from a loss of hearing over the last year or so and after months of suppressed comedy moments arising from her mishearing words, it was decided that grommmets were the answer.

With my new specs the world still looks faded like an old photograph, but now I cannot easily read the overhead signs, which up until today had leapt out of the haze with their crisp black and white lines. There is a more uniform fuzziness covering my visual field now. I can actually see less.

With my daughter safely deposited on her ward bed left curled around her Daddy like a cat replete in the knowledge she is centre of attention, I headed to the café with her bored little brother.

The little one found this particular outing to be highly engaging. Swinging his arms and with his jerky puppet walk he casually bumped into patients and visitors as he zigzagged down the corridor ahead of me. I noticed how his sense of special awareness is almost nonexistent, yet his smile is constant.

His attention flitted from one subject to another provoking a series of pertinent observations to spill out of his mouth before I had chance to intervene. Given his eye line is about waist height now there is an array of material for a 4 year old to comment on.

“She’s going to die soon Mummy.” He casually and loudly informed me over his shoulder, his finger pointing at an elderly lady in a gown. My horror was so sudden I couldn’t even mutter an apology to the woman, I just managed to usher him down the corridor only to then nearly bump headlong into a heavily pregnant woman. Unsure of what her prognosis might be, I violently wheeled us both down a side corridor towards the café, and out of harms way. Of course my sense of direction in my new glasses is worse than normal, even though I am familiar with the hospital layout. The fog that floats over my vision obliterates so much detail…

As I stood looking flummoxed the little one gently tugged my hand and pointed to another grey-filmed corridor. “Mummy, your eyes aren’t working today, the café’s down there!”

As I looked down at him I realised with a sigh that he was quite right.

15 minutes of gain…

I have been given 15 minutes in which to do my thinking.

I now have to condense and abridge my musings into this restricted time slot. My eye health is part of my vision therapy programme, and like the smoker trying to quit, I too have to curtail my habit.

I also have to spend time without my glasses on. This is something I had already been doing; but in the recent past it had been in order to give myself a break from my sight. This now seems an anomaly, and indeed I find myself questioning my rationale and behaviour and wonder if the answers were there all the time; tucked away behind my lenses.

My blurred, hazy vision without myopic correction is stable and slow, it doesn’t fizz and jig; nor does it aggravate me. This fuzzy cotton wool sight is calming, and temporarily brightens my world. I had noticed this incongruity and often took off my glasses to simply tilt my head back and stare at the sky. The experience of absorbing more luminosity, more light was somehow organic and biological.

I now realise I felt that way because in fact, I got more light. That might seem incredibly obvious, but like many things in front of our face, we don’t always see the obvious. The fact is that when I remove my lenses my eyes cannot strain and fight to use their central focusing, which in turn allows more light to flood my retina. Ergo I see more light.

Step one; and it seems so simple.

Times up…

Luck

What is luck? No, really – what is luck?

I can’t help but feel it is two sides of a rusty old coin, but it’s more that that of course; it’s a force. It’s something that takes you over and has power over you. It’s uncontrollable.

It’s a bad thing for us control freaks; it might even be our Archenemy.

It depends on your spiritual angle of course, your opinion of the world. It’s an interpretation of how you see your life fitting in with others, how central you are. It illustrates where your boundaries lie, and exposes your value system. Sharing your definition of bad luck is tantamount to holding up your newly washed undies up to the light for inspection.

My interpretation of luck might evoke a violent reaction in you. It’s just chance or coincidence isn’t it? It’s something that shapes you whether you like it or not; but it affects you, changes you.

Sometimes we talk about ourselves being in the right place at the right time, but the two polar opposites of chance are defined and calibrated by how you see life; it’s what you want to pull out of it, or perhaps its more about what you don’t want to pull out.

We all have different expectations, and desire radically diverse things from this existence we’re given. A poet needs his imagination; an artist might need his eyes, and a composer his ears. But what value do they put on the rest of their senses? What would be their individual definition of bad luck?

What could they live without? Let’s face it; bad luck is normally about losing something…

I hear about people’s travesties all the time, illnesses and bad fortunes linger and drone around my head for longer than they might have before. They attach themselves to me, like a burr. I touch it and feel the prickles, the sharp spikes of their fear. I know fear so it’s easy to pick up someone else’s. It’s a perverse comfort to know you are not alone in your own bad luck.

I find myself assessing their fate; their personal predicament and I ask myself; was it as bad as mine? Did it grip them and change their life? Are they still affected by it?

It’s narcissistic and brutal, this measuring and comparison of suffering, but I guess if I do it, then someone else out there does it too.

The point is though; it is a useless exercise. My notion of bad luck will always be poles apart from yours, as yours is to me.

Luck is, if nothing else, distinct, personal and unavoidable….and I remind myself, it can sometimes even be good.

59 seconds…

The features of modern technology recently allowed me to eavesdrop a valuable and insightful conversation between my little one, and his four year old cousin as they walked hand in hand through a National Trust forest.

They pragmatically and succinctly discussed parental mortality; and still had time for an enlightening chat about dinosaurs – in all of 59 seconds

I’d be sad if my mama died, I’d be, in fact I’d just cry if my mummy died, and I wouldn’t stop until my mummy…”

“Our mums will die. Sometime. But only old ladies died.”

“Yes, really, really old ladies. Old ladies that are…”

“Is that your jumper?”

Yes, it’s a stegosaurus, actually it’s a gigantosaurus.”

“Oh..”

“Gigantosauruses are a meat-eating dinosaur that are really huge. They have to bend down to eat !”

“There’s a gate over there! Let’s run!”

I wonder if there’s a leaf to be extracted from their delightfully naive storybook…

Pediculus…

It’s not quite a full ‘banshee’ morning but it’s not far off. My voice has been raised for at least the last 20 minutes as my unresponsive children are systematically ignoring me. Shouting is having little impact; but the reflex is too strong to resist nevertheless.

The little one whines “Can I have the TV on?” which I choose to ignore. I am distracted as my daughter is absently scratching again; in irritation I flick her hand away from her scalp, and reach for her comb and hair bobbles. As I tug her head backwards, accompanied by the inevitable squawks, I notice something.

This has been a deep worry for me over the last year; would I notice if something was wrong with my children? What if I couldn’t see it? Could I miss some crucial clue? My instinct is on high alert; I just know something is not quite right.

As I slowly comb through her fine pale hair something catches my attention. Angling the comb a little and causing a yelp in the process, I scrape up a small black speck. I slowly transfer the comb closer to my face only to see the black spec….move.

In amused horror I realise my instinct was right, but my bemusement is interrupted again;

“Can I have the TV on?”

“No!” I hear myself yell again, “you can’t; your sister has nits!”

Thankfully my children are curious creatures, and indeed small creatures living in my daughter’s hair are suitably fascinating and exciting; that is until I mention the fact that we need to shampoo their hair. Now.

Shampoo is my children’s archenemy; so this is not good news.

“Can I have the TV on?” follows me about as I muster the big one into the shower room. She succumbs to the showering and rubbing in of repellent Lyclear in good humour; wrinkling up her nose in mock distaste.

The little one is mischievous and instinctively winds her up, unaware of his own fate. I side step furtively in his direction but he catches the look in my eye, and before “Can I have the TV on?” falls out of his mouth again he is running down the hallway shrieking. I manage to rugby tackle him at the bottom of the stairs and the next 7 minutes are wet, noisy and highly satisfying.

As my weary husband ambles through the door that evening I greet him with a fine toothcomb and the bottle of Lyclear; a salacious smile on my face.

Of course I can see nits.

 

White eyed

I recall a sunny day in 1979, so bright and luminous it literally hurt my eyes. We’d ventured out as a family to a local farm for what looked like an impromptu summer fair. Several fathers were lobbing wellies as far as their soft stomachs would allow them, flexing their arms warily afterwards as they stepped to the back of the line.

I was left to my own devices as I ambled through the field, avoiding the numerous cowpats. I was looking down, not out of necessity or from any childish shyness, but simply because I could not look up. The light was so startling and violent my eyes were watering with the effort of keeping them open. My hand offered a feeble shade and so, blinking through my tears I stumbled towards an old faded parasol in the hope of refuge. As I sat down on one of the white plastic chairs my discomfort was cruelly intensified. Was there no escape from this white searing light reflecting all around me, burning the insides of my eyes?

My mother was impatient with me, and attempted to pull my hands away from my face, but the pain was too much to bear. Exasperated she left me with my hands clamped over my wet eyes, breathing in the cool darkness.

That was the day we should have all realised quite how light sensitive I am; or…I was.

Sunglasses have always played an imperative role in my life, an accessory that was more of a fixture, than an ornament. I never bothered with the one expensive pair of large A-list glasses, but instead focused on quantity. Sunglasses could be found in my car, stuffed into the creases of most bags (even in winter), and at least four pairs co-habited with all the hats and scarves by our front door. I wore sunglasses even on grey days.

The inevitable side effect of this was of course the tell-tale white line that caressed the bridge of my nose every summer. Even the canniest make-up couldn’t fully obliterate my glaring incandescent white tan line…

Now I don’t need sunglasses at all; not even on the sunniest, brightest, most vibrant of days. I can’t afford to lose even a slither of light; so squinting is not something I do anymore.

Of course the upside to this is that I no longer suffer that irascible white line that slowly develops between my eyes from June onwards.

I no longer look like my kids have had a go with white crayons after forgetting to top up my sunblock.

The irony of course is that I now don’t have enough colour vision to appreciate my new flawless grown-up complexion.

The comedic white tan line may be no more; but it has come at a price.

 

 

 

The in-patients

The taxi curves around a walled courtyard and I hear the tyres crunch on expensive gravel beneath us. A modern glass frontage titivates a nineteenth century house; typical of many boutique hotels I’ve seen before.

Mum and I attempt to extract ourselves from the back of the cab in a ladylike manner; but fail miserably. The height of the chassis is such that it means I end up hobbling on my knees doing an inappropriate dwarf impression whilst dragging our cases behind me; only to then explode out of the door in an untidy heap. The gravel is decidedly uncomfortable.

It’s not the most salubrious of starts.

We are sniggering children as we finally flounce backwards onto our co-joined single beds, piled high with unnecessary pillows and cushions. After we have inspected all of the cupboards in the room, and of course tried on the fluffy towelling robes over our clothes (why do people always do that?) we venture out into the sun, and across to the lavish spa building.

I am never particularly happy in these environments; I feel that everyone I pass is entirely aware of the protocols; except me. Do you wear the dressing gown and risk looking like a mental health in-patient, or do you rebel and stick to normal clothes?

Shoulders pushed back and chins out, we silently rebel.

That evening, the main hotel dining room provides a logistical nightmare for me. Dimly lit chandeliers combined with dark oak panelling leave me very little available light to play with. My eyes swiftly scan the room, not to assess my fellow guests (as they might be hoping), but to work out the room’s edges, where walls end, the gaps between the tables and the foulest of menaces – the hidden step. This duplicitous hazard is one of my worst foes, lurking in dark secret places, ready to make my teeth bite violently and my knees buckle should I miss a sneaky step down. Going up is an entirely different kind of jeopardy; here I risk sprawling unceremoniously underneath a table canopy, or even worse; on top of one. I can hear the imaginary china crashing to the ground as I gingerly follow the maître d’.

Even in these trying circumstances I lead the way. It’s how it has always been with Mum and I. Aside from her being vertically challenged and therefore slower paced, I have always donned my safari hat and played the trailblazer. These days though, it’s my own boundaries I am challenging, not hers.

At our crisp white clothed table, we survey the room, tummies growling. We have worked out that it is the extortionately priced drinks that achieve this hotel’s margins. Although idyllically nestled in the Cheshire countryside, this is not Mayfair, and even a Michelin star restaurant would blush at the numbers printed on the menu in front of us. It’s as if omitting the pound sign somehow softens the blow.

I have already spluttered my disapproval at the cost of a bottle of fizzy water earlier in the day, so my Northern frugality is tightly zipped behind my lips tonight. That is, until dinner arrived. At least I think my dinner arrived, but the portion was so small I did a double take at the plate. My immediate response was to hunt out the bread lady to wield her tongs again. I was acutely aware that my own children left at home with their father were probably consuming larger meals that I was.

Of course a considerable quantity of rose and a lack of sustenance soon led to much tittering and childish behaviour on my part. When offered my choice of a dessert some time later, I couldn’t resist the inappropriate reply of; “I’ll have the biggest one.”

Mr Smiley

The evening entertainment is a bawdy affair. Swarms of sweaty children weave in and out of chairs and tables whilst bored parents sit torpidly nursing glasses of tart local wine.

Nobody knows about me: Mrs NMO.

We have only engaged with a few families, smiling absently when our children have crossed paths briefly, never divulging more than which airport we flew out of. In the dim light human puppet shadows streak across the walls, bulging shapes emphasized by the fluorescent spotlights. Diabetes and heart disease slide awkwardly into the chairs next to us, flesh cascading over the arm rests. The movement causes the residue of cigarettes, after shave and stale beer to meander our way; my nose twitches its disapproval.

Loud music snaps my head back up and I find myself sniggering quietly into my warm glass. A moment of pure joy is about to play out in front of me….again.

I can only assume it is one of the male staff members that dons the shabby dog suit every evening at 8pm. Playing the pied piper he collects frenzied small people and leads a fevered trail around the room. Swaggering in an animal suit is challenging but I give him credit for trying to maintain some cool.

My son is at the other side of the dated ballroom but spots Mr Smiley as he snakes back around. Grinning inanely he lowers his blonde head ready to charge. It makes me smile how for the last 6 nights Mr Smiley has not seen my son coming; and when the moment of impact arrives he still never manages to deflect the highly accurate right hook to his groin.

I can only imagine the grimace and muttered Arabic oaths inside that furry dog head.