Shake hands…

So, it was rude of me to leave you dangling, so let me introduce you to Talking to Lampposts properly.

What is it? Well, I keep calling it an exhibition; but it is so much more than that; it’s an experience, an affecting encounter. You can’t just breeze through this show without a commitment, a will to let yourself be absorbed completely into the story of Patient H69.

This is a voyage into neuroscience, and we’ll bump into some weird and wonderful things along the way.

Essentially we follow my story – my medical case study, following an onset of sudden blindness and paralysis that was the result of a very rare neurological condition. 

I documented every bowl of Weetabix, every tentative step I took and every minute of my day during this extraordinary medical journey. I now offer up this collection of real experiences to you via immersive and highly engaging art installations. 

If you want to know what it feels like to go blind overnight, then you’ve come to the right place.

If you want to know how I went blind, and why and what was going on inside my brain – well, I can tell you about that too.

I have some lovely neuroscientists on board who are also fascinated by my story; and they can tell you the why, what and how.

On a practical note Lizzy Moriarty at the British Museum is championing Talking to Lampposts, and we are about to embark upon a collaboration with the Newcastle Centre for LIFE as part of a permanent exhibition on the Brain that they are developing.

We’re at the final R&D stages, but it’s pretty complete. Watch this space to see it come to life…if you’ve read the blog so far, you’ll smile to yourself as you’ll instinctively know how, and why, some of the installations have come to be. 

Walk this way…

Advertisements

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.

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.

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.