Patient H69 published today!

‘You could have a great barbie out there,’ my brother yawns as he pulls up the window blind, letting the early-morning sunshine stream in. He stretches noisily and I hear comic squelches as he attempts to extricate his sleep-crumpled body from the marshmallow chair. His fidgeting last night suggested a restless sleep, but I am still hovering in between consciousness and ‘train-crash sleep’ myself, so I gently bat away his random chatter.

Mentally scanning my body, my feet still feel painfully cold, but there’s also a tightness that makes me wonder if someone has wrapped them up in Gaffer tape too. I shrug off this ridiculous notion; my brain is still playing tricks on me. I sense Dan shuffle over to my bedside, his silhouette ruffled and disheveled with crooked edges. His movement gently wafts sleepy smells over me and, still groggy, I reach out and touch his rumpled pajama bottoms. Since my sight spluttered back into life yesterday, I am being pulled towards those patterns and shapes that float around me. ‘Are those mine? ’ I ask him, but Dan doesn’t answer as he’s already lumbering off in search of the nurse’s desk, no doubt in boyish hope of a morning coffee. He returns moments later. ‘They laughed at me,’ he sulks. ‘Hardly surprising if you will insist on wearing my pink pajamas,’ I snigger.                                        ‘It was all I could find,’ he shrugs, his voice sheepish. I know this is very likely to be true, as my brother has a limited interest in clothing – other things are more important to him.     As I start to shift in the bed I feel incredibly stiff. This is becoming a common occurrence upon waking up. Dan hovers protectively when I start to slide off the bed, worried that I might crumple to the floor. I know I am being bloody-minded, but I still refuse any help. My right foot is dragging on the floor as I shuffle along, but this morning I don’t care.            Dad arrives early to take over from Dan, and I am left to my own toilette this morning. My father lives in South Africa normally, and only spends summers in Britain. After three months here he is due to fly home very soon. My illness, unexpected for all of us, is causing him some distress as he would rather stay on and help.                                                        Lying on my bed having only dared a cursory wash in the sink, I am worn out again. Slowly negotiating myself into the bathroom, even with my newly acquired stick took a huge effort. Pushing myself back up onto my elbows I ask Dad what he can see out of the window. Sighing and shutting his laptop lid, he walks over and looks out, ‘Well, it’s a bit strange, actually. There’s this huge balcony with railings all around it, and buildings in the distance.’ ‘Ahh,’ I smile to the ceiling. ‘Perfect for a barbeque, then.’                                                              I can’t see Dad’s face, but I can sense his puzzlement.

It wasn’t until I regained some of my sight and could see a photograph of the marshmallow chair that had been dragged into my room at St George’s hospital, that I could smile and understand its comical nickname. Akin to a 1980’s reclining airline seat, its softly padded seat did indeed resemble pink marshmallow. Devoid of sight, I listened to my family manoeuvring themselves (in varying levels of dexterity) in and out of that chair for the two weeks I was there.

It took 3 days for me to go blind completely, and to lose the use of my hands and feet due to a sudden and rare neurological illness. But, it would take over a year for my sight and movement to return. It did return – but not in the way any of us might have expected – and my visual odyssey – for that is what it was – started me on a journey of discovery I could never have expected.

IMG_3374

 

Enter PATIENT at the checkout on Bloomsbury.com to receive 30% off Patient H69: The Story of my Second Sight by Vanessa Potter.

 

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…

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…

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.