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.

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

 

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.

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.

 

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.”