Patient H69 Read online

  Not uncommonly, we have convoluted family plans this weekend, involving travelling to the Malvern Show with my cousin Nick and his Spanish wife Maite. As I sip more tea in the sunny cafe, I find myself working out the adult-to-child ratio in my head. Thankfully, there will be four adults to our two children, which as I am acutely aware will ease the load a little. Ed and I have planned a night at his parents’ house in Gloucestershire to break up the journey, so we’re all piling into the car once our bouncing children are returned to us. I’m often surprised to uncover a nub of misgiving, a mild reticence at the thought of visiting my in-laws. This is not because they are anything other than reliably hospitable, but simply because they aren’t my own family, and require just a little more conscious effort. There’s always an unquestioned ease when you’re with your own tribe, rather than an adopted one.

  As I gaze out of the window, the bright sunlight illuminates an arc of sticky smears that little fingers have left behind. Staring absently, I am suddenly aware of an intense knotting in my stomach. My body is weak, and I feel bad-tempered and a little edgy. I normally love the Malvern Show, but this outing (which is always at my behest) is starting to loom over me now. Having a fun day out is all very well, but it’s a different matter when you’re not running on a full tank.

  Malvern Show, Sunday, 30 September 2012

  Maite and I have an indulgent half hour buying bargain seeds, having escaped the children and the menfolk. We peruse the craft tents and shudder at the many crass offerings, novelty peg bags and cheap bracelets that are guaranteed to explode tiny beads across my living room floor in under a week. However, there is one stand that catches my eye as I weave past. Stopping and looking closer, I see they imprint children’s fingerprints onto silver pendants and cufflinks. Turning one of the surprisingly heavy cufflinks around in my fingers I make a mental note, and ask for a flyer, which I stash deep inside my bag.

  The men have given up trying to impress two bored children with tractors that they are not allowed to touch. Instead, they have deposited them in a lopsided children’s fun-house with paint peeling off the walls. I can hear the children scurrying around inside, like mice in a cavity wall. The adults enjoy five minutes of contemplative silence while nurturing polystyrene cups of milky hot chocolate. Stretching up my arms, I turn a full 360 degrees and breathe a sigh of relief. Flopping my head back onto Ed’s shoulder, I am content to no longer be locked into a radar-like view of my children. The day has been frenetic and has sapped much of my energy, and I am nearing exhaustion.

  Before long we are saying our goodbyes and offering each other pacifying comments on how it will be easier next year when the children are a year older, but I’m not sure if any of us are convinced. Some local cider and huge sausage rolls from the food hall on the way out have mellowed everyone somewhat, and the day is considered a success.

  The drive home takes much longer than we anticipated, and the children are fractious and tired. I’m tired, too, and find myself nodding off a few times while Ed stalwartly negotiates the Sunday traffic. With military precision we manoeuvre sleepy children into bed after donning pyjamas without them noticing. By 9 p.m. I am utterly shattered. The tuna sandwich I ate in the car has removed any vestige of an appetite, so I head off to bed with a painkiller. My eyes ache, and my body demands that I sleep.

  TV static, Monday, 1 October 2012

  I have that groggy, not quite woken-up feeling when the kids career past my open bedroom door, in search of a CBeebies fix downstairs. I am alone as Ed has already left for work, and I feel bleary-eyed and a little woozy. Gingerly levering myself up onto my elbows I blink a few times to clear my head, then try sitting up.

  But the strange dizzy sensation is still there. Becoming mildly concerned, I slide out of bed to draw the curtains and click the light on to fast-forward the full waking up process. As the low-energy bulb slowly lights the room, I have to acknowledge that I am now as conscious as I will ever be. I am awake; yet I am still dazed. It’s strange, too, but my eyeballs hurt and I feel a flicker of apprehension deep inside my stomach.

  My mind whirrs with uncertainty, but I have to get the children to school and the childminder respectively – so I just have to get on. Switching into practical mode, I nudge my roundabout to get it moving again. Hesitating for only a beat, I call a new friend to see if she can take my daughter to school. My robot fingers punch the childminder’s number, too, as I realise I can’t drive safely with this level of dizziness. My mind is a beat behind my body and I am slightly flummoxed and unclear on the phone, but I manage to shift our normal routine. I then call my local doctor’s surgery continuously until the phone is answered, and plead for an emergency appointment.

  ‘What’s wrong?’ the receptionist’s voice clips.

  ‘I don’t know,’ I stutter, suddenly unsure of what to say. ‘My eyes aren’t right – I feel weird.’ I pause, knowing I sound ridiculous, then blurt out, ‘I just need to see a doctor!’ It gets me an emergency appointment for 9 a.m. Ironically, I am aware that for once an early-morning call to the doctor is in fact an emergency.

  My friend greets me as I open my front door with concern etched onto her face. ‘What’s wrong?’ I am asked for the second time that morning. ‘I thought you were better?’

  ‘I don’t know,’ I mutter, ‘I think it’s my eyes. Something’s not right.’

  I see a shadow skim across her face as she steps back, gripping her little girl’s hand.

  ‘Keep me posted, won’t you?’ she whispers, guiding my daughter outside. The woman is genuinely worried for me, and her fear is infectious. As I close the door behind them the automatic smile that I slapped on this morning drops silently to the floor.

  Standing unsteadily in our hallway, I am worried for myself. Shaking my head, I blink my eyes frantically trying to clear my vision. My thoughts are racing. I’m aware of an overwhelming desire to organise and articulate how I feel, but I flounder for the words to describe these indefinable sensations. I am catapulted back to a childhood memory of sitting huddled in our dentist’s oversized chair, waiting nervously to have a tooth removed. I recall the curious sneaking numbness as the anaesthetic slowly crept over me, of smelling toffee and mint as my body melted, then oozed down a smooth, spiralling slide into unconsciousness. I have that same corkscrew feeling now, but without the childish anticipation of a lolly to wake up to.

  Am I slowly losing consciousness? Is it even possible to lose consciousness slowly? Fuzzy static hums in front of my eyes with an alarming constancy; it won’t go and I can’t seem to shake myself free.

  At 9 a.m. sharp I see a locum doctor who, to her credit, takes me seriously. I’m always concerned that whenever I see my doctor (normally with one of our children in tow) they will just dismiss me out of hand as a paranoid parent. I have to acknowledge that I’m not exactly walking in the door with a set of easily diagnosable symptoms here. Feeling weird? That feeling when an anaesthetic kicks in? She could easily smile patronisingly at me and put all of this down to being a stressed out mother who’s just had flu. But she doesn’t.

  I am with the locum for more than forty minutes, during which time she thoroughly tests my vision and balance. One test where I have to follow her finger from side to side by only moving my eyes forces me to sit down with a thump, overcome by nausea and dizziness.

  At the sight of me with my head between my knees she calls A&E (Accident and Emergency) herself, muttering, ‘I don’t know what’s wrong with you, but something is.’ As she dials the hospital she turns back to me, her hand covering the mouthpiece, and whispers, ‘You should call your husband.’ Before I know it, a cab is here.

  At this juncture I do decide to call Ed. I seem to call him several times a year with an emergency, but it’s not normally about me. We agree to meet at A&E, which he doesn’t question – but then he never says much on the phone.

  At A&E I hand over the letter the locum doctor wrote for me, which I now realise I’ve had gripped in my hand the whole time. The receptionist smooths it out and looking up, smiles sympathetically at me. This is definitely a less brusque reception than previous experiences here.

  ‘It’s my eyes,’ I start unconvincingly. ‘Something isn’t right.’ She nods and asks me to sit down and wait. Before long the reassuring silhouette of my husband wanders through the door and, leaning against him, I wait some more.

  Eventually a bulky triage nurse assesses me, repeating my answers back in a thick Jamaican accent while avoiding any eye contact with us. After another endless wait, a very young junior doctor with a disturbingly trendy haircut finally arrives at our bay. He starts with the same tests the locum doctor performed, but can offer no suggestions as to what is causing my strange visual disorientation. I try to explain that I can see ‘TV static’, that I have a visible fuzziness right in front of my eyes, like the old-fashioned TVs used to have when the programmes had finished for the night. This description (aside from just ageing me) only seems to evoke a perplexed look from him. I am given an ECG, a chest X-ray is ordered and the doctor is gone as fleetingly as he arrived.

  I try to describe my strange symptoms once again to Ed, but he shakes his head and whispers that I am not being clear, and that the doctors don’t understand what ‘TV static’ means. It is evident that being stuck in A&E all day has caused him considerable stress. I know he’s anxious to be back at work, and from the looks he’s not giving me I start to wonder if he believes there’s nothing wrong with me.

  But I know there is.

  Messages clearly aren’t getting through. Why isn’t there a universal word to describe this bizarre feeling? Maybe that is the problem; for what I feel is definitely more sensation than anything concrete, and that makes it all the more impossible to explain. Feelings are so infuriatingly subjective, and my unusually vivid descriptions are falling on deaf ears. I need someone to crawl inside my head and see what’s going on for themselves – then maybe they could describe it.

  A little more head scratching and more tests later reveal nothing conclusive; they cannot find anything wrong with me. By the end of the day I have the distinct feeling that they didn’t believe me, or at least that they didn’t understand me. Just how do you explain to a person whose life is medical, scientific and evidence based that you simply feel weird? In truth I haven’t given them much to go on; it is only my instinct telling me that something is seriously wrong. The only obvious concern at this time is viral meningitis – the severe headaches and light sensitivity of the previous week could be pointing to that. Either way, I am ushered out of A&E and given anti-nausea tablets, which I never take because I know that isn’t the real problem. As we near the door a convivial consultant remarks that if they weren’t so busy they would keep me in for observations. I follow his gaze and see several old ladies with oozing head wounds queued up on trolleys in the corridor. This in itself is an odd sight, and I blink rapidly as I take in the scene. There is a strangeness to the world today; something is powering a deep sense of unease that I can’t quite put my finger on. It’s eerie to think what might have gone differently if I had indeed been allowed to stay in that night.

  I go home straight to bed worried, yet quietly praying that I will wake up the next morning feeling normal again.

  Spilt milk, Tuesday, 2 October 2012

  I awake much more quickly this morning, alerted already by a clenching unease deep inside my gut. Almost before I am fully conscious, I have a strong sense of something amiss. Tentatively opening my eyes, I see that I am not registering the morning light as I normally would. It feels darker, with a brownish haze over everything, and even after blinking and rubbing my eyes it doesn’t clear. Seeking an instant comparison, I mentally riffle back through my memory bank and realise that it feels not dissimilar to wearing dark sunglasses inside. Except, of course – I am not.

  Sitting up quickly, my analytical brain assesses what vision I have left, and puts a number to it. I estimate that I have lost around 70 per cent of my sight, and the horror of that acknowledgement ricochets around my head like a metal bead in a pinball machine. I can still focus, and as I scan the room everything is where it should be, but it feels disorientating and alarming. It is all just wrong, wrong…wrong.

  I hear Ed moving around downstairs. Unusually, he is at home this morning, as today is our daughter’s fifth birthday. I can hear the muffled squeals of delight as wrapping paper is attacked and shredded.

  The smile drops off his face the instant he sees me venture cautiously into the room. We lock eyes, and our silent conversation confirms that we need to go back to A&E. No words pass as we cuddle and make a fuss of the excited little girl squirming around on our living room floor. She is absorbed in her special day so I manage to busy myself searching out the cupcakes I bought for her to take into school, and find and fill up her water bottle. I am distracting myself, maintaining the façade of normal life, and it is remarkably effective. The morning routine is so embedded into my life that I can go through the motions without any thought. There is no time to assess my vision, to work out what I can or cannot see – I just have to do it.

  As I pour milk onto the children’s cereal, I notice that my left-middle fingertip is numb. I wiggle it about to make sure, but it is definitely frozen at the tip. A deep curiosity creeps over me. When did that happen? Why? Preoccupied, I drip milk onto the plastic tablecloth, but this morning I don’t reach for the kitchen cloth to mop it up.

  While the children are brushing their teeth with Ed, I find that I have floated my way back upstairs. Snapping into action, I dig out a faded brown rucksack with a broken zip, and start packing overnight clothes. I’m an expert bag packer, and even in my shocked state make sure I gather everything I might need for a stay in hospital. Gritting my teeth, I feel a grim determination – a steeliness – come over me. This time they are not sending me home! The voice is so strong that I wonder if I have spoken the words out loud. My familiar rucksack packed I sneak downstairs, keeping it out of view from the children so as not to spark a volley of questions.

  Ed and I are both on autopilot, but hurrying out of the door we decide to deviate slightly from our standard plan, and swap the order in which we drop off the children. However, this simple idea is thwarted when we get snarled up in a rare queue of traffic just metres from home. Without thinking I ask, ‘What’s going on?’ realising with alarm that I can’t see for myself. Every stilted question that passes between Ed and I is loaded with fear and bewilderment. I try not to let my voice sound uneven, keeping the deep dread I feel internalised. I hold my breath and try to stop my rising panic from escaping and floating onto the back seat. Children are universally wired to shut out the loudest parental demands, but have an uncanny ability to pick up the smallest hint of something wrong.

  Staring at Ed’s profile, I silently will him to know, to really understand that I can’t see properly. He has to know I am not being melodramatic. We are stationary for about ten minutes, the only noise being Ed’s fingertips drumming rhythmically on the steering wheel. After winding down his window and leaning out, his strangely detached voice describes roadworks and a lorry stranded across the road. ‘Is it foggy today?’ I ask, as he clicks his seatbelt back in, but his clenched jaw answers my question immediately.

  I realise I don’t know what I should be seeing out of the car window anymore. It’s as though I can’t remember, but what I am seeing doesn’t feel right at all. The roads are enveloped inside a grey blanket, and a huge fog has descended on the car. I force myself to remain calm, and relief floods through me when I recognise the street corner at which we are stationary. I don’t know why that should be particularly reassuring, but I persuade myself it can’t be so bad if I can recognise something outside. I am in a half dream. This place is somewhere I know, but at the same time it feels like an illusion.

  As the traffic starts to move again I’m painfully aware that I’m commentating on everything I see outside, while Ed remains utterly silent. The more vocal I become, the more he sinks inside himself, and I can see his face slowly start to cave in.

  My panic rises again when Ed drops me at A&E alone so that he can take our son on to the childminder. I am deeply unhappy about being left in the waiting area today. I see the same receptionist on duty, but I’m a little more forceful this time. My body is already adapting to my reduced sight and I instinctively lean towards her, insisting that I see the doctors as soon as possible. When she doesn’t look up I hear my own voice reverberate around the room, quivering but loud, ‘Please. I’m losing my sight!’ and the sound of it startles me.

  By the time Ed arrives back I am jittery and restless, only calming when his arm instinctively snakes around my back. Another nurse assesses me, infuriatingly writing down that my finger is painful. I silently berate her that my finger is not painful, only numb, and in fact it is only numb at the tip. My inner producer bristles at what feels like an important inaccuracy.

  It is the same junior doctor who sees me again, but he still cannot find anything wrong with my eyes. We are becoming more insistent that something is done; there seems to be a lack of urgency, an apathy that hovers around my hospital bay today. The same genial consultant suggests that this time I am sent up to Ophthalmology, given that my sight is now physically affected. I am told that I can see a consultant ophthalmologist in his clinic that afternoon.

  Finally, hours later, I’m deposited in a wheelchair, and as we pick up speed down one corridor I inadvertently grasp the armrest. As I do so I am vaguely aware that my right finger is now also numb. I notice this fact unceremoniously, as a fact, rather than as something to worry about. Tapping my left finger with my thumbnail, I feel that the numbness there has now spread further down. I am transported back in time to walking home from school on a freezing cold afternoon, trying to retract myself as far as possible inside the woolly depths of my duffle coat. I can feel the stinging numbness of my fingertips scrunched inside my sodden gloves. But I am not in the freezing cold right now, so while this numbness is familiar, it’s frighteningly out of place.