Doctors couldn't explain Vanessa's twitching eye, so she uncovered her own truth.

Imagine how it would feel to one day wake up and find your vision descending swiftly into darkness. Your fingertips are turning numb, and, as the world closes in around you, you realise there is nothing you can do to stop it. This is what happened to Vanessa Potter. Patient H69 is a gripping human story, made more real by the unique response of one patient and the science she uncovers.

***

My story begins in 2012, when I was a seasoned broadcast producer making all those tiresome adverts you can now so helpfully fast forward through. I was happily married to Ed, whom I had known for more than ten years, and we lived in Crystal Palace, a leafy part of south-east London, with two small, energetic children. I should tell you straight off that Ed is the opposite of me, with a distinctly laissez-faire attitude towards life. He’s the one swinging our children around by their arms and legs as I’m pushing him out of the door in the morning.

We were both, well, just normal. By the summer of that year I was at a bit of a crux in my life. Should I stick with producing, and spend 70 per cent of my time at work dealing with the many high-octane personalities that my industry attracts (that’s the nice way of putting it), not to mention the increasingly unrealistic budgets and schedules that were being imposed on us more often than not?

In truth, my life involved sprinting out of work to squeeze myself onto an overcrowded train, my foot tapping impatiently at every red signal. I’d then jog to my car to don rally-driver gloves in order to pick up our children from their childminder in time. There wasn’t a day that I got home without finding them fast asleep on the back seat when I finally turned off the engine. It was like living on the M1, and it didn’t suit any of us. Ed had an arduous daily commute to a job he was less than enamoured with, so like many women who hide an invisible apron under their professional veneer, I was bearing the sole weight of our domestic life.

I therefore decided that as I was freelance (and the idea is that you can take time off), I would spend that summer with the children. No work, and no tantrums (I’m talking about adult ones as there is no escaping the juvenile variety). I was going to have picnics in the park with wasps and demands for the loo at the furthest point from them. We were going to have family fun and some quality time together – damn it.

It actually turned out to be quite a stressful summer, as we didn’t have a school place for our daughter (a stiflingly long story I won’t go into here), so it wasn’t all happy days. But at least I was getting more vitamin D than I’d had in years, and I loved the lazy mornings and digging in the garden, even if it did mean that the house looked as if a tornado had just passed through it.

It was in September of that year, when our daughter was finally offered a place at our local school and the new term started, that a shadow started to creep over our lives. Halfway through that month, a flu-like virus hit me with crushing migraines and hot sweats that kept me bedridden for most of the time. I am not one for remembering specific dates – I tend to recall events by more visual means. However, I now have a date seared forever into my memory, for it delineates the path my life was to take.

On Sunday, 30 September 2012, I had recovered sufficiently for us to visit the Malvern Show in Worcestershire with family friends. I remember this date particularly, because it was to be the last day of that normal life.

***

Dragons and fairies, Saturday, 29 September 2012

I’m sick of being sick. I’ve had enough of feeling as if I don’t fit into my own body anymore. I am over wearing sweatpants continuously for ten days straight, shivering and sweating at night. I can’t bear the thought of washing my hair and so the whole smell of illness pervades me.

Today is the first day I can gently pull on jeans without my skin screaming abuse, and Ed smiles encouragingly as he hands me a cup of tea. With relief, I remember we are taking our children to their drama group, which is held in the back room of our local cafe. Ed and I gently push small bodies inside and close the door on animated howls and whoops that are no longer our concern.

Flopping onto a chair next to Ed, I feel I’m over the worst of the illness that has taken over my life. It’s a delicate balance, and my wobbly legs move robotically, cautiously, every step an experiment. I’m okay, but only okay. I’d like to rest a bit more, but that just doesn’t happen when you have two small bodies repeatedly bouncing on your bed at 6 a.m. I acknowledge with a silent sigh the inevitability that since I’m now able to stand upright again, I will simply jump back onto my life’s roundabout and, one foot pounding the floor, get it spinning again.

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.

This is an extract from Patient H69 by Vanessa Potter. It is available here.