Mary’s Story

The Hospital Visit

I thought it would do me good to get away from the hospital – the little fold-down bed, the soft mattress that leaves my back aching, the view that I can only see when I’m lying down – up  through the high window, streaked with bird shit. The outlook is onto rough concrete, and another row of windows high above; the potted orchid, intended for Polly, but exiled from the ward as a source of infection, is a garish gash of purple, wilting over the radiator.

The room assigned to me is in limbo on the stairwell between floor 7 and 8. I guess this is where the on-call doctors sleep too. It is a waste space, not easily accessible to general hospital visitors; the right place for traumatised relatives; those of us who wait.

I am isolated here, but also observed – by the man with the sliding ladder who has appeared twice, looking down at me.  I don’t know what he’s doing out there – but his reflective jacket gives him official status suggesting he is not a peeping Tom. The second time he slides past, he gives a little smile, and a wave – human contact of sorts.

This room is a refuge:  an improvement on crouching in the toilet at the end of the hospital ward, trying to make calls to my family, to the lawyers and write up notes. But it is also a trap.  I want to escape from the sound of doors banging, the toilet without toilet paper, my rancid clothes – that acrid smell of my own stress. I want to walk away from the tight shift work of trying to keep Polly calm, trying to make her feel safe; while she must wait for the operation she always said she would refuse. Each time I go back into her room I am confronted by her shocked, patient expression, now that the nasal gastric tube is in, like a bull with a ring through its nose. She has ceased to resist, which is a relief, and yet I can not ignore the look in her eyes – confusion and what I can imagine (but perhaps I am wrong) is a deep down, physical comprehension that they can use force on her now if they wish; minimal restraint, meticulously calibrated – they will have to stop short of using a bridle on her.  For that I am grateful.

For the first night we were able to comfort her, Tess and I, until at 2.30 a.m. we both surrender to exhaustion. But until then we stayed – talking to her softly and trying to explain to the nurses why attempts at brisk efficiency with Polly is counter-productive, and why they would need to allow for the possibility of her lashing out – a kick in the stomach, a sudden claw to the face or twisting of their fingers, wrenching at ligaments. Her physical strength remains – in spite of lying like this for over two year even since the car crash left her in a coma and then a ‘minimally conscious state’, and now in this shadow-land which counts as ‘recovery’ . She still has muscles even though exercised only in spasmodic fury (when her fists clench and her whole arm shakes) or in structured physiotherapy sessions – the skilled team stretching and manipulating each joint with tenderness.

The transfer from her care home, where they know her so well, had gone OK, in spite of our anxieties. Woken up, with us and the ambulance crew all in her room, after she had ripped out her feeding tube, and then the subcutaneous lines, Polly seemed vaguely interested – even pleased with the attention. She let them slide her on to the stretcher and strap her in, without protest. Released from her swaddling in the ambulance, she looked around, and drew on her legs with her thick orange felt pen. She was even calm waiting in Accident and Emergency, at least for a while. But then it broke down, as we had feared it would.

It didn’t help that the nurses on that first ward after A&E seemed to have no experience of profound brain injuries. One briskly poked the thermometer in Polly’s right ear, startling her into flinching and covering her ear with her hand. The nurse then simply switched straight for Polly’s paralysed side – an ear she could not defend, although she tried to squirm against the pillow. I take her hand in mine and she squeezes back, so tight that her fingernails cut into me (faeces are still ingrained beneath her  nails, and I make a mental note to disinfect the little wounds she leaves – rubbing the hand-cleanser fluid outside each ward door into the skin to make it sting).

We protected her, as best we could that first night, Tess and I, her two sisters. Tess reassured Polly as she whined and held out her arm straight even as the cuff tightened for the blood pressure test, a look of terror contorting her whole face, as if she thought the cuff would expand indefinitely until her arm was severed. We tried to turn the placing of the heart monitor clip into a game – placing it on our own fingers, and then toes, showing Polly the red glow, cajoling her to join in the fun. It worked, for a moment, holding her in an illusion, but then she savagely shook her hand and the clip spun off, exasperating the kind but busy nurse. Polly does not understand:  ‘stay still, ‘its just a little prick’, ‘it won’t take a moment’. She picked at the tube into her hand, tugging at the cannula, tightly bandaged in, while I tried to connect the dripping rubber tube back in place.

She would not be comforted. She stared at her hand, holding it out with a pleading look – a lion holding out its paw.  I stroked her arm and tried to explain to her that the IV was there to help her feel better. The truths unsaid bitter in my mouth. Tess focused on the fact that it might help if she has a headache.  But Polly glared at the tube, rubbing her ‘good’ hand against her ‘bad’ hand in an effort to dislodge it. Her distress was escalating. ‘Getting herself into a state’ as the care staff sometimes call it. She became frantic, yanking at the tube, moaning, then shouting inarticulate slurred mumbles – repeated syllables which have a clear pattern. She knows what she is saying, but her world has gone mad.  The familiar strangers, her strange familiars, mock her with their concerned looks and useless incomprehension. She began kicking out, howling. The other patients on the ward turned noisily and sighed in their own distress – sympathetic or angry I could not tell.

Tess lowered the cot sides; she rolled into the bed to lie with Polly – a restraining embrace of love and despair. Polly paused – surprised into silence, or feeling the love and empathy?   I grasped the moment to distract her, reaching for the dog-eared poetry book that has gone with us everywhere for the last two years and two months. It was not it my bag. I had to rely on my internalised repertoire:  ‘April is the cruellest month’, I started – recalling the poem we learnt by heart as children when our oldest sister was studying T.S. Elliot for A-level. The two of us, the precocious ‘little ones’, could declaim most (or was it all) of this back then, but I searched for the next line. ‘April is the cruellest month’, I repeated, ‘breeding lilacs out of the dead land, mixing memory and desire, stirring dull roots with spring rain’, I paused, and stuttered onto ‘feeding a little life with dried tubers’, before drying up completely.  I turned to a safer standby.

The ‘Daffodils’ is innocuous enough – and not pregnant with new meaning. ‘I wandered lonely as a cloud’ I chanted – hoping to lull her into ‘vacant or in pensive mood’, take her somewhere else where flowers dance beneath trees. She gazed at me, still in Tessa’s arms, following the rhyme and rhythm of the poem. She sighed, her eyes smiled at me for a moment, and then her look changed like water into fear, fury, then a sneer. One eye, with the blown pupil, drifting to the left stared sightlessly into the far distance – her other eye focused on me, seeming to glare accusingly at the betrayal of our play acting. But she had gone limp and passive.

That was last week.  We are entirely defeated now. After Tess and I left Polly’s bedside in the early morning she ripped out the cannula three times, and kept the whole ward awake with her distress. We went back to her care home to collect some stuff early that morning (the much needed volume of poetry, her shawl, a notebook)  and the manager approached us, grim faced, ushering us into ‘the quiet room’. The hospital had rung saying they need ‘one-to-one care’ – someone with her at all times to help control her. ‘It’s not your job’, the manager advises ‘you need to look after yourselves for a while, we’ll send in one of our staff for the morning’. That worked for a few hours, but not for long and now the clinicians have precisely clarified the degree of restraint they can deploy against Polly. The system has been systematically wearing us down ever since.

That was nine days ago, All three of us sisters are exhausted now, no reserves left. Tess and I are sharp and critical with each other, unable to care anymore. We leave Polly there, and seek respite away from it all. We get into the heavy Kangoo vehicle, with its ramp and electric winch and straps to secure Polly’s substantial wheelchair and drive to the old pub at the crossroads just 15 minutes away, looking over the green valley and across to the distant hills. Tess had promised me a break away from the hospital, a place to pause.  She has chosen well;  the old alehouse  has heavy wood tables, benches with cushions like church kneelers, an inglenook fireplace, curved plastered walls and ceilings which drop low so  I must duck into the snug.  (A sign saying – ‘Mind Your Head’  hangs from a beam).

Finding a dish without red peppers for Tess is challenging,  vegetarians are often doomed to have ‘Mediterranean vegetables’ with everything. A cheese pie, however, looks good, with chips, instant comfort food. I hope this is OK for Tess’s diabetes, but trust her to make that call – we are beyond words with each other now; and anyway we have two cardinal rules: ‘don’t fuss’ and ‘fit your own oxygen mask before helping others’.  The bar maid is good humoured and tolerant of my endless efforts to remember my credit card code.  I finally manage on the third attempt with the second card.

I take the obligatory wooden spoon with our order number, and find a tucked away table. It is a corner, where we will not be overheard, although we have a pact nowadays, that we will try to talk of other things apart from the texture of Polly’s latest bowel movements or the colour of the mucus she coughs up. Tess tries to explain to me how to resolve some issues with a software package and then we talk about the children’s school work, our father’s trip to Croatia where he is doing work on ‘cross-ethnic reconciliation’, our mother’s paintings, the broken dish washer.

The cider is sweet and strong, softening my edges, blurring my conscience.    On the stone window ledge behind our table stands a lantern  – solid and intricate – casting a dancing shadow of pattern, the candle shining through a delicate filigree of brass.

My mobile rings hesitantly, disjointedly, the signal dampened by the thick walls of the building. The ancient stone doesn’t allow for more than a moment of gasped, fuzzy communication: ‘I can’t hear you’, ‘you’re disappearing’, ‘you’re cracking up’. I reluctantly leave my red pepper and sweet potato kebabs (so elegantly arranged) and elbow out through the heavy door with carved iron hinges.  It is noisy outside, the old oak tree a leaning place away from the rushing traffic. I say ‘I’m ok’, ‘we’re OK’, ‘’there was nothing we could do’ – ‘yes, the dishwasher engineer is coming tomorrow morning’ – what else is there to say? In any case I can still only hear partial sentences, guessing at meaning. Further conversation is pointless, and I could not begin to explain even if the connections were clear, and all background noise blanked out.

I pause on my way back in to the pub to nose into a pile of picnic baskets in the porch – hiding places for jars of onion chutney and mint sauce. The woven wicker and leather straps evoke summers on the beach, children’s stories and Winnie the Pooh. Walking back to my table I feel the buzz of easy conversation between people enjoying a night out, it makes the air thick and sweet. I relish the aliveness of it all, connectedness, and I feel my own existence, in three dimensions here. Then the pleasures of it, the taste of it all, shocks me into not quite weeping for the sister of mine who will never leave the institutions which will home her from now on, who can be ordered by a court to accept the perverse umbilical cords tethering her to life. She must take invasions into every orifice, from the anal pessary or nasal tube to the surgical creation of new entries into her body – directly through her stomach walls.

Our flight to the pub, away from the greyness of the hospital, is also away from her. We can try to take this ‘ambiance’ in, and take her out for short visits too – but it will be like a pale, mocking Disney land version of Venice compared to the real thing to her, my sister. She who declared that the only way to see Venice was to sail into the city with our father, herself at the helm – and that is exactly she did.

This texture of life, or being in the world, will never be hers again. She must live, a half life, a half lie. For now, all we can do is look forward to getting her back to the ‘rehabilitation’ centre. Her room there looks out over a field, it has natural light and attractive curtains. A string of butterfly fairy lights stretches from the fan to the top of the TV set. Tess has made sure Polly’s favourite shower gel is on the shelf in the bathroom – her sense of smell is finally recovering, she no longer recoils in disgust at lavender.

Polly’s own batik canvasses, now framed, hang on the wall:  one showing a herd of zebras in the Serengeti (painted after her visit to Africa), another depicting a gloriously fierce dragon, steam hissing from its nostrils (painted from imagination!). We have filled the room with photos of the garden she created – the sweet pea arch in bloom, the raised bed of cabbage and potato plants.  She is surrounded by snapshots of herself:   sitting contemplating the view from the peak of Pen-y-van; striding across a track in New Zealand with her partner, posing at the celebration of our mother’s eightieth birthday – arms outstretched with a broad grin. Postcards from friends are pinned up on a notice board, telling tales of their on-going adventures and never adding ‘wish you were here’.

We focus on getting her back home, there, to that ‘personalised’ room. We will cheer and feel ecstatic if she swallows, instead of choking on one spoonful of fruit-of-the-forest protein yoghurt – a concoction which has seen neither fruit nor forest, and which leaves a smear of muddy purple gunge at the front of her broken teeth – mixed with streaks of blood from her gums (although so far, we have resisted, the suggestions of ‘dental clearance’ –  one of the most practical options, apparently, of dealing with the dentistry needs of ‘someone like her’ ).

It is time to leave. A numbness is creeping in. As we drive away from the pub a huge red hot air balloon appears through the trees, – at first glance like a setting sun on the horizon. It appears dangerously low. The gas flares once, twice, and as we round the corner we see that it is not as low as it seemed, but safely coasting up above the tree line against the dusk sky. Tess tells me that the higher a hot air balloon flies, the further and further it ascends, because of the contrast between the warmth of the air within the balloon and the colder the air at higher altitude.  It is only when it is close to the ground that it is dragged downwards and the pilot must fight to rise, releasing burst after burst of flame.

Tess drives us back. We park in the multi-storey car park, almost deserted now, and walk back into the hospital lobby and florescent lighting. The automatic doors hiss shut behind us.