Status Epilecticus

Early Evening 7th December 1996

I think that every epileptic fit is perculiar to each individual. The poem below is my signature.

Status Epilepticus

The indelible fear

when the music plays loud.

Stretching and pulling on

every note.

A fist to a wall.

A zing to a snap.

A penchant for violence

Is on the fast track.

She’s moving quicker

With a silent flicker,

She’s falling backwards

As I’m getting bigger,

A towering colossus

Breaks on the ground,

A snake down a ladder

With its shivering rattle.

The roof of my mind,

Its steel now rent,

By a tumbling tornado

Of a force majeure.

There's a lake of green piss

and a stream of black bile,

The march of the shoes

Form a ring at the head,

Hands stroke the air

With fingers that dance.

The train’s stopping.

There's words in a pot,

A smell like honey

Drenched and hot,

A swelling of the tongue,

The crushed lower lip,

An old man’s spittle,

Sweet baby shit.

I walk this city,

Urban in flight,

Where muggers trail

In the shop window lights,

In search of doorways

And grim litter traps,

Where I can Fit silently

In Peace when you pass.

KM

The Gentle Black Haired Nurse

7th December 1996 Post-Operative

Someone's calling. Shut my eyes. Not me. They are deep in my inner ear. The usual litany: regiment, rank and number. Awake. Fear.
A black wand. A light in my eye. Have they come to magic up some miracle cure for me? Oriental girl. A doctor? Small hands. At my bedside smiling. Shines the light again and says pressure behind the eyes. Feel sick. Folding inwards. Who am I? This is not my body. Diminished. Travelling back in time...

Headache. New nurse with short black hair, eyes as black as newly mined coal; she is from elsewhere. She hands me my shorts. Thanks. I can dress myself. She does not look. I'm covered; no indecent exposure. My arm is dead. She reassures me; it's only temporary. She shaves my face. Not bad.  Husband or boyfriend should be proud. She's smiling back. I smile back. Love story. She's pretty. No make-up. Sleep sweet dreams.

I wake. She's back with a silver tray. Bandages and tape. Her breasts in my face as she repairs the damage. Please move them. Please. No bandage now. Cold air on a bald head. POW 1945. Not worthy of that. thought. She's dressing my head. She's smiles. Her job done

Who is the Newcomer? Wheel him into his vacant lot. His kids look at him in horror. Daddy's shaven head. . Get Well balloons tremble in the air. Daddy's coming home soon. I look at Mom. She's finished, I can see it in her eyes. She can't wait to leave. Can't blame her. Who wants to be around that? Anyway. Where are my kids?

Nurse black hair is back. Tablets Phenytoin and Warfarin. Rat poison. A weak smile. The winter sun floods the ward. Can see down  below now. Parked cars arranged like dominoes. My my first cup of tea in days. Taste so fresh. We speak. She has no accent. I fall asleep.

Nurse Station

5th December 1996 Post-Operative.

Why can't I lie on my side? These sheets are heavy weights. Bed's hard. Who are they and where are they going; let me me see. You're pulling at my skin. What the f***k are those? Hanging bags: scarlet, clear and cream. Drip. Drip into my vein. Through a butterfly...
Let me sit up. Let me rise. Shall I scream for help or wait? Passive. Wait until someone passes. I know what that's for, the paper mache box with the big hole . What chance. Eyes close. Pictures on the backs of my eye-lids. Biology lesson, 16, a rat hammered to a board and dissected. Found babies inside. I am too young for this. This never should of happened to me. Let me sleep. Can't. Flies buzzing around my bed; nagging. Go away please I just want to sleep. It's a nurse. Nurse with big hands. She smells of lavender and sweat. She's had a long day I bet, but she can go home now. Stop crying prick; as if she cares.
Rank bad smell everywhere. Boiled vegetables and burnt meat. Sleep.

Awake. It's dark and I feel different. Another nurse, a silhouette, a reflection in a window. She's close, I can feel her . Raise my neck to check her out. Pale and plump, just a child. Grey pinstripe trouser-suit. A student. Nasty smell of garlic on her breath. Please don't leave me with her. Drip. Drip into my vein. Bed's rising. Head hurting. She's calling me babe. No, you can't say that; I am, I've forgot, about 30 perhaps, she  looks about ten. Now she'll ask me where I am, my date of birth. Always answer correctly. Get out of here.
Bed raised. I can see everything now. Curtains open. Worse than I expected. Shit. Frightened. Dark. Only candle light. I can see their shapes. Little hillocks. Sandbags hiding  4 sleeping bodies. I need to get back to before. Christ, a tear.

No tears. I am conscious. Oh this f***ing place. They should sluice it down and wash away all the death. Here again, I knew it.. Don't cry. I am crying. I will smash this place up; punch holes in the walls, over and over again. I will break every pane of glass, rip every pipe from these old hospital walls. My alma mater. Hatred of my heart. I want  to lie down again. I  feel sick.

In a Lonely Place

3rd December 1996

It's 3.00 am and I am sitting on the edge of my hospital bed looking down at an empty car park. The ward is silent and dim. One night light on and that's mine. I have no intention of sleeping. I sit and watch as columns of steam rise and twist through the cooling vents. I sift through my broken thoughts, which are becoming more and more erratic, but it occurs to me, that no-one can prevent me from leaving this place. No-one, can bar the way. All that I need to do, is to sign the paperwork and then walk. So, why don't I? Is it that I am scared of authority, confinement, pain or being branded a coward? No, I am frightened of the unknown and dying. It is that simple.

6.00 am and there's a stranger at my bedside. He hands me a set of forms to read and sign. I sign, I don't read. He then imparts a little know fact, that there is a 2 percent chance that I could die in theatre or be condemned to living my life as a cripple. I thank him for his honesty and he leaves with a rye smile on his face.

Time accelerates, the hands of clock are spinning around and around, faster and faster. I cannot control time, I cannot send the sun back down, I cannot stop the nurses walking up and down, down then up. I cannot stop this day. I wish that the world would end today. A selfish thought I know but I do not want to die alone.

At about 8.30 my hair is shaved off and I am told to put on the backless gown that lies on the bed. It feels like I am about to be executed for a crime I did not commit. The event is starting to takeover. Means and ends are tangled. My whole body is shaking and my teeth are chattering. My mind is a void. I am finished. I am placed on a trolley and wheeled away. The floor dips and then opens into a pre-op room. I am shot full of drugs and I am told to count to ten...

I wake, dead or alive, on a lawn of lush green grass soaked in dew. I can  see an old white-washed brick wall. Bushes and trees everywhere; elms, poplars and sycamore. Mimosa and jade. The scent of honeysuckle rides on the air. And then it starts to rain and the ground starts to move. I have no foothold and I feel like I am sliding off the very face of the world. I am disappearing.

He Talks of Scalpels

The back end of November 1996.

The Queen Elizabeth Hospital (QE), waiting for another consultation. I haven't slept for weeks, I have no appetite, no desire to exercise and I definitely do not wish to converse with anyone. Small talk annoys me and big concepts dwarf me. Tired, I shrink into my seat and listen to the coughing behind me. My name's called and I am surprisingly quick out of the traps. I race towards the door at the end of the corridor with a new found enthusiasm named  'hope.'

Mr Fl  is sitting hunched over his papers. He looks up and finds me, yawns and says, 'you know why you are here?' He recognises the confusion in my eyes and then begins to spell it all out in a brusque and emotionless way. There is no warmth in the room now, no connection and no bond. He alienates me. His status, his knowledge and his skill overwhelm me. I hate him from the outset, this is the person who is going to enter into my head and mess around with my brain and my thoughts, that I, have struggled so hard to construct throughout my life's time.
He sits on his cloud and waits. He speaks, and rather than engendering confidence, he scares me shitless. 'You have a tumour the size of a golf ball in the parietal lobe of your brain.' He points to a dark shadow on the MRI image. 'I will perform a craniotomy to open the skull and then cut down through the brain and take a sample of tissue for analysis. If the tumour is accessible I'll give it a good scrape and suck it out.' I look into his eyes and search for swastikas and yellow stars. I look at his face, it's stern and military grey. I am thinking abortionist, rapist and murderer. My ex-wife is blathering on now about hospitalisation, procedures, recovery and the future; sensible things. And then, she does the unthinkable; she asks him if we can see the hospital ward. I look at her askance. Is she a lunatic? Would she like to swap places with me? Of course not.

I slither over hospital floors that are dirty and worn. A stick of a woman with no hair gallantly walks a drip along the busy corridor. I am getting nearer. I can smell it; the end of the line.
The surgeon and my ex-wife wait  ahead. I slow down and stop  and look into the distance at the arrow points downward: Neurosurgery East Lower Basement. Down we go again, another circle of hell, through the stench of unflushed toilets, over cooked food and relatives dressed in tobacco scented coats.

I enter the bright hall of high windows. The ward sister greets us and we walk the ward. The surgeon Mr Fl has fled the scene. We are left to walk alone. I bow my head and look at the floor. When I raise my eyes I see her sitting up in her bed, she is the most forlorn creature I have ever seen. Half her hair has been razored away, her skin looks as thin and delicate as the wings on a moth and guess what; she's f***ing crying. Weeping. It's a shame for us, isn't it?

The Twenty Seconds Window

I wake. I pull back the bed clothes. I sit. I stand. I walk and it's all cool. I think, work and food. I am granted twenty seconds of forgetfulness before my brain chooses the right channel and I think; brain tumour and cancer.

The Devil

November 14th 1996.

Late morning in Walsall. Rain in the wind. Mid-November. Black clouds. A pale sun that goes in, and then out, and then just stays away.

In the out-patients department, there is a log-jam of geriatric bodies trying to shuffle to desks and stations. Some have got to the other side and wait for hospital transport, sipping weak tea, moaning; always moaning, about doctor A,B or C, or their bowel motions or the death of Mr X,Y and Z. There's no young people to be seen, just me in my early thirties. I tell myself amid all the bodily decay that there is  nothing wrong with me. I yawn, feel sick  and wait for a door to open.

12:05 pm

The door opens and she looks up at me from behind her desk. My consultant's name is 'Sandra.' She is a scrawny, sallow-faced woman on the cusp of fifty. She is shabby and poorly dressed. She does not give off any air of solidity or trust. I am immediately worried by her silence.
She breaks her face and says, 'I am sorry to tell you Mr. Moseley that your MRI scan shows that you have a Brain Tumour.' Everything goes strange. Everything is still but moving. Everyone is silent but talking. Everyone is looking but not seeing. Everything is. Everything is. Everything is...
I stand and question what I've just heard. My ex-wife is crying hard in funeral sobs. 'Sandra's' talking and harping on, and on, in a strange tongues. I look into her eyes and then she starts spitting, her head is spinning around and around, her nails are scratching the wooden table, her feet are stamping one, two, three, four and then she starts laughing. Laughing.

12:20 pm

Back down the corridor walking on air. Sitting in the car. Then back on the road where every black and evil thing crawls out from its dirty hole. The rats are shifting beneath the pavements, the crows split the rubbish bags for new carrion, a hearse stops at the traffic lights, babies in push-chairs are screaming and bawling. I look out of the window, waiting for 'war, famine, pestilence and death' to ride by. I bury my head in my hands and see nothing but black.

1:30 pm

On the bed sobbing, the pillow's soaked. Cotton and lachrymose. Have to remember to collect the kids from school. Have to tell the kids the truth. Need to sleep and find a better place...

My Mother; the Queen Elizabeth Hospital, Edgbaston, Birmingham B15 2TH

October.

Black clouds. A gale force wind. Crows and magpies on the wing.

Down on the the land below, the ex-wife and I, trudged through the muddy car park. The hems of our jeans caked in mud. Mud like the Somme, a thick unyielding sod. What I would have given for a pair of wings. We went on, and on, up the incline, passed an old guy pushing a woman in a wheel-chair. I said 'do you want a hand?' The reply was curt and quick, 'no, we're okay mate.' I raised an eye brow and thought, 'too proud.'

We arrived at the top of the hill with our lungs near empty. We stood, and then we bowed; the Queen Elizabeth Hospital, Edgbaston, Birmingham B15 2TH, where two stone lions guarded the entrance. I  pushed hard on old heavy doors. They resisted and refused to open and I took heart from that, as though it were some kind of an omen. I was about to turn heel and run, when a 'white coat'  appeared and opened the doors; 'Hello, it's this way sir.'

Immediately, I sensed tension, apprehension and desperation. This was the stuff of acute medicine. This was not a general hospital, this was not broken bones and appendectomy, this was the end of the line; the place where the ghosts hung out and where, the line, between the kill and the cure, was a fine one.
I scrutinized the map and the colour zones, just like London's Underground. Streams of bodies everywhere, bound for the stations of oncology, neurosurgery, chemotherapy, radiotherapy and my destination; imagery.  

Searching for Weapons of Mass Destruction

Early September

Testing one, two, three. Testing one, two, three.

I have a bed in the Hospital basement. There are thin bars of sunlight making  patterns on the antiseptic floors. Motes of dust hang in the air. Must be a nice day, outside of the Walls. I am isolated, craving  the mid-morning swill that they call 'coffee'; even  the expectation of drink breaks the monotony. I have been here for hours, that are now turning into days. I have not seen a doctor but I have seen, numerous phlembotomists, who have punctured the surface of my arms, so many times, that my arms are now the colour of  bruised fruit. I look down at my tram-lines and I wonder what I am becoming.
I lie back, and I know, that there is a  quiet dialogue going on that concerns me. Whispers and sideways glances but no-one is saying much. The blood tests are probably back by now and for some unknown reason, I know they'll be okay: red cells, white cells, vitamins and enzymes. Blood chemistry okay. I had passed the first test, and moved one step nearer to home.

And yet the tests did not abate. 'You need to have an E.E.G.' Naive and very trusting, off I went unaccompanied by to the top of the building, rain running down the windows, grey blankets of cloud, a miserable Tuesday, sitting on plastic chair, absorbing with mild curiosity, the posters about epilepsy and charities.
I entered 'the laboratory.' I am looking around for white rats and Rhesus monkeys, a woman in a White Coat, stands over the sink and whisks up a thick paste, which she then proceeds to smeer all over my head. Strands of my hair were then attached to electrodes, which when interlinked, formed what can only be described as a bathing cap that has been made out of wire. I needed an explanation, and quick. The White Coat mumbles, 'I am going to check the electrical activity in your brain to see if you are an epileptic. Okay?' No. I'm not okay. Can't she see the sweat forming on my brow, the claw marks where I've ripped the stuffing from the arms of the chair and can't she see the irrepressible trembling of my right knee? Course not.
She fires the machine up and I watch the print head shuffle to and fro as it spews out mile upon mile of 132 column paper. My brain is talking to itself in psycho-babble. It scribbles patterns that only a 5 year old could make. The test stops suddenly as the paper runs out. Silence and a raised eyebrow. 'I cannot see anything abnormal in that.' I just look at the White Coat, and tell her to wash my hair.

I am eating little and thinking too much. The food is inedible and my thoughts are getting darker. There are two patients along with me: one is a very tiny old man who screams when the nurses pour him into his bed and a fat old gentleman, on a nebuliser, who keeps me awake all night. I am on the verge of discharging myself when The Houseman arrives and promises me that I can go home after I've had a CAT scan. Excellent, I'm going home.

I sit alone in Imaging, reading a woman's magazine from a year ago. My name's called, they have dropped the formality now and refer to me by christian name. I enter another white room where I am confronted by a structure at which pagans and heathens may well of worshipped at.The giant white ring, towers from floor to ceiling. It stands and commands, like some mighty monolith, but I'm not scared any more, and so I go, willingly, to lie upon its altar.

The next morning I have a lie in and sleep until 3.00am; it's discharge day. 8.00am the Houseman calls with a gaggle of bright eyed and eager students. He stands at the foot of my bed and raises a monochrome slide to the light and says in a cool manner, 'You see that tiny black spot at the back of your brain.' He takes a deep breath and the exhales, 'that's a bleed. I think you may have had a very small stroke. You will need to have an MRI scan to confirm that.'

I passed through the Hospital doors and inhaled the diesel fumes and my ex-wife's perfume. In my pocket, a bottle of aspirin rattled. The White Coats had looked hard, but had found little substantive evidence, of any really big guns.

A Life Sentence

I was awake and feeling good but those around my bed;  ex-wife, mom, dad, ex-brother-in-law and father-in-law, looked ashen and afraid. Indeed, they looked as though they had followed me from the very same hell, that I had emerged from. They stood there; not knowing what to do or what to say. The best policy for them was to leave. I promised them that I'd see them in that afternoon. The ex-wife and I sit and wait.
A young nurse, small and plump, hair stretched back and secured by a hideuos scrunchy, checks my pulse and my oxygen levels. I wait for something profound to fall from her lips and it certainly does - 'da yoe wona' a cuppa tae luv.' I am on earth, I am in 'The Black Country', I am in Walsall, I am in 'The Manor Hospital'; WS2.
The 'cuppa tae', tastes surprisingly good. But I want to know, what marks I've got; I want to go home. Then he eventually turns up, dressed in theatre scrubs, a tired nocturnal creature, he checks my reflexes, he looks into my eyes, questions me about 'drugs' and leaves. And I understand why he leaves, for the whole place is bedlam; the night clubbers have arrived and all I hear is crying, moaning, screaming, threats of violence and a  man chatting a strange mantra about blowing up the hospital. I was glad at least, that some people had had a good night out.
Eventually, 'scrunchy haired girl' reappeared and we fill in the forms together. It's quite cosy really as we sit and talk about whether I am prone to urinating on myself, shitting myself, or indeed, self-harming myself etc. But I've got it by now. I sign the form and I am in. Happy days.
I am, by my own signuature, institutionalised and about to be dehumanized. The symbols of the sick - the hospital band, the 'the hospital number' that will track and trace you for ever more, the backless smock, and the pyjamas and the slippers, which, I always keep warm in case of emergencies. 

1996 - A New Life

1996 August Bank Holiday.

She decided that we should go to the cinema. I had no problem with that. She chose another Sc-Fi film, 'Total Recall', and I had no problem with that either. I didn't watch the film, I spent the 120 minutes worrying about whether I would have a job to go to at the end of next month. I was on the wrong side of a company takeover. Not good but it was only economics; people conquer debt and bankruptcy. It's tough but subsistence living is still living. I worried, over-thought and worried further, until someone said 'you're stressed out, you are going to be ill.' Wrong phrase to use with me; it was too modern and  intangible.

I went to bed in blue boxer shorts, the sound of the TV rising from the underground, rising up and passing through the floorboards.In spite of the hollers from below, I must have fallen asleep quickly. I do not remember any nightmares or happy or sad dreams. It was a deep and bottomless sleep, a benign nighttime, that anticipated an eventless Saturday.

I never made it to Saturday though, not in terms of my old life, so it was Friday night, when I was confronted with two paramedics trespassing in my bedroom and questioning me as to what drugs I had taken. Confused, I could not answer. My jaw, like the rest of my body, felt like it had been dislocated . I was paralysed and prone, I ate the dirt off the carpet, I looked for invisible dust mites; I was down and I was out.

Things started to hot up when I was carried from the bedroom and set down in the ambulance. This was the point at which I started to look around and begin to associate objects with their function and their mission: heart monitor,defibrillator, tubes for aspiration, hypodermic needles, syringes, drugs, rubber gloves and lastly, there was the mask, the one that covers the mouth and the nose; the same one that's released when the plane is coming down. But I did not want oxygen and I did not want my mouth and nose covered because these are things that tell you, that you just may be dying. You cannot exorcise this feeling when it takes root; the intense 'panic', a 'terror' that only the hunted know, the sick 'fear', that waits the for the bullet of a firing squad; it all adds up, and the smell of death is everywhere

However, amid all the confusion, a part of the brain is still trying to act rationally and it' asking some very big questions: 'I am only thirty three and I am too young to die', 'where are my children', 'where are my mother a father', 'there's no god', 'no man on a cross'; there is nothing, not one grain of comfort to be had. I am totally alone; scenes from my life are not replaying; all their is is pure dread.

I can hear the ambulance screaming and I am moving. The orange lights shine down from above. I am conscious, I am watching every peak and trough on the monitor screen and every slight increase or decrease of my pulse rate. The ambulance slows and opens its doors. Its a warm and clear night. The stars look like pin heads in a sky of black paper. The casualty doors open and close. It's bright in here, behind the hospital walls.

An Open and Candid Invitation.

I was talking to a psychologist friend of mine quite recently about 'blogs' and he suggested that I write about the last 19 years of my life. My reply was simple; 'why don't you xxxx off.' Then I began to think, my life has never been glamorous or peppered by worldly experience but it has been different and perhaps, interesting.

To be frank...I have travelled little, I have never worked abroad, no; I have been tethered to the same small town that I grew up in, the one I could never leave. Some may say that I should of been more ambitious, more ruthless, cared less about others, but that's just not me. I have always been in for the long haul. And that sort of mentality has served me well. Especially in the places that I have 'holidayed' in. The places on the edge of the towns: the hospitals.

'Hospitals', have become over the years my hotels, restaurants and coffee bars, in which I have literally put my feet up and wiled away my days just waiting, always waiting for my brain tumour to return or a family member's cystic fibrosis to worsen. I think a lot about how 'massive' everything has become, how everything in my life has been reduced to 'life' and 'death' in it's barest sense. When you are in this place, it becomes really difficult to understand everyday life, you know, what's on the TV tonight, shall I eat out, what clothes to wear etc. Difficult and meaningless, that's it. 

People often say 'you're lucky. People die of brain tumours' and yes they are right in a very obvious kind of way, but living with the memories and the fear of re-occurrence, presents even more obstacles, irrational ones. My latest one is, 'will I wake-up in the morning.' Hence, sleepless nights are the norm!
This is how it goes on and this is what I'm going to do with this blog, just go on and on until I come to terms with some of my issues, by the way, I don't like using 'I' and 'My', but I suppose I have little choice.

If this is a too raw and random. I'm sorry. Just ignore the following.