(Care in which Community? There are Lots and Lots)
That word SCHIZOPHRENIA is THIS scary:
NO WHITE BANDAGES
She asked: “What name has the illness you described?”
Wide-eyed, inquisitive, burned up by vulgar need to know;
I thought to myself, let’s see how you take this, said “Schizophrenia”
As if I had grown dragon wings, breathed fire,
As if she’d suddenly found herself in starless darkness,
She rolled her eyes, showing their whites, seized her wine, plunged
Away, at a run. It was like a smack in the mouth,
It was like being unmasked as wicked villain in a detective thriller -
Are my grey eyes gleaming forbidding dangers? For the rest of that party
She hid from me. I felt far more threatened, than threatening,
I felt that the site of my own narrative
Was populated by such terrible myths, no-one dared listen to my witness
Yet when I was in the psychiatric ward, my impersonations
Of the nurses, made all the other patients laugh,
We scrumped apples from old orchards hidden in the woods.
Where’s the terror in shared laughter? The danger in fresh-picked apples?
What horrors lie in cheering up unhappy people?
Are these so dreadful they scare children, frighten adult people?
Must the mauve bruises darken on my cheek
Because some individuals in my community are shocked
To realise a schizophrenic’s among them when they snarl schizo
Hurtfully, meaning nastiness? Ears peeled like Robert Burns’s child,
Noting down their words?
That’s the teaching/Labour party community, nothing false or pretentious about her fright, it was spontaneous - her “medical information” came from thrillers and horror movies!
THE REAL ACTING FANTASTICAL
(group psychotherapy can be unintentionally funny)
Knotted tree branches prevent cloud splodges
Falling on our heads, strenuously netted, darkly nude
They manage to hold the sky up. This declivity leads
Downwards to a brick front you come right up against.
as too-clean windowpanes watch you, they gleam the outside
you coming downwards through it
Right back in your face at you (like this is meaningful
to real red flame Doctors of Psychology) The Rules in here
One man (one of us patients) came right
In the Doctor’s face - figuratively - with crude disagreement.
Male challenge - inaudible but unmistakable - male weightiness
Poised ready for dragging each other into tug-o’-war
(patient forcing the Doctor to engage on those terms with him)
Icily side-stepping, the Doctor froze his eye-gaze to
the middle distance high above his opponent’s head
His point made, it was followed by distinct - inaudible - pretence
This didn’t happen. Oh! A knockout blow!
This way we got it, cryptic (as in crossword) rules: the clues were
To do with egos!
(Cue the BBC Radiophonic Workshop theme music) the Doctor
Was the Time Lord (boss) his science, his erudition, would enlighten
Our lampless labyrinthine chaos. (Yeay! We’d shut up, we’d
Believe everything he said)
A cigarette afterwards was my carrot, the reward I got
For an hour of sitting in that inscrutable building.
If you’re ill mentally and/or physically the rules (overt and covert) have to be worked out. A happy outcome (an alive one) depends on it.
OUTPATIENTS SEEING A SPECIALIST
t’s atmospheric, sunless. The brickwork mortar erodes, sucked out
by rain, the flaking window-frames need paint.
Noir as ancient, avant-garde films, but smoking is forbidden. Any joy
has been totally wrung out, squeezed dry. Thinking in here is frightful, ‘cause
we’re told this is a hospital, it will get us well! The doors are fastened
behind us to keep would-be patients out. Once one unfortunate got in,
smashed toilets, broke computer screens. Every windowpane in the place
got like ice shards, like gravels on poisoned brownlands. Now, the receptionist
peers at us through fish-bowl glass, reinforced by netted wires. The TV’s
bolt-locked high up. Today an elderly (non patient) father tries to hush
his daughter’s spasms, her ejaculations, she is badly ill but she has to wait
for two more hours of random TV programmes, nothingness and stares
from everyone less urgent. She can't be seen earlier
legitimate-appointment-patients count for funding, not emergencies,
priorities are threateningly noir - don't try being iller -
from normal members of the public, given appointments, in here we become
figures trapped inside a Kafka nightmare. Guiltily, we see ourselves as giant beetles
scraping enormous carapaces against doors and windows we can't get through.
Darkness is whitening into daylight. We don't know what we've done, nor what
we're guilty of ...
This is the fudging, grimly funny sort of thing that goes on everywhere, and most people mean well, they’re defensive and unhappy about things they can’t help, in a given situation. I would be, we all would.
When I came here the Warden said: “Roxanne,
this house isn't really appropriate for you, but... “
Today I came down into the kitchen and put the kettle on,
got out a teabag and a mug, in front of Robert
and Robert took a pint glass, cracked in and beat two eggs,
then poured in all of the milk. I said: “Robert,
I need a drop of that milk for my cup of tea.”
and Robert gave me his green-eyed long-lashed stare
as if he was even madder than he is. He does this.
I cannot make Robert less selfishly mad, or more considerate.
So I shouted: “Robert, I want a drop of milk!” and Robert stared and said:
“You're mad you are.” And Daphne joined in with:
“Poxy Roxie! Poxy Roxie shouting!”
I hate it when they're this stupid and unkind. I know they can't help it,
it is insoluble. My brain starts tearing, blood pours through my skull.
Then Daphne bobs in my face and shouts: “Poxy Roxie wants a cup of tea!
Poxy Roxie wants a cup of tea!” shaking her red-tinted elf-locks.
She does it because there are no nurses so she can do whatever she likes,
I got so angry I wrapped up Dolly and took her off up the market.
I know the Warden will sort it out,
she'll treat me as if I was just as mad and stupid
as Daphne or Robert. She won't see
the human pattern in my wings, just the flying creepy-crawly.
Every footstep jarred and hurt the pavement, every dark-branched tree
took on that immediate urgent meaning, that distracting symbolism
that means you cannot look, so many messages are coming in -
tears running down my cheeks because I hadn't had a cup of tea -
crossing the road was scary, too many tears and cars and messages.
But even a doll needs love and comfort, just like me,
so when we reached the market safely I kissed and comforted my Dolly.
The road was choked with stalls, bright lights and people.
I kept having to stop or we'd have gone bump into shopping trolleys.
We threaded our way and reached our special fruit and vegetable stall -
it's our own especial stall, it isn't for Daphne and it isn't for Robert.
I showed Dolly its bright lights, pineapples, pears and red and white potatoes,
spinach bundles, southern peaches, cauliflowers all crisp and green and white,
and a rattle of walnuts, an avalanche of Coxes Orange Pippins into the scales.
We just stood quietly out of the way. The servers yelled:
“Six pounds a pound bananas, eat here or take away!”
One said: “Hello Roxie! Got your Dolly?” “Yes Mum seven grapefruit?
And four pounds of onions, two pounds please!” “Oh don't cry, Roxie!
Had another row in the house?” I couldn't help crying more. They said:
Not now Roxie. We're busy.” It never goes right for Roxie and her Dolly.
There was a new bloke serving, they explained, we heard them all:
“That's Roxie. Look at her, nursing that bleeding doll!
They've had another row in her halfway house.” “Hurt you, or damage the stall?
No mate, she wouldn't harm a fly. But you have to laugh.
If you didn't have a laugh you'd go fucking mad yourself!”
I saw this, I heard it, none of this is invented - Roxanne really was cuddling a doll like the worst sort of cliche - I used Roxanne as her name because the Sting and Police song was running through my head. (The despair of the song not the scrubber innuendo)
… AND THE DARKNESS KNEW IT NOT
She had a stony, treacle-dark and arrogant eye,
Demanded “Have you problems? Tell?” alarmingly
I was “That sort” and vulnerable, she would arbitrate
Despite how I felt, she was the only nurse I’d got, I must submit.
She thought, as nurse, she could be rude as she liked, if that provoked
Antipathy, she didn’t care. My feelings weren’t important.
She flaunted her lowbrow self-conceit, obtrusive as a burglar, used, and blocked
My lavatory. Left me to break up the wadded paper and her shit.
I should give thanks, said her manager
To have she of the treacly gorgon eye,
If I’d had friendlier nurses previously, I had been lucky!
He wouldn’t see my point, it was as if I’d shone a light
Into darkness, so he’d asked, cunningly, what that meant, put into dark terms?
He added, the nurse herself would visit, I could put her right.
I cried in terror. Locked the doors and drew the curtains
So she couldn’t look in when she came, and turn me into stone
My double glazing would be no protection
If she pinned me with her violent, dark as treacle angry glare
She didn’t practise medicine, she practised bullying.
My husband put it to her manager my needs came first
That touched him, he felt guilty, wincing in a shining recognition,
Forced, against his will, into his eyes. He backed down, sought the comfy darkness.
If this type of person thinks s/he can bully patients to get the work they’re employed to do, done, they cheerfully will (and do all the time).
NEARLY KILLED BY NEUROLEPTICS
Of February 2013 and early March
I recall nothing. Not a horrid
Nothingness sensation, Hell as Jews promise,
But a blank. I wasn’t anywhere. As if unborn, or dead.
A bean-counter white-bearded deity sits up there, checking
Us in to Eternity? None of us believe that silliness, play
The game imputing literal, semi-masticated
Stupidity to others, viewers, everybody else! The curious will pay
To watch and hear you, if you do it cleverly,
Or funnily enough to be elite, have a right old laugh
At all the rest.
But getting back to me, NHS employees thinking
Cleverly, deafing out ego nonsenses, brought me
Back to redfaced bedmessing life. One nurse was bossy,
Reproachful when I took risks necessary to recovery, then asked
If I believed in God? That’s how she put it,
Meaning unexpected pleasures, like visitors, like sudden
Smiles from strangers, or like clever, elegant
Ways of summing things up, in words or maths, or spotting
The killing was being done by medication, and like
Warmth, being alive in sunlight. Neuroleptics aren’t missing
Bits of brain needing to be sewn back in, or magical. I’m
Not loose, needing to be tightened up, nor will
I work easily if oiled. Enough is known
To stop people like me dying -
Keep on with that sort of thinking! I cried,
So glad to be alive. Because of all of this, I told the nurse I did.
No-one knows why NEUROLEPTIC MALIGNANT SYNDROME (NMS) happens. There is agreement on how to identify NMS, and how to treat patients so as to save their lives - stop giving neuroleptics at once, correct electrolyte balances, rehydrate etc - I’m alive because of that.
MENTALLY ILL PATIENTS SHOULD ALWAYS TAKE THEIR MEDICATION
Generalising moonlit silliness, making
rubbish a “fact”
is stupid, so we do it. Like pretending Vapes
are toxic, because they’re as right stuff as cigarettes.
“In fact” a neurologist crossing out
listed “she-must-be-given” anti-psychotics in
thick pen ( I was spark out in Intensive Care)
made a real difference (to me) it saved my life.
Brought back from black-as-soot unconsciousness
to hospital noises, lighting, blackbirds wildly
singing, sunlit at post solstice dawn,
as the anti-psychotics ebbed from my blood, I started
being alive again, all this was mine, I was a human.
It’d kill me if I did, yet one of my siblings still expects foaming-at-the-mouth axe-waving dreadfulness of some sort, because I’ve been taken off neuroleptics by the neurologist, and this has been approved by the psychiatrist. And I’ve never axe-waved in my life, or dribbled bubbles from my mouth since I was a baby!
Googling NMS spurts fountains of contradictions, received ideas are repeated like magic spells, and evidence cited which indicates all sorts of different things to explain NMS. As clear as mud, eh? Some authorities insist it’s very rare, others (neurologists and psychiatrists) disagree. They point out lots of misdiagnoses, also that evidence taken only from in-patient records skews and makes false the findings. What of evidence including records from the large numbers of out-patients?
NMS is said by some to be very common. Taking any brand of dopamine blockers, ie neuroleptics (also known as anti-psychotics, or major tranquillisers), can put any patient at risk. With close and careful monitoring, very low dosages only increased very gradually, is considered a safer way of treating patients, and protecting against NMS. Not every medic, doctor or consultant, is a fledgling saint - we’re all human, some of us can be nasty!
THE CONSOLATIONS OF SOME TRAPPED-BUT-FREE CONSULTANTS
Her soul sits in her imploring, frightened eyes
fixed on the psychiatrist’s face:
s/he, the consultant, is important, powerful enough to choose
whether, or not, to appear to notice why this human patient
needs help. She’s staring between as-if-iron bars, caged by
anti-psychotics, which stupefy her brain, her machine for thinking
so she’s incapable, without that brain-bit fountaining language
of explaining what is wrong. She hopes you, as consultant,
know anti-psychotics do this. Hopes flashes of guessable, white brilliant
lights will pass between your eyes and hers, in comprehension!
So the awfulness will stop! Like being at university, finding understanding
after years of idiots who can’t or won’t. But having power gives a buzz, some
women and men find thrilling zooms of electricity along their nerves, enjoy
knowing their safety when being a patient isn’t safe. They play impassiveness
objectivity, slamming shut the inhuman stupefying locking mechanism
by being deaf, pretending incomprehension when they know it all along. Letting
that deadening expression, in their whatever-coloured eyes snuff out
her eyes and soul, increasing her dark terror. Because she doesn’t count.
I’ve already been severely ticked off by a lordly “friend” for daring to suggest some consultants (psychiatric ones) can be bastards, having met several who are. Generic abuse, he called it, not reading
any - it’s bloody infuriating being told what I’m thinking, by buggers who never listen or hear what I say, “for my own good”!
Patients with Parkinson’s disease can suffer NMS lookalike syndromes, some authorities insist these are the same thing. Swapping brands of neuroleptics can trigger NMS (Pharmaceutical companies withdraw unprofitable brands slyly, suddenly these brands become “Unavailable” so patients are forced to swap to available brands) this happened to me. Dopamine levels decrease with age, older patients are vulnerable, as the neurologist and doctor in charge of Intensive Care realised. My symptoms were classic NMS, they’d been told only younger patients suffered it - good job they were clever enough to trust their own cleverness and the evidence of blood tests and their own eyes!
THE BLIND LEAD THE BLIND SOMEWHERE
Half-seen at night, massed leaves dark heaps,
or intricate bare-twigged basketing
are shown through a back door, staring
wide into blackness. Hinged, square-edged
but incapable of shutting by itself,
like locked-up, super--glued ill heads
doctors who do, or don’t, prescribe anti-psychotics.
What else can we go on?
Sky high blood pressure, terrifically increased creatine levels, disrupted electrolytes, dehydration, fever and confused or catatonic state of consciousness have all been noted in NMS patients. No one understands, yet, what these scattered pieces of a jig-saw puzzle mean. How are they to be connected, or fitted together somehow, what amazing picture are they going to reveal to us when we realise how we can connect them?
Sir (George) Lindor Brown by Walter Stoneman bromide print, 18 November 1946 image size: 135 mm x 98 mm Commissioned, 1946 Photographs Collection NPG x166160
This is my great uncle, Sir Lindor Brown. He was one of the physiologists who discovered chemical messengers like dopamine, and the Physiology Society still run a prize lecture, (www.physoc.org/gl-brown-prize-lecture) in his honour. (He left money for it when he died) Perhaps one day it’ll be awarded to someone who can describe how the jigsaw puzzle picture of NMS can make sense, and what exciting ideas it indicates for future physiologists, neurologists and psychiatrists to begin their doctorate research about. What unfathomable oceans stretch out before us?
WEIGHTLESSNESS IN STARLIGHT (ZERO REST MASS)
Blinded by suddenly switching electric lights on -
Eye-pupils enormous, dilated to watch fireflies -
Aeroplane lights bobbing, or interrupted in sub-fusc
Flight through dark cloudiness and thin
Dark arrangements of bare cherry branches
Close enough to my window for further-away lit planes to be tiny
Fire-flies, fragile and tossed through the flail of the wind-
Swung naked cherry!
After 20-odd seconds of pupil-shrinkage, I can see me,
100 watt shinings show me. Alive, that’s nice - once the saboteur-gripping
Neuroleptics wore off!
The million systematic I-activities, my brain’s strange
Feedback mechanisms have slowly resumed the Rolls Royce purr
Of engines running sweet, glitchless finally. I (the extrapolated, cumulative
Result of lots of I-making circuits) can go on - after that rude medication
Interruption - being me, watching plane lights circling
In the air traffic controllers’ stacks, permitted to lose altitude
Against the black starlit backdrop, step by step, queuing to land
On earth, when it’s their turn.
Stupefaction is done by neuroleptics paralysing your identity-making brain parts, they cease to function. After just under a decade of taking them stupefaction becomes gradually noticeable - previous to such a time, neuroleptics shutting up the Voices is delightful - but slowly you begin to lose all sense of being yourself. With no sense of self inside your mind, you also lose your registers of realness and what’s real. You have to rely on feedback from other people, and your memory is numbed too, recall of you being yourself no longer exists.
The results are terrifying. You have to pretend, you have to fake being a real person all the time, adjusting according to how you think you’re being seen by other people. So you’re constantly threatened with extinction. Your blood pressure (BP) goes through the roof! - Mine would set BP monitor alarms off at the doctor’s, and my terrible fears of extinction kept me on high alert however long I sat on a chair outside the doctor’s room “to relax and calm down”. My BP remained high in the stratosphere - the doctors and nurses I saw were puzzled because this kept happening but so far, I haven’t dropped dead at their feet!
Stupefaction and its associated paralysis of brain functions makes any spontaneous description of itself - of stupefaction - impossible. You’ve lost the ability to string together the thoughts-into-words, but hope, of kindness in doctors, is unquenchable. Feeling desperate, and hoping, I made appointments to keep seeing one particular doctor whose sense and kind way of expressing his sense made me hope, groundlessly, he’d somehow get rid of the stupefaction. Of course this looked exactly like sad post-menopausal git with a passion for this particular doctor, to everyone who worked at that Health Centre. Humiliating, stupidly and grimly funny - that’s one muddle you can walk into when stupefied! Bet I scared him stiff.
Sky high BP is one of a cluster of symptoms classically indicating NMS, a recent change of brand of neuroleptic is another indicator, and of course being on neuroleptics in the first place. Psychiatrists had advised on neuroleptic brands in my case, but the GPs I saw seemed not to have been made aware what to keep eyes open for - the psychiatric department in our local NHS Trust hospital can be shambolic. If I hadn’t nearly died, and been taken off neuroleptics by the neurologist, I’d still be stupefied now. Being fed manure and kept in the dark is fine for mushrooms, it’s very negligent and unhelpful of a psychiatry department to treat GPs and patients in that way.
Stifled by smiling faces always asking me
“Sure you’re OK?” - like it needs asking
thrice ‘cause I’m schizophrenic, I go out to range streets
that’re hedge-shadowed, and streetlit-strange
alive, teeming with kids, loud cries bounce off
yellow-lit housefronts, walls, where they write
(formulaic) about their loves and hates
I shrink from confronting the overbearing, the personalities:
my self being punished because it is separate, and is a self.
I can’t withstand louder voices knowing what’s better
for me, telling me, never hearing a word of mine because
they don’t know how to hear: -
not about new, strange stars,
gale blasts of difference! Belted in my black coat,
uncreation and dark nothing lie behind me and in front, and this
brief streetlit minute’s safe enough because it’s streetlit,
because I part-own the house, and can go back to it.
Offers of company and advocacy in medical appointments filled me with dread, while stupefied, of overbearing personalities telling me what I feel and think. Telling me what’s needed and what ought to be known, and never bothering to listen to me and hear what’s really frightening me silly.
This stupefaction is known of - I’ve seen it referred to when I’ve Googled sites - but never as seriously as it is catastrophic to those suffering from it. I feel like one of the animals in some experiment - next time I’ll be the control animal and some other poor bugger can swallow the active tablets! (Hem and I can think of a few professionals I’ve encountered that I’d recommend to be said poor buggers. I’d call this proceeding scientifically, and in a wholly objective manner)
Gift of the gab comes with reading English Language and Literature at Oxford - what d’ye reckon won me the place!
WHERE THERE’S LIFE THERE’S HOPE
Street after street laid down thick
As oil paint, this pre-dawn, on the skin of the land
Glittering frosts threaded black silhouettes, stuck-in
Orange radiant light-bulbs, in Drapers’ Fields, this century
So many people who haven’t been born as long
As I have, must take short cuts, never listen:
time ‘s money, it’s an emergency, they’ve got work
To do to live.
Pre-dawn on the ‘bus top deck is an emergency,
It always is. Magpies and blackbirds are preparing the band
for sunrise, rehearsing beautiful defiance songs aimed at
every other bird else, they’ve got to live.
And want to live. Like us.
It’s lovely now I can use my brain and think and write again.