Alice Wore a Red Dress

LIKE A POLITICAL PRISONER BUT UNFASHIONABLE (ALSO QUITE THE WRONG SORT OF VICTIM)

Tramlined told “This is life – for schizophrenia sufferers –
A box of flickering grey pictures is strapped, monsterishly
To your head, in front of your face, so this hero/wicked
Simplification is repeated and repeated, was all
Your eyes could see.

No other way of seeing schizophrenia
Is allowed to medics, or the public, either.

No sunlight, no leaves
For sun to shine through. No humanity, if people saw
The yellowing label pinned through you, and affixing you, they gave
frightened robotic stares, ran off, and didn’t laugh
About it with their mates, for hours after, ‘cause
It was too personal, it was far too horrid.

The medicine, after decades unmonitored, becomes
Your mental lens,. Shows greyness, as ghastly as it can be when
Consultants are NFI, and no-one likes working for them (the under-staff
Do all the work, so get compassion burn-out. Pray, cry, resign,
Or harden into crusted concrete.)

Intelligence and affection wither, starved of the light a working
Brain provides. Become dust in a corner the contract cleaner
Overlooks, and anyway hates this job.
…………………………………………D’ye tell, d’ye dare hint
You’re slowly being ironed into a flatline? You so dread unhearing
And being fed shut-her-up platitudes, you don’t. And looking out
From their eyes, the grinning reason undermining
Any confidence you ever had, you would be heard: “Complaining
About your Consultant is A CLINCHING SYMPTOM THAT YOU’RE MAD”.
………

PASS THE SOAPBOX – IT’S MY TURN TO RANT!

…..1. The schizophrenia hasn’t gone away. The medication I’d taken for decades, and that was poisonous to my system (everybody’s different) has.

2. So how do I package getting slowly better, and, achingly gradually, like myself again? Litigiously? Do I sue the NHS? The UK government? (either brand name will do) My Mum and Dad for feeling fruity when they did and conceiving me?

3. Recovery doesn’t happen overnight – red sunrise plus swelling orchestra.

4. Nor is it like switching the light on/off

5. It’s slowly recovering an intricate, hugely complex and interconnected webbing of mental faculties/abilities

6. The lot slowly returns the sense – and outward force – of being a self. Of one’s selfdom, which

7. Gives back, bit by bit, one’s ability to explain, in real terms. To be real, in the first place!

8. And to make oneself heard – you need the force of a self, a personality, to put any point of view – if your personality is numbed and senseless, it’s like nobody’s there although the lights are on.

9. If one’s personality revives, it gets back that positive quality, that realness, that puts you back inside yourself, and switches the realness back on in everything and everyone around you.

10. Your memory warms into life and comes online again – shocking and surprising you, but true and real, and comforting: you’re you, and can recall yourself being you – you really are you!

11. It all comes back like spots of rain, starting sporadically but pitter-pattering with increasing (and most reassuring) steadiness.

It’s nearly 4 and a half years since a neurologist, and the doctor in charge of Intensive Care, saved my life by crossing out the listed medication-she-must-be-given at the end of my bed. They’d worked out what was killing me – Neuroleptic Malignant Syndrome – thanks (and God Bless) to them!

I still blush with shocked surprise as more of the real me wakes up, and I see just how much of me – intelligence, personality, executive capacity – has been blotted out of functioning for years and years. I’m humiliated, knowing (now) what my husband and kids have had to watch happen, and let happen, because Consultants insist medication should be taken for ages. Regardless of whether it is helping, or is not, is actively and dangerously harming a patient – not every patient, none of us are identical industrial products coming off an assembly line.

Disgusting rudeness and lack of courtesy is shown by some Consultant not just to psychiatric patients, but to their relatives as well. Like families are tainted by the loonie? Others are brilliantly shining lights of cleverness, care and courtesy, by contrast, taking infinite trouble to explain what’s prescribed, and why. Happier families – genuinely so, not fed manure like rosebeds – inspirit ill people, which helps the sick regain health.
….

SCIENCE PLUS A DASH OF MAGIC – WE’RE ALL HUMAN!

…..

1. Why is it “scientific” to deny the existence of anything unproven (as yet)? Or to jeer at “anecdotal” evidence? (Good job Jenner didn’t)

2. Call things “unproven” by all means. That is a different attitude entirely.

3. “The oceans and seas contain no viruses” was the received wisdom for years. Then a scientist had a look – the oceans and seas are teeming with vast numbers of previously unknown-to-us viruses. Seawater’s so thick with them it’s almost virus soup!

4. Assumptions about labels (without examination first) is sloppy as a method: all schizophrenia sufferers are morons?

5. So investigating schizophrenia has to be peering through (protective) glass darkly?

6. Anything we say is (automatically) to be disregarded because it’ll be false? Requires bullying correction? (We’re nearly all the way to Madam Whiplash already!)

7. Never lighten up, when talking about schizophrenia, but insist dark hints, dark unimaginable implications, are “medical science, objectivity etc”

8. Disbelieve you are, by being gloomy, spreading misery. Call it “realism”

9. Disbelieve there are intelligent sufferers – “schizophrenia sufferers are underclass” – so thickos, ill educated and powerless.

10. Try surreptitious beancounter bullying: “What’re you TRYING to say?” “I’m not sure what you mean?” “You’ve degenerated markedly since Oxford/your teens/A levels”

11. Never let yourself realise that none of the above bullet points are caused by schizophrenia. None at all, they’re caused by how you, and everybody else, CHOOSE to view the condition.

12. Research done in penumbra, in half-light, semi-darkness and inertia of mind, prevents intelligent recognition of what is going on in other (intelligent) minds. Numbs genius and casts such shadow over discoveries-of-ways-forward, they cannot be seen.

13. Short-circuiting one’s mind as a starting point is unscientific stupidity. Infuriating for people like me – some editors do it, some acquaintances do – it’s humiliating and frightening to be gaped at, a remark replied to by stares, letters from me to be opened “just checking” before being given to the person addressed.

14. All teachers know kids labelled – by self or others – are effectively having their educational chances killed right then. It still happens. It’s known as a self-fulfilling prophecy, like the last bullet point I made, eh?

15. Deciding what you’ll find, as you sit down at your desk and start looking, is another self-fulfilling prophecy – it’s interesting just how humans can colour what they see, by deciding what colour to look with, in the first place. Bloody scaring and infuriating, though, to be on the receiving end!

………

ANONYMOUS FACE

…..
It’s when dark-horror-nightmare
thriller plotlines get mistaken
as providing psychiatric info that is true,

reliable, that I hit the roof. It’s not just pub
bores with bullshit percentages I mean, it’s
the general everybody getting their facts

on back to front and upside down
and effing wrong then acting on their errors
that it gets irritating. Mistakenness

turns real, ideas veer
turning like weathercocks, truth’s
corrected, and replaced with its opposite.R D Laing

wrote romantic literature on schizophrenia,
pretended it was science – I didn’t
mind being hippyfied, given a beautiful

but fated starring role. Mind, I was
disappointed afterwards. Not only
demoted, but shamingly made out

to be as thick as pigshit! Years back, I’d earned
a good degree from the University of Oxford –
I mean! Public beliefs, like in

emphatic medical 1-rule-suits-all has already
nearly killed me off. It isn’t what
people actually think that’s said aloud, either,

what’s heard that’s said is only
what they think ought to be. And sometimes
this gets bloody scaring,

……..

No-one else can get
what’s inside people’s heads –
so near, yet secret as a shadow’s back

Words tell private
stuff, to those who know
what their weights, and qualities express. If not

no-one can get
the blinding keyhole lights
of joy, the pitch-black dreadfulness that’s meant.

Going across to join
the comfy cronies’ side, requires
a red traffic light halt to any listening,

a jammed-on brake
Incomprehension of some ideas. The
subsequent betrayals signal you’re the “right sort” to belong.

From now on, refuse
to hear desperation
shouting, smashing shaving mirrors, begging! This

sort of comfyness stares
In horrified disgust
if it overhears it said aloud, some awfulnesses

are so private, the
Whichever Party
cannot touch them. This incomprehension means

they’ve decided, voicing these sentiments indicate a pack of bigots,
wife-beaters, racists, ignorant no hopers, drink in this pub!

……

Darkness with New Moon (A Tongue in Cheek Look at it through the Public’s Dirty Glass)

…..
Secretly earth’s gravity
pulls at that sun-reflecting, white
satellite (the moon) It tugs back, stirring
earth’s molten interior as if its own
gravity was an unseen spoon.

I know this phenomenon this way,
(you’re stupid if you disagree!)
supercooled (it is, at room temperature) window glass
stretches thin against dark air:
………………………………………“Through a glass darkly” – was
a ‘60’s chat up line complete with “significant” eye stare
(know what I mean nudge nudge?)

Some religious people’s generosity gets lumped in
with stingy sorts of christians, indiscriminately cat-called
“Idiotic, superstitious”.

I found my internalised grave horrors, shockingly
made visible when I read, online, that diseases:
……………………….like bipolar, schizophrenia,
might be caused when, in very tiny kids, a hitch occurs
in the stem cell mechanism for switching off one parental gene
and switching on a gene of the other parent’s. The resultant
altered biochemistry is harmless. Like a not working brake light.

Not – I stared up at that white, cratered face
in startled recognition of how I’d been knowing
my birth and my sisters,
………………………….Did I really really think we all had
666s devil-burnt across our foreheads?
………………………………………………………Know of our births,
as if each girl born brought dreadfulness, and dark eclipses,
Hammer Horror frightener-music crashing in
the midwife’s eardrums?
………………………..Bloody hell! No wonder I’ve been sad, been filled
with self-disgust – we’re people! People, just
like everybody else!
………………………………..A granite tombstone, dense
with mica, rolled heavily back,
……………………………………….it freed me, let in light!