Only Little

when you grow up
you won’t grow up
you won’t
know to stop eating sweets.
when you grow up
you still won’t know how
or talk
or use your feet

when you grow up you
won’t want to wear trousers
or ‘sit still and stop making noise!’
and when you grow up you’ll still be playing
with cars and funny toys

when you grow up
you might get taller
but you’ll need someone
to do your hair
when you grow up
you’ll still need teaching
and want someone to show you what to wear

when you grow up
you won’t grow up
you will only need new shoes
you’ll still want
‘well done’s! and ‘here’s a gold star’s!
but there’ll be no one to give them but you

when you grow up
you won’t know what your doing
but you’ll still try your best
you’ll hurt and you’ll curse and imagine you’re better
or very much worse than the rest

when you grow up
you won’t grow up
so remember, because you’ll forget
you’re a star and you’re cute
and deserve lots of hugs
and your pictures
belong on the fridge

when you grow up
you won’t grow up
and you might not stop being afraid
but when you grow up
you can mess it all up
but you’re still small
so it’s okay

Mummy and Daddy were Wrong

sweet
there is far more
to you and i
that remains
The never to be said things stay
like hard chips
in your bruised black petrified heart

beneath those warm self less eyes
self deceit, skulls
and flashes of red
when the magic takes you
And I am the magic.
and the violence in your blood
cuts us both

I want no more apologies from you
my poor misled beast
you tie yourself forlorn to a tree in the rain
repenting your nature
yet still
Flashing your Fangs

i cannot be tender amongst you
nor safe
i cannot be heard by you
i cannot be redeemed
nor true
only ashamed

i do not ask for forgiveness
for my turned back
for my fading fury
my silence
my pity

i never left you
but i am already a stranger
there is poison in your blood
you wield it like a weapon
I hope
I will not let you
Hurt Us
with it any longer

I don’t hate you but you still suck

i have no words for you mister
stomping on the ground about you
like an ageing impotent bull
hoarding its cows

a my way or the high way
i pay my taxes
bloody foreigners
shut up or put up
comedy caricature made flesh

a caveman in a new suit
grabbing at life by the hair.
raging at distant suns
that remain brightly nonplussed

a kamikaze
pull your teeth out
scream until you are sick
boy child

each day catches you
unawares,
somehow.
Shuffling your feet
and staring at your toes

a toddler picking up
a ladybird

you have taught me
how corruption takes form from its roots

you,
wide eyed and naive
jumping at shadows
hands over your ears
clutching your ignorance close to you
like some
beloved
disease

a drowning man
who finds rope disagreeable

you don’t understand the question
so you are handing the teacher over
to the authorities

and as much as you have tried
to make me your pet
when you open the door to my cage

How to make Chronic Illness Better. aka when You Can’t Help – Stop helping. 

When you have a tricky problem, you can often get some really shit advice. As a chronically sick person, this really applies. Here’s some shit advice I’ve got –

 ’think positively’ ‘take drugs’ ‘go for a walk’ ‘go to a support group’ ‘do yoga’ ‘get some sun’ ‘change your clothes’ ‘push through it’ ‘change your attitude’ etc etc

The reality that produces advice like this is so vastly different to the truth of the situation, that it becomes harmful to try and assimilate it into a sufferers (eg my) experience

Because yup, I’m a normal person conditioned to accept and take well meant advice given by well meaning people. Not a stubborn twat who argues with all your ‘good’ advice. Because that’s a common misconception, and some people get really mad at you for it.

It serves to remind me of one of the main tenets of chronic illness – you don’t know what it’s like until you’ve been there. Or ever heard the one about another man’s shoes?

It also perpetuates the loneliness of this condition – they recommended ‘talking about your feelings’ but the sharing of experience just does not work if you are speaking to someone who has not experienced the same. In fact, even a recovered sick person loses sight of what things are really like.

So talking to anyone about the realities of what you are going through can be a lonely, painful, alienating and downright shitty experience.

Wallowing or drugs looks like the only route out here…

But that sounds terrible! How do I fix this?! How do I make it better?! What’s the solution?

Well, you don’t.

Stop trying to fix things. Stop trying to make it better. Stop searching for a solution. That goes to sufferer and helper.

It’s seems counterintuitive but…

That sufferer has seen all the doctors. Tried all the meds. Gone through many more years of the same thing and has way more experience and knowledge of these things than you do, MATE.

Those painful experiences lead to painful feelings. We’ve got to go through and recognise and feel those emotions, because denial and delusion are the opposite of healthy. This is reality, and whether you like it our not, these things aren’t going away, at least no time in the near future, and that’s the way it is.

Because reasons.

I’ve found that people don’t like that. They find it too painful, too disempowering to accept that feeling shit, feeling pain, is the only way forward. They don’t like things being messy, they want to tidy them. There must be a quick fix, because being broken isn’t something they are willing to accept. Because…well many understandable, human reasons (that is a whole other article, which I will write soon)

But being alive and being in pain is part of it. It’s a trial of endurance. This is the way it is and these are the facts.

So be brave, and put your tool kit away.

This thing, the illness, the issue, it’s a monster. If you think you can fight it with your weedy little self, you are very much mistaken. Faced with chronic illness, you’re a chump, Chump! You’re nothing. Nothing! And that’s okay.

A hug, acceptance, a recognition of achievements, a bit of encouragement and a whole load of faith in the person is the bonafide best thing you can do. Again, that goes for sufferer too…

At least that’ll do it for me. Oh, and all this with love. Lots of love. Lots and lots of it.

Ahh.

That’s better!

I’d Rather

singing was more like my sound

but for my sewed up lips

and demons crawling in my ears with

sticks

find my fingers tied together with

razor wires and toes studded with

small nails that

go in

find me lost in here

but standing

and awake and proud

and eyes burning away in

dusty wakened air

and shame on me for

not waking at 7am

So they tell me

I am less than I should be

So they tell me

I am so much more than you

So they tell me

How to Treat a Chronically Sick Person

I have a chronic illness. There are good times and bad times. My normal living cycle goes like this –

  1. Beginnings – Alone with nothing because that’s how everyone starts out!
  2. (few weeks if lucky-) Go out! Make friends! Meet contacts! Start work project!
  3. (few months-) get sick
  4. lose friends, lose contacts, work project fails/ends
  5. Start again from nothing
  6. Repeat at least twice a year for 10 years and counting

In there is a cycle of a crippling feeling of loss and its mourning and recovery period, as well as physical pain, loneliness and PTSD, as well as watching your loved ones suffer and experience your pain alongside you, in case we needed some oil and vinegar on that shit salad.

Chances are, if you meet me, my life will be a mess. I will be a mess.

Trouble is, when people see something messy, they get a prissy little urge to tidy it up. You start to get the ‘helpful’ advice – get a daily routine. focus on the positive. it’s going to be okay. join a club. go out make some friends. go for a walk. get out more. talk to someone… Finally! Decades of incurable illness fixed by a few facile words!

Here’s a take away lesson – Don’t tell me to get a daily routine. Don’t tell me to focus on the positive. Don’t tell me it’s going to be okay.  Don’t tell me to join a club. Don’t tell me to make some friends. Don’t tell me to go for a walk. Don’t tell me to get out more. As for that last one, well I’m talking to you aren’t I? Don’t tell grandma how to suck grandad’s fucking balls.

A better idea of how to ‘treat’ a chronically sick person –

recognise and admire the rare immutable human strength and against the odds perseverance

of someone who faces immovable, crippling obstacles each time they draw breath. the same things that would break most people into tiny pieces in week.

The best, most comforting, empathetic and truly loving thing I’ve had said to me about my illness is this –

‘jesus, I don’t know how you do it Sarah.’

Chronic health Condition not self sabotage

I went to see someone about my chronic health condition

She was great

but she mistakenly mentioned that there was self sabotage at work

I want you to imagine she was saying that

To someone with a tumour

That’s it. There we go. Now you understand.

Lesson – *Don’t try and tell someone their physical health problem is in their head*

POW

I despise

the life

I am forced

to Live

The people

I am Forced

to Live

it with

And the body

I am forced

to Live in.

It’s a prison.

And I admit it

It’s true

I desperately

Want to escape

And have scratched several ingenious plans onto my cell walls

I guess I’m going

To Hell For Some of Them.

(this is a reflection on being chronically sick for 10 years and counting)

Moronic

i always keep on smiling
though i don’t know what for
if I’m nailed up on the ceiling
or curled up on the floor

i tried use the handle
but this big old door is locked
there were people on the other side
but they’ve gone away and stopped

don’t give me holy holies
or ‘be good because one day’’s
i know it’s temporary
and all this will go away

but ill always have the memory
of 4000 burned up nights
of people staring at me
wondering if my head is right

if i ever mentioned to you
i was happy then I LIED
so ill have another biscuit
while i await the other side

and even when I’m better
and i wake up and i smile
it’ll never be enough
no where near. not for miles

because I’ll always have the darkness
of 4000 rotted days
of people staring at me
and forgetting all their names

of the wrinkles starting about these eyes
and all the pent up screams
and though you smile and me and love me
you can’t tell me what it means

but now I’m waiting for the knock
on the ever present door
when they burst in, they won’t explain
what this was bloody for

you’ll see blood and hopes and body parts
behind this fucking door

but she’ll always keep on smiling
though she doesn’t know what for

(that was about being chronically sick for 10 years and counting)

Inches

I don’t hang out with you no more
Your words were too much
For my little ears
They echo of
Bad eyes
In dark caves

I don’t want to speak with you no more
I’m done with working my way
Through broken pieces
You are spilt milk
And frozen smiles
And bad melodies
To me

I don’t want to hang out with you no more
I’ve grown
And squeezing back in by your side
Would only hurt me now
I don’t want to speak with you no more

STAR

(This is about being chronically sick for 10 years and counting)

I’m sorry i didn’t mean to want to
but things happen sometimes
and i ended up like this

don’t look at me with tears in your eyes
i know its contagious and i make you want to die
but crying for me won’t bring me back to life

i never wanted to think it
so don’t be mad,
but here we are
and even if I go
I’ll always be your star

The Dolphins in the Fridge

I meditated the shit out of you
But i guess the message didnt get through
All my chakras are turning blue
I don’t know what that means
But I’m eating more tofu

I’m going vegan
Apart from steak
I’m eating more kale now
And all my cheese is fake

Incense gives me a headache
But I composted all my old sticks
I live in a yurt now
I’m done with bricks

I finally got the Lotus
But then I got stuck
All this yoga’s so much work
When all I need’s a ****

I meditated the shit out of you
But i guess the message didnt get through
All my chakras are turning blue
I don’t know what that means
But I’m eating more tofu
I hope I impress you!

(half lyrics, half poem, half serious)

en francais

desolee mais je ne peut tenir pas ma promesse

je dois faire mon vie et c’est ne pas ici

avec tu

je passe le soleil a mon amie

c’est ne pas une problème

mais je ne jamais l’aime

ici

avec tu

tu ne voir moi

tu voir un dessin que ta esprit as rêvé

gardes mes lèvres

un rêve est mal si elle ne vit pas

et je ne vivre pas

avec tu

personne ne sait

qu’il comme la mort

tous lest jours ici

avec tu

il est mon cauchemar

a mourir dans vos bras

ici

je me réduire

et je deperir

et je me suis perdu

desolee mais je ne peut tenir pas ma promesse

je dois mon vie et c’est ne pas ici

avec tu

(This is about being chronically sick for 10 years and counting, and disliking the people I am forced to live life with. It’s probably a terrible thing to feel, so I wrote it in French.)

Dawn

Let me step into my Dawn
I want to see the sun
I want to feel the air on my face
And life spread on open plains with
hearts beating
Like stampedes

Let me step into my Dawn
Let me sing freedom

Let me step into my Dawn
Take my hand and send me,
Surefooted and gasping,
With love
On my way
into Life

And with joy in my heart
I will wait for you there

A Shitty Superhero

i can write about
useless boys and
heartbreak
and tears and loneliness and the dark
those are fun
and stupid
and beautiful
in comparison

but knowing
for a heartbeat
what it’s like
to want to leave the party

to sweet talk at
eyes that will never see

and start nobly
again,
once more
from hard beginnings

it took me ten years to get this low
‘i couldn’t do what you do’
but still, here i am

doing it

Un-Poetic

You were a sad
Lacking
drag-a-long sack
You didn’t want to give anything back

Or put action to words
Live, or understand
Just sit on your arse
With your dick in your hand.

You thought about flowers
and sunsets and me
but that was like getting up to switch off the tv…

Wish this was less empty
More love and less cruel
But I work with the facts
there’s not a lot I can do

It’s funny how different two people can be
And still think they’re the same…
You’re a joke!
But the punchline is me

We’re Not Cool

I am far too kind
And you are far too cruel
But my saying so won’t help so
Whatever, we’re cool

I think you’re sad and base and crap
And a waste of fucking space and that
But my telling you won’t help so
Whatever, we’re cool

I think you are infinitely pathetic and sad
It’s your fucking fault we had what we never had
But my telling you won’t help so
Whatever, we’re cool

Id love to know what’s in your head
Why I never made it past your bed
But my knowing won’t help so
Whatever, we’re cool

I want the truth and what you feel
About me and if it was lies or real
But it won’t help so
Whatever, we’re cool

And if i shout and give you hell
You’d deserve it, but I’d hurt as well
It won’t help so
Whatever, it’s cool

I refuse to launch a full attack
It won’t give you a conscience or get you back
It won’t help so
Whatever, it’s cool

That’s that
That’s me
And that’s you