Encephalitis Society

Resources – Your poems

Encephalitis
by Susan Hill


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stories & poems

Two to One

“Will she live?” I asked.
“50:50” they replied.
My heart got out its purse and placed a bet at
2 to 1. I would take those odds.
I was just glad she was racing

With God as the ultimate bookmaker
I asked him for some help
I paced up and down
making sure not to step on the cracks in the tiles.

When I heard she had won, I smiled. I didn’t cry.
I collected my winnings.

“What will she be like now?” I asked
“50:50”, they said.
I was so pleased that she’d won, I took those odds as well.
I didn’t mind if she wouldn’t race again.

I took my filly home
She didn’t remember her stable, she didn’t remember her foals
She didn’t remember me, her fine stallion.
I didn’t mind. We would start again.

“Will she get better?” I asked
“50:50”, they said.
She did get better. Much, much better.
But she didn’t race again

We spent many hours in our stable.
Our foals grew up into beautiful fillies
Our lives intertwined again.
We didn’t bet any more but gambolled in our field

Love Graham


Thank you, Paul Wicks for this poem and Ian Shaw for the illustrations

I sat in the dark, head all fuzzy….
I’m feeling rather rough, that aint like me.

My heads gonna blow, can’t stand the pain,
Oh bloody hell, here it comes again…

I wake up weird I can’t see too well,
Am I in hospital, I think, but I can’t really tell…

Yeah there’s the wife, mum and dad,
What’s up with them they all look sad?

I got a mask on oxygen thingy,
Ewww it stinks like a sunken dinghy!

Bloody hell I'm sitting here nude!
Stretch marks, arse on show, sorry to be so crude…

Could you cover me up, I’m getting cold,
Oi listen to me, what’s that their being told?

The doc shakes his head, he’s looking glum…
But I don’t really care, just cover me bum!

Has he had any drugs? Or alcohol too?
He’s in a kind a coma, could be a week or two…

Before he’s awake, if we are lucky,
NURSE! Get a pad, he’s done a mucky!

Bloody hell, why won’t they hear me?
I’m trying to shout, there so near me…

What’s that I realise, my mouth won’t move?
OI! What that nurse planning to do with that tube?

All my gawd, it’s going dark again,
I’ve been out cold, I don’t know since when.

I’m feeling great, jeez my gut rumbles,
What happened doc, did I take a tumble?

We don’t quite know, we are baffled the doc said,
But we think there sumin funny going on in your Ed!

That night I went to sleep, tossed and turned,
The pain in my head oh my how it burned…

Visions I had all creepy and scary,
Great big spiders all big n hairy…

Feeling rough my head is spinning…
All I hear is the snores of other patients and the drip; drip dripping

A week passes I've had all sorts of tests,
A doctor comes down from London to visit me in bed.

He said; a brain tumour is what I think,
That’s why you’re having seizures, and hit your head on the sink…

Oh blimey I thought, this is it…
I’m a good guy, it wasn’t meant to turn to shit…

Down in an ambulance to a specialist unit,
We can chop of your head, and see what’s in it!

Loads more tests, needles and scans…
I had so many X rays I should have had a tan!

Then sumin dawned on me, I’m stuck in my head,
No way of getting out of this bloody bed…

So I imagined a world where I was better,
No more sleeping in pooh, or being a bed wetter…

Where I could move my legs, and see my wife,
A world where I lived a normal life…

Diagnosis came, no tumour but meningitis, encephalitis and a stroke,
Brain overload, it had enough, it had broke…

I stayed in this little of world of mine,
So healthy, loved and imbued with time…

Within a week, I was allowed to sit on the pan,
Was a great feeling I was the man!

The docs did well, reduced the brain swelling,
If they hadn’t had succeeded, there would have been no telling…

Of how long I would have gone on for, or survived….
But I should have felt happy that I was alive…

Determined and willed, I walked on a Zimmer,
I gotta get outta here, I hate hospital dinner….

In weeks I learnt to walk with a stick,
If I needed a pee, I even went quite quick…

I still kept that little world in my mind,
I really didn’t want to stay that blind…

Will in my head, fire in my belly,
I was determined to once again watch the telly!

Soon it came that I could see,
My ugly face in the mirror staring back at me…

I lost the stick, and hugged my wife,
Still in my head that neat lil life…

So nearly a year has passed since that day,
That someone took my life away…

Left me with no memory, no job, no life,
And filled my days with fighting and strife…

I still have trouble with moving and thinking,
Ended up with brain damage, as my brain was shrinking!

Some IQ tests I reached 132!
But some days I can’t even tie my shoe...

It doesn’t make sense, there’s no rhyme or reason,
Why did it happen, especially over the festive season…?

So Christmas approaches again, once more,
And I am determined to give god what for…

I was a good guy? I weren’t meant to be struck down!
I can imagine him looking back, all beardy with a frown…

“I told you 100 times relax, slow down,
You didn’t listen, you ignored me, you bloody clown…”

But I’ve got no strength, no peace of mind!
“Give it time, again you will find…”

But I can wake up and forget my name!
And I daren’t call the wife the wrong name again!

She’s done so much, caring for me and baby,
Then show her your gratitude god said, “don’t be lazy….”

“That lil world inside your head,
That’s the reason you’re not dead!”

“You wish you were dead, cos ya can’t recall,
Or your legs don’t work right, and that you had a fall”

“Look at it this way; you’ve got a new chance to get it right,
You lost the good, but also the bad that kept you awake at night…”

“So keep on plodding and make it real,
You’ve done ok, so let’s make a deal…”

So god offered to give me the power,
To improve myself, minute by minute, hour by hour…

If I did wrong, I would hear his voice,
But ultimately, in the end, it was my choice…

“Sit and stew, feel like hell
Or stand up and be counted and ring that bell…”

“Tell em that you’re doing the best you can,
And through all the pain you’re still the man…”

“And if you do wrong, fall or feel a fool,
Deep inside you, you’ve got the tool…”

“To continue your journey, in yourself believe,
Of these bonds you can be free…”

“Soon you will be ready to face the action,
Excuse me now, I gotta go sort out Michael Jackson…”

So off god went, I sat there bemused,
Didn’t expect it to happen that way, I’m a little confused…

But for now, I fight, I continue my path,
Happy I don’t need supervision when I’m taking a bath

There’s so much I lost, but then so much I gained,
Sometimes life is hard and sometimes it’s pained…

But I keep on plodding at my own speed,
Realising that I have lost all the need…

For money, for possessions, material things
And all of the trouble that theses things bring…

I received a gift, from those above,
I received a good en, I received love,

Maybe not from the gods, the universe or even you,
What I got from my family & friends was too good to be true…

But I’m reminded of my own little world, those dreams,
The visions I created to repair my brains seams…

To do that, I must have like myself quite a lot,
I must’ve loved myself, or I would have left me to rot…

So bear in mind when your body says ow!
If it heals, its proof in the here and the now,

That you love yourself more than you ever did know,
And that your seeds, with care will eventually grow…

I don’t intend to return to where I was,
To me I was in the wrong place, cos;

If I were meant to be there I still would be,
But I never listened to the signs, I ignored me…

So from now on, I listen to my over worked brain,
When it says slow down, you won’t get away with it again…

Please take my advice and you’ll be just fine,
When your head speaks, don’t ignore the warning signs….

2003-12-04


Encephalitis by Sarah Hill

It locks you away
inside your mind
inside your head
it keeps you alone
and different.

Deep down you know
what the difference is
who you used to be
the person you once were
But who are you now?

Try and explain it to others
can they really understand
Try saying “I feel different”
Folks politely ask me why?

Its simple,
my mind is like treacle
(the extra sticky kind)
that pulls out all your fillings
and causes your teeth to grind.

My head is like a vacuum....
of the cleaning type
that sucks up bits and pieces
clears away in one full swipe.

My memory is shot to pieces
my arms and legs are weak
my balance is non existent
held up by two left feet.

There’s my vision too
my eyes – mere shadows
of their former selves
Two friends who find it hard to work
although they can with help.

Some mornings I find it hard to wake
My brain’s been left behind
It’s vanished, gone the night before
Looking for things I cannot find.

I feel like something’s got me
Something weird form outer space.
Am I a “Stepford wife”, a “zombie”?
Am I part of the Human Race?

It doesn’t feel like it.

Do they tell you about the head pain,
The pressure building up,
The depression and the mood swings,
Desperation fills my cup.

My tendency to drop things
through my fingers light and weak
How many pairs of trousers torn
from falling off my feet.

Its changed my personality
every ailment caused by you
And so the list continues
my life revolves around –

trying to get over this
dreadful illness.

Encephalitis,
it changes life,
it changes you.



 


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Last modified: 01 April 2008