Thursday, 10 October 2013

My Real Name is Susan (Poem 2013)

My real name is Susan
But the Police don’t know that,
For now, they know me as Jenny,
Who burgles, like a cat.

Online I am April
An expert in cyber crime,
Collecting personal details,
They won’t catch me, this time.

The bank thinks I’m Zoe,
A tall and leggy blonde,
I’ve emptied a neighbour’s cheque account,
When they notice, I’ll be gone.

On the plane, I will be Karen
Well dressed in business suit,
I’ll be smart, rich and charming,
And drink champagne by the flute!

On beaches I’ll be lying,
Still living for the con,
Behaving like I’m royalty,
And a beautiful sun kissed bronze.

They will catch me when I am old and grey,
When my life has hit the skids,
I’ll be widowed by a rich man,
And have a couple of kids.

I am a lonely alcoholic
In a small house by the sea,
My real name is Susan,
But I’ve never found me.


Wednesday, 9 October 2013

Voices Unheard...A Life Sentence.

These ear drops smell like flowers - nasty ones. The type that make up your Nan's perfume. Another infection. I seem to be getting a lot lately.

On top of that, I have to have lots to drink this morning, so I can wee in a pot! My kidneys are hurting now, on top of everything else.

The doctors know that they are small (as all my organs are) because I was a ‘prem’ baby.  They need testing to make sure they are functioning as they should be, so I have to wee in a pot.

Have you tried weeing in a pot that size?!

Not even a man with the very best aim, (which, granted, most of them don't have in a month of Sundays anyway), would be able to direct pee into a pot that size!

Please, it's ridiculous!

Yes, too much information, I know, but this is the reality of living with illness and disability and it’s a reality that too many people don't think about.

Luckily I don't have to do things like this as often lately, (although my kidneys have hurt on and off for a while now).

If I had to go into work afterwards, I dread to think what time I'd get there!

With the Endometriosis pain the way it is too, plus my hip cramping up, I don't really want to move very far today and I probably couldn’t, even if I wanted to.

It's all very well to say 'disabled and ill people can work', but what sort of employer is going to want ME?!
'I'm sorry, I can't come in today, I can't get out of bed,' 'I've been up all night with pain,' 'My anxiety stopped me sleeping' 'I've got my head over a bucket in case I throw up,' etcetera, etcetera!

Reality check! It's not as easy as the government and media make it seem...is it?! I hate them for it.
This is MY LIFE we are talking about! It is many people's lives!
Perhaps their short sighted, quick fix, unrealistic 'solution', isn't the answer! Perhaps compassion and understanding is!

We are all different. It is not a case of ‘one size fits all’ with illness and disability, even though the government (and the media) seem to think it is.
The fact is, no matter how much the government want us to work, (and no matter how much we want to), for a large amount of us (and for many varied reasons), it is simply not possible.

Two hours later...

Yay!  Victory (over the wee pot) is mine!
But, you know what, before I go back to bed, I just want to say one thing, and it’s important (to me at least), that I say it.

I'm not one to say that those people who have had disabilities or illnesses for life are worse off than those who 'gain' them, or vice versa, (I would never say that, because it’s not a situation anyone would choose, and it’s hard either way), but I will say this.

Just because I've had my Cerebral Palsy for life, it doesn't mean it is any easier for me. I've had a lifetime of having to think my way around problems, a whole lifetime of pain, stress, and more hospital appointments, fights for my rights, surgery, cancelled plans, limitations, and heartbreak than anyone can shake a stick at!
I know that I've got more of all of those things to come for the rest of my days. There is no break for me. There never has been.
I think sometimes, the 'newbies' (or whichever term you choose to use) might think we have it easier because we are 'used to it.'

Therefore, (it seems to me, anyway) we often feel ignored, and our opinions and experiences don't matter like theirs do.

You know what? We do matter, and we shouldn't be sidelined! Please Ask us TOO! Maybe we can learn from each other.

Just because us (what I like to call ‘lifers’ – again you can use many other terms) never had something, doesn't mean we want it, need it, grieve it any less!
The ‘newbies’ had a chance to live a healthy life, have kids, have jobs etcetera, - we have not.

They’ve had it ripped away from them, and that must be hell, but I've never jumped in the air, kicked up leaves, carried a cup of tea across a room, or held my child in my arms.
I've never had those chances, and I never will.

My point is, there seems to be an idea, (in some campaign circles at least) that us 'lifers' don't need support because we 'have it covered'. To me, it feels like our experiences aren't worth asking about, because we couldn't possibly understand what they have lost, but we do! 

As I said, we have lost it all too. Please listen to us, ask us what we want and need. 

Everyone has something to contribute, no matter which route we got here!
We can (and should be able) to help each other!

We can do this. I know we can, but we need to work together. No one should feel excluded or pushed aside. We all have a right to be heard.

Friday, 4 October 2013

There is Nothing 'Fair' About This Government's Treatment of Sick and Disabled People

‘It’s about being fair’, said a Tory on Channel 4 news tonight. What does this government know about being fair?!

Is it fair that sick and disabled people are losing their independence and forced into poverty, or even a premature death, after having their benefits removed?
I find it convenient that the Department for Work and Pensions will not reveal the latest death figures for those who have died after being found ‘fit for work’. They no longer keep count apparently. What does that tell you about their approach to transparency?
Is it fair that people, including the sick, disabled and elderly, are being turfed out of their homes due to ‘Bedroom Tax’?! They promise exemptions, but very few have been put in place.
Is it fair to exploit unemployed people by forcing them to work for free on ‘workfare’ with the threat of having the only means to support themselves (their benefits) being taken away from them?!
It’s slave labour if you ask me! Get a person to work for less money than you would pay in wages. And how is that supposed to help the economy? It doesn’t! The only people it helps are employers and big business to get free labour and cut their wage bills, and it takes paid jobs away from those looking for work.
How is taking housing benefit away for people under twenty-five fair?! It will only lead to more homelessness and hardship. A situation which has are already seeing in towns and cities across the country.
Subjecting ill, disabled, and vulnerable people to a Work Compatibility Assessment which has been set up to make us fail, (including those with degenerative conditions and those that won’t improve) – how is that fair!?
Victimising the poorest and most vulnerable people in society by calling them ‘scroungers’, ‘fakers’ and ‘fraudsters’ based on highly questionable figures – is that fair!?
Telling the public that benefit claimant’s get ‘something for nothing’, when in reality every single one of us pays to live in this society through taxes on things we have to buy – is that fair!?
We struggle to live every single day of our lives against pain, exhaustion and illness. None of which I would wish on my worst enemy! We are ‘strivers’ – despite what this government would have the public believe! We have to ‘strive’ for every…little…thing!
Ignoring the truth that the majority of benefit claimants have worked at some point in our lives and contributed to society – is that fair!?
No,.. it isn’t fair! None of it is fair, and it needs to stop, now!
Nobody chooses to have a disability or to be ill, and nobody deserves to be treated like this government are treating us!
We are not second class citizens! We are not scum! We are people! We deserve the same respect, compassion and consideration as anybody else! I for one am sick of being a scapegoat for the mistakes of this government, big business and bankers. Tax them, not those that can least afford it!
It’s about being fair is it?! If this is fair, I would hate to think what unfair is!
We are paying with our lives! I am sick of being judged and being made to feel like I am worthless, just because I have a disability, and on top of that, illnesses which add to what I already go through.
I want this government to show me some respect!. I want to feel like I am valued in society!
One thing is easily forgotten: Illness and disability can happen to anyone,.. at any time. This government would do well to remember that!

A Letter to My Grandmother (written 2010)

Dear Gran, 

I wish more than anything that you could read this letter. 

You seem so far away, well, I guess you are. 

The Alzheimer's Disease has taken you from us, and you no longer recognize the grandchildren you loved so much. We miss you. 

I miss singing ABBA songs in your sunny living room, and dancing with you as much as the Cerebral Palsy would let me, and then the two of us finally falling contentedly on to your brown tassled sofa. I was happy then. 

I loved listening to you sing, early on Sunday mornings, when you thought no one else was awake. I never did tell you how much I enjoyed getting out of bed then, and creeping downstairs, just so I could spend time alone with you. 

We would sip steaming mugs of tea, and put the world to rights over the kitchen table. Mum says my tea 'addiction' is your fault! 

If you could see me now, you would tell me to wipe my tears, and be brave. I know you would, so I'll try not to cry anymore. 

We had many arguments - I won't pretend we didn't. 
There were times when we would shout at each other, both of us wanting the last word. That's the problem when you are cut from the same cloth I suppose. 

It would always end in an apology, granted, usually mine! Then we'd have a cuddle and yet more tea. 
All those arguments seem such a sad waste of time now. Time that you could've spent telling me more stories. You probably wouldn't believe me, but I really did enjoy hearing them. 

Tales of your evacuation during the war, when you were able to run and be part of the countryside. Your face would light up when you talked about that, and the wonderful times you had with the other girls in the children's home. 

I hope that is where you are now, as you sit in the chair by your hospital bed. I hope you are running through those fields, or spending time on the roller skating rink, where you met Grandad. 

I wish you could see the person I've become. I know you would be proud of me. You were right about so many things. I did find someone to love me for who I am, and I know you would think the world of him, too. 

More than anything though, I wish I could make you well again, and bring you back to us. 
Wherever you are today, I hope you know how much I love you. 

All my love, always. 

Helen xx 

                                                            In Memory of Gran

Wednesday, 2 October 2013

Things My Gran Taught Me

My Grandmother died in December of 2012. I choose to remember, not the frail, elderly, lost woman she became as the Alzheimer's disease took her from us, but the funny, witty, bright and somewhat mischievous woman she really was.

This is the first of two pieces I'll blog in the coming days. The second being a letter I wrote to her when she was ill in hospital. She never read either of these pieces, and the latter was adapted and read at her funeral, which took place on the 8th January, 2013.

My Gran always had a twinkle in her eye, which she never lost, even at the very end. I think sometimes, when people we love become ill, and we watch them suffer, it can be very easy for our last memories of them to be exactly that. Memories of suffering and pain.

I don't want that for her. She was (and still is) so much more than the disease made her.

I was lucky enough to spend many hours with her. Time when it was just us, sitting at the kitchen table drinking tea, and putting the world to rights, before anyone else got out of bed.When I got older, we'd sit in the living room drinking vodka, late at night.

I loved going to stay with her, and I loved our chats. I won't pretend we always got on. There was the odd spat, but cups of tea usually solved all that.   

She gave me lots of little snippets of advice, weaved in and out of the stories she told me. Stories of her life, and stories about my Mum, Uncles' and Aunt as children. 

She probably thought I would forget all the advice and little things she told me, but I never have, and I hope I never will.

That's why I wanted to share some of that advice, here and now. She was wise, funny, mischievous, and very clever. Some of that advice has got me out of many potential 'situations'. Especially, the one about the knickers! I hope enjoy them as much as I have.

'Always brush your hair and wear clean underwear. You never know when you might get hit by a bus!'

'Never marry a politician. If they can lie to other people, they can lie to you'.

'Before you go to the loo, always make sure the lid is up!'

'Helen, you haven't had too much to drink until you can see four of your crutches!'

'Don't eat too much cheese, it gives you arthritis you know...'

'Never marry a man you can't be friends with.'

'You shouldn't drink vodka straight, it rots your insides!'

'You can never have too much tea!'

'Don't marry anybody who doesn't like animals'.

'If you've been to the loo, and you're wearing a skirt, always make sure it's untucked from your knickers!'

'Always be yourself, Helen. If someone doesn't like you, it's their problem - not yours!'

'I think things always turn out for the best in the end'.

Gran, with Hugo the puppy, my sister Ali, and I.

Gran, Ali, and I

Gran and baby me.

I love you Gran, and miss you every day xx