Friday, 27 June 2014

Mr Fox (Poem - 2013) AKA 'WE Buy the Papers'

Mr Fox is on the prowl again
He’s been rooting through the neighbour’s bins
To find himself a tasty treat,
A juicy morsel he can eat,
Tomorrow morning to her rage,
It’s regurgitated over the page.

Mr Fox I see his eyes are bright,
He wonders what he’ll find tonight,
In daylight he will hide his mirth,
‘Til he finds out what a picture’s worth.

But the stars you know, they question why
Mr Fox and Co will cheat and lie,
For years it seems their phones were hacked,
They were angry when the fox attacked.

For fame and wealth anonymity was traded,
Now they’re shocked to find their lives invaded,
Mr Fox you see he’ll always win,
While the public feed on celebrities’sin


Wednesday, 25 June 2014

Only then... (A Mini Blog)

Usually, I wouldn't wish disability, illness, pain, or struggle, on ANYONE. 
However, this government are an entirely different story! 

I want them to have their lives ripped to shreds, and then to feel so much pain, that they can barely move...!

After that, I want nearly every media outlet or publication in the country to ram down their throats, what worthless, useless, 'scroungers' they are,ahem....saying nothing!

I want them to be viewed with doubt and suspicion, for even daring to try and try to live the best life that they can. Maybe at that point, they will begin to doubt themselves like we have been made to.

I want them to be called 'scrounging scum' in the street, and then they should gradually lose every bit of dignity, self respect and independence, they have ever fought for - all because some heartless, evil policy says they should!

Only then, would those people ever have the slightest idea what they have put the disabled, ill, and vulnerable people of this country through!


Sunday, 22 June 2014

Finding Inspiration (2012)

I'm not having much luck today 
Finding inspiration. 
I look, 
Maybe as many others do, 
At the stars before dawn, 
And hope, 
That they will shine light, 
Into my darkness. 

I'm not having much luck today 
Finding inspiration. 
My first taste of tea, 
That would bring me warmth 
And comfort, 
Instantly clearing 
My clouded mind, 
Stands untouched, 
And cold. 

I'm not having much luck today, 
Finding inspiration. 
The sun, 
That dances across my table top, 
Making me smile, 
Has disappeared, 
Seemingly forever, 
Behind it's cloud. 

I'm not having much luck today, 
Finding inspiration. 
The music, 
That plays in my mind 
And on the stereo, 
Is empty, 
The notes feel silent, 
And words mean nothing. 

I haven't had much luck today 
Finding inspiration. 
The breeze of life, 
That picks me up 
And helps me to fly, 
Has gone, 
And not taken me with it. 
My world is still. 


Thursday, 19 June 2014

Simplicity (Poem - 2011)

I don't need jewellery or a flashy car 
I need things that are more befitting of me. 
I need endless paper and pens, 
With cups of steaming tea. 

 My wedding ring is a plain silver band, 
No diamonds or flashy brightness, 
For as long as I can hold your hand, 
I will bask in its rightness. 

I don't want lots of money or the latest thing, 
I just want time to read my books, 
And a space 
Where I can sing. 

I don't need craziness and chaos 
Or a life of screaming kids, 
I am happy when the sun goes down, 
And we are all there is. 

Our house isn't massive, 
It doesn't have to be pristine, 
It's cosy and loved and you are there, 
So I am living my dream. 


Monday, 16 June 2014

Her Teddy Bear- (Poem - 2006)

I'm the teddy bear,
She has had since she was born,
I'm showing signs of aging now,
My fur matted and worn.

I'm her teddy bear,
She used to hold me at night,
I'm the one who knew instantly
When something wasn't right.

I'm her teddy bear,
I have watched her through the years,
I'm the one who's been there
To absorb her tears.

I'm her teddy bear,
You know I've seen her cry,
And it's me who listened
When she asked me why.

I'm her teddy bear,
I've seen her slam the doors,
There are days when she has come in cross,
And thrown me on the floor.

I'm her teddy bear,
She used to rub my ears,
I've been there when she's cried in pain
And is consumed by fear.

I'm her teddy bear,
You know, I witnessed their first kiss,
I'm so happy and proud of her,
She deserves moments like this.

I'll always be her teddy bear,
I still see her every day,
She's more smiles than tears now
And he makes her that way.

I'll always be her teddy bear,
Although it's him she holds at night,
Sometimes I do feel jealous
But I know it's only right.

I'll always be her teddy bear,
And now she is his wife,
I'm so glad she has brought me along,
To watch over her new life…


- Written in my old room at home, the night before my wedding
April, 2006

Friday, 13 June 2014

Life Is What You Make It - Campaign Edit

From the start, things were stacked against me. I was a premature baby, born at seven months. That alone meant my chances weren’t good. I was tiny, weighing less than a bag of sugar. I fit easily in my parents’ hands, but, thanks to a series of ‘unfortunate events’, it would be a long time before either would hold their baby daughter.
Soon after my somewhat eager entrance to the world, I was taken, as ‘prem’ babies are, to the Intensive Care Unit, and placed in an incubator. I will tell you, to the best of my knowledge (through what Mum has told me) and ability, about the events that happened next, and how they would change my life…forever.
My first few days were anxious. My tiny body struggled to hold onto life and my parents could do nothing but watch.
I was looked after by a wonderful team of doctors and nurses who did everything they could for me. Somehow, I caught an infection. All I know is that this infection developed into septicemia and I now needed a blood transfusion.
My parents waited.
I came through it.
Over the next few days, I was returned to my incubator wrapped in bubble wrap, (very fetching!) and attached to a heart monitor. Mum was relieved. “She’s come through this; surely, nothing else can go wrong, can it?”
In the early hours of the following morning, Mum awoke with a jolt. Something wasn’t right. She instinctively checked me and called for the doctor. The heart monitor I had been linked to showed no problems, it was beeping reassuringly, as always, but … I wasn’t breathing!
The doctors battled to save me, “Come on, baby” one was heard to say. “Come on!”
I must have heard them, because I began to breathe again. My mum cried. I was alive!
But I had already paid the price, and my life had been changed forever.
In those minutes when I was ‘dead’, no oxygen was reaching to my brain, and the parts that control my mobility were damaged. I was nine days old.
Cerebral Palsy affects its sufferers in different ways. Some can’t talk or walk, some have learning difficulties. I know I got off lightly. But it’s been a long, hard road, getting to where I am now.
Until I was eight, I attended a ‘special school’, attached to the hospital where I was born. It was a cozy, happy, safe place. I had a lot of my friends and many of the teachers there called me “Miss Sunshine”.
It became obvious to my parents that I needed more. I could do more.
All I knew was that there were days when I would finish the work early, and I was able to sit at my desk and write stories. I loved that, but what I loved more was helping the other children. They were my friends and there we were all in the same boat. I was not different.
I had many friends that were much worse off than I was. My best friend, Eleanor, was a lovely little blonde girl, with the most beautiful blue eyes I have ever seen in my life. ‘Ellie’ couldn’t walk or talk. She talked to me though. We developed a code. She used her hands, eyes, and facial movements to tell me things. I’d ask her a question and she would indicate yes or no with her left and right hands. Most importantly to me though, she was Ellie. She would laugh with me … although sometimes, I knew she laughed at me! I would spend playtimes, despite my difficulties walking, pushing her around in her chair. I was nothing special, I just loved being with my friends.
The day I left to go to my local ‘mainstream’ primary school broke my heart. Saying “goodbye” to Ellie was hard, because she couldn’t tell me she understood, although her eyes said she did. I never saw Ellie again.
I started my new school a week or so before my parents’ separation.
I was the only person there with a disability, and for a long time children stared at me. I was different. One of the things I hated most was assembly. While the other children sat cross legged on the floor, I had to sit, to the side, on a chair. Crossing my legs caused me pain. It still does.
Eventually though, things settled down a bit and I found my niche. I was ‘skipping rope holder’ at play time. Part of me felt wonderful, so pleased and relieved that they wanted me to play with them, but it hurt too. I wanted to be the one skipping or playing hopscotch, and I hated being left out of ‘kiss chase’ but I understood that it was just the way things had to be. There was, there is, no choice.
At age eleven I moved over the road to the local secondary school. Again, I was the only one with a disability. I was a different ‘fish,’ and this time, in an even larger pond. This time though, I didn’t feel so alone, because a lot of my friends came with me.
P.E. lessons were always the worst. I was time keeper, or whistle blower.”Count the cricket bats as you hand them out, Helen.” It was all the teachers could do. It wasn’t their fault. I had to be included.
It wasn’t their fault either that I would frequently go to the ‘girls toilets,’ lock the door, and sob my heart out.
In time I discovered that there were things I was good at, things I could really do.
You know I had always loved writing stories, but it was around this time that Mrs Rogers, my wonderful English teacher, suggested I write a poem. I rolled my eyes, smiled, and said, “Yeah. It’ll never work!” She just smiled back at me, “We’ll see…” she replied.
Apart from writing, my participation in P.E lessons had taken a new, more exciting twist, (no, it wasn’t a tall, dark and handsome teacher in shorts), but dance lessons!
I hear you say, “Well,that should be her idea of hell, shouldn’t it?” But, it wasn’t! I became a choreographer. I would devise the dance moves and routines for my group. “Can you just move your leg up a little higher? Hold tighter! “Ok, start again!” I loved it! Teachers would come and watch and people actually wanted ME to become part of their group!
Just when things were starting to get better, my condition, as the doctors had said it would, began to get worse. I had been in a wheelchair for some of the time, for many years, but now it became a virtually permanent thing. I knew it would happen. Puberty had made my body heavier and so the strain on my already painful hips and knees became worse, and the increased pain, unbearable.
It was time for ‘The Surgery’.
I can’t even begin to tell you how terrified I was. The hospital was 150 miles away from my home in Somerset. It was ‘the best’ place for me to be. I knew it would involve at least three operations and I knew I would be away for at least three months.
My first of this set of operations took place on July 4th of 1996. A family friend called it ‘Helen’s Independence Day.’ I wanted to crawl under a stone, and die. “Just think of how wonderful it will be when it’s all over” Mum said. I smiled and said, “Oh, okay.”
During the first operation, the doctors had to break and reset my left hip so that it was in the ‘right’ position. They put a big plate in my hip to help the bones heal. The plate had to stay there. Also during that same operation, they put a screw in my left ankle, to help it take weight. The screw has to stay there too.
I don’t remember much about after the operation, just snippets, and pain.
But the pain and the events following the second operation, I will never forget.
It took place two weeks after the first, and it involved…cutting muscles.
The doctors had to cut the muscles on and behind my knees in both legs, and also cut the muscles just above my hips. Again, it was both legs.
I woke up after the operation, and immediately, to put it bluntly, wished that I’d died on the table. All I could see was a red haze, and the pain was…well, it wasn’t pain, it was agony. I can’t describe it to you so I hope you don’t mind if I don’t even try! I just know that I’ll never forget it.
Mum says I opened my eyes, looked at her, squeezed her hand and passed out again. The next few weeks are what I call my ‘lost period.’
I was attached to a morphine drip, still in pain and in and out of consciousness.
One day though, I had the strangest experience. I woke up, and I was above my body, staring down at myself. I could see my parents on either side of my bed and me, lying there, pale.
I remember clearly being able to see Alfie, a boy in the next bay that I had made friends with. He was talking to the nurses. The next thing I knew I was back inside my body, and holding my step dad’s hand.
Soon, my rehabilitation began. I had to learn to walk from scratch, the ‘right’ way.
It was hard, so hard. There was day after day of physiotherapy, exercise classes, hydrotherapy, pain, and more pain. I didn’t even get a break when I was asleep. I had to wear these long blue splints that went from top of my hips, right down to my ankles, and I had to sleep on my tummy. If I tried to change position, a nurse would come and flip me back again. They really must have had eyes in the back of their heads!
Eventually, it was time for the dreaded ‘bars’. They ran parallel to each other, and I had to walk down the middle and get to the chair at the other end. Every step was long, slow, painful, and so very frustrating. “Come on Helen, you can do it! Just one more!” I wanted to break down and cry. Frequently, I did.
It was around this time that I started to lose pieces of myself. My hair had gone grey and I had already lost weight, but then things got very bad.
I was only seeing my family at weekends. Life had to go on for them and they had jobs to do, so they had to go home during the week. When they arrived on Saturday mornings, I was awful to them. I resented them for leaving me and going back to normal. After all, I couldn’t. I was stuck. I resented them when they came, but I resented them more when they would kiss me goodbye and leave on a Sunday night.
I was a shell of the person I used to be. I hated myself. I hated the situation. I felt hopeless and pathetic. I didn’t eat very much, and when I did, there were times when I would make myself sick. I can’t explain it, but it went on for a while.
One day, Sister Judith took me into her office. “Helen, you can’t keep doing this. If you do…you’ll die. I know this is hard, but you need your strength. I don’t want to have to put you on a drip, love.”
I was still reeling. I didn’t want to die. No, I didn’t want to die, there.
Somehow, I managed to get it together, for the last ‘push’ as Judith called it. I just wanted to go home. I wanted to see my friends, my dad, my cat and, scarily, I wanted to get back to school.
It was hard but when I left hospital a month later I was walking with a frame. The operations didn’t turn out to be the ‘miracle cure’ my head and heart had hoped for but, I’m not in a wheelchair anymore! A few months later, after a lot more physiotherapy, I was able to ditch my frame with its go faster stripes, for crutches.
Life is tough, and I get frustrated. I get sad that I don’t get a rest from it, and I’ve been stuck with it, through no fault of my own, and yeah I get angry. There are days when I just crumple in my husband’s arms and cry like a baby.
People often ask me, ‘If you could wave a magic wand, would you change it?’ On days when I’m depressed, or in pain, yes of course I would! I would give anything to be able to carry my dinner across the room, go for a long walk with my husband, or run up a flight of stairs, but more often than not, I know it helps to make me who I am.
What I’ve been through (I hope), makes me a better campaigner. I see people as people rather than their illness, or a number on a page. Each person has a story, and life experience, and it’s all worth listening to .
That is where this government is going wrong. They don't see us as individuals. To them we are a seemingly worthless ‘problem’ group of people who don’t fit where society (and the government want us to). That is not our fault! I certainly wouldn’t choose to be in this situation. I don’t think anybody would.
Since I am though, I am determined to try and do something good with it. I want to turn all the bad things into something positive. I want to help increase understanding of the difficulties that disabled and ill people face on a daily basis.
Disabled and ill people aren’t ‘scroungers’ or a ‘drain on society’. We have been through more, and continue to go through more than most people can imagine. We are all a part of society, and deserved to be treated with respect and dignity, just as everyone else is.
My life is worth something, despite what this government would have me (and the rest of society) believe.

I have been a disability rights campaigner, (at different levels, when able, of course), since I was eight years old, (almost twenty six years), and I will go on fighting for as long as I have to.

After all, life really is what you make it!

                                          Baby Me!


Sunday, 8 June 2014

Twenty Five Years, and Counting - Part Two

 At the moment, I don’t really need to write new stuff. The old pieces are doing more (when I share them), than I EVER thought possible. I think that’s what I’m going to keep doing for a while.
I didn’t realise that the poems, and other pieces would have the impact that they seem to be having. I can’t really believe it!
Thank you so much to everyone who shared and tweeted 'Part One' of this article.  You gave a very tired person hope that people were listening. It meant so much.
People have been messaging to say, ‘I understand better now’, or ‘I didn’t realise, now I do’.
I got a bit teary! Every time something gets shared or re-tweeted, I just have to be confident. Confident that it’s getting our message, a little further each time.
Even though the poems might not all be about the government’s antics, they seem to be opening people’s eyes to what it is like to live with a disability or illness.
If we can make people understand the reality of that better, and make people remember that we are human beings, with feelings, and not just a number on a page, or a nameless ‘scrounger’, then maybe that will help.
That’s what I’m trying to do by sharing the poems, and pieces. If I change one person’s mind, or make one person think, (before they judge us, in the way that the government WANT them to), then I have done what I set out to do twenty-five years ago.
I don’t want people to think I am ‘in this for my ego’. If you could ask the tiny eight year old girl I was when I started this, if she was ‘in it for her ego,’ she wouldn’t have had a clue what you were talking about, and twenty-five years later, I wish I still didn’t!
Unfortunately, there are people doing this that (might) have other motives, and there are people out there, who might lead the cause in (what many consider to be), the wrong direction. It’s not up to me to say, one way or other.
Everyone goes about things the best way they know how, and we have a fight on our hands, more now, than ever before.
There IS an attempt to vilify and de-humanise disabled, and ill people. There IS an attempt to make us seem like ‘scroungers’ and leeches, bleeding a struggling country dry!
There is doctoring of figures, and blatant lies being spread, but the fact is, the most vulnerable people in society, are not the ones at fault. We didn’t choose to be ill, disabled, unemployed.
Nobody would choose to live with such heartbreaking limitations placed on our lives, and we didn’t choose to vilified, victimised, and made scapegoats!
The economic crisis is the fault of bankers, corporate tax avoiders, and people who decide to hide their wealth, rather than pay what is fair. It is not the fault of those who can least afford to live, and who struggle (already), through everyday life!
It’s hard, and it’s heartbreaking enough to be in our situations. Now we are told (on a daily basis) that we are worthless ‘scroungers’, and we cost too much to keep. How is that supposed to make us feel?!
Twenty five years ago, I would have never have thought that in the future, I would be opening newspapers, and reading headlines, that made me hate myself – just for being disabled!
I would give anything to go back to focussing all my energies on fighting access issues, level pavements, accessible buses, and all those things.
I want to go back, and focus on the ‘little decision’ I made as an eight year old, to try to change the way disabled people were perceived.
All I wanted was to help people understand what it’s like to be us, and to make people aware that we can do good things. Now, I’m part of the fight to help us SURVIVE!
I can’t believe how things have changed. I don’t want to believe it. Everything I did before, for all those years, seems so easy compared to now, and I want those days back!
I thought it was a fight, then. Ha! I didn’t know when I was well off!
Then, it was a fight for equality, and access. Now it’s a fight for compassion and understanding. It’s a fight, for basics, and rights, but more than that. it’s a fight to LIVE!
As I said before, I dread to think where the ’cause’ will be in twenty-five years time! Sometimes I see things, read things, and feel things that make me dread the next twenty-five minutes, as a disabled person!
They’re taking vital benefits, cutting much-needed services, closing the Independent Living Fund! All these things aren’t luxuries, they are necessities!
If I have to fight and this level, after the 2015 General Election, I don’t think I can do it. I don’t think I have the strength! It feels like they want us, to give up, turn our faces to the wall, and die.
That’s what’s happened in so many cases, already. People being found fit for work when they aren’t, people committing suicide after the loss of benefits. People feeling so desperate, and isolated, and unwanted, that they see no option, but to end their own lives!
What sort of country is this, where that is even considered OK? It should be all over the media. Maybe (if it was happening in another country), it would be. To me, it seems like WE have been forgotten, and already pushed to one side.
This should not be happening, and the damage will take years to repair – if we ever can! I dread it, I fear it!
If the little eight year old girl who was me when I started had known what would happen she would’ve been terrified.
Anyone can become disabled at anytime through accident or illness, or have a disabled child, joining the many thousands of people who are already terrified of what their future may hold.


Thursday, 5 June 2014

Slipped (Poem)

I've slipped
I am shipped,
To the middle
Of a distant sea.

I've fallen,
And I'm all in
Drowned in things,
That can never be.

I am frail
And I fail,
Pain cuts through me
Like a knife.

I am crying
Just left lying,
No hope
Of a better life.

I had slipped
Wings were clipped,
I wanted
To get away.

I was lame
Then you came,
And you
Asked me to stay.

I was broken
Words unspoken,
You could never

I'm me
And now I see,
You offer
Me your hand…