Saturday, 26 September 2015

Don't Judge Me, I Didn't Choose to be Disabled

I am looking out of the dining room window. Autumn sunshine is bathing the back lawn, and reaching to touch everything it possibly can. It gently caresses the browning leaves on the trees, making them glint slightly. They move as if responding to a lover's touch, as the breeze passes through them.

Then before I know it, the sun disappears behind a cloud leaving everything dull and colourless. It seems like all life has been suddenly extinguished. I envy the sun. It must be nice to hide like that, letting the clouds shield and protect you, until you feel ready to shine again.

I wish I were the clouds themselves, constantly floating, always in motion, and able to escape from everything that could hold them there. I want to run away. It would be lovely to be free of my broken body, just for a moment, a single blissful moment, when I would shine.
The Cerebral Palsy would cease to be and the pain that goes with it would vanish, like a whisper does, into thin air.
I dream of a time when I am equal. It would be so amazing to be free of it. I want to be accepted, just as the changes in the seasons are.

Underneath this damaged shell, there is a human being just like you. Tears fall from my eyes when I cry and if you cut me, I will bleed. Last time I checked, my heart was still beating, although, I admit there are days when I wish it wasn't.

What I hate more than anything is that I am unable to work. You see, sometimes the exhaustion is just too much. My body will not do what I ask it to, and the pain can be excruciating.
It is a ripping, tearing, gnawing sensation. There are so many days when it is sharp and relentless. I want to scream out in shear frustration, because I didn't ask for this.

I wish I was strong enough to have a job, to meet people, and say "Good morning. What needs doing today?" I did for a year, but I was exhausted and in so much pain at the end of everyday. I was heartbroken, but relieved when my contract wasn’t renewed. 
I'd love a salary again and to be able to feel like I have accomplished something at the end of the day, but I know I’m not well enough.

I don't want to live on benefits, and I can't stand the look in some people's eyes when I tell them I don't work. It is a nasty mixture of pity, and evident disdain.

I want to scream that it's not my fault. I want to tell them that tomorrow I may be in so much pain and so tired that I will find it impossible to get out of bed. I would tell them that last night the pain from my various conditions was so bad that I had to throw up in a bucket, while my husband held my hair. Can they not tell from the bags around my eyes, that I rarely sleep more than three hours a night because my hips won't let me get comfortable.

Now, on top of everything else I deal with, I'm facing losing my Disability Living Allowance. The sun goes behind the cloud again, and my heart begins to beat faster. I can say goodbye to the precious little independence I have. I won't be able to afford taxis to visit friends anymore, or a mobile phone to keep me safe when I do manage to go out, and oh yes, I won't be able to keep my wheelchair in good condition either.

These things may seem like luxuries but they are not. They are essential. I am unable to manage buses alone, and my husband would have to come with me everywhere if taxis weren't an option. Bye, bye girl talk, bye, bye, independence and bye, bye any self esteem I have left.  

The pain kicks in again as I watch him make my lunch. Before I know it there are tears in my eyes. Why am I such a burden? That's how I feel...a burden. I wish more than anything I could help him more, but it's so difficult when you can't stand unaided, never mind walk.  

I'd love to be able to stand in the kitchen and cook a meal, or even make a cup of tea without pain. At the moment, at least I know I can contribute to the household bills. I smile at that. It makes me feel ‘real.  Most people hate getting bills! I've come to love it – the ones I can pay. They drop through the letter box addressed to ‘Mrs Helen Sims' – I am an adult, a wife...There is a deep pain in my heart when I think once again that my disability means I can never be a mother. He hands me a bill, understanding how important it is for me to open them. WE have a household to run...even if it's only a household of two.

Thank you for listening to me waffle! It means a lot to be heard.  I hope that one day society will change its values. They will see people, their struggles and their smiles rather than how much they earn and what car they drive.

It is soul destroying to be in a world where that counts for hardly anything at all. The truth is that I feel increasingly worthless, and I wish I could be burnt away, like clouds are on summer days.

I am not saying for one moment that I am suicidal. I am not. Compared with others, I am so lucky.

My husband and I love each other so much, and everyday he makes me feel like I am the most special person alive. He says it is a privilege to be able to hold me when I cry, and to listen to me when I am frustrated and angry with myself.
He sees the real me, a woman, and his best friend. In these uncertain times, I can only hope that people's worth will be measured in other, truer ways, and there will be more people like him. It would make our lives so much easier.

Image: Google

Friday, 25 September 2015

Trouble in Paradise. (Poem)

Trouble in paradise,
Slow falling rocks.

Rivers run dry,
No more feeling,
What's the point
In believing?

Trees stark naked,
Cold and exposed,
Like the emotions on our faces,
For the world to see.

Trouble in paradise,
Bereft of warmth and comfort,
No more colour or caring,
It leaves a barren land.

Image: Pinterest


Monday, 21 September 2015

Music of the Night... (Poem)

She stands
In fading light,
Waiting for the peace of darkness
To wrap her in his arms.

The stars twinkle
Like glitter,
Her tiny specks of hope
In a blackening sky.

The breeze is gentle,
As he strokes her face.
The only sound is leaves,

Darkness brings her safety,
Warmth of his cloak.
The breeze,
With its dying breath,
Softly invites her in.

All is suddenly still,
Too her pounding heart,
Brings her comfort,
And speaks of mystery.

She smiles
And wipes her tears,
The day,
A world away.


Wednesday, 16 September 2015

It Can Happen to Anyone!

People close to me will know that a friend had a stroke at the end of November.

Luckily it was quite mild, (she was treated quickly), but she's had to drop her full-time job to part-time hours because she's still recovering, and getting very tired.

When I saw her last night, she told me she feels her employers are working to have her 'medically retired', and that she is a 'problem' that they are trying to 'tidy away'.

She's worked for her employer for many years. Naturally she doesn't want to lose her job, but it seems everyone she has been sent to, (in order to decide 'what happens next)',is somehow connected with said employer.

Last night, (while quietly talking to me), she was nearly in tears. She seemed pale, and more fragile than I have ever seen her.

She doesn't  yet know if the 'pay off' will be enough for her to manage on, and is feeling that she doesn't really matter anymore, anyway. 

Somehow a hug from me didn't seem like enough.

No one should be made to feel like she does, and she really doesn't need the worry of all this, on top of everything else she is going through.

The reason I'm writing this, is that she is proof that sickness and disability can happen to anyone at any time! It isn't a choice.

Please don't ever assume that it won't happen to you, or that you won't need help and support.
Her life changed forever, in a couple of minutes or less. So could yours!

Image: Google.


Tuesday, 15 September 2015

The Hut on the Moor...

It was so quiet
The old Sheppard’s hut on the moor,
Always in darkness
With dust on the floor.

A rusted kettle,
A blanketed bed,
Even in winter,
A home for Fred.

There was a small fire
On which he could bake,
But on stormy nights,
 The roof would shake!

He meant to fix holes
Through which came the rain,
But he couldn’t climb the ladder,
For too much pain.

Once he’d had a job
And he’d painted the walls,
Now they were rotting
And soon they would fall.

Don’t think Fred is lonely,
He has his sheep,
At nightfall their noises,
Will lull him to sleep.

In summer the sun shines
Through broken windows,
And where Fred will wander,
Nobody knows!

But he’ll always come back,
For it is nature he loves,
The changing of the seasons,
And the wide skies above.


Monday, 14 September 2015

No Change, No Future

Don't you feel angry 
At the state of the world? 
We should feel ashamed 
At the bloodshed. 

Is it fair 
That people starve, 
Waste away, 
Thin, neglected? 

Don't you feel fury 
At the mess in the world? 
A mess that we 

Is it right 
That our planet is dying, 
Choking, burning, frying? 

Don't you feel nervous 
At the time we are wasting, 
Stalling, standing, 

We should scream, 
Raise our voice, 
We do have a choice, 
Act now, 
Or destroy ourselves. 

Image: Google.

*This poem was written when I was about 14. I rediscovered it earlier today, and have left it as originally written.


Thursday, 3 September 2015

On My Sleeve...

Yesterday, an internet troll told me (amongst other things),that I wear my condition - (Cerebral Palsy), on my sleeve. No.It's called raising awareness!

The fact that I have been trolled at all says a lot about what disabled people are facing. It feels like compassion has all but disappeared, sometimes.

There is a lot more to me than disability, but this HAS to be done. I'm fighting back!

I'd much rather I didn't have to do this at all. I could spend my life just being Helen -trying my best, focusing on good things,-but this government mean that we have to fight harder than ever,to live our lives.

Disability rights campaigning isn't just about access issues, equality, the law, and getting people to view disability in a positive way,(as it was when I started). It's about saving lives now!

It's about counteracting damaging 'scrounger' rhetoric.It's about getting the truth out there, in the face of endless hurtful lies and prejudice!

I've been a campaigner,(when my health, energy and pain allows me to of course),for most of my life but I never thought we'd have to fight for basics, and justify our right to EXIST!

I didn't choose my disability, (the fact that I can't walk or stand unaided), my pain, or to be robbed of so many things others take for granted.

I didn't choose the fact that there are days when I can barely get out of bed, but I've always wanted to help others so I do what I can.

Those who know me see a person, but this government,media and a lot of people don't any more.

I thought I had come to terms (as much as I can)with my life, but now I feel I have to justify myself to others(and government),when I'd only just finished justifying me, to ME!

I've suffered from depression since I was fourteen years old - which has been added made worse by what this government are doing to us. The fear of the Work Compatibility Assessment, and sanctions. I have nightmares about the assessment...and I'm jumpy when the letterbox goes, in case it's my turn!

Sometimes I even feel scared to walk the little way I can on my crutches in case someone calls me a 'scrounger,' or looks at me with suspicion. It wouldn't be the first time so I tend to stay in my wheelchair now.

Disabled and ill people are dying in thousands, after being found 'Fit for Work'-


There are fake stories on DWP literature:


Is it any wonder that I feel the way I do? I'm luckier than most in so many ways, and I know that. My mum brought me up with the saying 'there is always someone worse off than you' and I try very hard to remember that, even when I feel awful.

This is the reality though. Government would have people believe that we are 'scaremongering' when we tell people about the impact Welfare 'Reform' has had on our lives, but we're not.

If were 'scaremongering', would the United Nations find it necessary to be investigating systematic abuses of Disabled People's Human Rights, as a result of Welfare Reform?


There has been no Cumulative Impact Assessment done by the government as yet into how Welfare Reform effects disabled and ill people's lives, despite repeated requests for one. Surely there should be? Surely it's the human thing to do?

The WoW (War on Welfare) campaign launched a second petition asking government to carry out this assessment.

Please add your signature to thousands of others, here:


As for wearing my condition(s)'on my sleeve,' even if I do, it's only because disabled and ill people have been put in this situation. If government and others made disabled people feel safe, secure and wanted again, it wouldn't be necessary.


Tuesday, 1 September 2015

The Reject Doll (Poem - 1996)

I've always been a reject doll
Left alone at night,
I'm the reject doll,
My legs don't work right.

The reject doll's in the window
Watching the world go by,
I have a lopsided smile
I can't cry.

I'm the reject doll,
Tossed to one side,
Friends said they cared,
They lied.

I've always been the reject doll,
Lift me up,
Put me down
See my wobbly legs,
Throw me on the ground.

I know that I'm a reject doll,
I've always been that way,
Listen to the reject doll
She has a lot to say.

Now I'm not a reject doll,
It's taken time,
But now I'm there,
I'm no longer the reject doll,
I've found someone who cares.

Now I'm not a reject doll,
There's a peace that lies in me,
The lonely little reject doll,
Can smile,
And know she's free.

Written age fifteen, five months after major orthopaedic surgery. During this period my depression was at its worst. I was trying to come to terms with my disability, learn to walk from scratch, manage school work and I was a teenager to boot! It was not an easy time, but I think some of what I consider to be my best writing was done during that first year or so after surgery.

Writing is great therapy and has always been my constant during even the worst times. I'm proud of the fact that even then I was determined those poems would have a positive ending.


Image: Google