For the first time in ages I have woken up without pain. In fact, I can't remember the last time it happened. It is an amazing feeling. I feel like a real person, human again. It doesn't matter that it is cold and cloudy outside. Inside I am warm and alive.
The best thing is that there is nothing there - absolutely nothing.
My body seems to be at peace today, and if this is what 'normal' is, I want to keep it. However, I know it won't last so I intend to enjoy every single second of it. I wish I could dance now. It would be lovely to be able to twirl around the room and express how free I feel.
It may seem silly, but Julie Andrews at the beginning of 'The Sound of Music' has got nothing on the way I feel now. In fact, I think I may sing about it too! Keep your fingers crossed that the cats don't join in!
I wish Colin was here to share it with me - he would make a very good Captain von Trapp I think.
No, seriously, it would be good. I feel light and happy. It could have been a "who are you, and what have you done with my wife?" day. Maybe I'll phone him at work and see if he can come home early. We could walk to the field and lie in the grass. Yes, I know it is cold and damp, but it might as well be summer to me.
I can't explain it any better. When you live with disability and pain everyday, the relief is just so beautiful, and it makes me feel so lucky. I appreciate it more than I can ever tell you.
Oh, this is so wonderful! I hope I can keep it - just for a little while.
#helenswriting
2
Thursday, 27 March 2014
Saturday, 22 March 2014
Mind the Gaps - A Fear Overcome. (Written 2006)
'The train now approaching the station is the eight fifteen, Bath Spa to Cardiff Central', the announcer said.
My mum squeezed my hand as we walked towards the edge of the platform. I wasn't scared of the thunderous noise as the train approached, not with my mum's fingers wrapped reassuringly around my own.
I wasn't even scared as a crowd of people hurried behind me. "Come on, step up," my mum said as the train came to a halt and its big doors opened. I did as I was told and stretched my little leg to bridge a gap between platform and train.
Suddenly there was a sharp pain through my knee, a cramping pain that ran right to my toes. I froze. "Mum," I whispered, "Mum". She didn't hear me. "Mum," I said, much louder this time. I couldn't make the gap. My heart was pounding. This time she heard me and to my relief lifted me over and into the warmth of the carriage. I took my place and the sense of relief was so strong. I nearly cried.
As I sat there, in the safety of the seat, my seven year old mind realised then and there just how different my life was from that of other people's. I remember the moment clearly. The memory of that train, pain, and the 'black gap' would give me nightmares for months and trigger a phobia that would last over fifteen years.
"Honey, I can't do this," I said weakly. We made our way to the edge of the platform. I trembled as the doors of the 8.53 to London Paddington opened.
"Don't worry love," Colin said as he stepped on ahead of me and held out his hand. "Just don't look at it." But I knew it was there and took a fleeting glimpse at the black hole between platform and train that was my nightmare. I swallowed hard, put my shaking fingers in his and stepped across.
Once in my seat the relief washed over me and as my hear rate returned to normal, I thought back to that day so long ago.
Just like before, I had what you would call an epiphany as I sat there, with my husband's arms wrapped around me.
It suddenly occurred to me that I wasn't scared any more. I had him and he accepted everything I was, disability and all. More importantly, I had accepted me. No longer a shy seven year old, realising for the first time how hard life would be, I was now twenty-five and married. I had lived, and I had done it the hard way.
What I'm trying to say, maybe not as articulately as I usually would, is that you can overcome anything. All you need is the guts to take a chance, and the most importantly, the love of someone who believes in you. Even if you don't have that from someone else, you can find it within you. If you have faith in yourself and take things step by step, you can do it.
While I'm here too, I will tell you, that I'm not afraid of those gaps anymore either, I just put my best foot forward...
#helenswriting
My mum squeezed my hand as we walked towards the edge of the platform. I wasn't scared of the thunderous noise as the train approached, not with my mum's fingers wrapped reassuringly around my own.
I wasn't even scared as a crowd of people hurried behind me. "Come on, step up," my mum said as the train came to a halt and its big doors opened. I did as I was told and stretched my little leg to bridge a gap between platform and train.
Suddenly there was a sharp pain through my knee, a cramping pain that ran right to my toes. I froze. "Mum," I whispered, "Mum". She didn't hear me. "Mum," I said, much louder this time. I couldn't make the gap. My heart was pounding. This time she heard me and to my relief lifted me over and into the warmth of the carriage. I took my place and the sense of relief was so strong. I nearly cried.
As I sat there, in the safety of the seat, my seven year old mind realised then and there just how different my life was from that of other people's. I remember the moment clearly. The memory of that train, pain, and the 'black gap' would give me nightmares for months and trigger a phobia that would last over fifteen years.
"Honey, I can't do this," I said weakly. We made our way to the edge of the platform. I trembled as the doors of the 8.53 to London Paddington opened.
"Don't worry love," Colin said as he stepped on ahead of me and held out his hand. "Just don't look at it." But I knew it was there and took a fleeting glimpse at the black hole between platform and train that was my nightmare. I swallowed hard, put my shaking fingers in his and stepped across.
Once in my seat the relief washed over me and as my hear rate returned to normal, I thought back to that day so long ago.
Just like before, I had what you would call an epiphany as I sat there, with my husband's arms wrapped around me.
It suddenly occurred to me that I wasn't scared any more. I had him and he accepted everything I was, disability and all. More importantly, I had accepted me. No longer a shy seven year old, realising for the first time how hard life would be, I was now twenty-five and married. I had lived, and I had done it the hard way.
What I'm trying to say, maybe not as articulately as I usually would, is that you can overcome anything. All you need is the guts to take a chance, and the most importantly, the love of someone who believes in you. Even if you don't have that from someone else, you can find it within you. If you have faith in yourself and take things step by step, you can do it.
While I'm here too, I will tell you, that I'm not afraid of those gaps anymore either, I just put my best foot forward...
#helenswriting
Sunday, 16 March 2014
Don't Doubt What We Are Capable Of (Poem 2014)
Don’t doubt what we are capable of
We’ll take your lies apart one by one,
Don’t doubt that we can,
Because we already have done!
Don’t doubt what we are capable of
Because we refuse to cower
Don’t doubt that we can do it
Words will be our power.
Don’t doubt what we are capable of,
Angry campaigners scorned
Don’t doubt that we will do it,
You’ll wish you’d never been born!
Don’t doubt what we are capable of,
Because you live for votes,
Don’t underestimate the strength,
Of a few well placed quotes!
Don’t doubt what we are capable of
We refuse to be ignored,
You think that you can trample
On the disabled and the poor.
Don’t doubt what we are capable of
Because you started this fight,
We’ll be making sure that you fall down
On election night.
Don’t doubt what we are capable of
You have tried to hide the proof,
You know there’s power in numbers
And we are telling the truth!
Don’t doubt what we are capable of,
Because your policies kill,
If even the law can’t make you pay,
The electorate will!
Don’t doubt what we are capable of,
We’re sick of living in fear,
But you will know what that feels like,
Come May next year!
Don’t doubt what we are capable of,
You cause suffering and spread hate,
When it’s our turn at the ballot box,
You will meet your fate.
#helenswriting
Tuesday, 25 February 2014
The Right Way -(Writer's Circle - Fifteen Minute Exercise)
“Not that
right, - the right right!” The instructor said, as I turned left.
“You should
hold your hands up...’ my mother would say ...”The one that makes an L....”
But that’s
not advisable when your hands are on the steering wheel!
I don’t
think writing ‘L’ and ‘R’ on my thumbs was a wise move for my first driving
lesson either. The instructor visibly paled as I got into the driver’s seat and
he caught me double checking them!
What’s even more
worrying is that all these months later, they still need to be there, only now
I have to paint my nails too – just to be sure! Black for the left hand and red
for the right...or was it the other way ‘round?
You know,
it’s funny. All those months ago my instructor didn’t get very thirsty at all
during our lessons. Now he carries a small black flask which he drinks from,
regularly. Although granted, his swigs are bigger after I’ve done the
roundabout in the centre of town.
Lately as I
know how thirsty he gets, I’ve started bringing cans of Coke for him. I like to
be helpful, and there’s nothing worse than being thirsty is there? When I told
him that, he muttered a swear word – or several!
Anyway, I
think I’m improving a bit. Now I’ve worked out that if I go in the opposite
direction to what he says, then I’ll be going the right way. It seems to work,
well, so far anyway!
I wonder if
he’s booked my test yet?
Image: Google
'Family Guy'
#helenswriting
#helenswriting
Saturday, 22 February 2014
ATOS Quits - A Reaction
Personally, I don’t know why some people are getting excited that ATOS have given. ATOS is only part of the problem. The whole POLICY needs to stop! The SYSTEM is flawed. Until that happens, I can’t celebrate anything.
It’s funny how, yesterday ATOS itself said the SYSTEM was failing, and yet in all the media coverage I have seen today, they have blamed a hate campaign against staff.
There is NO EVIDENCE to back that up! If there is, then show us!
Also, where were the BBC during the protests this week, when the TRUTH was being told, about the pain, death and suffering this government, and ATOS are responsible for.
Where was OUR media coverage, when the damage ATOS (and the DWP) have done, was being talked about? NOWHERE!
Yet today, the BBC and ATOS are blaming 'death threats,’ and US, YET AGAIN!
In none of the coverage I have seen today, have they even tried to explain WHY disabled and ill people are angry, and the DAMAGE that is being done to our lives!
The BBC claim to be balanced and independent. I don’t think so! To me, they are spouting government propaganda (AGAIN)!
When this whole Welfare Reform policy is scrapped and replaced by something compassionate, fair, and that allows for variations in disability and people, is when I’ll be celebrating!
Wednesday, 5 February 2014
An Afternoon With Karen (A Short Fantasy Piece)
The school
hall looks like it has seen better days. The once polished wood of the stage is
now caked in dust. My footsteps click loudly on the floor and break the eerie
silence that hangs over the place. I walk to one of the windows and peer out of
it.
Twilight has descended and the hall is in darkness. I turn around and see her sitting on the edge of the stage like she has always been there. Oddly, I am not afraid as I walk over and perch next to her.
We sit in silence for a while. It is a comfortable one. The kind you get when two old friends meet again. I think of all the hours I have spent singing Carpenters songs, and suddenly everything I've dreamed about asking Karen disappears from my head. I find myself asking simply, "Are you happy?"
She considers me for a second and then smiles. It is not the smile from the album covers or the interviews - this one is real.
"Happier now than I was in life. Things are easier, more peaceful. I feel more real now than I ever did then."
I instinctively reached for her hand. I don't know what made me do it, but humour flashes in her eyes when all I feel is a cold blast of air.
"Bad news I'm afraid. I'm still dead!" For a moment I am mortified but I catch her eye and like a couple of schoolgirls we dissolve into a fit of giggles.
"Oh," I said eventually. "I was going to ask you all sorts of technical questions about increasing volume when you sing, breathing problems and all those boring things but they don't seem to matter that much now".
Suddenly, for the first time that afternoon, I become really aware that I am sharing space with the woman I have idolised and shared unspoken ties with for most of my life. I become tongue-tied and very unnerved. I am sitting in what is now pitch darkness with a ghost.
"What's the matter? After all the hours we've spent singing together, don't tell me you're afraid of me."
"Not afraid exactly," I reply, my voice quieter than usual, as if all the air had been taken out of it. "It's just . . . are you really here, or have I finally lost the plot?"
"I think the jury's still out on that one," she replies, smiling again. "You're the one writing this, you tell me!"
"Well thanks, you're no help!"
As soon as I say it I curse myself. Actually, she doesn't know how much help she's been. From the hours of joy the Carpenters' music has brought to many people, not to mention that her death has saved so many lives.
I look at her again. "Sorry, I just freaked out for a minute there!".
"Understandable. I think I would too". She stands up and dusts down her flares. "Listen, I need to go."
"Oh, OK," I reply, feeling more than a little sad but I hide it well. "Don't tell me, you have a date with Elvis." She looks at me, her eyes sparkling with laughter.
"Oh, no. I turned him down. This one's much more fun... "she whispered conspiratorially, "James Dean!"
I giggle. I have always hoped that in death, she has found peace somewhere. The idea of the 'good girl' and the young rebel was wonderful.
And as she turns to walk away towards the back of the stage I call her back. "Karen..." She turns, "...Thanks".
"No problem," she answers quietly. "Thank you for singing with me."
With that, she walks to the back of the stage and disappeared into the shadows.
Twilight has descended and the hall is in darkness. I turn around and see her sitting on the edge of the stage like she has always been there. Oddly, I am not afraid as I walk over and perch next to her.
We sit in silence for a while. It is a comfortable one. The kind you get when two old friends meet again. I think of all the hours I have spent singing Carpenters songs, and suddenly everything I've dreamed about asking Karen disappears from my head. I find myself asking simply, "Are you happy?"
She considers me for a second and then smiles. It is not the smile from the album covers or the interviews - this one is real.
"Happier now than I was in life. Things are easier, more peaceful. I feel more real now than I ever did then."
I instinctively reached for her hand. I don't know what made me do it, but humour flashes in her eyes when all I feel is a cold blast of air.
"Bad news I'm afraid. I'm still dead!" For a moment I am mortified but I catch her eye and like a couple of schoolgirls we dissolve into a fit of giggles.
"Oh," I said eventually. "I was going to ask you all sorts of technical questions about increasing volume when you sing, breathing problems and all those boring things but they don't seem to matter that much now".
Suddenly, for the first time that afternoon, I become really aware that I am sharing space with the woman I have idolised and shared unspoken ties with for most of my life. I become tongue-tied and very unnerved. I am sitting in what is now pitch darkness with a ghost.
"What's the matter? After all the hours we've spent singing together, don't tell me you're afraid of me."
"Not afraid exactly," I reply, my voice quieter than usual, as if all the air had been taken out of it. "It's just . . . are you really here, or have I finally lost the plot?"
"I think the jury's still out on that one," she replies, smiling again. "You're the one writing this, you tell me!"
"Well thanks, you're no help!"
As soon as I say it I curse myself. Actually, she doesn't know how much help she's been. From the hours of joy the Carpenters' music has brought to many people, not to mention that her death has saved so many lives.
I look at her again. "Sorry, I just freaked out for a minute there!".
"Understandable. I think I would too". She stands up and dusts down her flares. "Listen, I need to go."
"Oh, OK," I reply, feeling more than a little sad but I hide it well. "Don't tell me, you have a date with Elvis." She looks at me, her eyes sparkling with laughter.
"Oh, no. I turned him down. This one's much more fun... "she whispered conspiratorially, "James Dean!"
I giggle. I have always hoped that in death, she has found peace somewhere. The idea of the 'good girl' and the young rebel was wonderful.
And as she turns to walk away towards the back of the stage I call her back. "Karen..." She turns, "...Thanks".
"No problem," she answers quietly. "Thank you for singing with me."
With that, she walks to the back of the stage and disappeared into the shadows.
Image: Google
This piece was written as a writing exercise - 'Meeting Your Idol,' I think it was, (or something similar). Written in 2011
#helenswriting
Wednesday, 15 January 2014
Local MP Ignores the Plight of Disabled Constituents - My Response.
Dear Mr Rees –Mogg,
I was very disappointed to find that you and one other MP
voted against an inquiry into the effects of the government’s Welfare Reform
policies.
As a disabled person, long time disability rights activist,
and one of your constituents , I find your actions heartless and short- sighted
to say the least.
While a hundred and twenty five of your fellow MP’s
(finally) voted for an inquiry into these damaging, divisive, and
compassionless policies, you wanted to ignore them.
You wanted to ignore the plight of disabled people, 10,700
of which (at last official count) have died
after being wrongly found ‘fit for work’ by ATOS, many through suicide.
You wanted to ignore the devastating impact of Bedroom Tax,
which has contributed to a rise in homelessness and hardship across the country.
You wanted to ignore the many families who can no longer
afford to put food on the table as a result of the brutal benefit sanctions
your government has imposed on some of the most vulnerable in society.
You were elected to represent all the people of Bath and
North East Somerset, both the successful and the disaffected, and as a disabled
person, you have failed me, and others like me.
May I take this opportunity to remind you that many of the benefit
claimants you have chosen to dismiss, are in fact ‘in work,’ but they need the
benefits to top up disgustingly low wages.
Contrary to what your government may have the rest of
society believe, being on benefits is not a ‘lifestyle choice’. It is a heartbreaking
necessity for most.
I have had Cerebral Palsy since birth, and as you know when
I spoke to you on the phone (virtually in tears), I would give anything to live
a ‘normal’ life. I’d love to be able to be a mother and manage a full-time job,
but because of my disability and related health conditions I simply don’t have
those options.
It breaks my heart to know that the government is
systematically punishing, victimising and destroying the lives of people like
me.
It is something that damages my faith in democracy. It is depressing to
know that my MP lacks the empathy and understanding (despite the ‘Christian’
virtues he always espouses) to at least support an inquiry into where the
policies are hurting people in the name of a conservative ideology of dismantling
the state.
Disabled people and those at the lower end of society are
being ignored, lied about and blatantly bullied by the government. But it is no
surprise that those like yourself who are staunchly very much on the right wing
would not want those things exposed in any inquiry.
Yours sincerely
Helen Sims
Disability Rights Campaigner
Full Transcript of debate (from Hansard), including vote results.
This letter was sent to the local press on 14th January 2014,
Please help me by sharing it widely.
#jrmfails
Image: Google
(Somerset Guardian Article - of this blog)
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