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Saturday, 17 December 2016

Walkies!


Managed a little walk (just to the end of our road) at the expense of my back, and (already troublesome) hips, but it was worth it.

Perfect walking weather - if there is such a thing! Refreshing, but not cold - (or too warm). Either extreme causes problems.

Saw the little black cat at the end of the road, but he ran away from me - (A wise move, hubby says because said cat is likely to be catnapped by a certain Mrs Sims, who misses feline company)!
Ran into a neighbour on her way to the shops.

If I had been in the wheelchair, I would have been perfectly happy to stop and talk to her.
As it was, I thought 'Oh please, nooooo', and then felt guilty, especially since every year (even since her husband's death), she makes sure the 'neighbourhood Christmas Tree' still gets its lights, and that makes me happy.

We did say 'hello' but luckily for me (and my hips), she seemed in a hurry. Even so, by the time I got back down I was in agony and my breath was a bit raspy. It isn't usually that bad, but I had to use my breathing technique for the last little bit, to minimise pain.

It's a technique we were taught in hospital (when I was learning to re-walk). 2/3 normal breaths and a few more shallow breaths, and then a large exhale, and so on. It takes a bit of practice to get right, (and it doesn't always work), but I find it helps me - even if it is just because I'm so focussed on breathing that I'm less aware of the pain. It could easily be that.

We were also taught 'ways to fall' in order to minimise damage, which I almost do automatically now. Although it doesn't always work, because things happen in a split second. Making sure you let your hands (rather than legs/body) take the impact isn't always possible.

When you re-learn walking you have to focus on every step, and there is a part of me which still does that now too, and that is how I manage not to fall often. You become conscious of potential obstacles, different floor types, ground types, and distances.

All of these things I have to think about while I'm walking, which is why I find it difficult to walk and talk at the same time, and why I get so tired, not just physically but mentally too. My mind has to be in so many different places at the same time.

Over the years I've become better at making those judgements, so that I can count my steps as well. Although I only do that on familiar terrain! Counting steps is useful for forgetting about distance. If I focus on the count, the distance is less significant.

One more thing I do, is to mentally divide and mark the ground, (especially if the pain is extra bad). I will aim for the end of each section and not think past that. It's a bit like identifying landmarks. In fact that's exactly what it IS.

Aim for a fence post, the end of a car, a manhole cover, a mark on the pavement or a piece of rubbish, anything like that. It is all second nature now - but as I'm losing what little mobility I have, many of these things won't be as necessary...
Anyway, that's how things are.
Today has been good, and it is Saturday. You know what that means?...WINE!














(Image: Google. - I thought pictures of walking aids were a bit obvious. I prefer the cat)! 

#helenswriting



Tuesday, 6 December 2016

In the Box...


I'm lying awake making a mental list of things I could put in a box and give to a homeless charity (or homeless person).

So far, I've come up with: Blankets, some pairs of gloves and socks, some chocolate, (I know that foodbanks are always afraid to ask for that, because it is seen by the public, as a 'luxury' item), some fruit, flasks, biscuits, woollen hats, 'Lemsip' type things, (I figure they could give them to people who need them, as and when).

I know they need hygiene products, so I'll try and add those,

Maybe they need pillows too? Maybe teddy bears for homeless kids? I don't know.
I quite often wonder about these things. It doesn't really help me with sleep much, even though it could be seen as a different version of 'counting sheep'!

I have always hated the fact that people only seem to think of the homeless when it is near Christmas time. I find myself thinking about them when it rains or it is cold outside!
It makes us the biggest bunch of hypocrites! 'Oh it is Christmas! Season of 'goodwill to all men', but as soon as it is over, it is all forgotten, and we get on with our lives.

I remember a couple of years ago, hubby and I were in Bristol, (walking through 'Broadmead'), when we saw a homeless man sitting outside a shop. I didn't have any money on me at the time, but I said "hello" anyway.

He looked so surprised, (and said "hello" back). The fact that he was so surprised to be spoken to hit me quite hard. He was obviously used to barely being acknowledged!

I thought 'Actually, that is the saddest thing. The fact that anyone is in that situation in bad enough, but the fact that they almost cease to be people worth acknowledging, is worse!

It's very similar to what is happening to disabled and ill people now. We are nameless 'scroungers'! What we are facing at the hands of government policy is barely acknowledged, and neither is the fact that we are dying in thousands, as a result.

None of this should be happening...should it?











(Image: Google).

#helenswriting

* This is not intended to be a 'Look at me, aren't I wonderful' post. This is a diary entry - written late at night, and I thought 'Maybe this makes some valid points, so I thought it was worth sharing).

Thursday, 3 November 2016

A Birthday Wish - Scrap the Work Compatibility Assessment.

What do I want for my birthday? 

It's a question I dread because what I want, what I hope for,- what I really need, can't be bought.

All I want is the Work Compatibility Assessment to be scrapped,  so that no one else (including myself), has to fear it.

We are human beings! We don't choose disability and illness but we have to justify ourselves for the right to basics, independence, dignity...LIFE!
Most people take those things for granted. They can feel safe, wanted and valued in society.
They are not being demonised, lied about and scapegoated by our government, and a mainstream media that is happy to do as it is told rather than report the TRUTH!

Thousands and thousands of people are dead as a direct (and indirect) result of government Welfare 'Reform' policies! Countless more are being left with nothing!
Just because you don't see it on the news or in the papers, it doesn't mean it isn't happening. Likely (if it isn't happening to you), it will be happening to someone you know.
People are living in fear of the letterbox in case it is their turn for assessment. People are having nightmares about that assessment. Nightmares full of judgement,darkness and fear.

I know, because I am having them myself. 

In my case, I'm more frightened of the assessment than the outcome.
It doesn't matter how much I think I know or how much advice I get to try and be prepared. It is still there.

I have Cerebral Palsy which means I cannot walk or stand unaided. It is a condition which won't improve, and actually has started to deteriorate due to constant 'wear and tear' on my body. 
Waking up from yet another nightmare, my muscles are tense and in spasm, which only adds to the (more or less constant) pain I am already in.

I was given (what was) 'Lifelong' Disability Living Allowance in recognition of the fact there would be no improvement in my condition.
At some point soon, I will still have to face assessment in order to qualify for Personal Independence Payment.
When you suffer from depression and anxiety already (as I do), the worry is compounded. The constant 'scrounger' rhetoric hasn't helped either! I am not a 'scrounger' - I am a person, and I didn't ask for this,

I know I am luckier than a lot of people in that I have support. There are countless who are in far,far worse situations than myself, but what I want for my birthday, (the only thing I really want for my birthday), is that NO ONE should be having to go through this in a wealthy society.

Despite what government and media would have you believe, we ARE a wealthy society. At least we should be able to support people that need it.

The fact that we (apparently) can't is not the fault of those who already struggle, it is the fault of those at the 'top'. Why are we paying the price?!

Disability or illness can happen to anyone at any time. No one is immune. I think it is easy to forget that. It is easy to take your ability, your health, your freedom and that of those closest to you for granted, but all it would take is a few seconds or being in the wrong place at the wrong time, and your life could change.
In an ideal world, what I want for my birthday (or a point very soon), is for all this to stop! Unfortunately though, I know it is too much to ask.





#WCA

Saturday, 1 October 2016

Being Realistic - A Response To The Scrapping of E.S.A Re-testing

Today, some big disability campaigning groups are celebrating because re-testing for ESA (Employment Support Allowance), has been scrapped, for those with long-term conditions.
'They' think it is because of their pressure and 'power'!

As a person with Cerebral Palsy, and a 'campaigner' for twenty seven years, I'd like to put forward (what I see as) a more realistic opinion. 

Although these days, the opinions of lifelong campaigners (and those with lifelong disabilities, are often not considered). Those who shout loudest get heard.  

In my opinion , it was not not a 'win' -for several reasons:
1. Only one 'benefit is effected. Those who are on PIP or still waiting for changeover from DLA to PIP (which includes myself and SOOOO many others, are still in the same situation as we were yesterday.
Those of us with lifelong conditions/ 'lifetime' awards of DLA, are STILL facing retesting -and FEAR.
For me, it is NOT any sort of victory until EVERYONE is safe -and that includes from things like Bedroom Tax and Universal Credit TOO!

2. The reality of it is that most likely that the backlog/cost of repeated retesting/assessments is getting even more out of hand. When you add the appeals process to that, (and the fact that so many people are getting DWP decisions overturned), they realise they cannot deliver, so they acted to cut the backlog.

3. Every assessment costs MORE THAN IT SAVES. By the time you take 'Mandatory Reconsideration' and any appeal tribunal into account they are losing money -(which we did point out)!

4. The government claim that they have done this to cut down on OUR stress! NO. If that was the case, it would have been done in all the years before, It hasn't been, so why now? Because it suits them! It differentiates clearly between Cameron's leadership and that of Theresa May. It makes the new leadership LOOK compassionate and inclusive. It's all PR! It has NOTHING whatsoever to do with us!

5. How do you know that they're not just throwing us a bone to distract us, - while they plan something worse and hit us with it later? It wouldn't be the first time! Also, where's the confirmation of how and when this is going to happen - from sources other than media? As yet I haven't seen any. There are no firm details on anything YET.Misinformation is rife - and I for one, am inclined to take everything this government says or does, with a large pinch of salt! 

6. At this point also I would like to mention that it was only a few days ago Labour announced it would scrap reforms on assuming power. Could it not be that this government are getting in first, in a bid to secure re -election in 2020?!

Just some thoughts!  

Likely I will be accused  be of 'trouble-making' (once again), by daring to offer a different opinion, but I'm going to say it anyway! 



Monday, 5 September 2016

Marbles...

Coloured marbles
Lost and found,
Every time they break 
I'll stand my ground.
If I had a colour
For every hour that went,
My currency in marbles,
Rainbows spent.
Let’s hear it for the marbles
Shake them and they roll,
For every day wasted
Will take a toll.
















Image: Pinterest

#helenswriting

Monday, 29 August 2016

Tomorrow Will Be Better!

"Do you want to know how I know you're feeling low, other than the fact you're withdrawn"?
"Mmm"

"You're playing Solitaire on the computer. You always do it."

"No I don't..."

"You probably don't even realise that you do it, but it's a give away!"


So, I thought about it, and I realised hubby's right. I think it must be that it is enough of a distraction so that I don't have to think -when there aren't any other ones.

The thing is if I knew what was wrong, I could TRY and take steps to correct it - but I don't. There's not one thing I can put my finger on, anyway.

It's the usual feelings that campaigning brings about, it's fear of the future, it's missing my family, it's writer's block, it's the book and it's just feeling yucky all the time and not being able to do much about any of it.
All of these things are going around in my head - all at once -and the relentless struggle against pain, disability and hormones don't help either.


Every time this happens I have to try really hard to remind myself that it is temporary, and that I will (and can) feel better. 

I know that I have to just allow myself to feel all those things, and know that it passes - or at least gets easier.
The knowledge that I am my own worst enemy and that only I can change that, should help but it doesn't. How do you fight against yourself?!

I know that this is only a 'rough patch' rather than a full on slip back into depression because I can still see the wood for the trees. I'm aware that things WILL get better.

The times when I've been really ill, that has disappeared and so has the energy to fight it. I'm not going to let that happen.
Everyone is entitled to a bad day aren't they?

Tomorrow will be better. 










Image: Google

#helenswriting

Saturday, 27 August 2016

Reality Bites! -(Short Poem)

Reality TV numbs the brain, you know,
Just another hyped up show!
Shallow subjects
That thrill Joe Public,
They really make me sick!
Edited, Unreal,
They manipulate how we feel,
But still
We fall for it.
Faces, bums
Vacuous and dumb,
That fill hour after hour.
A mass distraction,
Showbiz attraction,
Plays right for the hands of power!














#helenswriting
Image: Via Google.

Thursday, 14 July 2016

Taking Steps...A Dream, A Book, And an Evening to Remember!

My book launch Party was amazing! – (Yes I know I kept the existence of the book quiet, but the way campaigning works these days, I knew I’d be opening myself up to all sorts of allegations and misconceptions about my motives).

 We held it in a newly opened local cafe called ‘Essence’ (in Midsomer Norton) It is an arty, colourful place. Paintings line the walls, and they make the most gorgeous chocolate cake!

I started to write (or at least have the idea for ‘Taking Steps’ when I was still at school and in fact several early drafts were put together then too but for one reason or another, it never came to fruition.

I’m glad of that, because having to wait until now means that it is the best (I think) it can be.
It’s taken over twenty years to become what it is. As I have grown up and experienced more of life it has grown with me, - so to say for example that I ‘stepped back from activism’ to work on it, would be hugely inaccurate. The two work in tandem whenever I’ve been able.

My motive was (and still is) primarily to raise awareness of disability in a creative way, but actually as time went on the book became about more than just disability. It covers many issues including mental health, childlessness, and activism. I would have written anyway – disabled or not, and I think there is more to my writing than that.

I didn’t write it for money or ego purposes. The book and the ideas behind it were part of my life from very young –and I don’t expect to make money out of it. If that was a consideration I wouldn’t be struggling to do Public Relations type stuff (although I have to do a little).  There is something about that side of it which makes me uneasy – for lots of different reasons.

I wouldn’t want you to think either, that it’s a depressing ‘woe is me’ type book. I don’t think it is. It includes fun short stories, articles and commentary on everyday issues too. Maybe as such it is a bit difficult to categorise.

Anyway, back to the launch!

My favourite English teacher-(who always believed in me and gave me confidence) walked in, and I started crying! I shed a lot of tears that night -all of them happy.
She said, "I knew you'd do it", and gave me a hug, then said, "but you embarrassed me by dedicating it me". I replied, "I kept a promise, and I wouldn't have done it if it wasn't for you believing in me, and all your little tricks to keep me at it". "Yes you would" she told me, firmly. 

I’m not so sure! I’ve always been plagued by self doubt, and I’m not as prolific a writer as I’d like to be, - mostly because of that and the fact I’m a bit of a perfectionist. Also, a lot of the time I feel too ill or am in too much pain to write, so I have to do it as and when.
She and I just clicked and I was so lucky to have her teaching me because her enthusiasm for the subject, for Shakespeare, for theatre, and for words was infectious!

Another English teacher was there too, and she hasn't aged a single day! (Yes I guess I was one of those English Department swats who spent many lunchtimes and break times talking to teachers or sitting in the corner of a classroom...writing)!

Everybody gave me lots of hugs, cards, flowers and wine! A friend bought me a necklace (with a tiny pen, notebook, and footprint charms attached) which I admit I didn’t take off for forty eight hours afterwards.

I probably would have slept in my dress as well if I hadn’t been so scared it would tear! The dress is a floaty, strappy number of grey, pale blue, pink and brown (and so much nicer than it sounds)!

Everyone was so lovely to me and having them there meant more than the book did. Maybe I shouldn’t say that though!
Anyway, the speech was predictably nerve -wrecking and I could feel myself beginning to shake inside, so I didn't say all that I wanted to. I think it went well enough. My family filmed it but I haven’t worked up the courage to watch it back yet.
Later I was told,

.”When you talked about what's happening to disabled people (in your speech) people's jaws dropped”.
I couldn’t miss a chance to raise awareness of the hardship, struggle, sanctions, ‘scrounger’ rhetoric we’re facing as a result of government policy, After all, it’s what I do (and what I’ve always done). Disability rights is part of who I am – and it’s not like it isn’t covered in the book- (at least in places).

My family were so happy too, and I felt all was right in my little world
The food was lovely, the atmosphere was all cosy and I felt so lucky to have so many people I loved all together.

The book made that possible, so I owe IT a lot. 

I hope that it does raise awareness, as well as showing that something good and positive can come out of bad things. I didn’t choose my Cerebral Palsy, but I can choose to use my experiences to help (and hopefully entertain) others.





#TakingSteps 
#HelenSims
#Helenswriting


*Taking Steps' is Available from Amazon, and you can keep up to date with the latest news on Facebook:



And Twitter:


Saturday, 30 April 2016

It's The Little Things...



I love the way the sun reflects on our living room wall, filling the room with light. I can go from feeling low, to being bright as soon as I enter the room.

I love to sing. I’ve been singing for as long as I can remember. For stress relief it’s amazing.  The tension ebbs out of me, and I feel like I can take on the world. Music is a big part of my life, and it’s a place I go when I need to escape.

Watching snow fall is one of the most calming things there is. I wish for it regularly because it’s a great leveller. No one else can move properly either! I think it covers normality (or what people perceive as normality), with a beautiful white blanket – at least for a little while.

New notebooks of all shapes, colours and sizes. People closest to me know that if they want to buy me a present (besides chocolate or wine) then a notebook or pen is their safest bet!

I get a sense of promise from a pristine notebook. I know that I can fill it with anything I choose. There is always a notebook with me.  

I think most people who write,( or otherwise create something) need somewhere to put the random sparks that fly through their mind - even if the ideas come to nothing, at least they're there.

That brings me on to writing. I could go on forever about this – in fact I have in other places. Here though, I’ll try and be brief. I wrote my first short story when I was eight. Even before that I was asking my Mum to take notes from books on different subjects, so I could write my own versions.

Writing is my constant. I guess it is another form of escape. Whatever situation – physical or emotional state I have been in I know I can go somewhere else, either in my imagination or with a paper and pen.

There is a sense of satisfaction in knowing that I can create something from nothing –another world even, and if I do it right I can take other people with me too! I can try and help them understand things, and feel things.

I have always thought the best writers are the ones which can evoke an emotion or a sensation in the reader, and really connect with them. I hope to do that on some level, (at least sometimes)! There is nothing like the buzz I get when I write, or finish a piece (and I’m finally happy with it)!

Spending time with people I love - Suppose you could say that's an obvious one, and it is. I'm a ‘home bird’. While sometimes I  think I want to travel more and experience new things, I know I’m just as happy being at home, and having a long chat on a Saturday night or drinking wine and reminiscing.

Time with people they love is denied to so many and it is like treasure to me. That probably sounds soppy,  but  if you have got people who love you, (and you love them), you have got the world...and no, I haven’t been drinking I promise. It’s just the truth!


Tea is my ‘wonder drug’! If I’ve had a horrible day the first sips of tea slip down my throat and I can feel (at least some of) the strain leaving me. There is something lovely about cradling a warm mug, especially on days when it’s raining or bitterly cold outside.


I’m so grateful for my home. As soon as I step through the front door, I feel safe, warm and wanted. I can be entirely myself. There are no expectations here, no demands, no feeling of not being good enough. 

There’s just my husband, and I. It’s our space. Maybe this too seems obvious but with homelessness rising, I’ve become even more grateful for it than I was before. It’s a place of calm and quiet. 

Material things don’t matter ,at least not to me, and we have all that we need. What matters to me is peace. I find that here.



 
#helenswriting
Image - Google


Monday, 18 April 2016

Childlessness -One Day at a Time. (A Diary Entry).

I was very low and frustrated overnight. A close friend  will give birth to her first baby any day now.

I have asked all the right questions, the way you're supposed to! She knows me well enough to know that it's hard, and said 'you don't have to ask'. What am I supposed to do? Act like I don't care, pretend it's not happening?! That's not fair to her. Of course I care!

What makes it harder for me though, is that I thought she (was) the least maternal person you could ever wish to meet. She just wasn't interested at all...but then she got married and her blasted biological clock kicked in, as it does.

I know a lot about biological clocks. I'm permanently at war with mine, and there are reminders everywhere I turn, from adverts on television, to social media. Sometimes it can feel like a conspiracy. The world has a secret that I'm not allowed to share. 

Realistically I know that even if it wasn't unlikely I'd go full term and not 'possibly' dangerous for me, I physically could not cope with motherhood.

Due to the fact I can't walk or stand unaided, (as a result of Cerebral Palsy) I'd find it difficult to pick the baby up and I wouldn't be able to rescue a toddler from potential danger.

On top of that,I'd be even more exhausted than I am now, plus I would worry about how my limitations, (and depression) would effect a child. It would break my heart not to be able to do so many of the things other parents take for granted, although I know there are ways and means...

Not that I'm saying disabled people shouldn't have children. Of course we should - but with our age gap too, there's a high possibility I would end up alone -even if hubby did want any more children.  

It's all very complicated, and most of the time I can be fine with it, (at least on the surface), It's a different story underneath. It doesn't stop hurting. Like so many other women (and men), I have to find a way to live with it.

Last night though, I was lying in the dark, my hips were killing me and it all just hit me in a massive wave! Hubby was asleep in the next room. We often sleep apart now, because my (chronic) insomnia coupled with his snoring is not conducive to a good night's sleep for either of us!

I got up and wandered aimlessly around the house, and then sat on the sofa in the dark for I don't know how long. I've tried on line childlessness support groups, but I find them frustrating. This is going to sound wrong, but there I'm surrounded by people for whom childlessness is the only issue. 

They don't have disabilities to contend with as well, so their situation is the centre of everything. Not that that is wrong, (and I understand their pain completely) but if I'm honest, sometimes I've  ended up thinking ' you're lucky that this is all you have to contend with'...and then I feel intensely guilty for thinking like that! I had to leave the groups because they were just too confronting for me.

The thing is, I don't want my disability or my childlessness to define me or my life. I want to move forward and just be myself, and I know I'll get there one day. 

I'm already further along the road to acceptance (of both situations) than I ever thought I would be, but that doesn't mean I don't feel completely ripped apart sometimes. I don't know if I'll ever fully accept it. I don't know if I ever can!

There are times when I don't feel like a 'real' woman because of these things, and in that way I'm at war with myself too - but I don't want to be at war with myself, so I try very hard to take everyday as it comes, and make something good out of my life - because it IS good!

Hubby has made me happier than I ever thought I would be, and I KNOW I'm so much luckier than a lot of people, so I try not to take anything for granted - but by not taking anything for granted, I'm super aware of what I have to lose.
I'm super aware of everything actually. I can pick up on the emotions in another person, and I can sense things. 

Of course, then comes the guilt! I know how lucky I am, so I feel guilty for feeling sad and frustrated about the things I don't have! Mum always tells me 'There's always someone worse off than you', - and she's right!
 Also the multiple anaesthetics I had when I was fourteen (during multiple surgeries to improve my mobility) has meant my serotonin levels are damaged - so to a certain extent I have to allow for that - and I know I'll be on anti-depressants for the rest of my life.

All I can do is hope that it really does get easier and that that I'll be OK until it does. I just have to hang on in there, and take one day at a time.

After all, that's all any of us can do.






Sunday, 10 April 2016

Spring Harvest...!

'What are you doing in there'?
'Attempting to shave my legs!'
'I see. See you in three hours then'!
Cheek!

(As usual though, I had to ask him for help in the end.Having Cerebral Palsy and being unable to walk or stand unaided means I need help with things that able-bodied people can take for granted).

The thing is, I've never understood how 'real' women shave their legs! I can manage most of it, granted, but the backs -almost impossible even with a mirror. I think you have to be a fully trained acrobat to get anywhere!

The 'real' woman thing makes hubby quite cross. I find myself using the term more often than I should, but the brutal fact is, often I don't feel like I am one.

I listen to your everyday woman complaining about their kids. - (I can't have any), the amount of housework, (I do as much as I can, but can't manage a lot of it -not without being absolutely exhausted afterwards, -if I can manage it at all), queues at the supermarket, (supermarkets are a novelty for me because I so rarely go), make-up (I don't wear any. Such an unnecessary thing -even if I could apply mascara without my hands shaking).
All these things make me feel like a failure in the 'woman' stakes!

Sure, I've got all the feminist ideas and I TRULY believe that you don't need to measure up to these stereotypes -mostly.

Hubby says 'stop all this 'real' business. You're more real and true to yourself than those who walk down the street caked in make -up'. He also says I don't need it anyway, (I paid him to say that)! tongue emoticon
But you see, I envy women who CAN wear high heels and a short skirt. If I wear a short dress my splints are visible and people stare -even though they pretend not to! Some days I think 'yeah, whatever! You stare away love' and I feel confident enough to wear a short dress in public.

Of course I wear them at home - because I don't wear the splints if I'm not wearing shoes. Hubby says I've got 'great legs'. He's lying! I used to have better legs than I do now. The endo and PCOS has made me gain a bit of weight - and I will forever be grateful that hubby doesn't even think about my scars. They're barely visible now, but that's besides the point!

The fact is, men can be shallow (as can women, I know) - but men judge more on appearances than women do. It's biology!
Hubby says, 'I didn't fall in love with you to do my housework! I fell in love with you for YOU. Your difficulties are a part of you but they AREN'T you'!

I fell on my feet when I met him, because he sees all my many flaws, and loves me anyway. He even thinks I look good first thing in the morning! I know, he's a 'keeper'!

I love him too - so very, very much.

(He'll hate the fact I've mentioned him in this blog, too. Ooops)!

















Image: Pinterest

#helenswriting

Sunday, 3 April 2016

Queen of New York City

I was supposed to be Queen Though I work in a coffee shop, I’ll add extra sugar and put sprinkles on top! They threw me out, 
I was not what I was meant to be, I called for abolition of the monarchy! They wanted someone to wear gowns with a tiara Not flannelette Pyjamas And smudged mascara! I don’t want round the world trips To smile and shake hands I’ll take unplanned road trips in the back of a van! They wanted someone quiet and apolitical Turn up, make speeches Thoughtless, hypocritical! I’d have to marry elite, Keep the bloodline pure, Forget ‘who brought me home?’ I’m not really sure! I don’t want to be a rich bitch I would always say things I shouldn’t, I’d rather give up the throne Than be something I couldn’t.


























#helenswriting
(Image: 'Pinterest)'





Tuesday, 29 March 2016

The Road to Acceptance

In my early days of campaigning, (before I called it that),I went to 'Gateway Club' on a Thursday night, and met a volunteer named Karen.

One evening we sat on the bench outside the hall, and I told her what I was going to try and do.
She sat in silence,nodding occasionally as little me told her how I wanted to make things better and help people understand disability.

When I'd finished, she gave me a hug and said, 'I hope you can. You'll have your work cut out. You might find it harder to be listened to because you have a lifelong disability.'
I didn't understand what she meant, but I didn't really want to question her further because she seemed sad.
Karen only came for a few more weeks, and then I never saw her again.

Now, nearly twenty seven years later, I know she was right. Nobody listens to 'lifers', because in their eyes we haven't lost anything and we are 'used to' our lives.

People newer to disability or illness feel like they have lost everything, so they shout louder and they often belittle and ignore the experience of lifers because we haven't had it - (strength, health, ability, life),- so what do we know about what it feels like to lose?

That's where they're wrong. We know. We spend a lifetime grieving for what we've never had and never will have. We watch people newer to disability or illness, with their children, or talking about jobs or experiences we can never have. Do you really think that we don't know what it's like to feel the pain of loss? Are our experiences of life and how we're (still) coming to terms with it, any less valid than yours?

We're all on the same road of acceptance! Don't make the mistake of thinking that we're used to it, and therefore we don't hurt. I hurt everyday because I can never have the life I would have wanted.

Cerebral Palsy is lifelong for me. It won't get better. As I age I will deteriorate further, and I constantly (like those new to this), have to find ways to do things, ways to cope and ways to accept my life. You don't just wake up and say 'everything is easy now', 'I'm fine with it'. It doesn't work that way.

Everyone is worth listening to. It doesn't matter if this happened to you last week or at thirty years ago! We've all got to accept something we didn't choose. We should be helping each other





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