Thursday, 30 August 2012

Can You See Me? (Poem - 2009)

For a few precious moments
I escape,
Into my perfect world.

I'm drifting
Clad in silver
Over a vast ice rink.

I don't feel
I don't think.
I'm right there,
Can you see me?
The real ice queen
I was meant to be.

For a few precious moments
I escape,
Into my perfect world.

I'm singing
This time,
Centre stage
Radio City Music Hall.
I'm up there,
Can you see me?
I'm having a ball!

For a few precious moments
I escape
Into my perfect world.

I'm dancing
In a red dress,
A smile is on my face,
Just because I can,
I'm dancing in the rain.
I'm out there,
Can you see me?
I'm where I want to be.

For a few precious moments
We have escaped
Into our perfect world.

We're standing
Holding hands
In a field of perfect green.
We laugh,
Just because he can,
He gently kisses my cheek.
Can you see us?
We're still in there,
This is no daydream. 

It's necessary for writers' to have a strong imagination. I couldn't do what I do without it. In fact, I couldn't DO without it!

When I was in hospital for all that time, a large part of it was spent flat on my back counting the squares on the ceiling. I was unable to move, and especially during the heat of that summer, time dragged! I created a little world for myself where I could do all the things I can't in reality.

Sometimes, as the poem tells you, I was a figure skater, others I was a dancer, and sometimes I was simply a mum at home with her children. 

That isn't meant to make feel sorry for me, because actually being able to escape like that (usually with music playing through headphones) has given me so much joy and peace when I have needed it most. I suppose it is almost like meditation in a way, and I treasure it.

As my rehab progressed, we were required to spend an hour each day (usually between lunch and more physio), lying on our stomachs with our feet dangling over the end of our beds. They called it lying 'prone' and it was done in order to stretch muscles after surgery.

I still do it most days now when my muscles are cramping and tight, but back then, doing it day after day was painful, not to mention boring!  After a while, I was able to drift into my imagination and with my headphones on and my eyes closed - those hours flew by!

I did it again much later before my GCSE and A level exams.  I would just try and relax. Although, especially when it came to my A level's,  I still went to pot! 

It didn't matter how much I revised, I was panic stricken as soon as I entered the hall. My heart pounded, my hips cramped badly each time, and my hands shook. The writing on the papers swam in front of my eyes, and even though I tried so hard to get a grip, the panic was relentless.

Needless to say, when it came to my A level results, they weren't what I wanted. I managed to completely fail two of them and the third (English Lit) was not the grade it should have been.

Fat lot of use my 'meditation technique' was to me then!

Anyway, later in life it is still useful - especially when I feel down or the pain is particularly bad, I'll either let my mind take me somewhere else or I'll do some singing. I love singing as much as I love writing, and both give me great stress relief. 

The last stanza of the poem is probably the most important to me, because it tells you what happened later, and how reality can be even more special than the dreams ever are.

Yes, I get depressed sometimes (as no doubt you will find out) and yes, I do still need to 'escape', but not so much in the last ten years. 

I'm stronger now, and I know I have my husband's love - exactly as I am. I don't need to be anyone one else. I can be me - and that makes me so lucky.

H xx    


Sunday, 26 August 2012

Depression - A shared 'Status Update'

It's been a rough few weeks for me. Well, it's been a rough year for all disabled and ill benefit claimants, as we continue to fight this government.

I suppose, given my (almost) lifelong battle with depression, the fight and constant worry, coupled with lack of sleep and pain too, I was always going to have another bout eventually. Thankfully it's been a short one, and I am beginning to feel much better.

The constant lies and 'scrounger rhetoric' hurts every single one of us. It is not like we choose our disabilities, illnesses and limitations!

I'd love to live a 'normal' life more than anything else in the world.

As I've said before, it breaks my heart sometimes, knowing that I can never have children and watch them grow, knowing I can't stand long enough without pain to cook a meal for my husband. I can barely stand long enough to make a cup of tea without pain ripping through the lower half of my body.

It's not just the Cerebral Palsy, it's the Endometriosis too. If you add to that the Polycystic Ovary Syndrome, and the exhaustion that pain brings. You might understand why I get depressed sometimes!

It's just so hard to know you face the same struggles for the rest of your life. I will never be 'free' to do the things others do.

None of us want this for ourselves. Now we have to cope with the extra stress of what this government is doing to our lives.

I for one, have felt so hopeless and helpless - so beaten down by it all. I feel it often but I manage to fight it off usually, by throwing myself into the campaign and reminding myself that I am not alone.

In the last few weeks though, something gave in me. I wasn't suicidal by any means, but I just felt so tired. I wish they knew what damage they are doing to us - how much it hurts to be made to feel like you are 'persona non grata' in society.

I wish they cared.

It's all bonuses for rich people, and big business. I can't help but feel that if they claimed back the tax they are owed, and closed certain loopholes, then the poor and vulnerable wouldn't have to pay the price like we are now.

We don't ask for much.

Anyway, I just thought I would share yesterday's Facebook status with you, to remind people that they aren't alone. We all want to give up sometimes...but I won't. Not while there are people out there facing such uncertain futures, who cannot speak for themselves.

Here it is:

'Now that (I think) I'm coming to the end of a mini bout of depression, I can admit it to you. If you know me well, you'll know that I've suffered with it on and off since I was 14 - with the worst bouts being in my teens.

You will also know that I've taken antidepressants since then. The depression is 'clinical' and made worse by permanent damage to my body's ability to produce serotonin, due to so much anaesthetic over a short period of time when I had my surgery.

The last few weeks especially, I've been weepy and tired. I'm always tired, but I've felt like every piece of energy has been zapped out of me. If I'm honest, campaigning has been so hard - and I have felt like chucking it in and walking away. Just letting what happens, happen! I KNOW that isn't me!

When I don't want to sing - or rather when singing doesn't make me feel better, there's a problem. When I don't even want try and beat my writers' block - that's a really bad sign!

I've just felt completely worthless and useless and like I just can't be bothered, even to do the things I love.

Hubby said he's noticed a few times, but I've hidden it well. That's the thing with depression, sometimes you feel like you have to hide it, because no one wants to know someone who is feeling awful about themselves, and about life in general.

'I wish you'd talk to me' comes out of people's mouths so easily, but it's very difficult to know where to start, or put into words something that you really don't understand yourself - and 'I wish you'd talk to me' is easy to say, but it is harder to listen sometimes.

Anyway, what I really wanted to say, was that I'm sorry if I haven't been myself lately, or I haven't done or said what you needed me to. However, (hopefully) I'm on the right track again now.

The fight back will continue! :-)

Love, H xx'

Monday, 13 August 2012

Somerset Guardian Gives Me Space to Tell the Truth.

I was nervous when I sent the email. It's one thing campaigning on a national level, but 'bringing it into my yard' so to speak, is harder.

When I sent the version of my 'Wake Up' article to the Guardian and the Observer letters pages, I didn't hear anything back. I was disappointed, but it wasn't unexpected.

I've been busy with 'The Spartacus Campaign' since it started. I've lobbied MP's, Lords, and I've taken part in various consultations, as well as sending this article to national newspapers.

I told myself that was the reason for not contacting the local press until now, but in actual fact, there are many different reasons why I chose to bide my time.

Firstly, I am all too aware of the 20% rise nationally in hate crime against disabled people. I campaign with many people who have been victims of it. All sorts of things, from verbal and physical abuse to having their properties or cars damaged.

I did not (and do not) want that to happen to me. I like to think it would never happen but I know that's what they thought too, and I just didn't feel I could take that risk.  Not only that, but I didn't want people to think that I was putting myself forward through any sense of ego.Yes, I'd love my writing and poetry read at some point, but I would never use a campaign like this as a means to an end. The campaign is too important, and it is not about just me.

I have put my 'creative writing' on hold really since 'Spartacus' began, because that can wait.

People's lives can't.

Anyway, finally I decided to just DO IT! I sent the full article, and fired off a covering email to the editor of 'The Somerset Guardian' before I let myself think about it for too much longer. It was the following Monday when they sent the photographer. I am never keen on having my photo taken, but I told myself that 'this is for the cause'.

When it came out, I was pleased with how much of my original piece they had used, without changing a word. Obviously it isn't the whole thing, but I never expected it to be.

I hope that the readers realise that 'Diving Allowance' is an error. After all, even if I could dive I wouldn't. I have a very bad fish phobia! Yes a fish phobia -strange but true! Maybe one of these days, I'll tell you how it came about - or at least, how I think it came about!

Now, all I can hope is that my article (even the shortened version) has made people think a bit and question what they are being told.

NOTE: The full version of the article is on this blog, but this being the latest entry you will not link directly to it. Please don't give up though - just scroll down the sidebar of the blog.

It is important that the truth is told.

Lots of love,
Helen xx

My 'Wake Up' Article (Somerset Guardian Short Version) + Full Version Below

The Somerset Guardian (shortened version) of my 'Wake Up' article - with the FULL version underneath. (Via Black Triangle Campaign)