Saturday, 20 February 2016

A Letter to My Younger Self

Dear Helen,

In 2006, you got married.

All those times you' spend sitting in your room worrying about your future - worrying especially that no one would see past your Cerebral Palsy... well, they did.They do. Although granted, you'll have to wait a while,-  and in the meantime you'll fall in love (or what you thought was love), with the wrong person - at least twice!
Take my advice and don't break your heart over HIM, because he wasn't worth it. 

You'll see him years later (briefly), but you'll see him for exactly what he is -and you'll think, 'yeah, whatever' -even if you do have a momentary...moment!

After surgery you'll struggle, and you'll think (on more than one occasion) about ending your life. There will be no energy whatsoever, and you'll lose pieces of yourself, until you feel like nothing more than a shell. 

You will eat and purposely make yourself sick because you'll feel so tired, empty and scared. It'll feel like you have no control of anything. It will happen again (for brief periods) during your A levels, and after you finish work, - but you will be OK.

In time it  becomes clear that the only person you're hurting is yourself. It isn't the answer, and if you want to feel better you have to take 'one day at a time'. You will get YOURSELF well, and later will consider yourself lucky that you didn't get in any deeper.
As for depression, I'm afraid you are stuck with that. 

Some days will be so dark and lonely, - (that won't change).You'll feel disconnected from the world, but it does get better. You know that now. There will be ways through because there always is. Just hang on!

Be grateful for the people you have around you. Even though it seems like they are a lot of the problem, you will come to realise that they want what's best for you -(even if they go the wrong way about it) and make you feel worse! 

Later, it won't matter so much, -  although there will always be a feeling that you aren't good enough.It isn't something you will just get over. You are still working on that, even now!

The way through is to accept that your life isn't going to be the same as other people's, so it is pointless making comparisons -even though you haven't meant to.

The decision you made (when you were eight) to try and help people understand what disability is like, and to fight for for equality, will become an even bigger part of your life -and you'll come to the conclusion that THAT is your purpose, so please ignore all the times when you feel you don't have one! You do -and you always will.

There will be people coming to you with problems -big ones and small ones.which  you can do your best to help with, but sometimes you'll fail. At least you tried! Having said that, there will be times when you've save people's lives -(even though that is a private thing which won't be talked about). 

Try to feel proud that people come to you for help or understanding, when they are at their worst. That is what you DO!  Not being able to have children of your own will break your heart, and I can't promise that that will ever go away -it hasn't yet! If you did have children you couldn't do what you're doing now, because every small piece of energy you have would be devoted to them. 

Your way through it, (so far anyway), is to keep reminding yourself that raising awareness of disability and fighting for your beloved cause is so much more important. You can use what you CAN do to make up for all the things that you can't. Turn all the negative into positive. Make something good out of all the bad. It helps others -and never lose the belief that you can make a difference, even if it is only a small one. The world can be made better, and you have to help do it.

 Don't underestimate yourself because that's where you make a mistake. Don't let other people define you! Be who you want to be. Following your own path is what you have always done. Know that only you can do it. 

There will be times when you want to give up, and many days when you'll put on a positively Oscar winning performance of being fine, when you're dying inside - but that's what life is, - and you are in control of yours.

Image: Google.


Sunday, 14 February 2016

'Always Remember People Love You' - 'The Road To Nowhere' (1996)

The Road To Nowhere

I've been walking a long time, 
Thinking of you,
There is only one thing I want you to do,
Just look at the stars,
Remember I care,
It's hard out here on the road to nowhere.

If I could be there,
Believe me,
I would,
I'd be right back with you,
As fast as I could,
You've got to keep smiling,
And remember I care,
It's hell out here on the Road to nowhere.

Keep your head up to the heavens above,
Always remember there's a world full of love,
Forget about me,
If you dare,
It's Hell out here on the road to nowhere.

Now I'm with you,
Home at last,
Forget the lonely days,
They're in the past,
Just look at the sky,
And remember I care,
We'll stand together ,
On the road to nowhere.

This one was written on 14th January 1996. I was 15 and if you've read some more of my blog you'll know that I had only been out of hospital (after a nearly four month stay), for a couple of months.

I wanted to give most of the poems I wrote during this time a positive ending, because I was so depressed.
I felt so awful inside. I was still in the process of learning to walk from scratch. There was physio, school, homework, pain and more pain!

It isn't easy being a teenager anyway, is it? All that angst and crazy hormones! I had to deal with so much, including coming to terms with my Cerebral Palsy, and I just couldn't think straight. I was tired, in so much pain, and so angry about the life I couldn't have.

I'll write about this period in more detail at a later date, but I felt that life and the lives of my friends, was slipping away, and I was stuck - on 'The Road to Nowhere'.

Once again I sought refuge in writing, and I worked hard to make this poem as positive as it is.

I used the word 'heavens', (even though I'm an atheist), for the simple reason, that it worked. It still works, so I have left it, as it was written. 

Maybe I knew that one day I would look back at it, and feel proud because even at my lowest ebb, I could still find some little spark of hope in me - something which said, 'Just hang on...'

I won't pretend the hope was there every day. Often the pain was bad and I was exhausted, frustrated and angry. I was a bitch to live with for years afterwards to be honest. I just couldn't come to terms with it all. In reality, some days I still can't, but it's easier now. I have a strong marriage to a wonderful, kind, sensitive man, who accepts me just as I am. When I wrote this, I didn't think I would ever have that. I didn't think anyone would want me - ever.

A while ago, I found the original drafts of this poem in an old black and red notebook. The blue ink is slightly faded, and smudged in places where my tears had fallen. I remember clearly a positive thought that kept me going and enabled me to write such a positive piece, and that thought was 

'Remember People Love You'  

I didn't feel I deserved it at that point. I was such a cow to my family, but they say you always lash out at the people you love the most - and I did. I just felt so awful, and that everything was so pointless, and so many people seemed to expect more of me than I was capable of giving. That made me even even angrier!

Anyway 'Remember People Love You' became the 'Remember I Care' refrain, and so, that thought comes comes back whenever I read it.

Always remember people love you.    

Monday, 8 February 2016

A 'Mudlark' at Heart!'

Last night, I watched a programme called 'Treasures of the Thames'. It was about people who search the bank (foreshore) of the river Thames, (in this case) for historical artefacts, like coins, jewellery, pots, or anything that might be important.

They purchase a licence to search and then go along with metal detectors or trowels to see what they can find. Obviously it can be dangerous because of the tides, and potential for catching illnesses like Wiles disease. I was totally fascinated!

It fits with my love of history and of all things abandoned. I rang a friend of mine, Mike, who has been metal detecting for years. everywhere from beaches to Roman villas, and civil war battle fields.

We had a really long chat about all the things he'd found - and I got butterflies in my stomach. He reminded me that there are the remains of a Roman villa fairly near to us, where they have done regular digs, and you can still see some of the colour on the mosaic tiles!

Unfortunately, it's only open to the public at certain times but I told hubby I was determined to go again. I went once when I was very young so I've only got vague memories of some very long grass and a birds nest.
Anyway, back to the programme. These treasure hunters are known as 'mudlarks' - (it sounds like they should be some sort of bird, doesn't it)?

Anything they find that they think might be over three hundred years old, they have to take to the Museum of London to register it, and have it valued. If the museum thinks it is 'special' enough or something they don't already have, they will buy it from the Mudlark or hope that they donate it.
There are drawers and drawers of things that have been found - from rings to pieces of clay tobacco pipe. One of the most common finds are dress pins from the eighteenth century. Apparently the people of Britain used millions of them, - as hair pins, dress pins, or general fastenings - before the days of buttons, zips and safety pins.

One of the most amazing things that was found during the filming of this programme though, was a medieval cannon ball. I think was found on the foreshore area just in front of the Tower of London. People aren't allowed to search there often and definitely not allowed to use trowels,spades or metal detectors because the erosion of the bank in that area is already particularly bad so they don't want to chance making it worse with modern tools. You have to search with 'eyes only'.

Ooh, I was so excitable! I watched it totally transfixed, willing them to find something new and important.

They were ecstatic over the cannonball and dated it as medieval. It's amazing what you can find washed in on the tide! Tiny, fragile things that you'd think would be easily broken up and long gone into the mists of time. still there - and often still in one piece!

The Mudlark's say it's not about the money, -it's about the chase. They say that so much is down to being in the right place at the right time. Due to the movements of the relentless tide, you could miss something by seconds. I think it's all about luck It's luck, with a few educated guesses thrown in - a bit like life is sometimes.

I can see how that might become addictive. Similar to how I used to feel in old record shops, car boot sales and second hand book stores. The feeling that something might be there just waiting for me to find it.

I ended up thinking I'd LOVE to do it - but I'm glad, (due to my Cerebral Palsy and being unable to walk or stand unaided) that I can't.

I dread to think what I'd bring home - and according to hubby I already own enough 'clutter'!  'Oi!'...I replied, 'What you call 'clutter', I call CD's, books, and gorgeous, pristine, beautiful notebooks! They are like treasure to me, but 
I've decided that I'm a 'Mudlark' at heart...!

Mudlark -Wikipedia Page:

Image: Lino print - Globe, Tate Modern, mudlarking -via 'Pinterest'


Tuesday, 2 February 2016

Childlessness and the Social Network

I wish social networks would spare me the impending motherhood,and 'Pampers' advertisements, plus all the baby and motherhood related apps springing up left,right and centre! 

I'm well aware of my age, gender, and that I 'should' be having a baby or 'should' be a Mum by now, but I can't ever be.  

Today alone, on a social network I've seen adverts for 'Momjunction', 'Mumsnet', 'Pampers', a brand of follow on milk, a week by week pregnancy tracker and 'Cow and Gate' baby food. It's so hard and frequently leaves me on the verge of tears.

I never once hit any ads that might make you think I would be interested in such things, so it is based purely on my age and gender.

I didn't choose not to be able to have children. I won't go into the whys and wherefores, but I'm surrounded by people who have done it, will do it, are doing it, with the greatest of ease. I do not need to be targeted by advertisers, as well.

I can't tell you how painful it is.

I have tried every single 'remove ads' app that you don't have to pay for, and guess what? They don't work for more than a week.

At this point I am seriously considering leaving social networks, because it's hard enough living in the real world, seeing pregnant women, babies, adverts about babies...and more babies. I don't need to be reminded of my failings any more than I already am, just because they want my money!

Unless this is happening to you, you have no idea what this feels like. It's like the whole world is privy to a secret that they won't let you in on - and no matter how hard I try to accept it, (and some days I even think I have), it doesn't take much to send me hurtling back to having a knot in my stomach or lumps in my throat, as I come face to computer screen with another image.

My situation has already put strain on my friendships, and in some cases I've lost them entirely, because when friends get pregnant - become parents, it hurts me so much, It's difficult on both sides, because quite rightly the life of the new parent is different. The pregnancy, baby, child becomes the centre of the world, and I'm the friend who can't identify with that.

I do all the right things. I stay off social networks on days when I don't think I'm going to be able to handle all these types of issues, - seeing a newly pregnant friends baby scan, the bump, to pictures of newborns and toddlers. It all hurts.  I keep my pain private and try with every fibre of my being not to resent people that have been luckier than I have, After all, it's not their fault that I can't ever be a Mum.

It's made worse by the fact that childlessness is such a taboo issue. It can feel so lonely, I've joined support groups of course, but I found that actually made things harder for me sometimes so I left them, - having decided that I needed to focus on what I could do. I want to make the best of my life, despite a lifelong disability to cope with as well. 

Not that talking about such a painful issue (with people who understand) doesn't help, it does -and we should absolutely be doing more to raise awareness so that people can be honest, (and they can feel a bit less like a misfit), but sometimes (for me anyway) it's all a bit overwhelming!

What I don't need, are any more reminders than I am already subjected to on a daily basis!Just because I am a thirty four year old female, advertisers target me and thus, rub salt in my wounds!

I want to remind people that there is more to life than having children - and the assumption that everybody can, wants to or has fulfilled their reproductive obligation, is incorrect, hurtful, - not to mention tedious!

It makes my battle to accept my situation a million times harder than it is already.


(Image: Pinterest)

Monday, 1 February 2016

Words Can Hurt

Before you make assumptions,
Think about how it feels,
Before you make assumptions,
Ask me what's real.

Before you accuse me,
Learn about the facts,
Before you accuse me,
Ask if you'd do that?

Before you judge me,
Put yourself in my place,
Before you judge me,
Say it to my face!

Before you slander me,
Open your mind and be alert,
Before you slander me,
Remember words can hurt.


(Image: 'Pinterest')