Tuesday, 29 May 2012

The Rose (Poem - September 2001)

If you can
Could you take away my thorns?
They aren't nice
And I don't want them

As for my petals
You can notice those,
They're the pretty part
When you pick me up,
Be careful not to scratch yourself.
What's above
Isn't always what's beneath..

When I wilt,
Keep my petals in a box,
They will remind you of me

The Keys - How I stay strong, keep perspective, and deal with anxiety

I went to the doctors today. On hearing my name called, and my G.P’s smiling face peering round the heavy fire door, I did exactly the same as I’ve always done. With my crutches in one hand, I stand and bend to pick my handbag up off the floor. Still one-handed, I put my bag over my head and slide it on to my shoulder. Then I ‘unpick’ my crutches and slip my arms. Absent mindedly, I wait for the ‘snick’ to tell me that my knee is in the right place, and I begin to walk.  It is all second nature now and happens so quickly that I don’t even register doing it.
Once in the consulting room, I repeat the process in reverse and sit down. Dr Atherton sits in silence for a second or so, and then says hesitantly “I don’t want this to sound patronising…but I don’t know how you do it!” I smile at her, “Do what?” I reply lightly. She grins, “Everything! I’d love to know how you do it all. When you come in here, you manage to smile at me and make me laugh even though I KNOW you’re feeling rough!”
I feel a jolt inside me, a sudden realisation that I’ve never really thought about it, not in any great detail anyway.  “Oh, I don’t know, I’ve never really given it much thought…” She smiles, and we talk about what I came for.
At home, a little under an hour later, I find I’m still thinking about her words. This calls for a pen and paper!  Unable to find my beloved diary, I reach for my draft book, and sit staring into space. I’m wondering where to start.
Colin looks up from his book, “Are you alright?”He asks softly, “You look puzzled!” “I am a bit. Dr Atherton asked me how I do it.” “I wonder that sometimes too. Maybe you should think about it…properly.”
So thinking I am!
It is pointless looking for one key to coping, I realise that pretty soon. One thing that has changed in the last few years is that I was diagnosed with ‘General Anxiety Disorder’ in the months before my parents moved abroad. I began experiencing heart palpitations, cold sweats and rushing thoughts. I couldn’t concentrate and I definitely struggled to write. Colin noticed the change in me and insisted that I see a doctor.
The following day, I was mid panic when I got to Dr Atherton’s room.  There was a feeling, like a burning hot poker was being dragged down the back of my neck and on into the spine. My mouth was dry, and over the previous days, my lips had become dry and flaky. It was the one time Dr Atherton had seen me cry, as I feared I was going mad.
She told me that I wasn’t going mad at all. If I was, I would be unlikely to realise it. She prescribed a mild anxiety tablet, and assured me it was OK to take with my antidepressant’s.  C.B.T. or Cognitive Behavioural Therapy was recommended. I could even do it online. It helps you understand why you feel what you feel and helps you gain perspective.
After the third part of the programme, I suddenly realised I could handle this myself, and hey, even if I was wrong, then the programme was there. When the anxiety and negativity was at its worst, I trained myself to block out everything around me, and concentrate solely on what I was doing. NOTHING ELSE EXISTED. I would focus on my footsteps if I was walking, closing a door if I was closing a door even. For a while, I became that blinkered. I was still able to live normally, have a conversation, and go to writers’ circle, so that nobody other than Colin and my family knew there was a problem. My mantra became “I AM IN CONTROL” I said it out loud if I needed to, and it works.
Two years later, I am off the tablets. I have been for nearly six months now. So one key to how I manage is that I live in the moment. If I feel depressed, anxious, or I am in pain, out comes the mantra…and tomorrow ceases to exist, as does five minutes ago!   It has enabled me to enjoy the good, and the now. I AM able to plan things again, unlike before, but I NEVER go too far ahead. The future will take care of itself. Try it, it works!
Another key is my writing. It is a constant. My love of words, pen and paper has been with me for as long as I can remember. It has given me an ability that I can focus on. It gives me goals – publishing my poetry books, and eventually when I feel ready, maybe my diaries too.
It provides me with structure and, when I need it, writing is great therapy. It clears the mind. I AM able to do this. I can create something from seemingly nothing. I have chosen to make the most of it, even if sometimes people think I’m obsessed. I’m okay with that. It means maybe people will judge me on my abilities rather than my disability. On a side note I wish people could see what I CAN do when they first meet me. I wish they could really know me before they make snap judgements, but too often society doesn’t work that way.
One last key before I go, is that I’ve always tried to see the bigger picture. The world is about more than just me- what I want and need. Other people suffer too and there are people a lot worse off than myself. Sometimes I curse my strong sense of empathy and my desire to make things better because I have been known to neglect my own needs. Nine times out of ten though, I treasure that ability.
It enables me not to think about myself, the things I’ll never have and never do. Obviously, there are days when I feel angry, sad and I want to scream so loudly about the unfairness of it all. I allow myself that now because I understand that those feelings are only natural for someone in my situation.
The Cerebral Palsy, the lack of a job, my constant pain and tiredness, and the fact that I can’t have children would be enough to pull anyone down. I have learned that things can and WILL be better though if I always TRY and look for every little good thing I have. I am in control of my own life. It is up to me to be the best person and live the best life that I possibly can…and I will.

Sunday, 20 May 2012

I Am Freedom - Poem (2005)

I am freedom,
Your blissful release,
And discover,
The perfect peace.

I can't tell you,
How it feels to be free,
And live for me.

I know the struggle
You have to face,
A reprieve,
To find your space.

I am freedom,
Your distant dream,
With the sun,
In fields of green.

I know the battle,
You have to win,
The chance,
You will find within.

I am a lover,
A gentle kiss,
A look,
All it took,
And you might have missed.

I can't tell you,
How it feels to be free,
Aim high,
And discover me.

(Image: Google)

I Am Freedom was written in 2005.

It is a favourite on my poetry website, so I thought I'd share it here too.

The copyright remains with me as the author


Saturday, 19 May 2012


Forward from my (as yet unpublished) poetry anthology - Serves as an introduction to me and my poems also.

From the start, things were stacked against me. I was a premature baby, born at seven months. That alone meant my chances weren't good. I was tiny, weighing three and a half pounds I fit easily in my parents' hands, but, thanks to a series of 'unfortunate events', it would be a long time before either would hold their baby daughter.

Soon after my somewhat eager entrance to the world, I was taken, as 'prem' babies are, to the Intensive Care Unit, and placed in an incubator. I will tell you, to the best of my knowledge (through what Mum has told me) and ability, about the events that happened next, and how they would change my life...forever.

My first few days were anxious. My tiny body struggled to hold onto life and my parents could do nothing but watch.

I was looked after by a wonderful team of doctors and nurses who did everything they could for me.  I then developed Jaundice and I needed a blood transfusion.
My parents waited.

I came through it.

Over the next few days, I was returned to my incubator wrapped in bubble wrap, (very fetching!) and attached to a heart monitor. Mum was relieved. "She's come through this; surely, nothing else can go wrong, can it?"

But it did. Days later, I caught an infection, and while the heart monitor I had been linked to showed no problems, continuing to beep reassuringly ... I wasn't breathing! If it hadn't been for a nurse passing by and noticing my white lifeless body, I'd be dead.
I am sure that if the staff hadn't been busy dealing with the death of another tiny baby in the next incubator to mine, they would have noticed me sooner, and been aware of the faulty heart monitor.

The doctors battled to save me, and finally those efforts paid off as I began to breathe again. My mum cried. I was alive! But I had already paid the price, and my life had been changed forever.

In those minutes when I was 'dead', no oxygen was reaching to my brain, and the parts that control my mobility were damaged. I was nine days old.

Cerebral Palsy affects its sufferers in different ways. Some can't talk or walk, some have learning difficulties. I know I got off lightly. But it's been a long, hard road, getting to where I am now.

Until I was eight, I attended a 'special school', attached to the hospital where I was born. It was a cosy, happy, safe place. I had a lot of my friends and many of the teachers there called me "Miss Sunshine".

It became obvious to my parents that I needed more. I could do more.
All I knew was that there were days when I would finish the work early, and I was able to sit at my desk and write stories. I loved that, but what I loved more was helping the other children. They were my friends and there we were all in the same boat. I was not different.

I had many friends who were much worse off than I was. My best friend, Eleanor, was a lovely little blonde girl, with the most beautiful blue eyes I have ever seen in my life. 'Ellie' couldn't walk or talk. She talked to me though. We developed a code. She used her hands, eyes, and facial movements to tell me things. I'd ask her a question and she would indicate yes or no with her left and right hands.
Most importantly to me though, she was Ellie. She would laugh with me ... although sometimes, I knew she laughed at me!  I would spend playtimes, despite my difficulties walking, pushing her around in her chair. I was nothing special, I just loved being with my friends.

The day I left to go to my local 'mainstream' primary school broke my heart. Saying "goodbye" to Ellie was hard, because she couldn't tell me she understood, although her eyes said she did. I never saw Ellie again.

I started my new school a week or so before my parents' separation.
I was the only person there with a disability, and for a long time children stared at me. I was different. One of the things I hated most was assembly. While the other children sat cross legged on the floor, I had to sit, to the side, on a chair. Crossing my legs caused me pain. It still does.

Eventually though, things settled down a bit and I found my niche. I was 'skipping rope holder' at play time. Part of me felt wonderful, so pleased and relieved that they wanted me to play with them, but it hurt too. I wanted to be the one skipping or playing hopscotch, and I hated being left out of 'kiss chase' but I understood that it was just the way things had to be. There was, there is, no choice.

At age eleven I moved over the road to the local secondary school. Again, I was the only one with a disability. I was a different 'fish,' and this time, in an even larger pond. This time though, I didn't feel so alone, because a lot of my friends came with me.

P.E. lessons were always the worst. I was time keeper, or whistle blower."Count the cricket bats as you hand them out, Helen." It was all the teachers could do. It wasn't their fault. I had to be included.

It wasn't their fault either that I would frequently go to the 'girls toilets,' lock the door, and sob my heart out.

In time I discovered that there were things I was good at, things I could really do.
You know I had always loved writing stories, but it was around this time that Mrs Rogers, my wonderful English teacher, suggested I write a poem. I rolled my eyes, smiled, and said, "Yeah. It'll never work!" She just smiled back at me, "We'll see..." she replied.

Apart from writing, my participation in P.E lessons had taken a new, more exciting twist, (no, it wasn't a tall, dark and handsome teacher in shorts), but dance lessons!
I hear you say, "Well, that should be her idea of hell, shouldn't it?" But, it wasn't! I became a choreographer. I would devise the dance moves and routines for my group. "Can you just move your leg up a little higher? Hold tighter! "Ok, start again!" I loved it! Teachers would come and watch and people actually wanted ME to become part of their group!

Just when things were starting to get better, my condition, as the doctors had said it would, began to get worse. I had been in a wheelchair for some of the time for many years, but now it became a virtually permanent thing. I knew it would happen. Puberty had made my body heavier and so the strain on my already painful hips and knees became worse, and the increased pain, unbearable.

It was time for 'The Surgery'.

I can't even begin to tell you how terrified I was. The hospital was 400 miles away from my home in Somerset. It was 'the best' place for me to be. I knew it would involve at least three operations and I knew I would be away for at least three months.

My first of this set of operations took place on July 4th of 1995. A family friend called it 'Helen's Independence Day.' I wanted to crawl under a stone, and die. "Just think of how wonderful it will be when it's all over" Mum said. I smiled and said, "Oh, okay."

During the first operation, the doctors had to break and reset my left hip so that it was in the 'right' position. They put a big plate in my hip to help the bones heal. The plate had to stay there. Also during that same operation, they put a screw in my left ankle, to help it take weight. The screw has to stay there too.

I don't remember much about after the operation, just snippets, and pain.
But the pain and the events following the second operation, I will never forget.

It took place two weeks after the first, and it involved...cutting muscles.

The doctors had to cut the muscles on and behind my knees in both legs, and also cut the muscles just above my hips. Again, it was both legs.
I woke up after the operation, and immediately, to put it bluntly, wished that I'd died on the table. All I could see was a red haze, and the pain was...well, it wasn't pain, it was agony. I can't describe it to you so I hope you don't mind if I don't even try! I just know that I'll never forget it.

Mum says I opened my eyes, looked at her, squeezed her hand and passed out again. The next few weeks are what I call my 'lost period.'
I was attached to a morphine drip, still in pain and in and out of consciousness.

One day though, I had the strangest experience. I woke up, and I was above my body, staring down at myself. I could see my Mum and step dad on either side of my bed and me, lying there, pale.
I remember clearly being able to see Alfie, a boy in the next bay that I had made friends with. He was talking to the nurses. The next thing I knew I was back inside my body, and holding my step dad's hand.

Soon, my rehabilitation began. I had to learn to walk from scratch, the 'right' way.

It was hard, so hard. There was day after day of physiotherapy, exercise classes, hydrotherapy, pain, and more pain. I didn't even get a break when I was asleep. I had to wear these long blue splints that went from top of my hips, right down to my ankles, and I had to sleep on my tummy. If I tried to change position, a nurse would come and flip me back again. They really must have had eyes in the back of their heads!

Eventually, it was time for the dreaded 'bars'. They ran parallel to each other, and I had to walk down the middle and get to the chair at the other end. Every step was long, slow, painful, and so very frustrating. "Come on Helen, you can do it! Just one more!" I wanted to break down and cry. Frequently, I did.

It was around this time that I started to lose pieces of myself. My hair had gone grey and I had already lost weight, but then things got very bad.

I was only seeing my family at weekends. Life had to go on for them and they had jobs to do, so they had to go home during the week. When they arrived on Saturday mornings, I was awful to them. I resented them for leaving me and going back to normal. After all, I couldn't. I was stuck. I resented them when they came, but I resented them more when they would kiss me goodbye and leave on a Sunday night.

I was a shell of the person I used to be. I hated myself. I hated the situation. I felt hopeless and pathetic. I didn't eat very much, and when I did, there were times when I would make myself sick. I can't explain it, but it went on for a while.

One day, Sister Judith took me into her office. "Helen, you can't keep doing this. If you do...you'll die. I know this is hard, but you need your strength. I don't want to have to put you on a drip, love."

I was still reeling. I didn't want to die. No, I didn't want to die, there.
Somehow, I managed to get it together, for the last 'push' as Judith called it. I just wanted to go home. I wanted to see my friends, my dad, my cat and, scarily, I wanted to get back to school.

It was hard but when I left hospital a month later I was walking with a frame. The operations didn't turn out to be the 'miracle cure' my head and heart had hoped for but, I'm not in a wheelchair anymore! A few months later, after a lot more physiotherapy, I was able to ditch my frame with its go faster stripes, for crutches.

Life is tough, and I get frustrated. I get sad that I don't get a rest from it, and I've been stuck with it, through no fault of my own, and yeah, I get angry. There are days when I just crumple in my husband's arms and cry like a baby.

People often ask me, 'If you could wave a magic wand, would you change it?' On days when I'm depressed, or in pain, yes of course I would! I would give anything to be able to carry my dinner across the room, go for a long walk with my husband, or run up a flight of stairs, but more often than not, I know it helps to make me who I am.

Without the disability, these poems would not have been written. I would not have known the pure joy and sense of pride I felt when ‘Please' won a poetry competition. I would not have had to experience such unbelievable physical and emotional pain, that I now appreciate all the little things in life, and every moment of happiness I can get.

These poems are like the children I know I will never have. I am proud of each and every one of them.  I often worry about the way society perceives those that are different. I feel bad because I can't manage a job and I can't do the things others do, but I think that these poems prove that deep down we are all the same. We all think, feel and want similar things no matter who we are.
I have been so lucky. I have a wonderful (if somewhat wayward) family, good friends, and a loving, caring husband.
Despite the varying physical and emotional states I have been in when these poems were written, I have loved every single second of it, and I will go on writing.
Best wishes,


Welcome to my blog. Obviously this is my first post, so the first thing I'll do is put up a piece (the forward to my poetry anthology) which tells you about me, and then we'll get started properly. This blog will contain my writing and poetry as well as political bits and bobs. I'm a proud atheist, anti monarchy 'lefty' as well as an active member of the 'Spartacus' anti disability cuts campaign.

This blog has been a long time coming. For a while I felt that I didn't want to get involved with the whole 'disability blog' idea. There are so many of them already (not that that is a bad thing of course) but I already had   (and have) my poetry website for my writing. There will be frequent links to that here!

At the moment, a lot of my time is taken up with the 'Spartacus Campaign' which I am proud to have been part of since before it even began.

As a disabled person, I feel that since the UK's coalition government came to power in May 2010, they have launched an unceasing and unfair campaign of misinformation, lies and hurtful statements in an attempt to justify the harsh and callous cuts that are being inflicted on some of the most vulnerable, ill and disabled people of this country - myself being one of them.

We have experienced not only a rise in disability hate crime nationally, but a rise in our anxiety and stress levels as a result of what we are put through. Many of us, including myself are terrified of the assessment process which we know to be unfair and brutal. It has caused many ill and disabled people, some of which have lifelong and terminal conditions to be left without any source of income. In some cases those people have been left so desperate and isolated that they see no option but to end their own lives!

It is 2012. I once thought I lived in a caring, compassionate society, where disabled and ill people were wanted and looked after. Society is certainly not equal for us, but since this coalition came to power, our fight for equality and independence has been set back.

I  no longer feel wanted in this society. On an almost daily basis there is something published or said which promotes the idea that disabled and ill people (those that are unable to work) are 'Scroungers' and/or a drain  on society.

This has done a lot of damage to my self esteem, and the self esteem of others in my situation. I did not ask for my life to be dogged by permanent limitations, pain and lack of energy. The truth is that it's heartbreaking at times. I've spent years trying to come to terms with myself. It is hard knowing that you can't do so many things. I'd love a job, a baby, a normal life. Through no fault of my own those options have been taken away from me.

I thought I had really begun to accept things though, as much as anyone can. I have a wonderful marriage, amazing friends and my family. I also have my writing which I am completely passionate about. I actually felt comfortable in my own skin for the first time in my life - until this government came along and made me feel worthless, useless and unwanted.

I've campaigned for disability rights since the age of ten. It may seem young, but it's true. However, I never thought, twenty years later, that I would be fighting this hard, for this long and only for the very basics! It is sick, cold, callous and deeply, desperately wrong that so many of us have to fight with what energy and strength we have, for a quality of life that so many others take for granted.

This blog will be about poetry, music, writing and fun. More importantly than any of that though, it is about the TRUTH.