Clarity

What kind of man inspires me? Now that is a loaded question.

I could name all kinds of people. Freud, Ken Fletcher (Is he allowed to be up there with the big ones?) Friedrich Nietzsche. The latter being quoted for one of my favourite sayings. “He who writes in blood and aphorisms does not want to be read, he wants to be learned by heart.”

I may well surprise you. I’m a bit of a thinker. I say very little in conversation that could be perceived as ‘intelligent’. I would even say I struggle in conversing unless I’m relaxed and within company that I feel comfortable with. It’s who I am, and I don’t think that will ever change. I have no desire to be the one that everyone stares at at parties, or be a key speaker around the dinner table. I’m the quiet soul who likes to sit and listen, nod, and smile. I like to absorb the atmosphere in a relaxed manner, and watch while characters dance and weave wonderfully in front of me.

My perception of people I admire is possibly warped because of my goals in life and what I aspire to do. Let me explain: A recent treatment of a television series I penned at University, has been re-visited of late (funnily enough), and it’s changed radically due to the material learned on patriarchy, feminism (Gender politics), cosmological functions and national identity, and I have now noticed a huge swing in the way I plot the story lines.

On reflection, I now address the reasons of how material written changes as knowledge of ‘how to’, ‘what to’, and 'why', become more apparent as we grow in our own personal style. Jung often relates the human psyche to that of an iceberg – non-conscious - but it affects how we attack things. The hero’s journey is one I consistently choose for my protagonist and I now realize, I had very little idea of the subtext I was imparting. I’m also aware I have no desire to allow the subtext to drown out the story as David Pirie would advocate. Having grown in understanding, the aspects of feminism and that of gender politics and how its represented by the media (Maraya Mannes, But Will it Sell? 1964) my confidence as a writer, and the material I present, has grown - as has my awareness of a social responsibility.

So then, in naming people who inspire me. Where am I at? I would like to be able to advocate wonderful people, such as Jung, or television experts such as Caughie and Creeber, or Agricultural Journalists such as Fletcher (above), and Douglas MacSkimming, but in reality there is one person I admire that surprised even me. My ‘personal style’ is changing as I mature.

I had a list of people in front of me that I was slowly sifting through when I heard a familiar noise from the garden. I gazed through the window to see my regular gardener pottering about. He has a key to the padlocked gates at the rear of my home and quietly, without fuss, lets himself in, takes stock of what’s around him and what I’ve done, and proceeds to pick up exactly where I’ve left off. I watched him un-noticed for a while, weeding, moving overgrown trees that we’d discussed earlier that week and it slowly dawned on me.
The man I admire most in my life is the Likes of ‘Old John, the Gardener’. Hard working, head down, focused. He knows where he’s going. He knows what he’s doing, and he plods on with it. Steadfast, and with vision.

I strove to become educated to a higher level at the age of forty having let school at fifteen. All my life I felt I had missed out on something important only to find that I haven’t missed out at all. I’ve simply grown, and matured, and learned to appreciate what really matters.

Real people living real lives.

It was amazing!

I don’t cry anymore.

When I think of you now, I won’t let myself. It’s taken a while, but I don’t. I do think of you though. Regularly. How many months has it been? Maybe two?

The thing is, we connected on a level that was deep. Deep for me anyway. I told you some little things I’ve never told anyone else. Probably because I thought you would understand and wanted to know more about me. Probably because you shared your fears and deep seated angst at the same time and it felt natural to reciprocate. To share of ourselves. You told me once "I was amazing".

I’m here now. Lying in bed. Thinking of you again. Determined not to cry.

There’s no point.

I think back sometimes to things that made me laugh about you, having learned to think of the happier times. It’s easier than remembering the last weeks that hurt. The day I sprayed you with water ... you called me a name that was blue-er than blue. You laughed. Your laugh was magical. Made my heart flip in my chest. I remember that laugh, and your smile more than anything else about you.

How many minutes did we actually physically connect? Not many. How many times did we connect emotionally? For me it was constant. For you, I have no idea, but now it feels like it was non-existant. The first time, I sat in the tallest piece of machinery I’ve ever experienced. 'Diesel head Debbie' they call me. The thrill of that machine was incredible, and no doubt altered my perception of meeting you.

Here I am trying to justify ‘the moment’ with something else other than an emotional and physical response. I remember watching your lips ... wanting to kiss them as you talked. Instant attraction.

I remember you today with that same warmth and tenderness. I remember you with love and compassion, and I’ll remember you for the rest of my life.

For me, you will always be 'amazing'.

Right Girl, Wrong Time

I’m reading through ‘right girl wrong time’ stories and my heart is literally crying out with empathy. Yes, I’m a bit of a softy, but really these feelings only affect me because it ‘is’ about ‘me’. I want to reach a level of understanding where the hurt stops. Where his words slide over me, and no longer stick in my throat.

It’s about my moment of finding ‘the one’, where I connected on a level I’ve never experienced. It’s about the moment when you see someone walk towards you and your heart skips a beat. And believe me it happened. Everything repeatedly ran in slow motion and a rosy fog descended over my eyes. Everything he said was ‘just right’, no matter how wrong his words were.

I was there once. In that moment of hope. In the beginning of something that could have blossomed into a cherished future. I stood in the blissful moment when you start to fall. That time in your life is supposed to be sublime, but all I feel now is loss and upset.

I knew how his words were spoken and what was meant behind the lines. I knew of the fear, the confusion he was experiencing. I worried that people would call me ‘foolish’. Tell me to “get a grip!” I felt everything he did. Every sentence he spoke was like looking into a parallel life.

You see, it may well have been his wrong time, but it was also mine. I had so many issues. A young family to deal with. An ex to tell. A family to announce things to that would like as not be disgusted, or just plain old angry at my moving on.

I was there once when I knew I loved him, but the timing was wrong.

Some people state I’m naïve. Unwise to continue what friendship we have. ‘You’re hurting yourself” they said. “Setting yourself up for a fall.” But I know differently. I have warm fond memories of a moment in time that I’ll cherish for the rest of my life.

Things haven’t miraculously fixed themselves. My lost limb hasn’t suddenly re-appeared. Being in limbo is most definitely tragic. I feel the macabre reality and relive daily my untimely demise without this lost love coming to fruition. I’m waiting for what may never be the right time, when old love has moved on, or forward to pastures new, and the magic and possibilities of a bright future of meeting someone is so exciting it has to be sang from the rooftops. There is no other option. I was dying to sing but stilled by fear. I was scared of change. Confused by thought. I wanted him, and I knew how he felt for a brief moment.

The moment was wrong for both of us in some strange twist of fate. I knew without doubt that this had been, and is for now ‘right guy, wrong time’.

Creutzfeldt-Jakob Disease.

Gone.
I'm bloody Nuts!

I deleted you in a fit of madness. My computer address book is bare. Devoid of your name. My phone lies empty. I hate you. I hate your silence.

There will be no more contact. I scare you. I’m too open. Too intense. You have issues. We both do. Excuses.

I opened my mouth, when I should have kept it shut. I made you laugh. I made you frightened. I made you think. I wonder had I not pushed so hard… I wonder if I should have stepped back.

I look at my blackberry every day. I check my e-mails too much. Each time the phone rings, I wonder if it’s you. Each time it rings, my heart leaps for a split second. Each time it’s not you, I sink a little deeper.

I pass you sometimes on the road. My heart shudders to a halt. Did you see me? Was it easier to pretend to speak on your phone and laugh at a simulated conversation? Was she pretty like me? Did she smile the way I smiled? Is she made of plastic? Does she care?

Do you laugh when you talk of me? Am I the nutter? The mad cow? The crazy one? Do I sway from side to side?

To smile, or not to smile. I never know the answer. I smile. I never know what you think. Or why.

Sometimes, I have this urge to stick out my hand. Stop you. Roll down my window and say something. Anything. But I know I have to leave you. I know I have to wait and see. Are my thoughts projective? Do you think the same as me? Are you lost without me? Too vane?
My head hurts. Too many questions and not enough answers. I'm diseased.

Sometimes I don’t see you until you’re on top of me, and it’s almost as though I’m in a moment of our past. I turn to see your face bearing down. I play with my phone, like you do. Pretend I’m speaking, to someone. Anyone. Laughing. A flash of memory crashes as I see your face come towards me at a frightening speed, and my stomach drops. What do I do. Panic. I look at you for a split second as we pass. I love your eyes. I loved your kisses. Do I drool?

God, I feel sick.

Confusion hidden. The facade of order maintained. I love your smile. When you smile. If you smile. How it lit up your face.

Sometimes, I’m smiling at a passenger’s conversation, and those days I am thankful. You see me happy. Although you pretend I’m not there. You see me smile the way you do. At someone else, or something else as long as it’s not me. But we have to look happy. We carry on as if the moment never existed. We never existed.

So then...if we ever meet. I turn around, and there you are beside me. Will we smile? Pass the time of day? Say "How are you?" "Yes, I'm great." Will we be honest and open? Say, "Let's have dinner?". "Let's go for it, and fuck all the issues."
Will we pretend I'm sane? Will you feed me your lies and pretend to care?

I have to remember you smiling. I have to. Don't you know that hope springs eternal? Don't you know there's such a thing as mad cows disease? You fed me everything that made me love you.

You spongyfied my brain.

The God in Blue.

I only whispered ‘fuck!’ twice on the operating table. I used to pride myself in staying silent. Proud. Wouldn’t let myself down in front of others.

‘The doctor likes to hear if he’s hurting you, it helps him know he’s got the right place.”
Fucking masochist!
My face is wet. Very wet. I think back to the other room. Thirty minutes earlier.

He presses the points that are most painful. Not a thought about what pain it causes. But I know he’s watching. Judging. Assessing.

I’m aware my reactions make all the difference, but at the same time I have no desire to pretend and make a noise when it doesn’t hurt. I want him to know the truth. Sometimes when he touches my back he misses the spot. He’s not perfect. I’m also aware if he misses the spot that hurts then he decides not to inject. Catch twenty-two. I can’t stand the idea of it being missed.

No verbal affirmations of agony = no relief.

Decision made. I look at him while he’s rattling through the ‘usual stuff’.
‘Same person same stuff ‘ he says. ‘Are you pregnant? I have to ask.’ I say ‘no’. He asks how I know. I say ‘I don’t have sex. I’m on my period.’ Like the two fit together somehow. It’s embarrassment. He says he has to give me an x-ray. I agree. Yet again I give him control.

I’ve been here three times before, although he says ‘We’ve done this twice already.’
Silence. I really hate how you make me feel.
‘There’s sometimes a chance that it will make the pain worse’…he’s rattling so fast my brain doesn’t keep up. Actually, it does. I’m way ahead of him. He doesn’t mention the paralysis he can cause, but I know it, and that’s enough. I can feel my heart racing in my chest. The tremor in my hands.

My pain is lesser today. I’m doped on pain-killers because of my viral infection. Nobody asks if I’ve been sick and my temperature isn’t taken.

I keep my mouth shut. A chance I choose to take in a bid to blot out pain.

Blood pressure: one twenty-four over a hundred and three. ‘Normal.’ Heart rate: hundred and two. ‘Normal.’
Not normal, but normal for a chronic pain sufferer.
The nurse is going on a cruise. How nice. She gets to work…have a life…spend money. I get to cry. Lose my job. Experience repossession. I get to watch what I’ve built by working hard collapse. Is there a God? Who has control of me now?

He slings his badge round the back of his neck and starts an IV drip in the wrist of the man directly across from me. Job done. He saunters off casually scuffing his feet. Cocky.

An actor is my perception of him.

He talks about there being ‘no need to over complicate things.’
Over complicate what?!
He needs to get away sharp today because the North Road is closed. He’s rushing. Last time he was tired too. This time he talks so much shit I lose interest. Adoration long gone.

Will he hit the right places?

I know these injections work. I know I want them to continue. He says this is the last time.

We’ll see. I’ll fight. I’m not down yet. Arsehole!
I suppose he can afford to be cocky. He’s a God in blue.


I count down regularly before this procedure. Fourteen days to go. Thirteen. Twelve. Eleven. Ten. Eight. It keeps me sane. Sometimes a day disappears in bed. Without pain relief there is no option but rope, and a tree.

Next port of call is my local health minister then. I’m entitled to pain relief. The GP said so. Aren’t I?

My thoughts: Would you put a dog down if you couldn’t stop its pain?

My point: If you can’t fix me, shoot me. Put me out of my misery.

The cocky fucking arsehole really deserves a slapping!

The big three over, he goes for the other twelve. Stabbed to death in two seconds flat. ‘It’s better if we do it quickly.’ Stab stab stab. Muscles flexed and screaming. Hip, hip, shoulder, shoulder, in-between the blades, neck. ‘Done. Roll over onto the trolley.’

Fuck you. FUCK YOU!

Wet face. Mind racing. Production line. You insult my intelligence. How dare you inject me so painfully you unfeeling shit for brains.

He looks surprised when he sees my tears and I curse being proud.

You got somewhere to go like? Oh yeah, I forgot. The bridge is fucking closed!

Tick tock. I Love You.

I love you. Three simple words. Words that make the difference to who I am. How I feel. What happens to my family and how I face my future. Tick tock.

I’m faced with three simple words. Do I say them? Do I have to feel them enough to say them? I could make all my worries go away. I know he’d like to hear them. Sometimes I nearly do. Sometimes it almost rolls of my tongue like old times.

But it doesn’t matter how much he still cares, because part of me needs something new. Something exciting.

'I' need to find the ‘in’ part of love again.

Should I look at him and say it? Make my life easier? Debt’s would disappear. Food would be back in bare cupboards. Bill’s would get paid, fear no longer buried in the letters mounting on the sideboard.

I make it sound like I don’t love him. Have any feelings. It’s not that simple. Years of life and togetherness doesn’t dissipate when you separate. The clock doesn’t stop ticking. Love doesn’t just die.

It simply slows. Loses time.

Could I find it? Would I want to? Only to be disappointed once again. Only to find it didn’t live up to my ideals. My dreams.

Tick tock.


...How do I love you?

The Diary of a Fybromyalgic - A Patient Guide for the Newly Diagnosed

by Beverley Allgood Brown on Thursday, July 21, 2011 at 10:02pm

Introduction

Thank you for picking up this book because it means you either suffer yourself, or you are one of the wonderful people who love and support someone who does. My heart goes out to you. You have a long and arduous journey ahead.
With time, patience, but most importantly armed with knowledge about this disease, you will be able to help yourself or your loved ones live a happy and fulfilling life.
My story is one that is relayed through text-books written by Doctors, Rheumatologists, and Consultants the world over.
Truth is, I’m different.
I’m not a doctor, nor a rheumatologist, or a consultant. I have no formal training in the medical world, which makes me normal. Just like you. A Jane Doe. Officially all I can say is that I’m a 41 year-old sufferer of Fybromyalgia, and my life will never be the same again.

The worst thing about all this is that I am the bearer of what may be terrible news, but I hope to make it easier for you than it was for me when first diagnosed.
Today, after years of pain and wondering, I was officially given a label. Today, I was finally able to tell myself ‘I’m not mentally ill, my body really is physically sick’ and today, I aim to share with you my story.
If you’re reading this, and you have Fybromyalgia too, my experience may be better, worse, or very similar to yours, but one thing I can honestly say is I’m sorry. I wouldn’t wish what I have on anyone, and I know without asking that if you’re reading this you wouldn’t either.
The biggest problem is that you’re not going to wake up one morning and find out this was all some kind of nightmare. I promise that won’t happen.
It is a nightmare.
I live it every day, as do you or someone you love or care for.

The reason I wrote this book stems from the fact I love to write. It keeps my mind active. I use it as part of my own form of management and therapy.
Upon being given a formal diagnosis I decided to write a record from that day to whatever stage I get to by the end of eighty thousand words. It’s important to reiterate I have passed through many stages getting to this point. I’ve felt the anger, the pain, the overwhelming feelings of loss, and think I’ve finally reached the stage of acceptance.
For the rest of my life, I have to manage this genetic syndrome. This disease.
Now, I have to actively work at making myself the best I can be.
I don’t want to be like the woman at the end of the road who spends her days in bed feeling sorry for herself. It’s not my style, and by the looks of it (because you’re reading this book) it isn’t yours either.
I think it’s very important at this stage to help you understand where I’ve come from and I’d like to give you a little insight into my life. In the next few paragraphs I am ruthlessly honest. I have to because stress, and life events play an intrinsic part of a fybromyalgics case history. Life events cause stress which in turn affects the bodies coping mechanisms. Some of this disease is in your head. it equates to how your body deals with stressful circumstances that have caused you pain in the past. I am not saying you are mentally ill. You are not. Your body is sick, and running on overload.

In 2007 my third daughter (sixth pregnancy) was born. I was thirty-seven. My oldest daughter was eleven and I had a middle daughter just three days under a year old plus a new baby in my arms. I felt ill having had pre-eclampsia which had escalated to eclampsia after the birth, but the hardest part to deal with (over and above everything else) was discovering my child had the soft palate of her mouth missing. She was removed from the ward quietly and without fuss, and taken to the neo-natal unit of the hospital. I stayed within the confines of the ward remaining in the birthing unit because my own blood pressure was being monitored as abnormally high. Again, as I said previously, I felt ill. Worse than normal. To be worse than normal meant I was in a really bad way, because I never ever complained to friends or family. I dealt with it all internally and very often to my own detriment.

Every muscle in my body had ached for the past two years previous to that day, but I hadn’t moaned…and when I had mentioned it to my doctor, it had been put down to the joys of pregnancy.
I had been pregnant for the majority of those two years and (of course), was told ‘any women who experienced hip problems and high blood pressure for a sustained period of two years, or more, most definitely would feel ill.’ Being a woman who didn’t complain, I thanked her politely for imparting the piece of general knowledge that I already knew, and hobbled off home to privately sob into my pillow at the injustice that life had served upon me.
One child at high school, a baby on the hip and one in the crib, I wondered how I would get through the next few hours of sheer pain and tiredness, let alone days.
Years were totally unimaginable.

This isn’t a fiction novel, and for the purpose of showing you effectively where I’m at at the beginning of this diary it’s important you get to know the real me very quickly.
For the five years previous to the birth of my last child and bringing us back to the year 2000, I had complained to my general practitioner of general aches and pains for years, but despite this I owned a successful confectionary business at a local shopping mall. I unexpectedly fell pregnant and during this time I was under immense financial and physical pressure. I decided to terminate the pregnancy under duress. It was no easy decision but neither is it one I regret. Some would think his would be a trigger point for the stresses in my life but it wasn’t.
I can go back further, much further.

In 1984, I took my first job age fifteen.
I’d aimed for office work despite doing no secretarial training at school and much to everyone else’s surprise I secured a post in the proposals department of a large engineering firm called Motherwell Bridge. Engineers Limited. I was often sent up to the drawing board department on the fourth floor, and would stand and wait for plans to go through the heat machine, hopping from side to side to alleviate the ache in my feet, ankles and knees.
Again this wasn’t the start.
Going back further to the days of rara skirts and pedal pushers. Age eleven. 1980, and moving from an English school to a Scottish school I complained incessantly to my mother about pain in my pelvic area and sacroiliac joints.
Back even further.
I remember age seven, 1976, hot summers and tennis on the street. Complaining of achilles tendon pain and aching knees while sucking on cider flavored ice-lollies.
Back further again, age three, 1972, sitting on the floor outside the bathroom while my mother wept for my brother who had died just five days old. I was crying for her, and crying because of the pain in my coccyx. My mother had just become religious and had taught me to pray.
“Please God’ I said, ‘make my mum stop crying, bring back my brother, and make my pain go away.’
This is no joke. These memories are real.
I have suffered these pains all my life with no formal diagnosis. For this reason I am a master at wearing a mask. I am a genius at performance and to all intensive purposes, all my life I have played the part of being, and looking, like a normal girl.
But I‘m not normal.
I have a genetic disorder. A disease. A syndrome.
I am a diagnosed sufferer of fibromyalgia. In short I am a fybromyalgic.

One thing I learned early on in life is that it is normal to feel sad when you lose a whole load of cherished dreams, but its also normal to feel sad when you loose dreams to this disease. To discover you will never live like other people isn’t easy to accept. You’re different. Special, my mother used to say. I didn’t feel special. I felt ostracized. Different. Abnormal. I’d watch other kids through the window. Nose pressed firmly to the glass. Condensation forming neatly in round O’s. I’d be in pain or too tired to join them.
That sense of loss began early…very early, and it never really left. Without getting too deep on the psychological aspects (because of course I am no medical expert in the field), one thing I do want to express is that it is okay to continue feeling loss but the important thing is to address other avenues, which make your life more enriched and fulfilling.

Day One.

Today is the first day of the rest of my life.
Sounds like I’m a recovering alcoholic.
I wish I was recovering. I’m not and never will, but in a positive light I am on the first step to managing the rest of my life and one day the medical field may find a cure.

But firstly, if you’ve picked up this book because someone has told you you might have fibromyalgia, or you know someone who may have it, or you think you have Fybromyalgia yourself, then the first thing to do is get a formal diagnosis...