Surprise!
19 hours ago
Saturday, 30 July 2011
Friday, 29 July 2011
Time flies by
I've just watched a documentary on ITV of Charles and Di's wedding from 1981 - thirty years ago. I remember watching it live with my in-laws because they had a colour telly and we didn't. Thirty years ago, I wish I felt thirty years older but I don't but hey that's history. I did find it quite offensive that they decided to show that wedding especially seeing as what happened and in my own opinion how Diana was used.
But memories are funny things and I'm going to look at the last ten years. I've watched many of my writer friend go on and achieve so much and for that I'm so thrilled for them and I mean that and they know that. But if I put myself back ten years my dreams would have been to have my name on bookshelves, my name in magazines but life took a different path for me. As one car insurance company said to me when I listed my occupation as a writer 'but we don't insure anyone famous,' my reply was 'I'm not famous darling, I'm infamous.'
Ten years ago I was in a wheelchair and had been told I'd never get out of it. That was a hard pill to swallow but what was even harder was the fact that no doctor would give me a diagnosis for my illness, despite the fact it was blatantly obvious to the specialists I was seeing.
Why? Because they were covering up for a misdiagnosis one of their colleagues made. Sounds daft but it's true. So what I was doing was going one step higher but I didn't realise that these guys played golf together and rather than admit that a colleague of theirs had made a mistake, they happily said there was nothing wrong with me. They lied, they made false promises which they never fulfilled. The Queen Elizabeth Hospital in Birmingham reassured me they wouldn't discharge me until they'd got me a diagnosis, the next time I went back they couldn't wait to get rid of me - without a diagnosis.
I travelled to Oxford to see one of the top consultants in the country who knew about Charcot-Marie-Tooth Disease but sadly he also played golf with the guy from the QE and told me there was no reason I couldn't walk and I certainly didn't have CMT and basically I was putting it on. They were all protecting each other. I did at the time have a website showing the deformities in my family's feet and interestingly enough a doctor from South America emailed me and asked if he could use a photograph of my feet and legs in a book he was publishing about CMT because they were showed classic, severe signs of the disease. Hey Cyd Charisse eat your heart out lol.
It's a long story but finally in 2002 I was diagnosed with the disease.
Yes that was achievement but the achievement wasn't mine. I've lived with this disease, the pain, the deformities, the disabilities it causes all my life so for it's normal. But the diagnosis was important because CMT is genetic. My Dad has a mild form of it so do some of his cousins, two of my sons have it, so do members of my sister's family. For them it's not a problem, they live normal lives. This is one of the things about CMT it affects different members of the same family in different ways but not every family member is affected.
For me, I got a pretty dose of it - but that's okay and my reasoning for that is that I've got the gob to shout about it. It remained undiagnosed in my (despite showing very obvious symptoms from birth) for forty one years. But now it's been diagnosed and is recorded in both my immediate family's records and my extended family.
So what did that battle achieve?
If any child born in the future to a member of my family has problems, funny feet which are seriously funny although they can't cure it, they can help delay the effects of it and no one will have to wait forty one years for a diagnosis and hopefully no one in the future will end up in a wheelchair because of it. I did it not for me but for my family and those to come.
And for me, why have I got it so severely - hey the gob came with it lol.
The second major thing I've achieved is getting my family, my sons away from an evil bastard who beat them up, beat me up too and sexually abused my youngest son.
To stand alone, when you're far from the best of health and move everything from your home of fourteen years overnight, to move to an area where you knew no one to ensure safety is something. I did it. Hey the part of Wales I moved to, I didn't even speak the language but we were safe.
Since then we've lost one home because of floods in 2007 and were homeless before we came to Clunbury. Now it's time to move on and face new challenges.
My novels are still on my hard drive - my dreams of being a writer have taken second place to the challenges of life but I have survived.
Those challenges have taken their toll both mentally and physically and with the added complication of not one but three types of arthritis plus a muscular wasting disease and despression - well let's say it's an experience.
But despite everything and even in my darkest moments the flame, which has at times been just a flicker of light has never stopped burning. I was a musician, I am musician, I'll never stop being a musician but I also discovered writing which as I've said before to me, is another form of music, sounds, words that I can still play and enjoy.
So yes, I haven't achieved what I wanted to achieve but my family is safe in every sense and I've done my best - that is my achievement over the past ten years.
Now it's time for me - hey kids watch this space and this too, I'll do on my own.
But memories are funny things and I'm going to look at the last ten years. I've watched many of my writer friend go on and achieve so much and for that I'm so thrilled for them and I mean that and they know that. But if I put myself back ten years my dreams would have been to have my name on bookshelves, my name in magazines but life took a different path for me. As one car insurance company said to me when I listed my occupation as a writer 'but we don't insure anyone famous,' my reply was 'I'm not famous darling, I'm infamous.'
Ten years ago I was in a wheelchair and had been told I'd never get out of it. That was a hard pill to swallow but what was even harder was the fact that no doctor would give me a diagnosis for my illness, despite the fact it was blatantly obvious to the specialists I was seeing.
Why? Because they were covering up for a misdiagnosis one of their colleagues made. Sounds daft but it's true. So what I was doing was going one step higher but I didn't realise that these guys played golf together and rather than admit that a colleague of theirs had made a mistake, they happily said there was nothing wrong with me. They lied, they made false promises which they never fulfilled. The Queen Elizabeth Hospital in Birmingham reassured me they wouldn't discharge me until they'd got me a diagnosis, the next time I went back they couldn't wait to get rid of me - without a diagnosis.
I travelled to Oxford to see one of the top consultants in the country who knew about Charcot-Marie-Tooth Disease but sadly he also played golf with the guy from the QE and told me there was no reason I couldn't walk and I certainly didn't have CMT and basically I was putting it on. They were all protecting each other. I did at the time have a website showing the deformities in my family's feet and interestingly enough a doctor from South America emailed me and asked if he could use a photograph of my feet and legs in a book he was publishing about CMT because they were showed classic, severe signs of the disease. Hey Cyd Charisse eat your heart out lol.
It's a long story but finally in 2002 I was diagnosed with the disease.
Yes that was achievement but the achievement wasn't mine. I've lived with this disease, the pain, the deformities, the disabilities it causes all my life so for it's normal. But the diagnosis was important because CMT is genetic. My Dad has a mild form of it so do some of his cousins, two of my sons have it, so do members of my sister's family. For them it's not a problem, they live normal lives. This is one of the things about CMT it affects different members of the same family in different ways but not every family member is affected.
For me, I got a pretty dose of it - but that's okay and my reasoning for that is that I've got the gob to shout about it. It remained undiagnosed in my (despite showing very obvious symptoms from birth) for forty one years. But now it's been diagnosed and is recorded in both my immediate family's records and my extended family.
So what did that battle achieve?
If any child born in the future to a member of my family has problems, funny feet which are seriously funny although they can't cure it, they can help delay the effects of it and no one will have to wait forty one years for a diagnosis and hopefully no one in the future will end up in a wheelchair because of it. I did it not for me but for my family and those to come.
And for me, why have I got it so severely - hey the gob came with it lol.
The second major thing I've achieved is getting my family, my sons away from an evil bastard who beat them up, beat me up too and sexually abused my youngest son.
To stand alone, when you're far from the best of health and move everything from your home of fourteen years overnight, to move to an area where you knew no one to ensure safety is something. I did it. Hey the part of Wales I moved to, I didn't even speak the language but we were safe.
Since then we've lost one home because of floods in 2007 and were homeless before we came to Clunbury. Now it's time to move on and face new challenges.
My novels are still on my hard drive - my dreams of being a writer have taken second place to the challenges of life but I have survived.
Those challenges have taken their toll both mentally and physically and with the added complication of not one but three types of arthritis plus a muscular wasting disease and despression - well let's say it's an experience.
But despite everything and even in my darkest moments the flame, which has at times been just a flicker of light has never stopped burning. I was a musician, I am musician, I'll never stop being a musician but I also discovered writing which as I've said before to me, is another form of music, sounds, words that I can still play and enjoy.
So yes, I haven't achieved what I wanted to achieve but my family is safe in every sense and I've done my best - that is my achievement over the past ten years.
Now it's time for me - hey kids watch this space and this too, I'll do on my own.
Holy Island
Last night wasn't a brilliant night in the whole scheme of things. It didn't help by falling asleep on the sofa and was worsened by the trip to Bridgnorth to see my consultant except I didn't see him, I saw his nurse. It certainly wasn't a wasted journey because it was useful and informative visit but I did feel let down when I walked into his room and was told he was in Croatia. Mind you I was glad I didn't have to drive there to see him.
But no, last night wasn't feeling too happy and when I went to bed I desperately needed something to read that wasn't a woman's magazine. I picked up a book, that I've read several times before but it's kind of special because it has a link with two very special people in my life.
The book is the story of Peter Mortimer's one hundred stay on Holy Island, just off the Northumberland coast line. It's a fantastic read of a man who'd already decided that he was going to go there to write for one hundred days, what he didn't foresee was the death of his father, just before he went and his nephew having to have major surgery - however, he took the 'selfish' decision of a writer (and I don't mean that in any nasty sense) and went anyway, very concious of the fact he was leaving his elderly mother alone when she needed him most.
The book is written in a diary form and tells of his times there. His rather infrequent interaction with the locals, the isolation, the awareness that when the tide was in, he was cut off from everyone and everything he loved. I do wonder actually when reading the book other than his diary, how much writing he actually did but the diary itself talks about his experiences, feeling and emotions.
Holy Island for me is a special place. I first there when I was about eight or nine on a school trip when I lived up in Gateshead. We did the tour of the abbey on a drizzly day and then went into the gift shop. I was eagerly clutching my ten bob note (no you don't carbon dating to realise this was before 1972). As I wondered around the shop I saw the most beautiful cross and chain that I'd ever seen in my life and I knew it was perfect for my Mum. It cost seven shillings and sixpence but it was worth every penny. It was gold coloured and inside the shape of the cross were stones of different colours. It was large and totally unlike anything my Mum would ever wear, goodness she didn't even have her ears pierced, because as she said, if God meant you to have holes in your ears, he'd have put them in.
I never saw Mum wear that necklace and to be honest I don't blame her but I know she kept it safe in her treasure box until the day she died. I don't know what's happened to it now but Mum treasured it for all those years.
The second time I went to Holy Island the weather was in complete contrast - it was beautiful. And after wondering around the Island, which bore no resemblance to the one I half remembered from childhood we went up to the castle and had a wander round. Finally finding a spot at the top where we could sit down and have a very late lunch. It was stunning just looking over the beautiful blue of the North Sea that was until a strange asked if we were staying on the island. Lunch suddenly forgotten about as we realised that sea would cut us off from the mainland if we didn't get a move on. I don't think it would necessarily have been a problem other than we were running a course in Alnmouth and there would be people waiting for us to show it - not a good time to be stranded.
We did make it back, I think with about twenty minutes to spare but to be honest I didn't find that much comfort after hearing about someone the previous weekend being caught in the tide and having to be airlifted to shore, minus their car. Those words still make us laugh today as well as remind me of a wonderful afternoon out.
So, last night after spending a bit of time on Holy Island with Peter Mortimer and two very special people. Although when I went to bed I was feeling fed up and lonely, I slept with a smile on my face - a good book and very happy, special memories.
But no, last night wasn't feeling too happy and when I went to bed I desperately needed something to read that wasn't a woman's magazine. I picked up a book, that I've read several times before but it's kind of special because it has a link with two very special people in my life.
The book is written in a diary form and tells of his times there. His rather infrequent interaction with the locals, the isolation, the awareness that when the tide was in, he was cut off from everyone and everything he loved. I do wonder actually when reading the book other than his diary, how much writing he actually did but the diary itself talks about his experiences, feeling and emotions.
Holy Island for me is a special place. I first there when I was about eight or nine on a school trip when I lived up in Gateshead. We did the tour of the abbey on a drizzly day and then went into the gift shop. I was eagerly clutching my ten bob note (no you don't carbon dating to realise this was before 1972). As I wondered around the shop I saw the most beautiful cross and chain that I'd ever seen in my life and I knew it was perfect for my Mum. It cost seven shillings and sixpence but it was worth every penny. It was gold coloured and inside the shape of the cross were stones of different colours. It was large and totally unlike anything my Mum would ever wear, goodness she didn't even have her ears pierced, because as she said, if God meant you to have holes in your ears, he'd have put them in.
I never saw Mum wear that necklace and to be honest I don't blame her but I know she kept it safe in her treasure box until the day she died. I don't know what's happened to it now but Mum treasured it for all those years.
The second time I went to Holy Island the weather was in complete contrast - it was beautiful. And after wondering around the Island, which bore no resemblance to the one I half remembered from childhood we went up to the castle and had a wander round. Finally finding a spot at the top where we could sit down and have a very late lunch. It was stunning just looking over the beautiful blue of the North Sea that was until a strange asked if we were staying on the island. Lunch suddenly forgotten about as we realised that sea would cut us off from the mainland if we didn't get a move on. I don't think it would necessarily have been a problem other than we were running a course in Alnmouth and there would be people waiting for us to show it - not a good time to be stranded.
We did make it back, I think with about twenty minutes to spare but to be honest I didn't find that much comfort after hearing about someone the previous weekend being caught in the tide and having to be airlifted to shore, minus their car. Those words still make us laugh today as well as remind me of a wonderful afternoon out.
So, last night after spending a bit of time on Holy Island with Peter Mortimer and two very special people. Although when I went to bed I was feeling fed up and lonely, I slept with a smile on my face - a good book and very happy, special memories.
Wednesday, 27 July 2011
My dear darling friend Heather
I ain't that clever with words
And I don't claim to be a poet
I have an idea, scribble it down
Upload it and say sod it!
I do love Heather dearly but she did make laugh today. She sent me a card, it's something we do if we see a card the other might like. This one had a sketch drawing of a cat rubbing faces with a woman in the bath. Apparently in years gone by Heather had a cat that would that.
Heather is a very accomplished and gifted poet in her own right and has won or been placed in many anthologies and competitions but in her card she wrote 'I have a look at any poems as you have the dark, disturbed soul poet's should maybe have.' Hmmmmm
Now before anyone goes into a spin unlike Sylvia Plath I don't have a gas oven so I'm not going to stick my head that but maybe I should laugh more - I don't know.
It's funny though because to me words are like music and in the day when I played music there were pieces that could make me howl with laughter and there were those that could easily reduce me to tears. The same with words, they're such a gift and we do have a beautiful language with which to express ourselves. Never take words for granted they have their own special meanings and put together carefully can produce a symphony which is a delight to the ears.
And as for poetry well, I just love Wendy Cope particularly her poem Loss
Right pontificating over, this cheerful little soul is going to bed.
Night, night God bless x
Saturday, 23 July 2011
A simple prayer
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Wednesday, 20 July 2011
The National Memorial Arboretum Alrewas
Today the Queen will be paying to tribute to the soldiers killed in Afghanistan in 2010 at the National Memorial Arboretum at Alrewas. There will be, besides the Queen all the dignitaries that go with such an occasion and families of those brave men and women that were killed but for me there will be someone quite special missing.
My young cousin Mark Turner was killed in Afghanistan on 4th April 2010. I didn't Mark, but I grew up with his Dad and his uncles and when I learned of his death it brought this horrible war even closer to home. I have never agreed with this war, I'll be honest but I do totally respect those that have been called on to go out there, they didn't question, they didn't refuse, they went to do their job and many sadly have suffered the consequences of that.
Mark was only 21 when he was killed, still a young lad really. Apparently he was a right character but he was a very brave man.
So as the Queen pays tribute to 'our kid' just remember those who are out there and pray that soon this war will be over and our troops can come home safe.
My young cousin Mark Turner was killed in Afghanistan on 4th April 2010. I didn't Mark, but I grew up with his Dad and his uncles and when I learned of his death it brought this horrible war even closer to home. I have never agreed with this war, I'll be honest but I do totally respect those that have been called on to go out there, they didn't question, they didn't refuse, they went to do their job and many sadly have suffered the consequences of that.
"Rifleman Turner, 'Turtle' to his mates, was one of the bravest men I have ever had the pleasure of working alongside. He had an inner bravery which made it even more humbling."
Major Mike Lynch
Mark was only 21 when he was killed, still a young lad really. Apparently he was a right character but he was a very brave man.
So as the Queen pays tribute to 'our kid' just remember those who are out there and pray that soon this war will be over and our troops can come home safe.
God bless you Mark.
Your whole family are proud but humbled by your ultimate sacrifice.
xx
Greater love hath no man than this, that a man lay down his life for his friends.
John 15:13
Greater love hath no man than this, that a man lay down his life for his friends.
John 15:13
Tuesday, 19 July 2011
One of those nights
You know the ones I mean. When your exhausted, yawning your head off and longing to crawl beneath the quilt. Bedtime can't come quick enough and then finally, days' tasks completed you wearily climb the stairs to bed. You look longingly at the pillows and you undress and for me, remove my teddies, doll and cushions off the bed. Throw the quilt back, sigh with relief as your head hits the pillow and then suddenly....
Funny word that suddenly, I was told that it was a word that writers should avoid but sometimes it's the only one that works. Immediately, yeah maybe but suddenly, to me anyway has that bit of drama about it. But, I digress.
Suddenly my eyes were wide open, my brain revved up and promptly launched itself into fifth gear and that was that. I tossed, I turned and tossed and turned again. I had pleasant thoughts, I even tried counting sheep but it was too dark to see them. Joys of living in Clunbury - no street lights. Even the cows out the front were noticeable by their absence or rather were getting a better night's kip than me.
2 o'clock, 3 o'clock and then my mind turned to the fact that I had to be up at 7.45 and it was getting perilously close to the time the alarm would scream at me so I started worrying about that. I'll feel like death in the morning, ran through my head, yeah that did the trick, I don't think. I've got to drive, my eyes will feel like I've got half of Rhyl sands behind them. And I've got to do this tomorrow and oh, must do that and then there's a pile of ironing.
3.33am I know that because the clock told me, actually it's fifteen minutes fast to try and get me up in time but when you know that, it doesn't work, I got up and came downstairs for a drink. It was at this point I did think about blogging but if you guys saw the time, you'd know I couldn't sleep so there would be nothing to write about today.
Anyway I had my drink and went back to bed. Snuggled up again under the quilt, decided this time to try and count sheep in my head instead of the ones in the orchard - but that didn't work either. By 3.55 but actually fifteen minutes earlier, I had go to the loo.
Back in bed, the clock - oh so slowly made it to 5am.
And then the alarm went off and yes my eyes did feel like I had the sands of Rhyl behind them. And yes I did feel like death warmed up and of course, I could so easily have turned over and gone back to sleep - but no, I drove the lads to work, have drunk countless cups of coffee and now as I type the words are blurring on the scream and my thoughts, yet again turn towards to my pillow and my quilt.
Early night tonight me thinks.
Funny word that suddenly, I was told that it was a word that writers should avoid but sometimes it's the only one that works. Immediately, yeah maybe but suddenly, to me anyway has that bit of drama about it. But, I digress.
Suddenly my eyes were wide open, my brain revved up and promptly launched itself into fifth gear and that was that. I tossed, I turned and tossed and turned again. I had pleasant thoughts, I even tried counting sheep but it was too dark to see them. Joys of living in Clunbury - no street lights. Even the cows out the front were noticeable by their absence or rather were getting a better night's kip than me.
2 o'clock, 3 o'clock and then my mind turned to the fact that I had to be up at 7.45 and it was getting perilously close to the time the alarm would scream at me so I started worrying about that. I'll feel like death in the morning, ran through my head, yeah that did the trick, I don't think. I've got to drive, my eyes will feel like I've got half of Rhyl sands behind them. And I've got to do this tomorrow and oh, must do that and then there's a pile of ironing.
3.33am I know that because the clock told me, actually it's fifteen minutes fast to try and get me up in time but when you know that, it doesn't work, I got up and came downstairs for a drink. It was at this point I did think about blogging but if you guys saw the time, you'd know I couldn't sleep so there would be nothing to write about today.
Anyway I had my drink and went back to bed. Snuggled up again under the quilt, decided this time to try and count sheep in my head instead of the ones in the orchard - but that didn't work either. By 3.55 but actually fifteen minutes earlier, I had go to the loo.
Back in bed, the clock - oh so slowly made it to 5am.
And then the alarm went off and yes my eyes did feel like I had the sands of Rhyl behind them. And yes I did feel like death warmed up and of course, I could so easily have turned over and gone back to sleep - but no, I drove the lads to work, have drunk countless cups of coffee and now as I type the words are blurring on the scream and my thoughts, yet again turn towards to my pillow and my quilt.
Early night tonight me thinks.
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