Bowie

This post has been a while coming because the shock of hearing of Bowie’s death has taken time to sink in. He always seemed other-worldly and so it seemed he might be immortal. I suppose, in a way, his mark on popular culture has been so great that he (the artist) / his work will be immortal.

Since Monday morning, a lot has been said about how Bowie offered up something to, in particular, people who were teenagers in the early and mid 70s. Most teenagers feel that they are ‘other’, misunderstood, different. They look for a connection, a reassurance that somebody out there understands.

Ziggy was certainly ‘other’ in the early 70s. I don’t think that people who are now younger than, say, 50 can understand how extraordinary it was to see Bowie/Ziggy in 1972…and yet he seemed to offer a possibility that we might be able to follow. The make-up, costumes, theatricality seemed beyond what we knew in suburbia and the attitudes and imaginings in the lyrics spoke of things we’d never heard of or viewed with wonder or fear or derision – until Bowie offered them as another ‘way to be’ that was legitimate, possible, desirable.

Yes, there were other bands with all the ‘glitter’ but they were mainly like run-of-the-mill 'blokes' dolled up for a laugh or the money. Bowie meant it. There was Roxy too …but they were so otherworldly, esoteric, mannered as to be almost scary and inaccessible: Manzanera’s fly specs, Eno’s strange Dr Strangelove-meets-the alien look and Ferry with his louche sneer. Bowie, by comparison, grinned in a way that said ‘I’ve got you…come to bed…'don’t laugh babe, it’ll be all right’'…and that was just to the boys. You somehow felt that Bowie would show you a world of mystery and wonder and take you to places you’d never imagined but had always longed for and you’d be safe in his amazing hands.

’Oh no love, you're not alone
No matter what or who you've been
No matter when or where you've seen
All the knives seem to lacerate your brain
I've had my share, I'll help you with the pain
You're not alone..’

 David Bowie - Rock 'n' Roll Suicide

I was hooked. He’d shown me the way and made me realise that it was possible to escape suburbia and a grammar school education – even if it took me years to summon up the courage to make good that escape.  I could become a 'Kook' and be proud and unashamed.

Kooks

So what of my memories of Bowie ?

I think the first time I really heard him was when I stayed with my older (and quite glamorous) cousin who had already seen Bowie perform and been asked backstage to meet him. We were driving home in her Daimler at night and she put Hunky Dory into the tape player. There were the opening chords of ‘Changes’ as I floated along in the back seat: stars and inky sky speeding past down dark wooded lanes and those tinkling piano notes ending the song as we pulled on to the motorway. It was like a dream.

At school there was J who had her red hair dyed even more red and cut in an exact Ziggy 'do' and K and M who went to all the concerts and got to the front at The Rainbow and their friend Tommy who was devoted to Bowie and had a red sequin jacket which he wore to gigs. He was so scared his parents would find out about the jacket and the satin trousers he wore (and the eyeliner..and blush) that the jacket and schlapp had to be kept at a friend’s house in case his Mum or Dad found them.  The very idea of boys wearing make-up in the early 70s was outrageous, scary, and the idea of girls teetering along in their smock tops, platforms and ‘bippity boppity hats’ to see an androgynous seducer even more so.

There was the Romford Odeon gig and then later a long relationship which is marked out by Bowie tracks from Hunky Dory all the way through to Lodger with it various sartorial influences – haircuts, jewellery, cigarettes I’d smoke, books I’d read because Bowie had mentioned them…..and the romance of serenading each other with ‘The Prettiest Star’ and the fantasy of having children and our lives being like the words of ‘Kooks’. And now, as I listen to some of the songs of that period being endlessly played on the radio and TV I realise that so many of the lyrics became just part of my everyday vocabulary – and they still are: ‘..satin and tat’,’…tigers on Vaseline’ etc etc.

Later Scary Monsters saw me through a very difficult time. I was holed up in my room dissecting the lyrics for meaning and finding new meanings and new resonances at every turn.  The work that came out of it got me a place at art school.

Then there was the Milton Keynes Bowl gig in 83. I spent a week hand-painting a white boiler suit with images of electronic circuitry and made earrings from bits out of a broken transistor radio. In the event, it was a terribly hot day and the boiler suit, the amount of make-up and the very teased and scrunched hair wasn’t practical --- I was SO hot --- but it was a great day – apart from the two and a half hours it took to get out of the car park and arriving home at 5 in the morning before having to go to work for 8.30. It was such a huge venue that Bowie was a speck in the distance or a blur on a screen – of yellow blond bouncy hair and pale blue suit --- but he was there and so was I.

My hair was a passport to all sorts in those days: hair shows, bits of local modelling work and I remember having to slowly walk down a catwalk to the tune of ‘Goodbye Mr Lawrence’ as I touched other models who were inside black cloth ‘bags’ and emerged as the touch of my hand awakened them.

…and now he’s gone from this earth and left us here to cope....but he's left a huge legacy and a generation of people who are more aware, more open to possibilities

Other people of my age have said the same but Bowie really did point us in all sorts of directions and not just the superficial. I’m glad to know he was also generous, kind, polite and honest. Other heroes have proven to be less noble.

RIP DB


This piece by Kathryn Flett in The Telegraph tells a similar story. There must be millions of people in their late 50s, early 60s who feel like a piece of them his been ripped out

http://www.telegraph.co.uk/music/artists/why-those-who-were-teenagers-in-the-70s-will-feel-the-loss-of-da/

In the Middle of Nowhere

I was going to write a (probably long) piece about how things are at the moment. As I contemplated what I was going to write this came on the radio. 

As usual Dusty puts it much more succinctly than me. Its strange how often she 'appears' when I am floundering. I've loved her music for so long it's as if there's a strange link *

So...nearly 60, M.E., Fibro....so many situations where we are waiting, hanging, floundering and have no real influence upon the outcome and for me the M.E. means I have no job, no money, no real say or influence so I sort of float along fitting round everyone else because they all have proper lives and I have even less influence.

In the Middle of Nowhere.

* ...and no I'm not some deluded weirdo who thinks I really have a psychic link with an old 60s pop star...it's just odd the way she pops up at unexpected moments when I'm floundering. Maybe I should take a leaf out of her book and smash some plates, fling some flans :)

A blast from the past

A long long time since posting anything here. Life has been too busy and my health just doesn't seem to have picked up properly since a slump about a year ago. I have had to stop as much 'screen time' as possible and I am trying a new regime of homeopathic treatment which was recommended by a friend in the USA who I knew from College 40 years ago. She has benefited from this treatment massively and we share a similar medical history in that she also had Epstein Barr Syndrome when she was about 17.

However, in the never ending quest to find that special treatment that will 'fix me', one thing has recently knocked me for six. We are downsizing --- clearing out all sorts of stuff from way, way back. In the past few days I came across my mother's diaries. Some of the entries are indecipherable to me as they are written in shorthand but some are all too clear and what emerges is a record of someone who was probably living with fibromyalgia or M.E.

I have always had a suspicion that M.E. was the cause of my mother's constant ill health but now I have a sort of record in black and white. There are also entries which mention me being ill as far back as the 1970s. One entry from the early 80s, describes how ill I had felt for weeks and how I went to the GP and then felt fobbed off with blood tests which came back with 'normal' results. There are references to the pain I felt in my legs,in my arms, looking tired and thin, having difficulties with perfumes, food, eczema.

I knew all this of course but, whilst living a life with children and the career I once had, details get forgotten. I can't remember any of that last episode with the blood tests.

Reading those diary entries makes me wonder if there's any real hope. Do I have any realistic hope of ever, ever being well -- a state that I cannot remember, a state which is in many ways meaningless to me and not part of my reality. Reading those words makes me doubt the future because it makes me wonder if the story I have been telling myself and others for years --- that I was originally well but had glandular fever when I was 4 and then another bout of the same at 16/17 --- is true. Was I ever really well or is there something in my genetic make-up that means I was bound to become unwell and never have the same energy as other people, always destined to have the aches and pains of fibro, always destined to have more and more sensitivities to chemicals, food and so on and so on and so on ?  Is there any hope at all?

2014...will there be positive changes for people with M.E. ?

Another year begins and, like many others, I start it with good intentions and a collection of aspirations and dreams. In my case, any dreams I might have are hampered by chronic ill health and a lack of energy so that, rather than drawing up a 5 point plan (as I used to do when I was in better health) I haver about what should be a priority and what is realistic in my situation.  This is akin to having a split personality with one side of me encouraging big plans and really 'going for it' and the other side standing to one side,  wagging a disapproving finger and tutting at such foolish notions.

In the back of my mind are all the people I know who also have M.E.,CFS, Lyme and  other misunderstood and poorly diagnosed conditions which take a massive toll on energy and any internal resources to plan, move forward and achieve. In particular I think about those friends who are at the severe end of the spectrum of these kinds of illness and who spend their days simply surviving from one minute to the next; breathing slowly, counting the seconds, minutes, hours and wondering what the next day will bring.  I've been there too....in that unbearable dark place where you never quite know whether you will survive the day or really want to survive the next one.

Still, for me, that is the past and in more recent years I have been able to do more within the carefully managed pocket of energy in which I exist.  All the same I  wish I  could identify what made the difference; what brought me forward from severe to moderate.  I have no idea, really, how I got from being so ill in 2001 ....all day every day in the dark with no stimuli, nauseous, in pain, giddy, terrible headaches etc etc to where I am now.

Time ? Resting ?  Luck ? 

What I do know is that any improvement is terribly fragile and one can never take one's 'eye off the ball'.  It's so easy to be duped by apparently feeling well enough to do stuff and then, too late, realising the damage that's been done --- as I discovered about four years ago when I became over-confident and deluded and soon went sliding back down the 'snake'. It took me nearly two years to climb back up the ladder but, even so, every relapse seems to take its toll and you never quite regain all that you lost.
 

It's easy to be encouraged by people who care about us. They want us to be better because they care and so they encourage us to 'try'. Loving them back we want to please, to respond to their caring and easily fall into the trap of trying just that little bit harder than we should. The thing is, so many of us look reasonably healthy ('..but you look so well ....' !) and so I suppose outsiders can see no reason why we shouldn't/wouldn't accept their encouragement.. In my case, I also have an internal script that constantly doubts how ill I  really am and constantly questions how much I could do if I did try harder, wasn't so flaky, wasn't such a wimp. This comes from years and years of living without a diagnosis and being told my symptoms were psychosomatic and caused by anxiety, depression, or some personality flaw, weakness. It makes my whole situation very precarious..

Within my group of M.E. friends, there has been discussion about support groups and forums --- how supportive they really are and how an air of competitiveness can creep in about who is the most ill, who deserves the most sympathy.  Personally, I don't think there will ever be a really safe place to go until we have proper tests that verify our illness and the particular condition we have. I think we are all in slightly different health situations which have been collected together under the umbrella term of M.E./CFS and so there are bound to be doubts and discrepancies which lead to jostling about who deserves more help, more pity, more understanding and the medical establishment has created a situation which is divisive and unhelpful. Over-stretched NHS services for people with M.E. are based on the premise of CBT, GET and drugs being the best treatment for our conditions. When those treatments don't help, patients feel let down and misunderstood. They begin to try and help themselves and search for more effective treatments when they have no medical knowledge and no real understanding about physiology, how vitamins and minerals and the processes of the body work together,  accepting the 'expertise' of all manner of theorists and (at worse) charlatans.  The whole scenario is a mess.

So where does that leave us at the start of another year ?  Well, for me, I shall hold on to my hopes and aspirations but try to keep them within manageable bounds. I hope that 2014 will be kind to everyone but, in particular, I wish with all my heart that my friends who are 'down there with the snakes' can find a few rungs on a ladder and begin to haul themselves back up towards better health

Look ! I'm in a band

Many many moons ago, my dear chum Lee Lee Ingram and I were saying how much we missed being creative and how much this illness gets in the way.

Ever one to grasp the nettle (!) Lee Lee said 'Why don't you write some lyrics and I'll put a tune to them'......and from that has grown a project which has now culminated in the formation of our band Dropkick and therelease of our first track 'Trapdoor'.  It has been a real labour of love (and many giggles). The track has a sort of electro/disco/post punk/feel: a tale of twisted infatuation and naughty goings-on with a gimlet eye that looks back to disco whilst the other eye looks forward to party and passion.  Lee Lee did two great remixes of the track and then we launched a competition for remixers. From their entries we selected another 5 remixes and so we had 8 tracks for release --all very different.
 
We have been fortunate enough to enlist the support of a Dutch record label called Noisj who will produce CDs and manage the digital download release for us. The label owner's words were something like 'this is just to weird not to be heard' and 'I think there is a huge market out there for you'...so weird in fact that they decided to create a new label for our music- N.R.G.T.C.
The official release date for the CD and digital download is 28th November 2013, but it is available NOW on pre-order. By pre-ordering you will help Noisj to get an idea of how many CD's to manufacture. You can of course just pre order the digital download if you dont want a CD. Oh, also if you pre-order you will immediately get 2 tracks off the EP digitally. The EP will be available through itunes and Amazon etc after the 28th, but for pre-orders you need to go to this link - http://noisj.bandcamp.com/album/trapdoor
The fabulous Miss Mitsi B painted the cover art for us and she also features in the video which she produced for us
http://www.youtube.com/watch?v=fmHUUi1DwNw
 
To see more of Mitsi's great artwork go to her website here - http://www.mitsib.com

If you are on Facebook then please like our Dropkick Band page - https://www.facebook.com/morefordropkicks

Lastly, please share this around because as well as this being a really fun project, any monies we raise from the sale of the CD and downloads will go towards medical expenses for Lee Lee and another vintage Balenciaga Housecoat for moi

x

A toe in the water and a storm in head and heart

In the past few months I have been attempting to move on from all of last year’s Benefits misery: to try and reconnect with things I am good at and which give me some pleasure; to try and be out in the world more and at home or in the virtual world less.

I could foresee some of the problems this might unearth. There are others I could not have foreseen

I was asked if I’d like to help out on a sewing project for people with mental health issues at out local museum.  There were four sessions and I managed to get to two. The group was made up of arts workers, museum staff, volunteers, people with mental health issues and CPNs. I wasn’t sure where I fitted in at first but, after conversation and a relaxed approach, I found that I had a lot of experiences and knowledge in common with the arts and museum workers (we had worked in the same places at different times) and everyone was very friendly.

At first I found it heartening to be part of the world where I used to feel so comfortable: talking about art, making, museum collections, history, and ways to develop projects. I could feel the old Cusp re-emerging and coming to life.
However, over time I realised that old Cusp was just that…old, gone, in the past …and the more I listened to what people were doing, where they were going, had been, had planned, the more I was reminded of what I could do long ago and the more mindful I became of how little I can achieve now. I realised that, by choice or design, I had been living in a narrowly bracketed band of energy which felt like ‘living’ but was in fact existing on the margins of what other people call ‘real life’. 

The whole business has confused and unsettled me.

Overall the project was a success and a large part of me enjoyed contributing in some small way. The facilitator asked me if I would like to help at another group, an art group, at the seaside. It’s a 30 minute drive and something I rarely attempt alone. I was very hesitant about accepting her offer because I hate to let people down: if I say I’ve committed to a project I really commit to it…but I told her that I would attempt to be there and reiterated that, because of the bastard M.E., it might be difficult some weeks. 

Sure enough, I have missed the first two sessions. At the start of the project I would have been lucky to manage a drive to my local shops, two miles away, let alone a 45 mile round trip with a 2 hour art session as well. This week, despite feeling exhausted, I made myself go. I didn’t want to let down the Project Leader and I wanted to be part of that world again.

The group is small and lovely. The other volunteer is warm and friendly and, again, I find myself unsettled and exhausted by the whole process. All the time, there are echoes of how I used to be, what I used to do, what I could achieve. All the time there are echoes of what I cannot do now: echoes and tremors of how I have no real goal now but drift along, buffeted by ill health, family responsibilities and necessities.  What’s more, when I was working, I had two projects running in this seaside town for over 5 years. It was my regular ‘haunt’ and everywhere I go, I see the old me.

In addition to all these echoes, my Pensions Company have, somehow, got wind of the fact that I have done a small amount of volunteering and seem to see this as a glimmer of hope of me returning to work: wanting to know how often I attend, how long for, what I actually do there. They also got wind of an online art project I followed last year and want to know ‘ …what are my plans for a follow up and the work that was produced…’ as if I am going to launch myself at the art world with a major exhibition. The course was online, six sessions and for self-expression: my desperate attempt to find a way of expressing all the turmoil within that had been unearthed by the wretched ESA assessment.

Everywhere I turn it seems I am reminded of how much other people can do, how quickly, how organised they can be and how everything seems to take three times as long for me and drags on and on as I try to complete a task.

If I speak to people about my misgivings, (i.e. people in good health) they say ‘Don’t look back, look forward’….but to what ?  What am I looking at ?

Will I give up volunteering ? No. For all the difficulties and rumblings, I enjoy it too much and there is a glimpse of what it feels like to be useful and recognised as me rather than as a role in someone else’s life but I still have to find a way of resolving all these unsettled rumblings.

Was the ESA assessment that I was ‘fit for work’ correct ? No…not if these experiences are anything to go by. This is hard enough. The idea of being expected to turn up to a place of employment on a regular basis, at a specific time for a specific number of hours is ridiculous when applied to me.

I’m not sure I’m fit for anything

Going Nowhere

The wretched torment of Work Capability Assessments and ESA Tribunals and the fall out has finally reached a peak. I am more than miserable and hopeless.

Everything and everybody either makes me more miserable, more resentful or feel an even greater sense of loss of control.

Everywhere I turn I seem to be smacked in the face by the fact that I no longer really exist.

I am 'fit for work', so I must be well and therefore not eligible for any Benefits.
If I must be well then I must be able to work...but I'm not well enough to work (my doctor says so) so at least I can do some voluntary work. 
I apply for some voluntary work but so far nobody seems to want what I have to offer (and to be honest I don't have much faith in what I have to offer anyway --- transference ?).

I look at Adult Ed. classes. They are far beyond my means (since I no longer have any Benefits or money of my own) but might be affordable if I was claiming ESA or JSA or DLA.  I'm not eligible for any of those so I cannot afford to join a class.
In all honesty, there aren't any classes I want to join.
 
I am useful at home for looking after other people. There are always other people to look after at home....or other people's dogs. I can't have a dog of my own anymore because I can't afford to have a dog.

I am stuck

I am hopeless

I am lost

I am weary

Like many people I have had my share of difficulties and rough times. Usually I have been able to pick myself up, dust myself off and carry on...not 'letting the bastards grind me down'. This time I don't seem able to do that...or not for now.



Congratulations Ian Duncan-Smith and all your grand plans.

Congratulations Coalition government on all your media spin about Strivers and Skivers: an easy way to set one person against another, to make a very complex and difficult situation into a seemingly 'black and white' issue.
I used to be a Striver....then I was a Skiver...now I'm neither (heh !...a rhyme...maybe I'm a poet ??).

I can't skive and I can't strive...so what am I ?


....a little rudderless boat floating round and round and round in circles going nowhere with no name on the hull


(You might think the choice of song and singer is rather 'quaint'...      Lena Zavaroni !!!

Wasn't she that girl with Hughie Green who sang rather over dramatically when she was 9 years old ?

She was. She was also anorexic and she was the friend of a friend of mine who died from anorexia. Lena died too. She was neither one thing or another --- a child star who had grown up and grown up the 'wrong shape' (i.e. 'fat' ...which was NOT what you wanted at Stage School in the 70s) so she tried to control her food, her environment, her relationships so that she would 'fit' and find some role that felt right. It didn't work and she lost the battle.

So, despite the schmaltz and ickiness of the song and delivery...it's all rather apt because, although I'm not anorexic and I have no intention of doing away with myself, I do feel like I am going nowhere and this song and the singer have direct connections to my own life)