Families

My partner's aunt has died suddenly. She was 86 and had been in ill health but it was still a shock. She was one of the sweetest, gentlest women I have ever met. Her English was stilted (she was part of the Belgian side of the family) and it was difficult for her to communicate because of her poor English and her deafness but, still, she always had an aura of calm and safety.

She was remarkable for she married an Englishmen just after the war and bore 14 children. Three babies died but 11 survived and she has spent her later years surrounded by a huge family of her own children, grand children, great grandchildren and even great great garnd children. The experience of raising this huge family --- often alone since her husband had to work nights and was asleep in the day --- seems to have equipped her to face any situation with tranquillity and a smile. She glided through life like a swan. Her passing marks the end of that particular generation of the family so it is a really momentous event in the family.

In one way all this is by the by. She was my partner's aunt and so I am not directly related, but what it does signal is how long my partner and I have been together and my own sense of ageing and mortality.

When I first met the aunt she was in her late 50s --- not much older than I am now --- and it makes me realise that the lives of my partner and I are entwined through so many experiences; joyful and sad, the births of our own children and others in the family, the deaths of family and friends, the places we've lived, the people we've known.

I seem to have come to a place where I realise the richness of being alive past my half century and managing to maintain a relationship for over half that lifetime. I wonder how we do it when so many people we know are divorced or separated. We recently looked at old photos with our children and realised that every other couple in those photos, bar one, was now apart. It's not luck and it's not good fortune. It's not 25 years of roses round the door and sunshine. Maintaining a relationship with anybody over that long a period is a real commitment and necessitates hard work, endurance, the ability to change, be flexible, know when to say something and when to keep quiet.

When I think about the marriages of my parents and my partner's parents I see that partly the skills have been learnt from them. They were both married for over 40 years --- but we live in a very different age with different demands and expectations: roles are not so clearly defined, children are not so biddable. The lifestyle that we Baby Boomers were promised --- of living in silver jumpsuits, eating pills for food, robots for every task, bags of leisure time ---has not materialised. Instead everybody seesm to work harder, rush hither and thither crammig ever more activity into their lives and if any free time materialises many people focus on the pursuit of acquisition --- new clothes, new gadgets, more holidays, more 'entertainment' ....more 'stuff'.

If you knew me in RL you'd know that I am not conventional in many ways --- never have been and cannot be --- and yet somehow we seem to be raising our children in a very traditional situation where we all have the same surname, have lived in the same place for many years and are part of a community. I don't know if this is better or worse than growing up in a situation where there are other half or 'half-half' siblings; where sections of several families interweave to provide a more complex tapestry through which to support the children through their development. I do hope that somehow we can endure and come to old age like the Belgian aunt who had seen it all and more and glided through life like swan

Pussy cat, pussy cat where have you been ?.......

Well my little blogeroonis where do I begin ? It's been so long since I've had a chance to write a proper post; although I hope you have enjoyed sharing my latest musical obsession.

The last couple of weeks have been a blur of school stuff, daughter's birthday, daughters' party, son's latest project (with which he needs help and supervision and I'll let you know about that in due course) and the half term holidays and PD days where my two little angels manage to blag an extra day off school whilst teacher supposedly involves him/herself in 'Personal Development' --- probably kicking off the shoes and drinking Pimms all day whilst running off a few worksheets on the copier (Here I jest, for I come from a family of teachers and know that the myth of those 'lovely short hours and long holidays' is exactly that --- a myth. All I ever saw my parents and aunts and uncles do was prepare, mark, admin. etc in the holidays. That's probably why I left teaching before I really began.)

Daughter's birthday went well. I had thought about another sock monkey as she so adores last year's fella. He's so adored that he has been everywhere and is consequently filthy and tatty but then that's love for you.

Instead I opted to fashion a new creature. Daughter would dearly like a pussy cat but it's no go as the fur sets off the old allergies and within minutes she is streaming and itching so what better than a puss cat doll (No, not a Pussy Cat Doll; I don't want that kind of influence going on)

And here she is

She's made from calico and her features are painted and sewn on

and her clothes have been reconstructed from some toddlers outfits I found in Oxfam. When they had been washed and hung on the line to dry --- prior to being re-fashioned --- daughter was very curious and concerned; thinking that another sibling might be in the offing

I shall return in due course but for now I must away. In five minutes time my two charges will be back from their first day back for nearly two weeks -- a traumatic event and worthy of a drink and biscuits.Time for me to clamber back on the merry-go-round

Frida Boccara - Un Jour, Un Enfant

Following my present infatuation with this lady's voice I came across this:
Frida singing France's entry for the 1969 Eurovision Song Contest.
With the latest Contest (should I say fiasco !) over last night, it seems timely to remind ourselves that, for all its faults, the Contest has resulted in some great popular songs like this one.
Having said that, there was always controversy and farce: this song came first place but tied with UK (Lulu's Boom bang-a-bl**dy-bang) and the Spanish and Dutch entries

The words to this song are sentimental but if you're in that frame of mind, they are rather sweet and somehow very french:

Un jour, un enfant
Un jour se lèvera sur trois branches de lilas
Qu'un enfant regardera comme un livre d'images
Le monde autour de lui sera vide, et c'est ainsi
Qu'il inventera la vie à sa première page page

En dessinant la forme d'une orange
Il donnera au ciel son premier soleil
En dessinant l'oiseau, il inventera la fleur
En cherchant le bruit de l'eau, il entendra le cri du cœur

En dessinant les branches d'une étoile
Il trouvera, l'enfant, le chemin des grands
Des grands qui ont gardé un regard émerveillé
Pour les fruits de chaque jour et pour les roses de l'amour

My rather rough 'liberal' translation:

A day will dawn upon three branches of lilac
When a child will watch, like a picture book,
The world around him that is empty, and it will be like this:
he'll invent life on his first page

Drawing the shape of an orange
He'll give the sky its first sun
Drawing the bird, he'll invent the flower
Searching for the sound of water, he'll hear the heartfelt cry

Drawing the rays of a star
The child will find the way of grown-ups;
Grown-ups who have kept their sense of wonder
For the everyday --- like fruit
and for the roses of love


Ahhhhhhhh ;-)

Frida Boccara: Cent Mille Chansons

I've just discovered this french singer who I never knew about before. Sadly she died aged 56 in 1996 but I just love her voice. I love this song too: an adaption of an aria form Bach's Matthews Passion. It was adapated for a film in 1962.

Just wanted to share it with you. I think it's sublime but then I adore Bach and love french singers.

Must Try Harder

This post is written at the start of M.E./CFS Awareness Week

I must thank Rachel for designing the logo in the sidebar and for the suggestion that people with M.E. who blog should write a specific post about the condition.
Go over to Rachels to see what she has written and also to Signs who has a special anniversary

Recently another ME magazine plopped through the door . I picked it up and leafed through the articles. I find, increasingly, that, where, once I found these periodicals enlightening, informing, confirming I now find them uninteresting, infuriating or irrelevant.

Why the change?

Well most of these mags are delivered because they come as part of the package when you join the various organisations that purport to support people with ME --- and they do support them and they have been and can be useful.

They’ve helped me understand more about my condition and helped me come to terms with how I am. They’ve helped me connect with other sufferers and made me feel I am not alone but part of some tenuous community.

The only thing is:

I don’t want to be part of a community or club of people with ME.
I want to be ‘me’ not ‘M.E.’

…and there’s the rub because it seems I cannot have one without the other and that plop on the doormat heralds a dilemma.

Shall I pick up the latest mag, which reminds me (as if I needed reminding!) that I have a chronic illness or should I shun that periodical and pretend it’s nothing to do with me?

One of the hardest things about having a chronic illness that hinders everyday activity and thought is trying to maintain a sense of self outside the label of the condition. In some ways having a virtually invisible malady is helpful in this regard for I am not party to the pat on the head for being a brave little soldier or pitied because it is obvious I cannot see/hear/talk or whatever it is. I don’t have the external battle with people I meet to declare myself as ‘me’ as loudly as possible before they notice any signs of impairment or disability. On the other hand people make assumptions; they assume that the seemingly well person before them is well and have no knowing of the difficulties I experience.

Worse still I sometimes look at myself in the mirror (as seldom as possible) and my reflection tricks my own self. Subconsciously that reflection that’s standing there says back to me:

‘Well go on then get on with it; get on with life. You look OK. Stop fooling yourself. That was a good day yesterday. I bet you could go back to work part time. I bet you could make more art. I bet you could travel further, go out more, get to the dentist, drive further, do a College course if you just tried harder….’

and there’s the other rub…

the ‘TRY HARDER’ voice,

the voice that hangs round with its chums called ‘SHOULD’ and ‘OUGHT’

…. and that’s why those magazines can be so unsettling because every month or so another one plops on that doormat and inside are all the articles about people who have:
tried harder,

found faith,

tried Vit C,

Vit D,

magnesium,

calcium,

ENADHA,

the Lightening Process,

the Perrin technique,

the Gupta Treatment,

CBT,

EFT,

Reiki,

bathing in goats urine and drinking their own (joke!)

and they all miraculously got better:

better than me, tried harder than me

Obviously.

Over the past 8 years I’ve tried endless pills, potions, treatments. Like many, many people with ME I have spent a lot of money on treatments that might help in a desperate fight to get better and all this to try and regain some normality but also to be seen to be trying harder and doing my best. I cannot give up because I owe it to myself and those around me to try to get better but sometimes the stress and pressure of trying only exacerbates the lethargy of the illness itself and I don’t want to try.

What I really want is to be left alone

--- to leave myself alone ---

to try and sort out a way to develop a new productive life that reflects who I am and my capabilities as they are now.

Given that they are a limited version of my old capabilities this means that in the scheme of things my efforts are fairly paltry in a world where we are encouraged to achieve, self-help, don’t stop, progress.

All I can hope for realistically is to come to a day when I can look in the mirror and not see a body that says

‘Stop kidding, try harder’ but says ‘Look deeper, just be.’

The Who - Substitute (1966)

Substitute

Today is Blogging Against Disablement Day: an idea dreamed up by dear Goldfish a few years back. This will be the first time I have contributed a piece. Let me say before you read it that all I wanted to explore was my attitude to disablement as it applies to me and my experience. I have been blunt and have used terms which I would usually never use. I am using terms others might use to describe disability or their ideas about it and their prejudices. In the end disabled people are often seen as 'other' --- in 'another room', belonging almost to another species. We are in fact all people with our own gifts, prejudices, insights and humour. What I have learned and know in my heart after 51 years here is that everyone has something to offer someone esle. I have worked with old and young, sighted and visually impaired, intellectually gifted and intellectually challenged, hearing and deaf, supposedly sane and supposedly unsane, able-bodied and disabled-bodied people --- and the most important word in that line is PEOPLE.

Speech over......on with the motley


The person who stands (well ---usually sits or lies) before you today is hewn from a rich mine of disablement experience. As a child my father was Head of a Special school and I would often go to school with him; playing happily with all the children and never really noticing or questioning any disability they may have.

Once I started school myself I was volunteering to work on projects with disabled people and after I left school I went on to work in Special schools, Day Centres, clubs and projects for people with mental health problems, dementia, older people, arts projects with a whole range of people. I worked in those dreadful ‘hospitals’ where the ‘mental defectives’ had been dumped all through the 20th century and before. I witnessed first hand the last vestiges of that cruel and despicable system and then witnessed the birth of the new system --- supposedly better and more enlightened but, in fact, just as blinkered and lacking in individual response to individual needs, without jargon or policies, as the old system.

Still, I loved the work.

I loved the people and the stories and the difficulties that I tried to help others overcome.
I tried to keep away from the upper echelons of the system for it seemed the higher up the ladder the ‘professionals’ climbed the more remote they became from the people they were working for.

And then the disabled world drew a little closer.

My father developed Alzheimer’s.
My partner’s dear mother developed the same disease and I watched her scramble down the same slippery slope.

The work I had been doing with older people with dementia became more personal.

My partner developed, for a time, an eye condition which led to partial sight and then our son was born and he was disabled ….. and with no warning I felt that now I really could claim to know about disability: the shock, the grief of having a disabled child with a syndrome which no one had heard about; a child who had all sorts of problems with sight and mental and physical development and who, it was supposed, would ‘never amount to much’.

The work I had been doing with visually impaired people became more personal.

The work I had been doing with people with learning disabilities became more personal.

At the same time I worked for a charity providing and securing services to disabled people and many of the staff had a variety of physical disabilities and sensory impairments.

I thought I had a fairly good handle on disability: the social model, the medical model, the perspective of the parent of a child who was disabled, the perspective of the child of a parent who was disabled, the carer. All day I worked with disabled people and came home to a disabled son and disabled parents.

I thought I knew disability. In fact I lived all around the edges of disability.

Knowing something and living it are two different experiences.

Seven years ago I became disabled and wasn’t prepared for the personal challenges ahead.
This was no dreadful sudden accident; no sudden disease. This was a slow insidious crawl towards being able to do less and less until my senses, my thought patterns, my sleep patterns, my muscles, my memory, my fine motor skills, my perception, all left me and I was left in bed all day for months barely able to sit up or eat, wash or dress, beae the light or bear the sound of my own children playing.

This was the world of M.E.

And no one took it seriously.
I was’tired’
I was ‘poorly’
I was ‘depressed’
Burnt out

If I complained about certain foods or smells or chemicals making feel worse
I was imagining it,
being hysterical
awkward

Gradually I made some progress.
I could make it downstairs and sit on a sofa for maybe 15 minutes

Now I was on the mend

My former workplace felt justified in phoning to ask questions about projects which had begun to falter without me at the helm. People began to ask how long it would be before I was back. I tried to describe how debilitated I was: that even a conversation on the phone of a few minutes could exhaust me; that I had no idea when I could return to work. Sometimes they called round

‘Oooh you look much better than we expected…’

That was when the penny dropped --- even in my addled brain; even these people I’d worked with for years, who were disabled themselves, could not see that I was as disabled as them. My disability was invisible. There was no sign round my neck that began to tell how little I could do, how impaired my functioning was. I had no badge, blue, orange or otherwise. I had no wheelchair, no cane, no obvious form of assistance or support and I had no obvious difficulty in communicating or understanding.

At best I looked like a ‘normal person’
At worst I seemed tired.
My disability was invisible

My disability was invisible to
My work colleagues
My friends
My relatives
My neighbours
My GP (who smiled politely and made nice noises but offered nothing but anti-depressants and graded exercise ‘til your heart begins to pump’)
and then it turned out it was invisible to the DWP, the NHS, the insurance companies, my pharmacist and almost anyone I came across unless they had M.E. themselves or a close relative with the condition.

And gradually the friends and work colleague lost interest.
I couldn’t join in the work-based debate
I couldn’t join in the gossip
I couldn’t go out and join in

Most painful to me was the fact that, as an artist-at-heart, I could no longer practice my profession. Not only was I unable to physically handle the materials but all ideas had evaporated, all intellectual inner-banter had faded and if I did get a glimpse of an idea as soon as I thought I had sufficient energy to put it into practice the idea and thought processes slipped away.

For this invisible condition there is little assistance.
My GP is next to useless
It seems it is almost impossible to qualify disability related benefits because I have a condition which fluctuates and which doesn’t fit into nice clear boxes on forms. So, 7 years from the onset I remain only ‘incapacitated.’

I cannot qualify for a blue badge though I often struggle to walk even a few yards and waste precious energy driving round to find a parking space near to where I have to go.

Over the last 7 years all I have been offered is a packet of anti-depressants every month
…….. and a grab handle for the bath from a sympathetic OT.

With all my experience of disability, professional and personal I struggled to understand where I came in terms of self-definition.

Was I able-bodied ?

Was I normal but ‘just ill’ ?

Surely if you’re ill you get better or die ?

I have done neither ---- just remained.

Am I disabled ?

Do I have what are seen as the common accoutrements of disability?: a wheelchair, a cane, a hearing aid, a guide dog ?

Do I have obvious communication difficulties ?: slur my words, make ‘inappropriate noises’, self harm ?

Do I need feeding, help with personal care ?

Do I ‘look funny’ ? ‘sound funny’ ?

Do I need a ramp to allow me access to a building ?

A loop system to hear a performance ?

The answer to most of these questions is ‘no’ or ‘sometimes’. Yet it seems that unless I can answer 'yes' to most of them I can never be seen to be disabled and yet I am.

I cannot take my old place in the world. I cannot take a part in normal society (whatever that is). I’m left on the margins because of lack of stamina, lack of an ability to fit into conventional timetables, because you don’t see my brain switch off, my head spin, my gasping reaction to your perfume, the polish on your table, the feeling that my legs will buckle, the sense that I have to lie down NOW.

I look normal. I look able bodied but, in the words of the song, what you see before you is a substitute for who I was.

I am invisible and shut away behind a mask of chronic ill health and closed doors.

I am a person with M.E.

Raking over the coals ( and anything else you can find)

Yesterday:

• fine weather, supposedly sufficient energy to accomplish proposed task
  
• everything ready for blast off
  
• finally The Fates, the weather and Sodding Condition will allow us to offload all our old tat on to various poor suckers in exchange for scheckels

....sorry, I mean the general populace of Mid Suffolk will be able to avail themselves of the rare opportunity to purchase some fine examples of literature, Fine Arts,objects d'arts and haute couture which, hitherto, have adorned and delighted the Cusp Household i.e. we're doing a Boot Sale.

Now, Cusp is not unknown to visit Boot Sales when the weather is fine and curiosity gets the better of lack of real vim. However, this is usually in the role of consumer and so tis a rare day when I can bring myself to get up early, herd children, dog, table, 'float' ( a professional Booter's term for any old loose change that's hanging around) and partner in to the car and make the 6 mile journey to a field where all manner of hoi polloi buy and sell, trade and haggle under the misguided illusion that they are exchanging gems of history or unspoken treasure that appear to be worthless and yet are surely priceless.

If not obvious tat then everything else at a Boot Sale is 'very old', 'rare', 'a bargin'.

I fall under the spell myself. Who doesn't ? In my case I usually fall for the obviously totally broken and worthless but that which has a certain cache and thus bewitches with its charm.

Last time I came home with 6 tarnished brass buttons and a very small china doll with one arm and one leg wearing an expression that looked as though she had just farted.

Yesterday of course was different:we were on the offensive and loaded with items so obviously glorious that we were going to return home with nothing more than empty boxes and a wad of cash.

What I like and can never get over is the range of people Boot Sales attract.

Yesterday saw young and old, black, white, brown, Chinese, Polish, Czech, French, gay, straight, posh, chav, bright, dim, focused, loony, elegant, slovenly etc. etc. There was a woman dressed in black as if for dressage, a woman who had obviously not always been so, a lovely couple who were as camp as a row of tents (and bought something), a sweet Polish family with a little girl who got the better of me so I found myself letting a toy go for £3 when it was easily worth £5.

There was a grown man who haggled over jewellery like a child:

'You gave that other man a discount for that little car. Why won't you give me one
?......'

'Because you're buying jewellery and there's nothing the matter with it and it's
worth a bit. That little truck was well used and had no doors.'

'Can I have this ring for 75p then ? I haven't got anymore '

'Sorry, no'

'How about a £1 then'...says the same man, withdrawing a magical wad of tenners from a grimey pocket. The same man who didn't have anymore to give me than 75p two moments ago

All human life was there and all strolling past our wares. Of course we had a novel trick and attraction because we stuck our dear old dog in the back of the car (estate) on his blanket with his chew and bowl of tea (one sugar) and once 'They' approached to stroke and coo (because everyone does) we'd got 'em in our clutches.

I love the mix of odd sights and sounds. Love the banter and chat. It brings out all my old people skills and the way I can talk to almost anyone --- like I used to at work, when I was a real person; before I was shut in my kennel and offered tidbits by kindly hands like the dog.

The one thing that does get to me, however, is the meanness of some people and the sight of people raking through our old belongings. One woman picked up a brand new child's T shirt that was hand dyed and decorated:

'How much ?'

'75p ? It's new, never been worn'

'I'll give you 20' --- with a sneer

'Sorry' and she throws it down as if it's a rag.

Some items that stroll away with a new owner matter not a jot to me but there are others that are painful to watch as they leave in another's hand: a brooch that was my mother's; a book that my daughter loved (but we can't keep everything, so it's one that was no.6 in her personal charts and we've kept no.'s 1 &2 in the loft)



Still, all in all it was a good day. The dog was patted and petted to within an inch of his doggy life, the children each made about £7 on their stalls ( separate tables to avoid squabbles) and we made £35 profit after we had paid for our pitch ....and we have more space under the stairs.



And, oh yes, I did have a little wander and I did find another 'treasure.'



It's a cardboard box full of bits of old camera. I cannot identify what type of camera, its age or whether the various bits and pieces go together but it cost me £3 (down form £4) and I love it.



Quick...make more room under the stairs.

An uncomfortable realisation

In many ways I'm writing this post for myself rather than anyone else to read. It's an aide memoire to self about how ill I can be.

What I find in this M.E. world is that in the midst of all the symptoms and the coping and the strategies for managing I get myself into a 'nice' little routine where
I do and don't do things,
commit and don't commit to things,
think and don't think things,
expect and don't expect things,
hope and don't hope things
in order to survive and carry on and try to keep up with The Rest.

These various activities and inactivities eventually become second nature. Everything is measured carefully ----
time,
energy, food intake,
food stuffs,
vitamins,
medicines,
noise levels,
light levels,
chemicals,
smells,
cleaning materials,
and on and on
and this regimen is repeated day in and day out until this precarious and 'safe' little routine becomes second nature.

I limit myself without thinking so that,
eventually,
I do not even notice
sometimes
that everyone else is rushing past
whist I creep along.

In this way I keep some kind of grip on a reasonably tolerable existence and I am able to be quite bright and amenable with myself and those around me
and less of a burden.

And then sometimes circumstances dictate that I am shaken out of my cradle.

The bow breaks.

No longer can I maintain my fledgling bird existence, safe in my little feathered nest.
I have to fly with the big birds and keep on flapping my wings lest I fall to the ground.

This weekend past was such a fall from the nest.

Partner was feeling the need to fly the nest for reasons of recreation and change of scenery and, after discussion, it was agreed that a brief sojourn with two friends from Friday afternoon until Sunday afternoon might be manageable for me whilst I stayed behind and cared for our two children on my own.

My children are lovely, bright, and...well children with normal expectations and social lives and by Saturday evening I was on my knees. Many symptoms that have only shown a passing interest lately decided pay a Grande Visite and I have been shocked at how bad I can feel when I try to fly too high and too long.

From time to time I am tempted to apply for DLA. Indeed I did apply about 2 years ago but was turned down. In order to come to terms with the horror of completing the form (which entails a full deconstruction of all the things you cannot do, the places you cannot visit, the ambitions which are dead ends and hence leaves you feeling like the washed up husk you are and there fore thoroughly miserable) I thought that the failure of my application was due evidence of my lack of need.

After all, I manage don't I ?
After all, I am still able to be there for other people, aren't I ?
After all I can still manage to rustle up the odd cake when I feel up to it can't I ?.....even though I cannot cook a full meal from scratch without feeling like death by the time it is ready and time to eat it (the form asks you if you are able to complete such a task).

I can wash and dress myself now....even tie my own shoe laces and I can drive the car.
BUT... who knows about how I only have a bath every few days because every day is too tiring and standingin the shower makes me feel giddy and vulnerable
and who knows there are days when I just bung on any clothes (sometimes over pyjamas) in order to feel and looked 'dressed'
and who knows that quite often when I drive the car 2 miles to town, because I have to go there, that I sometimes, whilst driving, think
'You shouldn't be doing this....you're not really in a fit state'

Me thinks there has been enough ducking and diving, weaving and self-deception and the next time I apply for DLA or have to ask for help, I should remember this past weekend and bear in mind that I need to measure my abilities' --- such as they are -- against other people who are well and fit and not against my own skewed reasons for trying to pretend I am more able than I am ------ damn and blast it ! I've been found out again .....by myself.

The Sun King and stair lifts

My dear blogging chum Seahorse is very chuffed at the mo because she has finally had a stairlift installed. In the process of telling us all about this addition to 'Seahorse Villas' she reveals that she has a model called The Mondrian. The lift is made by a Dutch company and apparently all their models are named after painters: Rembrandt, Van Gogh etc.

Some of her Commenty Pals have suggested that there may be other models too such as the Rubens for the fuller figured, the Picasso which leads somewhere unexpected or the Dali which is made of jelly (thank you Goldfish)



This has sent me of a train of thought for I have always been intrigued by the utterly ridiculous names that manufacturers of everything from nail polish to houses give their products --- presumably in order to give them a certain mystique and seduce us into a purchase. Little do they seem to know that most of us just snigger.



There are other stair lifts of course.

The Lucien Freud is for people with mottled skin and the Beryl Cook is for ladies who like jelly and ice cream on the way up and a sticky bun on the way down (this model to feature a pull out, back lit, tray-ette.)



The Warhol goes up the stair very slowly and falteringly and then finishes at the top with the pop of flash bulbs and recordings of 'oohs ' and 'ahhhs' for 15 minutes.



The Goldsworthy is a more pastoral version with a ring of stones all around and a bijou streamlet with leaves floating down the stairs. It takes ages to construct and the process of installation itself must be documented and published in a large coffee table book.



The Whiteread is fashioned in concrete and is a negative version of the usual stair lift. It goes up when you want to go down and vice versa



The Hirst has accompanying wallpaper for the stairwell featuring half a dead cow and it has small pots if paint underneath so that when it reaches the top of the stairs and spins round furiously you have a unique spin painting on your upper landing



The Magritte is accompanied by a plaque with 'Ceci n’est pas une chaise' and keeps going past the top of the stair into the wild blue yonder



Apparently, the least popular is the Bosch. It takes you into other realms and you find yourself on your upper floor surrounded by terrible demons and flying monsters.



The most practical is the Duchamp because its dual purpose --- you can go upstairs and piss in it



The most popular is the Rigaud. Originally it trailed behind in the popularity stakes because people couldn't place the name but then they cottoned on to the fact that it came with free upgrade whereby you had your stairwell gilded and filled with mirrors and chandeliers and your garden was also 'made over' into a facsimile of the Gardens of Versailles with fountains:

a little 'de trop' pour moi, je pense.

a bientot..............

Marty Feldman-Lightning coach tours

Emerging again....................

Well my dears, what can I say. Its been a long time --- too long ---- and my absence has been as much to do with a kind of mental malaise and topor as much as any physical blight. After Christmas I was full of hope and expectations. I was considering doing the Lightening Process and then....and then...well I just kind of lost hope. The more I looked into the LP the more I knew it wasn't for me and at the same time the wretched insurance stuff raised its very ugly head. Really I just got tired of the fight, tired of trying, tired of the brave face and decided not to try for a little while. I just couldn't be bothered to do anything other than that which I had to and there was plenty of that in any case.

During this phase I watched a very interesting programme about Marty Feldman who I loved in the 60s. Amongst all the smiles and laughter was a little film of a coach trip and the experience of Marty just summed up how I often feel as I reach and grab, stumble and fall in my attempts to keep up with the rest of the world


I don't feel very eloquent at the moment but there are two people who seem to have been feeling similar to myself in past months so I shall point you in their direction:

First there's Marianne who recently wrote a post about the stresses of maintaining a positive outlook whilst juggling family life and chronic illness like M.E. Look here if you want to read more. Marianne has been trying the Perrin Technique --- a kind of osteopathic approach to coping with M.E. She has been writing a diary of her progress and in reading it, something has chimed with my own experience of osteopathy. In the past I have only had treatment when my back has been bad but there has always been a sneaking suspicion that the feeling of lightness and well being after treatment could benefit me in a more general way. To this end I have spoken to my osteopath who is not trained in the Perrin Technique but knows the theory. I trust this man implicitly for his honesty and gentleness and so we have agreed to meet every two weeks for a couple of months to see if osteopathy can help me. I have tried to find a Perrin practitioner but the nearest one is 40 miles away and that trip is impossible for me.

The other person who summed up my feelings of late is Michelle at BehindtheSurface who wrote this very eloquent piece . Just the feeling of struggle and trying and falling and picking your self up is so bloody wearing sometimes that you can't try again for a little while.

And now the Spring really is beginning to arrive. I sit here with the windows open and the sun shining and birds singing. No matter how I feel in a general way, who couldn;t be moved towards hope and a more positive outlook on such a lovely day.

HAPPY EASTER

Big Feet

Hasn't this little girl got big feet ?

FOR VALENTINE'S DAY

Oh the things that happen in the name of love............

Time - He's Waiting in the Wings

Time - He's waiting in the Wings: one of my favourite Bowie songs when I was just a little Glam Rocker with my platforms and satin jacket......and now he seems to be lurking and hovering in the wings and afraid to do his part.

Time in my head is kind of linked to energy. As I 've said before, I'm sure I've suffered from the bastard illness almost ever since I was a little Glammer in my own eye. I've had periods with no energy; periods with more energy and some periods when I had strange bursts of energy that seemed short lived and urgent like a sparkler fizzing towards the end of the wire: I had to be busy and get everything done before the energy disappeared up my own Roman Candle in a puff of smoke.

One of the things that seems to have changed in the last seven years since I became an official PWME is that time is all askew. My relationship with and experience of time and space no longer seems in sync with other peoples'. At the start, this was because my sleep patterns were so awry that I slept in the day, woke at night, crawled back at 3a.m. and woke at 11 a.m. or 1 p.m. I still have periods when my sleeping is askew but mainly they are just that --- periods, phases.
However, what I cannot seem to get used to ---- even after all this time ---is that everything takes longer.

My energy levels mean that I'm slower. My confusion and memory lapses mean I often have to do the smallest things several times over before they are right because I forgot where I was, where I put something, what I was thinking. My concentration means that I'm easily distracted or sent off in another direction. And then, even when I seem to have grasped the nettle and I'm finally on track, I get tired again so it's time for bye-byes and a nap.

The 'nap' might be 1 hour, 2 hours, 3 hours and that’s a big chunk of the day when it takes you nearly an hour to wash up the breakfast things and the children are home again by 3.30 or you have to be out at 2.45 to collect them.

I think that, apart from all the other numpty howdedos of the last few weeks, that is why I have become so tired and frustrated since Xmas: I had all sorts of things kind of planned, that I wanted to do and thought 'Yes, by the second week of January, I 'll have done 'x' and then I can do 'y' and that’ll lead to 'z'. That's how it was when I was at work. I was organised, methodical had a plan and stuck to it. There were always plenty of irons on the fire, pots on the stove, plates spinning (probably part of my downfall !) and now the irons stay in the bloody fire til they melt, the pots boil over and scald the hob and the plates wobble and topple and smash and I still cannot get the idea that it is all possible but that it just takes longer.

I will get there in the end but sometimes 'the pretty way' doesn't seem all that picturesque.

As a P.S. to the last post about the Arts Council's failure to support Disability Arts: there is now a Yahoo Group; Disability Arts Defence to campaign about the cuts and the erosion of the Disability Arts Movement

A little something to get off my chest

Now every now and then the Numpty Brain seems to reconnect itself to a long-gone era when I was relatively (you are talking about Cusp here) sensible, had a job with work-related responsibiliteis and cared deeply about the people I worked with and for i.e. disabled and 'excluded people'.

You may remember, if you've been here before, that I used to develop and co-ordinate Arts opportunities. Ironically, of course, I am now disabled myself in many ways and feel just as excluded from opportuntites as any of the people I used to work with, so my views about access to arts opportunties for anyone who is marginalised in society have not only persisted but intensified.

Last week ACE (Arts Council of England) released its decision about who will receive regular funding from 2008-2011[ here ] ...... and who will not[ here]. Who will not seems to include a variety of arts organisations that support and encourage the development of arts opportunities for people who rarely if ever come into conatct with the Arts or are encouarged to connect with their creativity. The organisations who will receive regular funding tend to be the big, showy prestigous organisations and it is part of ACE's strategy '.... to shape and support an arts sector committed to delivering excellent art to the widest range of people, and one empowered to take artistic risk...'

The Arts Council's Chair Christopher Frayling said:


'The arts organisations we’re funding will place the (Eastern) region on the international map for its world-class arts offer, and these include the network of outstanding cultural venues that wil open their doors over the next 18 months at locations throughout the East of England. As well as giving our communities access to high quality art, they will make a significant contribution to the regional economy through increased visitor numbers and additional inward investment.'


Giving communities 'access to high quality art' is all very well but generally that often means access as in
visiting,
watching,
listening,
looking at

rather than

thinking,
doing,
making,
feeling,
making sense of one's own existence in a community, society and culture.

If you look at the organisations which will no longer receive funding they are often those whose very raison d'etre was to encourage participation..... That may have meant being involved with individual Community Artists with wonderful people skills or large Company's who offer workshops but it still meant that young people, disabled people, older people, people in prison, people with mental health probelms and on and on had the chance to actually directly connect with art, professinal artists and their own creative spirit.

Give 'em their due; ACE apppears to recognise the importance of the Arts in people's lives. In a debate that ran through 2006-7 they concluded that:

• The arts are seen as part of our fundamental capacity for life
• The arts enrich our experience of life
• The arts offer powerful applications in other contexts

and yet they have pulled the plug on funding of all sorts of organisation whic directly promote those tenets

The Department for Culture, Media and Sport supposedly supports disability arts too and yet what really seems to have happend here is that ACE have happily dumped their own conclusions and withdrawn funding from Communty Music, Community Writing, Arts and Health etc. and nobody cares because it isn't 'sexy', it isn't 'seen' or sufficiently visible and it doesn't, therefore, apparently matter. What does matter is making it glaringly obvious that the money has been spent in a very obvious and loud way and where there was doubt about withdrawing funds, enough Big Names have enusred that ACE sees the error of its ways. The ordinary people don't have Big Names to speak up for them so they can languish at home.

What really saddens me is that, before I was ill, the stuff that ACE seems to be throwing out and abandoning was my passion. I worked so hard to try and ensure that as many people in this region had the opportuntity to see, feel, touch, smell and taste all sorts of Arts opportunities. Blind children worked with internationally accalimed orchestras; old blind ladies worked with rock musicians; people with mental health problems worked with poets, artists, writers; deaf people worked with textile artists, dancers; the elders in the Carribean community worked with each other and the young people and film makers and Desmond Dekker's backing band (!),; people with dementia foudna way to connect however briefly. We worked and connected as a community. Yes, we did work with big Companies (it wasn't about a narrow very local vision) to make the rpocess work as well as it could the process needed a Community Arts organisiation with local contacts, expertise in community development, passion for bringing national and international focused organisations to a rural and particular Community through people with local knowledge. Even within a County like ours, there are differences in araes of that County and nobody can know that unless they live and work here and their whole business is about accessing, interpreting and enabling those local people.

The organisation that I ran stil exists but in a different form --more narrow, more befitting a 2008 vision, and, as I see it more hobbled (have to be careful here because I still respect the people who run it). The point is that for those Community Arts organisations that DO still exist, their ability to exist will be all the more precarious, their vision more hindered and their standing within the Arts world will be all the more diminished because they aren't showy, aren't 'out there', aren't 'prestigious'. That's not the point of their existence.

In the Community Arts world one of the basic prinicples is that what matters is

'the process not the product'

and that's never going to be good enough for the Arty Charlies in London....damn them.

Slow progress, Sabian and Splod

Well, It's beginning to feel like the storm may be ending. I'm feeling a bit more like myself and I have a new dose of herbal tinctures on their way to promote robust health, vim and vigour (ha, bloody ha).

The scabby chicken is growing back her feathers and the dog, who nearly popped his clogs earlier in the week, is sitting up and taking notice of a lightly boiled egg thanks to medical intervention and over £300 of veterinary fees. The Credit Card company are still bastards and I'm still very muddly but shall never make the petrol/diesel mistake again (hopefully) now that I have taped a huge yellow sticker inside the fuel cap which says (DIESEL NUMPTY !) in big black letters. The insurance company are also still bastards and trying and trying to get me to see some other trick-cyclist but I am not being persuaded to don any trick-cycling-clips for the time being so they can go and rot until I have prepared another diversionary tactic.

NOW, dear Reader, despite the upties and downties of the past few weeks your very own Cusp hath not been idle for I have been busy with needle and thread and sock and crafting more Sockee Monkee. One of them was before Xmas and commissioned by a glamorous young woman in the most select environs of the Scottish capital.

This Sockee monkee is an alien monkee who has beamed down from another sphere. His name is Splod and he comes in peace and is in need of succour and shelter until he can return whence he came.

As he has found a home with two delightful children near Scotland he shall no doubt be introducing his fellow aliens to haggis and a wee dram in the future (it'll be a long, long, long time in Earth years since one Splod year equals one Earth century so the dear children will have him to stay for as long as they want....or longer if Splod likes them: you do all know that Sockee Monkee never know when to leave or shut up, don't you? Honestly, you could put on your 'jamas, switch off all the lights and be half way up the stairs to bed before some Sockee Monkee would even notice you were gone, as they natterchattered away)

More recently another child who lives mid way between here and there was heard to cry

'...and what about me.....Where's my Sockee Monkee ?'

and so, after the Festivities, out I went straightway, hotfoot back into the shed to create another little Sockee chum to join the throng.

His name is Sabian and he's a Skater Dude

--'grind those rails, bro....'

In truth he's a little wayward but basically he's a good kid and needs someone to show him the right way. I knew just the fellow and his Mum. They are very, very nice people and know how to make very nice jam so I feel quite sure that Sabian's new housemates will provide the sort of stability and conserves that he needs and that they'll all complement each other wonderfully.

If you meet these good people, please don't tell them about Sabian's midnight forays into the fruit bowl, will you? When he was here we came down one morning to find banana skins all over the kitchen floor and wheelie marks on the lino. I had to make him promsie he'd never do that again before I sent him off to his new home.

(If there are any spelling misatkes here please forgive me. My brain is still Numpty and Bloggers spellchecker will not work ~~~ that's my excuse anyway ;-))

WARNING: A long and exasperated rant about why 2008 is not turning out as I would hope and why petrol pumps should be Numpty Proof

Here we all are then --- mid January already and I 'm still recuperating from the Christmas holidays and trying to catch up on stuff. I must admit that I had positive thoughts for 2008 but so far life seems to be getting in the way and I am longing for a bit of peace without some demand being made on me.; the kids have been ill, the dog's been sick, one of the chickens has been mauled by the others and taken up residence in the utility room, I've had a tummy bug and everyone wants a piece of me. A part of me longs to move away to the nearby seaside and to a bigger house which we've seen and can afford but everyone elses' life here is settled and happy --- happy at school, happy at work, happy with nearby friends, so we stay and I am sat sitting here (as Hilda Baker would've said) looking at the same scenery.

Quite apart from all this, the old sleeping is not good. Last night I found myself sitting watching a dreadful word quiz on TV at 2.30 a.m. I utterly detest this sort of T.V.but I was so brain dead that all I could do was slob on the sofa with me eyes trained on an idiot, leering and gurning and encouraging me to phone in with an answer which would give me the chance to win £30,000.

To be honest I could do with the money.

Yesterday I was sitting here with daughter (who was also supposedly off school with a tummy bug) and the phone rang. Twas one of my credit card companies.

Now, dear reader, sickening though it is to some, being a Cancerian I am 'careful with money' (no I'm NOT tight, just careful) and so I always pay off the balance on my statements ---except this once on this particular card. I forgot to pay even the minimum balance because it was due on my son's birthday and my mind was numb with Xmas yet desperately trying to cling on to all the things we had to do for 'The Celebration' (which went very, very well actually).

Once the children were back at school I went through the paperwork which accumulates during holiday time and lo and behold discovered my error. I wasn't bothered. I knew I'd incur a late payment charge but it wouldn't be much since the total balance was only just over £65. Apparently the likes of credit card companies do not feel the same about such a paltry sum for as I was sat sitting the telephone rings and the lilting tones of an Indian maiden strive to reach me through a crackle of static and fizz.

Did I know I hadn't paid my minimum payment ? Yes

Why? I forgot.

Was I going to pay it RIGHT NOW ?

Yes O.K.

To cut a long story short I was harangued for the sake of £65 and threatened with all sorts, short of said maiden flying over and giving me a Bombay chinning. Not only that but, having paid up, two hours later a colleague of Miss Bombay Credit Card 2008 phoned and attempted to engage me in the same rigmarole....and then a letter arrived this morning reiterating all the same guff.

Gott in Himmel ! What is the matter with the world? Everything is automated and every computer spews out a nasty missive as soon as the scheckals don't immediately mount up. There's no humanity in all this. What if I 'd just been bereaved ? What if I'd forgotten because I'd just been told I was terminally ill ?

Karma is not on my side. Today, blurry from lack of sleep, struggling with a dodgy tum I determined to go out and buy two items of shopping before returning hot foot to go back to bed. Twas not to be. 'Must fill up the car with petrol' I thought '...don't want to be stranded at home with no petrol' (nearest petrol station is 4 miles away). Filled up, drove to shop, accomplished task and heigh ho, off home we go....except we don't because what has Numpty Head done? Numpty Head has put petrol in the new diesel car and the car won't start and numpty has to sit in the car waiting for an hour and a half for a trailer which takes car and Numpty to a garage 25 miles away to be flushed out and replenished with the right fuel. Numpty Head is £200 down on the old bank account.

Numpty is not pleased with self or world and wishes 2008 would get itself in gear and let me get on with what life I have left.

Not an auspicious start to 2008 or the first proper post of the year, I'm afraid. Maybe I should just go back to bed and wait for the clouds to roll by.....................

Wake up Cat

At least I CAN still rest --- unlike this poor blighter !

Horrid puss !

Resting

Free Chrissy Pressy from dear Dr Speedy. Beat the Rush !

Right my little blogging chums. Here's a very jolly freebie for next year, created and provided by our dear friend Dr Speedy who has given us all a Chrissy pressie by providing a download of a great 2008 ME Calendar with splendid artwork and chuckles.

Go on. You know you want one.

You're worth it................and now for the 'science bit': the calendar also blows all the myths about CBT and GET, so you're amused and educated all in one every month.

Bargain !

Get yourself over there now before they all run out ;-))

Click here for link

Merry Christmas and Happy New Year

Merry Christmas and a Happy New Year:

time for new beginnings and healing of old wounds

Thank you for all the support you have shown

and all the fun and laughter you have brought here

during 2007

Love Cusp xxx

Now it can be told

One of the reasons I've been a little tardy in writing post and responding to comments in that I've been busy making more sockee monkee. They was commissioned !! Yes...other people actually wanted them ! ;-))

Anyway, I do like making them and thinking up all the biogs that go wit them and it's lovely sitting in my everso 'umble abode thinking about the monkeys sitting about in other people's abodes all over the place.

This time it was DJ Kirby who asked me to make two: one for one of her sons and one for her niece. She was specific about colours the children liked but left the rest to me. For all sorts of reasons it seemed best to make cuddly soft monkeys so I used a different kind if sock and, because they are for children I felt I couldn't use buttons for eyes as I usually do so I had to find another way.

The soft towelling socks proved to be a bit tricky to work with but I think it was OK in the end and thus Chutney and Pickles came to life.

Chutney thinks he's really hard and sports a mohican a sparkly earring and is poking his tongue out. In actual fact he's a real softie and needs someone to look out for him. DJ's niece is just the girl for the job . I don't know if she likes 'Hollyoaks' but if she doesn't it'll be tough because it's Chutney's fave and she'll hog the remote when it's on TV

Pickle's a lot smaller and younger. He's pink and green stripes with a sort of mask over his eyes and number 8 on his back: DJ's son's favourite number. They both loves trains and Pickle likes to eat Jammie Dodgers. Mind you he is a bit grubby and doesn't like washing very much ---that's why he has flowers growing out of his tummy button

Best Blogging Buddies Awards

Right. Now I've done a bit more wrapping of presents, written another letter to the Insurance Company and been to another school Xmas concert I can get on with the next important thing --- listing my seven recipients for Best Blogging Buddies

1 Seahorse for her positive and beautiful blog and for the way she never fails to keep in touch

2 Amanda for her informative blog that keeps me going in an arty direction and leads me to arty places I didn't know about and because she also keeps in touch and is very supportive

3 To Maggie, who despite having had a really tough year and her own health problems, maintains and bright and cheery blog and has been supporting my blog since it's earliest days in 2005

4 To Azirca who has beautiful photographs, collages and artworks and is always supportive of my work and ups and downs

5 To NMJ who is a clear thinking, yet quirky literary diva who makes me laugh and brings a strange and enigmatic quality to the world of blog

6 To Pixie who is brave and strong and fallible and never afraid to say so and who always pops over

7 To dear Mr Speedy, who despite being rather poorly manages to maintain a brilliant funny blog about a very serious subject and who is now turning to cartoons to make me roar with laughter about a shared malady

I can't really send you a pressie in real life so this is my virtual yuletide gift to each of you.

Now it's your turn to each make this award to another 7 people

* I would also have made this award to dear Signs who has always supported me in blogdom but she already received one from Kahless and I know she's not greedy so she won't want two

David, Goliath, the bastards and the saviours

Dear NMJ has alerted her readers to a very interesting post by Caroline at INSEARCHOFADAM about bullying.

In all honesty, life at the moment is a real curate's egg --- good in parts. On the one hand I have the children who are all excited about Christmas and the joy of buying their presents and anticipating their faces in a few days time when they open them. I have the luck that two people have ordered sock monkeys which I enjoy making when I have the energy and I feel blessed and rather honoured to think that people who have seen my strange creations on this blog should want to own one for themselves. It's busy as ever at Christmas but it's all good.

On the other hand there is a lot going on in my head about 'the illness' --- the bloody illness from which you can never escape.

Now, at the moment, the way I feel generally is not terrible...it's just my usual state with the odd bit of nausea, headache, tiredness etc. thrown in: the gay abandon and pick 'n mix, selection box symptoms in the day of a life of PWME....but..... what's really getting to me is this bloody insurance business and the constant nagging pressure of being coerced into seeing a psychiatrist when I don't want to, don't agree with all the nonsense that the Insurance people spew out about my need to see him and all the phone calls, emails and letters that go into fighting Goliath. It's there all the time and it's beginning to drain me.

Reading Caroline's post last night signalled to me what this nagging feeling is all about and why it drains me so much: I feel I'm being bullied. I am being bullied. And though it's something I rarely talk about

because I'm 51,

because I have responsibilities,

because I have better things to do,

better things to think and talk about,

because it's in the past,

because I should be OVER IT BY NOW

is that I spent the whole of my secondary education being bullied and the feeling has never really gone away.

I can identify with everything Caroline says about the echoes of the past always ringing in your ears somewhere. There is always a part of me that is on the alert, waiting to be ambushed, waiting to be abused, denigrated, humiliated. I never really think what I've done is good enough, never really believe the good things will last. I do now feel I deserve the good things when they come ---- and it took me years to come round to that, but I still don't trust them just as I have taken years to trust people in RL.

Caroline is pleased she has achieved the goals she reached out for so as to prove her bullies wrong. NMJ, who was not bullied but who witnessed her kid brother being bullied, would like to form a Society for Kicking in the Heads of Bullies.

Me, I'm past wanting to kick in their heads. It's all too long ago. Part of me has given up the fight and just wishes it had all never happened, wish I could still talk to the other person who was bullied with me....the only person who really knew what it was all about. But that's too late too: that person was dead of a heart attack at 39, three weeks before our 40th birthdays --we were born one day apart.

The insurance fiasco is just another reminder of my past; the past I am always trying to escape but never will. I wonder if those bullies have any idea or any memory now of what they did. Do they realise how much their taunts still linger? When I see one of them on TV telling me about whether it will rain tomorrow or the sun will shine does he imagine me watching him and feeling a glimmer of hatred as the old film projects it's frames onto the back of my retina and I feel the fear and anger all over again. Bet not.

*******************************************

And then, on the other hand, there is light in this darkness ----- for who should come forth with a candle, bidding it to shine with a pure clear light but my blogging chum Kahless who awards me with a Best Blogging Buddies Award.

Couldn't have come at a better time, my dear. Thank you once again. Gives me real faith that there is still kindness in the world and strength to carry on fighting

David & Goliath

Not many posts of late. Too much going on. On the one hand I'm still being hassled by the Insurance company about my claim. They still insist I see a psychiatrist ---as is usually the case when they want to try and prove that someone with M.E. has mental health problems such as depression so that they can then say the condition is treatable and so it is possible to eventually return to work. I know I'm not depressed (though there's no shame in being so) and my Consultant has said I'm not. Even so the insurance company want to play this game of Cat & Mouse their way in order to win. Ill or not I'm a fighter and even though it's really beginning to get me down I'll not give in without a fight.

On a more positive note, I have had 3 orders to Sockeemunkee for Xmas presents (one is from that eminent 'Vedette Blogeuse' and renowned author NMJ) so at least I have something positive and jolly to bolster me up in the dark winter days and the pressure of being a little David in the face of Goliath.

PAPER CHAINS

We've been making paper chains from old magazines.

Hold on to your hats.............Christmas is nigh !!!!!!!!!!!!!!!!