Done and dusted. Onward and upward

Well Mohammed has been to the mountain and returned from whence he came. Two and a half hours of going through every tiny detail of my life from when I was 3.....50 odd years; scraping about under my carapace until I feel like a crab shell in the dustbin of seafood store. Hope he got what he wanted and, no doubt, though he was a very nice fellow he will now go back and write what he would have written even if he'd never met me face to face i.e. that if I just have the right sort of CBT and the right sort of GET then I can be reinvigorated ready to resume my career and pay my own bloody pension premiums. We shall see. Thankfully there are some trick-cyclists who recognise that M.E. is not a psychiatric disorder, or depression or all about fatigue and I thank Dr Speedy and good old Nasim for pointing me in the direction of this psychiatric sage. Trouble is she (the sage trickie) is in Canada and that's a bl**dy long way for someone with M.E. who finds it mega hard to even get to Ipswich U.K. Never mind. All part Of life's rich tapestry....cliche, cliche, cliche.............

On a much lighter and more positive note I would also direct your esteemed attention to a very uplifting project. The lovely Kirrily Anderson in (I think,) Australia has brought together a whole bunch of creative types who also happen to have M.E. and gathered their work into a very well-produced online magazine/book. Take a look at Creativeforasecond and you can download a free copy for browsing or buy a hard copy. Great positive stuff and more of what we PWME need.

Past Present Future

Well what can I say ? It's been a long time and, in the small way of a life with M.E., quite a lot has happened.
There were trips out and visits from relatives during the school hols and at the end a lovely short break right by the seaside. I know how much the seaside means to me but it wasn't until we were finally there that I realised just how much I'd missed the sounds and smells and sights of the shoreline.
Now we're back to the routine of school and work and domestic duties and the holiday is a lovely memory. I feel slightly different and more in tune because during my break away from you all I was also coming off the low dose of SSRI I have been taking for the last 7 years. Such drugs are often presctribed for PWME and, initially, during the shock of becoming so ill and losing so much they were useful. Over the last 3 years I've pleaded with my GP to support me in coming off --- but to no avai. Finally I asserted myself and spent the summer holidays gradually tapering the dose. Now I'm finally free of the chemicals and life is more real -- the good, the bad, the ups and downs but I feel more connected.
Next week I have the visit from the Insurance psychiatrist to assess whether or not I am geniuinely physically unwell and unable to work or whether I have a condition that could be turned around by CBT and Graded Exercise so I can return to work and pay my own pension premiuims. Mmmmmm.....wonder what he'll decide ? Answers on a postcard please.
I bet I know already. Sadly I have to go through this charade or they've threatened to leave me with no pension at all and cut me off.
Lastly, the summer was made more enjoyable by the publication of Nasim Jaffry's book 'The State of Me' A brilliant read that can only do good in terms of letting to worold know how it os to live with M.E. but in the most charming, involving and humorous way possible.

There will be a short intermission

...and lets hope this video IS still available. Like I said, can't get the staff !

There will be a short intermission

Normal broadcasts will resume in September

*If you visited here recntly and saw 8 similar posts it is because YouTube and Blogger have had some serious issues for the past week: no transfer at all and then they transfer eight videos all at once. Can't get the staff !!!!!

Keeping up

So what have I been up to since last we met, you ask ? Lazing in the sun, sipping juleps and Pimms ? No actually. I've been keeping up. In actual fact I have been keeping a secret from you because I have been part of a study made by the MUS (Medically Unexplained Symptoms) Dept. of my local hospital. I shouldn't really tell you more and certainly not show you some of the Report but as it is between us and some of the report is about me, well, .....why not.....just between friends

'Keeping up' is a distinct behavioural mode in the subculture of MEwhirled. This sub strata of Western society and culture is composed of a small and ill defined group of women, men and children who suffer with a condition whereby they can see a world (what we usually call 'normal life' or the 'primary world') moving in front of them and have a desperate desire to join in but who also feel that they are moving within a different time frame with a different set of rules. They feel that they are moving at a slower pace than the primary aworld and are unusually plagued with guilt, mood swings and a need to placate and please those in the primary world.

The behaviour known as 'keeping up' shows them enmeshed within a particular set of fine and gross motor movements which induce aches, muscle weakness and, occasionally a very nasty headache. They are, in effect, making feeble attempts to match the pace of those movements and tasks seen in the primary world (a futile exercise ). In doing so, they feel that they are being whirled round on an ever-faster carousel --- the primary world --- which rushes past as they try to keep up. This whirling effect has given rise to the aforementioned term 'MEWhirled'.

Such intense behaviour can lead to subjects exhibiting a certain irritability as their futile behaviour continues and frustrates them. Their large intestine and bowels may manifest this general irritable demeanour through constipation, diarrhoea, vomiting, flatulence and an intolerance to certain foods --especially the really nice foods such as bread, cakes, chocolate and alcohol.

In recent studies it has been shown that 'keeping up' is particularly common in people with ME who are parents and carers of young children. It also seems to reach a peak at particular times of year -- especially within the hottest summer months and the Xmas period. These two peaks may overlap and this has led experts to posit the theory that 'keeping up' is linked to full-time parental responsibility during school holidays. In particular, the full time responsibility is also linked to a phenomenon experienced by many parents in the general population. This phenomenon is called 'keepingthelittledearsamusedandoutoftroublewiththeminimumoffussandargumanets.'

So you see I have been 'keeping up' and rather than being smething I just do or feel I do it's all legit because now the local MUS Dept has made a study and written a report about it so it must be kosher.

It's not all bad. A lot of it as been enjoyable and fun, if a little tiring.

Since the beginning of last week we have taken part in:

• Sports Day


• Achievement Day: this was 'made' for me by my son playing the recorder for the first time and a little boy in Year 5 who looks a lot younger than his age. He just about managed to sing 'Whistle a Happy Tune' through floods of tears and snot induced by terror at the thougt of singing in front of an audience. 'Whenever gasp I feel sniff afraid, slllurrrrp, gag, snot, I keep my head erect, sniff sniff.... etc)


• End of term school (s) disco (s)


• End of term Youth Club disco


• Buying new sandals


• The local 'French Market'; a jolly and colourful experience but one which leads to a certain sense of disillusionment since many of the articles for sale are wildly overpriced, not french and are served by people who have never crossed La Manche from this side. Still it is tres amusant to see saucisson sec being flogged from a stall in Stowmarket High Street and to hear some of the real french stall holders with their lovely sing-song english. 'Mercimadame'
  
• Making a new skirt for daughter


• Helping son paint old bike and get new saddle so he can flog the old bike and get money for a NOW 70 CD from which he wishes to play Dizzee Rascal at full pelt on the car stereo
  
• Helping daughter make cake


• Going on train to nearest big town (only the second time in 7 years) and then sitting on station platform at nearest big town, spending exorbitant amount on National Express fare (all part of the experience --home made sarnies just don't 'do it'), and watching son drawing trains, taking photos of trains and noting down times of arrival and departure before returning to home town (15 minutes down the line)

• Village fete with dog show where our neighbours' dog won' Dog with the Biggest Grin'. We didn't take Tiffin as it was too hot and he's really struggling in the heat. I also bought 5 foxgloves and 3 heliotropes for £1.40

• Calling ambulance and helping elderly neighbour and who had fallen and broken his hip and whose wife was in real shock. Process took so long and happened at time of day when I would usually be asleep so that, at one point, I thought I might 'flake' and the ambulance would have to accommodate both of us ;0)

Now to you other mortals in the 'primary world', this little list mapping out some of the activites with which we have been involved over 9 days, might not seem a lot. It is just ordinary fodder for the parents of children on school hols .....but for PWME it takes a lot of juggling and patience and organisation and love to get through. It also takes the children a lot of patience, maturity and understanding to have a parent who cannot keep on going ad infinitum without having a 1-2 hour sleep in the middle of the day. My children are such children and I love them all the more for it.

So far we're doing OK and I'm trying my best to rest when I can and grab little bits of 'me time' --- like now.

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

I wish all peoples with children who are on holiday a calm and pleasant few weeks.

May you never argue, lose your list of possible activities and outings (you have got such a list haven't you...Woman's Own has been recommending it since about 1959 I believe), run out of easy recipes for amusement or tea.

May you never be bothered by thunder flies which tickle and irritate and get inside next door's burglar alarm and set it off so that it alarms all and sundry and rings for what seems like eternity.

May you never lose your patience with CBBC's endless, endless, endless repeats of Tracey Beaker, Stupid, Best of Friends or Big Kids.

'It's too nice outside to be sitting in here watching that stuff. It isn't as if you haven't seen it a million times already. Go outside or go and find something more constructive to do please'

Can you tell I used to teach ?

I'd never 'keep up' now

Sunday prayers

Sunday saw us all at the local Smallholders show; a lovely few hours where we could see everyone else's chickens and produce and all manner of other livestock. There were sheep, llamas, turkeys, ducks, big dogs, little dogs, old dogs, puppy dogs and several other whippets for Tiff to sniff.

Owen the big pig sleeping in the sun

The show gets bigger and bigger each year. There were tents with eggs, honey, fruit, vegetables, flowers;

tents with crafts, woodturning, spinning, weaving, leather work, photography, old tools, old machinery.
The highlight for us was, and usually is, the agility show with the dogs. I'm always amazed at how much owners really do come to resemble their dogs ( no exception here either !) and how much the dogs seem to enjoy the fun and games and the tender humiliation of their owners ---- often a very enthusiastic middle aged, middling weighted person lumbering after a lightning speed Collie.

Even the other dogs enjoyed watching the dogs

Now I'm shattered, having been to our village church yesterday for the flower festival. More village life with lovely displays, the organist playing Sati and lots of old ladies shakily pouring milk into rows and rows of teacups, cutting sponges into wedges with the old urn steaming away in the background ---- bliss ! Tea and cake eaten within the shade of a church porch on a sunny afternoon with an old dog waiting for crumbs: he had his own tea on a paper plate too and a good finger full of coffee cake.

Today I shall bake a cake for Tuesday's Achievement Day at son's school and then rest up in the hope that I can make it through that event, Sports Day and then the next six weeks of school holidays

How does that old 60s Aretha song go ?.....'I say a little prayer.....'

Pretty shed

You may remember that my son recently had a shed delivered and assembled by Team Cusp Famille. Now, the shed has been put up alongside the hedge which borders our neighbour and means that, in part of their garden at least, they now see the back of a shed rather than a beautiful vista across the Cusp Estate ;0).

Our neighbours are an older couple. The wife is a wheelchair user so she can only just see across the top of the hedge and rarely gets to go out since her husband had to give up his driving license. We asked them about putting up the shed in case they didn't want to feel more hemmed in (though their garden is enormous and reaches another 100 metres past ours which is also quite big.) There were no objections but I promised that I would paint something on the back of the shed so that when O. comes out to her pond to feed her fish, at least she isn't just looking at 5 feet of black ship lap.

This week the couple have gone on holiday so whilst they've been away I've been nipping out in between the downpours and painting a lovely 'muriel' on the reverse of the shed.

I've always loved all the myths of the Green Man and the shed is situated under the apples trees where there is a blackbird's nest. This has been my inspiration.

I hope our neighbours like what I've painted. We'll have to wait and see

Why I hate pigeons by Cusp aged 51 and 11 months and why crazy people may not be as crazy as you think

For as long as I can remember I have hated pigeons. To me they are worse than rats and the very idea of walking across, e.g. Trafalgar Square, with the nasty disease-ridden vermin flapping about near me, or, worse still, feeding from my hand, fills me with revulsion.

Two days ago, as is the Cuspish way, I retired to the boudoir for the midday nap and left Tiffin snoozing peacefully on the sofa ---as is his way. After some 15 minutes there was an almighty crashing and banging. As I am still in Post-Shed recovery, I roused only a little and passed off the commotion as our slightly unhinged neighbour who is wont to paint his gutters all too frequently (neighbour's obsession # 302) which entails the leaning of ladders and much grunting and huffing.

Amongst his many other obsessions are:

rats;

birds fouling his car;

people who walk too close to the end of his garden;

all cats;

the milkman not leaving his bottles in the 'right place';

pressure-washing his patio;

our chickens;

our children;

next doors children;

hoovering loudly at 7 p.m. on a Sunday

...the list goes on and, funnily enough, one thing on the list as yet unmetioned, is his obsession with wood pigeons which roost in his trees and which he constantly scares away.

Often in the summer, one can be resting or chatting quietly in the garden only to be rudely awakened or wrested from intense conversation by the loudest clapping of hands and shouting from said neighbour in his attempts to scare away said pigeons -- away from his pond, from his patio, from his lawn, from the air and all surrounding space above and beyond his premises.

Anyway......I dismissed the noises which had roused me from my slumbers as yet another neighbourly prank and I drifted back to sleep.

Bangcrashbang ......like the sound of someone rattling a large stick around a box.

'What's that silly old s*d doing now ?'

'Let me go to SLEEP.... don't you KNOW there are people trying to sleep at 1 p.m. here. '

'Surely wanting to sleep in the middle of the day is normal. It is to me you daft old bu**er. Surely a midday nap is not too much to askkkkkkkkkkk......' zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz...........

Bangcrashbang

There's that noise again

'Shut UP !!!!!!!'

zzzzzzzzzzzz....................

Tiffin comes thumpty-thump up the stairs and leaps on the bed, his nose in my face

.......this is serious...

I stagger downstairs, half awake and very, very grumpy. The living room door is ajar and I peer through the gap. All I can see is little bits of black stuff on the carpet

....there's nothing there,

'Daft dog......what's this all about ?'

and as I turn to go back upstairs my eye catches sight of something unusual ..... an eye looking back at me from the far end of the room. Not a human eye, not a canine eye but the blinky, winky, gimlet, glassy eye of a ghastly filthy wood pigeon who is dazed and confused and ......horrid.

The daft bird has fallen down the chimney and has brought with it a fine shower of soot and smuts and has been battering itself against the windows trying to escape. There are sooty wing prints all over the window frames, on the ceiling, against the glass. There is poop up the curtains, on the floor, on the sofa and I am parlayed with disgust. I cannot bear to enter the room and I pray that the bird will not fly through the other end of the living room into the kitchen.

The only way to reach the blessed bird is to walk past it (which I absolutely cannot do) or go out through the front door, round to the back of the house and enter through the back door, right through the kitchen and then into the living room and gingerly open the french doors so he can escape without me having to get too near to him

This is plan A.

Plan A fails. I had locked the back and front doors when I went for my nap and though I can get out of the front door with the key which is still inside, the back door key is also insidethe back door (so I can only reach it by going through the living room and past the offensive creature )and I do not have the spare with me so I cannot unlock it from outside (are you following this ?) viz I'm locked out of the back and have no shoes either.

Plan B must be put into operation:

Plan B: close the living room door, retreat to bed with dog (who is terrified) and wait an hour for partner to return with all keys and no fear of pigeons

Plan B is successful and pigeon is released by partner though even that is acheived with a certain griamce of horror.

We survey the damage ....which is considerable but not nearly as bad as it could have been.

We phone the insurance company who promise to come out the next day (which they did and the whole room is being cleaned ad restored on Monday, thank God)

Moral of the story: Pigeons are vile. Do not assume that all the apparent crazinesses of your crazy neighbour are as crazy as you first thought.

Next time I see a pigeon in MY garden or near my chimney pot I shall be clapping and shouting with my neighbour and louder than him !

Cakes, Fetes, Parents Evening and Sports Day

Here at Maison Cusp we are in the throes of end-of-term/end-of-year school 'jollies': Parents' evening, Achievement evening, Sports Day, End of term Disco, End of Youth Club Disco, Proms, Summer Residentials ....oh the list goes on and on. And you can double all those events because both children have all of them (near as damn it) and their schools are 15 miles apart so that makes for extra fun --- sitting at Sports Day all afternoon and then daughter quickly changing in car so we can drive to son's Achievement Evening for another two hours.

Now, don't get me wrong. I am genuinely interested in what our children have been doing and I love the fact that they are both doing well and are happy at school and their teachers say they have been a pleasure to teach. I'm proud of them and want them to have memories of their parents supporting them and being there and being involved with their schools and I want to know their teachers as much as I can BUT I do so wish that all this didn't have to come all at once. Every year the run up to the summer holidays is a head long rush of activity and later nights with children that are growing increasingly tired too. This is nothing to do with M.E. --well it is too --- but it's the same for all parents of kids at school.

In the meantime, Cusp has been silly. Son was desperate for a shed that he could use as a studio/den/refuge. Finally we relented on the proviso that he helped to assemble it and guess what we were all doing this past weekend ? : erecting a shed..... and it was l hands on deck so I joined in too. I am truly knackered with the screwing, painting etc. etc. and I have woken up feeling as if every bone and muscle is crushed but it was worth it to see his face and see how well he manages to get round his various disabilities to achieve what he wants. We both struggle in our own ways but both soldier on. Of course, being 13 and a half, there are the usual adolescent bumps -- storming off when it won't go right, waking up really late so Parents have done some work on the shed before he's even up but that goes with the territory and it just shows that, learning disability or not, he's the same as any other 13 year old which is great.

Now we have a few weeks grace whilst everything winds down and preparations must begin for the long 6 week break. Will we go away ? Will the M.E. be allowed to get in the way of travel plans and prevent escape ? Is the energy required to go on holiday worth the effort when often I spend a holiday in bed because the journey there has tired me so much ?

Watch this space !!!!!

I love to cry at weddings.......and laugh

Slight change of direction in as much as this is an opportunity to look at other people's creativity
Last weekend our local village church had a 'Scarecrow Wedding' to raise funds. Various parishioners had made scarecrows which filled the church and grounds to enact a wedding.

At the gate a chimney sweep waited to greet visitors and at the porch a photographer was snapping away. The exhibition attendants had dressed appropriately in a lovely 'two piece' as the elderly lady called it and her husband was dressed in his best suit with a rose in his button hole.

The bride and groom waited at the altar


with the Vicar in attendance


and the Best Man to one side

other guests looked on proudly..........



a rather hirsute medallion man

a mother and baby

and her small daughter

Much to everyone's embarrassment Grandma seemed to have already made the most of the champers

The creativity, ingenuity and humour in all this work was lovely. I always enjoy such quintessentially English events. There's a gentleness and civility about the whole thing and they bring together a whole range of ages and aspects of a little community like ours. In addition there was tea and cakes and bric a brac ---- you already know my penchant for a bargain and a little Victorian gold broach, two hardback books and a nearly new Spirograph for daughter all at £1.50 hit the spot and I only had to travel 3 minutes drive away.

What more could you ask for ?

I know the layout of this post is dreadful but Blogger is playing me up endlessly today and I just don't have the enrgy to try and rectify it again: bloody Blogger !!!

Thank you

The response to my last proper post 'When I was an Artist' has amazed me, really. I have to say that I laboured over writing that piece and laboured again over posting it because it seemed so whiny and self indulgent but it seems that I struck a chord particularly amongst those PWME who are especially creative or had jobs within the Arts before becoming ill.

Those of you who have visited here before will know that my struggles to come to terms with the losses I, like many others, have had to face surface on a regular basis. I try and try to sort it all out and try and try not to keep going on about it --- to keep light and thankful for what I do have: God knows it's a lot more than many others. However, last weekend I really did feel as if there was a physically tangible piece of glass between me and 'those artists over there'.

Your response and the outpouring of shared experience is a real salve to me and I really am so grateful for each of you spending time to comment. This is when blogging comes into it's own. That is why, rather than post my response in the comments section, I have decided to make respond in a new post.

Digi wrote powerfully and also mentioned Donimo's reaction when she commented:

'...We lose our continuity, our ideas can evaporate long before they have a chance to come into reality in any meaningful way. I tell myself off for being so effing lazy about making images, and not being prolific enough, and not pursuing my ideas and seeing them through, but as Domino says, perhaps we are unrealistic and demanding of ourselves....'

and Signs say how much my words hurt because she recognises the truth and the sorrow that goes with having to be so bloody brave all the time. I recognize all this and I think it is, maybe, in our nature to strive to maintain or self expression when it is something so dear to us and so integral a part of our whole raison d'etre. For me the lack of continuity is one of the most irksome traits of my present existence. It's as if I am attacked on two sides; on the one by a foggy head that forgets ideas before they are even written down and on the other by a body that so limits my activity that, in completing the necessary tasks of self-care and looking after a home and children, there are insufficient resources left for me to complete anything.

I wonder, in my usual Development Worker/ Rescuer/ Enabler way (the professional and the personal coming together in he usual Cusp-ish manner !), if there is any way in which we can support/enable each other to maintain a creative flow and yet I know deep down that this is probably doomed to failure because we are all like highly tuned, idiosyncratic creatures who have to individually adapt to circumstances in a more extreme sense than other people. I don't see a realistic way in which we could come together to achieve such a goal --- or maybe I'm being defeatist and cowardly.

In any sense and any way I know that we all do our best: fighting the good fight for ourselves, our nearest and dearest and continuing the struggle for some sort of creative output and voice for our inner most feelings and notions.

There are many who now believe the almost populist notion that 'everyone is an artist' Certainly when I was at College that was a commonly spoken idea. Personally I do not believe it to be true. I do believe that everyone is creative (or has the potential to be so) but being an artist is not quite the same thing. I'm not even sure if I am an artist and, certainly I recognise Rachel's struggle to recognise herself as an artist and the desire to move on from her initial exploration of her creative self. In fact I would say that she is an emerging artist and has moved into that realm where everything you see and touch, feel and smell has the potential to be the blur touch-paper for another work. For Rachel and people like her I would point her towards places like the OCA (Open College for the Arts) and artists like Corina Duyn who has M.E. but has used her experience to expand and develop her artistic skills and expression. I know that she took and still takes OCA courses which can be completed at home in ones own time but also have the benefit of one-to-one tuition with some very good tutors.

This last weekend was another marathon --- partner's birthday, partner's birthday party/garden party, town's open gardens/artist studios --which I was determined to visit no matter how hard it was [and it was ! ;-)) ]. Somehow along the way I managed to take some pictures of flowers in our garden --- brief moments when there was time to 'smell the roses'.

I send these images to all of you and wish you well.

A postscript to this post:

RachelCreative got in touch via comments on the previous post to say she has set up a blog ring in order to offer support and encouragement to artists who have a chronic health condition. http://chronicartists.wordpress.com

Elton John - Sun go down on me (Live Rainbow Theatre 1977)

This was supposed to head the last post and there was also supposed to be a link to Marjojo's exhibition(http://manipelt.blogspot.com/2008/05/six-years-work.html) I have now remedied this so take a look at her great work

When I was an artist

Sunday. A glorious June morning. At last the constant rain has ended: the sun is shining, birds singing, cockerel crowing for joy and the old dog is happy to warm his bones in the sunlight streaming through the windows. La Famille Cusp have decided to imbibe a modicum of culture and visit some of the local artists who are taking part in the annual Open Studio scheme.

One artist is a print maker and lives only a 5 minute drive down the road in our village. Another, who paints seascapes, lives in the town. I have been looking forward to this little excursion for a couple of weeks so, despite only 3 hours sleep --- the result of a strange combination of M.E. sleep patterns and the gradual withdrawal of certain medications,--- I determine to 'bloody well go anyway or I'll never do any bloody thing' : this being an indication of the frustration of having the will but not always having the wherewithal to do what I want to do.

All is going well. Daughter is keen. Partner is keen. There are (surprisingly !) no ructions or whines or strops from the adolescent son. I'm settling into this idea. It isn't far and it'll be interesting to see what local artists are up to.

There is then a faint tremor in the air. Methinks that, may hap, it is a little leftover thunder from last night's storm, but no.....for this tremor is not meteorological. It is emotional, psychological; a kind of strange unease and stirring that has been brought about by a perfectly innocent remark by daughter as we sit waiting for the other two to be ready



'When you were an artist, did you ever have an open studio ?'


Thinks:" '....when you were an artist...' this surely implies the past tense i.e. she thinks I used to be an artist but now I'm not. Surely being an artist is a vocation, a calling , an expression of the inner kernel that drives one to create......oh gawd, I'm going all Isadora Duncan and I'll get strangled by my own chiffon scarf if I'm not careful and don't get a grip...'



'Well, sweetheart, actually no. I didn't because they didn't have that scheme when I was still making art


(don't tell her that my stuff wasn't really the kind of stuff you bought --- more issue based and experimental and involved all sorts of strange installations and dressing up. It's Sunday for God's sake --- the supposed Day of Rest and anyway I'm knackered already)


But I am still an artist. I still do creative things
trying to make myself feel a bit better, justify my existence)



'Yes but I mean when were you a real artist ?.....not like now........'
(What you mean now I just sit about and occasionally wash clothes, clean up, iron, make food, sock monkeys, puss cats, Xmas play costumes, etc. etc.)



'Well I was (there goes that past tense again). Yes I was..... I had exhibitions and awards and was on the telly and all sorts....
(Christ I'm really into justification mode now !...pull back a bit Cusp. This isn't an interview for a potential bursary or a meeting with the Arts Council)


And so that conversation draws to a close as the other two members of Cusp Famille descend the grand staircase and let us know that the Staff have our carriage ready that we may go on a jolly 'down the village'

Cusp drives and the others cycle. What a jolly jape ...and sooner than soon we find the house of the printmaker who is busy in his garden studio printmaking. He is working on some lovely woodcuts of wrens and has an array of beautiful work about him and in racks. Some are of local scenes and some are of other places we know and love. He is a tutor at a Printmaking Workshop 25 miles away; somewhere I used to go and print about 20 years ago. At College I loved printmaking and particularly etching and silk screening. I had to give it up because I couldn't deal with the smell of the inks and never found the newer water-based inks as good as the traditional materials.

The artist and I chat. We chat about the Printmaking Workshop. We chat about people we both know: members of the workshop who used to be my tutors on Foundation 30 years hence. I feel that tremor again......

My children have no notion that I know how to do what he's doing. They have no notion that the tutors at College suggested I went on to do an M.A. in printmaking. They have no notion that the business of standing and the business of the inks that are involved in traditional printmaking made it all too difficult for me. They have no notion that I was an artist.

I am happy to see the work and I am happy that both my children love the atmosphere of the studio and the pictures and are asking really pertinent and sensible questions. Daughter wants to have a go when she gets home and is very, very surprised to know that I still have lino cutters, rollers and even a bit of lino tucked away. Son is telling the artist how good he is at graffiti and cartoons. They like the rather bohemian air of the house and ramshackle nature of the artist and the way he is quiet and so absorbed in his 'chip, chip, chip' of wood as he fashions the images of the little wren and the lilting atmospheric music that the artist is playing on his CD

We go to the next studio. Cusp drives and the others cycle. This artist and her studio is a little different. She is much more orthodox and paints nice watercolours and seascapes. Everything is ordered and neat --- unlike the previous studio and any creative space that Cusp has ever inhabited. We all like the pictures and the lady and her cat that sits n the sunshine. The lady talks about how she is doing an M.A. at a nearby Art School and how she has just had an exhibition in Cambridge and is also showing work at our local Health Centre. Daughter makes the connection and realises she has already seen this artist's work at the GP's.



'Have you ever had any work shown at the doctors ?'


'Well no. They didn't have that scheme (either) when I was an artist'



Suddenly I feel that little tremor again and I realise that I've just said 'was'. What am I doing ?


Suddenly I feel as if I am a long long long way from being any part of this artist's world in which I am standing.


It's as if I was never any part of it,

never went to Art School,

was never respected,

won awards,

had exhibitions,

taught,

ran workshops,

was asked advice.



It's as if I am looking through a glass wall at another world where I don't exist.



'The Illness' has divested me of every last sodding shred of my past life so I am now very domesticated --- like a tamed animal --- that bumbles about doing passive, pleasing things ---- and
I am not pleased.
I am not happy
.....but I don't rage of rant because
(a) I am in a public space and
(b) I am with daughter on a nice Sunday morning jaunt in the sunnyshine.

I know that another piece of me has died and, in part, it is my own fault.

The truth is that my wherewithal is so bound up in trying to do the everyday necessities that there is no 'where', 'with' or 'all' left for the artist in me. It's true that I still create stuff --- clothes, cakes, the sockee monkee etc etc --- because they can be done piece-meal and don't take too much intellectual thought
but
the real me,
the real artist me
has suffocated under the weight and under the numbing effects of the Bloody Illness and also the nice little pills that the nice GP gave me 7 years ago when I was very, very poorly and desperate and, if truth be known, in shock when I suddenly could do nothing at all and could not see or hear or talk or digest properly.

That's also one of the reasons that I don't cry and don't rage and, maybe, it's also one of the reasons ---quiet apart from The Bloody Illness -- why my head is in a sludge and in 'NiceLand' where any radical, critical creative engagement seems impossible to reach. This is not to say that the nice pills make everything 'nice'. They don't. They 'iron out the bumps' as the GP put it and may help your digestive problems and your sleep patterns which are totally out of whack. Seven years ago I was grateful for anything to iron out any bumps --anything to help me cope with the physical distress of a failing body. Seven years on I have a sense that I need some bumps to keep me in touch with the world and let me creative spirit fly again.

I don't want to be behind the glass. I want some of what I had. I want to engage with the process. But it's scary. Scary to think I might be able to again and scary to try to withdraw from the pills --- a process, which for some people, is tortuous.

And then, be sheer coincidence I look at dear, brave Marjojo who has been and still is as poorly as the rest of we PWME. She is a real inspiration for she has maintained contact with her genuine creative self and last week she held an exhibition of six years worth of work in her home. I applaud her for her determination, courage and most importantly for the fantastic work she has made --- curious, unique, professional and intriguing.

I pray that in time I will be able to grasp back some of what I've lost and that before the sun goes down my children will know that I am an artist.

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.