Shadows and glimpses

We went away this weekend: the first time I’ve managed to travel that far ( a WHOLE 40 miles !!!) since the summer before last. It was great. Not without its difficulties ….because for someone with chemical sensitivities, staying in any accommodation is risky --- and this time the perfumed washing powder used to wash the duvet covers got to me big time, ---- but, nevertheless, it was lovely to go for some peace away from the builders and the everyday grind.

And today there is more peace because we have a 9 hour power cut in the village for ‘essential maintenance work’ so there is no phone, no heat, no internet. No one using their electric mower, no builders with their radio on all the time and no TV. Even in the countryside it is noisy these days and round these parts, my dearios, many people are retired and at home all day and they are hobbyists --- usually men and usually men who like machines: lawnmowers, tractors, , hedge trimmers, lathes, woodturning etc etc and they all make a noise: and you thought that Cusp Villa was situated in an ocean of solitude and quiet in the Suffolk countryside ----Hah !

Our weekend retreat was near to relatives’ homes. We visited this couple on the way back. One is a musician, the other a textile artist. I have known one of them longer than my own partner…nearly 30 years.

They have two children, like us, and a much more bohemian attitude to life than us: they’re not concerned about a tidy(ish) house, not concerned about set mealtimes. They’re concerned about their art and getting stuff done. The house is unconventional, chaotic and happy. They are not without their own health problems.

I wonder how their lives seem so different to ours.

What is it about me that prevents me from staying with my creativity? What is it that makes me put my all into the children, the house and trying to stay above the waterline with my health ? Why is it that this other couple are still relatively close to who they were 25 or even 30 years ago and I have drifted so far away from who I was all that time ago.

Some of it is sense of self and sense of responsibility.

They are both caring parents and caring individuals who will and have been there for other people in the family when needed…..but they still maintained their identity and their practice. I, on the other hand, have a much lesser sense of self, much lesser confidence in my ability to be creative than them…even though I know this is wrong of me. My identity is bound up in being the rescuer, the helper, the aid. Theirs is bound up in being creative. Their own children call them by their Christian names rather than Mum & Dad. Our children only do so as a joke: I am very much the parent. I am not seen as an artist or anything else other than a parent or as someone who’s not very well. That saddens me.

My sense of responsibility is huge, overwhelming. This may be a legacy of being an only child…and the only child of a parent who was often unwell and another parent who worked with disabled people and spent their life giving and encouraging.

If there is a choice between my creativity and the needs of my children --- even if that need is relatively insignificant (‘….will you help me put on my socks…’) I will go to them and put myself aside.

It is true that having a disabled child puts greater stress on one’s need to be there as a parent (the child who needs help with socks is 15….he can’t bend down that far and socks are difficult to put on at the best of times…never mind zips, buttons etc which are an impossibility) but even so, why do I put everything on hold for them ?

Am I too giving, too saintly [NOT !!! ;o) ] or am I just scared to put myself first and take the leap back to being an individual adult whose creativity matters ? Is helping with socks the easy option ?

In my last post I spoke about living on the cusp, on the edge. That holds still. I do live on the cusp because of my health, but, after that visit this weekend I am beginning to feel that there is something else going on that prevents me from being true to myself.

Maybe it is the natural order of things: that you give as much as possible to children when they are little and incapable of so much and then gradually they learn and become independent and begin to fly the nest, fly further, need you less …..and this point is during a period of adjustment: me adjusting to my children’s’ increasing independence and lack of need for me.

And if that is so, what does that mean for me ? Who am I ? What shall I do ?

When I first became so unwell that I could no longer go to work, there was a part of me that thought

‘Right, well, however ill I am, at least I’m here and I shall do whatever I can, when I can, for the children because they are the most important thing (at this point they were only 2 and 5 years old) and the rest (i.e. an career plans, creativity ) can go hang because I can’t do it all now like I used to (and boy did I do it all !!!) and so I must set priorities…and they are number one.’

Now I’m not so sure that holds true any more…even for my son who is more able and independent, despite everything. Maybe it’s time to try again and move out into the world no matter how unwell I might feel at times.

Maybe those shadows I keep sensing, maybe those glimpses of something else are beckoning….but it’s a very scary place to be.

Snakes & Ladders

Well, long time no see/hear/write and I feel like I have been neglecting this blog and you, dear reader.

It’s been nothing personal --- nothing you’ve done. I’m still very fond of you but circumstances have been against me for a while and I have had to concentrate upon those things which have to be done rather than those things which I’d like to do: like attend to my blog.

Before Christmas, partner was first told that hours would be reduced because of financial shortfall at employers :

Cue Famille Cusp shivering in dark corner wondering where the next scheckel will come from.

Shortly afterwards a number of employees cleared off saying they could not survive on reduced hours and had found alternative employ and then others were very poorly with the Christmas lurgy:

Cue partner not having reduced hours but increased hours and trying to fill in for the people who were no longer at work or able to get to work.

Cue Cusp trying to do all usual Cuspish chores-domestique plus many of the other things partner usually does.

Cue Tired Cusp and Failing Cusp and then Christmas.

Christmas passed by in an interesting manner. Baby Jesus hath smiled upon the Cusp Household in that we did not fall low in the face of the dreadful flu bug which seemed to beset all and sundry around and about us but son of Cusp did succumb to funny virus and infection in eye . The latter was very worrying since he is already visually impaired and has glaucoma.

Cue many trips to hospital and checks and drops and unguents.

All better now --- well nearly ----but it made for a quiet-ish Christmas with many trips up and down stairs with trays of food, providing company, watching videos, DVDs, PS2 games and many trips to hospital and calls to NHS Direct; not being sure if an array of symptoms were due to eye drops’ side effects or funny virus or both.

Cue Cusp and partner v.tired after Christmas

….and..breath….ahhhhhhhhhhhhhhhhhhhhhhhhhhhh ;0)

So that’s what I done in my holidays, innit, and now it is taking many a day to try and pull everything together again and feel like I have some control over the domestics and myself for I have not able to rely on my body (not that I EVER feel I can rely on it) for weeks.

When things are poodling along in their usual family-life kind of way it is relatively (and I say RELATIVELY) easy to try and fit my energy management regime around circumstances and stay on an evenish keel. I can more or less tell what I can manage and what I cannot. I can more or less tell how far I can push my limits without disaster. God knows I have had enough practice in managing what’s left of my energy. But when I am beset by unusual, unpredictable circumstances the whole thing goes to pot. I cannot rest when I need to. There are things that have to be done, people that have to be cared for, animals that have to be fed, cleaned out, walked. It’s no good taking on all the sensible advice about ignoring housework and only doing what you have to do because what has to be done in this house when unusual circumstances arise is more than I can really cope with but they have to be done.

And now there is beginning to be some semblance of the day-to-day routine that passes for normality Chez Cusp…and I am at sea: unable to get used to being alone again, occasionally liking the solitude and the next moment hating it, feeling as if I should be doing something productive but not knowing what and having a horrible feeling that life is passing me by, has passed me by.

….and breath…………………

Life is complicated and I am at that point (as is oft the case with PWME or any other chronic illness) where I could shake a fist at the sky and tell the whole damned thing to clear off, leave me alone, I’ve done my time, I’ve made my amends, done all the right things, listened to the advice, listened to the doctor, the healer, the insurance company and none of it has done any good. All that works is time passing and being careful and cautious and biding my time. I feel like I’m in some religious order locked away from the world. Maybe I should buy a habit ?

Rachel (The Creative One) sums up the dilemma very well:

‘Motivation is not an issue with this illness. Desire to do more, be more, is never a problem’

You progress, you want more, you do more, you wait, you wonder, you fall or carry on ….you’ve done more, you progress….but there’s always that hesitancy, that fear, that feeling of being unreliable to your self and to others so that you don’t feel able to jump back into the game.

As one of her commenters (Nina) puts it:

‘………you can’t be successful there unless you can continuously produce! I, too have gotten (what to me seems) much better, but when I’m in the real world, I realize it’s a relatively tiny improvement…’

And there’s the dilemma again for you can do all the right things but it’s never enough. The rest of the world moves too fast and unless you live on an island worldly matters impinge on your progress and you depend on the love and care of others to survive ---as we all do.

This ME life is one of snakes and ladders

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