I didn't need to choose a new life. All I had to do was to decide to
turn towards it. All I had to do was to accept it. This meant, of course,
learning to live in and from my body and not from anyone else's
Sunday, 29 April 2007
Friday, 27 April 2007
The results, in brief:
- I need a wheelchair. Quick. It took them more than a year to assess me. Spurred on by the magnificent Sally, I finally kicked off big style last week and they turned up. Now I'm told that although my case is likely to be prioritised, I could still face a wait of another year, possibly two, for an actual wheelchair.
- I am too ill for physio. A physio visited me at home to tell me that if they have to do home visits they generally consider a patient too fragile for treatment. I am too fragile to be mucked about with, or to do exercises, that much is true. But she did deliver the news in a slightly 'irritated to have been called out' manner. Well don't come then. I've got plenty of things I'd rather be doing too!
- I will soon be in receipt of a grabby stick and not so soon (social services involved) various rails and ramps will be installed. I envisage having a ramp for a wheelchair, ooh, at least a year before the chair itself. That's if the landlady doesn't throw up her hands at the prospect of alterations, albeit all temporary ones.
So there you have it. Tape measures and discussions galore, and yet I suspect nothing much will happen very imminently. So I will settle back into the quiet life of being chronically ill without much input. And sometimes, that seems more appealing than a lot of fuss and bother that seems to go nowhere. Then my GP called today to say a nurse will be round on Monday to do 'some blood tests.' *!!*!??? why now all of a sudden, unprompted? It's the bus situation again. They really do all come at once. I'm off to watch some gardening programmes and have a nice cup of tea.
Sunday, 22 April 2007
I am piano doodling. Just a few minutes here and there but there are ideas emerging. I just need some way of recording them, these doodles, because if I don't at least write them down they are lost within an hour or so. Can't find any manuscript because of the move and really I'd rather record as it's probably easier. I need to phone a friend. There is to my mind no way of connecting an upright piano to a computer. And even if there were, I would only trip over the wires. So how is it done? And can a decent sound quality be achieved? I know the piano needs tuning that's for sure. It's been neglected for so long, but now we are getting to know each other again. But mp3 files? Recording and transference of said files on to computing device?
Unfortunately ich do nat undyrstande the technolygie. Yes, I have just discovered that Geoffrey Chaucer Hath a Blog. He recently attended the gym, having been advised by his doctor to take up some form of exercise on account of high cholesterol and an expanding girth.
"So ich haue ben yiven up to sondry peynes and tormentes far more grevous than thos recorded in the helle of Dant - many grim machines that doon twisten myn limbes this wey and that, and bicycles the which travel no wher (ywis, hym Sisyphus wolde haue a conveyance swich as thes 'stationary bicycles' which labor the legges but move nat oon paas forward), and large men who clamor at me to "feele the burn." Ywis, ich wolde rather feele the burne of the flaymes of sathanas than feele the burn of the gym! "
I had to share this, it made me laugh so much. I came to it via a link from Bracknell Towers. Her Ladyship does have an extraordinarily diverse links list. Back in the mists of time I recall I was half asleep, hungover or not present for most of my Chaucer tutorials at university. They were scheduled at 9am, which was a tad unrealistic an hour for most of the group. But it was still my favourite area of study and had I done an M.A. Chaucer would have been the man. I am so glad to find he is blogyng. Those who wish to read The Canterbury Tales can do so here or may I recommend for those who need to recline with a book, The Riverside Chaucer.
Saturday, 21 April 2007
I am feeling my way into this expanse of Friday night, Saturday, Sunday, into Monday.
He is away doing what boys should be doing. Getting grubby, getting into trouble, playing football, laughing, shouting.
This weekend they have gone to the seaside.
I wish him ice cream and sunshine and sand between his toes and rock pools. Frisbee on the beach, paddling, the salt in the air, I smell the sea in his hair as I pull him back, close to me.
I wish I could be with him.
I wish he was with me.
But most of all I wish I wasn't ill. At times like this.
So I get up, have a bath, put on the washing machine and I feel comforted by white noise. It soothes.
Since I became ill Kate Bush released an album with a song I haven't managed to hear yet. I think it was meant for a day like today. People think she doesn't make any sense, but she's always made perfect sense to me. My son is at the seaside. I am here. These are the lyrics to Mrs Bartolozzi on Kate Bush's latest album. Can you feel what I am feeling?
I remember it was that Wednesday
Oh when it rained and it rained
They traipsed mud all over the house
It took hours and hours to scrub it out
All over the hall carpet
I took my mop and my bucket
And I cleaned and I cleaned
The kitchen floor
Until it sparkled
Then I took my laundry basket
And put all the linen in it
And everything I could fit in it
All our dirty clothes that hadn’t gone into the wash
And all your shirts and jeans and things
And put them in the new washing machine
I watched them going round and round
My blouse wrapping itself around your trousers
Oh the waves are going out
My skirt floating up around my waist
As I wade out into the surf
Oh and the waves are coming in
Oh and the waves are going out
Oh and you’re standing right behind me
Little fish swim between my legs
Oh and the waves are coming in
Oh and the waves are going out
Oh and the waves are coming in
Out of the corner of my eye
I think I see you standing outside
But it’s just your shirt
Hanging on the washing line
Waving it’s arm as the wind blows by
And it looks so alive
Nice and white
Just like it’s climbed right out
of my washing machine
Slooshy sloshy slooshy sloshy
Get that dirty shirty clean
Slooshy sloshy slooshy sloshy
Make those cuffs and collars gleam
Everything clean and shiny
Friday, 20 April 2007
P.S. Oh the relief. He is fine today.
Wednesday, 18 April 2007
Today, after nothing for a few days, the smell returned with a vengeance. I was advised to call up again should there be any more problems - better safe than sorry.
But this time, the man who walked through the door took one sniff and said "You've got something rotting somewhere. That's definitely the smell of decomposing matter."
What matter? Where? Oh no! Surely not the Amorphophallus Titanum lurking in a corner somewhere?!
He did all the gas tests again, which were of course clear, so confident was he of his theory, and off he went, leaving us with something rotting, somewhere.
Where? I need to know now. This is most disquieting.
"It'll probably get worse in warm weather," he added with a grin before departing, "but it'll go away eventually."
With temperatures predicted to top 100 degrees this summer I could only despair.
We have a dead something, somewhere, and I'm not sure how to get to it.
"It's more than likely to be a rat under the floorboards, but unless you want to take the whole floor up..." he sighed, shaking his head as he went on his way.
OF COURSE I want to take the whole floor up. Get the thing out of here. Now!
I imagine my only course of action is to phone the environmental health department. I just don't know what priority they attach to the removal of dead mice/rats/pigeons/former tenants/Amorphophallus Titani, or whether they have the time to come round and take the whole floor up.
It's just so strange, the way the smell comes and goes.
Maybe we have a poltergeist. Or a poltergeist Amorphophallus Titanum. Now that would be something to behold floating around the room.
Tuesday, 17 April 2007
Goldfish, Lady Bracknell and everyone who contributed did a fantastic job last year. Let's sock it to them this year as well. More info and guidelines here. I'm really looking forward to putting something together. Last year it was heartening and informative to read everyone's perspectives but I wasn't in a position to write. It is largely through becoming part of a wider community online that my own views are being more clearly thought out, developed and articulated.
P.S. Lunchtime: Just read Lady Bracknell's One in Seven again. It really is a superb piece of writing, and what Blogging Against Disablism is all about.
Saturday, 14 April 2007
It's becoming increasingly and rapidly apparent that if I am to succeed at this single parenting lark there are certain things I really really need, like yesterday, not next week.
Have nothing in your houses that you do not know to be useful or
believe to be beautiful.
Hmmm, should have thought all this through a little better, but then your body will notify you of problems as they arise and not necessarily in advance.
I am lucky enough to already have in my possession an NHS perching stool. Oh it is so very, very ugly and being something of an aesthete I hate the way it clutters up the kitchen with its shiny, clinical blandness. So today I festooned it with ribbons, for the entertainment of one bored cat. It is being used so much more than it was, as in addition to providing a diversion for Ralph I am using it to wash up, sometimes twice a day. Quelle horreur! This is such a pointless waste of limited energy resources. Which is why a countertop dishwasher (hurrah, no bending, plus bargain off ebay) is soon to be plumbed in. But then, I always did hate washing up. And I never got the ironing thing either. As soon as I moved, the board went under the stairs, and there it will stay.
But all of a sudden a grabby stick seems to be my number one object of desire. I positively yearn for one, as do all my muscles. I have physio on Wednesday first to see what the bloody hell is going on with my back, but I can't see them disagreeing that I need something to stop me bending and reaching for things.
So, a grabby stick, a perching stool, everything at counter level if possible (I have ditched the oven since discovering my bargain microwave is also a convection oven AND a grill - oh happy, happy day). Home support twice a week for an hour, and a cleaner every fortnight. And, lest I forget, friends being marvellous.
Then there's the mobility scooter. It's been on the cards for a while and I'm currently battling with the local wheelchair service to get a voucher, providing some money towards it if I'm lucky. The scooter question in general is proving to be something more of a psychological barrier, so the delay is almost welcomed. But is there really any point in gritting one's teeth all the way to the shops or school when one could sail down the road waving at everyone instead?
The house will need a ramp, and it's rented so that will need careful negotiation (as will the ramp. How do you open your front door whilst seated on a scooter halfway up a ramp? If you get off to open the door does it roll back down, or do you turn the thing off and hope? There is no handbrake). And if it is to be parked round the back, the gravel will have to go from the patio as I don't think scooters like gravel. I may be wrong.
David and Andrea got me thinking on accessorising accessories. That is, beautifying the ugliness that pervades disability aids. An interesting observation was made that whilst bluetooth headsets are cool, hearing aids are not. And yet they are both worn on the ear to assist hearing. It's just that one is worn ostentatiously, the other often tucked behind the ear, its fleshy, beige tones designed to make it supposedly invisible. If you happen to be white, or a beige tone. It is interesting to note here how disability, or more precisely a perceived deviation from the norm, is viewed by society. Society being the 'in' crowd, the ipod sporting, headset wearing, mobile brandishing mainstream.
Yes, I know crips use all these things too. I think the point was that whilst bluetooth headsets are a cool accessory, a beige hearing aid is not.
I haven't felt very mainstream since becoming ill, as my condition makes ipods, bluetooth headsets and mobiles (or any phones, TVs, stereos, traffic...anything that makes a noise or is bright) painful and nerve-jangling.
My aids are primarily mobility aids, and at times of distressing sensory overload, sense buffers such as noise reducing headphones (can't recommend enough), earplugs and shades.
I had some utterly fabulous shades, very Audrey Hepburn, which were both cool and cunningly disguised as a disability aid for my light sensitive eyes. Get it? Shades...cunningly disguised. Never mind. Anyway, they are lost. So I need some more, and quick, given all the lovely weather we've been having.
The shades are the only item that for my disability needs are instantly 'cool'.
But should this matter? Should we accessorise our aids? Should they be cunningly disguised, whether it be sticking stickers on a hearing aid or festooning a perching stool with ribbons. Oh, go on then, here he is again...
Personally, I see it as ownership. A customised aid becomes your own aid, in your own style. I will see what suggests itself when my grabby stick arrives. The one I'm considering has not only jaws, but also a nifty suction cup. The possibilities are endless. A dinosaur head or shark head, or maybe some weird alien being with jaws and a sucky thing.
Of course, such customising may make the grabby stick utterly useless so it will be very much a case of trying out different ideas. Or maybe I'll like my grabby stick just as it is. Can't quite imagine I will though somehow. When did you last see a grabby stick designed with the words of William Morris in mind?
Just not sure I'll be sticking 'Go Faster' stripes on my mobility scooter, as a friend suggested. Was this to make the whole thing more bearable for me, my son or for the friend? There's customisation, then there's attempts at humour that don't quite seem, well, funny really. Well, not to me anyway, at this moment in time.
Plus my son is fine with it. Better in fact, than I am. He said a while back, "Mum if you need something to save energy and get around quicker, just get one."
Thursday, 12 April 2007
Don't get me wrong, I am also sad and tearful, having left my partner of ten years. And the exhaustion is quite incredible.
A friend likened it to escaping from a hostage situation, and she says such euphoria, sadness and exhaustion are quite understandable. I was certainly emotionally imprisoned, neglected and, towards the end, abused.
But I think we were both hostages, with my illness representing the captor. And it really screwed us up, seeing the illness like that, and in the end led to a very bleak existence. It was definitely time to get out.
Actually I wasn't a hostage, because I released myself, and in doing so released both of us and I don't feel like a hostage now that I am out of that situation. Because I am further along the road of acceptance. I am ill. I am going to be ill for a long time. I can't do many things I would like to be able to do. He found that hard to accept.
I don't have any bad feeling towards my ex. I understand why he became depressed, and why that depression turned into hatred and anger. And I in turn could be hateful and angry too. Because I wasn't being loved. I was being resented and hated.
It had to stop. When you remove all the twisted behaviour on both sides, it still isn't my fault that I am ill. I'm not abdicating responsibility for coping with being ill, but to hate someone for it...? He tried to cope, we both tried, but we couldn't adapt as a couple, so separating makes total sense.
And yes, all my divorced or separated friends are right. I wish I'd done it months ago, if not years.
But so much has gone RIGHT with this move that the sadness and exhaustion are bearable.
Things that have gone right:
- My son's favourite Razorlight song was playing from a house on our new street when we walked up to our new front door. Then he found a penny and we saw a black cat. Superstitious, moi?
- My son loves this place. He is, in fact, a different child. It's as if a weight has been lifted from his shoulders. Loads of his friends live nearby and people are being very kind and helpful all round. I believe in asking for help when it's necessary.
- The sun has shone almost constantly since I moved.
- We got to keep Ralph, our now officially adopted cat. And there's a really lovely story to this.
I had to bite the bullet before the move and invite one of them over for the inevitable chat.
When they heard the circumstances and how attached my son is to Ralph, the four of them had a chat, then drew up an official adoption certificate stating that as my son had looked after him so well he was now officially the new owner. And that's official. Signed, laminated and on his bedroom wall.
It was honestly one of the nicest things anyone has ever done for us. It's because he's a very special cat and they really loved him, but they were still prepared to let him go.
I did them a watercolour, only wishing I was more expert with a brush.
Such generosity of spirit seems to abound at the moment.
More things that have gone right:
- People are going to muck in and help us sort out the garden (it hasn't been touched for three years).
- I had loads of help with unpacking.
- I have felt so relieved and at home, and so quickly.
- Everything I needed to happen just seems to have happened.
Beauty does exist in life. If you are in a bad situation, you can change it. And people can be caring, generous-spirited and helpful. Yes, I know I sound corny, but basic truths can be a bit like that can't they? And when you've lost sight of the truth, then regained it, you want to share it.
Tuesday, 10 April 2007
Tuesday, 3 April 2007
And I didn't even mention that I am moving house. I am moving ho (no, stop it, enough, give everyone a break).