BADD 2007: From where I'm sitting

These photos mark my first time out in public with something noticeably different about myself. I have been building mentally towards this moment for a long time, so I decided to make it as peaceful and creative as possible. As is so often the case with my fears, it wasn't quite as bad as I had anticipated. 'It' being the anticipation of being stared at, marked out as one of 'them' rather than one of 'us'. I feared this new realm of visible impairment - as instead of shuffling about in a somewhat weak and pallid manner, resolutely still up and about on those socially acceptable two legs, I was seated, using four wheels, you know...one of those things that 'disabled people' or 'old people' need.

My condition has led to me needing a wheelchair, and I have needed one for quite some time now. Getting one is another matter, but I am not in the mood for ranting about the inadequacies of our health system.

Given that I am without wheels but in need of them, I decided I would take action and go out there and find some. Being stuck indoors in Springtime, apart from the odd brief taxi journey locally, becomes very tedious and frustrating after a while.

I went to the Botanical Gardens. No one shrank from me in horror or bewilderment (but she's so young!), no one leapt out of the way as I experimented with the speed dial on the motorised scooter I hired out, and no one gave me a single 'funny look' - what I was dreading the most.

Given that I felt sick in the taxi all the way there just at the prospect of 'going public', at the prospect of dealing with society-at-large's reactions, it made sense to me to go somewhere tranquil, on my own, with my camera. Rather than a shopping centre. Yes, they have scooters to try out too, but I have no money. And I'd rather photograph flowers...

I actually feel so enthused at having turned a fear-laden prospect into a creative experience that I now have fanciful notions of becoming a wheelchair photographer, with more than a nod to Wheelchair Dancer.

In fact, in the middle of writing this for Blogging Against Disablism Day I've just read some of her latest thoughts. To have been thinking of her seems uncanny when I flick over to her blog and see her recall her very first post:

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
preconceptions.

There are so many people I have encountered online who turn their experience of disablism into a positive one. No, it isn't always easy, and living with the burden of other people's prejudices (or sometimes even just the anticipation or fear of them) can be as wearing as coping with your actual day-to-day condition. As I have read many times there are crappy comments to put up with, which I have yet to encounter. And the monumental struggle with bureaucracy and health and social care systems (which I am encountering in bucket-loads at present) seems universal.

But for now I believe my camera is going to help me in the transition from legs to wheels. As I have already stated, it will be a while before I own my own wheelchair so I will content myself with going to the Botanical Gardens from time to time, where I can acclimatise to motorised mobility in peace. You certainly get closer to flowers from a seated position. Ideal for macro shots that's for sure.

And just as I was lining up this shot, a gardener was waiting, rather impatiently, to water the bed in question with a hose. I took my time, as being surrounded by so much colour and vibrancy after many weeks spent largely trapped indoors peering out at the sunshine felt like being let loose in a sweet shop. When I did finally move she was most emphatic with her fastidious hosing and I did smile to myself at her impatience. What's the hurry, I wondered, on such a sunny day? Then it occurred to me that she works there, whereas I was there to purely enjoy all her efforts.

I was utterly wiped out on returning home from a two hour excursion. But what a gentle introduction to using a chair, or scooter. If anyone raised eyebrows or tutted that I was blocking the way, I didn't even notice, as I was so absorbed in taking pictures. Perhaps it is something of a welcome barrier, having a camera. The camera separates you from the reality, thereby offering a level of protection.

Only, in that case, to truly record my first outing on wheels I should have been photographing people moving out of my way, or not moving, or raising an eyebrow when I occasionally got up and left the scooter to get closer to a particular subject, or not batting an eyelid at all. But as I said, I never even noticed, I didn't set out to notice, and I've concluded I really don't give a monkeys anyway. Well, okay, that's not strictly true. I do care, and perhaps I deliberately set out NOT to notice. Taking on board people's reactions is something I will need to confront in time. But in my own time, when I'm ready.

Tea and sympathy

It's been a busy old week. Many and varied health professionals have passed through my door to offer their assessment of my newly urgent needs.
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.

This helps

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.

Acres of weekend and the sea, the sea

I have a son, and he is always with me even when he is not with me. And yet, when he is not with me I feel very empty.
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

Washing machine
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
Washing machine
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

Washing machine
Washing machine
Washing machine

Something else in the air

Ralph has the runs. Oh the heady blend of odours combining in a fragrant mist over our new abode. This is a picture of him perfectly settled before trouble hit. Change of food, methinks. Bloody supermarket gravy stuff. Foul, liquid concoction. And that was before it came out of the tin and was processed by Ralph's insides. Enough! This site is descending into a stench-filled cesspit. Beauty will be restored as quickly as possible.

P.S. Oh the relief. He is fine today.

Something in the air

The other day there was a very strong smell coming from our front room. We called Transco, who came out within 15 minutes and very efficiently performed a number of tests involving funny little bits of tube and beepy machines. No gas.
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.

May 1 is Blogging Against Disablism Day

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.

Accessories for the aesthete

Have nothing in your houses that you do not know to be useful or
believe to be beautiful.

William Morris

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.
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."

I am happy

I am happy. This is a delightful feeling, having been almost completely absent for, oooh, a long time. Sometimes it hits euphoric, other times it settles into contentment, which is the lasting feeling I am aiming for. But happy is good.
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.

Ralph visited us at the old place for a long time. He is beautiful. We didn't feed him, being respectable sorts who are against catnapping, but in the end his (four) owners gave in as he steadfastly refused to eat back at theirs, then stopped going altogether.
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.

Done it done in

We...have.......moved............house. Internet back up today. Longer post when energy slightly better. Very big emotions going on, and the inevitable exhaustion has hit. Thanks everyone for looking in on The Beauty Offensive whilst I've been absent :-)

My bath is about to overflow

but I had to post quickly to say how very chuffed and amused I was to be honoured with joint first position in the latest in an amusing series of parlour games well underway at Bracknell Towers. Lady Bracknell's Editor placed me in the esteemed company of the Queen_Mum and I look forward to more of these extremely enjoyable and sociable diversions in the near future, maybe even here. Check out the link to Bracknell Towers for the most recent game, and see how well it can work, and just how long people can be entertained when playing a parlour game online. I really am a big fan, and if anyone has any ideas for any more that translate well in the comment box arena, then let us know :-)
And I didn't even mention that I am moving house. I am moving ho (no, stop it, enough, give everyone a break).

Nearly there

Three more days. I have the keys, and an idea in my head of what home will look like in a few weeks once we are settled. I have some ideas for simple ways to brighten things up. It's a nice little house, it just needs that personal touch. Thanks to Sally and Goldfish for helping me with some great top tips for crips on the move. Any more from anyone, please feel free. Tell me your stories :-)

The schedule goes: Mon-Wed pack (well, help others help me pack), Thurs the van arrives. After Thurs who knows? Straight into chaos or debunk to my mum's for a few days? My son is away with his Dad. I am showing him the house tomorrow, then I figured he's best off enjoying himself over Easter. I feel some space to be emotional will spare him some scenes. I don't always have control in times of high stress, so this is the best thing.

I don't envisage having everything sorted on his return. In fact I want him involved in the sorting - it will be important for him.

But our last move was so traumatic (it fell through on the day, and all our possessions were driven off in a van because it was too late to unload, leaving us in a completely empty house overnight. I won't bore you with the rest, but we lived out of boxes for weeks and it was a nightmare) that I want to spare him the stress of our few bigger belongings being shifted this time.

These are moving times indeed. I haven't been able to take any photos lately, but thought I'd post this one I took, when Spring had just sprung.

Spring isn't totally passing me by, but I'm so preoccupied, tired and worried that I feel I'm not embracing it as fully as I might. Hopefully things will look up and this very difficult patch will pass. I am at least pleased to report that things are becoming increasingly amicable and supportive between us, even as we part. He's probably thinking "Thank God!". I know I am at times, but it's more about getting out of a situation than escaping a person. Because none of this is about blame.

I'm sure some reflective posts will follow when things settle down. I really want to share thoughts on how all this came to pass because it's not all about the personal dynamics at play. Our experience is one that many people must be facing, or have faced, when presented with a sudden, all-encompassing change in the previous modus operandi. But enough for now. I ducked out of Dr Who for a few mins, but feel I must return, though quite what the hell is going on I really couldn't say.