Tuesday, 27 February 2007
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other's welcome,
and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you
all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,
the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.
Sunday, 25 February 2007
Well that's better. Some daffodils in the house make all the difference. Last night I stayed up into the wee hours taking a closer look at Flickr. In fact I've made a start at putting some of my blog pix up there. It's well worth checking out if you have an enthusiasm for photography (note, enthusiasm rather than aptitude, which I would never be so bold as to presume) and wish to share your images and see some beautiful stuff by other people, such as An Unreliable Witness, whose work, in all genres, I like very much. There are all sorts of groups at Flickr you can join to suit your style and interests. It really is a great place. Gladdens the soul. Bring on the daffodils, sunshine and some beautiful things to capture! Enthusiasm is a great thing. It alleviates all manner of ills.
Saturday, 24 February 2007
Friday, 23 February 2007
Wheelchair Dancer made me think and smile with her account of turning down some nude work. She is always so acerbic and wry and this is no exception. She questions why the ad asks for a gorgeous wheelchair woman. What is gorgeous? Who sets the standard?
I was horrified to read about the prejudice experienced by Emma at a job interview. No one should have to put up with that sort of behaviour and yet I expect it goes on all the time. Being quizzed over your condition rather than the job you are applying for is just wrong. But I've experienced it, as have many others who have a history of mental ill health, although Emma wasn't writing in this context. It's just that when it's something you have an option to conceal, you are tempted to miss out periods of illness from your CV. But now I have to be more honest as I'm physically disabled too. Not that I'm working at the moment, but why should I hide anything anyway? She got me thinking about how to 'fit in' and how to 'not fit in' and it not be an issue.
Disgruntled Ladye has an arthritic illness that is invisible. She is therefore subject to the very specific and unpleasant daily ignorances that come with having an invisible illness. She sums up very well what that feels like and offers the following advice to people in the workplace who find a colleague odd, or different or snappy when they look,well, so 'normal'.
"Maybe that person is dealing with a chronic illness or invisible disability. None of us have a right to judge. And, as long as that person is getting their work done, what does it matter to you?" Well said.
Also well said to Wheelie Catholic who had to endure an outrageous incident involving negative labelling, but tried to turn it around into a positive learning experience. Very brave, and very necessary.
I'd love to write more on these excellent posts but my son needs some calamine lotion. He has chicken pox. More later if I can.
Back after an interlude of three hours, watching Black Beauty (depressing) and applying lotion (fun but tricky).
Blind writers at Blind Confidential and Stephen Kuusisto ponder the limitations of internet access and incompatability of voice software. This leads to people with visual impairment being excluded from certain activities or work tasks that are web based.
Manxome writes with great feeling for the loss of her great uncle, who had a huge heart. This post moved me, and she shares with us everything she learned from him.
All this, and the few I haven't shared here, got me thinking. I will post some thoughts when it's all settled down.
Thursday, 22 February 2007
Wednesday, 21 February 2007
My brain really isn't in gear tonight so check out Mark's page tomorrow and here to join the DWP debate.
I had to venture out today and left a newly purchased Calvin and Hobbes book in Holland and Barrett. This is to hopefully be resolved tomorrow. Wonder what they made of it?
Those unfamiliar with Calvin and Hobbes should note that, in my opinion, it outclasses any other cartoon strip by miles. In fact I don't really like any other cartoon strips. Their creator Bill Watterson stopped producing them in 1995 as he became disillusioned with the whole media lark and wrangling over not over-commercialising his creations, but there are many collections available that he did allow, all hilarious. But then comedy is so subjective. Calvin is six. He has a toy tiger (Hobbes) who comes alive when no adults are around, and they are generally to be found getting up to no good and musing and theorising as only precocious six-year-olds and stuffed tigers can. Watterson considers Hobbes reality to be more of a philosophical question, concerning perceptions of reality and the co-existence of different realities for different people at the same time. Kind of appropriate in the disability arena, come to think of it.
Tuesday, 20 February 2007
Monday, 19 February 2007
But for those of you not yet familiar with Ralph (who shouldn't really be called Ralph on account of his superb looks, but he isn't mine yet as he has just kind of moved in from across the way so I can't rename him officially until they've completely given up on him...plus I'm moving soon too) here is a photo. I do love him so. Interlude over, please dispose of sick bags accordingly.
The idea is a graded return to working and earning. The reality is somewhat different.
Now I ran into an interesting situation when I resumed some work, for a short time after becoming ill. I'd stopped working when I went on to Incapacity Benefit, but after a time wanted to do a bit of work again. I followed the rules, wrote to my local JobcentrePlus office, contacted the Incapacity Benefit office, and was promptly turned down for Permitted Work.
On what grounds? The Decision Maker (God I hate that term) decreed that I wanted to take up work that I was doing before. This wasn't allowed. What's wrong with that, you may ask? Well, according to the people who make the rules, you can't just go back to your old job. In my case, I worked from home, am freelance and have such restricted energy and mobility due to my condition that the ONLY work I can consider taking up again is short bursts of online work. Such work is out there, but this didn't seem to fit with the rules.
I wrote them a letter, with a supporting medical letter, explaining that I wasn't returning to my old job in the true sense of the word as I was taking on writing that didn't require me to leave the house. Online work, rather than out-and-about work. No meetings, conferences, just me and a desk, a computer and (on a good day) maybe a phone. I didn't hear back, did a few bits of work with my health continuing to decline and then had to give it up anyway.
I was left with a sense of frustration, to put it mildly, and thought of all those people out there who want to resume work, but are not allowed to because they want to do what they have trained for, built up a business doing, and want to do again.
What is the problem? Have I got it wrong? It seems not.
The latest version of what you can do, and how, when thinking about returning to work is here
The main issue I have is that when you've not been working for a while, they automatically assume you need your hand holding when approaching the big bad working world again.
The fact that someone may be prepared to rebuild their career from home, start paying tax again and generally feel more useful and, well, employed, kind of passes them by.
You seem to have to, and correct me if I'm wrong, enrol on a workshop, do some voluntary work, work in a hospital and suchlike to become employable again.
Or, you can only do two stints of Permitted Work at 26 weeks each (adding up to a year) followed by a year's break. Why?
My confusion over the rules tells its own story. It becomes very difficult to know who to approach, what advice to ask for and how to resume the work you WANT to do, and that fits in with your ongoing ill health, when things are this unclear.
The fact that I am self-employed should not complicate matters or prove a barrier to me working again. On the contrary, it should be encouraged.
Basically, I want to write again. I want to stick within the allowance of £86 a week or whatever it is, and build it up until I can inform the Incapacity Benefit people that I don't need it any more. That would be nice. It would make me feel good.
But with the prospect of being channelled into a 'scheme' for which I am entirely unsuitable given the fact that I have to rest for long periods each day, I am not inclined to give them a call.
I have to choose the best moments in the day in which I can work. As a freelance, self employed writer, I can potentially do this. Lucky me, if only the rules weren't getting in the way.
Thursday, 15 February 2007
"Oh they're not really interested," my estate agent breezes. "They're just getting a feel for what's out there, and will be viewing one up the road in a minute, which they are far more interested in."
At which point I politely directed them in the direction of said house up the road, "as I have measuring up to do." Said somewhat pointedly. But fair enough, I felt.
Then I noticed the damp patch on the wall, and a second query about a rotten window frame elicited a somewhat vague response when the estate agent returned from the house up the road, young couple no longer in tow.
I've been reading about The Goldfish's moving horrors and it has got me wondering about who is responsible for what and how when renting. I know my dilemma is not quite up there with her plight, but what rights do prospective tenants have? Is it reasonable to ask for a letter detailing by what date specific repair jobs will be attended to, before handing over your deposit and month's rent? Is it reasonable to ask if the boiler has been serviced and the furniture is fireproof? Or does all this questioning just put a landlady off and make her think "Sod this. I'll wait for the next tenant to come along." Que sera sera I suppose.
Wednesday, 14 February 2007
Tuesday, 13 February 2007
But events are unfolding before me at a rapid pace. In short it involves a relationship breakdown (mine) and a house move (possibly imminent).
I am between my current abode, where my computer is, and my mum's (where I can rest and absorb the hugeness of events).
It's all going to work out ok. This has been on the cards for a long time. Got to dash. Viewing a house. Some finger crossing from those of you not busy typing would be much appreciated.
Will post again when I am back later in week.
Saturday, 10 February 2007
Friday, 9 February 2007
In the meantime...
Take this simple common or garden wheelbarrow. Dumped against a wall doing nothing one day. Now transformed by a sprinkling of snow. Even the utilitarian can be beautiful.
Soon, I promise, there will be no more snow posts. But please indulge me in the meantime. It's providing a welcome distraction from some major pressing issues, which I will go into in more depth when I feel able.
I could have gone further with sledging shots, tree shots, but I'll call it a day for now.
Thursday, 8 February 2007
It was such a joy today. That real childlike joy that brings out the kid in everyone, most importantly the kids, who I feel are far too overburdened these days with homework and assessments to really enjoy the experience of being a child.
More snow please. I feel thirty years younger. Which feels great.
Bobby and Wheelchair Dancer wrote with force and feeling on how your own family's attitudes to disability, and reaction to your own disability, can really mess with your head. I related to much of what they said, especially the overwhelming sense of frustration, anger and determination that an independent life will go on, with or without understanding and support.
Kay and Mark considered how socialising, contact with others, has been shaped by their experience of disability. Mark wrote about his wish that he could meet up more often with people who can understand and share where he's coming from 'in a world that is entirely too normal'. I feel cut off at times too, in fact a lot of the time, but am finding writing here offers contact of a different but nonetheless very nurturing sort.
David wrote a quite beautiful post about Meredith, and how...actually I'm not even going to try to recount it, he captured it so perfectly I would spoil it. Just read it.
Thirza and Book Girl share my defensiveness and need for self protection when encountering the medical profession. I hate nearly all doctors these days, and have concluded that the only person who can sort your head out is you. There can be guidance with the physical side of disability, whether it's therapy, physio, pain management, and all that jazz. But no one can force you to a place of acceptance before your time, or mould your reaction to what is your own unique experience. This is somewhat stating the obvious. But I have spent a long time in not-blissful ignorance of quite obvious things. I am radically reducing the time I spend being 'messed with' medically. It's called taking the reins.
Thanks to those who wrote lovely things about my post.
Tuesday, 6 February 2007
I didn’t want to end up in orbit.
I didn’t want to lose contact.
I look down at the earth.
I want to be part of it again.
The notion of losing contact spoke very strongly to me when I was considering writing a post for this carnival.
How did I lose contact? Why? And how has losing contact affected me, and those around me?
Well, it was both sudden and gradual, a case of losing contact with others, with normality, with myself.
Losing contact because people I knew struggled to accept the ‘new me’, the ‘me-with-a-disability’. They struggled even to use the word disability in connection with me, because I suppose it’s alien to what they knew before, and what they know in their own lives and the lives of people they know.
Losing contact with normality because for a time my disability, or the adjustment to it, robbed me of routine, work, structure, interests, socialising, going beyond my house.
Losing contact with myself because the experience of becoming disabled was initially, for me, so traumatising that I was thrown off balance. Hit by a tornado, it felt as though I was hurtled into the stratosphere and beyond, to become a speck in orbit around a world that carried on.
My illness came very suddenly and I was instantly severely impaired both physically and mentally. My senses were so interrupted, confused, disorientated that I had to withdraw.
I read recently that touch can play an important part in healing serious illness. A touch from someone who cares can nurture on many levels.
But because I withdrew, and because those around me struggled with my altered self, I couldn’t experience that healing.
I craved contact, a reassuring touch, a hug, to lie in the dark and have my head stroked until I felt better.
None came, or so it seemed. In fact there were people trying to reach me, but I wasn’t receiving. I withdrew and lost contact even with myself.
To experience such utter isolation feels like being in orbit. Like a module floating around the earth, a world from which I came, which I was part of, and which I was blasted from without warning.
Silence descends, a heavy cloak that blankets time and muffles the enlivening sounds of everyday life that occasionally filter through the dark.
Disparate, disjointed noise floats my way. TV, music, laughter, shouting, parties, fireworks, the pub, the playground.
I pick up these sounds, and yet feel so far from them, and the people they envelop.
I am floating way up above a world that seems to carry on without me. Or I was.
Until I realised that I had to launch my own rescue mission. I had to make contact. I had to reconnect in a new way, as a new me, the me that was rejected, that I rejected, that broke up and came back together but different.
Slowly I am sending out signals, sometimes unintelligible, sometimes so clear they hurt the ears of those who are listening.
I am quietly making contact in a world that seems so noisy that if you become quiet you go off the radar.
But quiet can work. At my computer, writing my blog and reading others it works. Feeling less alone, peculiar though my illness is and difficult though my behaviour can be, I feel reassured.
And trying to make it beautiful.
But if we choose to observe the lessons within what life has thrown at us, if we become less passive and actively seek out the value in what we have been shown then surely wisdom will follow.
I would love to be wise. There are many people I admire who possess this quality. I don't think it's necessarily a word that people connect with me. But it certainly feels like something attainable. Which is progress.