Sunday, August 28, 2005

Folking Marvellous

I had quite a trip in my wheelchair yesterday as I went up to the hospital, the dispensary at the doctor’s surgery and the back through town. I was, once again, a little anxious about the crowds. This is Folk Week and we’re coming up to the Bank Holiday weekend. However, I can’t think I have had a smoother journey across town, especially not during the season.

[...] warns me to avoid the pelican crossings on the main roads because the cars won’t stop. I ignore this advice but wait until there’s no traffic or else there’s such a crowd of us on the pavement that the vertical types move out into the road, bring the traffic to a complete halt and allowing me to cross safely as well. Yesterday, at both main road pelican crossings, I merely approached the kerb and the traffic stopped in both directions.
Similarly, people moved out of my way. I mean, not just a bit; they actually stopped in their tracks and stood back in order to allow me to pass. There was one exception in the form of a small boy who ran in front of my chair and before I could stop got hit in the leg with a footrest (which I imagine hurt a lot, and I felt pretty bad about it).

The Folk crowd are, I discovered, a decent crowd. They may have bells around their ankles and everyone of them sports a bushy white beard, but they’re a jolly good-natured lot.

I must admit didn’t think this last Sunday night, when they all got very drunk in the Middle Earth Tavern with which we are in close proximity. Early on in the evening, they sang well-known songs like All Around My Hat and Dirty Old Town (they have to be ones that everybody knows the words to). Then later on, their supply of popular folk ditties ran dry and they resorted to none other than The Banana Boat Song. Now, I have nothing against this song, even sung in muffled chorus at half past midnight, but it’s Folk Week - these are supposed to be self-respecting Morris Men!

I was going to publish some pictures on here, but the best one's belong to EFN (Essex Folk News) magazine, who stipulate that whilst non-commerical reproduction is permitted, this is on condition they are used to promote the traditional arts. While I am quite happy to testify to the folk crowd's good manners, I can't even look at these pictures without a bit of a giggle.

In other news my physio appointment was a bit of a disaster. It was my first attendance having had to cancel the first two appointments I was given due to my varying health. My physiotherapist is Asian and not entirely fluent in English. The language barrier would not be a problem if I had a straight-forward injury or the sort of complaint he is coming across all the time, but as it was I felt I was having to work very hard to make myself understood and in fact he wasn’t understanding very much of it at all. It was very disheartening and I’m going to have to work out what to do before I am next supposed to see him. It could be a total waste of time if he doesn’t understand (a) the nature of my condition and (b) what I am coming to him for. Never mind.

Friday, August 26, 2005

It was thirty years ago today

Actually it was nine. Nine years ago today, I woke up in a lot of pain. I thought it was something to do with my periods, which had always been troublesome. It seemed to be the same sort of pain I usually had in my tummy, but spread all the way down my legs, up my back, into my neck and arms. Unfortunately a few days later my period finished and the pain did not diminish.

It hasn't gone away yet.

I think when it gets to ten years, I may have a party.

For some reason, the third anniversary was the hardest. I suppose it happened to coincide, within a matter of days at least, with my peers getting their A Level results which determined which universities they went to. And the three years aged 15-18 do seem terribly important at the time.

In other news, we're looking at having to move. Our rent is going up by £50 a month in October (15% increase, but the first increase in three years). The Housing Benefit people say that they assessed our rent in May, and only do it once every twelve months. So we're going to have to cover the increase between October and May and £50 a month is a significant fortune for people on benefits.

However, if we did move to a property with a similar, £350 rent, then Housing Benefit would cover the difference because it would be a brand new application. It is red tape, it is stupid, it is outrageous considering that poverty is currently defined as an individual living on less than half the average wage and we receive less than half the average wage between the two of us. Not that I consider us to be impoverished - we're not at all, really. We never have to worry about having enough food or paying the fuel bills. But £50 a month or £12.50 a week will have a notable impact on how much fun we get to have.

And most of all, this comes on top of a period of great turmoil, where there are several big decisions that have to be made and myriad complexities and implications to these decisions. We don't need this. I don't need it. [...] doesn't need it. We don't need it.

And I'm going to run out of painkiller. I have lots of lesser pills in stock and will survive, but the dispensary phone has been constantly engaged for the last three days and I have only got through to them this morning. Unless I am lucky and they have my prescription ready for this afternoon, I am going to have to wait for Tuesday.

All that having said, I am not feeling too bad today. I went round P's yesterday afternoon and caught up with him. [...] is pretty low but hysterically cheerful today. So it's not so bad really. And I don't feel particularly depressed about the nine years. Not at all really. Used to, but now it's just a fact of life, a part of history.

Thursday, August 25, 2005


I have hardly written a thing (proper) since I came home. Okay, I have had a cold, some sleep disturbance, a few bad pain days, and I wanted to get all this wedding stuff out of my system. And frankly it's all a bit stressful here this week. But I am getting seriously frustrated with myself. That is all I have to say on the subject.

Monday, August 22, 2005

The Fate of My Hair - Results!

Voting has ended in the poll as to what I should do with my hair. I know you're all dying to know the results as a grand total of 20 of you have participated in this vote - almost a greater proportion of you than voted at the General Election. And for those Americans who voted, you'll be pleased to know that this time the results made so much more sense than those of the General Election - but then I guess so did the choices you were presented with..

The results were as follows:

No - let it grow so long you can sit on it! 15%3
No - keep it at it's current length! 15%3
Yes - get it cut to shoulder-length! 35%7
Yes - get it cut into a bob! 15%3
Yes - get it cut even shorter! 5%1
Yes - have it all shaved off! 15%3
20 votes total
Poll results are subject to error. does not pre-screen the content of polls created by Pollhost customers.

Using the same hi-tech computer technology which means that all CGI simulations of our long dead ancestors look exactly the same when they recreate them on Horizon, I now present to you a not even vaguely accurate image of what I would look like with my head shaved, which took a painstaking five minutes using a state-of-the-art computer program (Paintshop).

You may be wondering about the goatie beard, but I find that many bald people grow a goatie beard and look the more attractive for it. I don't imagine I would be any exception.

Actually, it's growing on me (the idea, not the beard just yet) and it would be nice and cool in this weather...

Sunday, August 21, 2005

Wedding of the Century - The Wedding

Rosie came up the aisle to Lauda Jerusalem, sang by a choir made up of their various musical friends – including our old music teacher, the legendary Mr H – and accompanied by the organ and a brass ensemble. Rosie is a Christian, Adrian is an atheist but he is organist for the church. They were both therefore very much at home in that place and conducting the service was Peter, a retired vicar who helped me out with some book research last year. He looks like an ordinary kind of vicar, but is really very eccentric. Really he is the sort of clergyman who ought to be Archbishop of Canterbury or preferably Pope, but being a Humanist I don’t think my opinion counts for much.

We sang the first hymn, which I forget the title of. It was a classic one, familiar but I was too busy moving into position for my reading. At this point I realised that my paternal Grandmother wasn’t there. This saddened me greatly, as she has been very ill in recent months. She was very disappointed that she was unable to bake Rosemary’s cake (Granny has baked and decorated a cake for every notable event within the family as far back as I can remember) and she was worried that she shouldn’t be able to attend. I knew she would be devastated not to have made it and Rosie would be upset too. Then suddenly towards the end of the hymn Granny appeared, not in the wheelchair that had brought her to Andrew’s funeral in May, but hurrying along with a walking stick. Hooray!

Peter the vicar is rather disorganised. Indeed, Adrian once had to conduct a Christmas service when Peter failed to show up. Things began to go a little askew during the wedding when I moved into position for my reading on queue but Peter went on apparently having forgotten me entirely.

Highlights of the actual marriage included Peter asking Rosie if she would take Adrian as her wife, Rosie telling Adrian to “Just shove it on!” when he was struggling with the ring, Rosie drawing blood from Adrian when, engrossed in reading her vows, she mistook the base of his finger for his knuckle and both Rosie and Adrian whispering “She’s behind you!” when Peter became confused as to the whereabouts of his former curate, Camilla, who was waiting to give the blessing.

I thought it was a nice touch that we were asked, not only whether or not we knew of any just cause or impediment but also whether or not we would support R & A’s marriage and help them in their future together. We had to chorus “We Will” in reply.

At some point (I was sat waiting at the front of the church facing the congregation for some time, thank God I wasn’t stood up!) I got to do my reading. It was a new translation of that famous bit from Paul’s letters to the Corinthians, by Rosie and Adrian’s friend Charles, another retired vicar:

I may speak all the languages of earth and heaven, but if I have no love in my heart, it’s just like the old religions with the din and noise of gong and cymbal. I may be a ‘Man of God’ and be able to understand and explain all the wonders and secrets of God’s way; I may trust in God with all my heart, trust him as Jesus told us to trust him; but if I have no love in my heart, all this is worthless.

I may give everything I’ve got to feed hungry people; I may be branded as a slave for what I believe, but if I have no love in my heart, I get nothing at all out of it.

This is what love is like. Love is never in a hurry, and it’s always kindness itself. It doesn’t envy anybody at all; it never boasts about itself. It’s never snobbish or rude or selfish. It doesn’t keep on talking about the wrong things other people do; remembering the good things is happiness enough. It’s tough – it can face anything. And it never loses trust in God, or in men and women; it never loses hope and never gives in.

Love holds good – everywhere, for everybody, forever. See that you put love first.

The choir sang another song (I was glad) while they signed the register. My mother looked particularly fetching in a dress from Monsoon – my Mum is about the least fashion-conscious, no-nonsense dresser in the land. She almost fell out with her own mother when she wanted to wear plimsols instead of heeled shoes for her own wedding in 1974. However, last Saturday she looked extremely glamorous. I only hope that I will look nearly so good when I am 183.

Rosie and Adrian joined in with the choir while the various witnesses did that bit. There was another reading by Adrian’s Mum (the Shakespeare, Marriage of Minds bit), another hymn or two and another song by the choir, during which Rosie and Adrian exchanged loving gazes. Then we all proceeded back down the aisle to the tune of Handel’s Zadok the Priest which was really incredible – it is a great piece of music, but a choir of perhaps two dozen, an organist and the brass ensemble made it sound like Royal Albert Hall stuff. It was really very powerful.

I must say that I was a little scornful - well scornful isn't quite the word, um, something like scornful but toned down significantly - about Rosie's desire for a bells-and-whistles traditional church wedding but it really did blow me away. I think it helped that everybody involved knew the couple very well - the clergy and the choir were all at the wedding breakfast. It was just lovely.

Much to my surprise I felt tearful with joy for what was happening! Rosie and Adrian are so good together and I love them both very dearly. This hasn't been changed at all by their being married, but the wedding gave us all a chance to celebrate feelings that we have had for a long time. And to be honest, it wouldn't have been the same had they done this much earlier: There's nothing magic about marriage which makes people strong and steadfast. But everyone who knows R & A well has already had a chance to witness that there is a magic between those two people that makes them strong and steadfast and the marriage was a celebration of that.

Hmm, difficult to articulate but what I mean to say is, it was perfect.

Saturday, August 20, 2005


A break from Wedding News to pass on this musical baton from Timmargh. Five songs that I am really into at the moment:

Paint it black – The Rolling Stones
I look inside myself and see my heart is black
I see my red door and it has been painted black
Maybe then I’ll fade away and not have to face the facts
It’s not easy facin’ up when your whole world is black

I get this in my head for about six weeks following each viewing of Full Metal Jacket. So that’s about six weeks on, six weeks off, I guess. It is a very exciting song. The lyric is pretty silly but you can’t have everything.

Fire and Rain – James Taylor
Just yesterday morning they let me know you were gone
Susanne the plans they made put an end to you
I walked out this morning and I wrote down this song
I just can't remember who to send it to

I had forgotten how fantastic this song was until I downloaded it recently and was promptly moved to tears. Beautiful, beautiful song. The guy has a lovely voice as well. Boo hoo. Sob sob.

Through the Barricades – Spandau Ballet
And now I know what they´re are saying
It´s a terrible beauty we´ve made
So we make our love on wasteland
And through the barricades

God, I’m listing Spandau Ballet. Oh come on guys – this was their very best song. Really. It’s not as if I like any of there other songs… much.

Saturday Night – Kaiser Chiefs
P-p-p-pneumothorax is a word that is long
They’re just tryin’ to put the punk back into punctured lung
Pe pe pe panic over party off party on
We are birds of a feather and you can be the fat one

I ought to hate the Kaiser Chiefs and indeed some of the songs on their debut album Employment are truly snore-worthy. But Saturday Night is one of the half dozen of really great ones. I love it. The pneumothorax lyric has to be in competition with the Pistols “Her name was Pauline, she lived in a tree.” (Bodies I think)

Brown-eyed Girl – Van Morrison
Cast my memory back there, Lord
Sometimes I’m overcome thinking about
Making love in the green grass
Behind the stadium with you.

I recently dug this one up for a project for a friend (loading 9 year old daughter’s iPod – my iTunes is now full of McFly and Busted) and remembered how much I loved it. When I was a kid I used to go for long walks on the nearby heath, my route taking me past Foxhall Stadium, home of the Ipswich Witches (speedway). The grass there was very green and at aged thirteen the above was the most erotically charged line in the English language. Do you remember when we used to sing?

Sha la la la la la la la la la la te da
Sha la la la la la la la la la la te da
Sha la la la la la la la la la la te da
Sha la la la la la la la la la la te da and so on and so forth.

The idea is that should you wish to take up the baton, please do so and leave a comment, complete with a link to your blog.

Wedding of the Century - Disability Lessons Learnt

As you all know, my role as a bridesmaid and indeed my very attendance at this wedding was a cause for much anxiety and needed a fair amount of engineering in order to pull off. From this experience I learnt a number of positive and negative lessons. First of all, on the downside…

  • The statement “The church is just over the road from the hotel.” could mean just that or it could mean that between the churchyard and hotel there is an extremely busy road and the church itself stands on a hill such that its base is approximately level with the rooftops of the three-storey hotel. Fortunately with Rosie’s planning (see below), this didn’t have too great an impact at all.
  • Just when you think they’ve got it… My folks’, especially my Dad’s gauge of what I am and am not able to do changes dramatically according to how convenient or not it is for me to be able to do something. Their room was significantly closer to the main event, but when suggesting a swap, Dad insisted there was “nothing to be gained really”. At one point he even suggested wheeling me down steps. “They’re ever-so shallow and it’ll be so much quicker than going the long way round!” Yeah, right.
  • People do seem to feel the need to exaggerate degrees of (other people’s) impairments. One chap present was described by his wife as being in agony. I think I have been in agony once or twice, when I have struggled to remain conscious, certainly unable to move let alone attend a wedding. The fact the guy was in significant pain was enough to provoke my sympathy. Another chap was described as blind. He was not blind – blind folks don’t bother putting magnifying glasses to written information. Again, the fact he was visually impaired was impairment enough – especially when he started flirting with my grandmother.
  • After all these years of pacing and management, I am really little better at it than ever I was. My alcohol-free policy slipped, I wound up leaning on an illicit extra painkiller dose or four.
On the more positive side…

  • Either Rosie had thoroughly briefed everybody present about my situation or else people are not nearly so easily fazed as I imagined. I did not follow Rosie down the aisle, I sat down throughout the hymns, for my reading and for all the photographs and nobody asked a question or made a comment about this. I didn’t even have a sense of getting questioning looks.
  • Rosie is a bloody good organiser. This manifest itself in every detail of the wedding, it was all perfect, but I was particularly grateful for the way it meant that my impairment was accommodated.
  • There are loads of crips about and people do understand. Maybe we are becoming more visible, I don’t know, but there seemed to be a fair proportion of disabled people present, even if they would not all self-identify as such.
  • Wearing a posh frock means that I get approximately twice as many comments about how lovely, pretty or beautiful I look than how well, healthy or better I look. Health-related compliments – for compliments they are supposed to be – are infuriating for a whole number of reasons, least of all that most of the time I know it’s nonsense; I do look ill. And why do hey say that? Is it supposed to make me feel better? The best health-related compliment I received was from my uncle, a GP, who said, “You don’t look nearly so drawn as you used it.” Nice.
  • I may have much to learn from unexpected places. One of my fellow bridesmaids has had a similar condition to my own for about a year now and has mastered a sort of power-napping method of pacing. Fatigue not being my biggest problem, it wouldn't be the be all and end all, but if I could train myself to catch forty-winks at will it would be bloody useful for my daily management.
  • My body produces some wonderfully useful chemicals. By the afternoon of the Wedding day (the event was scheduled for three and we got round to Rosie’s house late morning), I was exhausted and without my TENS machine, quite uncomfortable. During the car journey to the church I noticed my speech slurring. I was hungry and my bladder was doing its nervous trick of needing to evacuate but refusing absolutely to do so (I needed the loo at midday, I was unable to go until about five o’clock). Waiting in the church for the bride, whose horse-drawn carriage had got stuck in traffic, I was feeling cold and generally miserable. Rosie arrives, choir sings Lauda Jerusalem and suddenly I don’t mind at all. Every moment thereon in was an immense pleasure and my reading went just fine.

Wedding of the Century - Introduction

I'm back! I had a great time while away but I have caught the cold that seems to have effected the entire universe, so you'll have to bare with me. I have lots to write about, but it might take me a good few days to get it all down. I also have no photographs to show you but the official ones go on-line sometime in the next week or so and I'll link to them as soon as I can.

Hope everyone is feeling funky and has been enjoying the good weather in my absence.

Friday, August 05, 2005

Wedding News and Crowd Tackling Tactics

Well my bridesmaid's dress is finished, much to my relief. It's not terribly flattering I have to say, but it looks okay - i.e it isn't gaping anywhere and it does up at the back so huzzah and hoorah for that!

I had to go into town and this weekend is the Regatta, so the place is heaving. Following my Anyway, last time I was moaning about this sort of thing and it was suggested that I
  1. Don't stop moving. I have a habit of giving way to everyone and waiting for my path to clear. I am too damn courteous and end up stuck in the same position all day.
  2. Stick to the inside of the pavement, no matter what happens, no matter if someone is coming the other way towards you; don't go near the kerb. Only one stretch of road in Whitby is pedestrianised, but everyone walks in the road anyway. If a car comes along, everyone else can leap to safety, but I am stranded on the road until the next lowered kerb.
  3. Wherever possible, select a person who is heading in the same direction as you and stay behind them. People don't see me because I am low down, so I am constantly saying "Excuse me" and half the time having to repeat it, louder and louder.
  4. Use the horn (beep) on your wheelchair to get folk's attention. See above.
1. I managed up to a point (see 3. below).

2. Was more difficult, because people would stop for me and stand back on the inside of the pavement. When the pavement is narrow, this means I might slip off the kerb. Once one side of the chair is gone, there's no return. There is nothing I can do about people stepping back in this direction, because nine times out of ten it is probably the most sensible thing to do.

3. This worked so long as the person I was tailing didn't stop suddenly to have a conversation or to look at something interesting (even on the middle of the very crowded bridge). One poor chap almost got his legs run into several times and was completely oblivious to my presence behind him. It's not so easy to stop suddenly and I'm much bigger than a person on foot, so I need more stopping room. Unfortunately, these crowds do not give you stopping room; if you leave a gap between you and the person in front, some other person will get in it.

4. This I just haven't got the nerve to do. It's loud and it seems impolite. I know, I'm pathetic.

Fortunately, although the numbers have increased, crowds like today are easier to deal with than the crowds a few weeks ago. Many of these people are young families and even the pensioner consistuent of today's lot seemed more with it and eager to help than the pension-age zombies a few weeks ago. Everyone seemed more alive today, so I managed to manoeuvre some pretty tight places, like the chocolate shop (I bought some chocolates for Irene who helped finish the dress) and the florist (I bought some dark pink Alstro - tigerlillies to me).

I hoped that I once home I wouldn't have to leave the house again until Tuesday, when we're off down South, but then the physiotherapy dept. phoned up and offered me an appointment on Monday afternoon. I am quite nervous about this. I asked for it because I want to do anything I can be doing to improve the condition of my muscles, but I'm kind of nervous that I can make myself understood and I'm not told to start off with a twenty-minute jog every morning.

Thursday, August 04, 2005

The Fate of My Hair - In Your Hands.

This comes up every once in a while. I don't like my hair which currently falls to my waist, but I am nervous of having anything done to it. So instead of pondering on it for weeks, buying hairstyle magazines and boring [...] with these questions only to do nothing about it, I shall put the fate of my hair in your hands. I have added a poll to the side bar (on your right). Please let me know what I should do.
Please note: I do not guarantee that I shall act on the results of this poll. Instead I may ponder on the decision for weeks, buy hairstyle magazines and bore [...] with such questions.

Tuesday, August 02, 2005

Flashbacks to Uranus

My new pills are great. They make me feel funny in the first half hour or so after I take them. Ha ha funny. We watched the 1954 version of War of The Worlds the other night and when at the beginning the narrator was explaining why the Martians decided to come to Earth as opposed to any other planet, and he said, “Uranus was totally uninhabitable.” I was rolling on the floor with tears in my eyes...

However crucially, they don’t knock me out at all. Unless my taking them has coincided with an upturn in my health, I didn't know how well I was. It’s wonderful – I have been writing, writing, writing all weekend, getting completely distracted and contributing essays to the discussions on the Ouch Messageboard, but still making loads of progress with my novel. Having a lot of trouble with flash backing. I need to tell quite a lot of back-story on account of an important character being dead at the beginning of the book (don’t ask) but it is a thriller so I don’t want to distract or bore the reader with things that happened in the past. It is a difficult balance to strike...

The axe-wielding maniac walked slowly towards her. In desperation Suzanne picked up the heaviest book from the shelf - the photo album - and hurled it at the man. It merely bounced off his hulking form, landing on the floor and falling open at a picture of the holiday she had taken with Keith five years ago. They had gone to Majorca and lying on the beach at midnight, the stars above them, the cool waves gently lapping at their toes, he had asked her to marry him.

The axe-wielding maniac paused, distracted by something. Suzanne followed his gaze to the ornaments on the mantelpiece which included the plastic bride and groom from Keith and Suzanne’s wedding cake. They had been married in the early spring, when the snowdrops were in flower. The cake had been a three tier affair trimmed with candy pink ribbons to match the bridesmaid’s dresses.

The axe-wielding maniac turned back to Suzanne and stepped forward. He was almost so close now that he could take her head off with one swing of his silvery axe. Suzanne found that she had retreated to the edge of the rug, the rug upon which she and Keith had made hot sticky love so often throughout their first summer together. If only he was here now! she thought as dark figure of the maniac loomed over her, though on this occasion she would prefer Keith to have his clothes on.

You can see the sort of thing. You’ll be relieved to learn that there are absolutely no characters called Suzanne or Keith or indeed any axe-wielding maniacs in my novel - no way, José! Nor do I write this badly. Honest!

But it is hard working out how much information to include and at what point and how. I know everything there is to know about these characters and events, so I have loss any sense of the minimum a person would need to know in order to believe and understand it all.

Anyway, if I carry on as I have in the last few days, I'm going to be done soon.