Wednesday, 25 February 2009

A picture Paints

I'm still paying the price for the activities of last weekend. Paul and Darren came on Saturday and then on Sunday Polly and I took the boys to the National Gallery in London. There was a free cartooning workshop being run which we thought the boys would like.

It is many years since I've visited the National Gallery and I had forgotten how wonderful it is. While Polly sat in with the boys I was allowed to wander off and enjoy myself browsing some of the worlds greatest art. I have a particular fondness for the impressionists so I was thrilled to find an exhibition of Alfred Sisley's English and Welsh paintings. In addition there is something wonderful about seeing Van Gogh's Sunflowers or Monet's The Water Lily Pond there in front of you. At times it was like being in the Athena catalogue. All that was missing was a tennis player scratching her backside.

We had lunch in the gallery's restaurant which was disconcertingly posh and expensive. You know that sinking feeling you get when you've been shown to a table by a waiter in a smart suit, who has struggled to move a chair out of the way for you, and then presented you the menu with a flourish, and then, only then, do you realise that the cheapest thing on that menu is a single jammy-dodger biscuit at £2.50 each. Fortunately there was a children's menu so the boys were happy. Polly had the soup of the day and I had some cheese. The cheese turned out to be something or a treat. I'd chosen three different kinds of British cow, goat and sheep's cheeses that came with different kinds of exciting biscuits and breads. Polly helped me eat them and we pretended not to notice the couple who decided not to sit next to us.

By the time we got home that evening I was exhausted. The trouble with January and February is that I go for days at a time not doing much. I need the warmer weather so I can get out more and build up my stamina. Roll on Spring.

Monday, 23 February 2009

The Rock God And Bassbin Cometh

It has been very busy weekend. On Saturday Paul and Darren (see previous blogs ad nauseum) pulled the straw from their hair and set off for the big city to visit me. Matty and Sam were delighted and immediately inveigled them in to taking them to the park to play football. The goal posts were occupied so Matty marked out a pitch between two lots of trees. As a result the four of them ended up having a two-aside match on a pitch roughly the size of Wembley. Both of my friends children are well past the age of going for a kick around in the local park so they were out of practice, and by 3 – 3 were well out of breath as well. With them wheezing and a disturbing shade of red we moved on to the park café where the boys assured Paul that Mummy always lets them have double scoops of chocolate ice cream.

Later, after they had recovered, Polly casually mentioned she was thinking of moving a couple of things around in the living room. Like the gentlemen they are, Paul and Darren offered to help. It was at this point they learned that the small task entailed moving a sideboard and two fully laden bookcases double lined with books. Oh, and a fish tank.

No wonder the guys were grateful to sit down to a meal of Polly's beef stew with cheesy dumplings and mashed potato. It was the least we could offer them after their sterling efforts. Matty and Sam can't wait for them to come again. Matty reckons that if he asks Paul nicely he can be persuaded to buy him a motorbike and Sam's holding out for a tattoo. I was sad to see them leave, not least because I always feel safer knowing exactly where they are.

'Til next time, guys.

Saturday, 21 February 2009

Hand Fed

Yesterday afternoon I went to the cinema with my friend Stewart. We went to see Push, a film about group of people with 'special' abilities, including telekinesis, psychometry and seeing into the future (precognition). I hadn't seen any publicity about the film so didn't know what to expect. What we got was cleverly plotted, well acted (Dakota Fanning is especially good), and confusingly exciting story with some great set-piece special-effects. The film ends on a cliffhanger so I presume a sequel is on the Zener cards.

After the film was over, Stewart and I went to get a burger and have a chat. We ended up in Burger King where we both ordered Bacon Double Cheese Burgers. I tell you this mind numbingly banal detail because of what happened next. Try as I might I was unable to raise the burger to my mouth. I had chosen the Bacon Double Cheese Burger because it is not stuffed full of lettuce, tomato and various drippy, sticky sauces destined to fall out of the burger and down my jumper. Even so it remained resolutely unpickupable, let alone eatable. I tried a French-fry instead. By pushing my right elbow awkwardly into the corner of the table and twisting by body like an arthritic contortionist I managed to get the tip of the longest one between my lips and was able to suck it into my mouth like a strand of chippy spaghetti. So far so good; 1 French-fry = 1 minute. It was a good job Burger King stays open 'til late.

Fortunately Stewart understood my predicament and casually offered to help. Torn between the humiliation of being fed in public and going hungry I went with humiliation. Pride goes out the door when you've skipped lunch. Stewart held up the burger while I nibbled at it like a donkey at a petting zoo.

In case you think I'm wallowing self pity I'd like to say in my defence that this was the first time I'd been fed in public by anyone other than Polly. It couldn't have happened with a nicer person than Stewart who acted as if it were the most natural thing in the world to hand feed your friend in a public restaurant, but it does mark yet another stepping stone in the deterioration of my condition. On the plus side, I didn't go hungry and nobody in Burger King objected or even appeared to notice.

So, thanks Stewart.

Wednesday, 18 February 2009

A Rose By Any Other Name

The problem with going to a hospital you have never been to before is knowing how long it is going to take to get there, park and find the right clinic among the maze of corridors and waiting areas. For this reason we arrived for my appointment with a consultant neurologist at King's hospital muscle clinic fully an hour early. Polly and myself, with the boys in tow, settled down in the on-site café to kill time drinking coffee and playing Mario on Nintendo DS's.

My heart sank as sometime later we found the waiting area for the clinic packed with people and with a red L.E.D. sign flashing a message apologising for the delay. My appointment was for 11.30am but judging by the number of people waiting I'd be lucky to be seen before lunchtime. However, just as I was settling down to my book, and bang on 11.30, a doctor appeared and called my name, beckoning us all to follow him in to a consulting room.

Dr Rose had black thinning hair, a dark suit and a hearing aid. The hearing aid is significant because Dr Rose lip reads. Trying to lip read someone with Facioscapulohumeral Muscular Dystrophy presents a degree of difficulty for even the most accomplished reader of lips. Fortunately Polly was there to translate/interpret for him and the consultation proceeded smoothly. Dr Rose heads up a team of specialists in muscle conditions, including physio and speech therapists and a palliative care expert. Happily I will now have access to these people.

Often, in the past, I've been seen by consultants who have looked at me as something of a curiosity because of the relative rarity of my condition. It was a relief to see a doctor who is thoroughly versed in the ins and outs of FSH MD. In addition he has promised to wholeheartedly support our application to be rehoused and find funding for the robotic arm device. I have a follow up appointment with Dr Rose in 3 months time to see how I've got on with his team.

Tomorrow we have a meeting with the district nurse. Let's hope we make the same kind of progress.

Tuesday, 17 February 2009

Wee Or Walk

Sam, as was previously mentioned in the last post, has been diagnosed with a urinary infection and put on a course of antibiotics. I'm glad to report that he is much better. However, at the time of the diagnosis, when he felt quite ill, he gave his condition some consideration.

“Not being able to walk,” he told his mother, with a nod towards me, “is this bad.” He held up his thumb and forefinger an inch apart. He then increased the gap between digits by at least double. “A urinary infection is this bad.”

To be fair, I can't walk and at times I've had urinary tract infections. I think I agree with Sam.

Tomorrow I'm off to Kings Hospital to see a neurologist who specialises in neuro-muscular conditions. I'm expecting nothing less than a cure.

Sunday, 15 February 2009

It Must Be Love

It was, as you know, Valentines day yesterday and I had remembered. I had arranged delivery of a rather beautiful orchid for Polly and also a book she very much wants to read. (The Shack by William P Young.) So, all in all, brownie points were accrued.

In the afternoon Polly took the boys over to my brother's house to see a litter of puppies with firm instructions not to bring one back. The puppies' mother, Billy-Whiz (named by the boys' cousin, Oscar, after the Beano character) had had seven. Despite ineffable cuteness, Polly managed to resist their furry four-pawed charm, though she admits it was a very close call. Fortunately all seven had been found homes or, I suspect, I would be writing this whilst trying to stop a yapping thing cocking its leg on my back wheel.

We had cancelled the evening care so I could stay up late like a proper grown up and Polly and I could have a quiet meal together sans children. We had a couple glasses of something, a Marks & Spencer ready meal (at this point Polly would like to make it clear that she is perfectly capable of cooking a romantic meal for two from scratch but the idea was to make it easy) and watched some comedy. We have been together for 17 years all told. Things have not been easy recently as we have had to deal with changes in my condition. Tonight was our night. I love her so much. We gazed fondly at each other. And I knew, as I looked deep in to her lovely green brown eyes, that... .

We were not alone. A bleary eyed and teary Sam stood in the doorway. Even at a glance you could see he wasn't well. He was drenched in sweat and flushed red. Romance was no longer on the cards.

Sam spent most of the night in our bed. First thing this morning Polly took him to the walk-in clinic at St Georges where he has been diagnosed with a urinary infection and put on a course of antibiotics and given a follow up appointment for Friday.

As I write this he is sat watching television and looking perfectly well. Meanwhile Polly has taken Matty on an 'extreme' survival course at the local environmental centre to learn how to light fires and live off the land. Polly, as she pulled on her coat, said she felt being a parent was enough of an extreme survival course. Maybe they'll let her build a bivouac to curl up in and catch up on some sleep.

At least she doesn't have to walk the dog.

Friday, 13 February 2009

Hot-Dog!

“I'm popping out to the shops and I've got to buy a train ticket,” said Polly casually. “Do you want to come?” I hadn't been out for a while so I said yes. “Oh good,” she continued. “The parking is terrible at the station.”

Eventually, after I'd legitimized Blue Badge parking outside the station, we ended up at Polly's favourite secular cathedral, Ikea. Faced with the choice of the restaurant or grabbing a quick hot-dog, I was left to decide while Polly went to find a Zulgag or bag of some kind. Aware of time constraints I decided on the quick hot-dog. When Polly returned, triumphantly clutching her haul, I detected a slight disapproval at my dining choice, but was unsure why. I had been given the “no, no you decide, I really don't mind” authority to make the choice, so I was puzzled by her reaction (as usual). Minutes later I understood.

The tables around the Ikea in-house hot-dog stand were without chairs. Polly was left to eat standing up while I was the only one in the whole area with a seat. Truth be told, I hadn't even noticed the absence of seating. I imagine it must be the wheelchair equivalent of the able-bodied person failing to register the flight of steps into a building. The less things matter to you the less likely you are to notice them. Mea culpa.

Tuesday, 10 February 2009

Guest Blog by Paul 'Rock God' Loader

For the first time ever How To Be An Inspiration has a guest blogger. Paul 'Rock God' Loader, wrote to me, and showing uncharacteristic sensitivity, asked me if I would approve a post he had penned for his own (highly enjoyable) blog How To Be A Bonafide Rock God. Paul has been mentioned in this blog on many occasions because he, along with Darren 'Bassbin' Williams, is one of my oldest friends. His post, as you will read, is about his childhood perceptions of me. It seemed silly not to steal the post and put it here.


The opinions and memories are Paul's but they generally accord with my own. Perhaps after reading it you will understand a little of why he remains, after some 40 years, one of my most cherished friends. I've inserted a few comments along the way for clarifications sake, but otherwise, in his own occasionally eccentric syntax (God, I'm a patronizing git), here is the stuff memories are made of...


The Adventures of 'Wheelchair Man' and his trusty sidekicks 'The Preachers Kid' & 'Bassbin'

I wonder if you might allow me a small indulgence, and let me write about something that has absolutely nothing to do with music.


I was inspired to begin writing this blog by a very good friend of mine, Stephen, who goes under the blog name of ‘Quicksketch’.


Now I know that there are a fair few of you that read my simple scribblings because they stumbled across Stephen’s blog “How to be an inspiration” first.


For those that don’t know Steve’s blog is about the day to day frustrations, joys and restrictions of suffering with a degenerative condition called Muscular Dystrophy.


However, Steve is by no means a ‘moaner’ (his wife Polly of course reserves the right to disagree with this entirely) and his blog is often down right hilarious and I would heartily recommend it to you.


However, my point for writing about Steve is this, the blog is essentially about his condition and the day to day struggle he has to endure. However for myself and my good buddy Bassbin (Darren) we still don’t see the wheelchair, and the hassle that Steve has to endure to even eat and sleep these days.


We still see the child, teenager and young man that grew up with us. Dignified, funny, good natured, thoughtful and a good friend.


When I was 9 years old, my father upped the family, dragging us kicking and screaming away from friends, school and familiar surroundings and moved us to a house closer to the church where he was pastor.


In this myself and my siblings had to go to a new school and I was introduced to my new class mates. Two lads in particular were given the task of integrating the newbie. Darren and Steve.


Now I’m not quite sure why those two were particularly chosen for this task, maybe it was thought that they would be the least likely to make this new kid cry. Perhaps it was felt that they would be the least likely to lead me into ‘Disaster’.


Either way, but for a twist of fate, my new best friends could have been Ricky Hartree and Andrew Scully. I don’t know what my future would have held, but I certainly would have been in the company of more girls that was for sure.


However, at the same point in history, when Man first set foot on the moon, I made two new friends that would help to sculpt my life, and I believe they did it in a very positive way indeed.


As with all of us in those days, both boys, like me, were skinny and scruffy and full of life.


I can’t remember at what point it was mentioned that Steve has Muscular Dystrophy, but I believe it was almost immediately. No big deal was made, I didn’t have a clue what it was for Pete sake, and to be honest it didn’t really matter. I was now being initiated into the ‘Whitchurch Wanders’ and a total acceptance of the MD and Steve as a founding member of that tribe was a prerequisite to belonging and his condition was virtually never mentioned again until relatively recently.


It wasn’t that it was ignored, as if a shameful thing was being suppressed and buried, it just never factored.


Steve’s dad, Roger, held a place of power and place in our young lives. He was the leader of the local ‘Cub scout’ group, of which all three of us became members. He went under the moniker of ‘Arkala’ and he scared the crap out of myself and Darren. However, he held an immense amount of respect from both of us, and I believe, from what has been revealed to us later, he was rather fond of us.


This is true. Dad genuinely like both of them and was amused by their antics. I think he was glad I had fallen in with 'good lads'. Even when they were well into their 30`s, with families of their own, if they arrived at the house he would greet them with “Ah, the “young people” are here.” They would snap back in unison with “Arkala, we will do our best.”


The Cubs were and I suppose are, a great institution. Although it was a hell of a lot more fun back in the days before the oppression of health & safety had got a hold of us. We got taught to light fires, use knives, sleep in DIY shelters and got told stories in gory detail of what can happen if you do stupid things with your sheaf knife.


Roger, like two of his sons, also had the condition Muscular Dystrophy, so he probably knew more about was in store for his lads than perhaps they did. As far as I can remember though he didn’t do his oldest boy any special favours, Steve was treated like the rest of us, although I do remember more badges appearing on Steve’s uniform than Darren and I could both muster together. If I remember rightly there were a few grumblings of ‘fix’ being banded about.


This is laughable. If anything Dad made it harder for me to earn badges. I got more simply because I was a little boy who wanted to please his father.


However, as with all of our dealings with Steve, the suggestion that he might have been given a break because of his MD didn’t even occur to us (the fact that he has always applied himself a bit more enthusiastically also didn’t occur to us either and that he had simply ‘earned’ more badges than us).


It was during these heady days of cubs that Steve’s condition did start to become more apparent and also evidence of its debilitating effects on him became more noticeable. It was during the ‘swimming badge’ that Steve was unable to perform all the tasks set for him (neither could I, so it didn’t really seem to matter). However for Steve, it wasn’t matter of ability, he physically couldn’t do.


But again, Darren’s and my attitude was ‘Hey ho…no worries’.


It was at this point Darren and I began to show early signs that we could make complete idiots of ourselves when the occasion required, usually with Steve standing behind us shaking his head in despair. We both nearly got sent home from a cub camp when we got ourselves into a full blown fist fight over…..a woggle!! (that’s the thing that you tied your neckerchief up with incidentally). Don’t ask me what it was about, but I remember that it was pretty heated.


These heady days continued until I was asked to leave on account that I was now the oldest cub in Bristol, and a full year older than I was supposed to be. I didn’t last very long in scouts (I don’t think that Darren and Steve even got that far… the cubs were our moment of glory).


When we reached the age of 11 or 12 (I was a full 10 months older than the other two so I have always been considered ‘the old man’ of the out fit. Great when you are 12….pants when you are in your 40’s.) we were introduced to our new secondary school, Hartcliffe Comprehensive School, the most frightening institution on God’s green Earth.


Hartcliffe at that time was one of the biggest schools in the country and it certainly had one of the worst reputations for brutality…both from students and staff.


Steve’s ability to move had begun to slow somewhat, but it didn’t matter, we all walked slower in way of unmentioned, unsolicited compensation (some habits die hard I have discovered). His facial expressions also began to suggest that the muscles weren’t as strong as they used to be. However, we all looked liked train wrecks from Pizza Hut in those days so it didn’t matter.


Steve’s recollection may be better than mine, but I don’t recollect him getting a particularly hard time from the other kids, which is remarkable given the age of the kids that were repulsed by even the slightest of differences.


He may have been getting some stick but to be honest I was too busy wrapped up in my own misery. As I said, my father was pastor of the local church and he used to come into our school to take our assemblies. This was like manna from heaven for my class mates in terms of Mickey taking. I would be followed around by groups of kids, monk like in mock prayer as they trailed ‘The preacher’s kid’ around the play ground.


I cannot illustrate how painful and humiliating that was for me, which is daft considering as I look back on it now most of the kids were very fond of my dad, and I have since become extremely proud of the nickname ‘The preachers kid’. Strange how we grow.


As with all our journey together, Steve was not offered any special dispensation by his growing army of mates, although instinctive allowances were made for Steve’s reducing physical prowess, however, to draw attention to it would have been tantamount to an insult.


However, some of the staff weren’t quite so open minded when it came to being over protective of the ‘disabled boy’.


Mr Owen was a maths teacher, and I believe he was a ruddy psychopath. Even the staff were terrified of him.


I remember making the stupid mistake of treating Steve like any other kid in one of Owen’s lessons. I leant over a desk and cuffed Steve around the back of the head (that’s the sort of things mates do to each ….it’s a male thing apparently).


I had not realised that my ‘torturous act upon this helpless young cripple’ had been observed by the Ogre of class 4B and with a roar of fury he launched himself across the classroom towards me. I was wrenched from seat by my jacket lapels, and had to suffer a torrent of venomous abuse on the subject of being unkind to those less fortunate than ourselves, and then unceremoniously I was flung across three or four desks to crash into a crumbled heap in the corner of the room.


Steve simply wet himself laughing.


I did not! Urinary incontinence wasn't a problem until much later.


Steve and I did suffer at the hands of a couple of Neanderthal thugs who managed to sit with us in our science class. However, our pleas for assistance to our form tutor (something they encourage children to do nowadays), was met with “You are bigger than then…..beat them up”. I was “The Preachers Kid” I didn’t do ‘beating up’, and even back then Steve was becoming a man of learning and not a boxer.


Still, I suppose the only satisfaction I can muster is the pair of them are probably due for parole at some point in the near future (not a very Christian day dream I grant you….but stuff it!).


Actually we did deal with them eventually. Their particular form of bullying was mostly to subject us to a stream of obscene verbal abuse. One day we simply asked them to explain exactly what each word meant. They got a bit fed up of having to describe various deviant practises in minute detail, especially when they realised they didn't understand them themselves.


For those of you who have been reading this blog regularly, you will already be aware of what happened when Steve, myself and Darren first began to dabble in music with my blog “My tone deaf mate”.


By the time we reached the sixth form (before, both Darren and I were asked to leave), Steve had begun to circulate in a more learned circle than that offered by Darren and myself (we only had ourselves to blame really, the draw of listening to the Sex Pistols at Darren’s house had a greater draw than attending English Literature lessons I can tell you).


So by 1979 we began to go our separate ways as Darren and I got our first jobs and I had the opportunity to travel a bit with a band, and Steve eventually went off to London to University, became a successful and talented playwright. Co-wrote a best selling no 1 record, got married and had kids.


We never really lost contact, however it has really been more in the last few years that we ‘picked up where we left off’.


The reason for my walk down memory lane is this. I have worked with disabled people from time to time during my working life, and I found this to be hard work, and often rewarding, I have even occasionally found it to be an honour.


However, I have never seen Steve in that light.


I can honestly say that as hard as it has become for him in recent years I still do not see the wheel chair.


To me he is a mate, pure and simple. A good mate who has helped put several huge dollops of paint onto the canvas of my life. A mate that has succeeded in life and has contributed to the arena that he travelled in.


He married a beautiful (and patient) women and they have two very lively, intelligent boys that do their parents proud.


Steve was and is far more than that ‘disabled boy’ that refused to get drawn into the ‘ah, bless him’ space (no matter how hard our mothers tried)


I suppose what I am trying to say is, the next time you run into somebody who is being pushed along in the wheelchair……don’t just see the chair…there is a history sat there. A history of a vibrant human being…that has mates…like me and Bassbin... just try to resist the temptation to cuff him around the back of the head… Mr Owen could be near by.

Monday, 9 February 2009

I, Robot

video


I've just had a very interesting experience. A little while ago I was very disparaging about a device called the Neater Eater, a mechanism that spoon feeds disabled people food at the table. (I think I said I'd rather starve than use it.) However further investigation of the company's other products revealed a more promising prospect, the Neater Arm.

A motor drives an exo-skeletal arm which in turn supports a muscle weakened arm like mine. The idea of the device is that it is fixed to an electric wheelchair and thus powered by its battery. This afternoon a rep bought a demonstra4ion model for me to try. This one was free standing rather than attached to my chair but it gave me an idea of what it might enable me to do. For a start I could lift a mug from the table and raise a fork to my mouth, something I have been unable to do for a while.

I have attempted to attach a video of the trial to this post. It is about 90 seconds long, with no sound, but it is also at the limit of my technological know how, so apologies if it doesn't work. I made it so the OT would understand what I was talking about and why I want to raise £2,934 ($4,380) to pay for it. That's a lot of money, but when the alternative is to have someone spoon feed you, I think it's worth the effort.

My plan is to upgrade the motor so I can lift boulders or small cars to throw at baddies. Wheelchair Man will live at last! (Don't tell the OT, superhero funding comes out of another departmental budget.)

Saturday, 7 February 2009

25 Random Things About Me

My friend Sheryl tagged me in one of those interminable things that float around social networking sites like Facebook. Usually such things involve 'poking' and 'hugging' and sending each other plants or snowballs or beer and I don't understand them so I have a backlog of several hundred because I don't know how to stop them and I don't want to offend anyone. This one seemed fairly straightforward though, and I like Sheryl, so I did it. I simply had to write 25 random things about me. So I did. Then I realised I could post them here as well. So I did. Here they are.

25 Random Things About Me

1.
My middle name is Harry.

2.
I once had a Red Setter called Lara

3.
I went to Hartcliffe Comprehensive School.

4.
I drink coffee. Roasted coffee beans are my favourite smell.

5.
I have 2 Ivor Novello awards.

6.
I have FSH Muscular Dystrophy.

7.
I read a lot of books.

8.
I hate rhubarb and gooseberries.

9.
I can't stand getting cold.

10.
I write a blog called How To Be An Inspiration.

11.
My first girlfriend was Elaine Wentworth. We were five and it lasted over two years.

12.
My first love was... someone else.

13.
I used to be very good at making bread.

14.
Kirsty MacColl was the best.

15.
I won a silver teaspoon in a beautiful baby competition.

16.
I rank in the top 2% of the nation at General Knowledge (according to the BBC's Test the Nation).

17.
I would love to see a whale.

18.
My favourite author is Christopher Brookmyre.

19.
My first car was a red Mini reg KY55C.

20.
As a boy my favourite comic was called The Sparky.

21.
I could never do the Rubiks Cube although I was among the first to have one in the country.

22.
I love superhero comics.

23.
I tell my children Wheelchair Man bedtime stories.

24.
My first memory is of sitting in my highchair in the kitchen of 3 Krispin Way, Bristol. There were fruit and vegetables on the wallpaper.

25.
My favourite confectionery is Turkish Delight.

If you would like to comment on this post please accompany it with at least 3 random things about you!

Friday, 6 February 2009

Good Form

Just a very short post today. The snow is slowly melting here but the entire area is an ice-rink with ice an inch thick on some surfaces. As a result I am effectively trapped inside, as I have been all week. I'm not exactly going stir-crazy yet, but I have decided it is probably not a good time to re-read The Shining.

Earlier today Polly took the bus into Sutton (our road is still pretty icy and she didn't want to risk the car) to hand in a very important form to the council offices. We are applying to move house. The form justifies our need for rehousing in obsessively minute detail, from the goldfish need a bigger bowl to the children need a bigger bowl . . . er, room. We have been very happy where we are for the last nine years but we simply need more space. At the moment we don't have a spare room so we can't have night time respite care, which is beginning to look like it will be a necessity at some point. We want to address the situation before it becomes critical and Polly goes mad from lack of sleep from disturbed nights.

We intend to stay in the immediate area. The boys are very happy at the school they attend and we have many good friends in the area that we would not want to lose. So, we've started the process, I'll keep you informed of our progress. Would anyone like to guess how long it will take?

Wednesday, 4 February 2009

Snow!

The last few days have seen the country under a blanket of snow. Obviously if you live in the UK you are well aware of this. If you live outside of the UK you have probably been laughing helplessly at how a few inches of white, fluffy stuff can bring a city the size of London to a halt. Six inches of snow in many cities would barely count as a light dusting. Here buses failed to run, roads became ski runs, stations froze and schools closed. Pathetic. Or is it?

The last time London had so much snow in such a short period of time was 18 years ago. I'm sure it's perfectly possible for us to be totally ready for the next blizzard. We could install under-road heating, have snow ploughs and gritters on every corner, import salt from wherever you import salt from to cover every pavement throughout the winter, and employ people with little hammers to break up any ice that forms. It shouldn't add more than a few thousand pounds to everybody's council tax. Or we could face the fact that it's going to happen once in a while and grin and bare a couple of days of disruption once in a blue moon.

My boys spent their unexpected days off school playing with friends, sledging and having snowball fights. With snow a relative rarity in London I'm sure these last few days will stay with them forever. A couple of days off school is a small price to pay for priceless memories.

People keep asking me how I'm coping with the snow. Truth be told, I've stayed inside. Snow and wheelchairs don't mix well. Besides, it's cold, and I hate the cold. It's pretty though.

On another matter entirely, Polly has engaged in a new (previously) secret project. How many times can she get her name in print this year. So far she's made the local paper, commenting on changes to flight paths to Heathrow airport. Then she appears in the Lakeland catalogue, endorsing a heated clothes dryer. Now she has won £50 worth of vouchers in a draw rewarding people providing feedback for council services. They want a picture for another local paper of her collecting them. It gives her something to do.

Monday, 2 February 2009

The Holy Handkerchief

You will probably have surmised by now that I have a certain degree of cynicism regarding the whole spiritual healing malarkey. (A hint may be me using words like malarkey.) Why, you may be wondering, have I dedicated some 5000 words to the subject?


A few weeks ago I received an email from Barefoot Brian telling of an experience he had had at a meeting in Dudley (in the UK). Brian had been at a meeting led by speaker Marc Dupont, a guy who had been heavily involved with the whole Toronto Blessing phenomena of a few years back. During the course of the meeting Brian felt strongly led to pray for me and get a piece of cloth blessed for me with healing in mind. As it happened Brian had a clean hanky on him and after a bit of 'should he, shouldn't he`, he succeeded in tracking down Marc Dupont and (in Brian's telling) virtually forced the poor, exhausted man to pray over it. He wrote to ask me if I would receive this 'holy hanky` in the spirit it was intended, and asked “Do you want to be healed?”


As you might imagine this left me with something of a dilemma. You now know my history (or some of it) with such things and the idea of a 'prayer handkerchief`, particularly the light of the Duane Falcello monologue, made me smile. However, I like and respect Brian. I'm known him for 30 years, from a time when we both helped run Christian youth camps at Hill House in Somerset. Although on the charismatic/evangelical wing of the church, Brian falls well within the bell-curve of normality for Christians as a whole, and is someone whose judgement I'd trust. So first, let's answer the question he asked: do I want to be healed?


Yes. Not because I don't value who I am, or appreciate how my disability has shaped my personality and what I've done and achieved in my life. I don't wish I'd never been born with Muscular Dystrophy because without it I would never have done the things I've done, met the people I've met, or had the children I've had. Dystrophy has been both a curse and a blessing for me But if someone (God?) could snap their cosmic fingers and relieve me of its burden, restoring the strength to my limbs, I'd forsake the advantages of a Blue Badge in a second. I'm tired of being tired, tired of aching and tired of feeling helpless to stop the further slide in my condition. So yes, I'd like very much to be healed. That said...


Do I believe God can heal me? Short answer: no. Longer answer: may be, it depends what you mean by healed.


Do I believe that an entity capable of creating a universe, establishing the laws of physics so that M=MC2, micro-manages his creation to such an extent that he would physically alter my DNA to bring about a cure for a congenital condition? And that if he did, he would focus his attention on me, rather than the countless other suffering souls in his creation? Would a supreme being, who could with a mere thought banish the spectre of, say, AIDS from the planet by making a minute alteration to a simple virus, rather turn his attention on me, a relatively wealthy (compared to many on this planet) individual. What kind of ego would I need to believe that? But supposing he did. Suppose this omniscient being healed me, would that be a sign of love or a slap in the face for the countless millions of faithful Christians who, through out the ages, prayed for similar blessings and not been heard? Why me and not them? Would God be so arbitrary?


I have a friend, Karen, who I've mentioned in this blog before, and to whom I owe a great debt, for it was she who introduced me to Polly, all those years ago. Karen, and her husband Gareth, have three children, the youngest, Tristan, was born within a couple of weeks of my eldest, Matty. Tristan, for no apparent reason, was born devastatingly handicapped. At nearly 9 years old he can not feed himself, nor sit unsupported. He will never walk and will forever be utterly dependent on those who love him. Fortunately there are many who do. Tristan is a beautiful boy. He has black hair and amazing eyes with lashes to die for. He sits engrossed for hours with something as simple as a tiny red plastic tennis racket. When I last saw him he was entranced with the lights on the controller of my wheelchair, gurgling with happiness when I made them flash. How could I expect God to heal me and not Tristan? And if he does, then what about my brother, or Blake or Dani or many others reading this? Why should God heal one but leave others untouched? Surely if God has the power to heal then no amount of theological sophistry can justify him healing me over Tristan, hankies not withstanding.


So Brian has wasted his time and his neatly folded square of cotton. Or has he? The first consequence of Brian's act of faith has been this series of posts, and the thousands of people who have read them and been inspired to consider their position on the subject. I, myself, have been forced to think about things I'd long ago put aside. What about the testimony of those with tales of divine healing, what am I to make of those? Rock God's mothers prayer for the healing of a blind friend? Tigger35's experience with autism? And many others known to us individually. The problem, as I see it, is that anecdotal evidence is not truly evidence, however sincere the source. Many of us have heard stories of miraculous healing that defy rational explanation often from impeccable sources. Unfortunately none of them are absolutely verifiable. I've looked for a verifiable account of a miracle healing of a genetic condition like Muscular Dystrophy, believe me, I've looked. It has NEVER happened. If you show me one accredited account, I'll show you a thousand doctors and scientists who doubt it.


But who is to say God has to act in a supernatural manner? If not for the 'miracle' of Penicillin and its anti-bacterial descendants I would long ago have died of pneumonia. Even as I write this I am looking at technological solutions to some of the problems I'm having. The probability is that with the right help my life can be greatly enhanced. Brian and his hanky have directly inspired me to talk openly and frankly about spiritual matters both online and in real life. I've had to confront some uncomfortable truths regarding my relationship with a deity who it sometimes seems to have abandoned me. (Or me him. We're still arguing about the details.)


I have just learned that Brian himself has very recently gone through a serious medical emergency requiring your actual brain surgery. He reports that he is well on the mend I'm glad to say. Did God heal Brian? Well he didn't wag his celestial finger and dissolve the subdural haematoma. Rather Brian was able to access the more statistically reliable NHS and have high quality non-supernatural treatment. Does this mean God was nowhere in this situation? Of course not. Brian, I imagine, credits God with putting all the, doctors, nurses, CT scan operators, and so on in place. And I can not dismiss this as a possibility. It truly is a matter of faith.


By now all my Christian friends, of whom I have many, are sadly rubbing my name out of the Book of Life. But wait! Put away your metaphorical erasures and read on.


I can not quite write God out of my life for one reason. I know his people. For 35 years the church has been part of my life. And despite the odd Morris and strange person who insists on accosting me in public and laying hands on me, they are for the greatest part, wonderful people. Many of the best, most exciting things I've done in my life have been done with, or facilitated by, my brothers and sisters in the church. When I have been at my lowest or sickest, alongside my immediate family, it is my Church family that has been with me. At a time when I hovered between life and death I know that thousands of Christians held me in their thoughts and prayers. The church has often employed me, frequently to poke gentle fun at its beliefs and rituals. And even when the logistics have been massively complicated by inviting me a long, Christian organisations have still taken me to every corner of the country, from Shetland to the Channel Islands.


While I make no claim that Christians have a monopoly on caring, it is my experience that those I know are among the kindest and must loving people you could wish to meet. If the church is the body of Christ then it is my opinion that Christ is worth knowing. While I have reservations about some kind divine plan, that one day will be revealed to me, I make no pretence to understand the mind of God. May be there is a plan. It seems unlikely on the evidence I've observed and experienced but if there is it had better be one heck of a good one to justify all that has gone on. But I'll let others worry about that.


So, to Brian and all my Christian friends, thank you. Thank you for praying and for caring. The very fact you do so gives me hope and lightens the load. And for those reading who take no comfort in divine providence, all I can suggest is that you, like me, look to your friends, your neighbours and your families for that divine spark.


In the meantime, the hanky is in my medicine box. Make of that what you will.


That's the end of this series of posts. Thank you for reading. Comments and discussion welcome. Good bye and keep warm.