The Right Move

Regular readers of Quicksketch’s ‘How to be an inspiration’ blog may be familiar with a couple of lads that shared his childhood with him. May I introduce my self as being one of those two boys and I go under the blog moniker of ‘Rock God’ although the name that my mother gave me was Paul.
 
I imagine that many of you have become concerned that Quicksketch or ‘Stephen’ as his mother likes to refer to him when he’s in the dog house has not put pen to internet paper for over 8 months now and you may by now be thinking the worst.
 
Can I right from the very outset reassure you that Stephen is still very much with us and has plenty of stories yet to tell.
 
However; as you will undoubtedly be aware from this blog Stephen’s condition has begun taking a more aggressive toll on his ability to undertake many of the day to day tasks that most us take for granted. This sadly includes Stephen’s ability to write.
 
Although with the aid of an Ipad and a stylus he is still able to correspond in way of e-mail, the time it would take to construct this blog would be prohibitive as well as exhausting. Although his creative mind is as sharp and witty as ever his physical prowess is now considerably limited to short e-mail sentences.
 
Stephen’s writing style also prevents him from just kicking back and reciting his beloved words of knowledge as he likes to see the written word unravel in front of him. Well, that’s his excuse any way. Personally I can well see him reclining in his boudoir, sipping champagne and nibbling on the occasional goat hoof whilst pontificating words of wisdom to a bespectacled sycophant.
 
This being said it was brought to Stephen’s attention that his loyal readers were already in a state of withdrawal and that all those that don’t know him personally might begin to suspect that he may have gone and fallen off this mortal coil.
 
And so finally he allowed me the privilege of penning a few short words just to keep you loyal readers informed of the proceedings in the lives of the Quicksketch family.
 
The biggest piece of news is that the council of ‘wherever’ have finally got their oversized thumbs out of their collective rear ends and have granted the family new housing.
 
By new housing I mean a brand spanking new three bedroom house that is specifically equipped for the disabled including proper hoists and a lift that will allow Stephen the luxury of going upstairs to bed (myself and fellow childhood friend Darren spent a happy afternoon going up and down in this I can assure you, although we were informed by Stephen’s wife that the majority of those that had enjoyed this experience thus were actually children).
 
The house has a brand new purpose built kitchen with work tops at a lower level so that Stephen if he is inclined can actually reach things (their previous kitchen work tops were so high I had to step on tip toe and I am nearly six foot tall).
 
There are two bathrooms that will afford both Stephen and Polly the luxury (my wife would site this as a necessity) of having a long soak in a bath. It also means that Polly and the boys will be able to get themselves ready at the same time as Stephen and he will no longer have to wait until they are done with their ablutions.
 
The best part of the house is a large living room that has a magnificent view of their new garden. Yes, QS will be able to sit and enjoy the grounds of his very own estate.
 
This family have never asked for anything from anybody. Both Stephen and Polly have worked hard all their adult lives and continue to do so. They have paid their taxes and have never expected or asked for hand outs. Personally I think it is a disgrace that they have had to wait for so long for the one thing that they have needed a bit of a hand with and they certainly didn’t ask for anything that millions of people in the UK take for granted. But that noise is just me falling off of my soap box again.
 
Anyway, Darren and I were well excited with the new family dwelling and we were doubly impressed as always at how Polly held all the strands together (she took no prisoners and greeted us on the door step with tools and instructions…we had a happy afternoon dismantling things, something we do best).
 
God willing this new abode will make life considerably easier for the family and you never know, it might inspire QS to consider dictating his memoirs to a willing scribe.
 
With his blessing I will pop by from time to time and keep you up to date with what is going on in our favourite author’s world. Just please be patient, I live in another part of the country to Stephen and so I don’t have as much contact as I should or want. So please just drop in from time to time to see if anything new is up.
 
On Stephen & Polly’s behalf, thanks for your interest, concern and if you are so inclined prayers.
 
RG
 
 

Return Of The Blogger

I'm back.

Thank you for your patience. It's been a long, and for the most part pleasant, summer and I feel I owe an explanation for my absence from the blogosphere for it's entirety. Way too much has happened for me to cover in one post but I'll give a brief summary here and expand on details as time and my typing allow.

I left you back in June because the long decline in my dexterity finally reached a kind of tipping point and my typing became so unreliable, erratic and difficult to perform that anything otter than essential email communication became all but impossible. I have not yet found a satisfactory remedy for this but I have purchased an iPad which, with it's superior touchscreen keyboard, helps a little. It then took more time to find a suitable, but hugely expensive, stylus with which to poke at it with because my fingers are no longer up to the job. I missed blogging but the longer I left it the more things kept happening and less I felt able to catch up. Consider this post a kind of bull being taken my the horns sort of thing. I'm getting back in the saddle and mixing metaphors once more.

You may remember that long ago we started the long process of being rehoused which resulted in a slightly surreal meeting with, and letter from our MP, Tom Brake. (See Cometh The Man back in March.) Well the wheels ground awful slow but we were at last notified of a new development being built that includes wheelchair accessible accommodation complete with through lifts to move users up and down between floors. We were told, unofficially, that we were 'pencilled in' for one of these desirable properties. For weeks and then months we drove past the development and watched the walls going up and the roof being tiled. At least one extra bedroom was on offer as well as an extra bathroom and more space generally. All ideal. A few weeks ago an Occupational Therapist arrived to discuss our specific needs; hoists, bathroom adaptations and the like. He took notes, measured the wheelchair and then disappeared back to OT Land. Days passed. Then we received a phone call from him to say that lift that was being installed was too small to take my wheelchair. The lift shaft had been built into the fabric of the house and it was too late to change it. We wouldn't be moving after all.

We contacted Tom Brake again and stiff letters are being written but in the current climate of cuts it seems unlikely that new housing will get built in the foreseeable future. It seems a pity that no one thought to wonder what kind of wheelchairs might or might not fit in the house before they built them. I suppose they didn't want to waste precious space.

I will call it a day for now. Next time I'll tell you how I went yellow in August and ended up in hospital. Thanks for reading.

Until next time. (Soon, I hope.)

Less Pain And Wheelchairs

Those of you who follow such things will be glad to know that I will soon be able to resume my life of adventuring. My rafting trip up the river Amazon to train piranhas in dental hygiene techniques will proceed as planned now that my back is so much better. Dr Toosy popped in to check it wasn't osteoporosis and that it is actually getting better. (It wasn't and it is.) I have been been able to cut back on the pain-killers and have started teaching our goldfish to brush regularly.

Rations on my anticipated adventure have been sorted. My team will be eating the tins of baked beans that had previously served as table leg extenders. There may be some argument over who gets the tin of curry flavoured beans. We have been able to free up these valuable resources because Polly has found some wooden blocks that are designed for the purpose of extending furniture legs. They lack the je ne sais quoi of the Heinz tins but are less likely to collapse and squirt tomato juice all over our living room.

Today the man from Serco came and took my old wheelchair away. This was good for two reasons. Firstly it means I feel I can trust my new super-duper wheelchair. There has been no repeat of the breakdown I suffered just days after I first received it. And secondly, we don't have space to store a spare electric wheelchair. The old one has stood in our living room like a particularly unattractive decorative feature. Polly had taken to looking at it gloomily and wondering if she would be able to stand the Christmas tree on it. I had pointed out that the old chair did have a tilt mechanism so that would have helped with the age old problem of getting the tree to stand up straight.

Right, enough for now. I still have to organise with social services for carers to come with me on my Amazonian adventure. There may be a few health and safety issues.

The Sony Reader

I feel it is time for a moan. It's only tangentially related to disability but, what the heck, it's my blog. I have a love. No, not the small, bobbed haired light of my life, but those things with long strings of words and a narrative, books. I have always loved books, ever since John and Janet watched Spot run and helped me to associate the little squiggles on the page with words in my head. My grandparents had lots of books and so did my parents. I have thousands, even though in the last year or so I have had to give away many hundreds for want of space. I am not unduly precious about books. I do not insist that a paperback's spine remains pristine and I will not do you actual physical injury if you turn down the corner of a page, though I may whimper. Books are, after all, meant to be read.

I don't go anywhere without a book. Polly will tell you that I had a book tucked down the side of my wheelchair when we got married, just in case there was a lull in the proceedings. Once, when I was in an Intensive Care Unit and in an induced coma, the hospital rang Polly in the middle of the night, anxious because I would not settle. She arrived to find my left arm fidgeting and grasping and at risk of pulling out the various cannulae that were keeping me alive. “He wants his book,“ she told the bemused nurses and placed a paperback in my hand, whereupon I apparently relaxed and didn't come to for four days. You take my point? Books are important to me.

I tell you all this, not to impress you with my literacy, because I generally read popular fiction not high-brow Whitbread prize winning literature and it's been a while since I read anything that might be deemed a classic. (Scroll down on the right to see a list.) No, I tell you this because I want you to understand how upsetting and stressful certain changes in my condition have become when I find myself unable to manipulate and hold up some books. Not all books, thank God, but hardback books and paperbacks over a certain size. During the day it is not quite so bad because I can rest the book on a table and using various bits and pieces as weights can hold the pages open. It's a bit tedious when I want to turn the page but it works. At night, however, reading in bed is another matter. Constraints caused by BiPap masks and necessary sleeping positions mean that holding a book, virtually any book, is hard work. Holding CJ Sansom's 500 page Revelation or Ken Follett's 900 page epic The Pillars Of The Earth is nigh on impossible.

But then, Oh Happy Day! Sony came to my rescue. Late last year the Sony Reader came to our shores. An electronic device that can store in excess of 120 books (and you can buy a memory card that raises this to several thousand) displayed on a non-flicker screen using Sony's patented e-ink. Gadget heaven. To turn a page you just press a button. You can even change the font size. Sony have done a deal with Waterstones (and now, apparently, WH Smiths) to publish books in the appropriate Adobe Digital Editions format which you can download from their web-site.

As with the early days of online digital music, not all books are available in the format yet, but a fair number are. I still have to buy paperback editions of some of my favourite authors such as Christopher Brookmyre, Bernard Knight and Susanna Gregory, but presumably, given time, someone will notice these grievous lapses and deal with such shortcomings in the available library.

So, how much do you think these e-books, where available, cost? Remember there are no warehouse storage costs, no shop with shelf space to rent, no paper or ink to buy, no presses to run, no postage for delivery, and no shop workers to pay. You do still have royalties, web-space and web-design to pay for and a legitimate profit to make. Should an e-book cost the same or less than a paperback? A hard back? Bear in mind that you probably want people to buy material in the new format so you presumably want it to be competitively priced.

Well let's see, shall we? The new Simon Scarrow novel The Gladiator has just been published in hardback. I can buy it from Amazon.co.uk for £8.09, for £10.79 from WH Smith, and for £12.99 from Waterstones. In Adobe Digital Format for the Sony e-reader? It costs £14. 09! That's six pounds more than a hardback version from Amazon (including free delivery with Amazon prime).

There! I told you I was going to moan. I can't help thinking that Sony and Waterstones are doing themselves no favours. I for one can't wait for Amazon's Kindle e-reader to arrive in the UK. Then, at last, we'll have competition to drive prices down.

I wouldn't enjoy life so much without my e-reader but I do feel I'm being taken advantage of. Now, I had better pay some attention to the other love of my life.

Until next time. .

Back To School

How do I get myself into these situations I thought as I faced a group of ever so slightly surly looking teenagers. It was yesterday morning and I was sat with Polly in a small classroom in a centre that educates teenagers who, for various reasons, can't be taught in mainstream schools. I had been invited to talk to them about 'over-coming disabilities' by a friend, Karen, who heads up the unit but in a previous life had been an actor with whom I had worked with many times. Several weeks earlier it had seemed like a good idea but now the reality was before me in the form of a dozen kids and several support staff.

It was pretty obvious from the start that any dissertation on social constructs and disability models was not going to cut it with this crowd. Instead, with Karen asking leading questions, I embarked on a series of personal anecdotes about my childhood, schooling and early employment, before talking about college and how education gives you wider options and opportunities. To my relief and surprise I could see that the youngsters were engaged and listening. When Karen asked me how I coped with overt discrimination I explained that I took the anger and compressed it into a white hot ball of fury and pushed it way down deep deep inside me and then once in a while I would let it explode as I went mad with a machine gun. The staff all moved back a little but the kids fell about laughing.

Polly told them a potted version of our romantic history. The boys rolled their eyes and the girls went aah. They all liked the fact that I wooed her with fruitcake rather than flowers.

At one point we talked a little about ethics, and after Karen had explained what ethics were, Polly and I told them about the terrible decisions we were faced with whilst having Matthew and Sam. As I explained the 50/50 nature of inheriting FSH Muscular Dystrophy by asking them to imagine flipping a coin you could have heard a pin drop.

We finished with a Q and A session where the questions asked and the ensuing discussions showed that they had taken on board and appreciated the subject-matter. When asked how to approach someone in a wheelchair I told them to look at the person not the chair. It might be that the person in the wheelchair was witty, intelligent, sophisticated and immensely charming like myself, or, just as likely, a complete plonker. But, unless they engaged with them in the first place they would never find out. Hardly ground breaking, barrier smashing stuff, but true nonetheless.

For a bunch of difficult teenagers who can't cope with mainstream education they turned out to be rather nice, interested and interesting people. Who'd have thought it.

One Year On

Well I made it. I've kept this blog going for a whole year. 166 posts, well over 90,000 words, over 2,600 individual visitors and a whole heap of comments. And that's just here on the 'mother-site' so to speak. I've lost track of all the Disaboom readers, let alone those who follow it on Facebook. All told I reckon around 2,000 people read these words every month.

I've enjoyed writing these posts over the last year and have, like most bloggers, particularly enjoyed and appreciated any comments I've received. It's nice to know there are people out in the blogosphere actually reading this stuff and who are prepared to take time to write and provide feedback. So thank you if you have been one of them.

I set out writing How To Be An Inspiration because I wanted to chart the ups and downs of day to day life living with FSH Muscular Dystrophy whilst at the same time living with (and indeed within) a family. Looking back a lot has happened and a lot has changed over the course of the last year. I had a quick glance at the first post and was transported back to a time of chickenpox and marathons, but also a time when I was transferring myself from bed to wheelchair and from wheelchair to toilet. I had dexterity enough to manipulate a stylus to write this blog with a handwriting recognition programme rather than picking it out one letter at a time on an on-screen keyboard as I am now. I had a whole different team of carers who only came in the morning rather than morning, nights, some lunchtimes, some teatimes, some afternoons and sometimes all through the night. In terms of the Muscular Dystrophy it's been a year of rapid deterioration, one of the worse I can remember. Fortunately I don't have to define my life solely in terms of my disability. Polly and the boys give me both purpose and happiness and are the true measure of how my life is going.

Today is Easter Sunday and I'm writing this whilst watching Jonny Depp as Willy Wonka on TV with Sam. Matty is happily playing on the computer and Polly is pottering in the kitchen. All in all it is a very normal family scene.

The Blue Badge And A Grape

Yesterday I had an appointment with speech and physical therapists at King's Hospital. The appointment was at midday and we set out in good time and arrived within 100 metres with several minutes to spare. Then we tried to park. We circled the area several times. All the disabled parking bays were taken, of course. Predatory parking wardens lurked on every corner. Eventually we pulled into a permit holders only parking bay and hailed the parking warden who had materialised within seconds brandishing his electronic ticket issuing gadget. He asked us if we had a valid blue badge and we pointed at our fully legal, non-counterfeit, in date and valid badge which he inspected through the windscreen with the kind of intensity usually only seen from antiquarian book dealers validating a Shakespearean first folio, before nodding and saying we could park in that space. Relieved, and five minutes late, we rushed into the hospital and found where our clinic was within the maze of corridors.

It is many years since I've seen a speech therapist and spent time reciting carefully annunciated 'Peter Piper picked a peck of pickled pepper' and 'She sells seashells on the seashore' type rhymes so I wasn't sure what to expect. As it turned out she wasn't interested in my 'Round the rugged rock the ragged rascal ran' but with how I was managing with eating and drinking. She timed me drinking a glass of water and studied me intently as I ate a biscuit and a grape, holding my throat as I swallowed. I've never been so self-conscious eating in my life. The reason for this attention was to check that I wasn't choking or, as my granny used to say, make sure the food wasn't going down the wrong way. I was all set for a fight if she recommended that I only eat mashed up or liquidised food but instead she only suggested keeping my head tilted forward when I swallow to keep my trachea closed off. It should help stop me getting so bubbly in the chest of an evening.

The physiotherapist was full of helpful ideas about who to talk to about various issues. A raft of letters are being written on my behalf. I might even get some new shoes. I'm told they will be comfortable but God knows what they'll look like. I'll only wear them if they are made in a Chinese sweatshop like everybody else's.

After the session Polly and I grabbed a sandwich and a coffee because the grape and biscuit combo wasn't quite sufficient for lunch, and besides, no one had offered Polly anything. Afterwards we made our way back to the car, on the windscreen of which was a bright yellow bag containing a £60 parking ticket. In the distance, a parking warden was vanishing around a corner. The smell of brimstone lingered in the air.

Red Nosed Young Carer

If you live in the UK then you can hardly failed to have noticed that last Friday was Red Nose day. Countless people had their hair shaved off (like my friend Harvey) or went to work in their pyjamas, the England football team allowed themselves to be berated for failing to qualify for Euro '08 by a comedy actor for comic affect, and a disparate group of celebs scrambled and clawed their way up mount Kilimanjaro all in an attempt to do something 'funny for money'. The bi-annual telethon has raised in excess of £58,000,000 so far this year and there is almost certainly another 10 or 20 million to come, all in aid of good causes based here and in Africa.

As discussed in the Jerry Bashing post I have mixed feelings about telethons but generally speaking Red Nose day is exemplary, showing that with the right balance of entertainment and information the format works brilliantly. Red Nose day steers a remarkably steady course between evoking sympathy for the various causes and pointing the way to doing something about the problems. For example, your money buys X number of mosquito nets or supports this many workers at a special centre for junior carers. The documentary sections tell moving stories of desperate need but avoids mawkishness and over-sentimentality. The comedy has evolved over the years from rather self-indulgent and amateurish routines to sketches and pastiches of the highest order. (Well mostly.)

One of the good causes highlighted this year was a centre for children who act as carers for disabled family members. The mini-documentary told of a sighted young boy who cared for his blind parents. The young lad cooked and cleaned and did the family shopping without any apparent input from social services or home-care agencies and in his spare time he played selflessly with his disabled younger brother. The story (although surely not the whole one) was both moving and inspiring. Money raised by Red Nose day went to fund a centre where the boy and countless other young carers like him could receive support and, most importantly, have heaps of fun.

Acutely aware of our own situation Polly and I watched with Matty. Polly casually asked him how he felt about such a place. Matt, obviously taken with the fun and games on show, admitted that he'd enjoy visiting a centre like that. Polly cautiously probed further to see how much he identified with the young carers represented on screen. Matty sighed deeply and admitted he sympathised with the boy. “I am a young carer,” he told us solemnly. Polly glanced at me. “Sometimes,” Matty continued, oblivious to our anxiety, “I HAVE to play with Sam.”

“Oh,” said Polly, breathing out slowly. “So you don't feel like you need to go to a centre like the one on the television?”

“I'd like to,” sighed Matty, watching the fun the boy was having. Then he brightened. “I know. You could break Sam's legs! Or give him diabetes! I could go then.”

Sometimes you don't know whether to laugh or cry.

Sweeping The Playground

Last Monday Polly and I were invited to take part in the Daffodil day celebration at Westminster Central Hall in London. The theme was The Earth Is The Lords and about 2000 people attended. Polly performed the poem Red Shift and a sketch called Sweeping The Playground. Both pieces went down really well, I'm pleased to say. A few people have asked about the scripts.

Sweeping The Playground came from the show Hopes And Dreams and was a 2 hander. We converted it to a monologue for this event. Before anyone accuses me of some kind of theological inconsistency I'm absolutely happy to accept that Genesis chapter one is a creation myth, and not, as some people bizarrely hold, an accurate and scientific account of the origins of life, the universe and everything. But, as with many myths, there may be truths worth exploring within them.

SWEEPING THE PLAYGROUND

Just look at this mess, honestly, it's enough to make you weep, isn’t it? And as usual it’s down to me, the caretaker, to clear it up, though it doesn’t seem fair to me. Not that fair comes in to it. I am sweeping one corner of the greatest act of concentrated creativity ever… ever created.

I was there right at the beginning you know. “And God created the heavens and the earth.” Wallop. There I was. It caught me quite by surprise I can tell you. One moment nothing, the next instant ‘Zap!’ you’re stretching your wings and forming a choir. Quite disconcerting I can tell you.

I tried to have a word with the creator, but the Creator, he was already on to other things. He was busy creating the universe. I shouted after him, “it doesn’t have to be so big.” But did he listen? Did he buffalo. I thought to myself, anything this vast and intricate is going to be a nightmare to maintain. I’d better grab a broom.

I can’t you tell how much there is to keep clean. In this galaxy alone there are one hundred billion stars. I told him that he was going over the top. Who needs a hundred billion stars? But he didn’t stop there, oh no. There are billions of galaxies, each one as unique as a snowflake. This was creativity in abundance. A celebration of imagination.

Eventually, when he’d finished painting with broad strokes, so to speak, he got down to detail. Planets and moons and such like. I noticed he paid attention to one planet in particular. A blue green one whipped with white clouds and as beautiful as anything you’re ever likely to see. I could tell he intended this one to be special.

I pointed out to him that he was spending too much time in one place. When you’re painting on a canvas the size of the universe no one is going to appreciate the minutiae. God just smiled. A smile on the face of God is like… is like… the first day of a long holiday. Or it’s a cool breeze on a hot day. It’s like a hot drink after playing in the snow

Yes. When God smiles you know everything is going to be perfect. When God looked at planet earth he smiled.

He loved it. I could tell. He made oceans and he made the land. The oceans he filled with fish and creatures of the deep and the land he sculpted with mountains and plains and valleys. The land was lush with grasses and flowers. Forests quilted the landscape. Creatures walked, crawled and slithered everywhere.

I watched the Creator build his kingdom, though he was less like an architect and more like a child at play. There was joy in his invention.

Then when everything was perfect he reached out and took up a handful of dust from the ground which he shaped and moulded. A head, two arms, legs. Then God breathed his Spirit into the dust and man became alive.

And I thought ‘uh oh, here’s trouble.’ Later, when it had all gone pear shaped, I asked him why he had put such a creature as man into his perfect kingdom.

He showed me the universe again. The countless galaxies, the billions and trillions of stars tied up with cosmic string. Then he showed me man again, puny and imperfect man. And there, uniquely, I saw the divine spark that God had breathed into him at the moment of his creation.

Oh, and he hasn’t ruined everything. There’s still hope. Lots of it. You see the Creator doesn’t see humans as just another cog in the machinery of his universe. He sees them as part of the process of creation. They’re not here to just decorate the kingdom like pretty peacocks. (Which is fortunate really 'cos most of the ones I’ve seen couldn’t decorate a living room with a can of paint and some self-adhesive wall paper. )

My job is just to sweep up, but they can actually build the kingdom of God here on earth.
But it made me think why did God make all this for them? It’s incredible.

But then, ask yourself this, why does any father build anything, if not for his children?

Stephen Deal, 1998

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!

A Giant Leap For Mankind?

“Matty! Sam! Come here,” we called. The boys came trotting down the hall, forsaking the computer for a moment, to see what their parents wanted. “Watch this,” we directed, and sat them down to see Barack Obama take the oath of office and become the 44th and 1st black president of the United States of America. They were a little puzzled but humoured us. When they are grown up, with children of their own, I assured them they would tell those children that they had watched a great moment in history when they were little boys. When I was Matty's age I watched a man take one small step on to the moon. I hope my boys will remember the inauguration of Barack Obama as a step forward in mankind's evolution.

America, I think it is fair to say, has been something of a joke politically in recent years. 8 years of Bushisms and before that Clintoncsque Monicagate (non)affairs eroded already by the likes of Reagan before them, has left the rest of the world wondering why such a sophisticated, advanced and vastly powerful country seems to pick its leaders in much the same way our children play 'pin the tale on the donkey` or other games. The focus of hope on Obama, even the euphoric coverage here in Britain, seems to indicate that the world feels that America has elected a grown up leader this time. Rarely before has so much been expected of one person.

So, no pressure there then. Good luck and best wishes, Mr President.

Merry Christmas And The Most Dangerous Service Of The Year

It is Christmas eve and the big day hurtles towards us like a runaway snowball. I have two small boys who are wound up to fever pitch and vibrating with excitement. So much so, that if I could find a way to harness the energy they are emitting the world fuel crisis could be averted.

We've just come home from the most dangerous church service of the year, Christingle. For those of you not familiar with this peculiarly Anglican service, it's a children's carol service involving flaming oranges. Imagine 3 or 400 people, many of them children, holding oranges with lit candles stuck in the top, and waving them around whilst singing Away In A Manger. I make it my business to sit as near to a fire exit as possible. I'm pleased to announce that once again this year there was no fatal conflagration.

Matty and Sam took part in the nativity play as a king and a shepherd respectively. Sam ran down the aisle shouting “We're going to Bethlehem to see the bay-beee!” Very sweet.

Thank you for reading 'How To Be An Inspiration`. Assuming I survive the next few days I'll try and post again on or around New Years eve.

Merry Christmas to everyone reading this, what ever your faith or personal belief. Above all, let this be a time of peace for you. Even if you have children.

The Language Of Disability

If the title of this post has led you to expect a deconstruction of the social model of disability or an analysis of inclusive versus exclusive constructs of language then I'm sorry to have misled you. This post is about something far less esoteric, it is about the look of incomprehension on the faces of people I speak to. In short, this is just another Deal rant.

I would consider myself to be reasonably adept at expressing my thoughts. I can, if required, turn a phrase. Indeed people have, over the years, actually paid me to do so. I have written for television, had books published, shows performed in front of audiences of thousands and have given countless seminars and workshops. I could go on and mention the few times I have actually appeared on television and had my opinion sought, or the radio programmes in which I have featured or the occasions I have addressed auditoriums packed to their 3500 seat capacity. I would mention these things not to boast but to reinforce the fact that I am not some mono-syllabic, tongue-tied person unable to communicate and string sentences together.

I am the first to admit that when I am ill with a chest infection my diction is affected due to the emphasis of words being altered to match my breathing. But even so, I have occasionally led workshops whilst unknowingly suffering with double pneumonia. I also know that first thing in the morning, after a night on the ventilator, my voice is croaky. But a few sips of water or, better yet, coffee soon sorts that out. When I am particularly tired I know my voice slurs a little and becomes unclear, and I know that in a noisy environment I find it difficult to project my voice with sufficient volume to overcome the surrounding distractions. I know that the muscles in my face, particularly around the mouth are affected and means that it is difficult for people to take cues from the way my mouth shape the words, as we all unconsciously do. All this I know.

But, for the love of God, I do not understand the look of blank incomprehension I get whenever I open my mouth to speak to a stranger. I know that on the telephone, especially when talking to some call centre located in India, accents combined with the Dystrophy can make things complicated, so I go to some lengths to avoid such conversations. But in the real world, face to face, I do not believe I am completely unintelligible. And yet, time and time again, be it in shops or at home with new carers, with tradesmen or with Jehovah's Witnesses at the front door, I am continually met with looks of befuddled bewilderment and the aforementioned incomprehension. Okay, if the fate of the world rested with their crystal clear understanding of every word I utter, then a request for clarification is understandable.

“Did you say cut the blue wire or the red wire to defuse this 1000 mega-tonne nuclear device ticking down from 60 seconds and located in a densely populated city?” In such circumstances I would understand that you would want to be certain you had caught my meaning and not take a wild guess, but if I am waiting at a till, clutching a packet of biscuits and waving a debit card, which is more likely; that I am asking your opinion of the economic downturn or that I am asking for the price of the packet of Chocolate Digestives? Looking at your colleague and mouthing “What did he say?” does not help the situation. Equally, if you are helping me to sit up in bed and I ask you to let go of me, it is because I need to find my own point of balance, you calling for Polly to come and translate for you not only slows things down, it means you are not considering the context of the mysterious sounds I am uttering. “For God's sake, LET GO! You are going to KILL ME” as the weight of your arm pushes me over the side of the bed.

The fact of the matter, as I see it, is that some people see the disability and expect not to understand me. The more disabled I look, the less effort they put into trying. Wait a minute I hear you say. Perhaps you are deluding yourself, Stephen. Perhaps you are an incomprehensibly mumbling, speech slurring simpleton. But just moments ago the doorbell went and the groceries were delivered by a Spanish driver who seemed to understand me perfectly well and put the delivery exactly where I specified without any problem at all. And yet, when a parcel came yesterday, the delivery man, who appeared English, couldn't understand me at all when I said that yes, I would sign his delivery note. After asking me several times and me replying “Yes I can” in as many ways as I could manage, he gave up and said he'd sign it himself. It was almost as if he didn't expect to understand me, so he couldn't.

So at the risk of being misunderstood - I'll write slowly and clearly – Thank you for reading. Or as some people out there will hear – My fish pushes wheelbarrows.

In The Summer Of '79

I left school in the summer of 1979, at the dawn of the Thatcherite era and the end of disco. I had not applied to any colleges and I had no idea what I was going to do with the rest of my life. My parents were in the process of moving house and everything felt very up in the air. My friends were moving on with their lives; Paul to be a rock star, gigging all over the country and Europe; Darren, to manage a shoe shop in Weston-Super-Mare; and Jay to study Astrophysics at University College London. For want of anything else to do I joined a government Youth Opportunities Programme.

The YOP was one of an endless series of schemes to shoehorn young people in to the workforce. Spiralling unemployment meant that young people with few or no qualifications were finding getting work difficult and so were sent on courses to learn skills. I found myself in a group of 30 or so, mostly young men,, learning how to write job application letters and where to stick the stamp on the envelope. Even with my pitiful handful of A level results I was massively over qualified for the course. I once spent a whole afternoon learning how to give imaginary change to imaginary shoppers for imaginary goods. I would have happily endured this less than mentally challenging employment substitute indefinitely, mastering such skills as shoe lace tying and bottom wiping one after another until I was as full of life skills is it was possible to be. However, the course was held in a converted Georgian house in a road off Park Street, the steepest shopping street in Bristol, a half mile walk uphill from the bus stop. However tempting it was to learn how to open a tin or polish your shoes, the walk was too much. It was time to move on.

I was placed, courtesy of the YOP, in the administration department of the local fire brigade, where it was my highly supervised job to procure provisions and equipment for our fire fighting heroes. My first job was to locate and purchase a stool for the brigade drummer to sit upon. It is responsibility like this that builds a man. This was my first experience working in an office. There were five, including me, in the procurement department, a microcosm of offices everywhere. One man stood out, and even to this day remains the rudest man I have ever known.

George was in his mid 50s, balding, with a comb-over. He wore a brown jacket, usually with a yellow shirt straining to close across an ample belly. His nose and cheeks were a fine network of red, broken capillaries, and tufts of grey hair sprouted from his ears.. In his desk draw he kept a flat bottle of Bell's whisky from which he took surreptitious slurps through out the day, winking at me and saying it was his medicine. Most mornings, but especially on a Monday, he would crash into the office, some ten to fifteen minutes late, plonk himself at his desk, and ask each of us in turn how much sex we'd had over weekend, and in what positions. Maureen, to my left, a married woman in her 40s would sniff and tell him to mind his own business. Colin, who I would guess to have been in this early 30s would make up a ridiculous figure and go back to reading the Sun, while Barry, who was supposed to be in charge, but was a good 20 years younger than George, would flush crimson and asked George if he had completed the Leyland order in an attempt to change the subject. George ignored him. He would lean across his desk, directly opposite mine and ask me if I'd 'got any' over the weekend. He seemed convinced that as a teenager I must be promiscuous and wanted every detail. Disappointed with my mumbled and evasive answers he would regale us with his own exploits in various clubs through out the city and tell racist jokes.

When ever I hear people moaning about how PC everything is these days I think or the odious George. And even though I was barely 18 at the time I still feel ashamed that I didn't stand up against him. Even in 1979 he was a dinosaur and I can't believe he was tolerated, let alone excused because he was 'only joking'.

I was only with the fire brigade for about 4 months before moving to the civil service, ironically to work in the department that paid young people on YOP schemes.

Brothers And Sister

Facioscapulohumeral muscular dystrophy (FSH) is a condition that affects both men and women equally. The chances of inheriting it from an affected parent is a straight 50/50. I know this from reading the literature and from personal experience. My father had the condition (misdiagnosed as Polio as a child) and of his 4 children, 2 of us inherited it. (See post Up Up And Away for more about FSH and inheritance.) There's me, Stephen, the oldest, with the condition. Then my brother, Simon, with out the condition. Next comes Mark, with FSH, followed by little sister, Helena, without it. Gregor Mendel would have been thrilled.

Growing up in a family where fully half the members are disabled seemed, at the time, perfectly normal. You can hardly play the 'I'm disabled, pity me' card if 50% of the family are in the same boat. We were all expected to behave as well as each other and there was no sense of favouritism or lowering of expectations. As I've grown older I've come to appreciate just how stable my family was. I have no wish to idealise the situation but if you had to grow up with a disability then ours was the family to do it in. At some point I know I'll write about my mother and father but just for now, let's concentrate on my siblings.

I am inordinately proud of my brothers and sister. They endured the same uninspiring education as I did and have each gone on to be very successful in their fields. Hartcliffe Comprehensive school in the 1970s was not renown as a beacon of academic excellence. I know for a fact that at least until recently we were the only family of four children who attended the school to all have graduated university, let alone with a total of 2 Doctorates, a Masters degree and a lowly Bachelors degree (mine). Proud? You bet I am.

Simon (PhD in Computing) is a something complicated to do with computers that involves him flying all over the world, He is married to the lovely Jaspreet, and has two sons. Mark (PhD in Disability) has carved out a niche in the disability employment sector. He serves on DEAC (Disability Employment Advisory Committee) for the government. He also travels all over to lecture. My baby sister, Helena (MA in Personnel Management) is head of Human Resources in Asia for an oil company (Hess). She lives in Kuala Lumpur with her husband, Andrew and their two sons. Not bad for a group of kids from Hartcliffe.

I'm sure that we each have different memories and perspectives of growing up with Muscular Dystrophy, how it affected and shaped us as a family. There were fund-raising days, the occasional sadness of a friend or acquaintance passing away, and the annual MD Christmas parties

Ah, the Muscular Dystrophy Christmas party. An annual get together held in a prefabricated hall where we sat at trestle tables and ate party food, played bingo and watched, joy of joys, Woody Woodpecker cartoons. Someone would sing Tom Jones songs and eventually, just as the tension became unbearable, the sound of jingle bells would be heard and a gruffly west country “ho ho ho” heralded the arrival of no less a personage than Father Christmas.

This is where my memories and those of my brother Simon's differ. As Father Christmas doled out presents we waited in breathless anticipation as names were called out. He maintains that Mark and I were given colour televisions while he got a balloon. The truth, I seem to remember, is that I always seemed to get a Soccer album, Score 1973 or something, while Simon got a toy of some kind. (Mark and I only ever got one television and that was from the Young Farmers. It was very embarrassing.)

If for some reason you would like to read a little more about my teenage years, then have a look at Rock God's post My Tone Deaf Mate Won TWO Ivor Novella Awards. Some of the story is actually true.

The wheelchair V The Walker

On the post Grit In The Shoe Of Life I listed three of the petty annoyances of my disability. Here is another one, let's call it The Walking Wanderers.

Imagine the scene; you are wheeling along the High Street pavement, thirty feet ahead of you are an elderly couple, laden with Christmas shopping, walking up towards Woolworths and a whole bundle of 3 for 2 offers. They walk slowly and you in the wheelchair are closing fast since the chair moves at the equivalent of a brisk walking pace. You line up to overtake on the inside, next to Superdrug, when with feet to go, and for no apparent reason, the elderly couple stop dead. You come to a juddering halt yourself and miss smashing in to their brittle boned back of the legs with less than a foot to spare. You release a breath in a hiss of relief and prepare to negotiate around the now stationary obstacles. But then, one of the couple (usually the man for some reason), without looking, takes a step backwards and onto your metal foot-plates. He stumbles, partially falling into your lap, and glares at you, assuming you have run into him. Once disentangled he limps away on the arm of his spouse muttering about not letting 'them' out unaccompanied.

Some time later, with rolls of wrapping paper strapped to the back of the wheelchair and a box containing special offer bubble bath on your lap, you are heading back down the High Street towards Marks and Spencer's to buy a woolly hat when the same elderly couple step out of WH Smith's directly into your path. You just manage to swerve around them, nearly taking out a woman and her baby-buggy, and head off away from the couple, hearing her saying to her husband something about 'liabilities'.

The final encounter comes as you head back towards the car-park. You spot the by now familiar anorak and beige mac a little further down the street, and mindful of their erratic wanderings you slow to match their speed. But their pace grows ever slower as they discuss the merits of Vicks Synex spray over menthol lozenges, and eventually, as you realise that Christmas will be long over before you reach the car at this ever creeping pace you determine to overtake them, albeit at a wide margin. It is at this point, as you prepare to manoeuvre around them, that they speed up a little and begin to zigzag back and forth before you. As you try to anticipate a gap in which to ease passed they begin to vary their speed, randomly quickening and slowing, meandering left and right. You draw level and try to squeeze by. The old lady, with out looking or giving the slightest hint of intention, suddenly changes direction and bumps into you side on. She glares at you. “I do wish you would watch where you are going, young man!” she says. Then she pauses, taking in the wheelchair, and asks. “Where's your Mummy or Daddy?”

Tips for people who can walk.

1. Walk in a straight line. Don't zigzag- It's not clever and it's not funny.

2. Don't stop abruptly. Slow to a halt. 1f you can't do this then at least wear warning lights on your back.

3. Maintain a constant pace. Speeding up and slowing down randomly is just plain mean. Leave variable speed to those of us with electric motors and adjustable power settings.

4. Remember you share pavement (sidewalk) with other users. It is not a lavatory for your dogs, nor is it the ideal place to leave gum. Wheels are harder to clean than shoes.

5. Stopping at the narrowest point of the pavement (eg between a bin and bollard, tree or lamppost) for a conversation is selfish. Don't do it. Ever.

6. Waving a cigarette around at waist height while you walk is tantamount to poking me in the eye with it. Don't be upset if I throw take-away coffee over it. Or you.

And don't get me started on umbrellas.

Lies, Damn Lies And Statistics

My cyber-friend, Blake, at I Hate Stairs, tells me he has had a problem posting a comment here at How To Be An Inspiration. As far as I can tell all is well this end but knowing my expertise with computers and internet type things I will be the last to know if my blog has contracted a problem. I would be most grateful if a few of you reading this would leave a comment so I can see if the problem is wide spread. If you do have a problem please drop me a line at – h2bai*stephendeal.org (replace the * with a @ to help foil those nasty spammers). Thanks Blake for bringing it to my attention, but I hope you don't mind if I wish the problem was yours because you, at least, have a fighting chance of knowing how to fix it. I've found that weeping and banging the computer with a shoe has very little maintenance or restorative properties. Meanwhile, check out Blake's wheelchair stalking post. Be afraid, very afraid.

Over at Disaboom, where I also post these posts, cherylberyl has asked how I came up with the figures I did for the Disaboom posts when I wrote I'm 100 Today! Okay. Well, Disaboom, although a marvellous resource, is pretty useless when it comes to tracking your blog's statistics so a degree of extrapolation is required. Google Analytics provides a smorgasbord of statistics for my How To Be An Inspiration site, so I know how many visitors I have per day and per month. I also know if it is the same demented soul visiting time and time again or lots of discerning individuals visiting once or twice. So, at Disaboom I total up the number of visits per post for the last month (not the last 30 posts) and divide by 30. This gives me an average number of visitors per day. Google Analytics reveals that I have, for example, 900 visits from 300 unique visitors over the last month on How To Be An Inspiration, so assuming Disaboom blog readers behave in much the same way as Google blog readers (and I realise that's a major assumption) then if I have had, say, 1500 visits to my Disaboom posts over the last 30 days then it is likely that 1/3 are unique visitors. Therefore it is not unreasonable to say I have a regular Disaboom readership of 500 individuals in this example. Yes, I know there are a lot of assumptions but until Disaboom stop treating every post as an unique blog then it's the best I can do. Tim, if you are reading this, maybe you can help.

And finally, a few months a go I joined Facebook, which once you get past the countless invitations to hug, grow flowers, drink beer and all manner of cyber-silliness, has proven to be great fun, putting me back in touch with several people from my dim and distant past. (Hi Brian, Tony, Jonathon etc.) I have been trying to get this blog to show up on my Facebook page but it seems to require large numbers of people prepared to concede that I write this before it will let me, and even more people prepared to admit they read it before any meaningful statistics can be gathered. If you are on Facebook, and have not already done so, then please, be my 'friend'. I'll be yours. Look for Stephen Deal and this photo.

Thank you for reading.

I'm 100 Today!

Welcome to my 100^th post.

That's 100 little billets-doux from me to you. If you have read the whole lot then you've read well over 50,000 words.

I've had a little rummage around the blogosphere to see how this blog compares to others of a similar ilk. I don't just mean other disability themed blogs but others in the whole 'online journals and personal sites` category as defined by the clever people at Google Analytics. Apparently such sites get an average of just over 1 visit per day. This site averages 27.4 at How To Be An Inspiration and 45.8 at Disaboom, so on average, I am delighted to report, 67.2 come and at least glance at what's been written every day. It's harder to work out if it is the same demented person is obsessively visiting time and time again or lots of different people. Google Analytics helps again and tells me that (at least) 250 separate individuals visit How To Be An Inspiration and I can extrapolate that (approximately) another 500 at Disaboom. So, if you are reading this you may well be one of some 750 regular readers. Okay, it's not world beating but I'm pleased. If you are not a regular reader then you probably think you've wandered in to a maths lesson. Sorry. I won't mention stats again until the anniversary post next April.

I love writing this blog for a number of reasons. When I was touring with a theatre company a few years ago we regularly attended festivals and youth camps. I think it must have been in the late 80s and we were performing at an international youth camp when one of the organisers approached me and said “you must meet Toni”. Toni turned out to be a young women in a wheelchair. We were introduced and left a lone with each other on a balcony over looking a sea of tents. “Hello,” I said. “Hello,” said Toni. We sat together for ten minutes hardly saying a word to each other. Then Toni said “I hate it when they do this. You're in a wheelchair, I'm in a wheelchair...” “We must be friends!” I finished. As it turned out Toni and I got on fine but the only thing we had in common was that we both used wheelchairs. The truth is I don't have disabled friends. I have a disabled brother and had a disabled father so I'm not against cripples per se, but aside from some acquaintances and the guy who checks the tickets at the cinema, I don't know other disabled people. And quite frankly I was happy with the way things were. After all, if they were all as moany and ill humoured as me, then why bother? But then, back in April I started this blogging business and found myself in touch with the online 'disabled community' and what do you know? There are loads of them out there, the sick, the lame and blind, and not all of them are whining and witless. In fact, quite a few are funny and fun to be in contact with. I've come to genuinely appreciate being part of a community of people who share a lot of the problems, joys and world views that I have. It has been a real bonus to the main reasons I write this material.

I started this blog because I had become aware that my condition, FSH Muscular Dystrophy, was undergoing one of its periodic periods of decline. Movements and transfers were becoming harder and as a result I was pulling muscles and hurting myself' more frequently. I could feel myself withdrawing and pulling inwards. Polly had been encouraging me to start writing again and I'd just bought a new laptop PC with enough processing power to decipher my handwriting scrawl and was keen to try it out. I'm not saying that I was depressed or contemplating my mortality but I was aware that I have led an atypical life for a severely disabled person. I'm married with children, have worked and travelled, lived independently and come as close to death as it is possible to get but survived. I've met and worked with many interesting people, won awards, been betrayed and been loved. Come to think of it I'm not sure anyone, disabled or otherwise, has a typical life, but the fact remains, I have stories to tell; stories I wants my children to know. I'd also like friends and people I know know how much they mean to me. And, of course, I'd like someone to know how bloody irritating life can be in a world full of literal and metaphorical steps when you are sat in a wheelchair. Who knows? If enough of us keep pointing out the peculiarities and iniquities someone may listen. And in the meantime there's plenty to laugh at.

Thank you for reading. I'm now aiming at 1,000 regular readers so, please, spread the word. And yes, emails and comments mean a lot, so please stay in touch. I suppose I would still write this if no one was reading but it wouldn't as much fun. And if you are writing your own blog please keep writing. Where else can I nick ideas from? I call this blog How To Be An Inspiration as a personal joke at myself, but in truth, it's you who inspire me.

On to the next 100.

Grit In The Shoe Of Life

Continuing with the moany old git theme. Disability is rubbish. Let's face it, very very few would decide to opt for it as a lifestyle of choice. Yes, I know that I should accentuate the positive and eliminate the negative and all that, but all in all, I think most of us would agree that we'd forego the advantages of a blue badge in exchange for dropping the dis in disability. However, despite the assurances of Falwell. Bakker, Swaggart, Oral Roberts, et al, faith and an open heart are no match for genetics or a severed spinal cord, and we have to live with the cards we've been dealt. Moaning does no one any good. (Long time readers of this blog are now raising eyebrows and wondering where I'm going with this.) So, in complete acceptance that it will make no difference whatsoever, here are 3, non-medical, things that irritate me about my personal situation. All are minor, all are merely the grit in the shoe of life.

Talking to navels
As a wheelchair user I spend a great deal of time talking to peoples midriffs. This is usually because people stand to close and I am either forced to stare straight ahead and address their waists or crotches depending on their height, or crane my neck and talk to their chins. Step back, or better yet, sit down if you wish to engage me in conversation. Sometimes, when I have the space, I play a little game. I move my chair away from the person a couple of feet or so to make easier eye contact, if for some reason they step forward and close the gap I wait a moment and then move again. If they close the gap I move again, keeping the conversation going. The aim of the game is to move the person from the starting point to the target point, which may be the other side of the room, the buffet or, indeed, the exit. In the past I've managed the full length of a school hall.

Being Grateful
When you are severely disabled you spend a lot of time saying thank you. Because you are reliant on other people for so much you feel obliged to express appreciation. This is because you don't wish to appear to take their assistance for granted, but, just occasionally, you run low on gratitude. I was once working in Madrid when my Spanish host expressed astonishment at how often the British say please and thank you. “You buy a cup of coffee. You say to the waitress 'please may I have a cup of coffee, thank you.' She says yes. You say thank you. She brings the coffee. You say thank you. You say 'how much, please?' She tells you. You say thank you. You give her money and say thank you. She takes the money, you say thank you. She offers you the change, you say thank you. You take the change from her and say thank you. And then you don't say good bye. You say thank you.” Sometimes it feels as if my whole life is a transaction for a cup of coffee. “Please can you move my foot. Thank you.” “Please can you help me cut this steak. Thank you.” “Please can you hurry with the hoist because I'm dying to go to the loo. Thank you.” “Please can I have my computer so I can moan about you. Thank you.” “Oh, and please may I have a cup of coffee. Thank you.” Please don't misunderstand me, I am sincerely grateful and appreciative of the help and support I receive, I couldn't live without it. It's not as if I could make my own coffee with out having to express thanks and gratitude to the staff at the local burns unit. Thank you for reading.

In your own time
This, in many ways, follows on from the last one. I spend a lot of my life waiting for people. I wait each morning for carers to arrive and get me up. They usually arrive at the agreed time but occasionally things beyond their control get in the way. (Damn that elderly man for needing an ambulance.) I wait for it to be convenient for someone to make me coffee. Recently I had to wait for district nurses to come and help me go to the loo. This weekend Polly is going away for a girly weekend. We rang the district nurses to organise them to come in. They said yes, of course they'd come. Once. Once in twelve hours. We've sorted something out but no thanks to them. I wait for carers to help me get to bed. This time they tend to arrive earlier than I would care for them to. Last Monday I went to see Quantum of Solace at the local multiplex. The film ended (with explosions and a can of motor oil) at 8.50pm, not too late for a grown up I think you'll agree, but by the time I got home at just after 9.00 there were 2 carers waiting for me. Then I felt guilty for keeping them waiting. Now I know that we all have responsibilities and are interdependent on others, but sometimes my dependency grates on me. Now, you see? I'm being terribly ungrateful. Next thing you know I'll be talking to your crotch.

Crabby

Oh I'm a moany old git today. I had an appointment at the Royal Brompton Hospital this afternoon, the result of reaching near breaking point a while ago. (See - A Series Of Unfortunate Events) The good Dr Toosy wisely decided to have my current medical situation assessed by the mighty minds of the Brompton and (early next year) some one at Kings. So, today, Polly, Matty (off school with what Sam had last week) and I ground our way through the London traffic, waving at snails as they whizzed by, to Kensington. Parking in the area around the hospital is virtually non-existent, with about 9 disabled parking spaces to share between both of the hospitals main buildings. We found one of the precious bays unoccupied for a nano-second and nipped in, no doubt causing some one with an iffy leg to have to pay at one of mortgage requiring 'normal' parking spaces.

On the way up Matty had been asking about our astrological birth signs. I'd given my stock response, “I'm Pyrex and your mother's Caesarean,” but Polly admitted to being Libra and told him I was Cancer.” “The crab?” “There's no one crabbier,” remarked Polly. Then warming to her theme, “he's so crabby he moves sideways.” The reason Matty was asking about this nonsense was not because we were encouraging his enquiring mind to explore new age mysticism but because it had been mentioned on The Sarah Jane Adventures, a spin-off of Matty's beloved Dr Who.

Anyway. . .

We waited on Lind, a corridor on the top floor, for a doctor to see us. The clinic is always busy, full of people who for the most part make me look like an Olympic athlete. (Mind you, they probably look at me and wouldn't fancy my chances in the 110 metres hurdles.) Eventually, after blood had been taken from my ear-lobe and tested for various gasses, we got to see Consultant Dr Michael Polkey, who is, as all the staff are, very nice. Apparently my blood gasses are fine. . . and that's it really. There is not a lot more they can do. They did, very kindly, offer to take me in for the odd weekend if I need a break. And he was very sympathetic and supportive, prepared to write as many letters as we need writing to any one who we think might be able to help. The trouble is, I can't think of anyone for him to write to. Does anyone know the address of good stem-cell researcher?

The journey home made the journey there feel like Lewis Hamilton's qualifying lap at Monte Carlo. Tortoises and three-toed sloth rush passed us as we crawled home to pick up Sam from where he was being looked after. So, there goes another afternoon of my life I won't get back. Bah humbug.