Birthday Boy and Quiz Night

Saturday was Sam's sixth birthday. We have been counting down to the day for months. It is beyond my abilities as a writer to communicate just how vibratingly excited my second born has been in anticipation of the day. His maths has improved no end as he's mastered subtraction and the day has been built up in his mind to a day of birthday perfection. No pressure then. At six o'clock am precisely our bedroom door flew open and our newly minted six-year-old burst in followed seconds later by a slightly blurry-eyed older brother.

Amidst the mass of wrapping paper covered presents was a blue camera from his great aunt Megan. From then on it was like being in bed with a Paparazzi, a blinding flash going off time and time again. Fortunately he was eventually distracted by a game for the Wii which required a retreat to the living room, although every step of the way was photographed and recorded for prosperity. All the time he was clutching a yellow furry thing called a Puffle which Matty had given him.

Later that morning we found ourselves at Kidspace in Croyden, one of those indoor maze of climbing, rope, plastic and tunnels in garish colours that children vanish into to scream and chase and perform death-defying slides in foam encased safety. Eight of Sam's friends, plus Matty were in attendance for this much anticipated party. We had booked the party months ago and all we had to do was turn up with some children and a cake. The cake, Sam had specified, was to be in the form of a caterpillar with each segment a different colour and with each child's name written upon it. The staff at Kidspace were taking care of the rest, including the food, in the exclusive birthday party orientated Orange Pod. You will be unsurprised to know that I managed to find a table and a cup of coffee to retreat to.

That evening we left the happily exhausted birthday boy in the loving care of Pam, his grandmother, and attended a quiz night at the school. As previously mentioned in these pages, I love quizzes and become insufferably competitive when partaking in one. For years I have competed in the school quiz and for years my team has come second. This year, unlike last, I was not suffering Oxygen deprivation and a lifetime of accumulated trivia came to the fore. Yes I knew what Dane Godtfred Kirk Christiansen gave the world in 1958. Where was the Magna Carta signed? Easy. Ha! Who was Queen Elizabeth II first prime-minister? Ask me something challenging. The chemical symbol for Potassium? Okay. Fortunately I was a member of a team who knew such things. They also knew such useful things as the number of dominoes in a set. By the time of the final round, general knowledge, it was neck and neck Which superhero's secret identity is Steve Rogers? If my facial muscles were capable of it a huge grin would has spread across my overly smug face. We had that round nailed.

The final scores were totalled up and we, by the massive margin of 1 point, had snatched victory. At last my awesome talent had been recognised. As Polly and I wandered home, our victory bottles of wine clinking together, we considered that, all in all, it had been a pretty good day.

Until next time. . .

Answers – Lego. Runnymede. Winston Churchill. K. 28. Captain America.

Fair's Fair

Last Saturday was the school Christmas fair and it was all hands to the deck. A school fair is the Burn (Polly's maiden name) family's natural habitat. Despite being swamped in clown doctoring and Polly Mixturing, Polly somehow managed to find herself agreeing to design, make and wear a Polly's Pockets crinoline hooped dress covered in pockets for children to pick presents from. Of course, it was a huge amount of work, involving a temperamental sewing machine, some hula-hoops and yards of material, and quite a few late late nights, but the final result was thoroughly satisfactory.

Meanwhile, Pam, Polly's mum had agreed to run and stock Nanny's Stall. She had been collecting toys, ornaments and bits and bobs for months, as well as knitting cardigans at a prodigious rate. It took two car trips to transport the accumulated stock to the school.

On the day Polly and Pam disappeared off to the school early leaving me to sort out the boys. It turned out that it is easier to corral custard than get two boys ready to go out. You say, “we're leaving in five minutes. Have you got your shoes on?” They hear, “we're leaving in five minutes. You have time to start a computer game, build something large out of Lego, and have a pillow fight whilst bouncing on the bed.” It is a miracle to me that Polly ever gets them to school of a morning. Eventually they announced they were ready to go. Sam appeared dressed in a t-shirt and a pair of shorts. I sent him back to find some jeans and a warm top. He was indignant but reluctantly went back to change. He reappeared wearing a cardigan that had last fitted him when he was three. I sent him back to change again. Sam, with a perfectly straight face, denied that he had any other clothes.

Many minutes later we were on our way, walking across the local leisure centre's car park, when Sam announced he had forgotten to bring his purse which contained all his spending money. Back we went.

By the time we arrived at the school the fair was well under way. Polly was surrounded by a horde of small children handing over their 50p coins and rummaging in her many pockets to find presents. Pam was doing a roaring trade on Nanny's Stall. Hundreds of people were milling around. I retreated to a corner and hid.

My wheelchair allowed me to rise up and survey the scene. Occasionally the crowds would part to allow Sam, wielding a puff of pink candy-floss like a sticky magic sword, to pass through. Matty would appear periodically to beg more money to invest in trying to win the fastest Mario Kart lap on the Wii stall.

We're not sure yet how much was raised for the school at this years fair, but if the efforts of my family are anything to go by, it should be a lot.

Until next time.

A Long Dark Midnight Snack Of The Soul

On Saturday Paul and Darren (also known as Rock God and Bass Bin) pulled the hay from their hair and smartened themselves up to make the trip east to the big city and to visit me. As ever I feigned delight at seeing them and we soon fell into a decades old pattern of abuse and nostalgia. Having known each other since infancy we have a lot of nostalgia between us.

Paul, when not playing deafeningly loud rock music in dozens of west country pubs and music venues, works as an administrator in the beloved NHS where he is a highly valued, well motivated and appreciated member of a dedicated team. Or as he puts it - “Just because you're essential doesn't mean you're important.”

Darren runs his own company called Project Link where he oversees the building of refrigeration storage unit type thingies. In a very real sense he is a fridge magnate.

It was great to see them both again, even if it meant I missed a fireworks party round at Catherine and Stewart's home. But as Cath told me at the school gate when I was rounding up the boys from their educational duties, I can see them any time. I then realised I hadn't seen them in ages, what with chest infections, bad backs, and sheer bone-idleness. Then I felt guilty.

I'm was feeling exceedingly emotionally frail yesterday due the mother of bad nights I had had. Usually I fall asleep quite easily and when I don't I have certain mental processes that normally are effective. Failing those, I just read some more. No problem. That night nothing worked. I don't normally get stressed about the odd night of insomnia; after all, it's not as if I have anything too critical to do the next day. But as the night dragged on and on I began to feel trapped. All I wanted to do was get up, wander about for a few minutes, and perhaps make myself a drink. Of course I couldn't. Getting up for a few minutes would take about fifteen minutes and then another ten or so to get back in to bed. Not to mention the time it would take for the ambulance to arrive if I tried to make a hot drink. The trouble was I can remember being able to do those things. I can remember making my own hot drinks and carrying them safely to a table. I can remember just getting out of bed because I had forgotten something. My brain, on Sunday night, kept telling my body to just get on with it and my body just laughed. I became increasingly aware of all the things I can't physically do any more, which at 3 in the morning is a very dark place to be, both literally and figuratively. (Well not literally actually. Our bedroom is anything but dark, what with the little green light from the ceiling hoist, the orange battery charger light, the red bedside clock, the varying green light on the ventilator, the hoist power supply light and, of course, the ubiquitous sodium orange glow of urban living that leaks through the curtains. Sometimes I think we should relocate the room to Blackpool.)

I am perfectly aware that it was sleep deprivation that was behind my long dark midnight snack of the soul. Once the thought was in my head I couldn't switch it off. I lay there feeling trapped. Of course, it wasn't sufficient for me to suffer alone. My occasional gentle shuffling eventually woke the light of my life who was full of sympathy (the first few times). Apparently me turning a small light on to read by in the middle of the night occasionally can be a little bit annoying. (Who knew?)

I survived, of course, although, for some reason, Polly was a little bit tetchy the next day. I'm not naturally given to navel-gazing self pity (unless I'm writing this blog) so I found the experience a bit disconcerting. Even worse, Polly, who habitually reads this over my shoulder while I write, in case I malign her in any way, became all upset when she read I felt trapped. “What do you mean, trapped?” she demanded. “Trapped in a loveless marriage?” “What? No!” I answered, genuinely confused. “Oh, that's okay then,” she said, somewhat mollified. “I was just checking.” Then she added, “You need to get some fresh air.” Which is why I ended picking up the boys from school, meeting Cath, and feeling guilty of friendship neglect. Who says life has no symmetry.

End of ramble. 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.

Quiz Night

Which planet, apart from Venus, has no moon? Who, because of his smallpox vaccine, is known as the father of immunization? Name all seven colours of the rainbow. Who illustrated A.A. Milne's Winnie The Pooh? Who led the peasants' revolt of 1381? Which artistic movement was Monet part of? What is the chemical symbol for Tungsten?

Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.

The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.

As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.

The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.

Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.

Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.

Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.

Robert the Bruce.

R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)

Killer Zombies

It must have been sometime before last Christmas when Matty came bounding home from school announcing that he absolutely HAD to try out a new game on the computer. The game, he informed us, could be found online at a web address he'd been told about at school. EVERYONE was playing it. Cautiously we typed in the address and were reassured to find ourselves at a game featuring little stick men getting from A to B by solving little logistical problems. Harmless and mentally stimulating. Go for it, Matty, we said, knock yourself out.

A week or so later Polly entered the bedroom to find Matty gleefully cutting down zombies with a bloody chainsaw. Horrified, she yanked him from the computer and demanded to know what he thought he was doing. “I'm killing zombies, Mum,” he explained helpfully. “You have to chop their heads off or they'll eat your brains. If you don't cut them just right they just keep on coming st you. I'm nearly at the next level.” With that he went to start his decapitation rampage again.

“Oh no you don't,” said Polly. “What do you think you are doing?”

“I thought I'd explained. I'm cutting the heads off the undead.”

“No. What do you think you are doing playing a game like this? You know you are not allowed on sites that daddy and I haven't checked.”

“But you did!” exclaimed Matty indignantly. “You said I could last week.”

It turned out that the site that had featured the harmless and, indeed, stimulating stick men game, was this week featuring the slightly less wholesome Killer Zombie game. It was a kind of sample shop for new online game demo's. A collection of a wide span of different game genres. One week, Fluffy Bunnies Dig a Hole type games, the next, Slay Granny with her own Knitting Needles. Polly promptly banished him from the site and he was forbidden to revisit it. Matty sighed but, unlike his chainsaw wielding zombie slayer, knew this was a battle he was not going to win. Used to the seemingly arbitrary nature of grown up's decisions regarding the can and can't dos of life with a computer he wandered off to do something more suitable like picking a fight with his younger brother over which TV channel to watch.

Now, roll on several months.

Polly is approached by the mother of one of Matty's classmates at the school gate. She tells Polly that her son had been found the previous evening playing on the computer a game featuring a bloodfest of zombies. Apparently, she told Polly, her son had found out about this horrible game from our own sweet Matty. Were we aware of the kind of games Matt was playing? Polly assured her we would take immediate action. Summoning him to her she demanded an explanation. “You know you are not allowed to go to that website or play the zombie game, Matty.”

Matty looked puzzled and not a little hurt at this display of mistrust. “I didn't go to the site or play the game,” he said indignantly. “You told me not to.”

“Then why does [your friend] say he learned about the game from you?”

Exasperated, Matty replied, “you said I couldn't PLAY the game. You didn't say I couldn't RECOMMEND it.”

Parent's Evening

I don't know how you feel but I find parent's evening a stressful experience. Any way you look at it you feel that your children are being judged and that by extension you are being judged on your parenting ability. Late this afternoon Polly and I, with the boys in tow, entered the school hall and waited for two teachers to sit in judgement.

Obviously, in reality, there was no reason to worry. Neither child shows signs of psychopathy or any major form of personality disorder and both are hitting their educational targets with no significant problems. Indeed, when the worse that can be said of Sam is that he sometimes doesn't listen to others in the playground, you do tend to think, he's four, show me a four year old who is attentive to others all the time and I'll prick you with a pin to wake you from your happy little dream world. Matty's major failing is that he doesn't always keep his tray tidy. Yes, but his bedroom looks like a catalogue photo for Ikea, of course. Keeping his tray tidy and organised is important, I recognise that. If it was we would get the notes that say he has to come to school dressed as a Tudor king on Wednesday morning before the Tuesday evening we usually get them.

I'm sure that any anxiety I have connected to parent's evenings stem from my own school days and the paranoid suspicion that my teachers were going to reveal some awful secret about me. What this dreadful truth was going go be I was never sure. I was so completely invisible at school that it would have amazed me if my teachers could have picked me out of a line up unless there was a neon flashing arrow hovering over my head. I was once put in school detention for taking a short cut across the grass. The fact that I was slowly losing my ability to walk was not considered a mitigation. And I was once reprimanded for reading Orwell's Animal Farm during a French lesson but when this was mentioned at a parent's evening it was only to say how impressed other teachers in the staff room had been that any pupil in our school was reading Orwell of their own free will. Perhaps, aside from a relatively sophisticated taste in literature, I was afraid that my parents would discover how average I was. Luckily I had younger siblings who shone brilliantly behind me to distract them.

Matty and Sam are both, according to their teachers, bright, happy, well adjusted and socially adept children, so I suppose Polly and I are doing something right. Now, if they can just translate this into well paying jobs in the future so they can support us in our dotage then we will have cracked it.

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.

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.

It's A Bugs Life

We are awash with children. The school is closed for an Inset day (In Service Training day or – if you don't do school-speak – a day off for staff to learn how to teach better). So far we've had sticking and cutting, bouncing on the mini trampoline in the garden, Operation, computer games and miscellaneous toys that beep and play bad music a lot. At the last count there were five children running around our small living room. At the moment they are sat in a circle having a picnic.

One of the children in Sam's class at school informed his mother that their teacher, Mrs W, was going to spend the day learning about bugs. This puzzled the mother who had heard that the staff were attending a conference on best practice. “Are you sure?” the mother asked. “Yes,” replied the boy. “They are going learn about all sorts of bugs. Big ones, little ones, ones that fly and ones that sting.” It was possible, the mother supposed, but it seemed unlikely. “How do you know?” She asked. “Mrs W told us,” explained the boy. “She said she was having an Insect day.”

The Fabulous Adventures Of Wheelchair Man

Sometimes you paint yourself into a corner. I, like countless other parents around the globe, tell my children bedtime stories. And when I can't stand another Horrid Henry or Captain Underpants story I make one up with the help of Matty and Sam. By far and away the favourite of these made up bedtime stories are The Fabulous Adventures of Wheelchair Man, in which the eponymous hero and his two sidekicks, Speedster Sam and Destroyer, save the world and, not infrequently, the entire solar system. Wheelchair Man is a mild mannered father of two with a wheelchair that, at the press of a button, transforms into a flying, laser shooting Superchair. The boys, who chose their own hero names and powers, super speed and super strength respectively, assist their father in his missions to save the world and demand disabled access to the Fortress of Evil. All the adventures, alien invasion not withstanding, have to be fitted in around school and homework, or, as in the case of the current adventure, during school holidays, because saving the world is all well and good but if you can't read and write how will you be able to understand the instruction manual of a top secret space ship?

The stories have a somewhat eccentric narrative because both Matty and Sam like to fully participate in the telling, so anything from monkeys to red-armoured scorpion robots have to be incorporated. Matty, who has improvisational skills to dazzle Robin Williams, likes epic adventures with lots of battles and cliffhangers. Sam is currently most concerned with finding the exact right word to initiate the transformation from school boy to superhero. “Transformulation!” seems to do the trick at the moment. However, since each metamorphosis requires getting out of bed and spinning around whilst shouting the trigger word, we tend to limit the number of times school boy Sam is required to become Speedster Sam each episode.

Currently, the super team are on a remote tropical island helping a team of scientists to install 'the tower of electricity', which will help solve the worlds energy problems. They've already battled pirates and now, whilst exploring the island and rescuing a trapped monkey, have been caught in a deadly trap themselves. With Destroyer down a spike filled pit, Speedster Sam entangled in a net hanging from a tree, and Wheelchair Man faced with a ramp steeper than 1:12 (and a huge number of guns), can they escape? If yes, then how? Let me know, there are only a couple of hours until bedtime!

Old Dogs

I'm not a great one for making friends; despite my natural charisma and sparkling wit I tend to stick with what (and who) I know. It's one of the few areas of my life where I'm basically conservative. This has little to do with my disability. If someone can't see past the wheelchair then a meaningful friendship is a non-starter. Building a friendship can be easy or it can be hard work, but either way it requires time and some kind of emotional investment. There are plenty of people I know and like and am more than happy to spend time with, but I know that as time passes and circumstances change we will drift apart and move on with our lives. A friend, to me, is some one with whom I'll maintain a relationship with whereever I am and whatever I'm doing. The friends I do make I tend to stick with - over decades in several cases.

On Saturday two of my oldest friends (in every sense of the word) came to visit. If you've followed this blog from the early days you'll have come across them before. I've known Paul and Darren for more than 40 years. (We all find this highly disturbing and so in public pretend to be mere acquaintances who have only recently been forced into each others company.) I first met Darren at infant school when we were both 4 ½ and were joined by Jonny come lately Paul when we were 8. They drove 130 miles from Bristol (on Saturday that is, not when they were children) to visit me and, truth be told, I was happy to see them.

We slip in to each others company like putting on comfy old slippers and pick up on conversations that have been running for years. Yesterday, in the inevitable fit of nostalgia, we logged on to Friends Reunited for a 'where are they now` session and peeked in on the lives of long ago classmates. “She married him?! Why? She could have had anyone. She could have had me!” Or “It says he's a chef, but I saw him flipping burgers in McDonalds.” “He runs a hugely successful Gay nightclub in London.” “Who?” “Him” “Never!” and so on. Fascinating though the flicking through past lives was, “He may have been the class Lothario back then, but he's clinically obese now,” we soon realised that none of us had any real interest in renewing acquaintance with these people from our shared history. Don't misunderstand, if we bumped in to them on the street (or on remand in one case), we would happily stop to chat, go for a drink, and exchange email addresses (or cell numbers). But to actively seek to renew a lasting friendship, we all agreed, seemed pointless. Why? Are we all so smug and self content that we can afford to cast adrift our past? Hardly. Frankly it all seems soooo long ago that our paths diverged, that so much water has past under the bridge, times wing-ed chariot has been grounded due to rust. Basically, we're too old.

Earlier we'd gone out for MAN food. Living with an (albeit a very tolerant) vegetarian means that steak is rarely on the menu so we made our way to the butchers and purchased MAN sized rump steak. But being men of a certain age (and conscious of weight and cholesterol) we also bought salad.

Through all the years we have known each other we have never really talked about my disability. In a way they've grown up with it along with me. It is only because I've started writing this blog, they say, that they have started to get an insight in to my situation. The subject hasn't been avoided, it's not the elephant in the room, rather it has just never been an issue. They are the only two, apart from my family, who can remember me running, playing football and jumping from the top of the school hall climbing frame. We used to walk to school together, play in a band together (me badly, but I owned the only amplifier) and as kids were cub scouts together. We shared an idyllic holiday on a farm one glorious teenage summer together, we got drunk together and we did things that if I ever caught my children doing I'd half kill them together. We established the foundation of a lifetime friendship. And now, thanks to something as simple and as technologically amazing as a blog, it's funny to think that even after all these years we can still learn about each other. Old dogs, new tricks anyone?

Talking of new tricks. . .

If you would care to glance at the top right of this page you will see a new feature. 'I Read This Blog'. Now, let's face it, you can hardly deny that you are reading this blog, can you? So please please click the 'I follow this blog' line and join in. I love writing this stuff but it would be great to know someone is reading it apart from Paul and Darren who are afraid not to because l might reveal something awful about them. Oh, and I swear on Darren's life that I will not pass on your details to anyone, spam you or laugh uncontrollably at your user-name. (Rock God? You wish.)

School's Out

We have wound down to the end of term here. We've had sports day and the Nursery concert, the school disco and end of term reports. The last day of term is upon us.

Sports day seemed to consist entirely of relay races involving hoops and jumping over small hurdles. If the London 2012 Olympics has a 'Getting Dressed As A Waiter And Jumping Over Small Plastic Hurdles Whilst Carrying A Tray Of Cups Half Full Of Water' then Team GB are a dead cert for a Gold. The best bit was the Indiana Jones and the Temple of Doom race where (in relay of course) the child athletes crawled through tunnels, donned a hat, flicked a skipping rope like a whip, all the while being chased by an infant on a space hopper who was doing an earnest impression of a rolling boulder.

The Nursery concert had a horticultural theme, with all the children wearing paper hats in the shape of flowers. S wore a hat with an enormous sunflower type thing that totally obscured the poor child behind him who has therefore been effectively eliminated from the photographic history of this years nursery class. I can imagine his parents scanning the dozens of digital images taken and wondering if their darling one was actually in attendance. All the songs featured a flower, vegetable or life-cycle of an insect. All very sweet. (Except have you ever really thought about the rhyme 'Ladybird, ladybird, fly away home`?)

I am happy to report that the boys school reports were excellent The worse that was said of M was in the section dealing with Sports and Fitness where his footballing prowess was described thus: 'M is a team player with adequate ball skills', which I think may be the very definition of the phrase 'damning with faint praise'.

So school's out and the long summer holiday begins. I will let you know how they are going.

It's For You

Today S had his induction morning at the local primary school he will be attending from next October. He already goes to nursery at the same school so he is thoroughly at home in the building and because his big brother is already there he is positively chomping at the bit to get started. Polly took him along and handed him over to the tender mercies of Mrs Waddington and he trotted off without a backward glance. Polly had to stay and sit through the talk given by the Headteacher to new parents despite having heard it all before.

A few minutes in to the talk a mobile (cell) phone tunefully burst into life and everyone, some thirty or so people, patted their pockets and looked in their bags the way we all do these days. The Headteacher paused patiently for whoever whose phone it was to switch it off. Twenty nine people sighed with relief that it wasn't theirs and looked around for the guilty party. I don't know what you would have done, dear reader, but I suspect most of us would have frantically fiddled with the damned thing and switched it off as quickly possible, mouthing apologies and looking sheepish. Just possibly you might have glanced to see who was calling in case it was an emergency; and if it was you'd exit quietly and try to communicate telepathically to everyone how absolutely urgent the call is. What you probably wouldn't do is answer it and carry on a conversation at normal volume while your child's future Headteacher tries to explain the schools literary policy. Would you?

As Polly tells it, the Head carried on for a while against a background of a gentleman chatting obliviously to a friend or colleague. After a bit she stopped talking and waited for him to realise he was causing a disruption. He didn't. “Sunday? Yes, I'm free Sunday. How about at eleven? I think we should meet at. . .” And so on. She stared at him. Everybody stared at him. The Headteacher coughed politely. “Take the first left after The Rose and Crown then turn right in to Stafford Road. . .” She coughed again, louder this time. “There's a multi-story you can park in. . .” The Head finally cracked. “Excuse me,” she said. He carried on. “Excuse me!”

Everyone in the hall was by now back in their own school halls, all eight years old. Beads of sweat appeared on the forehead of the man directly in line of sight of the by now simmering Headteacher. Somebody poked the man on the phone. He looked up startled. “Hang on a second, mate,” he told the person he was talking to. “Yes?” “Perhaps,” said the Head, “you could take your conversation outside. . . so my talk doesn't disturb you.”

Someone next to Polly muttered, “I pity his kid. Their card`s marked.”

“Shh...,” said Polly. “You'll get us detention.”