How to be an Inspiration

Fifty and Counting

2011-07-20T11:45:00.000-07:00

Welcome to a 50th birthday celebratory blog posting written by me, using my trusty old stylus and an iPad. Extraordinary as it may seem I have made it to 50. There have been a number of occasions over the last fifteen or so years when that achievement had seemed a trifle optimistic and so it was with some relief that the 13th of July arrived without the accompanying sound of sirens and the flashing of blue lights. In fact the bulk of the day passed uneventfully what with the children at school and Polly having an appointment at the hairdressers. I had been told that my mother-in-law, Pam, had booked a table at a local Harvester and that we were all going out for a meal that evening. I was a little suspicious of this because Polly had put out socks for me to wear and so I suspected we were going somewhere slightly more upmarket, Pizza Express perhaps.

As we turned off Wimbledon Park Side I had an inkling that we were heading upmarket of even Pizza Express and that our destination was Cannizarro House, the hotel where Polly and I had spent the first night of our honeymoon nearly 18 years ago. On that occasion our little red self-drive hired van had squeezed between S class Mercedes and Porches to take pride of place opposite of the main entrance. This time our VW Caddy looked slightly less incongruous but I was grateful Polly had had the car cleaned recently. She apologised for the deceit and hoped I wasn't too disappointed that I would not be availing myself of an all you can eat salad bar. In fact, she explained, we were meeting Pam here for a drink and then she would take the boys on for a burger leaving us to have a cosy, intimate meal for two. (Polly and me that is, not Pam and me. That would be weird under the circumstances.)

On entering the hotel we were led by a member of staff away from the main dining room and through a private dining room laid out for a large private do and on to a patio overlooking the park. It was at that exact moment that I realised I had been throughly suckered for there before me was my entire family. My mother, whom I'd been told I would be seeing next week, was there. My brothers were there and both my aunts were there. All my nephews were there. Most surprisingly my sister Helena was there when she really should have been in Texas. She, Andrew and her two boys had all flown in especially.

We were served canapés on the patio and then retired to our dining room where we were served a pork and cherry pate followed by cannon of Romney Marsh lamb. We finished up with a chocolate birthday cake (with 5 symbolic candles) and petit fours. By the time coffee was served I was sated. It was a fabulous evening and I greatly appreciate the effort that was made on my behalf.

Oh, and in case you are interested, among my gifts I received the promise of a new flat screen TV and a genuine little apple tree already growing apples.

On Saturday Polly arranged a drop in birthday and house warming party. She had cooked enough chilli to feed an army laying siege to the Alamo, a greenhouse full of salad, a gallon or so of Pimms and three huge cakes. I sincerely hoped people would turn up or my choice of meals was going to be somewhat limited in the forseeable future. Thankfully people did come, many bringing plants for the garden including, to my delight, an ornamental Japanese tree, an Olive tree and a vine. We made my friends Paul and Harvey plant the trees because they were dressed in kilts and it was therefore both funny and useful.

I had a great 50th birthday. Thank you so much everyone who made it special.

Next we are off on holiday. Not to Wales and the rain but to Cypress and the Mediterranean sunshine. All we need to do is to get from Carshalton to Polis via Gatwick and Paphos with two children, my mother-in-law, a large electric wheelchair and enough medical equipment for a small respiratory ward. What could possibly stand between me and a relaxing holiday? I will let you know.

Thanks for reading.

The Right Move

2011-06-07T09:09:00.000-07:00

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

They Call Me Mellow Yellow

2010-10-04T07:06:00.000-07:00

Another reason for my summer silence was that I turned an unnatural colour. It was August, a week before we were due to go on holiday to Wales and the day before we were going to see the play Anne Boleyn at the Globe Theatre. Polly came home from work and asked me if I knew I was a shade of yellow. I pointed out that she was wearing a pair of lemon yellow shorts and that the sun was just reflecting off them. Yes, said Polly dryly, that's probably it, but just in case we'll pop up to the hospital on the off chance that it's not caused by my trousers.

Many hours later a doctor was trying to admit me to St Helier hospital because she was a bit concerned about some markers in my blood. After some tense negotiations she let me go home on the understanding that I returned first thing in the morning for further tests. But we have tickets to see Anne Boleyn at Shakespeare's Globe Theatre, I wailed. The doctor just sighed and said "you've gone yellow, Mr Deal. You have jaundice. Don't you think it's in your own best interest to find out why?"

The next day, despite my best efforts, they admitted me. I tried to explain that I am ill-suited to hospitals but the consultant dismissed my concerns with an airy wave of a manicured hand. "The pretty little nurses will look after you," he didn't quite say but might as well have done. The pretty little nurses were slightly less confidant when faced with my BiPap, wheelchair and need for hoisting, a profiling bed and an air-mattress. They looked at Polly and said, "You won't be leaving, will you?"

They wanted to stick me in a scanner so they could look at my liver but soon realised that this would be complicated in the extreme because I can't lie flat on my back without suffocating. The slightly less confident consultant agreed to try an ultra-sound, blithely unconcerned that the technician would have to achieve this while I stayed in my wheelchair. Unsurprisingly the results were inconclusive.

I spent an unhappy night plugged into a drip feeding some kind of antibiotic into my vein. The preceding two hours it had taken to get me in to the bed convinced the nursing staff and the more junior doctors that I would be better off at home since there was not an awful lot they could actually do for me. The consensus was that a gall stone had broken up and passed through my liver but since they weren't about to risk giving me a general anaesthetic so they could have a poke around they couldn't be 100% certain. Eventually the almighty consultant was persuaded by his underlings that I should be allowed to go home on condition that my GP organised regular blood tests. I fled to the car park still wearing my hospital gown.

Whatever was going on in my liver took a while to clear up because the markers in my blood that concerned the doctors remained stubbornly high for what seemed like a long time. I suffered some minor discomfort and felt a bit run down, missed a play, but, on the whole, reckon I got off relatively lightly.

Until next time.

Return Of The Blogger

2010-09-28T04:32:00.000-07:00

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.)

And So To Bed

2010-06-15T08:21:00.000-07:00

I'm writing this at 10.30pm which is well past my bedtime. Things were going so well. It had been a busy and fun weekend; we'd had the local carnival on Saturday where the boys had gone on the Ghost Train and climbed inside inflatable plastic balls to roll around a huge paddling pool. We'd watched reluctant birds of prey take part in a falconry display like sulky teenagers begrudgingly performing their party piece at the increasingly irate behest of their parent. We'd watched marching bands and cheerleaders put on displays helped and hindered by an intermittent fault on the PA. All jolly good fun. On Sunday the boys and I watched Polly run a 10k race around and around our local park which took up 65 minutes and 31 seconds of a sunny morning. The race was billed as a fun run which conjures up images of people dressed as Buzz Lightyear jogging alongside groups of firemen chained together waving buckets to collect coins for kittens stuck up trees. Forget that. This turned out to be an excuse for the local running club to put themselves through their paces under race conditions. There was a lot of Lycra on display. The male winner whizzed home in just 31 minutes and 39 seconds. Polly came in a very respectable mere 15 minutes after the fastest female.

Now the reason I tell you all this so past my bedtime is because I am awaiting an engineer to come and repair the hoist in the bedroom. The carers had come as usual to lay me down to rest and we were at the final stage of hoisting me from the wheelchair into the bed. The hoist, after some coaxing, lifted me airborne and over to the bed. What it would not do was to lower me down on to the aforementioned bed. I was left hovering like a fatigued Thunderbirds puppet two feet above my mattress. No amount of button pressing had any effect. The emergency release cord had mysteriously disappeared so I had no alternative but to dangle helplessly while Polly and the carers tried turning the power on and off and swinging me around a bit in an attempt to unstick whatever was stuck. After a few minutes I was beginning to feel distinctly uncomfortable, scrunched up in the sling as if I was a particularly large and unappealing fisherman's catch of the day.

Eventually, just at the point where I was considering having the straps of the sling cut through so as to allow me to tumble down on to the bed with a hope that the resulting dislocation of joints wouldn't be too painful, I had a brainwave. My super-duper wheelchair is capable of raising up several feet in the air. By carefully moving the hoist and therefore myself over the chair and by me performing a kind of wriggling contortionist act as the carers eased the sling off around me I would only need to fall inches. With a defiance of health and safety and with a bodily dexterity that would surely have earned me a place in the semi-finals of Britain's Got Talent I fell gracefully in to my risen wheelchair seat. Meanwhile Polly rang the emergency engineer.

The next day. . .

Well, the engineer came at 11.00pm, cheerfully declaring that he had had one foot in the bath when his supervisor rang. Apparently a previous engineer had fitted the strap back to front causing the whole kit and caboodle to get tangled up. It took him 20 minutes to undo the mess. It took Polly a further 20 minutes to transfer me to bed on her own, the carers having long since departed.

At least the emergency engineer turned up quickly and fixed the problem efficiently and without a fuss, unlike another company who have a contract to maintain my wheelchair. More details forthwith.

Until next time.

Watch The Birdie

2010-06-10T12:02:00.000-07:00

Once again Polly and I dragged ourselves over the speed-bump strewn roads of South London for me to attend the Lind clinic at the Royal Brompton Hospital. Once there, and having located one of the rare and obscenely expensive parking spaces, Polly vanished to have coffee with a clown doctor friend who lives conveniently nearby, pointing out that she hadn't taken a day off from working in a hospital to spend it sitting in another hospital, especially as she wasn't being paid. I sat reading and patiently went through the whole blood-letting experience so my blood gases could be analysed. Sometime later I was seen by a stereotypically efficient German doctor who informed me that my CO2 levels had fallen satisfactorily and that they won't need to see me again for a whole year. Polly reappeared and we stop-started our way back through the London rush hour just in time to take Sam to his first ever Beavers meeting.

I am, of course, delighted that all that faffing about in March when I had to stay at the RBH has paid off and that the changes of masks and BiPap settings have achieved what they set out to do, namely make me feel better. It is a slightly unsettling experience to be in a position where at least one aspect of my condition is improving rather than spiralling ever downwards. It is my ambition to confound all those health professionals who anticipate the worse. Viva Stephen!

On a completely different subject altogether, Polly, as you may remember if you have been paying attention, has spent months renovating my sisters house in Surrey while my sister runs what's left of the global oil industry. The house is still looking for a tenant and has a couple of agencies squabbling over who should manage the property. Last week we got a phone call from one of them to say that a bird had flown down the chimney and expired in the living room. “It's made a bit of a mess, “ they said. Sighing, Polly made her way to the house armed with some cleaning equipment to discover just how much mess a trapped magpie can make. It turns out that it makes a lot. She phoned me to say that the house looked like a scene from CSI Surrey. “What should I do with the. . . er. . . body?” she asked. I suggested she put it in a plastic bag. It was only on the way home that Polly realised the irony. She'd interred the magpie in a Sainbury's Bag for Life.

Until next time.

The Whole Tooth

2010-06-01T12:43:00.000-07:00

It is half term already and it seems as if the boys have hardly been at school since Easter what with in-service training days, bank holidays and elections. To compensate for the lack of orthodox education we have enrolled the boys in a couple of courses at a local theatre. Today Matty learned to be a stuntman taught by someone who worked on Sherlock Holmes. He came home confidant in his ability to be zapped by Harry Potter or to burst through a wall made of foam blocks. Tomorrow Sam is going to learn African drumming which given his complete lack of rhythm when playing Lego Rockstar on the PS3 might present his teacher with a bit of a problem. Sam has discovered that by hitting any random drum in any random order very very fast can get him a higher score than his equally tuneless brother.

I celebrated half term with a visit to a rather jolly dentist who poked and prodded and declared all well except for a dodgy wisdom tooth which needs x-raying with a view to having something done to it. I have to go back in a couple of weeks. Next time though it will be without Sam being an aeroplane around the surgery.

Right, I'm off to watch dancing dogs on Britain's Got Talent.

Say It Loud

2010-05-21T12:30:00.000-07:00

I am fully recovered from my visit to planet Noro I am pleased to say. Thank you for all the messages of sympathy and I'm sorry if you have suffered similarly.

Yesterday Nina, the speech and communication specialist, came for another visit. During our conversation last week I had mentioned that I often have difficulty making myself heard in noisy environments because I am unable to project my voice loudly enough. Nina was excited because she had a solution to this problem and this week she had brought with her a plastic case containing a voice amplifier. The device was about the size of an old fashioned Sony Walkman and came with a transdermal (throat) microphone. The EchoVoice has a built in speaker, an on/off switch and a volume control and that's pretty much it. The idea is that you can speak at a low volume and the device amplifies the voice through the speaker. Simple.

Unfortunately not only is the device the size of a Sony Walkman it also looks like it was designed by Amstrad and built in the 1980s being made primarily of beige plastic and with a speaker that wouldn't have been out of place in a transistor radio. As soon as I turned the volume up to a useful level my voice distorted as if it were being fed through a guitar fuzz box. It would be perfect if I wanted to announce the 2.37 from Paddington and not want anyone to understand but not so good for a chat in the school playground. Nina, who had tested the EchoVoice in her office, was disappointed by the reality in the field. I sounded like a rather breathy Dalek. Unfortunately not a very loud one.

Nina left to see if she would have more luck finding something to speed up my typing. I'll let you know how we get on.

Until next time...

Sick And Tired

2010-05-12T09:56:00.000-07:00

If you are unfamiliar with the term Norovirus you are exceedingly fortunate. I mention this because I am now on more than nodding terms with the little packets of DNA and RNA wrapped in protein. The last few days have not been particularly pleasant. I admit that I am self-diagnosing here, and I may be infected with a distant cousin of Noro but since my carers inform me that another of their clients has had the virus I think I'm justified at pointing the finger at the micro-parcel of misery.

Sickness and wheelchairs are not an ideal combination in anyone's book. I'm fortunate that I've had only a relatively mild case but it has still been distinctly grim. I'm over the worse but still feel a little delicate.

Today I had a visit from a Speech and Communications specialist called Nina who came to assess me. You will be surprised to hear that I do, in fact, have the ability to communicate but Nina plans to help me do it better. She is looking into technology that might help speed up my typing and also a system that could help me communicate in noisy environments. We will be meeting again next week. I will, of course, let you know how it goes.

Until next time.

Birthday Boy and Quiz Night

2010-05-09T08:03:00.000-07:00

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.

Can He Talk?

2010-05-05T12:38:00.000-07:00

I took the boys to their trampoline lesson last Friday at our local leisure centre. The lesson is held in a vast, echoing hall with four trampolines in one corner and a couple of badminton courts scattered around. While the children await their turn for their one-to-one coaching they tend to run around the hall chasing a ball or playing tag, shrieking at a pitch that seems to resonate with the with the natural frequency of the hall and at a volume to make your ears bleed.

In the course of this running around between bouncing Matty collided with another child and I looked up from my book to see him sitting on the floor nursing his left leg. A group of children had gathered round and one of the mothers had come over to check that there was not too much damage done. I put down my book and took up my parental responsibility and wheeled across the cavernous hall towards the group. As I approached I could see that Matty was going to live and I cancelled the explanation I'd mentally started rehearsing for Polly about how my eye had never left him. The mother looked up to assure me that there was no serious damage done. Just then a little boy said loudly and clearly, “ Mum, mum, I think that man wants something.” The mother replied “ Yes, he's come to check that Matty is okay.” The boy looked puzzled. “Why would he do that? “ The mother flashed me an apologetic smile. “Because he's Matty's daddy.” “Is he? What really?” The boy looked at me with open curiosity and then checked with his mother. “Are you sure?” “Yes,” hissed his mother looking at me and mouthing “Sorry.” The boy continued to look me over. “Can he talk?” I fixed him in the eye and said firmly, “Yes, he can.” “Oh,” said the boy, “that's all right then.” He then wandered off to play. His mother, obviously wishing the polished floor would open up beneath her, could only mouth “Sorry” again.

Until next time.

We'e All Going To The Zoo Together

2010-04-21T09:37:00.000-07:00

On Monday we went to London Zoo and contrary to my pessimistic expectation it didn't rain. In fact the weather was rather nice. We went with our friend C and her son, Matty's friend from school, taking advantage of the way we could all fit into our car because C's husband, an airline pilot, is currently stuck in Washington because of the Icelandic volcano.(Every volcanic aeroplane death cloud has a silver lining, apparently.)

London Zoo has changed since my youth. Gone are the elephants and Polar bears circling confined enclosures, going slowly mad. Instead the emphasis is on conservation with Gorilla Kingdoms and Rain Forest experiences. I particularly enjoyed the Night Life experience, which was not a disco but a chance to see all sorts of nocturnal creatures knocking about naturally.

I am slightly suspicious that many of the terrariums in the reptile house were empty despite signs saying they contained a Taiwanese Spitting snake, a Borneo Bouncing lizard or a Completely Invisible Sleeping newt. Occasionally I did spot a snake but it might quite easily have been a rubber one from the zoo souvenir shop. Telling me how cunningly they used camouflage didn't fool me.

Sam, having been to see the film How To Train Your Dragon was keen to see the Komodo dragons. He was disappointed to find they neither flew nor breathed fire but was slightly mollified when I told him how they could kill a buffalo. Matty found it difficult to choose a favourite animal, being torn between the giraffes and “those catty things with spots near the tigers.”

It was a good final day of the school holidays.

Until next time. . .

The Easter Break

2010-04-18T12:42:00.000-07:00

Okay, I admit it, I'm a bad blogger. I have failed to post anything new for what seems like an age. My excuse? It's the Easter school holidays and I have two ebullient boys to keep entertained. Oh, and it's been (mostly) sunny so I've been sitting in the garden reading and trying not to get sunburn.

Last week we went for a picnic in Greenwich park to meet up with my aunt Megan. We picked up my nephews, the boys cousins Oscar and Ollie, on the way and arrived in time for lunch. Obviously the glorious weather we had been enjoying took a break and we ate our Scotch eggs and buffet style chicken pies in a light drizzle that slowly progressed to a torrential downpour. Fortunately I had my ultra-stylish wheelchair raincoat with me which Matty says makes me look like a toddler in a pushchair. At least I was dry. We took refuge in the fabulous Royal Observatory, enjoying the historical setting and the state of the art interactive displays before watching a show in the Planetarium.

To help the boys burn off some energy we enrolled them both in an intensive trampoline course for the last week. Matty, in particular, has shown an aptitude for the sport and attained his grade 5 certificate. We have also replaced our broken tiny garden trampoline with a slightly bigger unbroken one. Even as I write Sam has just bounced off it to swing on the washing line in an attempt to create his own theme park ride. We will now need to buy a new rotary dryer.

It was also this week that our washing machine chose to break down, making horrible grinding noises and refusing to perform its raison d'etre. We emptied our piggy bank and ordered a new one. It was then that our friends Catherine and Stuart told us that they had inherited a virtually brand new washing machine and it was sitting idle in their shed and would we like it. Would we ever. Stuart even came round and plumbed it in. This saved us a small fortune and we are very grateful. Now, has anyone got a fridge/freezer?

Now as the holiday draws to a close, the boys have an inset day tomorrow so have one extra day off school. We are taking them to London zoo so you can expect it to rain.

Until next time.

A Mile In Their Shoes

2010-03-31T03:43:00.000-07:00

On the 21st March Polly, Sam and Matty ran the Sports Relief Mile along the Embankment in London. It was something of a last minute affair, Polly only having signed up a couple of days before hand, so she only committed to raising £50 for the charity. They all ran the mile with ease, circumnavigating Eddie Izzard (who was running yet another full marathon), and completing it in about 10 minutes. (Polly insists they could have run it faster but there were too many baby buggies in the way.)

Thank you to everyone who sponsored the three of them, we really appreciate your kindness, generosity and support The money goes to support important projects here in the UK and in some of the poorest countries in the world. You can find out more at http://www.sportrelief.com/ and if you would like to retrospectively sponsor Polly and the boys you can at http://www.mysportrelief.com/dealboysrunning . I am delighted to announce that the total raised so far by the three of them is £380. . . so far.

Until next time.

Laser Death Pizza Extravaganza

2010-03-24T08:59:00.000-07:00

I have been to hell and it is in Croydon. All right, perhaps I exaggerate, but not a lot. On Saturday we had Matty's 10th birthday party which was held at the Laser Quest franchise in the Colonnades on The Purley Way. From the outside the building looks like a rather bland office block but inside it is designed to resemble a Mississippi steamboat, I kid you not. The steamboat illusion does not pass deep inspection and is soon revealed to be mostly a front for an extremely noisy amusement arcade replete with the latest shoot-'em-up games called things like Zombie Killer 4 and Death Jungle Zone 3. Each game comes with at least one machine gun and absolutely no volume control. Interspersed with the death dealing mayhem machines were driving games that gave very little consideration to the highway code called Death Racer VII or Mission Road Kill X or such like. Also dotted around the Stygian hall were several non-working pool and air-hockey tables serving primarily as surfaces for teenagers to lounge against and as anti-wheelchair obstacles. The thermostat was set to 'boil blood' level but they economised by having the lighting set at a level that required an infra-red night scope to see more than a few murky feet. Along one side of the arcade was the Laser Quest zone where groups of identical looking pre-teens loitered whilst awaiting their turn to dispense laser justice upon each other.

Matty and his micro-army of 9 laser armed friends vanished into the kill-zone to enact Armageddon while I hunted vainly for a cup of coffee. Eventually I took refuge in the party room we had reserved and was at last able to have a conversation that did not require shouting over the death throes of machine gunned zombies. After an hour or so Matty's army retired from the battlefield to devour hot-dogs and relive successful ambushes. Oh to be 10 again.

On Monday it was Matty's actual birthday and we took him (and Sam, obviously) out for tea. You put your taste-buds in the lap of the gods when you let a 10-year-old choose the restaurant you dine in, so it was with a sense of 'it could have been worse' that I trundled into Pizza Hut. I am not a huge fan of Pizza Hut so I was pleasantly surprised to find on the menu some relatively interesting looking Tuscani style pizzas. I settled on the Pollo Portobello with the “thinnest, lightest, crispiest pizza base” and “recipes inspired from the heart of Italy.” Perfecto! Unfortunately Matty had been swayed by the advertising that induced him to try a pizza surrounded by “a ring of 28 individual doughy bites bursting with cheese.“ Such a divine culinary experience only comes with pizzas the size of truck tyres and so he pleaded with me to share a vast meat-feast deep pan pizza. I closed my menu with a small sigh and said that I'd be delighted to share. It was his birthday after all and considering the years of pleasure he has given me it was a tiny sacrifice. As he sat, grinning from ear to ear, chewing on peperoni flavoured stringy bits, he thanked us for taking him out to 'a posh restaurant'. Is it any wonder I love him?

PS - Only have the ring of 28 individual doughy bites bursting with cheese if you enjoy cheesy flavoured chewing gum.

Until next time.

Spring Is Springing

2010-03-15T07:33:00.000-07:00

I feel a little as though I am coming out of hibernation. As the weather improves and the temperature slowly climbs I have been able to get out a little more. My mother came to visit and Polly and I took her for lunch at the local garden centre (rock n roll, hey). Then at the weekend I went to collect Sam from a party and also chased the boys around the park on the their bikes. (This took a while because Sam can only ride in a straight line and crashes dramatically at the slightest curve.)

Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.

I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”

Until next time.

The Boy In The Bubble

2010-03-06T04:33:00.000-08:00

On Wednesday I was finally admitted to the Royal Brompton Hospital in London for them to try and address the problems I've been having with my blood gasses and with the BiPap alarm going off umpteen times a night. I was poked and prodded by a doctor who also (on the second attempt) took blood and analysed it. My CO2 levels are too high and as a result my blood is turning acidic, which is not as cool as it sounds. Time to take action before I turn into a blood-burning super-villain.

I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.

The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.

When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.

Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.

Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.

Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.

Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.

In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.

When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.

I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.

Until next time. . .

Cometh The Man

2010-03-01T06:04:00.000-08:00

A few weeks ago we were assessed by a surveyor who came and told we have a condensation problem in out flat. We were aware of this because we had spotted the patch of black mold growing in the corner of our bedroom and behind various wardrobes. The surveyor, a nice woman, surveyed the BiPap, the electric bed, the air-mattress, the hoist, the wheelchair, the battery charger, the cough-assist machine and nebuliser, and explained that we have too much equipment in too small a space. The air, she said, could not circulate and we need more space. We are not, she said, adequately housed. Contact your MP (Member of Parliament), she advised. And, having exhausted other avenues and being very suggestible, that is exactly what we did.

To that end, last week, we were visited by Tom Brake, Liberal Democrat Member of Parliament for Carshalton and Wallington at home. He came and drank a cup of tea, declined a plate of biscuits, discussed the forthcoming general election and listened attentively while we explained the situation. We showed him a folder full of letters from medical type people saying we need more space. We presented to him two growing children. We told him of some the problems we face on a day-to-day basis. We explained how the cramped conditions made it difficult for carers to work safely and how they had to squeeze past the end of the bed to perform their duties. Tom nodded in all the right places and said that although he could make no promises he would see what he could do.

A few days later Tom sent us a letter summarizing our meeting. He asked us to grant authorisation to someone on the council to access our files and in addition to following up on our request for rehousing and, in the short term, a suitable hoist. made this rather surreal recommendation -

“allocation of carers who are small enough to squeeze into the currently very confined space.”

This is a splendid example of parliamentary lateral thinking. We don't really need larger accommodation we just need smaller people. Brilliant. It seems an odd thing to focus on but that's probably why I've never sought public office, I just don't have that capacity for problem solving.

Obviously I will keep you informed of any progress. I'll also let you know if I see any signs of carer shrinkage.

Until next time.

Breakdown

2010-02-22T12:51:00.000-08:00

I had a breakdown in the bathroom early last week. It took three women to get me out of there. It all started when I was transferring from the toilet back to the wheelchair. The screen on the wheelchair controller flashed up a message informing me that there was a 'brake error 1301'. The wheelchair refused to move, ceasing to perform its primary function and becoming simply a chair. A chair located in the bathroom. The two carers and Polly manhandled the chair out of bathroom and into the living room by disengaging the motor and heaving and pushing the ungainly machine using brute force. Polly referred to the manual and looked up 'brake error 1301'. The manual helpfully told her that there was a problem with the brakes. Armed with this inciteful information Polly poked and pulled various wires and connections to no effect. Eventually she removed a panel on the back of the chair and prodded connectors hopefully. Suddenly the chair sprang back into life. The carers stood in open-mouthed appreciation of her technical abilities. Polly Deal, the 4th emergency service.

I'm having problems writing at the moment which is why these posts are a bit short and a bit spaced out. Normal service will be resumed soon, I hope. Thanks for your patience.

Still Bumped

2010-02-15T08:16:00.000-08:00

In case you were wondering, I'm not in the Royal Bromton Hospital. I was bumped again, presumably by a very sick person whose need was deemed greater than mine. Because this week is half-term and the boys are off school I declined the offer to wait in all week on the off-chance that a bed would become available. Apparently we are going to try again in the first week of March, by which time I will be considered a priority.

Kolapo, my main carer is off work at the moment with an injured back. This means I'm seeing a lot more of other carers who are usually more irregular. Kolapo, who works seven days a week for 50 weeks of the year, usually takes the lead when it comes to my home-care, and so, in his absence, I am left to the tender ministrations of carers who have less experience when it comes to dealing with me. Fortunately, first among them is Nina who is supremely competent and reassuringly sensible. Nina is supported by Maria who is very sweet but reminds me a bit of Dory from the film Finding Nemo. However many times she comes, and she has been here many many times, it is always as if it is her first ever visit. The operation of my wheelchair, my BiPap and even my electric toothbrush remain a complete mystery to her and she always approaches each encounter with them with what can best be described as enthusiastic confusion. She mutters a constant stream of Spanish while she presses buttons in random combinations until something happens. She is an extremely gentle soul, and so being washed by her is akin to being mugged by a butterfly. Another irregular regular carer is Collette who keeps African time, prays over me and is trying to teach me French. Collette is great fun, mad as a box of frogs, but great fun. I am very fond of all my carers and appreciate each of their idiosyncrasies. My life would be much harder and a lot less interesting with out them.

Polly has been horribly ill for the last few days and had to retire to bed for more than 48 hours. She is much recovered now but still a little wan. Sam was terribly sympathetic but was worried about who was going to cook his tea. He looked at me with deep suspicion before handing me the phone and suggesting Pizza Hut.

My hand is hurting so I'll have to stop writing now. Until next time...

In Limbo

2010-02-09T12:41:00.000-08:00

Theoretically I'm off to the Brompton tomorrow but I won't hold my breath (they get really mad if you do that). I'll keep you informed of my progress or lack of it. Meanwhile I'm in a kind of limbo. Ho hum.

Bumped

2010-01-31T04:31:00.000-08:00

Apologies for the lack of posts over the last week or so. What can I say? It's January. It's cold, grey and generally miserable. If there was any justice in the world I would be in Mauritius.

I am not, incidentally, in hospital. I was due to go in to the Royal Brompton on Tuesday so they could fiddle around with my BiPap settings and play with my mask in an attempt to sort out my CO2 levels. However I was bumped from my rightful bed by some sick person who was deemed to be in greater need than me. I was all psyched up and ready to go, ebooks downloaded and iPod charged, when the bed manager rang to say don't come.

Polly had to cancel her 'girls night' and we are both resigned to another couple of weeks of disturbed sleep with the BiPap alarm going off on average 17 times a night. It is worse for Polly because the high-pitched alarm doesn't always wake me but it does her. She has taken to kicking me in the back so we can share the experience. The sooner we can get it all sorted the sooner my bruises will heal.

I'll keep you updated.

Still Ticking Along

2010-01-21T07:06:00.000-08:00

Yesterday I made the trip to Kings Hospital for the specialist FSH clinic with Dr Rose and his team. Once we had negotiated the near impossible task of parking within seven miles of the main entrance and then found our way through the maze of corridors to the Therapy Suite we were greeted by an enthusiastic volunteer who presented us with a pile of questionnaires designed to reveal my innermost concerns regarding my condition. No sooner had I started answering questions about my sleep patterns than we were whisked off to the cardiac clinic for an ECG.

The woman who performed the ECG was one of those people who wants to tell you all about someone they know who is in a wheelchair. In this case we were regaled with the tale of her nephew who had been run over by a drunken vet in Ireland, paralysed and then mugged by four Polish men in an alleyway in Dublin of his Christmas bonus. I think the subtext was that I'm lucky to only have Muscular Dystrophy.

A little later we squeezed in to a consulting room with Jo, the physiotherapist, Chris, a post-doctorate researcher studying MD, and Dr Rose himself. The purpose of the consultation was to review progress since the last one six months a go and to anticipate what was going to be required in the future. Everyone admired the super-duper wheelchair which they had been instrumental in getting funding authorised for and bemoaned the lack of progress regarding our housing situation. We discussed various problems I've been having with my hands and everyone looked at my toe. I was rather alarmed by their reaction to it. Words like 'tissue viability' were used. I was firmly told to get my GP to look at it.

Various technological ideas were mooted to help with my increasing difficulties with communication and I'm being referred to the appropriate specialists.

On our journey home I found myself in reflective mood. These sessions are of immense value but they force you to confront the reality of the situation. My condition is degenerative and, in reality, this means I am forever playing catch up with myself, compensating for physical abilities lost forever. I am not a particularly 'head-in-the-sand' type person but sometimes anticipating the future is difficult. Sometimes it makes me want to pick a fight with four Polish men in an alleyway. Mostly though it focuses my attention on what needs to be done so that my quality of life remains as spectacularly high as it is. I'm not exactly looking forward to some aspects of what is to come but, all things considered, I'd rather know and be prepared than be caught by surprise and left wallowing. You can't anticipate every change but some are inevitable and, as such, forewarned is forearmed. I'll drip feed you the details as and when they occur.

I'm mentally preparing myself for what I hope will be a very brief stay at the Royal Brompton Hospital next week while Dr Simonds and her team try to get a handle on my blood gases by fiddling with the BiPap overnight. My beloved is so distraught at the thought of my absence that she has arranged for a 'girls night in' with a whole coterie of friends to help her cope emotionally.

If I can get a Wi-Fi signal in my ward I'll blog you from there. Until then, thank you for reading.

Toeing The Line

2010-01-12T09:38:00.000-08:00

There is little to write about at the moment as I am effectively snowbound. The heavens have dumped a largish amount of the white stuff upon us and rendered the local pathways wheelchair proof. Dancing On Ice could be broadcast from the Westcroft Centre car park, across which I would have to traverse if I wanted to get to the school or village. The boys had two snow days off school last week and have since been watching the weather forecasts with the same attention they usually devote to Spongebob Squarepants.

Apart from a slightly infected big toe I am well. Polly keeps looking at the toe and muttering that it is the wrong colour and doesn't match the other nine. It doesn't hurt unless someone pokes it so I haven't been particularly worried. Even so, to stop her worrying (fussing) I had one of the district nurses look at it and she put a dressing on it that makes it look like I'm wearing a finger puppet on my foot.

To add to the surreal nature of my life, this morning I ate my breakfast to the accompaniment of Polly having a Ukulele lesson and strumming 'She'll Be Coming Round The Mountain' in the chord of C. Her tutor has gone away to learn how to play 'The Wheels On The Bus' so he can teach her next week.

That's it for now. Until next time.

A Week In The Life

2010-01-06T07:53:00.000-08:00

We are now a week into 2010 and this is my first post of the new decade. It has been an interesting week, here are some of the highlights.

On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.

New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.

On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.

January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.

In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.

January 5th – the boys go back to school.

January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.

So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.

Until next time.

That Was The Year That Was

2009-12-30T06:20:00.000-08:00

As we slide down the razor blade of life (as Tom Lehrer had it) into 2010 I am compelled by convention to look back on 2009 with consideration.

I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.

Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.

A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.

Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.

Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.

So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.

Until next time...

Blackout - Call 999

2009-12-23T04:04:00.000-08:00

I feel sufficiently recovered to tell you about the events of Sunday night. Those of a nervous or sensitive disposition should skip this post and find something nice to do like decorating a pine tree.

Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.

By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.

And then there was a power cut.

The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.

My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.

Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.

Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.

Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.

By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.

Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.

I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.

Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.

I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.

Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.

I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.

This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.

Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.

Seasons greetings. Until next time...

Padlocked

2009-12-14T09:35:00.000-08:00

So there I was, bossing the children around. “Clear the table, Matty, it's tea time.” “Sam, put that toy away.” Polly was attaching the Neater-Eater arm. The chilli was ready. Strictly Come X-Factor was on the telly. I went to move backwards so we could move the table ready for tea. My wheelchair wouldn't move. I tried again. Nothing.

It is a law of the universe that electric wheelchairs only break down at the weekend. Stephen Hawking, in his seminal work, A Brief History of Wheelchair Related Inconvenience postulates that the relative complexity of a wheelchair multiplied by the disabled persons dependency on the chair divided by the distance a service engineer will need to travel and factored by the time any office of any person able to facilitate a repair closes will mean that a wheelchair will breakdown after 5:30pm on a Friday and before 8:30am on a Monday. The Hawking equation therefore determined that my chair broke down at 7:00pm on a Saturday.

I pressed any number of combinations of buttons to no avail. The LCD screen on the controller had a picture of a padlock on it which summed up the situation very well. Eventually we called SERCO and explained how stuck I was. We declined the offer of an appointment on Tuesday (between the hours of 8:30am and 6:00pm) and reiterated that I was very stuck. My chair, when working is a marvel of technology – when not working it is a very very heavy armchair with a substantial human male in-situ. There are rockeries with more mobility.

The problem with engineers from SERCO who, on the whole are nice, competent people, is that they do not have specialist knowledge of every model of wheelchair. It is not realistic for them to know the ins and outs of every make and my chair is very high spec and therefore relatively uncommon. As a result Polly and I did not hold out much hope when we were told that the duty emergency engineer was on his way. Still, at least there would be an extra person around to help push.

Meanwhile we ate tea and watched Stacey be voted out of the X-Factor final. We also started ploughing through the vast amount of paperwork that came with the chair. I dimly remembered reading a manual that appertained to my particular controller. Several manuals had pictures of controllers that bore no relation to the one I have, with its smug picture of a padlock displayed on the screen, but eventually, in a folder filed under U for Unlikely to be needed, we found a booklet with some details that roughly corresponded to mine.

To unlock the padlock, which we were informed was a necessary security feature, we had to move the joystick in a particular sequence of movements. No one was more surprised than me when this worked and my chair was restored to full working order. We immediately phoned SERCO to cancel the engineer. Unfortunately he was already committed and wasn't going to return to the depot without a signature on his paperwork. He duly arrived and sucked air through his teeth whilst examining the controller in a manner meant to reassure us he had seen this model before. According to him, the padlock security feature is to enable the wheelchair user the ability to lock the chair whilst they pop into a pub or an inaccessible shop. This makes perfect sense. Anyone who needs a multi-thousand pound high specification wheelchair often wants to get out of it to wander around shops or to get some liquid refreshment. He also informed us that the padlock could be activated by nearby magnets or electrical devices like mobile phones. Perhaps you can begin to see why I don't have complete faith in the abilities of SERCO engineers.

To be fair, the engineer was very gracious about being called out on a wasted mission. We signed his paperwork and promised to keep the electric wheelchair away from anything electrical. I also assured him I'd use the padlock security feature whenever I got out of the chair to go shopping. Now, if only I can work out why the bloody thing activated in the first place.

Until next time...

The True Meaning Of Christmas

2009-12-10T11:48:00.000-08:00

As any parent knows, 'tis the season to watch your children dress up as angels or shepherds or, in my case, angry chefs. Yes, I've been to see Sam in the infant school nativity play this afternoon. The age old story was told this year using the conceit of Ned the donkey seeking out the true meaning of Christmas.

There is something wonderful about sitting in a crowded school hall, searching the assembled ranks of costumed children, who are in turn searching the audience, for that spark of mutual recognition. The surreptitious wave, Sam's grin and the look of possessive joy and slight relief that daddy is there to see him perform will be a memory that forms one of those great pleasures of parenthood. He is dressed in black and white, wearing a chef's hat, and is only partially obscured by the piano. As Ned searches for the true meaning of Christmas, Sam and his band of angry chefs prove that the festive season is not all about food, with my boy delivering his one solo line, “With flour in my hair!” loudly and clearly. It is up to other parents children to dismiss toys and even Santa as being the essential element of Christmas but my attention is focussed on my child as he sings and dances his way towards the nativity. Eventually we learn that Christmas is about a baby, born in a stable and, as demanded by tradition and grandparents in the audience, Away in a Manger is sung.

Last week I trundled over to the school to see Matty in the junior school performance of Panto-Pandemonium, a witty subversion of traditional pantomime stories. Matty was a member of the vast choir that supported the big kids of year 6 who got to do all the acting. Next year Matty will be one of the big kids of year 6 and he is already angling for a major role. He lives in genuine terror that the school will change its tradition and next year the acting will be shared out amongst the years and as a result there will be less starring roles for him to audition for. Matty is determined to be an actor and sees next years Christmas show as his potential big break.

We are now well into the festive season as far as the school is concerned. Tomorrow the boys have their Christmas dinner. I may be persona non grata after Sam told his class that daddy says sprouts are the devil's food. Next week they have their class parties. Matty has to take six satsumas. I'm sending Sam with a bag of sprouts.

Until next time.

Fair's Fair

2009-11-30T08:39:00.000-08:00

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.

Me Versus The Blackberry Storm 2

2009-11-23T10:38:00.000-08:00

I am one of those fortunate people who knows instantly what to do when faced with a computer or technology based problem. I call my friend PJ and beg him to sort it out. However, occasionally I am the person called upon to impart wisdom on matters technological. I swear that I have never pretended knowledge of anything more complex, computer-wise, than an abacus but sometimes people mistake my intense concentration when I am writing for computer literacy. My mother, who has one son with a doctorate in computer science who runs a highly successful software company, still prefers to ask me to solve her internet connection problems. My advice usually goes as follows: “Turn everything off, mum. Wait five minutes and then turn everything back on again.”

Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.

Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.

The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.

Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.

The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.

I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.

Until next time.

When Polly Gets Flu

2009-11-17T07:38:00.000-08:00

Polly has had flu. Now whether this was the infamous Swine flu or your common or garden flu flu we are not sure. In fact no one is sure, not the NHS helpline, our doctor or indeed, the several other people who have suffered similarly.

Now I love Polly. She is wonderful in so many ways I do not have time to list them all. She (and by extrapolation the children) is absolutely the best thing ever to have happened to me. She is kind, clever, caring and funny. But she is rubbish at being sick. Firstly she believes she is completely indispensable to the running of the universe and that the whole of creation will fall apart if she takes any time off. If she is enforced to go to bed for a while she gets annoyed if the world manages to continue orbiting the sun without her personal assistance and guidance. If, however, the universe somehow manages to struggle on without her, she gets incredibly annoyed if it doesn't tidy the living room in exactly the way she would have done.

Polly has to feel really ill before she relinquishes control of the cosmos. On this occasion she was ill enough to go to bed during the day which is something she begrudges deeply because she 'should be doing other things'. 'Doing other things' means doing all the things that mummies do, children's entertainers do, clown doctors do and rulers of the universe do.

Polly being ill is nothing compared to Polly feeling a little bit better. Polly very reluctantly cancelled a gig at the Royal Marsden but only because flu, cancer, chemotherapy and sick children are a volatile combination. However, Polly feeling a little bit better essentially means Polly catching up with all the things she feels she hasn't done as well as continuing to do all the things she would normally be doing and perhaps a few other things in case anyone suspects her of idleness. Lesser mortals, such as myself, are left wallowing in her wake as she bakes cakes for cub fund-raisers, manages my sisters house restoration, entertains at 4 year-old boys parties, makes Christmas cards and oversees the middle-east peace process. Suddenly she will complain of being tired and look at me as if it is entirely my fault.

At night, my usually delightful bedtime companion becomes an irritable, tetchy, scratchy sleepless nightmare. I cannot move, breathe or mumble sweet nothings without bringing about the kind of reaction that is usually a precursor to all out war. Every creek, every variation in light, every child's nightmare, is my fault. Will no one let her sleep? Don't I realise that she is sick?

The problem for Polly, and no doubt mothers everywhere, is that just because she is ill does not mean that life stops to compensate and allow her time to catch up. I do my best to help make things run smoothly but honestly, is it too much to ask that we don't run out of proper coffee? I've had to drink instant. Yes, when Polly is sick we all suffer. Thank God it's only woman flu.

Until next time.

Take It On The Chin Strap

2009-11-12T09:52:00.000-08:00

Now the gods of medicine mock me.

On Tuesday I made my way, with Polly, to the Royal Brompton Hospital for a routine check-up. Once again I sat in a corridor and waited for people to take blood from my ear and perform arcane analysis of it. And then we waited some more. Eventually a doctor wandered down the corridor clutching a large folder of notes and summoned me to a consulting room. (Actually a corner of a ward.) He glanced at the slip of paper with the blood gas analysis on it and frowned. “Your CO2 levels are a little higher than we'd like,“ he said.

Because the alarm on the Nippy ST ventilator kept going off two or three hundred times a night we changed to the Harmony which is blissfully alarmless. Unfortunately the Harmony can not generate sufficient pressure to clear the build up of Carbon Dioxide in my body even when working at its highest settings. I need the raw power of the Nippy. The choice I am presented with is slow death by CO2 poisoning or a quick death from Polly when she cracks from the strain of lack of sleep due to the Nippy's alarm. Neither prospect appeals. The doctor decided that the best thing to do was to admit me for a few days in January and experiment with a range of machines and masks whilst I am being carefully monitored. Okay, but in the meantime...?

The Nippy's alarm goes off because the pressure drops when I enter deep sleep and my weakened facial muscles relax. The idiot machine thinks there is a leak in the system; which there is; me. The solution? Seal the leak. How? Use a chin strap. (Note to Blake – Okay clever clogs, you were right back in September.)

At this point the gods of medicine start to giggle. Using a BiPap ventilator mask already makes me look like an ill-prepared Scuba diver. Now, with the chin strap, I look like an ill-prepared Scuba diver with comedy toothache. Or worse, a Victorian corpse. The white strap wraps around my head making me look like Jacob Marley on his way to the Great Barrier Reef. If you struggled very very hard you would fail to come up with a less dignified look.

Until next time, if I survive the humiliation.

A Long Dark Midnight Snack Of The Soul

2009-11-10T11:27:00.000-08:00

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.

Less Pain And Wheelchairs

2009-11-06T07:11:00.000-08:00

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.

A Pain In The Back

2009-11-03T06:23:00.000-08:00

This is my first post for a week. There is a reason. I've hurt my back.

My expedition to climb K2 in a wheelchair was going well until I had to traverse a ledge that required swinging on a rope some 30 feet across a vertical drop of 400 feet. Suddenly the 3 year old son of one of the Sherpas kicked his red ball over the edge and ran to follow it. As the child began to tumble I had a spilt second to adjust the settings on my whiz-bang new wheelchair to rescue mode and change the direction of my swing. I plucked the child out of mid-air and kicked the ball back to safety. But as I handed the boy back to his grateful father the wheels on my wheelchair lost their grip on the ice and I felt myself slipping over the ledge and beginning to fall. Instinctively, I reached for the safety rope but it was too late and I fell the 400 feet towards the rocky terrain below. Fortunately my time in the Parachute Regiment had taught me how to roll with the fall and absorb the impact. Even so, I suffered a back strain.

That is what should have happened to be commensurate with the degree of pain I have suffered. The truth however is somewhat more mundane. Polly was helping me adjust my position so I could go to the loo. Suddenly the headrest on my chair gave way and I slipped back and sideways. I didn't slip far and although I was surprised and a little shaken no harm was done. Or so I thought. We fixed the headrest and I forgot about the incident. Until a few hours later.

In recent weeks I have been able to cut down on my pain relief medication by at least 80%. All that was undone by the time I whimpered my way to bed. The next few days were excruciatingly painful. I was unable to even lean forward enough to sip coffee through a straw. Being hoisted here, there and everywhere several times a day wasn't helping.

Being male I gritted my teeth and manfully bore the pain uncomplainingly until Polly had had enough and rang the doctor. He wanted to check it wasn't kidney stones or something more exotic than a strained back and then prescribed Diclofenac Sodium 50mg, an anti-inflammatory pain killer. Today I feel marginally better. At least I can drink coffee without nearly passing out. And I can wield a stylus once more.

Not Just Any Cake

2009-10-27T13:23:00.000-07:00

During our foray to the pub on Friday (see last post), Bob and I made a tentative arrangement to go to the cinema this Monday. I remembered this on Monday morning and checked with Polly that this would okay and that she hadn't organized anything exciting, like the weekly food shop, and would need the car. Rather to my surprise she was delighted that I was going out and assured me she could manage, briefly, in my absence. Just as I was checking the listings and choosing between Saw VI and Zombieland she added that the boys would enjoy a trip out with their dad as well. I tried to explain that I thought Sam was a little young for the fiendish puzzles of Jigsaw, but if she was sure. . .

Which is how I ended up seeing Up in 3d with Bob, his wife Antoinette and Matty and Sam. Despite a severe lack of the undead and a complete absence of grotesque killer puzzles Up is a brilliant film and neither Matty or Sam bemoaned the shortage of blood. Instead we all sat entranced, enjoying a rare thing in the two a penny world of CGI animated output, a good story, well drawn characters who ooze humour, charm and warmth, and a whole series of comic set pieces that are both funny and visually pleasing, especially in 3d. I defy anybody not to love Dug, the Golden Retriever.

When I got home with two burger-stuffed boys, way past their bedtime, I found a sightly fractious wife. Polly had been baking a cake. Now it must be said that Polly is an excellent cook and has baked countless cakes over the years. This cake, however, is a cake with baggage, a cake with history. This is the Deal family Christmas cake, a recipe handed down the generations. This is the cake that until this year my mother has made every year for as many Christmases as I can remember. A cake that is so complicated and takes so long to prepare that my mother can no longer stand to bake it. I mean that literally, mum has arthritis. The mantle has now passed to Polly. It had taken her over three and a half hours to mix and prepare. Muttering grimly about 'your family' she told me she would have to set the alarm to go off at 1:30am to take it out of the oven after its five and a half hour baking time. She swears that next year she will make a chocolate log but I'm sure she will have calmed down by next October.

At 1:30am the alarm went off and Polly staggered into the kitchen. I was asleep before she crawled back to bed. I learned in the morning that the cake needed to cool a further 40 minutes before it could be removed from the tin.

All I can say is that it is a VERY nice cake. It has to be decorated in a certain way too, but I'll mention that next time I go to the cinema.

Until next time...

In A Glass Box

2009-10-24T12:09:00.000-07:00

Last night Polly, the light of my life, had been invited to perform a couple of pieces at a local arts centre as part of an evening of monologues called A Moment To Mutter. Being a thoroughly supportive husband, and appreciative of the high quality of cake served at this establishment, I agreed to accompany my beloved to the show. And since we hadn't organised a babysitter we gave the boys a late pass and took them with us. We even remembered, at the last minute, to cancel the carers.

The Lantern Arts Centre is located within part of the building that is the monolithic Raynes Park Methodist Church in south London. Over the years it has evolved from an enthusiastically amateur underfunded enterprise into a slickly professional underfunded enterprise. On Friday nights they put on, or invite artists to perform, shows in their Café Studio, a smallish theatre on the 3rd floor. After much fund-raising and lobbying for grants, a few years ago they installed a lift (elevator) which finally made the centre fully accessible to all. The management at the Lantern Arts Centre are committed to inclusivity as is testified to by the huge range of shows and services they put on and provide in and around the local community.

I have ridden the lift to the Café Studio many times in the past, both as a performer and as a member of the audience, I don't have a particular fear of lifts, and this one is essentially a glass box with minimal claustrophobic potential, but even so, my heart rate goes up a little as the surprisingly fragile seeming glass door closes behind me and an electric motor starts to whine. We had sent the boys haring up the flights of stairs that created the stairwell through which the lift rose and Polly and I had entered the lift and closed the glass door behind us. Polly pushed down on the large UP button and held it down and the electric motor engaged. The tone of the electric motor was not that of a contented piece of machinery going about it's business of perpendicularly raising passengers forty or more feet into the air in a safe, reliable manner, but was rather that of a straining put-upon cantankerous piece of groaning mechanical misery. Some eighteen inches into our alarmingly juddery assent Polly removed her hand from the aforementioned UP button and we came to a halt.

People peered over banisters at the new exhibits and I wondered if they were expecting some kind of show. Then it came to me, I could be a mime trapped in a glass box! Polly pushed hopefully at the UP and DOWN buttons but to no avail. Matty and Sam looked down from on high and asked if we were stuck. We assured them it was only for a minute and their angelic little faces turned from mild anxiety to one of sensing an opportunity of freedom, so they headed for the cakes to bat their eyelashes at whoever had the misfortune to be in charge.

Meanwhile the inestimable Georgie Talbot and her husband John, joint artistic directors of the arts centre, leapt into action. John opened a panel high above us and he and colleagues turned some ratchety thing that very slowly lowered us back down to the ground floor.

Various people fiddled with the lift mechanism, trying to reset the wretched thing, but to no avail. Much to Georgie's consternation nothing worked and defeat was admitted. Her fury was heightened by the fact that the centre spends a fortune maintaining the thing and that it had been inspected only days previously. The show, however, had to go on. Fortunately, at that moment, my friend Bob arrived, and within seconds had come up with an action plan. He and I would retire to a local tavern for the duration.

By now the audience was arriving so Bob and I hung around to chat with those we knew, many of whom nodded sagely at the lift and regaled me with stories of the times it had broken down with them in it. Bob, who hates lifts and only ever goes in one with me when we go to the cinema because I can't reach buttons (and even then sort of clings spread to the wall with apparent nonchalance in case the floor drops away) swore he'd never set foot in the thing.

It was also a chance to catch up briefly with Susie, who among her many responsibilities at LAC was tonight manning the box office. Susie, a talented writer, who co-ordinates the centre's children's and youth Theatre Clubs, endures the agonizing condition Lupus, and we have worked together occasionally over the last decade or so, with Susie in particular refusing to compromise because of disability. She had written and was performing two monologues and so, eventually, left Bob and me in charge of the box office while she went to prepare. I later learned that Matty thought her 'growing up' monologue was wonderful.

Once Bob and I had escaped box office duty we made off around the corner for a drink and chat. It occurred to me Polly might want to escape during the interval and get the boys home and to bed so we didn't stay long. As it turned out her second piece was still to come so Bob nipped upstairs to video her performance for me.

Not exactly the evening I was anticipating, but not bad.

Until next time...

A Matter Of Faith

2009-10-22T08:02:00.000-07:00

As a consequence of going Israeli dancing last weekend Polly and I found ourselves addressing the congregation of Holy Trinity, Wallington, this Sunday. We had been chatting to Stephen, the vicar, between expositions on dance in Leviticus, and had inadvertently reminded him of our existence. He asked us if we would be prepared to be interviewed during the service about our faith. Polly said yes, totally ignoring the little strangling noises issuing from me and the frantic shaking of my head that was going on behind the vicar's back. With malicious glee she committed us. Only later did she realise that she too would have to speak.

Sunday arrived and we arrived at the church as a family only a few minutes late. Before I had even had time to warm myself next to one of the iron radiators we were being invited to the front to address the congregation.

I have been in this situation many times in the past but not for a few years. A hundred or more faces watched me expectantly. I flicked the controller on my wheelchair and levitated into the air. That was better, I could now see and be seen. It also killed a few seconds. Polly took the microphone and spoke with her usual wit and assurance about her faith and how it enabled her to cope with some of the extremely harrowing situations she faces with her work as a clown doctor. All well and good but it was upping the bar and I was acutely aware that anything I said was going to sound trite or glib or worse, hypocritical.

All to soon Polly finished her bit and Stephen turned his vicarly attention to me. After giving the congregation a brief run down on my writing and theatre background and doing a great job plugging this blog he asked me what my faith meant to me. Good question. It was one of those situations when you open your mouth to talk and haven't got a clue what's going to come out.

If you've been reading this blog for any length of time you will be aware that if Jesus wants me for a sunbeam then he has grossly misjudged the weather. I admitted that I had 'issues' with God, which seemed to strike a chord with a significant number of those listening judging from the wry chuckle that followed. I went on to talk a little about the many good things in my life and left it to them to decide whether I attributed those to my faith or not. I did say that my faith has formed the backdrop to my life for the last 35 years or so, which however I feel about that sometimes, is absolutely true.

As ever when I raise matters of faith on this blog I am acutely aware that I am disappointing or disillusioning many of my readers, especially my many Christian friends who would, no doubt, prefer something more unequivocal from me. Equally I know for a fact that a huge number of my readers are atheist and hold no truck whatsoever with anything pertaining to faith. They say you can't please all of the people all of the time, but it would be nice to please a few people some of the time. So, for the tiny number of readers who lack certainty in matters of personal faith, this post is for you. As you dangle over the precipice of uncertainty you can at least be comforted by the knowledge that somewhere nearby I am hanging on grimly with you. Not a great deal of comfort, I realise, but at least we're not alone.

Until next time.

Dancing And Dimensions

2009-10-14T04:48:00.000-07:00

On Sunday it was Polly's birthday. For some reason she decided to spend it at an Israeli dance afternoon, held in the church hall. As it turned out, the session was led by a group of messianic Jews called the New Jerusalem Dancers, and although there were quite a lot of dances there was also an awful lot of exposition of “the bible says this and so it must be true” kind. Leviticus seemed to feature prominently. The dances were fun and there were lots of opportunities for audience participation and even a buffet of typical Israeli food. I do feel I now know everything I will ever need to know about the festival of Simchat Torah though.

At one point a demonstration of the blowing of a Shofar (a rams horn) brought about my favourite comment of the afternoon. “Bring me the anti-bacterial wipes!“ Such is a time of the times.

Oh, and in case you are wondering, the boys and I gave Polly perfume (Flower by Kenzo), some books, including a replacement copy of Delia's Complete Cooking Course, a pair of boots (not wellies), and a set of allen keys.

This morning we had a visit from a number of people from the housing department who came to look at our flat with a view to extending it. It took them less than thirty seconds to conclude that unless we open a portal to another dimension our home is as big as it will ever be. They've all gone away now to see if they can think of anything else.

Interestingly, on the corner of our street a new housing development is to be built. To mollify the local planning department the developers promised to build a disabled accessible house on the site. Perfect! But then, you will be astonished to hear, they had to make some changes to the plans and the house morphed into a small flat once the contract was signed and sealed. Almost like magic.

And finally, Matty was regaling Polly at breakfast with details of a dream he had had about slipping into another dimension and having to live dressed as a teddy bear. Sam, not to be out done, announced that he too had dreamed. He had been stung by a bumble bee and slipped into another Dalmatian.

Until next time. . .

Polly Ate The Table Leg

2009-10-09T07:26:00.000-07:00

As this blog cruises past entry number 200 (at How To Be An Inspiration anyway) I have news. My new rinky-dink, super-duper wheelchair is back and working. What's more, they have removed the inhibitor that stopped me going fast when the chair is tilted back. This means I can whiz a long at speed and in comfort, which is exactly what I did last night when I careened down to the village to buy some chips for supper. There was a small sensation in the chip shop when I raised the chair up and up to the high counter and handed over the money.

Having my chair back is a relief in many ways. Almost instantly several areas of pain that I'm so used to are gone with such suddenness I am caught by surprise. Simply being able to adjust my position in a near infinite number of ways keeps me both comfortable and entertained.

Of course, life being life, and my life in particular, not everything goes completely smoothly. For example, Polly ate the table leg. (I'm so tempted to leave that sentence hanging.)

The new wheelchair, what with all its multi-function bits and bobs, is a little higher than the old one. This is not a problem, except that it wouldn't fit under our dining table. This meant that the already difficult task of having a meal was further complicated by me not being able to get close enough to the table to eat. The solution? Raise the table. You can buy 'table-risers' from various disability inclined outlets but we were uncertain exactly how high the table needed to go so decided to experiment using household objects. Eventually we discovered the ideal height the table needed to go up was that of a 220g tin of Heinz baked beans. Fortunately we had a 4 pack of these little tins and the table problem was sorted.

Until, that is, the wheelchair was taken away for repair and we had to lower the table once more because now it was too high.

The new wheelchair, now repaired and restored to us, means we needed to re-raise the table. “Fetch the baked beans,” I cried. 3 tins of beans were produced. “Er. . . Where's tin number four?" Polly looked me straight in the eye, daring me to complain. “I ate them for my supper last night when I got in from work. I hadn't eaten since 7:30 that morning and it was gone 9: 00 at night and I was too tired to knock up a non-baked bean orientated meal. Any problem with that?” None whatsoever. You soon learn not to argue with a tired, hungry clown. The table, even on 3 legs, is more stable.

Until next time.

Still No Wheelchair

2009-10-03T08:08:00.000-07:00

Okay, where were we? My super-duper new wheelchair is still AWOL. Obviously it was never going to be simple to fix what with it literally having more computing power than the Apollo 11 moon landing mission. Apparently the controller has a fault. I'm told it should be sorted sometime next week. If I had any breath I'd hold it.

Talking of breath – neat segue, hey? - I'm making progress with the lung infection again. I was doing very well but on Thursday took a few steps backward when my temperature went up again. Dr Toosy has switched me to Ciprofloxacin and given me some Budesonide nebulisers. The main problem is that the whole process is so exhausting. It's not been helped by having my comfy wheelchair whipped away. My posture is not so good in the old one and the base of my right lung gets compressed. On Friday the community physiotherapist came to beat me and shake me. If she wasn't so nice I could really go off her.

That's all for now. Until next time.

Wheelchair Woe

2009-09-30T05:58:00.000-07:00

A man came to collect my ten day-old, whiz-bang, high-tech, rinky-dink, brand new, multi-thousand pound wheelchair yesterday. Apparently it's broken. It may be a programming problem or it might be a stuck micro-switch. Either way I'm not sat in it now, which is a pity because I really like it. Hopefully it will be returned to me tomorrow in fully functioning order.

I'll let you know what happens.

The Blue Box

2009-09-28T09:06:00.000-07:00

I am feeling so much better that I am beginning to wonder what all all the fuss was about. My temperature is down to normal and the infection seems to have gone. There is some residual gunk and coughing but it is as nothing compared to last week. It will take another week or so before I'm back to what passes as normal for me but I can live with that.

I would certainly have ended up on a respiratory ward at St Helier or the Brompton Hospital had it not been for one particular piece of kit. At times of crisis our home can resemble a reasonably equipped emergency facility what a BiPap ventilator, a nebuliser, ceiling hoists, profiling bed, air mattress, Oxygen, a drugs cabinet with a significant street value, and a blue box the size of a large bread-bin, known in our home as 'the cough machine', but more technically, by my consultant at least, as a Cough Assist Mechanical Insufflator-Exsufflator.

The Cough Assist Mechanical Insufflator-Exsufflator is a genuinely life saving bit of tech. Without it I would either be dead or on permanent ventilation. The machine works by clearing secretions by gradually applying a positive pressure to the airways and then rapidly switching to negative pressure. Apparently the rapid shift in pressure produces a high expiratory flow, simulating a natural cough. The reality is more akin to having someone Dyson your lungs on full power. The effect is unsettling and uncomfortable but infinitely preferable to hours of ineffectual hacking coughs that simply exhaust you, or, sessions of chest pounding physiotherapy that induce near psychopathic hatred of the person pummelling you.

Way back in 2000 I was very ill with Pneumonia resulting as a complication from Pancreatitis. I was in intensive care and high dependency wards for months and for most of the time had a tracheotomy. A tracheotomy, for those unfamiliar with the procedure, is where someone, preferably a doctor, makes a hole in your neck and feeds a tube into your lungs for air to be drawn through, or, as in my case, for someone to stick a suction tube in and vacuum your lungs for gunk. Having a nervous F2 wielding a scalpel at your throat while you are passing out from lack of Oxygen rates pretty low on my list of things to do again. The advantage of the cough machine is that it is totally non-invasive. It removes secretions without the need for someone sticking a plastic straw through an unnatural orifice in your neck. I'm not sure how much such machines cost but they must be cheaper than spending days, weeks or months in hospital.

Even today, when I am feeling so much better, I have already used the blue machine twice. Once again I am grateful to be living in a country with a national health service that provides such equipment free at the point of need.

In the light of all above, it might seem churlish to moan about another freely provided piece of absolutely necessary kit, but this morning, just at a critical juncture in the preparation for a shower, my new multi-thousand pound, state-of-the-art, rinky-dink wheelchair stopped working. The control panel LCD screen simply states there is a system error and the thing refuses to budge. Fortunately, the ever unreliable Serco, have failed to collect my old wheelchair and so I am back in that until an engineer with a degree in computer science can get here tomorrow. I have had the new chair ten days, most of those I've been too ill to do anything other than sit, so I doubt the problem is overuse. Mind you, I wouldn't put it past Matty to have reprogrammed it to play Marvel Ultimate Alliance 2.

Until next time.

Of Ben Hur and Polly

2009-09-25T09:49:00.000-07:00

Now, where were we? Oh yes, struggling manfully against terrible illness. Right, done that. I'm utterly wiped out but well on the mend. The nasty green gunk has faded to white and there is less of it. The steroids seem to have kept the worst of the irritation caused by continuous coughing at bay and my temperature is back to normal. I know from experience that it will probably take at least another week to regain lost stamina, but, unless the children come home from school with Swine flu or typhus this week I'm probably in the clear, for now.

Thank you for all the 'best wishes' and 'get well soon's. As well as the occasional 'What? Your doctor follows you on Twitter? Cool.'

As previously mentioned, on Sunday I literally dragged myself from my sick bed to go and see Ben Hur Live! at the O2 arena in Greenwich. To be honest, had it been virtually anything else I would have forgone the experience, but how often do you get to see a Roman based theatrical extravaganza? It even promised a real chariot race. You'd have to be sick indeed to miss that.

I haven't been to the O2 since it was the much maligned Millennium Dome. It has changed a lot but the disabled parking is still rubbish. According to my wheelchair, the £10 reserved disabled parking slot we had pre-booked was 1km from the actual arena. Needless too say, we missed the very start of the show where Judah Ben Hur is born in Jerusalem on the same night as another baby is born in Bethlehem. We joined the story when Judah is reunited with his Roman childhood friend, Massala.

The stage show pretty much follows the plot of the Charlton Heston film and includes a spectacular sea battle against pirates, a Bacchanalian party, gladiatorial fights and, of course, the famous chariot race. And yes, four teams of four horses pulling chariots raced around the arena in a (carefully choreographed) thrilling race, complete with wheel falling off accident. I loved every minute and would heartily recommend it to you when the show returns in early January next year.

I paid the price for my Roman adventure in terms of exhaustion but it was worth it. Polly bought the tickets for our 16th wedding anniversary and has spent the week explaining to anyone who would listen that I am a grown up and she can't actually forbid me from risking my health in pursuit of entertainment. By the way, our actual anniversary is today. No, I didn't forget. I have bought Polly a rather stylish lamp for the living room.

So finally, happy anniversary, darling. I don't know why you love me, but I give thanks everyday that you do. All my love, always.

Until next time. Bye.

Poorly Puppy

2009-09-22T08:58:00.000-07:00

As you can tell from the fact that I'm updating this blog, I'm still alive. I'm being very sensible, eating a little, drinking fluids, taking my medicine, having nebulisers and not attending arena based spectacles in the south-east of London. No sir, I'm a good boy.

I am, however, sick of being sick. I can't even lie back in my new whiz-bang wheelchair without drowning in self-produced fluids. Worse still, in many ways, I know I should be grateful that this is still a relatively minor illness by my standard, and I should be happy that I've not been carted off to hospital to be ventilated through a tracheotomy. Still, it's only September, and a long winter looms. Oh enough, Stephen.

Disconcertingly, my GP reads this blog, so, given my stupidity on Sunday, it was with some trepidation that I had Polly ring him to confess that the nasty green stuff in my lungs was, indeed, still nasty and still green, despite 5 days on Co-amoviclav and a course of Prednisolone. So, now, Dr T, having noted that according to Twitter, I was feeling a bit better, has forgone a switch to Ciprofloxacin but has upped the dose of Prednisolone. (He did phone to check I was actually improving – he doesn't just diagnose and prescribe based on Twitter tweets, he's a professional after all.) He's also ordered a sputum test. (I tell you all this because I know Jacq, Ronnie, and any other GPs reading this are itching to know.)

Polly went to the Chemist in the village to collect the prescription. It was not, she told me, our regular pharmacist, but another pretty young woman, who, having done the necessary identity checks, remarked, as she handed over the bag of drugs, that she had looked at my file on the pharmacy computer.

“Poor Mr Deal, ah, bless him,“ she said chirpily. “He has been a poorly puppy.” Sweet.

Polly says that in 16 years of marriage she's never thought of me as a puppy. Many other creatures however. . .

Until next time. Bye.

How To Be Sick And Stupid

2009-09-21T04:59:00.000-07:00

Thursday evening: start to feel a bit rough.

Thursday night: Very hot, coughing.

Friday morning: ill. Nasty green stuff evident in lung. Phone the good doctor Toosy, who must have groaned inwardly. He decides not to mess around and prescribes anti-nasty green stuff-biotics and steroids. Take Paracetamol. Use Salbutamol nebulisers. Very anxious about something.

Late Friday morning: new wheelchair arrives with accompanying engineer and physiotherapist. . Too exhausted to be excited. Will write about chair soon.

Friday afternoon and evening: miserable.

Friday night: coughing, hot, sweaty, anxious.

Saturday: sleep until 3pm. Spend rest of day bravely rallying. Eat a little risotto. Go to bed. Have taken decision. Sleep.

Sunday morning: if you are a doctor, especially my doctor, stop reading now. Went to O2 arena in Greenwich to see Ben Hur – Live. It's our anniversary this week and Polly had booked it a while ago. I sooooo wanted to see it. Fabulously spectacular, will write about it soon. Drove home over every bloody speed bump in South London.

Sunday evening: pay for earlier stupidity. The whole going to bed thing a ghastly, messy, embarrassing disaster. Apologise to carers.

Monday morning: exhausting get up. Still getting used to new wheelchair. Drugs, nebulisers and cough-assist machine. Decide to update blog.

More soon, assuming I live. Bye.

Managing The Bathroom

2009-09-15T08:03:00.000-07:00

I'm not sure how this story will translate for international readers but it made me laugh.

Polly and I have undertaken to project manage the renovation of my sister and brother-in-law's house in Surrey. Helena and Andrew have been living and working abroad for the last few years and the house has been on the rental market. It needs a lot of work doing to it and so various quotes are being acquired. Fortunately Helena was in the country last weekend and was able to go through the various aspects of the job with us in person. She decided, rather than repair the bathrooms, she would have new ones fitted, so asked us to find out how much this would cost. I asked her if she wanted us to refit the downstairs cloakroom while we were doing the bathrooms because a third lavatory wouldn't cost much more than two.
“You might might be able to get a three for two deal or something like that,“ I observed.

“Surely, if you get buy one lavatory and get one free,” quipped Polly, “that special offer would be a BOGOF!“

As I said, it made me laugh.

Faster Than A Speeding Snail

2009-09-11T11:55:00.000-07:00

Yesterday I had a fitting for my new wheelchair. Yes, it's the kind of wheelchair that needs fitting. Mind you, it also the kind of wheelchair that requires an engineer and a physiotherapist to explain how it works. It has so many configurations I began to think piloting a Harrier Jump-Jet would be simpler. The controller has more modes and computing power than Deep Thought.

The chair is amazing. Thanks to a grant from the Joseph Patrick Trust I have been able to have a seat-riser fitted which allows me to rise up to my standing height. The seat tilts as my current seat does, but in addition the back-rest moves independently. Each of the foot-plates can be adjusted at the press of a button. As I played with the controller I found that I could configure the seat so that for the first time in years I actually felt comfortable. The expression of relief on my face made Polly feel quite emotional. Little details like calf supports and silicon gel covered armrests add to the degree of comfort. Even the head-rest is infinitely adjustable.

Of course, this being me, not everything was perfect. The chair is significantly higher than the present one which means we need to raise our dining table using blocks. And because the motorized foot-plates are more complicated to take off the carers are going to find transfers more difficult. The chair is a little longer as well which means taking certain corners around the flat will be more challenging. I'm sure these things will lead to a deal of frustration and no doubt those frustrations will be reported on these pages but at the moment I am almost beside myself with excitement.

The wheelchair has gone away for fine tuning and adjustments, not least to reprogram the controller so that the chair goes at more than the 0.5 miles an hour it would only go yesterday. This was particularly embarrassing when I wanted to nip out to the car and check that the chair would fit in it. It took nearly 15 minutes to get round the corner while the engineer frantically phoned the office for instructions on how to access the power menu. I am assured it was only a programming glitch and can be easily fixed. I hope so or all I will be taking delivery of next week will be a very comfy armchair, albeit one that moves faster than a speeding snail.

I will keep you informed.

The Sony Reader

2009-09-07T11:14:00.000-07:00

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. .

Unbalanced

2009-09-01T05:13:00.000-07:00

Okay, where were we? Back from holiday, that's right. Back from holiday and straight in to a carer crisis. One of my long term carers suddenly started arriving late or not arriving at all. There were, of course, all sorts of reasons, some understandable and some not so. The result, anyway, was that I spent several days stuck in bed for an extra hour or so, or hanging around in the evening, ever shorter of breath, waiting for replacement carers to arrive. The situation has settled down somewhat but I'm still not sure who is going to turn up morning and night.

Further complicating the situation has been my BiPap mask problem. As mentioned last time, I appear to be leaking in deep sleep. The air pushed in to my lungs by the BiPap machine is under pressure and the mask I use is a nasal one. In other words, a mask fits to my nostrils and blasts air up them and in to the lungs, fully inflating them, and thus facilitating O2 and CO2 exchange. The system only works effectively because of the pressure. However, when I am in deep sleep, the muscles in my face relax and the pressurised air short cuts the lungs and escapes via my mouth. The BiPap machine has interpreted this as a leak in the system, it's little computerized brain assuming someone has stuck a pin in the tube or unplugged something in an attempt to assassinate me in my sleep. Although I don't actually die (you'll notice), the effect is, over the long term, a build up of CO2 and resulting headaches and mental sluggishness.

To solve this problem I have been sent, from the Royal Brompton Hospital, various alternative face masks. The first one covered both my nose and mouth, which obviously solved the mouth leaking problem, but was terribly hot and uncomfortable and turned any saliva in to dry, crispy flakes. It also leaked tiny amounts of air around the sides causing occasional high-pitched squeaking sounds. Horrible. The next mask was a full-faced one, covering eyes, nose and mouth. It looked suitable for deep-sea diving. I am not a naturally panicky person but the moment I put this mask on I felt unbearably claustrophobic. My eyes watered and my nose itched and I couldn't touch them because of this plastic casing. I managed nearly two minutes before freaking out and trying, unsuccessfully, to rip the thing from my face. Fortunately Polly came to my semi-hysterical rescue while the carers flapped ineffectually.

So, at the moment, I'm using my old mask with an alternative, non-alarming BiPap machine. Unfortunately this machine is less affective (due to its limited pressure settings) and although I am not being woken by an alarm I am, presumably, still leaking air in deep sleep. This is a situation that can't go on too long. If I start writing complete gibberish (as opposed to the normal nonsense), you can assume my gas levels are unbalanced and I'm being poisoned.

Until next time. . .

Wales 09 or Don't Hold Your Breath

2009-08-24T12:04:00.000-07:00

When going on holiday what is the last thing you want to forget? Sun cream? Swimming costume? Wheelchair battery charger? Ah yes, another Deal holiday gets under way with its customary smoothness.

Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.

The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.

A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace both Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)

Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.

We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.

As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.

I sense that a trip to the Royal Brompton Hospital is on the cards.

Of Wales And Wonders

2009-08-07T05:24:00.000-07:00

Well, we've had the new car for a week now and it remains unscratched and undented. Polly has discovered Sport on the gear stick and now uses it whenever there is a bend in the road or a hill, or indeed, a tree by the side of the road. She is still getting use to the football pitch length of the vehicle and we have had to massively cut back a bush to get it into our parking space.

We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.

Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.

Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.

The New Car Cometh

2009-08-01T08:54:00.000-07:00

Well the new car has arrived, diamond black and the length of a cruise ship. We were expecting it to arrive sometime on Thursday afternoon but the driver delivering it had set off from the Wirral at 4.00am and arrived at about a quarter to breakfast. This meant we were able to take the gleaming new vehicle out for a spin for lunch.

The Caddy has an automatic transmission but Polly has only ever driven a manual so our first drive was accompanied by little shrieks of panic as she tried to stamp on the missing clutch and pointlessly reach for the gear-stick. Within minutes though she was driving like a pro and we all began to relax. We picked up Pam, Polly's mum, and headed down the A3 to Painshill where we sat outside in the sunshine and had some lunch and Polly stopped shaking.

The Caddy is much longer than the old Kangoo so I feel as if I am sitting a long way back from the driver. Polly suggests that we put up a grill behind the rear passenger seats and I can bark and drool from my position in the back. The only thing I find truly annoying about our glorious new Deal-Mobile is that there is no way to play an Ipod or MP3 player through the car stereo which for a car design so new seems ridiculous to me. A trip to Halfords appears inevitable. On one of the many plus sides, having side doors to allow the children in and out without them clambering all over the fronts seats is such an improvement on the old van that I find myself wondering why we didn't take an acetylene torch and cut our own. We also have air-conditioning so in the height of summer it is marginally warmer in our car than outside.

My friend PJ has been reading me reviews of the Volkswagon Caddy Maxi which agree the vehicle is good value for money but point out that because it is a van conversion, we passengers are essentially the human equivalent of plumbing equipment or frozen pizza. Well, if nothing else, we are comfortable, air-conditioned, cargo. Other reviewers besmirch Caddy owners as being people whose fecundity outstrips their budget. Uncomfortably close to the truth in our case.

When I was a child it was my ultimate vehicular ambition to have a car with electric windows. At the time the only cars that had such sophistication were luxury cars like Rolls-Royce's and Bentley's. Now I can bellow down the length of the vehicle and Polly can push a button and miraculously windows slide effortlessly down. I feel like a shouty millionaire.

We can not thank my family enough for their immense generosity in enabling us to possess our diamond black, wheelchair accessible vehicle. I always knew letting my little brother beat me at Subuteo when I was 8 would pay off in the end. Thank you.

Bits And Pieces

2009-07-28T06:58:00.000-07:00

This, as the title suggests, is post of little bits of news, updates and observations. As I write I find myself in a slightly peculiar situation. Polly has gone to Buckingham Palace with her mother for the day and I am left here with the children. The Buckingham Palace visit was arranged as a birthday present for Pam and involves a tour of the state rooms and various exhibitions, but not, as both Pam and Polly secretly wish for, a chance to poke around Her Majesty's and Prince Phillip's private quarters. I am, however, not left alone with boys. Polly decided to make use of some of the help offered to us by various agencies at a meeting held a while back. As a result I am writing this with a woman sat silently in the corner of my living room. She is poised to do my bidding but I don't have anything to bid her to do. The boys are behaving in an exemplary manner, happily engaged in various games and I am finding it vaguely disconcerting having a stranger sat watching our every move. I'm sure she is very nice. I just don't know what to do with her. I'm busy writing this so I can pretend to be busy and not have to talk to her.

We have had the boys for nine and five years respectively and have managed not to break them. Then, in the course of one week, we discover that Sam has had urinary reflux and could, theoretically, have damaged his kidneys and that Matty needs glasses. Sam has always been prone to urinary tract infections but it is only after this weeks ultra-sound scan that we discovered how potentially serious it could be. Fortunately the kidneys don't appear to have suffered any damage, being of normal size and shape, but further tests may be needed to check for scarring. We have noticed Matty squinting a little recently and so Polly took him to the optician. He returned home sporting a rather smart pair of glasses which he now will be wearing most of time. Matty is not particularly upset by this because glasses are quite trendy at the moment at school and he reckons he suits the geek-chic look.

Meanwhile, we are breathless with excitement as the new car is due to arrive on Thursday. I can hardly wait. Polly, however, has had her patience tested to the limit getting the new car insured. Despite every other TV ad being for car insurance, getting an adapted vehicle insured can be tricky. You need to approach a specialist broker, of which there are a few but nowhere near the number available to non-adapted vehicle owners. We have had the old Renault Kangoo van insured at a reasonable rate with a company and were happy to transfer the cover to the new Volkswagon Caddy. Only the Volkswagon Caddy is not a van but a car. You might suppose we intend to drive our new car to Basra via Helmand province carrying crystal chandeliers and open bottles of Nitroglycerin by the amount of time it took Polly to complete the transaction. She was on the phone for over an hour and a half. Normally we like to insure our vehicles for anyone over 25 to drive. Now you have to be over 30 and have the proven ability to yodel whilst reversing.

Right, I'm off to see if my lurking stranger can teach the kids country dancing or something.

Until next time.

You Swine

2009-07-24T06:48:00.000-07:00

The school holidays are under way. Traditionally in our household one or other or both of our children instantly become sick a few seconds after the final bell rings and spend the first week of the holidays dosed up on Calpol and Ibuprofen. It is as if their little bodies struggle through the final weeks of sports days, class assemblies and dressing up days - this year a circus theme. Matty and Sam went as strong-man and elephant trainer respectively – and then, when the excitement is over, they wilt and cough and sneeze and descend into puddles of sweat and puking misery. This year however both boys seem fit and healthy, if a little tired and scratchy.

Obviously this is good news, doubly so because of the lurking threat of Swine flu. It is a relief to know that H1N1 (the post code for Walls, incidentally) is typically a mild variant of the influenza virus, and only a danger to those with underlying health issues. Of course, being someone with the odd underlying health issue I have to refrain from poking the television with a stick every time some smug government spokesperson assures the country that Britain leads the world in pandemic readiness. I'm glad we do lead the world but when we are told “So-and-so died of complications arising from Swine flu BUT they had underlying health issues,” I am not, unlike the vast majority, greatly reassured.

I refuse to cower in self-imposed isolation but I would appreciate it if you are feeling under the weather that you stay (say 15 metres) away from me. At least until the much vaunted Swine flu vaccine is available. Meanwhile, I'll be clutching my batch of Tamiflu close to my chest

Party Animal

2009-07-19T07:04:00.000-07:00

I am so OLD. Well obviously I am, I had my birthday last week. Thank you for all the best wishes received and for the occasional expression of surprise that I've made it this far. My family combined, in case you are wondering, to give me an Ipod Touch, 32 gigabytes of pure gadgety loveliness. But it is not my physical age that concerns me, but rather my level of mental decrepitude.

Last night we went to a party. A school friend of Polly, “I haven't got a thing to wear”, was celebrating her 40th birthday, and had hired the events room at a rugby club in deepest Surrey. We didn't set off until nearly 8 o'clock, and Sam kept whispering to me, conspiratorially, that it was past his bedtime and that he hoped mummy wouldn't notice. Both boys were thrilled to find, upon our arrival, that there was an abundance of children to play with, and all thoughts of bedtime vanished like the drinks at the free bar.

What struck me first was the sheer volume of the music. The function room was dotted with large round tables, down one wall was a finger buffet and in a corner was the bar. In the opposite corner, before which was an area cleared for dancing, was a DJ with an array of decks, speakers and flashing lights. The only thing missing was a volume control.

This is where I come across as all fuddy-duddy. The room was full of people sat, or standing, in groups, huddled together, shouting into each others ears. Any conversation conducted more than six inches from ear to mouth involved advanced mime and sign language gesticulation. After a few minutes bellowing at Elaine, our hostess, and with Polly, I found myself sitting, nursing half a pint of cider, in a kind of audio-isolation.

I amused myself by watching the series of photographs being presented one after another on a TV monitor affixed to one wall. Countless pictures of Elaine's childhood and family cycled by, intermittently punctuated by photographs of her with friends. Every now and then a shriek went up as someone recognized themselves (during a brief hiatus in the cacophonous music, obviously). I spotted Polly a few times, a distinctly unpromising pre-pubescent teen in horizontal stripes, and wondered at the processes that had transformed her into the vibrant, beautiful woman, dancing with our boys to Wham and a medley of Abba songs.

Judging by the pictures, one of the defining elements of growing up in the eighties was hair. Big hair. The array of perms, bouffant and otherwise, was dazzling. There was a particularly unflattering photo of Polly with an angled fringe. She punched me on the arm when I asked if it was from her Hitler period.

At one stage in the evening, when Polly had taken the boys to the loo, someone came to talk to me. I think his name was Colin but he was competing with 'Billie-Jean' at the time. (Apparently the kid is not his son.) I think Colin was asking me how I knew Elaine but he might equally have been asking for my opinion of global warming.

I realised, as a bleary-eyed Sam came and curled up on my lap, that I am not naturally a party animal. My cider had lasted all night and as much as I enjoy 80's popular music my ears were starting to bleed. Let's face it, I realised as I stroked my son's hair, I'm a grumpy old git.

Not Just A Mattress

2009-07-11T07:25:00.000-07:00

For anyone who has been following the saga of the mattress, you will be thrilled to know that we have made significant progress. Well you may not be thrilled but I am. A few days a go a new mattress arrived that whilst similar to the previous one is subtly different. Instead of tubular cells filled with air this one has square cells. I am no longer slowly rotated at night but instead I lie supported and immeasurably more comfortable. Of course the new mattress is not really a mattress but is, in fact, an Advanced Dynamic Floatation System so obviously it is going to be more comfortable than any boring old mattress.

The last few nights have passed with a delightful lack of wakefulness and both Polly and I feel much better for it. I was even able to face Sam's sports day and see his team aquit themselves well in the beanbag-on-the-head and the potato-in-a-sieve relay races. I also went to see Matty perform all sorts of kicks and punches as he qualified for his orange belt in Karate. Matty is now able to protect himself against barefoot children in white pyjamas who shout “ Ai! “ whenever they move slowly in a threatening manner.

Bye until next time.

Perchance To Dream

2009-07-06T07:16:00.000-07:00

It is probable that during the course of this post I will fall asleep. The last few nights have been truly miserable and I ache and I am grumpy and I can hardly keep my eyes open.

It is all the fault of the bloody air-mattress. It seems like a simple proposition. You lie on a mattress inflated with air. The air is gently circulated around chambers in said mattress thus reducing the likelihood of pressure sores and, as an added bonus, allowing a small degree of movement to anyone with strictly limited movement. Someone, picking an example out of the air, like me.

I have been complaining about my mattress for quite a while. Until recently I was sleeping on one with the comfort rating of a kitchen work surface. It moulded to my body in the way that granite doesn't. Any circulation of air was only detectable with instruments purchased from the manufacturers of the CERN Hadron collider. The children refused to bounce on the bed because they said it caused compact fractures.

I currently have an air-filled overlay on a memory foam base. Now I can feel the air circulating all right, but the effect is to cause me to roll backwards in my sleep, turning me like a frankfurter on one of those warmers you see in cinema vending areas. I then get stuck in unbearably contorted positions that require Polly to engage in bleary-eyed remedial disentangling procedures. Last night there were seven such instances and I feel like a piece of string at a cub scout knot tying practice session.

I have now tried all the alternatives available through the community occupational therapy service. I have identified the product I think I need. I have at least two senior consultants saying it is a medical necessity. Everyone seems to agree that it is worth trying but can I get hold of the bloody thing? Can I buffalo. Emails and phone calls vanish into the ether. The details wander lost through cyber-space and everyone seems to want one more level of clarification before they can act. It's only a mattress! I know it's quite an expensive one but surely we could hire one for a few weeks to see if it helps. It must be cheaper than paying for the hours of anger management therapy that I will require if I don't get a good nights sleep soon. And think of Polly. Every time I need moving I have to wake her up. We've barely had an uninterrupted nights sleep in months. For pities sake, if any of the many health care professionals reading this don't act soon there will be a tragic case of matresscide to explain to the public inquiry that will surely follow. Act now and save your careers and reputations.

Right, I'm off for a coffee. Triple espresso I think.

Don't Bat An Eye

2009-07-03T07:02:00.000-07:00

I am so sorry for the lack of posts recently. This is entirely down to the fiendishly tedious manner by which I am compelled to type these days. It is terribly frustrating, laborious and time consuming and deeply depressing. I know some profoundly disabled individuals manage to write entire novels by batting their eyelids one letter at a time but they must be blessed with powers of persistence and patience way beyond mine. Even though I am using sophisticated text prediction software just writing this paragraph has taken more than fifteen minutes. At some point in the near future I am going to have to invest a great deal of time and, no doubt, money in improving the situation.

The last week or so has seen the south-east of England in a heatwave, with temperatures regularly above 31C. Generally I enjoy hot weather but sitting on a metal ramp in a metal wheelchair has been a bit much even for me. It's been like carrying your own radiator around with you for a week.

Right, enough for now. I will be trying to write little but more often in future. Please bare with me. I will be exercising my left eyelid in preparation for future posts.

What A Shower

2009-06-21T10:46:00.000-07:00

Every so often someone comes up with an idea to improve my life – whether I like it or not.

In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.

Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.

On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.

In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.

It was only later that Polly pointed out that the shower-chair had extendible legs.

At least I'm clean.

Not Just A Chair

2009-06-15T12:15:00.000-07:00

Oh the dilemma.

If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.

The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.

However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.

To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.

So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .

They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.

I'll keep you informed.

Back To School

2009-06-11T08:04:00.000-07:00

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.

Mobility Roadshow

2009-06-05T12:55:00.000-07:00

The problem with not having blogged recently is that I have a backlog news and views to impart. For example, I have been beset by community physiotherapists, speech therapists and OTs who have all made eminently sensible suggestions and any one of them would have made for a good post. I also made the journey to King's Hospital to see Dr Rose and his team where I was assessed and plans were drawn up, strategies devised and letters arranged to be written. Dr Rose also, and most importantly, helped me to get a handle on what has been happening to me regarding my Muscular Dystrophy.

The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.

I need a new wheelchair. More about that soon.

Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.

It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.

In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.

In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.

We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.

More soon.

Still Blogging On

2009-06-02T09:32:00.000-07:00

I'm sorry that I appeared to have disappeared from the blogosphere recently, I'm all right, honestly. A combination of annoying difficulties to do with actually typing words, sheer business and a run of good weather have conspired against my blogging duties. Thank you to those who enquired as to my virtual whereabouts During my hiatus various things have been happening.

Polly and I made the trek in to London for one of my regular appointments at the Royal Brompton Hospital. While I waited among the wheelchairs and breathing apparatus Polly went on to her Clown Doctor office in Islington to sort out her expenses form. I read my book and waited, nodding occasionally to nurses, doctors, phlebotomists and sundry support staff I have come to know over the years, and watching the assembled disabled folk wheezing and waiting. Steve, a technician, took blood from my earlobe and tested my blood gasses and eventually I was ushered in to the consultant's consulting room. Dr Simmonds checked me over and pronounced that my carbon dioxide levels are elevated and that they could, in theory, be exacerbating the somewhat unnervingly rapid deterioration in my muscular dystrophy. More time on the BiPap will be required and the various settings will need to be adjusted to compensate. On the plus side, it might help.

By way light relief, and it being half-term, we took the boys to the cinema to see A Night In The Museum 2. It being half-term and raining the cinema was packed full of screaming, overly excited children, all munching vast buckets of popcorn and other noisy comestibles. We had to wait until a later screening than we had intended and had to queue for what seemed like hours by a poster advertising a film called Drag Me To Hell. Enough said.

I've more to tell you but my patience with tapping out one letter at a time has worn thin.

Oh, by the way, we're off to the Mobility Roadshow near Cirencester on Thursday, so if you are intending to go, drop me a line or leave a comment and maybe we can rest our weary wheels and grab a coffee together.

Bye for now. I'll be back soon.

Speak Easy

2009-05-20T11:45:00.000-07:00

I have a new on-screen keyboard I am trying out, it has lots of fancy predictive text facilities that should, in theory, speed up my typing. I can but give it a go.

Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.

The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.

Until next time... Breathe in, breathe out.

Bionics And Gaffer Tape

2009-05-19T06:11:00.000-07:00

"Steve Deal, writer. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Steve Deal will be that man. Better than he was before. Better, stronger, faster... so long as Polly has enough gaffer tape."

Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.

The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.

So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.

The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.

In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.

And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.

Quiz Night

2009-05-12T06:37:00.000-07:00

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.)

G'day

2009-05-07T05:55:00.000-07:00

My apologies for the lack of posts this week. Frankly, tapping these missives out letter by letter puts me off writing unless there is something I particularly want to tell you about. This has been a slow week.

Yesterday I was visited by Gina, a community physiotherapist. Usually I have little truck for physiotherapists, who in my experience want to inflict pointless and painful exercises upon me, or wish to pummel me on the chest, ostensibly to clear mucous from the lungs, but in reality to satisfy their own sadistic tendencies, hammering away whilst saying, “there, does that feel better?” Physiotherapy is, generally speaking, a discipline that wishes to inflict pain and suffering with the intention of easing it. So it was with resignation rather than with anticipation that I greeted Gina.

Gina turned out to be quite nice. I think I should make it clear that this sentiment was in no way influenced by the fact that she was a young, blonde, bronzed, pony-tailed Antipodean who by all rights should have been dressed in a swimsuit, running along Bondi beach with a surf board tucked under one arm and with a can of shark repellent held at the ready, preparing to plunge into the foaming sea. No, that thought never entered my mind. Obviously. Not for a second. No.

Gina prodded and pulled me in the manner typical of her profession. She examined ceiling hoists, profiling beds and shower chairs, pronouncing herself unsatisfied at my lack of support, both from certain other services and, less figuratively, from my wheelchair seating position. Polly watched with an amused expression as I tolerated being poked and stretched with uncharacteristic good humour, arching her eyebrow as I said “No, that hardly hurts at all,” as my feet were being twisted into an unnaturally natural position.

Later, with the theme tune to Neighbours unaccountably running through my head, I thought about writing a post for this blog, but then thought, no, I'm too exhausted by my exertions at the hands of a health professional to manage right now. They'll have to wait until tomorrow.

G'day.

It Should Have Been Me

2009-05-01T12:12:00.000-07:00

May 1st is Blogging Against Disablism Day, a highlight in the disability blogging calendar, if you can imagine such a thing. Here is my contribution.

There I was, flicking through the pages of Mobilise, a magazine promoting mobility for disabled people, something I'm sure we'd all agree is a good thing. (Promoting mobility I mean, not flicking through the pages of a magazine. We disabled folk are notoriously sedentary.) Anyway, there I was, gazing at adapted vehicles with sexy aluminium ramps and scooters with five wheels for extra stability, when there between an article about a kid taking his local bank to court over access issues and one about Naidex '09, a conference promising innovative features, new products and educational seminars (wow!), there was an article that might change my life and give me a bite at the reality TV cherry. BBC 3 are looking for wannabe wheelchair dancers. Sign me up.

“BBC 3 seeks wheelchair users”, the article read. “Would you like to try something new?“ it continued. “Fancy learning to dance?” Would I ever! “If so, BBC 3 would like to hear from you. We are searching for wheelchair users to get involved in an exciting new series.” This could be my breakthrough moment. Dancing on wheels. I had Polly phone the contact number straight away.

The conversation started well. I have a history in the the arts, I'm married to an actor for crying out loud. I am disabled and I use a wheelchair! I'm articulate. Okay, my speech is a little bit slurry but the subtitles would be a hoot. The nice young man at the television production company was starting to sound excited. He obviously was beginning to think he had found his Ray Quinn, or at least his John Sergeant. (Sorry if you are reading this outside of the UK, you'll have to take a guess at the cultural references.) Polly told him she assumed they were looking for couples and was preparing to assure him she could hoof with best of them when he told her they intended to partner the wheelchair dancers with able-bodied professionals. I felt disappointed for Polly but stoically imagined myself partnered with some nubile, Lycra-clad beauty, prepared to perch sensually and artistically on my foot-plates for the sake of entertainment. I heard Polly tell him she imagined I wouldn't mind too much but that she hoped my costumes would be particularly lurid and skin-tight so as not to be out shone. “He'd like lots of sequins and colourful feathers,” she assured him whilst smiling at me malevolently.

I was mentally preparing to sign on the dotted line and was jiggling my joystick to a Latin rhythm in anticipation of reality TV fame and hoping that readers of this blog would vote to keep me in week by week, when I was dealt a devastating blow. I heard Polly say, “an electric wheelchair, a Samba Quickie... Oh.” I could tell from her face that she was not hearing good news. “No, he can't use a manual chair any more.”

After she put the phone down she explained that, simply put, I am too disabled to appear on a disability based reality TV show. How unfair is that? I mean, my chair is named after a dance! But oh no, they want able-bodied disabled wheelchair users who can whirl and twirl on two wheels and who don't need recharging after every Foxtrot and Argentine Tango. The show will never amount to anything without me, mind you. My Bosa Nova on four wheels would have been a televisual water-cooler moment in history. It hurts me to know you'll never see it.

But then, to rub salt in the wound, Polly was told they are hoping that wheelchair users will come and be in the audience. I ask you! Who would want to see a bunch of cripples roll around a dance floor when one of them isn't me? I'm thinking of pitching my own idea for a reality TV programme, Wheelchair Death Race, where wheelchair users slalom down a steep hill knocking over celebrities en route. Now that's entertainment.

Why I Cried On Sunday

2009-04-27T07:09:00.000-07:00

You would think that being severely disabled would be enough, but, oh no, on top of FSH MD you can still get all the coughs, colds, infections and allergies that everybody else get to endure. Normally that's just life but occasionally circumstances combine to present you with a very particular situation as occurred on Sunday.

Friends Stewart and Catherine had asked Polly and me to be godparents to their youngest son, Elliot. Wonderful, we were thrilled to be asked and the service was held at our church, Holy Trinity in Wallington on Sunday.

Holy Trinity is one of those Victorian edifices that stands, complete with steeple, on the approach to Wallington and has served the local community for generations. In recent years the multi-purpose, all singing all dancing Trinity Centre has been artfully integrated into the fabric of the structure providing a hall and function rooms as well a kitchen to further serve the people of Wallington. On Sunday a couple of hundred people gathered for the morning service, supplemented by friends and family of Stewart and Cath because the Christening would form part of the service, and sang hymns and worship songs and generally behaved in a typically Anglicany manner.

Stewart and I had placed ramps in position to enable me to get up on to the raised dais. When the time came for the Christening I ascended the ramps and took up my godfatherly position with Polly and the others in the party. We promised to raise Elliot in the Christian faith and on cue he began to cry. Stephen, the vicar, took Elliot to the font and splashed him in an appropriately holy way. Elliot was so surprised he forgot to cry and spent the rest of the ceremony tracking rivulets of water as they dripped from his head.

The problem started for me when the Christening was over and I had to negotiate the ramp again. There is something in the air within the church that makes my eyes run. I don't know if it is the dust, the polish or pollen from the flower displays. It may well be a combination of all three; I don't know. What I do know is that by the end of the ceremony my eyes were streaming so much so that I could hardly see. The ramp was a complete watery blur as I gingerly crept towards it trying to align my wheels so as to slot into each of the 8 inch wide channels. 200 blurry faces watched patiently as I edged forward, tears streaming down my cheeks, hoping I had remembered exactly where each channel was placed. I was so busy trying to line up with the ramp that, when I was finally descending it, I barely remembered to brace myself in time to prevent myself from being pivoted forward and out of the wheelchair in an undignified heap onto the transept in front of the pews. By the time I was back in my place I could barely see anything nor hear anything other than the pounding of my heart.

When the next hymn started I made my way down the aisle, negotiating fellow wheelchair users and baby buggies, and out into the clearer air of the Trinity Centre. The sweet, elderly lady on door duty looked at me aghast. To her I looked like a weeping member of the congregation, fleeing the service in tears. She must have presumed that I was overwhelmed by the awesome responsibility of my godfatherly duties, or so moved by singing about mountains being laid low or what have you, that I was having an emotional and spiritual breakdown. She immediately placed a hand on my shoulder and told me everything would be all right. I assured her it would be and she reluctantly let me go without counselling.

Later, after the service, several people asked me if I was okay and remarked that I looked rather red and flushed. I'm sure I did, though whether from an allergic reaction or embarrassment I couldn't tell you.

The rest of the day was lovely. We had a buffet lunch together and Elliot, slightly bemused, is now presumably safe in terms of his immortal soul until such times that he is old enough to take responsibility for it himself. Maybe, when he is older, he will be told how his godfather was moved to tears on the occasion of his baptism. Be happy, Elliot, God bless.

A Grand Day Out

2009-04-22T09:23:00.000-07:00

On Monday the boys had an Inset day and so had an extra day off school. The weather had been uncharacteristically good and so it seemed a pity to waste it hanging around at home doing nothing in particular. Polly and I decided on a grand day out. We piled the boys into the van and set off.

“Where are we going?” asked Sam.

“Somewhere where you have to behave very well, keep very quiet and you absolutely must not smile,” I told him.

“Not smile? Why not?”

“Because they don't like it.” Sam looked doubtful.

“Is it a museum?” chipped in Matty untangling himself from his ipod headphones.

“We're going to the Shed and Fence Panelling Museum,” explained Polly. “ But remember, you mustn't touch the exhibits, however tempting they are.” Matty and Sam exchanged glances.

“Why are we going there?” asked Matt not unreasonably.

“There's nothing like the smell of creosote,” I assured him. At this point we turned into a huge car park and started trawling the lanes for a parking space less than an hours trek from the entrance where a surprisingly large number of fence panel enthusiasts queued for admittance.

It took only a few more moments before the boys faces broke into excited grins. “Chessington World of Adventure!” shrieked Matty. “Can we go to Beano Land?”

I won't write a review of our day at the theme park, there are plenty out on the web if you want to know which rides are worth queuing for. Since I am unable to transfer from my wheelchair to the rides my enjoyment is vicarious. It is Polly who gets to accompany the boys on various thrilling experiences. This wasn't so bad when all they wanted to do was go on rides inspired by the Teletubbies or Postman Pat but nowadays Matty, in particular, wants to go on rides with names like Transylvania and Ramases Revenge. Polly, who gets travel sick on merry-go-rounds, spends a lot of time looking faintly green and in need of regular cups of tea. While she and Matthew hurtle round some flimsy looking scaffolding poles experiencing 4 g inverted turns at 60 miles per hour I get to take Sam to the petting zoo. We both look enviously at each other.

We did all get to enjoy the Sea Life Centre equally together. Oh, and a peculiar 3d haunted house type experience. I loved watching the boys enjoy themselves, dashing from queue to queue, and being remarkably agreeable with each others choice of ride or experience. I did find the uneven pathways and occasional steep hill exhausting and have to admit to being grateful for the odd chance to sit in the sun, reading my book, while my family were catapulted up, down and around.

Towards the end of of our day we found some rides the boys could both queue for and go on on by themselves while their mother and I enjoyed tea and coffee and tried to blot out the infuriatingly incessant jolly music that blasted from hidden speakers all around. Chessington is a fun place to visit but I would go demented if I was there too often. We both agreed that the next time we go to a place like this we will take a teenager with us to do the queuing and the scary rides with the boys. I doubt there will be a shortage of volunteers.

Eventually, as I carried an exhausted Samuel, cuddled up on my lap, out of the park and back to the van he asked sleepily when we were going to see the sheds and fence panels.

A Rite Of Passage

2009-04-19T13:07:00.000-07:00

Thank you to everyone who commented via the blog, email, IM, phone or, indeed, in person on the post about my dad. He would have appreciated knowing he would be remembered so fondly by so many.

Obviously the best thing to do with children is keep them locked up safe, wrapped in bubble-wrap and away from sharp pointy objects and strangers wanting to show them puppies or offering them sweeties. Even when they are at their most obstreperously demanding or cantankerously unreasonable you want your children to be safe. You keep them away from fast flowing rivers and you hold their hand when crossing busy roads, however much they protest and try to wriggle free, you refuse to listen to their demands for independence, explaining that you have a responsibility to them that you take seriously even if they are 23 and getting married next month.

Today Matty (now aged 9) took a big step on the long road to independence. He went to the local shop all on his own. Polly and I have been having an ongoing 'discussion' about how much freedom the boys should have. The back of our garden opens via an electrically operated gate on to a paved area in a cul-de-sac where a number of local children play, particularly a semi-feral young girl who regularly calls to ask if Matty will play with her. Despite the area being in a cul-de-sac a number of cars do use the road and we have been reluctant to let our boys play out there unsupervised. However, as the summer draws on, and the little neighbour persists, I have significantly weakened in my resolve to deny Matty the opportunity to play and have recently started allowing him to go out, much to Polly's tight-lipped concern. My reasoning is that he has to have a certain degree of street-smarts to survive in life and, frankly, if he can't survive in our quiet neighbourhood, with us in shouting distance, he won't be able to survive anywhere without an adult standing over him at all times ready to swoop in and sweep him away to a place of safety. Polly has visions of cars hurtling around the corner, driven by drunken car thieves, intent on ploughing down local children to score points in some video inspired game of Deathwish. Matty has been out, played and returned safely, even on occasion accompanied by little brother Sam. I felt it was time to move on to the next step.

We have talked about it on and off for a while. We have a newsagents and little general store just around the corner. The only problem is that you have to cross a narrow but very busy road that acts as a rat run for drivers who want to avoid the village. Fortunately they have recently sited a new zebra crossing a little way up this road. I felt this made it an ideal first trip to the shop alone type store. Eventually, and with many reservations, Polly finally agreed.

Matty was commissioned to go and buy a packet of crisps and a bar of chocolate. Clutching a £5 note he set off. Unbeknownst to him he was trailed by Polly, in her best SAS urban soldier mode, hiding behind lampposts and parked vehicles, all the way there. She hovered anxiously when he entered the shop and ducked behind a wheelie-bin when he came out grinning and carrying a plastic bag. A passing dog walker gave her a strange look but she mouthed an explanation to him and when he was satisfied she posed no threat to the little boy she was watching he went on his way. Polly dashed home and Matty found her casually leaning on a rail in the garden when he returned waving his spoils.

He was so thrilled and pleased with himself. Polly, on the other hand needed a strong cup of tea. The last time I looked she was on the computer Googling tracking devices she can sew into his clothes.

I Miss My Dad

2009-04-14T08:07:00.000-07:00

It was a Sunday evening in April 2000, our three week old son was fitfully asleep in his mother's arms and Polly and I were watching the final episode of the first series of Monarch of the Glen, one of those interchangeable 'drama by numbers' that populate the Sunday night television schedule. Archie had declared his love for some pretty Scottish lass and Hector, played by the always good value for money Richard Briars, was causing comedic curmudgeonly confusion as the show built to the series finale cliffhanger. The phone rang, it was my mum, who in a sad, composed voice, told me my father had just died. On the television, in Glenbogle, Scotland, there was a fireworks party.

I haven't written an awful lot about my father in this blog, not for any nefarious reason, and not because it hurts to remember him. The pain and shock of those first few days and weeks have long since past to be replaced by a poignant background gentle sadness that ebbs and flows, waxes and wanes, but only reaches high tides on the occasion of significant anniversaries, such as Christmas and birthdays and as now, the ninth anniversary of his death. Most of the time he hovers happily in the background of my conciousness, a benign and gentle spirit. His death was sudden and relatively unexpected. Only a week or so previously he had come to visit us to see his new grandson, Matthew. But the Muscular Dystrophy he was afflicted with had deteriorated to the extent that each day had become a wearying trial and, when I spoke to him, as I often did, I could sense a depression circling, like a carrion bird, high above him. “Don't ever get old, son,” he said. “Don't ever get get old.” He was sixty-five. He died of heart failure. His name was Roger Harry Deal.

I didn't get to know Roger myself until 1961 where upon we immediately adopted the relationship we would maintain for the rest of his life. I was his son and he was my dad. He never became my best friend, my mate, or my buddy. He was always my dad. From the first day of my life to the last day of his I could not have wished for a better father. I am sure that my brothers and sister feel similarly. He always tried to be fair and ensure that each of us got similar chances and opportunities throughout our childhood. He never resorted to favouritism however much we tried to explain why the other three did not deserve equal treatment. He was remarkably patient with us. On more than one occasion he was summoned from an important meeting to answer the telephone from one of us requesting his permission to substitute the tin of baked beans Mum had left out for our lunch with a tin of the more exciting Alphabetti Spaghetti. Another favourite telephone call he loved to recount was the one that started "don't worry dad, the Fire Brigade has gone now…"

Anyone who only knew him in the last few years of his life might have been unaware of the many things he was justifiably proud of doing in times past. Born in 1934 he grew up in Wallington, south of London, with his sister Judith and his parents Lois and Gordon. Much of his childhood was spent living through the last world war. He particularly enjoyed collecting scrap metal for the war effort and often reminded us that he'd had to sleep in a shelter down the garden.

As a young man Dad cycled all over Europe. I once found a photo of him standing stark naked about to dive into an alpine lake. When I questioned him about it he came over all wistful and said, "Son, there's nothing like swimming nude in glacial cold waters." And this from a man who moaned if you left the front door open for a second longer than necessary.

In his teens Roger was a Queen's Scout and he maintained an affection for the Scouting movement into adulthood. For many years he ran the 21st Wansdyke cub pack in the local primary school hall. My brother Mark reminded me of Bum football, a game Dad invented. It was just like proper football except that you had to slide around on your bottom, which reduced the chances of injury and exhausted 30 to 40 energetic small boys into the bargain. It was a matter of no small amount of pride to me that I achieved whole armfuls of merit badges. The uncharitable amongst my wolf cub friends put this down to being Akela's son. Dad's innate fairness would never have let that influence him. The truth was simple. I was just a little boy who wanted to please his father.

Another of Dad's claim to local fame over the same period was at the Wansdyke Primary School Bonfire night celebrations. My father would stroll out across the playing field, his distinctive gait easily recognised, and the crowd would hush as he lit the rockets and then cheer as they whooshed into the sky, signifying the start of the display. He was the Rocket Man. Dad loved being centre of attention but was not so keen when irate gardeners held him responsible for aiming his gunpowder propelled missiles so that they'd land on local residents greenhouses, smashing countless panes of glass.

If you had only known Dad when he was confined to a wheelchair you may have been surprised to learn that he used to ride a motorbike. As children we would take it in turns to dash to the red letter box around the corner and wait to be given a ride back home on the little Honda 50. The bike eventually went after he was knocked off it one to many times. Indeed, one of my earliest memories of him is him lying on the settee with his leg in white plaster after he came off worst in a collision with a Danish bacon lorry.

All of Rogers working life was spent in the service of the law. He worked for a variety of solicitors such as Shepherd Norcott & Co, Mead King & Co and Wansboroughs before finding a long-term home in the legal department of Avon County Council. One part of his work involved doing conveyancing work for the police. This involved going out in to the countryside and looking at radio masts. I asked him whether he could tell anything by just looking at a 200 foot high metal tower. He confessed that he couldn't but that he always went on the trips because he enjoyed the ride in a police car.

Dad worked at Avon for twenty years and became a well known and easily identified figure regularly seen coasting along corridors of county power in his electric wheelchair. In 1994 his service was recognised when he was invited to Buckingham Palace for one of the Queen's Garden Parties. Although it has to be said that when it came to an option between sitting in the baking sun on the off chance of meeting Her Majesty and going and getting a cup of tea the choice was not a difficult one.

After retirement he took up voluntary work at Bridge Farm Infant and Junior School where he listened to children practice their reading. One can only imagine the impression he made on the Offsted School inspectors if they ever heard him threaten to flay some little child alive or have them keel hauled if they didn't sit quietly. The children found this hysterical because by this stage dad was so disabled they had to hold up their own books and turn the pages for him. They appear to have loved him. Dad was also a governor of the infant school.

Throughout our childhood family holidays seemed to involve driving vast distances to various windswept parts of the country. Not for the Deals were cushy beach holidays and warm sunshine. Armed only with a Thermosflask and a Tupperware container we'd set out visit various exposed lengths of Hadrian's wall. And let me reassure you, this was in an era long before softy visitor centres had been built. Even today I can't look at an expanse of moor land with out mentally inserting windscreen wipers and a tax disc in the corner.

All this, of course, changed the moment my brothers, sister and I left home. Suddenly Mum was able to persuade Dad to jet off around the world with her. Together they visited Australia, Thailand and much of America and Europe. In 1990 Simon, Helena and I went with them to California. It was a fabulous holiday but I missed the Tupperware.

On one occasion Dad was in Turkey with Mum and his sister Judith. My mother and Judith had gone in to a mosque that was inaccessible to Dad because of the steps. Dad told me that he'd settled down in his wheelchair along side the mosque and dozed off in the shade. He awoke with a start to find local people dropping money into his sun hat. "No, no," he cried. "I'm not begging. I don't need your money, I'm English! English!"

Dad was never more English than when he was abroad. Helena tells of a time she and Mum were in Madrid with him. One evening they dined early in a sea food restaurant which was virtually empty when they entered. A huge platter of shelled and betentacled creatures was placed before them which Dad enthusiastically crunched his way through. (Helena maintains that one of the delicacies was little turtle's feet.) Dad's bonhomie so won over the staff that they plied him with generous glasses of free liqueurs. When the time came to exit the by now crowded restaurant Dad was weaved through the tables in his wheelchair proclaiming that Gibraltar was British and that he was a Cointreau lout.

It was amazing that Dad would eat exotic fare whilst abroad. At home he was deeply suspicious of all food he considered 'ethnic'. This, it should emphasised, had nothing whatsoever to do with race or creed but whether a meal contained the hated lentils. We would frequently phone home to be told in a morose voice that "your mother's cooking me something 'ethnic' for tea." We had visions of Mum serving Dad cus-cus with peppers and a mung bean salad. Usually it turned out to be spaghetti bolognaise.

Dad was something of a Luddite when it came to technology. He never learned to set the video and there are dozens of tapes with a half hour programme two thirds of the way through because he and Mum were going out for the evening. Helena and Andrew offered to buy him the equipment needed to go on line digitally via the television. They asked him if he'd prefer e-mails and the information super highway or an Easter egg. An Easter egg Dad replied. His pleasures were simple. Single malt whiskies and Brookside on the telly.

But his greatest pleasure was his family. We're proud to say that he was proud of us. He loved the fact that we loved him. He took pride in our achievements and would tell anyone who would listen what we all were up to. We take some comfort in that the last few months of his life gave him many things to delight over. Simon and Jaspreet regularly visited him with his grandsons Oliver and Oscar. He was proud at the fact that Mark is researching a doctorate in Disability Issues (which he subsequently gained). Helena and Andrew had just returned from living abroad and so he once again got to meet the then baby Alexander. His last Christmas was made especially exciting by the controversy and success of a song I had helped write going to number one in the charts. It was the first time he'd watched Top Of The Pops in decades. He was even happier when Polly and I had our baby Matthew Tudor and shared more than anyone our relief that Matthew had not inherited the Muscular Dystrophy that has affected our family in so many ways over the years. It will be one of the great sadnesses of our futures that our children will grow up not knowing their Grandfather. But they will of course hear all the stories. I also find it sad that he died before two of his grandchildren, Theo and Sam, were born.

I once asked what was the best thing he'd ever done. He replied "I married your Mother." Roger was married to our mother, Dilys, for nearly 40 years. I cannot adequately tell you how much he loved her. Oh, he would moan and grumble that she was studying for her degree or at the Disabled Living Centre or in London on the Arthritis Care Help Line or off saving the world. But hardly a phone call went by with out him extolling her virtues in some way or telling us how wonderful she was. I don't wish to give the impression that theirs was some kind of Mills and Boon romance. Hardly. Theirs was a marriage forged in the cut and thrust of family life. They both worked, had four children at the local comprehensive school, and half the family was increasingly disabled, but, thanks to our mother and father, we never once experienced instability or insecurity. I know that I speak for my brothers and sister when I say that if our children grow up loving us half as much as we loved Mum and Dad then we will have been good parents.

Nine years on I still hardly go a day without some passing thought of him. Things happen that I would have enjoyed sharing with him, or would have sought his advice over. He, more than anyone, could have related to recent changes in my condition.

Many different people will remember my father in many ways. He was a quiet man with a huge personality and a sandpaper dry wit. I don't suppose there's ever a really good time to die. But we, his family, take a little comfort in that there were no family schisms left unhealed. Dad knew we were proud of him and I know he was proud of us. I suppose that is at least one definition of a successful and happy relationship.

Roger Harry Deal, 1934 -2000.

One Year On

2009-04-12T09:57:00.000-07:00

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.

Thieves Paradise

2009-04-10T05:02:00.000-07:00

Since today is Good Friday I thought I'd share this sketch from the show Burning Questions. I have to admit that this is one of my favourite sketches, not least because, although it always got big laughs, I was once accosted after a show and told I would probably burn in hell for mocking our Lord on the cross and should be ashamed of ever having written it. A little harsh I thought but see what you think.

THIEVES PARADISE

[THE SKETCH TAKES PLACE IN THE BAR OF THE LOCAL PUB. THE TWO
CHARACTERS MAY BE SUPPING FROM BEER GLASSES.]

A:
It near broke my heart to see old Barney hanging there.

B:
Hanging where?

A:
On a big wooden cross.

B:
So why was he doing that?

A:
Well mostly because of the nails.

B:
What, real nails?

A:
Yes.

B:
That's a bit barbaric. You could kill someone like that.

A:
They did. Barney, Jim and that Jesus.

B:
So Barney's dead is he?

A:
Yeah, he was crucified.

B:
Nasty.

A:
He was a good bloke.

B:
Well, he wasn't that good. He was a thief. That's why they crucified him I expect.

A:
Yes, but he was a good thief.

B:
No he wasn't. He got caught.

A:
He never had any luck.

B:
No.

A:
Fancy breaking into a geezer's house when you absolutely positively know he's not going to be there, and then being caught in the act when he comes home totally unexpected.

B:
Yeah. What was that bloke's name again?

A:
Lazarus.

B:
Chance in a million that.

A:
Yeah. Poor old Barney.

B:
Mind you, Jim wasn't much better. I mean, fancy breaking into a house only to find the owner had given everything away.

A:
Blooming Zacchaeus.

B:
And fancy both of them breaking into that gate keepers house...

A:
Only to be spotted by an eyewitness.

A and B:
Blind Bartimaeus.

A:
Still, in their line of work they knew they were taking a risk.

B:
What about that other bloke?

A:
Who, Jesus?

B:
What was his crime?

A:
It was funny that. No one seemed to know.

B:
What was he? A thief? Con man? Fraudster? Mugger?

A:
Rabbi.

B:
What, a holy man?

A:
Apparently. He had a sign on his cross saying he was the king of the Jews. But I heard people saying that he was the Son of God.

B:
If he was the Son of God, what was he doing nailed to a cross?

A:
That's what Jim said. He gave him a really hard time, mocking him and shouting at him to save himself and them.

B:
Jim was a hard man.

A:
As hard as nails.

B:
Not quite... What about Barney?

A:
Barney was a bit different. He seemed to recognise something in Jesus.

B:
It's a pity he didn't meet him earlier. He might not have ended up where he did.

A:
They seemed to get on well enough though, given the circumstances.

B:
How do you mean

A:
I heard Barney ask if Jesus would remember him when he came into his kingdom.

B:
As if Jesus didn't have enough on his plate.

A:
That's what I thought. But Jesus made him this promise, see?

B:
What kind of promise can you make to a dying man?

A:
He said, "I tell you the truth, today you will be with me in paradise".

B:
What do you think he meant by that?

A:
That he was for... for... for...

B:
Four sheets to the wind?

A:
No, that he was for... for... for...

B:
For he's a jolly good fellow?

A:
No, that he was for... for... for...

B:
Fortunate?

A:
Hardly. No, that he was forgiven.

B:
Oh.

A:
Yeah, nice thought that.

B:
Any way, I'm going to miss old Barney.

A:
Yeah, but at least his suffering is over.

B:
Was that Jesus the same bloke who's been preaching all over the place?
A:
I suppose so, yeah.

B:
I heard him once.

A:
Oh yeah?

B:
I hope that when he made him that promise he knew what Barney's profession was.

A:
What do you mean? A housebreaker? Well what does that matter now?

B:
Because it was Jesus who said, "In my Father's house are many mansions."

A:
Then Barney really will be in paradise.

© Stephen Deal, 1993

Deals On Wheels

2009-04-07T12:38:00.000-07:00

Just a very brief post today.

We have just got back from Greenwich. We were visiting my aunt Megan who had need of small people to retrieve some pots that fallen down the side of her garage. As a reward for supplying her with child labour she took us all out for lunch at the restaurant in the park. Afterwards we spent time whizzing around on roller blades, scooters and electric wheelchairs reprising our Deals on Wheels turn in our local park, except that Greenwich park has much more space.

Now, I'm putting the boys to bed since Polly has gone out cavorting. (All right, she's gone to Pizza Express with Becks and Catherine.) How many times do you tell two little boys to stop talking and go to sleep before you have to act on the threat to a) confiscate their Nintendo DS's for the rest of the holidays, b) deny them any Easter eggs, or c) flog them to within an inch of their lives? I reckon once more should suffice. You'd think they'd be exhausted after a day of child labour and wheeling.

Killer Zombies

2009-04-04T07:16:00.000-07:00

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.”

The Blue Badge And A Grape

2009-04-02T05:01:00.000-07:00

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.

A Day In The Life

2009-03-31T12:08:00.000-07:00

Polly has been off Clown Doctoring at a hospital in London somewhere. I'm not allowed to give you too many details but it involves her speaking in a west country accent and saying 'curly-wurly' a lot. Oh, and she wears a carrot on her shoulder. As she left this morning she called out to me, “Have a good day,” and then she vanished into the metropolis. I settled down for a 'good' day, by which I mean quiet, and booted up the computer to check emails and manage my football team on Facebook.

11.00am The doorbell shrills and shrieks and warbles at aircraft taking off volume to indicate someone has arrived at the front door and wants my attention. I may have mentioned before that our doorbell is VERY loud because I am disabled, and therefore, presumably deaf. (Visitors to the flat who are here when it rings often think it must be a fire alarm and start tying sheets together in the hope of making their escape.) I attempt to use our intercom system to let whoever it is in but this proves easier said than done. It is supposed to operate via an 'environmental control' system but doesn't any more, so I have to manually push buttons on a unit fitted to the wall. On bad days it can take several minutes for me to align myself in such away so as to be able to press first the 'talk' button and then the 'enter' button. Often, by the time I have, whoever it was who rang the bell has grown old and given up. Today is an okay day and I manage to let the visitor in after he has identified himself as an engineer. You can be sure that if he had said 'robber' I would have asked for further identification. The engineer turns out to be from the Royal Brompton Hospital and has come to fix the BiPap ventilator which has been beeeeeeeeeeping all night for no good reason. (Polly maintains that the alarm should only go off if I am seconds away from death, and only then if it has tried to resuscitate me by itself.) 20 minutes later the engineer gives up and replaces the machine.

11.40am The ear-splitting doorbell goes again. Once again I successfully negotiate the entry system and once again someone identifying themselves as an engineer comes in. This one, from a company whose name is made up entirely from initials, has come to fix the back door opener. He has come equipped with a young man whose job it seem is to hold things. It takes an hour of mild cursing and a lot of Allen keys before the automated door stops opening and shutting of its own accord. The young man passes things beautifully.

12.30pm Kalepo, one of my carers, arrives to help me with lunch and to go to the loo. Fortunately he knows how to let himself in so we are spared being deafened by the doorbell.

2.50pm Once more my ears are made to bleed. This time it is a specialist dermatological district nurse. My skin has been erupting in mini-pimples since a change in my medication. I thought I'd left acne back in my adolescence so I am grateful to see him. He has given me a prescription for a number of salves and lotions that should restore my skin to adulthood.

3.20pm The district nurses (or big stick nurses as Sam calls them) let themselves in and help me go to the loo again. They also wrestle with the coffee-maker, a technology they regard as suspiciously futuristic.

3.50pm Our friend Andi arrives back from the school with Matty and Sam. Within seconds they are arguing about whose turn it is to go on the Playstation 3. I do my daddy thing and make them share.

6.00pm Godfrey, another carer, arrives to help me give the boys their tea that has been in the slow cooker since Polly prepared it this morning.. He leaves 50 minutes later.

7.30pm Both boys fed, showered and ready for bed. Sam read The Avocado Baby, Matty surgically removed from computer. I am the daddy! Now, where's Polly?

7.50pm Polly returns, all curly-wurly'd out.

In The Dead Of Night

2009-03-27T12:01:00.000-07:00

Tonight is another night nurse night. Things have improve from the earliest encounters. (See here, here, and here, for previous posts about the night nurse saga.) Aside from some rather iffy understanding regarding how electric over-blankets work and me trying to find the doorbell to press and summon the nurse I have made some progress in getting a nights sleep. Polly is also getting a better nights sleep when she moves to the sofa-bed but the jury is still out on whether the disruption is worth it. Mind you, after last night she will probably be grateful for any sleep at all.

I was awoken at 4.30 this morning by an irate Polly. “What is it now?” she demanded of me. “Do you want a painkiller or what?” I swam into wakefulness and croaked, “what?” (I'm not at my most loquacious at that time of morning.) My mouth was sandpaper dry so I asked if I could have a sip of water. The reaction I got was akin to me having asked her to rustle up a grilled sturgeon with peeled grapes on a bed of larks tongue and slipper orchid petals whilst gently massaging my toes in calf-skin mittens. There are US army patented incendiary devices that give off less heat and fury than my beloved wife early this morning. Bemused I responded wittily with another “what?”

Polly stomped around the bed (or rather as she describes it, climbed around the end of the metal framed bedstead, negotiated the air-mattress pump, stubbed her toe on a wheelchair wheel, tripped over the charging cable and caught her hand in a ventilator hose) and shoved a glass under my nose and indelicately inserted a straw between my parched lips.

“Thank you, darling,” I said and prepared to drift off back to sleep. Polly seemed to find this offensive.”Oh no you don't,” she said through gritted teeth. “Five times! Five times you have woken me up. Don't you dare just go back to sleep.” “What?” I replied. (I swear it was all I could think of to say.) “I haven't done anything.” Talk about 'light the blue touch-paper'. She went incandescent. Apparently I had woken her several times through out the night to move my leg, shoulder or arm. I had absolutely no memory of this, I promise you.

Polly listed the catalogue of interruptions she had endured. “ You keep waking me up by shouting Polly, Polly, help me! Help me! Move my shoulder! Help! Help!” When I intimated that she may be exaggerating I inadvertently took my life in my hands. “It's all right for you,” she growled. “You just go straight back to sleep! I, on the other hand, am left wide awake, unable to go back to sleep, because I'm listening out for for your every groan, creek or fart in case you are suffocating or choking or something!”

All I could think to say was “What?”

Polly stomped back around the bed, stubbing her toe on the battery charger, and crashed huffily back under her duvet. “If you just go back to sleep I will poke you with a sharp stick.” I was going to ask her to scratch my shoulder blade but thought better of it. I closed my eyes instead.

So, tonight, as she snuggles down on the sofa-bed, I hope she appreciates the sacrifice I'm making. Instead of simply calling out for help I will have to press the button on my doorbell and wait for the nurse. That's love that is.

Sleep well.

Parent's Evening

2009-03-26T12:31:00.000-07:00

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.

Get Your Skates On

2009-03-23T09:10:00.000-07:00

Yesterday was Matty's ninth birthday and, as you will know if you have or ever have had children, there is nothing quite as exciting as a nine year old child's birthday. We have been building up to the day for months and scientists have yet to devise a device that can measure the vibrational frequency of a boy on the eve of his birthday.

Matty has been choosing his presents for months, with every piece of moulded plastic being carefully analysed and discussed in the playground. In truth he would have been happy if all his gifts came on shiny discs that slot in to various games consoles and computers and that give life to colourful animated hedgehogs and other super-powered creatures. Unfortunately for Matty his mean old parents don't consider unplugging one console and plugging in another sufficient exercise for a growing boy. This is why, along side the shiny discs, there was a large box containing roller-blades and enough knee, elbow and hand pads for him to safely play American football if he should so wish.

It was a beautiful Spring day and so we all trooped outside, after the half hour or so it took to strap and nail on all the padding, to watch Matty glide gracefully around the cul-de-sac. To be fair to him he did really well for a first-timer, managing to mostly stay upright. A friend, Emma, was passing and remarked that he looked like a baby gazelle, which is exactly what he did resemble, a new born gazelle, a tangle of legs, taking its first gangling steps on the Savannah. You half expected a lion to leap out and eat him. To help him gain confidence and to fend off predators we found an exciting new use for my wheelchair. With Matty holding on first with both hands but soon with only one, I towed him up and down the road with him shrieking with laughter and shouting “I'm doing it, Mum. I'm skating!” at the top of his voice. And with his little brother circling him on his scooter cheering him on, it was a joyous occasion.

To add to the excitement yesterday was Mother's day and both Polly's mum and mine had come to visit along with my aunt Megan. Also, my brother Simon came over with one of his boys, Oscar and their puppy, Mini the Minx, leaving his eldest son, Oliver, behind, stapled to a desk to complete a chemistry homework assignment. Mini, some kind of terrier, I think, was wonderfully cute and I was once again relieved that her brothers and sisters had all got homes because Polly was looking decidedly tempted. And to complete this stellar line up, my sister Helena was able to join us having flown in from Malaysia on her way to a business meeting in Houston, Texas. It was lovely seeing everyone and it made Matt's birthday especially special. It was a birthday that seemed to have gone on forever.

On Friday, after school, Matty had invited several friends home for tea and to watch Igor (a CGI animation) on DVD. They decorated cakes and ate popcorn and hot-dogs as well as playing the odd party game. Then on Saturday he and three other friends had gone to see Horrible Histories – The Woeful World War II at Wimbledon theatre after a Happy Meal fuelled lunch. All in all, a birthday to remember.

Sam, who will be five in May, has been planning his birthday since about last July and now that Matty's is out of the way is preparing to step up to the mark. Every other sentence he utters begins, “when it's MY birthday...”

Meanwhile Matt has a whole army of Glatorian Bionicles to build and organise for battle in the arena with their Thomax. And if you don't have a young boy-child around that last sentence will be utterly meaningless.

Night Nurse Night Three

2009-03-18T13:55:00.000-07:00

Last night, at about 9.00pm, after surgery had closed, Dr Toosy, my GP, dropped in to go through and reassess my medication. We have tweaked and adjusted the list with the aim of getting me a decent nights sleep. And since last night was the night of the night nurse night three I could really do with one. If you've followed the story on Night Nurse and Night Nurse Night Two you may feel a modicum of sympathy.

Polly and I have continued trying to make this work for both of us. Polly has forsaken her princess and the pea act and tried sleeping on the sofa-bed mattress which she had laid on top of a futon and stabilized with the sofa cushions. And, after years sleeping along side me, she has found the absence of the continual rhythmic noise of my BiPap ventilator distinctly off-putting, so she moved the dehumidifier into the living room with her and set it to maximum so the ensuing hum could lull her to sleep.

Meanwhile, at my end of the flat, I had been equipped with a wireless doorbell and the receiver was placed in the kitchen. This meant the nurse could ensconce herself in relative comfort with the kettle and enough space to lay out her comprehensive collection of celebrity gossip magazines and there would be no need to bathe the hall outside my bedroom with a million candle powered floodlight so she had light enough to read them. All that need happen should I need her was for me to press the button on the doorbell and she could forsake Jennifer Aniston for a moment and shuffle up the hallway to attend to my needs. Simple. You'd think so, wouldn't you.

Now, as has been mentioned in previous posts, I feel the cold and lack the means to regulate my temperature efficiently. I also find warmth to have a analgesic effect, especially when I am tired and trying to get to sleep. To this end I have an electric over-blanket inside my duvet cover. I usually have it set at maximum (9) when I first get into bed and turn it to a lower setting after a while. Last night Polly showed the nurse the simple control for the blanket and explained that I'd like it turned down to about 3 in an hour or so. The nurse nodded sagely and returned to the kitchen and to the trials and tribulations of Lily Allen.

An hour or so later I put down my book about television in the 1970s, sated with memories of Kojak, Alias Smith and Jones and Fawlty Towers, and now ready for sleep. The bed was beginning to get uncomfortably warm so I rang my doorbell and heard the bell chime in the kitchen. The nurse came down the hall and politely asked how she could help. I asked for a sip of water and for her to move my arm a little and turn down the electric over-blanket to it's number 3 setting. Moments later I was drifting off to sleep.

I awoke from a dream wherein I was an oven-ready chicken being roasted for dinner. Bathed in sweat I realised that I was being cooked in bed by my blanket which must still be on at its highest setting. I fumbled for my doorbell and summoned the nurse. Once again I asked her to turn down the blanket to the number 3. She fiddled with the control and confirmed it was set on 3. Relieved I slipped back to sleep.

Sometime later I was in a sauna with the door locked on the outside and the temperature indicator reading 'You Are About To Melt'. For some reason my night time carer had failed to actually turn the blanket down it seemed. I rang my bell. Moments later she was assuring me the control was set on 3. Perhaps my faulty body temperature control was even worse than usual. I asked her to turn the blanket down to 2. She did so.

The inside of the volcano was very hot indeed. Molten lava dripped onto my securely bound body. I struggled into wakefulness, bathed in sweat and entangled in my red hot duvet. Once again I called for help and once again I was assured that the control was set at 2. This was very strange and very very uncomfortably.
By the time I had walked through the Kalahari desert dressed as a long-haired pink kitten in a frogman's suit and later been barbecued over a pit of burning coals whilst wrapped in a woolly mammoth's fur coat I was beginning to become stressed. Surely my internal body temperature control wasn't that screwed up?

Puzzled, I asked for the controller to be placed in my hand by the nurse, who was by now regarding me as demented, so I could turn it off myself. As the bed finally began cool I slipped into an uneasy sleep. A glance at the clock told me it was 5am.

An infeasibly short time later Kalepo and Godfrey were calling me awake. As I clawed my way to consciousness I asked to see the controller that had caused me such heated distress all through the night; the controller the nurse had assured me was turned right down. It wasn't of course, it was still set at 9.

So what had happened? Well, it's possible that the nurse was getting some perverse pleasure from torturing me but I'm willing to concede that that is improbable (not to mention libellous).A more likely explanation is that she confused the on/off slider switch which has 3 stages with the temperature dial which has 9. When I asked her to set it to 3 or 2 she thought she had, but in actual fact she had set it to either 75 minutes or 12 hours. It does beg the question why she failed to notice the dial but more significantly why after the third or fourth time I called her and asked her to check it was turned down she didn't wonder about looking at the rest of the controller, which is, after all, only the size of my hand. Could it be that she thought I was making a fuss over nothing? Or, more likely, that she thought I was a bit simple and kept asking her to the same thing over and over again because I didn't know what temperature I actually wanted. I don't know. What I do know is that it was yet another long and difficult night.

Next time it'll be Night Nurse Night Night Four. Fourth time lucky?

Red Nosed Young Carer

2009-03-15T12:03:00.000-07:00

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.

Night Nurse Night Two

2009-03-13T06:26:00.000-07:00

I am writing this through a fog of sleeplessness. Night two of the night nurse experiment is over and both Polly and I are growling and groaning in bleary eyed irritation at each other and the world in general. I don't think I spent more than 30 consecutive minutes asleep all night. Having someone parked outside my slightly ajar bedroom door shuffling and flicking magazine pages made out of plate-metal and casting shadow puppets with the blindingly bright reading lamp cunningly positioned to illuminate my bed like a flood-lit football stadium does not for a restful night make. It got to the point where even her breathing echoed round the bedroom like a wailing banshee, shredding my nerves as effectively as a cheese-grater on a broken tooth.

Meanwhile Polly was ensconced in the living room, sleeping on a mattress balanced on the sofa-bed, listening for the slightest disturbance with senses trained by nine years of motherhood. The mattress made the bed more comfortable she tells me, (or, more accurately, snarled at me) but having someone else in the flat, outside the children's room, made her night every bit as restful as mine. Every time the nurse moved, coughed or shuffled her newspaper Polly assumed the boys were under attack and was jolted awake, ready to fight off mad axe-men or rabid wolves. (She was getting a little hysterical by this stage. Sleep deprivation does that to you.) She also said she felt like The Princess and the Pea, balanced on her mattress, balanced on the sofa-bed. Only, of course, it wasn't a pea but a piece of Lego and a model submarine that kept her from Morpheus' gentle grip.

Suffice to say, by next week, when we have night nurse night three, we will have made some changes to the arrangements. I'm thinking about removing every light bulb in the house and sound-proofing the hallway with foam padding. That's if I can stay awake long enough to arrange it.

Night Nurse

2009-03-11T11:36:00.000-07:00

I went to bed last night chanting a mantra, “don't freak out, Stephen, don't freak out.” I'm pleased to say I didn't but it was a close run thing. It was the night of the night nurse.

During the course of last weeks multi-agency mega-meeting we asked if we could have some night time respite care so Polly could get a good nights sleep without me waking her every hour or so to move my shoulder or give me a sip of water. Somewhat disconcertingly it was agreed instantly and before I'd really taken it on board it was arranged. For two nights a week I will be getting a night nurse to attend to my every whim. Sounds good? Last night I was faced with the reality.

The nurse would come from Marie Curie which has all sorts of connotations that I hadn't really absorbed. Was somebody trying to tell me something? I checked my medical records but no, I was disabled not terminally ill. Apparently imminent death is not a prerequisite for respite nursing care.

So, cometh the hour, cometh the nurse. I had been put to bed as usual and had settled down to read a good book (The Awful Secret by Bernard Knight in case you were wondering), when the doorbell rang and a uniformed nurse arrived. Polly introduced her to me and then decamped to the sofa-bed in the living room for her night of uninterrupted quality sleep.

I don't know if you have ever tried to sleep when you know someone is watching your every move, breath or creaking joint but I found it rather disconcerting. Originally the plan had been for the nurse to be in the room with me but I put my wheel down and said no so she was settled down in the hallway outside our bedroom with a lamp, armchair and small table. The lamp had a low wattage bulb in it, sufficient to read OK! magazine by and in our practice run had seemed dim enough not to disturb me as I lay in bed. In reality, of course, once my eyes had adjusted, the light seemed bright enough to perform micro-surgery by. Eventually I drifted off in to a fitful sleep but was awoken by a muffled cough. My shoulder hurt so I called for help and was instantly responded to. The nurse adjusted my arm and gave me a sip of water. Sleep came and went over the next few hours. I felt obliged to call the nurse whenever I awoke because I didn't want her to feel unwanted or that her services were unappreciated. I hoped Polly was sleeping soundly because I sure as heck wasn't.

At about 3.30am I asked if I could have a painkiller. The nurse leapt into medical action and seconds later I was fully medicated. Minutes later I was sound asleep at last.

Morning came and the nurse departed having acquitted herself with the professionalism expected of her uniform. Bleary eyed I arose and eventually made my way to the living room to find Polly returning from the school run. “Good night?” I asked. “Have you ever slept on our sofa-bed?” she responded somewhat irritably I felt.

So what have we learned? Well, it's early days yet, and I'm sure I can become accustomed to sleeping in a flood-lit room under the watchful eye of a uniformed care-giver. Whether Polly can get used to the sofa-bed is another matter. After all, the whole point of the exercise is to give her a good, restful uninterrupted nights sleep. It may be that without a spare room in which to install a proper bed the whole respite care thing is less restful than the alternative. We'll have another go on Thursday and see if we can tweak things to make them better. I'll let you know, if I'm not too sleep-deprived to write.

Sweeping The Playground

2009-03-09T05:08:00.000-07:00

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

Ask And It Shall Be Given Unto You

2009-03-06T09:16:00.000-08:00

As you will have gathered, if you have been reading this blog for any length of time, that I have had certain issues with what we in the business of being disabled call my care package. The care package, as you will have deduced from its title, is the whole bundle of different factors that go into keeping me functioning as a fully-fledged burden on society. This package includes GPs, district nurses, social services, occupational therapists, the Primary Care Trust (PCT), home care agencies and Uncle Tom Cobbley and all. Coordinating this disparate group of agencies requires the administrative abilities of Paris Hilton's publicist.

The recent deterioration in my condition has, in combination with changes in the provision of the care package, resulted in a degree of misery for both Polly and myself. Trying to manage everything has become too much. For example, with me needing help feeding myself, tea takes longer but the boys still need to be showered and in bed at a decent time on a school night. We needed some extra help around bedtime to get things ready before the carers arrived to tuck me in and read me my bedtime story. It took significant negotiation to arrange for one of the carers to come half an hour early. Or, that as my medication wears off at around 3am I wake up in pain. A change of medication might help but equally a different kind of air mattress might be the solution. We need to liaise with the doctor, the occupational therapist and the PCT for funding a change of bed. Disturbed nights are taking their toll on Polly, so we need some kind of occasional night care. Carers don't work past 10 o'clock so night nurses are needed, but who pays for them? And so it goes on and on. One change leading to another and more and more agencies needing to be juggled. One agency can't work independently of the others but it seems almost impossible to get them to communicate with each other.

Until now.

On Thursday morning the great and the good gathered in our living room. My GP, Dr Toosy was there, as was Tina the District Nurse who is also my care manager, Karen from the PCT continuing care team came with her cheque book, Valeria from social services was there to represent Polly's interests as the primary carer and Valerie, an Occupational Therapist completed the assemblage. Polly had been up until 1.30am typing up a statement and list of objectives.

The opening statement read -

As a family Stephen and I have always tried to maintain our independence, and addressed any issues around Stephen's condition as necessary. Until this time we have, through good relationships with all of the professionals involved, had a mostly positive experience regarding Stephen's care needs. During Stephen’s time in the social care sector we had a fairly consistent approach to Stephen's care. We felt independent and empowered by the decisions we made and more importantly we were able to live a “normal” family life.

Under the current medical model we have found ourselves left floundering, with Stephen's condition regarded as needing nursing care we are working within a system which has no ability to see Stephen's needs as anything other than medical.

At a time when we as a family have to come to terms with dramatic changes in Stephen’s condition, we are also having to fight for any help, or indeed a voice. We feel let down and manipulated by this change, and feel a total inability to access a changing level of care, which addresses both Stephen’s needs, and those of our family.

I personally feel I have been cast in a role of carer, which negates any other, such as wife, or mother, or provider that is something, that is for both of us quite unacceptable.

I have also felt that I have had to question my own ability to care for someone I love, and have been brought at times over the past months to feel I could no longer cope. However,when I have voiced these concerns, I have felt that no real help has been offered or worse coerced into continuing by being offered solutions such as residential care. Which is something we do not want to consider.

When the quality of the memory’s you build for your children is defined within funding budgets, when your life is dictated by decisions made by PCTs, when even your most basic of human needs has to be met by someone, you find yourself in a position where you need to ask others for help…

That is why we asked you all here today, so that together we can find a creative ways of addressing Stephens care needs and redressing the balance of Stephen's changing condition as being part of, but not all of who we are.

The statement focused everyone's attention and the list of objectives Polly had prepared kept us to an agenda. Firstly we dealt with some of the night time issues. Dr Toosy agreed to review my medication regime and the OT agreed to look into a new bed and air mattress which the PCT agreed to fund. Next we looked at meal times. Extra help has been arranged which will increase the range of food I can eat, especially at breakfast, and provide assistance for me to prepare meals for myself and the boys when Polly is working. Funding is also being organised for the Neater Arm device (see the I, Robot post) which will vastly increase my ability to feed myself. Some night time care has been organised to give Polly some respite and also to allow us some kind of evening social life (babysitters not withstanding). And the possibility of respite care and family respite holidays is being looked in to.

More was achieved at this meeting than had been achieved by countless hours of phone calls, letters, emails and meeting with individuals over the last year. I can't thank those who came enough. It was truly gratifying seeing all these disparate agencies working smoothly together, efficiently getting things done. It is also reassuring to find that they really do want to help. Having the OT who has to organise something in the same room as the doctor who says it is necessary and the person who has the authority to arrange the funding for it is amazing, and surely a model for how things should be done. Special thanks to Tina for coordinating everyone.

Obviously we have yet to see how the results of the meeting pan out. I'm sure there will be some tweaking that needs doing before it all runs smoothly but it feels as though some real progress has been made.

After the meeting I felt quite mentally and emotionally drained. It is difficult being at the centre of such intense attention, even if it is for my own benefit. I know Polly felt likewise. We we were both wound up for battle and then found everyone being terribly nice and agreeable. It was disconcerting. I think we were a little hysterical when we began to wonder how far we could have pushed things.

“I want all the care staff to dress in lavender and sing Abba songs,” I suggested. “I want a pig and a stick with which to poke it,” added Polly. We had lunch to calm down.

I will, of course, keep you informed as to how it all works out.

New Post Coming

2009-03-05T07:03:00.000-08:00

I AM writing a new post but it is taking longer than anticipated. My stylus control has gone to pot. I'm left handed but I'm writing this with my right hand, picking it out on an on-screen keyboard. Please be patient with me, I've got lots to tell you about the multi-agency case conference we've just had.

Meanwhile, Sam's current favourite joke.

What's black and white, black and white, black and white, black and white, black and white?

A penguin rolling down a hill.

Jerry Bashing

2009-03-01T05:58:00.000-08:00

Every so often I find myself writing on subject about which a few days earlier I had no intention of even mentioning. Indeed, the subject of today's post has barely entered my consciousness in the last 40 years. As a young boy I would sit with my brothers and watch black and white movies on our black and white television on a Sunday afternoon. Occasionally there would be a screwball comedy featuring Dean Martin and a gangly, goofy guy called Jerry Lewis who mugged and gurned his way through a series of wacky adventures until Dean got the girl.

Roll on 40 years and Dean has gone to the Rat Pack in the sky and Jerry has just about vanished from our consciousness here in the UK. On the other side of the Atlantic however, Jerry Lewis is famed for fronting an annual Telethon to raise funds of the Muscular Dystrophy Association and last week was honoured with the Jean Hersholt Humanitarian Award at the Oscars in recognition of decades of raising money and awareness for and about the condition. Standing ovations all round, wipe away the tears of gratitude and on we go. Or not.

Outside the Oscar ceremony venue a handful of protesters gathered to wave placards and spit vitriolic bile against the academy's decision to honour Jerry Lewis. Overly sensitive film critics? Apparently not. These were your genuine wheelchair bound, ventilator using, crutch waving disabled folk, outraged that this 83 year old comedian was being recognised for his humanitarian goodness. Why? Because, he has dared to patronise us! Because he has offended our civil liberties! Because he's not 100% pc! Because he ONLY managed to raise 2 BILLION dollars! (Sorry, forget that last one.)

Apparently Jerry has said a few things that has upset these fine (non)upstanding people. I'll send you over to Blake and Matt at I Hate Stairs and Paula at One Sick Mother for reasoned analysis of the situation and to The Trouble With Jerry for the protagonists point of view. You have a quick look while I have a cup of coffee.

One cup of coffee later...

So to summarise, the The Trouble With Jerry brigade see the awarding of the Oscar as tantamount to endorsing bigotry. Jerry Lewis evokes pity for MD sufferers as a means of fund raising. It's not a cure we need but a respect for our civil liberties, an appreciation of our value in society. Jerry perpetuates an old fashioned view of the disabled person as a sufferer, trapped by their condition and their wheelchair. Don't give us money, give us respect. Blake and Matt, on the other hand, say bugger that, give us a cure. Paula thinks the protesters are being obtuse by targeting Jerry, who has, at no small cost to himself, actually got up off his backside and done something practical about tackling the real enemy – Muscular Dystrophy.

In some ways I admire the anti-Jerry protesters who have organised themselves, no doubt overcoming considerable physical obstacles, to get media attention for their cause. They seem, for the most part to be young and earnest, believing themselves to be little Davids battling the Goliath of old-style attitudes to disability. They don't want your pity, they don't want your money, they want your respect. They aren't seeking a cure because that demeans them as vital fully human citizens who aren't sick but are merely differently-abled. Jerry is the antithesis of such right-on, can-do attitudes. He doesn't really care. He just wants his face on the telly doing something 'good'. In fact, it's not Muscular Dystrophy that's the problem, it's Jerry and his patronising $2,000,000,000. Don't reward him – string him up.

Or may be not...

Oh for things to be as black and white as those long a go movies. Disability good, Jerry bad. Listen kids, it's not that simple.

Firstly, some of us with MD do want a cure. Muscular Dystrophy is truly horrible disease. It strips away your physical abilities year by year, month by month. (Speaking from my own experience) First you can't run fast, then you can't run at all. Then you can't walk. The muscles in your face dessert you, blanking your expression and causing some people to think that reflects your mind. You can't lift your arms above the shoulders, you can barely move your legs. Your eyes don't close when you sleep so they are constantly dry and scratched. Eventually you can't move when you are lying down, cramps and sores can become a problem. As the muscles weaken further you can no longer raise a fork to your mouth and you have long since lost the ability to dress or shower yourself. You become more and more dependent on the people who love you or on professional carers. You can be woken by a stranger and minutes later be stripped naked by them and have them help you on the toilet. And it hurts. Sitting or lying in one position for hours at a time and then being hoisted can pull or tear those remaining muscles or stress unsupported joints. Your diaphragm fails. As your breathing is slowly compromised your lungs become less efficient at exchanging gasses. CO2 builds up and you feel sleepy and have headaches all the time. To counter this you begin using a ventilator, at first at night and then more and more during the day. You catch a cold but you can't cough the phlegm from your lungs. It feels as if you are drowning; you are prone to pneumonia. Your breathing affects your speech. Your days are spent in a wheelchair from which you have to dine, work, relax and travel. It's okay for all those purposes but perfect for none of them. As the muscles in your back weaken further your spine curves and your ability to balance deteriorates. Travelling becomes even more difficult and your world becomes a little smaller. And you never know which physical part of you will be shaved away next. You know it never gets better, only worse.

So, yes I'd like a cure. It's too late for me but for the generations behind me there is real hope. But research costs money, billions of dollars. Now where will we get that kind of money from?

Jerry Lewis was old fashioned when I was a child. I'm sure some of his attitudes are rooted in the age he was raised and may not be entirely politically correct by today's ever changing standards. (Apparently he thinks cricket is a 'fag's game'.) But, as Blake and Paula both beseech, look at what he has said about Muscular Dystrophy and disability in the context in which he was saying them. If you can't do that then you are being obtuse and picking a fight for all the wrong reasons.

Telethons are, by their very nature, uncomfortable to watch, especially if you are the focus of their worthy attention. To work they have to evoke pity for their subject or paint them as in some way inspirational (not a problem for me, obviously). But unless you can come up with a better way to raise the kind of money they raise then don't focus your attention on those who organise or front them but on the iniquities that make them necessary. I know it is simplistic to point out that if a fraction of the money and effort spent on military research was diverted to researching cures for conditions like MD then huge strides would be made almost instantly, but it is true.

So, to the earnest and angry young people at The Trouble With Jerry, stop picking on seemingly obvious targets like elderly comedians who have dedicated their lives to a cause, and start focusing on using your undoubted talents to make real changes to a world full of worthy targets. Anything less shows you to be petty, ungrateful and ignorant. The trouble is not with Jerry, it's with you.

A picture Paints

2009-02-25T06:46:00.000-08:00

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

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

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

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

The Rock God And Bassbin Cometh

2009-02-23T09:23:00.000-08:00

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

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

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

'Til next time, guys.

Hand Fed

2009-02-21T10:50:00.000-08:00

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

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

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

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

So, thanks Stewart.

A Rose By Any Other Name

2009-02-18T11:29:00.000-08:00

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

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

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

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

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

Wee Or Walk

2009-02-17T06:54:00.000-08:00

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

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

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

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

It Must Be Love

2009-02-15T05:38:00.000-08:00

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

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

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

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

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

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

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

Hot-Dog!

2009-02-13T06:45:00.000-08:00

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

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

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