A Day In The Life

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

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

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

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

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

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

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

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

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

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

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

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.