Friday, 30 January 2009

Sit Down And Stay Sick

Continuing on from the last two posts, Stand Up And Be Healed and Stand Up And Be Healed (Again), I'll be writing more about my experiences with so called spiritual healing and my resulting ambivalent feelings about the subject. So, if you can stand it, read on.

Some years after the Morris Cerullo incident I was writing material for the theatre company and was still being bombarded with literature from the man offering me access to books with titles like The Financial Breakthrough Bible, God's End-Time Protection Family Power Pact, Is It God's Will To Heal You Today?, Making Possible Your Impossibilities, Reaping Your End-Time Financial Harvest, and Send Me Your Money So You Won't Burn In Hell (okay I made the last one up but the others are genuine). If I made a small donation to his ministry Morris would often offer to send me an especially blessed piece of cloth which he had prayed over with my name and particular need in his heart. I was inspired to write a monologue for actor Kevin Daniel (now Alastair Kevin Daniel) based on Morris and other evangelists who were in the news at the time. Between us we created a character called the Reverend Doctor Duane Falcello (PLC), a charismatic specialist in Fiscal Theology. Much of the routine was lifted directly from the words of Morris and his ilk. Then as various scandals broke about other major American evangelists, I began to believe the subject was beyond satire.

Here's the script. Remember, I wrote this well over 20 years ago when Kevin was merely a child and I had a lot more hair, so be gentle in your criticism. I share it with you now so you get a sense of the ire Morris provoked in me.


[F.X. The worst chorus you can find (something terribly repetitive, stating something very bland about God, e.g. that He is good and nice, over and over again). Duane, a T.V. evangelist, enters. He picks up a microphone and smiles sincerely. F.X. fades. Duane speaks with a Bible belt American accent.]

I think we'd all like to thank the Cincinnati Salvation Singers for sharing that truly beautiful and memorable melody with us. I do swear that that song could have been composed by King David himself: "Lord, I ain't no descendent of no ape." How true.

Let us just bow our heads and pray that we shall be filled with the spirit that has made America great.

Brothers and Sisters, I am here tonight to ask you to look into the very depths you call your soul. And I want you to ask yourselves: Do I like what you see?

Think about your neighbour: What is he like? What kind of a suit is he wearing? What kind of a person is he? What kind of a human being? What kind of American?

Now I just want you to turn and look at your neighbour. Yes, just look to the person on your left - MADAM I SAID LOOK, DO NOT TOUCH... .WOULD YOU TOUCH THE HAND OF A SINNER? I want you to look at the person on your left. What do you see? Do you see a person who is saved? Or do you see a person who is condemned to the eternal stench of the brimstone fires of torment? Do you see one who is saved? Or do you see a sinner? A communist? A democrat?

Now just look to the person on your right and ask yourself the same thing... Now look to the person behind you... Look to the person in front of you... And look to the person 2 rows down and 5 along... Now look to the person in seat 36, row 15A - YES YOU MADAM - EVERYBODY LOOK AT HER!

Brothers and Sisters, you are looking at a man. A man who has looked into himself and found himself wanting. I found myself wanting a car, a dishwasher, and one of those dinky little doorbells that plays "The Stars And Stripes Forever". In short, good people, I wanted the things of this world, the sins of the flesh.

But now, Brothers and Sisters, I am here tonight to relieve you of your materialism. Look again into your soul. Is it corrupt, evil, a place of darkness that harbours abomination upon abomination? Does it fester with the pus of Satan's greed? Well relieve yourselves brothers and sisters! Squeeze and burst the boil of Beelzebub's hold over you.

Brothers and Sisters, it is my calling, my mission, to lead you along the paths to health and wealth and all the good things the Lord wants for you! Because the Lord doesn't want us to be poor, No Sir! If the Lord had wanted us to be poor would He have given me, his servant, a Cadillac, a swimming pool, and my very own Senator? I hardly think so.

Dear, dear people; do possessions drag you down? Are you weighed down by the love of money? Well I have the answer. Give it to the Lord!

Do you doubt? Do you doubt the Lord can use this poor humble vessel, such as I am, for this most trying of missions? Why only yesterday a poor woman, crippled by worries about money came to me. I prayed over her, and miraculously her tax returns were straightened out. And this happened before a gathering of nearly five hundred certified accountants.

You see, poor and humble as I am, the good Lord can speak through me... and as it happens I can hear Him speaking to me now... He is asking, no, He is pleading that you take that first step towards salvation. Take out your purse, take out your wallet and give it to the Lord. You cannot buy your way into heaven, my friends, but it surely can't hurt, because the Lord loves a happy giver.

“Duane”, I hear you cry. "Duane, how much should I give as my love offering?" Well, I do believe it is the will of the Lord that someone in this auditorium tonight should give not one, not two, not three, but five hundred American dollars.

But listen my children. I too feel led to give. I have here something very precious to me; my very own prayer handkerchief.

[Pulls out of his pocket a brightly spotted handkerchief.]

I have only a few of these specially blessed pieces of spiritual cloth. Only twenty two thousand of them. And I will GIVE them to anyone who gives to the cause of proclaiming God to the heathen Democrats of this fair land. Yes, if you will give unto the Lord a gift of only thirty American dollars, I will give you one of these blessed prayer aids. Please make your cheques payable to the Rev. Dr. Duane Falcello University of Fiscal Theology, PLC.

Good Night. God bless you. And God bless America.

[S.F.X. National Anthem. Duane salutes. Music and lights fade.]

Some years years later Morris Cerullo descended on London amidst a very controversial poster campaign featuring abandoned crutches, sticks and wheelchairs. I was determined to take Kevin to see the origins of Duane in the flesh and so he and I, accompanied by our friend Harvey, travelled to Earls Court to witness the spectacle. Nothing much had changed in the intervening years except, perhaps, the volume of the praise music and the charismatic hysteria surrounding the event. We went through a similar warm up praise session where lots of repetitive songs were sung that juxtaposed lines about 'flowing rivers' and 'eagles wings' with 'valleys', 'thrones on high' and 'eternal hope' in seemingly random combinations. The Spirit was called upon to move among us and encourage us to part with much of our worldly wealth by placing our credit card details into buckets passed along by teams of beaming stewards. Morris regaled us tearfully with a tale of his vision wherein he descended in to hell to witness the eternal suffering of the damned in torment. Fortunately Morris still had his steel toe-capped devil kicking footwear and was prepared to thwart the plans of the evil one on our behalf.

Eventually the healing ministry began. We were called to come forward if we were in need of spiritual, financial or physical healing. Many made their ways to the platform and all the while stewards circled looking for likely candidates. By this stage in my life I was in a manual wheelchair which I had placed between Kevin on one side and Harvey on the other. As people limped, staggered and wheeled forward l stayed with my brakes firmly on. A steward approached me but I refused to make eye contact. He asked Kevin if he would like to bring me to the front to be prayed over. “No thank you,” said Kevin politely. The steward tried Harvey. “He's happy where he is.” explained Harvey. This caused some consternation among the stewards and they gathered in a pack to encircle me. Kevin and Harvey stood with their hands on the wheelchair firmly blocking me in. For a moment I thought it would turn nasty as an increasingly heated argument ensued and Kevin and Harvey were told they were thwarting God's plan for me and condemning their poor crippled friend to a life of suffering. “We'll take that chance,” said Harvey, sweetly.

At last, and with much sadness at my intransigence in the face of Morris curing people left, right and centre of bad backs, shortened legs, hearing loss and financial insecurity, they left us to our Godless selves. Elsewhere in the congregation other more belligerent disabled protesters were being hauled away as quietly as possible out of the cavernous meeting hall. Meanwhile on stage people threw a way their blood pressure tablets and epilepsy medication in the sure knowledge of having been healed.

The three of us slipped away soon after. As we left we saw a BBC camera crew and Joan Bakewell interviewing an agitated man in a wheelchair who had been forcibly ejected from the meeting. Kevin said to me quietly, as we headed for the presumably much less needed Disabled parking area, “You could always give it a go if you want. It's not too late to go back in.” “No thanks,” I replied. “I'd rather take my chances with Duane.”

Tuesday, 27 January 2009

Stand Up And Be Healed (Again)

Well, I've obviously struck a nerve. The Stand Up And Be Healed post has had more than 3,200 hits in less than 24 hours. Presumably a lot of those visitors have been disappointed to find that the post was not prescriptive but rather humorously biographical in nature. Sorry.

So, continuing on the theme of spiritual healing, let me tell you the story of my first proper encounter with the phenomenon. In my late teens I went to see an American evangelist called Dr Morris Cerullo at the Colston Hall in Bristol. I had seen evangelists before, one of my best friends father was one after all, but nothing, nothing at all, had prepared me for Morris. The hall was packed to it's 2000 seat capacity. Thunderously loud praise music played and we were led in an hour of worship by skilled musicians and singers, fronted by a slickly professional master of ceremonies. The audience was whipped into a charismatic frenzy until finally Morris Cerullo himself came on to the stage. Morris shouted a series of apparently rhetorical questions. Did we LOVE God? Yes! Did God LOVE us? Yes! How much? Er... Quite a lot! How much? Lots and Lots! Being British it took Morris a while to wind us up to the state he wanted us in. Who is king? God Almighty! Who's his son? Jesus! What did Jesus do for us? He died for us! What did JESUS give to us? Eternal life! (We were getting the hang of this.) What did Jesus give for us? Everything! What did Jesus GIVE for us? Everything! WHAT did JESUS give for US? EVERYTHING! What must we give back to him? EVERYTHING! What MUST we give back to him? EVERYTHING!... Let us take up a collection. The stewards will pass among you with the collection buckets.

The Spirit of the Lord descended on Morris and told him that there were people in the congregation who were being led to give £100. . . No! £500. . . No'. . . £1000. Yes that was it. The Spirit was saying there were 3. . . 7. . . no. . . 11 people here today that the Lord was especially blessing by receiving their cheques (made out to Morris Cerullo Inc) for the holy sum of £1000. The buckets passed among us for the next 20 minutes until Morris was satisfied that we had expressed sufficient gratitude to God for his lowly servant.

Next came the address. We sat mesmerized as Morris regaled us with stories of how as a young Jewish boy he had been taken up and shown around heaven before being commissioned to go out and tell the world about Jesus. Morris was a man on a mission and that mission was to kick Satan's bottom. Satan, Morris told us was at the heart of the worlds woes. Only Satan had been defeated by Christ on the cross and now he was due a good kicking and Morris had his steel toe-capped devil kicking footwear on. Satan manifested his evil through sickness and disease – were we going to allow that? NO!

We were invited to stand and pray. Morris led us in a lengthy exhortation to God to bring about healing as a way of showing Satan who was boss. A great many hallelujahs later those of us with Satan inflicted infirmaries were invited to approach the stage. People flooded forward, limping and shuffling towards hope. Morris welcomed them all. He questioned them and prayed for them. “Do you want to be healed?” Amen! People were slain in the Spirit right, left and centre, being caught deftly by experienced helpers before they hit the floor. A tumor here, a migraine there. Shortened left legs, aching backs, partial sight, Satan was taking a beating. A few were lifted from their wheelchairs and were encouraged to dance across the stage in defiance of their arthritis. Praise the Lord. The one or two very obviously severely disabled people there never quite made it to the stage I noticed, but were taken aside and prayed for quietly in the corner, separately.

I was watching all this from a position high in the balcony. When Morris had asked us all to stand I had obeyed. But that was more than half an hour ago and my weakened back was aching and my legs were trembling with fatigue. I found myself caught on the horns of a dilemma; I was too self-conscious to show weakness and sit down and I was too tired and in pain to make my way all the way down to the stage to receive God's promised healing. I watched in two kinds of agony, spiritual and physical. Was this my chance? Was I missing out on something wonderful? l didn't know. As Morris spoke with silky sincerity into the microphone, his tone matched by an organ, rising and falling with his voice, I knew I'd missed out on whatever it was he was offering.

As we filed from the hall I felt strangely empty. For all the talk of the Spirit moving among us I had felt nothing except a lot of pain caused by standing so long. And looking around me I sensed I was not the only one who felt a little let down. Bemused looks almost rivaled ecstatic looks. Before I'd left I had filled in a little form, giving my address, so Morris could send me a free book so maybe I could learn more from his written word.

For years to come I received regular letters from Dr Morris Cerullo, endlessly offering me various paths to salvation and books promising biblically assured financial security. If I had faith enough to make a small donation to God's work I was promised abundant living and a 'free' set of Morris's latest tapes, books or especially blessed pieces of cloth.

To be continued...

Monday, 26 January 2009

Stand Up And Be Healed

One of the consequences of me moaning on about how much discomfort I'm in is a huge rise in the number of people offering to pray for me. The good Lord has probably become aware of an increase in the volume of prayers badgering him to do something about my condition, exhorting him to bring about some kind of healing in the hope that I'll stop whining and start writing something funny again. The sheer number of people offering to intercede on my behalf is both humbling and bewildering. Warming because of the number and variety of people who have made this kind offer, from close friends who have known me for decades to people who know me only from reading this blog. Bewildering because... well, we'll come to that.

God and I have a history. You will have gathered that if you have read some of my previous posts. The matter of healing has been a recurrent theme in our dealings with each other, sometimes leading to a degree of embarrassment, possibly on both our parts. I'll give you a for instance or two.

I was once participating in a Methodist meeting at a huge hall in Cornwall. The place was packed with hundreds of people who had come to hear Rob Frost speak and Polly and others perform some comedy sketches. I was at the front of the hall and had addressed the crowd as a kind of warm up act and was followed by a time of worship, where hymns and praise songs were sung. It was all very jolly and with my bit over I was feeling quite relaxed, allowing my mind to drift off to wherever my mind wanders off to on such occasions. I was bought up short when a lady in the balcony, shouting out between songs, declared that she had a message from the Lord. The man leading the event, a minister called Steve, glanced anxiously around but the lady remained standing, arms raised in a charismatic manner, and declaimed loudly for all to hear, that the message was for the young man in the wheelchair. Six hundred pairs of eyes turned to fix on me, all safe in the knowledge that it was nothing to do with them, and intrigued to hear what the Almighty had in store for the only person in the hall in a wheelchair, me. Satisfied she had everyone's attention the lady continued, speaking in that peculiar 'God-speak' such people use when they purport to be receiving dictation from the Lord. I'm giving you the gist here, but it went along the lines of

The Lord God sayeth, blessed are his people who drinketh from the fresh spring of righteousness. The valley shall be raised and the mountain smote low by the mighty hand of Jehovah and the holy woodpecker of faith.

She continued in this pseudo-King James bible language for a while, before getting to the nitty-gritty.

The Lord your God sayeth that the blind shall see and the lame shall walk. He beseecheth ye that they who have faith and believeth in the Son of Man shall dance and leap for joy. Step forth and rise up in the name of his holy name, so commandeth the God of Abraham.

Uh-ho thinks I. Would now be a good tine to mention that even in the best of times I'm not your dancing and leaping for joy type? With every eye fixed on me, I adopted what I hoped was a look of spiritual contemplation and prayerful consideration. Everyone watched me in breathless anticipation. Were they about to witness a miracle of biblical stature? As I reddened with embarrassment I swear I was tempted to try to rise from my wheelchair and then fall forward, flat on my face, and say loudly, “so, the message wasn't for me then. Damn.”

I will forever be grateful to Steve for moving the meeting on before my embarrassment became terminal.

On another occasion I was visiting a well known evangelical church in London called Kensington Temple. Just before the service began a group of people approached me and before I knew it had encircled me and were 'laying hands' on me. Several of them started to pray in tongues and became increasingly ecstatic. One of the group placed his hand on my head and exhorted me to “Stand up in the name of Jesus.” When I failed to do so he became quite agitated. “Rise up in the name of Jee-sus!” he demanded. I shrugged apologetically, sorry to disappoint him. Suddenly the atmosphere changed. “If you truly believe you will be healed.” Nothing happened. The group backed away from me. Someone looked at me disapprovingly and said, “you have to want to be healed.” The group wandered away from me muttering sadly at my lack of faith. Suffice to say I didn't much enjoy the sermon that followed on the theme of miracles.

So, does this mean I don't want people to pray for me? Not at all. I genuinely appreciate the sentiment. I simply reserve the right not to be healed on demand. It's not my fault, nor yours, if God withholds his healing spirit from me. But that makes God sound rather petty doesn't it. Perhaps it's a bit more complicated than that. I'll regale you with my theological theory another time. In the meantime, thank you for your concern and your support. Just go easy with the laying on of hands stuff.

Sunday, 25 January 2009

Hot Coals And Needles

I may have a problem posting over the next few days. My left shoulder is on fire, burning as if a hot coal has been pushed into the socket. Meanwhile my right knee has equally hot needles inserted under the kneecap. I'm not sure what I've done but I wish hadn't done it.

Sober analysis of the situation causes me to accept that I have probably damaged the shoulder trying to persuade my weakened left arm to behave normally. Just now I can't even lift a sandwich from a plate to my mouth, even with cunning use of balance and leverage of the wrist and elbow. My knee seems to be twisting during hoisted transfers, particularly in and out of bed. The resulting injuries are relatively minor but are exacerbated by constant repetition. I can't not eat and I have to get in and out of bed. It's all a little wearing.

Now, exactly how much Morphine Sulphate is it safe to take?

Thursday, 22 January 2009

My Left Arm

I'm sat here at the table wondering what to write. It's a dull, damp January day and it looks as though the sky has been sealed with a Tupperware lid and the south of England has been put in the fridge. It's cold but not freezing. Writing today is difficult. My left arm, the one attached to the hand that wields the stylus with which I write, is becoming increasingly weaker. Finding the exact position to place my elbow and wrist for the most effective leverage and fine motor control needed for manipulating the stylus is frustrating. But writing is nothing compared to the problems I'm having with eating.

There is food on the plate. The problem is getting it in to my mouth.

There is something horribly humiliating about not being able to feed yourself. I can manage certain types of food for a short while, until my arm tires too much. My right arm can take over briefly, but I am left-handed and my right arm has never been as strong as my left. The food simply tips from the fork before it reaches my mouth. Polly has had to help me in recent weeks, literally spoon feeding me all or part of my meal. She does this with typical good humour and grace but it is not a long term solution. The Occupational Therapist (O.T.) has suggested a Heath-Robinson type device that fits to the table called a Neater Eater, but frankly I'd rather starve. I think the solution, at least in part, lies with finding the right kind of cutlery, and so I am currently seeking a place to try out a range of knives and particularly forks in the hope of finding the exact right ones. How hard can that be?

The biggest challenge presented to Polly and myself in the face of my changing condition is normalising it for the children. We try to minimise any anxiety or frustration we may be feeling but it is impossible to hide such an obvious deterioration from them, and nor would we wish too. But we really don't want them worrying, they have enough on their plates. Matty is currently learning his lines to play Henry VIII in a play to be performed next month. I don't want their childhood blighted by anxiety about me. It is a tricky balancing act, being open and straightforward about how things are, and not giving them cause for undue concern.

Meanwhile, life goes on. The van has been repaired after its run in with someone's tow bar. The wheelchair ramp had been damaged badly and you can't weld aluminium. Fortunately the ingenious body shop man found away of bolting things back together. Also, Godfrey, my regular carer, is back after a period of sick leave. A new era with a degree of consistent homecare has begun.

And finally, for some reason Sam was saying the Lord's Prayer last night. Apparently it begins

Our Father, who aren't in heaven
Hello be your name.

Now, what's for tea? Soup served in a colander and eaten with a fork with any luck.

Tuesday, 20 January 2009

A Giant Leap For Mankind?

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

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

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

Monday, 19 January 2009

A Tale Of Theft And Criminal Damage

I don't know, what is the world coming to? Theft and criminal damage visited upon children and the disabled. No, don't worry, you haven't accidentally happened on the Daily Mail website, it's still me. It's been a miserable few days thanks to a couple of miserable events. Polly and Sam's godmother, the lovely Stacey, took the boys to the park the other day. The boys rode their Flashing Storm scooters as they often do and left them as usual against the fence. It was cold and starting to get dark so they didn't play for long. Just a quick nip up the climbing wall and a whiz round on the round-about and back home. Only when they went to collect the scooters, as they have a thousand times before, they were gone. Stolen, nicked, made off with. Some heartless bastard had scooted off with my boys precious wheels.

The boys were devastated, particularly Matty, and felt suddenly vulnerable in a place they had previously felt safe in. Sam was more put out by the fact that he would now have to walk home. I suppose it would be unchristian of me to hope the wheels fall off and a trip to casualty ensues.

Then, on Saturday, Polly was working in Wimbledon and was parked on the street. When she returned from entertaining a pack of little darlings to load her equipment back into the van she found that some numpty had driven into the back of it with one of those metal tow bar fixtures you attach caravans or trailers to. The resulting damage means that the ramp no longer works and I can't use our van any more. We will have to take it to a body repair shop and have bits welded back together at vast expense and inconvenience. Thank you whoever you are. I hope the lump of metal on the back of your vehicle did not suffer too much damage.

So, if anyone offers you some cheap children's scooters, let me know. And if their car has a slightly damaged tow bar with flecks of white paint on it, do me a favour and let their tyres down.

On a completely different and happier note I would like to congratulate my friend Alistair Kevin Daniel on the confirmation of his doctorate. I'm still not exactly sure what semiotics is, but it's good to know they are in such safe hands. I'm very proud of you Dr Daniel, well done. If ever there was a man born to wear scarlet medieval robes, it was you.

Friday, 16 January 2009

It's A Bugs Life

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

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

Thursday, 15 January 2009

January Blues

I'm aware that this blog has become a bit moany of late what with all the hassles around the homecare. I don't want to give you the impression that my life is purely a string of niggles and arguments. Except that at the moment it is. A big part of the problem is that it is January. January and February are pants. Here in the UK they are cold, grey months, often rainy or icy, that make going out difficult because you need lots of layers. Lots of layers means lots of effort. A few days ago I went shopping with Polly and the boys. The temperature was just below freezing and I wore a T-shirt, a jumper, a fleece and a winter coat. Plus a woolly hat and a scarf. I was quite warm but I couldn't actually bend my arms.

Since muscles are the main source of heat production and maintenance of body temperature the severe muscle wasting in neuromuscular conditions, coupled with the inevitable reduction or lack of mobility, means that people with MD feel the cold. It always feels several degrees colder to me than to those around me. As a result our home heating bills resemble those of farmers growing tropical fruit in mid-winter and those visiting our flat are met with a wall of heat. Even carers from Nigeria tend to take off their jackets when they come to us.

I hate being cold. My body shuts down and I find it hard to think. Once my core body temperature drops below a certain point it seems to take forever to get warm again.

Once, a long time ago, I was working at a conference held in some Scottish castle near Glasgow. My friend and colleague Kevin and I were billeted in an annex along side the main grand building in a room with glass missing from several fanlights. It was early summer, but this was Scotland, and as night fell so did the temperature. It is an enduring memory of mine, sitting huddled up, warming myself by the one source of heat that we had between us, Kevin's tiny travel iron. Kevin kindly turned it up fill blast and placed in on a low table next to my wheelchair and by its feeble heat I fended off hypothermia.

I've just seen the weather forecast for the weekend; rain and sleet. Great. Wake me in the spring.

Tuesday, 13 January 2009

Caught In The Middle

Polly has just read the homecare agency the riot act. Not for any one particular reason, but rather for the accumulative drip drip drip of minor (and occasional major) misdemeanours. This mornings it was arriving an hour late without notifying us of the delay. Others include not writing in the homecare record book, expecting time sheets to be signed with out the times filled in, and general lack of training.

The relationship between the disabled client and their carers is, as you might imagine, complex. I rely on my team for a series of highly personal tasks, from dressing, washing and going to the toilet, to fitting the ventilator mask at night and charging the wheelchair battery. You want to be friendly but not necessarily friends. You want carers to be efficient and aware of what needs doing but you don't want to take them for granted. When there are problems you need a straight forward way of dealing with them. Often it is not the individual carer who is at fault but rather the support they are getting from their employers. (For example, if a carer is running late it is the responsibility of the office to keep us informed.) When things are going well the quality of life for the client is enhanced. When they aren't the quality of life is eroded, making a difficult situation unbearable.

The agency who employ the carers I use only pay the carers for the hours they work. They get no sick pay, so they will often struggle into work when they are unwell. This is bad for them and positively dangerous for me if they are working with an infectious cold. I have known carers to work morning and night, every single day, week after week, for months on end, reluctant to take a day off because they simply can not afford too. Inevitably many of them crash and burn.

I'd be interested to know the exact employment status of the individual carer. Are they employees? Self-employed? Indentured slaves? Councils employ homecare agencies to fulfil their statutory obligation to provide the service because agencies are cheaper than providing an in-house service. It seems to me that councils turn a blind eye to the exact reasons how and why agencies provide a cheaper service.

And caught in the middle of this exhausting and sometimes exploitative situation are people like myself.

Every night I wear a nasal mask attached to a ventilator. The mask is held In place by a web of straps that can be adjusted to hold the mask at the right tension and in the right position to make a pressurised seal. Over recent nights something has been going wrong. I'm tired and needing the ventilator and perhaps settling for things being done too quickly. The language requirements needed to explain the very slight adjustments required for a perfect fit are beyond me when I am tired and English is often the carer's 3rd or 4th language. The result has been a slightly ill-fitting mask which has made slight abrasions to the inside is my nostrils and the straps have cut into the skin above my ears. I've woken perhaps a dozen times in the night by the pain and tried to make adjustments myself, but have been thwarted by my dodgy left arm. This morning Joyce, one of the carers, observed me and said disapprovingly, “there is blood.” Tonight I will be even more tired.

In many ways I am fortunate. I can articulate my grievances and worries. I have Polly to advocate on my behalf. But I worry for the countless vulnerable people who receive a service that is being parred to the bone and who can not moan and kick up a fuss. I bet their nostrils hurt like hell.

Monday, 12 January 2009

The Spin Cycle Of Life

As we slip 2009 comfortably on like a new favourite sweater and sniff it under the armpits to see if it needs a run through life's washing machine, I am left wondering what this year is going to bring. 2008 was a year of highs and lows. Polly running the marathon and in the process raising more than £5,500 for Muscular Dystrophy Campaign was a real high, as was her fabulous Indian themed, elephant endowed 40th birthday party. I have delighted in this blogging business, making new friends and finding an outlet for what passes for humour and storytelling. Getting back to writing on a regular basis has been for me a real boon. Sam starting school and watching Matty blossom this academic year, Polly getting her Clown Doctor job, have all been good.

The lows, of course, include the death of Polly's father, the gentle spirit that was John Burn back in June, and the horror of the Chicken Pox outbreak the boys endured in April where Matty even had spots on his eyeball. The ongoing and never ending saga of sorting out the homecare has been an enduring source of exhaustion and occasional ill-temper which, if you have been reading this blog for any length of time, you will be well aware of.

The hardest part of 2008 has for me been the deterioration in the FSH Muscular Dystrophy. My left arm, in particular, has suffered a progressive weakening which has been inconvenient to say the least, especially because I am left handed. It has made sleeping harder because if it slips out of position during the night I awake to find it either completely numb or burning with a kind of high temperature pins and needles which I either have to endure or wake Polly to move it for me. As a kind of cruel balance, my right leg seems to have taken a fondness to cramping, possibly because it bares the brunt of any imbalance that occurs during hoisting, another fun thing that was introduced in '08. On the plus side, I've managed to negotiate around the flu epidemic that so many have been smitten with, including ironically, my GP who organised for me to have the flu vaccine.

So, what of 2009? If we can take it as read that I'd like a peaceful solution to the situation in Gaza, an end to global warning, health and happiness for my family, relief from the credit crunch and the instant imprisonment of people who spit chewing gum on to the pavement; what would I hope for this year? Well...

I'd like homecare to sort itself out and provide competent, trained carers who are not overworked and exploited. I'd like a long warm summer with plenty of sunshine. I'd like a respite from various aches, pains and the minor irritants of disability. And I'd quite like for more people to read this blog. So please spread the word, leave comments and join with me to make 2009 the year that immediately precedes 2010. Thank you for your continued support and friendship.

Saturday, 10 January 2009

Don't Swear At The Carers

I shouted at my carers last night. I'm not at all proud of this but all I can say in mitigation was that I was in pain, finding it difficult to breathe and that we were doing nothing that we don't do every night. So why we were in such a mess? I don't know.

As has been mentioned on countless occasions in this blog already, I use a BiPap ventilator at night. Effectively what this bit of kit does is ensure I take deep enough breaths all night to expel the build up of CO2. The BiPap pumps air, under pressure, via a hose to a nasal mask that is strapped to my face. Every night we fit the mask. Every bloody night I explain which way up it goes. Last night, one of the carers, let's call her Woburn to spare her blushes, not only failed to fit the mask, but in her panic managed to break it in to it's component pieces even as it was being painfully yanked about my face.

At this point I must explain that I have an irrational fear of anything that obstructs my breathing. Months spent in Intensive Care on ventilation have left me highly aware of just how fragile my respiratory system is. The rational part of me knows that I will not suffocate if carers mess around with my mask, but several close shaves in the past means that the irrational part of me kicks in and I find it massively stressful. Woburn has fitted the mask on many occasions over the last six weeks or so, but every night it's as if it's the very first time she has ever seen the damn thing. Last night, as the mask disintegrated in her hands, I freaked out and told everyone to f**k off.

Inevitably Polly was called to sort it out. The poor girl has been working incredibly long hours doing her Clown Doctor training this week but yet again she had to step in and do the care teams job.

It says a lot about how I feel about the situation that I am actually relieved that Carlotta is back tonight. She may be a bit loopy and prone to attempting to heal me using psychic energy, but at least she is reasonably competent and is really trying to be a good carer.

Wednesday, 7 January 2009

Why You Should Listen Carefully To Your Children

The other day, as Sam was about to go into the shower, he called out to Polly and asked “Mummy, please can I play with the foam in the shower?” There was a plastic bottle of shower foam he liked to play with, making foam bunnies and other foam based fauna. He had to ask before using it because previous occasions had resulted in the bathroom ending up knee deep in bubbles and the bottle emptied in a single session. Polly told him to go ahead and have fun and thanked him for asking so nicely.

Sometime later Polly went into the bathroom expecting foam bunny carnage but found it spotless. Sam was sat under the shower playing with something intently. “What have you got there, darling?” she asked. Sam, grinning happily, held up Polly's mobile phone. “Sam!” she exclaimed. “What are you doing?” Sam looked up shocked and burst in to tears. “But Mummy,” he wailed. “I asked very nicely if I could.” Polly, wrong footed for a moment, paused. Foam? Phone?

Polly looked at the now water-logged communications device and forced a smile. “Yes darling, you asked very nicely. Would you like to get dry now?”

“No thank you. I haven't finished playing my game yet. Can I play with some foam now?”

Tuesday, 6 January 2009

The Healing Power Of Homecare

One of the best things about writing a blog is that when strange or exasperating things happen to you you at least have the compensation of thinking that it will make for an interesting post. I've been thinking this a lot recently.

With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.

Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.

Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.

Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.

Thank you for reading.

P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.

Saturday, 3 January 2009

Polly Come Quick - It Broke

Cast your mind back all the way to new years eve. As the country prepared to party and light overly loud fireworks Polly and I, exhausted from and at the whim of a week of temporary carers, prepared for a reasonably early night. Carlotta and Abby arrived and got in each others way but somehow got me ready for bed. But then the familiar cry went out, “Polly, Polly, quick. Come!”

The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.

Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”

The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.

Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.

One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'

Thursday, 1 January 2009

It's Lovely - Did You Keep The Receipt?

Happy New Year.

It's been a long week. Christmas day seems a long time ago now. And the dust has finally settled. In my defence I would like to say that I have a pretty good record of present giving. In the last few months we've had a 15th wedding anniversary (perfume) and a 40th birthday (artwork) and now Christmas. I gave Polly some magic tricks that she wanted for her clown doctoring and the latest book in the No. 1 Ladies' Detective Agency series that she loves. I also gave her a Tefal ActiFry Low Fat Electric Fryer. She took one look at it and said, “Oh lovely, a chip pan.” There was a pause while icicles formed before she asked, “did you keep the receipt?” Apparently what I really meant to give her was some rather expensive face cream.

We spent Christmas day at my brother Simon's house where the Deal clan had gathered. My sister-in-law Jaspreet had prepared a fabulous dinner of which the centre piece was a 5 bird roast which as best I can work out consisted of a fresh Turkey breast, stuffed with Chicken, stuffed with Duck, stuffed with Guinea Fowl, stuffed with Wood Pigeon. The boys were in ecstasy having received from overly indulgent relatives various electronic games machines including a Wii Fit, Nintendo DS's and joy of joys, a Playstation 3. Even as I write Matty is busy playing with. . . some Lego. (Some toys are timeless.)

Polly gave me a beautiful print by a local artist of Carshalton pond and a Bill Bailey DVD. Among other wonderful and generous gifts, I received from my sister Helena and brother-in-law Andrew a gadget designed especially with me in mind, a Sony Reader. I now can carry an entire library with me at all times. I find I can read much faster when I don't have to fiddle with turning pages. Wonderful.

Boxing day was delightfully quiet but of course not everything has gone smoothly. Kalapo, one of my regular carers has gone home to Nigeria for Christmas and Godfrey, the other regular, has been very unwell. As I result I've been left with two sweet, but rather scatty women, neither of whom have a full grasp of English (or indeed caring). The week has been full of perilously dangerous transfers and shrieks of “Polly, Polly, come help. Quick!” I've run out of ways to explain how to fit the foot-plates to the wheelchair and I've been too scared to have a shower all week. Carlotta saying “I'm sorry, I'm sorry, I'm sorry, I'm sorry, I'm sorry,” is no compensation for a broken leg.

Today, New Years day, we forsook the carers and Polly got me up and gave me a much needed shower in half the time that the women take to give me a wash. So I've started 2009 all clean and shiny. My new years resolution is to only buy Polly presents that don't cook food.