Love And Biscuits

One more story about the early days of my relationship with my mother-in-law, Pam. In the run up to the wedding Polly was busy converting my flat into our home. She was treading the fine line between respecting my tastes and possessions and despairing of my tastes and possessions. We eventually compromised, in that I surrendered completely with one proviso, that we keep my books. I had hundreds and hundreds of books. One wall in the living room was lined floor to ceiling with shelves, double stacked and there were two more bookcases in the corner. In the bedroom, in an alcove were another two long shelves and there was a bookcase in the hallway. Yes, I know, all very geeky, but there you go. I'd love to be able to say that all of them were philosophical treatise and books by Russian authors exploring the nature of humanity and suffering. Truth be told, there were a fair number of John Grisham and Terry Pratchett.

Pam came to visit and assess her daughters prospective domiciliary arrangements. Her eyes brightened when she saw the books. “Oh lovely,” she said. “The church is having jumble sale. There's bound to be a bookstall.” I don't think she heard my whimper.

A. few minutes later she and Polly were surveying the bedroom so that Polly could seek her advice on the best place to position the double bed we intended to purchase. Pam looked thoughtful for a few moments and then said, perfectly seriously, ”the room's quite small. Have you thought about bunk beds?” Polly had to help me clean up the mouthful of coffee I had sprayed across the living room.

Today, as Pam came over to help look after her grandchildren while Polly was at work, and amidst the frequent offers to make coffee and whilst declining the full English breakfast she wanted to cook for me, I felt a wave of affection for this wonderful and generous woman who has so completely taken me into her life and filled it with love and biscuits.

Food For Thought

Pam, my mother-in-law popped round today, laden with food as usual. When Polly and I first got together she was not best pleased. Her darling youngest daughter had been away for a year in Romania looking after the babies with no mummies and daddies and now she was back and everything was going to go back to how it had been before she left. Paula had recently married and moved to Ramsgate and Irene was in Texas. Polly was going to move back in to the family home, go back to nursery nursing and that would be that. Unfortunately she hadn't taken me in to account.

The first time I met Pam was when I brought Polly home from the airport. A friend and I had picked her up from Stanstead Airport. It had been the first time we had laid eyes on each other since the phone call in February (see A Fine Romance (Part 2)). The meeting with Pam was brief but cordial. Polly was hustled in side and Pam thanked me politely. It was all a bit anti-climatic after all the anticipation.

A few hours later Polly was standing on my doorstep and grinning from ear to ear. From then on we spent as much time together as possible. And the more time we spent together the less pleased Pam was. Pam's displeasure caused Polly a great deal of distress. She and her mother had always been very close and the tension was hurting both of them. When I proposed to Polly a few weeks later matters came to a head. The situation became intolerable with Polly torn between her family and her fiancé. I recognised that Pam had legitimate concerns. She didn't know me, she'd only briefly met a guy in a wheelchair who had snared her daughter, of course she was worried. She also felt she was going to lose Polly if we moved away like Paula and Irene. So, one evening I settled down to write one of the most important things I've ever written, a letter to Pam.

I can't remember exactly what I wrote but I do know that I assured her that no one would ever love Polly as much as I did. I sent the letter and that was it. It was as if a switch had been thrown. Pam's acceptance was total. I was family. Pam is of a generation and background that doesn't express love with hugs and words. She uses food. The first meal she ever cooked me was steak and chips, mushrooms, tomatoes and onion rings. British readers will know what I mean when I say that the plate was piled high like an illustration from the Beano or Dandy. It was the kind of meal Desperate Dan would tuck in to. It was enormous. And I, wary or my new welcome status, felt obliged to eat it all. My stomach tighter than a drum, I forced the last chip down to Pam's obvious delight. She immediately bustled out to the kitchen to prepare a second serving. I silently pleaded with Polly to intercede and then heard her assuring Pam that a second steak would only spoil me. Pam was only mollified when she was able to present me with a vast meringue and ice cream confection..

Throughout the years of my marriage Pam has rarely arrived to visit with out a bag full of cakes, biscuits and chocolate. If I ate everything she brought for me I would be the type or person who needs a fire crew and team of engineers to get out of the house. Polly assures me that if she stops bringing. food she will have stopped loving me. So far there's no sign of me going hungry.

It's Not Just me Then

It's not just me! Sometimes it feels as if the whole 'system' is out to get me but it's not – it's out to get loads of people. I've been listening to BBC Radio 4's You and Yours. There was an article about the consequences of councils farming out home care to agencies across the land. It's going just as well as you'd expect. ¾ of all home care in England is now in the hands of private companies and 1/3 in Scotland. Across the UK approximately 750,000 disabled and elderly people use home care services. The programme concentrated on the situation in Scotland but I think it's fair to say that it reflected what is happening across the whole of our green and pleasant land.

We met elderly people for whom home care was the only human contact they had from day to day, but were victims of a practice called 'cramming` by which care workers cut the length of a call that has been allocated as half an hour to a mere 10 minutes so that more clients can be fitted in to a shift. The carers don't do this for their own benefit because they get paid a flat rate per hour but because the company demands it. The company gets paid by the local authority per client. One former agency office manager told how she was ordered to accept any client the council asked them to take on regardless of whether they had enough staff to handle them. 'Cramming' not only deprives the client of human contact, it also means that the care plan, carefully worked out by a slew of social workers, occupational therapists and manual handling experts goes out the window. A carer told how when one of her clients was sick she wanted to wait with her for a doctor but was told she had to move on.

Another practice is cutting a 'cut`. A cut is when a client is allocated, say, one hour that is divided in to two calls. A tea time call and a 'tuck in' or bedtime call, for example. The carer only does the first call, so the client is rushed through tea and changed in to night ware, and then left to fend for themselves. The poor person is therefore stuck in their pyjamas from four o' clock in the afternoon. Oh, and you can bet the agency charges for the full hour.

As many as a third of carers have left the business in recent years. They can earn more money stacking shelves in supermarkets. And the situation isn't helped by the fact that council care workers earn two or three pounds an hour more than agency staff. Which is, of course, why councils are so keen to hand over responsibility for home care to agencies in the first place.

YANUB left a comment to my last post. It reads -

I just don't understand the logic behind removing someone's well-trained carers, people who have not only grown through the years in their knowledge of how to do their specific job for you, but also have learned how to communicate with you and enjoy doing so, and replacing them with green help. And as foolish as that is, to do it to someone like you, who has increasingly exact needs, is just plain callous. No insult to your new staff, who are doing their best, but one doesn't start the open heart surgery and halfway through, send the lead surgeon home to be replaced by med students. Sometimes what counts is experience.

It's no wonder you are tired. There should be a campaign against this sort of thing, this depersonalization of human needs, this treating people as if they were interchangable.

Well said. One of the things that galled me most was the way in which the agencies won their contracts. An e-auction was held. Ebay in reverse, the lowest bidder wins. This may be an appropriate way of awarding tenders for office supplies or maybe catering contracts, but we are talking about personal care; giving people baths, cleaning up wet beds, helping people dress. Surely you don't want the cheapest option Mr or Ms Councilor? Or maybe you do, but I wonder how quickly you'll change your mind when you're in your 80`s and trying to live independently.

Tired

I am so tired. Not very exciting I know, but true nonetheless. The new carer saga is taking its toll. Kalepo and co are lovely people but they are not the experienced carers we were promised and are therefore learning the job on the job, so to speak. The trouble is I don't have the energy to be a training aide. They are getting quicker and better but we are nearly a month in to the handover and I am afraid I lack the confidence that should a crisis occur they would know how to handle it. Although the Muscular Dystrophy has been deteriorating recently my general health has been pretty good but I'm near my coping limit regarding the home care provision. When I wake in the morning a night on the ventilator means my mouth is very dry and talking is next to impossible; issuing instructions such as, “Move my head forward and my shoulder back” and “straighten my left leg and then tilt the bed slightly,” become a challenge only slightly less daunting than a tongue-twister competition. Now throw in the added complication that English is not even Kalepo's second language but his third (after German) and the potential for miscommunication becomes significant. If I become ill, with even a minor ailment such as a cold, my clarity of speech first thing in the morning becomes even harder to understand than a premier league footballer after a night on the town. Interpreting my mumblings into a comprehensible form requires the equivalent linguistic ability of Thomas Young translating the Rosetta Stone. My worry is that if something serious is wrong inexperienced carers won't recognise it, let alone know what to do.

It has been said that any carers coming in to me will have to learn what to do, which is true. But there is a difference between learning how to cope with my specific needs and learning the basic skills such as manual handling and using a hoist. So now I feel guilty for having expressed my concerns officially. I'd hate Kalepo and the others to think I don't trust them – I do. Just not with my life.

Press The Red Button

I now have a new definition of frustration. No, nothing to do with carers, wheelchairs, or social services, this is to do with my mother-in-law, Pam. Firstly let me make it perfectly clear that I love her dearly. She is kind and generous and loving towards me, and she really is like a second mum to me. This is not an anti mother-in-law rant. Okay? But...

In the light of recent events Pam has wisely decided to buy a mobile phone. She had one before but only John knew how to work it and he forgot. Besides it's so old by today's standards that it may as well have a dial. As a dutiful son-in-law it fell to me to order one for her. “I don't want anything fancy,” she said. “I don't need a camera or a built in teleprinter thingy.” “.Teleprinter?” “Yes, I can't be doing with all that button pushing.” “Button pushing?” I turned to Polly for help. “She doesn't want to text,” she explained. I ordered the most basic, simplest phone on the market, the Nokia for Grannies 001.

It arrived and I unpacked it and installed the Sim card and battery. When the phone was fully charged I loaded in all the numbers she will need, set the time and date, and put some credit on it. All Pam had to do was make a call on it. Simple.

“You press this button to scroll down the list of names.” “Right. Which button?” “The big one:” “Okay... it's gone blank.” “That's because you've turned it off.” “Oh, so which button is it?” “The BIG one.” “Right, I understand. It says 'options'.” “Press 'down' not left or right.” “Oh, I see... No. It's playing Space Invaders.” “Press the Red button so we can start again. “The Red button? This one?” “Is it Red?” “Yes.” “Then that's the one.” “I was just making sure. There, I've pressed it.” “Okay, now press down.” “Why is it making that noise?` “You're phoning someone.” “Am I? Who? Oh hello. . . Sorry I don't understand you. Do you speak English?” “'I think you're talking to someone in Bhutan. You need to hang up.” “Which button is that?” “The RED one.”

Many, many minutes later. . .

“So if I want to ring Paula I have to...” “Scroll down until her name is highlighted in red.” “I see.” “Have you done that?” “Yes.” “Now press the green button.” “Right.” “Is it ringing?” “No.”

Many more minutes later. . .

“Hello, hello? Is that you Paula? No, I'm sorry. What language do they speak in Bhutan?” “Press the RED button..” “Which one is that?” “The one coloured RED!” “Polly!” Enter Polly. “He's shouting at me, Polly.”

A fraught argument through clenched teeth later. . .

“I wanted a simple phone.” “If it were any more simple it would be two tin cans and a length string.”

Eventually Pam made a successful phone call to my sister-in-law, Paula. I showed her how to find out what the credit balance is. And forty five minutes later she found out what is was. As she was getting her things together to go home she said innocently, “I was thinking about getting a computer so I can keep in touch with Irene in Texas using that email.” “Oh dear,” I said quickly.” I don't think they have the internet in America.”

It's For You

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

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

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

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

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

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

Getting (A Little) Better

There is a light at the end of the tunnel. It is dim and a long way off but it is there. After last weeks debacle things are a little better carer-wise. Following a 'more in anger than in sorrow' type phone call to the social services home care office some changes have been made. Jerry has been kept on for another week to oversee things, Shy Girl has been quietly removed and has been replaced by Alison who is in a different league. Kalepo (not spelt with a C) remains and grows in confidence with each passing day and Christian is coming when ever he is available. Even Cant Do has made an encore although we are yet to see if Sinatra like she will keep on returning.

Don't let me give you the impression that our home is a sunshine filled valley of happy bunnies just yet. Yesterday, for example, as Polly was preparing for her father's funeral, setting out a buffet for after the service, one of the new carers (Can't Do as it happens) didn't arrive. Jerry who was only here to supervise stepped in to help Kalepo but it was something we could have done with out on such a stressful day. It turned out that a fire at a major local junction had caused traffic chaos for miles around. However Can't Do had notified her office of the situation more than an hour before she eventually got to us, but did they pass the information on? Answers on a postcard please.

You may remember that I was having problems with my wheelchair footplates and that they were causing a right pain in my left foot. The wheelchair service is looking for suitable replacements but in the meantime Polly has gaffer-taped a bright yellow car-cleaning sponge to my left footplate. In addition, to support the small of my back, I've started to use a bright red cushion. So my sleek, black and grey, high-tech wheelchair is beginning to look decidedly technicolour. I'm so cool.

The Final Curtain Mechanism

It was John's funeral today, a bright, sunny June afternoon. A small group of immediate family gathered to say farewell to a husband, father and grandfather. Polly read the reading, I read the eulogy and the vicar said vicary things. As the curtains closed around the coffin both Polly and I thought, John would have really liked those. Very smooth. He would have had a quick peek at the mechanism and maybe fiddled with a screwdriver. It's funny what goes through your mind at times like these.

A Happy Day

We went to a wedding yesterday. Andy and Jo, I doubt you are reading this because you have other things on your minds, but congratulations and. thanks for a lovely day. Andy is the eldest son of my friend, the late Rob Frost., and so there were more preachers, ministers and pastors than you could shake a stick at. Rob, who died of Cancer late last year, was a minister, evangelist, radio and TV presenter, writer of countless books and articles, producer, entrepreneur, novelist and doctor of theology. I worked with him over a period of more than 20 years and we travelled tens of thousands of miles together. He wasn't concerned about my disability, only my ability to deliver the written material he commissioned and keep some kind of control of the theatre company I ran. His death has left a void in many lives. So to see Andy (who in my mind is permanently aged 13 and in to World Wrestling Federation and therefore far to young to be getting married) marrying Jo was a wonderful and uplifting occasion.

The wedding was not a traditional affair. The bride and groom entered and walked down the aisle together to some kind of pop song I didn't recognise, the pastor, groom, bride, and mother of the groom all gave talks, and during the prayers the happy couple were literally uplifted before the Lord. This last exercise was something I personally would have practised a bit beforehand because it looked rather precarious to me. It was all rather sweet and fun but I did have some empathy with Andy's grandfather, Rev Ron 'Boss' Frost Snr, who when closing the celebrations said, some what wryly, “At least we will finish with a traditional benediction.” But I know Rob would have loved every glorious minute of it.

Take a Breath

Let me tell you about yesterday. If you have been reading this blog for any length of time you will know that we are in the process of changing to a new care agency (see 'High Anxiety' for example). High Heels has returned to the office and I've not seen her again. Shy Girl, on the other hand, has returned time and again. Much good it's done me. For the first week I barely made eye contact and although she watched the transfer process a few times she didn't get 'hands on' at any point. Eventually she did talk to me, and then she barely stopped talking. Not helping, talking. Meanwhile, Carer number 2 arrives, let's call her Can't Do. Can't Do turns out to be well experienced and capable. But as you will have guessed from her appellation there were things she was unhappy to help with. Hoisting, for example. She had not been given specific permission to use the hoist by her office. She also had a bad back, so some of the tugging and pushing involved was beyond her. She also seemed to be at loggerheads with our regular carers. Can't Do couldn't do and has therefore left the building.

Enter Calepo. Calepo, his real name, is a really nice guy. The only trouble is he has no experience. Until recently he had been a factory worker. He is keen to learn and will, I'm sure, very quickly be an excellent carer. Frankly it has been a relief to see him. And besides, how can you not like someone who asks “Are you happy Mr Stephen?” Calepo not only comes in the morning but also turned up on Friday evening. He arrived arrived with a guy called Christian. Christian is fantastic. He is experienced, friendly and quick to learn. It's a pity he doesn't work mornings.

Anyway, back to yesterday. During the afternoon I was having a minor problem catching my breath and so spent an hour on the ventilator. No big deal, it happens occasionally. Later, as the carers arrived to put me to bed, I was beginning to feel woozy and my lungs were getting bubbly. No problem, I'd be in bed shortly. There were four carers, two from the new agency and two from our current team to demonstrate the correct procedure again. Unfortunately the current carers had rarely been to us before, and never in the evening. So there we all were, four carers and me, in the bathroom, with me dangling above the loo being swung back and forth as people poked hopefully at the controller. Suddenly things became very weird.(well weirder than me swinging above the toilet in a sling with four people looking on.) I couldn't focus and I was becoming confused. As I swung helplessly around I found that I couldn't form the words to issue instructions. As the carers pushed and pulled and lowered and raised me I found myself fading in and out. At long last they got me in approximately the right position, but try as I might I couldn't balance. People pushed, pulled and held me up, but it was no good. I was all floppy. I managed to gasp, “Call Polly.” “What?” they asked. 'Polly,” I mumbled. “What's he saying?” “I don't know. Why don't we call Polly.”

Polly came running in, took one look at me and ushered everyone out. She hoisted me back on to the wheelchair and guided me back to the living room. “He's got Oxygen deprivation,” she explained, slapping a mask on my face. Everyone watched anxiously as I regained my senses. I did of course. The bubbles in my lungs were eventually cleared enough for me to get to bed and on the ventilator. Four carers and Polly did most of the work.

In the morning Calepo and Shy Girl were back along with Jerry one of our regular carers Jerry has been coming to us for a couple of years and is fiercely protective of his clients. Calepo he rates as a good carer in the making but of Shy Girl he despairs. This morning was the final straw. Shy Girl has been coming for two weeks but once again she was no where to be seen. Calepo and Jerry were still helping me wash when she announced she had to leave. Jerry was furious. “How is she meant to learn? She is never here. She never even watches.” Polly agreed. We rang the agency. It was then that we learned that social services had decided that the hand over had gone on long enough and that Jerry would not be coming on Monday. Shy Girl will be the senior carer next week. The office say they'll send new carers starting at the end of next week. We've had so many strangers turning up on our doorstep recently it won't be long before Polly mistakenly invites a couple of Jehovah`s Witnesses in to give me a shower.

“Don't worry,” the nice lady from social services once told us. “You'll be going to one of our specialist care agencies. They'll be very experienced..” God help anyone transferring to a non-specialist agency.

Around and Around

Thank you to everyone who has left a comment or sent an email regarding the death of Polly's father, John. Polly and the family are most appreciative. Pam, Polly's mum, has asked me to read my blog entry 'John Burn` at the funeral as the eulogy. Friends and family have rallied round and as far as these things can be, we're just about sorted.

I know it's a bit corny but it's very Circle of Life around here. This morning Polly was at a baby shower for two friends. (When did the British start having baby showers?) Then on Sunday we are going to the wedding of the son of a friend of ours. And finally on Tuesday we have John's funeral. As I said, Circle of Life.

And yes, Jacq, Sally, Laura and the rest, I will be telling the honeymoon story soon. Did I mention it involves a Swiss Army knife?

Soul Searching

As you might imagine things are a bit up in the air here, with so much to sort out and arrange. Because she is geographically closest to her mum, the role of executor to her fathers affairs has fallen to Polly and the poor girl is awash with insurance documents, death certificates and all the practical arrangements that have to be made. As I write she is meeting the vicar with her mother to discuss the funeral service, and then she has an appointment with the undertaker. There are times she doesn't know if she is coming or going. Yesterday she spent fifteen frustrating minutes frantically searching for her watch, only to realise she had been wearing it the entire time.

The boys are each dealing with the loss of their grandfather in their own ways. When Pam visited yesterday, S (aged 4) announced solemnly, “Nanny's sad. Grandpa's dead.” Then added, “Did you bring any comics?” M (aged 8) has been more philosophical. After taking on board the sad fact that he would never see Grandpa again he has been considering the nature of death. M's way of dealing with things is to talk about them, coming at the subject from different angles until he has exhausted the matter. His initial reaction was to comfort his mum by suggesting a nice cup of tea and that we all sit down and watch an episode of Dr Who. For M there is nothing that can't be made better by a visit to the Tardis. The next day, on his way to school, and after some considerable thought, he gave his analysis of the situation. The soul, he contends, is held trapped in the body. When the body is fit and young there is no problem and the soul remains trapped but as the body gets older and weaker the soul tries to escape. When a person dies the soul can break out and is set free. As far as I can see this does not contradict any of the worlds major religions, so who knows.

The other issue is whether or not M should go to the funeral. M blows hot and cold on the subject. But we are reminded of a friends son who was over heard talking to a classmate saying, “My granny's dead. They asked me if I want to go to the funeral. Think about it, on the one hand an afternoon at school, on the other me gran's funeral. What would you choose? Easy. Funeral!” The two boys then high-fived each other.

John Burn

My father-in-law died yesterday morning. John had been ill for some time, fighting a series of infections, Parkinsons, and a slowly creeping dementia. In the years I knew him he was one of the quietest, most gentle men you are ever likely to meet. He had worked, man and boy, manufacturing prosthetic limbs at Roehampton, in London, including legs for war hero Douglas 'not very nice` Bader. He and Pam had been married for more than 50 years.

I never found out what John thought of his youngest daughter marrying me, he certainly didn't express any concerns to me. Mind you, he wasn't the kind of man to do the 'if you hurt my little girl I'll hunt you down` speech. He was more of a 'do you fancy a cup of tea?` type man. I really liked him. We would often sit together in silence, listening to his wife and daughter engage in their stream of consciousness conversations. Every now and then he would ask what I thought was the best way to the A405. He wasn't going to travel there; he just liked to know. Fair enough.

Jesus said, “In my father's house are many mansions.” I don't see John as a mansion man. He was more of a shed man. He was never happier than when he was in his beloved garden shed, arranging different sized screws and bits and bobs into neatly arranged tobacco tins, and potting up seedlings. There were times in her childhood when Polly thought her father lived at the bottom of the garden.

One of Polly`s fondest memories of John is of a childhood sea side holiday. Polly had been given an inflatable dinghy and she wanted to spend every waking minute bobbing about on the water. John, worried that his daughter would drift out to sea, spent his holiday sitting on the beach holding on to a length of string, so that Polly, anchored to her dad, could play safely knowing that he would never let go. Now she feels it is her who has let go of the string and her father who has drifted away.

We will all miss John very much. His gentle spirit will live on through his children and grandchildren. I'm glad I had the opportunity to know him.

John Burn 1931 - 2008

The Problem With Polly

I married Polly on a sunshine and showers September Saturday in 1993, some two and a half years after I had first laid eyes on her. More than 200 people had travelled from all over the country and as far a field as America to share the day with us. The church, Holy Trinity, Wimbledon, was packed with friends, family and well-wishers and I remember waiting thinking “Please turn up, please turn up”. She did of course, veiled and radiant, as beautiful as anything I'd ever seen, processing up the aisle on the arm of her father. When she reached me at at the altar she took my hand and squeezed it tightly, and in a sense, has never let it go since.

So what's the problem with Polly? Why was she prepared to throw her life away and marry a severely disabled person? What were the possibilities? She is incredibly ugly and therefore grateful that anyone would give her a second glance. Nope. At 24 Polly was lovely. Someone I knew said that if he'd seen her first things would have been different, he would have snapped her up. Polly, when I told her agreed things would have been different, he would never have seen her again. By the way, 15 years later she is still lovely.

Perhaps Polly is one of those women who writes to serial killers on death row and forms romantic attachments safe in the knowledge that she and her beau will never really be together. Nope. Polly had had previous relationships and as far as l know none of them required visitor passes or a full body cavity search. In short Polly was looking for a 'normal` relationship.

So obviously Polly was a deeply insecure woman, lacking in confidence and therefore pathetically thankful for any attention given to her, whatever the source. Nope. Don't forget, Polly had given up a secure job, gone to theatre school, and then moved to Romania for a year to work with the babies with no mummies and daddies. So no, she didn't lack confidence or self-esteem.

During the year Polly and I were engaged all these, and other theories, were speculated upon. Virtual strangers would accost Polly and demand to know if she'd thought through what she was doing. She was told she didn't have to marry me; we could just be friends and she could still look after me. Leaving aside the sagacity or impertinence of the actual advice it was the fact that people felt so free to voice their opinions directly to us. I understand that a degree of gossip was inevitable but it was the sense of being public property that bemused me.

I must say that our friends were wonderfully supportive. They knew us and if they had reservations they didn't feel obligated to direct our attention to them on the pretext of making sure we knew what we were doing.

The wedding went without a hitch. We remembered each others name, the best man did not lose the rings for comic affect, and the littlest bridesmaid remained cute throughout. After the service we processed through the rain, Romanian style, complete with an accordion player leading the way, the few hundred yards to the Methodist Church round the corner where the reception was to be held. Polly had decided

on an afternoon tea theme, and so tables laden with cakes and sandwiches awaited us, as well as a spectacular and beautiful three tier wedding cake. A quartet played in the corner and despite, or perhaps because of, the lack of alcohol the atmosphere was warm and vibrant. My best man, Kevin gave a funny speech at my expense and didn't mention how brave I am once. Despite there being a surfeit of. food Polly and I hardly got to eat a thing, there being so many people from so many facets of our lives to talk to. Eventually we had to leave. We were whisked away in a friends posh car (don't ask what kind, it had four wheels and smelt of leather). But we weren't finished yet.

As our reception was winding down another event was starting a few miles a way in Raynes Park. London

Lights was an event organised by Rob Frost and broadcast live by Premier Radio across London. Rob had asked us to 'pop' in and say hello. Since Rob often employed me as a writer and Polly as an actor (and because Rob was a friend and had been been at the wedding earlier) we could hardly say no. Over 300 people greeted us as once again we walked up an aisle. Singer/songwriter Paul

Field sang us a song and we were copiously covered in confetti. And then, to a standing ovation, we were on our way again.

Kevin and his partner Harvey were already at our flat and had unloaded a mother-lode of wedding presents. We had had a wedding list but I kept forgetting what was on it. I did know there was one thing that I felt we needed but was missed off the list. Which is how we ended up with seven Cafetieres.

That day was nearly 15 years ago. So, to all those people who were worried about us, I think it turned out all right. Of course we still had the honeymoon to come. What could possibly go wrong?

My Left Foot

I'm going to have a quick moan. My foot hurts. It's a minor thing I know, but it's getting on my wick. It's the new wheelchair you see. As you may remember I had my reservations about it but it has proved to be fabulous. The tilt mechanism has meant I can change position easily and that has helped with the general aches and pains. It's the footplates that are the problem. My feet naturally drop and yet the footplates hold my feet at the 'correct' angle. I rarely used the footplates at home with the old Harrier and usually only put them on when I was outside. As a result the soles of my feet are not used to resting on anything. The balls of my feet, particularly the left one, feel bruised as a result. It really really hurts and I'm fed up with it. Moan, moan, moan, I know. I won't do it too often, I promise, but it is part and parcel of my life. Ooh, that's a bit self-pitying, isn't it. Sorry. Maybe tomorrow I'll moan about the weather. . . or my bunions. . . or the price of fish.

Phone Home

Just a very quick post today. We have had to buy a new phone because the old one had become so faint sounding you had to shout very very loudly to be heard; so much so that you may as well have leaned out the window and bellowed in the general direction of the person you were calling. The new phone comes with a manual the size of the local telephone directory and has more computing power than my first PC. I've spent the day programming in numbers and choosing which of the 20 different ring tones to use. More importantly I've had to allocate different screen colours to each category of caller. Plus I've had to work out how to work the integrated answerphone and charge the thing. Polly is complaining that you need a degree in IT to use it. She has, however, chosen the screen saver: a Basset Hound with it's ears flapping. I despair. The phone is a sleek, black technological marvel but is sitting on its sleek, black elegant stand with a dopey long-eared dog glowing on its brightly lit LCD screen. It's a travesty.

High Anxiety

I am not by nature a person who finds life stressful. I am easy going and not inclined to worry unduly about things I can do nothing about. This, given my circumstances, may well be considered a positive trait. So if I tell you that today I am very stressed you will understand that I probably have good reason to be. This morning I had my first glimpse of the new agency that will be taking over my home care. I'm trying to be charitable here, but it was not shall we say, encouraging.

We were being visited by the agency manual handling expert who was coming to observe me getting up and being hoisted, showered and dressed. This was the third attempt, the two previous appointments having been cancelled at short notice, and I was looking forward to meeting members of the experienced and professional team who will soon be integrated in to my life. Two of my regular carers were already here when they arrived and Polly had dashed back from the school run. Soon all five were stood over me in the bedroom. I was introduced to a woman in extremely high heels and a girl, young enough to be my daughter, whom I was told would be coming into me four times a week. The girl gave me a shy smile and that was the last eye contact I had with her for the rest of the visit.

Jerry and Carol went into the familiar routine of getting me up and into the wheelchair. High Heels and Shy Girl looked on as Jerry gave a running commentary explaining exactly what they were doing. Usually copious notes are taken on such occasions. In this case High Heels made a note on the back of her hand in Biro. I made my way to the bathroom and, mercifully, was left to transfer to the loo alone. A little while later I called out that I was ready and Jerry and Carol came in to fit the sling to the hoist. They were half way through when we all began to wonder where the 'observers` were. Carol went to get them. I heard Shy Girl say, “I suppose I'd better see what I'm going to have to do.”

Shy Girl and High Heels sauntered and tottered in to the bathroom and watched as I was flown, Peter Pan like, from the toilet to the shower seat. High Heels made another note on the back of her hand and then she and Shy Girl left. And that was it. Carol and Jerry dared not look at each other or at me. They have always had reservations about the handover and are protective of their clients, I could see they were not impressed but were too professional to say anything.

I may be doing them an injustice. High Heels may be incredibly quick on the up take and able to make assessments at just a quick glance. And for all I know Shy Girl might have a dazzling personality and years of experience. I guess I'll find out. In the mean time I'm just a little bit anxious.

Party of Pirates

So there we all were, dressed as pirates. S, wearing a tabard, a pirate hat and an impressive array of painted on scars, was clutching a plastic musket. M dressed as Captain Jack Sparrow and waving a plastic cutlass at his brother was making Johnny Depp's interpretation of the character look positively restrained. Polly was wearing a (frankly sexy) pirate girl outfit complete with high heel boots and stockings. I was adorned with a skull and crossbones bandanna, stripy T-shirt, gold hooped earring and an eye patch. Wired to the wheelchair was a plastic parrot and mounted on the headrest was the Jolly Roger. Shiver me timbers, my hearties.

We trooped out to the van, ignoring the group of teenagers gathered on the corner, and strapped ourselves in, adjusting the parrot accordingly. Waving casually to our neighbour who, making no attempt to hide her amusement, was watching from her kitchen window, we headed off.

The fancy dress party, to celebrate a friend's birthday, had been arranged months ago. The theme was musicals and since S was adamant he would only go as a pirate we, as a family, were going as The Pirates of Penzance. It was only a short drive to the hall where the party was due to be held and within a few minutes we were pulling in to the car park. Which was empty. Devoid of any kind of vehicle. Utterly deserted. There were no lights on in the hall, nor were there any balloons, or more importantly, colourful characters from the musicals.

We knew there had been a recent bereavement in the family so perhaps the party had been cancelled and since we had not been around for the last week or so we hadn't heard. Anyway, we had no choice but to head home. The same group of teenagers watched us arrive back barely ten minutes after they'd watched us go. They stood in silence, chewing gum like cud, as my children grumbled loudly about being all dressed up with no place to go. Our neighbour, still at her kitchen window, smiled and waved at us. Polly waved back, trying to give the impression that we had just popped out for milk and that she often dressed as a saucy pirate princess to go shopping.