Sunday, 27 July 2008

Go West, Young Man

We are off to Wales on holiday tomorrow. This will have an effect on the blog for a a couple of weeks because getting Wi-Fi where we a staying is a bit tricky. I don't want to get technical on you but essentially unless the sheep are properly aligned and Mrs Jones the farmers wife has her sheets on the line you've got no chance of a signal. Please do check back here occasionally and normal service will be resumed as soon as I have recovered from the trench foot and hypothermia associated with a British summer holiday. Don't be surprised if you hear about unseasonably cold and wet weather in the south west corner of Wales over the next few weeks.

Thank you for reading. Have a great summer.

Wednesday, 23 July 2008

School's Out

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

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

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

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

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

Friday, 18 July 2008

A Clarification (Under No Duress Whatsoever)

Polly, upon reading the last post, The Honeymoon Story (Part Two), wishes me to clarify something; and since she feeds me, cares for my children, attends to my medical needs, and sleeps with me, it would be churlish, not to say dangerous, to deny her.

She wishes me to make known that the reason we ran out of petrol was not because she negligently did not fill the tank when needed but because the petrol gage was faulty and indicated that the tank was ¼ full. There, I'm sure we all feel better for knowing that.

Oh, and while Polly agrees that the incident was terrifying, she says it pales into insignificance when compared to what happened later.

Thursday, 17 July 2008

The Honeymoon Story (Part Two)

In which the police are needed.

Polly drove the hired Ford Escort van north on the M1 and then the M6 to Cumbria and the Lake District. The English lakes are a place of unsurpassed beauty and timeless charm. That crumpled corner of the country has inspired poets such as Wordsworth and authors like Beatrix Potter and, my favourite, Arthur Ransome. I had several happy family holidays there as a child and I was longing to show Polly the region. We were booked into a hotel in Bowness on Windermere just a few minutes from the edge of the districts largest lake.

Our hotel had a wheelchair accessible room in an annex at the back of the older main house. The dining room had views over the lake while our room overlooked the mature grounds. Unsurprisingly, given the previous nights experience, the first thing I did on arrival was check that my wheelchair fitted through the en suite bathroom door. It did. The room was unspectacular but comfortable.

We spent the first few days visiting some of the dozens of meres, waters, and tarns (the Lake District only actually has one 'lake`, Bassenthwaite Lake). Polly insisted we visit

The World of Beatrix Potter, an homage to all 23 of her tales, where we could see Mrs Tiggy-winkle in her kitchen and Peter Rabbit in Mr McGregor's garden. (My sympathies were firmly with Mr McGregor. That rabbit should have been road-kill. Blue jacket or not.) On another day we visited the Steamboat Museum where I was delighted to see the original Amazon from Swallows and Amazons. (You will have to had read the books to understand the excitement I felt. Polly hadn't so to her it was just an old wooden dinghy.)

About a week into our holiday we de

cided to visit Kendal, home of the famous Mint Cake, a confection so sweet you get tooth decay just by looking at it. We took the busy A591 out of Bowness, a multi-lane road that rises over the low fells. As we came round a steep bend the van suddenly juddered to a halt, cars behind us slammed on their brakes and swerved around us, tyres screeched and horns blared. Polly desperately tried to start the engine again but to no avail. A coach hurtled round the bend, missing us by inches, the driver's ashen face flashing by mouthing obscenities, along with forty terrified passengers. “We can't stay here,” I shouted above the roar of traffic. “Oh, really?” replied my beloved. “ I thought now would be a good time for our picnic.” Before I had time to remind her that sarcasm is the lowest form of wit, a lorry sounded it's air horn as it narrowly missed us and we both realised that we were in serious danger. Polly had flicked the hazard warning lights on but they were as effective as a match in a blizzard. We were facing up hill so couldn't roll forward onto the grass verge, and

because of the traffic screaming up behind us we dare not drift backwards. “Any ideas?” I asked.

You must remember this was long before mobile phones were commonplace so the only practical thing to do was find a land line somewhere. We hadn't passed a phone box on our way out of Bowness and there wasn't one in sight a head of us. About a quarter of a mile away on our right, across the busy road, was a farmhouse. It was our only hope. Polly very carefully slid out of the van and, leaping straight out of the frying pan, dashed across the road, ignoring the flattened hedgehogs as she ran. I spent a terrifying 10 minutes, bracing myself for impact at any moment, waiting for her to return and praying whoever lived in the farmhouse wasn't out hunting sheep or worrying sheepdogs or whatever it is farmers in that area do for a living. Eventually she returned and, standing on the verge and shouting through my window, said she had phoned the police and that hadn't she been good not to accept the farmer's kind offer of a cup of tea. In the distance a siren could just be heard above the sound of brakes and horns.

The police car came to a halt right behind us, lights flashing, and two women police officers climbed out. I was hugely relieved to have a buffer between me and the flow of speeding traffic,. While Polly explained to one of officers the situation and how she had risked life and limb to call them, the other one looked daggers at me. You could see her thinking what an oaf I was, sitting there while my wife ran around sorting things out. She tapped on the door and stuck her head through the window. “Excuse me, sir,” she said, making the 'sir' sound as if it were another way saying 'you slug'. “Could you please get out of the vehicle and join your wife on the verge.” “I can't,” I said about to explain. “Get out of the vehicle, sir. You can't stay there, it's dangerous.” Again, I tried to explain. “I'd love to get out, but. . .” “Out now!” “I will as soon as you move your police car back so we can open our van door and get my wheelchair out so I can transfer into it.” There was a pause while the officer rapidly reassessed the situation. “I'm so sorry, sir. You stay there and we'll sort it out. Liz! Move the car back down the hill. The gentleman can't get out of his vehicle. I don't think it's safe for him to get into his wheelchair.” You could see Liz do a double take and realise I wasn't a complete chauvinist slob. The two officers backed away as if the van might burn them and leapt into action. They placed safety cones around us and contacted a garage to fetch a tow truck.

A while later we were towed up the hill and off the main road. The mechanic diagnosed the problem within seconds. We had run out of petrol. We gave up on Kendal and went for a cup of tea instead.

There were five more days of our honeymoon to go. We were looking forward to a pleasant few days. The only thing Polly had her heart set on was a visit to Lakeland Plastics. I couldn't see any reason not to go. It was a decision I would come to regret.

Monday, 14 July 2008

Out For A Duck

Yesterday was my birthday. 47 years, and to the surprise of many, still going strong.

The day started early when an excited 4 year old bounced on me singing 'Happy Birthday to you` and asking if I wanted to open my presents yet. When I eventually surfaced and the carers had left, he cheerfully argued with his big brother about who should help me unwrap what. “Open this one, Daddy. It's from Mummy and me and him.” This one turned out to be a rather lovely coffee maker. The day was off to a wonderful start.

That afternoon Polly had organised a picnic in Beddington Park, just down the road. St Mary's, a chocolate box church, on the edge of the park was having a 'Duck Day' by the river that runs through the tree studded open parkland. We set up in the shade of a Hawthorn tree next to the Wandle and waited for friends to arrive. Already, a little way up stream a stall had been set up to sell the yellow plastic ducks that would race down the river from one small bridge to the next. A few fĂȘte type games had been erected and there was a small refreshments tent. A few hundred people had gathered for the fun.

What followed was one of those idyllic afternoons that you are occasionally blessed with. Good friends, fine weather and a plenitude of food. Polly had baked a huge number scones which she served with the traditional clotted cream and strawberry jam. It could not have been more English if the Queen had come morris dancing through our party whilst eating fish and chips and quoting Shakespeare. Many of the friends who came have young children and they joined together in a running, splashing, shrieking game of incomprehensible (to us adults) rules and laughter, punctuated by breathless breaks as yellow ducks floated downstream on the gentle current, racing to the bridge a few yards from us. The Wandle, at this point in it's meandering course, is only about 20 feet wide and just 9 inches deep. With plenty of adults to cast an occasional eye over them they were left to themselves to dip in and out of the water like a raft of otter pups and we grown ups were left to lie on picnic rugs and chat. Someone had thoughtfully brought along a small table for me to rest my plate on and by the time the afternoon drew to a close it was littered with birthday cards and several bottles of wine.

Later, back at home, with two happily exhausted children tucked up in bed, my friend Kevin popped round to wish me a happy birthday and give me some Trappist beer from Belgium, one of the finest drinks on God's green earth. Later Polly and I drank a bottle to accompany the roasted vegetables and leg of lamb she had cooked for me.

This post should be read whilst listening to Lou Reed's 'Perfect Day' (or better yet, Kirsty MacColl's duet with Evan Dando from her album 'Galore`.)

Thursday, 10 July 2008

The Honeymoon Story (Part One)

In which a Swiss Army knife is needed.

The first night of your honeymoon is supposed to be memorable, and believe me Polly's and mine certainly was. If you've been following the tale of our wedding day then you will know that we had both been sent to be covered in confetti at an event called London Lights. Afterwards we were driven to our flat where we met up with my best man Kevin and his partner Harvey who had been unloading the huge pile of wedding presents and cafetieres.

The story continues. . .

In those long agodays I used a manual wheelchair for everyday use but had a high powered out door electric wheelchair for whizzing to the shops and such like. We had hired a small van for the duration of the honeymoon and Kevin and Harvey helped us load the heavy chair in to it. I made the, by today's standard easy, transfer to the passenger seat and we were off. Polly did not yet know where we were spending our wedding night so I directed us through South London towards Wimbledon.

Polly grew up a few miles from Wimbledon common and had spent many happy times there. On the edge of the common is an area called Cannizaro Park, named for the house that has stood there in one form or another since the 18th Century. When Polly was a girl the house was a rather twee nursing home and she could see

residents taking tea on the veranda from the house's now public gardens. She often wondered what it was like inside the grand building. In the late 1980s the house was converted into a fine country hotel and this was where

we were heading.

Our little Ford Escort van pulled into the car park and found a space between a BMW and a Mercedes and we made our way into the hotel. Dressed in our best going away outfits we didn't look too out of place as we were led to our room but both felt that any second someone would demand to know what we thought we were doing there. Our room was lovely, with an en suite bathroom, and their was a bottle of Champagne waiting for us. We couldn't spend long in there because we had a table booked in the restaurant. So, grabbing our bottle of Champagne, we headed back downstairs.

The restaurant was silver service and when our main course arrived and as two waiters dramatically lifted the silver domes from the plates I watched Polly struggle not to say “Ta-dah”. The meal was great and we realized how hungry we were having not managed more than a mouthful at the reception what with the speeches and the catching up with friends and relatives. It was late by the time we got back to our room and we were both tired.

I went into the bathroom and was relieved to find the wheelchair just squeezed through the doorway without scratching too much paint in the process. A few minutes later, face scrubbed and teeth brushed, I turned the chair around and prepared to return to the room and hopefully some nuptials. Unfortunately although the chair squeezed in it wouldn't squeeze out. The door opened inwards and was prevented from hitting the wall by a small rubber doorstop. On the way in the doorstop gave just enough to allow the chair in but going out was another matter. I tried, I really tried, but on the first night of my honeymoon I was firmly stuck in the bathroom while my beloved changed in to something appropriate for the occasion.

I called for Polly who came and pushed at the door trying to get the doorstop to give enough to let me out. It was useless and after several minutes of trying she had to concede defeat. “I suppose we could sleep in the bath,” I said. “There's a great big comfy bed in there. You can sleep in the bath, I know where I'm sleeping.”

After a few more fruitless moments of increasingly frustrating pushing and shoving Polly had a brainwave. She got up and found her handbag and I heard her rummaging through it. She returned waving a two inch red Swiss Army knife. Somewhere among the serrated blades, pointy things and stone removers was a small screwdriver. The rubber doorstop was was unscrewed and at last I was set free. Polly clicked the knife shut and I followed to the bedroom.

In the morning we were off to the English Lake District for two weeks and by now it was past midnight and we were both exhausted. Polly, armed and beautiful looked at me, smiled and asked, “So, what should we do now?” I looked at her, I looked at the bed. “Sleep?” I said hopefully. “Oh, thank goodness for that,” she said and promptly fell asleep.

Sunday, 6 July 2008

You Are Not Taking Your Disability Seriously lf. . .

You have go-faster stripes on your wheelchair.

You use the battery on your electric wheelchair to power a refrigerator for your beer.

You hire out your wheelchair at the school fair for 50p a ride.

You use your artificial leg as a wine-cooler.

You fit monster truck tyres to your wheelchair.

You install an air horn on your wheelchair.

Your walking frame has runner-beans growing up it.

You have an attachment on your chair especially to hang fluffy dice from.

You go in to chemists and ask if they have a pill to cure you.

You paint pictures with your feet even though your hands work perfectly well.

You go in to shops and ask able-bodied people if they need any help.

You use the ceiling track hoist in your bathroom as a swing.

If you can do better then email me or leave a comment.

Wednesday, 2 July 2008

Bevan's Baby At 60

This week the NHS is 60 years old. I know it is a popular pastime to moan about the ever beleaguered institution and to prophesise its imminent demise but it truly is a wonderful thing. Just think about it, free health care from the cradle to the grave. Yes, I know we pay for it with our taxes but it is free at source when you most need it, whether that be after evening of binge drinking, drilling through your hand whilst doing DIY, or contracting a life threatening disease. Or, like me, have a congenital condition of the kind that makes insurance companies reach for the 'Sorry Closed' sign and avoid eye-contact with you. But how good is it? This good.

Yesterday morning, on the hottest day of the year so far, Polly and I got into our non air-conditioned van and drove in to London for me to attend the Lind clinic at the Royal Brompton Hospital as I do about once every six months. The Brompton is a hospital with a world-wide reputation as a centre of excellence for treating heart and lung disease and is a place I have been attending for the last eight years when I was first hurtled there in an ambulance with lights flashing and siren blaring after failing to recover from double pneumonia and escape from my local hospital's intensive care unit after 3 months. The lung wing of the hospital is based in a Victorian building and Lind ward is on the top floor. The waiting area is a long corridor packed with wheelchairs and people attached to portable ventilators and oxygen tanks. It's one of the few times I look at a group of people and think 'Cor, look all those cripples. I'm really fit.'

After a while someone cuts my earlobe with a razor blade and takes blood with which to analyse my gasses from. They check my BiPap machine settings and then it's back to the increasingly hot and crowded corridor where I slalom my way back through the wheelchairs, walking frames and oxygen tanks. We wait a little longer and then are invited in to a consultation room where I am seen by a doctor. We've met before and he is familiar with my condition. My blood gasses are just about okay but the time has come for me to use the ventilator for an hour or so during the afternoon to rid myself of excess CO2. Deep joy.

I hate using the BiPap during the day. I'm not that keen on it at night but when it broke down a few months ago I discovered what it was like to go without it. I'd spent the following day in a miserable fog of Carbon Dioxide infused headaches. So, love it or hate it, I'm stuck with it. Life with out it would be. . . well, short. The trouble with using it during the day is that it ties you down. You are connected to the machine via a mask and hose and the machine is connected to the mains via. a cable and plug socket. So you are stuck in one place for at least an hour. And they want me to do this every day. Now this is where it gets good.

They asked me what I needed.

I told them I needed a face mask that was suitable for use during the day. The mask I have been using is a small nasal mask which I fancy makes me look like a WWII fighter pilot, but in reality makes me look like a demented scuba diver. It is fine for sleeping with but if you move around it leaks and cold air under pressure is blown in to your eye. It also has a tendency to whistle tunelessly in time with my breathing. I also wanted a way to move around and if possible get outside, more than a few feet from a power socket, so did my BiPap have an internal battery? No. Go and see Steve said the doctor.

Steve is the ventilator man. Steve knows more about BiPaps, Cpaps and all things ventilatory than any one in the south of England. So, while Polly went to book my next appointment I took the lift downstairs to the sleep labs, where Steve hangs out. He greeted me in his usual friendly manner and after listening for a minute vanished in to a store room to reappear with a couple of items. The first was a new type of face mask that plugs directly into my nostrils and is so sophisticated it comes with its own CD-Rom and carrying case. The second item was a battery the size of a small paperback book. Steve apologised that it didn't come with a case but the company that supplied the battery changed extra for them. He reckoned that if you paid £500 (that's $997 or €631) for a battery you should get a protective cover thrown in.. He showed me how to connect it to the Bipap and then stuck a 'Property of The Royal Brompton Hospital' sticker on it and that was that. I wheeled away with both the things I needed to make using the ventilator during the day practical and comfortable. There were no quibbles, no money handed over, I didn't even sign anything. They just gave me the equipment for as long I need it. How good is the NHS? That's how good.

Happy Birthday!