Those of you who follow such things will be glad to know that I will soon be able to resume my life of adventuring. My rafting trip up the river Amazon to train piranhas in dental hygiene techniques will proceed as planned now that my back is so much better. Dr Toosy popped in to check it wasn't osteoporosis and that it is actually getting better. (It wasn't and it is.) I have been been able to cut back on the pain-killers and have started teaching our goldfish to brush regularly.
Rations on my anticipated adventure have been sorted. My team will be eating the tins of baked beans that had previously served as table leg extenders. There may be some argument over who gets the tin of curry flavoured beans. We have been able to free up these valuable resources because Polly has found some wooden blocks that are designed for the purpose of extending furniture legs. They lack the je ne sais quoi of the Heinz tins but are less likely to collapse and squirt tomato juice all over our living room.
Today the man from Serco came and took my old wheelchair away. This was good for two reasons. Firstly it means I feel I can trust my new super-duper wheelchair. There has been no repeat of the breakdown I suffered just days after I first received it. And secondly, we don't have space to store a spare electric wheelchair. The old one has stood in our living room like a particularly unattractive decorative feature. Polly had taken to looking at it gloomily and wondering if she would be able to stand the Christmas tree on it. I had pointed out that the old chair did have a tilt mechanism so that would have helped with the age old problem of getting the tree to stand up straight.
Right, enough for now. I still have to organise with social services for carers to come with me on my Amazonian adventure. There may be a few health and safety issues.
Showing posts with label humour. Show all posts
Showing posts with label humour. Show all posts
Friday, 6 November 2009
Tuesday, 15 September 2009
Managing The Bathroom
I'm not sure how this story will translate for international readers but it made me laugh.
Polly and I have undertaken to project manage the renovation of my sister and brother-in-law's house in Surrey. Helena and Andrew have been living and working abroad for the last few years and the house has been on the rental market. It needs a lot of work doing to it and so various quotes are being acquired. Fortunately Helena was in the country last weekend and was able to go through the various aspects of the job with us in person. She decided, rather than repair the bathrooms, she would have new ones fitted, so asked us to find out how much this would cost. I asked her if she wanted us to refit the downstairs cloakroom while we were doing the bathrooms because a third lavatory wouldn't cost much more than two.
“You might might be able to get a three for two deal or something like that,“ I observed.
“Surely, if you get buy one lavatory and get one free,” quipped Polly, “that special offer would be a BOGOF!“
As I said, it made me laugh.
Polly and I have undertaken to project manage the renovation of my sister and brother-in-law's house in Surrey. Helena and Andrew have been living and working abroad for the last few years and the house has been on the rental market. It needs a lot of work doing to it and so various quotes are being acquired. Fortunately Helena was in the country last weekend and was able to go through the various aspects of the job with us in person. She decided, rather than repair the bathrooms, she would have new ones fitted, so asked us to find out how much this would cost. I asked her if she wanted us to refit the downstairs cloakroom while we were doing the bathrooms because a third lavatory wouldn't cost much more than two.
“You might might be able to get a three for two deal or something like that,“ I observed.
“Surely, if you get buy one lavatory and get one free,” quipped Polly, “that special offer would be a BOGOF!“
As I said, it made me laugh.
Monday, 24 August 2009
Wales 09 or Don't Hold Your Breath
When going on holiday what is the last thing you want to forget? Sun cream? Swimming costume? Wheelchair battery charger? Ah yes, another Deal holiday gets under way with its customary smoothness.
Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.
The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.
A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace bo
th Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)
Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.
We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.
As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.
I sense that a trip to the Royal Brompton Hospital is on the cards.
Fortunately the Paul Sartori Foundation who had the misfortune to be responsible for my homecare while we were in Wales are a superb group of people and managed to wangle a suitable charger from the very nice man who had undertaken to mend the electric bed and overhaul the hoist. Sophie at Paul Sartori must have wondered what terrible thing she had done in a previous life to have merited such severe punishment as having to organise the seemingly endless and complex list of requests phoned and emailed to her from London. The result, however, was a model of homecare provision with a succession of nurses arriving to sort me out morning and evening with good humour and skill. Their team was supplemented by 'No Problem' Greg who drove vast distances morning and night every single day to form the lynch-pin of my holiday care, and met every task asked of him with a cheerful “not a problem”.
The holiday passed with a mix of Welsh sunshine and showers but left us plenty of opportunities to enjoy the lovely local beach. The Pembrokeshire countryside is wonderful and we got to explore some places we had never been before. The boys particularly enjoyed the freedom afforded by a very safe environment and would disappear to play, armed with wooden swords, for hours on end with Alex from next door and other holidaying children. Ten days was not long enough so next year, Paul Sartori Foundation willing, we may try for longer.
A highlight of the holiday was our day spent at the Pembrokeshire County Show. This vast three day event takes over a local air-field and despite my wife's disparaging attitude of “why am I going to look at tractors?” turned out to be great fun. There were horse jumping competitions, dog agility trials and a truly breathtaking motorcycle display team who shot up ramps with such gravity defying acrobatic death-wish like grace bo
th Polly and I wondered if their mothers knew what their sons did for a living. As one young man leapt some fifty feet in the air and casually let go of his bike, we both turned to our open-mouthed boys and said simultaneously “No!“ There were lots of rides and bouncy things for the boys to go on, including an army operated climbing wall which both of them gleefully scrambled up. As Sam abseiled down he banged his head on the tower and a whole platoon of battle hardened soldiers went “Ouch!“ (Sam was fine, his main concern was making sure we had all seen he had climbed as high as Matty.)Of course, it wouldn't be a proper Deal holiday if all had gone smoothly. About a week into our stay the alarm on my BiPap ventilator began to go off with increasing regularity each night. Now the display on the BiPap is something akin to the tactical array on the USS Enterprise and it tells you such useful things as pressure, duration of breath, number of breaths per minute and whether your Phaser is set to stun. You can also turn off the alarm – for two minutes, after which, unless the problem is sorted, the piercing alarm goes off again. . and again. The display told us that there was a leak in the system but if there was we couldn't find it. The alarm began to go off at about 11 o'clock every so often, but by about 3 o'clock it was going off continually. Polly would get up to disarm it time and again but it always went off as soon as she crawled sleep deprived back to bed. It got so bad that Paul Sartori arranged for a night-nurse to stay over for the last night because they were concerned about Polly being safe to drive back to London. The nurse spent the night frantically stabbing at the alarm off button while I was dragged in and out of sleep. I was seriously thinking of taking the wretched machine down to the beach and throwing into a rock-pool. We rang the Brompton hospital but getting an engineer into the wilderness of west Wales is no easy matter especially when mobile phone reception is as variable and unreliable as a Libyan terrorists conviction. In the end we decided to leave it until we got home.
We stopped in Bristol to see my mum on the way home and didn't get back to Carshalton until gone 9 o'clock. That night Polly slept with the BiPap virtually tucked under her arm. Throughout the night the alarm went off time and again. The next day an emergency engineer drove a hundred miles to come and fix it. After prodding and poking it he checked the record detailing the machines history. “There must be some mistake,“ he told Polly. “It says here the alarm went off 582 times last night. That can't be right.“ Polly just laughed hysterically. Further prodding and poking revealed there was nothing wrong with the bloody thing. Which means the problem is not with the machine but with me. Sigh.
As far as I can gather in my sleep befuddled state the problem occurs when I am in deep sleep. Apparently my facial muscles must be relaxing and allowing the pressurised air to escape through my mouth. The BiPap thinks there is a leak and alerts us to the fact. The engineer has given us a different machine that does not have an alarm but unfortunately it is not as powerful as the old one so is only a temporary solution.
I sense that a trip to the Royal Brompton Hospital is on the cards.
Sunday, 21 June 2009
What A Shower
Every so often someone comes up with an idea to improve my life – whether I like it or not.
In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.
Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.
On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.
In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.
It was only later that Polly pointed out that the shower-chair had extendible legs.
At least I'm clean.
In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.
Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.
On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.
In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.
It was only later that Polly pointed out that the shower-chair had extendible legs.
At least I'm clean.
Tuesday, 19 May 2009
Bionics And Gaffer Tape
"Steve Deal, writer. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Steve Deal will be that man. Better than he was before. Better, stronger, faster... so long as Polly has enough gaffer tape."
Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.
The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.
So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.
The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.
In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.
And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.
Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.
The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.
So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.
The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.
In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.
And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.
Thursday, 7 May 2009
G'day
My apologies for the lack of posts this week. Frankly, tapping these missives out letter by letter puts me off writing unless there is something I particularly want to tell you about. This has been a slow week.
Yesterday I was visited by Gina, a community physiotherapist. Usually I have little truck for physiotherapists, who in my experience want to inflict pointless and painful exercises upon me, or wish to pummel me on the chest, ostensibly to clear mucous from the lungs, but in reality to satisfy their own sadistic tendencies, hammering away whilst saying, “there, does that feel better?” Physiotherapy is, generally speaking, a discipline that wishes to inflict pain and suffering with the intention of easing it. So it was with resignation rather than with anticipation that I greeted Gina.
Gina turned out to be quite nice. I think I should make it clear that this sentiment was in no way influenced by the fact that she was a young, blonde, bronzed, pony-tailed Antipodean who by all rights should have been dressed in a swimsuit, running along Bondi beach with a surf board tucked under one arm and with a can of shark repellent held at the ready, preparing to plunge into the foaming sea. No, that thought never entered my mind. Obviously. Not for a second. No.
Gina prodded and pulled me in the manner typical of her profession. She examined ceiling hoists, profiling beds and shower chairs, pronouncing herself unsatisfied at my lack of support, both from certain other services and, less figuratively, from my wheelchair seating position. Polly watched with an amused expression as I tolerated being poked and stretched with uncharacteristic good humour, arching her eyebrow as I said “No, that hardly hurts at all,” as my feet were being twisted into an unnaturally natural position.
Later, with the theme tune to Neighbours unaccountably running through my head, I thought about writing a post for this blog, but then thought, no, I'm too exhausted by my exertions at the hands of a health professional to manage right now. They'll have to wait until tomorrow.
G'day.
Yesterday I was visited by Gina, a community physiotherapist. Usually I have little truck for physiotherapists, who in my experience want to inflict pointless and painful exercises upon me, or wish to pummel me on the chest, ostensibly to clear mucous from the lungs, but in reality to satisfy their own sadistic tendencies, hammering away whilst saying, “there, does that feel better?” Physiotherapy is, generally speaking, a discipline that wishes to inflict pain and suffering with the intention of easing it. So it was with resignation rather than with anticipation that I greeted Gina.
Gina turned out to be quite nice. I think I should make it clear that this sentiment was in no way influenced by the fact that she was a young, blonde, bronzed, pony-tailed Antipodean who by all rights should have been dressed in a swimsuit, running along Bondi beach with a surf board tucked under one arm and with a can of shark repellent held at the ready, preparing to plunge into the foaming sea. No, that thought never entered my mind. Obviously. Not for a second. No.
Gina prodded and pulled me in the manner typical of her profession. She examined ceiling hoists, profiling beds and shower chairs, pronouncing herself unsatisfied at my lack of support, both from certain other services and, less figuratively, from my wheelchair seating position. Polly watched with an amused expression as I tolerated being poked and stretched with uncharacteristic good humour, arching her eyebrow as I said “No, that hardly hurts at all,” as my feet were being twisted into an unnaturally natural position.
Later, with the theme tune to Neighbours unaccountably running through my head, I thought about writing a post for this blog, but then thought, no, I'm too exhausted by my exertions at the hands of a health professional to manage right now. They'll have to wait until tomorrow.
G'day.
Monday, 27 April 2009
Why I Cried On Sunday
You would think that being severely disabled would be enough, but, oh no, on top of FSH MD you can still get all the coughs, colds, infections and allergies that everybody else get to endure. Normally that's just life but occasionally circumstances combine to present you with a very particular situation as occurred on Sunday.
Friends Stewart and Catherine had asked Polly and me to be godparents to their youngest son, Elliot. Wonderful, we were thrilled to be asked and the service was held at our church, Holy Trinity in Wallington on Sunday.
Holy Trinity is one of those Victorian edifices that stands, complete with steeple, on the approach to Wallington and has served the local community for generations. In recent years the multi-purpose, all singing all dancing Trinity Centre has been artfully integrated into the fabric of the structure providing a hall and function rooms as well a kitchen to further serve the people of Wallington. On Sunday a couple of hundred people gathered for the morning service, supplemented by friends and family of Stewart and Cath because the Christening would form part of the service, and sang hymns and worship songs and generally behaved in a typically Anglicany manner.
Stewart and I had placed ramps in position to enable me to get up on to the raised dais. When the time came for the Christening I ascended the ramps and took up my godfatherly position with Polly and the others in the party. We promised to raise Elliot in the Christian faith and on cue he began to cry. Stephen, the vicar, took Elliot to the font and splashed him in an appropriately holy way. Elliot was so surprised he forgot to cry and spent the rest of the ceremony tracking rivulets of water as they dripped from his head.
The problem started for me when the Christening was over and I had to negotiate the ramp again. There is something in the air within the church that makes my eyes run. I don't know if it is the dust, the polish or pollen from the flower displays. It may well be a combination of all three; I don't know. What I do know is that by the end of the ceremony my eyes were streaming so much so that I could hardly see. The ramp was a complete watery blur as I gingerly crept towards it trying to align my wheels so as to slot into each of the 8 inch wide channels. 200 blurry faces watched patiently as I edged forward, tears streaming down my cheeks, hoping I had remembered exactly where each channel was placed. I was so busy trying to line up with the ramp that, when I was finally descending it, I barely remembered to brace myself in time to prevent myself from being pivoted forward and out of the wheelchair in an undignified heap onto the transept in front of the pews. By the time I was back in my place I could barely see anything nor hear anything other than the pounding of my heart.
When the next hymn started I made my way down the aisle, negotiating fellow wheelchair users and baby buggies, and out into the clearer air of the Trinity Centre. The sweet, elderly lady on door duty looked at me aghast. To her I looked like a weeping member of the congregation, fleeing the service in tears. She must have presumed that I was overwhelmed by the awesome responsibility of my godfatherly duties, or so moved by singing about mountains being laid low or what have you, that I was having an emotional and spiritual breakdown. She immediately placed a hand on my shoulder and told me everything would be all right. I assured her it would be and she reluctantly let me go without counselling.
Later, after the service, several people asked me if I was okay and remarked that I looked rather red and flushed. I'm sure I did, though whether from an allergic reaction or embarrassment I couldn't tell you.
The rest of the day was lovely. We had a buffet lunch together and Elliot, slightly bemused, is now presumably safe in terms of his immortal soul until such times that he is old enough to take responsibility for it himself. Maybe, when he is older, he will be told how his godfather was moved to tears on the occasion of his baptism. Be happy, Elliot, God bless.
Friends Stewart and Catherine had asked Polly and me to be godparents to their youngest son, Elliot. Wonderful, we were thrilled to be asked and the service was held at our church, Holy Trinity in Wallington on Sunday.
Holy Trinity is one of those Victorian edifices that stands, complete with steeple, on the approach to Wallington and has served the local community for generations. In recent years the multi-purpose, all singing all dancing Trinity Centre has been artfully integrated into the fabric of the structure providing a hall and function rooms as well a kitchen to further serve the people of Wallington. On Sunday a couple of hundred people gathered for the morning service, supplemented by friends and family of Stewart and Cath because the Christening would form part of the service, and sang hymns and worship songs and generally behaved in a typically Anglicany manner.
Stewart and I had placed ramps in position to enable me to get up on to the raised dais. When the time came for the Christening I ascended the ramps and took up my godfatherly position with Polly and the others in the party. We promised to raise Elliot in the Christian faith and on cue he began to cry. Stephen, the vicar, took Elliot to the font and splashed him in an appropriately holy way. Elliot was so surprised he forgot to cry and spent the rest of the ceremony tracking rivulets of water as they dripped from his head.
The problem started for me when the Christening was over and I had to negotiate the ramp again. There is something in the air within the church that makes my eyes run. I don't know if it is the dust, the polish or pollen from the flower displays. It may well be a combination of all three; I don't know. What I do know is that by the end of the ceremony my eyes were streaming so much so that I could hardly see. The ramp was a complete watery blur as I gingerly crept towards it trying to align my wheels so as to slot into each of the 8 inch wide channels. 200 blurry faces watched patiently as I edged forward, tears streaming down my cheeks, hoping I had remembered exactly where each channel was placed. I was so busy trying to line up with the ramp that, when I was finally descending it, I barely remembered to brace myself in time to prevent myself from being pivoted forward and out of the wheelchair in an undignified heap onto the transept in front of the pews. By the time I was back in my place I could barely see anything nor hear anything other than the pounding of my heart.
When the next hymn started I made my way down the aisle, negotiating fellow wheelchair users and baby buggies, and out into the clearer air of the Trinity Centre. The sweet, elderly lady on door duty looked at me aghast. To her I looked like a weeping member of the congregation, fleeing the service in tears. She must have presumed that I was overwhelmed by the awesome responsibility of my godfatherly duties, or so moved by singing about mountains being laid low or what have you, that I was having an emotional and spiritual breakdown. She immediately placed a hand on my shoulder and told me everything would be all right. I assured her it would be and she reluctantly let me go without counselling.
Later, after the service, several people asked me if I was okay and remarked that I looked rather red and flushed. I'm sure I did, though whether from an allergic reaction or embarrassment I couldn't tell you.
The rest of the day was lovely. We had a buffet lunch together and Elliot, slightly bemused, is now presumably safe in terms of his immortal soul until such times that he is old enough to take responsibility for it himself. Maybe, when he is older, he will be told how his godfather was moved to tears on the occasion of his baptism. Be happy, Elliot, God bless.
Wednesday, 22 April 2009
A Grand Day Out
On Monday the boys had an Inset day and so had an extra day off school. The weather had been uncharacteristically good and so it seemed a pity to waste it hanging around at home doing nothing in particular. Polly and I decided on a grand day out. We piled the boys into the van and set off.
“Where are we going?” asked Sam.
“Somewhere where you have to behave very well, keep very quiet and you absolutely must not smile,” I told him.
“Not smile? Why not?”
“Because they don't like it.” Sam looked doubtful.
“Is it a museum?” chipped in Matty untangling himself from his ipod headphones.
“We're going to the Shed and Fence Panelling Museum,” explained Polly. “ But remember, you mustn't touch the exhibits, however tempting they are.” Matty and Sam exchanged glances.
“Why are we going there?” asked Matt not unreasonably.
“There's nothing like the smell of creosote,” I assured him. At this point we turned into a huge car park and started trawling the lanes for a parking space less than an hours trek from the entrance where a surprisingly large number of fence panel enthusiasts queued for admittance.
It took only a few more moments before the boys faces broke into excited grins. “Chessington World of Adventure!” shrieked Matty. “Can we go to Beano Land?”
I won't write a review of our day at the theme park, there are plenty out on the web if you want to know which rides are worth queuing for. Since I am unable to transfer from my wheelchair to the rides my enjoyment is vicarious. It is Polly who gets to accompany the boys on various thrilling experiences. This wasn't so bad when all they wanted to do was go on rides inspired by the Teletubbies or Postman Pat but nowadays Matty, in particular, wants to go on rides with names like Transylvania and Ramases Revenge. Polly, who gets travel sick on merry-go-rounds, spends a lot of time looking faintly green and in need of regular cups of tea. While she and Matthew hurtle round some flimsy looking scaffolding poles experiencing 4 g inverted turns at 60 miles per hour I get to take Sam to the petting zoo. We both look enviously at each other.
We did all get to enjoy the Sea Life Centre equally together. Oh, and a peculiar 3d haunted house type experience. I loved watching the boys enjoy themselves, dashing from queue to queue, and being remarkably agreeable with each others choice of ride or experience. I did find the uneven pathways and occasional steep hill exhausting and have to admit to being grateful for the odd chance to sit in the sun, reading my book, while my family were catapulted up, down and around.
Towards the end of of our day we found some rides the boys could both queue for and go on on by themselves while their mother and I enjoyed tea and coffee and tried to blot out the infuriatingly incessant jolly music that blasted from hidden speakers all around. Chessington is a fun place to visit but I would go demented if I was there too often. We both agreed that the next time we go to a place like this we will take a teenager with us to do the queuing and the scary rides with the boys. I doubt there will be a shortage of volunteers.
Eventually, as I carried an exhausted Samuel, cuddled up on my lap, out of the park and back to the van he asked sleepily when we were going to see the sheds and fence panels.
“Where are we going?” asked Sam.
“Somewhere where you have to behave very well, keep very quiet and you absolutely must not smile,” I told him.
“Not smile? Why not?”
“Because they don't like it.” Sam looked doubtful.
“Is it a museum?” chipped in Matty untangling himself from his ipod headphones.
“We're going to the Shed and Fence Panelling Museum,” explained Polly. “ But remember, you mustn't touch the exhibits, however tempting they are.” Matty and Sam exchanged glances.
“Why are we going there?” asked Matt not unreasonably.
“There's nothing like the smell of creosote,” I assured him. At this point we turned into a huge car park and started trawling the lanes for a parking space less than an hours trek from the entrance where a surprisingly large number of fence panel enthusiasts queued for admittance.
It took only a few more moments before the boys faces broke into excited grins. “Chessington World of Adventure!” shrieked Matty. “Can we go to Beano Land?”
I won't write a review of our day at the theme park, there are plenty out on the web if you want to know which rides are worth queuing for. Since I am unable to transfer from my wheelchair to the rides my enjoyment is vicarious. It is Polly who gets to accompany the boys on various thrilling experiences. This wasn't so bad when all they wanted to do was go on rides inspired by the Teletubbies or Postman Pat but nowadays Matty, in particular, wants to go on rides with names like Transylvania and Ramases Revenge. Polly, who gets travel sick on merry-go-rounds, spends a lot of time looking faintly green and in need of regular cups of tea. While she and Matthew hurtle round some flimsy looking scaffolding poles experiencing 4 g inverted turns at 60 miles per hour I get to take Sam to the petting zoo. We both look enviously at each other.
We did all get to enjoy the Sea Life Centre equally together. Oh, and a peculiar 3d haunted house type experience. I loved watching the boys enjoy themselves, dashing from queue to queue, and being remarkably agreeable with each others choice of ride or experience. I did find the uneven pathways and occasional steep hill exhausting and have to admit to being grateful for the odd chance to sit in the sun, reading my book, while my family were catapulted up, down and around.
Towards the end of of our day we found some rides the boys could both queue for and go on on by themselves while their mother and I enjoyed tea and coffee and tried to blot out the infuriatingly incessant jolly music that blasted from hidden speakers all around. Chessington is a fun place to visit but I would go demented if I was there too often. We both agreed that the next time we go to a place like this we will take a teenager with us to do the queuing and the scary rides with the boys. I doubt there will be a shortage of volunteers.
Eventually, as I carried an exhausted Samuel, cuddled up on my lap, out of the park and back to the van he asked sleepily when we were going to see the sheds and fence panels.
Tuesday, 14 April 2009
I Miss My Dad
It was a Sunday evening in April 2000, our three week old son was fitfully asleep in his mother's arms and Polly and I were watching the final episode of the first series of Monarch of the Glen, one of those interchangeable 'drama by numbers' that populate the Sunday night television schedule. Archie had declared his love for some pretty Scottish lass and Hector, played by the always good value for money Richard Briars, was causing comedic curmudgeonly confusion as the show built to the series finale cliffhanger. The phone rang, it was my mum, who in a sad, composed voice, told me my father had just died. On the television, in Glenbogle, Scotland, there was a fireworks party.
I haven't written an awful lot about my father in this blog, not for any nefarious reason, and not because it hurts to remember him. The pain and shock of those first few days and weeks have long since past to be replaced by a poignant background gentle sadness that ebbs and flows, waxes and wanes, but only reaches high tides on the occasion of significant anniversaries, such as Christmas and birthdays and as now, the ninth anniversary of his death. Most of the time he hovers happily in the background of my conciousness, a benign and gentle spirit. His death was sudden and relatively unexpected. Only a week or so previously he had come to visit us to see his new grandson, Matthew. But the Muscular Dystrophy he was afflicted with had deteriorated to the extent that each day had become a wearying trial and, when I spoke to him, as I often did, I could sense a depression circling, like a carrion bird, high above him. “Don't ever get old, son,” he said. “Don't ever get get old.” He was sixty-five. He died of heart failure. His name was Roger Harry Deal.
I didn't get to know Roger myself until 1961 where upon we immediately adopted the relationship we would maintain for the rest of his life. I was his son and he was my dad. He never became my best friend, my mate, or my buddy. He was always my dad. From the first day of my life to the last day of his I could not have wished for a better father. I am sure that my brothers and sister feel similarly. He always tried to be fair and ensure that each of us got similar chances and opportunities throughout our
childhood. He never resorted to favouritism however much we tried to explain why the other three did not deserve equal treatment. He was remarkably patient with us. On more than one occasion he was summoned from an important meeting to answer the telephone from one of us requesting his permission to substitute the tin of baked beans Mum had left out for our lunch with a tin of the more exciting Alphabetti Spaghetti. Another favourite telephone call he loved to recount was the one that started "don't worry dad, the Fire Brigade has gone now…"
Anyone who only knew him in the last few years of his life might have been unaware of the many things he was justifiably proud of doing in times past. Born in 1934 he grew up in Wallington, south of London, with his sister Judith and his parents Lois and Gordon. Much of his childhood was spent living through the last world war. He particularly enjoyed collecting scrap metal for the war effort and often reminded us that he'd had to sleep in a shelter down the garden.
As a young man Dad cycled all over Europe. I once found a photo of him standing stark naked about to dive into an alpine lake. When I questioned him about it he came over all wistful and said, "Son, there's nothing like swimming nude in glacial cold waters." And this from a man who moaned if you left the front door open for a second longer than necessary.
In his teens Roger was a Queen's Scout and he maintained an affection for the Scouting movement into adulthood. For many years he ran the 21st Wansdyke cub pack in the local primary school hall. My brother Mark reminded me of Bum football, a game Dad invented. It was just like proper football except that you had to slide around on your bottom, which reduced the chances of injury and exhausted 30 to 40 energetic small boys into the bargain. It was a matter of no small amount of pride to me that I achieved whole armfuls of merit badges. The uncharitable amongst my wolf cub friends put this down to being Akela's son. Dad's innate fairness would never have let that influence him. The truth was simple. I was just a little boy who wanted to please his father.
Another of Dad's claim to local fame over the same period was at the Wansdyke Primary School Bonfire night celebrations. My father would stroll out across the playing field, his distinctive gait easily recognised, and the crowd would hush as he lit the rockets and then cheer as they whooshed into the sky, signifying the start of the display. He was the Rocket Man. Dad loved being centre of attention but was not so keen when irate gardeners held him responsible for aiming his gunpowder propelled missiles so that they'd land on local residents greenhouses, smashing countless panes of glass.
If you had only known Dad when he was confined to a wheelchair you may have been surprised to learn that he used to ride a motorbike. As children we would take it in turns to dash to the red letter box around the corner and wait to be given a ride back home on the little Honda 50. The bike eventually went after he was knocked off it one to many times. Indeed, one of my earliest memories of him is him lying on the settee with his leg in white plaster after he came off worst in a collision with a Danish bacon lorry.
All of Rogers working life was spent in the service of the law. He worked for a variety of solicitors such as Shepherd Norcott & Co, Mead King & Co and Wansboroughs before finding a long-term home in the legal department of Avon County Council. One part of his work involved doing conveyancing work for the police. This involved going out in to the countryside and looking at radio masts. I asked him whether he could tell anything by just looking at a 200 foot high metal tower. He confessed that he couldn't but that he always went on the trips because he enjoyed the ride in a police car.
Dad worked at Avon for twenty years and became a well known and easily identified figure regularly seen coasting along corridors of county power in his electric wheelchair. In 1994 his service was recognised when he was invited to Buckingham Palace for one of the Queen's Garden Parties. Although it has to be said that when it came to an option between sitting in the baking sun on the off chance of meeting Her Majesty and going and getting a cup of tea the choice was not a difficult one.
After retirement he took up voluntary work at Bridge Farm Infant and Junior School where he listened to children practice their reading. One can only imagine the impression he made on the Offsted School inspectors if they ever heard him threaten to flay some little child alive or have them keel hauled if they didn't sit quietly. The children found this hysterical because by this stage dad was so disabled they had to hold up their own books and turn the pages for him. They appear to have loved him. Dad was also a governor of the infant school.
Throughout our childhood family holidays seemed to involve driving vast distances to various windswept parts of the country. Not for the Deals were cushy beach holidays and warm sunshine. Armed only with a Thermosflask and a Tupperware container we'd set out visit various exposed lengths of Hadrian's wall. And let me reassure you, this was in an era long before softy visitor centres had been built. Even today I can't look at an expanse of moor land with out mentally inserting windscreen wipers and a tax disc in the corner.
All this, of course, changed the moment my brothers, sister and I left home. Suddenly Mum was able to persuade Dad to jet off around the world with her. Together they visited Australia, Thailand and much of America and Europe. In 1990 Simon, Helena and I went with them to California. It was a fabulous holiday but I missed the Tupperware.
On one occasion Dad was in Turkey with Mum and his sister Judith. My mother and Judith had gone in to a mosque that was inaccessible to Dad because of the steps. Dad told me that he'd settled down in his wheelchair along side the mosque and dozed off in the shade. He awoke with a start to find local people dropping money into his sun hat. "No, no," he cried. "I'm not begging. I don't need your money, I'm English! English!"
Dad was never more English than when he was abroad. Helena tells of a time she and Mum were in Madrid with him. One evening they dined early in a sea food restaurant which was virtually empty when they entered. A huge platter of shelled and betentacled creatures was placed before them which Dad enthusiastically crunched his way through. (Helena maintains that one of the delicacies was little turtle's feet.) Dad's bonhomie so won over the staff that they plied him with generous glasses of free liqueurs. When the time came to exit the by now crowded restaurant Dad was weaved through the tables in his wheelchair proclaiming that Gibraltar was British and that he was a Cointreau lout.
It was amazing that Dad would eat exotic fare whilst abroad. At home he was deeply suspicious of all food he considered 'ethnic'. This, it should emphasised, had nothing whatsoever to do with race or creed but whether a meal contained the hated lentils. We would frequently phone home to be told in a morose voice that "your mother's cooking me something 'ethnic' for tea." We had visions of Mum serving Dad cus-cus with peppers and a mung bean salad. Usually it turned out to be spaghetti bolognaise.
Dad was something of a Luddite when it came to technology. He never learned to set the video and there are dozens of tapes with a half hour programme two thirds of the way through because he and Mum were going out for the evening. Helena and Andrew offered to buy him the equipment needed to go on line digitally via the television. They asked him if he'd prefer e-mails and the information super highway or an Easter egg. An Easter egg Dad replied. His pleasures were simple. Single malt whiskies and Brookside on the telly.
But his greatest pleasure was his family. We're proud to say that he was proud of us. He loved the fact that we loved him. He took pride in our achievements and would tell anyone who would listen what we all were up to. We take some comfort in that the last few months of his life gave him many things to delight over. Simon and Jaspreet regularly visited him with his grandsons Oliver and Oscar. He was proud at the fact that Mark is researching a doctorate in Disability Issues (which he subsequently gained). Helena and Andrew had just returned from living abroad and so he once again got to meet the then baby Alexander. His last Christmas was made especially exciting by the controversy and success of a song I had helped write going to number one in the charts. It was the first time he'd watched Top Of The Pops in decades. He was even happier when Polly and I had our baby Matthew Tudor and shared more than anyone our relief that Matthew had not inherited the Muscular Dystrophy that has affected our family in so many ways over the years. It will be one of the great sadnesses of our futures that our children will grow up not
knowing their Grandfather. But they will of course hear all the stories. I also find it sad that he died before two of his grandchildren, Theo and Sam, were born.
I once asked what was the best thing he'd ever done. He replied "I married your Mother." Roger was married to our mother, Dilys, for nearly 40 years. I cannot adequately tell you how much he loved her. Oh, he would moan and grumble that she was studying for her degree or at the Disabled Living Centre or in London on the Arthritis Care Help Line or off saving the world. But hardly a phone call went by with out him extolling her virtues in some way or telling us how wonderful she was. I don't wish to give the impression that theirs was some kind of Mills and Boon romance. Hardly. Theirs was a marriage forged in the cut and thrust of family life. They both worked, had four children at the local comprehensive school, and half the family was increasingly disabled, but, thanks to our mother and father, we never once experienced instability or insecurity. I know that I speak for my brothers and sister when I say that if our children grow up loving us half as much as we loved Mum and Dad then we will have been good parents.
Nine years on I still hardly go a day without some passing thought of him. Things happen that I would have enjoyed sharing with him, or would have sought his advice over. He, more than anyone, could have related to recent changes in my condition.
Many different people will remember my father in many ways. He was a quiet man with a huge personality and a sandpaper dry wit. I don't suppose there's ever a really good time to die. But we, his family, take a little comfort in that there were no family schisms left unhealed. Dad knew we were proud of him and I know he was proud of us. I suppose that is at least one definition of a successful and happy relationship.
Roger Harry Deal, 1934 -2000.
I haven't written an awful lot about my father in this blog, not for any nefarious reason, and not because it hurts to remember him. The pain and shock of those first few days and weeks have long since past to be replaced by a poignant background gentle sadness that ebbs and flows, waxes and wanes, but only reaches high tides on the occasion of significant anniversaries, such as Christmas and birthdays and as now, the ninth anniversary of his death. Most of the time he hovers happily in the background of my conciousness, a benign and gentle spirit. His death was sudden and relatively unexpected. Only a week or so previously he had come to visit us to see his new grandson, Matthew. But the Muscular Dystrophy he was afflicted with had deteriorated to the extent that each day had become a wearying trial and, when I spoke to him, as I often did, I could sense a depression circling, like a carrion bird, high above him. “Don't ever get old, son,” he said. “Don't ever get get old.” He was sixty-five. He died of heart failure. His name was Roger Harry Deal.
I didn't get to know Roger myself until 1961 where upon we immediately adopted the relationship we would maintain for the rest of his life. I was his son and he was my dad. He never became my best friend, my mate, or my buddy. He was always my dad. From the first day of my life to the last day of his I could not have wished for a better father. I am sure that my brothers and sister feel similarly. He always tried to be fair and ensure that each of us got similar chances and opportunities throughout our
childhood. He never resorted to favouritism however much we tried to explain why the other three did not deserve equal treatment. He was remarkably patient with us. On more than one occasion he was summoned from an important meeting to answer the telephone from one of us requesting his permission to substitute the tin of baked beans Mum had left out for our lunch with a tin of the more exciting Alphabetti Spaghetti. Another favourite telephone call he loved to recount was the one that started "don't worry dad, the Fire Brigade has gone now…"Anyone who only knew him in the last few years of his life might have been unaware of the many things he was justifiably proud of doing in times past. Born in 1934 he grew up in Wallington, south of London, with his sister Judith and his parents Lois and Gordon. Much of his childhood was spent living through the last world war. He particularly enjoyed collecting scrap metal for the war effort and often reminded us that he'd had to sleep in a shelter down the garden.
As a young man Dad cycled all over Europe. I once found a photo of him standing stark naked about to dive into an alpine lake. When I questioned him about it he came over all wistful and said, "Son, there's nothing like swimming nude in glacial cold waters." And this from a man who moaned if you left the front door open for a second longer than necessary.
In his teens Roger was a Queen's Scout and he maintained an affection for the Scouting movement into adulthood. For many years he ran the 21st Wansdyke cub pack in the local primary school hall. My brother Mark reminded me of Bum football, a game Dad invented. It was just like proper football except that you had to slide around on your bottom, which reduced the chances of injury and exhausted 30 to 40 energetic small boys into the bargain. It was a matter of no small amount of pride to me that I achieved whole armfuls of merit badges. The uncharitable amongst my wolf cub friends put this down to being Akela's son. Dad's innate fairness would never have let that influence him. The truth was simple. I was just a little boy who wanted to please his father.
Another of Dad's claim to local fame over the same period was at the Wansdyke Primary School Bonfire night celebrations. My father would stroll out across the playing field, his distinctive gait easily recognised, and the crowd would hush as he lit the rockets and then cheer as they whooshed into the sky, signifying the start of the display. He was the Rocket Man. Dad loved being centre of attention but was not so keen when irate gardeners held him responsible for aiming his gunpowder propelled missiles so that they'd land on local residents greenhouses, smashing countless panes of glass.
If you had only known Dad when he was confined to a wheelchair you may have been surprised to learn that he used to ride a motorbike. As children we would take it in turns to dash to the red letter box around the corner and wait to be given a ride back home on the little Honda 50. The bike eventually went after he was knocked off it one to many times. Indeed, one of my earliest memories of him is him lying on the settee with his leg in white plaster after he came off worst in a collision with a Danish bacon lorry.
All of Rogers working life was spent in the service of the law. He worked for a variety of solicitors such as Shepherd Norcott & Co, Mead King & Co and Wansboroughs before finding a long-term home in the legal department of Avon County Council. One part of his work involved doing conveyancing work for the police. This involved going out in to the countryside and looking at radio masts. I asked him whether he could tell anything by just looking at a 200 foot high metal tower. He confessed that he couldn't but that he always went on the trips because he enjoyed the ride in a police car.
Dad worked at Avon for twenty years and became a well known and easily identified figure regularly seen coasting along corridors of county power in his electric wheelchair. In 1994 his service was recognised when he was invited to Buckingham Palace for one of the Queen's Garden Parties. Although it has to be said that when it came to an option between sitting in the baking sun on the off chance of meeting Her Majesty and going and getting a cup of tea the choice was not a difficult one.
After retirement he took up voluntary work at Bridge Farm Infant and Junior School where he listened to children practice their reading. One can only imagine the impression he made on the Offsted School inspectors if they ever heard him threaten to flay some little child alive or have them keel hauled if they didn't sit quietly. The children found this hysterical because by this stage dad was so disabled they had to hold up their own books and turn the pages for him. They appear to have loved him. Dad was also a governor of the infant school.
Throughout our childhood family holidays seemed to involve driving vast distances to various windswept parts of the country. Not for the Deals were cushy beach holidays and warm sunshine. Armed only with a Thermosflask and a Tupperware container we'd set out visit various exposed lengths of Hadrian's wall. And let me reassure you, this was in an era long before softy visitor centres had been built. Even today I can't look at an expanse of moor land with out mentally inserting windscreen wipers and a tax disc in the corner.
All this, of course, changed the moment my brothers, sister and I left home. Suddenly Mum was able to persuade Dad to jet off around the world with her. Together they visited Australia, Thailand and much of America and Europe. In 1990 Simon, Helena and I went with them to California. It was a fabulous holiday but I missed the Tupperware.
On one occasion Dad was in Turkey with Mum and his sister Judith. My mother and Judith had gone in to a mosque that was inaccessible to Dad because of the steps. Dad told me that he'd settled down in his wheelchair along side the mosque and dozed off in the shade. He awoke with a start to find local people dropping money into his sun hat. "No, no," he cried. "I'm not begging. I don't need your money, I'm English! English!"
Dad was never more English than when he was abroad. Helena tells of a time she and Mum were in Madrid with him. One evening they dined early in a sea food restaurant which was virtually empty when they entered. A huge platter of shelled and betentacled creatures was placed before them which Dad enthusiastically crunched his way through. (Helena maintains that one of the delicacies was little turtle's feet.) Dad's bonhomie so won over the staff that they plied him with generous glasses of free liqueurs. When the time came to exit the by now crowded restaurant Dad was weaved through the tables in his wheelchair proclaiming that Gibraltar was British and that he was a Cointreau lout.
It was amazing that Dad would eat exotic fare whilst abroad. At home he was deeply suspicious of all food he considered 'ethnic'. This, it should emphasised, had nothing whatsoever to do with race or creed but whether a meal contained the hated lentils. We would frequently phone home to be told in a morose voice that "your mother's cooking me something 'ethnic' for tea." We had visions of Mum serving Dad cus-cus with peppers and a mung bean salad. Usually it turned out to be spaghetti bolognaise.
Dad was something of a Luddite when it came to technology. He never learned to set the video and there are dozens of tapes with a half hour programme two thirds of the way through because he and Mum were going out for the evening. Helena and Andrew offered to buy him the equipment needed to go on line digitally via the television. They asked him if he'd prefer e-mails and the information super highway or an Easter egg. An Easter egg Dad replied. His pleasures were simple. Single malt whiskies and Brookside on the telly.
But his greatest pleasure was his family. We're proud to say that he was proud of us. He loved the fact that we loved him. He took pride in our achievements and would tell anyone who would listen what we all were up to. We take some comfort in that the last few months of his life gave him many things to delight over. Simon and Jaspreet regularly visited him with his grandsons Oliver and Oscar. He was proud at the fact that Mark is researching a doctorate in Disability Issues (which he subsequently gained). Helena and Andrew had just returned from living abroad and so he once again got to meet the then baby Alexander. His last Christmas was made especially exciting by the controversy and success of a song I had helped write going to number one in the charts. It was the first time he'd watched Top Of The Pops in decades. He was even happier when Polly and I had our baby Matthew Tudor and shared more than anyone our relief that Matthew had not inherited the Muscular Dystrophy that has affected our family in so many ways over the years. It will be one of the great sadnesses of our futures that our children will grow up not
knowing their Grandfather. But they will of course hear all the stories. I also find it sad that he died before two of his grandchildren, Theo and Sam, were born.I once asked what was the best thing he'd ever done. He replied "I married your Mother." Roger was married to our mother, Dilys, for nearly 40 years. I cannot adequately tell you how much he loved her. Oh, he would moan and grumble that she was studying for her degree or at the Disabled Living Centre or in London on the Arthritis Care Help Line or off saving the world. But hardly a phone call went by with out him extolling her virtues in some way or telling us how wonderful she was. I don't wish to give the impression that theirs was some kind of Mills and Boon romance. Hardly. Theirs was a marriage forged in the cut and thrust of family life. They both worked, had four children at the local comprehensive school, and half the family was increasingly disabled, but, thanks to our mother and father, we never once experienced instability or insecurity. I know that I speak for my brothers and sister when I say that if our children grow up loving us half as much as we loved Mum and Dad then we will have been good parents.
Nine years on I still hardly go a day without some passing thought of him. Things happen that I would have enjoyed sharing with him, or would have sought his advice over. He, more than anyone, could have related to recent changes in my condition.
Many different people will remember my father in many ways. He was a quiet man with a huge personality and a sandpaper dry wit. I don't suppose there's ever a really good time to die. But we, his family, take a little comfort in that there were no family schisms left unhealed. Dad knew we were proud of him and I know he was proud of us. I suppose that is at least one definition of a successful and happy relationship.
Roger Harry Deal, 1934 -2000.
Friday, 10 April 2009
Thieves Paradise
Since today is Good Friday I thought I'd share this sketch from the show Burning Questions. I have to admit that this is one of my favourite sketches, not least because, although it always got big laughs, I was once accosted after a show and told I would probably burn in hell for mocking our Lord on the cross and should be ashamed of ever having written it. A little harsh I thought but see what you think.
THIEVES PARADISE
[THE SKETCH TAKES PLACE IN THE BAR OF THE LOCAL PUB. THE TWO
CHARACTERS MAY BE SUPPING FROM BEER GLASSES.]
A:
It near broke my heart to see old Barney hanging there.
B:
Hanging where?
A:
On a big wooden cross.
B:
So why was he doing that?
A:
Well mostly because of the nails.
B:
What, real nails?
A:
Yes.
B:
That's a bit barbaric. You could kill someone like that.
A:
They did. Barney, Jim and that Jesus.
B:
So Barney's dead is he?
A:
Yeah, he was crucified.
B:
Nasty.
A:
He was a good bloke.
B:
Well, he wasn't that good. He was a thief. That's why they crucified him I expect.
A:
Yes, but he was a good thief.
B:
No he wasn't. He got caught.
A:
He never had any luck.
B:
No.
A:
Fancy breaking into a geezer's house when you absolutely positively know he's not going to be there, and then being caught in the act when he comes home totally unexpected.
B:
Yeah. What was that bloke's name again?
A:
Lazarus.
B:
Chance in a million that.
A:
Yeah. Poor old Barney.
B:
Mind you, Jim wasn't much better. I mean, fancy breaking into a house only to find the owner had given everything away.
A:
Blooming Zacchaeus.
B:
And fancy both of them breaking into that gate keepers house...
A:
Only to be spotted by an eyewitness.
A and B:
Blind Bartimaeus.
A:
Still, in their line of work they knew they were taking a risk.
B:
What about that other bloke?
A:
Who, Jesus?
B:
What was his crime?
A:
It was funny that. No one seemed to know.
B:
What was he? A thief? Con man? Fraudster? Mugger?
A:
Rabbi.
B:
What, a holy man?
A:
Apparently. He had a sign on his cross saying he was the king of the Jews. But I heard people saying that he was the Son of God.
B:
If he was the Son of God, what was he doing nailed to a cross?
A:
That's what Jim said. He gave him a really hard time, mocking him and shouting at him to save himself and them.
B:
Jim was a hard man.
A:
As hard as nails.
B:
Not quite... What about Barney?
A:
Barney was a bit different. He seemed to recognise something in Jesus.
B:
It's a pity he didn't meet him earlier. He might not have ended up where he did.
A:
They seemed to get on well enough though, given the circumstances.
B:
How do you mean
A:
I heard Barney ask if Jesus would remember him when he came into his kingdom.
B:
As if Jesus didn't have enough on his plate.
A:
That's what I thought. But Jesus made him this promise, see?
B:
What kind of promise can you make to a dying man?
A:
He said, "I tell you the truth, today you will be with me in paradise".
B:
What do you think he meant by that?
A:
That he was for... for... for...
B:
Four sheets to the wind?
A:
No, that he was for... for... for...
B:
For he's a jolly good fellow?
A:
No, that he was for... for... for...
B:
Fortunate?
A:
Hardly. No, that he was forgiven.
B:
Oh.
A:
Yeah, nice thought that.
B:
Any way, I'm going to miss old Barney.
A:
Yeah, but at least his suffering is over.
B:
Was that Jesus the same bloke who's been preaching all over the place?
A:
I suppose so, yeah.
B:
I heard him once.
A:
Oh yeah?
B:
I hope that when he made him that promise he knew what Barney's profession was.
A:
What do you mean? A housebreaker? Well what does that matter now?
B:
Because it was Jesus who said, "In my Father's house are many mansions."
A:
Then Barney really will be in paradise.
© Stephen Deal, 1993
THIEVES PARADISE
[THE SKETCH TAKES PLACE IN THE BAR OF THE LOCAL PUB. THE TWO
CHARACTERS MAY BE SUPPING FROM BEER GLASSES.]
A:
It near broke my heart to see old Barney hanging there.
B:
Hanging where?
A:
On a big wooden cross.
B:
So why was he doing that?
A:
Well mostly because of the nails.
B:
What, real nails?
A:
Yes.
B:
That's a bit barbaric. You could kill someone like that.
A:
They did. Barney, Jim and that Jesus.
B:
So Barney's dead is he?
A:
Yeah, he was crucified.
B:
Nasty.
A:
He was a good bloke.
B:
Well, he wasn't that good. He was a thief. That's why they crucified him I expect.
A:
Yes, but he was a good thief.
B:
No he wasn't. He got caught.
A:
He never had any luck.
B:
No.
A:
Fancy breaking into a geezer's house when you absolutely positively know he's not going to be there, and then being caught in the act when he comes home totally unexpected.
B:
Yeah. What was that bloke's name again?
A:
Lazarus.
B:
Chance in a million that.
A:
Yeah. Poor old Barney.
B:
Mind you, Jim wasn't much better. I mean, fancy breaking into a house only to find the owner had given everything away.
A:
Blooming Zacchaeus.
B:
And fancy both of them breaking into that gate keepers house...
A:
Only to be spotted by an eyewitness.
A and B:
Blind Bartimaeus.
A:
Still, in their line of work they knew they were taking a risk.
B:
What about that other bloke?
A:
Who, Jesus?
B:
What was his crime?
A:
It was funny that. No one seemed to know.
B:
What was he? A thief? Con man? Fraudster? Mugger?
A:
Rabbi.
B:
What, a holy man?
A:
Apparently. He had a sign on his cross saying he was the king of the Jews. But I heard people saying that he was the Son of God.
B:
If he was the Son of God, what was he doing nailed to a cross?
A:
That's what Jim said. He gave him a really hard time, mocking him and shouting at him to save himself and them.
B:
Jim was a hard man.
A:
As hard as nails.
B:
Not quite... What about Barney?
A:
Barney was a bit different. He seemed to recognise something in Jesus.
B:
It's a pity he didn't meet him earlier. He might not have ended up where he did.
A:
They seemed to get on well enough though, given the circumstances.
B:
How do you mean
A:
I heard Barney ask if Jesus would remember him when he came into his kingdom.
B:
As if Jesus didn't have enough on his plate.
A:
That's what I thought. But Jesus made him this promise, see?
B:
What kind of promise can you make to a dying man?
A:
He said, "I tell you the truth, today you will be with me in paradise".
B:
What do you think he meant by that?
A:
That he was for... for... for...
B:
Four sheets to the wind?
A:
No, that he was for... for... for...
B:
For he's a jolly good fellow?
A:
No, that he was for... for... for...
B:
Fortunate?
A:
Hardly. No, that he was forgiven.
B:
Oh.
A:
Yeah, nice thought that.
B:
Any way, I'm going to miss old Barney.
A:
Yeah, but at least his suffering is over.
B:
Was that Jesus the same bloke who's been preaching all over the place?
A:
I suppose so, yeah.
B:
I heard him once.
A:
Oh yeah?
B:
I hope that when he made him that promise he knew what Barney's profession was.
A:
What do you mean? A housebreaker? Well what does that matter now?
B:
Because it was Jesus who said, "In my Father's house are many mansions."
A:
Then Barney really will be in paradise.
© Stephen Deal, 1993
Saturday, 4 April 2009
Killer Zombies
It must have been sometime before last Christmas when Matty came bounding home from school announcing that he absolutely HAD to try out a new game on the computer. The game, he informed us, could be found online at a web address he'd been told about at school. EVERYONE was playing it. Cautiously we typed in the address and were reassured to find ourselves at a game featuring little stick men getting from A to B by solving little logistical problems. Harmless and mentally stimulating. Go for it, Matty, we said, knock yourself out.
A week or so later Polly entered the bedroom to find Matty gleefully cutting down zombies with a bloody chainsaw. Horrified, she yanked him from the computer and demanded to know what he thought he was doing. “I'm killing zombies, Mum,” he explained helpfully. “You have to chop their heads off or they'll eat your brains. If you don't cut them just right they just keep on coming st you. I'm nearly at the next level.” With that he went to start his decapitation rampage again.
“Oh no you don't,” said Polly. “What do you think you are doing?”
“I thought I'd explained. I'm cutting the heads off the undead.”
“No. What do you think you are doing playing a game like this? You know you are not allowed on sites that daddy and I haven't checked.”
“But you did!” exclaimed Matty indignantly. “You said I could last week.”
It turned out that the site that had featured the harmless and, indeed, stimulating stick men game, was this week featuring the slightly less wholesome Killer Zombie game. It was a kind of sample shop for new online game demo's. A collection of a wide span of different game genres. One week, Fluffy Bunnies Dig a Hole type games, the next, Slay Granny with her own Knitting Needles. Polly promptly banished him from the site and he was forbidden to revisit it. Matty sighed but, unlike his chainsaw wielding zombie slayer, knew this was a battle he was not going to win. Used to the seemingly arbitrary nature of grown up's decisions regarding the can and can't dos of life with a computer he wandered off to do something more suitable like picking a fight with his younger brother over which TV channel to watch.
Now, roll on several months.
Polly is approached by the mother of one of Matty's classmates at the school gate. She tells Polly that her son had been found the previous evening playing on the computer a game featuring a bloodfest of zombies. Apparently, she told Polly, her son had found out about this horrible game from our own sweet Matty. Were we aware of the kind of games Matt was playing? Polly assured her we would take immediate action. Summoning him to her she demanded an explanation. “You know you are not allowed to go to that website or play the zombie game, Matty.”
Matty looked puzzled and not a little hurt at this display of mistrust. “I didn't go to the site or play the game,” he said indignantly. “You told me not to.”
“Then why does [your friend] say he learned about the game from you?”
Exasperated, Matty replied, “you said I couldn't PLAY the game. You didn't say I couldn't RECOMMEND it.”
A week or so later Polly entered the bedroom to find Matty gleefully cutting down zombies with a bloody chainsaw. Horrified, she yanked him from the computer and demanded to know what he thought he was doing. “I'm killing zombies, Mum,” he explained helpfully. “You have to chop their heads off or they'll eat your brains. If you don't cut them just right they just keep on coming st you. I'm nearly at the next level.” With that he went to start his decapitation rampage again.
“Oh no you don't,” said Polly. “What do you think you are doing?”
“I thought I'd explained. I'm cutting the heads off the undead.”
“No. What do you think you are doing playing a game like this? You know you are not allowed on sites that daddy and I haven't checked.”
“But you did!” exclaimed Matty indignantly. “You said I could last week.”
It turned out that the site that had featured the harmless and, indeed, stimulating stick men game, was this week featuring the slightly less wholesome Killer Zombie game. It was a kind of sample shop for new online game demo's. A collection of a wide span of different game genres. One week, Fluffy Bunnies Dig a Hole type games, the next, Slay Granny with her own Knitting Needles. Polly promptly banished him from the site and he was forbidden to revisit it. Matty sighed but, unlike his chainsaw wielding zombie slayer, knew this was a battle he was not going to win. Used to the seemingly arbitrary nature of grown up's decisions regarding the can and can't dos of life with a computer he wandered off to do something more suitable like picking a fight with his younger brother over which TV channel to watch.
Now, roll on several months.
Polly is approached by the mother of one of Matty's classmates at the school gate. She tells Polly that her son had been found the previous evening playing on the computer a game featuring a bloodfest of zombies. Apparently, she told Polly, her son had found out about this horrible game from our own sweet Matty. Were we aware of the kind of games Matt was playing? Polly assured her we would take immediate action. Summoning him to her she demanded an explanation. “You know you are not allowed to go to that website or play the zombie game, Matty.”
Matty looked puzzled and not a little hurt at this display of mistrust. “I didn't go to the site or play the game,” he said indignantly. “You told me not to.”
“Then why does [your friend] say he learned about the game from you?”
Exasperated, Matty replied, “you said I couldn't PLAY the game. You didn't say I couldn't RECOMMEND it.”
Thursday, 2 April 2009
The Blue Badge And A Grape
Yesterday I had an appointment with speech and physical therapists at King's Hospital. The appointment was at midday and we set out in good time and arrived within 100 metres with several minutes to spare. Then we tried to park. We circled the area several times. All the disabled parking bays were taken, of course. Predatory parking wardens lurked on every corner. Eventually we pulled into a permit holders only parking bay and hailed the parking warden who had materialised within seconds brandishing his electronic ticket issuing gadget. He asked us if we had a valid blue badge and we pointed at our fully legal, non-counterfeit, in date and valid badge which he inspected through the windscreen with the kind of intensity usually only seen from antiquarian book dealers validating a Shakespearean first folio, before nodding and saying we could park in that space. Relieved, and five minutes late, we rushed into the hospital and found where our clinic was within the maze of corridors.
It is many years since I've seen a speech therapist and spent time reciting carefully annunciated 'Peter Piper picked a peck of pickled pepper' and 'She sells seashells on the seashore' type rhymes so I wasn't sure what to expect. As it turned out she wasn't interested in my 'Round the rugged rock the ragged rascal ran' but with how I was managing with eating and drinking. She timed me drinking a glass of water and studied me intently as I ate a biscuit and a grape, holding my throat as I swallowed. I've never been so self-conscious eating in my life. The reason for this attention was to check that I wasn't choking or, as my granny used to say, make sure the food wasn't going down the wrong way. I was all set for a fight if she recommended that I only eat mashed up or liquidised food but instead she only suggested keeping my head tilted forward when I swallow to keep my trachea closed off. It should help stop me getting so bubbly in the chest of an evening.
The physiotherapist was full of helpful ideas about who to talk to about various issues. A raft of letters are being written on my behalf. I might even get some new shoes. I'm told they will be comfortable but God knows what they'll look like. I'll only wear them if they are made in a Chinese sweatshop like everybody else's.
After the session Polly and I grabbed a sandwich and a coffee because the grape and biscuit combo wasn't quite sufficient for lunch, and besides, no one had offered Polly anything. Afterwards we made our way back to the car, on the windscreen of which was a bright yellow bag containing a £60 parking ticket. In the distance, a parking warden was vanishing around a corner. The smell of brimstone lingered in the air.
It is many years since I've seen a speech therapist and spent time reciting carefully annunciated 'Peter Piper picked a peck of pickled pepper' and 'She sells seashells on the seashore' type rhymes so I wasn't sure what to expect. As it turned out she wasn't interested in my 'Round the rugged rock the ragged rascal ran' but with how I was managing with eating and drinking. She timed me drinking a glass of water and studied me intently as I ate a biscuit and a grape, holding my throat as I swallowed. I've never been so self-conscious eating in my life. The reason for this attention was to check that I wasn't choking or, as my granny used to say, make sure the food wasn't going down the wrong way. I was all set for a fight if she recommended that I only eat mashed up or liquidised food but instead she only suggested keeping my head tilted forward when I swallow to keep my trachea closed off. It should help stop me getting so bubbly in the chest of an evening.
The physiotherapist was full of helpful ideas about who to talk to about various issues. A raft of letters are being written on my behalf. I might even get some new shoes. I'm told they will be comfortable but God knows what they'll look like. I'll only wear them if they are made in a Chinese sweatshop like everybody else's.
After the session Polly and I grabbed a sandwich and a coffee because the grape and biscuit combo wasn't quite sufficient for lunch, and besides, no one had offered Polly anything. Afterwards we made our way back to the car, on the windscreen of which was a bright yellow bag containing a £60 parking ticket. In the distance, a parking warden was vanishing around a corner. The smell of brimstone lingered in the air.
Tuesday, 31 March 2009
A Day In The Life
Polly has been off Clown Doctoring at a hospital in London somewhere. I'm not allowed to give you too many details but it involves her speaking in a west country accent and saying 'curly-wurly' a lot. Oh, and she wears a carrot on her shoulder. As she left this morning she called out to me, “Have a good day,” and then she vanished into the metropolis. I settled down for a 'good' day, by which I mean quiet, and booted up the computer to check emails and manage my football team on Facebook.
11.00am The doorbell shrills and shrieks and warbles at aircraft taking off volume to indicate someone has arrived at the front door and wants my attention. I may have mentioned before that our doorbell is VERY loud because I am disabled, and therefore, presumably deaf. (Visitors to the flat who are here when it rings often think it must be a fire alarm and start tying sheets together in the hope of making their escape.) I attempt to use our intercom system to let whoever it is in but this proves easier said than done. It is supposed to operate via an 'environmental control' system but doesn't any more, so I have to manually push buttons on a unit fitted to the wall. On bad days it can take several minutes for me to align myself in such away so as to be able to press first the 'talk' button and then the 'enter' button. Often, by the time I have, whoever it was who rang the bell has grown old and given up. Today is an okay day and I manage to let the visitor in after he has identified himself as an engineer. You can be sure that if he had said 'robber' I would have asked for further identification. The engineer turns out to be from the Royal Brompton Hospital and has come to fix the BiPap ventilator which has been beeeeeeeeeeping all night for no good reason. (Polly maintains that the alarm should only go off if I am seconds away from death, and only then if it has tried to resuscitate me by itself.) 20 minutes later the engineer gives up and replaces the machine.
11.40am The ear-splitting doorbell goes again. Once again I successfully negotiate the entry system and once again someone identifying themselves as an engineer comes in. This one, from a company whose name is made up entirely from initials, has come to fix the back door opener. He has come equipped with a young man whose job it seem is to hold things. It takes an hour of mild cursing and a lot of Allen keys before the automated door stops opening and shutting of its own accord. The young man passes things beautifully.
12.30pm Kalepo, one of my carers, arrives to help me with lunch and to go to the loo. Fortunately he knows how to let himself in so we are spared being deafened by the doorbell.
2.50pm Once more my ears are made to bleed. This time it is a specialist dermatological district nurse. My skin has been erupting in mini-pimples since a change in my medication. I thought I'd left acne back in my adolescence so I am grateful to see him. He has given me a prescription for a number of salves and lotions that should restore my skin to adulthood.
3.20pm The district nurses (or big stick nurses as Sam calls them) let themselves in and help me go to the loo again. They also wrestle with the coffee-maker, a technology they regard as suspiciously futuristic.
3.50pm Our friend Andi arrives back from the school with Matty and Sam. Within seconds they are arguing about whose turn it is to go on the Playstation 3. I do my daddy thing and make them share.
6.00pm Godfrey, another carer, arrives to help me give the boys their tea that has been in the slow cooker since Polly prepared it this morning.. He leaves 50 minutes later.
7.30pm Both boys fed, showered and ready for bed. Sam read The Avocado Baby, Matty surgically removed from computer. I am the daddy! Now, where's Polly?
7.50pm Polly returns, all curly-wurly'd out.
Monday, 23 March 2009
Get Your Skates On
Yesterday was Matty's ninth birthday and, as you will know if you have or ever have had children, there is nothing quite as exciting as a nine year old child's birthday. We have been building up to the day for months and scientists have yet to devise a device that can measure the vibrational frequency of a boy on the eve of his birthday.
Matty has been choosing his presents for months, with every piece of moulded plastic being carefully analysed and discussed in the playground. In truth he would have been happy if all his gifts came on shiny discs that slot in to various games consoles and computers and that give life to colourful animated hedgehogs and other super-powered creatures. Unfortunately for Matty his mean old parents don't consider unplugging one console and plugging in another sufficient exercise for a growing boy. This is why, along side the shiny discs, there was a large box containing roller-blades and enough knee, elbow and hand pads for him to safely play American football if he should so wish.
It was a beautiful Spring day and so we all trooped outside, after the half hour or so it took to strap and nail on all the padding, to watch Matty glide gracefully around the cul-de-sac. To be fair to him he did really well for a first-timer, managing to mostly stay upright. A friend, Emma, was passing and remarked that he looked like a baby gazelle, which is exactly what he did resemble, a new born gazelle, a tangle of legs, taking its first gangling steps on the Savannah. You half expected a lion to leap out and eat him. To help him gain confidence and to fend off predators we found an exciting new use for my wheelchair. With Matty holding on first with both hands but soon with only one, I towed him up and down the road with him shrieking with laughter and shouting “I'm doing it, Mum. I'm skating!” at the top of his voice. And with his little brother circling him on his scooter cheering him on, it was a joyous occasion.
To add to the excitement yesterday was Mother's day and both Polly's mum and mine had come to visit along with my aunt Megan. Also, my brother Simon came over with one of his boys, Oscar and their puppy, Mini the Minx, leaving his eldest son, Oliver, behind, stapled to a desk to complete a chemistry homework assignment. Mini, some kind of terrier, I think, was wonderfully cute and I was once again relieved that her brothers and sisters had all got homes because Polly was looking decidedly tempted. And to complete this stellar line up, my sister Helena was able to join us having flown in from Malaysia on her way to a business meeting in Houston, Texas. It was lovely seeing everyone and it made Matt's birthday especially special. It was a birthday that seemed to have gone on forever.
On Friday, after school, Matty had invited several friends home for tea and to watch Igor (a CGI animation) on DVD. They decorated cakes and ate popcorn and hot-dogs as well as playing the odd party game. Then on Saturday he and three other friends had gone to see Horrible Histories – The Woeful World War II at Wimbledon theatre after a Happy Meal fuelled lunch. All in all, a birthday to remember.
Sam, who will be five in May, has been planning his birthday since about last July and now that Matty's is out of the way is preparing to step up to the mark. Every other sentence he utters begins, “when it's MY birthday...”
Meanwhile Matt has a whole army of Glatorian Bionicles to build and organise for battle in the arena with their Thomax. And if you don't have a young boy-child around that last sentence will be utterly meaningless.
Wednesday, 18 March 2009
Night Nurse Night Three
Last night, at about 9.00pm, after surgery had closed, Dr Toosy, my GP, dropped in to go through and reassess my medication. We have tweaked and adjusted the list with the aim of getting me a decent nights sleep. And since last night was the night of the night nurse night three I could really do with one. If you've followed the story on Night Nurse and Night Nurse Night Two you may feel a modicum of sympathy.
Polly and I have continued trying to make this work for both of us. Polly has forsaken her princess and the pea act and tried sleeping on the sofa-bed mattress which she had laid on top of a futon and stabilized with the sofa cushions. And, after years sleeping along side me, she has found the absence of the continual rhythmic noise of my BiPap ventilator distinctly off-putting, so she moved the dehumidifier into the living room with her and set it to maximum so the ensuing hum could lull her to sleep.
Meanwhile, at my end of the flat, I had been equipped with a wireless doorbell and the receiver was placed in the kitchen. This meant the nurse could ensconce herself in relative comfort with the kettle and enough space to lay out her comprehensive collection of celebrity gossip magazines and there would be no need to bathe the hall outside my bedroom with a million candle powered floodlight so she had light enough to read them. All that need happen should I need her was for me to press the button on the doorbell and she could forsake Jennifer Aniston for a moment and shuffle up the hallway to attend to my needs. Simple. You'd think so, wouldn't you.
Now, as has been mentioned in previous posts, I feel the cold and lack the means to regulate my temperature efficiently. I also find warmth to have a analgesic effect, especially when I am tired and trying to get to sleep. To this end I have an electric over-blanket inside my duvet cover. I usually have it set at maximum (9) when I first get into bed and turn it to a lower setting after a while. Last night Polly showed the nurse the simple control for the blanket and explained that I'd like it turned down to about 3 in an hour or so. The nurse nodded sagely and returned to the kitchen and to the trials and tribulations of Lily Allen.
An hour or so later I put down my book about television in the 1970s, sated with memories of Kojak, Alias Smith and Jones and Fawlty Towers, and now ready for sleep. The bed was beginning to get uncomfortably warm so I rang my doorbell and heard the bell chime in the kitchen. The nurse came down the hall and politely asked how she could help. I asked for a sip of water and for her to move my arm a little and turn down the electric over-blanket to it's number 3 setting. Moments later I was drifting off to sleep.
I awoke from a dream wherein I was an oven-ready chicken being roasted for dinner. Bathed in sweat I realised that I was being cooked in bed by my blanket which must still be on at its highest setting. I fumbled for my doorbell and summoned the nurse. Once again I asked her to turn down the blanket to the number 3. She fiddled with the control and confirmed it was set on 3. Relieved I slipped back to sleep.
Sometime later I was in a sauna with the door locked on the outside and the temperature indicator reading 'You Are About To Melt'. For some reason my night time carer had failed to actually turn the blanket down it seemed. I rang my bell. Moments later she was assuring me the control was set on 3. Perhaps my faulty body temperature control was even worse than usual. I asked her to turn the blanket down to 2. She did so.
The inside of the volcano was very hot indeed. Molten lava dripped onto my securely bound body. I struggled into wakefulness, bathed in sweat and entangled in my red hot duvet. Once again I called for help and once again I was assured that the control was set at 2. This was very strange and very very uncomfortably.
By the time I had walked through the Kalahari desert dressed as a long-haired pink kitten in a frogman's suit and later been barbecued over a pit of burning coals whilst wrapped in a woolly mammoth's fur coat I was beginning to become stressed. Surely my internal body temperature control wasn't that screwed up?
Puzzled, I asked for the controller to be placed in my hand by the nurse, who was by now regarding me as demented, so I could turn it off myself. As the bed finally began cool I slipped into an uneasy sleep. A glance at the clock told me it was 5am.
An infeasibly short time later Kalepo and Godfrey were calling me awake. As I clawed my way to consciousness I asked to see the controller that had caused me such heated distress all through the night; the controller the nurse had assured me was turned right down. It wasn't of course, it was still set at 9.
So what had happened? Well, it's possible that the nurse was getting some perverse pleasure from torturing me but I'm willing to concede that that is improbable (not to mention libellous).A more likely explanation is that she confused the on/off slider switch which has 3 stages with the temperature dial which has 9. When I asked her to set it to 3 or 2 she thought she had, but in actual fact she had set it to either 75 minutes or 12 hours. It does beg the question why she failed to notice the dial but more significantly why after the third or fourth time I called her and asked her to check it was turned down she didn't wonder about looking at the rest of the controller, which is, after all, only the size of my hand. Could it be that she thought I was making a fuss over nothing? Or, more likely, that she thought I was a bit simple and kept asking her to the same thing over and over again because I didn't know what temperature I actually wanted. I don't know. What I do know is that it was yet another long and difficult night.
Next time it'll be Night Nurse Night Night Four. Fourth time lucky?
Polly and I have continued trying to make this work for both of us. Polly has forsaken her princess and the pea act and tried sleeping on the sofa-bed mattress which she had laid on top of a futon and stabilized with the sofa cushions. And, after years sleeping along side me, she has found the absence of the continual rhythmic noise of my BiPap ventilator distinctly off-putting, so she moved the dehumidifier into the living room with her and set it to maximum so the ensuing hum could lull her to sleep.
Meanwhile, at my end of the flat, I had been equipped with a wireless doorbell and the receiver was placed in the kitchen. This meant the nurse could ensconce herself in relative comfort with the kettle and enough space to lay out her comprehensive collection of celebrity gossip magazines and there would be no need to bathe the hall outside my bedroom with a million candle powered floodlight so she had light enough to read them. All that need happen should I need her was for me to press the button on the doorbell and she could forsake Jennifer Aniston for a moment and shuffle up the hallway to attend to my needs. Simple. You'd think so, wouldn't you.
Now, as has been mentioned in previous posts, I feel the cold and lack the means to regulate my temperature efficiently. I also find warmth to have a analgesic effect, especially when I am tired and trying to get to sleep. To this end I have an electric over-blanket inside my duvet cover. I usually have it set at maximum (9) when I first get into bed and turn it to a lower setting after a while. Last night Polly showed the nurse the simple control for the blanket and explained that I'd like it turned down to about 3 in an hour or so. The nurse nodded sagely and returned to the kitchen and to the trials and tribulations of Lily Allen.
An hour or so later I put down my book about television in the 1970s, sated with memories of Kojak, Alias Smith and Jones and Fawlty Towers, and now ready for sleep. The bed was beginning to get uncomfortably warm so I rang my doorbell and heard the bell chime in the kitchen. The nurse came down the hall and politely asked how she could help. I asked for a sip of water and for her to move my arm a little and turn down the electric over-blanket to it's number 3 setting. Moments later I was drifting off to sleep.
I awoke from a dream wherein I was an oven-ready chicken being roasted for dinner. Bathed in sweat I realised that I was being cooked in bed by my blanket which must still be on at its highest setting. I fumbled for my doorbell and summoned the nurse. Once again I asked her to turn down the blanket to the number 3. She fiddled with the control and confirmed it was set on 3. Relieved I slipped back to sleep.
Sometime later I was in a sauna with the door locked on the outside and the temperature indicator reading 'You Are About To Melt'. For some reason my night time carer had failed to actually turn the blanket down it seemed. I rang my bell. Moments later she was assuring me the control was set on 3. Perhaps my faulty body temperature control was even worse than usual. I asked her to turn the blanket down to 2. She did so.
The inside of the volcano was very hot indeed. Molten lava dripped onto my securely bound body. I struggled into wakefulness, bathed in sweat and entangled in my red hot duvet. Once again I called for help and once again I was assured that the control was set at 2. This was very strange and very very uncomfortably.
By the time I had walked through the Kalahari desert dressed as a long-haired pink kitten in a frogman's suit and later been barbecued over a pit of burning coals whilst wrapped in a woolly mammoth's fur coat I was beginning to become stressed. Surely my internal body temperature control wasn't that screwed up?
Puzzled, I asked for the controller to be placed in my hand by the nurse, who was by now regarding me as demented, so I could turn it off myself. As the bed finally began cool I slipped into an uneasy sleep. A glance at the clock told me it was 5am.
An infeasibly short time later Kalepo and Godfrey were calling me awake. As I clawed my way to consciousness I asked to see the controller that had caused me such heated distress all through the night; the controller the nurse had assured me was turned right down. It wasn't of course, it was still set at 9.
So what had happened? Well, it's possible that the nurse was getting some perverse pleasure from torturing me but I'm willing to concede that that is improbable (not to mention libellous).A more likely explanation is that she confused the on/off slider switch which has 3 stages with the temperature dial which has 9. When I asked her to set it to 3 or 2 she thought she had, but in actual fact she had set it to either 75 minutes or 12 hours. It does beg the question why she failed to notice the dial but more significantly why after the third or fourth time I called her and asked her to check it was turned down she didn't wonder about looking at the rest of the controller, which is, after all, only the size of my hand. Could it be that she thought I was making a fuss over nothing? Or, more likely, that she thought I was a bit simple and kept asking her to the same thing over and over again because I didn't know what temperature I actually wanted. I don't know. What I do know is that it was yet another long and difficult night.
Next time it'll be Night Nurse Night Night Four. Fourth time lucky?
Friday, 13 March 2009
Night Nurse Night Two
I am writing this through a fog of sleeplessness. Night two of the night nurse experiment is over and both Polly and I are growling and groaning in bleary eyed irritation at each other and the world in general. I don't think I spent more than 30 consecutive minutes asleep all night. Having someone parked outside my slightly ajar bedroom door shuffling and flicking magazine pages made out of plate-metal and casting shadow puppets with the blindingly bright reading lamp cunningly positioned to illuminate my bed like a flood-lit football stadium does not for a restful night make. It got to the point where even her breathing echoed round the bedroom like a wailing banshee, shredding my nerves as effectively as a cheese-grater on a broken tooth.
Meanwhile Polly was ensconced in the living room, sleeping on a mattress balanced on the sofa-bed, listening for the slightest disturbance with senses trained by nine years of motherhood. The mattress made the bed more comfortable she tells me, (or, more accurately, snarled at me) but having someone else in the flat, outside the children's room, made her night every bit as restful as mine. Every time the nurse moved, coughed or shuffled her newspaper Polly assumed the boys were under attack and was jolted awake, ready to fight off mad axe-men or rabid wolves. (She was getting a little hysterical by this stage. Sleep deprivation does that to you.) She also said she felt like The Princess and the Pea, balanced on her mattress, balanced on the sofa-bed. Only, of course, it wasn't a pea but a piece of Lego and a model submarine that kept her from Morpheus' gentle grip.
Suffice to say, by next week, when we have night nurse night three, we will have made some changes to the arrangements. I'm thinking about removing every light bulb in the house and sound-proofing the hallway with foam padding. That's if I can stay awake long enough to arrange it.
Meanwhile Polly was ensconced in the living room, sleeping on a mattress balanced on the sofa-bed, listening for the slightest disturbance with senses trained by nine years of motherhood. The mattress made the bed more comfortable she tells me, (or, more accurately, snarled at me) but having someone else in the flat, outside the children's room, made her night every bit as restful as mine. Every time the nurse moved, coughed or shuffled her newspaper Polly assumed the boys were under attack and was jolted awake, ready to fight off mad axe-men or rabid wolves. (She was getting a little hysterical by this stage. Sleep deprivation does that to you.) She also said she felt like The Princess and the Pea, balanced on her mattress, balanced on the sofa-bed. Only, of course, it wasn't a pea but a piece of Lego and a model submarine that kept her from Morpheus' gentle grip.
Suffice to say, by next week, when we have night nurse night three, we will have made some changes to the arrangements. I'm thinking about removing every light bulb in the house and sound-proofing the hallway with foam padding. That's if I can stay awake long enough to arrange it.
Monday, 9 March 2009
Sweeping The Playground
Last Monday Polly and I were invited to take part in the Daffodil day celebration at Westminster Central Hall in London. The theme was The Earth Is The Lords and about 2000 people attended. Polly performed the poem Red Shift and a sketch called Sweeping The Playground. Both pieces went down really well, I'm pleased to say. A few people have asked about the scripts.
Sweeping The Playground came from the show Hopes And Dreams and was a 2 hander. We converted it to a monologue for this event. Before anyone accuses me of some kind of theological inconsistency I'm absolutely happy to accept that Genesis chapter one is a creation myth, and not, as some people bizarrely hold, an accurate and scientific account of the origins of life, the universe and everything. But, as with many myths, there may be truths worth exploring within them.
SWEEPING THE PLAYGROUND
Sweeping The Playground came from the show Hopes And Dreams and was a 2 hander. We converted it to a monologue for this event. Before anyone accuses me of some kind of theological inconsistency I'm absolutely happy to accept that Genesis chapter one is a creation myth, and not, as some people bizarrely hold, an accurate and scientific account of the origins of life, the universe and everything. But, as with many myths, there may be truths worth exploring within them.
SWEEPING THE PLAYGROUND
Just look at this mess, honestly, it's enough to make you weep, isn’t it? And as usual it’s down to me, the caretaker, to clear it up, though it doesn’t seem fair to me. Not that fair comes in to it. I am sweeping one corner of the greatest act of concentrated creativity ever… ever created.
I was there right at the beginning you know. “And God created the heavens and the earth.” Wallop. There I was. It caught me quite by surprise I can tell you. One moment nothing, the next instant ‘Zap!’ you’re stretching your wings and forming a choir. Quite disconcerting I can tell you.
I tried to have a word with the creator, but the Creator, he was already on to other things. He was busy creating the universe. I shouted after him, “it doesn’t have to be so big.” But did he listen? Did he buffalo. I thought to myself, anything this vast and intricate is going to be a nightmare to maintain. I’d better grab a broom.
I can’t you tell how much there is to keep clean. In this galaxy alone there are one hundred billion stars. I told him that he was going over the top. Who needs a hundred billion stars? But he didn’t stop there, oh no. There are billions of galaxies, each one as unique as a snowflake. This was creativity in abundance. A celebration of imagination.
Eventually, when he’d finished painting with broad strokes, so to speak, he got down to detail. Planets and moons and such like. I noticed he paid attention to one planet in particular. A blue green one whipped with white clouds and as beautiful as anything you’re ever likely to see. I could tell he intended this one to be special.
I pointed out to him that he was spending too much time in one place. When you’re painting on a canvas the size of the universe no one is going to appreciate the minutiae. God just smiled. A smile on the face of God is like… is like… the first day of a long holiday. Or it’s a cool breeze on a hot day. It’s like a hot drink after playing in the snow
Yes. When God smiles you know everything is going to be perfect. When God looked at planet earth he smiled.
He loved it. I could tell. He made oceans and he made the land. The oceans he filled with fish and creatures of the deep and the land he sculpted with mountains and plains and valleys. The land was lush with grasses and flowers. Forests quilted the landscape. Creatures walked, crawled and slithered everywhere.
I watched the Creator build his kingdom, though he was less like an architect and more like a child at play. There was joy in his invention.
Then when everything was perfect he reached out and took up a handful of dust from the ground which he shaped and moulded. A head, two arms, legs. Then God breathed his Spirit into the dust and man became alive.
And I thought ‘uh oh, here’s trouble.’ Later, when it had all gone pear shaped, I asked him why he had put such a creature as man into his perfect kingdom.
He showed me the universe again. The countless galaxies, the billions and trillions of stars tied up with cosmic string. Then he showed me man again, puny and imperfect man. And there, uniquely, I saw the divine spark that God had breathed into him at the moment of his creation.
Oh, and he hasn’t ruined everything. There’s still hope. Lots of it. You see the Creator doesn’t see humans as just another cog in the machinery of his universe. He sees them as part of the process of creation. They’re not here to just decorate the kingdom like pretty peacocks. (Which is fortunate really 'cos most of the ones I’ve seen couldn’t decorate a living room with a can of paint and some self-adhesive wall paper. )
My job is just to sweep up, but they can actually build the kingdom of God here on earth.
But it made me think why did God make all this for them? It’s incredible.
But then, ask yourself this, why does any father build anything, if not for his children?
Stephen Deal, 1998
Wednesday, 25 February 2009
A picture Paints
I'm still paying the price for the activities of last weekend. Paul and Darren came on Saturday and then on Sunday Polly and I took the boys to the National Gallery in London. There was a free cartooning workshop being run which we thought the boys would like.
It is many years since I've visited the National Gallery and I had forgotten how wonderful it is. While Polly sat in with the boys I was allowed to wander off and enjoy myself browsing some of the worlds greatest art. I have a particular fondness for the impressionists so I was thrilled to find an exhibition of Alfred Sisley's English and Welsh paintings. In addition there is something wonderful about seeing Van Gogh's Sunflowers or Monet's The Water Lily Pond there in front of you. At times it was like being in the Athena catalogue. All that was missing was a tennis player scratching her backside.
We had lunch in the gallery's restaurant which was disconcertingly posh and expensive. You know that sinking feeling you get when you've been shown to a table by a waiter in a smart suit, who has struggled to move a chair out of the way for you, and then presented you the menu with a flourish, and then, only then, do you realise that the cheapest thing on that menu is a single jammy-dodger biscuit at £2.50 each. Fortunately there was a children's menu so the boys were happy. Polly had the soup of the day and I had some cheese. The cheese turned out to be something or a treat. I'd chosen three different kinds of British cow, goat and sheep's cheeses that came with different kinds of exciting biscuits and breads. Polly helped me eat them and we pretended not to notice the couple who decided not to sit next to us.
By the time we got home that evening I was exhausted. The trouble with January and February is that I go for days at a time not doing much. I need the warmer weather so I can get out more and build up my stamina. Roll on Spring.
It is many years since I've visited the National Gallery and I had forgotten how wonderful it is. While Polly sat in with the boys I was allowed to wander off and enjoy myself browsing some of the worlds greatest art. I have a particular fondness for the impressionists so I was thrilled to find an exhibition of Alfred Sisley's English and Welsh paintings. In addition there is something wonderful about seeing Van Gogh's Sunflowers or Monet's The Water Lily Pond there in front of you. At times it was like being in the Athena catalogue. All that was missing was a tennis player scratching her backside.
We had lunch in the gallery's restaurant which was disconcertingly posh and expensive. You know that sinking feeling you get when you've been shown to a table by a waiter in a smart suit, who has struggled to move a chair out of the way for you, and then presented you the menu with a flourish, and then, only then, do you realise that the cheapest thing on that menu is a single jammy-dodger biscuit at £2.50 each. Fortunately there was a children's menu so the boys were happy. Polly had the soup of the day and I had some cheese. The cheese turned out to be something or a treat. I'd chosen three different kinds of British cow, goat and sheep's cheeses that came with different kinds of exciting biscuits and breads. Polly helped me eat them and we pretended not to notice the couple who decided not to sit next to us.
By the time we got home that evening I was exhausted. The trouble with January and February is that I go for days at a time not doing much. I need the warmer weather so I can get out more and build up my stamina. Roll on Spring.
Tuesday, 17 February 2009
Wee Or Walk
Sam, as was previously mentioned in the last post, has been diagnosed with a urinary infection and put on a course of antibiotics. I'm glad to report that he is much better. However, at the time of the diagnosis, when he felt quite ill, he gave his condition some consideration.
“Not being able to walk,” he told his mother, with a nod towards me, “is this bad.” He held up his thumb and forefinger an inch apart. He then increased the gap between digits by at least double. “A urinary infection is this bad.”
To be fair, I can't walk and at times I've had urinary tract infections. I think I agree with Sam.
Tomorrow I'm off to Kings Hospital to see a neurologist who specialises in neuro-muscular conditions. I'm expecting nothing less than a cure.
“Not being able to walk,” he told his mother, with a nod towards me, “is this bad.” He held up his thumb and forefinger an inch apart. He then increased the gap between digits by at least double. “A urinary infection is this bad.”
To be fair, I can't walk and at times I've had urinary tract infections. I think I agree with Sam.
Tomorrow I'm off to Kings Hospital to see a neurologist who specialises in neuro-muscular conditions. I'm expecting nothing less than a cure.
Sunday, 15 February 2009
It Must Be Love
It was, as you know, Valentines day yesterday and I had remembered. I had arranged delivery of a rather beautiful orchid for Polly and also a book she very much wants to read. (The Shack by William P Young.) So, all in all, brownie points were accrued.
In the afternoon Polly took the boys over to my brother's house to see a litter of puppies with firm instructions not to bring one back. The puppies' mother, Billy-Whiz (named by the boys' cousin, Oscar, after the Beano character) had had seven. Despite ineffable cuteness, Polly managed to resist their furry four-pawed charm, though she admits it was a very close call. Fortunately all seven had been found homes or, I suspect, I would be writing this whilst trying to stop a yapping thing cocking its leg on my back wheel.
We had cancelled the evening care so I could stay up late like a proper grown up and Polly and I could have a quiet meal together sans children. We had a couple glasses of something, a Marks & Spencer ready meal (at this point Polly would like to make it clear that she is perfectly capable of cooking a romantic meal for two from scratch but the idea was to make it easy) and watched some comedy. We have been together for 17 years all told. Things have not been easy recently as we have had to deal with changes in my condition. Tonight was our night. I love her so much. We gazed fondly at each other. And I knew, as I looked deep in to her lovely green brown eyes, that... .
We were not alone. A bleary eyed and teary Sam stood in the doorway. Even at a glance you could see he wasn't well. He was drenched in sweat and flushed red. Romance was no longer on the cards.
Sam spent most of the night in our bed. First thing this morning Polly took him to the walk-in clinic at St Georges where he has been diagnosed with a urinary infection and put on a course of antibiotics and given a follow up appointment for Friday.
As I write this he is sat watching television and looking perfectly well. Meanwhile Polly has taken Matty on an 'extreme' survival course at the local environmental centre to learn how to light fires and live off the land. Polly, as she pulled on her coat, said she felt being a parent was enough of an extreme survival course. Maybe they'll let her build a bivouac to curl up in and catch up on some sleep.
At least she doesn't have to walk the dog.
In the afternoon Polly took the boys over to my brother's house to see a litter of puppies with firm instructions not to bring one back. The puppies' mother, Billy-Whiz (named by the boys' cousin, Oscar, after the Beano character) had had seven. Despite ineffable cuteness, Polly managed to resist their furry four-pawed charm, though she admits it was a very close call. Fortunately all seven had been found homes or, I suspect, I would be writing this whilst trying to stop a yapping thing cocking its leg on my back wheel.
We had cancelled the evening care so I could stay up late like a proper grown up and Polly and I could have a quiet meal together sans children. We had a couple glasses of something, a Marks & Spencer ready meal (at this point Polly would like to make it clear that she is perfectly capable of cooking a romantic meal for two from scratch but the idea was to make it easy) and watched some comedy. We have been together for 17 years all told. Things have not been easy recently as we have had to deal with changes in my condition. Tonight was our night. I love her so much. We gazed fondly at each other. And I knew, as I looked deep in to her lovely green brown eyes, that... .
We were not alone. A bleary eyed and teary Sam stood in the doorway. Even at a glance you could see he wasn't well. He was drenched in sweat and flushed red. Romance was no longer on the cards.
Sam spent most of the night in our bed. First thing this morning Polly took him to the walk-in clinic at St Georges where he has been diagnosed with a urinary infection and put on a course of antibiotics and given a follow up appointment for Friday.
As I write this he is sat watching television and looking perfectly well. Meanwhile Polly has taken Matty on an 'extreme' survival course at the local environmental centre to learn how to light fires and live off the land. Polly, as she pulled on her coat, said she felt being a parent was enough of an extreme survival course. Maybe they'll let her build a bivouac to curl up in and catch up on some sleep.
At least she doesn't have to walk the dog.
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