Regular readers of Quicksketch’s ‘How to be an inspiration’ blog may be familiar with a couple of lads that shared his childhood with him. May I introduce my self as being one of those two boys and I go under the blog moniker of ‘Rock God’ although the name that my mother gave me was Paul.
I imagine that many of you have become concerned that Quicksketch or ‘Stephen’ as his mother likes to refer to him when he’s in the dog house has not put pen to internet paper for over 8 months now and you may by now be thinking the worst.
Can I right from the very outset reassure you that Stephen is still very much with us and has plenty of stories yet to tell.
However; as you will undoubtedly be aware from this blog Stephen’s condition has begun taking a more aggressive toll on his ability to undertake many of the day to day tasks that most us take for granted. This sadly includes Stephen’s ability to write.
Although with the aid of an Ipad and a stylus he is still able to correspond in way of e-mail, the time it would take to construct this blog would be prohibitive as well as exhausting. Although his creative mind is as sharp and witty as ever his physical prowess is now considerably limited to short e-mail sentences.
Stephen’s writing style also prevents him from just kicking back and reciting his beloved words of knowledge as he likes to see the written word unravel in front of him. Well, that’s his excuse any way. Personally I can well see him reclining in his boudoir, sipping champagne and nibbling on the occasional goat hoof whilst pontificating words of wisdom to a bespectacled sycophant.
This being said it was brought to Stephen’s attention that his loyal readers were already in a state of withdrawal and that all those that don’t know him personally might begin to suspect that he may have gone and fallen off this mortal coil.
And so finally he allowed me the privilege of penning a few short words just to keep you loyal readers informed of the proceedings in the lives of the Quicksketch family.
The biggest piece of news is that the council of ‘wherever’ have finally got their oversized thumbs out of their collective rear ends and have granted the family new housing.
By new housing I mean a brand spanking new three bedroom house that is specifically equipped for the disabled including proper hoists and a lift that will allow Stephen the luxury of going upstairs to bed (myself and fellow childhood friend Darren spent a happy afternoon going up and down in this I can assure you, although we were informed by Stephen’s wife that the majority of those that had enjoyed this experience thus were actually children).
The house has a brand new purpose built kitchen with work tops at a lower level so that Stephen if he is inclined can actually reach things (their previous kitchen work tops were so high I had to step on tip toe and I am nearly six foot tall).
There are two bathrooms that will afford both Stephen and Polly the luxury (my wife would site this as a necessity) of having a long soak in a bath. It also means that Polly and the boys will be able to get themselves ready at the same time as Stephen and he will no longer have to wait until they are done with their ablutions.
The best part of the house is a large living room that has a magnificent view of their new garden. Yes, QS will be able to sit and enjoy the grounds of his very own estate.
This family have never asked for anything from anybody. Both Stephen and Polly have worked hard all their adult lives and continue to do so. They have paid their taxes and have never expected or asked for hand outs. Personally I think it is a disgrace that they have had to wait for so long for the one thing that they have needed a bit of a hand with and they certainly didn’t ask for anything that millions of people in the UK take for granted. But that noise is just me falling off of my soap box again.
Anyway, Darren and I were well excited with the new family dwelling and we were doubly impressed as always at how Polly held all the strands together (she took no prisoners and greeted us on the door step with tools and instructions…we had a happy afternoon dismantling things, something we do best).
God willing this new abode will make life considerably easier for the family and you never know, it might inspire QS to consider dictating his memoirs to a willing scribe.
With his blessing I will pop by from time to time and keep you up to date with what is going on in our favourite author’s world. Just please be patient, I live in another part of the country to Stephen and so I don’t have as much contact as I should or want. So please just drop in from time to time to see if anything new is up.
On Stephen & Polly’s behalf, thanks for your interest, concern and if you are so inclined prayers.
RG
Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts
Tuesday, 7 June 2011
Wednesday, 6 January 2010
A Week In The Life
We are now a week into 2010 and this is my first post of the new decade. It has been an interesting week, here are some of the highlights.
On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.
New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.
On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.
January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.
In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.
January 5th – the boys go back to school.
January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.
So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.
Until next time.
On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.
New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.
On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.
January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.
In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.
January 5th – the boys go back to school.
January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.
So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.
Until next time.
Wednesday, 30 December 2009
That Was The Year That Was
As we slide down the razor blade of life (as Tom Lehrer had it) into 2010 I am compelled by convention to look back on 2009 with consideration.
I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.
Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.
A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.
Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.
Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.
So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.
Until next time...
I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.
Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.
A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.
Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.
Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.
So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.
Until next time...
Wednesday, 23 December 2009
Blackout - Call 999
I feel sufficiently recovered to tell you about the events of Sunday night. Those of a nervous or sensitive disposition should skip this post and find something nice to do like decorating a pine tree.
Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.
By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.
And then there was a power cut.
The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.
My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.
Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.
Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.
Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.
By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.
Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.
I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.
Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.
I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.
Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.
I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.
This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.
Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.
Seasons greetings. Until next time...
Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.
By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.
And then there was a power cut.
The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.
My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.
Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.
Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.
Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.
By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.
Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.
I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.
Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.
I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.
Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.
I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.
This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.
Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.
Seasons greetings. Until next time...
Monday, 23 November 2009
Me Versus The Blackberry Storm 2
I am one of those fortunate people who knows instantly what to do when faced with a computer or technology based problem. I call my friend PJ and beg him to sort it out. However, occasionally I am the person called upon to impart wisdom on matters technological. I swear that I have never pretended knowledge of anything more complex, computer-wise, than an abacus but sometimes people mistake my intense concentration when I am writing for computer literacy. My mother, who has one son with a doctorate in computer science who runs a highly successful software company, still prefers to ask me to solve her internet connection problems. My advice usually goes as follows: “Turn everything off, mum. Wait five minutes and then turn everything back on again.”
Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.
Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.
The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.
Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.
The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.
I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.
Until next time.
Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.
Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.
The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.
Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.
The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.
I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.
Until next time.
Tuesday, 10 November 2009
A Long Dark Midnight Snack Of The Soul
On Saturday Paul and Darren (also known as Rock God and Bass Bin) pulled the hay from their hair and smartened themselves up to make the trip east to the big city and to visit me. As ever I feigned delight at seeing them and we soon fell into a decades old pattern of abuse and nostalgia. Having known each other since infancy we have a lot of nostalgia between us.
Paul, when not playing deafeningly loud rock music in dozens of west country pubs and music venues, works as an administrator in the beloved NHS where he is a highly valued, well motivated and appreciated member of a dedicated team. Or as he puts it - “Just because you're essential doesn't mean you're important.”
Darren runs his own company called Project Link where he oversees the building of refrigeration storage unit type thingies. In a very real sense he is a fridge magnate.
It was great to see them both again, even if it meant I missed a fireworks party round at Catherine and Stewart's home. But as Cath told me at the school gate when I was rounding up the boys from their educational duties, I can see them any time. I then realised I hadn't seen them in ages, what with chest infections, bad backs, and sheer bone-idleness. Then I felt guilty.
I'm was feeling exceedingly emotionally frail yesterday due the mother of bad nights I had had. Usually I fall asleep quite easily and when I don't I have certain mental processes that normally are effective. Failing those, I just read some more. No problem. That night nothing worked. I don't normally get stressed about the odd night of insomnia; after all, it's not as if I have anything too critical to do the next day. But as the night dragged on and on I began to feel trapped. All I wanted to do was get up, wander about for a few minutes, and perhaps make myself a drink. Of course I couldn't. Getting up for a few minutes would take about fifteen minutes and then another ten or so to get back in to bed. Not to mention the time it would take for the ambulance to arrive if I tried to make a hot drink. The trouble was I can remember being able to do those things. I can remember making my own hot drinks and carrying them safely to a table. I can remember just getting out of bed because I had forgotten something. My brain, on Sunday night, kept telling my body to just get on with it and my body just laughed. I became increasingly aware of all the things I can't physically do any more, which at 3 in the morning is a very dark place to be, both literally and figuratively. (Well not literally actually. Our bedroom is anything but dark, what with the little green light from the ceiling hoist, the orange battery charger light, the red bedside clock, the varying green light on the ventilator, the hoist power supply light and, of course, the ubiquitous sodium orange glow of urban living that leaks through the curtains. Sometimes I think we should relocate the room to Blackpool.)
I am perfectly aware that it was sleep deprivation that was behind my long dark midnight snack of the soul. Once the thought was in my head I couldn't switch it off. I lay there feeling trapped. Of course, it wasn't sufficient for me to suffer alone. My occasional gentle shuffling eventually woke the light of my life who was full of sympathy (the first few times). Apparently me turning a small light on to read by in the middle of the night occasionally can be a little bit annoying. (Who knew?)
I survived, of course, although, for some reason, Polly was a little bit tetchy the next day. I'm not naturally given to navel-gazing self pity (unless I'm writing this blog) so I found the experience a bit disconcerting. Even worse, Polly, who habitually reads this over my shoulder while I write, in case I malign her in any way, became all upset when she read I felt trapped. “What do you mean, trapped?” she demanded. “Trapped in a loveless marriage?” “What? No!” I answered, genuinely confused. “Oh, that's okay then,” she said, somewhat mollified. “I was just checking.” Then she added, “You need to get some fresh air.” Which is why I ended picking up the boys from school, meeting Cath, and feeling guilty of friendship neglect. Who says life has no symmetry.
End of ramble. Until next time.
Paul, when not playing deafeningly loud rock music in dozens of west country pubs and music venues, works as an administrator in the beloved NHS where he is a highly valued, well motivated and appreciated member of a dedicated team. Or as he puts it - “Just because you're essential doesn't mean you're important.”
Darren runs his own company called Project Link where he oversees the building of refrigeration storage unit type thingies. In a very real sense he is a fridge magnate.
It was great to see them both again, even if it meant I missed a fireworks party round at Catherine and Stewart's home. But as Cath told me at the school gate when I was rounding up the boys from their educational duties, I can see them any time. I then realised I hadn't seen them in ages, what with chest infections, bad backs, and sheer bone-idleness. Then I felt guilty.
I'm was feeling exceedingly emotionally frail yesterday due the mother of bad nights I had had. Usually I fall asleep quite easily and when I don't I have certain mental processes that normally are effective. Failing those, I just read some more. No problem. That night nothing worked. I don't normally get stressed about the odd night of insomnia; after all, it's not as if I have anything too critical to do the next day. But as the night dragged on and on I began to feel trapped. All I wanted to do was get up, wander about for a few minutes, and perhaps make myself a drink. Of course I couldn't. Getting up for a few minutes would take about fifteen minutes and then another ten or so to get back in to bed. Not to mention the time it would take for the ambulance to arrive if I tried to make a hot drink. The trouble was I can remember being able to do those things. I can remember making my own hot drinks and carrying them safely to a table. I can remember just getting out of bed because I had forgotten something. My brain, on Sunday night, kept telling my body to just get on with it and my body just laughed. I became increasingly aware of all the things I can't physically do any more, which at 3 in the morning is a very dark place to be, both literally and figuratively. (Well not literally actually. Our bedroom is anything but dark, what with the little green light from the ceiling hoist, the orange battery charger light, the red bedside clock, the varying green light on the ventilator, the hoist power supply light and, of course, the ubiquitous sodium orange glow of urban living that leaks through the curtains. Sometimes I think we should relocate the room to Blackpool.)
I am perfectly aware that it was sleep deprivation that was behind my long dark midnight snack of the soul. Once the thought was in my head I couldn't switch it off. I lay there feeling trapped. Of course, it wasn't sufficient for me to suffer alone. My occasional gentle shuffling eventually woke the light of my life who was full of sympathy (the first few times). Apparently me turning a small light on to read by in the middle of the night occasionally can be a little bit annoying. (Who knew?)
I survived, of course, although, for some reason, Polly was a little bit tetchy the next day. I'm not naturally given to navel-gazing self pity (unless I'm writing this blog) so I found the experience a bit disconcerting. Even worse, Polly, who habitually reads this over my shoulder while I write, in case I malign her in any way, became all upset when she read I felt trapped. “What do you mean, trapped?” she demanded. “Trapped in a loveless marriage?” “What? No!” I answered, genuinely confused. “Oh, that's okay then,” she said, somewhat mollified. “I was just checking.” Then she added, “You need to get some fresh air.” Which is why I ended picking up the boys from school, meeting Cath, and feeling guilty of friendship neglect. Who says life has no symmetry.
End of ramble. Until next time.
Saturday, 24 October 2009
In A Glass Box
Last night Polly, the light of my life, had been invited to perform a couple of pieces at a local arts centre as part of an evening of monologues called A Moment To Mutter. Being a thoroughly supportive husband, and appreciative of the high quality of cake served at this establishment, I agreed to accompany my beloved to the show. And since we hadn't organised a babysitter we gave the boys a late pass and took them with us. We even remembered, at the last minute, to cancel the carers.
The Lantern Arts Centre is located within part of the building that is the monolithic Raynes Park Methodist Church in south London. Over the years it has evolved from an enthusiastically amateur underfunded enterprise into a slickly professional underfunded enterprise. On Friday nights they put on, or invite artists to perform, shows in their Café Studio, a smallish theatre on the 3rd floor. After much fund-raising and lobbying for grants, a few years ago they installed a lift (elevator) which finally made the centre fully accessible to all. The management at the Lantern Arts Centre are committed to inclusivity as is testified to by the huge range of shows and services they put on and provide in and around the local community.
I have ridden the lift to the Café Studio many times in the past, both as a performer and as a member of the audience, I don't have a particular fear of lifts, and this one is essentially a glass box with minimal claustrophobic potential, but even so, my heart rate goes up a little as the surprisingly fragile seeming glass door closes behind me and an electric motor starts to whine. We had sent the boys haring up the flights of stairs that created the stairwell through which the lift rose and Polly and I had entered the lift and closed the glass door behind us. Polly pushed down on the large UP button and held it down and the electric motor engaged. The tone of the electric motor was not that of a contented piece of machinery going about it's business of perpendicularly raising passengers forty or more feet into the air in a safe, reliable manner, but was rather that of a straining put-upon cantankerous piece of groaning mechanical misery. Some eighteen inches into our alarmingly juddery assent Polly removed her hand from the aforementioned UP button and we came to a halt.
People peered over banisters at the new exhibits and I wondered if they were expecting some kind of show. Then it came to me, I could be a mime trapped in a glass box! Polly pushed hopefully at the UP and DOWN buttons but to no avail. Matty and Sam looked down from on high and asked if we were stuck. We assured them it was only for a minute and their angelic little faces turned from mild anxiety to one of sensing an opportunity of freedom, so they headed for the cakes to bat their eyelashes at whoever had the misfortune to be in charge.
Meanwhile the inestimable Georgie Talbot and her husband John, joint artistic directors of the arts centre, leapt into action. John opened a panel high above us and he and colleagues turned some ratchety thing that very slowly lowered us back down to the ground floor.
Various people fiddled with the lift mechanism, trying to reset the wretched thing, but to no avail. Much to Georgie's consternation nothing worked and defeat was admitted. Her fury was heightened by the fact that the centre spends a fortune maintaining the thing and that it had been inspected only days previously. The show, however, had to go on. Fortunately, at that moment, my friend Bob arrived, and within seconds had come up with an action plan. He and I would retire to a local tavern for the duration.
By now the audience was arriving so Bob and I hung around to chat with those we knew, many of whom nodded sagely at the lift and regaled me with stories of the times it had broken down with them in it. Bob, who hates lifts and only ever goes in one with me when we go to the cinema because I can't reach buttons (and even then sort of clings spread to the wall with apparent nonchalance in case the floor drops away) swore he'd never set foot in the thing.
It was also a chance to catch up briefly with Susie, who among her many responsibilities at LAC was tonight manning the box office. Susie, a talented writer, who co-ordinates the centre's children's and youth Theatre Clubs, endures the agonizing condition Lupus, and we have worked together occasionally over the last decade or so, with Susie in particular refusing to compromise because of disability. She had written and was performing two monologues and so, eventually, left Bob and me in charge of the box office while she went to prepare. I later learned that Matty thought her 'growing up' monologue was wonderful.
Once Bob and I had escaped box office duty we made off around the corner for a drink and chat. It occurred to me Polly might want to escape during the interval and get the boys home and to bed so we didn't stay long. As it turned out her second piece was still to come so Bob nipped upstairs to video her performance for me.
Not exactly the evening I was anticipating, but not bad.
Until next time...
The Lantern Arts Centre is located within part of the building that is the monolithic Raynes Park Methodist Church in south London. Over the years it has evolved from an enthusiastically amateur underfunded enterprise into a slickly professional underfunded enterprise. On Friday nights they put on, or invite artists to perform, shows in their Café Studio, a smallish theatre on the 3rd floor. After much fund-raising and lobbying for grants, a few years ago they installed a lift (elevator) which finally made the centre fully accessible to all. The management at the Lantern Arts Centre are committed to inclusivity as is testified to by the huge range of shows and services they put on and provide in and around the local community.
I have ridden the lift to the Café Studio many times in the past, both as a performer and as a member of the audience, I don't have a particular fear of lifts, and this one is essentially a glass box with minimal claustrophobic potential, but even so, my heart rate goes up a little as the surprisingly fragile seeming glass door closes behind me and an electric motor starts to whine. We had sent the boys haring up the flights of stairs that created the stairwell through which the lift rose and Polly and I had entered the lift and closed the glass door behind us. Polly pushed down on the large UP button and held it down and the electric motor engaged. The tone of the electric motor was not that of a contented piece of machinery going about it's business of perpendicularly raising passengers forty or more feet into the air in a safe, reliable manner, but was rather that of a straining put-upon cantankerous piece of groaning mechanical misery. Some eighteen inches into our alarmingly juddery assent Polly removed her hand from the aforementioned UP button and we came to a halt.
People peered over banisters at the new exhibits and I wondered if they were expecting some kind of show. Then it came to me, I could be a mime trapped in a glass box! Polly pushed hopefully at the UP and DOWN buttons but to no avail. Matty and Sam looked down from on high and asked if we were stuck. We assured them it was only for a minute and their angelic little faces turned from mild anxiety to one of sensing an opportunity of freedom, so they headed for the cakes to bat their eyelashes at whoever had the misfortune to be in charge.
Meanwhile the inestimable Georgie Talbot and her husband John, joint artistic directors of the arts centre, leapt into action. John opened a panel high above us and he and colleagues turned some ratchety thing that very slowly lowered us back down to the ground floor.
Various people fiddled with the lift mechanism, trying to reset the wretched thing, but to no avail. Much to Georgie's consternation nothing worked and defeat was admitted. Her fury was heightened by the fact that the centre spends a fortune maintaining the thing and that it had been inspected only days previously. The show, however, had to go on. Fortunately, at that moment, my friend Bob arrived, and within seconds had come up with an action plan. He and I would retire to a local tavern for the duration.
By now the audience was arriving so Bob and I hung around to chat with those we knew, many of whom nodded sagely at the lift and regaled me with stories of the times it had broken down with them in it. Bob, who hates lifts and only ever goes in one with me when we go to the cinema because I can't reach buttons (and even then sort of clings spread to the wall with apparent nonchalance in case the floor drops away) swore he'd never set foot in the thing.
It was also a chance to catch up briefly with Susie, who among her many responsibilities at LAC was tonight manning the box office. Susie, a talented writer, who co-ordinates the centre's children's and youth Theatre Clubs, endures the agonizing condition Lupus, and we have worked together occasionally over the last decade or so, with Susie in particular refusing to compromise because of disability. She had written and was performing two monologues and so, eventually, left Bob and me in charge of the box office while she went to prepare. I later learned that Matty thought her 'growing up' monologue was wonderful.
Once Bob and I had escaped box office duty we made off around the corner for a drink and chat. It occurred to me Polly might want to escape during the interval and get the boys home and to bed so we didn't stay long. As it turned out her second piece was still to come so Bob nipped upstairs to video her performance for me.
Not exactly the evening I was anticipating, but not bad.
Until next time...
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.
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.
Sunday, 15 March 2009
Red Nosed Young Carer
If you live in the UK then you can hardly failed to have noticed that last Friday was Red Nose day. Countless people had their hair shaved off (like my friend Harvey) or went to work in their pyjamas, the England football team allowed themselves to be berated for failing to qualify for Euro '08 by a comedy actor for comic affect, and a disparate group of celebs scrambled and clawed their way up mount Kilimanjaro all in an attempt to do something 'funny for money'. The bi-annual telethon has raised in excess of £58,000,000 so far this year and there is almost certainly another 10 or 20 million to come, all in aid of good causes based here and in Africa.
As discussed in the Jerry Bashing post I have mixed feelings about telethons but generally speaking Red Nose day is exemplary, showing that with the right balance of entertainment and information the format works brilliantly. Red Nose day steers a remarkably steady course between evoking sympathy for the various causes and pointing the way to doing something about the problems. For example, your money buys X number of mosquito nets or supports this many workers at a special centre for junior carers. The documentary sections tell moving stories of desperate need but avoids mawkishness and over-sentimentality. The comedy has evolved over the years from rather self-indulgent and amateurish routines to sketches and pastiches of the highest order. (Well mostly.)
One of the good causes highlighted this year was a centre for children who act as carers for disabled family members. The mini-documentary told of a sighted young boy who cared for his blind parents. The young lad cooked and cleaned and did the family shopping without any apparent input from social services or home-care agencies and in his spare time he played selflessly with his disabled younger brother. The story (although surely not the whole one) was both moving and inspiring. Money raised by Red Nose day went to fund a centre where the boy and countless other young carers like him could receive support and, most importantly, have heaps of fun.
Acutely aware of our own situation Polly and I watched with Matty. Polly casually asked him how he felt about such a place. Matt, obviously taken with the fun and games on show, admitted that he'd enjoy visiting a centre like that. Polly cautiously probed further to see how much he identified with the young carers represented on screen. Matty sighed deeply and admitted he sympathised with the boy. “I am a young carer,” he told us solemnly. Polly glanced at me. “Sometimes,” Matty continued, oblivious to our anxiety, “I HAVE to play with Sam.”
“Oh,” said Polly, breathing out slowly. “So you don't feel like you need to go to a centre like the one on the television?”
“I'd like to,” sighed Matty, watching the fun the boy was having. Then he brightened. “I know. You could break Sam's legs! Or give him diabetes! I could go then.”
Sometimes you don't know whether to laugh or cry.
As discussed in the Jerry Bashing post I have mixed feelings about telethons but generally speaking Red Nose day is exemplary, showing that with the right balance of entertainment and information the format works brilliantly. Red Nose day steers a remarkably steady course between evoking sympathy for the various causes and pointing the way to doing something about the problems. For example, your money buys X number of mosquito nets or supports this many workers at a special centre for junior carers. The documentary sections tell moving stories of desperate need but avoids mawkishness and over-sentimentality. The comedy has evolved over the years from rather self-indulgent and amateurish routines to sketches and pastiches of the highest order. (Well mostly.)
One of the good causes highlighted this year was a centre for children who act as carers for disabled family members. The mini-documentary told of a sighted young boy who cared for his blind parents. The young lad cooked and cleaned and did the family shopping without any apparent input from social services or home-care agencies and in his spare time he played selflessly with his disabled younger brother. The story (although surely not the whole one) was both moving and inspiring. Money raised by Red Nose day went to fund a centre where the boy and countless other young carers like him could receive support and, most importantly, have heaps of fun.
Acutely aware of our own situation Polly and I watched with Matty. Polly casually asked him how he felt about such a place. Matt, obviously taken with the fun and games on show, admitted that he'd enjoy visiting a centre like that. Polly cautiously probed further to see how much he identified with the young carers represented on screen. Matty sighed deeply and admitted he sympathised with the boy. “I am a young carer,” he told us solemnly. Polly glanced at me. “Sometimes,” Matty continued, oblivious to our anxiety, “I HAVE to play with Sam.”
“Oh,” said Polly, breathing out slowly. “So you don't feel like you need to go to a centre like the one on the television?”
“I'd like to,” sighed Matty, watching the fun the boy was having. Then he brightened. “I know. You could break Sam's legs! Or give him diabetes! I could go then.”
Sometimes you don't know whether to laugh or cry.
Monday, 23 February 2009
The Rock God And Bassbin Cometh
It has been very busy weekend. On Saturday Paul and Darren (see previous blogs ad nauseum) pulled the straw from their hair and set off for the big city to visit me. Matty and Sam were delighted and immediately inveigled them in to taking them to the park to play football. The goal posts were occupied so Matty marked out a pitch between two lots of trees. As a result the four of them ended up having a two-aside match on a pitch roughly the size of Wembley. Both of my friends children are well past the age of going for a kick around in the local park so they were out of practice, and by 3 – 3 were well out of breath as well. With them wheezing and a disturbing shade of red we moved on to the park café where the boys assured Paul that Mummy always lets them have double scoops of chocolate ice cream.
Later, after they had recovered, Polly casually mentioned she was thinking of moving a couple of things around in the living room. Like the gentlemen they are, Paul and Darren offered to help. It was at this point they learned that the small task entailed moving a sideboard and two fully laden bookcases double lined with books. Oh, and a fish tank.
No wonder the guys were grateful to sit down to a meal of Polly's beef stew with cheesy dumplings and mashed potato. It was the least we could offer them after their sterling efforts. Matty and Sam can't wait for them to come again. Matty reckons that if he asks Paul nicely he can be persuaded to buy him a motorbike and Sam's holding out for a tattoo. I was sad to see them leave, not least because I always feel safer knowing exactly where they are.
'Til next time, guys.
Later, after they had recovered, Polly casually mentioned she was thinking of moving a couple of things around in the living room. Like the gentlemen they are, Paul and Darren offered to help. It was at this point they learned that the small task entailed moving a sideboard and two fully laden bookcases double lined with books. Oh, and a fish tank.
No wonder the guys were grateful to sit down to a meal of Polly's beef stew with cheesy dumplings and mashed potato. It was the least we could offer them after their sterling efforts. Matty and Sam can't wait for them to come again. Matty reckons that if he asks Paul nicely he can be persuaded to buy him a motorbike and Sam's holding out for a tattoo. I was sad to see them leave, not least because I always feel safer knowing exactly where they are.
'Til next time, guys.
Saturday, 21 February 2009
Hand Fed
Yesterday afternoon I went to the cinema with my friend Stewart. We went to see Push, a film about group of people with 'special' abilities, including telekinesis, psychometry and seeing into the future (precognition). I hadn't seen any publicity about the film so didn't know what to expect. What we got was cleverly plotted, well acted (Dakota Fanning is especially good), and confusingly exciting story with some great set-piece special-effects. The film ends on a cliffhanger so I presume a sequel is on the Zener cards.
After the film was over, Stewart and I went to get a burger and have a chat. We ended up in Burger King where we both ordered Bacon Double Cheese Burgers. I tell you this mind numbingly banal detail because of what happened next. Try as I might I was unable to raise the burger to my mouth. I had chosen the Bacon Double Cheese Burger because it is not stuffed full of lettuce, tomato and various drippy, sticky sauces destined to fall out of the burger and down my jumper. Even so it remained resolutely unpickupable, let alone eatable. I tried a French-fry instead. By pushing my right elbow awkwardly into the corner of the table and twisting by body like an arthritic contortionist I managed to get the tip of the longest one between my lips and was able to suck it into my mouth like a strand of chippy spaghetti. So far so good; 1 French-fry = 1 minute. It was a good job Burger King stays open 'til late.
Fortunately Stewart understood my predicament and casually offered to help. Torn between the humiliation of being fed in public and going hungry I went with humiliation. Pride goes out the door when you've skipped lunch. Stewart held up the burger while I nibbled at it like a donkey at a petting zoo.
In case you think I'm wallowing self pity I'd like to say in my defence that this was the first time I'd been fed in public by anyone other than Polly. It couldn't have happened with a nicer person than Stewart who acted as if it were the most natural thing in the world to hand feed your friend in a public restaurant, but it does mark yet another stepping stone in the deterioration of my condition. On the plus side, I didn't go hungry and nobody in Burger King objected or even appeared to notice.
So, thanks Stewart.
After the film was over, Stewart and I went to get a burger and have a chat. We ended up in Burger King where we both ordered Bacon Double Cheese Burgers. I tell you this mind numbingly banal detail because of what happened next. Try as I might I was unable to raise the burger to my mouth. I had chosen the Bacon Double Cheese Burger because it is not stuffed full of lettuce, tomato and various drippy, sticky sauces destined to fall out of the burger and down my jumper. Even so it remained resolutely unpickupable, let alone eatable. I tried a French-fry instead. By pushing my right elbow awkwardly into the corner of the table and twisting by body like an arthritic contortionist I managed to get the tip of the longest one between my lips and was able to suck it into my mouth like a strand of chippy spaghetti. So far so good; 1 French-fry = 1 minute. It was a good job Burger King stays open 'til late.
Fortunately Stewart understood my predicament and casually offered to help. Torn between the humiliation of being fed in public and going hungry I went with humiliation. Pride goes out the door when you've skipped lunch. Stewart held up the burger while I nibbled at it like a donkey at a petting zoo.
In case you think I'm wallowing self pity I'd like to say in my defence that this was the first time I'd been fed in public by anyone other than Polly. It couldn't have happened with a nicer person than Stewart who acted as if it were the most natural thing in the world to hand feed your friend in a public restaurant, but it does mark yet another stepping stone in the deterioration of my condition. On the plus side, I didn't go hungry and nobody in Burger King objected or even appeared to notice.
So, thanks Stewart.
Tuesday, 10 February 2009
Guest Blog by Paul 'Rock God' Loader
For the first time ever How To Be An Inspiration has a guest blogger. Paul 'Rock God' Loader, wrote to me, and showing uncharacteristic sensitivity, asked me if I would approve a post he had penned for his own (highly enjoyable) blog How To Be A Bonafide Rock God. Paul has been mentioned in this blog on many occasions because he, along with Darren 'Bassbin' Williams, is one of my oldest friends. His post, as you will read, is about his childhood perceptions of me. It seemed silly not to steal the post and put it here.
The opinions and memories are Paul's but they generally accord with my own. Perhaps after reading it you will understand a little of why he remains, after some 40 years, one of my most cherished friends. I've inserted a few comments along the way for clarifications sake, but otherwise, in his own occasionally eccentric syntax (God, I'm a patronizing git), here is the stuff memories are made of...
The Adventures of 'Wheelchair Man' and his trusty sidekicks 'The Preachers Kid' & 'Bassbin'
I wonder if you might allow me a small indulgence, and let me write about something that has absolutely nothing to do with music.
I was inspired to begin writing this blog by a very good friend of mine, Stephen, who goes under the blog name of ‘Quicksketch’.
Now I know that there are a fair few of you that read my simple scribblings because they stumbled across Stephen’s blog “How to be an inspiration” first.
For those that don’t know Steve’s blog is about the day to day frustrations, joys and restrictions of suffering with a degenerative condition called Muscular Dystrophy.
However, Steve is by no means a ‘moaner’ (his wife Polly of course reserves the right to disagree with this entirely) and his blog is often down right hilarious and I would heartily recommend it to you.
However, my point for writing about Steve is this, the blog is essentially about his condition and the day to day struggle he has to endure. However for myself and my good buddy Bassbin (Darren) we still don’t see the wheelchair, and the hassle that Steve has to endure to even eat and sleep these days.
We still see the child, teenager and young man that grew up with us. Dignified, funny, good natured, thoughtful and a good friend.
When I was 9 years old, my father upped the family, dragging us kicking and screaming away from friends, school and familiar surroundings and moved us to a house closer to the church where he was pastor.
In this myself and my siblings had to go to a new school and I was introduced to my new class mates. Two lads in particular were given the task of integrating the newbie. Darren and Steve.
Now I’m not quite sure why those two were particularly chosen for this task, maybe it was thought that they would be the least likely to make this new kid cry. Perhaps it was felt that they would be the least likely to lead me into ‘Disaster’.
Either way, but for a twist of fate, my new best friends could have been Ricky Hartree and Andrew Scully. I don’t know what my future would have held, but I certainly would have been in the company of more girls that was for sure.
However, at the same point in history, when Man first set foot on the moon, I made two new friends that would help to sculpt my life, and I believe they did it in a very positive way indeed.
As with all of us in those days, both boys, like me, were skinny and scruffy and full of life.
I can’t remember at what point it was mentioned that Steve has Muscular Dystrophy, but I believe it was almost immediately. No big deal was made, I didn’t have a clue what it was for Pete sake, and to be honest it didn’t really matter. I was now being initiated into the ‘Whitchurch Wanders’ and a total acceptance of the MD and Steve as a founding member of that tribe was a prerequisite to belonging and his condition was virtually never mentioned again until relatively recently.
It wasn’t that it was ignored, as if a shameful thing was being suppressed and buried, it just never factored.
Steve’s dad, Roger, held a place of power and place in our young lives. He was the leader of the local ‘Cub scout’ group, of which all three of us became members. He went under the moniker of ‘Arkala’ and he scared the crap out of myself and Darren. However, he held an immense amount of respect from both of us, and I believe, from what has been revealed to us later, he was rather fond of us.
This is true. Dad genuinely like both of them and was amused by their antics. I think he was glad I had fallen in with 'good lads'. Even when they were well into their 30`s, with families of their own, if they arrived at the house he would greet them with “Ah, the “young people” are here.” They would snap back in unison with “Arkala, we will do our best.”
The Cubs were and I suppose are, a great institution. Although it was a hell of a lot more fun back in the days before the oppression of health & safety had got a hold of us. We got taught to light fires, use knives, sleep in DIY shelters and got told stories in gory detail of what can happen if you do stupid things with your sheaf knife.
Roger, like two of his sons, also had the condition Muscular Dystrophy, so he probably knew more about was in store for his lads than perhaps they did. As far as I can remember though he didn’t do his oldest boy any special favours, Steve was treated like the rest of us, although I do remember more badges appearing on Steve’s uniform than Darren and I could both muster together. If I remember rightly there were a few grumblings of ‘fix’ being banded about.
This is laughable. If anything Dad made it harder for me to earn badges. I got more simply because I was a little boy who wanted to please his father.
However, as with all of our dealings with Steve, the suggestion that he might have been given a break because of his MD didn’t even occur to us (the fact that he has always applied himself a bit more enthusiastically also didn’t occur to us either and that he had simply ‘earned’ more badges than us).
It was during these heady days of cubs that Steve’s condition did start to become more apparent and also evidence of its debilitating effects on him became more noticeable. It was during the ‘swimming badge’ that Steve was unable to perform all the tasks set for him (neither could I, so it didn’t really seem to matter). However for Steve, it wasn’t matter of ability, he physically couldn’t do.
But again, Darren’s and my attitude was ‘Hey ho…no worries’.
It was at this point Darren and I began to show early signs that we could make complete idiots of ourselves when the occasion required, usually with Steve standing behind us shaking his head in despair. We both nearly got sent home from a cub camp when we got ourselves into a full blown fist fight over…..a woggle!! (that’s the thing that you tied your neckerchief up with incidentally). Don’t ask me what it was about, but I remember that it was pretty heated.
These heady days continued until I was asked to leave on account that I was now the oldest cub in Bristol, and a full year older than I was supposed to be. I didn’t last very long in scouts (I don’t think that Darren and Steve even got that far… the cubs were our moment of glory).
When we reached the age of 11 or 12 (I was a full 10 months older than the other two so I have always been considered ‘the old man’ of the out fit. Great when you are 12….pants when you are in your 40’s.) we were introduced to our new secondary school, Hartcliffe Comprehensive School, the most frightening institution on God’s green Earth.
Hartcliffe at that time was one of the biggest schools in the country and it certainly had one of the worst reputations for brutality…both from students and staff.
Steve’s ability to move had begun to slow somewhat, but it didn’t matter, we all walked slower in way of unmentioned, unsolicited compensation (some habits die hard I have discovered). His facial expressions also began to suggest that the muscles weren’t as strong as they used to be. However, we all looked liked train wrecks from Pizza Hut in those days so it didn’t matter.
Steve’s recollection may be better than mine, but I don’t recollect him getting a particularly hard time from the other kids, which is remarkable given the age of the kids that were repulsed by even the slightest of differences.
He may have been getting some stick but to be honest I was too busy wrapped up in my own misery. As I said, my father was pastor of the local church and he used to come into our school to take our assemblies. This was like manna from heaven for my class mates in terms of Mickey taking. I would be followed around by groups of kids, monk like in mock prayer as they trailed ‘The preacher’s kid’ around the play ground.
I cannot illustrate how painful and humiliating that was for me, which is daft considering as I look back on it now most of the kids were very fond of my dad, and I have since become extremely proud of the nickname ‘The preachers kid’. Strange how we grow.
As with all our journey together, Steve was not offered any special dispensation by his growing army of mates, although instinctive allowances were made for Steve’s reducing physical prowess, however, to draw attention to it would have been tantamount to an insult.
However, some of the staff weren’t quite so open minded when it came to being over protective of the ‘disabled boy’.
Mr Owen was a maths teacher, and I believe he was a ruddy psychopath. Even the staff were terrified of him.
I remember making the stupid mistake of treating Steve like any other kid in one of Owen’s lessons. I leant over a desk and cuffed Steve around the back of the head (that’s the sort of things mates do to each ….it’s a male thing apparently).
I had not realised that my ‘torturous act upon this helpless young cripple’ had been observed by the Ogre of class 4B and with a roar of fury he launched himself across the classroom towards me. I was wrenched from seat by my jacket lapels, and had to suffer a torrent of venomous abuse on the subject of being unkind to those less fortunate than ourselves, and then unceremoniously I was flung across three or four desks to crash into a crumbled heap in the corner of the room.
Steve simply wet himself laughing.
I did not! Urinary incontinence wasn't a problem until much later.
Steve and I did suffer at the hands of a couple of Neanderthal thugs who managed to sit with us in our science class. However, our pleas for assistance to our form tutor (something they encourage children to do nowadays), was met with “You are bigger than then…..beat them up”. I was “The Preachers Kid” I didn’t do ‘beating up’, and even back then Steve was becoming a man of learning and not a boxer.
Still, I suppose the only satisfaction I can muster is the pair of them are probably due for parole at some point in the near future (not a very Christian day dream I grant you….but stuff it!).
Actually we did deal with them eventually. Their particular form of bullying was mostly to subject us to a stream of obscene verbal abuse. One day we simply asked them to explain exactly what each word meant. They got a bit fed up of having to describe various deviant practises in minute detail, especially when they realised they didn't understand them themselves.
For those of you who have been reading this blog regularly, you will already be aware of what happened when Steve, myself and Darren first began to dabble in music with my blog “My tone deaf mate”.
By the time we reached the sixth form (before, both Darren and I were asked to leave), Steve had begun to circulate in a more learned circle than that offered by Darren and myself (we only had ourselves to blame really, the draw of listening to the Sex Pistols at Darren’s house had a greater draw than attending English Literature lessons I can tell you).
So by 1979 we began to go our separate ways as Darren and I got our first jobs and I had the opportunity to travel a bit with a band, and Steve eventually went off to London to University, became a successful and talented playwright. Co-wrote a best selling no 1 record, got married and had kids.
We never really lost contact, however it has really been more in the last few years that we ‘picked up where we left off’.
The reason for my walk down memory lane is this. I have worked with disabled people from time to time during my working life, and I found this to be hard work, and often rewarding, I have even occasionally found it to be an honour.
However, I have never seen Steve in that light.
I can honestly say that as hard as it has become for him in recent years I still do not see the wheel chair.
To me he is a mate, pure and simple. A good mate who has helped put several huge dollops of paint onto the canvas of my life. A mate that has succeeded in life and has contributed to the arena that he travelled in.
He married a beautiful (and patient) women and they have two very lively, intelligent boys that do their parents proud.
Steve was and is far more than that ‘disabled boy’ that refused to get drawn into the ‘ah, bless him’ space (no matter how hard our mothers tried)
I suppose what I am trying to say is, the next time you run into somebody who is being pushed along in the wheelchair……don’t just see the chair…there is a history sat there. A history of a vibrant human being…that has mates…like me and Bassbin... just try to resist the temptation to cuff him around the back of the head… Mr Owen could be near by.
Saturday, 7 February 2009
25 Random Things About Me
My friend Sheryl tagged me in one of those interminable things that float around social networking sites like Facebook. Usually such things involve 'poking' and 'hugging' and sending each other plants or snowballs or beer and I don't understand them so I have a backlog of several hundred because I don't know how to stop them and I don't want to offend anyone. This one seemed fairly straightforward though, and I like Sheryl, so I did it. I simply had to write 25 random things about me. So I did. Then I realised I could post them here as well. So I did. Here they are.
25 Random Things About Me
1.
My middle name is Harry.
2.
I once had a Red Setter called Lara
3.
I went to Hartcliffe Comprehensive School.
4.
I drink coffee. Roasted coffee beans are my favourite smell.
5.
I have 2 Ivor Novello awards.
6.
I have FSH Muscular Dystrophy.
7.
I read a lot of books.
8.
I hate rhubarb and gooseberries.
9.
I can't stand getting cold.
10.
I write a blog called How To Be An Inspiration.
11.
My first girlfriend was Elaine Wentworth. We were five and it lasted over two years.
12.
My first love was... someone else.
13.
I used to be very good at making bread.
14.
Kirsty MacColl was the best.
15.
I won a silver teaspoon in a beautiful baby competition.
16.
I rank in the top 2% of the nation at General Knowledge (according to the BBC's Test the Nation).
17.
I would love to see a whale.
18.
My favourite author is Christopher Brookmyre.
19.
My first car was a red Mini reg KY55C.
20.
As a boy my favourite comic was called The Sparky.
21.
I could never do the Rubiks Cube although I was among the first to have one in the country.
22.
I love superhero comics.
23.
I tell my children Wheelchair Man bedtime stories.
24.
My first memory is of sitting in my highchair in the kitchen of 3 Krispin Way, Bristol. There were fruit and vegetables on the wallpaper.
25.
My favourite confectionery is Turkish Delight.
If you would like to comment on this post please accompany it with at least 3 random things about you!
25 Random Things About Me
1.
My middle name is Harry.
2.
I once had a Red Setter called Lara
3.
I went to Hartcliffe Comprehensive School.
4.
I drink coffee. Roasted coffee beans are my favourite smell.
5.
I have 2 Ivor Novello awards.
6.
I have FSH Muscular Dystrophy.
7.
I read a lot of books.
8.
I hate rhubarb and gooseberries.
9.
I can't stand getting cold.
10.
I write a blog called How To Be An Inspiration.
11.
My first girlfriend was Elaine Wentworth. We were five and it lasted over two years.
12.
My first love was... someone else.
13.
I used to be very good at making bread.
14.
Kirsty MacColl was the best.
15.
I won a silver teaspoon in a beautiful baby competition.
16.
I rank in the top 2% of the nation at General Knowledge (according to the BBC's Test the Nation).
17.
I would love to see a whale.
18.
My favourite author is Christopher Brookmyre.
19.
My first car was a red Mini reg KY55C.
20.
As a boy my favourite comic was called The Sparky.
21.
I could never do the Rubiks Cube although I was among the first to have one in the country.
22.
I love superhero comics.
23.
I tell my children Wheelchair Man bedtime stories.
24.
My first memory is of sitting in my highchair in the kitchen of 3 Krispin Way, Bristol. There were fruit and vegetables on the wallpaper.
25.
My favourite confectionery is Turkish Delight.
If you would like to comment on this post please accompany it with at least 3 random things about you!
Monday, 2 February 2009
The Holy Handkerchief
You will probably have surmised by now that I have a certain degree of cynicism regarding the whole spiritual healing malarkey. (A hint may be me using words like malarkey.) Why, you may be wondering, have I dedicated some 5000 words to the subject?
A few weeks ago I received an email from Barefoot Brian telling of an experience he had had at a meeting in Dudley (in the UK). Brian had been at a meeting led by speaker Marc Dupont, a guy who had been heavily involved with the whole Toronto Blessing phenomena of a few years back. During the course of the meeting Brian felt strongly led to pray for me and get a piece of cloth blessed for me with healing in mind. As it happened Brian had a clean hanky on him and after a bit of 'should he, shouldn't he`, he succeeded in tracking down Marc Dupont and (in Brian's telling) virtually forced the poor, exhausted man to pray over it. He wrote to ask me if I would receive this 'holy hanky` in the spirit it was intended, and asked “Do you want to be healed?”
As you might imagine this left me with something of a dilemma. You now know my history (or some of it) with such things and the idea of a 'prayer handkerchief`, particularly the light of the Duane Falcello monologue, made me smile. However, I like and respect Brian. I'm known him for 30 years, from a time when we both helped run Christian youth camps at Hill House in Somerset. Although on the charismatic/evangelical wing of the church, Brian falls well within the bell-curve of normality for Christians as a whole, and is someone whose judgement I'd trust. So first, let's answer the question he asked: do I want to be healed?
Yes. Not because I don't value who I am, or appreciate how my disability has shaped my personality and what I've done and achieved in my life. I don't wish I'd never been born with Muscular Dystrophy because without it I would never have done the things I've done, met the people I've met, or had the children I've had. Dystrophy has been both a curse and a blessing for me But if someone (God?) could snap their cosmic fingers and relieve me of its burden, restoring the strength to my limbs, I'd forsake the advantages of a Blue Badge in a second. I'm tired of being tired, tired of aching and tired of feeling helpless to stop the further slide in my condition. So yes, I'd like very much to be healed. That said...
Do I believe God can heal me? Short answer: no. Longer answer: may be, it depends what you mean by healed.
Do I believe that an entity capable of creating a universe, establishing the laws of physics so that M=MC2, micro-manages his creation to such an extent that he would physically alter my DNA to bring about a cure for a congenital condition? And that if he did, he would focus his attention on me, rather than the countless other suffering souls in his creation? Would a supreme being, who could with a mere thought banish the spectre of, say, AIDS from the planet by making a minute alteration to a simple virus, rather turn his attention on me, a relatively wealthy (compared to many on this planet) individual. What kind of ego would I need to believe that? But supposing he did. Suppose this omniscient being healed me, would that be a sign of love or a slap in the face for the countless millions of faithful Christians who, through out the ages, prayed for similar blessings and not been heard? Why me and not them? Would God be so arbitrary?
I have a friend, Karen, who I've mentioned in this blog before, and to whom I owe a great debt, for it was she who introduced me to Polly, all those years ago. Karen, and her husband Gareth, have three children, the youngest, Tristan, was born within a couple of weeks of my eldest, Matty. Tristan, for no apparent reason, was born devastatingly handicapped. At nearly 9 years old he can not feed himself, nor sit unsupported. He will never walk and will forever be utterly dependent on those who love him. Fortunately there are many who do. Tristan is a beautiful boy. He has black hair and amazing eyes with lashes to die for. He sits engrossed for hours with something as simple as a tiny red plastic tennis racket. When I last saw him he was entranced with the lights on the controller of my wheelchair, gurgling with happiness when I made them flash. How could I expect God to heal me and not Tristan? And if he does, then what about my brother, or Blake or Dani or many others reading this? Why should God heal one but leave others untouched? Surely if God has the power to heal then no amount of theological sophistry can justify him healing me over Tristan, hankies not withstanding.
So Brian has wasted his time and his neatly folded square of cotton. Or has he? The first consequence of Brian's act of faith has been this series of posts, and the thousands of people who have read them and been inspired to consider their position on the subject. I, myself, have been forced to think about things I'd long ago put aside. What about the testimony of those with tales of divine healing, what am I to make of those? Rock God's mothers prayer for the healing of a blind friend? Tigger35's experience with autism? And many others known to us individually. The problem, as I see it, is that anecdotal evidence is not truly evidence, however sincere the source. Many of us have heard stories of miraculous healing that defy rational explanation often from impeccable sources. Unfortunately none of them are absolutely verifiable. I've looked for a verifiable account of a miracle healing of a genetic condition like Muscular Dystrophy, believe me, I've looked. It has NEVER happened. If you show me one accredited account, I'll show you a thousand doctors and scientists who doubt it.
But who is to say God has to act in a supernatural manner? If not for the 'miracle' of Penicillin and its anti-bacterial descendants I would long ago have died of pneumonia. Even as I write this I am looking at technological solutions to some of the problems I'm having. The probability is that with the right help my life can be greatly enhanced. Brian and his hanky have directly inspired me to talk openly and frankly about spiritual matters both online and in real life. I've had to confront some uncomfortable truths regarding my relationship with a deity who it sometimes seems to have abandoned me. (Or me him. We're still arguing about the details.)
I have just learned that Brian himself has very recently gone through a serious medical emergency requiring your actual brain surgery. He reports that he is well on the mend I'm glad to say. Did God heal Brian? Well he didn't wag his celestial finger and dissolve the subdural haematoma. Rather Brian was able to access the more statistically reliable NHS and have high quality non-supernatural treatment. Does this mean God was nowhere in this situation? Of course not. Brian, I imagine, credits God with putting all the, doctors, nurses, CT scan operators, and so on in place. And I can not dismiss this as a possibility. It truly is a matter of faith.
By now all my Christian friends, of whom I have many, are sadly rubbing my name out of the Book of Life. But wait! Put away your metaphorical erasures and read on.
I can not quite write God out of my life for one reason. I know his people. For 35 years the church has been part of my life. And despite the odd Morris and strange person who insists on accosting me in public and laying hands on me, they are for the greatest part, wonderful people. Many of the best, most exciting things I've done in my life have been done with, or facilitated by, my brothers and sisters in the church. When I have been at my lowest or sickest, alongside my immediate family, it is my Church family that has been with me. At a time when I hovered between life and death I know that thousands of Christians held me in their thoughts and prayers. The church has often employed me, frequently to poke gentle fun at its beliefs and rituals. And even when the logistics have been massively complicated by inviting me a long, Christian organisations have still taken me to every corner of the country, from Shetland to the Channel Islands.
While I make no claim that Christians have a monopoly on caring, it is my experience that those I know are among the kindest and must loving people you could wish to meet. If the church is the body of Christ then it is my opinion that Christ is worth knowing. While I have reservations about some kind divine plan, that one day will be revealed to me, I make no pretence to understand the mind of God. May be there is a plan. It seems unlikely on the evidence I've observed and experienced but if there is it had better be one heck of a good one to justify all that has gone on. But I'll let others worry about that.
So, to Brian and all my Christian friends, thank you. Thank you for praying and for caring. The very fact you do so gives me hope and lightens the load. And for those reading who take no comfort in divine providence, all I can suggest is that you, like me, look to your friends, your neighbours and your families for that divine spark.
In the meantime, the hanky is in my medicine box. Make of that what you will.
That's the end of this series of posts. Thank you for reading. Comments and discussion welcome. Good bye and keep warm.
Wednesday, 10 December 2008
Bring On The Girls
By early 1981 I was signed off work at the Civil Service, in a fair degree of pain as the muscles in my back wasted, unable to walk more than 50 metres at a time, and lacking any direction in life. But on the plus side I could drive. It was the single greatest pleasure of my life. I would go for long drives simply because I could. I enjoyed a sense freedom that I could not achieve in any other way.
Aside from the previously mentioned friends, Paul, Jay and Darren, I was also spending time with others; those ineffably mysterious, bewildering and contradictory creatures, girls. From the safety of a quarter of a century, a happy marriage and two children later I look back on what was at times a confusing experience with a wry smile, and in case any are reading this, a definite fondness. Having always gone to co-ed schools girls had always been part of my life, albeit a particularly mystifying part. As far as the girls at school were concerned there may as well have been a perspex wall between me and them, such was their unattainability. Fortunately the church youth group provided at least the theoretical possibility of social contact. My first girlfriend, when I was 13, was a girl from an associated youth group from the other side of the city called Jackie. Jackie was small, blonde and disturbingly curvaceous. We would meet in town and hold hands while wandering around the shops. I bought her a necklace for her 14th birthday. The relationship lasted a little over 5 weeks during which time we grew apart. Had I known the dearth of relationships I was about to enter into I may well have made more of an effort, but truthfully she scared me.
Years later my ability to drive and the fact I had my own car increased the opportunities I had to interact with the female of the species. Unfortunately it coincided with the significant deterioration in the MD which undermined any burgeoning self-confidence I might have felt. The growing obviousness of my disability and the almost palpable sense of desperation I must have exuded limited my potential as boyfriend material and I entered in to a series of 'nearly' relationships.
In amongst all this hormonal mayhem I did strike it lucky, if not romantically, with a couple of girls who have since gone on to become life long friends. During my time off work from the Civil Service I would often meet up for lunch with a girl who had been at both my school and my church. Michelle was a lot of fun to be with during a difficult time while I struggled to find some direction for my life. It was nice to have an attractive friend to just hang out with (as opposed to my not so attractive male friends) and I both appreciated and enjoyed her company. And, on the off chance you are reading this Michelle, it's your turn to write.
(And yes, Jacq, you were the other one.)
Pleasant though spending time with friends was, and despite the uncertainties pertaining to my physical condition in the future, I knew I had to move on. It was time to go back to education. I applied to Southlands College, part of the Roehampton Institute, which at the time had its degrees validated by the University of London and was set along side the common in Wimbledon, to read for a combined studies Bachelors Degree in Psychology and Religious Studies. It was a decision that transformed my life and took me in a whole new direction.
Aside from the previously mentioned friends, Paul, Jay and Darren, I was also spending time with others; those ineffably mysterious, bewildering and contradictory creatures, girls. From the safety of a quarter of a century, a happy marriage and two children later I look back on what was at times a confusing experience with a wry smile, and in case any are reading this, a definite fondness. Having always gone to co-ed schools girls had always been part of my life, albeit a particularly mystifying part. As far as the girls at school were concerned there may as well have been a perspex wall between me and them, such was their unattainability. Fortunately the church youth group provided at least the theoretical possibility of social contact. My first girlfriend, when I was 13, was a girl from an associated youth group from the other side of the city called Jackie. Jackie was small, blonde and disturbingly curvaceous. We would meet in town and hold hands while wandering around the shops. I bought her a necklace for her 14th birthday. The relationship lasted a little over 5 weeks during which time we grew apart. Had I known the dearth of relationships I was about to enter into I may well have made more of an effort, but truthfully she scared me.
Years later my ability to drive and the fact I had my own car increased the opportunities I had to interact with the female of the species. Unfortunately it coincided with the significant deterioration in the MD which undermined any burgeoning self-confidence I might have felt. The growing obviousness of my disability and the almost palpable sense of desperation I must have exuded limited my potential as boyfriend material and I entered in to a series of 'nearly' relationships.
In amongst all this hormonal mayhem I did strike it lucky, if not romantically, with a couple of girls who have since gone on to become life long friends. During my time off work from the Civil Service I would often meet up for lunch with a girl who had been at both my school and my church. Michelle was a lot of fun to be with during a difficult time while I struggled to find some direction for my life. It was nice to have an attractive friend to just hang out with (as opposed to my not so attractive male friends) and I both appreciated and enjoyed her company. And, on the off chance you are reading this Michelle, it's your turn to write.
(And yes, Jacq, you were the other one.)
Pleasant though spending time with friends was, and despite the uncertainties pertaining to my physical condition in the future, I knew I had to move on. It was time to go back to education. I applied to Southlands College, part of the Roehampton Institute, which at the time had its degrees validated by the University of London and was set along side the common in Wimbledon, to read for a combined studies Bachelors Degree in Psychology and Religious Studies. It was a decision that transformed my life and took me in a whole new direction.
Monday, 8 December 2008
A Civil Servant
I joined the civil service in late October 1979. After the Youth Opportunity Programme sponsored make work employment at the Fire Brigade this was my first proper job. I entered on the lowest rung of the ladder as a Clerical Assistant, there were cleaners with more authority than me in the South West Regional Office of the Manpower Services Commission. I spent my days writing out Giro cheques for, ironically, people on YOP schemes all over the west country. It was an open plan office, where we sat in little clusters of desks, wreathed in cigarette smoke, and overseen by a young man called Brian.
Brian's real interest in life was women's hockey, which tells you everything you need to know about him. He passed the time between matches by micro-managing every aspect of Giro writing, and particularly mine, with the kind of anal-retentiveness that makes for a good junior civil servant and, presumably, a great women's hockey coach.
My colleagues were a nice enough bunch of mostly middle-aged women who chain-smoked through out the day and seemed to talk about nothing other than various operations they had had, and a number of younger women with unfathomably complicated love lives. Towards the end of each day we would stuff the Giro cheques into envelopes, ensuring that the hand written addresses were visible in the little transparent windows, and stick a postage stamp on it. (In the top right corner. You see, I hadn't forgotten my life skills training from earlier in the summer. (See In The Summer Of '79)). After several months of this daily routine we received a franking machine which did away with the need to lick stamps.
Being the most junior of junior civil servants meant I was not required to think. So to compensate I wrote scurrilous articles for a very unofficial office newsletter which was pinned to the notice board secretly during lunch breaks. But the best thing about the job was that it made absolutely no demands on my spare time. This was good because I was happily involved with helping to run the youth group at the church, and since learning to drive was in a position to mcct up with friends like Darren, who at the time was, for some reason, living in Cheddar (where the cheese comes from), and Jay who had dropped out of University and was kicking around like me.
For a while Jay and I shared a house that was so cold that the only way to stop the milk from freezing was to put it in the fridge. As a result we would often eat out, visiting a series of restaurants on a regular basis. Paul joined us for a few weeks but sensibly decided it was too cold and went back to the warmth of his parent's house. Eventually our landlord sold the house and I went back to live at home. Jay moved into the first of a series of bcdsits where I would visit him and from which we would continue visiting restaurants on rotation. All the while I was finding walking more difficult and was in near constant pain as the muscles in my back weakened. My car, a white Mini, was the saving grace, giving me freedom to move around the city, freeing me from walking distances and waiting for busses.
The highlight of each working day came when I got to sit at the newly acquired franking machine and, while feeding envelopes through one at a time, got to enjoy the panoramic view of Bristol from the 5th floor office window. I would watch seagulls wheeling beneath me and the comings and goings of the busy city centre. It was my 20 minutes of mindless relief from the hand-cramping Giro writing. But then, one day Brian looked in the staff manual and realised that a lowly Clerical Assistant was too junior a creature to operate such important equipment. I was relegated back to sealing envelopes. Enough was enough. I determined to make my escape. But escape to where?
Then, one day in early 1981, I found I could barely walk from my car to the office anymore. My back was in excruciating pain. A doctor signed me off work and warned me it would never get better. I quit the Civil Service and swore never, ever to work in an office again.
Wednesday, 26 November 2008
I feel Fine(ish)
Throughout my teens my disability was more an annoyance than a source of pain. It slowed me down rather than stopping me doing things. There were many occasions when it inconvenienced me or caused me some level of distress but largely it was something to be worked around rather than an immovable barrier to getting on with life.
Muscular Dystrophy does not in itself hurt. The gradual break down of the muscles is painless but as the muscles weaken the remaining ones are forced to compensate and that can hurt. I say this with some feeling as I have recently pulled the muscles around my left shoulder whilst performing that inherently dangerous procedure, flushing the lavatory, and the excruciating pain is beginning to impact on my usually sunny nature. But back in my teens pain was not the issue, fatigue was.
I went to a school on the edge of Bristol, Hartcliffe Comprehensive, half a mile from my home. In 1972, when I arrived, aged 11, Hartcliffe was reckoned to be the 3rd or 4th largest school in the country with more than 2,400 pupils. The school consisted of two huge buildings, a quarter of a mile apart on a 5 acre site. The two buildings were labelled with staggering imagination East and West. It was perfectly possible to have a French lesson on G floor, the top of the East building, follow by an English lesson on C floor, the top of the West building. A generous 5 minutes was allowed for transition between lessons. You can imagine the scene as the first bell rang and nearly two and a half thousand pupils raced to their next classroom. You can also imagine some vindictive teachers over running their lesson whilst others demanded to start theirs bang on time. To avoid total chaos one-way systems were introduced meaning that sometimes you couldn't even take the shortest route. The process was repeated up to 5 times a day.
There are many tales I can (and no doubt will) tell about my school days but here I am writing about how it felt to have MD in such a situation. Over the 7 years of my secondary education my condition deteriorated relatively little compared to what was to come later. During the early years I could still run (albeit slowly) and had to partake in PE lessons, including Rugby. I felt very self-conscious, aware of my puny physique, and went to some lengths to avoid communal showers. A good game of rugby for me was one from which I left the field completely mud free (difficult in an English winter) and without having broken sweat (easy in an English winter). I felt different but I didn't feel excluded. I had good friends.
I wasn't particularly bullied at school. This was for a number of reasons, not least the aforementioned friends. One of our group was a fellow called 'Birdy', who came from a huge and somewhat notorious clan. Upsetting Birdy by bullying his friends could prove catastrophic to a would-be thug. Think Nelson Mudd with a west-country accent, more charm and about 10. . . er. . . 'free-spirited` brothers. I also cultivated an air of mediocrity. Standing out in such an environment was rarely a good idea and I was already different enough. Over the years I developed a distinctive leg flicking gait and an inward curvature of the spine. As my facial muscles weakened my face became less expressive, which many teachers took to be a blankness and lack of comprehension, and I used this to fade into the background. I very much doubt that any of my teachers remembered me two years after I left the school.
By the time 1 reached the 6th form walking to and from school was an exhausting challenge each day. Getting an education was a fairly low priority by that time. I remember having a crisis of confidence; wondering what I was going to do next; what, literally, was going to become of me. I put off applying to Universities and half-heartedly looked for a job. I could feel myself at a tipping point. Up until now my life had had an approximation of normality. I was different, but not markedly so. I knew things were going to change, and not for the better. The reality check came when I applied for the Disabled Living Allowance (or whatever it was called back then) mobility constituent. I'd previously been turned down but now a panel of doctors labelled officially 'disabled'. They also provided a written assessment. I was barely 18 and was told I'd be in a wheelchair before I was 25. They were out by at least 2 years. I was left wondering whether life was worth bothering with.
Next time – Finding a direction.
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