Every so often someone comes up with an idea to improve my life – whether I like it or not.
In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.
Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.
On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.
In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.
It was only later that Polly pointed out that the shower-chair had extendible legs.
At least I'm clean.
Sunday, 21 June 2009
Monday, 15 June 2009
Not Just A Chair
Oh the dilemma.
If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.
The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.
However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.
To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.
So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .
They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.
I'll keep you informed.
If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.
The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.
However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.
To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.
So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .
They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.
I'll keep you informed.
Thursday, 11 June 2009
Back To School
How do I get myself into these situations I thought as I faced a group of ever so slightly surly looking teenagers. It was yesterday morning and I was sat with Polly in a small classroom in a centre that educates teenagers who, for various reasons, can't be taught in mainstream schools. I had been invited to talk to them about 'over-coming disabilities' by a friend, Karen, who heads up the unit but in a previous life had been an actor with whom I had worked with many times. Several weeks earlier it had seemed like a good idea but now the reality was before me in the form of a dozen kids and several support staff.
It was pretty obvious from the start that any dissertation on social constructs and disability models was not going to cut it with this crowd. Instead, with Karen asking leading questions, I embarked on a series of personal anecdotes about my childhood, schooling and early employment, before talking about college and how education gives you wider options and opportunities. To my relief and surprise I could see that the youngsters were engaged and listening. When Karen asked me how I coped with overt discrimination I explained that I took the anger and compressed it into a white hot ball of fury and pushed it way down deep deep inside me and then once in a while I would let it explode as I went mad with a machine gun. The staff all moved back a little but the kids fell about laughing.
Polly told them a potted version of our romantic history. The boys rolled their eyes and the girls went aah. They all liked the fact that I wooed her with fruitcake rather than flowers.
At one point we talked a little about ethics, and after Karen had explained what ethics were, Polly and I told them about the terrible decisions we were faced with whilst having Matthew and Sam. As I explained the 50/50 nature of inheriting FSH Muscular Dystrophy by asking them to imagine flipping a coin you could have heard a pin drop.
We finished with a Q and A session where the questions asked and the ensuing discussions showed that they had taken on board and appreciated the subject-matter. When asked how to approach someone in a wheelchair I told them to look at the person not the chair. It might be that the person in the wheelchair was witty, intelligent, sophisticated and immensely charming like myself, or, just as likely, a complete plonker. But, unless they engaged with them in the first place they would never find out. Hardly ground breaking, barrier smashing stuff, but true nonetheless.
For a bunch of difficult teenagers who can't cope with mainstream education they turned out to be rather nice, interested and interesting people. Who'd have thought it.
It was pretty obvious from the start that any dissertation on social constructs and disability models was not going to cut it with this crowd. Instead, with Karen asking leading questions, I embarked on a series of personal anecdotes about my childhood, schooling and early employment, before talking about college and how education gives you wider options and opportunities. To my relief and surprise I could see that the youngsters were engaged and listening. When Karen asked me how I coped with overt discrimination I explained that I took the anger and compressed it into a white hot ball of fury and pushed it way down deep deep inside me and then once in a while I would let it explode as I went mad with a machine gun. The staff all moved back a little but the kids fell about laughing.
Polly told them a potted version of our romantic history. The boys rolled their eyes and the girls went aah. They all liked the fact that I wooed her with fruitcake rather than flowers.
At one point we talked a little about ethics, and after Karen had explained what ethics were, Polly and I told them about the terrible decisions we were faced with whilst having Matthew and Sam. As I explained the 50/50 nature of inheriting FSH Muscular Dystrophy by asking them to imagine flipping a coin you could have heard a pin drop.
We finished with a Q and A session where the questions asked and the ensuing discussions showed that they had taken on board and appreciated the subject-matter. When asked how to approach someone in a wheelchair I told them to look at the person not the chair. It might be that the person in the wheelchair was witty, intelligent, sophisticated and immensely charming like myself, or, just as likely, a complete plonker. But, unless they engaged with them in the first place they would never find out. Hardly ground breaking, barrier smashing stuff, but true nonetheless.
For a bunch of difficult teenagers who can't cope with mainstream education they turned out to be rather nice, interested and interesting people. Who'd have thought it.
Friday, 5 June 2009
Mobility Roadshow
The problem with not having blogged recently is that I have a backlog news and views to impart. For example, I have been beset by community physiotherapists, speech therapists and OTs who have all made eminently sensible suggestions and any one of them would have made for a good post. I also made the journey to King's Hospital to see Dr Rose and his team where I was assessed and plans were drawn up, strategies devised and letters arranged to be written. Dr Rose also, and most importantly, helped me to get a handle on what has been happening to me regarding my Muscular Dystrophy.
The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.
I need a new wheelchair. More about that soon.
Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.
It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.
In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.
In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.
We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.
More soon.
The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.
I need a new wheelchair. More about that soon.
Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.
It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.
In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.
In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.
We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.
More soon.
Tuesday, 2 June 2009
Still Blogging On
I'm sorry that I appeared to have disappeared from the blogosphere recently, I'm all right, honestly. A combination of annoying difficulties to do with actually typing words, sheer business and a run of good weather have conspired against my blogging duties. Thank you to those who enquired as to my virtual whereabouts During my hiatus various things have been happening.
Polly and I made the trek in to London for one of my regular appointments at the Royal Brompton Hospital. While I waited among the wheelchairs and breathing apparatus Polly went on to her Clown Doctor office in Islington to sort out her expenses form. I read my book and waited, nodding occasionally to nurses, doctors, phlebotomists and sundry support staff I have come to know over the years, and watching the assembled disabled folk wheezing and waiting. Steve, a technician, took blood from my earlobe and tested my blood gasses and eventually I was ushered in to the consultant's consulting room. Dr Simmonds checked me over and pronounced that my carbon dioxide levels are elevated and that they could, in theory, be exacerbating the somewhat unnervingly rapid deterioration in my muscular dystrophy. More time on the BiPap will be required and the various settings will need to be adjusted to compensate. On the plus side, it might help.
By way light relief, and it being half-term, we took the boys to the cinema to see A Night In The Museum 2. It being half-term and raining the cinema was packed full of screaming, overly excited children, all munching vast buckets of popcorn and other noisy comestibles. We had to wait until a later screening than we had intended and had to queue for what seemed like hours by a poster advertising a film called Drag Me To Hell. Enough said.
I've more to tell you but my patience with tapping out one letter at a time has worn thin.
Oh, by the way, we're off to the Mobility Roadshow near Cirencester on Thursday, so if you are intending to go, drop me a line or leave a comment and maybe we can rest our weary wheels and grab a coffee together.
Bye for now. I'll be back soon.
Polly and I made the trek in to London for one of my regular appointments at the Royal Brompton Hospital. While I waited among the wheelchairs and breathing apparatus Polly went on to her Clown Doctor office in Islington to sort out her expenses form. I read my book and waited, nodding occasionally to nurses, doctors, phlebotomists and sundry support staff I have come to know over the years, and watching the assembled disabled folk wheezing and waiting. Steve, a technician, took blood from my earlobe and tested my blood gasses and eventually I was ushered in to the consultant's consulting room. Dr Simmonds checked me over and pronounced that my carbon dioxide levels are elevated and that they could, in theory, be exacerbating the somewhat unnervingly rapid deterioration in my muscular dystrophy. More time on the BiPap will be required and the various settings will need to be adjusted to compensate. On the plus side, it might help.
By way light relief, and it being half-term, we took the boys to the cinema to see A Night In The Museum 2. It being half-term and raining the cinema was packed full of screaming, overly excited children, all munching vast buckets of popcorn and other noisy comestibles. We had to wait until a later screening than we had intended and had to queue for what seemed like hours by a poster advertising a film called Drag Me To Hell. Enough said.
I've more to tell you but my patience with tapping out one letter at a time has worn thin.
Oh, by the way, we're off to the Mobility Roadshow near Cirencester on Thursday, so if you are intending to go, drop me a line or leave a comment and maybe we can rest our weary wheels and grab a coffee together.
Bye for now. I'll be back soon.
Wednesday, 20 May 2009
Speak Easy
I have a new on-screen keyboard I am trying out, it has lots of fancy predictive text facilities that should, in theory, speed up my typing. I can but give it a go.
Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.
The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.
Until next time... Breathe in, breathe out.
Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.
The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.
Until next time... Breathe in, breathe out.
Tuesday, 19 May 2009
Bionics And Gaffer Tape
"Steve Deal, writer. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Steve Deal will be that man. Better than he was before. Better, stronger, faster... so long as Polly has enough gaffer tape."
Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.
The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.
So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.
The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.
In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.
And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.
Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.
The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.
So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.
The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.
In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.
And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.
Tuesday, 12 May 2009
Quiz Night
Which planet, apart from Venus, has no moon? Who, because of his smallpox vaccine, is known as the father of immunization? Name all seven colours of the rainbow. Who illustrated A.A. Milne's Winnie The Pooh? Who led the peasants' revolt of 1381? Which artistic movement was Monet part of? What is the chemical symbol for Tungsten?
Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.
The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.
As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.
The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.
Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.
Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.
Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.
Robert the Bruce.
R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)
Saturday night was Quiz night, a fund-raising event at the school. I love quizzes and become insufferably competitive at the merest hint of one, so this was an evening I had been looking forward to. Inevitably we were running late so had to gulp down tea before whizzing over to the school hall on foot and wheel.
The quiz was excellent, with a good balance of questions, and we had a good team comprising of an airline pilot, social worker, paramedic and someone in publishing among others. Our table was covered in crisps and snacky type things as well as wine and soft-drinks. Unfortunately I was beginning to get bubbly in the chest so the joyous prospect of eating high fat content potato based nibbles was diminished for me. After the first couple of rounds it was clear that we were outclassed by Table 5 who were answering correctly, on average, a question per round more than we were. I discreetly surveilled them, looking for evidence of iPhone internet connection, but it appeared they were just clever and not cheating. Rats.
As we passed through Food and Drink, Music and Sport I felt my head begin to swim as the bubbling in my lungs required me to cough more and more. By the time we entered into the History round Polly was suggesting we leave, or at least that she pop home to get the cough-assist machine. William Wallace I snapped. Robert the Bruce someone countered. Who led the Scots at bloody Bannockburn? Little red dots floated around me as I tried to order my Scottish battles. Bruce, I conceded. No I was not going home and no I didn't want Polly going to get the cough-assist machine. The second she left we would be faced with a series of questions on nursery rhymes or balloon modelling or something.
The final round, General Knowledge, came at last. We were in a good position to take second place, Table 5 having romped away with it by knowing who designed the Spitfire, but we needed a good round. Could I remember the name of the fish, previously thought to be extinct, rediscovered in the Indian ocean in 1938? Could I buffalo. I knew I knew it, it was on the tip of my tongue. Cough cough. Despite my pathetic performance our team managed a dignified second after all, thanks, in part, to knowing in which year Queen Victoria died.
Flushed with success and a surfeit of carbon dioxide I made my way home with Polly. To my horror and confusion I found that I could barely steer the wheelchair. It seemed to take forever to travel the route we have walked (wheeled) countless times before. My balance was completely shot and I couldn't get my hand in the right position to use the joystick. Fortunately Jason, a friend, team mate and para-medic, had offered to help me since we had had to cancel the carers that night. My thanks to him and Polly or I would never have made it to bed and the reassuring hum of the BiPap.
Now what? Oh yes, answers, as if you need them. Thanks to Geoff who compiled the quiz.
Mercury. Edward Jenner. Red Orange Yellow Green Blue Indigo Violet. E.H. Shepard. Watt Tyler. The Impressionists. W.
Robert the Bruce.
R. J. Mitchell. 1901. And the bloody fish was a Coelacanth, of course. (But you knew that, didn't you.)
Thursday, 7 May 2009
G'day
My apologies for the lack of posts this week. Frankly, tapping these missives out letter by letter puts me off writing unless there is something I particularly want to tell you about. This has been a slow week.
Yesterday I was visited by Gina, a community physiotherapist. Usually I have little truck for physiotherapists, who in my experience want to inflict pointless and painful exercises upon me, or wish to pummel me on the chest, ostensibly to clear mucous from the lungs, but in reality to satisfy their own sadistic tendencies, hammering away whilst saying, “there, does that feel better?” Physiotherapy is, generally speaking, a discipline that wishes to inflict pain and suffering with the intention of easing it. So it was with resignation rather than with anticipation that I greeted Gina.
Gina turned out to be quite nice. I think I should make it clear that this sentiment was in no way influenced by the fact that she was a young, blonde, bronzed, pony-tailed Antipodean who by all rights should have been dressed in a swimsuit, running along Bondi beach with a surf board tucked under one arm and with a can of shark repellent held at the ready, preparing to plunge into the foaming sea. No, that thought never entered my mind. Obviously. Not for a second. No.
Gina prodded and pulled me in the manner typical of her profession. She examined ceiling hoists, profiling beds and shower chairs, pronouncing herself unsatisfied at my lack of support, both from certain other services and, less figuratively, from my wheelchair seating position. Polly watched with an amused expression as I tolerated being poked and stretched with uncharacteristic good humour, arching her eyebrow as I said “No, that hardly hurts at all,” as my feet were being twisted into an unnaturally natural position.
Later, with the theme tune to Neighbours unaccountably running through my head, I thought about writing a post for this blog, but then thought, no, I'm too exhausted by my exertions at the hands of a health professional to manage right now. They'll have to wait until tomorrow.
G'day.
Yesterday I was visited by Gina, a community physiotherapist. Usually I have little truck for physiotherapists, who in my experience want to inflict pointless and painful exercises upon me, or wish to pummel me on the chest, ostensibly to clear mucous from the lungs, but in reality to satisfy their own sadistic tendencies, hammering away whilst saying, “there, does that feel better?” Physiotherapy is, generally speaking, a discipline that wishes to inflict pain and suffering with the intention of easing it. So it was with resignation rather than with anticipation that I greeted Gina.
Gina turned out to be quite nice. I think I should make it clear that this sentiment was in no way influenced by the fact that she was a young, blonde, bronzed, pony-tailed Antipodean who by all rights should have been dressed in a swimsuit, running along Bondi beach with a surf board tucked under one arm and with a can of shark repellent held at the ready, preparing to plunge into the foaming sea. No, that thought never entered my mind. Obviously. Not for a second. No.
Gina prodded and pulled me in the manner typical of her profession. She examined ceiling hoists, profiling beds and shower chairs, pronouncing herself unsatisfied at my lack of support, both from certain other services and, less figuratively, from my wheelchair seating position. Polly watched with an amused expression as I tolerated being poked and stretched with uncharacteristic good humour, arching her eyebrow as I said “No, that hardly hurts at all,” as my feet were being twisted into an unnaturally natural position.
Later, with the theme tune to Neighbours unaccountably running through my head, I thought about writing a post for this blog, but then thought, no, I'm too exhausted by my exertions at the hands of a health professional to manage right now. They'll have to wait until tomorrow.
G'day.
Friday, 1 May 2009
It Should Have Been Me
May 1st is Blogging Against Disablism Day, a highlight in the disability blogging calendar, if you can imagine such a thing. Here is my contribution.
There I was, flicking through the pages of Mobilise, a magazine promoting mobility for disabled people, something I'm sure we'd all agree is a good thing. (Promoting mobility I mean, not flicking through the pages of a magazine. We disabled folk are notoriously sedentary.) Anyway, there I was, gazing at adapted vehicles with sexy aluminium ramps and scooters with five wheels for extra stability, when there between an article about a kid taking his local bank to court over access issues and one about Naidex '09, a conference promising innovative features, new products and educational seminars (wow!), there was an article that might change my life and give me a bite at the reality TV cherry. BBC 3 are looking for wannabe wheelchair dancers. Sign me up.
“BBC 3 seeks wheelchair users”, the article read. “Would you like to try something new?“ it continued. “Fancy learning to dance?” Would I ever! “If so, BBC 3 would like to hear from you. We are searching for wheelchair users to get involved in an exciting new series.” This could be my breakthrough moment. Dancing on wheels. I had Polly phone the contact number straight away.
The conversation started well. I have a history in the the arts, I'm married to an actor for crying out loud. I am disabled and I use a wheelchair! I'm articulate. Okay, my speech is a little bit slurry but the subtitles would be a hoot. The nice young man at the television production company was starting to sound excited. He obviously was beginning to think he had found his Ray Quinn, or at least his John Sergeant. (Sorry if you are reading this outside of the UK, you'll have to take a guess at the cultural references.) Polly told him she assumed they were looking for couples and was preparing to assure him she could hoof with best of them when he told her they intended to partner the wheelchair dancers with able-bodied professionals. I felt disappointed for Polly but stoically imagined myself partnered with some nubile, Lycra-clad beauty, prepared to perch sensually and artistically on my foot-plates for the sake of entertainment. I heard Polly tell him she imagined I wouldn't mind too much but that she hoped my costumes would be particularly lurid and skin-tight so as not to be out shone. “He'd like lots of sequins and colourful feathers,” she assured him whilst smiling at me malevolently.
I was mentally preparing to sign on the dotted line and was jiggling my joystick to a Latin rhythm in anticipation of reality TV fame and hoping that readers of this blog would vote to keep me in week by week, when I was dealt a devastating blow. I heard Polly say, “an electric wheelchair, a Samba Quickie... Oh.” I could tell from her face that she was not hearing good news. “No, he can't use a manual chair any more.”
After she put the phone down she explained that, simply put, I am too disabled to appear on a disability based reality TV show. How unfair is that? I mean, my chair is named after a dance! But oh no, they want able-bodied disabled wheelchair users who can whirl and twirl on two wheels and who don't need recharging after every Foxtrot and Argentine Tango. The show will never amount to anything without me, mind you. My Bosa Nova on four wheels would have been a televisual water-cooler moment in history. It hurts me to know you'll never see it.
But then, to rub salt in the wound, Polly was told they are hoping that wheelchair users will come and be in the audience. I ask you! Who would want to see a bunch of cripples roll around a dance floor when one of them isn't me? I'm thinking of pitching my own idea for a reality TV programme, Wheelchair Death Race, where wheelchair users slalom down a steep hill knocking over celebrities en route. Now that's entertainment.
There I was, flicking through the pages of Mobilise, a magazine promoting mobility for disabled people, something I'm sure we'd all agree is a good thing. (Promoting mobility I mean, not flicking through the pages of a magazine. We disabled folk are notoriously sedentary.) Anyway, there I was, gazing at adapted vehicles with sexy aluminium ramps and scooters with five wheels for extra stability, when there between an article about a kid taking his local bank to court over access issues and one about Naidex '09, a conference promising innovative features, new products and educational seminars (wow!), there was an article that might change my life and give me a bite at the reality TV cherry. BBC 3 are looking for wannabe wheelchair dancers. Sign me up.
“BBC 3 seeks wheelchair users”, the article read. “Would you like to try something new?“ it continued. “Fancy learning to dance?” Would I ever! “If so, BBC 3 would like to hear from you. We are searching for wheelchair users to get involved in an exciting new series.” This could be my breakthrough moment. Dancing on wheels. I had Polly phone the contact number straight away.
The conversation started well. I have a history in the the arts, I'm married to an actor for crying out loud. I am disabled and I use a wheelchair! I'm articulate. Okay, my speech is a little bit slurry but the subtitles would be a hoot. The nice young man at the television production company was starting to sound excited. He obviously was beginning to think he had found his Ray Quinn, or at least his John Sergeant. (Sorry if you are reading this outside of the UK, you'll have to take a guess at the cultural references.) Polly told him she assumed they were looking for couples and was preparing to assure him she could hoof with best of them when he told her they intended to partner the wheelchair dancers with able-bodied professionals. I felt disappointed for Polly but stoically imagined myself partnered with some nubile, Lycra-clad beauty, prepared to perch sensually and artistically on my foot-plates for the sake of entertainment. I heard Polly tell him she imagined I wouldn't mind too much but that she hoped my costumes would be particularly lurid and skin-tight so as not to be out shone. “He'd like lots of sequins and colourful feathers,” she assured him whilst smiling at me malevolently.
I was mentally preparing to sign on the dotted line and was jiggling my joystick to a Latin rhythm in anticipation of reality TV fame and hoping that readers of this blog would vote to keep me in week by week, when I was dealt a devastating blow. I heard Polly say, “an electric wheelchair, a Samba Quickie... Oh.” I could tell from her face that she was not hearing good news. “No, he can't use a manual chair any more.”
After she put the phone down she explained that, simply put, I am too disabled to appear on a disability based reality TV show. How unfair is that? I mean, my chair is named after a dance! But oh no, they want able-bodied disabled wheelchair users who can whirl and twirl on two wheels and who don't need recharging after every Foxtrot and Argentine Tango. The show will never amount to anything without me, mind you. My Bosa Nova on four wheels would have been a televisual water-cooler moment in history. It hurts me to know you'll never see it.
But then, to rub salt in the wound, Polly was told they are hoping that wheelchair users will come and be in the audience. I ask you! Who would want to see a bunch of cripples roll around a dance floor when one of them isn't me? I'm thinking of pitching my own idea for a reality TV programme, Wheelchair Death Race, where wheelchair users slalom down a steep hill knocking over celebrities en route. Now that's entertainment.
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