Let's face it, severe disability is not going to be everyone's first choice of lifestyle, but if that's what you're stuck with then there has to be a funny side. Join me on the ups, downs and sheer bizarreness of life in a wheelchair, a family, and a society determined to make things difficult. Guaranteed to make you smile (and groan). A good read.
Monday, 25 August 2014
The Policeman's Belt
We are just back from our holiday in Hampshire. We stayed in a cabin on the edge of the New Forest at a place called Shorefield near Milford-on-Sea. Door to door the journey should take only a little over two and a half hours, it took us nearly six. It would have taken longer if not for a policeman's belt.
The A3 is one of the arterial routes out of London: a six lane, high-speed series of fly-overs and underpasses funnelling traffic out to the M25 orbital motorway or onwards to Portsmouth with its ferry links to the continent. The road is packed with commuters, juggernauts, families on their way to Chessington World of Adventure, locals and a myriad of commercial vehicles all rushing to get where they are going at breakneck speed down unfeasibly narrow lanes and ominously dented crash barriers. It is, without doubt, one of the scariest roads in the South-East. At Tolworth the road dives into an underpass beneath a large roundabout and the hard-shoulder is replaced by concrete walls mere inches from the left-hand lane and the air is replaced by exhaust fumes and the thunderous echo of speeding internal combustion engines reverberating off those all-to-close walls. It was here, as we were being swept through the underpass at 60 MPH, that from beneath our car came the shrieking, clattering, deafening sound of metal on road surface and from behind a tail of sparks lighting up the carriageway. Polly reduced speed down to a crawl but it still sounded like a brick in a tumble-dryer and there was still a small firework display trailing behind. As vehicles screeched and swerved around us she pulled onto the small triangle of hatched white lines that marked the lanes merging from the roundabout above with the main duel carriageway exiting the tunnel heading south. Traffic was now screaming passed us on both our left and our right hand sides causing the car to vibrate and sway as it was buffeted by turbulence from high-sided vans and lorries.
Polly phoned the police and explained our predicament. No, we couldn't vacate the car and find a safe place to wait for assistance. The nearest safe place was a minimum of two lanes of high-speed traffic away and over a crash barrier. It would be tricky to get there with two children, an OAP and an electric wheelchair. The police dispatch operator said they'd send someone straight away. Sure enough, a few minutes of buttock-clenching fear later, a police van pulled up with reassuringly bright flashing blue lights to close off the lane behind us. A quick glance under our vehicle told the police officer that our exhaust pipe had snapped, possibly caused by some of the debris that littered the underpass, and that was the reason we were parked where we were and not because we were extreme picnickers or something.
"It's scary here," he told Polly nervously, flinching as a juggernaut whipped by. "Very scary. I think I'll call traffic. They're equipped for this kind of thing. Maybe they'll be able to tie your exhaust pipe up. I'll wait in my van until they get here." Soon, two traffic police cars arrived and the officers assessed the situation. They assured Polly she had done exactly the right thing and then set about trying to temporarily fix things. Eventually an officer leaned in the window.
"We've tied the exhaust pipe up," he said. "It should hold until we can get you somewhere safe. We didn't have any wire so I've used my belt. My colleague's belt is plastic so it would melt but mine is leather. Good job I had a hearty breakfast or me trousers would be down around me knees. Now we'll stop the traffic so you can get up to speed. Follow us and we'll lead you to a safe place to wait for the AA. Then can I have my belt back, please?"
We were escorted off the A3 by the police. You could see passing drivers wondering what awful crime we had committed. The traffic police led us to a garage forecourt and the policeman retrieved his slightly singed leather belt. We waved them off and settled down to await the AA who arrived after about half an hour. The AA man explained that the exhaust had broken at a particularly tricky place and because our van is adapted to carry a wheelchair the exhaust is nonstandard, it having been customised to allow for a lower floor. In short, he couldn't fix it. Instead he tied it up, this time with wire, not a belt, and led us to the local Kwik-Fit in Surbiton.
Because the exhaust is nonstandard Kwik-Fit couldn't just plonk a new one under the car. We have to order a completely new customised unit from a specialist manufacturer. Shouldn't take more than a week or so. The man said he would try to make a temporary mend using a cuff he'd order from the main supplier. It would take an hour or so to arrive so we settled down in their waiting room and played with the fancy drinks machine while we waited. Eventually the part arrived and the Kwik-Fit man got to work bodging a fix. It took a little while but, at last, the man announced that he and his colleague had engineered a solution that held the two bits of exhaust pipe together and that it should last through our holiday and until a new complete unit could be made and fitted. We braced ourselves for the bill for this impromptu piece of automotive construction. "No charge," said the man cheerfully. "Have it on us. Enjoy your holiday." It might not be true that you can't get quicker than a Kwik-Fit fitter but you certainly can't find nicer. Thank you Kwik-Fit, Surbiton. And if you see a police traffic officer with a burnt leather belt then please give him a wave.
Thank you for reading.
Friday, 8 August 2014
Making A Move - Part One
If you have been a follower of this blog for any length of time you will know that in 2011 we moved to a new house. Previously we had been living in a two bedroom ground floor flat with a small garden but with two growing boys and the paraphernalia that comes with disability it was becoming a bit of a squeeze, to say the least. It took the intervention of our MP, Tom Brake and our GP, Dr T as well as social services, the district nurses and letters from a specialist doctor at Kings' Hospital to eventually get things moving, so to speak. And, of course, an Occupational Therapist, someone with a professional understanding of disability and the appropriate equipment and housing needs required by us pesky disabled folk.
But, just in case you think the process was a smooth one, let tell you a story. We had been assigned an OT, let's call him Mike for the purposes of this blog. Mike was a charming man whose job, in our case, was to help us find suitable accommodation. He was full of ideas and had a lot of sympathy for our position and so set about finding us somewhere with at least three bedrooms. Three bedrooms was his mantra. I began to worry exactly how much of a grasp of our situation he actually had when he took us to view what he considered to be an ideal prospective home. It was a bungalow in Sutton, located directly behind the High Street at the end of a cul-de-sac. You could go out of the front door and be in Asda within thirty seconds. Of course, you had to share your parking slot not only with the local residents but also with the delivery lorries for the local stores. The bungalow had a tiny garden and was overlooked by blocks of flats on all sides. You could only see the sky if you looked directly up and there was an odour of rubbish emanating from the communal bins some 30 feet away but, as Mike cheerfully reminded us, the bungalow had three bedrooms.
Inside there was a combination kitchen cum living room which was, in total, about two thirds the size of our current living room. The ceiling was a kind of nicotine mustard yellow from, well, nicotine it appeared - and smelt. Along the hallway was a bathroom that I pointed out that I couldn't get the wheelchair to fit in. Next to it was a small cupboard that Mike suggested we could knock through to make more room. Also along the hallway were the three, much trumpeted, bedrooms. I couldn't get into any of them because the angles were too tight but even from the doorways I could see that each bedroom was smaller than either of our already too small current bedrooms. Mike suggested, after he had assessed the situation, that if I backed into the smaller of the bedrooms first I could get the angle to enter the slightly larger one if we pushed the bed into the corner and took out the wardrobe. Instead I reversed back down the narrow hall to the only place I could turn around, the kitchen cum living room. I could hear Polly reassuring the current occupant that we really didn't mind the mess and absolutely understood how difficult it could be keeping a home clean.
Polly and I retreated to a local cafe (about ninety seconds away, very convenient) to weigh up the pros and cons. We'd agreed to meet Mike to give him our impressions there in a few minutes time. The pros, we decided, were good access to the shops. The cons were too many to list. When Mike arrived, grinning cheerfully, he said, "There you go, three bedrooms. Sorted."
As politely as I could I pointed out that yes, technically the bungalow had three bedrooms but that, in actuality, the bungalow was considerably smaller than our current flat and that what we really needed was more space. Mike was a little put out. "It has three bedrooms," he said, firmly. "You said you needed three bedrooms." I looked to Polly, hopelessly. "I think what Steve is trying to say," explained Polly, "is that, yes, we need three bedrooms but that of those three bedrooms at least one of them has to be large enough to get the wheelchair into as well as the bed and the hoist and, perhaps, a chest-of-draws." "Ah," said Mike, triumphantly. "I've thought of that. We can knock through into that cupboard next to the bathroom!" "The same cupboard we were going to knock through so I could get into the bathroom?" I asked doubtfully. "It's a linen cupboard - not the bloody Tardis." Ignoring my sarcasm Mike looked sceptically at my wheelchair. "That's a mighty big chair," he said. "It's not that big," I protested. "It fits in a car. It fits in lifts. It's not a Humvee." "Does it now," mused Mike. "Does it what?" "Fit in a lift." "Absolutely," I assured him. "Up and down in them all the time." With that Mike whipped out a tape-measure and wrote down the dimensions of my chair.
On the way home we passed some houses being built on an old brown-field site. We looked at them longingly.
Next time... Why it is important to understand how a wheelchair works.
But, just in case you think the process was a smooth one, let tell you a story. We had been assigned an OT, let's call him Mike for the purposes of this blog. Mike was a charming man whose job, in our case, was to help us find suitable accommodation. He was full of ideas and had a lot of sympathy for our position and so set about finding us somewhere with at least three bedrooms. Three bedrooms was his mantra. I began to worry exactly how much of a grasp of our situation he actually had when he took us to view what he considered to be an ideal prospective home. It was a bungalow in Sutton, located directly behind the High Street at the end of a cul-de-sac. You could go out of the front door and be in Asda within thirty seconds. Of course, you had to share your parking slot not only with the local residents but also with the delivery lorries for the local stores. The bungalow had a tiny garden and was overlooked by blocks of flats on all sides. You could only see the sky if you looked directly up and there was an odour of rubbish emanating from the communal bins some 30 feet away but, as Mike cheerfully reminded us, the bungalow had three bedrooms.
Inside there was a combination kitchen cum living room which was, in total, about two thirds the size of our current living room. The ceiling was a kind of nicotine mustard yellow from, well, nicotine it appeared - and smelt. Along the hallway was a bathroom that I pointed out that I couldn't get the wheelchair to fit in. Next to it was a small cupboard that Mike suggested we could knock through to make more room. Also along the hallway were the three, much trumpeted, bedrooms. I couldn't get into any of them because the angles were too tight but even from the doorways I could see that each bedroom was smaller than either of our already too small current bedrooms. Mike suggested, after he had assessed the situation, that if I backed into the smaller of the bedrooms first I could get the angle to enter the slightly larger one if we pushed the bed into the corner and took out the wardrobe. Instead I reversed back down the narrow hall to the only place I could turn around, the kitchen cum living room. I could hear Polly reassuring the current occupant that we really didn't mind the mess and absolutely understood how difficult it could be keeping a home clean.
Polly and I retreated to a local cafe (about ninety seconds away, very convenient) to weigh up the pros and cons. We'd agreed to meet Mike to give him our impressions there in a few minutes time. The pros, we decided, were good access to the shops. The cons were too many to list. When Mike arrived, grinning cheerfully, he said, "There you go, three bedrooms. Sorted."
As politely as I could I pointed out that yes, technically the bungalow had three bedrooms but that, in actuality, the bungalow was considerably smaller than our current flat and that what we really needed was more space. Mike was a little put out. "It has three bedrooms," he said, firmly. "You said you needed three bedrooms." I looked to Polly, hopelessly. "I think what Steve is trying to say," explained Polly, "is that, yes, we need three bedrooms but that of those three bedrooms at least one of them has to be large enough to get the wheelchair into as well as the bed and the hoist and, perhaps, a chest-of-draws." "Ah," said Mike, triumphantly. "I've thought of that. We can knock through into that cupboard next to the bathroom!" "The same cupboard we were going to knock through so I could get into the bathroom?" I asked doubtfully. "It's a linen cupboard - not the bloody Tardis." Ignoring my sarcasm Mike looked sceptically at my wheelchair. "That's a mighty big chair," he said. "It's not that big," I protested. "It fits in a car. It fits in lifts. It's not a Humvee." "Does it now," mused Mike. "Does it what?" "Fit in a lift." "Absolutely," I assured him. "Up and down in them all the time." With that Mike whipped out a tape-measure and wrote down the dimensions of my chair.
On the way home we passed some houses being built on an old brown-field site. We looked at them longingly.
Next time... Why it is important to understand how a wheelchair works.
Sunday, 3 August 2014
Faulty Connections
Thank you to everyone who has welcomed my return to blogging, I've appreciated every comment, like, repost and retweet. I'm glad to be back, after all, if Li wasn't blogging I wouldn't be able to ask you this...
What, I ask you, would you consider to be the minimum requirements, the prerequisites, for a wheelchair repair engineer? An encyclopaedic knowledge of different kinds of wheelchairs? A familiarity with the various faults that wheelchairs can develop? A well equipped toolkit so you can fix the fault you have cannily discerned and identified? You'd think so, wouldn't you. Let me disabuse you of these foolish notions.
My wheelchair has electrically powered leg-rests. Each leg-rest can be adjusted independently using a setting on my hand-controller. For a few months there has been a fault on the right side leg-rest whereby whenever it is used it causes a short-circuit that locks up the controller and flashes up an error message. This is particularly annoying because it is very easy to accidentally find yourself knocking the joystick when cycling through the various options, particularly when trying to find recline or tilt, suddenly finding the chair disabled. To reset you have to switch off the chair, switch it back on, press the Mode button and cycle through the options again. Not a critical fault but an annoying one nonetheless.
We arranged for an engineer to visit from the company that has the local wheelchair repair contract on Tuesday morning. Tuesday morning was an ideal time because I have extended hours on the BiPap those mornings and am therefore not using the wheelchair. The engineer didn't come in the morning as arranged, he came in the afternoon instead. I demonstrated the problem to him. He sucked air through his teeth in the traditional manner and said "I wonder why that happens?" At this point Polly arrived and pointed to the exposed wires on the connecting cable. "Hmm," said the repairman. "I'll need a soldering iron." He was the expert so we nodded encouragingly. "I haven't got a soldering iron." Of course he didn't. After all, why would a repairer of electric wheelchairs ever need such an exotic tool? He examined the wires, unwrapping the worn electrical tape that had left them exposed and therefore able to touch each other. "The problem is these wires," he explained knowledgeably. Polly's eyes almost disappeared as they rolled in their sockets. "They need connecting." "I have a soldering iron," said Polly, helpfully. A slightly panicked look came onto his face. "But I don't think I've got any solder." Was that relief I saw in the young man's eyes? "We could pop down the road to the hardware store and get some," she suggested. At that point the repairman mumbled something about getting the right stuff from the depot. He then rewrapped the wires in the decidedly non-sticky electrical tape he had removed originally and asked me if that had fixed the problem. It hadn't. "Perhaps some fresh tape might make it more insulated," wondered Polly. "Err... I haven't got any with me." Later, with the engineer safely away and promising to arrange a return appointment, Polly examined the wires carefully and twisted the appropriate ones together. She found a roll of gaffer-tape and isolated each of the wires, wrapping them individually. Then, with a cable-tie, she attached the cable safely to the appropriate part of the leg-rest. It took less than five minutes and not a drop of solder before the fault was fixed. Meanwhile, we're still waiting for the company to contact us and make a return appointment. I imagine the young man is looking at the mysterious tool in his tool-kit and wondering why he needs a screwdriver that gets so hot at one end. Thank you for reading.
What, I ask you, would you consider to be the minimum requirements, the prerequisites, for a wheelchair repair engineer? An encyclopaedic knowledge of different kinds of wheelchairs? A familiarity with the various faults that wheelchairs can develop? A well equipped toolkit so you can fix the fault you have cannily discerned and identified? You'd think so, wouldn't you. Let me disabuse you of these foolish notions.
My wheelchair has electrically powered leg-rests. Each leg-rest can be adjusted independently using a setting on my hand-controller. For a few months there has been a fault on the right side leg-rest whereby whenever it is used it causes a short-circuit that locks up the controller and flashes up an error message. This is particularly annoying because it is very easy to accidentally find yourself knocking the joystick when cycling through the various options, particularly when trying to find recline or tilt, suddenly finding the chair disabled. To reset you have to switch off the chair, switch it back on, press the Mode button and cycle through the options again. Not a critical fault but an annoying one nonetheless.
We arranged for an engineer to visit from the company that has the local wheelchair repair contract on Tuesday morning. Tuesday morning was an ideal time because I have extended hours on the BiPap those mornings and am therefore not using the wheelchair. The engineer didn't come in the morning as arranged, he came in the afternoon instead. I demonstrated the problem to him. He sucked air through his teeth in the traditional manner and said "I wonder why that happens?" At this point Polly arrived and pointed to the exposed wires on the connecting cable. "Hmm," said the repairman. "I'll need a soldering iron." He was the expert so we nodded encouragingly. "I haven't got a soldering iron." Of course he didn't. After all, why would a repairer of electric wheelchairs ever need such an exotic tool? He examined the wires, unwrapping the worn electrical tape that had left them exposed and therefore able to touch each other. "The problem is these wires," he explained knowledgeably. Polly's eyes almost disappeared as they rolled in their sockets. "They need connecting." "I have a soldering iron," said Polly, helpfully. A slightly panicked look came onto his face. "But I don't think I've got any solder." Was that relief I saw in the young man's eyes? "We could pop down the road to the hardware store and get some," she suggested. At that point the repairman mumbled something about getting the right stuff from the depot. He then rewrapped the wires in the decidedly non-sticky electrical tape he had removed originally and asked me if that had fixed the problem. It hadn't. "Perhaps some fresh tape might make it more insulated," wondered Polly. "Err... I haven't got any with me." Later, with the engineer safely away and promising to arrange a return appointment, Polly examined the wires carefully and twisted the appropriate ones together. She found a roll of gaffer-tape and isolated each of the wires, wrapping them individually. Then, with a cable-tie, she attached the cable safely to the appropriate part of the leg-rest. It took less than five minutes and not a drop of solder before the fault was fixed. Meanwhile, we're still waiting for the company to contact us and make a return appointment. I imagine the young man is looking at the mysterious tool in his tool-kit and wondering why he needs a screwdriver that gets so hot at one end. Thank you for reading.
Subscribe to:
Posts (Atom)