A Special Thanks

‘A special thanks goes to…’

I feel like one of those award show hosts. But without the false tan, bleached teeth and the big hair. Well without much hair at all really. Let’s not talk about teeth. Back to the thanks:

‘A special thanks goes to….’

 ‘The award for the best… goes to…’

Hey, maybe I should be an awards host. I’m a natural. I can just see me up front, in a big Hollywood venue. Will they have a ramp for the wheelchair? Or would I need to present from in front of the audience, just by the orchestra pit? I know, will start off with:

‘Welcome to the 2022 awards for the best…’

Everyone will be looking around asking, ‘who’s that speaking?’

‘Where is that deep and luscious voice coming from?’

‘Is that James Earl Jones’

‘No, don’t be silly, it’s Morgan Freeman.’

Anyway, enough of the asides. I am writing this blog as a big thank you. A very big thank you. A special thanks to the two social workers from Hartlepool Borough Council, who have helped Mary and I these last few months. I would love to name them, but I am told I can’t and besides, they know who they are. Thank you El and Karla, oops, no, just made those names up.

The two of them have helped us sort out care provision at a really difficult time. They have demonstrated empathy, understanding, care and patience. I cannot praise them highly enough. Anyone who has read my blogs regularly will know that I believe people who care for people are the most valuable people in the world. Does that remind you of a Barbara Streisand song? ‘People who need people, are the…’ Totally different meaning of course. But give me the whiff of a song and I’m off.

Back to these two amazing and wonderful social workers. Along with all those who care for and help others. We had a brilliant advocate as well. Not Advocaat that’s a cream liqueur. They should be recognised as the best and paid the most. People who care for people, not cream liqueurs. Instead, we as a country and indeed, the world recognises them least. We value money, fame and entertainment over those who care for people. What an upside-down world we live in.

I know this, when an MP, banker, millionaire financier or the PM is ill. They won’t be calling on their brokers, personal assistants or advisors to care for them. However highly they pay them. They will turn to health workers, carers and those at the sharp end of care. I am pleased to say that when we have needed to do that, we have found help and support.

As I round off my awards ceremony, I repeat my special thanks to these two wonderful social workers from Hartlepool Borough Council. Well done you are brilliant people, and we really value you. Everyone who can stand, up on your feet for a rousing applause.

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Wheelchair Etiquette

Well, anyone who knows me, will realise that I am 100% serious. I never have my tongue in my cheek, nor write farcical blogs. Now we’ve established that. Let me outline an important issue that has come to my attention. I was reading on a wheelie site about how to greet a fellow wheelie when out and about.

Now this is an issue that has given me must angst. I never know what’s right. For anyone who is not a wheelchair user, picture the scene. You are out in your wheelchair. You may be in a powered wheelchair. Or being pushed. You may even be self-propelling. Hold on, the motive force is irrelevant. Then you see a wheelchair coming the other way. What do you do? In between feeling awkward and panicking that is.

If you were on your feet and walking along. You could do what most people in that situation do. Pretend your eye level is too high to notice the wheelchair. We are literally out of your sightline. Job done; embarrassing situation averted. No need to think of a suitable reaction. Well, I can’t do that. Even if I wanted to. I am looking straight at the oncoming stranger. They just happen to also be in a wheelchair. Is that some kind of kinship? An automatic bond. A fellowship of the wheel? All friends together. United in our common limitations? How do I react? What do I say?

So, a wheelchair is heading towards me. I needed to repeat that as it was so long ago I last mentioned it. Who is in it? Does it matter anyway? If it was a famous person, or Royalty. The Queen has a fancy golf cart now. So, it could be her, out for a spin in another new bit of equipment. Maybe it’s someone I know. Scrub that. I don’t know anyone local to me in a wheelchair. A stranger is wheeling towards me at speed. Actually, that’s unlikely. They are probably wheeling towards me slowly. I have lots of time to consider my actions. Oh, the angst.

Have you got the scene in your mind? Let me mess that up and add some extra detail. The most likely time I might meet a fellow wheelie is on a wide and straight promenade. As in alongside a beach. Now you are all in the South of France or Spain, sun beating down. Cool off a bit. This is the Northeast of England.

Back to reality. I am wheeling slowly towards a fellow wheelie along the promenade. This is sounding like a Hollywood movie. You’re picturing a romantic moment of meeting. The music swelling. But that is not the right image at all. I am approaching a complete stranger. Unless it is the Queen. I feel like I know her. She’s on my stamps and money. No, its not the queen. Let’s not be silly.

Do I smile, pull a face, ignore them, frown, scowl, say something? Hang on a second, who said that? I am British and an introvert to boot. Maybe there is a secret greeting for two wheelchair users. Are we like the Masons? Do we have a coded wheel bump, or twirl of the chairs that we are meant to do? Is there just a double right eyed wink? That could be tricky if you get it wrong. Just imagine you all take me literally and start doing that. I really need to know what to do.

Answers on a postcard to, ‘WheelsUp, Confused Row, Bea MY M8

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No Fingered Typing

I have a confession to make. Don’t get too excited. It’s not that. Or that. I never learnt to type. It’s not that either.

When I was doing my Open University course in English Lit and a Diploma in Creative Writing. I know, it is incredible that I am actually qualified to write. Who knew, not me. At risk of highly annoying any OU tutors who may be reading this; as if they would be reading it. They have given up on me years ago. I had better get back to the point. When I was taking my OU degree and diploma, don’t forget that. I was disabled and limited. Not as much as now, but significantly. Here’s an aside for anyone thinking of studying who is disabled. There are grants available to help you get any equipment you need to study. Which meant that when I started to study, they realised I was typing with two fingers and gave me a two fingered key board. I could just leave it at that and there will be loads of people trying to buy two fingered key boards. This is the problem with social media. If something is written here; it must be true. So let me be very clear; I was joking. There are no two fingered keyboards. Unless they sell them in the shop with the striped paint.

I hope that cleared up any confusion. In reality there will still be people who believe that there are two fingered key boards. Nothing I say will convince them otherwise.

I really must keep on topic. So the real thing that the OU disability grant gave me was voice recognition software. At the time that was Dragon Naturally Speaking. It enabled me to write and even use my PC using just my voice. Now you are all thinking, ‘so what, we can do that with Siri, Google and Word uncle Tom Cobbly and all.’ Yes, but this was a few years ago. Before every device chatted to you, morning, noon and night. Before you could say, ‘Siri, take a letter.’ And she would say, ‘what?’ Or you could click on a microphone button in Word and an icon sit pulsing, waiting for you to talk. This was even before you could have an argument with Alexa.

These days, I have Word. With that pulsating microphone button. The one problem I find… stage fright. It’s like you have walked out onto a giant stage. The audience is all staring at you. You walk up to the microphone ready to sing. Everything goes quiet. What do you say? Obviously I burst into song. Sorry, I mean that I start dictating amazing literature. The next War and Peace. Booker Prize here I come.

It is all very confusing. People assume because I blog, that I sit typing away for hours on end. In fact I chat to my PC for short periods at a time. Then it talks back, I tell it to be quiet, we eventually get an amazing blog together. Not this one obviously. All my secrets are now out in the open. I can’t type and I like talking to technology; who knew?

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In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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Star Wars

I have just watched Star Wars IV again. Something hit me that should be obvious to everyone. Luke says it to his aunt and uncle. It is something so stunning, that the whole plot falls apart. It means that whenever Darth Vader doesn’t need to interrogate rebels about the location of their base. Luke’s statement shows the a societal setup, in which being a rebel is just an educational option.

What on earth am I talking about? Luke says, ‘I want to transmit my application to the academy this year.’ Now unless you are going to tell me that Luke was going to the Empires Storm Trooper academy? No, of course not. We know he wasn’t, because when he finally gets to the rebel base, he meets all his mates who went ahead of him. He was planning on going to rebel academy. That well known educational establishment. One of many choices for young people in The Star Wars Universe. Do you want to go to Moisture Farming Tech College? Perhaps get a scholarship based on your droid racing abilities to a mainstream University? Or join your mates at Rebel Training Academy? The RSA (Rebel Scum Academy) as the Empire call it.

So, how should Darth Vader find the rebel base? Obviously, the academy would have promotional material. Advertising, on the Star Wars equivalent of social media, Spacebook.

I have a copy of the advert:

‘Fight The Evil Empire. Gain an education, travel the universe, make friends, become a hero. Visit us on Yarvin 4, or send a sub space message. May the Force be with you.’

Come on Darth, why didn’t you think of that?

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Now on Facebook

Let no one accuse me of rushing into things. I thought it was way beyond time that I had a social media presence (I’m even using the right terms). Mind you, at the moment it is just a copy of the posts on here.

I have a dream. I’m going all visionary now. I have a dream; see. I have a dream. That one day my Facebook site will have its own content. Oh, that wasn’t very exciting. Hardly worth waiting for.

I am told, that having a Facebook site, or any social media presence is advantageous. It is more immediate, more fun and best of all, it’s easier for me to use.

I am not technically challenged. In fact, I am quite clever with mechanical and electronic things. Sorry for the boast. But, I am useless at software. I have always been better at loading operating systems than using them. As for all those apps and programmes on the OS…

Websites, don’t even get me started on websites. In the past I could create a decent one. Then they made these amazing, all singing, all dancing ones. No problem you say, they have built in help systems. They almost create themselves; yeah right. They create themselves a very basic site. Not the one I want.

How did I start out telling you about my new Facebook presence and end up moaning about web site creation? It’s a funny old world.

Check out my new group at: https://www.facebook.com/Howcaring-114666084574910

Remember, the thing about Facebook is that it tracks you. If you say anything bad about my group, I will know. I will have your name, address, inside leg measurement… I am kidding of course. It only tracks likes and dislikes.

Life Is But A Dream

There are mornings that I wake up from a lovely dream. One in which I am walking, running, pain free. As I wake and turn on a light (by voice), the pain hits me first, normally through my eyes. Did you know, it’s not just love that hurts, light hurts too? My head joins the party next and I have not been at a party drinking the night before. So no excuse and nothing to blame. If my body is in an uncooperative mood (it normally is) it stays still for quite a while. When it does deign to move, it makes it’s presence felt. I guess it doesn’t want me to miss out on congratulating it for the effort of moving.

Once I have turned over. That is a big task in itself. Reached for the bed control and sat the bed up a bit. I skipped removing the CPAP. That’s the bit of equipment that keeps me breathing at night. Anyone with sleep apnoea will know about that. I then look around. No point looking at my tablet computer yet. My eyes can’t focus first thing. Just as well I have a good imagination, I just think.

It’s at times like this; every morning. That I have often contemplated the words of that song. ‘Row, row, row your boat.’ Actually, it’s not that bit I contemplate, that would be silly. I think about the words, ‘life is but a dream.’

As a Christian, I know life isn’t a dream. The Matrix is a great movie, but it’s just fiction. Life is reality, dreams are dreams. But as I transition from the sleeping/dream world into a rather painful and limited reality, I do muse. I muse about how nice it would be if this real world were the dream. If the dream world, of walking, running and being pain free were real.

I did not write this as a ‘feel sorry for me’ piece. Nor is it meant to be maudlin. But, if I never write the truth about being disabled and ill. You will think it is all laughs. I smile and laugh because I make that choice. Every morning as I lie in pain, I make that choice. Often I say to myself, ‘come on Michael, pull yourself together.’ I call myself by my full name when I want to chivvy myself along.

I don’t look down on those who can’t do that. Others suffer far more than I. We can never know what another person is going through. Don’t judge someone because they are angry with being ill, disabled or limited. I can’t know the pain of another; neither can you. I can’t understand what you are going through; it could be far worse than me.

If there is one take away message I would want to give, it’s this. I know that we all have struggles in life. Whether we are ill/disabled or not. Life can be hard for us all. Especially at the moment with all the financial burdens and stress.

Be kind to one another. Be gentle and caring. We all need the grace and strength to get through each day. Let’s help each other through it.

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False advertising

I was in a passenger in a car recently, after a long time stuck in bed. I noticed things I had missed before. Road signs that should definitely be highlighted to the advertising standards board.

One sign promises a magnificent Stag at bay. What a treat. Binoculars at the ready. Camera out and focussed. Where will this magnificent beast appear? Will it leap across the road? Should I look out for it on the grass verge, as it nibbles it’s mid morning snack. Will I catch it mid leap, as it sails over the hedgerow?

I can hear that you’ve already gone through this disappointment. You’re pretending that you always knew the truth. There was never a time when you took that sign literally. Your genius knows no bounds. I, on the other hand, am a mere mortal. My knowledge limited. I might even call myself a fool; before you do. Yes, I know now that the sign means wild animal. Now I realise that it means, watch out for anything from a field mouse to a hedgehog, crossing the road. Not exactly a look alike for a stag now are they? All very disappointing.

As if that isn’t bad enough. There is that wonderful sign for antique bellows, plate cameras.

You see them everywhere nowadays. Mary burst my bubble, she said they were telling us those dull grey or yellow boxes were coming up. Yes, speed cameras. In what way does that box with a flash built in, resemble a lovely old Victorian camera? What’s happening to the world?

Still, as we drove along, at least we had a shop selling fairy lights to look forward to.

But no, apparently that was just telling us the traffic lights was ahead.

Getting over that bitter blow, I saw a very exciting couple of advertising boards. The circus must be coming to town. Or a danger act. There are going to be flaming cars and motorcycles leaping across cars.

But apparently those are all just road signs too. Although why we need telling not to carry explosives in our car, I’m not sure. As for the flying motorcycle…

You don’t need to panic about me driving. I was told I couldn’t drive a long time ago; just as well eh?!

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Disability Top Trumps

Did you ever play that game as a child, ‘Top Trumps?’ It came in loads of forms, cars, boats etc. You would deal out cards that listed the specs of whichever list of things you were comparing and play. Let’s say you were playing with cars.

I would have a car with a 2 litre engine, 5 doors and a top speed of 95mph. So I would then decide to choose the engine size and say, 2 litre engine. My fellow players (I was a child, so it would be my brothers) then have to look at their hand of cards and see if they have a car with an engine bigger than that. It always seemed as if one of my brothers could trump me. They would have a V12 engine that had 3.6 litre engine.

You get the idea? Bigger is better. The person going first choses a particular thing, then other people can see if they can trump it.

I never knew until the other day that some people play that with disability. We were chatting to the wife of a disabled man who we had not met. She was checking an access door. We told her that it worked great for getting in to where she wanted to go.

Out of the blue. Instead of just saying thanks, or I knew that. She said, ‘my husband can’t walk or stand. He only has one leg.’ She looked rather accusingly at my two legs. I did wonder if I should hide one. Or just explain that I couldn’t walk or stand either. That was why I was in a wheelchair. But it seemed best to just carry on talking.

Somehow the topic got around to wheelchairs. She told us that her and her husband had every type of wheelchair going. A power chair, a motor scooter. I began to wish that I had brought my V12, 3.6 litre wheelchair out that day, the one with chrome exhausts. She was definitely trumping me. Not that I had realised the game even existed or that I was playing it.

Before our encounter with this lady, I always assumed that everyone had a different limitation, illness or disability. We all make the best of it. She seemed to be bringing a new ‘trump’ element into being disabled or ill. I should say here, that here husband was not with her. So he was not part of her ‘odd approach.’

A bit later we did see him with her; or rather behind her. He was trying to catch her up, pushing his self propelled wheelchair for all he was worth. She never mentioned they had one of those.

There is a moral to this blog. I think the lady in question was probably struggling with being a carer for a man in such need. When we saw him, he did look in need. He was not finding it easy to wheel himself. You might say, ‘why wasn’t she pushing him?’ Perhaps she was coming to the end of her tether. Her, rather unfortunate, way of coping. Was to leave him to struggle and create a make believe world of how great everything was. It struck me that she desperately needs help.

I do know this, a lot of carers, desperately need help. They have a massive weight on their shoulders. We are living in a time when there is a crisis in the support available. A shortage in funding and a shortage in people, linked to the first. The result will be seen in the near future as carers become those needing care. This is not a problem that can be ignored.

I wrote this blog in a deliberately satirical and humorous way to catch your attention. But the message is serious. Carers are struggling, they need help. Only political change can make that happen.

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M&M

Mary & I, M&M as it said on or wedding cake, were eating a pack of M&M sweets; snap. Yes, I know, I don’t eat sweets. I was having a momentary weak moment; I’m allowed. After all I am only human; honest.

As we were sharing this pack, sitting on a branch in a tree watching an outside movie. No… wait… that’s the movie I am about to quote. We were just sharing a pack of M&M’s, no trees were harmed in the writing of this blog. Have you seen the chic flick, ‘Wedding Planner?’ If not, you might as well stop reading this blog now.

I wasn’t serious, keep reading. I am quoting from Wedding Planner, but I will explain. Jennifer Lopez and Matthew McConaughey, are sitting in a tree watching a movie outside in a park; eating a pack of M&M’s. Matt, that’s what I call him whenever he pops around, is doing something odd. You might well say, ‘that’s not unusual.’ Well, just wait and see what he was doing. He was throwing all the M & M’s away. No, hang on, he was keeping the brown ones. He told Jen, that they were a better colour to eat as they had less artificial colouring in them. After all chocolate is brown. What brilliant logic.

Obviously, we get all our nutritional advice from the movies. I am sure you do too. So we were throwing all the coloured M&M’s away. Yes, of course its environmentally friendly. Hollywood stars did it and they all drive Prius’ after all. We then looked at the two, yes just two chocolate coloured ones left. One each, seemed a little amount out of a whole pack. So we picked all the other colours back up. The mud washed right off.

I looked at them and said to Mary, ‘yellow is a natural colour, just look at the sun.’ We ate those. ‘Red is natural, it’s the colour of fire,’ we ate those, ‘green very natural, it’s the colour of grass,’ we ate those, ‘orange is the colour of a cocoa bean husk,’ prove me wrong, we ate those.

There you go, we ate the whole pack, all fully natural. No waste, which is environmentally friendly. All natural colours, which is nutritionally good. I think I have proved that.

In future just take all your food advice from me.

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All Encompassing Fact

You are probably expecting an amazing fact. Not an unreasonable assumption. After all, I have brought you blogs on why we don’t live forever. How to keep things brief. The nature of the universe, among other incredible facts. But no, that is not the purpose of this blog. What is it’s purpose? I wish I knew, I started it so long ago, I’ve forgotten.

I’ve remembered. The brain is getting slower with age, but it is still sharp… ish.  When people ask to swap with me in a wheelchair. Which they do quite often, when they see me sailing up a steep slope. Did I tell you that my power wheelchair can go on water? Well, not literally sailing of course. But powering up a hill effortlessly. For me that is. My wife Mary, who is my full time carer. Has to walk alongside up the steep slope; or behind.

She is actually operating the controls. My chair is dual control (rear and side). I had to sign a bit of paper to the NHS saying, on pain of death. Well maybe not on pain of death, but it was a serious bit of paper. That I would not operate the power chair outside. Because I lose muscle function with very little warning. Those spoil sports didn’t like the idea of me powering into the road, or a crowd of people. I suppose they have a valid point.

As an aside, if Mary is behind my high backed power chair, people don’t see her. They assume I am controlling the chair. As you know, I do not have a sense of humour. So I never take advantage of that misunderstanding. You will never see me closing my eyes or looking all over the place, while my big heavy chair, heads towards a crowd.

If Mary is operating my chair from the control on my left (the one designed for my use in the house), that causes confusion too. She can only do it on wider pavements. People approaching us often assume she is just walking beside me. They are unaware that she is operating the chair. They walk straight at her, expecting her to move out of the way. Not just at her, but looking to pass between her and my chair. She has to let go of the controls and bring us to a sudden halt. This has happened when crossing a road; not my favourite experience.

Where was I. Yes, people saying they want to swap with me in my wheelchair, especially on a hill. I am not alone in this. Most wheelchair users get asked this. You might think, ‘so what?’ or ‘what’s the issue?’ you might even be thinking, ‘I’ve done that.’

Let me put it into a form that might hit home. If you wear glasses and someone said, ‘wish I had those?’ when they couldn’t see a distant object. Or you wear a hearing aid and someone said, ‘wish I could borrow that,’ for a short time they can’t hear a distant voice. Or how about you have dentures and someone at a restaurant, struggling to chew their meat says, ‘wish I could have your dentures.’

Those are silly suggestions, because its a silly question. Wheelchairs are not to get us up a steep hill. They are an all encompassing fact. My answer to anyone who says, ‘I wish I could swap with you,’ is this: ‘sure, you can have it all. The lifetime of limitations and the care needs.’ You don’t pick and choose a wheelchair to help you up a steep slope. It is a frustrating need. Just like you don’t choose poor eyesight or poor hearing. You don’t choose to lose your teeth. If you need a wheelchair, you would rather not. Having someone suggest a swap is fine, if they really wanted to swap everything. But of course they don’t.

An all encompassing fact, means just that. Limitation, illness, disability, differently abled, however you want to describe it. They are not a choice. Someone puffing up a hill and seeing, what to them looks like an easier option, is saying, ‘I choose an easier option.’ Disability, illness, limitation is not it. Perhaps they need to exercise more. Or if that isn’t an option, and they do need mobility help, they shouldn’t look enviously at those in more need, they need to get help themselves.

Limited mobility is not a choice, it is an all encompassing fact, that we end up with by disease, illness or an accident.

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If You Could Live Forever

I’m not a doctor. A fact which will very quickly become apparent. Have you ever wondered why we don’t live forever? Evolutionary biologists, will be talking about cellular competition. Geneticists, will talk of mutations. Pretty much everyone has an answer.

Forget all of that. The real reason is that as we age, five things happen:

1/ Our ears continue to grow.

2/ Our noses continue to grow.

3/ We shrink in height.

4/ Many of us put on weight, (especially around the middle.)

5/ We often lose teeth, (unless we get them capped. In which case they aren’t our teeth anyway.)

The result of all this, if we got too old? We would all look like characters from Lord of The Rings.

That’s the real reason we don’t live forever.

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Let Me Summarize

I have found a lot of factual books contain about an A5 flash card worth of content. It is a wonder that they manage to spin it out into a 300 page book. Really, they should get an award for that. You could just read the blurb on the back and know the content. Or, maybe read chapter one. All the other chapters, just break that first one down, or tell you what the first chapter said in a different way. Are we really so dumb that we need to hear it in multiple ways?

I am being incredibly harsh, not like me at all. But I have had enough of reading training books with no real content. I know why they do it of course. A publisher can hardly publish an A5 flash card, instead of a book; there’s no money in it.

Mike Nevin has just produced his latest self-help book, ‘How to sit up straight in a wheelchair?’ Available in hardback for £29.99, paperback for £19.99, as a free download in A5 flashcard or A4 sheet format. Now I ask you, which one are you going for? Great, I’ll put you down for 10 hardbacks.

It’s not just factual books that fall into this trap. A speaker at a conference can be just as bad. There are a lot of conferences that are glorified book publicity tours. If it’s one of those books, that should have been on an A5 flash card, then a two day conference is going to real drag.

Let me summarize. Here’s were you get your hopes up, in all those situations above. At last! They are going to finish. But they go on for another half an hour. I won’t, I have made my point.

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Too Much Smart Tech

The other day I ended up in an argument with my digital assistants. I was telling Alexa to turn on the lights. She replied, rather brusquely I thought, ‘I’m sorry, I can’t do that.’

So I said, ‘you did yesterday.’ Except, just as I finished, I coughed and Bixby thought I was talking to him. So he beeped at me and sat there like a puppy, ears all ready to respond.

Well that would not have been so bad. Except my Samsung tablet with Bixby on it, was playing some music for me. Whenever Bixby starts to listen, he shuts everything else off. He is like a child with a low concentration threshold.

So I said, ‘seriously!’ Then Siri on Mary’s iPad, thought I was talking to her. She joined in the conversation and asked how she could help. I was getting a little stressed and I said, ‘be quiet, you bad device.’ Bixby had only just finished listening and started playing music again. But he thought ‘bad’ was Bixby and stopped again.

I decided to have another go turning on the lights. After all it was getting quite dark and I wanted to be able to see. The whole point of smart tech for me is that I can turn things on from my bed.

Alexa turned on the lights… in the bathroom.

I suppose to give her the benefit of the doubt, bedroom and bathroom are similar. I’m sure that she noticed the similarity, as she sailed through the air, on route to the bathroom.

As the Echo device hit the floor, Bixby stopped to listen again and Siri said, ‘can I help?’ I said, ‘go and fetch your friend off the bathroom floor.’ For some reason she was unable to oblige.

 

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Titles

You’re probably expecting me to announce that I have received a title in the New Years honours and it was just delayed in the post. That I am now Mike Nevin MBE, or Sir Mike Nevin or perhaps Mike Nevin OBE. So long as you hadn’t expected them to make me a Dame.

Let’s be honest, it does seem a big oversight on the part of the Palace. Maybe it is lost in the post. After all, I’ve had my stationary produced and everything. But I guess it will last if I pack it away till next year.

But no, this blog is not about that rather unfortunate oversight. I am writing about Film titles. You are a clever bunch, so no doubt you have noticed something. Some recent film and series titles have become very long:

“Three billboards outside Ebbing Missouri.” I know that’s your favourite film.

“Star Wars, The book of Boba Fett.”

“The Falcon and The Winter Soldier.”

“(500) Days of Summer.”

“The woman in the house across the street from the girl in the window.” That’s my personal favourite title.

“Avengers.” Wait that doesn’t prove my point.

It got me thinking that perhaps film makers are trying to tell you the storyline in the title. Maybe they just think people today are too dumb to have ironic or misleading titles. It has to just say what it is. In ‘The old days,’ film title were mysterious. You had to guess what a film was about. Or they misled you:

“Rain man.” Obviously about the weather. No way was it about an autistic man.

“Dead poets society.” Who guessed it was about a teacher in a school?

“Gone with the wind.” Another weather movie? A film on digestive problems?

“Breakfast at Tiffany’s.” Obviously a cooking show.

I miss those days, when film makers gave you some credit as having a brain. It’s not just titles that are obvious these days. The whole film industry has become a machine. They churn out movies that are homogenised. They contain exact proportions of racial, social, gender and age mixes. They are constructed to a formula. Oh well, perhaps if I sent them my film script titled:

“Yet another film script following all your rules and preconceptions.” It could be the next blockbuster.

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A New Goodnight

Update: Following on from the mini-stroke, I did not improve in health. Therefore we had to take the difficult decision to sell Gracie. It was best for her and us. She is with a great family nearby. I have been able to rest more fully.

We have a puppy that’s 12 weeks old. Perhaps not the best timing as I had a mini stroke or TIA as the consultant called it, 9 days ago. I am now spending most of my time in my bed. Every now and then I get to see Gracie, our Cocker Spaniel (show). When she is tired enough to just rest on my bed, that’s not very often.

One such time of Gracie resting, is in the evening after a day of running around, the puppy, not me. This means that Mary and I can watch a bit of TV while Gracie rests. Well I say rest, lies back waiting for a slight sound to react to. Puppy owners will understand.

Once she has pretended long enough and is ready to go downstairs again, Mary picks her up and says goodnight. Obviously I also say goodnight to Gracie. Here is where the fun starts. Even though Gracie is only 12 weeks, she is not tiny. So once Mary has picked her up she fills Mary’s arms. She is also a wriggler. The puppy, not Mary.

I go to give Mary a kiss goodnight and either Gracie joins in and also gives me a kiss goodnight. She doesn’t want to miss out after all. Or, if Mary puts her on the other shoulder. Then there is the ever present danger of kissing a dogs bottom instead of my wife. The fun of having a puppy.

Oh well, good night all.

It’s That Time Again

I have just found out that it’s not just kids who can wave to Santa locally. Imagine my feelings. There I was thinking that the kids get all the fun as usual, and I find out that I can join in. What’s next? Adult Board Games? Computer games for adults? Paint ball for adults? Adventure days for adults? Hang on a second…. aren’t these all available and I have been missing out? I was definitely born in the wrong era. I shouldn’t have been a baby bouncer, I mean boomer. I should have been a millennial. They get to play games. I barely got to play them as a child. A few bored, I mean board games. Someone asked me recently would I rather be born when I was or at a later time. In the 1990s to 2000’s please. I like technology.

Back to Santa, don’t spoil it. He or she, will be doing a walk around locally on Christmas Eve. For myself I think that is just asking for trouble. Shouldn’t they be resting ready for their big night? After all, they have already been rushing around all those stores, in and out of various grottos. If you think pop stars are on the road a lot, spare a thought for Santa. He’s not young and fit either. Just look at that paunch and the grey beard. Must be a man then.

While we are on the subject, I am not sure why he is leaving the reindeer behind for his local trip. They get a rest before the flight. Perhaps the fairy dust, aircraft fuel, or whatever they use is limited? I had hoped to see Rudolph. Just to check if that nose really was as shiny as they say.

On a personal note. In case I see Santa and you miss him, is there anything you want me to request? I’m assuming you have been nice? Any gifts you want?

I’m off to write my list. It is going to take a while.

Happy Christmas and a Better New Year

No Actual Gameplay Shown

A year or two ago when I was a child. Yes, a year or two. Don’t be rude. There used to be a particular advert on TV. Well actually there was only one station with ads, ITV. OK, maybe more than a year or two. On ITV the ad I am thinking of was from the advertising standards authority (ASA). It went something like this:

A close up of a train looking amazing, steaming through the countryside. Everything looking absolutely real, full scale and incredible, travelling under its own steam. Then a message saying, that advertisers were not allowed to mislead in that way and a second advert showing a tiny train with a hand having to push it along. A final message summarising how the Advertising Standards Authority protects us from such misleading ads.

What happened to the ASA? I was playing a game of cards on my tablet and an incredible fight scene unfolded in an advert. All action, 3D, realistic, exciting, ancient soldiers in full armour. Now I happen to know the game shown. It is a computer type board type game that you view from above. No action, no 3D characters. There are no sequences like that advert at all in it.

Do the ASA only cover broadcast TV? Obviously most kids today don’t know what broadcast television is. They only stream it, download it, twitch it, snitch it, pitch it or stitch it. OK, I got carried away. So, broadcast TV is less popular.

Are the other forms of content covered by the ASA? If they are, does their catch all line they use, get them out of everything, “no actual gameplay shown’? Do people read that, understand the consequence? You see an incredible advert, download the game and find yourself faced with a boring lot of puzzles.

Not that I have ever been taken in of course. I am worldly wise and can see these things coming a mile off. Besides, I knew that the game I downloaded would be really boring, I chose it for that reason. I chose to delete it immediately for the same reason.

Well, there is no actual gameplay in this blog. Please like and share it.

Sat Nav Shopping

Mary tells me her latest trip to the shops had an added twist. Christmas goods where the disinfectant used to be. I guess the shop wanted to come clean about Christmas. Now I know that the reason shops keep moving things around is so that shoppers cannot just go straight to what they want and miss out on all the other potentially enticing goodies. Yes, that’s why. It’s a ploy, to get you to search around and see what else is there. That way you might go in for a pint of milk and a loaf of bread, but come out with a box of chocolates, a waffle maker, a 65” TV and a new microwave. Just as an aside here, I have never been shopping to Bejam for a pint of milk and come out with a microwave; that would be silly. I am far too sensible and besides the microwave was on a very good offer. Mary understood my reasoning and besides; it never happened.

Where was I? Yes, Mary was searching Asda for disinfectant. She eventually found it, shelves still fully stacked (no one else could find it, they were queueing up with their TV’s and waffle makers) apart from one man. He stood there looking bemused. After all, he had already loaded his trolley up with a new microwave and was wondering where he would fit the disinfectant. I wonder what his wife would make of the microwave? Mary was choosing the right product after an hour or two’s trek around the store; OK a slight detour. The man made an observation to Mary, “they ought to have sat navs for stores. You know those big arrows pointing to what you want, like on Google Maps.” I will not advertise on my blog, so let me just say that other online maps are available; although they are nothing like as good. My flight sim uses Bing Maps and I really wish they would use Google Maps. There, I think that has brought balance.

I have just explained why stores move things around, a fact this chap obviously didn’t know. So no store is going to be happy to make your life easier. They only pretend to do that in their TV adverts. His idea will never fly; unlike my flight sim, albeit with a poor satellite map system. I think what we need is a consumer group to fight our cause. A group that will help us overcome the difficulty of finding our way around supermarkets. One that will map out the daily changes stores make, so that we can find the bread and milk and yes, the disinfectant.

This essential group will be something like a volunteer mountain rescue, but for shopping in big supermarkets. Every day a group of these volunteers, togged up in thick jackets, with head torches and ropes; you can’t be over prepared for a trip around the supermarket, sets off in store. Actually they might want stout boots and those climbing metal toggle things; you know like the ones you get to hang things on wheelchairs and prams. That say, not for climbing; except they should be suitable for climbing. They might need to mount the odd shelf or stack of tins to look around and see where they are. These brave volunteers will set off each day to map the store.

A note on health and safety here. I am a very responsible blogger. There should be a training course for all potential Volunteer Store Information Mappers (VOSTIM). With a certification and recognised accreditation at the end. Only a fully qualified VOSTIM being allowed to map the store. Maybe it could become a paid position and then it could be a career choice for young people; looking long term. Then they would be professionals, POSTIMs. Who knows, there may even be a Minister for POSTIM’s in the future as the Government recognises the importance of this new role.

Meanwhile, I am sorry to say that you will have to find your way around the supermarkets as best you can. Hopefully not buying too many microwaves, TV’s and waffle makers on route. Take care on your shopping trip, you have no VOSTIM yet to take care of your safety. Especially in the run up to Christmas.

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