The sun has got its hat on

I am sitting in our garden well wrapped up. I need to be today, it’s a little bit chillier. The sun keeps putting its hat on. Of course when that song was written the writer was meaning that the sun was looking fine and putting on a good show, whereas I mean it’s hiding under a big sombrero. One minute I am sitting in blazing sunshine, virtual drink in hand, wearing a virtual mankini. No you don’t want to see me in a mankini. The next I am huddled up under my blankets. Well actually nothing changes, I just go from feeling hot to cold and this iPad screen gets harder to read.

As I sit sunbathing I am reminded of singing “The sun has got its hat on.” there’s a treat you are all glad you missed. It was back in my Nailsea Musicals days. I wore a straw hat and pranced around, yes pranced! Ah, the sweet memories, how glad I am they are past. Musicals there is a theme to think on. I bet you are all glad I am sitting in the garden.

I was watching the 25th anniversary edition of Miss Saigon last night. It was first put on in Drury Lane in 1989, I saw it in Bristol with my daughter for her birthday treat. Watching the film version brought back a lot of memories. I remember thinking what a great musical it was, what fantastic singers, wondering where my tissues were, and how on earth they got that helicopter through the stage doors. Not to mention that giant statue at the back.

I watched another musical the day before, Phantom of the Opera. I knew the music, but had never seen the production before and didn’t know the story. Somehow I had even missed reading the original book. Oh wait, that’s because I don’t read French. What an amazing story. But a story about an older man who controls and manipulates a younger woman, not what I expected at all. There are a lot of sexual overtones. No one ever seems to ask Christine what she wants. She is an object to be desired and used. Which takes me back to Miss Saigon. Kim is an object of desire, Chris the GI who desires her, uses her and then leaves her (ok he was forced to leave her, but did he really have no way back). Is it any wonder he chooses his new wife over her at the end? His love for Kim was passing. Have I stirred up a response?

Does love exist in either of these musicals? What is love anyway? It seems to me that love is gentle, kind, forgiving, generous, caring, understanding, often sacrificial, love never gives up, love is a choice and not just a feeling. That sort of love exists in Miss Saigon, Kim loves her son Tam sacrificially, passionately and with great care and generosity, she also loves Chris over three or more years; she doesn’t give up on him. Chris gave up on Kim after just a year!

In Phantom there is suffering, sacrifice and pain on the part of the Phantom. Does the Phantom love Christine or does he just want to possess her? Is the first time he feels love when he lets her go? There is love between Christine and Raul of course.

This musing in the half sunshine has a lot to answer for. If you have watched either of these musicals I will leave you to comment or just think about what I have said. If not, then ignore me, you probably will anyway. I really must stop watching musicals…Mama Mia, here we go again! Just kidding.

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Living in a bad Hollywood Blockbuster

Sometimes it feels like we are living in a movie…

I was about to go to sleep last night when I realised it’s like I am living in a bad Hollywood Blockbuster. Think about it, the plot is dreadful and a bit unbelievable. Let me lay it out with a bit of artistic license:

A few years ago China starts to become a world power. This unexpected development throws the status quo and major world powers find themselves in debt to China. Election results in the USA are influenced by social media and possibly Russia. An unexpected result brings a suspect businessman into power. His misogyny, shady business deals and political ineptitude are rolled out one by one over the years as signs of his unsuitability, but somehow nothing sticks. Even an impeachment hearing fails to prove his guilt.

In the UK Trumps physical twin rises to power. He is so adorable, almost cuddly, everyone loves him, even those who see him as inept and a poor leader. He has been massively helped by the part played by his father on reality TV.

Boris Johnson has found himself the heir apparent following a series of unprecedented political events that bordered on farce. If these events were laid out in a film script they would be thrown out as unbelievable. I lived through them and thought the same. Then in an election Boris proves how much he is loved or perhaps how much the other guy was disliked. He takes control of a country divided between those who see the future of Britain in its past, separate and glorious and those who see Britain as strong in unity with the EU.

Just at the point when we are about to count the financial cost of separation from the EU, the world changes. It’s that classic movie turning point, the dramatic driving event. If it was a movie the virus would figure heavily on the posters.

China, the growing superpower becomes the epicentre of a pandemic. Nation after nation is shut down.

The effect of shutting down countries and governments is two fold; 1/ economic disaster, which masks all other economic impacts (for instance leaving the EU in the UK but each country has its own) 2/ The executive in governments has taken control over the elected officials. A perfect excuse to delay or halt elections. Add to that China is seen as the cause of all this destruction. Anger can be focused away from home governments. Countries come together internal unity.

Even during WWII the UK was not as controlled as it is now. Churches shut down, gatherings of more than two people broken up by the police. People fined for unnecessary travel. This certainly feels like a bad movie. Looking at web cams of deserted locations around the globe certainly looks apocalyptic.

If this was a bad Hollywood Blockbuster then the blond twins on either side of the Atlantic would be in a secret alliance. The impact of the virus would be deliberately being exaggerated in order to gain political control. The origin of the virus itself would be suspect. But of course we are not living in a Hollywood Blockbuster are we. So these things cannot be the case. It does all feel very odd, strange timing and a little worrying the way governments are controlling the people through the police. Let’s see how this all plays out. The movie has not yet finished.

Not yet the end

Personal Space

(This is lighthearted not serious)

Even before I was in a wheelchair I liked a lot of personal space, space around me. The current government rule of 3 metres seems to me like a very good distance to keep. People get far too close normally, especially to a wheelchair. It’s as if because I’m in a wheelchair people see it as a bit of furniture that they can lean against, hold onto or stand next to. At public gatherings I think people tend to crowd my personal space far too much. So a three meter exclusion zone sounds like a great idea as a permanent plan. Before you all start messaging me with angry responses hold your horses. I am jesting… a little. It’s true that I like a bigger personal space than most. Besides I think 2.9 meters will be fine, I don’t need the full 3 meters. There is another area of social distancing that isn’t a hardship for me, I am not a hugger; except with my wife and family. I never was, so giving people a hug is not something I miss. OK hold off on your abuse and anger, I do have my tongue in my cheek. I have a tendency to get a lot of very serious responses to my blogs. Please read them the way they are meant; a bit of light hearted relief in a difficult time.

Talking of personal space, I have changed rooms, I am now in a room that has some privacy and access to our wet room… hurray! Gradually I am having things brought near to hand and organised. The interesting thing about gathering things from multiple locations is you discover just how many you have of different things. Not knowing I already had sticky tape, I have ended up with about 8 rolls! I wish that was all that was duplicated; why have I got 6 cans of shaving foam? Mind you I also found things I thought were long lost. Screen protectors, power leads, Lego, hang on Lego? Yes Lego, I do enjoy Lego technic. I even found missing DVD’s, very helpful for entertainment and magazines; ones about my Raspberry Pi. No, you don’t put cream on it then eat it, it’s a tiny computer. It was designed as a cheap and fun way to learn about programming and electronic/PC interfaces. True I don’t do much with it anymore, but I like to read about what I could do and used to do. It represents a past hobby.

Lying in my new bedroom I have a new bookshelf at the base of my bed. It has a shelf with models I have made over the years. A wonderful looking wooden marble run. It would work brilliantly if it wasn’t wood, wood tends to be too warped, well that’s my excuse, it’s not how I assembled it. Then there are my Lego technic models. Also on that shelf are two opened up hard disk drives. Why you ask? Well back in the 1980’s when I was so young I hardly remember. I was working (child labour obviously) in the computer industry. My boss, the managing director had an open hard disk drive on display in his office, in a glass case with spotlights on it. At that time they were very expensive. If you have never seen inside one they are like mirrors surrounded by electronics and look really cool; honest. (See the photo on my blog site) OK so they are really cheap and commonplace now, but they still look good. I had a broken couple of disk drives that I had opened and displayed some time back, they are displayed on my bookcase. A reminder of years gone by.

Personal space is such an interesting concept. It means time and space to find restoration and healing plus it means the space around us when we meet others. So it’s something we need physically as a place and it’s a concept of the space around us that we all have and which varies. Which means this ‘lock down’ will be much harder for some than for others.

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Am I dreaming?

In the Hollywood Blockbuster The Matrix, Neo finds out that his whole world was a lie. He had been asleep and machines had manipulated his reality. Nothing he experienced was real.

Dreams are interesting because they can be so real, that when you wake, just for a moment reality and dream blend. Which is which?

Reality is a very odd thing when you think about it. How we see things and what we believe about things is so shaped by our beliefs and past that I started wondering if we all had any common reality. What a stupid question eh? It’s like that old chestnut about whether I see colour the same as you see colour. How wide can I apply that. Everyone experiences pain differently we know that. For some people the slightest cut causes them to double over in agony, for other they carry on walking with their arm hanging off; I exaggerate for effect. But you get my point, we all have different tolerance to pain. Maybe that’s because we all feel it differently. Maybe we all experience everything else differently.

Have you ever been hung over? I haven’t but I have been told that everything is super sensitive, light, sound, smell, and your head thumps. Well that’s a pretty good description of a migraine. I also know people who experience super sensitivity to sound and light a lot of the time. If we all experience things differently, that shouldn’t be a surprise. We don’t have a common experience of reality, but a different one.

What about intelligence? What if it’s just a different way that some people’s brains work; faster, sharper. How about spacial skills. I know people who struggle with anything practical and yet they are brilliant intellectually and vice versa. What if it’s just all different ways we experience the world. One person sees everything in physical, practical ways, another in abstract, numerical ways. Most of us are a mixture. Could it be that the relative intelligence and practical skills of people are tied in to the way we each experience reality? Our way of perceiving the world changing our way of interacting with it.

I sometimes find that my brain just seems to stop and go dark. As if everything switches off and goes into idle. That can happen for minutes, hours or days. Other times it runs at great speed and I can’t catch up. I can think fast and clearly. My brain changes day by day, minute by minute, so all I have said above is not a constant.

There’s an old song “Do you see what I see?” It seems to me the answer is no. You see something different, neither better nor worse, just different. Your reality and mine are not the same. As crazy as that sounds. We live in the same world, but we experience it differently. I can try to grasp something of what you experience and you can try to grasp something of what I experience, but you cannot fully understand it. When we look at the life of another human we are seeing it and understanding it as if watching a film or reading a book; second hand and disconnected. Empathy is the ability to understand another’s feelings and experiences, in fact we can only partly grasp them.

I am not saying we should not try and understand others. Nor am I advocating living in a bubble. I do not uphold a selfish life. My only aim is to highlight the difficulty of understanding another. We know that translation from one language to another is hard. Words are always tough to find equivalents for. We just forget that even in our native tongue we can mean different things when we say the same thing. So it is with our experience of reality, others may try to understand. They may feel they have common ground. But there will always be a gap. If we remember that it helps. There is a great frustration when someone says, “I know exactly how you feel.” No one does, often we don’t even know that ourselves. At best we can try to understand each other, be compassionate, caring and kind.

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…and a great parking place

There are a lot of assumptions made about disability by able bodied people. A common one is how great it would be to have a free parking space near the shops. Let me debunk that one first. Most councils now charge for blue badge spaces in car parks and they are not always nearer to the shops. Yes, it’s true, if you can find space on a yellow line you can park for a limited time. But that’s a big if and you still can’t block roads or cause problems. Probably the biggest advantage should be blue badge spaces in supermarkets, but often they are full or being used by non badge holders. They don’t tend to be policed well. So you don’t really get a great parking space.

Another assumption is that you get lots of Government cash, benefits, grants etc. But what that ignores is the cost of everything with a disability tag. Put the word disabled in front of it and any product is loaded in price. Holidays, when possible at all are complex and often expensive. If, like me you need hoists and wet rooms, the property availability is short and price loaded. Travel should be the same price as for able bodied, but sometimes it’s only possible by taxi. When I was able to walk I used to walk for miles, often choosing to park a long way from town centres. If you can drive then often cars need adaptation. Yes there is Motability which can provide a car, but many people don’t realise that is paid for from your disability benefits, it’s not a free car. So yes there is extra government money for disability, but it doesn’t cover all that you need for such a limited life. You might argue that other countries have even less. If that is your way of looking at life, then so be it. I would rather aim higher.

Then there is the assumption that being in a wheelchair or a bed must be a restful option. The number of times people have looked longingly at me when I have wheeled and they have walked along and they say things like: ‘oh you’re so lucky, I wish I could ride along.’ Or  ‘can I have a lift?’ Disability is a complete package, pain, inconvenience, limitations, frustrations, and everything that entails. You don’t get to just choose the riding along in a wheelchair bit. Or lying in bed bit. In fact before I was ill I never managed to stay in bed very long, except to sleep. I never lay in, so being in bed all the time is a trial for me not a luxury.

So if you are thinking disability sounds desirable or a bit of a doss; think again. No one in their right mind would chose a long term illness or disability. People might pretend to be ill to get benefits. But such cases are very rare. Much rarer than they appear from the frequency of reporting. It is much more common for people and companies to cheat on their taxes and defraud the government in other ways. No we are not to be envied, but I am not asking for pity either. What’s needed is respect and understanding. No one can fully understand another without living their life; that cuts both ways I know. I respect and understand the hard work of those who are able to work. Respect is a two way thing.

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