Month: Aug 2019

Macro and Micro Society

I was musing today, as you do. About the way we share our lives online. I suppose that’s what I am doing now. Why is that such ‘a thing’ these days?

In the past we lived in small communities and everyone knew each other. So if we felt lonely or sad then people were around to chat to. In these days of isolation, the internet or more specifically social media has become our community. Society has become macro (world wide) instead of micro (local). The whole world is our neighbour or friend, a listening ear, advisor, confidant, shoulder to cry on etc.

But there is the dark side, in days past people who offended a community were put in the stocks where they were spat on, had rubbish and excrement thrown at them and where they were generally abused. In these modern enlightened days we look down on such barbaric behaviour. Instead we carry out our abuse online, we pillory people in print. The most interesting modern adaptation of abuse is the way we have carried forward public torture into a TV entertainment. Now either celebrities or the public are made to suffer a series of humiliating trials and then we take part vicariously through social media. We pillory, abuse, accuse, insult and occasionally defend these victims. What a curious enlightenment we have.

I offer these thoughts not as judgment, I see myself caught up in this new reality. It’s merely an observation.

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Watching the world go by

It must seem pretty idyllic from the outside to be in bed a lot. I know a lot of people say to me, when I am in the wheelchair “can I have a lift.” They are jealous I get to sit down rather than walk. The other mans grass eh?

I was sitting in my wheelchair today watching my wife, who is neither tall nor strong, hefting heavy stuff around in our garage. She was sorting it out, because it leaks. I was saying what needs keeping and what can go. Can you imagine how hard that was? Not just watching my wife struggle and not being able to help, but also seeing the things that we were getting rid of. Wood we had left over from projects I had done in the past. Car bits being passed on, we no longer have a car. Decorating bits being got ready to pass on. Hopes and dreams can be tied up in things. We invest ourselves in the things we do, the things we plan and the jobs we carry out. So when we are left limited and watching the things that we gathered together, worked with and created being disbanded or thrown away; that is so hard.

Earlier in the day we had help from someone to carry out some jobs. A handyman I paid to do some bits that would have been both enjoyable and easy for me in the past. I was being washed and dressed by my carer at the beginning of their time. I went into my chair to see how things were going when I was dressed. I wanted a wi-if camera fitted. Picture how hard this is. I as trying to explain how and where to fit it, I can’t access the room that the wiring will go into, I can’t reach where it will be fitted. So I can only point and go by memory of what the inside of the room is like. If I had been fitting it I would have popped inside and out, checking the location I wanted in relation to the inside. It’s all very frustrating.

I used to be a very competent DIYer and I enjoyed it. I could build stuff, decorate, fix cars, fix electrical and electronic stuff, yes you’ve got it I was a genius. OK so maybe not a genius, but I was a jack of all trades and master of non. I could turn my hand to many things, but I wasn’t an expert. I did a reasonable job of most things. So it’s hard to watch others do things for me, that I would rather be doing.

The way I have learnt to cope is to try and switch off to it all. The more I focus on what I cannot do the more frustrated I feel. It is only on occasions like today, when I am forced to sit watching my wife struggle that it’s hard to ignore. Oh and next time you are passing me by and you think, ‘I wish I could have a lift in a wheelchair, it looks much easier than walking.’ I will swap with you, but you get the whole package. With life we don’t pick and choose. A wheelchair may be an easier way to travel, but it comes at a cost.

As I sit watching the world go by, I try to not let my frustrations get the better of me.

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The things people say

I am no angel, no really, I can hear you all objecting and saying Mike you’re perfect. Oh, that was just me. So I know that I say all the wrong things, very often, yes, very, very often. So, I am saying this in full understanding, but nevertheless I find it amazing.

We were on a respite holiday in Dawlish last week. Most days, weather dependent and in spite of Mary having a cold, we made it to Coryton cove for a coffee at the open air café. It’s lovely to have a coffee overlooking the sea. But, one day when we arrived we were greeted by a chap sitting at a table having a coffee, who said:

“My friend has a wheelchair just like that. He is quite spasticated.” I don’t know if he felt extending the word made it better; it didn’t. Or if he thought I wouldn’t see the connection to me; I did. Some people don’t think. I know he was trying to be friendly, but really that isn’t the way.

Another day we were waiting for Mary’s dad to join us. Mary got chatting to a local workman. He was sorting out the grass. She was admiring his handiwork. Note three things 1/ I was next to Mary. 2/ I was obviously with her. 3/ I was clearly in a wheelchair. The man started talking about how he had a bad back and was due to retire soon. His back was crumbling and may lead to him being unable to walk. He said:

“I don’t intend to end up in a wheelchair, I couldn’t cope with that. It would be awful. Being pushed around. There is no way I will choose that.”

So he was suggesting being in a wheelchair is a choice and that it’s a lesser condition to be in a wheelchair. All while I am sitting listening to him; unbelievable. Perhaps he thought I was deaf, or stupid.

It’s easy to say the wrong thing. I started by saying I do it all the time. But I think you’ll agree these two examples are a little more extreme than most. What does happen a lot are those little comments that we just don’t think about and probably don’t even realise we’ve said.

Someone once asked me if I remembered being normal. I hadn’t realised I was abnormal. Often I am asked if I am alright, just when I am sitting in my wheelchair. Now I hear you, that’s just being kind and thoughtful. But, do you ask the same question of someone sat on a chair? It’s a fine line, I realise, after all I know that I am in a fully supported wheelchair with shoulder straps, I have a neck brace and head support. So if Mary pops into a toilet when we are out and about or into a shop. Those five minutes that I am apparently alone, I may appear very vulnerable. I suppose I am and certainly if I had a collapse in that time I would be totally vulnerable. It just feels odd, if I am sitting, feeling fine when someone says, “are you OK?” I start to think, “why don’t I look it?” Ask yourself how would you feel if people kept asking you that. It does happen quite a lot. Even if Mary steps a few feet away to take a photo.

Of course the other extreme is worse. I have had people assume that I can just get up and walk. I guess they assume my wheelchair is one of those shopper buggy’s. Once I had a very odd conversation with an assistance person on a train. I should just say, this is very unusual. Of all the times we have had assistance, I have always had really understanding people. But for whatever reason this person was not. Maybe they were cross because they had been given the wrong information about my location on the train. So the train had been held up and initially the wrong person got off then back on the train. An old lady who had assistance booked for the next station and assumed they knew what they were doing. So on finally arriving with me they were not in a good mood. Instead of putting the blame where it belonged on the booking agent. They suggested that somehow it was my fault. After all as they said, “many disabled people can get out of their wheelchair, so how would the agent know I cannot.” You see the reason I was in a different carriage was because I had to have a wheelchair space and the agent had mistakenly booked me an ordinary seat. So the train manager had moved me at Taunton, then supposedly phoned Exeter. I had, of course, made my need of a wheelchair space clear to the assistance booking agent and I use the system a lot anyway so it’s on my records. But this person on the train would not accept that and still thought it must be my fault. Mary and I were made to feel as we had done wrong. I will repeat, this is the only time that has ever happened. But it’s another example of how people can say really odd things. To suggest I have a choice about whether I can walk or that I would not tell the booking agent I can’t is ludicrous. If the person had not been so stressed they would have realised that.

One last strange thing people say. I have been called ‘cute’, OK, that’s no surprise after all just look at the photos of me. It was said of me by a young girl when I was in a collapse, she said to Mary, “Ah, he’s so cute.” Maybe she thought I was a big baby? Mind you when I am in a collapse people often think I am asleep and comment on how peaceful I look. It has taken me a lot of time and practice at meditation to feel any peace when I cannot move. So no, I am not at peace in a collapse. Still at least I look cute.

People say odd things, we all do. I guess the point of this blog is that we all need to put our brains into gear before we speak. Me most of all.

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Inspiration versus concentration

I was trying to work out the other day why it’s so much easier for me just to write what comes to mind, whether that’s fiction or ideas compared to writing logical thought and complex notions (as with essays). It’s the difference between inspiration and concentration.

I can just put metaphorical pen to paper and write. Or literal finger to iPad. When we were on holiday for a week, I wrote 3 short stories and a 20 min playlet. Ideas just flow from my mind and onto the paper. I don’t find I have to work at it.

One of my carers asked me, “did you rest as well?” For me writing isn’t tiring if it’s just writing what I think, as I think it. Writing is tiring, when I edit it afterwards or when I try to produce something specific or create an essay answer.

The easiest thing for me to write is fiction. Story ideas just flow straight out of my brain and onto the paper. You get an insight into the world I experience inside my head, poor you. My imagination constantly creates imaginary worlds. Being limited in what I can experience in physical reality means my brain creates a world that fills that gap. I have noticed that since the level of my limitations have increased, my imagination has increased and hence my amount of fictional writing. But that was only able to even start after the new medication that increased my concentration. Before that my brain was far too sluggish and foggy.

Some very kind people come up to me or my wife in Wellington and Taunton and say they read my blog. They tell me that they find it helpful and even inspirational. I find that humbling. I just write what I feel and think and hope it may help. When I hear it impacts people that amazes me.

The reason there has been a long gap between posts on this blog site is because I have been putting together a book of short stories that I am about to publish on Kindle. Most are completely new Hilda stories and therefore comedy. I have had a funny summer, in more ways than one. Every humorous incident I have stored up and accentuated in the Hilda stories. I only have the time and energy to do one or the other.

My writing then is mainly inspiration with only the need of a little logic and concentration to edit it at the end. Most of what I write is written in one go with no breaks and only brief editing at the end. I can tell, I hear you say. But that’s ok because it’s a style that works for me and I would recommend it, if you want to start writing. Or even if you already write but find your style stilted or heavy. Inspiration is the way forward with a little bit of concentration needed to keep it on track.

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Mirror, mirror on the wall

One big advantage of being in bed a lot of the time is that I don’t see myself in a mirror very often. Recently we were on holiday in Dawlish at a convalescent hotel, it works really well because the rooms have call bells and a nurse is on duty. Two of the rooms are accessible enough for my use. I can even wheel my wheelchair into the wet room. Unfortunately they don’t have a wheeled commode I can use to have a shower. For our efforts in that direction read my blog “An unusual request from Amazon.” But I can wheel in to the sink to wash my hands, a small thing you might think; not to me.

Above the sink is a mirror, I don’t usually get to see myself in a mirror. So imagine my shock when I saw the face staring back at me. Is it the youthful, rugged, handsome face I picture in my mind? Of course not. It’s a fat old guy with hanging jowls and wrinkles, little hair and what there is being grey. Chubby little cheeks and generally a worn looking old face. Who is this! Oh, it’s me. At least when I’ve seen photos of myself they are either distant, poorly lit or retouched automatically by the phone. A bathrooms harsh light and big mirror does none of that, it just shows truth. The unvarnished, glaring, literal truth.

Mirrors are useful things, they reflect back at us the things in front of them. They don’t judge or modify, so they tell us the truth and we can work with that. But we are so used to our modern tech that we probably don’t even realise that most modern phones automatically adjust photos by type. So a face is recognised as a and the phone automatically treats it as a portrait which is then enhanced, softened and beautified. Even when that isn’t automatically done, often people do it themselves. The the image we end up presenting to the world via social media is a mask. We don’t do reality any more.

I have looked at some peoples social media photos against the person in real life and wondered who they hired for the social media photo. Mind you people probably think that about me. No, reassurance kicking in, I have been recognised from my blog photo by people who don’t know me. Image is so important to us, how we see ourselves and how we want to be seen.

What a lot of people may not consider is what a wheelchair user thinks about their image. Don’t we care what we look like, because after all don’t we look like dorks anyway, wrapped up in all sorts of coverings, all sorts of bags on the side and back. Supported seating, special controls. Yes I can call myself a dork, it’s only discrimination if you do it. Have you ever wondered what Stephen Hawkins must have thought about how people viewed him? A brilliant brain in a broken body. We do have feelings about how we look, we just don’t have a lot of choice. I was saying to one of the wheelchair technicians how lacking in style wheelchairs are. He said “they are NHS after all.” What’s that got to do with it. The NHS pay wheelchair companies a fortune to make them wheelchairs, they just need to specify ‘make them look nice too,’ it wouldn’t add cost if done at the design stage. It’s all about motivation and political will.

I obviously cannot speak for every wheelchair user. Apart from anything else, some of them look very cool, in their swish wheelchairs. I can only really speak for myself. I know when I go out on a summers day, wrapped up as if it’s winter, because I feel the cold, I look naff. I don’t know what the weather will do later and I can’t update some things, so I dress for the coldest possible. Plus I don’t wear shorts, partly because I don’t believe in inflicting my legs on unwary passers by and partly because of the conveen leg bag that would then be on full show. I know some wheelchair users have got beyond such embarrassment, I haven’t.

I think that fully supported, tilting power wheelchair user and cool looking are mutually exclusive terms. So I am thinking there needs to be a new perspective on this. We need to be the trend setters. After all, why not? If it can be fashionable to have your underwear showing and the clothing ripped and worn, why can’t fashion become visible urine bags, inappropriate clothing for the weather and all the other indignities we have to put up with as wheelchair users. Yes, I think I can cope with being a fashion icon. Wheeling down the cat walks of Paris and London:

Imagine the scene a Paris cat walk, cameras flashing, TV cameras following every move, crowds packed in, a commentator announces:

“Mike is sporting a baggy pair of sweat pants in fetching blue, the sweeping flow of blue nylon with inner liner checked cloth is actually a cunningly disguised waterproof cover, that flash of red is the inner hood of his coat, highlighting his head. You will notice the sky blue bag draped at a jaunty angle on the rear, and the way Mike’s legs are wrapped completely within the faux fur lined foot snuggle and yet the zip is left open to show some of the interior white fur lining. Adding to the whole effect we have thrown in a smattering of alternating colours and textures by adding padded cushions on the headrests and hanging brightly coloured bags on the sides. These side bags, which we have called “multi purpose fashion panniers” are available in a range of colours and styles to suit your tastes. As a humorous and yet functional addition Mike is now demonstrating the water bottle holder attached at a slanty angle on the side arm. As Mike spins round at the end, oops careful there Mike, there’s no sides on this stage, I think you’ll all agree this is a fashion we will be seeing in the high street chains soon. You will be jealous if you have no wheelchair.”

Some of you know me well enough to know what a joker I am. But I am making a serious point. Being in a wheelchair you can feel like a Wally and you don’t see yourself very often in a mirror to really judge. But we are aware of it and I for one do like the idea of looking a bit more stylish. Even if such a thing is impossible, even before I was in a wheelchair. So maybe we should set the trend for a new fashion style. Who knows maybe wheelchairs will become the new must have fashion accessory, just like people who wear glasses just for style reasons.

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The problem with hedonism

(This is about care in it’s broadest sense)

On the side of a Ryvita packet I read this: “There aren’t any rules, well maybe one, do and eat things that make you feel good.”

What’s wrong with that I hear you say, after all, “I’m worth it.” I think there is only one problem with hedonism, life becomes all about me, my pleasure, my desires, my needs. The highest goal in life, its ultimate aim is to fulfil those needs. I’m on a sticky wicket here aren’t I? because you might be thinking, that’s right, life is about that. Why shouldn’t it be?

OK, so let me take a step back then and appeal to anyone who has a loved one. Where does your loved one come, by loved one I include child, parent, partner or friend. Where do their needs come? Are they as important as yours, more important, less so?

Let’s be hypothetical, scientists call these things thought experiments. Let’s have a thought experiment. In this scenario your loved one is in danger, the only way to rescue them is to put yourself in danger. What do you do? In a hedonistic philosophy the highest aim is your comfort and your needs, so the obvious answer is you do nothing. But I would think most people would put themselves at risk to save a loved one. Most of us are actually quite sacrificial when it comes to love. Most of us are not true died in the wool hedonists. It’s an attractive notion, but we don’t fully endorse it. We have this inbuilt feeling that we should love one another.

Why is this in any way relevant or important? Because how we think about and react to others is the basis of the kind of society we have. If everyone really does only think about themselves, then we have a selfish, self-serving society that is little different to a jungle. Everyone fighting for dominance and possessions. We really are just a bunch of animals. But, if we act in love, not just towards those we know, but wider. If our care extends to a wider need. If we see the need around us then we are not in a jungle, but truly in a society that cares. A caring society is actually quite a good place to be, it flows out to all of us.

The trouble is we are so used to political spin and clever talk that we miss truth and heart. I am not being party political, nor am I trotting out ideologies. We have lost sight of each other in our society, because we have been convinced that we are the most important thing. Fragmentation has become the rallying cry of the last few generations. Self has become its motto. So that hedonism, a focus on our needs, desires and wants has become so much part of who we are that we can see an advertising slogan on a pack of Ryvita and not realise the selfish basis of its origin. We miss the selfishness behind so many of the things happening around us. Me, me, me becomes our focus and we become blind to us or them. Of course we need to love ourselves and care for ourselves, but not stop there.

If ever we needed to wake up and look around us, it is now. Stop looking only at ourselves, stop focusing only on what we want and see how our country, our world is fracturing. We need to open our eyes, ask ourselves hard questions. Are we being caring and loving to others or are we being selfish and self serving? I don’t say this as someone who is unselfish and outward focused. I say it as someone who realises that I need to change, that we all need to change if we want a world that is good to live in.

There is a lot at the moment about climate change, or brexit, or pollution or immigration. But in the end everything comes back to one thing, where is our focus? If it’s on ourselves, that will decide our priorities on all these things. If it’s on others then we may be surprised how that changes our viewpoint. I don’t have all the answers, but I know this, looking just at my own need is not the answer. Yes we need to love ourselves, let’s not stop there.

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Not with a bang but a whimper

There’s some classic lines in one of TS Elliot’s poems, The Hollow Men:

This is the way the world ends

This is the way the world ends

This is the way the world ends

Not with a bang but a whimper

When I think about those words it reminds me that the problems in the world are often undramatic and unimpressive to look at, but devastating to individuals. Think of a family starving behind closed doors, or a homeless man dying in a back alley, or a child being abused in a house unseen by others, or a person struggling with chronic pain, or someone feeling suicidal and not talking to anyone, or a lonely person sat in a cold dark room unable to pay their heating bill, I could go on and on. These things on there own are each devastating, destructive, sad, awful, and yet they are not normally front page news or made into best selling books or Hollywood movies. They are everyday stories of misery and hurt. Most pain, sadness, illness, abuse, hunger, poverty and need is like that.

The reason it impacts me is because it puts in perspective my own suffering. Not only is it part of a wider picture of suffering in the world, but it is not news. Yes, my limitations are a problem for me and my family. But that is true for each case. It makes me want to look outside myself to others and say, ‘this is not all about me. The world doesn’t revolve around me.’ That is the cry we should all make, it’s not about us. It makes me want to see a community that cares and wants to make a difference.

Cut off behind closed doors. We have become a nation of selfish people, focussed on our own needs. We need to look outside our own front doors, look to the suffering happening to those around us. I am challenging myself on that, not only others. I do not say this so that people would respond to any need of mine, but so that each of us would look to the needs around us.

Where are the hungry, abused, those in mental and physical pain, lonely, cold, and needy in our community. What can we do to help? If you are already doing stuff, brilliant, great, encourage others. If not what can you do? We are too used to the dramatic, the big news, the Hollywood view of things. But life is about small acts of kindness, being there for each other, helping, caring, seeing need and responding.

It’s not the despair, it’s the hope

There’s a comedy with John Cleese that has a great line in it. At a point in the story when the main character is almost ready to give up, he says, “it’s not the despair Laura, I can cope with the despair, it’s the hope.” By which he means, if he could just give up on trying to get to the headmasters’ conference in Norwich, the aim of his quest, then he could relax and let go. The despair he would then feel would be bearable because he would no longer be fighting. I understand that feeling very well.

Poster from the movie clockwise

Illness is often characterised as a fight, we talk about fighting against cancer, fighting a disease, we even fight a cold. We congratulate people who ‘overcome’ an illness. In cancer wards there is often a bell to ring triumphantly at the end of treatment. We celebrate and see a victory in overcoming illness. Now don’t misunderstand me, of course it is brilliant when people get well, and we should celebrate that. There are definitely illnesses that respond to being fought against. I also know that the mind plays a big part in all illnesses, so positive attitudes help in getting well, whatever is wrong with us. But there are also illnesses that do not respond to fighting. There are illnesses actually made worse by fighting.

Have you ever seen or heard of a Chinese finger puzzle? It is a tube that goes over two fingers, one on each of two hands. You then try to pull your two fingers apart. The harder you pull, the tighter the tube grips them. This is because the tube is designed to compress onto your fingers as it pulls apart. The only way to remove it, is to stop pulling, stop fighting, to actually push back the other way and remove it. Another illustration would be sinking sand, struggling makes you sink deeper. There are things made worse by fighting and struggle, and that is true for several illnesses too, as I know from experience.

Chinese finger puzzle
As you pull fingers apart the puzzle/trap grips more

You can see that an illness like that makes you look like a quitter. Because the only way you improve is by resting, stopping, what appears to be giving up. The only way to improve at all is by not fighting it. It’s counter intuitive and contrary to the way of the world. We are brought up, especially as men in my era to be fighters. We are told to try hard, push forward, try and overcome. When we have a cold, everyone’s attitude is to ‘suck it up’ and carry on. So why not be like that with all illnesses.

Here’s the thing, I am, and I was a fighter. I was first ill in 1990 and I carried on working, fighting, ignoring the illness. It’s both the advice I was given and the type of personality type I am. The effect on me was to make me worse and worse. I was physically strong, oh yes and often stupid. In the 1980’s I loaded a moving van with all our family’s possessions single handed, upright piano and all! There was no tail lift on the 7.5 tonne van, the only thing I could not load on my own was the washing machine. I had to get help. With the piano I put one end on the van and lifted the other up and slid it along. The washing machine was a dead weight and the van too high above me. I used to move car engines around without hoists. Yes, I was young and stupid. I am not showing off, I am saying I pushed myself beyond. When I had pleurisy in one lung, I drove, in agony, from South Wales to Scunthorpe on Christmas Eve so the family didn’t miss out on Christmas celebrations. Yes, I was in hospital that night, but I made the drive, in agony. Illness does not easily stop me. I am not a quitter.

Yet illness felled me. I could push no more. There are limits to human strength. I am not superhuman. I get so frustrated when people say I should pull my socks up or look at things differently or that illness can be overcome by positive attitude. These are such stupid comments. Not every illness can be overcome by attitude or strength. If positive thinking could make any difference, then I would never have been ill. If strength would help, I would not be ill. There are some things that just cannot be overcome by positive mental attitude or by fighting it. There comes a time when giving up really is the best and only option. Then at last you find rest and peace. Then at last healing can begin. I come back to my opening quote “It’s not the despair, I can cope with the despair, it’s the hope.”

Once you realise that all the fighting in the world is only making the illness worse, then coming to terms with it and learning to accept it really is the best way. Yes, you have to go through the despair of realising, ‘this is it.’ You may initially rail at the frustration of your limitations, but in the end, you can come to a place of peace and actually start to feel better. I have found that once I got through that period of angst and kicking against the limitations, I could make the most of my circumstances. Once I stopped wasting the little energy I had on anxiety and frustration, I could use it to enjoy the day.

If you have a similar illness that is not improved by fighting against, then learn from this. Stop fighting, accept your limitations and find the good things within your limitations. Obviously, this doesn’t apply to illnesses that you can fight against, but only the ones you can’t.

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