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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Towels have so many uses

I used to think towels were for drying. Or maybe, if it was big and multi-coloured then lying on and changing under on a beach. Now I have a very different view of towels. Two hand towels every day are used by my carers, one for top and one for tail, I didn’t even know I had a tail. Now here’s the clever bit, somehow the two towels double as modesty towels and drying towels. I know, amazing dexterity and swapping must go on. Actually I do have another towel, a large towel used for the lymphatic massage, no it doesn’t do the massage, it’s not that clever, it covers me up, but let’s not confuse things.

I have discovered that modesty is something carers are keen to maintain. It’s quite funny really when you think about it, they are washing your personal bits and making sure that you are covered. It’s like washing a car with a blanket over it, just uncovering the bit you are washing. I understand why, just seems funny. Humans are strange when you think about it. We have some bits of our body we hide and some bits we display. These vary over the years and in different societies. Anyway, that’s an aside. The point is we all get embarrassed if we are caught part dressed. We even allocate bits of clothing that can look identical to other bits as under garments. I digress again.

Over this last year and a half there have been a few funny moments, that come as a result of having my bed in our main room and my main care visit mid morning.

One time I was mid being washed and dressed, in the early days of one of my carers. She didn’t know all my family and friends. The door bell rang, so she left me with the two towel setup and answered the door. A lady we knew was at the door, she walked in past my carer saying she was just there for a quick visit. As she was so quick and confident, my carer assumed she had a right to come in. I heard her walking into the kitchen next to my room and I called through, “I’m not dressed, you’ll need to come back later.” OK so me in a towel is no different to any other Holywood Hulk rippling in muscles lying on a bed, but it seemed better for her to come back later. I thought she may prefer it and I certainly did.

Another time the district nurse was visiting and Mary was asking about a mark on my nether regions. Checking it wasn’t a pressure sore starting. In chatting, after showing her the mark Mary left my bottom exposed, the nurse covered it back up. Not surprising, there’s only so much excitement someone can take, oh yes and it was the correct thing to do from a modesty viewpoint. You see there is a right time and a wrong time to see a bottom.

Then there was the time, fairly recently in the hot weather. I was so hot I couldn’t face wearing joggers. I don’t really have other trousers, joggers are nice and soft. So I said to my carer I would just wear pants. She pointed out that it would be embarrassing for me if a visitor came. I said none were due, so it seemed fine.

Mary was out with friends at a meal and she phoned to say she was on route back. My carer needed to leave, so as Mary was due back any minute she left. Unfortunately, I had a collapse in those few minutes. Mary then came home, accompanied by two new friends, a husband and wife. Not knowing I was lying in my underwear she brought them in to meet me. I don’t think they were at all phased. But I felt embarrassed and being in a collapse couldn’t cover myself up. Mary was too distracted by the new people to notice. They only stayed a few minutes. Ah, the joys of limitations. Which also takes me back to an earlier point, what’s the difference between multi coloured underpants and swimming trunks? A button fly I suppose, but if it’s buttoned up, not a lot. Yes, it was.

I have been in Nursing homes where in the middle of a wash with two carers, the door opens and a third stands there asking a question. I have considered selling tickets, but maybe they’d ask for refunds. You can feel very exposed. I am sure the carers in those situations don’t think about it, obviously they should.

Hospital was the worst. I was in hospital last during the flu epidemic they had early 2018. It meant that they used the dining room as a side ward and my bed didn’t have curtains. They had to move a very unsatisfactory mobile screen around my bed if I needed a wee. It vaguely covered about a third of my bed, with a lot of effort they could borrow screens from another bed and totally screen my bed. But the ward was under staffed due to the extra patients, so it was hard to find staff to get a bottle let alone move screens. I don’t think modesty and dignity were words I thought of during that week. I won’t even talk about the time I used a bed pan.

Back to the towels. At least now, at home, I have a regular cover of modesty provided. Isn’t it great that something as simple as a towel can act as a modesty screen and a drying aid, and a beach bed and a massage cover. If you have read “Hitchhikers guide to the galaxy.” Then also a means of interstellar travel. Amazing things towels, they have so many uses.

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Flash, bang, wallop, what a picture!

I have always enjoyed photography and still do, even in a wheelchair.

My first camera, in 1972, was a Kodak Instamatic, it took cassette films of about 12 negatives and I had to badger my mum into processing it. Of course I could only afford black and white photos, or rather only convince mum to get me black and white. It was a few years later when cheaper colour, processing included with films came in.

The first photo I took was on Christmas morning at Church. Everyone leaning into the photo and many still excluded, this was a camera where you didn’t see what you were taking. The viewfinder was next to the lens and it wasn’t until you got the photos back you realised Aunty Fanny had no head and Uncle George wasn’t even in the photo. In these days of digital photos via phones, it’s difficult to comprehend such limitations.

I used to so love photography, as I grew up the cameras and equipment I had improved. I started processing my own photos, both black and white and later colour. When I met my wife, Mary I was able to invite her up to my darkroom, quite genuinely, without any puns about enlargers or seeing what develops. We both used to love going on photo expeditions then processing the photos.

Before we met, Mary had gone to the same camera shop as me, looked at the same two SLR cameras and decided against the one I bought. Not because she thought it a worse camera, but she thought it was a bit gimmicky. The traffic light exposure system didn’t appeal to her. It appealed to me. Red for too dark, orange for almost, green for go. Good old Pentax ME.

Later on, I did find working in photography took the joy out of it for me. Probably like the plumber whose house needs taps fixing, or the cleaner with a dirty house, or the builder with a broken door. When we were married, Mary had to give me a nudge to take photos of our children. Taking hundreds of photos of other children took the novelty away.

Oh how I wish digital had been around when I ran my photography business in the early 1980’s. I had to pay all of the up front costs of film and processing, hoping to sell enough packs of photos to make money when I did a photo shoot in a store. Portraits, weddings in fact everything I did would have been simpler and cheaper if I could have shown the results instantly to clients and just processed what they liked. Plus of course with digital you can take unlimited numbers of photos, instead of the 12-15 in medium format or 36 in 35mm per roll of film. Then with digital, you just print the ones that work, oh the joy. Mind you I now have tens of thousands of family photos on my PC when I used to just have hundreds of negatives. So there are limitations, digital makes us lazy. With film you shoot sparingly. Plus of course now everyone has a camera so I guess professionals find it harder to sell any photos. Most people just can’t ‘see’ the quality difference.

Fast forward to me now. Photography in a wheelchair. It’s a challenge, have you thought about angles and heights from a wheelchair. When I used to take photos I would, crouch, kneel even lie on the ground to get the angle I wanted. It did surprise me no one called the police or an ambulance when I lay on a path at night in the 1970’s taking time delay photos of passing cars. Back to now. At the very least I would want to be able to use a tripod and take higher angles. In a wheelchair, especially one without a riser, everything is one height. At least within a few inches. You can use a selfie stick to increase angles and heights a bit, but they are not ideal. The last one I used broke, fortunately just after removing my phone. I also find now that I just don’t have the physical and mental energy for photography, both taking and editing. If I take photos at all these days it tends to be on my phone. Mary takes most of our photos now and there are a lot unedited. You are probably thinking, ‘edited, What is he on about?’ If you just take photos and use them, that’s great. I have the curse of a professional past. It’s hard for me to look at a photo without seeing tonal, colour or cropping issues. That’s just the basics, if I really look, I can tweak a photo for ages.

Much as I enjoy the convenience of PC photo software, I miss a darkroom. There is something about the direct connection of chemicals, an enlarger and handling the negative and prints yourself that you lose with digital. Yes it’s messy and time consuming and takes skill and trial and error, but there’s nothing quite like it.

I find it very interesting that with the higher and higher definition photos and video we can now get, the latest style is low quality, scratched, black and white and out of focus. I guess we kick back and long for an earlier simpler time. Even current movies wash out the colour and deliberately shoot into the lights to get flare, they use hand held and out of focus shots. Still it’s helpful with clothing, I don’t need to buy new ones when my trousers get torn, just claim it’s a fashion statement. Torn joggers are the same as jeans aren’t they?

I wonder if we will reach a time when disability will be the desirable norm. People have become too perfect so they will want to be limited and broken. Just musing, not being serious. Although it’s not that far fetched, glasses for fashion rather than need are a real thing.

On a related topic. No it’s quite distant, but my mind jumps. I often hear people say they wish they could have a Blue Badge. I guess my answer would be, “wouldn’t it be great to have any plus without it’s associated negative.” A Blue Badge is a necessary thing for many people who struggle to walk far. Not all problems are visible, they may not be in a wheelchair, they could have heart or lung problems. I do object to able bodied family using the Blue Badge of their disabled family member. If you are thinking you fancy a Blue Badge, remember they come as a result of limitations, not as a prize.

Back to photography, (you knew I would get back to it J-B, didn’t you). The other weekend we were taking a group shot of Mary and I with a couple of our family who were visiting. Thinking the Quaker garden would be an ideal backdrop we headed there. But we forgot to take a tripod. Mary tried balancing the camera on a bench arm, a bin lid, a bench arm and brick, bin lid and brick then eventually the bin lid with a brick on its end. We all stood with an arbor behind us. An arbor that was home to a wasps nest as we discovered. Not the ideal location to stand still.

Self timers don’t go well with swatting wasps. Neither do smiles come naturally when you are avoiding being stung. At first I tried to operate the self timer, but discovered that the 10 seconds timer was insufficient for me to wheel back to the group and line up. So our son pressed the button. In the end we did get photos. Even some where we were all smiling.

Photography is great fun, I do still enjoy taking the odd photo and it is possible to take good ones, even in a wheelchair. I try to do things I used to get pleasure from, wherever I can. There are new limitations, but some can be overcome. In case I have waffled too much, very unlike me. Let me summarise.

1/ use a selfie stick to increase the angle you can take photos from in a wheelchair.

2/ take lots of photos, you can just use the best

3/ use a self timer, if necessary get someone else to start it

4/ have fun.

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Laugh and the world laughs with you

“I have just had my third breakfast, so I should be OK till lunch at 1:30pm.” I was talking to a supervisor from our care agency, she was there to ‘sign off’ my new carer on using my hoist. I explained to her that I have three breakfasts on Friday mornings, one extra to my usual Winnie the Pooh style, two breakfasts, because of the late care visit. What do you mean, you don’t even have one breakfast? That’s not my fault. I eat a little and often, it’s how I maintain my svelte figure. That is if svelte means slightly overweight, which I’m sure it does. Don’t look it up if you don’t already know it’s meaning.

I like Winnie the Pooh, he may be full of fluff, but I think I am too, at least I must be judging by how much is in my belly button every day. I like his comments, my favourite being when Rabbit built a really high, but short wall as a defence against heffalumps and Winnie the Pooh said “But they could just go around it.” And Rabbit says, “Around it, around it, no one gave me the specifications.” AA Milne was no doubt thinking of the Maginot Line, the WWII French defence against Germany that they went around. There are books on Winnie the Pooh wisdom, I wouldn’t go that far, I just find them fun with some bits of insight.

Winnie the Pooh does have a lot of good habits, he’s a relaxed and laid-back bear, doesn’t worry too much about how he looks. Sticks his head in honey pots. OK, so not all his habits are good. He also chats to his slightly depressed friend Eeyore, rather than ignoring him. He gets flattened by his bouncy friend Tigger too. Oops another problem. Insecurity doesn’t bother him, look at his friend Piglet. But best of all he has two breakfasts. First breakfast and second breakfast, brunchfast a meal between breakfast and lunch. I just improve on it with a third breakfast on Fridays.

For some reason the idea of this amused the care supervisor and she decided that being part of my care team would be fun. I do seem to amuse people who visit me, often I amuse them unintentionally, but it is fun being part of my care team we have a lot of laughs. My carers are chosen because they are good company as well as good carers. It’s a prerequisite when I chose a carer, they need a sense of humour, who else would put up with me. I’ve said before that humour is the way to cope with embarrassing situations and I would recommend that method to anyone struggling at receiving care.

I am going to get practical here. If you are about to receive care or newly receiving it there is a big obstacle most of us must overcome: Being naked in front of strangers, or even those we know, maybe especially those we know. Some will find this more of an issue than others. Some will find it more difficult with the same sex than the opposite sex. We are all different. But most of us find the idea of having someone undress us, non sexually, embarrassing. (I suppose some people might find getting undressed for sex embarrassing, but that’s not what I am looking at here.) Then the concept of someone washing us as an adult is so alien to us that we struggle with it anyway. If you manage to cope with that but need someone to wipe your bum or generally sort out your toileting needs, then things get really difficult. So how do we cope with all that?

My suggested coping method is laughter, fun, and humour, that is what I have found helps. If you laugh and joke it will break the ice and overcome your difficulties. Laughter and humour are very powerful tools, don’t dismiss them. They enable us to cope with situations that we think are beyond us. When we laugh or smile our body releases chemicals that help us relax. It also releases tension in you and any in the air. I am not saying laugh and all embarrassment goes, it still takes time to get used to coping with being cared for. But believe me, if you are laughing and joking with your carer you will not notice the embarrassment as much. I should also point out that the professional approach of carers really helps. I think if they were unsure and unprofessional it would be much more difficult. For me the thing that has taken longest to get used to is toileting. Laugh and the world laughs with you, even when they’re wiping your bum; did I quote that right? But even that is easier to cope with if you don’t treat it too seriously.

On a related topic, being cared for makes you feel like a child or a baby at times. Sometimes I will make a joke out of that. It’s a way of coping with that idea and not letting it niggle away at me.

I will end by encouraging you. If you are newly receiving care, it becomes easier over time, especially if you take it less seriously. If you are about to receive care, try out some or all of my suggestions. If you are a carer, paid or unpaid, thank you for all you do, we appreciate your care and support. If you are reading this out of interest, I hope it has been insightful.

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A room with a view

What a picture, what a photograph. No I shan’t finish the song. As I lie in bed about 90% of my time, shocking I know, then the view from my window is fairly well known to me. It would be better known if I spent more time looking out of it and less time looking at my iPad or PC and sometimes the TV. When I do look out I see a beautiful courtyard garden, created by Mary and filled with flowers.

Spring in our garden

I had a thought the other day. How is it that in just a few weeks, mud, water, heat and light transforms into a mass of greenery and flowers. Not just thin or low growing flowers, but thick stems and large leaves and flowers. Think about it, the change is really incredible. I watch that garden over the weeks and occasionally get to go into it in my wheelchair. Last I went into it, the part by our washing line was so full of plants that I think only a single sock would fit on the line. OK, maybe that’s an exaggeration, but the area had gone from an empty open space to encroached by raspberry bushes, lilies and sweet peas. All sides overhanging towards the middle. How is that possible in just a few weeks. What an amazing creation we live in, such variety, such complexity, such beauty and it all happens so quickly before our eyes.

The lilies that burst out next to our washing line

A few weeks back a very kind man on Facebook built me a bird table. I now get the added joy of watching birds pop by for brunch, or afternoon tea on the wing. It’s sort of a fly through, but without the intercom or payment window. I think I prefer a cheeseburger myself, but the birds seem to enjoy the mealworms. Mealworms, the name sounds like it should be tasty, but they don’t look it. The other day a pigeon tried to raid the bird table. I have nothing against pigeons, nothing for them either. Fortunately it couldn’t get into the table, try as it might. Whereas blackbirds, that I do like, can come and go at will. Mind you, one family of blackbirds have made a nest in my garage and I am not sure that I appreciate them pooping on the garage contents.

Bird table

What I enjoy most is stormy weather. When the rain hammers down and the wind blows, there is something dramatic about it. Yes, I know, you are out and about in it getting cold and wet, I’m sorry. Actually I used to really enjoy walking in the rain and wind and working in stormy weather. I think it’s because my day job was in an office. Getting out in nature, even raw nature was a treat. Even now I enjoy going out in my wheelchair on a stormy day. I really enjoyed looking out at the snow earlier this year and last. My wheelchair can’t travel in snow, but I can enjoy looking at it. Whereas rain and wind are not an obstacle.

The problem with wheelchairs on a stormy day, especially electric ones, is protection. I have tried so many waterproof covers. None are big enough to cover me and the chair. Not even ones designed for scooters. Because scooters are shaped differently to power wheelchairs. In the end the only way I could protect both was with a two layer approach. I have leggings that I sit into. Like child pushchair leggings (see my blog “Kids stuff.”) that protects me to waist height, sort of. Then I have what is described as a full wheelchair cover. This reaches to my lap. I have a Trabasac tray that latches onto my chair. I hook the top cover under that and that keeps my top half and most of the chair dry. But, the sides of the chair still get wet, especially my side pannier bags, they are waterproof fortunately. Plus water can collect in my rubber arm rests as they are cupped. Also the rear of my chair is only covered part way down. It’s a partial answer and looks more effective than it actually is. Normally when I get out of the chair there is a puddle of water by my feet, wet panniers and water in the armrests. I also find bits of me are wet.

Me covered as much as I can be

Back to my wonderful view. My bed is electric and profiling. That means it goes up and down and can shape, legs and head can raise and lower. So I can sit up and change my height. This gives me a range of views out of my window. At a higher setting I can see the path outside the patio door at the end of my bed. This door is too narrow and inaccessible for me to use in my wheelchair, but it is good for a view. When I was first in this bed I used to be dazzled by the sun. It comes straight in every morning. So a friend fitted a blind for me, now I ask my wife or carer to adjust it so that I can see the garden but don’t get dazzled. It’s a shame to shut out the sun, but helpful to keep your eyesight.

The good thing about our view is that it’s one way, most of the time. We have a private garden with a normally locked gate. So when my Carers get me washed and dressed I always used to get them to leave the curtains and blinds open. Until that one time the gate was left open for two days and we had three delivery men all of whom decided to try our back door, just as I was naked on the bed. It’s Murphy’s law that whenever you are on the toilet, in the bath or undressed that’s when a delivery arrives. Well at least you aren’t lying in front of the window with the delivery guy peering through it knocking.

The other view I have from my bed is a TV on a wall bracket. It doubles as a PC monitor. In case you are wondering why I would have a PC rather than a laptop, it’s because of weight. A laptop is heavy on my lap. The wireless keyboard and mouse I need for a PC aren’t, everything else is on the side. If you are bed bound and like computers, I recommend a PC with wireless keyboard and mouse. Unless you don’t find weight on your lap a problem. If you copy my idea, just use your LCD TV as a monitor, most have more than one HDMI input. You just swap between them to use your PC. Oh, I’m getting like a computer helpline here.

I am going to have a quick aside here, I used to work on a computer helpline part time. One person phoned me up and I gave them the advice you will always get with computers “just shut your PC down, wait ten seconds and start it again.” They said they had shut it down, waited ten seconds and started it, then instantly said everything was back on. The desktop was showing and everything had restarted. This was before SSD hard drives that can be almost instant to restart. I was puzzled for a moment then I realised what they had done and I said “did you switch off the button on your screen, then turn it back on?” They had, so we started again, this time I was more detailed in my instructions.

I find that using my iPad quite a lot, to watch films or write this blog, my vision gets closed in. So it’s helpful to look out through the patio door to the outside. My room with a view really comes into its own. I can enjoy what I see all year round.

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The long goodbye

(No it’s not about death, nor is it a fictional thriller)

Carers are more than friends, but not quite family, they are professional and yet close, carers are in a group of their own. Because of this it’s very difficult when it comes time to change carers. This happens for several reasons. They may leave the agency you use; they may move, you could move or sometimes events conspire to make it impossible to continue with a carer.

Last birthday, with 3 of my carers (blurred for anonymity)

Over the years we’ve had that happen more than once. One carer became just focused on me and lost sight of the fact that she was there to support us as a couple (if a carer doesn’t support Mary they are missing a vital part of the job), yet another was only employed temporarily to cover for a carer who was long term ill, some are holiday cover, while others have moved jobs or become ill, or leave to have children, whatever the reason we have to say goodbye to a carer it is never easy. As I come up to my birthday, only one of my current carers was with me last year. Many times, we have kept in touch, although that isn’t always possible.

There is a kind of bereavement losing a carer. You become so close, even to ones that you know for a short time. I guess it’s the level of intimacy both physically and mentally that is involved in care. I blogged about this before, “Care, a strange relationship.” When you no longer see a carer regularly it’s like losing someone very close. An aside here, I keep saying ‘a carer’ which makes them seem very impersonal. That’s because I want to keep confidentiality. I would rather use their names, but that would be inappropriate. So just replace ‘a carer’ with a name of a really close friend or family member when you read that.

I really hate it when we must change carers. Being a person who dislikes change doesn’t help. But the fact I am a people person makes it very difficult. I invest time and energy in getting to know my carers. Energy is a valuable commodity for me. More valuable than money, I have very little of it. So little that it’s one of the reasons I have carers in the first place. Not only am I physically limited, unable to stand or walk. But I also have very little energy reserves. So, I must budget it for the day. If I used my energy getting washed and dressed, I wouldn’t have energy to enjoy the day. By enjoy, I don’t mean much more than be bright enough to laugh, joke and chat, watch TV, eat my food and write this blog. All these things take a colossal amount of energy.

If you have ever had a serious illness, very serious, not a cold, you will know that the smallest thing can be exhausting. My carers don’t just help me because of my physical limitations, although obviously I need that, they help me reserve my energy. So, when I then chose to expend some of that energy on getting to know them, that is an expensive choice on my part. I have allocated a part of my daily budget of energy on them. That’s a mark of how I value them, I make that choice. I enjoy their company.

When I lose a carer, I feel like I lose a big part of what makes my day and a part of what I look forward to, it’s like I lose part of me. Each carer I have is unique and has qualities that make them special. I wrote a blog all about my wife “The most amazing carer of all.” Because I recognise that Mary is my main and best carer. But my other carers are also really incredible, they have got Mary and I through difficult times. They have put themselves out, above and beyond their jobs. It is their cheeriness, strength, aid, comfort, help, encouragement, smiles, warmth, friendliness and wonderful nature’s that get us through. I know most of my carers past and present read this, that’s not why I have been positive, it’s because it’s true. Many of my carers have been kind enough to say they enjoy being with Mary and me. The reverse is true in spades. They really are the most incredible people and I value them so much.

If you are reading this and looking at going into care as a profession, know the difference you will make. You won’t always get to look after people who have mental capacity. Not everyone you look after will show appreciation. Some people can be downright rude. But often that comes from a place of pain. You will still be transforming their lives. They may not be able or choose to say it, but you will be a great blessing. Just as our carers are to us.

Every time I lose a carer it’s like a long goodbye. Painful, slow, drawn out. I want to avoid it, but I can’t. I just have to look back at the good memories of wonderful times spent with them and if we keep in touch, look forward to meeting up in the future.

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A walk in the dark

Have you ever been wheeled along with your eyes closed? Perhaps on a hospital trip, or have a childhood memory of this happening? Maybe you’re a wheelchair user and you’ve been pushed along with your eyes closed, so you will fully understand what I am about to say. For those who haven’t, prepare to exercise your imagination muscles.

I have occasional ‘collapses’ which I’ve written a lot about elsewhere, so I will just say, I stay conscious but lose the ability to move or open my eyes. If I get one while Mary or a carer is operating my wheelchair it is a very strange experience. Being powered along or even stationary when somewhere new in the dark is odd. Even familiar places become voids of darkness that my other senses reach out into, trying to explore.

As a writer I have a very good imagination. I can build up pictures in my mind with full colour, smell and even feel. But I find that what is lacking is scale, a sense of how big somewhere is. Roads seem shorter, rooms smaller, everything is compressed. In the words of estate agents, bijou. This is what I find most when being wheeled with my eyes closed. My mind fills in the colour and shapes around me, based on what I hear, smell and Mary’s description. But everything is much smaller than reality. How do I know? Because I come around from collapses when I am on route or arrived somewhere, I am always surprised by the real size of the place.

Today we headed to the Cleve Spa, there’s a surprise. Just as we were heading up the High Street, I had a ‘collapse’, they have become less often on my new medication, so this took me by surprise. The first thing I noticed as it’s been a few weeks since I have been travelling up the High Street in a collapse, was the noise and hubbub. Your senses become much more attuned to sound, smell and vibration when you can’t see. The cars seemed noisier and smellier, the people louder, no not smellier, the path bumper. I found myself trying to work out where we were. I failed, because just as I thought we were passing Boots, Mary said “OK I am just turning you to face the traffic lights.” Not far out I suppose, but a miss non the less. One of my carers was crossing the other way with her daughter. So, she got a welcome from Mary and a hello at I hope the right point from me. Although judging by how far away she sounded as she said hello back, I guess we met part way across the road.

The traffic light crossing at Wellington (Photo from Google Earth)

The next thing to negotiate and to confuse me, not a tricky job, was Greggs. No, I wasn’t confused by the cakes. We often pick up a snack there for tea. Apparently, there were several people, a dog and a mobility buggy outside the shop, but Mary got us inside so quickly I was amazed at how she achieved it. I am sure she either beamed us through or jumped over them. Maybe they just melted away because I didn’t hear any bumps or bruises, nor did I feel us jump. I know Greggs from when I am alert, so I was picturing the tight space as Mary negotiated the route inside. Mary told me there were a few people ahead of us. Not wanting to leave me outside unattended, after all you hear of baby snatchers, there are probably the equivalent who would take me away, I am very cute and cuddly. Seriously she needed to keep an eye on me, so I didn’t get up to mischief. We both queued, Mary is a wheelchair genius at manoeuvring. Then after we were served, snack in hand, Mary’s not mine, we left and continued en route to the Spa.

Greggs on Wellington High St (Photo Google Earth)

I concentrated on where we were next. Normally I can tell by the smell, which shop we are near, meat as we pass Tim Potters, the butcher etc. Once Mary said to me, as a way to pass the time as we walked while I was in a ‘collapse’, “what can you smell?” Expecting me to smell the flowers we were passing. I said, “creosote, dog mess, and petrol fumes.” Not the answer she expected. But this day my senses must have been on mute because the next I knew we were on the wheelchair tipping part of our route near the hairdressers Black Sheep. It’s very narrow and the camber is awful for wheelchairs. I became so aware that distance has no meaning in the blackness. There is also a kind of comfort that comes from being in the dark. You remember as a child when you shut your eyes to make bad thing go away? You feel safe even when you are in danger. That’s what it’s like for me at these times. When we are crossing a road or on uneven cambers, I don’t feel fear. Which brings me to the road we had to cross next.

Narrow path & uneven camber, not obvious in photo (Photo Google Earth)

To get to the Spa on foot in a wheelchair you must cross the road by Courtfields School and The Young Peoples Centre, right by the BP garage. Somerset roads dept have fiendishly put a slightly higher curb on the dropped pavement either side of the road here and a left a deep furrow in the middle of the road. This is a fast bit of the road and we really need to cross it fast. Mary can only see left after she starts to cross, due to parked cars. Add to this the fact cars are often leaving the garage, the school and the youth centre, oh yes and the Spa and any gaps in traffic on the main road get used fast. We need a big gap to cross and hope it is clear left. But we must be slow to enter the road because of the curb, then in the middle because of the furrow and at the other curb. With my eyes closed I know all this and yet I feel safe. It’s much scarier with your eyes open.  Maybe I should close my eyes every time. Maybe I should have closed my eyes every time I got into scary situations when I used to drive. Don’t worry I am joking.

The ‘collapses’ generally last 10-15 minutes and with this one I came around as we climbed the steep hill to the Spa. Another interesting walk in the dark. As usual it took me a while to get my bearings mentally. I must replace the mental image I have created with the reality I then see. Add to that the slightly strange effect the ‘collapses’ have on my brain anyway and it takes a while to fully focus.

I don’t begin to comprehend what it must be like to be blind. After all, I am only losing vision for minutes and even then, I am being wheeled around. So, I don’t have the added difficulty of trying to feel my way around. The only insight I gain into blindness is the increase in other senses and the disconnect between the mental image I create and reality. What it does do for me is to help me realise that when an able bodied person tries to gain an insight into disability by using a wheelchair or hoist, they can only get the merest glimpse, just as I do in these times of being unable to see. It’s a helpful glimpse and I strongly encourage it, but it must be recognised as only a glimpse.

I hope you’ve had a chance to exercise your imagination or been reminded of previous times. Darkness is something that can be comforting as well as holding an element of fear. It all depends on perspective and the situation.

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Mistakes, I’ve made a few

“I was wrong.” As Mary said this, I tried not to look surprised, but I was. It’s not something she says very often, annoyingly because she isn’t often wrong.

I, on the other hand make mistakes as a hobby. Mistake is a word that definitely features in my dictionary, it comes right after spelling and just before grammar.

When we make mistakes, it’s tempting to hide the fact. I remember as a child we had a large glass coffee table. It was great for playing card games on, you dropped something and as you picked it up you could glance under the table at your brothers and sisters’ cards. Oh no, now they’ll know I cheated. What you couldn’t drop on it, we discovered, was anything heavy.

The sound of breaking glass is not a sound I enjoy. It brought back memories of when I was even younger, and I slammed a glass door in my sisters’ face when she was chasing after me. Why do children run with their arms outstretched? The scars on her arms are still there as a reminder of that unfortunate episode. The breaking coffee table was a scar waiting to happen. All of us children froze, this was the era when parents punished you for being naughty. Unlike today when you might get put in the naughty corner. We were not looking forward to dad coming home and seeing his expensive coffee table in pieces. At least mum was due home first. I will leave to your imagination his response. If you were born in the 1960’s you will understand.

School was always a place where I exercised my mistake muscle most. Primary school in particular was a training ground for error making. We had ink pots when I went to school. No, not quills, plastic pens to dip in them.

Not like this
Like this

I went to school in Buckinghamshire, they didn’t believe in new-fangled things like biros, Mary’s school had those, her birth county was far ahead of mine. The fun thing about ink pots is that they have actual ink in them. One day a friend showed me an amazing trick. He turned the ink pot over in one swift movement without spilling any ink. I was so impressed, I decided to copy him. No, I have no idea what was happening in the class, I’m sure there was a lesson going on, the teacher was probably talking, you can’t expect me to remember everything when there are ink pots waiting to be turned over. I swiftly turned the pot over, but my hand couldn’t turn all the way 360 degrees, so the ink poured onto my desk. Why the teacher chose that moment to stop talking and look at me I don’t know. I do know that we still had the cane in our school, and I was very familiar with it. My bottom said hello to it again that day. Maybe that’s why I have such a soft bottom today, it’s like tenderising meat, it got pounded so much as a child. I later found out what I had done wrong with the ink pot trick. In order to turn the ink pot 360 degrees, you must start with your hand upside down, strained slightly ready to spring (see photo).

Correct starting point for ink pot trick
This is how I started the trick

Never let it be said I don’t learn fast. There was no way I wanted to be caned again, I was feeling sorry for the headmasters’ arm. So, I was very good for a long time after that. It was not my fault what happened next, I know you’ve heard that before, but hear me out, I was innocent. We had a swimming pool at our school and in summer term it was open immediately after school for pupils to use. It was only small and positioned six feet outside the staff room so the staff could keep an ear out for problems with us kids, this was a 1970’s safety feature instead of lifeguards and for extra safety they put a hedge all around the pool, including between the staff room and pool. This was the days before health and safety went mad, you know the days when the odd child dying or getting injured was not seen as such a problem. Those halcyon days often mentioned with rose tinted glasses on social media when we used to do dangerous things and get hurt or killed. The days many want to return to, but those who were injured are happy have passed. I know we had fun; I’m just adding some balance.

This is to give an idea of the pool
The actual pool had a hedge around it rather than a fence.

Back to the swimming pool. One afternoon my mates and I were playing in the pool and I had a great idea for a game. Lifeguard and drowning children. What child doesn’t like drama. Every child in the pool was up for the game. I arranged two groups. One smaller group of lifeguards and everyone else to be in the pool screaming out that they were drowning. It was a warm summer afternoon; the staff room windows were open just 6 feet away over the hedge. You probably know where this is going.

As my mates started screaming “help, I’m drowning!” and the pretend lifeguards were shouting “you save that one, I’ll get the other.” Teachers started to run out of the staff room. I don’t think I had seen them move so fast. Fat teachers, thin teachers, large teachers, small teachers, the gym teacher, and the headmaster, they all came running red faced and panicked. As they rounded the hedge, they desperately looked around for the children to rescue. Instead they saw lots of surprised and happy children.

Isn’t it amazing how you can go from being really popular and looked up to by your mates, to the scapegoat? When the teachers had finally caught their breath and calmed down, they looked to apportion blame. Isn’t that always the way? Every finger of every child pointed at me. My bottom got another hammering. Oh well, more tenderising.

Do you find when you make mistakes you want to hide? Pretend it wasn’t you, or just gloss over it. In this day and age, we tend to act as if there are no such things as mistakes. Everything is just relative, shades of grey. There seems to be no right or wrong anymore. Yet we all know that’s not true. Perhaps all that’s happened is we’ve lost the courage of our convictions. It’s no surprise when we end up being led by liars and cheats if we refuse to draw a line in the sand and say, ‘lies are not acceptable’. If truth becomes a flexible commodity to be strained and tested by social media is it any wonder, we don’t recognise truth anymore. The idea of absolute truth has been refuted and abused. So, what are we left with?

I made and still make mistakes. The reason I know that is that I recognise there is such a thing as right and wrong. There is good and evil in this world. People do both. There is a God who loves us and unlike the headmaster, who caned me when I made mistakes, God loves me in spite of my mistakes. You see when I drop ink all over the desk of my life, God doesn’t shout at me or cane me. When I smash the glass table of my life, God isn’t cross with me. When I do stupid thoughtless things, that seem like fun to me, but are problems to others God doesn’t call me to his office in the sky and look sternly at me, preparing a metaphorical cane. No, God accepts me, mistakes, failings, stupidity and all. Then rather than leave me in a mess, he helps me change.

I can look back at laugh at my mistakes because I have a God who loves me. I can look at the grey uncertain world around me and know that whatever lies abound, there is absolute truth. Jesus said “I am the way, the truth and the life. No one can come to the Father (God) except through me.” People often say, ‘how can you be so upbeat and joyful in your situation?’ This is how. It’s because despite all my mistakes and faults, God loves me.

I will end where I began, Mary doesn’t make many mistakes. She made one big right choice when she chose to follow Jesus many years ago. She made another great choice when she took me to Church in 1981 and I began to follow Jesus. Don’t dismiss my faith as being OK for me but no good for you. No matter what mess your life is in, God loves you. No matter how much trouble you are in, God loves you. He is there to be found. There is a great free course that gives an opportunity to explore about Christianity with no strings. It runs all over the world, it’s called Alpha. Check out a local one at https://alpha.org

If you want to know more, check out a local Alpha course https://alpha.org

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Home is where the heart is (Update)

We all know the expression, “Home is where the heart is.” It expresses the idea that home is not a building but a place we connect to emotionally. Of course to connect to a place emotionally it has to offer something that touches us. That could be a memory about where we grew up, where our children were born, our first home, where our parents live or something that touches our feelings about our past. But emotions on their own don’t make up the complete human experience. We need physical things, comfort, warmth, convenience, accessibility, and other our practical needs meeting. A home has to fulfil those practical as well as emotional needs. Sorry to state the obvious.

For most people finding a place to live is a big issue, a major life decision and a mammoth task. When you are disabled, especially a wheelchair user, the issues are compounded. A suitable property has to have wider doors and corridors, more space in the rooms. It needs level access and a wet room. Ideally a ceiling hoist or a suitable room to fit one, from the bedroom to the wet room. The kitchen needs to be accessible if you are able to use it at all (I can’t, but other disabled people can). There often needs to be a call system to summon help. Parking, if any needs to be wider and nearby. These are just the more obvious aspects.

Think about your current home, look around you. How wide are your doors? Do you have a downstairs toilet, let alone a bathroom. Does your front door have any ridge or step? Even a 1” step is a bump for a wheelchair. How tight are the angles into your house? Think about your neighbours, friends, families houses. How many have level access, by that I mean no bumps at all. How many have wide doors and corridors? How many have downstairs toilets or showers?

Wheelchair by my bed while I am lowered back into bed by ceiling hoist.

You may think that I am asking irrelevant questions that don’t apply to you. If you are able bodied and fit. Why should you worry? Let me explain. First there is something that happens to us all, we grow old and become less able bodied. Most of us have relatives like that, don’t we want them to be able to visit? Even if you don’t want your relatives to visit, one day that will be you. Second there is accident and illness. All too common. I was 100% fit and well in my early 30’s when illness first struck me down. I have friends who have had serious accidents. Yes, it can happen to you, or a family member or a friend. Don’t you want them to visit. What if it happens to you, will you be able to stay where you are? What houses are there suitable?

Accessible housing is a real issue for everyone, not just those of us in wheelchairs. It will increasingly become an issue with an ageing population. We need to be aware and think about these things.

There is a big problem in this country with availability of accessible properties. There are far more disabled and elderly people than disabled accessible homes being built, see the report from Habinteg:

We need to lobby for improvements in this situation. The Habinteg website has ways to do this

It also tells you a lot more about the problem than I have.

Update the government have responded to the report:

http://www.google.com/url?q=https://mailchi.mp/habinteg.org.uk/new-habinteg-research-released-whats-the-forecast-for-accessible-homes-1247221?e%3D7bbdcfa79a&source=gmail&ust=1562313550925000&usg=AFQjCNHynGHbnenXoBuGl85PvcGTeW7kaA

I have written a blog (Bedroom, dining room, lounge, toilet) about our own situation.

Memory

(Not about health)

When you spend a lot of time in bed, you get a lot of thinking time. My brain is not as sharp as it was, but I do find myself musing on many things. The other day, after I was promoted by a song, to blog about Mary and I meeting and marrying, I started to muse on memory. These are my thoughts.

You hear a song and it brings back a memory of your first love, or in my case only love. Smell some pickle and you are back at school trying to force down a serving of chewy processed ham, dry peas and watery tasteless mash all served with a dollop of strong-smelling pickle. Touch a cold piece of marble and you are a tearful child again, on a cold wet day standing by a grave. Sad faces looking down at you. See a crackling fire and you are gathered around a Christmas hearth warm and cosy, excitedly waiting to hang up your stocking. Our senses connect to our memories in powerful ways, both negative and positive.

Memories, both long and short term are used by magicians, marketing people and politicians to influence and manipulate us. I watched an episode of Britain’s Got Talent where Simon Cowell apparently had his mind read by a police dog. I will make no comments about how hard that would be. But in this instance the way it was done, look away if you believe in magic, was by trickery. All the performance before the ‘mind reading’ had emphasised and reinforced the idea that the dog was ‘heroic’. The policeman had said it, and a video had demonstrated it. So that when Simon was given a ‘free’ choice of word to describe the dog, there was only one possibility, ‘heroic’. Which of course had been planned and pre engraved on the dog collar. Similar tricks are done by magicians all the time. Words are imprinted into the subject’s memory by suggestions visually and audibly. A typical trick is to lead a person into a room, with images and physical representations of a particular word all around, the magician also keeps repeating the word and the result is to imprint the word into the memory of the subject that way. Then the magician just says, “think of a word.” And the subject will think of the imprinted word. It seems like magic when the magician produces a ready produced document with that word on it.

Marketing people do a similar thing with adverts. Not imprinted words, but ideas and feelings attached to our memories are connected to a product. We think we are not influenced by adverts. Yeah right! Adverts are just much cleverer than ever before. They don’t say “buy this product, it’s great.” What they do is build up a feeling, a desire or aspiration within you. Then show you how the product meets what has become a felt need within you. Take a car advert, any car. You would think they would advertise its features, safety, economy etc. But those things tend to run in text along the bottom. The adverts are all about feelings, impressed on you by visual and audio influences. You are sold an experience an idea a feeling. They tap into your positive memories, really what they do is imprint thoughts about this car alongside those memories, connecting them. If you were in this car you would feel free, excited, comfortable, respected etc. You would be having fun, enjoying life, carefree and so on. Your experience of life would be changed. In the advert the roads are empty, the children if any in the car are happy and occupied. The weather is either sunny or at least dramatic and exciting, never dreary and boring. The advert seems to say, ‘this car would change your life.’ ‘You would be a better person.’ ‘People would respect you more.’ Not this car would get you from A to B economically, comfortable and safely. Sight and sound are used to draw on your positive memories. It builds up a feeling of desire, warmth, aspiration, content, fulfilment, happiness etc, that you then link to that car. It’s all trickery. This is used for all products and is even evident in shops and online.

Next time you are shopping look around you and see the imagery, sounds and sometimes scents that are there to trigger your positive memories. What is it connecting to in your memory? What feeling is it trying to engender within you? Comfort, warmth, hunger, desire… Are the marketeers trying to take you back to your youth? Or are they reminding you how hungry you feel. One thing is certain they are playing with your feelings and emotions at a level you are probably unaware of. Interesting isn’t it, when you look for it.

Politicians now use the same techniques. That’s the real way we can end up with people in power who most of us scratch our heads about and say: ‘how did they get elected?”. We are much more easily manipulated and managed than we realise. Our memories both positive and negative can be touched on by clever rhetoric and images. People and parties repeatedly bombard social media with those images and the regular news with sound bites. So that the consensus becomes steered towards whatever they want. It’s not hard to turn a lot of people against a whole people group, idea or religion. Or towards an idea. The sad thing is that many people can end up believing that they always had those views and fiercely fight to defend them. If we are not careful, we can get swept along on a wave of emotions that taps into deep seated memories and feelings from our past. Facts, reality and common sense can all go out of the window in the face of such an onslaught.

I make it all sound a bit hopeless, like we are manipulated and can do nothing. But that is not the case. The first step to undoing manipulation is recognising it. We have intelligence and we can use that to counter the influence. We are not dumb animals to be led by the nose. Yes, we do get a spark of feeling from a triggered memory. But if we realise that it is being deliberately triggered then we do not have to respond. Look for the clues. Let me give you a practical example. As I watched Britain’s Got Talent, I knew the word ‘heroic’ was being imprinted. So that when Simon Cowell was asked for a word, I could see the word ‘heroic’ was going to be asked for somehow. I would have chosen another word. OK so that’s an example that would spoil a trick. But it’s a principle and works in every situation.

Ask yourself why is it that some political parties put out the images they do? What is the natural response to the images they propagate? What is the purpose of their sound bites and headlines? Are they just tapping into your emotional response? Do you want them to lead you by the nose that way? Choose your own response. Better still look at what they are talking about and search deeper. Don’t look at their images and news stories and respond in the obvious way, find the deeper truth. I find that more digging will unearth a greater truth beneath.

Let me give you a practical example a few years back an image was circulated on social media of young Arabic men getting off a boat. The headline suggested these were the “so called refugees fleeing persecution.” Going on to suggest they were young men seeking jobs under the guise off fleeing persecution and asking where are the women and children we are supposed to be helping? In fact, the photo was of young men on a ferry to Italy on their way to work, legitimate work. They were not claiming to be refugees or asylum seekers at all. But the photo had a huge impact turning people against asylum seekers. Many people believed the image at face value without checking it out. The storm of vitriolic comments on social media was shocking. Such manipulation of images plays on our minds to negatively influence and turn us against those in genuine need. In the case I have given it worked the way the people planned. They manipulated many people by visual trickery, drawing on deep seated emotions and feelings. This technique is used a lot by politicians and those who want to influence us. Be wary, if you see a picture, don’t just believe that the headline is true to the picture or even that the headline itself is true. Do wider research on many different sites.

Headlines are not truth. Let me repeat that for emphasis ‘Headlines are not truth.’ They are snippets of truth at very best and very often distortions of truth. You can distort any truth by how you phrase a headline. The image you put with a headline can totally transform our emotional reaction to it. Look deeper, don’t allow sound bites, images and headlines influence your emotions and thus your decisions. Images are also not truth. Think of images of yourself, how a photo taken out of context with an inappropriate headline could paint a complete lie. Images are not truth. At this time of crisis and division in our country in particular we all need to be very careful not to react quickly to gut instincts and emotional calls. Don’t be tricked by sound bites, headlines and images, whether on social media or the regular media. Our minds are being played with, we need to be aware and take back control of our own thinking.

What about with adverts and shops. Ask yourself how am I being manipulated? What am I meant to feel about this product? Then ask real questions about it. If it’s a car, what about economy, safety and comfort. If it’s food what about nutrition, flavour, environmental issues. Don’t be led by the nose. Advertisers are happy to lead us the way they want. Break free and go the way you want.

Memory is powerful and the effect it has emotionally on us seems to rule our actions. But our intellect can over-rule if we chose to let it. All I am saying is that we have a choice, our emotional memories and feelings don’t have to rule our actions.

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Consequences

1995 Board game

Didn’t there used to be a game called consequences? Not sure I ever played it, I’m not really into board games. Too much time playing monopoly on Saturday mornings as a child, or rather losing monopoly. Mary was saying to me this morning how we sometimes forget there are consequences, we can’t just have fun and games, she was talking about my health. After three afternoons of going out in my wheelchair; today I have been awoken by a severe headache. When this happens, all too often, the headache literally drags me out of a deep sleep as it did this morning. The pain and nausea awaken me. This morning was most likely a migraine, but as I missed the aura, being asleep at the time, it’s hard to be sure. I do know that it seems to be responding, slowly, to the migraine medication, Zolmitripan. At least it is after the second one, which I had to wait two hours to take, then another hour to take effect.

I was woken at 4am, it’s now 8.05am and the pain is lifting, leaving me feeling, rung out and yuk. The plans for the whole day need to change because of this. I just need quiet and not too much light. The tablets are good, but not 100% effective. What they do is stop the agonising, head splitting headache in its tracks and leave a numb rung out feeling, that normally follows the day after a migraine. You feel like you have become very fragile, like a china doll.

Today family are visiting, and I’d hoped to join them at Weatherspoon’s for lunch. But instead we’ve had to hastily rearrange my care so that Mary is free to go with them on her own. That takes its toll on Mary. Changed plans are never easy and in this case mean moving things around in the house so that I can have a quiet space in my bedroom which is also our lounge (See my blog “Bedroom, dining room, lounge, toilet.”), plus organising care and changing other plans for the day. All before Mary’s breakfast. I feel useless, lying here with a cool bag on my head looking pathetic. Needing all the usual things done for me on top of this extra.

We should have learnt by now about consequences. But I find that my memory for suffering is very short and my memory for joy very long. So that when things go wrong and I end up in difficulty, feeling nauseous and in agony, I forget it soon after. That’s why I wrote this on the day it happened. I need to be feeling it to remember it. I’m not sure if it’s a protective thing, or just a very good strategy, but either way it works well. I am not a miserable person. I don’t focus on the bad days. Even during a bad day, I don’t have to be free of pain for many minutes before I move on. My tendency is always to be optimistic and positive. Anyone who knows me well will agree with that. That’s the real reason I never learn about consequences. I have a very short memory. I will also use distraction and adrenaline to override pain and difficulty. If anyone visits, I refuse to look sad and gloomy. This is a very common thing to do for those who are chronically sick. They will mask their real feeling behind a smile and laugh. It’s amazing how effective that is at making people say, “You look so well.”

We tend to judge the degree of illness someone is suffering on how miserable they look or on how white they are. Misery is easy to hide, and I would suggest desirable to do so. Who wants to visit a misery? Don’t misunderstand me here, there are times when the pain becomes so bad you can’t ‘put on a brave face,’ at those times I avoid seeing people. But I find those times come in waves for me. Pain, in my case is more often wearingly long term (chronic). But I realise there will be those who are suffering from severe, constant pain, don’t assume I am talking about them. I can only talk about myself and people in my situation. Whiteness commonly comes with iron deficiency anaemia and bouts of nausea. In fact, people can often look very ill when they have a minor cold and very well when they are dying. I have seen two friends on the day of their death, both looked better than ever. I never guessed it was the last day I would see them. If you have ever seen someone the day after a major heart attack, they can look bright and well. Yet they have not only nearly died, but still have major heart damage. Add into the picture all the major illnesses that show few external signs till the very end and its all very confusing. I always find it odd that a lot of cancers are invisible until treatment starts. The treatment makes people very ill, until it hopefully cures them. My point being that something as life threatening as cancer can sometimes be unseen until treatment starts. We cannot make a diagnosis of how well someone is by how they look. Certainly, a smiling red face tells us nothing. Again, I understand there are those who are severely ill and look it. I am talking of the many who are severely ill and don’t look it. (See my blog “You look so well.”)

I made the best of today, managed to see our visitors a couple of times during the day. Mary brought them in after each of their trips out. It was lovely to be included, but I needed the long breaks in between to recover.

I am writing this last section the next day. Migraine is gone and I am feeling that strange post migraine euphoria, that only migraine sufferers will understand fully. It’s like a weight has been lifted and you are left feeling a little lighter than usual as if gravity has reduced. I tend to get more ringing in my ears (tinnitus) but that may not be common. When I was still able to walk, I used to feel like going for a walk or even a run on a morning after a migraine. The freedom and joy of it having gone makes you want to rejoice. Now I run in my head, although I am always curious how my smart watch seems to find I have done some steps every day, in my bed! I don’t want to disappoint those of you with smart watches who assume every step on your watch you really took. Perhaps my watch counts the steps I take in my imagination? Don’t worry, I know that its based on arm movement so the few steps it counts are my arm moving.

There are consequences to everything we do. That applies whether you are ill or not, it’s just more obvious physically when you are ill. Activity takes a toll easily when your body is weaker. I so enjoy getting out of the house and this won’t stop me. I just need to pace it and allow recovery days. Today is a quiet day before I try out the swimming pool tomorrow (see my blog “Sink or swim.”) Let’s see if I can remember the lesson learnt.

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I’m singing in the rain

“Oh no, I’ve given you another excuse to sing.” This said by one of my carers, after she inadvertently mentioned a song title in something she said.

Can I help it if I love singing? These days I only sing a few words, a line at most, but it brings back the memories of singing. I don’t claim to be the greatest singer or actor. But I did love singing and acting in Nailsea Musicals (see Biography of Mike & Mary). ‘The sun has got its hat on’, has never sounded the same as when I sang it. Just as well really.

Me singing “The sun has got his hat on.”

The production of ‘Lest we forget’ demonstrated why I shouldn’t become a dancer. Amazing bottom wiggles aside, which, let’s face it, did look good in my sailor whites, every other move lacked style.

Me 2nd from right in sailor whites, wiggling my bum.

My rendition of a verse in ‘Bless em all.’ Had to be seen to be fully appreciated. Maybe the fact that I hadn’t understood waist measuring had moved between 1940 and 2000 didn’t help. I measured my hips, 36”. In 1940 waists were measured around your tummy, mine was 40”. When my 1940’s uniform arrived with a 36” waist, it wouldn’t fit over my 40” inch belly. Even after Mary moved the button and I breathed in; tears were in my eyes the whole of the song. Perhaps I looked more emotional, maybe I had a higher register, or was I just in great discomfort.

I relive my glory days as a singer every time I am hoisted now with a line from ‘Up, up and away.’ Or the beat box sound of Thunderbirds. I shan’t tell you what I sing when I use the bedpan in the morning. I’m sure your imagination can fill in the sounds and all the other senses.

People who meet me tend to say what a ‘happy chap’ I am. That’s before I start singing. Maybe I could change that if I sang a few choruses to them. It could be that the silly grin I often have plastered on my face, or my daft sense of humour gives people this idea. But I am more than happy. I have talked about this before in my blog “How can it be OK?” Happiness is about what happens to you. I do have lots of good things to be grateful for. But I could also focus on the negative limitations. I don’t do that, I find an inner joy, because joy is not reliant on events and situations. Joy comes from within. My joy and my peace comes from knowing God. 38 years ago, I had my eyes opened and my life felt like it started again. That is the real reason I am such a ‘happy chap.’

My carers often say that spending time with me cheers them up, because I am very positive and upbeat. What they are experiencing is the joy and peace I know from God. I can be as grouchy and as much of a pain as anyone else. I am by no means perfect. But despite my imperfection, even though I fail, God never does. He shines out even on my darkest days.

I want to just say a quick aside about religion. I am not religious. I don’t follow a set of rules. There is not a list of things I must achieve for God to love me. If you think there is, then think again. That is a legalistic way of looking at God. It makes God into a big bad distant figure in the sky. A sort of white bearded disciplinarian, waiting to punish us for getting it all wrong. That is not the God I know. That is not the God I met 38 years ago through Jesus. God is a loving, forgiving father, a father more loving and caring than any earthly father or mother.

Back to my wonderful singing. When I was a child, I used to sing a duet with my sister ‘Come my dear Franz, just one more dance.” A Harry Belafonte song. Very odd to sing to your sister, although I was too young to understand what it was about. We were quite a musical family, I hesitate to say Von Trappe, because that would be totally untrue. My Granma used to sing on stage at the local Church social club. My mum sang at Church but was always very nervous and sang quietly. On long car journeys my mum and dad sang duets and sometimes all five of us children joined in. ‘Puff the magic dragon’ sounds amazing sung by seven voices in an estate car on a motorway.

You’re probably thinking, “where can I get to hear this incredible voice?” That’s just rude, if you weren’t thinking that. Well I’m sorry to tell you I no longer sing on stage, although there are videos that change hands for incredible amounts of money, I think the last sold for…. Wait they don’t sell at all. But I do still occasionally sing in public. I have been known to burst out in song with the odd line as we are wheeling along Wellington High St. What a treat you are in for if you pass us by. It’s a shame you’ll miss the infamous bottom wiggling from ‘Lest we forget.’ You just need to track down a video from Nailsea Musicals. They are as rare as hens’ teeth.

Being limited and long term ill doesn’t have to make you miserable. Find something to hold onto. Focus on what is good. Find that inner peace and joy. I would obviously say seek God and he will be found.

Check out Alpha www.alpha.org it’s a way to explore Christianity.

Lovely day

As I sit in the conservatory at Cleve Spa Coffee shop, the tune playing in the main area is “Lovely day.” Our wedding was before the days of home video cameras being common place; the early 1980’s. But a friend made an 8mm cine of the glorious event, now copied digitally of course. He used the song “Lovely day” as a backing track at the beginning, while Mary and I were getting ready.

Mary and I fell in love the moment our eyes met. I was going to say across a crowded room but that would be cliché. Besides it was in her office. I went to do some voluntary work for her as a photographer. She was a Hearing Therapist at Stoke Mandeville Hospital, I was waiting for a new job to start and at a loose end. She needed photos to illustrate her talks and I was a keen amateur photographer. Between jobs at a photographic studio in London and an electronics distribution office in Aylesbury. Quite a change and another story.

I asked Mary to marry me after we had gone out for 2 weeks, I left it so long as I didn’t want to rush into it. Mind you our parents insisted we waited a year before we got married. Now 37 years later I think things have worked out OK from our love at first sight marriage. I will pause here for the oohs and ahhs. Or is this too sugary and sweet for you?

The film of our wedding starts with a shot of two houses next to each other, Mary’s parents, where she was getting ready and their neighbours, where I was preparing. My mum pops her head out of the door of Mary’s parents house. Presumably checking the coast is clear for Mary to go to the hairdresser. I really don’t know. She could have been checking the weather.

The scene changes to an impossibly young man trying on a jacket and adjusting his tie. I think it might be me. I look so thin I am almost invisible sideways on. Then we move to a shot of Mary, her mum and sister. Veils are being tried out over the wedding dress. It’s all very romantic and very 1980’s in fashion.

Next we see the Methodist Church where we were married. Mary’s brother is playing the organ. ‘Only fools rush in’ not a song I knew at the time. I didn’t even know it went on to say “I can’t help falling in love with you.” I thought he was just being ironic, because I’d asked Mary to marry me so quickly.

I remember that day so well. My knees knocked so loudly people at the back went to answer the door. I was so rigid with fear I couldn’t even turn to face Mary as she walked up the aisle. I wanted the floor to swallow me up, I was so nervous. But, I was also very happy to be marrying the woman I loved. At the reception my speech, which was the first bit of public speaking I had ever done, should have indicated to me never to repeat it. I listen to the film recording ever since in horror. No one would believe I would go on to speak to crowds of hundreds both in the open air and in large halls. When I have spoken since I have been as nervous as on that day, but I’ve learnt to control it better. I have also been taught to speak from my chest not my nose since that day. I can’t replicate the way I spoke at the wedding, just as well.

One of the many things I miss, being limited by health, is public speaking. Specifically what a lot of people would call preaching. Although that term has gained a negative meaning to most people. We say “don’t preach at me.” Meaning, don’t tell me what to do. Or we talk about preaching, meaning people who stand on the streets shouting condemnation at passers by. Telling them they are going to hell. Neither description fits what I do.

When I preach, or as I would rather describe it, talk about God. I share about God’s love. How we all fail and need help. How God knows that, and wants to reach out to us through Jesus. I share about Jesus, who says “Come to me all who are weary and heavy laden and I will give you rest.”

I saw a cartoon on facebook recently that was an atheist view of life, after leaving religion. It showed a line of people under umbrellas in the rain. One in the middle, supposedly having left religion, was putting down their umbrella and finding it was not raining. I found it very funny to see a cartoon depicting the exact opposite of reality. Life can feel very tough without God. We can feel inadequate and try to measure up to standards of the world that are impossible to meet. We end up feeling stressed, overworked, overwhelmed and desperate. The image of rain captures that feeling quite well. Then when we turn to God, through Jesus, it’s as if a weight is lifted from us. It feels like the sun starts to shine, even in the dark. Some people describe it as like a new life. If that is preaching, then I am guilty. What I don’t do is condemnation or judgment.

On our wedding day I managed to break my cufflinks cutting the cake. Why I was using my cufflinks to cut the cake? I don’t know. Actually I was holding Mary’s hands over the top of a knife handle as we attempted to cut the cake. We forgot where the soft part of the icing was. So we were pressing too hard. Rather than just mark the icing we were determined to cut the cake. All the pressure on the hard royal icing with two pairs of hands pressing down broke my cufflinks. My dad gave me his spare pair, which I still have.

Earlier in the day I had taken photos of Mary while she was being photographed by the professional. On the film you see me in the walking backwards motor drive firing, taking multi shots of Mary, looking very cool. Mind you the most impressive bit of photography I did at a wedding was when I married my sister. No there was no incest. I was able to conduct her marriage as a Methodist Minister in training at the time, in the 1980’s. But, as I also volunteered to take her wedding photos I pronounced the final blessing, then ran, I mean processed speedily, ahead of the bride and groom down the aisle so I could photograph them walking down. I wasn’t in as many photos as would normally be expected.

Back to our wedding. One other funny thing happened. On arrival at the church Mary and her Dad arrived without attendant bridesmaids and the photographer wanted to capture them arriving. The chauffeur kindly obliged in preventing Mary’s train from getting dirty. He carefully ducked behind Mary and her Dad, trying to keep out of sight, holding the train. The problem being he was very tall and large, whereas Mary and her Dad are shorter and slight. They were not designed to hide him. Somehow he was invisible on the photos. But he is beautifully captured ducking behind them up the driveway to the church on the Cine film. It is a very funny sight as he impersonates Quasimodo, with Mary and her Dad apparently oblivious in front.

While on the subject of weddings we once went to a family wedding where the announcement at the speeches was, “my Lords, Ladies and gentlemen.” No I am not showing off, the Queen wasn’t there, she was busy.

I can’t believe that as I finish this blog we are still at the Spa. We have had a light lunch and an afternoon drink, so perhaps that’s alright. What a lot of memories are triggered by a song.

Me and my big mouth

I think you could say I am direct, blunt, in your face, a ‘say it as it is’ type of a guy. I tend to speak a bit too quickly and be a bit too blunt. I used to think I was just being honest and open, as I’ve got older, I realise it can cause problems and sound rude.

I remember when I was 16 in the 1970’s, that can’t be right, it makes me in my fifties now. Surely, I’m not that old. So, I had just started work and I was working in London in a photographic studio. Not as glamorous as it sounds, because I worked in the black and white processing lab attached to the studio. I printed up photos for professional photographers that were used in magazines and for displays. There was also a larger photo department with a De Vere Mk 10 enlarger, that printed huge black and white photos many feet wide and high. These were used in exhibitions and on one off billboards. These days such things are produced by large laser printers. In those days a small run of prints had to be done photographically as any other form of printing cost too much to set up for a small run.

I couldn’t find a photo of the De Vere Mk 10, so this is a later floor enlarger
to give you an idea of scale.

A large format negative

I am going to make an aside here, this was the 1970’s and I know a lot of people post things on Facebook about a ‘rose tinted’ lack of health and safety in the 1970’s. I just want to balance that a little, health and safety can be a good thing. I was a trainee along with a young girl also about 16 at this photographic studio. We were used as human packing to transport precious photos to exhibitions. Yes, you heard right. When the company had high value photos to take to an exhibition, evidently higher value than us. They put the two of us in the back of the van to hold the large photos and stop them getting damaged, no concern for us getting damaged. The van driver was not careful in his driving around London. He made no allowance for having two young people unsecured in the back. Both our hands were holding the photos and there were no seats, so we were leaning, half crouching against the side of the van. One day he slammed the brakes on so hard we were both thrown forward. The girl was hurt much more than I was, and she never returned to working at that company. I heard that she had whiplash and back injuries and couldn’t work at first. I really hope she recovered. I for one am glad that companies can’t get away with such things now.

Back to the photo studio. I coveted working in the large printing department. It had a photographic enlarger that was so large it was on a train track, used large negatives, and projected the image onto rolls of photo sensitive paper held on a long wall by magnets. The room was huge, a bit cold in winter, but a fun place to be for a young man. To develop the exposed paper, you rolled it through giant baths of processing chemicals. I would be sent down occasionally to help with this part if there was a big job on. Rolling the paper through developer, stop bath, fixing agent and finally a wash bath. The sheer scale was exciting. The guy who worked there was called Gary and one day he told me in confidence that he was leaving for a better job. But he also said:

“Don’t tell Alan.” That was our boss. “I will tell him at the right time, once it’s all finalised.”

What did I do in my excitement at hearing the job was becoming available? Next time I saw Alan, I totally forgot I was meant to keep it a secret and blurted out.

“Can I have Gary’s job when he leaves?”

I was not very popular with Gary after that. Don’t worry, he did get his new job. But you know the worst bit? I didn’t even get his job after he left. Apparently, I was too young and inexperienced, as if.

My big mouth seems to have a habit of speaking too quickly. A few years later I was working as a manager in a company. Yes, I had worked my way up over the years and it wasn’t a photographic company. I came back from lunch one day to find that my staff had received a visit from a lady in accounts who enjoyed trouble making. She had spent a while stirring up dissent. Not knowing that she had walked in behind me while one of my staff told me this. I then expressed my opinion of her trouble making nature. I don’t think I really held back on saying what a pain she could be. I did wonder why the chap I was speaking to was looking behind me rather than at me as I spoke. Lessons learnt, don’t be rude about people even if they cause you difficulties. Always look behind you. Think before you speak.

Those who have read my other blogs, will know I am a Christian. As a Christian I know it’s important to be loving towards everyone. As a human being, I fail in that all the time. God loves us not because we are perfect, but even though we are not. A church is just a place full of sinners who recognise the fact and are asking God’s help. OK, preach over, back to the blog.

I also seem to have a similar tendency to be blunt and say the wrong thing in what I write. I have noted that some things I say have been misconstrued. Odd really considering that my first blog was about misunderstandings in language. The way carers sometimes say things (“Shall we get dressed now?) Pot, kettle and black jump to mind. Of course, my carers do point out my inconsistency to me, with a raised eyebrow. Especially when I say,

“Shall we hoover the floor now?”

It seems somehow more inclusive saying it that way, it’s also good to say to Mary when she comes back:

“We washed up, we tidied the front room and we got me washed and dressed.”

I feel I really achieved a lot in my deputising. Supervision is an important role, even when it involves me doing absolutely nothing.

I am sure that when I am old and grey. When I am older and greyer. When I am extremely old and totally bald. Well, I am hopeful that at some point before I die, I will become better at thinking before I speak and being gentler in my words. My big mouth does seem to get me in trouble.

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Strangers on a train

“I just wish I could be spontaneous.” This was said by another wheelchair user on the train to Dawlish on Thursday.

He had decided to travel by train, the first time in years. In common with all wheelchair users he was forced to plan ahead. You can’t just leap on a train in a wheelchair. Well, you can’t leap for a start. To begin with there are only two or maximum four wheelchair spaces. Two being the most common, four on the very long trains. When there are four, two are in first class.

Wheelchair spaces double or is it treble use anyway, as pushchair and large luggage areas. Why is there no other space on trains, or buses for that matter for pushchairs or large luggage? Are wheelchairs really just an afterthought? On a train at least you can usually book the wheelchair space. So, you have some right to the space. On a bus you rely on the goodwill of the other passengers to move. No law forces them to move. That’s right, there is no law enforceable about wheelchair spaces. A wheelchair user can be left stranded if an intransigent passenger refuses to move their stuff from a bus or train space. There needs to be a change in the law. Wheelchair users have no option to fold up their chair and sit themselves on their knee as a parent does with a child in a pushchair. Wheelchairs don’t fit down the aisles as luggage does. The wheelchair space is an essential, not a nicety.

One of the many wheelchair space layouts on a train

Back to our trip to Dawlish. Yesterday was the first time I have travelled with a second wheelchair alongside. We do tend to travel at less popular times and have only travelled Taunton to Dawlish. It was an odd experience, two wheelchairs in the two spaces make it tight for turning. I know its supposedly designed for two, but I have a large power wheelchair. Fortunately, the other guy had a smaller push wheelchair. The other wheelchair user was very chatty. What struck me most was his observation that I have heard before and noticed myself. People often think that the fact you are in a wheelchair gives them the right to offer advice. I suppose it’s a natural step on from the help folk offer, people are often very helpful. But advice is a mixed blessing, especially for this chap. He got the same unwanted advice repeatedly:

“why don’t you get a power wheelchair?”

He also got lots of offers to be pushed. As an independent young man, he particularly disliked that. He just wanted to be treated normally. Of course, that’s not going to happen. You can’t be treated normally in a wheelchair; our world is not setup for wheelchairs. Everywhere you go there are steps and narrow doorways. Doors that need holding open, tight corners, toilets that are too small or don’t have hoists etc. In a wheelchair you can’t do housework without a lot of adaptations and help. Kitchens need complete redesigns to be accessible, likewise bathrooms. I understand his desire, but reality is going to fight him. He has the muscular and physical strength to do the things I can’t and is still limited by his surroundings.

For myself I get lots of offers of help, Mary isn’t very tall, so folk can see she struggles operating my chair. I don’t mind that although I find it a surprise when people smile at me, men and women. I don’t mind the women. I guess it’s to be encouraging and positive. The last time this used to happened was many years ago when one of my sons was a baby and I was carrying him on my back. But I guess all the young ladies were smiling at him, not me. It’s just that his head was so close to mine… I wonder if there is a baby just behind my head in the wheelchair these days.

Our trip to Dawlish was to visit my 92-year-old father in law. He has made an amazing recovery after an emergency operation a few weeks ago and a time in ICU. He is an inspiration, how he has pulled round after that. We were out on the sea front walking and wheeling in the unexpected sunshine. What does BBC weather know anyway? On our way to Coryton Cove, it’s one of our favourite jaunts and a place Dad walks to most days. Now the weather has improved, the café at Coryton is open, so we stopped there for a coffee.

I grabbed a table; it was trying to run away. I had a choice of two, one next to a group of French ladies, just drying off from a swim and enjoying a fairly loud chat and even a sing. As we were still recovering from the train ride where just six ladies had impersonated a crowd of several thousand, I was not keen to choose that table. I looked to the other at the far end. It had a mixed group around it, equally loud. The table between the two had people sitting at it. In the end I chose the table near the Gallic ladies. I’ve always enjoyed the odd spattering of French, especially a good song. I have never been able to speak French, my French teacher at school threw her hands up in defeat. I was surprised though as I thought an F in French O level meant fantastic, but apparently it meant fail.

Mary and her Dad were buying the coffees, hence my agonising over the choice of tables. The position I had taken placed the rear of my wheelchair towards a slight step. I kept saying to myself, “don’t forget, do not go backwards.” Fortunately, I didn’t. The coffee was very nice for a paper cup, portable cabin coffee. The wind was light, the sun warm and the company wonderful. We then travelled to the URC Church for lunch.

On route to the Church, we saw the famous Dawlish black swans. They were next to the fountain near the viaduct. I was commenting to Mary on how the wind looked like it was blowing the water from the fountain towards the path, when it hit me, the water that is. Mary decided to stop a moment and enjoy looking at the swans. Not in anyway related to me getting a light shower. How refreshing on a hot day to get a light splash of fountain water, is what I wasn’t thinking as I asked Mary to move on.

Sausage and mash, is there anything better? Yes, sausage and mash without broccoli and cabbage! I couldn’t believe it, I ordered sausage and mash at the URC Church café and expected either onion gravy with peas or baked beans. But not gravy, carrots, broccoli, and cabbage. What is happening to the world? I know there are some serious issues, but I didn’t know it had got this bad. Still at least I could leave the cabbage and broccoli. The URC Church café do a main, pudding and drink for £5, seems good value. It’s also a nice big space for my wheelchair and has a ramp access. They let me have a cheese scone as my pudding as I don’t eat sweet stuff. It’s a choice I made a few months ago. The easiest thing to do when you are mobility limited is to eat. The easiest things to eat are sweet things. I can eat a packet of biscuits, or a bar of chocolate at one go. So, if I don’t have those things at all, it stops me gaining weight. That way I won’t end up needing an extra-large wheelchair or bed. Doesn’t stop me fancying sweet stuff, but I can just about keep off them.

After lunch we had a short time to visit Dads flat before our train home. Dad’s flat is a tight fit for my wheelchair, but just about possible. I was able to sort out his laptop for him. Nothing major, such things would be beyond me now. Just checking why the internet had lost connection. Then it was time to head to the station, the required twenty minutes before the train. You can’t arrive last minute when you have assisted travel.

The sun was really beating down on our trip to the station and on the platform. If you don’t know Dawlish station it overlooks the sea. In a storm the sea overflows the station. We looked out at the flat, glistening ocean. A beautiful end to a very enjoyable day.

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How the station looked when we were there
This is what can happen to Dawlish Station in a storm

A fragrant offering

For Father’s Day, no don’t panic, it isn’t until 16th June. Mary is planning on buying me some aftershave. No, let’s be posh, eau de toilette. No, I’m not posh, some smelly stuff to slap on my chops. In order to choose the right one as a surprise, well maybe not such a surprise, Mary asked the staff at Superdrug. That’s right we use only the highest-class shops. She asked them to spray samples of a few possible scents on cards. These cards came home into my bedroom, come lounge, come everything room (see my blog “Bedroom, dining room, lounge, toilet”) where I smelt them to see which I liked. Having selected three, we visited the shop to have those three sprayed onto my skin. We then travelled on to the Cleve Spa. I don’t know what the staff thought when serving me coffee. Probably something like:

“Wow! Mike smells amazing.”

Or possibly more likely:

“Why does it suddenly smell like a Turkish boudoir in here?”

Either way the coffee shop certainly smelt very different around where I sat. The three scents wafted around on the warm air. I was sitting in the conservatory and the door was open. A few people said hello, I’d like to think it’s because of the scent. But they were probably just friendly.

While at the Spa Mary and I were trying to decide which of the three scents was best. One problem, we both forgot where they had sprayed them. Was it inside or outside my arms and the back of which Hand? We must have looked very funny taking turns sniffing my arms and hands. At one point Mary inhaled deeply then said, “no, that was just sweat.”

On our return home, it being a warm day and the scented cards being left in my room, we were hit by a wall of scent. I am very curious what my carers tomorrow will say. I’ve been in this room for several hours and the smell is still overpowering. Walking in fresh I expect they will either be knocked backwards out of the door or pass out in a faint. They will certainly be in for a surprise, not necessarily a good one. Whether they will be in a fit state to do any work remains to be seen.

Scent is a very dangerous thing. Mind you anyone who ever watched a Lynx advert knows that. After shave can cause hoards of women to chase you down the street. Not that I am influenced by advertising.

Smells are an odd thing. We tend to think only unpleasant smells are objectionable. There are certainly plenty of unpleasant smells in a room that plays as many functions as mine, including as my toilet. But even nice smells can be unpleasant in volume. I can think of many occasions where people have been so generous with their shower gel that the scent of it winds you. Then there are the people who use so much scented talc it literally sucks the air from your lungs. What about those who think perfume only works when a whole bottle is applied or the person who thinks deodorant sprays must be applied for ten minutes at a time. I think we all know such people. Maybe I have embarrassed you into realising one of those descriptions fits you, sorry.

Back to Father’s Day. I only want to mention it twice to make sure it isn’t forgotten. Anyone would think I’m a Father. Oh yes, I am. I’m going to bring in the obligatory statement everyone makes these days. Father’s Day can apply to any significant male figure in your life and if you only have negative male figures in your life, I am sorry to hear that. I also realise for those whose Dads are no longer around it’s a difficult time. I’m saying all this and it’s still a few weeks away. That was such a long statement I nearly forgot what I was saying.

The fragrance was chosen from the three, spray tested on my body and will no doubt be bought. But that of course will be a complete surprise to me. So, I wait with baited nose for my present. Meanwhile I am trying to get to sleep with a rather strong smell of several after shaves in the air.

This morning I called Mary down as usual to help me on the commode. For some reason she laughed when I told her my latest blog was called “A fragrant offering.” I can’t think what smell make her think that was funny.

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Science fiction or fact

“Pass me the proton gun”. That’s what I felt like saying after I heard that one of my tablets is called a Proton Pump Inhibitor. Surely it’s a laser gun, not a tablet, or at least an inter dimensional portal opening device.

It feels like medical science has shot on so fast in the last few years that the technology on my old favourite TV shows look like cave man tech in comparison. I used to think Star Trek had such amazing equipment. But in the early shows they just lay on a medical bed and a gigantic display read out heart rate and other vitals. You can now buy a ring on Amazon that will give you heart rate, oxygen and sleep patterns, a ring! Just about any smart watch does the same, well without the oxygen read out, unless you get an add on.

Sleep monitoring ring

A couple of years ago I bought an endoscope, to look behind a radiator. An actual endoscope. That’s a fibre optic cable that enables you to view into tiny holes and gaps. They use them in medicine to view down your throat and up the other end. My endoscope plugged into my laptop and enabled me to view a video feed on the laptop, now you can get Bluetooth ones that connect to your phone wirelessly and you view the feed on your phone. Of course they say, not for medical use. But they are effectively the same devices, available for a few quid. Don’t tell me no one is tempted to use them medically, hopefully none of my friends.

Then there’s the space age materials, around today. Pressure relieving gels made of silicone, breathable fabrics, super absorbent pads, and all the new polymers, plastics to you and I. Then what about the leap forward in electronic controls. I was looking at, well to be honest I was coveting, an amazing hospital bed on eBay. It was able to profile into a seat from a bed. The controls on it would not look out of place on a space ship. Multiple controls, read outs, even a colour LCD display. These days the simple controls on beds, chairs, wheelchairs and hoists are touch control. They use a circuit board level switches under the plastic cover. The more advanced even use the conducive type found on smart phone screens. These are technologies that didn’t exist when I was younger.

You can monitor most medical read outs via your smart phone and let’s face it a smart phone is one of the most incredible advances out. If you had told me when I was a teenager, much less a child, that I would be able to own a hand held computer that could: communicate with anyone on the planet with video and sound. Run so many applications the mind boggles. Track my location to a few metres. Speak to me and understand me. Translate most languages, well sort of. Be pointed at an object or place and tell me what it is. Take high definition photos and videos. Be a word processor, a desk top publisher, a portable power point device, an excel spread sheet, a complex calculation device, a drawing tablet, a video editor, a photo editor. I haven’t even scratched the surface. If you had said I could own one of these I would have laughed. Or I would have assumed it would be massive or cost thousands. But the vast majority of us now have and rely on smart phones.

My smart phone connects to my Hive heating, can check my cctv cameras, switch on my smart plugs and lights. It also links to my Amazon Alexa system. How much longer before we routinely get smart monitoring and medicine dispensing for dementia patients. I believe it already exists. Or how about a push button food preparation for people like me. Where a meal is taken from the fridge or freezer, heated and delivered to my bed robotically. Personally, although I could see that and even robotic care as possible in the future, I would never choose to replace human beings with machines. You would lose so much. Human contact is not replaceable by machines and it is vital to our wellbeing.

I like technology, it’s fun and helpful. But it has its place and its limits.

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