Turning the world upside down

When I wrote this, the rain was hammering onto the bird table roof, glistening drops of water hanging all around its edges. I could see almost horizontal sheets of rain blowing across the garden. The sound of raindrops on our conservatory was like an army of marching ants in tin boots. Wind was blowing the trees, bushes and grasses in a wild dervish. We had been back home for just under an hour and I said to Mary, “I’m glad it wasn’t raining like that when we were out.” We got wet, but not that wet.

The rain then stopped, and the sun shone.

One thing we know about in England is the weather. Have you noticed how many words we have for rain, it’s drizzling, damping down, torrential, pouring, hammering, misty, cats and dogs, the heavens opened, I am sure you know more. What’s our opening line in conversation? It’s always the weather. “Hasn’t it been hot lately?” “When will this rain stop?” Did you see that lightening?” We don’t just talk about it we complain about it. When it’s hot, it’s too hot, then next week, it’s too cold. Then we get too much rain, followed by, yes drought. If it’s sunny it’s too sunny, if there is snow it’s too deep, or too slushy, or too icy. I don’t know I have ever heard someone say, “the weather today is perfect.”

The reason that’s important is because it’s about attitude. We look at how things are not, rather than how they are. OK, I was trying to say, “the others man’s grass is always greener in a new way.” It’s why we want more of everything and what others have. It’s also why when we are well, we don’t appreciate it and when we are ill or limited, we focus on what we cannot do, rather than what we can.

We need to turn our view upside down. Turn the world upside down. Rather than look at what we want, look at what we have. Rather than what we cannot do, look at what we can. Frustration only takes hold when we try to do more than we are able or want what we can’t have.

Let me be down to earth and practical here. I spend a lot of time in a hospital type bed and the rest of my time in a power wheelchair. Most things must be fetched for me or done for me. So, I have found some things I can do and focus on enjoying those. I can write and I can use a PC. By using my good times when I have the energy to do those things, which isn’t all the time; I can have fulfilment. It gives me a sense of achievement, joy, and worth. Instead of lying around feeling useless I have found something I can do for a few hours a week. This is directly applicable to you too. There will be something you can do in every situation. Whatever our limitations there is always something. I can say that confidently because I have times, I cannot move anything. In those times I use my imagination and go on journeys in my head. Find the joy, the what you can do. Of course, if you are reading this and you are 100% well and strong, that’s great. In my experience you will still find things to be frustrated over, so same goes for you. Focus on what you can do.

We can just focus on the weather, moan about it, shelter from it, get wet or enjoy the beauty of glistening rain drops. Ski in the snow. See beauty in fallen leaves, you see where I am going with this? We could feel frustrated about what we do not have, or cannot do, or we can decide to find out what we can do and enjoy it.

Turn the world upside down. Look at it in a new way. Transform your viewpoint. Change your perspective. What can you do?

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Nearly there, keep going

We were coming up the drive of Cleve Hotel and Spa the other day and I was again taking note of their signs. “Nearly there,” and “keep going.” Of course they are to encourage you to continue on to the coffee shop, a very worthwhile place to carry on to. But it got me thinking, a very bad habit Pooh bear, as Piglet would say. Life feels a bit like a race, then when you have an accident or illness it’s as if you have tripped over in that race. Lying on the ground you watch the other racers speed by you, even the very slow ones. All those people you passed years ago, or moments ago, hare past you and disappear in the distance. It’s very disheartening and frustrating. You might feel dispirited. Even if you don’t feel you were competing in your life, you probably identify that feeling of life passing you by after an accident or illness. That frustrating feeling that you can no longer do or achieve what you once did, your old plans are destroyed.

Lying on the race track of life, looking at legs that no longer work as they once did, you can struggle. For some you might be able to stand and hobble along a bit, for others aids enable some progress. But the race seems un winnable. It’s all extremely frustrating and difficult to cope with.

Then you notice the signs all along the side of the race track of life, signs that read “nearly there.” and “Keep going.” But how can that be? The winning line is a long way off, everyone else has left you for dust. There is no way to reach the end. Then you realise the answer, it involves a paradigm shift in your point of view. Your winning post has moved. You don’t have to chase the crowd. You don’t need to follow your old path. Every step is now a win, every move you make is a victory. Each time you achieve something you have beaten the odds. With every new day that you get up and face the massive obstacles now in your path, you are a winner. The obstacles that just living put in your path make the very act of living a victory.

So this is my encouragement to us all. Keep going, not to your old goal, not to where you were going. Just keep going. You are not only nearly there, every time you struggle forward you arrive; you win, you are a winner. Well done, take courage.

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I did it my way

One of the verses of My Way, made famous by Frank Sinatra:

I’ve loved, I’ve laughed and cried

I’ve had my fill, my share of losing

And now, as tears subside, I find it all so amusing

To think I did all that

And may I say, not in a shy way

Oh, no, oh, no, not me, I did it my way

Don’t we all love to have control and do it our way?

I have been learning to write screenplays for fun. It’s a natural follow on from my love of writing. Having found a free online course, which was every bit as amazing as you’d expect for the money, I learnt one new thing. What do you expect for nothing? I thought I did well to learn anything on a free course.

Are you on the edge of your seat yet waiting to hear what I learnt? You’ll need to hang on one second because I need to take you back a step. All fiction stories have protagonists, or as they are often called heroes/heroines. These main characters have to want something for a story to be interesting, but not just want something, they need to be blocked from getting it. Sorry if I have spoilt all your favourite stories.

Think of any fiction story. Let’s take Star Wars as an example, Luke Skywalker wants to fight the Empire, but he has to stay on the farm, the storm troopers kill his family and he joins the rebel alliance. Ok I know it has more twists and turns. That’s because a plot has more to it than I have said. But the basis of all plots is a character wants something and they are blocked from getting it. Now I can tell you the new thing I learnt, drum roll please…

It’s about how a character overcomes the blocking. By the way, the character will be blocked repeatedly. The thing I learnt is to make a story satisfying, the character/hero/heroine needs to overcome the main blockages themselves. In other words not everything that blocks their path can just fall away by chance, nature, or other people’s work. That wasn’t very exciting was it.

In my example it’s the storm troopers who kill Luke’s family and initially free him to start on his path. But most of the blocks he overcomes himself. That feels more satisfying to an audience.

What on earth has this got to do with disability? It seems obvious to me that the thing you lose with disability is control over your environment and to a degree a sense that you cannot control your destiny. Immediate control of your future is definitely impeded by disabilty. How does that relate to movies and fiction? It relates because of the reason we feel satisfaction when a hero/heroine takes control and overcomes the obstacles in their path. It’s because we all want and need to feel a sense of control. So much is out of all of our control. We are limited by our physical strength, our intellect, our background, our finances, so health is just another greater limitation.

Think about your own situation. This will depend very much on where you are and where you are from. Are you bright, strong, healthy? Did you get a reasonable start in life? Do you have a strong mental attitude? These starting points are not in our control, they are how we are born or at least a product of our upbringing. People who are unintelligent, weak, mentally ill, or have a bad start in life didn’t choose that. Then what happened next for you? Was your schooling helpful, do you learn well? Or are you naturally intuitive and have a good business brain? Again these things are not totally our choice, we have more choice about them, we can develop them, we can concentrate at school and try hard or use our gifts. But we don’t completely control them. Then what about now, where are you now? Did your background and start in life translate into a good job and prospects? Were you knocked off track by something?

At any point in the process I have outlined above illness, accident or disease can strike and knock you off track. I was rapidly rising in a company when I was first ill. All my planning and hard work were knocked for six. Control is very much an illusion that is broken the moment a major life event crashes in.

We all like to sing that song “My way.” Which I quoted age the beginning. We sing with gusto because we like that image of controlling our destiny. But the reality is that life is a fragile thing. Illness, accident and even death come out of the blue. Our life can be changed suddenly and completely. The control we thought we had is shown as an illusion. The real reason we so love fiction stories and films is that it’s escapism, life isn’t like that. We know it, we feel it, but we want it to be. Whenever a movie hero overcomes a great obstacle we all shout “yes” whether out loud or in our heart, because they are living the life we want. Overcoming the impossible and taking control of their lives.

In the end I have found that the best way forward is to learn to cope within the limitations. When I was a child I used to love going into the sea on a stormy day. The waves crashing into me were so exciting. But if I tried to stand in their path, they always knocked me off my feet. Then I discovered there were two ways to prevent that. The first was to float on the water, so that I just floated over the waves. The second was to dive into them and through them head first. Life is like a great big stormy sea sometimes. If we try and stand firm against the waves we just get knocked over. But if we lay back and relax into the situation, accepting it, we float over it. Or if we face it head on diving in, we break through it. The way you face the waves of your troubles will depend on what they are and your physical strength. For me in my weakened state floating over the waves is my best course.

My way is to go with the flow. Your way is up to you.

The enemy within

In ‘Star Trek Beyond’, The Star Ship Enterprise is attacked by thousands of tiny ships. It is destroyed because there are just too many to fight. In Star Wars ‘The Empire Strikes Back.’  The strategy of the Rebel Alliance is for tiny ships to get past the major defences of the Death Star and attack it from within. In WWII one of the most effective weapons against the German forces were the many myriad of resistance fighters on the ground in occupied territories. They cut off supply lines, disrupted communications and generally caused confusion enabling a more effective attack by the main allied forces.

We are all familiar with the analogy of illness and disease as a battle. We talk of fighting illness, beating disease. Overcoming cancer. But not every illness can be fought and not all battles are seen. Many of us are being attacked by unseen forces. We have covert forces, fifth columnists, guerrillas, undercover operatives, spies working against our systems. We have nothing to fight and nowhere to aim our defences. It’s as if we are being attacked by small bands of resistance fighters disrupting our systems, or a small band of fighters has undermined our main defences and gone straight for the main operating mechanisms of our body. Or it’s like we are being attacked on so many fronts at once by such small individual things that our bodies are swamped and overwhelmed. Or perhaps all the damage has already been done, by disease, accident or injury and it’s irreversible.

Without warning we might wake one morning with a new weakness, increased pain and limitations. Instead of supply lines being cut off by resistance fighters, we have nerve endings interfered with or blood supply affected. Instead of star fighters undermining a large ship our body is undermined, our muscles are weakened, and central nervous system messed up. These things don’t respond to the usual fight response, in fact for those of us who suffer from such hidden attacks, our immune systems have been attacked first. So, a full-fledged response is just not possible. Where the attack has already happened, we are left reeling, looking at the aftermath.

We all love a good Hollywood block buster, don’t we? That point in the story, like the ones I mentioned above when the tables turn. When impossible odds are reversed, and the battle goes from being lost to being won. I am studying screenplay writing through an online course at the moment. It’s a short one that’s free online, supposed to be 2 weeks, but has just a few hours work in it. One thing you pick up fast on this course; we all know it already. Movie scripts are shaped into a pleasing form. The protagonist (hero/heroine) wants something, there is an obstacle to them getting it, they fight through and get it.

We know that in life many people want or desperately need things and most times people die without ever getting those things. I don’t mean to be negative, just realistic. I am not being defeatist to say that there are certain illnesses that you cannot fight. That once damage is done it’s often irreversible. There are times when giving up is OK; not just OK but positively helpful. You will find rest and peace if you stop fighting a lost cause. Stop banging your head against a brick wall. I have found that; I stopped fighting this illness a year or so back. Since then I find I can cope better, feel more peace and have more energy, mental and physical. Because I’m not wasting it on fighting the unwinnable. I still can’t walk or stand, but I am having fewer collapses and feeling brighter in between.

Not all battles are won by fighting. Not all victories are by overcoming the enemy. Sometimes a victory is in learning to live within your limits. Sometimes winning is to find a place of peace and acceptance of your situation. If you are newly disabled or have been for a long time but are fighting a losing battle against it. Listen to me on this; is the battle you are fighting winnable? If not, try accepting where you are and look for the good in it. Try to find a place of peace and calm amidst the storms of pain and limitations. Search for the new meaning in your life. Remember, if you have fought and fought and all you have achieved is exhaustion and despair, maybe try acceptance. It isn’t giving up, it isn’t hopelessness.

Acceptance is finding the new paradigm for your life. Accepting that change is painful, but not all bad. You are not a loser if you stop fighting, you have won, because you have overcome your disability by adapting to it. Sometimes if you cannot go through a wall, you can go around it. If the wall of your illness is too high to climb, go around it. You will find that the other side is not as horrible as you imagine. There is hope and a future even in limitation. Stop fighting and search for that.

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Do comment or get in touch with me. If what I have said has touched you I am happy to chat.

Are we there yet?

Anyone with kids will know these words, the dreaded words from the back seat on a long journey:

            ‘Are we there yet?’

Children get impatient quickly, even a short journey feels long to them. I guess that’s no surprise. They’re young and have little experience of life. Each year is a big part of their total experience, which means each day and each hour is significant to them, it feels a long time. As we grow older the years become a smaller proportion of our live. At two, a year is half their life, at 50 it’s a fiftieth. So, the years pass quicker and quicker.

The years speeding past doesn’t mean we don’t feel pain and difficulty. It doesn’t take away that sense of time dragging when we are bored or feeling that pain will never end. Time is still relative to our mood and experiences.

I realised the other day that I have been ill for about 29 years, with a 2.5-year miraculous remission between May 2015- Jan 2018. That’s a long time, a very long time, over half of my life I have been ill. I have missed family weddings, funerals, christenings and parties. Those years have passed both quickly, because I can’t believe so long has passed, and slowly; painfully slowly.

I have heard the expression, ‘life isn’t for wimps.’ I think that applies more particularly for illness. We don’t choose to be ill or disabled, but when it happens, it toughens you up. There is a grinding, interminable, wearing, mind numbing and very painful part of long-term illness; it just keeps on and on. I was watching a Hollywood movie the other day, ‘Hercules’. In common with all these types of movies, the hero had to overcome the enemy. There was a limited time for his pain and suffering, yes it was years, but in the end, he won through. Chronic illness, which to clarify means long-term, just goes on and on. You may say, yes but you had a remission of 2.5-years. I did and all that does is make me more aware of what I am missing. Anyone can put up with pain and suffering for a limited time. It’s when it is unending that true heroism comes.

Illness and disability are the greatest challenge humans face. Greater than space travel or climbing mountains, greater than building skyscrapers, greater even than overcoming global warming. How can I say such an outrageous thing? Because illness and disability affect a person at the point before, they can achieve anything else. If scientists working on global warming were struck down by a plague, the research would end. If astronauts training for space had a car crash and lost the use of their limbs, they couldn’t do the mission. All our achievements start with our human ability to do them. If we ourselves are limited, then we are either stopped completely or limited. Of course, so long as only some people are limited others can create and make equipment to help and provide support and care. But the point is that those of us who are limited have had a massive loss and need to make major changes in our lives to adapt. The longer term the illness or disability then the more life changing those adaptations are. It’s a huge challenge we face when we first become ill or disabled.

All those who have had to make these adaptations to their lives go through a grieving process. There is loss of the old, anger, frustration, a lot of tears and after a long time, eventually acceptance. But acceptance comes at a cost and all those of us who live adapted lives also live in a strange new world that is hostile to our needs. It is not deliberately hostile, in fact many people without limitations would think that the world tries very hard to adapt to us. Until they try to live in it within a wheelchair. Anyone who has lived in this world in a wheelchair knows what a hostile environment it is. This world was not designed for wheelchairs. Steps, stairs, cambers, bumps, narrow doors, narrow gaps between shelves, high counters, sharp angles, steep slopes, slippery surfaces, small spaces in public transport (when there is any at all), few disabled taxis, inaccessible swimming pools, etc. That’s just the man-made bits. Getting into the countryside or seaside is a whole other issue. The world is a hostile environment for wheelchairs. So, whenever a wheelchair user gets out and about in town that is a victory, when a wheelchair user goes on a ramble in a special buggy that’s a triumph, if a wheelchair user goes on a beach in a special buggy that is brilliant. It means we are overcoming the obstacles and achieving what is very hard. Don’t underestimate the scale of doing things that seem ordinary when you are limited.

I have written this piece not to glorify myself, but as a recognition to all those out there going through the same. I am a member of many Facebook groups for disabled and limited people who look at life positively and with hope and vision. I write this for all of us. Recognizing that as much as we find it hard sometimes getting through the day and the night; we do it. We are strong, stronger than Hercules. We are brave, braver than we ever thought possible. We are courageous, our courage may be less obvious than some. But we need courage just to go out into a world that is hostile to our needs. Even a toilet can be a dangerous place for us, pavements, roads and shop entrances can be a great challenge. It’s time we realised that every day we get through, we are achieving something great and wonderful. Life is hard for us and getting through it is an achievement; well done. Congratulate yourself each day you get through; that is no small thing.

‘Are we there yet?’ Not yet, but we are getting there, so hang on in there, be brave, be courageous, be strong.

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Skiing in a wheelchair

(Obviously it’s not me in the photo)

Have you ever looked at the review of your Google location information? Probably not, you don’t have as much time as me. Well if you ever do, you might be surprised. I have discovered some fascinating things. Apparently we had snow over summer, yes we did, you just missed it, so did I. But I know we had snow because I went skiing. You can’t ski without snow, unless it was artificial snow. Google didn’t say it was artificial, it just said I went skiing. I skied to the Cleve Hotel, I skied to Wellington Park, I even skied to the Wellington Sports centre. The odd thing was I didn’t ski back from all three, perhaps the snow had melted. But it definitely said I skied on route there.

Before you all go completely crazy shouting at your phones while walking or wheeling down the road. I don’t want to get you arrested. I know Google was wrong. Shocking words and not something you expect to hear about technology. Google was wrong, I repeated it to see how it sounded. Technology makes mistakes. It’s one of the many reasons I wouldn’t fancy the idea of being in a self driving car. Technology goes wrong; very often. I’m not sure how practical the tech desk standard response would be if applied to a self driving car, when speeding down a motorway if it goes wrong: “OK sir, if you could please switch off the car, get out, wait 10 seconds, get back in and restart it.” Not instructions I would fancy following; how about you?

Then there’s the inevitable crash, no, not car crash, although that may follow a computer crash. Does your phone, pc, iPad or tablet always work 100% of the time? You might say cars use a close operating system that is more reliable. That’s true, current cars use that system. If you have ever had a fault on your current car the garage has been puzzled by, you’ll know how reliable that is. No, you won’t get me in a self driving car. I like technology a lot, but I also know its limitations.

So Google had got it wrong, it hadn’t snowed over summer. I mean I didn’t ski over summer. But I understand why it thought I had. After all it obviously bases it’s judgement on the fact I look cool. Stop shouting at your phone, people will think you are odd. The real reason is that a wheelchair runs along smoothly at a steady pace, no bouncing like a walk and too slow for a car. If Google was truly clever they would add in a weather comparison to see if there was snow. Or they could look at history and see I always update it to wheelchair. So you see I didn’t ski after all; there’s a surprise.

If I can be serious for a moment, not sure if I can. Power wheelchairs struggle in cold weather. If it gets icy and we actually get snow; I will be stuck inside along with many power wheelchair users. The base of my battery only has 1-2” clearance and the wheels would just slip. I gather that a manual chair with a Freewheel added can cope with a little snow. Plus there are specialist power chairs capable of coping with snow. But not mine. Also there are even special wheelchairs for skiing (see photo) Guess I had better not move somewhere with deep snow.

The moral of this blog is never trust technology. No not really, the moral is don’t believe everything you read, check the facts. That includes my blogs by the way. I also just wanted to have some fun.

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Language is a curious thing

One should always know if it is you or everyone being spoken to. Isn’t language a curious thing? I got myself in trouble the other day by using “you” when I should have used “one” or perhaps “me”. Yet how many of us do that? In fact how often do we get misunderstood on texts, on social media or even in person.

I have so often been misunderstood that it may be an idea if I include a rider on all my messages, “the content of this message is open to misinterpretation.” One thing I have noticed happening more and more on social media is grammatical miscommunication. Missing commas and spelling mistakes are responsible for a lot of unnecessary anger and miscommunication. I am not the worlds best speller, and grammar has always been a mystery to me. But I have a basic grasp, enough to know the difference between there, they’re, and their, it’s and its, led and lead, lose and loose, who’s and whose, and lots of others. It’s when words like these are used wrongly, that sentences get confusing.

As for punctuation well that is vital, life saving you might say. After all punctuation saves lives: “Let’s eat grandma!” Would be horrendous.

Whereas to say: “Let’s eat, grandma!” Is a pleasant invitation. That little comma is so important to the meaning of the sentence.

I have written before, about the way we can misunderstand what people mean, when they say you are “hot.” Perhaps deliberately misunderstand, in some cases. There are so many words that applies to. Especially now, even saying something is, “sick” can have different meanings, or “cool”. What about saying you “feel” something, that has changed its meaning since I was a child. We live in a confusing world in which it’s easy to be misunderstood. Not just across generations, but within generations. Even words that you might think we would have a shared meaning for; we don’t. Think of, “social” that could mean, a group, being friendly, the benefit system, and a lot of other variations. Then what about “pain”, you’re a pain, I’m in pain, I feel pain in my heart, the pain is excruciating, that’s painful, tell me where the pain is, he’s such a pain, etc. Think about “disability”, there’s a word dripping with loads of meaning. To some it means limitation, to others a chance to break through those limitations, to others it means malingering, to others destroyed lives, to others it just means a wheelchair, to some it conjures up particular illnesses or conditions, to others it just brings an image of a blue badge. Words have so many meanings, to so many people.

Our experience of life and the people we meet, shape our expectations of words. Not just our education. If you have direct experience of something; you see it differently. It’s interesting how films and dramas often change people’s perspectives on issues. We sometimes need to get inside someone else’s head, or walk in their shoes to appreciate their suffering or need. That’s not true of everyone. Some are more naturally empathic than others.

Language can separate us, and cause problems, because good communication is vital. Understanding each other is so important. The more we see another person as alien, different or the enemy. The easier it is to discount them, ignore them, and mistreat them. If we don’t directly mistreat them, then we can easily allow it to happen. We must learn about each other, communicate well with each other and try to understand each other. Otherwise we are bound to have friction, difficulty and fights.

Language then, is a curious thing, but also a vitally important thing. We should be careful how we use it. Words are powerful, communication is important. We need to use it wisely so that we learn about and stay on good terms with each other.

Is it a bird, is it a plane?

We all know those immortal lines and what comes next, it’s Superman. But in my case, it’s supergal, wpsupergal to be precise. I am not brilliant at sorting out websites. I am of course brilliant at absolutely everything else; I wish. So, my blog site has been a bit of a mess for some time. Well a lot of a mess actually. Some of the buttons didn’t work, pages were missing, links didn’t work. Basic functions just weren’t there. Navigating my blog site was like shooting the rapids, lots of fun, but watch out for the rocks.

Then I decided that enough was enough and it needed sorting out. I found a site called Fiverr where lots of people offer their services at rates varying from a few quid to hundreds. I wasn’t sure how to chose so I went on instinct. I think God often prompts us that way. I found a young lady called wpsupergal and I asked what she would charge to sort my site out. I explained the purpose of my site. That it’s a source of help, advice and entertainment for those with illnesses and limitations or those interested in the issues. I also explained that I funded it myself and didn’t charge for the site, so I was hoping it wouldn’t cost too much.

Wpsupergal said don’t worry about the cost she would have a look at my site for me. I expected her to tweak a couple of things. Well actually she has completely fixed it. Everything now works as it should. There is now a translate button, just as well as I have many visitors from abroad. You can see how many visitors I have had. Buttons are easy to access and click if you want to like, share or comment. You can even contact me with ease now. It is amazing, I am blown away by all she has done and all the time she put into it. Thank you wpsupergal, you really are super. I pray that you will be blessed with loads of business and customers, you deserve to succeed, you are a wonderful lady.

So, if you are accessing this blog on my site, look around, good isn’t it? If not, then check out my site, it is so much better and easier to navigate.

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Macro and Micro Society

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

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

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

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

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Watching the world go by

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

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

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

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

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

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

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The things people say

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

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

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

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

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

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

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

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

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

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

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

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Inspiration versus concentration

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

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

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

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

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

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

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

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Mirror, mirror on the wall

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

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

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

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

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

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

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

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

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

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

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The problem with hedonism

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

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

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

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

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

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

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

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

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

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Not with a bang but a whimper

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

This is the way the world ends

This is the way the world ends

This is the way the world ends

Not with a bang but a whimper

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

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

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

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

It’s not the despair, it’s the hope

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

Poster from the movie clockwise

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

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

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

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

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

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

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

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

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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.

If you have enjoyed this blog, please click like and follow me.

I love to hear feedback from my readers.

Do read my other blogs, I write factual, fiction and poetry.

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