Life Is But A Dream

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

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

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

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

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

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

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

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

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False advertising

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

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

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

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

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

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

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

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

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

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

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Disability Top Trumps

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

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

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

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

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

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

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

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

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

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

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

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M&M

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

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

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

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

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

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

In future just take all your food advice from me.

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All Encompassing Fact

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

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

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

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

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

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

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

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

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

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

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