Month: Sep 2019

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.

Now that it’s so easy like, share or comment.

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