Category: Health

I still remember writing my first stories at school. They were all horror tales. Now I can’t even read horror. If I could manage it, you’d find me under my bed at the very mention of something ghostly.

I have noticed a trend in the media in recent years. A lot of actors appearing in wheelchairs and with various disabilities. It’s an interesting move and long overdue. But does it raise awareness of disability? Or merely place disabled people on view? Perhaps tick a box or two?

Put a person in a wheelchair answering a phone and you only show an audience that we exist. It includes us in the public eye. We are no longer ignored. ‘Does he take sugar?’ ‘Wait I’ll ask him.’ But putting disabled people on screen or on a billboard doesn’t say anything about who we are.

The way to do that, is to tell our stories. If you write a love story about people in wheelchairs, then people understand something about who we are, what makes us tick. Create films and dramas about disabled people living their lives; then everyone gets an insight into the day to day realities of disability.

You might say there are loads of documentaries that do just that. But documentaries are a particular type of media. They focus on certain areas and miss out others. Imagine if the only coverage of non-disabled lives was through documentaries. We would have no drama, no comedy, no murder mysteries. Why is fiction focussed around disability so lacking. Are we a different category to other parts of society. One that is either undeserving of fiction stories or perhaps, less interesting?

We need more stories about ordinary disabled people, because we are extraordinary. When illness or accident robs us of our legs, we overcome the limitations by using wheels. When disease and pain crash into our lives, we push through. When everything comes against us, we keep going. Disabled people are shining examples of hope in the face of adversity. Human ingenuity and strength overcoming all odds. Our lives are interesting, dramatic, criss-crossed with tears and laughter. The stories that can be told about disabled people are every bit as exciting, varied, funny, sad, dramatic and mysterious as any other story ever told.

Yet stories about disabled people are in short supply. That needs to change. We make up a significant part of the population 29.5% in 2021(1). Stories aid communication and information. They are the way to fight fear and misunderstanding. Stories have always been how humans have shared an understanding with each other. Not just factual tales, but drama and comedy. It is a wonderful reality that more disabled people have entered the comedy arena. Now is the time to extend that into fictional stories about our lives.

Telling our stories will help the world see us more clearly.

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 1:https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthandwellbeing/bulletins/disabilityenglandandwales/census2021#:~:text=In%20England%2C%20the%20census%20data,are%20disabled%20within%20the%20household

I often hear people ask questions about how to cope once they are stuck at home due to illness, accident or disability.

First, briefly you need to know that I understand. I live a life of limitation. Even though we now live in an accessible home, I still spend a massive amount of time limited to my bed. Pain dominates my days. I really do understand. I have learnt a thing or two about coping over the years. These are the things that helped me.

The first thing to say is that it’s OK to grieve over loss. In fact it is healthy to do so. Acknowledging our loss is an important step in moving forward. But staying in that grief and sadness forever is not healthy or helpful. So I have found that I needed to tackle my attitude.

Attitude is the biggest key to how we feel. Look at it this way, when your life falls apart and everything changes you still have choice about how you think. You still have some control. You have a choice of how you look at things. You can control how you think about what has happened. I made a conscious decision to be positive. I do not feel sorry for myself. That way lies despair and hopelessness. Every day when I wake up I have that choice. I have found it is not a one time thing. When I am hit anew by pain. When I feel afresh my limitations. I have to remind myself:

I am NOT going to give up.

I am NOT going to feel sorry for myself.

I am NOT going to focus on the negative.

Instead I DO focus on the positive, however small that is. (Warm blankets, a glass of water, programmes I enjoy on TV, friendly faces… whatever it is)

I DO keep going.

I DO feel joy. Joy is the result of all the other things I outlined above.

If you rail and rant and fight against the limitations that only leads to frustration and pain. I liken it to the way you deal with a massive wave in the sea. Can you picture that?

If you try and stand up when a giant wave comes at you, then you get knocked over and winded. If you float over it and go with it then you will not be flattened or winded, you will be lifted up by it and float upwards. Go with the difficulty rather than fight it. Allow new ways of coping to naturally show themselves after you have had the old ones washed away. They say change is painful, yes it is. But it is even more painful when you resist it. It’s easier to get through difficult times if you stay positive looking for the good that will come of it.

Attitude is the key to everything. It changes how we feel and how we act. Once we have acknowledged the pain and loss. We choose how we react to it. Then we can live a life within those new limitations and still find joy. I don’t claim it is easy, but you will find it better than sinking beneath the waves of despair.

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Some time ago I wrote a blog ‘Fly by Wire.’ It occurred to me that most people would not get that concept. But almost everyone will have used a PC, tablet, smartphone or smart tech. So, you will get this:

You want to do something on your PC, tablet or Smart phone. Open an app, check an email, play a game, write a blog or use a smart devise. You use the screen, keyboard or mouse and there is a delay or it does not quite do what you want. You ask a smart devise to do something and it ignores you. Frustrating eh? All forms of electronics devices, even Apple products, yes I really invoked that sacred name; can have delays. I know because I have an iPad and it can be unresponsive at times. Any complaints about that comment please send to: complaints@mikesnotlisteningnow.org.com.uk.eu

My point, because I always have one is this: trying to control an electronic device is one step removed from the actual physical devise. No matter how good the interface (that is just the bit that enables you to control the device) you are always a step or more away from the actual hardware, (the device itself.) Be that a PC, smartphone, tablet, iPhone, Kindle, Echo, Ring Doorbell whatever smart device. There is something between you and it (wiring, circuit board, touch screen, mouse, keyboard, wireless connection)

It gets frustrating when that ‘something,’ that extra layer, that one step of control, is too slow or sticky. It doesn’t have to be very slow either. Even a few micro seconds feels slow when you are using a smartphone or a computer. You press a button and there is a fraction of a seconds delay. You move a mouse and the thing you are moving is not quite moving at the same time as your movements. You click a keyboard or on a screen and the response is just a fraction behind. You scroll and the screen does not refresh at the rate of your viewing. You all know what I am talking about. That frustration when an electronic device plays catch up. No matter how small a delay.

Now apply that sense of delay, lack of response, not doing what you expect, to the human body. Imagine that your brain, your understanding, was you as a user of a device, and your body was that device. You want to move your legs, but there is a delay between trying to do that and it happening. Or your legs don’t respond in the way expected. It’s not that you cannot move them, they are not responding as expected. It feels as if they are ‘one step removed.’ As if the control system is broken.

I believe this is where a lot of the misunderstanding about disability comes from. Because a lot of us with disabilities have neurological conditions. The nervous system is the equivalent of the control system in a PC or smart device. It sends and receives signals between the brain and body. You start messing with that, even a little and you get delays and messed up signals. That is what diseases do, they mess with that.

Neurological conditions are many and varied. But a common feature is fluctuation. My earlier illustration might help you understand. You know how sometimes your computer or smartphone just won’t do what you want. Other times it runs as smooth as butter. Then there are times it gives an occasional glitch? Diseases can be like that, they can vary hour by hour, minute by minute, day by day. Someone can take a few steps but still be a wheelchair user. MS is one of the most confusing conditions for an outsider to view. A sufferer can look normal one day and be totally unable to walk the next. But if you remember damaged signal lines, faulty connections, it makes sense. The problem can fluctuate.

In my own case, my legs do not respond as I want them to. I can move them, but it feels just like using a control device that is one step removed. They respond sluggishly and in the way they want rather than as I want. They also lack stability and reliability. I can’t stand up or walk on my legs. Imagine it this way, you have a robotic pair of legs with a seat on. It is operated by a remote control. Every time you test it, the legs wobble or collapse. Would you sit on that seat and try to walk the legs around? My legs feel to me as unreliable as that. They are not a safe and reliable platform.

Another way to understand a bit about neurological conditions and the disconnect they bring is this: Have you ever been so exhausted/over tired that your body does not feel your own? That sense that as you walk your legs and arms are heavy and disconnected. The problem of trying to pick things up, but ending up knocking them over? Or perhaps you have been very drunk or needed to have powerful pain killers? You might remember how that feels? The clumsy disconnected feeling. All of these things will give you a small idea of what it feels like to have a neurological condition that disconnects you from your body. That affects your ability to control what you do. From fine motor control, to large motor control. For example: it could be problems with writing, picking things up, pressing a button. And/or problems with making your legs/arms move in a direction you want. Remember that all these problems can fluctuate in level/intensity minute by minute, hour by hour, day by day. Add into the mix extreme pain (neurological pain is different to muscle pain, much more severe and harder to treat) and the lack of feeling that comes from nerves not working, and you start to get a small glimpse of what it is like.

I did not write this blog to gain sympathy for me or others. I wrote it to gain understanding. Without knowledge, there is only ignorance. Ignorance of the plight of others brings about a lack of care and understanding. Most of us with neurological conditions have been where you are, diseases often hit later in life (not always, some are born with them.) This blog is to give you an insight into where we are and hopefully open eyes.

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