balm to my soul

“I just need you to listen,” I said.

He said, “I’ve said all I can say…”

I said, “I don’t need advice, I just need to talk…” A few minutes later, the quiet of an unburdened mind, now focused on being able to write. Rather than the restless disquiet of the last few days, draining me of all energy.

There are times I am the listener. Even when all energy is spent, I do my very best to take in what is being said. It is something I have had to practice in the last few years, There are still times I am good at interrupting people or coming out with advice, rather than really, truly listening, To listen, I have to sit still. I’ve practiced that too, I spend almost my whole day sat or laid still, save for spasms, so lots of time to practice being still. For now, the sweet relief of a still mind is balm to my soul. Still. and listening enough to write brings relief too. Finally, I can gather my thoughts long enough to dump them on the page. Oh, the sweet relief of finally writing again, brings balm to my soul!

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This post is part of five-minute Friday. This week’s prompt is ‘listen’. Leave me an encouraging comment about my post, then head over to Lisa-Jo’s website and have a go yourself!

Normal? No Thanks!

I wrote the following yesterday (Monday). I just got sick and didn’t post it, so here it is now…

Oh goodness. Yesterday’s daily prompt question is a rather pertinent one in a world where ‘abnormal’ is penalised, and ‘normal’ is praised. To be different in some way means you are not normal.

As a disabled person unable to work and reliant on medication, mobility aids, wheelchairs, and physical help from others on a day-to-day basis I am all too aware, I and my life, are far from normal. It is not ‘normal’ for someone as young as me to be unable to work. Medically, my body has never been normal. From the day I was born until the day I die, my body falls far short of ‘healthy’, and short of physical ability in day-to-day life. I am grateful I am healthier than I could be… though not as healthy as society thinks I should be. In these senses, I am not normal.

Who decides what is ‘normal’ though? This Government are penalising anyone who is sick, disabled, old, those looking for work or unable to work, poor, needy, or homeless. by labelling everyone in these categories as scroungers, and therefore somehow not trying hard enough to find work, or work that pays well enough to support a reasonable standard of living. It is ‘normal’ to be able to provide for your family, or pay your own way, in my case. It is normal to achieve certain grades in Education to go into education or training. Anyone who fails to do this is called a ‘NEET’ (Not in Education, Employment, or Training).  Anyone with requirements different to other children or teenagers has ‘special’ or ‘additional’ needs, and generally, their parents have to fight for every bit of help their child gets. If you would like to read more on this, I can recommend Jane Raca’s book, Standing up for James in which she writes of the struggle to find and finance adequate education provision for her son, and the failures of social services, especially if your family is going through similar struggles. (You can read my review of her book here). I did hear the other day that Katie Price’s request to begin a ‘free’ school with other parents of children with special needs had been rejected. Begun because there is not enough provision for children with complex needs, a claim also made by Jane Raca, though I cannot quote her directly unless I find my kindle before I publish this post!!

Personality wise, I have always been just the right side of daft. Life is more fun if you can laugh at yourself, and if you can handle tough situations with a degree of humour, it all helps, in my opinion. In this sense, ‘normal’ is boring. I would love to be more sensible and more organised though. In some ways I still feel as though I live and think as I did when I was a student, and in other ways I have grown up. I think that is a lot to do with not being able to work. In that sense, I am not ‘normal’, and here, I would wish to be. Spiritually, I tend to agree with the late, great, Mike Yaconelli. ‘Messy’ is best, and Jesus is right with us in the midst of it. I read a great post the other day to do with authenticity in church, and faith. I think I may have already linked to it in another post, but it is worth another mention. I definitely think Mike would have been the same in whatever sphere of life he was in at the time. People who can do that and get away with it are oftentimes, (though not always) my favourite kind of people because there is no ‘normal’, around them, and you never know what will happen next. Life is an adventure. I happen to agree. So did Jesus, who didn’t do ‘normal’ either. He hung out with the very people society shunned, when there was nothing to gain from doing so. Me? I prefer to aim to be like Jesus; life is more fun that way! “I have come that they may have life,and have it to the full” (John 10: 10)

Private? Not so much…

Padlock-q mark
Padlock-q mark (Photo credit: Wikipedia)

Today’s prompt is a difficult one for me. I would like to be private online and have a small digital footprint, but at the same time, my natural way is to be open and chatty, so I wonder, how do I manage this online, and with what consequences? Especially when the big companies (Facebook) sell my data to advertisers… not so private anymore, huh?! I read a post on the Big Bible website today which really made me think, and touched on one of my deep-seated, greatest fears:

 Anything we say online can be stored, captured and almost guaranteed to haunt us later.

If anything makes me wish to be incredibly discreet, there it is in black and white. Being a natural worrier makes this fear worse.I do like the practical suggestion in this post that we should type, or read twice what we have written before we share it online.

Talking of being careful what I share, I don’t want to change my relationship status on Facebook. as I don’t believe the mantra that ‘it’s not official till it’s on Facebook!! However, being a blogger who shares memoir type anecdotes and the like, I probably have shared a great deal online just through this very blog. I am ashamed to say, I don’t really know just how much about me and my life is ‘out there’.

There is a great deal stored about me on computer in general, given the state of my health. A few years ago, a computer in a hospital which may have contained some of my information was stolen. No matter how much security is in place, these things will happen.

And what about ‘identity fraud’? Surely the internet has made this far easier. I guess the more you share the more can be stolen increasing the greater the risk of this? You see, the list of potential worries is endless. It won’t stop me writing my blog. I do try to not ‘overshare’ in this blog about others involved in my life, such as my parents as it wouldn’t be fair. I try to protect their privacy though I am not necessarily good at protecting my own. I would welcome your thoughts on this!

Fall(s)? Leave it to the expert!!

Though I be only young, I consider myself an ‘old pro’ at some things, having experienced them over and over again: hospital appointments, meds, blood tests, ex-rays, scans, blood tests… and falls. My parents worked so hard to help me to walk. Dumping me on the floor as a wee one, and making me crawl to the towel. Plastic splints, special boots, crutches, zimmers, I’ve used them all. I’ve fallen on all kinds of surfaces: concrete. tarmac, orange tarmac, sand, bark… I’ve been picked off the floor by all kinds of people, and I myself am an expert! When I fall, I can do forward rolls, backward rolls, back flips, avoid obstacles by automatically throwing myself in the opposite direction. My brain has taught itself how to fall. Others have been in awe of me, many times. I think I’ve found my gold-medal winning sport…

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This post is part of five minute Friday! Leave me an encouraging comment, and then head over to Lisa-Jo’s site and have a go yourself!

 

Movie of the year?

Yesterday’s daily prompt caused me to look at it twice! I have often be told that my story would make a good book, or that I should write my story down one day. I guess I have done this in partial way as some of this blog includes memoir style material. As I know who I would love to play the lead, I would love my story to be a book and a movie. Carey Mulligan would be perfect to play the lead in the movie version of the book. Great actress who would draw in the punters, and who has played characters in movies belonging to the drama genre before, including but not limited to her role in the likes of An Education.

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This biopic certainly includes plenty of drama. More than one near death experience, disability, illness, life-saving operations, love, romance, faith, and miraculous scenes, including a couple of appearances from royalty…. There are also many supporting roles, with a great support cast. There is also potential for future movies given the relative youth of the protagonist… However, let’s focus on this particular movie for now.

Drawing of a film reel
Drawing of a film reel (Photo credit: Wikipedia)

It begins with my early life, with me being rushed to a special care baby unit, having been born 12 weeks premature at 28 weeks gestation, following an emergency birth. There is a touching scene early on, and the first of the miraculous moments, which shows the story of how I got my name. Some of the crucial scenes in my early life will keep you on the edge of your seat; including visits to resus, and touch-and-go operations where I was the smallest baby the surgeon had ever operated on.

My early childhood was no less dramatic, as my brain was starved of oxygen at some point before, during or after birth, resulting in a diagnosis of Cerebral Palsy. The diagnosis was certainly bleak, as it included intellectual delay as well as physical disability, and the extent of these was unknown at the time. Consequently, from a few months old until I was 3 or 4 I attended a centre for babies and children with special needs. Here i received input from a pediatrician specialising in Cerebral Palsy, physiotherapy, and specialist care. The next miraculous moment shown on film would be that I had progressed enough to be one of the first children with a disability in my region to attend a mainstream nursery. I would later meet 2 of those who had attended this nursery at secondary school!

Some time after this, there was a house move to Dunblane, where I attended nursery, and went to the same school that Andy Murray, tennis player extraordinaire would later attend!! In my first two years at primary school I had a full time assistant with me due to my level of need. When I was six, we moved back to Aberdeen.

In some respects, my primary school life was largely uneventful when compared to the events of my early life, so this would play no part in the review, though would occupy a few scenes in the movie. Miraculously, I caught up intellectually, and when I was 11, had no further need of the assistant who was with me for four years, as I was able to continue primary school on my own. This caused a ruckus at the time. Secondary school too would play no major part in the movie. There was a house move at age 14, where I stayed until I moved to central Scotland to begin my first degree in 2001. It was here I would meet some of the friends I still have today, and where I would meet my current ‘Special Someone’… though a little more of that later!

The move to university was one of 5 days which changed my life forever, and the events of these 5 days, or even periods of my life, would be the focus of the major part of the movie focusing on my adult life. The only exception to this would include a scene with my childhood ‘adult baptism’, in which I explain why Jesus became the central focus of my life, (or certainly should have been!!) from then on. The next part of the movie would include university days, which showed the beginning of adult illness.

Further scenes became more dramatic, including a move across the border, a life-saving operation, the scene in which I was told I would now require an electric wheelchair full time, and the scene in which I was told I had no choice but to have the ‘care’ I had tried to avoid from age 22 when other disabled friends begin to suggest it, Other scenes include a couple of romances, one on/off romance with a childhood best friend, and another with a former Paralympian!

The movie ended with an update to the present day, showing some of the complexities of life as a wheelchair user who needs help with the basics of life, but has a stellar supporting cast, including the events which explain the introduction of ‘Special Someone’, and the reliance on faith to survive, and thrive through every day, eventful or not. The movie therefore fits the ‘Christian biography’ category, but is far less cliched than some representations of the genre!!

To be continued…

Best left alone?

I did mean to respond to yesterday’s daily prompt but needed some thinking time. I’ve not really thought of myself as a ‘niche’ blogger, as I often write about some of the same things as others, but offer something new on the subject. By answering so many ‘daily prompts’, I try to vary what I write as much as possible, though there are some subjects I write about more often than others. You need only look at the ‘tag cloud’ on the right to see what, but off the top of my head… disability, faith, and relationships are the topics I think of first.

There are, however, some things I just won’t touch. There are current debates in church, politics, and society that I don’t know enough about to write about them, either in head knowledge or experience, and there are others answering those already, such as the current controversy about the definition of marriage, aspects of theology, apart from what relates to my faith and also that which helps me make sense of my disability, and life in general. I can’t think of  other specific subjects for now. 

The other reason for not being too controversial or writing on some of the topics of the day, is I can’t start confrontation and got myself into ‘hot whatter’ recently, something I’ve already written about this week. It may seem weak, and the time may come when I feel I know enough about something to add to the debate. I think I have already written about the welfare state, and there is a petition floating about I agree very strongly with, which demonstrates just how hard the cuts are hitting others in a similar position to me, which other people will say there just isn’t the money for. Everyone has an opinion on the cuts. On the economics behind it, however, I am woefully ignorant I guess I have found one of my ‘never’ topics after all…

Another Tablet?! No thanks…

Yesterday’s daily prompt is a simple question:

If you could get all the nutrition you needed in a day with a pill — no worrying about what to eat, no food preparation — would you do it?

Answer: NO!!

Here’s why…

  1. For starters, I take so many pills anyway that I wouldn’t want to take any more unless strictly necessary.
  2. I PROPER LOVE my food. I love choosing it, unless excessively tired, I love eating it, and I often love preparing it, again depending on how tired I am.
  3. I would miss the taste of so many things; melting chocolate, freshly baked bread, toast dripping with melting butter, roast chicken, garlic bread, most forms of desert I can think of. I could go on…!
  4. I would miss the occasion of a meal out, or a meal someone else has cooked for me as everything tastes better when you didn’t have to cook it yourself!
  5. Some years ago, I had to have a huge operation, before which the surgeon and his team were considering inserting a feeding tube as they didn’t know if i would be able to cope with food. Having had to consider it, and avoiding it, I never want to take food for granted again.
  6. I can see that, for busy people, an option of a meal replacement tablet might be highly desirable as it would optimise the rest of their time. Perhaps something like that is possible in my life-time. However, for me, it would take a way a significant part of my life. I do a lot of my socialising with coffee and a biscuit or a slice of cake in front of me, with two forks, so myself and a friend can have half each. Somehow it doesn’t feel quite so fattening that way!

Over to you:

If you could take a meal-replacement tablet, would you do it? If so, why, or why not?