2012:1st yr of sat ‘n’ all that…

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,300 times in 2012. If it were a Dreamliner, it would take about 5 trips to carry that many people.

Click here to see the complete report.

Introduction to (my) faith, and disability

This is my response to the daily prompt for 29/12/12: “Tell us about the role faith plays in your life-or doesn’t”. This is a MASSIVE question for me. Hopefully even occasional readers of my blog realise my Christian faith is a major part of my life, right from the beginning of my days. However, it’s not just my parents faith, but my own personal faith.

In the beginning…

I believe that I am created by a Father God who crafted me and knit me together in my mother’s womb (Psalm 139) 13-15 I am made in His image, that is, I show some characteristics of God because he made me. I believe He is a God who does not make mistakes, therefore, he knew what he was doing when he made me. He knew more than that. “All the days of my life were written in His Book before one of them came to be” (Psalm 139:16 ) So if God knew what my life would be, did he create my disability, or did he just “allow it?” Is it just one of those things that ‘happens’? I have a lot of unanswered questions about why I have been through all that I have, not just having a disability, but being ill and unable to work as well, in pain the majority of the time and therefore requiring an electric wheelchair to get around, as well as all the normal ‘life’ stuff. (If you’d like to read more, see earlier post: Introduction to Illness and Disability).

Sometimes I have some answers, and sometimes I wonder why this, why then, when will this end? I won’t have answers to my questions until I am in Heaven. For now, however hard it is, I only see dimly. People have asked me before, how can I believe in God even though I have a disability? Well if I’m thinking straight, I think of it this way… How can I not? I have a constant reminder that by myself, on my own, I am weak, I need God to help me get through each day, to help me persevere through al that goes on. When I am weak, God is strong (2 Corinthians 12: 11).

What is this faith thing, anyway?

I believe that all the bad things I do, hurtful actions, sharp words, lustful thoughts and (all the rest!) are a barrier between me and a perfect God who cannot be contaminated by contact with my diseased soul, covered in grime from all the bad things I’ve done. However, because God loves everyone he has made, there had to be a sacrifice to make up for all the bad things I’ve done. Enter Jesus. It was while I was still a sinner, that Jesus died for me (2 Corinthians 12:10)

I believe that once Jesus grew up, when he was roughly 33 years old, he was an innocent man. who was tried and crucified for all the bad things I’ve done. He took the punishment I deserve and died in my place, bridging the gap between me and God, making me  God’s child, and He my Heavenly Father.  (see John 3: 16 and 17)  I’m fortunate to have an earthly father who I love and cherish  and a heavenly father who created me. loves me, and who sent his Son to die for me to bridge the gap. Because of what Jesus did for me on the cross, I want to honour him by mirroring him, doing what Jesus would do and therefore showing the world who Jesus is.

So, what does all this mean for me, personally?

This means choosing to do the right thing even when I’m tired or in pain…. not moaning or complaining (I still do though! ). I don’t do things on my own. Jesus helps me. There’s a verse in the bible I love which explain the connection between what I believe, and my disability. If you only look at us, (me) you might well miss the brightness. We carry this precious  Message around in the unadorned clay pots of our ordinary lives. That’s to prevent anyone from confusing God’s incomparable power with us. (1 Corinthians 4:7) . Basically  it’s God who powers me, who gives me the energy, I can’t do it by myself, but because God powers me, the credit goes to Him.

New Years Honours List: Unfailingly Controversial

A right, or a privilege?

It’s published twice a year, always with a fanfare. To some it’s an ‘exclusive club’ they have no wish to read about, or care who belongs to it, for others, they think they should be part of it and moan when they’re not granted access, or at least, the ‘honour they believe they’re entitled to. It it, and always has been something that has to be earned. Arguments could rage from now until kingdom come whether so-and-so has done enough to achieve their particular honours, or whether they should have been given more, or less.

Different, or Equal

Paralympians have been complaining they have to do more to be given the same titles as their non-disabled counterparts. or that they haven’t been given the title they deserve. I’m unsure how I feel about this. Perhaps it’s right that they raise the subject, otherwise others are unaware discrimination continues, or perhaps it just sounds like sour grapes. I guess I’m somewhat indifferent to it. For me, it’s just a fact of life that we, as disabled people have to fight harder to achieve the same recognition. However, looking at it slightly differently, the same could be said over and over again. We, as disabled people have to fight harder to survive, as babies. Our parents often had to fight hard to get diagnoses,  treatment, equipment, help, the list goes on. We have to fight harder to learn to walk, or to get around, however that is, we have to fight harder to achieve as school, because we could be behind our peers to begin with, whether that be physically, intellectually  or because we need more time off school for hospital appointments  illness, or treatment such as physiotherapy. I vouch for no two disabled people having the same opinion on whether they felt they had to fight for these things or not, or whether they felt ‘ordinary’; no different from their peers to begin with, and therefore starting from a level playing field to begin with. There’s an argument to be had as to whether we should be taken out of school for things like physiotherapy or whether it should be separate from school altogether. However, I digress. I’m trying to say, that although Pearson and Weir may have a valid argument, it might be the case that we as disabled people always have to fight harder for the same things, and as such is a fact of life.

An honour, or a right?

However, the other argument is that it could seen as bad manners to be complaining thus, seeing as it’s just that, ‘an honour’, something earned, not achieved, a fact which Dame Sarah Storey was quick to recognise. (though I now can’t find a clip of her saying it!). It’s also true that some Olympians have more recognition than others, and the same goes for Paralympians. I had no idea Para-equestrian wonder-woman Sophie Christiansen had been made an OBE, (alongside the better known Ellie Simmonds) until I started searching for news articles before I wrote this post.

Christiansen is a personal heroine of mine, has cerebral palsy and a first in maths, of all things. In para-equestrian terms, she competes in the grade I a classification, the ‘worst’ level of disability. Unable to keep her feet in irons due to constant spasms, it is fascinating to watch the ways she works with her horse. Even more incredible when you realise that every horse she competes with is on loan, but that she has the ability to get the best out of each horse she borrows. All the more remarkable she achieves what she does, and therefore, more deserving of her honours than those who can afford the horses, staff or equipment they need. I hope one day to be able to post that Christiansen has been made a dame, until then, I must be content that Paralympians are at now least achieving recognition for their achievements, even if it’s not quite on the same level as their peers.

ouch, that hurt!

This post is in answer to the daily post from 28/12/12. I LOVE books. I have several on the go at once. A few months ago I saved up vouchers and put them together to buy a Kindle 4; this model is the last of the simple ones. I love it! It makes it so much easier to have several books on the go at once, and still know where I’m at with them all. I did used to read a lot of romances, but these days they don’t have enough bite for me. I love a good autobiography to really get lost in someone else’s story, to feel what they feel and ‘walk in their shoes’. 

Recently though, I’ve been downloading different kinds of books. I saw a daily devotional book on the psalms at my friends house which looked good, so I downloaded that along with C.H. Spurgeon’s thoughts on the Psalms. It is worth persevering with the language, because some of what he has to say is extremely pertinent, just right for today, and can often make me think. 

Apart from that, there are a few others which have really made me think recently. One of those I do not wish to mention here. Others I am reading in preparation for my next article for Bible Reflections. That just leaves one more book, by Jerusha Clark called “Every Thought Captive” which encourages women to think about their thought life. It’s an odd thing, thinking about what you are thinking about, but a necessary part of discipleship, as previously discussed here, in my previous article for Bible Reflections. I started the book when I started thinking about that particular post, but it was something on my mind that I felt I had to do. It’s something I really struggle with. Also, I think it’s appropriate at the end of the year to take a bit of an inventory of the year gone. I’m not sure if I agree with setting arbitrary goals for the year ahead. However, I feel if I do not examine where I have been, how do I know where I’m going, and how do I learn from many) mistakes?  I’m really just at the start of this journey of considering my thought life, but one of the author’s opening thoughts really struck me:

Often it’s easier to believe that we’re worthless and weak than it is to truly accept that in God we are incomparably valuable and girded with matchless strength.

I’m still wondering why that is. I think it is to do with how hard it is to change our way of thinking. It is easier to worth with how we have always been than to make the effort to change. This particular thought has swirled round in my mind for weeks. I’ve been unable to move on. This has stung me again and again. There’ll be more thoughts on this book in the coming months. If you are starting to think about what you think, I’d really recommend it.


Three doors, one nightmare?

This Daily Prompt is the original inspiration for this post. It’s difficult for me to write, as I don’t normally remember my nightmares. I’m on such heavy medication that I have deep foggy sleep where I barely dream, nevermind have nightmares, so until recently, I didn’t know what they felt like. Anyway, here is my best shot…

The beginning…

There are three doors, all of equal width apart, and all the same shade of blue, which white numbers on the door. Which do I pick? I close my eyes, spin around, and stumble vaguely in the direction of the doors, entering the first one I find. Disabled people are begging in the streets, painfully thin and stinking. There is a person with a disability trying to go the wrong way through the Christmas Crowd. Pushing, pushing with all their might. I can see the effort they have to put in. They are pale, sweating and exhausted. I reach out to try to help, but they cannot see me. Yet I cannot take my eyes off their struggle. I wonder, where is their support worker, why such struggle on their own? People in the crowd tut and glare at the person, swearing under their breath at the persons stupidity in trying to fight the crowd. The do not see the person or their struggle, merely the incontinence. I stare, helpless to do anything.

Memory of struggle

Slowly, a memory comes back to me. I was that person fighting the crowds. Sweating and fighting to stay on my feet, determined to push on. I hear it, I cannot miss it. The person does not try to hide their contempt. They shout at me, swearing. Supposedly under their breath, but loud enough for me to hear. The memory is but that. Part of my nightmare… long enough ago not to remember the words, near enough to remember the swearing and the contempt. They, and the crowd, and the fight was the reason I finally gave in. I’d had enough. The next time I went to fight the crowds, I had a weapon. Not a very secret one, but a weapon. One capable of inflicting harm, nipping ankles and causing more trouble. I do not care, I am only relived that I do not have the same struggle, I have a new struggle but it is not the same nightmare as the old one.

Exploring my surroundings

The memory disappears as quickly as it came. I wonder, what else is there here? I do as the person with a disability I saw, and fight the crowds. They cannot see me, yet are aware of an inconvenience.  Irritation upon irritation. I find a shop, filed with food and good things. Freshly baked bread, warm from the oven. Cakes of all kinds, glistening icing, full of shiny fruit. Chocolate cake, dark and indulgent. Lovely fruit juice, something to quench my thirst. I feel in my pocket, searching for money. I find a few coins, not enough to buy anything. I find my wallet, go to a cash machine, reaching the buttons with difficulty. I check my balance. There is nothing. I wonder when I will have more, and with horror realize I have a few days of not eating, meaning a hospital visit for dehydration. My money for that month had gone. I wonder, how have I spent it? Perhaps on my mobile phone bill? My connection to people, to help, an antidote to the aching loneliness which sometimes haunted me. Or my food shop, supposed to be for food, but spent on washing powder, cleaning products. I could go on, but cannot bear it. I feel it afresh. Deep and Raw. So, what do I do? Join the other beggars, it’s them who shout the loudest, and yet no-one hears me, so no one gives me anything, I am invisible to them.

A Nightmare?

I wake up shivering and sweating, struggling for breath. The pain rises in my chest, breath is harder to find. Eventually the feeling passes, and I drift into a sleep which gives no rest, fighting and fighting till I lose the duvet. I am freezing, yet I do not wake. In the morning, I go to put on my trousers. I used to have help to this. I reach into the pocket, and find a few coins. This was no nightmare…


At the moment, this is just the stuff of nightmares. And yet, the present reality is bad enough. See my previous post. Who knows what will happen when “Universal Credit” comes in?


Two stories, one theme: survival

Dear Readers, if there should happen to be any of you left, once again I apologise for the lack of posts in recent weeks. For the moment, my need to sleep is greater than my need to write. Well, this is generally true. Fortunately, this morning at least, my need to write is greater than my need to sleep. This is somewhat concerning given I have an appointment at 9 am. (All attempts to request extra consideration within the unbending appointments system have gone unnoticed, so I continue to have to make my best superhero(ine) effort to make it anyway.


Talking of heroines, I’d like to draw your attention to the latest little fighter to make the headlines, a baby girl called Maddalena, born at 23 weeks weighing less than a pound. There are several things unusual about this mites story. Firstly,  that she was born at 23 weeks. This is significant given that threshold at which life is considered to be viable is 24 weeks, but this one was born at 23 wks and two days. When babies are this early and this small, every day counts, which is why being 5 days short of 24 weeks is worth reiterating. The second unusual thing about this story is that Maddalena ‘s story was introduced as a miracle of miracles, not only was she born at 23 weeks, and therefore considered ‘unviable’, but she was saved by a pair of scissors. At first this was puzzling, but it transpired, that a pair of scissors were found in the bag which contained the infants tiny body, so ‘experts’ thought she weighed more than she did. Apparently, according to the way this was reported, she owes her survival to this otherwise insignificant detail. Had the pair of scissors not been there, once again her life would not have been considered viable, as she would not have been considered able to survive and, more importantly, to support life, and a quality of life which would make the thousands spent on her medical care deemed to be a worthwhile expense. In these days of the NHS  having to justify every penny spent on patient care, (while wasting thousands of pounds in beurocracy!) this added weight is what gave her a chance at life, as presumably, doctors thought that if she was surviving at less than a pound, not including the weight of the scissors, she obviously is surviving for now, and is being given a chance.

Forgive me for bringing up the ‘religious’ thing once again, but in my opinion, no detail in this little ones life is insignificant, or unnoticed by her Heavenly Father, and her life was no accident, or mistake, whether her survival is considered viable or not. It is clear, at least to me, that God has a purpose for this little one, for it is He who is giving Maddalena her every breath, and He can use anything to thwart the expectations of the medical profession, even a pair of scissors. It seems for the moment, at least in what has been broadcast  that Maddalena does not have a disability as yet, unusual in one so small. However, as with all premature babies, her survival is still precarious, and due to her weight and how under-developed her immune system will be, her life could be wiped out by something as simple as a cold. For now, however, she survives. I intend to follow her progress.

Disabled people, discrimination, and the Paralympics

On the same day as this little child was born, there  are others fighting for their very survival. In a world where achievements such as the ability to find, and maintain a job, and indeed to be able to search for a job in the first place, and therefore not sponge off the state, is paramount, disabled people continue to fight. We are fighting for many different reasons. As in the case of Madelina, we are figthing to prove to prove our lives are ‘viable’ and have meaning and purpose, despite some in society, including, it seems, the majority of the goverment would seek to place on us.

As I suspected, the Paralympics have been judged to have had no lasting impact on the way ‘odinary’ disabled people living ordinary lives are viewed and treated by society at large. It seems the ‘Superhero’ label is all too relevant. Achieve heroic things, and you are considered an inspiration, and your life is considered worthwhile, for you are making a contribution to society by inspiring the rest of the nation to consider themselves lucky, amongst other things. It may be that view of disabled people in sport, and disabled people’s sport has changed, but as I suggested in a previous post some months ago, Lord Seb Coe was too quick to say attitudes towards disabled people had changed in any meaningful way. As is stated in the news item, According to this latest survey from Disability Charity ‘Scope’,

  • 53% said they still regularly experience discrimination
  • 67% said that the Paralympics have done nothing to improve the way they are spoken to

A high profile figure has come out in support of the survey, The Director of Public Prosecutions Keir Starmer QC has said in the article it is his “hope that [the Parlympics] has enhanced our understanding of people with disabilities, my fear is that the surveys continue to show a high level of abuse.”

While I applaud his courage in furthering the cause of little known “Disability Hate Crime” for some of us the fight is even more basic than this. Some of us are fighting for our survival  and the right to a basic income, food, heat, an (accessible) roof over our heads, for those who are able, meaningful work, to allow independent means of obtaining these things.

There are so many arguments it is difficult to keep track of them all. However, one of the arguments I have heard that shows a lack of basic understanding, (and an attitude that stinks to the Heavens) is that why should the taxpayer be funding disabled people to stay in their beds all day when others have to go out and work to obtain the same things others get for free. I have said from the beginning that in some ways I wish to distance myself from activism as we are only in part fighting for the same things. I do not wish to associate myself with much of the propaganda constantly churned out through social media, and consider the current fight regarding #ESA to be somewhat irrelevant considering that this will be dispensed with in a matter of months. For me, ‘Universal Credit’ is the more important fight, as there are rumours that the ‘premiums’ on which I depend will be wiped out. For now, this is but a rumour. Nothing is certain for now, although I fear the ‘devil (will be) in the detail’. For now, we survive, and fight on!


They’re special, my friends!

This is in answer to the daily prompt for today. Bit of challenge for me, this one…

friends linking arms

I suppose if you asked any group of people, most would say some of their friends are great. However, my friends are in a different league altogether. I feel very privileged to have as many friends as I do, from so many places, ages and stages, and with so many gifts and abilities. Not only that, but one or two have been there for years. Maybe there’s nothing unusual in still having a childhood friend, I have no idea.

Of the friends that live near me, I have friends I only see every 6 months, and we can pick up again as though it were yesterday. Others visit regularly, including one special lady who fills my medicine dispenser box every week. Some come for a drink, others for tea, and some even bring tea, or cake, or even cake that they’ve made. Now those are friends worth having! Others write, email or only phone occasionally. Some I have never met in person, including those through Facebook or Twitter, but I have a connection with them, especially those in a same-but-different ill and/or disabled situation because of mutual support and information sharing.

I love when I’m able to give  to my friends and not just receive. Those who’ve stuck by me. To me,  my friends go the extra mile, more often. I’m hardly ever able to meet them in town, or at their houses. I love relaxing over coffee or hot chocolate and a shared slice of cake! Though it’s exhausting, I also love days where it’s, one person comes into my flat as another one leaves. I love times like that because I love people in general, especially my friends, no matter how exhausting it gets or how much energy it costs. They’re worth it — every last one!

an epistolary blog post…

there's nothing quite like receiving a hand-written letter... but there's no love lost between Sleepy and Awake and Smiley...
there’s nothing quite like receiving a hand-written letter… but there’s no love lost between Sleepy and Awake and Smiley…

I’m laying aside the most awake part of myself where I post from the first person. I don’t always do that, as I sometimes link to news articles or features and write my opinions on them. Mostly though I tend to write about things that happen in my week, things that have happened in the past or things I think and feel. However, this week’s writing challenge is all to do with “shifting perspective  so I have chosen the intermediate level, to write letters from one part of myself to the other. All should become clear…

Dear Sleepy

Sometimes I like you. On those rare occasions when you show up at just the right time, and stay with me all night long, never stirring once. Then you leave, just as I’m fully refreshed and ready to face the world, round about once every month The rest of the time, you show up too often with your mates Pain-full and Migraine and I long to send u packing.

Today’s one of those middling days where I can just about cope, You sent me into dreamless sleep the minute the morning routine was over, and I only just woke up in time to get ready to go out to Social Enterprise. I stayed awake while I was there without even one yawn. Lots of giggles, stories and silliness, what’s not to love. Best of all, I got a shot on my favouite horse  For an added bonus I haven’t come home to find you’re vying for my attention.  I can feel you creeping up on me now. I am wondering when you will strike and just waiting for the crash. I’ve even eaten an extra slice of yummy sticky-sweet banana cake to keep you away (Shhh don’t tell the dietitian,she’ll be after me…)

may you stay away for a while

love awake and smiley.

Dear awake and smiley

What’s so great about being awake? Then you actually have to Do Things, and then you ignore me. Don’t worry, it will not be long before I come to torment you again. I love making you miss things. I steal whole chunks of time when you  need tobe doing Useful Things. And then when you do wake, you can’t get rid of me, because I’m still hanging around, ready to strike again at the first opportunity. I have the most fun when Pain-full and Migraine come along too. Three’s a crowd, and a crowd is enough people for a PAAARTY! Haven’t had one of those for  couple of weeks, maybe I should get planning…

I love showing up when you least expect me. I don’t like it when you plan cos it’s harder for me to show up then. I like surprises. I like those times when you just can’t rid of me, Over-time. Days and days of sleepy-ness, when I’m by your side no matter how hard you fight.

I’ve already got to you today. You were just up and ready, and then off you went back to bed. A whole hour and 15 minutes of dreamless slumber and half an hour of not-quite-awake. Now you’re wondering where I’m hiding and when I’m going to strike next. Bet you miss me…

Am off to plan that Party

love Sleepy

(P.S. would love to know what you think of this should you read it…!)