how long have I got?!

Oh my goodness, today’s been one of those days where I haven’t got off my soap box. Spent lunchtime with a new friend waxing lyrical about the state of some parts of the Kirk and the Church, north and south, and how things can be a bad witness and all that… and about the different paths we’re walking and wheeling and where God is in it all, and before that I was on my soapbox about how various MPs, and job-seekers should spend a day with me or one of my wheelchair using friends, cos they’d soon realise the error of their ways, (that’s the hope/dream/delusion!!) 

I got home, and saw yesterday’s daily prompt and my first thought was, it’s one of the ‘I could write nothing, something, or Hundreds of words on!! 

Helplessness: that dull, sick feeling of not being the one at the reins. When did you last feel like that –- and what did you do about it?

The kind of helplessness I often feel is something I am kind of stuck with as in there’s nothing I can do with it, or about it, except learn to live with it and allow it to help mature me. I’m helpless without my six-month old phone, which has just died and death, and I can’t do anything about till Thursday  I was helpless last when uncomfotable with spasms and pain, and no re-positioning the bed would help, until I was so tired, I didnt hear the intercom at all this morning. Fortunately two friends were staying overnight and one of them let the carer in! I often feel helpless about my singleness, as I wrote a day or two ago. So far, I have no control over my singleness, my pain levels, my spasms, my mobile phone; I’d love to work, but don’t have a choice about that either, as I’m just too medial complicated at the moment, and off to kip as soon as this post is done. Though I may have my sixth cup of caffeine today and soldier on! 

So, as there are so many things I feel helpless over, or not it control of, when I can stay calm, how do I do it?? well, as you can see, I love to talk, verbally or in  writing, but the main thing that helps? I remember my Lord Jesus, helpless twice, once as a wee baby, and again on the cross, and all that was for me.  

I also find things to give thanks for, for there are many of those! A saviour who loves me, and who died for me in order than my sin may not be barrier, so that I might be his. A working, customised wheelchair. Healthcare free at the point of need. Food, to the point where I had to make a resolution to lose weight, my friends, and my family. I’m sure there are more. See, starting to feel better already!

friends, family and favourites

oooh, this is awkward…

Today’s daily post is an awkward question to answer, as I don’t actually have a favourite person, if we’re talking ‘significant other’ as it were. I talked this over with a friend, and they say said, why didn’t I immediately say Jesus was my favourite person?  True enough, that’s what I should have said. As a Christian, I should  put Jesus first, before anyone or anything, my first love. Time I walk away is still harder than time with Him. I can answer the question a different way…

Jesus should be ‘my favourite’?

 

I know, looking back He’s enabled me to me walk through so many difficulties in the past few years. Things I’ve already written about, including failing my teaching degree, being ill and trying to pass a Master’s degree. Add to that, complicated major surgery, becoming a full-time wheelchair user, starting to need carers two-three times a day, and managing The Bag. There’s no way I’d still here without Him and I know He’s there for me every moment of every day, and in the happy moments too. In these times I’m reminded I am to rejoice in everything, and have joy even in the tough times. I’m still learning those things!

As I’ve written before, many of my friends are my favourite people, along with my parents. I still feel quite dependent on them, really. Odd, considering I live independently, and for the most part, have done since 2001,  That said, I owe everything to them, for lots of reasons, and often miss them. My Gran’s another favourite person as we’re quite close, and she’s a kind of mentor to me.

 

waiting

 

Maybe, just maybe

who else? Well… I haven’t met them yet, and they haven’t met me. That is. if there is someone, or if God has something else, something he considers better for me. These things aren’t easy to write. Traditionally, there’s a focus on family, in churches, and usually, Christians who hold similar views to me marry young. My parents try to encourage me with anecdotes of women they know who are older than me and still faithfully waiting for the person God has for them, and if they do not show up, they will not settle for less. Oh how I admire their discipline. I know I don’t want to compromise  but sometimes the temptation is great.

which is ‘better’; single or married?

 

According to some friends I’m good at being perceptive about people in their lives, but by my admission, sometimes hopeless with my own. I’m also aware, if I marry the wrong person, being with them, and coping with all my health problems would be hell. It feels like so much pressure sometimes, and a bit of a relief to stay single. Other times, I’d like the someone special… especially when I look at friends who have found ‘the one’ but at the same time, it hits me that I should keep waiting because it might be worth it eventually. I’m hyper-aware of the tendency to ‘over-share’… enough now.

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.

The Art of Compassion

The Art of Compassion This is the link to my very first article for Bible Reflections,oh the excitement! I have written the article from my experience of being there for others in need, what God is teaching me through it, and what the Bible has to say about how to love people who are hurting.. This […]

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A beautiful way…

I didn’t have any trouble thinking of a title for today’s daily post. It is something I have often heard talked about in interviews on TV; sometimes the presenters ask the interviewees what they’re favorite songs are, or which songs have inspired them, in the case of musical artists. Today’s challenge was to think of a song and use it as the title for a post.

To anyone who has met me, or read even a couple of my posts, I think it will be easy to understand why I picked this song. At the risk of making this post too ‘Jesus-i-fied’ it’s about being so full of joy and strength that personal circumstances become unimportant, priorities change, and the person has a Godly character. It makes me think of a few different Bible verses too, but particularly this one…

We now have this light shining in our hearts,[Jesus] but we ourselves are like fragile clay jars containing this great treasure. This makes it clear that our great power is from God, not from ourselves. [because we couldn’t do it in our own strength]. 2 Corinthians 4: 7 

The other, shorter one which is a bit easier to understand is this:

So whether you eat or drink, or whatever you do, do it all for the glory of God. 1 Corinthians 1:31

Putting it in a simpler way, it’s like being able to not talk about personal things and just got on with living a full life. Its something I’m still aiming for…

“beautiful Way” by All Star United

‘Dave’s’ speech (2)

This is the second of two posts on two David Cameron’s Closing speech to the Consevative Party Conference delegates. The first is concerned with Cameron’s take the Paralympics, and people’s view of disability. In his speech Cameron also talked about something called “Compassionate Conservatism” and said that they were providing for vulnerable people.

Sorry ‘Dave’ but you don’t have a clue mate!

What does ‘Compassionate’ Conservatism actually mean? Is it just to make them sound better? From where I’m sitting there’s not a lot of compassion. Yes, Dave, I understand that you think you understand, but having one disabled child does not mean you understand what it’s like to live day my day with a long-term illness or disability. I’ve had a disability for almost 30 years, and been ill for at least the last 10, and there’s so much I don’t yet know about disability. For example, I couldn’t pretend to know what it’s like to live with even a moderate learning disability. Also, when Ivan was alive, the Cameron’s won’t have been at the mercy of the complexities of the welfare state. Most problems are easier if you have money to chuck to chuck at it, including the provision of high quality specialist care.

As far as I can tell, the conservatives have this idea in their heads that they are providing for those in ‘genuine need’ and so being compassionate, while encouraging everyone else, to get a job, which they think is best, as work, rather than benefits pay, and so they are being compassionate. The reality is that it is not just the Ivan’s of this world who are unable to work. It is quite right that people who have his level of disability should be given the very best, but can the country afford it? There is a complex mixture of people who are unable to work, but the benefits system is too inflexible to recognise this. As a dear friend said recently, it is impossible to compare two people, even those with the ‘same’ condition/impairment, or a ‘similar’ level of disability, but for the purposes of doling out finite resources, there needs to be a way found of comparing people with money being distributed as fairly as possible. Yes, an absolute minefield!

Even where one does qualify for what is called the ‘support’ group of Employment and Support Allowance (ESA) as I do, the form is a peculiarity in itself, as it is designed to trip people up, and the system is designed to recognise specific words and phrases as being associate with corresponding levels of need, and so it is best for the claimant if they fill in the form with someone beside them who knows what these specific words and phrases are and who can arrange the wording accordingly. I have been filling in forms for government since I was 18, and even with two degrees, I required the help of a friend who hold a senior position at a local social enterprise to be able to fill the form in correctly. My friend asked me for absolutely minute detail. For example, where was the pain, how long does it last, how often does it occur, how severe is it. which tablets help, and how much of the pain do the tablets take away. What are the side effects I suffer from of the pain relieving medication, and how does one medicine interact with the other. We had to do this for every place I have pain. When writing about how the fatigue affects me day to day we had to write in similar detail, for example, how often does it confine me to bed; how often does it limit my level of activity, and in what way? What impact did this have on my mental wellbeing. It was the same with the problems with my ileostomy bag, other medical ailments, how my cerebral palsy affects my mobility, dexterity, how my independence has been gradually chipped away… and the rest! We ended up with at least three double-sided blank pages of closely written extra information. The whole exercise took the best part of three hours, and left me utterly exhausted. When my friend left, I took to my bed for the rest of the day!

The form also required me to list every professional I see, and at the time I think I had a list of about fourteen! Every time I lose one, there is usually another to replace them! Not only this, but all the names and address and phone numbers of each of the team of people. It was the same for each subsequent question; so much was required. Even then, I was at the mercy of someone reading all this information who was able to process it all and understand the impact of everything on my daily life, and which group this placed me in. Obviously as a Christian, I prayed before the form was posted that such a person who be the one to assess my level of need. You might think that all this effort may entitle me to support for at least a year or two…. wrong!!

Compassion?! What Compassion?

Every time the benefits system is altered I am at its mercy. There are new forms to fill in, new benchmarks for the different levels of need, and fresh understanding required to fill in each form. To be constantly required to use my precious limited energy on all of this is, for me, a hallmark of a lack of compassion, and also, a pointless exercise, as it means telling the Job centre or Department for Work and Pensions, who they already ought to know. I understand that they have to know who is in need tobe able to determine who is not, but it is not as simple as this, and therefore, one system does not fit all… therefore even the very words universal Credit strikes fear in my heart. As I have described in some detail, it is hardly possible for one system fit all, as each individual’s level of need varies, and yet to “make work pay” it has been deemed necessary to lump those who are not working together. From next April, the reassessment fun will begin again, twice over, for “Universal Credit” and for the new Personal Independence Payment (PIP) which replaces Disability Living Allowance (DLA).

Every time the system changes, so does my income as I am entirely dependent on the state. Obviously as a Christian who attempts to live out her faith on a daily basis, I know, and have to trust my heavenly Father that he knows what I need and will provide. This week, I lead a bible study focusing on the first four chapters of the book of Esther. This book is about a women who battled with her circumstances, and won, with the help of her God. An appropriate study for me to lead, as it turned out, because the opening question asked which factors in each of our lives we out with our control, and how did it affect us. Of course, the natural answer for me, aside from my illness and disabilities (impairments) is my level of income. This was something of an eye opener for the group, who being caring people began to feel sorry for me as say things like “but surely this does not affect you?” the assumption being that I would quality for support with ease, and so not have anything to worry about. Once I explained, however, that the system changed regularly, and with it my level of income, they understood that this was indeed something out with my control, and therefore something I had to trust the Lord with. They had compassion.

The One with the MP

A number of months ago, as the forthcoming changes were being first discussed, I was, naturally unsure what the changes would mean for me personally. One Saturday, as I was in my local supermarket, I noticed my MP was holding a surgery, so I duly waited in line. My MP listen intently to my story and my questions, as an intern or assistant took notices, and tried to understand my situation. He assured me, as Liberal Democrat, that he was prepared to stand up for sick and disabled people in his constituency, and he would be seeking assurances from his colleagues in Government, that people like me with a genuine need would be provided for. As promised, he wrote to the then Minister for Disabled People, Maria Miller, seeking assurances to that effect. Ms Miller’s answer to my MP was a clearly photocopied stock answer which parroted out the propaganda now associate with this Conservative government, that the forthcoming changes with necessary in order to encourage disabled people, of which I was one, into work, with no acknowledgement that there would be those who could not work, however much they might like to. One had compassion, the other did not. I will leave it to you, to decide which!

What does the Bible say about ‘Compassion?

There are many reasons for the current Government’s lack of compassion, some of which I have outlined above, and partly springs from a lack of understanding and from not knowing the everyday reality of life for someone like me. However, their very understanding of ‘compassion’ may be questioned. In his speech. Cameron was talking about a type of compassion, compassionate conservatism. Surely if they were truly compassionate this would be apparent in every policy this government introduced. however, as I have explained, I am doubtful that the current Government even understands what ‘compassion’ is. I am privileged to know One who does know what compassion means, and that’s the Lord Jesus. There are many scriptures I could quote here, but the one that came to mind first was when Jesus fed the five thousand.

Jesus called his disciples to him and said, “I have compassion for these people; they have already been with me three days and have nothing to eat. I do not want to send them away hungry, or they may collapse on the way. (Mathew 15:32 NIV)

Here, Jesus saw a need he could meet, and dud so, out of the abundance of his love for the people. It may sound obvious, but hungry people need food, In this country, there are people going hungry who do not have food. One example of an organisation trying to meet these needs is the Trussell Trust, who say “Rising costs of food and fuel combined with static income, high unemployment and changes to benefits are causing more and more people to come to foodbanks for help.”If the Government is compassionate, why are people going hungry? To me, this is yet another illustration that they do not know the extent of the need in their own country.

A word of encouragement…

Noticeable through absence!…

As yet, as far as I remember, I haven’t yet blogged specifically about my faith, or faith in general. There are couple of notable exceptions such as when I blogged about my “health story” and referred to the way God has sustained me and been my strength. The other time is when I highlighted the plight of Rimsha, the girl in Pakistan who has been persecuted for her faith. I encourage you to continue to pray for her, and visit the website for “Open Doors” for updates. 

The Jesus bit

I read something yesterday which I would like to share. I use some Bible Reading notes published by the Good book company, called “Explore”. Yesterday, the main passage was from Luke 23: 2-12, talking about how Innocent Jesus was, and is. Especially in comparison to us, Obviously it was His Innocence that made him sinless, and therefore eligible to be the sacrificial Lamb on our behalf to atone for our sins. This is something we ought to take time to thank Jesus for. This also means that because of Jesus sinless-ness, and his sacrifice, we can be cleansed form our sin, and are made clean, and new. As new creations, we are given new garments to wear. Galatians 3 26-27. I am reminded of how good new clothes feel, especially if they are posh new clothes. They make me feel good, look good and I don’t want to do anything to spoil them so I try my hardest not to spill anything on them or soil them in any way. It should be the same with the “new clothes” Jesus  gives us. We should be determined not to do anything to dirty them in any way. This means that as well as turning from old sins, our thought-lives should also be renewed. “transformed, by the renewing of our minds”. This means you (and me!) should “set your hearts on things above, where Christ is, seated at the right hand of God. Set your minds on things above, not on earthly things. (Colossians 3:1-2, also see v 3 and 4). What are the ‘things above’ we should be thinking of?

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. (Philippians 4:8)

 

What a challenge! Fortunately we do not have to do these things in our own strength with with His help and by His power. I hope these verses encourage you as you go through your day today.