I've been frequenting various author/writing blogs lately in my novel-writing mission, but have found that I feel fairly depressed after browsing too many of them. Now this could merely be due to the fact that they actually procrastinate the very thing they advocate, ie actual, real Writing. Or, it could be something more, something whch seems to strike at the heart of me.
These blogs are exhausting. All written by successful people with twenty zillion followers and thousands of perfect widgets proclaiming their great accomplishments; top ten bloggers ever, fifty books published, their perfect life of writing. Then, across their headers, there's more evidence of their triumphs in this brutal market - their international speaking schedule, their competition wins, their Goodreads page along with endorsements from Famous Folk. They've arrived.
And they tell us that we must do similar, if we want to succeed in any way with our writing. We must spend every waking minute gathering and coddling our millions of Twitter fans, and if we have under five thousand then we might as well give up, because our book just won't sell. Not only that, but we must build platforms on Google Plus, Instagram, Goodreads, Youtube, Facebook and everywhere else it is possible to build a social media presence. And then there's our blog. It must be good. It must be professional, and it must show evidence of our faithful followers.
My heart shrinks a little inside when I read these, because I know this is just beyond me, beyond my capabilities, physically. When it comes to social media self-promotion, I am Unproductive. It seems to me that society requires so much productivity of a person in order to be successful - or in order to be in any way deserving of anything at all, possibly. Those in society who are seen as Unproductive are banded together and shoved to one side; the Undeserving. When it comes to matters such as welfare, sections of the media like to play up the unproductivity of the undeserving - they have not tried, thus it is their fault, thus they are undeserving. Why should we help such people?
Sadly, this tends to enclose many people who are sick and disabled, and to society's eyes may be unproductive. Somehow, society have twisted things here so we see the most needy, the most sick as deserving and somehow heroic, but the long term sick, especially those with fluctuating conditions, are often seen as the opposite to this. They just don't try hard enough. Remember all the stuff going around about the Paralympians - they're disabled but they have tried. They are Deserving. But you haven't. Why not?
The truth is, being long term sick is completely exhausting in a way that is hard to explain. It's not like tiredness, more like a constant flu like feeling, taking over your life. That's why when I look at the requirements it seems it is needed to be an author, I want to close my laptop and wipe the lot. I can't do this, because my body isn't strong enough. Sitting at a computer all day blogging and tweeting may not seem a huge burden, but to someone with long term sickness I can promise that it is a burden much too far. On a bad day, I cannot open my computer. On a less bad day, I can read a bit of Facebook. On a slightly better day I can manage the odd blog post or some work on my books. On my best days I can do a lot more of this, and sometimes catch glimpses into what life might look like if it could always be like this. But because my condition is annoyingly fluctuating, I cannot be consistent. I cannot give this kind of commitment to something. Does that mean it's impossible for me to do this? I'm also grateful for the fluctuating nature of it, because it means I get time off, or at least down time where I feel well. Ish. It's good.
People who are long term ill are not undeserving. In general, they are just beyond shattered. They are trying to live day to day, trying their best to get through, to accomplish the smallest of tasks, and to cope. To then be faced with the media casting these kind of aspersions on them could be the straw that breaks the camel's back for them. I plead with our government, with our media to remember everyone has a story, everyone has humanity. Everyone is valued, not for what they do, but who they are. I'd include those who are seen as undeserving but aren't necessarily physically ill in this. They have a story. They are people. I believe they are made in God's image, and I believe in grace, not only rewarding the deserving. I'd love to see a world where grace shone through. Another subject for another time, perhaps.
Meanwhile, I may as well keep chasing the book thing. It's a bit Rejection City round here though, so I may just sit and mope instead.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, 1 October 2015
Monday, 31 August 2015
If they won't I will
There's a lot going about on Twitter at the moment about the death figures for those claiming ESA in the past five years. It makes for some fairly scary reading. It's prompted a UN inquiry into grave and systematic violations of disabled people’s rights
I'm just completing an edit on my first novel. I've been a bit reticent about sharing it with people, because it feels all vulnerable to get out there and say 'I've written a book.' But the book speaks of my fears of what a society might look like if this kind of thing was taken to the extremes - if violations of rights were taken much, much further than even this report warns. It's a YA story set in a dystopian version of England. There. I said it. I'm not saying a lot more, as I'm in the process of sending queries to agentsand waiting for the inevitable knock backs. I'll tell you more when I self-publish it on Kindle :)
I know my story, and others like it, are glimpses into something that couldn't possibly happen. Well, I hope they are. Remember the Nazis? Stalin? Mao? It doesn't take much to look around and see that humanity really can be capable of the worst of atrocities. We can look around at our fairly moderate country, and say 'don't be daft. Nothing like that could happen here,' but I wonder if it could, actually, and I wonder if some of these stories about folks dying after being found fit for work could point to the fact that we are going downhill. I'm not one to go in for hysteria or accuse IDS of longing for the Workhouse society, (some days), but we do need to respond as a society to these figures and what they mean - it's unclear, as yet. My book reflects my experience of how the weak and the vulnerable are sometimes treated, but I'd hope that as a society we would be making better choices about how we care for those who most need it.
Psalm 82:3
I'm just completing an edit on my first novel. I've been a bit reticent about sharing it with people, because it feels all vulnerable to get out there and say 'I've written a book.' But the book speaks of my fears of what a society might look like if this kind of thing was taken to the extremes - if violations of rights were taken much, much further than even this report warns. It's a YA story set in a dystopian version of England. There. I said it. I'm not saying a lot more, as I'm in the process of sending queries to agents
I know my story, and others like it, are glimpses into something that couldn't possibly happen. Well, I hope they are. Remember the Nazis? Stalin? Mao? It doesn't take much to look around and see that humanity really can be capable of the worst of atrocities. We can look around at our fairly moderate country, and say 'don't be daft. Nothing like that could happen here,' but I wonder if it could, actually, and I wonder if some of these stories about folks dying after being found fit for work could point to the fact that we are going downhill. I'm not one to go in for hysteria or accuse IDS of longing for the Workhouse society, (some days), but we do need to respond as a society to these figures and what they mean - it's unclear, as yet. My book reflects my experience of how the weak and the vulnerable are sometimes treated, but I'd hope that as a society we would be making better choices about how we care for those who most need it.
Psalm 82:3
Defend the weak and the fatherless; uphold the cause of the poor and the oppressed.
I say, #iftheywontIwill
I hope that this investigation will be a trigger to something new, something good, where people in Government really listen to those struggling with sickness and disability, where voices are heard at last and where the weak are upheld and defended in our land. That's what I dream of. I need to ask myself how I can help make that happen. Retweeting stuff on Twitter isn't enough, is it? What can we do to really mean this? Praying is incredibly important, I believe, but prayer without action is not enough.
What am I doing? What are you doing?
Saturday, 1 September 2012
Paralympics Meanderings
How fabulous are the Paralympics?
I love seeing how the athletes have worked so hard and triumphed over such adversity. They are inspirational. It's quite staggering to see how far some of them have come in their lives and their sport. And - well, they're fantastic athletes.
However, there is something of a backlash amongst the disabled and chronically sick community, especially as regards to one of the Paralympic sponsors, Atos Healthcare. One has to wonder why a company that has a £112 million contract to assess sick and disabled people for DLA and ESA, yet costs the taxpayer £60 million in appeals against decisions, 40% of which are successful, have been allowed to sponsor such an event. Especially considering the fact that many of the athletes making up TeamGB will have relied on Disability Living Allowance throughout their lives in order to do what they have done and become the athletes they have succeeded in becoming.
DLA is not an out of work benefit, it is a benefit helping disabled people to live lives with some possibility of fulness, not to mention to keep them alive. Disabled and chronically sick people need extra money just to keep existing with their disabilities. Transport, heating, technical aids, carers. The list goes on. And yet Atos have been tasked with assessing people on this benefit - even those given a lifelong award, with doctors' support - with the end view of reducing it by 20%. Even though fraud rate has been assessed at around 0.5%. Figures don't add up? Go figure....
I'll post a video explaining it more, for those who are interested. This video explains Atos' role more clearly, against the backdrop of a protest by disabled people that took place yesterday.
Equally concerning me in all this, and running throughout it, is the attitudes being fostered towards sick and disabled people. While it's great to comment on how the athletes have come through difficult situations and achieved incredible goals, there is an underlying rhetoric taking place which fits nicely with Atos' seeming aims. Basically, that disabled people can achieve such things, so if you're not, you're not trying hard enough. You're so much use, you're a scrounger, because you haven't given it your all, like these people, you haven't triumphed over your own personal adversity. You're sick: So what? So are they!
It's a worrying trend which is intensifying through society, from welfare cuts to newspaper articles. But think about it. You wouldn't think this about an able bodied, healthy person, that because they weren't running like Mo Farah they weren't trying hard enough? It's scary when you feel judged on being ill and judged even more on not trying hard enough to not be ill. Or to be fabulous anyway, within your illness.
I sometimes wonder if this attitude is somewhat prevalent in the church, too. The whole 'pull up your socks and get on with it' thing. Amidst praising the triumphant, we need to remember those who, for whatever reason, simply cannot triumph, or at least triumph in the way we may want them to. Remember those who are too sick to work, and even too sick to go out, and who are stuck there, and no amount of talking up what people 'can' do as opposed to 'cannot' will help them be able to. It also leads into the whole area of usefulness and uselessness. Seeing reports of such bravery can be very inspirational and can encourage someone to go for it; but we need to remember that for some it simply feeds into their own sense of uselessness. I will never be able to do something like this, I will never be able to work, I will never be able to contribute. I am useless.
I've had times of thinking like this (still do, on a fairly regular basis) and know how it is to be trapped in a body that simply won't. Simply won't ever be a body of an athlete, whatever I do, however hard I try. It's not possible for me. But does that make me of lesser worth than the athlete? Society is at risk of beginning to categorise sick and disabled people: Those who can, those who can't, those who won't, those who are worthless. Does church do that too?
I know someone who doesn't....
I love seeing how the athletes have worked so hard and triumphed over such adversity. They are inspirational. It's quite staggering to see how far some of them have come in their lives and their sport. And - well, they're fantastic athletes.
However, there is something of a backlash amongst the disabled and chronically sick community, especially as regards to one of the Paralympic sponsors, Atos Healthcare. One has to wonder why a company that has a £112 million contract to assess sick and disabled people for DLA and ESA, yet costs the taxpayer £60 million in appeals against decisions, 40% of which are successful, have been allowed to sponsor such an event. Especially considering the fact that many of the athletes making up TeamGB will have relied on Disability Living Allowance throughout their lives in order to do what they have done and become the athletes they have succeeded in becoming.
DLA is not an out of work benefit, it is a benefit helping disabled people to live lives with some possibility of fulness, not to mention to keep them alive. Disabled and chronically sick people need extra money just to keep existing with their disabilities. Transport, heating, technical aids, carers. The list goes on. And yet Atos have been tasked with assessing people on this benefit - even those given a lifelong award, with doctors' support - with the end view of reducing it by 20%. Even though fraud rate has been assessed at around 0.5%. Figures don't add up? Go figure....
I'll post a video explaining it more, for those who are interested. This video explains Atos' role more clearly, against the backdrop of a protest by disabled people that took place yesterday.
Equally concerning me in all this, and running throughout it, is the attitudes being fostered towards sick and disabled people. While it's great to comment on how the athletes have come through difficult situations and achieved incredible goals, there is an underlying rhetoric taking place which fits nicely with Atos' seeming aims. Basically, that disabled people can achieve such things, so if you're not, you're not trying hard enough. You're so much use, you're a scrounger, because you haven't given it your all, like these people, you haven't triumphed over your own personal adversity. You're sick: So what? So are they!
It's a worrying trend which is intensifying through society, from welfare cuts to newspaper articles. But think about it. You wouldn't think this about an able bodied, healthy person, that because they weren't running like Mo Farah they weren't trying hard enough? It's scary when you feel judged on being ill and judged even more on not trying hard enough to not be ill. Or to be fabulous anyway, within your illness.
I sometimes wonder if this attitude is somewhat prevalent in the church, too. The whole 'pull up your socks and get on with it' thing. Amidst praising the triumphant, we need to remember those who, for whatever reason, simply cannot triumph, or at least triumph in the way we may want them to. Remember those who are too sick to work, and even too sick to go out, and who are stuck there, and no amount of talking up what people 'can' do as opposed to 'cannot' will help them be able to. It also leads into the whole area of usefulness and uselessness. Seeing reports of such bravery can be very inspirational and can encourage someone to go for it; but we need to remember that for some it simply feeds into their own sense of uselessness. I will never be able to do something like this, I will never be able to work, I will never be able to contribute. I am useless.
I've had times of thinking like this (still do, on a fairly regular basis) and know how it is to be trapped in a body that simply won't. Simply won't ever be a body of an athlete, whatever I do, however hard I try. It's not possible for me. But does that make me of lesser worth than the athlete? Society is at risk of beginning to categorise sick and disabled people: Those who can, those who can't, those who won't, those who are worthless. Does church do that too?
I know someone who doesn't....
Saturday, 18 February 2012
Those who 'just get on with it'...
So, this phrase has been vexing me somewhat lately. I'm not entirely sure why, but here's the thing:
'<insert name here> is so inspirational, you know. She is one of those people who just get on with it, you know, even when she has proper flu. She doesn't let it get her down.'
And there's that dreadful ad. Can't even remember what it is advertising, someoverpriced and ineffective cold remedy, I believe. The one that extols the virtues of 'people who just get on with it', while showing a woman with a sniffle buying food, or some such getting-on-with-it-ness.
Now I think the problem for me in this is the implications about those who don't get on with it. Those who let it all get on top of them, those who stop, those who buckle under a little. It would be fine if this phrase was only bandied around about the usually well, but when it is applied to those who have long term conditions, it can all get a bit upsetting and in some cases intimidating.
You're doing your best to function, to fight through the pain, the never ending side effects, infection, exhaustion and whatever else, and you're having a bad day/week/month/year. You need to sit back and take it easy, to NOT 'just get on with it'. But you're bombarded by images and accolades of people doing just that, and how very inspirational they are. They don't let it get them down, they don't let it beat them. So if you do, you're pretty hopeless really aren't you.
OK, so I realise not every person is saying or thinking this. But it's more common I think than we could imagine. What I want to say is that you don't have to be inspirational today. You can stay inside, let life carry on and just cope. You can just be. And that does not mean you are in any sense worthless, useless or any other type of less. It simply means that you are hurting, you are human and you are taking time that you need to look after yourself. There may come a time when 'getting on with it' is better for you than not, and I am the first to say that a little activism can be a good and healing thing, but there is the time when it is just not. And that is OK.
The problem is, our society is throwing out ever more widely messages about what use someone is to society as a whole. Today I have read a report which says that workfare will be extended to people on ESA, and not only extended, but in fact people will be forced into unpaid work for an indefinite period - as opposed to normal workfare rules which put people into short term employment. What does this say about attitudes to disabled people? They are not worth very much as it is, so better make them more productive? Even if that work is unpaid? Now, many people with chronic conditions and disabilities find that working enhances their lives very much and I am in full favour of such for those able to do so and supported by their employers, but this new stipulation is somehow more sinister and has undertones of the whole 'drain on society' label applied by some. It's a scary world out there if you're ill.
What does God think, I wonder? Does God think people should just get on with it and should be productive and useful to society? Or does God just, actually, Love?
So I want to encourage you, all my friends who struggle with ill health of any description, to give yourselves a break. And to feel free to throw something at the TV when you next see the advert with that poor woman with the little sniffle who Just Gets On With It. ;)
'<insert name here> is so inspirational, you know. She is one of those people who just get on with it, you know, even when she has proper flu. She doesn't let it get her down.'
And there's that dreadful ad. Can't even remember what it is advertising, some
Now I think the problem for me in this is the implications about those who don't get on with it. Those who let it all get on top of them, those who stop, those who buckle under a little. It would be fine if this phrase was only bandied around about the usually well, but when it is applied to those who have long term conditions, it can all get a bit upsetting and in some cases intimidating.
You're doing your best to function, to fight through the pain, the never ending side effects, infection, exhaustion and whatever else, and you're having a bad day/week/month/year. You need to sit back and take it easy, to NOT 'just get on with it'. But you're bombarded by images and accolades of people doing just that, and how very inspirational they are. They don't let it get them down, they don't let it beat them. So if you do, you're pretty hopeless really aren't you.
OK, so I realise not every person is saying or thinking this. But it's more common I think than we could imagine. What I want to say is that you don't have to be inspirational today. You can stay inside, let life carry on and just cope. You can just be. And that does not mean you are in any sense worthless, useless or any other type of less. It simply means that you are hurting, you are human and you are taking time that you need to look after yourself. There may come a time when 'getting on with it' is better for you than not, and I am the first to say that a little activism can be a good and healing thing, but there is the time when it is just not. And that is OK.
The problem is, our society is throwing out ever more widely messages about what use someone is to society as a whole. Today I have read a report which says that workfare will be extended to people on ESA, and not only extended, but in fact people will be forced into unpaid work for an indefinite period - as opposed to normal workfare rules which put people into short term employment. What does this say about attitudes to disabled people? They are not worth very much as it is, so better make them more productive? Even if that work is unpaid? Now, many people with chronic conditions and disabilities find that working enhances their lives very much and I am in full favour of such for those able to do so and supported by their employers, but this new stipulation is somehow more sinister and has undertones of the whole 'drain on society' label applied by some. It's a scary world out there if you're ill.
What does God think, I wonder? Does God think people should just get on with it and should be productive and useful to society? Or does God just, actually, Love?
So I want to encourage you, all my friends who struggle with ill health of any description, to give yourselves a break. And to feel free to throw something at the TV when you next see the advert with that poor woman with the little sniffle who Just Gets On With It. ;)
Wednesday, 4 January 2012
New Year - New Hopes
I'd love to get some exercise this year, if I could. Early last year my physio put me on a pulmonary rehab course which I found so helpful. It wasn't the most rigorous of exercise and you weren't going to break any records, form any muscles or lose much weight, but it was the whole thing I think of starting to take some control again of your body when it had been so battered. I love the thought of being able to do that once again. Until the next battering, I suppose...but I won't give up, and stop. I might even get out that dusty Wii fit...
A big hope for me this year is that I will finally write my first book. It's been forming for a long time now, and I think I just need to go for it in order for it to come together. Themes of healing, the church and disability, wholeness/'usefulness', all that kind of stuff. I'm excited about starting.
And then of course there is our work here in Priorslee....I'm excited about what this year will bring.
So bring it on - good and bad. And hopefully I'll not need those IVs again soon.
Saturday, 19 November 2011
The children have it right...
Watching Children in Need last night with the Adventurous Pair caused me to think upon how children have a natural sense of justice and fairness and a horror at what is blatantly wrong. All through the show I was heading off cries of 'pleeeeease mummy, please donate again, come on, how can you not' and various other emotional blackmail-ish types of statements ;)
Some might say that this is because children are easily influenced, but I think it's due to their God-given sense of fair play. Us adults have often become somewhat jaded and cynical and downright apathetic about these things, but there is nothing like a child in tears at a film of another child with a disability to help one regain some perspective on the world. Maybe we need to listen to the children more.
This was reinforced to me the other day when watching one of Adventurous Girl's literacy lessons. The children were challenged in groups to research somebody involved in civil rights. All the groups approached the task with great interest and you could sense the outrage rising as they found out facts about people such as Martin Luther King and Ghandi. Adventurous Girl's scathing and unbelieving remarks about apartheid would match any passionate politician and doubtless come from a purer agenda. I wonder if this is closer to what God's heart is like; the innocence of a child facing harsh realities and responding with tears and stark unbelief. Maybe we should listen to the children more and allow ourselves to feel it again the way we once did. Maybe then we might get up and do something more. Who knows.
Some might say that this is because children are easily influenced, but I think it's due to their God-given sense of fair play. Us adults have often become somewhat jaded and cynical and downright apathetic about these things, but there is nothing like a child in tears at a film of another child with a disability to help one regain some perspective on the world. Maybe we need to listen to the children more.
This was reinforced to me the other day when watching one of Adventurous Girl's literacy lessons. The children were challenged in groups to research somebody involved in civil rights. All the groups approached the task with great interest and you could sense the outrage rising as they found out facts about people such as Martin Luther King and Ghandi. Adventurous Girl's scathing and unbelieving remarks about apartheid would match any passionate politician and doubtless come from a purer agenda. I wonder if this is closer to what God's heart is like; the innocence of a child facing harsh realities and responding with tears and stark unbelief. Maybe we should listen to the children more and allow ourselves to feel it again the way we once did. Maybe then we might get up and do something more. Who knows.
Tuesday, 24 May 2011
Benefit Scroungers R Us
I am seriously worried about the future. Not so much for me, because I am blessed to have the support I have, but for those people suffering from chronic illnesses and disability who are running out of options.
You may think I am being somewhat over dramatic here, but in reality, there is a problem, and it is being hidden, and there is a systematic assault on the very people who need protecting most. But the news doesn't report this. The voices are dim, the fights are weak. The most vociferous are often the most suffering. And this is wrong.
A couple of weeks back there was a march against the DLA/ESA reform in London, called the Hardest Hit. It barely featured in the 1 O Clock news, let alone the 6/10pm slots. Was almost one of those afterthoughts - those 'aah, isn't this nice, people in wheelchairs out for the day' type things. And then came the Daily Mail type comments; 'if they can get down to London to protest, they can jolly well work and stop scrounging off the taxpayers money'. There is a lack of empathy pervading society that shocks me and leaves me cold, and yet this could be just round the corner for any one of us.
I had a look at the new proposed criteria for the 'Personal Independence Plan' and only became more worried about the narrowing of criteria and the loss of dignity this will inevitably bring. I fear that many will now be caught in a trap; that of not being 'disabled enough' to gain disability benefits, and yet being too ill to be employed, not being able to get JSA because of not being able to get to the Jobcentre due to illness or lack of mobility, having lost mobility allowance....and so on, and so on. A vicious circle of ever decreasing proportions which may leave some at best housebound and despairing and at worst - well, let's not go there. As a society which prides itself on looking after its most vulnerable citizens, we are in danger of falling into a pit of unseen depths. If you still think I am being dramatic, please take some time to read this to see how this is already affecting thousands.
For me as a Christian, this is affecting me so much because of how we see people. Are people valuable, or are they commodities? Do people matter because they are people, because they are who they are, or because of what they can bring to society? As someone who believes all are made in God's image and all are inexplicably precious and amazing, it feels like these reforms may be devaluing and cutting off those who cannot fight for themselves, and this is utterly contrary to God's ways.
For me as someone with chronic illness, this is affecting me so much because I am reliant; on my family and on society as a whole to live. Perhaps for those who have no support system their thinking will soon verge on whether they have any value at all, whether it is worth fighting, whether it is better to give up, and stop burdening others.
I am worried about the future. The future looks cold. What are we going to do about it?
You may think I am being somewhat over dramatic here, but in reality, there is a problem, and it is being hidden, and there is a systematic assault on the very people who need protecting most. But the news doesn't report this. The voices are dim, the fights are weak. The most vociferous are often the most suffering. And this is wrong.
A couple of weeks back there was a march against the DLA/ESA reform in London, called the Hardest Hit. It barely featured in the 1 O Clock news, let alone the 6/10pm slots. Was almost one of those afterthoughts - those 'aah, isn't this nice, people in wheelchairs out for the day' type things. And then came the Daily Mail type comments; 'if they can get down to London to protest, they can jolly well work and stop scrounging off the taxpayers money'. There is a lack of empathy pervading society that shocks me and leaves me cold, and yet this could be just round the corner for any one of us.
I had a look at the new proposed criteria for the 'Personal Independence Plan' and only became more worried about the narrowing of criteria and the loss of dignity this will inevitably bring. I fear that many will now be caught in a trap; that of not being 'disabled enough' to gain disability benefits, and yet being too ill to be employed, not being able to get JSA because of not being able to get to the Jobcentre due to illness or lack of mobility, having lost mobility allowance....and so on, and so on. A vicious circle of ever decreasing proportions which may leave some at best housebound and despairing and at worst - well, let's not go there. As a society which prides itself on looking after its most vulnerable citizens, we are in danger of falling into a pit of unseen depths. If you still think I am being dramatic, please take some time to read this to see how this is already affecting thousands.
For me as a Christian, this is affecting me so much because of how we see people. Are people valuable, or are they commodities? Do people matter because they are people, because they are who they are, or because of what they can bring to society? As someone who believes all are made in God's image and all are inexplicably precious and amazing, it feels like these reforms may be devaluing and cutting off those who cannot fight for themselves, and this is utterly contrary to God's ways.
For me as someone with chronic illness, this is affecting me so much because I am reliant; on my family and on society as a whole to live. Perhaps for those who have no support system their thinking will soon verge on whether they have any value at all, whether it is worth fighting, whether it is better to give up, and stop burdening others.
I am worried about the future. The future looks cold. What are we going to do about it?
Tuesday, 29 March 2011
Strength and Self Pity
Yesterday I indulged in a nice little Pity Party, all by myself.
Adventure Bloke had come home from an hours run and had rather nice calf definition, if I may say so. But there was me, deciding that it was Not Fair that I could not go out on an hour's run and have calf definition. Because I have messed up lungs, and because yesterday was a Bad Day. I did get the Adventurous pair to the park after school, but paid the price. Breathing? Bonus!
This led to me wallowing in a bit of good old fashioned self pity. Many of you lovely people say to me that I am so strong and brave. But I'm not, really. I cry and I scream and I rant at this disease, and I don't feel very strong at all. I indulge in some envy fairly often. Last night it was envying the midwives on One Born Every Minute. You see, I would love to do that job, what an exciting place to be (I know, sad, exhausting and draining too) But I can't. So I envy their strength. Then I start envying the Adventurous Pair's teachers at school, because they are doing the job I used to do, and used to do rather well, really. Then I start envying people on the street, people at the gym, checkout people in Morrisons. Because they are strong (or seem so to my narrow view) Because they don't have screwed up lungs. Because they can work. Because they can run and have Calf Definition.
Adventure Bloke demurred my kind invitation to my Pity Party, but let me attend nevertheless. Afterwards, he hugged me, and said it was OK. I think that's kind of like God. I don't think God expects me to be calm and stoic at all times and to smile at my disease and say 'it's fine, these things come to try us.' I rather think instead that God hurts with me. That when the pain is so bad I cry that God cries too.
I have learnt that life is not fair. My parents used to tell me this a lot. And to my disgust I now use the same phraseology to my children, which annoys them just as much as it did me. But it is really not. Is life fair for those in Japan affected by the tragic events lately? Life fair for those caught in conflict in Libya? Life fair for the Mumsnetter who lost her darling 2 year old son to cancer last week?
Some say when we talk about suffering that it is God's will. But substitute that phrase for the 'is life fair' phrase in the paragraph above. Can that really be said of God? I don't think so. I don't believe God wills this stuff. But I do believe God is in it with us. My understanding is flawed and shallow and tinged with self pity. But my experience is of a God who hurts, who knows what it is like to lose a child and knows what it is like to not be able to breathe through pain. And who has done something about it.
So I'll still engage in the occasional pity party, I reckon, if only to justify chocolate eating. But then I'll remember the verse from Psalm 73: "My health fails, my spirits droop, yet God remains! He is the strength of my heart, he is mine forever."
Adventure Bloke had come home from an hours run and had rather nice calf definition, if I may say so. But there was me, deciding that it was Not Fair that I could not go out on an hour's run and have calf definition. Because I have messed up lungs, and because yesterday was a Bad Day. I did get the Adventurous pair to the park after school, but paid the price. Breathing? Bonus!
This led to me wallowing in a bit of good old fashioned self pity. Many of you lovely people say to me that I am so strong and brave. But I'm not, really. I cry and I scream and I rant at this disease, and I don't feel very strong at all. I indulge in some envy fairly often. Last night it was envying the midwives on One Born Every Minute. You see, I would love to do that job, what an exciting place to be (I know, sad, exhausting and draining too) But I can't. So I envy their strength. Then I start envying the Adventurous Pair's teachers at school, because they are doing the job I used to do, and used to do rather well, really. Then I start envying people on the street, people at the gym, checkout people in Morrisons. Because they are strong (or seem so to my narrow view) Because they don't have screwed up lungs. Because they can work. Because they can run and have Calf Definition.
Adventure Bloke demurred my kind invitation to my Pity Party, but let me attend nevertheless. Afterwards, he hugged me, and said it was OK. I think that's kind of like God. I don't think God expects me to be calm and stoic at all times and to smile at my disease and say 'it's fine, these things come to try us.' I rather think instead that God hurts with me. That when the pain is so bad I cry that God cries too.
I have learnt that life is not fair. My parents used to tell me this a lot. And to my disgust I now use the same phraseology to my children, which annoys them just as much as it did me. But it is really not. Is life fair for those in Japan affected by the tragic events lately? Life fair for those caught in conflict in Libya? Life fair for the Mumsnetter who lost her darling 2 year old son to cancer last week?
Some say when we talk about suffering that it is God's will. But substitute that phrase for the 'is life fair' phrase in the paragraph above. Can that really be said of God? I don't think so. I don't believe God wills this stuff. But I do believe God is in it with us. My understanding is flawed and shallow and tinged with self pity. But my experience is of a God who hurts, who knows what it is like to lose a child and knows what it is like to not be able to breathe through pain. And who has done something about it.
So I'll still engage in the occasional pity party, I reckon, if only to justify chocolate eating. But then I'll remember the verse from Psalm 73: "My health fails, my spirits droop, yet God remains! He is the strength of my heart, he is mine forever."
Sunday, 13 March 2011
What value on life?
But the documentary threw up some deeply disturbing questions, questions about life, value, disability and euthanasia. The narrator recounted how the statistics of babies born at this gestation were terribly negative, that in fact it was rare that a baby would live. And this led to questions about whether it was even worth trying, or a waste of NHS resources, which could go to 'better use' elsewhere.
Alongside this questions were raised about quality of life, and whether it was worth saving babies who would go on to be disabled, and have 'poorer' quality of life, whatever that may mean (some of the 'disabilities' tiny preemies go on to have are poor eyesight or hearing, for example). While I appreciate the statistics are poor (although not as poor as this documentary contended, according to the ever-right mumsnet.com ;)) I do wonder about the consequences of statements such as the spoken and unspoken ones in this programme. If we say that one set of people are not worth ploughing resources into, what does it say about other sets that society may deem less than valuable? If it is not worth endeavouring to save a 23 week baby, is it worth saving somebody profoundly disabled? If phrases such as 'quality of life' are bandied round about these matters then there could so easily be a danger of the beginning of making medical decisions based on how low the quality of life of the patient is deemed to be, not necessarily about the patient. It is evident to me as well that some do take this further, and add lack of use into the equation. While most of society, I hope, are concerned with quality of life in terms of enjoyment and comfort, some seem to look at what someone puts into society, and if they are unable to, value is somehow thought of as lesser.
Now as you know, I have a wee bee in my bonnet about usefulness, particularly when it comes to living with disability or chronic illness.But even only with the scenario of judging based on quality of life, I worry that society may one day turn on the most vulnerable, and decide that their quality of life is so poor that it's not really worth putting resources into them, and the even scarier scenario of deciding at or before birth whether these people are worth 'keeping'. Now I realise this is slightly on the hysterical side, but I guess living on the edge with illness can cause dramatic mind wanderings at times :)
Mostly, my view on this is all taken up in how I see God seeing us, each one of us, 23 week baby or 91 year old cancer patient. We are valuable, we are loved and we are lovingly created to be in relationship with the God of the universe. I know it cannot be cut and dried, we cannot simply say 'everyone should be treated the same' but if there can be a view of value not based on quality of life and/or usefulness behind the decisions things may be different. Some may argue that we should leave things to take their natural cause, and that 23 week babies would never have survived before technology, but you could use this argument for any medical intervention. I wouldn't be alive if I'd been born 100 years ago, so that argument sits on somewhat shaky ground for me. The thing is, we have the technology, we have the expertise. Should we not use it?
But it's still not simple. The suffering the baby may go through undergoing such treatment is cited; but on the other side, we hear of the miracles, those 23 weekers getting through it and living delightful and loved lives (thanks to Mumsnet for many such testimonies). We cannot say that just because they may have disabilities they will not have good lives, we just cannot. Do ill people not deserve to live? Where can this line of thinking stop?
I realise I have asked a load of questions here, and not given answers. How can I? I feel wretched for the parents and wretched for the doctors. All I know for sure is that my father in heaven loves these tiny babies, and that they are people of value. In saying that, I can totally understand those parents who say it's time to let go, time to stop. I haven't walked in their shoes, and therefore I cannot make blanket statements about What Is Good or What God Wants.
I guess it all goes back to my mini mission: To speak for those whose voices have been dimmed, those who feel society has condemned them to a life of uselessness, those who feel they have no value because they cannot Do. May we never place a price on life, in whatever 'quality' that may be. May we simply be representatives of God's all encompassing love and grace, for all, in all times.
Monday, 7 February 2011
The Spoon Theory
It is hard to explain what it is like living with illness, especially when you often look so normal (well many friends may disagree on this one ;) ) This lady who has lupus has produced what is called 'The Spoon Theory' which conveys as well as anything can a little of what it can be like. For me, some days I start with very few 'spoons' and others have quite a lot, but there is always a limit, and once they're gone that's me done that day (you'll really have to read the link for any of this to make any sense!)
Days where my spoons are few (!) taking Adventure Girl and Boy to school may use them up entirely, and sometimes there are not even enough for that, and Adventure Bloke steps in and takes over, as he always does so gracefully. Has done today, in fact, as I assessed this morning that my spoon number may be somewhat low today.
I hope that goes some way towards explaining what it can be like?
Days where my spoons are few (!) taking Adventure Girl and Boy to school may use them up entirely, and sometimes there are not even enough for that, and Adventure Bloke steps in and takes over, as he always does so gracefully. Has done today, in fact, as I assessed this morning that my spoon number may be somewhat low today.
I hope that goes some way towards explaining what it can be like?
Wednesday, 26 January 2011
Beginning of the Adventure
So, for a while now I've been thinking that I should blog. Not sure yet where this is going to go but we will see where it takes us. I've entitled this blog 'GreatAdventure' because I've been reflecting lately how life is an adventure, and Helen Keller's statement above captures this. For me, life is an adventure because I am journeying with God and everywhere that takes me. It's certainly not a nice tidy adventure with endings that tie up concisely where the villains always get sorted out and the heroes always prevail, but it's an exciting adventure that more than anything is full of hope.
I've only added one blog to my list so far because it's something on my mind a lot at the moment. Take a look at the 'One Month Before Heartbreak' blog and have a browse. For many, living with disability and chronic illness can be an incredibly lonely life, and proposed government cuts rightly or wrongly are causing many to fear for their future. I long to see a fair and just society where the vulnerable are upheld, cared for and included, and wonder how we can all play our part in causing this to happen, or at least to get on the right road towards it.
I've only added one blog to my list so far because it's something on my mind a lot at the moment. Take a look at the 'One Month Before Heartbreak' blog and have a browse. For many, living with disability and chronic illness can be an incredibly lonely life, and proposed government cuts rightly or wrongly are causing many to fear for their future. I long to see a fair and just society where the vulnerable are upheld, cared for and included, and wonder how we can all play our part in causing this to happen, or at least to get on the right road towards it.
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