Christmas: It's for the sorted, right?

Here I am; another Christmas, another infection. Actually, the last two Christmasses have been good, infection free, and I've been free to join in with all that seems to make Christmas - carol singing, present buying and wrapping, Christmas meals out, Christmas food. I've been in on that this year too, well, up to two days ago, when my lungs decided they weren't going to play ball. Since then, I've lain in bed or on the sofa, again observing Christmas but not being a part.

But I should know by now how stupid that is. Of course I am a part. Being sick does not make you a spare part, or not a part at all, of the celebration of the greatest gift that was ever given. The adverts would have us believe that Christmas is all about being so very sorted, so very unbroken. The beautiful family sits with more beautiful family and friends around the tastefully decorated table, real tree in the corner dripping with expensive and tasteful decorations (all colour co-ordinated, of course.) The baby giggles, the children play nicely together, everyone pulls crackers and oohs and aaahs at the exciting contents. The food is perfect; everything timed to be ready together, everything presented nicely. Everyone glows with good health and beauty, everyone loves each other, everyone is jolly and fulfilled and the epitome of what Christmas is all about.

Facebook can be even worse, for the sick and the sad. So many photos of happy families, joyous in their lives together, the appearance of all that is good. Christmassy family trips out, meals together, baking together. The sick mum looks on and despairs, her children sat again in front of screens instead of frolicking in the fields or making mince pies good enough for Mary Berry. Pictures of cosy, warm homes, perfectly decorated by someone strong enough, in body and spirit. (I am just as guilty as posting this version of our lives, at times.) Then there are round robins. You know, where all the achievements are listed and nothing bad happens. Hermione gained 14 A*s and learned to play the harp to grade 8 standard on top of mastering ballet and photography. You know the sort. (Thankfully, most of the ones we receive are real, and I love reading them.)

Is this what Christmas is?

It's not, is it? Because Christmas is for the broken. It's for those who haven't got it together, those who haven't got a perfect table to sit round with a perfect family, those who have no family at all, those who are confined to a sick bed, those who have lost someone they love, those who have divorced, those who are struggling with anxiety, those in crippling debt. Christmas is so much for the broken people, and God came down among us in a broken scenario. A stable, not a restful, peaceful place of Christmas card fantasy but a cold, unwelcoming, dirty, smelly setting for the son of God. God chose to come in brokenness, born to an unwed young mum, born in scandal and disgust. No perfect table and hot food for the bewildered, tired couple, no crackers to pull or family sat around in peace and harmony. A few mucky shepherds turned up, trailing their bleating sheep. How was that a perfect Christmas?

Yet that's exactly what it was. The most perfect Christmas. The one which meant everything. That Christmas meant freedom for many, hope for the world. It meant that God was among us. Immanuel.

You tore the night apart
And ripped the silent skies in half
Your glory breaking through the dark
And here our worlds collide
Divinity in man confined
This great design drawn out for me

(from 'King of Heaven' by Hillsong United)

I want to remember that Christmas isn't for the sorted, for those who have arrived. As I sit, frustrated by my body's treacherous unreliability at a time I want to feel strong, I think of that vulnerable baby and remember how God chose to come in vulnerability, in pain and darknesss, and think about how God is here in our darkness. If Christmas seems far from something you enjoy because of life being difficult, for whatever reason, remember what Christmas really is. A celebration of the Christ child, a celebration of God's passionate love for us. In the midst of my pain, this light breaks through and infuses me with hope, with joy that God did this, for me. For you.

May you be at peace this Christmas, wherever you are in life, whether you feel like that perfect family on TV, or whether you are so broken you cannot begin to imagine celebration. May you be infused with the peace beyond all understanding that comes from knowing God's saving plan for you. May you know the hope of the Christ child, held out over the wreckage of wrapping paper and squabbles, filling the emptiness and creeping through the shadows, pervading the gloom and exploding in glorious light.

(And may I get over having to cancel seeing Star Wars yesterday, obviously.)

Unproductive

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.

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 agents and 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

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?

Leaning

So, here it is. I have prevaricated and procrastinated for long enough. It's time to tell about that experience. You know, the big one, the one where I wondered if I'd see 2012 through.

What a fellowship, What a joy divine
Leaning on the everlasting arms
What a blessedness, what a peace that's mine
Leaning on the everlasting arms

This is me in the 2nd week of December, or thereabouts.

I suddenly went down with pneumonia in both lungs and went straight into hospital. I was there around 2.5 weeks. I don't have an awful lot of memory of the first week, it's a tad blurry. I remember being really, really scared. I was on constant 02 and still couldn't suck enough air in. I felt like I was drowning.

Lord I'm leaning, leaning
Safe and secure from all alarms
Leaning, leaning
Leaning on the everlasting arms

I only remember calling out to God once. 'Why?' The answer was in the silence and the struggle for every breath. In the recollection of Jesus' own agony. In the ministrations of the staff, in the love of my family and friends. No awesome glimpses of heaven or visions of angels. But a God who was next to me, in it with me, who knew.

What have I to dread
What have I to fear
Leaning on the everlasting arms
I have blessed peace with my Lord so near
Leaning on the everlasting arms

This was the worst exacerbation of my disease in at least 12 years. I cannot remember before such a desperate fight. I would wake up and be unable to move. The pain came with the lack of breath. I'm still recovering from that bit.

Lord I'm leaning, leaning
Safe and secure from all alarms
Leaning, leaning
Leaning on the everlasting arms

I'm aware that this is sounding somewhat melodramatic. But it's cathartic to get down how it was, exactly, and come to terms with that. I was too busy battling to reflect an awful lot, and then too busy recovering. I think I wrote on Facebook after the first week 'I feel like a piece of driftwood washed up to the shore.' I felt exactly that - like I'd been bashed around on the rocks for a week or so, and now it was time to rest. I'm still there, really. I've left the house a few times now, but normal life is still on the housebound side.

Oh how sweet to walk in the pilgrim way
Leaning on the everlasting arms
Oh how bright the path grows from day to day
Leaning on the everlasting arms

It puts a lot of stuff into perspective, something like that. Obvious stuff like the importance of good relationships, like being so very grateful for the love of family and friends. And less outward stuff like realising the importance and even sacredness of each moment. No point trying to live for the future. I could be straining for when I am 'better', whenever that may be, without taking each day for what it is, for the beautiful moments therein. For the laughter with my children over daft YouTube clips, for an evening with Adventure Bloke watching a favourite programme. For each moment with friends who visit. Life doesn't need to be so quick, so furious. Slowed down things can be appreciated.

Lord I'm leaning, leaning
Safe and secure from all alarms
Leaning, leaning
Leaning on the everlasting arms

I'm pondering on contentment at the moment, and what St Paul meant by 'the secret to contentment'. A lot of people seem to base it on circumstance, on health, on relationships. When one of those things is stripped out is it possible to be content? Is it possible that contentment could be to do with the moment, and finding God in the moment? More on this to come as I ponder.

So I'm Leaning. I was Leaning in the hospital, leaning further in than I had perhaps done ever before. The everlasting arms were there, as they always are and always will be. I think that in leaning, far from losing my own independence, I gain all that I am supposed to be, and the further I lean, the further the truth of this is revealed. Try some leaning yourself :)

With thanks to the amazing David Crowder Band.

 

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....

Christmas De-Trimmed

I’ve been somewhat of an observer of Christmas this year. The me that usually partakes fully in everything Christmassy I can possibly fit in has been overcome by the weakness of my body and so I’ve been sitting on the sidelines; firstly at home, watching as my family took part in carol singing, parties, services and school events; and now in hospital, hoping very much for a get-out-of-hospital-free card for Christmas Day.

So where does this fit into the Great Adventure? What can be possibly said to be of any good about this situation?  I’ve cried myself out, ranted and rallied, and then given in to the good of finally getting IV treatment (and that’s another story I won’t bore you with right now.)

It’s made me think about a few things though. What is Christmas when it is all stripped down? What is it when observed from a sofa or sickbed? What is it when someone cannot join in the festivities and the events, save in their mind and spirit?

Perhaps when Christmas is stripped down to its bare bones the truth is revealed. Perhaps behind the tinsel and the mulled wine there is a glimpse of something much more profound, much more thunderingly awesome. To avoid the use of the <too> much-used phrase ‘put the Christ back in Christmas’ we can find that Christ was always in Christmas, and Christ was always in everything. The incarnation of the Son of God is there at the heart of it all.

Not that carols and parties are mindless frivolities and that I am somehow rising above them in a martyr like fashion – I’d far prefer to be an active partaker. More that sometimes sitting back and being hit again by the ultimate truth behind the season can be important. It would be good if everyone could find time in the midst of this fraught last week before Christmas to think on these things – it’s easy for me, it’s writing blog posts under the influence of IV meds or watching endless Jeremy Kyle. Hmmm. <sulks at not having internet>

What is it about the incarnation that makes it so incredible, that somehow makes everything work, brings peace to those in the most desperate of circumstances? Possibly the simplicity of God loving the world so much; possibly the mind blowing way that Jesus lived among people, walked with them in their sorrow and sickness and pain. And still does today. It’s not only that, though. It’s something in the way Jesus was born not as a king in finery and riches. He was born in poverty and weakness. God identified with all that was not strong and successful. In the weakness of beginnings God showed that God is with us in more than just a cold and theoretical way. God really is with us in the mess, and however weak we are, whether in sickness or in other ways, knowing that can change everything.

I can’t say I am happy to be here and content in suffering and all that malarkey. But when I look at this beautiful celebration I’m amazed, and I’m living in hope, and I’m finding peace in the brokenness. I hope you all, in all your life situations, can find something of the immense love of God for you this Christmas.

And so the lonely, the sick, the downtrodden can know that Christmas is good. Please remember them in your own busy lives. I wonder who I can bring this hope to this Christmas.

Now, bring on the tinsel and mince pies, because the food here is rubbish and the decor somewhat lacking...;)