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...;)

Being (sometimes) beats doing.

I'm having a poorly week. Lungs infected again and this time it's hit me pretty hard. For nearly 4 days I've hardly been able to crawl out of bed, though I made it downstairs last night in a somewhat jelly like state. What it did mean is that I couldn't do anything on the To Do list I'd been stressing over at the end of last week, and had to leave things be.

Now, at first, this frustrates me greatly. I am far too much an activist to be ill, and yet I'm ill so much you'd have thought I'd have learned by now to sit back and be graceful and lovely or something. But instead I mutter and annoy Tim about the mess downstairs and the to do pile. That is unless it's a really bad day, in which case I'll say nothing at all and give him some peace ;)

This time however, I've found something different. I found I could connect with God again. How does this work? In the last few weeks I've been busy but praying, but finding God's presence just...well, wasn't there. Or was, but not anywhere I could find it. Even in the asking. But it's when I get really poorly I finally find what I have been searching for. Just gently, just whispers, senses, something changing in the atmosphere, and suddenly I know it. God's with me.

Now, I know, of course, that this is always the case, but let's face it, it's not something that's always tangible. So here's the question: Why is it that it's in the time of the most suffering that God reveals Godself more tangibly? God could just heal me, or something, but instead there's this amazing grace, this gentle love, this awesome presence weaving through my pain. I almost think these times are a gift in some way.

Now, this doesn't happen every time I'm ill, don't get me wrong. There will be those times I just feel devoid of it all and wonder where God is anyway and grumble and feel generally sorry for myself. But just occasionally there is this grace, if I allow it. And it's pretty good.

So where does that leave me? Is being poorly better than being well? Is being better than doing? Well....hmmmm. No, being ill is not better. I'd have happy lungs if I could. But I think we could all do well to stop sometimes. To slow down and be, and let God find us in that vulnerability and lack of activism.

When I get better and get up will I remember this? Maybe. Or maybe I'll start stressing about my to do list. There must be a balance somewhere, I feel...

What do you do?

Whenever I go someplace new or meet new people, I always get The Question, and I have come to dread it somewhat. The question 'what do you do?' It's like we as a society buy into all the 'what we do defines us' stuff, and it comes out in the first question we ask a new person.

Now, I'm not completely innocent of this myself. Let's face it, it's often a conversation starter, and can help get a picture of a person. But for the person who doesn't feel able to respond with anything much it can be at best cringeworthy and at worst depressing or even terrifying. You're stood there thinking 'she'd going to ask what I do in a minute, and I'm going to have to say nothing, and she's going to be thinking this or that' etc. When in all reality we know they won't really be thinking very much at all apart from the mechanics of being friendly, because that is generally all it is.

I think there's something deeper behind the whole question that makes those who feel they don't 'do' less than useful. It's like you have to do to be worthy, to be productive, to contribute to society. But do you? Is your worth in your productivity? I think not.

Creativity and productivity are of course important and beneficial to our humanity. But there is the question of who we are which goes deeper than anything we do. For me, how God sees me is 100% more important than any label I can give myself, and I know that God's more concerned with stuff like compassion and justice than whether I have a job. And so that's what I'll strive towards, even in my worst times.

I keep pondering on good answers to The Question. For a while I really rebelled and told people I 'slobbed round watching Jeremy Kyle and eating cake all day', and for a while decided to be honest and tell people I used to teach but now I can't because I have lung disease. But I don't really like that one because it has undertones of not being any use any more. It's also possibly a bit in your face to start listing health woes as soon as you meet someone, poor individual! So I generally mutter a bit about working in a team with Tim, doing bits and bobs of admin and voluntary work and web stuff etc, but that's muffing it all up really, and again coming up with something that is endeavouring to label what I do, endeavouring to sound like I am of use.

One day I'll have the bravery to answer something such as 'what do I do? You mean who am I? A child of God.' And that is where it's at, because I don't need to be more than that.

However, I know in reality I'll keep dreading it and keep avoiding it and keep giving half answers. Because I'm English, and polite, and all that, and not very brave really. Never mind.

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."

What value on life?

I watched the BBC documentary 23 Week Babies the other night and it's been preying on my mind ever since. In the first case, pondering on the harrowing and unthinkable suffering parents of these incredibly premature babies go through, and endeavouring to imagine what it would be like (impossible to do so, really.) And then there are the dedicated health professionals involved in the process, and the decisions they have to make, decisions that could mean life or death, impossible decisions.

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.

Is God a User?

There is a certain phrase prevalent among Christians (particularly a certain 'flavour' of Christians) which comes under what I call Christian Jargon-ese. Now this phrase is something I never really thought about or worried about until Adventure Bloke wrote his most excellent Master's Thesis. As I began to read his notes and engage with the subject I realised that the phrase was sitting more and more uncomfortably with me.

I therefore would like to issue a challenge to my Christian friends who find themselves using this language. Do the words 'God can use you' or 'God uses anyone' or 'God used me' (and so on) ever creep into conversation? Read a good many Christian books and you will find these words oft repeated. The thing is, the words are used <no pun intended> with all good intentions. The premise behind the language is of God loving us so much God works through each of us, whatever our gifts are. But I would like to look beyond the intention and examine the language a little.

Now, imagine you see the words 'he used her' in a newspaper article. What would be the emotion coming to mind? Would it be positive? No, because the phrase in common usage means something entirely different. When somebody is 'used' it usually means they are 'abused', 'discarded', 'worthless'. Hardly feelings we would like to be associated with how God sees us. The verb 'to use someone' is in fact incredibly rarely describing a positive event. It is much more often telling a story of brokenness, of rejection.

So where do we get it, and why do we say it? You may be surprised to find out that the bible never once tells of God 'using' somebody. Nothing. Nada. God working with, yes. God loving, even more. But using? Never.

What do our friends who don't share our beliefs think if they hear this language? Society pretty much only uses this verb with negative connotations attached. So banding round phrases such as 'God has used you so much!' may be having the opposite effect to what is intended. Who, after all, wants to be 'used?' (and my dear friends who are not Christians, I would love to hear your opinions on this :))

Now, one problem lies in the language, what we really mean, and how we can say it. I was talking with a dear friend the other day about this issue and we were sharing how easily it is said and how we need to find alternatives. We decided that a positive and meaningful alternative was possibly 'God partners with us.' This is a powerful representation of God working with us, God seeing us as valuable and giving us the choice to surrender to him so he can partner with us. Almost breathtakingly simple? Some of you, however, may be thinking about how 'God using me' language reflects us being totally open to God, saying for example 'I am totally giving my life to God, so I invite God to 'use' me however he wants.' Again, the intention works, and it can be difficult to find language that does the same job, but I still think it remains problematic. How can we say that God loves us and uses us in the same sentence? Can a God who loves be a God who uses? Well yes, if you say that 'uses' merely means God graciously working within what we have invited God to do. But no, if we want to engage with those around us and respect what such language may feel like to them.

I think there is another aspect to this too, something on a deeper scale. I wonder if the wording 'God can use us' implies that 'we need to be useful.' And I wonder if there is an unacknowledged presumption at the heart of it; a presumption that says 'we can only be used if we are useful', ie God can only work with us and through us if we are doing, if we are being of use in some way. Society reflects this to a certain extent - how many of us find that the first thing we are asked is 'what do you do?' From the point of view of someone who doesn't 'do' an awful lot due to illness, this can be destroying. And to wonder if I cannot be used by God because I cannot be useful, because I am Invalid, is a dark and scary kind of pattern of thought. Yet I think there is a subconscious level at which this does happen.

So I challenge you (and me): Chuck out the 'use' and chuck out the 'useful'. Let's liberate ourselves from the expression which may only be viewed negatively by some, and which may be at the root of insecurity for many followers of Christ. Let's be partners with God. How amazing would that be?

These are my very unformed thoughts, and I could witter for a while yet, but will stop here for now. I am fascinated by this issue and would be interested to hear thoughts on this, even those that tell me not to be so daft and over-thinking ;)

So, I wonder what other Christian Jargon-ese should go into Room 101? Answers on a postcard....

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?