Yet Another SF and Suffering Blogpost.

I know, I know, there are thousands floating round the internet. But seeing as I am sitting propped up in bed and have just taken painkillers, I have a window where I may be able to pen something that makes some kind of sense. Possibly.

First of all I should link to Adventure Bloke's musings on the subject - he preached it on Sunday, and it is Very Good. http://carterclan.me.uk/sermons/so-what-about-bone-cancer-in-children/

I think that words like Mr Fry's can be seriously shocking for some folk who have perhaps not thought too deeply about suffering, or who can bat them away with not so nice words about the man himself. For me, the words resonate, because it is the experience of humanity throughout the ages. I'm reading the sequel to 'Call the Midwife' at the moment, 'Shadows of the Workhouse' by Jennifer Worth and it is incredibly, deeply harrowing, an account of children's lives in a turn of the century workhouse. I.m sitting there reading it thinking God, where were you when this 6 year old girl was beaten almost to death for nothing. Where were you when these childrens' parents both died and they were sent to the workhouse and treated so abysmally. It's sickening that one human being could do such things to another. Where was God in that?

I'm pretty ill right now. I've got pleuirsy pain, breathing's hard work, I'm sick. I feel helpless and frustrated. Missed Adventure Boy's parents evening and will miss the Girl's tomorrow. It's Not Fair. Looking at other situations such as those described above it's far less Not Fair than some. Yet in my situation, as in other suffering across the world, I can look to God and find...not answers, really. But something. I can find hope. The sensation of a God who looks at all this stuff and weeps. Weeps with us. That may not feel enough to that child abused so young - after all, if God was weeping with her, why couldn't he do something? I don't know. All I know is that this world is well skewed off centre. Not what it was created to be, and people are not who they were created to be. Something went stinkingly wrong and that resonated through history. And God weeps.

He doesn't just do that. He sent Jesus. Jesus born in squalor, died in agony. Jesus the one who can identify in our suffering, Jesus the one who went into our suffering. An immense statement of that Father's love for us. He didn't sit back and do nothing. He knows.

I'm aware it's still not enough, in terms of answers. There simply are not sufficient answers. But we can look at the Bible, we can look at the Psalmist ranting and railing at God, we can look at God's huge emotions spilling over his world in the writings of the Prophets, we can look at Jesus' time on earth and death and glorious resurrection and we can find a voice that speaks through the suffering and says 'I am here'. We can find hope and we can find a depth in the suffering we never guessed we would.

I'd like to be better. I'd like this chronic illness to stop overshadowing my life and cancelling my appointments. I'd like to find out who I could be if I had strength. But I have found so much of God in the depths, that it's difficult to imagine that other life. I live this life, and am called where I am, in the body I am in. I need to decide daily to 'press on' whether in pain or not. Not so much to come to the conclusion that the illness is sent from God to teach me a lesson. Nope. That's not how it goes. People everywhere get ill. They just do. Nothing they did wrong, nothing they did right. It happens. It happens because of the creation groaning, waiting to be righted. I'm waiting for that too, in pain and in hope.

I like Mr Fry, I'm fairly fond of QI when there's nothing else on. ;-) I hope he finds what he so desperately needs, and wish him happiness. If nothing else, his words have sparked so much thought and debate which can only be good. Christians need to be honest, to say that their lives are not easier than other lives because of our faith, to say that we struggle too, and we don't get it either. But to testify to the more that we see, to the peace beyond understanding that we sometimes fleetingly catch hold of, to the beauty underneath the pain, to the world groaning in its' wait for healing.

The Great Unknown

I'm very taken by some lyrics from a Hillsong United song at the moment. The song is called 'Oceans' and the words go:

'You called me out upon the waters
The Great Unknown,
Where feet may fail.
And there I find you in the mystery
In Oceans Deep
My faith will stand....'

There is something in these words that resonate deeply in my spirit. Whatever some may say, as Christians we do not have a golden ticket to a happy, healthy and wealthy life. We are not exempt from suffering or disease. We do not know what will happen to us in this life. We are called out upon the waters to the Great Unknown. Both the great unknown in what may happen in our lives, and the great unknown in who God really is, the mystery of it all, the Cloud of Unknowing.

And yet, as these words say, there we find God. There we find God in the mystery, in the unknowing. In the suffering, in the everyday, in the wide and the deep and the long and the unknown. There we find God at work in our lives, sometimes most evident when we are at our lowest ebb, when we can no longer find resources within ourselves.

And there, in Oceans deep, our faith will stand.

It wobbles sometimes, if you're anything like me. Wobbles pretty violently, and nearly falls over. But then like the proverbial weeble we are up again, standing. I wonder if it matters to God whether our standing is firm or weeble-like. I don't think so, really. Do you? What I do think is that God holds us there, wobbly or not. 'In oceans deep' we are not lost or drowned. In the Great Unknown we are not bewildered and beaten. In the mystery we find God. Again, and again, and again.

'Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Saviour.'

Amen.

The Great In Between

So, Holy Saturday. A day between the absolute hideous sadness and the incredible joy. Balanced somewhere, tinged by hope for us, but not for those on the original day. Hope had left. Everything had changed, shut down, gone. Nothing remained. Mary, her tears falling without ceasing as she contemplated, and asked Why.

For us, it can be like our lives are in this Great In Between time. Tinged by sadness, shot through with hope. Sometimes one weighing greater than the other. For me, I've lately been finding it difficult to take my own advice regarding contentment (see last few posts), let alone Paul's exhortations in Philippians 4. I've been stuck on one end of the great in between scale, feeling little of hope and joy. Letting my physical state take over where my spirit was. It's easy to do, and I don't blame myself, but why do I forget so easily? Why do I not take hold of the hope, spend time pursuing God, and instead wallowing in the hopelessness of me? I've been stuck with infection, mainly housebound for the past few weeks now. It's frustrated me more than usual; I've been exercising a healthy dose of discontent with this lot. I got a bit sulky and felt militant at the thought of blogging or tweeting, because, you know, I might have to actually face up to the fact that this time, I wasn't really coping.

I'm still not better, as far as that word goes for me, but I have a little more strength. The main factor that caused me to blog today though arose from the fact that I was housebound yesterday. There were Adventure Bloke and the kids, off to Messy Church, and there was I, cross about not being able to go. Cross at Adventure Bloke for telling me plainly I shouldn't go and cross at God that he hadn't healed me so I could get out of this <insert inappropriate wordage> house. But then God surprised me, as God loves to do. I decided I should take the quiet time I had to go and reflect a bit on Good Friday. After all, it's what we Christians should do, right? A bit of reflection? Yep. So I did. And there God came. Met with me in that broken and slightly sulky place. Took me out of the mards and into his presence. In the words of the great Bethel Music in their song 'I can feel you', it was 'like sun on my skin, warm to the touch'. A tangible experience of God being there in the pain again. Why don't I remember these things?

And it led me to today, to thinking on the in between-ness of this day. And reflecting that many of us live in the Great In Between. Not having fully taken hold of the triumph, joy and all consuming power of Sunday, and not being fully immersed in the grief of Friday (well....sometimes. And that's OK.) - but living in a kind of Saturday state. A friend posted this today, from the nuns at iBenedictines :

"There is a quietness and stillness about Holy Saturday — a day out of time — that belies the intense activity of Christ. We do not know what happened in the tomb, but the ancient belief in the harrowing of hell, when Christ descended into the underworld to set free all the righteous who had died before his coming, reminds us that God is at work even when he seems most distant, most unapproachable.

Today we have no sacraments to affirm the bonds between this world and the next, no colour or warmth to assuage our grief, no activity to distract us or give a false sense of security. We are simply waiting, all emotion spent. Most of us live our lives in perpetual Holy Saturday mode, our faith a bit wobbly, our hope a bit frail, but clinging to the cross and Resurrection with an obstinacy wiser than we know. Holy Saturday proclaims to anyone who will listen that when we cannot, God can and does. That is our faith, already tinged with Easter joy and gladness."

 That's it. That's where many - most? of us are. In a Saturday time, in the Great Between, in the Now and the Not Yet. And in this time we can find God there, working in our lives, achieving many things, things we might not even realise, and surprising us when we least expect it.  May we, today, this Holy Saturday, expect great things. May we, while living in the reality of the in-between, also grasp hold of the Great Hope of tomorrow, and live in the power of the resurrection, even while remaining in the brokenness of today.

It's Saturday....but Sunday's coming.

I can't wait.

Line in the Sand

I haven't blogged for a good while. I'd kind of lost my blogging confidence, muttering such thoughts to myself as 'no one really wants to read your meanderings anyway' or 'people are just being nice.' You know the kind of stuff. So it got longer and longer since I blogged and I got less and less inclined to.

Added to that, my faith was taking somewhat of a bashing this year. Looking back, there was always a (wobbly) certainty and peace underneath it all, but certain events gave me extreme difficulty and I didn't do the thing that would help the most; ie pray more. I looked back on this year as a bit of a wasted time. Two hospital visits and numerous infections, severe shortage of spoons and general exhaustion took a lot of the life and strength out of me. I was functioning at a fairly good level for much of the year, feel settled into my new community with lovely new friends but something was missing. It seems my poor health ground me down to an extent that apathy and hopelessness often reigned somewhat.

Then there were a couple of things that happened to friends and friends of friends. The loss of beautiful children from senseless disease, the loss of jobs, the loss of faith, Much loss and no sense in it. I got bashed.

So I went to New Wine this year a little fearful, in all honesty, a bit bitter possibly? Wondering how I would cope with emphasis on physical wholeness and healing when this pain had pervaded much of the year for me and my friends and acquaintances. When God had blatantly not healed a 9 year old girl with Leukaemia despite the fervent prayer of thousands. What could I do with that at New Wine?

So it was with a certain amount of trepidation I went into the Impact venue on the first night. Wasn't sure how my bashed faith would cope with the intense worship and teaching, while knowing deep inside was a longing for such which I'd possibly squashed a bit of late.

I needn't have worried. I walked into that venue and that was it. God was there. Well, he's everywhere, yep, but he was just there in this huge and powerful and awesome and stunning way that slammed into me with force and left me trembling. I turned to Adventure Bloke and said something akin to 'oh. So there is a God, then' and then fell into the most amazing week where somehow everything came together and all was well.

Somewhere on that first night the lovely Nicole Brown sang a new song, 'Line in the Sand'. These words struck me as a line for me, between the bashing and the wastedness and the loss of confidence.
'There's a line in the sand, and this is the end, for all that is broken, we know you can mend, And this is the start, the start of the new. For our God is able and oh so good, so good.' In a rush I knew again the truth of this, our God is able, and good. I never really thought this wasn't true, but had lived in a difficult time of doubts and fears where the questions sometimes outweighed the answers.

I'm not saying that God makes all things OK again. He blatantly does not. Suffering happens. The world is broken and we all suffer the consequences of that. Grief, loss, pain and illness pervade the world. But there is a hope we can grab in the midst of it all, a knowledge that God did the ultimate - got in it and suffered too. Wow. This is what I hold to, this is why my life is a great adventure, because I have a purpose. As someone said to me this week, this year was not a wasted year in God's economy. I will keep on doing what I do and being who I am, a person with cacked up lungs, who still believes fervently in God's goodness and faithfulness.

I saw healings of all sorts, physically and emotional and spiritual, some pretty profound stuff. Actually God healed acute lung pain in me that was threatening to mess up the week big time. There was no denying it. I also saw many people who carry their diseases and disabilities with strength and grandeur and who touch lives of all those around them with their honesty and their transparent love of God. Amazing.

So it's a line in the sand for me, and I'm back blogging, whether anyone likes it or not ;)

Good Friday. Yes it is.

So we went along to an Hour before the Cross service earlier on which Adventure Bloke was leading. In between keeping the Adventurous Pair separate and relieving Adventure Boy of a smuggled in Pick Up Stick (you'd be amazed how much creativity one eight year old can achieve with one Pick up Stick) I found something resonating deep in my spirit.

I've not been finding much of that kind of resonation (is that a word?) of late. It's all been a bit...meh. I'm not sure why, but I've been somewhat lethargic in prayer and in belief in general, despite trying. Sometimes we just have to keep taking one step after another, despite things not seeming to happen, and that's what it's been like. I could ponder for a while on why we have seasons like this, which are in all honesty fairly rubbish, but I won't, because I simply want to rejoice at the wonder that is Good Friday and let my spirit a bit free again. It's Nice.

When Adventure Bloke was reading the reflections some words struck me as being so profound. Talking about the moment Jesus died, he referred to this moment not being all beautiful and glorious, but being steeped with misery, loneliness and isolation, of being forsaken by his Father. Things didn't suddenly get wonderful. Not only had Jesus taken every sin, every sadness, every bit of man's inhumanity to man, every tear, every loneliness, every call in the dark upon himself, but on top of this was faced with a sudden and utter desolation, that of separation from God. I suppose this is why we can know God is indeed in this mess with us. Jesus actually knows. He did it all and he knows. He isn't standing by someone's hospital bed saying in cliched manner 'I really know how you feel', because he actually does know. And in a deeper way than anyone else possibly can. This is part of the mystery of his death.

It amazes me and has floored me anew today. I have times when I feel God has departed and wonder where he has gone, especially in times of acute physical illness, but Jesus actually experienced God really departing. We'll never experience that, God will always be with us - even when we don't feel it. Our faith is in God as present with us. We have an amazing hope.

So I think Good Friday was and is pretty good really. I think God did something about the suffering in the world and continues too. I think God suffered in a totally inexplicable and profound way we can only begin to glimpse. But those glimpses give us something to hold on to, to hope, to keep taking those steps.

And I can't wait for Sunday.

28 Too Many

I went along to the very wonderful New Wine Women's Day on Saturday. Occasionally these things can seem somewhat introspective and me-centred, depending on my frame of mind as much as the content of the programme. It is valid and helpful to go along expecting to receive, but if we cannot translate what we receive into doing what Jesus said - protecting the poor and the marginalised - then I fear that what we have received may be too shallow.

On this day, I was challenged and inspired by all the speakers, but one of the information slots disturbed me to the extent I wanted to blog about it. Anne-Marie Wilson is a campaigner and founder of the charity 28 Too Many which was 'created to help eradicate Female Genital Mutilation (FGM) in the twenty-eight countries within Africa where it is still practised.'.

140 million African women have undergone this awful practise and it affects women across the world, inluding in the UK. I find it incredibly difficult to understand how a mother could inflict this suffering upon her daughter, having gone through it herself, yet know these things are deeply instilled in certain cultures and accepted as the norm and as a good thing. To me it's another example of our sad and fallen world. If we don't stand up against such practises they will be allowed to carry on into countless further generations.

I'm not going to go into the details here, you can read more on the website, but I wanted to share my horror and sadness that this is happening. As Adventure Bloke is at the moment in a part of the world where this is at times practised it is all the more real to me. I wonder what we can do to help charities like 28 Too Many? I do know that if we never stand up for anything nothing ever gets done. I also know most of us are exhausted with the constant demands from many different types of charities, and there can easily be an apathy involved with such causes. Can we break through this and be different? Can I? I hope so.

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...;)

Tapestry ponderings

At our Thursday coffee group today we were thinking about waiting for answers to prayers, and waiting for God to act, and what about when God doesn't, and all that. We looked at the stories of Sarah and Hagar in the bible, thinking about how Sarah must have felt, having been promised for years that she would have a baby who would be the first of many descendants, and yet the promise seemed unfulfilled, and impossible now, having gone through the menopause.

If I were Sarah, I think I'd have shouted at God a little. 'You promised...but nothing. Are you there? I've had to live through years of hurt and humiliation. How can I trust in you?' Can't blame her really for taking matters into her own hands and trying to make it happen by getting her servant to sleep with her husband. The wait was far from over then: Often I've read this as Sarah having Isaac pretty well straight after Hagar had Ishmael, but it struck me this morning that it was another thirteen years before the angels visited to remind them of the promise, and who knows how long after that before Sarah was actually pregnant. She must have given up any hope, really.

One of the girls at my group reminded me of a poem I'd heard yonks ago about tapestries. The premise being that we see the back of the tapestry, the mess, the chaos, and have no idea of the big picture. So what we go through often seems to make no sense, and we cannot understand why God doesn't answer our prayer as we hope, and why God lets us go through such times. We see glimpses of shapes and colours, and catch edges of hope and beauty. But with this image we will one day see the beautiful picture. It's in the chaos now that we need to trust in the promises, and let those tiny glimpses of hope carry us and enliven us and thrill us.

I found a version of this poem often used by Corrie Ten Boom, a Jewish Christian lady who survived one of the Nazi death camps, Ravensbruck. For her to utter such words takes them above the cliched, the monotone, the obvious. She saw more suffering there than most of us ever see, yet believed and trusted in God's great plan.

My life is but a weaving between my God and me,
I do not choose the colours; He works so steadily.
Oft times He weaves in sorrow, and I in foolish pride,
Forget He sees the upper, and me the underside.
Not till the loom is silent, and the shuttles cease to fly,
Will God unroll the canvas, and explain the reason why.
The dark threads are as needful in the weavers skillful hand
As the threads of gold and silver in the pattern He has planned.

There is something profound in this, something that speaks of living through dark times, of not knowing why, of more than we understand. It's not a 'God always knows best, just accept his plan' thing. More of a 'there is so much more than this. So much we could never know, and we will trust, we will hope, we will know that one day we will see clearly.'

For now, I am content to see edges of sharp colours, shadows of exciting shapes. I'll probably keep shouting 'why?' at God, and questioning, and rightly so.  But I'll live in the hope seeing 'the threads of gold and silver in the pattern He has planned'.


Thanks to Pauline for the tapestry analogy today :)

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?

Why I love Brussians

I went to a meet up this weekend with a few people from the website 'Bronchiectasis R Us' which was set up a few years ago by the lovely Charlotte as a way for people suffering from this rare disease to connect and share information and support. We've been having an annual meet up for a few years now. These guys never cease to amaze me with their zest for life amidst such suffering.

You may be thinking these meet ups must be depressing, talking about illness, sharing symptoms etc. So far from it. It's a chance for us all to let go. I think that we know we can simply be ourselves with each other, because we share such a deep bond. We understand each other - we don't even need to say anything, we just need to look at each other and we know. We get it. It's like a breath of fresh air (no pun intended) Lovely family and friends are wonderful in their empathy and compassion but there is something about spending time with those going through the same as you, something liberating.

And you know, we don't sit moaning and grumbling (not too much anyway) ;) We have a giggle, mainly. There are people there who have more to contend with than 'only' bronchiectasis, they have other chronic illnesses, and yet there they are, smiling, encouraging, being there for others. I wanted to write this post as a tribute to the bravery of Brussians, and to their general attitude on life, which is positive, affirming, fun. Brussians don't go under, even with the most hideous of circumstances. Of course we all have times we scream and rant and moan and cry, but the support that comes from other members during that time is amazing, even when these others are yet again in hospital or struggling to breathe. Knowing these people has changed me, changed my outlook on this disease and you know what? I thank God for them.

So Charlotte - thankyou, thankyou and thankyou again, because you setting up this little site those years ago made many lives that little bit happier. And I am so glad I know you and the other Brussians. Sometimes I'm even grateful I am ill because of meeting you all, lovely, brave people. God bless. xxx

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.