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

Why Friday is Good

I remember reading a book as a teen entitled 'It's Friday, but Sunday's Comin' (in true eighties cool teen speak.) I recall something about the truism that some Christians concentrate overly on the Friday bit and not enough on the Sunday, but without the Sunday the Friday would be pretty pointless. Without the empty tomb, this faith would have no power, no promise, no hope. But I believe in the empty tomb. I believe in the Sunday and I believe in hope.

On a day like today, Good Friday 2011, for example. Today I am finding breathing a drag, and am not being the most patient of mums or giving of wives, because breathing hurts, and I want it to stop really. I've had a few fearful moments today, but have in the midst of that been drawn to the mystery and greatness of what this day is all about. We Messy Churched this morning, and Adventure Bloke spoke about eggs and stones. Stones being by nature somewhat dead, cold objects, and then eggs looking like stones from the outside but symbolising new life and hope. Linking to the empty tomb and All That. Something struck me in that moment. About what I believe. It seems like the most way out, mad belief really, if you stop to think. Someone back from the dead? Hmmm. How could any rational person believe that? Not going into a hugely lengthy treatise on why I believe what I do, suffice to say I do, and all I experience in day to day life, despite that tricky little breathing problem, is bound up within that belief, is liberating, is compelling, is awesome. Something about this day takes me above the aggravations of how I feel and into the mystery of what God has done and how much God loves. Friday is good. And Sunday even better. I can't wait.

Love Wins, and all that

So, I've read the new Rob Bell book, 'Love Wins'. Whispers round the tinterweb about it verge from refreshing and thought provoking to cries of heresy and outrage. Hmmm. What did I think?

Well. The thing that always strikes me about Rob Bell, and no less than usual in this latest book, is his passion for Jesus. He totally bigs Him up. Again and again. Whatever else you say, you can't pretend that Rob doesn't love Jesus. I love how he talks about Jesus: 'Jesus is both near and intimate and personal, and big and wide and transcendent.' 'He holds the entire universe in his embrace. He is within and without time. He is the flesh-and-blood exposure of an eternal reality. He is the sacred power present in every dimension of creation.'

That Rocks.


This book is beautiful. It's poetic, thought provoking, sharp, cutting and warming. I don't agree with it all, but I have a sneaky suspicion that Rob would be most unhappy for everyone to say 'oh yes, you're right about everything, I'll change my mind and follow your thoughts from now on.' :) I reckon he wrote this for people to engage with the issues he writes about, to get deep into thought about it, to use our God given reason. So it is fine to not agree. But that doesn't make him wrong, or me right. Who knows?

The main issues he writes about in this book are 'heaven, hell, God, Jesus, salvation and repentance.' No small feat this one. And it's not a long wordy theological tome in any sense of the word. Read it in your coffee break/in the loo/in bed. It's engaging and pulls you in.

One of his main points is about Hell. The traditional view has (sometimes) been something like this: 'Unless you do not respond the right way, God will torture you forever, in Hell.' What do we do with something like that? How do we understand hell? Rob talks about it like this: If God is so great, surely God gets what God wants, and what God wants is to be in relationship with every single person, ever. Surely we can't say that God is not strong enough to do this? We narrow God by saying only a 'few are saved', he contends. Now, this is where the controversy comes in. Some may read his book and decide he is a Universalist, that all are saved, whatever they do and say, so what's the point of believing anything or sharing it with your friends? I don't know that he is saying that. He asks a lot of pointed questions, but doesn't necessarily come up with nice neat little answers. I like that he leaves a lot unsaid, because it makes me think. I don't know quite what I think really, but I'm with him on one thing. God is a God of power and justice, and 'not willing that any should perish', so we don't need to narrow God down. Who knows how it all works? Sometimes, all we need to know is that God is just and is Love. Hell - burning for eternity? Somehow, I think not. <ducks eggs and cries of 'burn the heretic!'> What I do know is that God created each and every one of us, we all bear God's image, and God longs to know us and be known.

Rob Bell makes a big thing of how God sent Christ so that could happen. Atonement theories aside <resists temptation to go all theological on you> Jesus coming means that Love Wins. Has won. What could be a more positive message?

There's more, much more. You'll have to read it for yourself. Read it with an open mind, be prepared to have your mind blown, be prepared to say 'Nah, I don't think so' and 'I'd never thought about it like that before.' Since when did we as followers of Christ have to fit into a nice little box of believing and doing things in a certain way? Some of it has left me with questions such as 'what does he think Christ died for' and wondering about where he stands with forgiveness, the whole leaving your old life behind and other such. Wondering is good though...

I'm going to end with his last paragraph, 'cos it's Cool.

'May you experience this vast, expansive, infinite, indestructible love that has been yours all along. May you discover that this love is as wide as the sky and as small as the cracks in your heart no one else knows about. And may you know, deep in your bones, that love wins.'

And who could argue with that. :)

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.