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.

Grand Designs

I went along with some lovely friends to the New Wine Women's Day in Harrogate yesterday. I always love these days, they are a bit of an oasis, chance to get together with hundreds of others worshipping God and mudge over some great teaching that is practical for every day life. Yesterday's theme was 'Grand Designs', but no Kevin McCloud in sight I'm afraid (well, not.) It was about our lives all having a grand design, whoever we are, wherever we are, whatever our circumstances of. The lovely Nadine Parkinson led the first session and I loved that she described our lives as a Great Adventure. Hmmm, familiar that one :D Great though to hear my feelings about life in that way reflected by others.

I had not heard Ruth Perrin speak before but she blew me away, plus being a great speaker she made us laugh, which is always good value. Loved her take on some of the women in the bible, especially some of the more little known ones, like Joanna, Phoebe, Priscilla and Tabitha (like that name ;)) These were all ordinary women, in different life circumstances, who became extraordinary by following the call of God on their lives. They all had Great Adventures. I love that. Read their stories sometime!

I loved hearing Ness Wilson again. I had heard her speak 2 years back at New Wine summer camp and she had given me a vision, I'll have to tell you about it sometime ;) She talked about what often holds women back from being all they can be, stuff like self-doubt, self-esteem. She challenged us all to be brave and courageous. Girl power rules!

One of the most poignant parts of the day for me was hearing more about Mercy Ministries who run a residential programme for young women who have experienced difficulties with such things as self-harm, eating disorders, abuse and similar, focussing on helping mend the broken parts, delve into what is behind it all, and turn around their pictures of themselves, from broken to whole, from nothing to a beautiful woman of value. They are Christian based and do bring this into their programme, because they have found that this is what does it, that seeing themselves as God sees them can change everything. I love this video of some of the girls who have come through the programme and how their lives have been utterly changed.

Warning - get the Kleenex out!

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....