What does it feel like to be disappointed by God?

I hear that phrase a lot. 'Disappointment with God.' There's even a book with the same title (a very good book, actually.) People often ask me if I am disappointed with God, and if I say I am not, say that I should be. And if I say that yes, today actually I am, I may get the 'oh don't worry, he has plans to prosper and not to harm' etc. I know. I've used it myself.

But thinking about it, I am just not sure disappointment with God is a construct that is helpful. Why am I disappointed with God? First and foremost, it's because I'm not healed. That's the big one - the one everyone expects me to be disappointed about and validates me feeling this way (it's OK - only natural - keep feeling that way.) But I am not sure I want to keep feeling that way, because I am not sure that I am, actually, disappointed with God.

I get disappointed I am not healed, but then when I spend any amount of time in God's presence that disappointment seems to fade and become less all consuming, and my thoughts turn away from me, and turn to contentment instead of dissatisfaction. I could spend the rest of my life deciding to live in disappointment and developing an increasingly bitter exterior. I could also spend the rest of my life trying to be healed at every possible opportunity, but you know what? That's so exhausting, dispiriting and can actually get in the way of a good relationship with God and with others - I become drained by the fact it's not happening, my disappointment begins to eat away at my love for God and I become disappointed by others too when they may try to make it about my problem or my faith or lack thereof.

Being disappointed with someone implies that we think that they have not done something in the way in which we think they should have done it, or that they have let us down in some way. To be disappointed with God, then, means that we are deciding that God should have done something another way. We are putting that box around God again, that narrowing of God whereby we forget that whole thing about God's thoughts being above ours, and all that. Are we narrowing God by being constantly disappointed?

Many writers in scripture show disappointment with God, especially in the Psalms. This fact is often cited as an excuse to be Disappointed. But we need to remember that the disappointment shown by the psalmist is usually accompanied by expectation and finally with praise. ('Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Saviour and my God.) The Psalmist has recognised that the great weight of disappointment can be balanced by the great expectation of God's work in his life.

I'm deciding to balance my own disappointment with great expectation. This doesn't mean that I am banned from the odd rant session at God Psalmist Stylee, but that I decide that my days will not be dictated by a sickening sense of being let down. Again. Instead I choose to look at God, to spend my time gazing upon God, and find that any sense of being let down is so very overwhelmed by feeling utterly loved instead. It's a much happier feeling.

This also doesn't mean that I am saying that I Give Up. I do not give up, but I do reserve the right to not Go Down To The Front every time I go to something where people are asked to Go Down To The Front. Sometimes I quite like sitting in my seat, soaking in worship, and find my healing far deeper in that than in going and endeavouring to explain, sometimes over loud music, what I would like prayer for, and then coming away again feeling a little lessened by the experience, often depending on the focus of the pray-er. I had a lovely experience last year at New Wine, where I did feel I needed to obey that nudge and get down there. After explaining, the lady didn't pray for miraculous healing or tell my pain to leave or anything like that. She prayed simply that God would come to me in my pain and do what God wanted to do. How freeing for me that was - I didn't feel obligated to feel better, like so often in these situations - I felt free to be whatever God was doing with me there and then, which was pretty fabulous actually.

I think God is so much bigger than we make out and can do so much more than we can comprehend. And that our perceptions of what God should do are not always what God chooses to do. But we can have great expectations of what God will do, whether that involves physical healing or not. I know one day I will be whole, and for now I am choosing not to be disappointed but to embrace all God has for me in the body I have today. I'll keep asking for prayer, I'll sometimes sit and be. I pray for you too today:

¹⁶ I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, ¹⁷ so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, ¹⁸ may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, ¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. ²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Amen!

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 Point Being?

We have a hamster named Bilbo.

He doesn't do very much all day, really. He sleeps a lot, and occasionally he'll have a little wander round his cage, stuff his pouches with whatever he can find and go back to bed. He might come out for a little wander round the sofa or in his ball for a while. He's not a lot of use though, frankly, he doesn't do anything much.

Except he does. He brings joy to the family. Even Adventure Bloke and I are rather smitten by this tiny rodent. The look of joy on the Adventurous Pair's faces when we brought him home was...well, Priceless. They get so much out of him - cuddling him, feeding him, cleaning him out (well, they wouldn't say they get a lot out of that particular aspect of Bilbo, but let's face it, it's all about Responsibility and Learning to care for another, and that cannot be a Bad Thing.) They love him, and wouldn't be without him.

In my darker moments I feel a bit like Bilbo as described in the first paragraph. Not a whole load of use to anyone or anything, and not doing an awful lot. What is the point of me? It's daft, but these ponderings often come more to the surface when I'm feeling a little better. It's like there's this script going on, that says 'you're doing OK, now Justify Your Existence', and I start endless guilt trips about not being productive enough and not using my education, and not even using the time I have particularly wisely (Facebook anyone?)

When I'm in the darker times of illness, I don't think like this. I don't have the energy, let alone any thought of having to justify myself. It often feels like God carries me through these times, with a level of contentment and peace that is surprising given the circumstance. It's like I know it's OK. This is how I am and this is where I am, and I don't have to do. I don't have to even be someone different, I just have to be me. And in that, God sees me a little like my children see Bilbo. He rejoices over me and wouldn't be without me. Does there need to be a point in me to God?

So why can I not carry this through to those times I feel stronger? I've had a few good weeks, I've been camping, I've been out and about and attended events and enjoyed myself. I've still tired and had to pace things, and run out of spoons on occasion, but there's been a definite shift towards stronger times. This is good! This is what I crave for in those hard times. I long for life with this kind of normality.

And then I go and beat myself up that I should be more than who I am. I'm stronger, so what am I to show for it? Why can't I simply continue in what God has provided and given for me to be?

You do not need to justify yourself, dear friends. You do not need to have a USP, or even a P at all. You are so much more than that. I can't say it enough - God loves you, unconditionally and wildly, extravagantly and often unrequietedly. (is that a word?) God doesn't love you because you have a point, because you have achieved this and that, because you run from one thing to another and are busy, even if it is all in God's name. God loves you because he made you. The Point Being there does not need to be one. Right? <shakes self>

So lets stop beating ourselves up, and get the line between acceptance and complacency right. I do not want to languish and revel in sickness or define myself by it, and neither do I want to make it the reason I don't push myself or challenge myself. But I do want to keep reminding myself that I need not justify myself.

May you have the confidence to be who you are created to be, to be your beautiful and meaningful self, and yet to reach out and keep straining toward the goal.

and stop worrying about what others think of you

Leaning

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With thanks to the amazing David Crowder Band.

 

If ...

If. If I was well.

If I was well I would go swimming with my children every single week. I would tell them stories every night and play games with them every day. I would chase them round the house and dance round the living room to Strictly with them. If.

If I was well I would earn money. I would earn enough money to be able to go on adventure holidays abroad. If I was well I would take them to Disneyland and queue for hours for all the rides and walk around the park all day with them. If.

If I was well I would have 2 labradors and go for long walks every day. I would climb hills again on family holidays and see the view from the top of Great Rigg once again. I’d run into the sea with them and play surfing. If.

If I was well I would run community groups. I’d PTA and governor and organise. I’d go on cub camps. I’d say yes to so much more and I’d be reliable. If.

If I was well I might take up running. Or faster swimming. I might go to Zumba. That would be fun. I’d take up dancing again. Rock and Roll was my favourite. I’d make a life of fun and laughter. If.

If I was well I would go in a church of a more high tradition and be able to stay when they burned incense. I’d be able to go along to cold churches and not scupper off home. I’d be on all the committees and make lots of decisions. If.

If I was well I would be busy.

But I am not. I am ill, and I cannot do those things, at least not on any regular basis. So. I am ill, but when I go swimming with my children, it is a joy and a pleasure, a treat. When I tell them stories at night they are delighted and tell me how much they love that time, and how they wish it could be every night. When we play games it helps us all appreciate how things can be so good even when things are bad.

When my children ask about foreign holidays and iPads I tell them how much more important love is. How all the money in the world would not make me love them more. Because I am ill my children are turning into compassionate and empathetic people. 

When my children long for me to run into the sea with them they have learned to love it when I sit on the beach and watch them. Making memories of being with them. It is enough.

Because I cannot be on a thousand committees I have time to be. Just me, just who I am. Not what I do. I am teaching my children their value lies in their own selves and in who God made them to be. I am teaching my children that we don’t need to find worth in activity. I am teaching myself this, on a daily basis.

Because I am not reliable maybe I am helping others see beyond people as objects, as how useful they are. Maybe, hopefully, in some small way I am helping people to see people as valued individuals.

One day  I will climb hills again and see the view from the top of Great Rigg in the sunshine. In the hope of such, joy and laughter is not banished from a life where such things cannot be achieved at present. Because of hope, there is joy. ‘Weeping may last for a night, but joy comes in the morning.’ And in the mourning?

Because I cannot go in some churches or be on some committees maybe I am doing my bit to dispel the Vicar’s Wife myth. Perhaps it is good for people to see we are not all of a mould, and not all there to be available at all times for all activities. 

Because I am not busy, I am free to be who I was supposed to be.

Because I am not busy, I am free.

And in freedom, the ‘if’ becomes redundant, becomes empty. There is no need for an ‘if’ in this life, if we can embrace the hope and the value of knowing God, and understand the reality of who we are in God.

I still have If days though. I like being honest with you.  And on that note, lets face it, I wouldn’t really do all those things even if I was well. Board games every day? Swimming every week? Um...nope. :D I like to dream, though, and believe in the higher possibilities...

Paralympics Meanderings

How fabulous are the Paralympics?

I love seeing how the athletes have worked so hard and triumphed over such adversity. They are inspirational. It's quite staggering to see how far some of them have come in their lives and their sport. And - well, they're fantastic athletes.

However, there is something of a backlash amongst the disabled and chronically sick community, especially as regards to one of the Paralympic sponsors, Atos Healthcare. One has to wonder why a company that has a £112 million contract to assess sick and disabled people for DLA and ESA, yet costs the taxpayer £60 million in appeals against decisions, 40% of which are successful, have been allowed to sponsor such an event. Especially considering the fact that many of the athletes making up TeamGB will have relied on Disability Living Allowance throughout their lives in order to do what they have done and become the athletes they have succeeded in becoming.

DLA is not an out of work benefit, it is a benefit helping disabled people to live lives with some possibility of fulness, not to mention to keep them alive. Disabled and chronically sick people need extra money just to keep existing with their disabilities. Transport, heating, technical aids, carers. The list goes on. And yet Atos have been tasked with assessing people on this benefit - even those given a lifelong award, with doctors' support - with the end view of reducing it by 20%. Even though fraud rate has been assessed at around 0.5%. Figures don't add up? Go figure....

I'll post a video explaining it more, for those who are interested. This video explains Atos' role more clearly, against the backdrop of a protest by disabled people that took place yesterday.

Equally concerning me in all this, and running throughout it, is the attitudes being fostered towards sick and disabled people. While it's great to comment on how the athletes have come through difficult situations and achieved incredible goals, there is an underlying rhetoric taking place which fits nicely with Atos' seeming aims. Basically, that disabled people can achieve such things, so if you're not, you're not trying hard enough. You're so much use, you're a scrounger, because you haven't given it your all, like these people, you haven't triumphed over your own personal adversity. You're sick: So what? So are they!

It's a worrying trend which is intensifying through society, from welfare cuts to newspaper articles. But think about it. You wouldn't think this about an able bodied, healthy person, that because they weren't running like Mo Farah they weren't trying hard enough? It's scary when you feel judged on being ill and judged even more on not trying hard enough to not be ill. Or to be fabulous anyway, within your illness.

I sometimes wonder if this attitude is somewhat prevalent in the church, too. The whole 'pull up your socks and get on with it' thing. Amidst praising the triumphant, we need to remember those who, for whatever reason, simply cannot triumph, or at least triumph in the way we may want them to. Remember those who are too sick to work, and even too sick to go out, and who are stuck there, and no amount of talking up what people 'can' do as opposed to 'cannot' will help them be able to. It also leads into the whole area of usefulness and uselessness. Seeing reports of such bravery can be very inspirational and can encourage someone to go for it; but we need to remember that for some it simply feeds into their own sense of uselessness. I will never be able to do something like this, I will never be able to work, I will never be able to contribute. I am useless.

I've had times of thinking like this (still do, on a fairly regular basis) and know how it is to be trapped in a body that simply won't. Simply won't ever be a body of an athlete, whatever I do, however hard I try. It's not possible for me. But does that make me of lesser worth than the athlete? Society is at risk of beginning to categorise sick and disabled people: Those who can, those who can't, those who won't, those who are worthless. Does church do that too?

I know someone who doesn't....

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 ;)

Honesty

So, after my last blog post here which seemed to resonate with quite a few people (so many thanks, as ever, for all the messages, encouragements, etc etc...) I decided that I would practise what I preached, and be Honest.

So when someone, even a random someone I hardly knew, asked how I was, I wouldn't say 'fine' or 'oh yes, great, you know, well..' and other fluffy such downright lies. I'd say 'Not fine' 'not OK' or 'OK ish but had a pretty appalling week' etc etc. Or if I felt good, would say I felt good, and how good it was to feel good, and how I was loving the moment.

Responses to this have been interesting, surprising and generally encouraging. Even the conversation with the random slightly-known. I have found, that if I am honest, conversation can then lead to more than it usually does with the whole 'how are you? -fine, you? Oh, fine' <nervously fiddles with phone, smiles and sees friend in corner that one 'must' have a word with> .

Here's how one went.
'How are you?'
'I'm not too OK, actually.'
'Oh?'
'Yes, I am struggling this week with my lung disease'.
'Oh, I'm sorry. It must be really difficult. How do you keep going?'
'I have a lot to be thankful for. I'm not dreadful. But it is hard.'
'My mum feels like that. She feels she can't cope sometimes. It's hard and so frustrating for her.'

<and so on. Situation slightly changed, but this is one example of how my honesty resolution turned a mundane greeting into something more of a relationship developing conversation.>

I cannot claim this is always the case. There are those, I know, who will be thinking 'there she goes, whinging again' and would by far prefer me to say 'fine'. I know this by their slightly cold response and their quick spotting of said-friend-in-corner. But I reckon the honesty resolution pays off. And it's more honest.

I don't think I will always use it. I have to say there are those times when 'fine' suffices. The person trying to sell me double glazing doesn't need to know the ins and outs of my life and my struggle. <or maybe it would send them away more speedily?>

But I think I'll keep giving it a go. Those of you who know me in RL, feel free to challenge me on this, and tell me off. I know you will.

Dear Nice Person......

Dear nice friendly person:

No, I don't feel fine. Thankyou for saying I am looking really well. I know that you are only trying to be kind and upbuilding. Unfortunately it reminds me of the fact that even when I feel sick people think I'm doing well, and therefore I must be putting it on.I know this is not the case, but I think it anyway.
I am sorry, nice friendly person, that I am not talking much back to you. It is kind of you to ask me all about things I am up to in my life and work but I am using my last bit of energy to breathe at the moment. I am not being rude to you, I would love to talk more, and feel so awful that I must be giving the impression of someone totally disinterested and ungrateful. Inside I feel sad. But I cannot form the words, today they are too tiring. Please read the Spoon Theory - you may get a glimpse of how it is. For now though, I wish I could say this to you. Be honest. But I smile, say I'm fine, and attempt to eke out a few words in response to your kindness. I then go, leaving you feeling like I'm pretty unfriendly. I am sorry. If you got to know me, you'd realise I'm quite nice really.

Dear lovely friend:

I'm sorry I couldn't hold a coherent conversation with you on the phone. I love chatting with you but worry you must think I don't want to be bothered with you, can't wait to get off the phone. I'm sorry. My pain is making it difficult to talk and draining energy for chat, and the drugs addle me somewhat. I'd love to have a good long girlie chat, but today I cannot. It's not you, it's me, and all that.

Dear Daughter and Daughter's friends:

I'm delighted you are having fun together today. I would love to be up and about making cakes for you and giving you drinks and making you feel welcome and at home. I am so sorry I'm huddled on the sofa under a blanket looking pretty rank. I worry about your impressions of me. I shouldn't. I wish, DD, that I could be a better Mum for you.

Dear Son:

I'd love to play games with you all day. I wonder if you think I don't care very much about you sometimes, when you've asked me and I've yet again said no. And when you've asked me for a story and I've said not tonight. Tonight I just haven't got the breath, DS. I love you so much and wish I could do more for you and with you. I'll read that story soon.

Dear Random Stranger:

Please don't ask me what I do, or suggest what I could do. OK? Thanks. :)

Dear Adventure Bloke:

I am so grateful I never have to pretend with you, or apologise for being ill. Not that I'd get away with such antics.

Dear God:

Thanks that you know all these things and all these thoughts and all these feelings. And I never have to pretend with you. And I know you're always with me.

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.

Those who 'just get on with it'...

So, this phrase has been vexing me somewhat lately. I'm not entirely sure why, but here's the thing:

'<insert name here> is so inspirational, you know. She is one of those people who just get on with it, you know, even when she has proper flu. She doesn't let it get her down.'

And there's that dreadful ad. Can't even remember what it is advertising, some overpriced and ineffective cold remedy, I believe. The one that extols the virtues of 'people who just get on with it', while showing a woman with a sniffle buying food, or some such getting-on-with-it-ness.

Now I think the problem for me in this is the implications about those who don't get on with it. Those who let it all get on top of them, those who stop, those who buckle under a little. It would be fine if this phrase was only bandied around about the usually well, but when it is applied to those who have long term conditions, it can all get a bit upsetting and in some cases intimidating.

You're doing your best to function, to fight through the pain, the never ending side effects, infection, exhaustion and whatever else, and you're having a bad day/week/month/year. You need to sit back and take it easy, to NOT 'just get on with it'. But you're bombarded by images and accolades of people doing just that, and how very inspirational they are. They don't let it get them down, they don't let it beat them. So if you do, you're pretty hopeless really aren't you.

OK, so I realise not every person is saying or thinking this. But it's more common I think than we could imagine. What I want to say is that you don't have to be inspirational today. You can stay inside, let life carry on and just cope. You can just be. And that does not mean you are in any sense worthless, useless or any other type of less. It simply means that you are hurting, you are human and you are taking time that you need to look after yourself. There may come a time when 'getting on with it' is better for you than not, and I am the first to say that a little activism can be a good and healing thing, but there is the time when it is just not. And that is OK.

The problem is, our society is throwing out ever more widely messages about what use someone is to society as a whole. Today I have read a report which says that workfare will be extended to people on ESA, and not only extended, but in fact people will be forced into unpaid work for an indefinite period - as opposed to normal workfare rules which put people into short term employment. What does this say about attitudes to disabled people? They are not worth very much as it is, so better make them more productive? Even if that work is unpaid? Now, many people with chronic conditions and disabilities find that working enhances their lives very much and I am in full favour of such for those able to do so and supported by their employers, but this new stipulation is somehow more sinister and has undertones of the whole 'drain on society' label applied by some. It's a scary world out there if you're ill.

What does God think, I wonder? Does God think people should just get on with it and should be productive and useful to society? Or does God just, actually, Love?

So I want to encourage you, all my friends who struggle with ill health of any description, to give yourselves a break. And to feel free to throw something at the TV when you next see the advert with that poor woman with the little sniffle who Just Gets On With It. ;)

New Year - New Hopes

This is me at the beginning of 2012. Not the best start, possibly, to my fortieth year on earth? In some ways, not really. But in others, perhaps I can see it as the best start, because if this lot works well I may feel better than I've done in months and months, and that is a hope I am reaching for right now. I may be somewhat naive, I know myself what I am like and how often I suddenly fall, even when having a 'well' time, but I still want to hope. I suppose if I didn't have that to reach for things would look much worse and maybe I wouldn't even get as better as I could do. Maybe. So I'll keep hoping for healthier times.

I'd love to get some exercise this year, if I could. Early last year my physio put me on a pulmonary rehab course which I found so helpful. It wasn't the most rigorous of exercise and you weren't going to break any records, form any muscles or lose much weight, but it was the whole thing I think of starting to take some control again of your body when it had been so battered. I love the thought of being able to do that once again. Until the next battering, I suppose...but I won't give up, and stop. I might even get out that dusty Wii fit...

A big hope for me this year is that I will finally write my first book. It's been forming for a long time now, and I think I just need to go for it in order for it to come together. Themes of healing, the church and disability, wholeness/'usefulness', all that kind of stuff. I'm excited about starting.

And then of course there is our work here in Priorslee....I'm excited about what this year will bring.

So bring it on - good and bad. And hopefully I'll not need those IVs again soon.

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.

Days Like These

So, what do I do with days like these?

Today is officially our Day Off, so I am officially allowed to relax. I also seem to have picked up a chest infection and feel that slight run-over-by-a-bus sensation, so that kind of puts a dampener on stuff like going out for lunch or mucking around the garden.

So why do I feel slightly guilty about....ahem....doing Nothing? I am poorly, but not poorly enough to be utterly laid out. If that was so, I would be nowhere near this puter. I am in an in-betweeny stage of poorliness, which is very annoying. There's a part of me telling me that I should be Being Productive, and not in the physio sense (Brussians will get this) But the other part saying chill, it's OK to Mumsnet all day, it's OK to watch rubbish daytime TV and it's OK to download more books onto my Kindle.

So on days like these, I need to find a way of being that doesn't make me feel bad about not doing stuff like starting to be Pioneer-ish. On days like these, perhaps it's OK to say that I have few spoons, so I will watch This Morning, drink tea and Be Happy.

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?