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.

28 Too Many

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

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

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

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

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...;)