Tuesday, 16 October 2012

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...

Saturday, 1 September 2012

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....

Saturday, 4 August 2012

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 ;)

Tuesday, 15 May 2012


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.'
'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.

Monday, 30 April 2012

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.

Friday, 6 April 2012

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.

Wednesday, 14 March 2012

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.

Saturday, 18 February 2012

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. ;)

Wednesday, 4 January 2012

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.