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...

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.

Today

I’ve put up decorations today and helped the children put up and decorate the Christmas tree. I’m so thankful I’ve got enough spoons today to do this. Last week would have been a different story. Last Saturday I was miserably pondering the possibility of never being able to do anything Christmassy again with my children due to being so low on reserves and breath that it was all I could do to crawl on to the sofa and grumpily read everyone else’s Facebook comments about days out with the family, Christmas baking and craft and great parties. Everyone else was having all the fun, it seemed, and I wanted to shout at them, how dare you be enjoying yourself and doing nice things with your families when I am stuck in feeling like this and my children don’t ever seem to get the best of me?

Of course, I didn’t mean that, not really, and I didn’t write an attention seeking status update telling everyone that I felt that way and to shut up. Because really I was loving hearing about people’s days and fun and family time, and I will always want to hear that. But there is something inside that mourns the loss of such times, and as the disease progresses the times become less. I have to grab what I can with both hands and be delighted at the days I can partake in such. Today is one, which is a good thing as we are having a party later. Despite waking up feeling like today wouldn’t work it has so far. And a small thing like putting the tree up with carols in the background and children dancing around with tinsel in their hair has made me smile, has made me appreciate what I have.

I know I need to be able to deal with the possibility of having less days like this one, and finding delight in things anyway. I cannot only be happy when I feel better. My challenge is to smile on the bad days, to smile last Saturday. To be happy last Thursday when Adventure Bloke went to see the Adventurous Pair sing at the Young Voices concert in Birmingham – to smile that even though I couldn’t go, they were experiencing it anyway, and forming lovely memories.

But I’m not very good at that really. I think it’s OK to grump as well. Nobody’s perfect, after all, though of course Adventure Bloke comes close ;)

I guess I need to live for each day. Even if I can find a moment in a bad day where I see the good, it can lift me beyond myself. It’s not all about me!  One thing all this does is help me think of those who are much more poorly than me, those housebound, those on 24/7 oxygen, those not able to get out at all, and how they feel. It gives me a small glimpse into how it can be so isolating and lonely to be in this place. It inspires me to wonder what I can do to help.

Today I’ll make the most of today. And tomorrow may not be so good. But at least I got to put up the Christmas Tree with my children. At least I got to make mince pies and tut at all the glitter on the floor from their wonderful artistic creations. At least I’ll get to enjoy some mulled wine and chat to friends. At least for today. And that’s good.

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...

Why I love Brussians

I went to a meet up this weekend with a few people from the website 'Bronchiectasis R Us' which was set up a few years ago by the lovely Charlotte as a way for people suffering from this rare disease to connect and share information and support. We've been having an annual meet up for a few years now. These guys never cease to amaze me with their zest for life amidst such suffering.

You may be thinking these meet ups must be depressing, talking about illness, sharing symptoms etc. So far from it. It's a chance for us all to let go. I think that we know we can simply be ourselves with each other, because we share such a deep bond. We understand each other - we don't even need to say anything, we just need to look at each other and we know. We get it. It's like a breath of fresh air (no pun intended) Lovely family and friends are wonderful in their empathy and compassion but there is something about spending time with those going through the same as you, something liberating.

And you know, we don't sit moaning and grumbling (not too much anyway) ;) We have a giggle, mainly. There are people there who have more to contend with than 'only' bronchiectasis, they have other chronic illnesses, and yet there they are, smiling, encouraging, being there for others. I wanted to write this post as a tribute to the bravery of Brussians, and to their general attitude on life, which is positive, affirming, fun. Brussians don't go under, even with the most hideous of circumstances. Of course we all have times we scream and rant and moan and cry, but the support that comes from other members during that time is amazing, even when these others are yet again in hospital or struggling to breathe. Knowing these people has changed me, changed my outlook on this disease and you know what? I thank God for them.

So Charlotte - thankyou, thankyou and thankyou again, because you setting up this little site those years ago made many lives that little bit happier. And I am so glad I know you and the other Brussians. Sometimes I'm even grateful I am ill because of meeting you all, lovely, brave people. God bless. xxx

Strength and Self Pity

Yesterday I indulged in a nice little Pity Party, all by myself.

Adventure Bloke had come home from an hours run and had rather nice calf definition, if I may say so. But there was me, deciding that it was Not Fair that I could not go out on an hour's run and have calf definition. Because I have messed up lungs, and because yesterday was a Bad Day. I did get the Adventurous pair to the park after school, but paid the price. Breathing? Bonus!

This led to me wallowing in a bit of good old fashioned self pity. Many of you lovely people say to me that I am so strong and brave. But I'm not, really. I cry and I scream and I rant at this disease, and I don't feel very strong at all. I indulge in some envy fairly often. Last night it was envying the midwives on One Born Every Minute. You see, I would love to do that job, what an exciting place to be (I know, sad, exhausting and draining too) But I can't. So I envy their strength. Then I start envying the Adventurous Pair's teachers at school, because they are doing the job I used to do, and used to do rather well, really. Then I start envying people on the street, people at the gym, checkout people in Morrisons. Because they are strong (or seem so to my narrow view) Because they don't have screwed up lungs. Because they can work. Because they can run and have Calf Definition.

Adventure Bloke demurred my kind invitation to my Pity Party, but let me attend nevertheless. Afterwards, he hugged me, and said it was OK. I think that's kind of like God. I don't think God expects me to be calm and stoic at all times and to smile at my disease and say 'it's fine, these things come to try us.' I rather think instead that God hurts with me. That when the pain is so bad I cry that God cries too.

I have learnt that life is not fair. My parents used to tell me this a lot. And to my disgust I now use the same phraseology to my children, which annoys them just as much as it did me. But it is really not. Is life fair for those in Japan affected by the tragic events lately? Life fair for those caught in conflict in Libya? Life fair for the Mumsnetter who lost her darling 2 year old son to cancer last week?

Some say when we talk about suffering that it is God's will. But substitute that phrase for the 'is life fair' phrase in the paragraph above. Can that really be said of God? I don't think so. I don't believe God wills this stuff. But I do believe God is in it with us. My understanding is flawed and shallow and tinged with self pity. But my experience is of a God who hurts, who knows what it is like to lose a child and knows what it is like to not be able to breathe through pain. And who has done something about it.

So I'll still engage in the occasional pity party, I reckon, if only to justify chocolate eating. But then I'll remember the verse from Psalm 73: "My health fails, my spirits droop, yet God remains! He is the strength of my heart, he is mine forever."