An undersupply of spoons

How many spoons in the drawer today? It's not a question I've had to ask for some time: how much energy I actually have, how much energy will living an ordinary day will take? Unfortunately today is one of the first days in over a year that I have had to count spoons, and felt that I had a significant undersupply - I opened the drawer, and the drawer was more than half empty. 

The annoying thing is that it is a beautiful day outside and I don't have enough spoons to enjoy it the way I want to. I got quite a lot of weeding done yesterday and I'd planned to do some more today but today it's not going to be possible.

Wagner and das land

I have just been reading my brother's blog about his recent foray into Wagner's Ring Cycle, with the BBC Proms. Sounds like it was completely amazing, and I am so jealous that he got to hear Bryn Terfel live. He did the complete Ring, which is pretty cool. I have to admit that I have only heard parts of the cycle, but what I have heard I like. Maybe I'll have to look up a good recording and have a listen to more of it.

However, on the other side of the globe, things have been a little interesting. Last night we were  rudely awoken by an earthquake around 1am, followed by another 6 quakes until about 2.30am.... They were fairly small but the epicentres were just 1km from our house, and only 5km deep. By the time we'd had the 5th one small daughter was so unnerved she wanted to stay in our bed (which I can't blame her for!). They were extremely noisy - in fact, I was woken by the first one and was trying to figure out where the truck was driving when the shaking started! So we ended up all of us sleeping in our queen bed, and the cat, not to be outdone, came to join us too... We all did get some sleep but it wasn't the most restful night I've ever had. Fortunately I was working from Rotorua this morning so didn't have to deal with the drive over to site.

This week has been a very busy one with a major audit on Tuesday and Wednesday. I've been preparing for this for months now, and particularly over the last few weeks it's been taking up a lot of my time. In the end it went pretty well, which pleased me (and my boss). I was concerned that my lack of spoons from the weekend/Monday may have made it difficult when it came to the site walkthrough on Wednesday, but I did okay in the end. I must admit that I came home on Tuesday and didn't want to talk to anyone (other than hubby and small daughter), after spending all day answering questions from the auditors! Long meetings are stressful when you're an introvert and an audit makes it worse. I am very grateful it's the weekend!

It's also been an interesting week in terms of the year too. Two feasts and a memorial in a row, with St Monica, St Augustine, and the Beheading of John the Baptist back to back. I don't know a lot about Monica, except she was Augustine's mum, but Augustine I know more of. The readings for vigils were from the Confessions and they were really gorgeous - from his investigations and meditations on the One Beauty. I have to confess I've never finished the Confessions - I did read quite a bit of them in patches when I was studying, and an awful lot of his theology, but I never did the Confessions from start to finish, although I did try. This makes me wonder whether it wasn't the right time for them then but it may be time for another go? And John the Baptist: I know it's the wrong image but I always think of Allori's Judith with the head of Holofernes when I think of this event. But also as forerunner, beginning, cousin, friend, torch, Elijah Mk 2... It was a bit of a relief to return to ordinary Ordinary Time today.

A Kiwi in kiwifruit country

It's Saturday. I am slowly recovering from a deficit of spoons this week - it was an extremely busy week and by the time I got to the end of Thursday I was in deficit. Friday was tough: by the time I left for work I was scared I was going to fall asleep in the car on the way over to work....

However, today was better. A good sleep and a relaxing time with the family has helped a lot. We went through to Te Puke (about half an hour from here) and did the kiwifruit tour at Kiwi360, which was fascinating. Very interesting to look around a working kiwifruit orchard. I didn't realise that a new kiwifruit vine grows at up to 15cm every day! They have had to graft completely new golden kiwifruit varietals to help combat the PSA bacteria - hopefully they take. The other really amazing thing was that last season they harvested over 105 million trays of kiwifruit in the Bay of Plenty. Wow!!

I was also interested to hear that they harvest once a year but export all year round. The way they manage that is by measuring the brix value of the fruit - when it gets to a certain point they harvest, then the pack the fruit and store it under partial vacuum in coolstores, which holds the ripening process in limbo until they are warmed up again. The coolstore is only opened when it is ready to be shipped. This way they can export year-round. Very clever.

The tour also went past fruit trees of just about everything you could name - part of the tour path was an experimental area to find out what would grow in Te Puke, and the answer is everything! We saw oranges, lemons, lemonade (looks a bit like a lemon but really sweet), tangelos, plums, cherries, apricots, persimmons, white mulberry, nashi, ugli, lots of different apples, and a whole lot of others I can't remember. The tour guide kept stopping the little cart every few metres and giving us something else to try.... The lemonades were particularly lovely.

The tour ended with kiwifruit tasting, kiwifruit juice, kiwifruit jam (not as good as my kiwifruit jam, I have to say), kiwifruit wine, kiwifruit liqueur - you name it, we tried it. And some local manuka-rewarewa honey too, which was particularly good.

I wasn't originally planning to go, but I'm glad I did. It was really interesting and it was a lovely relaxing day with my two favourite people. We stopped at one of those ubiquitious roadside fruit vendors just out of Te Puke and got some golden kiwifruit (biggest I've ever seen too!) tamarillos (yum), and fresh fruit icecreams. And now it's Saturday night, cat snoozing by the fire, and the Bledisloe Cup test tonight. Delayed coverage so not checking Facebook or Stuff to make sure I don't find out who wins! Go the mighty All Blacks!

Spooning around

One of my friends on Facebook posted a link today to a story that had me completely stunned. I'm not one usually for reposting (unless there's a seriously good reason) and I haven't reposted this story on FB, but I want to link to it here.

It's a story of a young woman with a chronic illness, trying to explain to her best friend what it's like to live and manage. It's an issue close to my heart because I live and manage endometriosis (new research recently released agrees with us that there is no cure and it will return), and the particular story is also close to home for another reason.

It's called The Spoon Theory. Please read it. It is the best explanation of what lives are like for people with chronic illness or pain I've ever read. Fortunately at present my supply of spoons is reasonably good, but who knows what tomorrow may bring?

Autumn days

This weekend has been a pretty relaxed one. I had some kind of nasty bug thing on Friday so after calling in sick I ended up sleeping almost the entire day (very unusual for me). I was starting to feel a bit better on Saturday although still planning to take it quietly. Small daughter and I went on a bit of a shopping trip for her: time for new shoes and slippers after her current ones literally fell apart on her feet. We also found some small drinking glasses that are a good size for her hand, as she's quite keen to start using "big glasses" (as opposed to plastic) and "big knives and forks". At nearly 7 this is a fair request but we only had one small glass left from a set some years ago and everything else was too big for her to hold.

We went pineconing on Saturday afternoon in Redwoods, which was a whole heap of fun. Small daughter and I did this last year and got about a laundry basket-ful of pinecones for the fire. This year hubby came too and we had so much fun looking for pinecones, finding pinecones, trying not to get snared in rogue raspberry canes, finding more pinecones, walking too and from the car with bags of pinecones - fortunately it's flat and easy walking, not like the near-vertical place we used to pinecone up the back of Thorndon in Wellington when I was a girl! We got a good big lot, and I'm sure we'll do it again during autumn while the pinecones are still dry. It was a nice, gentle walk with the added bonus of looking and finding things for the fire.

The change in the weather is definitely noticeable now: daylight saving finished last night and the nights have suddenly got cold in the last couple of weeks. I got the duvet inners aired today and both inners went back onto both beds (in summer we use only the lightweight one on each bed) because we've all noticed the colder nights! However, it's still very very dry: we've had a couple of days of rain, not enough to break the drought. There is colour on the paddocks again but the water table is still extremely low and our fire danger seems permanently stuck at "extreme".

Today was a lovely relaxed day too. We had some more sunshine (although there was a definite nip behind the sun and jerseys were necessary in the shade). We had lunch with some friends from church, then back to another part of Redwoods for a gentle wander and chat. Dinner was a good big hunk of corned beef with all the usual veges - the return of hearty autumn food. And corned beef was always my favourite!

It's hard to believe that we've nearly been here a year. We arrived on the 17th of April last year, just after Easter (which was later last year). It's gone very fast.

Life and other plans

I remember in the lovely movie Mr Holland's Opus there was a quote from John Lennon's "Beautiful Boy" to the effect that "Life is what happens to you while you're busy making other plans." I've never been a serious Beatles devotee but like quite a few Lennon songs, and this quote has stayed with me for a long time.

Friday felt a lot like that quote. I arrived home from work to find that hubby and small daughter had decided that they had had enough of the nasty yellow wallpaper that has "decorated" our living room since we bought this house, and had torn it all down, preparatory to hubby beginning to prep it for painting. So I'm sitting in the living room for what's probably the last time for a few weeks looking at the stripped walls - tomorrow we will be moving some of the lounge suite into the dining room along with the TV (ugh - don't do TV in the dining room but no choice here), while the rest of the furniture is wrapped and moved to allow room for decorating. Goodbye peace, hello chaos! It always amazes me how chaos in one room manages to spread throughout the house.... I will do my best to contain it but we've been here before - at least it will be worth it when we're finished. No more hideous yellow peeling paper. No more even more hideous 70s brown pendant lightshades (ewwww). No more nasty brown fire surround (I've already painted this storm-grey and it looks amazing).

Thinking about life and other plans has also got me thinking about the way that things interrupt our tidy plans. Earlier this week, I spoke to someone who had discovered that a close family member has been diagnosed with cancer in multiple locations. The prognosis is pretty grim. Their whole world, their plans, their tidy lives, have been disrupted, destroyed, by the news. Life interrupted their other plans. There wasn't much I could do except pray, and help out where possible.

I felt this interruption myself slightly this week. I had another one of the interminable tests - an EEG this time (mostly to rule out unpleasant possibilities that the doctors don't think are that likely) - but lurking behind my cheerful chat with the tech who ran the test was the fear that there would indeed be something nasty that would interrupt life even more than usual.

It brings me back to an old, old custom I used to see occasionally (and very rarely still see written) - the initials D.V. after someone outlines a plan or an idea. Deus Volt, if God wills - the Arabic equivalent is Inshallah - we plan, we have ideas, we go where we think we are supposed to, but all of it rests only and totally in the hands of God. I know this in myself: dealing with chronic pain, one of the things I have had to learn is to work within my strength: not the strength of the good days, but the strength of the bad ones, so that I can slowly help myself build up my stamina and work within my capabilities - including not tiring myself too much so that I have a bad day after a good one....!

I am planning my work year and getting things done. But I know that whatever plans I have made, God has better ones, and sometimes my plans may not line up. I pray that they do - I pray and I work and I hope - but I wait and see. On this day when we remember the Presentation of the baby Jesus in the temple, Simeon took the baby in his arms and outlined God's plan that Jesus be a light to the Gentiles and the glory of his people Israel. I hope that whatever plans I make bring a light and God's glory, whatever and wherever I am. Deus Volt.

Sunshine, paint, and starlight

This has been a good week. I started back at work on Monday, which would not normally be an opportunity for rejoicing, meaning as it does that the holidays are over! We had a good holiday, including a trip back down to Wellington to catch up with those friends and family who had not fled the place in search of kinder weather! But I digress. This week was a good one. As most of the plant isn't back yet (it's only the maintenance/engineering staff, the financial staff, and me on site right now) the place feels completely laid back and chilled out. I've been loving that we've been hanging out for morning and afternoon teas and actually talking, laughing, and just having some fun. Also finishing a bit earlier than usual most days because it's pretty quiet right now. I'm spending my time planning my year in safety and getting things ready for the big re-induction days that happen at the end of the month. I am bound and determined to be organised this year! It was tough coming into the plant in April when things were going full swing without the time to plan things to run the way I wanted them to.

I'm also getting to be a bit of a socialite at present. I'm family-free for a few days as small daughter has gone with hubby back to Wellington to see grandparents that were in the UK when we were down after Christmas, and hubby is on a photoshoot for a week. So on Friday night I went to the pub with a friend from work (yes, me in a pub, now don't all die of shock!) - nice just to sit and chat about stuff and have some fun together. He went home and I wandered off to see the movie version of Les Miserables which had just opened in Rotorua. One soggy hankerchief later..... I was very very impressed with Hugh Jackman as Jean Valjean, and Anne Hathaway's Fantine was beautifully done. I had been pretty sceptical that they could make it work as a movie, having seen the stage show twice and adore the music (most of which I've sung at various times), but I was wrong. It works, wonderfully well. Also lovely to see the very first stage Valjean, Colm Wilkinson, getting a cameo as the Bishop who gives Valjean his chance.

Today was a really good day too: began with a hot stone massage (new to me!) at Rotorua Health and Spa, which I'd picked up off GrabOne just before Christmas. Very relaxing and I felt pretty good afterwards. I was a bit worried whether I would be able to lie on my tummy long enough, but didn't seem to have too many issues which was nice.

This afternoon was spent sanding and painting a small bedside cabinet that used to be mine, but now belongs to small daughter. Hubby has recently redecorated her bedroom (when we moved up here, we promised her that her room would be the first one we would do). It's all light blue, with a frieze of tropical fish and coral (similar to but nicer than the one she had in Wellington), and the room had built-in furniture that we've painted quite a bright, strong, primary blue. She has been using a chest of drawers that used to be my brother's, and a bedside that was mine when I was a girl. We hadn't done anything with them before, but this time we've painted them the same bright primary blue as the built-in stuff. She went away with all the furniture done except this bedside cabinet (which was a tired, grotty white - well, it's 23 years old!) - she'll come home to find it finished. Felt good to set up a little surprise for her!

Tonight after tea I went for a walk at one of my favourite spots around here, the lovely Hamurana Springs. The sun was low and the light through the redwood grove was incredible: warm, golden, making stripes and shadows, the redwoods almost purplish with brilliant leaves. First time I've actually wanted to have a camera to hand! I could watch the springs for hours: it seems amazing to think that 4.5 million litres of water come up from that spring every hour! It's so deceptive too: there's no gushing water, no waterfalls, only this silent lazy movement of the water that almost doesn't look like it's moving at all.... but it is.

And the crowning glory of the day was discovering tonight that one of my favourite authors, Laini Taylor, has just released Days of Blood and Starlight, the sequel to the quite spectacularly wonderful Daughter of Smoke and Bone. Daughter was one of the most original books I'd read in many years, gorgeously written, with a twist in the tail that I would never have picked in a million million years. I love being surprised that way. I found it quite by chance in a bookshop last year, loved the title, read the first page, and walked straight to the counter - and I don't recall anything else of what I did over the next few days outside finishing the book. Absolutely compulsive read, and the reviews of the sequel sound as though this one is even better. Cannot wait for it to arrive from The Book Depository - rather faster (and generally cheaper!) than waiting for it to come out in NZ.

Of course, even in the lovely Bay of Plenty sunshine there are a few shadows lurking. There's been a fair amount of pain, which the massage and a long soak on Thursday night at the Polynesian Spa has helped a little, but I'm trying to stay positive and hopeful that we can find something that will give longterm relief, or at least a way forward for managing it. But I'll not darken this cheerful post with the other side of the coin too much tonight....

The Third Sunday: Gaudete!

Third Sunday of Advent: Gaudete Sunday. The cry of John the Baptist struck me particularly today. I can't remember how often I have heard this and read it, but like all things of faith, it became fresh again when I needed to hear it. "I baptise you with water ... He will baptise you with the Holy Spirit and with fire." Funny how I never figured out before today that if we're being baptised with fire, presumably that means we will get burnt, and burns hurt. The liturgy of today talked about a baptism of suffering and repentance - not presuming that everyone is supposed to hurt, but that hurts will come in life, and it's how we deal with them that matters. If we let ourselves get all bitter and twisted up by them, looking always for vengeance and retribution, we will end up hurting ourselves and others. If we let it go, repent, turn away from the need for revenge, we will find peace.

Reflecting on this in my current state of pain is interesting. I didn't ask for this. I didn't want it. But I know it has changed me. I think I am a bit more compassionate to others in pain now because I have had pain of my own. I understand weakness from my own weakness. I understand the shame and humiliation of a chronic illness from the depths of my own; the longing for healing and the despair and darkness that go hand in hand with pain - but the need, the absolute need, to hold on to faith - faith for a healing, but also faith just simply to live each day, to go on, to keep walking, keep hoping, even if the hope is a very tiny one. Even if the hope is for a good death, like those friends I had in the hospice who were hoping to die well. Momento mori.

We lit today's candle for the love we share and the love that enfolds us, but the love that wants us to grow up and won't protect us from the pain of the fire, because we will be stronger for the journey because of it.

The valley

Last time I wrote everything was looking up. I was about 6 weeks post surgery, had the final surgical signoff from my surgeon, energy was returning and I was enjoying being back at work.

How things change.

Healing from surgery has continued but quality of life hasn't. I seem to have entered one of those terrible acute times, such as I haven't had for probably 8 years or more, certainly since small daughter was born over 6 years ago and I had mirena #1. So what went wrong? I haven't the faintest idea really: all I know is that that terrible, chronic pain has returned, the kind that grabs me right down deep in my abdomen and savages me like a lion over a kill. What's worse is that I appear to have had a bad reaction to the major medication my surgeon gave me, the one that was supposed to reprogramme my brain about chronic pain. Hubby and I can date the increase in fainting and the dissocation of this from pain squarely to when this drug got to full strength in my system, and it had got to the point when there wasn't a day going by when I wasn't severely dizzy or blacking out. Horribly embarrassing and really getting in the way of life.

But now, guess what? The pain is back (because I'm carefully stepping off the pain meds - carefully and slowly under medical supervision because the side-effects of stopping can be awful), and I seem to be existing on a diet of strong painkillers. Thank God, no trips to hospital for morphine yet but suspect it's only a matter of time. Nearly needed one on Monday night: hubby and I were watching the end of The Lord of the Rings: Return of the King in preparation for release of The Hobbit: An unexpected journey when the pain hit me hard - got to a 9/10 on my personal pain scale. Not fun. I told hubby that if my selection of prescribed painkillers didn't work within 15 minutes I needed a trip in the ambulance - he would have had to stay behind because it was late and small daughter was asleep.

My doctor had told me not to drive while coming off the meds and so my boss picked me up on the way through on Tuesday morning: I nearly didn't go because of the night before but I had no way of getting hold of him to tell him not to divert because he has no mobile reception at his place and I didn't think he'd appreciate a call at 5.30am waking all the rugrats! I went in, slightly uneasy about what the day would hold: and rightly so - the pain hit me again mid-morning and plastered me over the floor. My poor friend who has helped me so often this year got another one of those panicked texts and he found me again - this time though it was because of the pain not the drugs. I think I scared him this time: he's never seen me really sore and it got to an 8.5/10. I suspect I very nearly broke his hand when the highest pain peak came. The national safety manager (my dotted-line report) happened to be on site on Tuesday and fortunately I'd just spent a few minutes filling him in on how bad it had become before we went into the ops meeting that I had to leave because the pain had got unbearable, and then he came in when I was busy breaking my friend's hand, so he knows what it's like too. As much as anyone can who is outside of it.

I have spent most of this week working from home, since the unfortunate pain/fainting episode on Tuesday. I have an appointment with a pain specialist here in Rotorua on Monday and I hope he has some answers, or at least some ideas. At present I need a huge cocktail of painkillers just to get out of bed in the mornings and I am struggling mentally too. Mornings and mid-afternoons are worst. In between I can more or less function and manage to get some work done. Work has been amazing: I was really worried that they would figure out that having me there was actually a risk for them, but when I finally broke and confessed that fear to my boss and my friend (who's part of the management team with me) they both said that there was nothing to worry about there.

What bothers me most is that I seem to be running out of options. My surgeon in Hamilton discharged me saying that there was nothing more he could do for me surgically, but left me on this medication that has messed me up. All my other surgeons were hugely supportive all the time: they did surgery but it was secondary to the long-term management options. I'm not sure whether he's into long-term management but he's left me in a huge mess because he's discharged me without making sure that I'm actually doing okay. Which I'm not. I don't know whether the pain specialist can manage the other issues around hormonal changes/endometriosis or whether he's just pain - but I do need him and hope he's got some new ideas for dealing with the pain because I'm very nearly at the end of my tether. My GP has been wonderfully supportive: she's referred me all over the place and she's managing my withdrawal off the chronic pain meds. The issue there is that if I come off too fast it could trigger some extremely unpleasant and dangerous effects; and as I come off the pain increases. Lose-Lose.

Hubby is looking pretty tired too: it's always hard on him because he knows there is nothing he can do and he just has to sit by and watch, and get his hand broken. Or so he thinks: his support means more to me than I can say but it's hard because this messes with my moods and emotions too, so I get down very quickly. I wish there was a way out of this. I am trying not to hope too much for Monday's appointment with the pain specialist but even a reduction of 30% in the pain level would help a lot. At least it might make me functional, mostly. Less drugs washing around would be nice too....


I rang an old friend of mine to talk things over with last night because hubby and I have been chewing it over until we're both sick of it, and my body/mind is so messed up it's hard to think straight anyway. My friend had a couple of good ideas and anyway it was just nice to talk to someone who's known me for ages and ages (longer than I've known hubby), who's seen the acute and chronic phases and knows how much they hurt - and who just cares and is happy to let me unload some of the stuff in my head. The Community knows too, and one of the Brothers that I am particularly close to knows the whole lot - I dumped on him too. He knows about chronic pain because he's got it too - he had heart surgery just after I transferred my Profession (although we'd been talking for months before that so I knew him quite well by then) and we've grown very close over the years.

Thank God for my holding cross: it's a fairly solid chunk of rimu shaped to fit my hand, made personally for me by an old friend from St James' who is now dead. It lives in my pocket and I love holding and praying with it for other reasons, but it's amazing when I'm in pain: a rosary would smash with the force that I grip this thing with and yet it's fine.

We hold hands

I realised tonight that it is nearly 2 months since I last posted here. Apologies, dear readers! There is a reason....

My last post identified that I was about to undergo major surgery and that I had a very short time to prepare for it. I was feeling extremely unwell during those last few days leading up to the surgery - I think I fainted about 3 times that week and lost a day or two in hospital. The surgery itself was done in Hamilton, about 1.5 hours from here, and I was in for about four days - the drive home from Hamilton was one of the least pleasant trips I've ever had!

I had a month of working from home as and when I could - my colleagues got used to getting email from me with very odd timestamps, because I did what I could as I had the strength to do it. Fortunately a lot of what I had to do could be done at home, and I was able to do short stints on site after a couple of weeks (with hubby playing chauffeur!). I got my final surgical clearance this week just gone and am now starting to get back into full hours at work. My stamina still isn't wonderful but I manage that as best as possible.

All of this has caused some interesting reflections. I am well aware that my body is a bit munted, and that no matter what they do surgically it will never be fully right. 20 years of living with endometriosis has taught me that. Brother Pain has been such a constant companion that it is hard to imagine life without it, and it has certainly shaped my attitude to others who are suffering. I have been learning again to pray by holding on - that there is absolutely nothing I can do to make myself worthy of God's love.

Prayer doesn't have to be words or pictures or contemplation. It can be simply hanging on to God's hand in sheer desperation when there are no words: when all you can do is hold on and scream, not even finding words to cry out for mercy. I can hold God's hand, knowing I was with God in the beginning and he was with me. I can hold on, saying nothing because there is nothing that needs saying, nothing I can say. We can hold hands. Nothing I can do can make me worthy of God's love, and even missing an Office or giving up in despair because the words are smearing on the page will make God love me less! Nothing I can do can separate me from God or take God's hand from mine - even when I can' hold on because I have no strength to do so, God does not let go of me.

One of my friends showed me this without even knowing it. A few days before I ended up in surgery, I fainted at work (for the third and most serious time). I was in a meeting and felt horrible: a whole heap of pain and I was losing the words other people were saying. One of my friends (who was sitting next to me) touched me and asked me if I was okay (apparently I was white as a sheet!) and I asked to be excused as I felt terrible. I went into my office to lie dawn for a minute to try to get myself together and felt myself falling even though I was lying down.... I woke up enough to text my friend in the meeting (we had arranged an emergency code in case I needed help at work) and he came and found me.

I remember coming to and seeing him there, sitting on the floor next to me, and I felt him holding my hand. Most of the time, my hand was limp in his - when I faint from the pain, I can still sometimes hear voices and the sense of touch is the last thing to go. I could feel his hand - I couldn't grip his, but I could feel him. When the pain came I tried to break his hand though! To finish the story, he helped me take what painkillers I could when I woke up a bit, and then waited with me when I fainted again, until I came to enough to get in the boss's car and get taken home.

When I thought about this afterwards, it became a symbol of God' love. I could do nothing. I was completely helpless. My hand was in my friend's but I couldn't hold it. He held me. God, through my friend, was holding my hand. Nothing I could do could hold on to him at that point. God held me. Even when things are really bad, God holds us. We hold hands with God, we are contained and wrapped in his love, even though we might not feel it or know it, even though we might be completely absorbed by our pain or our depression or the dark night of the soul, or.... God just is. And we are because God is. And we are wrapped and held in his love. We hold hands.

There and back again

A long time away from the blog but here I am again.

Lots going on. The one currently exercising my mind and heart is the fact that I have major surgery scheduled next Wednesday. I'm a bit stunned at the speed of this - I only saw my specialist for the second time on Friday, and I got all call on Monday to tell me that that it's scheduled for the following week!

I've been frantically trying to clear my desk, which wasn't helped by feeling very sick yesterday and working from home today. Oh well, there's nothing I can do there except keep doing what I can manage. I was supposed to be meeting with other senior staff yesterday to farm out some of my projects and regular activities but I got sent home instead! Oh well, there's always Monday.

A letter

A Facebook friend of mine posted a link to this open letter from endometriosis sufferers which says far better than I ever can what it's like to be one of us, afflicted with this terrible, incurable disease. I'm lucky: I've had 4 years pain-free because of a successful treatment option that is now no longer successful. Before that: hell on earth. Now: skirting around the edges of hell again and quite frankly terrified at how bad it could become. And even more frightened that I may have genetically passed on this hideous disease to my daughter.

Please follow the link and read it. I can't copy it because it's copyrighted, but everything in there is something I have said, one way or another, over the last 20 years or so.

Brother Pain

Long term readers may remember me mentioning in passing that I have endometriosis. This nasty. incurable disease has caused me not a little pain over the years, not to mention significantly impaired fertility (which is why our daughter is really a miracle). The reason this comes up on the blog now is because it's back. Slightly more accurately, the treatment I have been using for the last 5 years is becoming less effective. I was warned this would happen, but didn't expect it so soon (having had a refresher of the treatment last year and knowing it was supposed to be good for another 4-5 years...).

I have returned to living with Brother Pain again as a near-constant companion. Some days are worse than others and I need to be careful with my strength, particularly with the demands of my job. I am however, very blessed that when I had a conversation with my boss I found that he knew others who have this and understood the implications, perhaps better than anyone I've talked to about it (with the exception of my hubby and other friends with endometriosis). He is being very understanding which helps a lot. One of my other friends at work is also fairly well up on the issues and seems to have appointed himself to keep an eye on me, and occasionally sticks a head around my office door to see how I'm doing, which is really nice.

So, now, decisions to be made. I have an appointment with a new specialist later this month (unfortunately the move has meant that we had to leave our lovely Wellington-based specialist who did several of my surgeries, oversaw my pregnancy, and did the emergency caesarean to deliver our daughter) and will have to talk over the options. More surgery? Other options?

I have however been rediscovering something that I began to touch on and learn the last time I had major issues with this: prayer through pain. Back then, I began to reflect on the crucifixion and to use the pain as a lever to prayer and a deeper understanding of what the crucifixion was for and what it cost. It's hard to explain but something to be experienced - and it gives me a focus when the pain is eating away at my insides!

Oh, no, not again!

I was delivering some training yesterday with Air New Zealand when one of their staff burst into the room and said, "Have you heard about Christchurch? It's been flattened!"

6.3 on the Richter scale, right under the lovely little port town of Lyttelton, just 10km from the city. And this time, just at lunchtime. Enormous damage to one of New Zealand's most beautiful cities, and this time, casualties. Lots of them. Urban Search and Rescue swarming over the city, combing for survivors. Confirmed deaths. Extended family confirmed safe, but they're the lucky ones. Lots not, and many people I know are waiting for news of loved ones. Major buildings pancaked, and many of the lovely heritage buildings that survived so far are now just rubble. Christ Church Cathedral hit hard this time.

Worse than September because shallower, but also under buildings that are already weakened and suffering significant strain. Just awful.

How to pray? I offer my hurting heart for those who are hurting. NZ's leaders say this is likely to be our worst disaster in our nation's history. How much more can NZ take? Christchurch in September, Pike River in November, now this? We are reeling, but we will carry on. We will never give up.

Sublime and ridiculous

The last few days had been really good ones: Transfiguration, and Rick Stein - and now for the ridiculous. On the way home from Rick Stein last night, on the long way around that we had to go because SH2 out to the Hutt Valley was closed by a slip, I started to feel a bit grotty - incipient sore throat and all that. And by about 9pm last night I realised that I was in for it and emailed my boss to let her know that I might not make it in today, and when I woke up before 6 this morning I knew that the idea of trying to go to work was completely futile.

So here I am, bundled up in a rug on the couch, aching all over with a throat that feels as though it was specially imported from the depths of Arabia, sand included, and muscles that appear to have been transmuted into something resembling gelatine but with a special bonus of soreness just to make sure I stay awake, and a head that is doing its level best to drift away. Fortunately hubby and small daughter were at Playcentre this morning so I could go back to sleep, and the cat, bless his little furriness, came and snuggled up with me.

The interesting thing is that I've been thinking of that lovely Psalm on and off most of the day, the one where the Psalmist talks about "all my bones being out of joint" and fully understanding what the Psalmist meant. Maybe he wrote this when he had a cold, or had been hurt in some way - but out of that pain came praise. Hopefully I can manage the same!

Feast of the Transfiguration

I have had a wonderful day. It all started last night, really, when I got home from work to discover a delivery had arrived for me. It was my copy of Barbara Brown Taylor’s book An Altar in the World that I had ordered from the Anglican Resource Centre at her workshop a few weeks ago. The shipment was delayed for various reasons, but in a way I’m not sorry. It arrived on the eve of Transfiguration, and it really has transfigured me.

‘Human beings may divide things into as many piles as we wish – separating spirit from flesh, sacred from secular, church from world. But we should not be surprised when God does not recognise the distinctions we make between the two. Earth is so thick with divine possibility that it is a wonder we can walk anywhere without cracking our shins on altars.’ (p.15) She’s talking about recognising the wonder and “God-breathed-ness” of everything that is – seeing the fingerprints of God everywhere.

I went for a walk at lunchtime and suddenly began to understand: each person I saw was like a little universe walking around, with their own infinite possibilities, their love, their loss, all of which was cradled and lit by the warm golden light and chased by shadows. The wind, surprisingly warm for late winter, twinkled and teased my hair, twirling it around my face, and the pigeons came and sat right next to me, trying to convince me that they needed my lunch more than I did. The light picked up that shimmer of the pigeons’ feathers, all the glints of pink and green and golden-blue. God made this. It is singing his song. It is imprinted with the touch of God’s hands, breathed on by God’s Spirit. It is holy – and all I had to do was pay attention.

Barbara Brown Taylor encourages us to pay attention to the world around us: to allow the small things to show us God’s grandeur, to build “altars in the world” and praise God wherever we are in whatever circumstances. She celebrates simple things like eating, and drinking, walking, living, running, breathing, noticing. Where is God’s finger pointing today? It is a reminder to me: Pay attention!

And it's not just when I'm having a good day either. Looking at the patterns of the naked tree branches against the sky reminds me that even when I feel naked and shivering, when I'm bending under the blast of a screaming southerly wind, everywhere I have been and experienced has made me strong - like the rings of the tree, it doesn't show but it's there. I just have to notice.

God in Ordinary Time

That was the title of the Barbara Brown Taylor workshop at the Cathedral today. It would go down on my top three events in terms of inspirational potential, alongside the conference in 1995 lead by Richard Foster, and the sermon preached by Bishop Tom (NT) Wright when I was at BCNZ.

Lots of things bouncing around, but I'll try to summarise. Her key concept was that faith, and the language of faith, has to be embodied - in our bodies. Lots of "God words" are really abstract: faith, love, grace, forgiveness, sin, Trinity, even God and Spirit - abstract words. She was talking about reclaiming our language and putting it in concrete, provocative terms. She told lots of stories, which helped us see what she was about. Experience of God comes through the body: smell, touch, taste, hearing.

I loved some of the questions she asked:

• What does grace taste like? My answer: a shot of Bailey's and a shot of chocolate liqueur in half a glass of icy cold milk, topped with cream, on a Friday night
• What does God taste like? My answer: crumbed schnitzel with melted cheese and bacon inside, with a dash of lemon juice on top
• Pick a scar you have, and think about what it taught you about God. My answer: the scars from my surgeries for endometriosis - learning that the God who blew the world into being like we blow bubbles knew what it meant to experience pain.

Where do I experience God?

• Walking on the beach, the taste of salt on my lips and the smell of sand in my nose. The feel of damp sand between my toes. The seasgulls crying the loneliness of God. The splash of the waves singing the rhythm of God's world.
• Walking out at lunchtime today to get something to eat, into rain so hard it sounded like thunder on the road, the raindrops dancing the dance of creation.
• The feel of my daughter's hand in mine.
• The purring of my cat as he rubs his head against mine.
• The smell of beeswax candles burning.

Lots of places and ideas to think about, to experience, to be. I will be living with this workshop for a long long time, and the conversations I had with different people there.

Training in the rat race

Not much to tell. I'm in the middle of a mad week: I was training in Kapiti on Monday morning, office Monday afternoon and yesterday, Upper Hutt today and tomorrow, and Kapiti again on Friday.

I was fairly worried about today's courses: I was running the "second pilot" of a new version of one of our standard offerings on manual handling and DPI (discomfort, pain and injury) - a topic I know quite a bit about, but the pilot version of the course doesn't flow all that well so it was a bit of a mess on Monday. Today went better. I was also fairly worried because I was not feeling all that flash yesterday and only got about 2.5 hours sleep last night.... fortunately I knew almost all of my trainees from previous courses and they're all good fun, so I said to them, "Today is either going to go like a bomb, or be a bomb!"

The wind blows...

Finally some sunshine, although there is still a huge wind. Last night we had an enormous amount of wind - in fact, I think it's just about the windiest I ever remember Wellington being (and that's saying rather a lot). The house was actually shaking at times, and even though it was really hot, we had to have all the windows and doors shut to stop stuff getting blown off shelves etc.

The wind contributed to a nearly completely sleepless night for me. The shrieking of the wind and bashing of trees etc, combined with a spot of the old chronic pain issues meant I didn't get to sleep until just before 6am this morning - not good when small daughter wakes somewhere between 7.30 and 8am, and I feel like I've been hit by a truck today. Fortunately wonderful hubby got up with her to let me have another hour or so of sleep. We have friends coming over for dinner: good friends that know us well, so it will be a mellow evening but I have no plans to be up late tonight!

Travelling through

The cardiac surgery of one of the Community Guardians has come at an interesting time for me. I was reading one of my favourite blogs about the concept of "offering up suffering", which is an idea I've never been all that comfortable with. Basically, it says that when we are going through a tough time, we "offer up" that pain to God for another purpose. This has always seemed to me to be denying the reality of pain, rather than allowing ourselves to experience it.

My response to this post is below. I thought it might be worthwhile to post it here.

'I think about this as not “offering it up” but “being in it”. I struggled with a very painful genetic condition for years (currently in remission) and each time the pain came, I tried to allow myself to pray in it – praying through it, and allowing the pain and suffering itself to be my prayer. I used to think a lot about the agony of Jesus on the cross, and the agony of his mother and friends as they watched him die. I couldn’t pray words as I didn’t have any and often wasn’t conscious enough to pray with words (amazing how significant pain messes with your mind, whether or not you’re on painkillers!) but I tried to use the experience as a way of identifying with the crucifixion. I was never very good at it, but it did help me bear the pain. I also tried to let my pain be an identification with all those others in pain and weakness. Again, not very good at this either! This also works when it’s not physical pain, but emotional and spiritual. It’s really hard to do though…'