You gotta believe in something....

I find myself in the slightly unusual place of feeling as though I have nothing to say. It’s not as though there hasn’t been interesting things happening, either: the Womanspirit Rising conference I went to in early November in Christchurch was amazing, and there has been plenty of interesting things happening in other spaces. It’s just that …. I don’t have words for them. Maybe if I just try and reflect on stuff, words will come.

Womanspirit Rising felt like me finding my foremothers: all those courageous women who fought for justice and lived their spiritual truths in the third feminist wave in the 70s and 80s – and suddenly there they were, and there I was. I was the youngest by about 15 years (which was mildly depressing, in that I really hoped there would be other women my age finding their truth and journeying) but it was immensely inspiring to talk and be with women who have walked the same road I am walking. It has been so lonely at times over the last few years, exploring what it means for me for the Divine to not just wear a female face and form, but to BE the feminine divine, with all the change of emphasis and turning around that that has meant for me. At the conference, I realised I was not alone, but somehow I need to get other women travelling with me.

There were a mix of women from all backgrounds: christian, pagan, Wiccan, “nones” and “dones”, but all of us were looking for that great brightness who has come with so many names over the years: Inanna, Isis, Ishtar, Hekate, Kali, Mary the Magdala, Mary Queen of Heaven, Hine-anu-one, Hine-nui-e-te-po, Brigid, Dana – the dying and life-giving one.

For me, I think the gift of the day was the sense of connectedness with all of these women and their journeys and stories – the sense of weaving together the rope that is stronger than any one of us alone. It was kind of summed up in this gorgeous clip (Nina Paley You Gotta Believe):

I love the dancing Goddesses in this video - all those ancient ways we recognised her, grooving away in their own way. I especially like watching the Venus of Willendorf having her party, with all her wobbly bits grooving too. Such freedom in who she is!

So am I finding freedom in who I am? What a good question, and to be honest, I don't know yet. What I do know is that there is so much more below the surface, below that carefully-cultivated christian top layer. The "spiritual archaeology" my new director recommended is giving me the "permission" I think I still needed to look at those other layers: Grail myths, Egyptian mythology, music, storytelling, water - even endo and all its attendant lessons that I never wanted to learn but had no choice about. Who knows what will come of it? I don't, but I warrant that Someone does....

Just a last thought - I remember reading Mary Daly's quote that 'The word "sin" is derived from the Indo-European root "es" meaning "to be'. When I discovered this etymology, I intuitively understood that for a woman trapped in patriarchy, which is the religion of the entire planet, "to be" in the fullest sense is "to sin".'

What does "sinning" look like if it also means becoming or being? What might that look like? Now there's an interesting question!

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.

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?

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.

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!