Because I Don't Want to Be Any Trouble

I saw the Great Dane puppies again today.  They are 16 and 17 weeks respectively.  One is blue and one is spotted black, white and grey.  This is the second time I have seen them in a week because I have been for two walks this week. I don't know the last time that happened.

Both times I have gone walking in abject frustration and with simmering fury at my body and the way its limbic system has revolted against everything ever since I was a teenager, as if a whole swarm of bees or a sabre is constantly threatening to end my life there and then.  No wonder I developed chronic fatigue syndrome.

I went walking both times furying and frustrated at this reaction that occurs without my permission to things that aren't even there and didn't happen last decade or even the decade before last, let alone now.  Having said that, I'm pretty sure that I'm traumatised from having this stupid disease, and at finding myself back in this relapsed state after being quite convinced I was healed forever of CFS.  Won't make that mistake again.

I went walking without the heart rate monitor, which is the CFS version of riding the top of a train or snorting cocaine with a bunch of hookers, or going out drinking all night.  Walking without the heart rate monitor is walking on the CFS wild side.  On the other side of the wild side is perhaps some kind of post-exertional malaise but I don't even fucking care because I've been able to go walking twice in one week!

When I walked on Tuesday (or was it Wednesday? All the days blur one into another in my stupid life).  No, it was Wednesday, which means I have gone for two walks in two days.  I reckon the last time that happened Hawthorn wasn't the premier.  At least.  Maybe it was even a Geelong premiership year.  We play Geelong tomorrow night.  I'm not scared of playing Geelong any more, not like when they beat us 90 squillion times in a row.  Which doesn't mean they won't beat us, just that it doesn't feel like we're their bitch anymore.  I would say if anything that it's probably more like Geelong is our bitch, but I don't like saying that kind of fate-tempting stuff the day before we play them because really, either team could win tomorrow night and really, I don't like saying another team is our bitch because I'm not 15 and I'm actually quite zen about being beaten.

When I walked on Tuesday I saw these puppies for the first time and they were just so beautiful.  One of them looked quite like this:

Jonathan Willier (creative commons 2.0)

The other one looked a little like this, only bigger and with different spots.

Bryan Peters (creative commons 2.0)

Or a little like this, only smaller and with different spots:

Jay Iwasaki (creative commons 2.0)

The woman who is the dogs' pet told me that her previous Great Dane had died a year ago at the hefty age of 13.  That's ancient for a Great Dane, who tend to live only till they're about nine or so.

Whenever I think of Great Danes I think of the Little Golden Book I had as a child.  One of the pictures, by that illustrator that I loved most called Louise someone or other, was of a Great Dane sitting next to a baby.  Gentle giants they are considered, and the dogs' pet said so too, and I could see it in them both even at this young age.  They are obviously well looked-after and of the pedigree variety of Great Dane, and are going very well at their doggie obedience classes.  The spotty one especially was quite smoochy, and sat very nicely.  Today they only jumped up a little bit and stopped when their pet said to stop jumping.  If there is any dog you must teach to not jump it's a Great Dane.  Well, any dog really 'cause jumping is very uncool, but if you lapse on training a Great Dane not to jump you'll accidentally kill your Aunt Martha when they jump on her in greeting when they're three.

When I saw the two dogs coming towards me today I felt a fluttering in my stomach because dogs are pretty much maybe my favourite thing ever.  They calm the limbic frazzle.  I may possibly have squealed a little, I'm not sure, as I approached them but I likely used my puppy voice.  I apologised to the woman.  I said, "Agh, you're going to start cringing every time you see me coming. Here's that bloody woman again, stopping me from walking my dogs."

"No, no, it's fine," said the woman, and I didn't believe her because my confidence is a tattered blood-stained period rag.  "It's good for the dogs to meet people," she said.

I patted the dogs for a bit and then shared what I had just been pondering before I came upon the dogs and their pet.  I was walking down the recently newly-opened track, the bit I'd never walked down before a few months ago because by the time I came upon the scene it was closed because of damage from the 2009 fires.  Six years later there is hardly any evidence of the fire anymore, just little bits here and there if you care to look.  Like on the rather beautiful, straight ghost gum tree.  Large, so that I just had to touch him as I walked past, almost white.  One of his branches had a branch running off it that was black.  But the rest of him was burnless, his skin intact.

"I was just thinking," I said to the woman, "how nice it is walking down here.  It's such a lovely track and seeing it now it's regenerated is cool."  Or something like that.  I can't remember what I said because it was more than two minutes ago.

But as soon as I said it, this pondering, ruminative kind of statement, it fell to the ground straight after coming out of my mouth.  The woman agreed in a dull kind of way, and I just knew that she was gunning to get going again, to walk her dogs so she could get home and do the seven tasks, and make dinner, and get online and blah, blah, blah, blah.

And I felt, as I feel so often, that I really need to just restrict that kind of pondering, ruminating to writing, and to talking to Andrea and my mum, and to not hardly ever speak a ruminative word at any other time because I'm so tired of this feeling that I'm like the old lady in the street that you try and avoid because you know she's going to ramble and you don't have time for rambling.

As I left the woman in my wake I continued feeling bad things about inconsequential things.  I felt that familiar feeling that accompanies me almost constantly these days, of being half invisible, a pointless blot on the landscape, a useless thing.  And I felt it rise up in me, this extreme dislike for people I don't know who I'm interacting with in a public place, who seem more and more like fucking zombies when I do talk to them.  And then it reinforced the same feeling that is probably reinforcing everyone else and making a giant snowball that will roll down the hill and smash us all to pieces, that people are crappy and closed off and disinterested and not worth talking to anyway.  I don't truly believe in my heart that people are crap, but it feels like they think I am.

Actually, as I walked away, I felt like the next time I come to walk here I will make sure it is earlier or later so that I don't run into this woman again, even though I really, roolly, truly want to run into her dogs again.  But I feel like I will feel uncomfortable next time, as if I can sense off that she feels uncomfortable, that it will be a burden stopping and letting this inconsequential woman pat her dogs.

And the inner witness part of me talked back to me and it said, "No, no. This feeling is just your paranoia talking. That's not necessarily how it actually is."

But the feeling that she might think that way about me is enough to make me react, so that next time I will happily cut myself off and go walking at a different time just to avoid it.  Because I don't want to be any trouble.

I've referenced Glaxo Smith Kline on here more than once in derisive tones.  They are a placeholder for the revolting capitalist corporate greed that we are all tired of because now we've realised that it doesn't have to be like this, it just is like this in the story that we're also sick of and are wanting to change without knowing quite how.  However, despite Glaxo being as tossbaggy as any other corporation, I find myself taking one of their products, lamotrigine, which I have grudgingly begun taking because it's good for people with CFS (I took it years ago for years until I stopped and forgot all about it.  Why I stopped is a reason consigned to the great Londonish fog of memory).

Lamotrogine is also good for anxiety, depression, mood stabilisation and PTSD.  Wish me luck.

Because I don't want to keep feeling like I'm being any trouble.

Eight Months into the Pyroluria Journey

I've been taking pyroluria supplements for about eight months now.  For a few months before that I was taking B6/zinc in pyroluria-sized doses.  So have I noticed an improvement in my health in that time?

Well, I wish it was that simple.  When it comes to health issues, sometimes you have to go backwards to go forwards.  And I think that's what's going on with me.

If pyroluria existed in one compartment of my body and affected no other parts, and if taking supplements meant that I simply fast-tracked from point P to point A, then I would be able to have a much clearer indication of where I'm at and what's going on.  But sometimes getting your body to do what it needs to do can create some extra problems along the way.

I know from hair mineral analysis and by my doctor's assessment respectively that I am a slow oxidiser and an undermethylator.  This means that my body has accumulated a whole lot of gunk in its travels that it's been unable to get rid of through the proper detoxification channels.  This is why I need to do extra things like have saunas and coffee enemas to help it along.  It's why my body has sequestered away in its tissues certain things like copper because it didn't know what else to do with them.  Better to shove them away in a room wherer you can close the door than let them float around in your system doing constant damage.

The problem with the process of taking stuff that my body needs to function better is that it begins opening up all those doors where it shunted things away in years gone by and it begins doing some spring cleaning.  But the spring cleaning can happen too fast, and if your body struggles to get rid of it of all of this vacuumed-up stuff, like mine does, then it can tend to recirculate in your body.  Not nice.  All of this spring cleaning has put extra pressure on my kidneys, my adrenal glands, and suddenly I find myself back in the land of adrenal fatigue and pending sickness benefits.  So I am suspecting that maybe I got too excited about spring cleaning and went too fast.  But you sometimes don't know these things except in hindsight.

When my doctor told me that it can take undermethylators up to two years to get right, I didn't really want to hear that news.  But it turns out that I think she may just well be right.  Time to climb up onto that Zen ledge, the one that sits above the raging waters of loss and frustration, and watch my emotions and frustrations pass.  Things are as they are.  There are ways of finding peace no matter what situation you are in.  You just have to stop believing that commonly-held idea that a bad situation means no peace to be found.  It's not true.  It's just hard to get there.  Impossible if you don't believe you can.

Adrenal fatigue is a true shocker ~ you can't really know how unsafe and vulnerable a body can feel until you're stuck in one that's lost its muffler a few corners back.  Makes it harder ~ but not impossible - to lean into the curves and ride it out.

Knowing why this is happening is helpful.  Doing what I need to help my adrenal glands heal again is a long process ~ a full-time job all its own.  And knowing that I am on the right track is comforting, even while it feels like it's flung me backwards into the saltbush. 

Messing about with clay - one of the things I need to return to
to help my body heal itself.

Pyroluria Supplementation

Update June 2013:  My pyroluria supplementation has changed rather drastically since I wrote this post.  These days I am taking 50mg of zinc at night and 100mg of P5P in the morning, amongst many other things.  Every single body is different, and within every body are variances that make what is right for you at one time wrong for you in another.  It's a complicated process of trial and error finding out what suits you, that's for sure.  And as at September 2013 I have dropped my P5P back to 50mg.

~ ~

I have been taking supplements ever since my pyroluria diagnosis back in August.  Actually, I began supplementing even before I got the official diagnosis because I just knew that I had pyroluria.  I guess my strong knowing might have something to do with the fact that when my treating GP looked over my completed questionnaire she said she'd never had anyone tick so many boxes before.  I am, it seems, a pyroluria poster child.

(Which is nice, because I just thought I was a stuff-up).

I wonder, what would a poster look like for a pyroluric?  Black and white.  Lots of shadows.  Introspective and solitudinal gazing out of windows onto snow-filled landscapes.  Something along those lines :)

Give or take, it's been six months of 100 mg of zinc a day and about 750mg of B6 and about 130mg of P5P (the other form of B6) along with other bits and pieces that we sussed out after the blood tests*.  Those are tailored for me though and are very high.  Anyone who is beginning supplementation needs to start at a low level and build up because your body needs time to adjust.  Also, taking these things your body needs so much signals it to begin detoxifying from the high levels of copper you could very possibly be suffering under, and getting rid of copper can be a little traumatic.  Best approached as slowly as possible. 

I would recommend that anybody who is able to, find a practitioner versed in the Walsh/Pfeiffer protocols to help them along.  Don't count on your regular GP knowing anything about it.   At all.  And, as amazingly arrogant as it all is, if they don't know what pyroluria is, don't expect them to do some research to find out.  Many GPs seem unable to resist taking the route of making their patient feel bad about trying to find solutions to their health problems that they don't happen to know anything about.  Bizarre and frustratingly arrogant, but true.

If you are in Australia, a good place to start is with the practitioners who practise under the Bio-Balance umbrella.  (They also have practitioners in Singapore, New Zealand, the Philippines, Indonesia, Ireland and Norway).  Initial consultation can be expensive.  Having your supplements compounded is an expensive outlay, but then you're right for months on end.  As an indication, it cost me about $500 for testing and consultation, and then another $300 for three months' supply of compounded supplements.

Being sick is expensive.  It breaks my heart.

If you are having problems finding anyone that can treat you, or if you have come up against complications in your treatment and are a Facebook user, can I recommend the Pyroluria group.  I am a member, and there are a stack of good-hearted people there who will help you find your way.

The level of B6 I'm taking is apparently a bit controversial.  My treating doctor, Joanna Hickey at Wellness Medicine in Clifton Hill, who has trained under William Walsh (who, along with Carl Pfeiffer is one of the gurus of pyroluria treatment) has said she can't officially agree to me taking so much B6 because of the risk of nerve damage (neuropathy).  But I know my body needs more.  I can remember only a fragment of my dream last night, and that's on the crazy dose I'm already on.

I got a bit scared off about the high B6 when I first started seeing Joanna, and so I cut my B6 dosage right back.  But the distinction between the menstrual period I had before cutting it back and the one I had afterwards couldn't have been more marked and indicative.  The first period was a breeze.  Barely any period pain at all, and no sore boobs beforehand.  A bit of PMS (but then it's hard to define PMS when I have mood fluctuations for 31 days of the month anyway :)  The next menstrual cycle after I dropped the B6 had all of those symptoms return and greater levels of PMS to boot.  I have now since upped my levels again and monitor myself for neuropathy.

However, a doctor in the US who has trained under Carl Pfeiffer reports that he regularly treats his patients with a B6/P5P combination of up to 2000mg without problems.  According to him the neuropathy is decreased when using  P5P.  I am also taking niacin (B3) which also helps prevent neuropathy.  So I guess I am going to trust my body on this one.

I am an undermethylator, which means that my body is not easily able to get rid of toxins.  I know this.  In my years with CFS (and especially after antibiotic therapy to treat infections) I often felt "toxic".  I still do.  It's a system-wide malaise and it is frustrating because you feel so bad, but there is nothing you can definitely say that is "wrong" with you.  (Just everything.  Like a system-wide computer virus).  I have often wished for a broken arm so that people could see how bad I was feeling.  A cancer diagnosis would have got me more sympathy.  But CFS?  Being a walking too-hard basket makes anybody uncomfortable.  A pyroluria diagnosis (along with an understanding of how fragile my adrenal glands are) is freakin' fantastic by comparison.

According to Joanna Hickey it can take up to a year for the methylation cycle to work properly once you start treating pyroluria.  In that regard I can say that I am feeling so much better than I was.  I really do feel like my body is starting to clear itself.  I have been trying to detoxify my body in one way or another, intuiting that something was wrong, for so many years now.


As for stress, I still feel at times like I best resemble a paper bag.  Too much stress (that other people wouldn't even notice) and I crumple, and then I melt down, and it's a horrible and lonely and deadening experience. However, last week I had a stressful experience with a new client, and after hanging up the phone I could feel that familiar meltdown feeling heading my way.  But this time, with deep breathing and a good kind talking-to, I was able to head it off at the pass and move on with my day, though a little shaky.  But it beats having to go and lie down for a couple of hours till everything stops feeling overwhelming.

As for energy, my levels are improving.  I had an adrenal fatigue situation a year and a half ago, and it's taken me forever to climb back out of that space.  An understanding of how much stress your system is under living with pyroluria provides an understanding as to just how depleted your adrenal glands probably are.  I've found some real gains using withania and other herbs but again, rebuilding adrenals is not a quick fix.  Still, I am appreciating how much easier life is when those little walnut-sized glands that sit atop my kidneys are able to function properly.  It's hell when they don't.  But I have been gardening and exercising and stuff lately, and while most nights find me collapsed on the couch with a desire to do things that my body doesn't tend to possess, I have some hope that that is changing.

I feel like my ship is being strengthened.  It's such a long and slow process that often it feels like nothing is happening and nothing is ever going to change.  I guess that after living on a ship that for 30 years has had some serious rickety factors, a strong and steady constitution takes a while to rebuild.  And not just on the physical level.  That stressful physiology has created some mountainous terrain that needs ironing out.  The combination of supplementation on the physical level along with a truly badass therapist on the other is causing me to believe that even though I can't see it, and it feels too good to be true, that a whole lot more peace and ease are coming my way.  I do admit I find it hard to believe, but I do believe that thought feels pretty damn good.

If you are ordering supplements, may I recommend Iherb.com?  Even including costs associated with ordering from the US to Australia, they are still the cheapest place to order online.  New customers can receive $5-$10 off their first order by quoting a current customer's gift code.  If you quote mine - ZEY804 - when you are checking out on your first order in the "Apply Coupon Code" section I will receive a discount of $5-$10 off my next order as well - and I can tell you, this broke writer would very much appreciate the extra help :)

Wake up and it's that space again. Feeling these feelings that are so common to me, which have been so much a part of my experience of the last several decades. Sometimes for long stretches on the periphery, and then they return. When they have returned, I have thought that they were personality defects, flaws requiring psychoanalysing. To realise that they are biochemistry is like a reprieve I am still getting my head around.

Through the prism of those feelings I am trapped and enslaved. I project it out onto the world (where truly there is so much enslavement), but really, what it is that I am enslaved by is going on within my own body. But there is freedom. I feel it, when I'm not feeling like this. At those times it is like a fog which clears and I am back to being me again and it's as if this never happened. But then the fog closes in again, and sometimes I don't even realise.  I have been struggling against this particular fog for so very long.

I feel apologetic for the fact that I have woken up unhappy this morning. What chance do I have when on opening my eyes I'm already swimming in the stress space, with that metallic taste in my mouth?  But this too is myself. This has been myself for as long as I can remember, and it's been like something trailing around behind me, a stink, like a bunch of old sausages.

I don't like to write here when I am feeling bad. It feels totally self-indulgent. I feel like I always need to be perfectly upright, that to be down is a vulnerability that, added to the rest of the vulnerabilities I have been getting about with, feels like a straw floating down onto the back of a camel. Writing here when I feel bad is an imposition on a world which already has far too much ugly and far too little hope and far too little freedom.

In these spaces, the best thing isn't to try harder. The hardest thing is to try less.  It's very hard to resist trying harder when your mind is revved and agitated. But this morning it is filtering up to me, somehow, through the tiredness and the murk and the reeds from the bottom of the swamp, that trying harder is not good for my soul, that it will just make me feel more enslaved. That stopping and slowing down and going a different way can be a revolutionary act in my own mind. That if I have woken up into a bad day, that the different way is where freedom is, even if my inner moneymaker screams what about the bank balance, what about the bank balance.

Inside I have a three year old child who is furious that she is not omnipotent.

It has been so long since I have regularly meditated that now it feels like a dreamspace.

I have made myself available for a less work than usual today. Because today is a day I am struggling, and my body has decided that it won't let me sleep any longer and I am tired and enslaved. I don't seem to understand my limitations very well at all. The inner promptings come from a long way away. Up from the murk and through the reeds another part of me which sits miles aside from the daily grind tells me to stop. She points me in the direction of the desk where I have not done anything creative for literally weeks. I am tired and cold and everything feels nasty. Though it never feels like it at the time, it is the best time to return to that desk and muck around a bit. After the sauna. Remind myself that I'm free. 

The Two Sides of the Pyroluria Coin

What a strange and bipolar health fortnight.

This is the good side:

The Friday afternoon before last, I was sitting in bed in a last-ditch effort to try to study.  I'd failed dismally so far, sitting in front of the computer and trying to make sense of the assigned readings while being distracted every three and a half seconds by something other than the assigned readings.  Earlier in the day I had given in to tears in pure abject frustration.  No matter how hard I tried, I just couldn't seem to focus on the words in front of me long enough for them to sink in.  I was already getting behind in my studies, and it was only week 2 of the trimester.

Then my partner came home with the envelope which contained the test results that said that I have a condition called pyroluria.  Even though I had strongly suspected it, it was still a surprise.  Pyroluria is a condition where the haemoglobin in the blood produces too much of a particular substance called kryptopyrroles.  This substance binds to vitamin B6 and the mineral zinc, and so when the body excretes the excess, it rather unfortunately takes those substances with it.  And so I find out that I am uber-deficient in those two things.  Unsurprisingly, both are used to treat ADHD.  Unsurprisingly, people with pyroluria can't handle stress.  That'll be me, sequestered away from the world for years on end while I try and deal with why my body is so fatigued, so depressed, so anxious, why I just can't bloody cope.  I think I have the answer.

And so slowly over the past two weeks I have built up my levels of B6 and zinc.  I am taking five times the daily recommended amount of B6, and I know it's still not enough (apparently the way to measure when you are having enough is regular dream recall.  Not even close to that yet).  And I am starting to notice a difference.  The B6 in the morning and the afternoon is giving me this lovely energy.  Oh, it's nothing normal people would be able to notice.  But for me, there is this new stability I am feeling in my body, an understanding that a piece that has been missing for a couple of decades has now been put in place.  I can only imagine this energy will continue increasing.  The zinc at night (three times the recommended daily dosage) is helping me sleep.  I am getting so tired at night some nights that I could go to sleep at 10 pm if I needed to.  I can count on one hand the success I have had in managing to get to sleep at 10 pm over the years.  It would be amazing if I could.

~ * ~

This is the bad side:

I have high levels of copper.  I first suspected it over seven months ago when I did a home heavy metals test.  The resulting symptoms when I tried treating the high copper were enough to convince me that (a) this is something of what schizophrenia feels like, and it's hell; and (b) though I was only a quarter of the way through the bottle that would help get rid of this excess metal from my body, this was as far as I was able to go with it.  There was something else that needed to give.  There was something missing which was making this attempt impossible.

Hence trying the test for pyroluria.  Hooray for intuition - I stand in awe at the powers of intuition I have developed about my own body, because I was right, and a handful of jigsaw puzzle pieces are starting to fit.  B6 and zinc both displace high copper levels in the body.  These levels have become high in the first place because of the lack of those two substances in circulation.  And so the blood, in its wisdom, noticing these high levels of copper circulating within it, began the task of secretion.  If it can't get rid of the copper in any other way, it will hide it away.  And so it does - in the liver, in the brain, in the lungs, in the kidneys.

And so now I have begun reinstalling B6 and zinc, my body is taking the opportunity to get rid of the copper, now that it finally has the chance.  And so out it comes, from where it's been hiding all these years, back into my bloodstream, and if I don't have a sauna, or shoot coffee up my arse (I never did make any pretensions to this blog post being romantic), then I begin to feel those hellish symptoms again.  Like yesterday, when I didn't have time for a sauna or to shoot coffee up me bum.  I am still trying to find workarounds for the emotional symptoms.  There are certain supplements which help in the detoxing process (and certain other ones I am taking, such as chlorella), but it's a process of working out what works best.

When I feel like this, I feel in hell.  Last night, my partner quietly but forcefully said to me, "I need you to stop talking now."  I hadn't realised that I was raving, but apparently I was.  But his comment came out of the blue, and I'm a fragile soul, and so it wouldn't have mattered how he said it, I still would have broken into 1037 pieces of glass.

Because it's such a weird dreamscape from here, when I am feeling like this.  The only way I can identify that what I am feeling is spilling over into the outside world is when feedback like this happens.  And then I think of other people I know who I suspect have high copper levels, and how they sometimes have a tendency to go on and on about certain topics until I'm exhausted.  And so suddenly I realised last night that that was me, and that was how I was being.

It makes me want to run away as if my hair is on fire and live in a hole at the bottom of a bridge until I get all this stuff sorted out.  It makes me never want to have to deal with another human being again.  That's how I feel when this stuff is running through my veins. Until I stop feeling like this - which could be any time now - and then I'm back to normal again.  Normal, hell, heaven - who the fuck knows what world Susie is going to experience next hour in the rollercoaster that is copper displacement?  Which nobody else in my world knows much about.  I'm really tired of having conditions that nobody else knows much about.  It's an extra slap in the face having to explain yourself to disbelieving people.  They should be comforting me, not me having to educate them.

But then "should" is a pointless weight to place on your shoulders in these times.

But it's just one more vulnerability to pile on top of the hell that already is dealing with this stuff.  But hey, at least I'm not like this full-time. Not like all of those poor bastards getting around out there with full-blown schizophrenia.  Not like the guy I used to see when I worked in the city.  He was the gentlest soul imaginable, a beautiful man, with no home and a dose of dealing with worse than this full-time.  God bless him.

The World Bank and the IMF are probably not particularly great choices of subject matter to be obsessing about lately.  But that's where my Medical Anthropology studies have been taking me the last couple of weeks.  Is there anything more frustrating and hellish than being able to clearly see the machinations of these psychos?  And to see how long we have put up with it when we don't need to?  And how many people are still asleep to it?  And how their policies affect the poorest of the poor?  And how awesome the world would be without their evil influence?

But like I said, probably not a great choice of subject matter when you're dealing with fluctuating levels of a substance that inclines you towards paranoia in the first place.  No.  Better to lay that one down for another week. Even though it's so hard to when I feel like this.  That's another gruesome fact - whenever I feel like this, the very things I should let lay low, I can't seem to let go of, and I gnaw at them like a dog at a thorny foot.

And so this is how things are for me lately.  Depending on what day you talk to me.  And on the bad days, it depends on what hour of the day you talk to me.  On the good days, everything is coming along beautifully and I can see this lovely vista on the horizon where life gets a whole lot easier, and I get more of it back.  These good and bad days are both the opposite sides of the same coin.  This is the hell side.  And while I say reminders to myself like "This too shall pass," it won't be a moment too soon when it all does.

Change

It's both enlightening and disturbing to realise how much we make our own reality.  It comes in over time, dripping in like raindrops on carved rock, via those big and little thoughts that are constantly moving across our minds like clouds.  We are free to accept or dismiss any one of them.  Except for when we've become chained.  Most times we are chained before we are old enough to know that we are.  And then we move into our lives feeling beholden to accept certain thoughts every time they come, though they torment us.  They have become like the monster Snow White must turn and fight off deep in the forest.

Those hardest-to-dismiss thoughts become deeply carved ruts in the road of our mind, where they harden into beliefs.  Our little carts fall into them and get jammed every time.  We've driven down these roads countless times before.  Sometimes, perversely, we even like to drive down them precisely because they are painful, and we want to punish ourselves for not being what we expect ourselves to be.  The ruts have become part of our story that we tell ourselves about ourselves.

Sometimes we find ourselves down the rutted roads not out of self-punishment but simply because we've driven down them so many times that it has become second nature.  Just like when we drive well-worn routes and then realise at the end of them that we have no conscious recollection of actually driving here.  Finding ourselves once again in these spaces can make us feel as helpless as a newborn, swamped by despair at how to change what feels unchangeable, that which we can barely see.  The despair comes out of spaces of frustration where we don't know what to do, how to change, how to stop, how to start, where parts of us are still weeping, and that need reconciling, healing, hearing, patting, soothing.  What we need is encouragement that we can turn off the rutted highway and forge a new road where there isn't yet one.

Surely it's the hardest work we do in our lives, forging new paths, though the benefits are amazing and the work is honourable.  But how do you get to where you want to go when you have never been there before?  How do you know what you need to carry with you that is going to help you get there?  Sometimes our dreams tell us, sometimes what comes off the end of the pencil as we doodle tell us.  Fairy tales tell us.  Images that come from a disparity of sources tell us (for me lately it's ravens).  It's a very foggy guessing that feels quite unreliable.  But we just start where we suspect we need to start, suspecting that to carve out this path maybe we are going to need a machete, and a hoe, and a ... what the hell?  What has this bloody raven got to do with anything?  And you shrug and start hacking away, and oftentimes you find, like a present some deeper part of you has wrapped up for yourself, answers and deeper understanding further along the path.  For me, I am thinking at the beginning of yet another path that getting to where I want to go is possibly going to involve some of this tool, and some of this tool. 

The hardest thoughts of all to diminish and dismiss are the ones that are tied to unconscious beliefs.  You know, those things that in the commonplace world of logic you know you don't want to believe, and in a sense you don't.  But in another deeper sense you do, which is why they keep appearing all the time.  Oftentimes they appear disguised as irritations we feel about others, things we are projecting onto them that are really what is hounding us on the inside.

Chances are those thoughts and neuroses are hooking their tails around something that lives in that shadowy realm of the unconscious, where all those dreams and images live, where we are like enormous icebergs and the unconscious is the part that is submerged.  Where we know not what we do - or if we do, we know not why we do.  Not clearly enough to see a clear path.

I've become pretty enamoured with sitting in the middle of the road until I see where I need to begin carving a new path.  One that leads to I barely know what.  But other parts of me know very well where those paths lead.  Being prepared to walk them is part of the conscious mind's work.  Believing that there is something magical at the end of those paths becomes easier now I've walked some of them before.  I get to see the trees light up in my own forest.  I get to meet characters that I have not known before me, who wish to help me when I return to the topside world.  How beautiful it is.

Believing I shall carve a path when it relates to the biggest monster in my arsenal is much harder.  And yet, all those other paths I have carved are related to this same monster.  It seems that he needs to be beaten by carving many paths, not just one.  And carving out the new path does not really get any easier, it just gets more hopeful that there may possibly be a resolution.

But still, all I can do is walk the path.  And keep my eyes open for the surprises.

Throwing Copper and other Schizo-Affective Happenings

Well.  Let me just say that dealing with the high levels of copper you discover you're carrying in your body is only a tad more fun than impaling yourself on a bunch of freshly sharpened knives or being eaten alive by a plague of tarantulas.

Because hey, I like nothing better than walking around on my own personal rollercoaster.  Rather unlike Queensland, I've been beautiful one minute and suicidal the next.  I have had paranoia, anger and suspicion settle over me like a mantle since I have started detoxing this stuff, like the fine cloud of dust that settled over everything in our house during the Ash Wednesday fires several decades ago.  It's waxed and waned and I've had to remind myself over and over again that it's simply a physical reaction of this copper - called "the emotional mineral" - leaving my body.  And despairing about that.  Reading things into what everyone is saying that aren't there.  A feeling of hopelessness and depression.  Something that I really cannot explain to you.  The most strangest feeling.  I imagine it must be something like when people develop schizophrenia.

Indeed, high levels of copper have been reported in over 50% of schizophrenia cases.  I understand, just a little better, simply from doing this copper detox, a tiny little something of how that might feel.  I have wondered over the past few weeks if maybe I really am going crazy, even while knowing, in that small little watcher part of my brain that no, this is just detoxing.  I've been here before.  Just not quite as mental as this.  But I concede defeat - I can't continue on at the levels I've been doing this one.  The levels which are a one-size-fits-all on the bottle are too much, apparently, for me.  It takes a friend with CFS on the phone to convince me finally of this.

So I have cut my detoxing levels back to half the recommended levels. Because apart from having to deal with the psychological effects, this whole experience is taxing my already-depleted adrenal glands too, and so I am feeling like a car with too little oil - every little thing in my environment that changes, I feel the gears crunch and grind.  My adrenal glands are not properly manufacturing those beautiful, beautiful hormones, the ones which you don't even think about until they're not readily there.  The ones that enable you to float through your day, dealing with things in their proper context.  Not stressing out because you have to go to the supermarket.

I have found out that there is such a thing as a high copper personality.  Someone who tends to retain high levels of copper.  And that I pretty much fit the bill.  This feels like it's maybe one one of those big jigsaw puzzle pieces as to why I have not been able to regain enough energy post-CFS.  The at-home test for copper showed quite conclusively that I have high levels.  The other day I had a hair mineral analysis done, a  much more in-depth check to determine my copper levels.  I would bet a whole stack of money that the test will come back confirming what I have been experiencing as I have been detoxing.  This is a description of a high copper personality:

Positive traits include a warm, caring, sensitive, emotional nature, often with artistic orientation and a child-like quality. Often high-copper people are young-looking. Many traditionally feminine traits are associated with copper such as softness, gentleness and intuitiveness. This may relate to the qualities of metallic copper, which include softness, malleability and an excellent conductor of electricity.

When the personality is not fully integrated or the copper becomes too high, negative traits show up. These include spaciness, racing thoughts, living in a dream world and naiveté. Other qualities include childishness, excessive emotions, sentimentality, a tendency to depression, fearfulness, hidden anger and resentments, phobias, psychosis and violence. Artists, inventors and other high-copper types often "live on the edge", in part due to their high copper level.

The copper personality tends to accumulate copper easily. Copper can function as a psychological defense mechanism. It causes one to detach slightly from reality. This provides relief from stress for the sensitive individual. It works well as long as the copper does not become too high. Very high copper can cause a psychotic break from reality, a type of schizophrenia.

From DrWilson.com 

So, that's what I've been doing lately.  Struggling through this latest hellish thing which I know is going to help me in the long run.  But realising, finally, that it's just too much.  That I need to gear it down.  I have gained a respect for this damn mineral and just how destructive it can be to your psychological health.  Appreciative of how much better I am feeling after having a break from the whole thing yesterday (a birthday present for me).

I don't think you can really appreciate anything until you've lived on the underside of its tapestry.  I tell you what:  I appreciate mental health and a well-functioning body.  They are difficult things to maintain in this plastic-soaked world.  I appreciate knowledge and wisdom.  I appreciate extra pieces of the jigsaw puzzle. I appreciate peace.  I appreciate feeling up to writing here today.  I appreciate coming out the other side :)

Cuando el alma esta podrida by ekanss9 nebadon

Sometimes it doesn't matter how much you micromanage your life to deal with your high sensitivity/post-CFS/adrenal fatigue/stresshead/empath/bad health/inability to function in the world loserness..

You micromanage your life, but then you have to take calculated risks, because that's what life is, right?  Life is about living.  About not needing to micromanage all the time.  About jumping in.

And so seven months ago you take a calculated risk because it feels right, even though it is a stressful thing to do.  But then two weeks later, when you're still dealing with the stress because of your high sensitivity/post-CFS/adrenal fatigue/stresshead/empath/bad health/inability to function in the world loserness, out of left field comes something to stress you off the dial.  Your past, holding a remote control, presses a couple of buttons from 50km away, and so you are reminded that (a) getting rid of your past is not as easy as you would like it to be and (b) you can't remember what (b) was because you have no fucking memory.

Sometimes your health goes backwards in your quest to bring it forwards.  I had a hypoglycemic attack last night.  And so after eating two pieces of toast I didn't want to eat because I really wanted to make the stir fry I really wanted to eat but I couldn't because I thought I would melt into a puddle on the floor,, I lay on the couch for the rest of the night feeling fatigued, weak, and depressed.

I hate the world today.  But hating the world and feeling depressed are no-nos in the energy consciousness field - if I do that I'm dragging down the planetary consciousness sphere with my negative mental energy, man.  Because don't we all know - if we all just stay positive everything will change.

But maybe some things are never going to fucking change.

Connection/Dissociation

Been listening to Counting Crows this evening. I admire Adrian Duritz's sharing about his life with dissociative disorder. I imagine that would have been particularly gut wrenching to do so. I'm glad he did.

I find it really interesting how he describes dissociative disorder and performing as a particularly ill fit:

I have a fairly severe mental illness that makes it hard to do my job -- in fact, makes me totally ill suited for my job. I have a form of dissociative disorder that makes the world seem like it's not real, as if things aren't taking place. It's hard to explain, but you feel untethered.

And because nothing seems real, it's hard to connect with the world or the people in it because they're not there. You're not there. That's why I rarely saw my family back then: It's hard to care when everything feels as if it's taking place in your imagination. And if you're distant with people, especially women you're romantically involved with, they eventually leave.

What makes my case even worse is that every night I go out on stage and have this incredible emotional connection between me, the band, and the audience. Then, just like that, it's over. I go backstage, back to the bus, back to my hotel room, and sit there all by myself. That deep connection is yanked away in an instant. It's like breaking up with your girlfriend over and over again, every night.

Well, when you put it like that ... actually, fame has never been much of an appeal to me. I mean, sure, like most people I've indulged in fantasies about it. Especially at times when I'm feeling really bad, really raw. All that unconditional adulation - nice. At the same time, this sort of buffer between you and other people, like a mirage that sits between you, like a fur coat.

Except the emperor wears no clothes, and I think the knowledge of that would send me snorting substances up my nose to deal. That mirage would be a prison. Sitting in a prison on the shifting sands of other people's adulation and hatred - no thanks. I already have a couple of prisons of my own, thanks very much. Those will do.

My heart breaks when I think of how many people struggle with different mental illnesses. My homeless friend K suffers from some sort of undiagnosed disorder where she fades out, loses her memory. I feel some understanding of mental illness. I felt out of control in my teenage years from the things I was carrying, the deep dark hate, the covering over of it. I do not believe I had borderline personality disorder but I do believe I could have gone down that path if things had been different. Who knows? And I've got enough fuck-ups of my own to deal with, that's for sure. So many of us battle. It scares us so that we do not wish to talk about it, but humans are fragile things, and we break. I think our technology makes the situation even more dire these days.

Sometimes I wonder what things would look like if the knowledge was spread over the earth that God is a loving God, that there is wholeness in God, that there is healing and acceptance there. I think of that young bloke I saw at the train station a few months ago, screaming to the sky, "But I got nothin' to live for!" Is there something in his heart that is screaming for redemption? Something in every human heart that beats so tenderly but seems too good to be true.

I do think the reality of God is good enough to be true. Like a fairytale. I don't know know how my mental state would be if I hadn't fallen across God. Even just the concept of God, of redemption, of a pressure valve release. Hopefully I would have fallen across Buddhism instead. Otherwise I do not know, for me, how I would have coped.

My heart cries to God tonight for how hard this world is, and how much we despair, and how little hope there is and I wish God would wake us up. I wish the knowledge of God would fill the earth like water. It would wipe away our tears, swimming in God. It would heal our hearts and heal our minds. It would fill us so that we would be able to be god to each other, unhidden, naked, and unashamed.

It would be heaven.

You can read the rest of Adam's article here.

Pic: http://mavrixonline.com

Josef Fritzl, Human Monster?

So now Josef Fritzl begins his life imprisonment term and the newspapers begin asking, how could this have been prevented?

It always interests me that this is often the first question that is asked when something bad happens. As if you can systematise the human heart so that nobody is ever hurt or damaged or wounded by anybody else. As if we can outsource that sort of thing, and then be able to blame the corruption or inadequacy of our social services. Because by God, we need a scapegoat somewhere.

It's like the way we call Fritzl a "monster". Anything to distance him from us. He doesn't have the right to be called human, but rather a monster. Surely? He should be put to death, not allowed to breathe the air. He has removed from himself the right to be called human. That's what some say.

I disagree. Whenever I hear someone talking with such full-on anger and rage about how people like him should be put in front of the firing squad, I understand the rage and anger entirely but I also wonder about what shame the person who says such things is hiding. How much they have stuffed down in their soul because they don't know what else to do with it. The shame about the things that they have done themselves that they are ashamed of, in the dark. Oh, I'm pretty sure that the majority of people harbour different types of shame than the sort that locks your daughter in a dungeon for two decades and rapes her 3000 times. And yet, for all of that, I still think Josef Fritzl is entirely human. This is what a human is capable of. This and Mozart symphonies and the self-sacrifice of mothers for their children and raping each other and making art for free and mutilating yourself and helping a homeless person get back on their feet and demonising other people to make ourselves feel better and forgiving people over and over again and punishing other people for our own sins and writing great literature that speaks to the hearts of millions.

All of that is the human experience, surely? We can call the bad people who do the bad stuff "monsters". That way, when they say, as Fritzl said to the jury at his trial, "I am sorry from the bottom of my heart. I cannot take back what I did," we can disbelieve them. We don't want to believe that such a monster could have the ability to feel sorry for the crimes he has committed. We don't believe somebody who did something so awful as that, as to ruin the life of his daughter (and I can't even begin to think how utterly damaged she must be in a million different ways), could also be capable of repentence and sorrow. I wonder why that is?

Maybe it scares us to think that someone like that, who did what he did, could also feel the same things we feel. Maybe it brings someone like that just a little bit closer to us, ourselves and all the things we try to keep hidden away. Sure, they might not be in the same league, but shame is still shame and the darkness is still the darkness. It's just a matter of degrees.

At the other end of the spectrum, it seems to me from my personal experience that the pinnacle of humanity is loving each other, even when we see each other as we are. It is perhaps not a thing that comes easily to us, especially in the alienated sort of world we live in these days. Sometimes I wonder if the ability to love each other when seeing clearly is not even a human ability after all. But then what is human (and I ask from within a Christian perspective)? Is it us here and God over there? Is it us here and Josef Fritzl over there? Or is it God and Josef Fritzl both in here? That seems to make the most sense to me, but I just can't shake the thought that you can't have one without the other.

Edit: this all makes sense to me in my own brain. I have arrived at these thoughts in a logical sort of manner, at least inside my own head, and they're not by any means a reasoned-out-for-weeks-never-to-be-altered-again conclusion. What I would like to know is, do you agree, or disagree? What are your thoughts? How do you see it?

Stability

This four days a week at a boring job thing is alright when you stay in the moment, when you tether yourself to here. To now.

Which is a terribly difficult thing to do in our culture. Everywhere I look are people living in a way which seems almost designed to send us whirling into space. I've been reading the latest issue of Adbusters. Got two copies free for writing something on their website, which was kinda a pretty cool deal. Reading about how they say that in 20 years' time, mental illness will be the number one cause of death in our society. They were surmising that much of the reason for that will be that our societies have removed themselves from the natural world to such a ridiculous extent.

It's no secret that I love trees and nature. I don't understand people who don't immerse themselves regularly in it. We need it. We need the earth. We need to sink our hands in it, or our bare feet. We think we can do without the earth like we think we can do without God, but really we can do without neither. Planting my feet on the earth grounds me literally. I think the past few years have forced me to this position. I'm so grateful. I have fallen in love even deeper with the earth.

It's a painful thing having your eyes opened (ever so slowly) to the reality of things. It is God's inexorable push, to draw us towards the light of reality. He knows anything else is polluted air for us. The air of Christendom is so dirty. Removed from her grounded earthroots, how could it not be so? It shows in her fruit and in her endorsement of wars and governments that rape the poorest of the poor in the name of economic and social models.

My health has stabilised. It's Winter, and at least once a week I am feeling the tug of my immune system downwards as it sets itself up to fight off cold or flu marauders. Every day, I drink lemon juice and sink into the yellow as I'm squeezing it by hand. Every day I drink olive leaf extract and two cups of neem tea. Those three things have contributed to being in this heady place where the colds and flus are held at bay. You don't truly appreciate your immune system until it's been a stuff-up for years on end. You don't truly appreciate having glands that work properly until you've gone through extended periods where they're standing up like painful golfballs on the side of your neck.

Man, my heart softens for people who are stuck in the hell of ill health. Because this society is sick itself it has no heart for those who are struggling physically with illness (we get suckered into thinking our Western societies aren't so bad, but the evidence is all around, in the very air, in that country over there, that we are living in every way that is unsustainable. We can't see it because the very system itself blinds us and we wish to be kept blinded because we don't want to give up our stuff).

Papa knows how our stuff has almost suffocated us. I don't think s/he needs to preach about it. God doesn't need to stick it into a PowerPoint presentation for us to get it. Seems to be much more interested in showing us, in our own bodies, and minds, and hearts, and souls, through interaction with other people, with the earth, with touch, taste, smell and sight, so that the things we learn are the things we experience. You can't experience anything in a book.

This post is a ramble. But sometimes you get that.

Tonight I hope to begin writing about my dear couch Keanu :)

Diagnostics

I remember in the first year or so of having chronic fatigue syndrome, not knowing what was wrong with me, and feeling desperate to have some sort of diagnosis. What was wrong? Did I have cancer? Was I about to die? Had I flipped over into insanity? I had begun the journey into ill health with glandular fever, but this seemed slightly different. And yet it was hard to pin down what was wrong because ... oh, how to explain this? Everything seemed kinda surreal and distant, it was hard to tune into my body to be able to decipher whether what I was experiencing was in my head or in my body. Oh, I hate not being able to explain this. The reason why I felt this way is because my HPA axis was playing up and so it was basically starting to feel to me on a deciphering level that my body had started speaking Swahili and hadn't clued me into it, and so it was very easy for me to sit down at the end of the day absolutely bone-tired exhausted, the marrow having seeped out from just having a normal really ultra low-level day, and wonder if it was all in my head. Now that's what I call creepy.

So being in that kind of state and having all this really weird stuff going on and not having any idea what the problem was, I was absolutely desperate to get a diagnosis. I needed someone to tell me that it looked like I had X because then I could go about trying to fix it. But to not know what the problem is? Well, I spend a great deal of my life these days not knowing what the problems are and growing in the ability to sit tight in God without having the answers - despite glitches in the matrix that send me into a spin, as evidenced on this blog this week and in my heart and mind on a daily and sometimes hourly basis. I think part of the ability to sit tight in God is pure necessity, knowing how little I really do know, but part of it comes from experience. I know that in that horrid, horrible experience of not knowing and of having to throw myself onto God because there was nothing else that I could do, just how good losing your life to save it feels.

I think for someone who is not a control freak with other people, I'm a bit of a control freak with myself. I think we all are. We are so desperate for diagnoses to our problems that we grab hold of them with both hands and squeeze so tight that they become distorted out of shape so our diagnosis will be inaccurate anyway, wrought out of our fear.

The words of Jesus came into my head yesterday about how it is that hearing of wars and rumours of wars should not frighten us. And it was the final seal on the haranguing I've been doing within myself this week about what I can do in the midst of all the suffering in the parts of the world that are way less lucky than we are. And I have finally come back to the conclusion that all that I can do is go on in my own life, focussing outwards on others, praying, sticking closer to the one who sticks closer than a friend - because I need to, because if I walk too far away from him I walk into my own anxiety and stress and brokenness, and there is too much of it there at the moment to walk very far away without it sending me reeling around like some kinda jack in the box on a crystal meth high. I'm so grateful that I can't walk too far. I'm grateful.

Anyway, what was I saying? That's right. Diagnostics. So getting a diagnosis of my condition was an absolute necessary step towards beginning to know what to do. But still, in another way, it was probably absolutely unnecessary except for my own mental health. Because God would have directed me to what I needed to do anyway. I am convinced that if I was of a stronger mind, or faith, or vision, I could have gone about fixing my problem purely out of following what resonated for me, or, in slightly less creepy terms, of what was speaking life to me, of sensing the Father's voice as my rudder. But of course, to do that, I would have had to have gone down roads that seemed counter-intuitive, perhaps even wrong. I certainly would have had to go against the conventional wisdom held to so strongly by the medical profession.

And this is where diagnostics fall down. The medical profession contains a great deal of corruption within it, because of the absolute power that pharamaceutical companies hold. I also believe, without a skerrick of evidence necessary, that many of the things the medical profession touts as absolute truth is probably absolutely wrong. Because that's how history has gone. A new piece of God's 78 billion piece jigsaw puzzle emerges, and the frail humans realise that while they were seeing reality in very real ways, this new piece suddenly makes this piece over here obsolete in the light of new knowledge. It's surely the heart of science to continuously discard old knowledge in the light of new evidence.

Which is great. But unfortunately, it's also at the heart of systems like the medical one to garner corruption, to be ruled by pharmaceutical companies, to give the impression that they know it all and there is no new knowledge to be had. Because that's another human trait. We don't know it all, but we can very easily be fooled into thinking that we do. Surely we must. Otherwise those six years plus at university and that massive, massive debt that's taking years to pay off for the prestige of calling ourselves general practitioners would all be worth far less, wouldn't it? It would start to feel a bit lurchy, a bit less certain. And the world is lurching so terribly, and many hearts along with it, that surely there are still pockets of safety we can take in those things that we know to be true?

Well, yes, we can. I did. My diagnosis was a great thing for me and gave me a great deal of comfort, and gave me a battle plan of sorts so that I knew what new things I needed to try in order to get well. But for all I know, I could have sat there and done nothing and got well anyway. Because I'm not into controlling other people, but man, I'm a bit of a control freak when it comes to myself. And I am really only starting to realise the extent that that runs down. (Which I guess is cool, 'cause it probably means it's gonna get itself blown to smithereens sometime soon, or at least part of itself. Cool).

So diagnostics. Even knowing things, and getting a frame of reference, we still have to hang on lightly to knowing them, because diagnoses change. I have to keep reminding myself now that I am well, because I suspect that part of me, the part that hung on so desperately to a diagnosis, is maybe finding it hard to let go of that diagnosis, even though I know now that I am well. I'm not sure if that makes much sense, or even how much of it is true or informing me, if at all, but I think it's probably got something to do with the reason why Jesus asked the dude by the pool if he wanted to be well. We get so stuck in our diagnoses of ourselves that sometimes we can't see the fields ahead.

If I had framed my life so tightly when my marriage broke down that this was a marriage breakup and when that happens X happens and then Y happens and then Z happens, then I wouldn't have been able to tune into the (I believe) God-infused, quite amazing process of two broken-down people with a great deal of love and respect for each other being able to go through such a painful, awful, horrid situation for both of us, and coming out the other end with a friendship that I value so highly that it's almost priceless.

Hold on loosely to everything, except God. This is my mantra for myself.

My glands are standing up on the side of my neck because it's overcast and I still don't really understand what that's all about, but anyway, Happy Saturday, bloggers :)

Medicalised mysticism

Perhaps why I identify with Francis of Assisi so ;) Hehe (HT to The Website of Unknowing):

Straightjacket Needed in Assisi

I think sanity and insanity are fluid constructs, and maybe we all flow regularly in and out of each state. All of us.

But maybe God's holy fools need these days to be prepared to go to a psychiatric institution rather than to prison :)

Voices Inside My Head

When I was a kid, I was a bit of a daydreamer. I spent a fair bit of time staring into space. For a man who was feeling driven by many things and who expressed himself by doing, this kid must have been some sort of weird anomaly to my Dad. Surely she didn't come from his loins.

And so I copped a fair dose of "You're lazy" throughout my young years. I don't have any sharp conscious memories of being told that, but I know I did because it's become one of those tapes we play inside our heads, that remain there unnoticed until we cast our gaze on them and root their messages out.

I was talking to my friend on the phone the other day about this very thing. I felt like a hypocrite at the advice I was giving to her, considering I haven't learnt all the lessons myself yet (but maybe a hypocrite on the road to recovery is the best type of person to give advice). She was bemoaning how she felt like she was being lazy if she considered giving up the voluntary work she's doing for an hour a week, helping a Burmese woman learn English. This is a friend who is ill, unable to work even part-time at this point of time, who is on a shitload of antibiotics to kill off the things that have been keeping her sick, and there is no way known laziness is coming into the equation.

But logic is overridden by those voices inside our heads. I have become much more intimately acquainted with the tenor of that lazy voice, grappling with it when I was ill for those 6+ years with CFS, fighting it like it was a tiger. I had to. It was a big step towards my recovery - or at the very least, made my recovery a much more relaxing process where I could even enjoy some things.

It seems patently ridiculous now, but entirely obvious given those tapes that my father carelessly put in there, that when I was at my most ill I would, even while I was dragging myself out of bed to have a shower, dragging myself back to bed to recover from the ordeal of that before dragging myself out again to make myself something to eat, at the same time be dealing with a low-level, vague underlying feeling that maybe I just wasn't trying hard enough. Maybe I was being lazy.

How ridiculous is that? But still, maybe no more ridiculous than the tapes playing inside your head :). We all do it to varying degrees.

That CFS lesson was a big one. I did grapple that tiger to a large extent, forced it to the ground. By the tail end of my illness I was beginning to revel in the delightfully cosy feeling that occurred when I would walk myself through the logic of why it was that I wasn't lazy, but was ill, and that the best thing I could do for myself and my health was to lie on the couch all afternoon, despite what the internal tape message whispered. This was an ongoing process for me. I basically had to do it every day, this conscious reminding myself, going through the steps of why it was that I was on the couch, and how it was that I needed to rest.

The tiger is still there. It's been grappled, and it's toothless and made of paper, but it still exists in the ruts of my mind. Maybe one day it will disappear in a cloud of tigerish smoke, but for now, the best thing is to be aware that it is still there, informing my emotions. Sometimes I forget.

I am on week 9 of The Artist's Way. One of the tasks for this week is to read back over my morning pages - the three pages of longhand I do upon wakening first thing in the morning. They are quite invaluable for insight, these pages, even though they are quite boring. Much of what I write in there is surface level urgency, blathering, getting stuff off my chest, the stuff that is uppermost in my mind, often the negative stuff. What I noticed in there that I complained about the most was that over the past two months I have consistently not been doing enough centreing prayer and I have consistently not been having enough sleep. I have also been consistently fighting off ill health in one shape or another. Except that's been going on for six months.

Looking back, I have realised that since September I have battled tracheitis (the asthmatic after effects which still linger in occasion), followed by colon cleansing and parasite cleansing, followed by a month-long low-level virus. So much for being well :) This girl who has recovered from CFS apparently still has a fair way to go to get to good health. But I forget this.

And so yesterday, when I lay down to watch a movie (Paris, Texas, a Wim Wenders movie, Kentster - t'was good) I had to go through the rigmarole again of telling myself that I wasn't lying down in the middle of the day to watch a movie because I'm lazy and inherently morally deficient. I was lying down in the middle of the day because my body was telling me to, because it is recovering from basically six months of being tossed to and fro, whether by external viral forces or by my own detoxing forces. And it's feeling weak. (Our society does not teach us to listen to our bodies, nosiree. It teaches us to ignore them. Dangerous place to be).

Last night I started feeling better. Maybe it's the vitamin C I've been taking - 4 grams a day for the past 2 days - but last night I got a bit of a giddy-up of energy. And what did I do? I got up, cleaned up the house, did some more filing, cleaned up the absolutely ginormous pile of clothes sitting in my bedroom threatening to topple on me in the night, asphyxiation by cotton. And as I was doing all of these things, it was like one more repudiation to the toothless paper tiger that
I am so certainly not lazy. I'm a pondering mystical meditative, but just 'cause you're sitting on the couch staring into space ... that is work of a different kind to the physical - but by God, it's still work!

The tiger still roars, though. Just not as loudly. I recognise it earlier as something separate to me. It does, however, share my living space. I have got used to that. It's a long-term visitor but it isn't, after all, a permanent resident :)

Happy Sunday, bloggers :)

Portable Peace

I was sitting out on that lovely back porch yesterday morning, meditating on God (or trying to - damn bloody monkey mind, just drives me damn mad), and thinking about how I didn't want to leave, but that I didn't want to be grabbing onto that place and time either. In my new state as a Zen Universalist Christian :) I am trying to be non-grabbing, accepting of whatever comes along, non-resistant. I am finding that everything flows better when I do this, seeing a great wad of my distress at any one time lies in the energy I'm expending trying to not feel whatever it is I'm feeling. Weird.

But this morning I'm feeling like I don't want to be here, I want to be back there. I don't want to have to go out today, even though I am catching up with my cousin from interstate and it will be luvverly to see her and her kids and I will have a good time but ... yeah. (I think I need some time by myself. I have been with other flesh-and-blood humans for four days and it's time for some solitude. Later).

Last night when we drove back into Melbourne I translated nicely. In the past, driving back into the city has been so jarring that on more than one occasion I have had to hold back tears, feeling like a silly big baby. But it just smells and it's ugly, that's all!!

But this morning, I would much rather be in that cottage with its sensual bits in every corner, and its life, and its TS Elliott book of poetry (I read Four Quartets in its entirety again over the weekend - noice!) But I'm not there; I'm here. I don't want to waste this day looking inward wishing it was yesterday. If I do, I might miss something good happening today. And I will miss God, who doesn't seem to be much interested in inhabiting any of my daydreams about yesterday, last month, or next month. Apparently tomorrow has cares of its own and this day has enough stuff in it to keep me satisfied, if only I would slow down enough to see.

I know this. But I've forgotten it this morning. But I think the thing is, it's not a place or particular things I am wanting (although that oak tree ... well, you know about me and trees). All of those things are lovely, but their peace is still accessible to me, because ultimately that peace is about God. And sometimes (often/occasionally/constantly/rarely - strike out whichever is applicable) I forget all over again that he is enough, that he is even better than the things. He made the things.

Today. Today is enough. But still ... yesterday smelled so much better.

Chesterton

Came across the Chesterton quote from this blog:

"It is true that some speak lightly and loosely of insanity as in itself attractive. But a moment's thought will show that if disease is beautiful, it is generally some one else's disease. A blind man may be picturesque; but it requires two eyes to see the picture. And similarly even the wildest poetry of insanity can only be enjoyed by the sane. To the insane man his insanity is quite prosaic, because it is quite true. A man who thinks himself a chicken is to himself as ordinary as a chicken. A man who thinks he is a bit of glass is to himself as dull as a bit of glass. It is the homogeneity of his mind which makes him dull, and which makes him mad. It is only because we see the irony of his idea that we think him even amusing; it is only because he does not see the irony of his idea that he is put in Hanwell at all. In short, oddities only strike ordinary people. Oddities do not strike odd people. This is why ordinary people have a much more exciting time; while odd people are always complaining of the dulness of life. This is also why the new novels die so quickly, and why the old fairy tales endure for ever. The old fairy tale makes the hero a normal human boy; it is his adventures that are startling; they startle him because he is normal. But in the modern psychological novel the hero is abnormal; the centre is not central. Hence the fiercest adventures fail to affect him adequately, and the book is monotonous. You can make a story out of a hero among dragons; but not out of a dragon among dragons. The fairy tale discusses what a sane man will do in a mad world. The sober realistic novel of to-day discusses what an essential lunatic will do in a dull world."

GK Chesterton


I need to be getting me some reading of his nonfiction stuff. The quote, from Orthodoxy, spoke to me not only of writing, but also of my inherent weirdness. People have always told me I'm weird. I like that different drummer's sound. Is that the same as odd? Next time I feel like the world is dull, I'll know why ;)

But still, most of the time I'm filled with wonder for the world ... or at least for the reality beyond the world. So what does that mean? That I have lapses into temporary insanity? Well, don't we all??

The tagline for my emails at the moment is another quote of Chesterton's, which I just love:

"Fairy tales don't teach children that monsters exist. Children already know that monsters exist. Fairy tales teach children that monsters can be killed."

Self-Nurturing

I developed my love for cooking, paradoxically, when I was sick with chronic fatigue syndrome and cooking a meal sometimes took up all the off-the-couch energy I had for the day. It fulfilled two needs I had: (1) it helped me feel in some vague way that I was still useful for something; my life may have become stuck in the toilet, but I could still cook my husband a meal every night. But also, (2), I realised how powerfully self-nurturing it was. And a creative one at that (my creativity being sorely limited, but my desire to create intact). And I got to eat my creativity after I messed around with it in bowls and frying pans. I began taking great delight in finding out what the best things were to feed my body with and then to prepare them myself.

Today I have been trying to do the same sort of thing, but in my thoughts. I am rereading a pretty cool little tome called Slowing Down to the Speed of Life which in very basic terms is really about how our thoughts are our expression of reality, rather than reality itself. I get so caught up in my own negative thinking at times. Lately it has been almost impossible to not think negatively.

But today, I sat outside, and got a bit of sun, and started entering in by counting my blessings. It sounds a bit wanky even writing that - but gee, it's not a cliche for nothing. I also began telling myself some things to try to give myself a bit of psychic space. I found it a profound pain in the bum when I was ill that, even though I had very little that I actually had to accomplish each day, I always felt rushed off my feet, as though someone somewhere (probably that inner Puritan again) was trying to get me to move on, to do something, to cross off something on my to-do list. It's a real disservice to yourself when you're ill to think that way - and yet, here I am doing it again. Perhaps it's some kind of crazy way to try to maintain control when you're feeling a bit out of control (sickness is the ultimate loss of control, I guess).

It feels so basic, so 101, to sit and tell myself that it's okay, that I can slow down. But apparently I need to do it. So, I am trying to paint in my own head the kinds of thoughts that will give me the mental equivalent of rolling hills and trees and far horizons. It feels kinda nice, actually. Like I'm being kind to myself. It also reminds me of how powerful my own thoughts are.

This is a frustration to me, because it means that I have responsibility for my thoughts and whether they're crap. And that's a bit of a bummer ;) I don't want to take responsibility. I want God to come along and Gandalf new good thoughts for me. The paradox of taking responsibility for my own thoughts is I am in control more than I realise. And while that sometimes feels like a bad thing to my inner Tantrum Child, ultimately it's totally amazing.

How strange life is.