"I said to my soul be still..."

I've chosen to begin with a sombre poem.  The Wasteland is a sombre place.  Recognising the reflection of my own state in someone else's words was a comfort: I was not alone after all, and there were words for it.  Here they are:
I said to my soul, be still, and wait without hope
For hope would be for the wrong thing; wait without love
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
For the darkness shall be the light, and the stillness the dancing.
Whisper of running streams, and winter lightning.
The wild thyme unseen and the wild strawberry,
The laughter in the garden, echoed ecstasy
Not lost, but requiring, pointing to the agony
Of death and birth.

You say I am repeating
Something I have said before. I shall say it again.
Shall I say it again?  In order to arrive there,
To arrive where you are, to get from where you are not,
You must go by a way wherein there is no ecstasy.
In order to arrive at what you do not know
You must go by a way which is the way of ignorance.
In order to possess what you do not possess
You must go by the way of dispossession.
In order to arrive at what you are not
You must go through the way in which you are not.
And what you do not know is the only thing you know
And what you own is what you do not own
And where you are is where you are not.
This extract is from Part Three of T.S. Eliot's poem, "East Coker". 

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The Wasteland ~ a geography

The wasteland ~ a geography

T.S. Eliot's poem, East Coker, as quoted in the previous entry, describes perfectly the geography of what I call the wasteland.  I came across it when I was in the depths of my own wasteland, a deeply troubled inner world.  When I read it I wept.  These were tears of recognition, of relief at reading words that someone else had found for a state that is largely indescribable.  When I read it now, some ten years later, the tears still well up.  East Coker is one of a set of poems referred to as "The four quartets".  I wonder what experiences in Eliot's life fuelled their creation.

Many things propel us into the actions we choose in life.  It was a conversation with a friend a week or so ago that decided me on setting up this chronicle.  He and I have been through parallel wastelands; our circumstance and troubles had different roots, but the task of getting through those experiences, of surviving, threw us both back on the last vestiges of our strength and for each it was a very narrow pass.  Few can accompany a person in such extremity, and we were fortunate indeed that our friendship endured, fortunate also that we were not traversing the wasteland at the same time.  We emerged much altered and both agreed it would have been helpful to have known a few of the things then that we know now - about the nature of the wasteland, and a few pointers on how to get through it more or less intact.

For me recovery is ongoing.   There is much I still don't understand.  I have struggled to find words for it, and even now talking about it seems almost impossible.  Hopefully I can articulate some of it here so that it makes sense to others which may also help me make sense of it.  This may sound back-to-front, but it needs to be: just as a mirror shows the reverse image of the viewer.  Without communicating some of what happened that part of me remains isolated and snowbound.

I often recognise the signs of extreme experience in others: I see the tracks which shock, rage, terror and grief have written on their countenance, not in a disfiguring way but in the nuance of expression and in their bearing, a certain remote otherness.  The watcher within is wary.  I can stand alongside them and say "I know."  Yet for the most part these people look so very ordinary.  We would pass them on the street or in the supermarket without any such flicker of recognition.  How many there are...

The wasteland seems trackless and endless and the odds insurmountable, but if we have the right prompts and support we can gradually begin to make sense of things, and as we do so, the intensity of our suffering gradually loosens.

Although I won't go into much detail about what landed me in the wasteland, I will share some small part of it along with insights and suggestions that may be helpful to others.

I've written the articles in five cohesive groups, as shown in the blog archive to the right.  Articles should be able to be read individually or in sequence, depending on your interest.  I've used the labels system like an index so that relevant articles can be easily identified and accessed.

To those of you who are at present in the wasteland I wish you safe journey, and to those who stand friend to you, patience.

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Descent into the Wasteland ~ the falling tower

Descent into the wasteland ~ the falling tower

The falling tower is used here as a metaphor for everything falling apart.  There are many ways we can experience disaster, trauma and ruinous loss: through illness, accident, political or societal injustice, upheavals of the natural world, economic woes, abuse, crime, warfare, loss of loved ones, or just plain disillusionment.

If this sounds like you, it may seem that you've been reduced to nothing, or as close to it as makes no difference.  Sometimes loss and trauma is visible and public, and sometimes it's private.  Either way it's something that has to be lived through - no one else can do that for us.  Nor should they.

You may feel bad if you've fallen apart in a situation which has not affected others the same way.  If so, it may be helpful to remember that  adversity affects each of us differently: what one person takes in their stride may cripple another; we're all different, have different temperaments and capabilities, and different challenges.  Comparing yourself unfavourably with others will just get in the way of you gradually getting back on your feet.

Battling on unassisted with the intention of toughing things out is also unlikely to be helpful: while it will work some of the time this approach may lead to more damage and more to come to terms with further down the track.

On the other hand, acknowledging the extent of your difficulties and beginning to sort through them - with the right support, is helpful and will enable you to begin finding the road back to something approaching 'normal'.

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My falling tower ~ what happened to me

My falling tower ~ what happened to me

Several aspects of my life had me heading for a blow-out: I was working far too hard and far too seriously at a job with which I felt increasingly at odds, at the same time as dancing attendance on a New Age 'healer' whose demands became more incessant over time.  I became not just drained but exhausted in more ways than one.  In a weakened state I succumbed to a flu-like illness after which I did not seem to regain my vitality.

As my situation worsened I re-examined not only my beliefs but also my values; I carefully re-considered what had been going on and what was expected of me.  I came to see much I didn't like and even more that seemed faulty.  By then I was not only exhausted but also increasingly troubled and depressed.

I broke off my association with the 'healer' and struggled on at work but finally became unable to continue and resigned, saying I needed a change and some rest.  I had no idea then how unwell I was.  I expected that with a bit of time to myself things would come right, maybe in three to six months after which I'd be able to move on to something new.  If only that had been the case!

My world was disintegrating: no longer able to work I lost my income and with it status; a whole social setting which I had thought entirely dependable, disintegrated piece by painful piece; and away from the structure and normalising effect of everyday work my health and general state deteriorated.  All my adult life I had carefully acquired coping mechanisms, but at that point none of them worked any more - not at all.

I needed to go home, but where was it?  I moved back to my home town which I'd been away from for twenty years, with the result that I knew hardly anyone there, still less the professionals from whom I needed help. 

The accumulated shock was unbelievably severe and as the shock waves within me repeated and deepened I came very close to losing my mind.  I felt dislocated and disoriented and had difficulty in thinking in more than the simplest terms.

I didn't understand what had happened to me or see what I could possibly believe in any more. The future seemed so completely blank I wondered if I might be going to die - perhaps I'd 'done it all'.  I had no idea whatsoever of what life could hold for me or what I could or should do, and so on and so on.  I found myself answering polite, kindly enquiries with same answer: "I don't know", "I don't know", "I don't know".

My brain didn't seem to function as it should and hurt most of the time, my whole nervous system felt tinder dry.  Not surprisingly my digestion became troublesome and could cope only with the blandest of foods.  Often when I went out I felt faint and nauseous; there were times when walking to the letterbox and back required effort and concentration.

Exhausted as I was I became afraid to fall asleep, my dreams were so fraught with terrors and catastrophes.  I'd toss and turn in bed, my skin disturbed by itching and twitching which constantly moved, and often, just as I was falling asleep, I'd find myself jerking awake.

Emotionally I discovered the depths of feelings I hadn't guessed I had: volcanic rage which congealed into a weird sort of semi-numb despair only to re-erupt unpredictably, ice cold hatred, grief which vacillated from lengthy spells in which I simply leaked tears, to stark emptiness, and the endless questions which hung unanswered: what was the matter with me, how had this happened to me, how had I let this happen to me, and perhaps most anxiously of all: was it ever going to end?

That was my falling tower.  I was on my own. 

Well, not quite: I was immensely fortunate that my family, partner and one particular friend stood by me.  I was exceedingly hard to help, but I knew that they were there.  They watched over me, and kept on loving me even when I was at my most miserable and incomprehensible, not intrusively but they were there.  A few times I phoned my friend and asked him to come right away which he did.  He talked to me quietly until I calmed down.

Isolated, ill and flinching from contact I turned to nature for solace: the big trees around the house, the stream at the bottom of the garden, and the birds.  Thus began my very gradual recovery.  At that time I had no concept of how long it would take - which was a another problem altogether.

Looking back I can see the threefold symptoms of burnout, chronic fatigue syndrome and acute stress disorder staring me full in the face.  I now also know that two instances of trauma experienced earlier in my life made me vulnerable to developing post-traumatic stress disorder.  But these insights came only gradually and not from any expected source.  If only I had stopped trying to keep things afloat earlier, as trying to push on regardless just made everything worse.  If only I had had adequate professional help.

I still can't properly understand why I was so devastated, other than in a mildly intellectual way.  In emotional terms I can't explain it - but there it was, and is!  I'm still attempting to find answers.   Sharing what I have learnt about the Wasteland experience is part of that quest - to see things more clearly.

It is also driven by a considerable amount of anger, that it was so difficult and that the people whose job it is to make these things easier, were for the most part conspicuously absent, or if present were seriously deficient in providing the sort of basic information and insight that I am setting out here.

When these sorts of crises and disasters happen in our own lives we feel sure we are alone, the only one, and that no one else could possibly understand, but in fact masses of people go through this sort of thing, and I hope that what I have learnt may be of some help to others.

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Wasteland companions 

Wasteland companions

Although traversing the wasteland is essentially a solitary experience a small number of people may serve as companions.  These are friends but not in the usual sense, as friendship is more commonly based on mutual sharing and support which is likely to be impossible at such a time.  Part of how they help will be by being 'normal' with you - you can relax with them in a way your can't with others because you don't have to pretend to be okay and because you know you are safe.  They are like the tent pegs which hold up the tent, just by being themselves and continuing to be in touch.  They will try to understand.  They may not do so, but they will try.  Don't be angry when they don't - they are at any rate on your side.   They have a vital role to play so treat them well and recognise that they, like you, have needs.

There may be up to four such people.  More than that is likely to be too many, and fewer may result in too much pressure on too few.

People who go through traumatic experiences often say: "I found out who my real friends were" with the implication that not many continued to be in touch.  When I was most unwell this certainly seemed to be the case; I was upset at what seemed like the indifference and defection of those I thought I had been close to and could count on.  I now see this differently: it's the nature of such situations.  This doesn't mean that others drop our friendship, but rather that they can't be our companions at this time, just as we might not be the right companions for them if they were the ones in crisis.  It's important to recognise this so that we don't break off connections with good people who are simply not accompanying us on this part of our journey.  Time will tell if they are there for you in the long run, and those who stick around may not be the ones you expect.  Others will drift away, which is natural.  In any case you will be a different person when you emerge back into a more normal world, and may be looking for different qualities in those around you.

Ideally there are some professionals who can also provide help:
A doctor: In any extreme situation we need to know we have a doctor who can contribute their expertise and advice.   I left a superb doctor behind when I moved cities, and not knowing or being known by anyone comparable in my home town almost crushed me.

A legal person: lawyer/solicitor: When distressed and unwell it's not a good time to make big decisions yet often we have to.
     At such a time one can so easily be parted from considerable chunks of savings, investments and valuables, if only because in our crisis we are unable to think clearly about these sorts of issues.
     It's often easier to walk away than to stand up for our rights.  I encourage you to at least find out what these are.  For example, if you've had workplace issues you may have the right to legal redress.  In New Zealand, employers now have a level of responsibility for the well-being of staff.  I suggest you hold onto your end of the scales and resist the temptation to enter into these sorts of discussions without proper legal advice and support.  It also makes sense not to talk too much about any other difficulties you may be having elsewhere as this can cloud the issue and put you at a disadvantage; when we are in a state of crisis we easily lose perspective and in hindsight may see things quite differently.
     Decisions made at these times can have a huge impact on our lives for many years to come, so it can be really helpful to have a good legal person on your side.  A knowledgeable lawyer or solicitor should be able to advise you and act for you if you wish.  If you are unable to afford the cost you may be able to apply for free legal aid.
      Again, I didn't have this support, and so created additional handicaps for myself.

A therapist, counsellor, or spiritual adviser: indispensable.  I now have one who is just right for me.  When things were at their worst I did not.  There were good reasons why I didn't seek one out sooner, and now that I have this support it's an immense help.  If you are looking for one and make a choice of helper who turns out not to feel right don't give up - try someone else!  Even the best therapist may not be the right match for you, and finding that right match is the essence of a good working relationship in this exceptionally sensitive area.  I didn't get it right the first time, and it was a great relief to stop what wasn't working and look further.  If you can't afford the expense you may find you can get funding for it from a government agency.

An advocate: someone to go with you to any or all of these people or any others you may have to engage with, such as welfare agencies and the like, to act as a support person, to hear what is said, to take your part, and to see you through the process.  A friend or family member may be able to do this for you, or a local support group or welfare agency may provide one.  Don't be afraid to ask.
     The Health and Disability Advocacy service has recently been brought to my attention.  I wish I had known of it sooner.  This document about your rights as a consumer of health and or disability services is useful information.  If you are looking for the original link or want to read it in a different language this document is posted here.

Getting help through agencies when we are in crisis can be a seriously upsetting and humiliating business.  Don't do it alone if you can help it. And do persevere in getting what you need.  It won't come to you on a platter but it is important to get every scrap of support you can.  I can't emphasise this enough! It may not seem like it at the time, but every little bit helps and in the long run it may make a much greater difference than you expect, especially if your recovery turns out to take a lot of time, as mine has.  Good luck.

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Staying safe and setting boundaries

Staying safe and setting boundaries

I see loss of control over personal boundaries as a central factor in trauma which makes the sufferer much more vulnerable than usual.  These boundaries may take some time to become re-established and while recovery is under way we need to be much more careful than usual about our safety.

It's sensible to use our sense of safety as a guide when considering what to do and with whom. If you're not sure what to do, I suggest you opt to stay safe.  Do what is necessary but don't expose yourself to anything that makes you more vulnerable than you already are or puts you in a situation where you might be - you already have more than enough to deal with.  If such a situation is unavoidable try to have a support person with you.  Here is where you can begin to be back in charge - by looking after yourself!

At the time that I was most unwell some dangers were real in a practical sense and other lesser disturbances perceived as such.

I did put myself in danger of worsening my own extremely vulnerable situation by attempting to battle on unassisted when I lacked the judgement to do so.  At the same time I was aware of teetering on the brink of losing control of my mind which I knew could happen if I surrendered to the anguish and rage within, or allowed myself to dwell too much on what had gone wrong.  Also, I knew I was in danger of alienating those few who provided me with a semblance of support by behaviour which was too anti-social or demanding.  These dangers were very real.

A different sort of danger arose from my own extreme state which made me hyper-sensitive to absolutely everything.  This made the sense of being invaded and overwhelmed by various incidents and influences much greater than was realistic; I started at shadows which were to some degree the spooks of my own distorting fear and the effect of sensory overload on already overwrought nervous system.

Those we come across in the course of our everyday lives often lack perception and are much less helpful than we would wish.  Mostly this doesn't greatly matter since we can correct the balance through applying our native survival instincts.

When I most needed help any instincts of this variety had become either too visceral to be allowed expression or so watered down and lacking in focus as to make useful communication impossible, thus in the presence of doctors, bureaucrats and other official helpers I tended to be speechless, tearful, or to prattle on about irrelevancies.  That these professionals were for the most part unable to bridge the gap increased my distress, that and my own manifest inadequacies.  I often wished I hadn't tried. 

My personal boundaries had been shattered and with them my ability to look after my own best interests: I needed help, but had great difficulty locating it, asking for it if it could be found, and receiving it if it was offered and available.

So if you find yourself in similar strife it may be useful to focus on staying safe and to remind yourself how proper boundaries usually work - with all the usual imperfections.  Hang in there!

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Staying safe with personal disclosure 

Staying safe with personal disclosure

In the midst of a crisis, be it long or short, personal disclosure can be a confusing and troublesome area, so I urge you to think carefully about what you disclose and to whom. 

When our lives are in acute disarray there may be a tendency to 'spill' very personal information at length to all manner of contacts; at such a time our boundaries are likely to be in tatters and the internal pressure to talk about our troubles intense.  Yes, it's a good idea to talk, but it is in your best interests to exercise care and restraint as to who you choose to do that with for two reasons: firstly, too much information about our troubles swamps people who may not have earned that place in our lives, or want it, and who may then begin to distance us; secondly, in some instances it gives those in authority levers of influence they wouldn't otherwise have.  Further down the track when you've cooled off a bit you'll be glad you did, or possibly regret that you didn't!  I've made this mistake repeatedly and seen others do the same.  If you're upset and indisposed, there are very few people to whom you actually owe an explanation.

If you have good reason to disclose more than superficial detail it may be useful to start by describing facts rather than feelings, for example not getting enough sleep, or having a lot of headaches, or noticing that you've been 'a bit irritable lately', and so on.  These are ordinary things that most people can relate to and aren't all that personal.  In my search for the right doctor I repeatedly found myself tied up in anxious inarticulate knots and gabbing on about personal issues which often reduced me to tears, when I could have made myself very much clearer - and got better help, by describing physical symptoms instead.  Regardless of who you're talking to, if you take this approach it will give you time to see what sort of response you're getting and also time to decide whether you then feel safe saying more - if you want to, or if it seems likely to be useful. 

A word about answering 'official' questions, particularly on forms and in interviews: be aware that it may be simpler to decline to answer some questions than to sort out later whether or not certain personal information is kept on file.  A decline may not be challenged whereas getting information removed when you later decide you don't want it kept on record may be impossible.  Having said that, some agencies may find that they are 'unable to provide the usual services' unless 'mandatory information' is provided.  Well, so be it, but you may wish to find out exactly what is mandatory, how your information is to be stored and for how long, and so on.  Most people don't ask these questions but it is reasonable to do so - it's about you.

At the more mundane end of the scale are the small, usually inconsequential exchanges we have when we greet each other.  Being asked how we are is part of this and in New Zealand it's usually a greeting and a conversational gambit only, not a real question at all.   The accepted response is "Fine, thank you" and if you're really polite this is followed by "And you?" Everyone is usually "Fine", a polite fiction which we exchange along with polite smiles.  

While I must say I find this sort of exchange somewhat bizarre it works well enough most of the time with the exception of when we are quite otherwise.  At such a time saying we are fine is likely to make us feel positively surreal, so what can we say that isn't going to make us feel a whole lot worse?  The odds are that we won't feel inclined to talk about how we really are.  Think about what works for you and have it ready so that rather than feeling cornered, you can pick how much you want to disclose and to whom.  Bear firmly in mind that most people really aren't interested - and may even become alarmed if you tell them more than they are expecting! 

People who are nosy and not concerned about our well-being at all can be difficult to deal with.  If you're off work and don't want to disclose that you're unwell you could say that you have leave of absence from work; are taking time out; have retired; are on sabbatical, or writing a book...  This last one can be particularly handy as writers don't usually talk about what it is they're writing!

If conversing with someone who makes you uncomfortable by trying to look you in the eye, you may wish to focus your gaze on the end of their nose; this gives the appearance of meeting a persons gaze while giving you a little more personal space. 

I find it hardest to know what to disclose to long-term acquaintances such as my landlord and neighbours, people I like well enough and chat to fairly often but would not describe as friends.  Do they need to know about my personal life?  The answer has to be 'No', but it can be helpful to acknowledge in part why certain things are the way they are, and in my case this has resulted in offers of help - which I usually don't accept, but it's nice to know who I could call on if I chose to. 

Sharing a modicum of information eases things for everyone and reduces our isolation.  The better acquainted we are with those around us, the more worthwhile it will be to put some effort into getting this level of communication to where it's comfortable - for you.  You're in charge.  Go gently, stay safe.

 
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Part 2 ~ Medical and health considerations