A breach of trust

I am an ACC Sensitive Claimant.  That means ACC, a government department, partially funds my therapy costs.  It also means that Allison has to regularly report on my progress, and sends requests for more funding.

When I first claimed for assistance under the ACC scheme, I was assured that the information provided to ACC would be kept confidential.  That the information didn’t go outside of the Sensitive Claims unit, and that only those people directly involved in my case, would access my file.

I struggle with trust issues, so needed this reassurance.

Those of you who have read my blog for any length of time, will be aware of the struggles that I have had with ACC.  They have mislaid emails that I’ve sent them – emails containing incredibly sensitive information.  They have sent me incorrect letters – one told me that my therapy support was being stopped, when it wasn’t.  They regularly change my case manager without letting Allison, or I, know.  There was a long struggle over my level of impairment.  What all of this has meant, is that my faith in ACCs ability to carry out their role, is pretty minimal.  I dread the reports for further funding that Allison has to do, as it usually means that I will be sent to yet another stranger for an assessment…

Despite the significant drawbacks associated with ACC, it is the only way that I can afford therapy.  This means, that it is the only way that I have been able to maintain a job, and keep being a (productive?) member of society.  It would be questionable as to whether I would still be here if it wasn’t for this assistance.  That may sound overly dramatic, but it’s possibly closer to the truth than I would care to admit.

So, I am thankful for the assistance I get; but, am also incredibly wary of the strings that are attached to that assistance.

A couple of weeks ago, those strings became entangled beyond recognition.  It came to light that ACC had sent the details of about 9000 clients, including those of some sensitive claimants, to an ACC client.  Yes, a fellow ACC client… not any sort of health professional, but a member of the public.

Before this incident, I knew of one other incident where a fellow claimants file had been sent to people unrelated to her case. So, this sort of breach doesn’t seem to be a one off error.

Since this incident became public:

While I can understand the chain of events, much of it seems to detract from some of the core issues that this incident has raised…

  1. Why was there a document with ACC Sensitive Claims Unit client information on it, being circulated to anyone outside of the unit?
  2. What is the purpose of such a document to begin with? The cynical part of me wonders if it’s about highlighting “problem” claimants, or pitting the units against each other.
  3. How could the document be sent without basic security, such as password protection?
  4. How often does this sort of breach happen?
  5. What is being done to tighten privacy and security within ACC?
  6. Why didn’t ACC act sooner on this breach?

But, the most important question for me, is…

  1. Why should I ever trust ACC again?

ACC has files which contain some of my darkest, most shameful secrets.  How can I trust that the information won’t accidentally end up on the doorstep, in an email, or faxed; to someone who has nothing to do with my case?  I can’t.  ACC have proven that they cannot be trusted.

So, where does that leave me?  To be honest, I’m not sure.  As my ability to see Allison is dependant on ACC funding, and she must report any new information about my abuse, and it’s effects on me; she has been placed in a precarious position… I’m meant to be open and honest with her, yet if I am, that information will potentially go back to ACC.  How can I be open with Allison if she is reporting to an organisation that has proven to be untrustworthy?

There have been lots of stories about the privacy breach within the media, and many have waved the “isn’t it awful that sensitive claimant information was included” flag… but, what they don’t seem to grasp, is the devastation that this has on an already vulnerable group of people.  As sensitive claimants, our trust has already been violated in one of the most horrific ways possible, and to have that again shaken by the organisation that is meant to help, is destabilising.

I know ACC cannot be perfect, but they need to be responsible and accountable.

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Expressive Arts Carnival: Coping

The theme for this months Expressive Arts Carnival is:

Through drawing, painting, photography or any other visual means, create an image about mechanisms you have used to cope when you thought you could not.

I admit it, I have a love/hate relationship with coping mechanisms.  I’m often told by mental health professionals that I know plenty of coping mechanisms…  I’m often told by the crisis lines to “go do your coping techniques”…  Both of these statements have a tendency to annoy me.  While they’re both true, I also see them as a cop out.  So I know plenty of coping mechanisms, does that mean I can’t learn any more?  Yes, doing various coping techniques help me when I’m feeling overwhelmed; but by the time I’ve called the crisis lines, I’ve usually been doing them for at least 12 hours straight and need some support beyond what the coping mechanisms can provide.  So while I see the need for coping mechanisms, I sometimes approach them with a sense of dread.

Even after all of these years, I still label the activities “coping mechanisms”, which can sometimes cause an odd tension.  I know that I need to do them in order to help keep me present and safe; but because of the connotations surrounding their use, it feels as if they are assigned a label, and trotted out on special occasions.  This is even for the techniques I have managed to build into my life as part of my routine and attempts to enrich my life.  One week I may go out and take photos because I feel like it; but the next week, taking photos becomes a coping technique which must be carried out in order to keep the crazy at bay.  Same activity, but totally different meanings.

It can be challenging to use coping techniques.  They can act as a distraction from the emotions which threaten to overwhelm, but they also encourage you to sit with the emotions without “checking out” through the use of the old, less healthy means of coping (self-injury, etc).  It can also be challenging finding ones which work… something that works one day, might not work another.  Even realising that you are worthy of using a healthy coping mechanism, instead of self-injuring, can be difficult.  There are times when no matter what I try, I’m still swept along with the old ways of coping… but I’ve found that the more I get angry at myself for that, the more anxiety there is the next time I begin to get overwhelmed.  That’s not to say that I accept that the self-injury has happened, I don’t; instead I try to learn from it.  The more I can learn about the triggers and the motivations, the more likely I am to recognise the warning signs, and try different coping mechanisms before it’s too late.

My entry for this months carnival is an indication of my attempts to learn about new ways of coping.  Last year, I underwent a psychiatric assessment to determine my level of impairment.  I don’t react well to any assessment, but this one was particularly difficult.  I wrote a history of my abuse… something that I’d never done before, and it caused a great deal of turmoil and confusion.

I knew beforehand that I might react badly to the assessment, so I made plans to try and help myself cope with it all.  I arranged for some time off work, asked my mother to stay, and organised a trip by the sea as a reward for getting through the assessment.  On one level, these arrangements made sense… I was unlikely to be able to function at work, so arrange some time off work, etc.  But, on another level, they were also attempts at self care and utilising positive coping mechanisms.  Trying to understand my limits, and working within them.

Not everything went as planned, and there was some serious bumps along the way.  Probably the most challenging time was when I went away for the trip.  What should have been a restful time at the beach, turned into a messy contradiction in terms of coping and safety.  At times, I could go for a walk along the beach and feel the sense of peace; but at times, I was swept away by the emotions which were stirred by the assessment.  After one particularly bad night, I forced myself to pick up my camera and go for a walk.  I walked for hours… something that is rare for me, as I usually need a purpose when going out.  During that walk, I took the photo below.  It’s not my best photo, but it represents a time when I was struggling so desperately to stay present and safe.  If I’d been more present, I would have chosen a different angle, and camera settings… but as it is, the photo shows my attempts to connect to the environment around me. It’s not perfect, but it stills works… especially if you squint a bit, and tilt your head to the right.

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Now playing: Natalie Merchant – Wonder
via FoxyTunes

My Truth

When Paul announced that the topic for both the Carnival Against Child Abuse, and Expressive Arts Carnival would be “your truth”, I was excited. I struggle with what my truth is, almost on a daily basis; so saw this as a great way to explore my reactions and issues around the concept.  Then the reality of writing about the topic hit me… literally.  I published a post about my truth last week, which received some negative feedback, and all my insecurities came out and had a party.  It became a fight about whether I would look more foolish keeping it up, or taking it down.  I decided to take it down.

I consider truth to be an amorphous concept.  What I wrote last week, was my truth at that time.  What I write today, will be different because I’ve learned from last week’s experience, and gained more understanding about the situation.  If I write another post on this topic in a week, month or year, it will be different again.  Truth isn’t set in stone.  Truth is derived from the understanding of our experiences… but that understanding comes from our perspective, bias, values, etc.

Truth also has political, economic and cultural importance.  This is where I start to get confused – not because I think I’m of any great importance, but rather because so many people seem to have a vested interest in my truth…

  • The False Memory Syndrome Foundation and DID deniers are vocal in their opinion and research that they say proves you cannot repress traumatic memory in the way that many DID cases are presenting.
  • Extreme supporters of DID tell you to seek out each memory and believe it as the truth.
  • My family don’t know what to believe, but they are tired of having a daughter who is unwell.
  • Work doesn’t care as long as they get more than my contracted hours of work, and I don’t inconvenience them with my phobias.
  • ACC accepts that I have issues related to sexual abuse, but would prefer this to have been “resolved” long ago so that they didn’t need to keep funding my therapy.

I find it impossible to ignore all of these conflicting messages and theories.  In some ways, I think it’s dangerous to do so.  Each group has something to teach us… FMS helped to place a check of poor therapeutic practice; our family show us how confusing our experience can appear to the outside world; and so on.  But, I don’t think that it’s up to us as individuals, to get caught up in the debates and arguments.  I think that we owe it to ourselves to be an informed consumer; to gain power over our own healing, and to play an active part in that healing process.  But we shouldn’t hurt ourselves in the process.

I’ve read much of the FMS material.  I’ve debated with the DID deniers.  I’ve questioned the beliefs of the extreme supporters.  Each of those interactions has come at a personal cost.  I begin to doubt my truth.  I become conflicted and destabilised.  Opponents to DID, would argue that this destabilisation was due to the house of cards that I have built my life on, being threatened.  The thing is, the intellectual part of me likes this reasoning.  At times I embrace denial for all it’s worth.  Events which I know occurred are minimised, or I detach emotionally from them.

But, this doesn’t explain how I continue to react to things.  Even in the midst of my denial, I still avoid the smell of tyres on a hot summer day, I must have my back to the wall… the list goes on.  I can appear bright, happy and be super-functional; yet internally I’ve compartmentalised the turmoil, and can dangerously self injure within the hour.  This is where my intellectual/autobiographical truth, and the truth of my sensory memory collide.  For me, healing comes, not from trying to uncover every single memory, but rather in coping with what I am facing in the present – it’s about symptom management, not chasing memories.

It’s my intellectual part that needs to know what happened to me; but this has never been where my healing has occurred.  My greatest leaps in healing have always come from working through a trigger in the present.  It’s shown the wounded parts of me that it is possible to be safe.  Ironically, this safety has often led to more sharing of emotions, and yes, sometimes memories.  But these were shared from a place of strength, not chaos.  They didn’t have the power to sweep me along on an emotional tidal wave.  That’s not to say that I don’t get swept away, I do.  But I’m learning how to cope in the present in a more proactive way… a more emotional way.  It’s uncomfortable, it’s scary, but the benefits are showing.

So what is my truth?  I was hurt in the past by people who should have protected me.  That betrayal of trust now influences my life in significant ways.  I get confused, distracted and hurt by the controversy that is associated with the diagnostic label that a psychiatrist assigned me.  I am trying my best to heal from the wounds of the past, understand the controversy, and (more importantly) live a life.  Isn’t that what most of us are trying to do?

Truth

What is the truth… or are they both the truth seen from different perspectives?

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Now playing: Collective Soul – December
via FoxyTunes

Reflections: Part II

Yesterday I wrote a happy shiny summary on 2010.  It was accurate, and covered many of the positive things that had happened last year, but it wasn’t an accurate reflection.  The purpose of a reflective exercise is to put the past into a learning framework, and that’s what I failed to do.  By looking only at the positives, I sidelined and ignored the struggles I faced, and how those struggles influenced the positives.

When looking at the overall themes of last year, it’s easy to see that I was concentrating on safety and consistency.  To me, these issues are intertwined.  I’m at a stage in my healing where I need a consistent structure in order to find safety.  If this structure is absent, as it was when my therapeutic relationship with Liz disintegrated, and my friendship with Matthew fell apart; there were serious consequences for my safety.  I lost an anchor that I had relied on – no matter how dysfunctional it was, and I allowed it to push me into a downward spiral.  This was even more evident, when my cynical work friend started having an affair with a married man.  The triggers associated with the relationship were too close to my parents relationship, that I was unable to relax around her like I used to.  Unlike the rupture with Liz and Matthew, I was able to maintain an altered friendship with my work friend.  The key difference, was that with Liz and Matthew there was hurt in the present, whereas I had the awareness to realise that my work friend wasn’t hurting me directly in the past or present.  I may not agree with her moral choices, but the friendship was maintained, if somewhat modified.

Throughout the year, I’ve had ACC decisions hanging over my head.  This was one of the drivers which lead to my suicide attempt, and to my withdrawal from life.  The thought of a faceless case manager deciding my therapeutic fate, without having ever met me, basically did my head in.  This is a fairly consistent story across many sensitive claims clients.  The power imbalance in favour of ACC, is such a trigger to the old abusive situations, that it’s difficult to work your way through to a rational interaction with them.  Despite my fears, the assessing psychiatrist was incredibly supportive and gentle.  He gave me a significant impairment which should hopefully allow me to access therapeutic care for awhile yet.

This leads onto the therapeutic relationship with Allison.  I’ve avoided talking about her and what happens in therapy, mainly because I want to protect the relationship.  As with any human relationship, there are ups and downs, but the strength of Allison, is her ability to encourage me to slow down.  My default coping mechanism is to dissociate and rush through anything that feels scary; but Allison is helping me to realise that this doesn’t have to happen.  I can tolerate the emotions that are a part of living.  They may scare me, and I may not understand what I hear within sessions; but what is said and felt, is me.  It’s that simple, and that complicated.

I still struggle with denial, minimisation, comparisons and other circular thinking.  But, Allison helps me to work through this through validation and acceptance.  She doesn’t encourage blind faith, and is open to questioning about the validity of what is being said, and her experience with dealing with what I present.  Not that I challenge her on a regular basis or anything… well, actually I don’t as much as I did.  There is a sense of respect towards Allison, even if there isn’t consistent trust.

Last year, I also briefly saw WPT and an occupational therapist.  They were at opposite ends of the helpful spectrum… WPT helped me realise that by saying how strong the young ones within the system were, I was re-enforcing the idea that they were meant to stay strong and protect me.  This was so obvious, but yet, I thought I was showing respect by mentioning their strength.  But the young ones need care, not more pressure.  In contrast, the occupational therapist was not a good therapeutic match.  She reminded me of a cross between a cheerleader and an unskilled kindergarten teacher – lots of loud enthusiastic talk, with very little substance or experience.  Thankfully she discharged me after meeting one of the three goals we’d established.

One of the things that worried me about seeing these other therapists, was that I wondered if my life would revolve around therapy and healing.  Considering my work commitments; this would be unlikely, and it would probably have been helpful if they had worked out.  But, there was that nagging fear that I would start to define myself and my life through my mental health.  Which when I consider that I spent so much time this year caught up in self injury, the change of focus to healing, might have been a good thing!

Yes, my old nemesis… self injury.  It also bumped into my suicidal ideation and intent this year, which wasn’t a pretty sight or feeling.  But a shock can sometimes be good for the system, and near the end of last year, I got one.  It wasn’t the suicide attempt, but instead the health of a friend bringing up all sorts of memories.  Consequences, accountability, fears and reality all collided.  Repercussions were felt throughout the system, and as a result, one dangerous form of self injury has been largely controlled.  There is yet to be any sense of accomplishment about this, and there is a fear that the triggering presence of the mother is going to release a tidal wave of self injury this weekend.  All I can do is plan for it not to happen…

So much of my life now, is about trying to live from moment to moment.  I had hoped to be further along in my healing than this by now, but I’m not.  This isn’t to take away from the accomplishments that I have achieved, but rather a sense of “not again”.  This Christmas, I did cope better than the previous year; but then I had hayfever, so could barely speak or raise my head.  The hayfever has eased, and with that, the triggering memories and intolerance of the mother has returned.  The mother has been here two weeks, and that’s about three weeks too long.  Wish me luck for the rest of the week…

As so much of my year has been on exploring the creative arts, I thought I’d do the following summaries of the positive, and difficult work that I’ve been doing.  As a warning, the second (Polyvore) video may trigger.

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Now playing: The Beatles – Here Comes The Sun
via FoxyTunes

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Now playing: Yo-Yo Ma – Unaccompanied Cello Suite No. 5 in C minor, BWV 1011: IV. Sarabande
via FoxyTunes

Reflections

Note:  I have removed commenting from this post, as it was written from one perspective only.  While I need to honour that perspective by leaving it up here; it doesn’t fully indicate where I am, or how the year has gone.  I’ll have another go at writing something after the medication has kicked in 🙂

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A few of my fellow bloggers are doing reflections on the past year. I initially balked at doing something similar; because, well, I didn’t think that I had all that much to reflect on, or to be positive about. But then I got to thinking, and actually came up with a few… here they are, my random reflections, in all their crazy gloriousness…

I ended some extremely negative relationships:

  • Kriss – who was psychologically abusive through his manipulation and inconsistency.
  • Matthew – who the day before I attempted suicide, told me that we were all worthless in the big scheme of things, and that I would not be missed.  This was not the reason for the suicide, but I think it acted as a final straw.
  • My divorce became final.  I am no longer tied in any way to that man.
  • The last relationship was possibly the most important, as it was with someone who knew how to use my dissociation for his own gain.  He shall remain nameless and faceless, but I’m glad I stood up to him and took steps to ensure my safety.

I meet some incredible people through the blogosphere, and even made some friends – despite reverting to “pompous mode” (otherwise known as insecure mode), on occasion.  I’ve learned, laughed, got angry on your behalf and even occasionally shed a tear because of you all – thank you!

I attempted suicide, and survived.  I meant to die.  I wanted to die.  But I didn’t.  Some wizardry of the medical kind, protected my liver; while in the aftermath, the nurses treated me with professionalism.  The suicidal ideation and intent hasn’t vanished, but it’s back to a level that is manageable in my daily life.

I said No to physical touch for the first time in my life EVER.  Allison was saying that when she feels upset for her clients, she often wants to put her arm around them and give comfort through physical touch.  As soon as she said this, I stamped both feet on the ground, like I was getting ready to sprint out the door, and firmly said No.  Ok, so I said the word in a therapists office, where I have established that she will never touch me without consent, but still… I said the word.  Loudly.

I started working with Allison.  It’s been rough, and I still don’t understand her.  But there’s a consistency in staring at her coffee table, feet, bookshelves or her rather sad pot plant.  We talk.  She forces me to slow down, to notice when I have reactions, to accept that I do react, and that it’s ok to do so.

I had brief contact with some of the ones within my system that I didn’t previously know about, but feared.  All I knew was that there was something “bad” in The Basement of my internal house; but that “bad” turned out to be ones which are very hurt.  I know my work with what they hold is by no means complete, but it was started.

I was reminded that I can’t work on one part of the system, to the exclusion of other parts; instead, I must think of my being in it’s totality.  I still struggle with this, but if I wandered too far into a particular coping mechanism, or way of being; there would be a reaction or incident that would remind me that I’m not dealing with one aspect of my life at a time anymore.

At work, I received mixed messages about my performance.  I was given an excellent performance review, asked to act as team leader and manager during absences; but was not given a pay rise.  The high performer within me wants to know how to be perfect, and therefore be worthy of a pay rise; while the realist in me knows that the pay issue is tied to the economic and political times, more than my performance.  It’s a good reminder, that I still need to work on gaining satisfaction from my job that is independent of others.  I still rely on others to prove my worth and validate my existence.  I need to shift that, so that I can gain job satisfaction without needing others approval.

I did my little bit to fight the changes brought about by the new ACC clinical pathway.  I wrote a couple of posts, got into some verbal exchanges on some forums, and even ventured into other peoples blogs to discuss the issues.  Sometimes, I didn’t cope well… but sometimes, I was proud of what I was doing.  I may not have made any impact on the policies, but there were big changes in my healing as a result.  I stood up for myself, and that caused a positive flow-on effect.  On a personal level, my struggles with obtaining ongoing ACC coverage aren’t over, but that’s another story.

I worked on creative expression.  I found that although I can rarely “look inside” and get a direct answer, I can do a Polyvore set or write a poem, and find an answer.  I often get scared of what is communicated, or don’t understand it.  But, I’m a work in progress, and I can learn.  There is more trust from the system because of my willingness to work in this way.

I’ve learned an awful lot this past year.  I think that’s possibly why I fear 2011 so much… the stakes are so much higher.

I wish you all the best for the coming year.  Take care out there…

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Now playing: Pink – Trouble
via FoxyTunes

Protected: Looking into the void

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The Attic

Floating high above the pain
Turn away…
Don’t see
Don’t hear… don’t feel

Come, let’s play
Let’s forget about what’s happening below
Look, how many flowers can you see in the wallpaper?
How loud can we sing?

Many days past, playing near the ceiling
Then a tipping point…
Uncle came along
With needs and acts depraved

Floating high above was no longer enough
Singing did little to hush the screams

Come into The Attic
I built it just for you
White and pure
No shadows, no pain

I will protect you
Hide you
Keep you safe
Forever

This partial poem was written by Carrie (the protector of The Attic), before today’s emergency therapy session with Allison.  It was meant to tell how, and why The Attic was created.  It told us that, and so much more…  It told us where the current suicidal ideation is coming from.

Carrie guided the innocents into a place of safety within The Attic; all the while seeing the acts causing the dissociation.  Carrie’s whole world revolves around keeping those within The Attic safe from abuse.  So, when The Basement started to become involved in the healing process, Carrie saw healing as a threat.  She stills sees the world as an evil place – self-injury, child abuse, inequity, intolerance and hate all still occur.  Therefore, it’s a world still unsafe for those in her care.  The only solution she sees… suicide.

This is what I took into Allison today.  Because of the new clarity surrounding the issues, it was a really productive session…

We talked about the poem and image created about The Basement/Vault, and what it meant.  She was curious as to why the image was so imbalanced – with the box being so much smaller than the image representing hopes and dreams.  At first, we thought we had the meaning behind this image sorted, but her questioning made us rethink it.  In an image that I considered to indicate hopelessness and a sense of fear, she managed to show us hope.

Then our familiar nemesis… ACC.  ACC contacted us yesterday to tell us the final results of our latest assessment.  Immediately, M was wanting to fight the decision.  But by the end of the night, she was rethinking the need to fight.  She stood back and looked at the toll our interactions with ACC have had on us over the years… two suicide attempts and countless instances of self-injury.  Was that fight worth it?  In some ways, it is.  The fight gives M something to focus on, and something to be here for.  We’re used to fighting…  there’s a comfort in fighting something external.  But, it’s not healthy.  Allison asked what would happen if we directed the energy expended on fighting ACC into something healing… how’s that for a dose of reality!

Finally, how to help Carrie.  This was difficult.  Carrie has only ever come forward once or twice in therapy, and that was about 3 years ago.  We didn’t really get any sense of having resolved the problem, or the reason for the suicidal ideation.  But, we acknowledged that Carrie’s fears are real and tangible.  Allison tried to show how there is beauty in the world too… I’m not sure if she succeeded or not, but when we were walking back to work, we saw the blue sky for the first time in what seems like forever…

I’m not naive enough to believe that I’m safe.  But, there is a spark of hope that’s been absent for a long time.

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Now playing: Creedence Clearwater Revival – Have You Ever Seen The Rain?
via FoxyTunes