Scattered pieces

Today, two articles were published by the Sunday Star Times which highlight a troubling aspect regarding the recent changes in ACC guidelines (or clinical pathway)… ACC advisor silent on links to sex abusers and Conflicting interests?

Reading these articles has left me with questions…

• How much influence have the ideologies of Bert Potter (a convicted pedophile), indirectly had on ACC Sensitive Claims Unit policies?
• If ACC commissioned research directly from Felicity Goodyear-Smith, why?  What was the motivation, considering her stance and ideologies were well known at the time of the later studies.
• Why did ACC commission research from a GP, rather than psychologists, psychiatrists or clinical psychologists?
• Why did ACC commission research from a person who was a founding member of a group dedicated to defending those accused of sexual crimes (Casualities of Sexual Allegations – COSA), and who has been used as an expert witness defending the accused?
• Why did ACC commission research from someone who could later argue “that gonorrhoea in pre-pubescent children was not necessarily an indicator of sexual abuse”? (see Conflicting interests? and What is the evidence for non-sexual transmission of gonorrhoea in children after the neonatal period? A systematic review)
• My knowledge of the tertiary sector, would indicate that the research was directly commissioned.  However, if ACC commissioned the research from The University of Auckland, and they assigned the research to her… why was it assigned to her and why did ACC commission more research without any provisos that she not be involved in further research associated with sexual abuse?
• In the research where Ethic Committee approval was needed, what was disclosed about any conflicts of interest regarding the study?  Not only of the main researcher, but also other people involved in the study.

But, the most important question…

What is ACC going to do with this information?

One step was the appointment of the review panel, who are looking at the changes in policy and their impact on claimants… but this was instigated by a Dr Nick Smith under pressure from the opposing political party and public pressure in the form of survivor rallies and news stories about the suicide of women refused ACC funded counselling (see Denied help for sexual abuse, dead days later).

It also seems hard to believe that ACC didn’t know the type of research, or outcomes that would be produced, when the book First do no harm: The sex abuse industry, was published in 1993.  So the ideologies were well known before the 2003 and 2005 ACC research was commissioned.  So, may be the more appropriate question is…

What is ACC going to do, now that this information is public?

On a personal note… One of the arguments put forth by Felicity Goodyear-Smith, is that children seek out sexual contact with adults as part of a consensual act.  I find this the greatest insult.  I initiated sexual contact with adults, I know this and carry the shame and confusion as a result.  But, well before I did this, I had been forced into sexual situations which were beyond my ability to cope or understand them.  I was abused.  I was used.  I was stripped of my humanity and treated as a plaything.  I was so sexualised by the time that I initiated the contact, that I didn’t know what the appropriate sexual boundaries were.  I thought that it was “normal” to play those games.  I also found that it was over more quickly if you acted a certain way.  It hurt less.  It was also one way to get a sense of power, in an otherwise powerless situation.  So one statement, treated as generalised fact, can hide a huge range of issues and problems.  There are no simple answers when it comes to child sexual abuse… well, there’s one simple answer – it’s wrong… morally, ethically and legally wrong.

I’d like to thank Tim Hume, Barrie Leslie and Kyle MacDonald for speaking out.  I know there are others, not named in the articles who contributed, so would like to thank them as well…

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Now playing: The Feelers – Stand Up
via FoxyTunes

Ok… so, the big stuff… the stuff I’ve been studiously avoiding for the last probably two to three weeks… maybe even that last couple of months.  I can’t analyse or reflect on them yet, but I need to write them down so that they lessen their hold over me.

Probably the most obvious, is the therapeutic rupture with Liz.  It destabilised me.  It re-enforced all the old messages about me being too difficult to cope with, and made me feel as if I would never heal.  I still don’t think that the new therapist will cope…  She says she’s one of the top therapists in the small city where we live; but then, Bob was one of the top clinical psychologists, and that didn’t turn out well.  We’re still not sure if ACC will fund us to see her; so until funding is established, we’re seeing her fortnightly.  I know that isn’t often enough, but we can’t afford weekly therapy.

Once you get past the obvious of therapy, there’s the other given… work.  We recently had a change to our union negotiated employment agreement.  The new agreement meant that we ended up with a negative sick leave balance.  We’d used up so much sick leave in the short time we’ve been there, that we’d used the equivalent of an extra years allowance.  This basically meant that we were going to have to go for over a year, with any sick leave being unpaid.  There’s no way we could afford that.  Our union is incredibly weak and unable to fight for the rights of the worker – if you wonder why I’m in such a weak union, librarians are traditionally left wing, socialists who believe in unions, and so there’s a great deal of pressure to join.

So, ignoring the union, we researched the law and questioned work on the validity of the negative balance, when according the the Holidays Act, each employee must have five days paid sick leave per year.  We sent through an email outlining the law, and asking what that meant in regards to our negative balance.  This resulted in a meeting with HR (hence the entry about the panic attack).  The meeting was mercifully quick and resulted in HR apologising to me for any distress caused.  They also gave me five sick days immediately, and another five in six months time.

We had been expecting a written warning about our excessive sick leave.  During the negotiations, our employer had been talking about “sick leave abusers”.  When we saw that negative balance, we immediately knew that we were one of the people being targeted.  We doubted all of the work we’ve been doing.  We don’t feel as if we’ve been performing to an even half descent standard lately.  So again, all our fears and inadequacies were thrown into the spot light.

The other obvious stress has been the divorce.  We got the papers served on the ex-husband, and immediately started to get hang up phone calls.  They were at odds times of the day and lasted for a week, ending only when we picked up the phone once and asked who was there.  This led to all sorts of flashbacks and activation of parts who used to deal with the ex-husband.

Which probably leads into the other issue I’ve been facing… increasing amounts and severity of self injury.  It’s been a really tough few weeks, lots of lost time and negative coping mechanisms being used.  I know I’m going to have to tell the new therapist about this, but it’s so shame inducing that I don’t know how.  I keep thinking that I should be “strong enough” or “healed enough” not to do those old coping mechanisms… but yet fall back into them when the going gets really bad.

Then there’s the last big thing which feels so awful and… just yuck.  I’m friends with the younger of my two brothers on FaceBook.  A few months ago, a photo was added to his profile.  It’s not an awful photo, it’s actually a really good one, which shows his body language as I remember it.  The thing that sends the system into chaos however, is that the lower half of his face is almost exactly the same as the fathers.  The mouth is the same… as is the chin.  It drives some in the system crazy.  My brother is now the age that the father would have been when we were in our early teens.  As I write this, I feel the dissociation coming.  I know this is a huge trigger.  I know that sometimes one of us looks at this photo of our brother as a punishment.

Far out… that’s all I can write… sorry, I know this doesn’t make much sense.  But I needed to get it out in some way.

In all the craziness, I’m reminded of the lines from Hymn to Her…

She will always carry on
Something is lost
But something is found

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Now playing: The Pretenders – Hymn To Her
via FoxyTunes

When I was seeing Bob, she asked me to complete a list of 10 things that I enjoyed involving the senses or activities. This exercise was aimed at improving my body awareness and giving options for distraction or grounding when I am stressed. I’m really struggling at the moment, so I thought this would be a good time to share my homework and remind myself of the options available to me… It also will force me to try and expand my lists in the hopes of eventually reach 10 items for at least one of the senses.

Additions based on commenters suggestions in italics – Thank you :)

I added to each of the columns by writing it out here :) I can do this, can’t I?

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Now playing: Cat Stevens – Moonshadow
via FoxyTunes

So yesterday we went to therapy – yippee!!!
Yes, we can do sarcasm.

Not sure which of us is sounding more like a broken record at the moment – Bob with her “you decided to integrate” line, or us with the “but how can we integrate when we don’t know who is there and what they do” line.

We did get some clarification as to why we’re being encouraged down this track – we’ve been doing DBT skills for the last two years and it hasn’t allowed us to move forward, so working on the structure of the dissociation will. Hmmm many of us question this statement as our previous therapist had no working knowledge of DBT, but anyway… Because we haven’t dug enough of a hole for ourselves over the last couple of weeks, someone thought they’d challenge her…

Shovel #1 -
We didn’t voluntarily decide to integrate, of the three options Bob presented it was the least disgusting.

Shovel #2 -
We haven’t read any articles that promote what Bob is proposing.

Shovel #3 -
We don’t know how to integrate – if we did we would have done it years ago.

At this point, we decided that a shovel just wasn’t making the hole deep enough. So we got out the heavy digger…

Bucket #1 -
We could just tell Bob we’d integrated and she’d never know.
This is our big fear – we’ll try to please her and cause more hiding in the process.

Bucket #2 -
Considering that we’re not aware of the other parts, how is integrating them going to help stop the suicidal ideation? It may increase the memory gaps if we unknowingly make the destructive parts stronger with an integration.

Then the final straw – we eliminated the need for earth moving equipment and just threw a stick of explosives into the hole…

Our internal house has four floors. There is little communication between floors. So we tried to explain this with the comparison in the real world setting… It’s sort of like you live in one house and the other floors are represented by other houses in the street. You may now that 5 people live in the house two down from you, but you’ve never met or talked to them. So if you decide to integrate that house into one person, it doesn’t really impact on you as you’re two houses away. So yes, we’d put the Attic up for integration. With the exception of Carrie (floor protector), Buffie (roamer) and One; no one has any knowledge of what goes on in there. We know that is where the innocents are kept, but that’s it! So sure, integrate that floor. Heck we need to make the good parts stronger, so it makes sense to get that floor as strong as possible.

There are a couple of small problems with this plan…
#1 – We have no idea who is there, so how can we integrate them.
#2 – Carrie is one scary arse protector and she doesn’t like this new therapist.

So we’re heading into the holidays with no real idea of what we’re doing. We’re trying to see if there is a way to make it work with the current therapist, but I think we’re talking at each other in different languages. When we said that we wanted to research the model of therapy she is proposing, she said that wouldn’t be helpful. It would be more helpful to research the parts in the Attic… We know there is a logic in this statement, so it makes us feel as if we are blocking healing as we just don’t know how to do it. We don’t have enough memory of the childhood to even know where or why the innocents may have been separated off.

We know we over analyse things. We know we go off on tangents. She thinks we’re doing this to halt our own healing. She said that if we didn’t want to change, there’s no point in going back to see her or anyone else. Our big fear is that if we decide to not see her anymore, she will write to ACC that we are not willing to change and they’ll stop funding our therapy. Maybe we need to stop therapy, maybe we don’t want to change. We not sure anymore… *Sigh*

This is a clip we did when she first mentioned the “eviction” technique…

As a follow up to the emails we sent our therapist, we sent this to try and get her to understand that why we thought it would be helpful to get an email answer to some important questions…

Hi Bob,

Regards
Kate

Having still received no response from her, we’re assuming that she’d prefer that we talk about it in therapy and for us to only get half the information. Just brilliant. The woman is intelligent, but we’re wondering if she’s so rule and boundary driven that she can’t see beyond those rules and boundaries.

We know that people need boundaries – boundaries are good. We’re the first to admit that our ideas around boundaries are messed up. But all we wanted is some really important questions answered in a safe way for us. Is that too much to ask? Well apparently the answer is “Yes”.

So now we have to try and find a new therapist… during the Christmas holidays. We know that last Christmas was a bad one for us. We know this, but have a total memory blank as to why it was bad. We know that we attempted suicide over the New Year holidays – Aimee did the post attempt assessment and told the rather nice young resident that she was too young to drink :) This all means that we’re potentially going to need outside help to keep safe during this time. The mother is coming up to stay with us over the holidays, but that brings all sorts of other tensions…

The need to find a decent therapist is high… The reality of finding one is going to be very hard. We contacted the only therapist in NZ who is listed on ISST-D. She got back to us yesterday to say that she didn’t know of anyone in our city with experience in treating the dissociative disorders. But she did recommend someone who lived closer to our city to see if they knew of someone who lives here… So just waiting to hear back from them. We’re hoping to find someone this way so that we don’t have to go through the painful process of interviewing the different people. It’s just too stressful to have to met these people and ask all sorts of questions.

It’s becoming very much like Vague commented on in our previous post – the therapy itself is becoming more stressful than the trauma work. What’s odd is that the current clinical psychologist hasn’t even touched on the trauma. She asks general questions about whether we’ve had a good or rough week, but nothing that can’t be deflected easily.

In our recent attempts to get some answers from our therapist, we sent the following emails…

We’re bad at code names… So she is “Bob” and we are “Kate”… Those who’ve watched Blackadder will understand this :)

Hi Bob,

Some concerns have arisen from the last few sessions. I realise that you would prefer us to raise these questions during a session, but these are ones that I need to think about your responses to quite extensively, so don’t want to risk a poor reaction that is out of context or un-necessary.

1. What diagnosis do you understand me to have?
2. What experience do you have in treating this diagnosis?
3. How long can I expect sessions with you to continue?
4. If ACC refuse to fund further sessions, do you have someone you recommend that I see who specialises in the area of this diagnosis?

To be honest, if I was working on the “one strike you’re out” mentality that you mentioned during yesterday’s session, sessions would have stopped a long time ago. All that occurred is that time was needed to process what you had said – nothing more, nothing less.

Yes, there is a certain level of black and white thinking – as is common with most survivors of trauma. However, this thinking is more turned on myself rather than others – if there is a misunderstanding, it is my fault; if there is evil, it is mine…

If you see resistance to change, this is because there is a feeling that you are attempting to change things without fully understanding what is occurring. Rules you established were done so with little understanding of the whole picture. There is a struggle to help people understand what goes on in this head as there are not the words to describe it – education background in Sciences rather than Arts/Social Sciences. So I know that the lack of communication as to what the full picture looks like is my fault. When attempts have been made to try and explain why the rules may not work, you don’t seem to be grasping the implications – again this is my inability to explain the full picture. There is again a lack of hope that I will be able to find help.

Regards
Kate

Bob’s response after being prompted to give a reply…

Hi Kate,
You are welcome to email me, but I do not think it would be helpful for you if we did therapy through email. I would rather we discussed therapy issues in sessions.
Kind regards
Bob

Well this response was fair enough… I’m sure most of her clients are better in this form of boundary… BUT WE’RE NOT!!!!!!!! Hence our response…

Hi Bob,

Thank you for responding. I understand your response, and it is reasonable. However, as I dissociate freely during therapy time, the answers you give won’t be remembered. I also don’t have the strength or level of trust to ask difficult questions during the session, so these will not be asked. Due to these factors I was attempting to have issues addressed in a way that is safe for me and allows time to reflect on the answers given.

No answer you give will surprise – you have the notes and the list of diagnoses given over the last three years. It’s not a list to be proud of, but it also means that there is nothing that will shock me.

As the next session will be a few days before Christmas, it is not a good time to discuss this then.

Regards
Kate

We were rather soft at the end, and possibly gave the impression that we are prepared to talk about it in a session some time next year… Trying to find a way of saying “Just give us the answers woman” without it sounding threatening or nasty.

To make things worse, we’ve had to cancel tomorrow’s therapy session because of this cold we have… So odds are she thinks we’re playing games or something… *sigh*

Well ok, so we can’t breathe freely because of the stupid cold we have… But financially we can breathe a little more easily. The money to assist in paying for our therapy has come through from ACC, so the huge debt we’d been stuck with from the separation and the cost of therapy has been eased a little…

We’re still in a rather large financial hole, but at least we’ll be able to buy food and petrol when we need it. Yes, we know there are other people out there struggling more than us… We also know that the only reason we’re haven’t had to declare bankruptcy is that most of the debt is a private loan – to the mother who won’t demand it back soon, but its tied to all sorts of other issues. So we’re grateful that we are able to live in a flat and feed our cat.

On the therapy front… We’d tried to get our therapist to answer some questions via email to see where she stands on what diagnosis she is treating us for, and what experience she has with this diagnosis. Her response was a fairly reasonable “we will talk about therapy while in therapy”. That’s fine, we’d love to be able to talk about this in therapy. However, we dissociate so much during therapy that we won’t remember the answers; and we just don’t have the courage or level of trust to ask these difficult questions while sitting in front of her. Will wait to see what her response to that is…

In the “we are stupid” arena, we’ve excelled this week…

1. We gave our American friend this blog link – totally forgetting how our confusion about him would read from his perspective. Sorry :(
2. We’ve just sent an email to the clinical psychologist asking her what diagnosis she thinks we have and that we think she is moving ahead with changes without fully understanding the entire picture.
3. We’ve just spat the dummy in a team meeting and said things we shouldn’t have.

So sitting here at work feeling sick with the anxiety. Hate the physical symptoms of the anxiety – the headaches, the body pains, the heart racing…

Wishing that we could take so many things back, but we can’t. Wishing that we would hear from our clinical psychologist or friend to find out what damage we’ve done…

Just wanting to scream or release the tension somehow…

Positives from today’s therapy session:

1. We turned up on time.
2. We didn’t go over time.
3. We didn’t talk about the flashback.
4. We didn’t talk about any abuse.
5. One of us stood up to the therapist and said that she was insulting us.

This is going to be a rant. I offer no apologies for this fact, nor offer any reasons other than the ignorance of others and our current level of switching. I’d like to acknowledge the work of Emily, Camigwen and David when I write this, as their blogs and responses have helped to stir questions within this system that we needed to address.

Our questions include:

1. Why do people not believe in a diagnosis that has been proven over time?
2. Why would people want to fake such a disorder?
3. What within this bodies past would cause such injury to the identity that it caused dissociation to become a disorder?

I consider that all of these questions come from one:
Who or what makes DID a valid diagnosis?

As this is our blog, I’ll concentrate on whom and what makes DID valid for us.

Is it the fact that we refer to this body as the collective terms “we”, “us” and “the body”?
No, this could be a learned behaviour that comes from some bizarre need to get attention through faking such a disorder. We are intelligent, this has been shown in IQ tests and our ability to get A+ grades at the Masters level, so remembering to use these ways to address the body would be easily done.

I’m told that when we first went and saw the new therapist that our fear of referring to the body as “we”, “us” etc was so high that we avoided saying any personal terms. Which worked to the point where the therapist asked us why we weren’t using any of the “I” terminology? Her observation annoyed those who had been present for the initial interview. But it also gave them hope – she may be able to help us unravel this mind and sort out what is occurring.

This concept is further complicated by some of us using the terminology “I”, but it only referring to the part that is present. So while Sophie may say “I’m worried about … today” Aimee may say “I’m happy today”. So the context of the “I” is only for that part and only for their experiences. This has caused difficulties when contacting crisis lines, as it is usually Sophie who calls, but she is never suicidal and never self-injures. So the crisis line worker hears a rather shy voice that is able to communicate that there are several different suicide plans and that there is a need for help – but the person asking for the help has a consistent speech pattern, is worried and fearful but is not obviously suicidal. What they don’t hear is the states that are totally devoid of emotion and have the suicide plans. We are unable to get them to communicate with the crisis lines as there is an inherent danger that they may be able to carry out the plans, or they just don’t want to reach out for help.

Having discounted basic terminology, what about the symptoms that we experience? Once, while being assessed for release from sectioning under our Mental Health Act, we were asked to list our symptoms. The list includes derealisation, depersonalisation, dissociation, sleeping problems, anxiety, hypervigilance, hypovigilance, flashbacks, nightmares etc. The assessing resident response was that everyone experienced that, so what made us so special?

So do those symptoms make us special or different? No they don’t. They do however mean that at times we are unable to carry out the normal activities that other New Zealanders enjoy. It means that at times we react oddly or badly to triggers. It affects nearly every aspect of this life – from doing the shopping, to intimacy, to household chores.

We don’t call attention to these symptoms, and are rather stunned if someone around us notices that we do something slightly differently from everyone else. As we are the only ones who can truly see what is going on in this head, it is also difficult to establish whether the severity of the symptoms we have is consistent with having a dissociative (or any other) disorder. Possibly our symptoms are in the “normal” or usual range of experiences and we just can’t cope with them. Considering the amount of assessments we’ve been subjected to over the last three years, it’s become obvious that we’re either a very good actress, or there is some form of disorder occurring.

So should we believe the psychiatrist, clinical psychologists and therapists that we’ve seen? It would be easy if they agreed. We’ve had experiences where we’ve switched in front of our first therapist, she even asked what had happened – according to her we were still physically sitting in the same place, but it appeared as if we’d moved away from her. This was just a switch from the softer Sophie, to the older and more confident Management. We’ve been told that the anger the Frank shows is reason enough to be sectioned under the Mental Health Act. We’ve been told that we have Borderline Personality Disorder, DDNOS, Depression, Anxiety disorders, Epilepsy; Bi-polar disorder… the list goes on. Some of these labels were put on our medical records in an attempt to get us assistance. What’s been interesting has been other mental health professionals responses to those diagnoses. Some look at the list and say that we’re typical Borderlines who are just attention seeking. Our clinical psychologists counters this by asking what attention we’ve enjoyed receiving over the last three years, the response is NONE. Our life revolves around trying to keep the appearance of “normal”. The ex-husband used this trait, and the dissociation to abuse us severely.

So if we can’t trust the mental health professionals, who are we meant to believe? Who do we look to for making the DID diagnosis valid for us?

The answer always seems to come back to one thing – Katie. Katie is our youngest active part. She is three, nearly four. She constantly follows Sophie and will only talk to her. She is precious, she is the reason many of us fight to keep this body alive and in one piece. She is not the identity of birth, but she is our centre. It makes us all stop instantly if Sophie says that Katie is “scaredy cat”. The worst sight ever is seeing her curled up rocking from the pain – either from memories or what is occurring within the system/life.

It could be argued that Katie represents an “inner child” that everyone experiences. This is again possible as we only have our own experiences; we don’t know what anyone else’s inner child acts like. However, we also have Weed, Sore, Scuz, Michelle, Angel etc. These parts all have different memories, ways of interacting with the world (inner and outside), and mannerisms. Weed is calm, quiet, reserved, has issues with religion and is a Science whizz; while Sore is anxious, must keep moving, constantly scratches the arm and talks rapidly.

So where does that leave us? In limbo. DID is not recognised widely in New Zealand. We’ve never been formally tested for any of the dissociative disorders, and in some respects it would be pointless to do so. We’re intelligent; we would be able to skew the results of the tests if we wanted to. So all we have is our collective experiences which seem to add up to DID in the eyes of many of the mental health professionals we’ve seen. What it hasn’t done is given us hope. We’re still struggling to find a therapist who can help us. We try to express our thoughts, feelings and experiences through media such as YouTube and get told that what we’re experiencing is delusional and we need to accept that delusion in order to move forward.

All we know is that we need help. We are becoming lost in the dissociation. Our fronting personality for many years has gone to sleep. We’re struggling to find a way to make this life work with the parts that are here and functioning. We’re asking parts to be up front who have never had that level of exposure and sometimes it doesn’t work. Just recently one of the women at work asked us if we had multiple personality disorder. That gave us all a shock. We managed to laugh it off, but it shows that our ability to hide as developed cracks. We need to repair those cracks rapidly.

Sorry for the length of this post. I rarely am here, so wanted to raise questions for the others to see.

Take care.
Be well.