Scattered pieces

On Tuesday, the New Zealand Herald ran the story of a woman who died (read committed suicide) four days after being declined counselling assistance by ACC (see the whole article here).  It could be argued that there is no link between these two events, but it’s hard not to draw conclusions.  Having been on the receiving end of insensitive letters and shoddy reports from ACC, I know how easy it is to get that last knock which sets off the final downward spiral.  We’ll never know whether this tragedy could have been averted or not.  People within therapy do commit suicide, so there is a possibility, that even with counselling, this would have happened.  But there will always be that… “What if… ?”  I know her children will always wonder and question…

The reason why her claim had been denied, was that ACC determined that she hadn’t suffered a “significant mental injury” due to sexual abuse.  Yet, the counsellor initiating the claim, clearly stated that she was suicidal because of the abuse.  If you’re wondering how this can happen, ACC look at other factors in your life, to see if the symptoms you are suffering from can be attributed elsewhere.  As an example, I am deemed to have grown up in a “challenging” home environment due to having an alcoholic father (among other factors).  When someone grows up in such an environment, it is statistically expected for them to be impaired in some way, for example, children of alcoholic parents are more likely to suffer from depression.  So it would seem that ACC decided in this woman’s case, that her current issues were not due to the sexual abuse.

As an outsider, it’s easy to cite other resources for help that she could have approached instead of the ACC funded therapy – LifeLine, Mental Health Crisis Teams etc.  But in reality, it’s not always that simple.  Speaking from my experiences, when I’ve reached out to the Crisis Lines, their goal is to talk you through that moment and to suggest options for assistance long term.  Often, those options are under-funded and over-stretched.  As an example, if I wanted to see someone through the Mental Health Team, I’d be looking at a six month waiting period – just to be assessed.  When you’re in that pit of hopelessness, six months may as well be 20 years, it seems like an eternity and beyond hope.  This is the reason why the recent changes to the ACC pathways have been so damaging.  The options for someone who doesn’t receive assistance from ACC are limited and often cost prohibitive.  Not many people can afford the cost of therapy; and as it would be considered a pre-existing condition, no private health insurer would accept coverage.

In the same newspaper article that told of this woman’s death, it was announced that there would be a review of the new ACC pathways.  I hope the reviewers seriously look at the Massey Guidelines – the original work, not the slanted way in which ACC has adopted them.  As Kyle MacDonald pointed out, the way ACC have used the Guidelines, is to pretty much ignore them in favour of Goodyear-Smith, Lobb and Mansell (2005).

I also hope that this woman’s death isn’t used for political gain…  She, like so many others who didn’t make it, deserve some dignity.

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Now playing: The Pretenders – Hymn To Her
via FoxyTunes

The other day I stumbled across 1000 Awesome Things.  It’s a countdown of (yes, you guessed it) 1000 awesome things…  It’s updated daily, and reading through some of the entries, it’s amazing how much of myself I can see in them… I was that shy child that hid and read late into the night…  It’s this feeling of having a shared experience, that is the basis of the blog.  It celebrates the little things, humanity, gratefulness and hope.

It’s been a tough few weeks and at times I lost all hope, but reading this blog has kicked me into thinking of things that I find awesome…

1. When you see a baby/toddler, and they do that intense stare, like they’re trying to figure you out… Then, all of a sudden, they burst into giggles and a HUGE grin lights up their face.  That’s priceless.

2. When you’ve had a bad day, you’re at an all time low, and your pet comes up and cuddles into you.

3. It’s been a really bad day, and you shut down communication with the outside world, but friends still reach out with messages of support – THANK YOU!

4. On a frosty morning, sitting on the patch of carpet that has the Sun shining down on it, while drinking Chai, and watching the birds eat the bread you threw out on the lawn.

5. Dancing in the rain.

6. Curling up on the couch, while it’s raining outside, with a blanket and a good book.

7. Being in the middle of a forest, and the only sounds you hear are the birds and the nearby river.  Watching fantails dart around is an added bonus.

8. Going into a toy store, and the younger ones come forward, so you can feel their excitement and wonder.

9. Driving home from work, and an old song you haven’t heard for ages comes on the radio, so you sing along.

10. Standing at the ocean’s edge, being soothed by the lapping waves, and tasting the salt in the sea breeze.

On another note, but still with the idea of thankfulness, today is ANZAC Day.  On this day, half a world away in 1915, was the start of the Gallipoli Campaign.  At the end of that campaign, Gallipoli was still held by the Turkish defenders, with significant casualties on both sides.  Nearly a quarter of the New Zealanders who served at Gallipoli, lost their lives.  This campaign is seen as a defining moment in New Zealand and Australian history.

Although I am a pacifist, and strongly oppose war, I am still thankful for those who fought and gave their lives.

They went with songs to the battle, they were young,
Straight of limb, true of eye, steady and aglow.
They were staunch to the end against odds uncounted,
They fell with their faces to the foe.

They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.

From the Ode of Remembrance.

It’s been a hard few weeks… I’m struggling to make sense of this world and my role within it. At the moment it seems a pointless and never ending downward spiral. I’ve been told that I haven’t hit the bottom yet; but if this isn’t it, I don’t want to know what the bottom is going to look like.

Tomorrow is the funeral for our work mate… I still can’t believe she is gone. A former work mate came into work yesterday and told me of her final hours… the pain, screaming and finally, the coma. Within the context of our consistent suicidal issues, I’m finding it difficult to reconcile her pain and passing. Surely if this was a just world, we would be the one being buried tomorrow. We have no hopes or dreams… no plans for the future…

In the midst of this self-pity and confusion, we turn to music for comfort… In particular, Sarah McLachlan’s Angel… It soothes and has special meaning for us…

Paul over a MindParts said in his latest posting… “Perhaps I am meant to heal. Perhaps I am meant to live.” I used to have an idea of what “healing” and “living” would look like, but now I’m not so sure… I’m not sure of anything anymore…

Reading this over, I realise that it’s about as pointless as the post we deleted earlier today.  But there is a drive to post something here today, I don’t know why.  I’ll turn comments off, as I see this as self absorbed and pathetic…

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Now playing: Sarah McLachlan – Angel
via FoxyTunes

Over the weekend, the beautiful, vivacious, funny, amazing woman who ran the student side of the IT helpdesk passed away because of a brain aneurysm.  She was 28…

How is this world fair?

Do you choose these therapists yourself?

This was a question posed by Missing in Sight to my last entry.  Hmmm… Do I choose these therapists?  Do I really?  With each new therapist, I’ve appeared to go through the motions of choosing a new therapist… I’ve called around, asked whether they’re taking new clients and mentioned my dissociative disorder as a flag.  But that’s really been the extent of my search.  Because in all honesty, I become so grateful that someone is willing to work with such a dysfunctional impossible case as myself, that I go with the first person who will take me on.

This ties into Katie’s comment about rejection and also my fear of ending relationships…  Some part of me sees an initial meeting with a therapist as a binding agreement… almost like, if we stop seeing them, we’ve failed again.  I’m not sure if it’s tied to our need to stay invisible (look, we’re so normal we can fit in anywhere), or our need to not make trouble.  I know this is all tied to the dysfunctional messages and patterns of behaviour that I learned growing up.

It seems as if I become so fearful of being rejected by a therapist, that I do almost everything possible to ensure that they won’t want to see me.  A prime example of this, was an email I sent to a potential therapist…

Hi potential therapist no.1,

Possibly before you agree to see me, I should outline the diagnoses I’ve been given over the years, so you can decide if you want to go any further.  I label myself a difficult client… yes, my dysfunction is showing already :) I’ve been diagnosed with Dissociative Identity Disorder, Depression, Borderline traits (I’ve been tested, but fail to meet the criteria for Borderline Personality Disorder), Anxiety Disorder, and have chronic sleep issues.  I’ve seen four therapists in the last five years – two which were poor therapeutic fits for about 8 months each, a clinical psychologist on a short term contract through ACC and another therapist for about 3.5 years (who helped me through my abusive marriage, but didn’t have the skills to help with the dissociative and trauma issues).

So I come with baggage… I am motivated to change and will work hard at doing so, but I often don’t know how to change or what that change should look like.  I’m often stumped for words in therapy, and will sometimes get lost in the dissociation to the point where I lose most of the session.

You may wonder why I’m writing this out for you… and I know it would make most people turn the other way.  But, I’m hoping to give you an idea of the challenges I may present so you can decide whether you are able or willing to work with those.

If you are, please name a time and place and I will ensure that I am there.

Kind regards
CG

How many people would want to work with someone who emailed that to them?  Not many.  It could be seen as me trying to weed out the people who wouldn’t be able to cope with the challenges that I know I present in a therapeutic environment… but I don’t think it’s that.  It’s about setting myself up for failure and preventing the need to build up trust with yet another person.

But, potential therapist no.1 responded that she is experienced in dealing with what I present, and is willing to try and get my claim accepted under ACC.  Two other therapists have also said that they’re willing to meet with me to see if it would work.  Suddenly I have options!  I’m still a little unsure of how to do this process of therapist selection, but I’m trying to be mindful… trying to check out internally what happens when I read their emails or listen to their voice on the phone.

Today we met with potential therapist no. 2.  We talked for about 90 minutes and went over a great deal… It was scary, but also validating.  We talked about the care I’ve received in the past – what worked and what didn’t; what help I was currently receiving from the Mental Health Team and also what her approach to therapy was.  She doesn’t have any specialist DID experience, this showed with some of the wording that she used (a little clumsy).  But when I talked to her about our Polyvore work and this blog, she was interested in how we could incorporate these aspects of my healing into the therapy work she would do with me…  She talked about how I appeared to have been sort of shuffled around, and put in the “too hard” basket by many people…

It was all going really well, until she mentioned where she works as her full time job… She’s a lecturer at the same tertiary institution I work at…  There was a huge internal reaction to this news.  The whole system jolted… we’d just told this person we were DID and she worked at the same place we do.  If we went and saw her, we’d at some point have to talk about the secrets and then potentially run the risk of seeing her at work.  I’m not sure we can do that.  I don’t know if I can tell someone about my history and then smile at them over the counter later in the week as if nothing had happened.  When she found out where we work, she talked about how we could manage that, if we still wanted to see her.  She was really open and up-front about the issue, and reassured me that if we couldn’t cope with it, that deciding not to see her was not our fault…  We agreed that we’d think it over for awhile and see how it sat within the system…

We see potential therapist no.1. on Wednesday, and will call potential therapist no.3 on Monday morning to arrange a time to meet.  Since we’ve started getting people willing to work with us, it’s been interesting noticing the changes in the system… there’s anxiety about having to meet new people, but there’s also hope.  Yes, I think I’m actually feeling some hope for the first time in a long time…

Maybe I’m not such a hopeless case after all?

Got the email from Liz today, confirming that she will no longer be seeing us…

Yes, I probably have lost the plot… but anyway, here goes…

All morning I’ve had the children’s song “Do your ears hang low” in my head… over and over and over…  It’s not in “my voice”, but a younger ones voice.  I try to ask if it’s for comfort – the voice gets louder.  I ask if it’s because that song means something – the voice gets quieter.  I ask if it’s to do with Mr G. (our primary school teacher who sometimes ran the singing during school assembly) – the voice gets louder again.  I ask if it’s to do with the deputy principal – there’s total silence.

Ok… so does the voice getting louder mean that what I said was important, or when it’s getting quieter?  Am I finally losing my sanity, and will forever have the following lines ringing in my head:

Do your ears hang low?
Do they wobble to and fro?
Can you tie them in a knot?
Can you tie them in a bow?
Can you throw them o’er your shoulder
like a Continental Soldier?
Do your ears hang low?

So you get the full impact of this crazy making… here’s a hint at what I’m getting… over and over and over…

One hint, the voice is singing it in tune… that probably means that it’s from one of the ones who got us into the school choir.

Argh!!!

Over at Polyvore the group Adult Survivors of Abuse are running a friendly competition to come up with the sets which represent to you “How does it feel” to dissociate.  This isn’t an easy question to answer, as it can depend on the trigger, type of dissociation and the severity of the dissociation.  As an example, I can sometimes tell I’m about to dissociate as I get a tingling at the back of my head and neck, or the world tilts and it feels like I’m falling into a black hole… other times, the dissociation is so quick that I don’t notice anything until I come back an hour (or more) later.  When I discussed my dissociation with the first therapist that I saw, we talked about it being like a train that is speeding out of control…  it’s hard to know how to slow the train down, or whether you’re trying to get on or off it.  This was before I knew many of the grounding and distraction techniques I now know, but the dissociation still feels like an out of control train…  Hence the reason for my entry into the competition -

But the feeling of dissociation is more than that… it’s also about contradictions existing at once.  Over the past month or so, we’ve noticed our food issues coming back.  We’ve never been diagnosed with an eating disorder, and most of our food issues are generally hidden.  One therapist described our food issues as being tied to a sense of entitlement regarding our health. I’m not sure if she’s right or not, but our dissociation means that we can perceive our body as being different ages, shapes and sex.  With the return of the food issues, there is an internal battle raging between those who see themselves at either end of the weight spectrum…

One day I know I’m going to have to work on the food issues. I have raised it with several therapists, but they never seem to consider it a problem worthy of attention. I think this time the food issues are going to be a rough trip, the battle lines are firmly entrenched and there is serious retribution for any action which is perceived as going over those boundaries.

But probably the most consistent issue I have experiencing dissociation is the noise. There seems to rarely be a lull in the constant level of background chatter… I’m not sure how different this is from the usual level of internal noise that non-dissociatives experience, but it can at times be overwhelming, scary and confusing.

This is what happened to me last week with the “rupture” in the therapeutic relationship with Liz. It’s also the reason why I’m often left incapable of speech while in therapy. The conflicting messages and noise are so intense that it’s impossible to work through what the real message is that needs to be discussed.  This had become more of a problem during my sessions with Liz… it could be seen as progress, but so much of the noise was negative that I’m not really sure what it meant.  The noise has died down over the last day or so – except the noise related to the body’s weight, and I think this is tied to everything going back on “lock-down”…

Last week we saw the Mental Health Team psychiatrist and she asked that we write a letter to Liz outlining our concerns and reasoning behind our departure.  We did that, but haven’t heard a response…  The psychiatrist said that they will offer support for a one month period, and by the end of that time we have to have found another therapist… or gone back to Liz.  This has given us a deadline for either having ourselves sorted out to the point of everything being behind the dissociative walls again, or with a therapist.  We’re preparing ourselves for being without a therapist for quite some time…