Lucy In The Sound Dome With Diamonds

I’m not about to debate the true meaning of ‘Lucy In The Sky With Diamonds‘ by the Beatles, but it sprang to mind when thinking about writing this post.  Am I seeing diamonds in the sky?  No.  But the popular belief that the song has something to do with drug-laced hallucinations is appropriate.

No, I’m not doing drugs.  Well, not anymore than the small mountain of prescribed psychotropic and pain medication.  I am, however, living my life in a sound dome.  Where I go, it goes.  It’s actually very clever.

The connection for me is that I’ve been having hallucinations for six weeks now.  I am hearing music that is not there, nor can anyone else hear it.

I’m not seeing things, but I am hearing plenty.  Plenty of music, that is.  And while we’re about what ‘is‘ and ‘isn’t‘… I’m not psychotic (confirmed by a doctor!).  This is nothing to do with my mental health, although it’s fair to say that as time goes on, it is having a great effect on my mental health.  The music hallucinations I am having are related to my ears, and not some psychotic illness.

If you want to know more about music hallucinations, you can do your own googling.  What I want to talk about is how these auditory hallucinations are doing my head in right now.

You might think that six weeks of music that is almost constant in my waking hours, would be welcome, especially if you’re not having to pay for it.  But actually this is anything but welcome.  Let me explain:

  • I don’t have any control over when it plays, or at what volume;

  • I don’t have any control over what type of music plays.  Right now, I being inundated with full ensemble, church music.  Yes, that’s hymns, mostly with orchestra, choir and at times, a full pipe organ.  It’s not the type of music I would choose and actually having such a full exposure to this in my earlier life, it really does nothing but press emotional buttons;

  • I don’t have control over the quality.  I regularly hear wrong notes and off-key singing.  I regard myself as enough of a (even if lapsed) musician, that I find the errors mostly offensive.  How about when the instruments aren’t in time with the voices?

  • Sometimes my brain gets really clever and plays two separate tunes at once.  That’s fun.  Actually no it’s not, it simply becomes noise.

I don’t know why my brain/ears are choosing to do this.  That’s slightly freaky especially as with time, it seems to be getting worse and louder.  I’ve had a medical opinion (as I mentioned in What’s Fair?) but I’m still waiting to see the specialist.

Musical hallucinations running about 95 per cent of every day are also affecting the rest of my life.  Again, let me explain:

  • As an introvert, I like my silence.  Oh, how I miss it.  The only thing that successfully drowns the sound is the television (as long as I totally focus on it and don’t just have it as background noise).  But then that’s just more noise.

  • As someone who is hearing impaired and who has worn hearing aids for the past six years, I also find background noise stops me from hearing the things I need to hear.  Now days I don’t often listen to music for this very reason.  But now I am overloaded in background noise flowing from my left ear;

  • As someone who needs plenty of sleep, I need quiet.  I am trying to use a Sleep App and while that generally works for me when I am dealing with a loud case of tinnitus, with the hallucinations I just find the Sleep App creates more noise.  Oh, if I could temporarily amputate my head and leave it in another room!  Okay, I’m only half joking;

  • As a fibromyalgia sufferer, I need stress-free everything.  With an increase in stress, partly because of the noise and partly because I don’t have any definite knowledge of what is really going on in my head, that all adds to more stress in my life.  That is resulting in more pain, more fatigue and what seems like permanent brain fog.  None of that is good or welcome;

  • As a reader (yes, including your posts) I simply can’t concentrate to read when I have this noise going on.  I’m not sure if that is a by-product of past Electro Convulsive Treatments (ECT) or the brain fog related to fibro.  What I do know is that I am really struggling to read anything;

  • As a writer (and blogger), the same applies.  That’s part of the purpose of this post to explain to you why I haven’t been posting regularly.  I apologise, especially to the many who have recently followed me.  There’s nothing like following a blogger and never getting any new posts to read.  Today I am using my trusty Sleep App again as I write.  It’s not really working, so if this is the most poorly written of all my posts, you’ll hopefully understand why;

  • And finally as someone with a small pile of mental illnesses.  I started to realise last week that these hallucinations are affecting my mental health.  I’m fighting not to slide back into Depression.  Some of the worst of my Borderline Personality Disorder (BPD) traits are rising to the service and I find myself constantly argumentative and irritable.  Trying to withstand idiots has been beyond my ability at times, and I want to change the world… NOW!  Oh and one more thing.  It doesn’t seem related but I have absolutely no interest in eating right now.  That’s not good for someone with a history of Anorexia but I’m watching that one. Right now all of these issues have me taking a break from Social Media (except for WordPress).  Hopefully that way I won’t offend anymore people.

That’s probably more than you wanted to know but as you can see, these hallucinations are affecting my whole life.  I have a list of other symptoms for the ENT specialist when I get there.  I really hope s/he can help me as there wouldn’t be much worse than being stuck with these hallucinations for life.  That scares me as much as anything.

Please don’t give me advice (unless you are a ENT specialist).  I didn’t post this to get advice, but more to explain just what is going on for me and why you haven’t seen much of me lately.

My quote to finish is one more problem I have right now.  And it is perhaps the scariest of all.  I really struggle with it at night when I think the noise I can hear is someone breaking in.

“I no longer knew what was real and what wasn’t.  The lines between reality and delusion had become so blurred.” 

― A.B. Shepherd, The Beacon

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What’s Fair?

I caught myself out last week, saying a sneaky little “It’s Not Fair!!!”  It’s easy when I take a somewhat child-like view of ‘everything is against me‘ and so…  ‘it’s not fair‘.  It’s so easy to slide down that way and to end up feeling completely sorry for myself.

In my family, my second oldest nephew is well known for his “it’s not fair!“.  Of course, being the second oldest, and worse still, the middle child, is first on his list of what is ‘not fair‘.  There’s sometimes bigger issues at stake for him too.  I’ve heard his father (my second oldest brother and a middle child) give Master Thirteen his reasoning for why actually it is fair.  It’s something to do with being fair or equitable.  Actually it’s lost on me, but then his speech was never for me anyway.  Sometimes though, it would be helpful to have someone who would remind me of a better way to look at things than ‘it’s not fair‘.  Sometimes it’s too easy to forget.

Last week I went to the doctor after a few weeks of what seemed concerning and slightly weird symptoms.  I’m never very good at getting myself to the doctor but googling some of my symptoms left me with the clear instruction to do exactly that.  Go to the doctor.  Now.

To cut a long story short (I know you don’t have all day), the doctor started using the words ‘likely tumour‘ and began the process referring me to an ENT specialist.  As he said, my symptoms were out of his league.  I guess at least he was honest.  Then again, that ‘T‘ word is a bit like the ‘C‘ (cancer) word.  Words we don’t want to hear. I didn’t want to hear what he had to say.

I think I was only in the car park when I began on my ‘it’s not fair‘.  Doesn’t it seem like some people go through life with not a problem?  No serious illnesses, no big crises, not even huge relationship breakdowns.  They just glide through life.

And that’s where I got in my rating of fair.  I didn’t need to go any further than mental illnesses and chronic physical illnesses.  It seems like it’s one thing after the other.  I won’t go through all my other woes.  If you’ve been reading you will have an idea of them.  If I simply look back at the last five years?  Wow!  Crisis after crisis.  Wouldn’t it be nice to have a quiet patch?  A space in which life would just flow easily?  Is that too much to ask?

I started to think about what ‘fair‘ actually means.  I didn’t get very far.  What dictionaries suggested was that “fair  was the right way to treat someone, and what they deserve“.  But what does that mean?  Who gets to decide what is right for my life compared to what is right for say, yours?  And even more so, who gets to decide what I deserve?  That starts to suggest karma, and I have to admit that I actually don’t believe in karma (I’ll probably be shot down for that one).  Karma, in terms of retribution makes no sense to me for the same reason as fair makes no sense.  Some people get such a rough deal in suffering when they’re actually very good people, where others just sail through life and are scoundrels.  I can’t accept that this is because of what they might or might not have done, or even what they deserve.

So I’m choosing not to say this latest blow at the doctor’s surgery is fair or not fair.  It just is.  It’s just the next thing that I’m going to go through.  It scares the hell out of me but I don’t deserve this any more than anyone else would.  It’s not about fair, it’s simply about what is.

In the meantime I just have to wait.  The New Zealand Health System is such that I just have to wait my turn to see the specialist.  The doctor told me I am likely to get bumped up the waiting list because of what he called the serious nature, but I still have no idea how long that will take.  Hopefully not too long as some of the symptoms are getting on my nerves, and I sure can’t claim to being a patient person.

“The world isn’t fair, Calvin.”
“I know Dad, but why isn’t it ever unfair in my favor?” 

― Bill Watterson, The Essential Calvin and Hobbes: A Calvin and Hobbes Treasury

Involuntary

‘Involuntary’ is a word many of us feel uncomfortable using in terms of mental illness.  Personally I have always hated the fact that sometimes an involuntary admission to hospital is exactly what is needed.  I’d like to think that we are always in control of ourselves enough to make the appropriate decisions on care for ourselves.  Unfortunately it’s not the case, and it’s something that has come to my mind this week.

I think I had about four times when the decision to hospitalise me was taken out of my hands.  That’s out of many more ‘voluntary‘ admissions – more than I can count over nearly 10 years.  A couple of times my (now ex) husband made the decision for me, the others saw the decisions made my the hospital staff because there was simply no one around to make that choice for me.

Of course there was no ‘choice‘ for me.  I kicked and I screamed.  Literally.  I was a totally different person than the person I am today, simply because I was so unwell.  I hated my husband, although usually I loved him.  How could he do this to me?  He knew hospitalisation was the last thing I wanted, but he did it anyway.  Ouch!  That really stung!

When it wasn’t D making that choice, it was people who didn’t even know me.  That stung too, and it felt like the whole world was against me and there was no one around who loved me enough to be able to save me from what I dreaded.  Of course, no one was going to ‘save’ me, in the way I meant.

I had all the psychiatric treatment you could imagine across the years, but each time I knew that it boiled down to being my choice.  The ironic thing though, is that even when you are voluntary patient, you know how easily that can change. Strangely you only know that once you are inside the walls of the hospital.   ‘Involuntary’ can get slapped on you so fast that you wonder what ‘voluntary’ really meant anyway.

I started to realise this week just how grateful I now am, for those decisions being taken out of my hands.  I read (as you possibly have too) of a woman, who struggling with mental illness and the ongoing effects of prolonged domestic abuse  committed a crime.  She’s now facing charges for the attempted murder of her children.  Apparently family members tried to have her hospitalised the day before but she wouldn’t accept the hospitalisation.  Obviously I don’t know all the details, but I wish for her that decision was taken out of her hands.  It sounds like she was too unwell to be having to make that choice, and of course the choices she made in the next 24 hours were catastrophic.  I dearly hope that somehow she gets the treatment she needs anyway, instead of the current round of judgement and condemnation.

When I was admitted on an involuntary basis, my life was at risk and I’m ashamed to admit that one time, it was a life other than my own that was at risk.  Me being ‘locked up’ was to save that life.

To be ‘locked up’ at the discretion of a judge was the last thing I wanted.  But had that not happened, I probably wouldn’t be alive today.  And other possible consequences mount up in my mind beyond being able to put into words, nor is it something I want to talk about any more openly in such a public forum.

I am glad my husband signed my rights away those times.  I have no idea how difficult that must have been for him, simply because we don’t have a relationship now where we could talk about it.  It must have broken his heart to see his wife so unwell that he needed to take this step.

To commit someone involuntarily must be easier when the family don’t have to be involved, as was the case for the other two times.  I have never been in a position where I had to direct someone to take a loved one’s rights away but finally, all these years later… I can see that they did the right thing.

So to D, and to those hospital staff, thank you.  I hated you at the time, but you saved my life. For that I will always be grateful.

“The horror of the Pit lay in the emergence from it, with the return of her will, her caring, and her feeling of the need for meaning before the return of the meaning itself”.” 

— Joanne Greenberg

River of Flowers, 2014

“What’s all this talk about an earthquake?” says Mum.

That was my 86-year-old mother’s question for me when I arrived at her home a few days ago.  I was astounded that she didn’t know.  It was pretty much ‘the’ topic here in the past week.

Today is the 3rd anniversary of the deadly earthquake that struck my city of Christchurch at 12.51pm on 22 February 2011.  Naturally the anniversary has been in the news this week, but Mum couldn’t remember an earthquake being at this time of year.  Actually, I was really thankful.  This woman had lost so much in that earthquake.  More than most.  She deserved to have it lifted from her memory for a bit.  I was glad, for once, that she had no idea what I was talking about.

As we then talked, her memories came back, but we had over 12,000 earthquakes over a period of about 18 months so it wasn’t surprising that she couldn’t remember one of them. Then she was confused as to which quake she had fallen over in.  I assured her that in that quake, thankfully, she had already been sitting down when it struck and she managed to remain in her chair as her home fell to pieces around her. My father though, was thrown to the floor.  So was I.

Heathcote River, Christchurch, 2013

River of Flowers, Heathcote River, Christchurch, 2013 (Used with permission)
Image credit: River of Flowers, Healthy Christchurch and Avon Otakaro Network
See:  Healthy Christchurch on Facebook or their website Healthy Christchurch

As part of a range of commemoration events in the city, there is one that I find draws me each year.  The River of Flowers is an opportunity for the public to share their experiences and hopes for the future by throwing a flower into one of the two rivers that flows through the city, and by writing a message of hope and tying it to a tree as various points.  Throwing my flower into the river which has always been important in my life, is for me, letting go for a few moments of the sadness, trauma, loss, and worries about the future.  It feels healthy to me, and I like that.

Natural disasters, like our quakes, happen across the world all the time.  Something that had never occurred to me until I lived through this, was that the aftermath goes on for years to come after a disaster.  When the media and their cameras have all gone away, and the rest of the world isn’t hearing anymore, the sad reality is that people go on suffering.

Three years on and my life is still unsettled (to say the least).  I now have a chronic illness (fibromyalgia) which is attributed to the trauma of the quakes.   I live in a severely damaged house and still have no idea how that will be fixed.  My house is pretty cold in winter because of the damage, but aside from that, I’m simply used to the damage.  That said, don’t suppose for a minute that I like living in a house that is now tilted on a bit of an angle.  Or the curtains blowing in the breeze even though no windows are open.  But it’s just life here in Christchurch and I know there are people here worse off than me.

I know full well that mental health is a major issue in my city.  Children are still badly traumatised, as well as many adults.  Free counselling sessions just don’t go far enough.  Three sessions per person is not enough.  The use of anti-depressants has risen significantly.  The psychiatric hospital is overflowing and they’re talking of putting inpatients into caravans out on the lawn.  Suicide statistics tend to run behind by a few years, but I understand the numbers are sadly picking up in my city.  Let’s not forget too, that there is a major housing shortage here now as well as significant poverty.  These both contribute to the state of mental well being.

But this is what really disturbs me…

A year before our deadly earthquake, Haiti (Port-au-Prince) suffered a quake too.  220,000 people are estimated to have died on 12 January 2010.  In Christchurch, there were officially 185 people died.  At the height of the Haiti quake, one and a half million people were displaced and sheltering in tent villages.  That’s just huge.  And it makes me say “what have I got to complain about?”.

While I wonder about the ongoing mental health of those who lived through the quakes here in Christchurch, I wonder even more what is being done for the people of Haiti.  Do they get access to free counselling like we have?  Are the children getting the resources that are being pumped into Christchurch.  It is so difficult to know what is being done for victims of natural disasters when the lights go off on the media bandwagons.  That said, I have a fair idea of the answers to my questions.

Whether it is an earthquake (or 12,000), a volcanic eruption, a hurricane, a bush fire or any other devastating event somehow we need to remember that life afterward is changed and will probably never be the same again.  Not just the physical welfare of victims matters, not just the infrastructure and buildings that have to be rebuilt, the mental health of victims will continue to be a major issue for years to come.

Somehow I think we forget, once the media have gone, and even more so we forget when the media never really got there.  It seems to me that third world countries recovering from disaster, do it very much on their own.

While today, I remember a day I never want to experience ever again, I want to remember people in other countries doing similar recoveries.  I have been fortunate to have access to welfare, Red Cross funding and the like.  I never ended up in a tent city.  I have insurance cover to rebuild my home (when they finally get to it).  But for so many people there is none of this, and those people are the ones I have on my mind today.

“How strange it (the earthquake) must all have seemed to them, here where they lived so safely always! They thought such a dreadful thing could happen to others, but not to them. That is the way!” 

― William Dean Howells, A Sleep and a Forgetting

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Seeking… Opinions

Caution:  This post contains discussion of suicide attempts and their effect on those close to the person who attempts.  However the post contains no details of specific suicide attempts and no images.  Please know that I am in no way offended if you choose not to read this post.

Sometimes it’s really necessary to gather the opinions of others  in order to find a way forward.  That’s where I’m at right now.

Recently someone in my life expected me to visit, and when I didn’t, she got worried.  I had said a visit would be unlikely because I was sick (fibromyalgia) but that was in some way misheard.  Next thing I get a phone call asking me whether I was killing myself.  She jumped to a conclusion that because I hadn’t visited, then I must be in the process of committing suicide.

At the time, my mental health was pretty good.  I certainly hadn’t been entertaining the thought of suicide or any sort of harm to myself.  It was my physical health that was the issue but I simply had to ride that out.  I had given the person no reason to think I was in danger, and she later agreed that there was no reason for her to be so concerned.  But I recognise that something must have triggered her worry.

I was pretty surprised by the concern she expressed.  I thought, “where did that come from?”  I knew that somehow I had to get my head around it and understand where she was coming from in order to be able to address her concern.

Jump back 16 years and I was clearly labelled by my psychiatrist and mental health workers as having “chronic suicidal ideation“.  That is, suicide was something I was pretty much constantly thinking about and planning.  I had a number of suicide attempts across a period of maybe four years, including two very large and ‘serious’ attempts (actually all attempts are serious).  Even when I stopped making attempts (the last was 16 years ago) I continued to have those chronic thoughts for a number of years yet.  It seemed no amount of therapy, ECT, medication or hospitalisation would shift the thoughts.  Even though I wasn’t actively trying to kill myself, I was still very much thinking about it.

Time has changed that though.  As I have written here previously, I have found some hope and purpose for living.  I am not having suicidal thoughts any more, although certainly there are still the tough times.

The person who raised concern for me the other day lived through all of this, although at a geographical distance.  I don’t in any way want to undermine the effect that my actions, and what she knew of my thoughts, had on her or other people close to me.  I know she (and others) literally waited for ‘the’ phone call, and at one stage she had every reason to believe she had got it.  That must be an incredibly painful way to live your life, not knowing what would happen next.

I suspect that the history of all my attempts and chronic thoughts had a much bigger impact on my family and close friends than I ever thought.  I was after all, caught up in my own hell and, at the time, had little appreciation of theirs.  Not because I didn’t care about what my actions were doing but simply because I was drowning in my own stuff.

A psychiatrist once told me that in his opinion, once you had carried chronic suicidal thoughts with you, that it isn’t something you could completely put behind you.  What I’m wondering is whether it is also impossible for loved ones to put behind them?

After all that happened to me all those years ago, am I always going to have a ‘suicide risk‘ label hanging around my neck (in the minds of those who love me)?

I want to say “can’t we put this in the past and move on?”  But maybe it’s not so easy.  Maybe they see the words ‘mental illness’, which will always be in some way part of my life, and continue to live in fear of getting ‘that‘ phone call.  Maybe when they expect me to turn up and don’t, they automatically now think ‘this is it‘?  I really hate the thought that they live in such fear for me, even after all these years, but is it something impossible to let go of for them?

I’ve never been in the situation my family were in for so long when I was chronically suicidal, but I want to see it from their perspective.  I admit I was just a bit affronted when I got this phone call.  I thought ‘can’t we let this go?’, ‘at what point do I become free to move on from that time in my life?‘ and ‘are we always going to have this hanging over us?‘.  To me, I want this to be the past, but is that too hard or even impossible for those who had to stand by and watch (and wait for the phone call)?.

So I’m wondering what you think?  Maybe you’ve been in the same situation as me.  Then again, maybe you’ve been a family member/friend who had to watch as your loved one went through this.  Or maybe you’ve got yet another perspective.

I know suicide as a subject is really difficult to discuss for all of us, and if you can’t or don’t want to, then that’s fine.   I just want to try to understand whether my loved ones will always carry this fear with them.  And is it something that is possible to resolve?

PS.  Please understand that I have absolutely no criticism of my family or others who loved me through this period of my life, and I have no desire to hurt them beyond what I have already caused.  I know enough to know that it was an incredibly difficult journey for them, as it also was for me.  I appreciate, beyond words, that they stood beside me at all.

“Time does not heal wounds. It’s a body’s ritual that does. The instinctual cleansing with rain or other waters, the application of salves. Despite the sting. Even neglected, the body begins to take care. To repair itself. Blood clots, tissues regenerate, flesh scars. Soon, the thin white line is the only evidence of the pain. It is the body, not time. Time does nothing except create distance between the body and that which caused it harm.”

― T. Greenwood

Who’s The Bully Now?

A few weeks ago I wrote about compassion (see Where Does Compassion Fit?).  That post came from a number of issues including subjects that were being discussed by other bloggers, as well as a slowly developing personal belief about how I treat others.  Several issues came up from the comments to that post, as well as from that which I have been reading about in various places.  So I need to return, in some way, to the subject or I will never get to sleep at night…

I was about nine and sitting on the outside fire-escape stairs at school one afternoon.  The class bully (M) came and sat down next to me.  She wanted the watch I was wearing.  This watch was a gift from my grandmother, who had gifted three of her old watches to her three grand daughters.  The watch was probably about 70 years old at that stage.  It was gold and was very precious to me.  M pulled the watch (on my wrist) towards her and then suddenly let go.  Naturally my arm flew back into the brick wall I was sitting next to.  The glass on the watch smashed as it hit the bricks.  M seemed happy with what she had done but left me in tears.

That afternoon when I got home I went in search of my Dad.  I found him in the church (he was the minister and so the church was next door to our home).  Dad took me on his knee as I told him what happened.  I told him I wanted to get M back.  I don’t remember the whole conversation but I do remember what he told me about revenge.  “Two wrongs don’t make a right” he said.  I wasn’t going to fix the matter by trying to hurt the bully back.

Something that struck me in that last post on compassion, is that for many people they hold in their heads the idea that there are a some people who don’t deserve compassion. “They’re not human beings, they’re monsters“.  I struggle with that one because I believe that those ‘monsters‘ (a human being is never a monster in my mind) are simply people who have been on a different journey.  And who am I to judge someone else’s journey?

I’m not saying that if people have done harm and maybe have some criminal issue to address, that they shouldn’t be held accountable.  I’m not saying if they have hurt me, then I don’t have the right to be angry and hurt.  I’m simply saying that for me, those ‘monsters‘ are still human beings and so still deserve my compassion.  I can address the issue of the hurt they have caused me, but I do it with compassion.  Not always easy to do, but for me it’s worth trying.

I know that’s a hard one to swallow, and I can hear people saying that I just haven’t been hurt badly enough by those ‘monsters‘.  Actually I have had more than my fair share of hurt from those people, but I simply don’t see that I have a right to turn around and seek to destroy them.  To write them off as not even worth being called human.

Maybe my compassion for them takes a different form than for someone who hasn’t harmed me, but I still have a responsibility of compassion toward my fellow human being.  And actually, it’s the way I prefer to be.  It, in time, enables me to let go of the anger I felt.

I know many people might disagree with me.  That’s ok.  What I’m doing here is thinking out loud for myself.  I am in no way telling you what you should do.  I believe that is for each of us to work out personally.

The purpose for me blogging is not to ‘make it‘ to the ‘cool group‘ of bloggers.  Actually until a few weeks ago I never knew such a group existed.  So I’ve now read, apparently it does.  I don’t want to be cool.  I don’t need thousands of followers.  I am happy to have the people who read my blog, as I really appreciate them taking the time to read what I write.

I have never been ‘Freshly Pressed’, and actually I suspect I never will be.  I don’t write the right things for that, and again, it’s not one of my goals.  Perhaps if my goals as a blogger were different, then I wouldn’t write posts such as this but I need to express myself when I get really disturbed by what I see/read.

Lately I have seeing some really hurtful things being posted, attacking people, often all in the name of getting one back.  I think it’s really sad if that’s what blogs are used for.  Naming and shaming. Revenge. Getting one back.  Bullying.  Even standing by your friends.  Whatever you call it, all it is does is hurt people (often innocent parties too) and frankly puts me off wanting to be a blogger, let alone read blogs.  To be able to write and express ourselves so freely makes us fortunate as writers.  We shouldn’t abuse that.

Many of us have histories of being hurt, abused and badly treated.  For many of us expressing that hurt is what blogging is about.  But it strikes me that having experienced these things in our lives, we should have a much better sense of how much harm we inflict when we choose to attack others.  I continue to want to treat other people as I would want to be treated.

I want to be clear that I will never use my blog to attack another person.  I am quite clear that if I have an issue with a person, then I can deal with that directly, but it is not the way that I want to blog.  If I find myself having done that, then it will be the last post that I write.  I also don’t intend to follow blogs anymore where individuals are being attacked in ways that seem inappropriate and unfair.

I can’t tell others how to behave, but just think about this… do two wrongs make a right?  If so, then who has become the bully?  And what do we think of bullies?

Personally I can’t stay quiet when I see bullies in action.

“If you are neutral in situations of injustice, you have chosen the side of the oppressor. If an elephant has its foot on the tail of a mouse, and you say that you are neutral, the mouse will not appreciate your neutrality.” 

― Desmond Tutu

I Am Not A Demented Chameleon!

Do you remember back in the playground when the overweight kid got called “fatty”?  And the one who told some fibs was branded “liar”?  There were endless names that children named other children without a care in the world.  We (and yes, I probably was one of them too) didn’t know how hurtful those names could be.  Perhaps half the time we didn’t even know what the words meant.  We had simply heard them from others, and thought we’d give them a try ourselves.  I think it’s where the re-phrased “sticks and stones will break my bones but names will always hurt me” fits.  And yes, those names did hurt.

Today, I and all my friends who have Borderline Personality Disorder (BPD) with me, got called names.  We were called  ‘demented chameleons‘.  Apparently Borderlines (like Sociopaths) they said, are ‘demented chameleons‘.  The original name was tossed at sociopaths (as the site was focussed) and my thoughts about that are another issue   I just got angry when I saw someone throw Borderlines into the fire, calling us the same name, with probably no thought at all.

It’s something that I can walk away from.  I’m used to it.  This type of name-calling happens for people with BPD all the time sadly.  Actually it happens to all people with mental illness all the time.  I can walk away and that’s what I did.  The person who labelled me a ‘demented chameleon‘ probably doesn’t personally know anyone with BPD, and simply read it somewhere on one of the awful websites that set out to degrade us.  It is probably a combination of stupidity and ignorance… and so it deserves my walking way.

The difficulty I am left with though, is that ignorant comments like that get read by others, and believed.  It’s what builds up the stigma against both BPD and mental illness as a whole.  That’s what really gets my blood boiling.  How dare they blast me with their stigma but also contribute to the overall stigma that all of us with mental illnesses face.

This is my idea.  For each time I see such a combination of stupidity and ignorance, I need to post here, my opposing view.  Maybe it might not be the same people that read both accounts, but in my world one can still outweigh the other regardless.  If people choose to feed the world with negative views of me, then I can feed the world with the positive.  Does that mean you are going to be reading posts like this everyday?  No, that’s not my intention.  But when my blood boils, I need to speak out.

People with BPD are not ‘demented chameleons“.  If you stop to get to know someone with BPD you will find that actually we are beautiful people.  We are generally very caring people.  That’s part of our disease.  But we are not demented.  While we may change aspects of ourselves in how we come across to the world. we are not cynically one thing one day and another tomorrow.  Moreover that changing does not happen out of an intent to hurt and manipulative.  It is simply who we are as we battle with the internal struggle to own who we are.  It’s not easy having BPD, and name calling such as this doesn’t help us.

I suspect that most people have no idea about BPD.  The label tends to draw a blank expression on the faces of those who hear it.  BPD is  not well known (like say, Bipolar) and is certainly not well understood.  But I will not sit quietly and see myself and my friends named as ‘demented chameleons‘.  That simply comes from ignorance.

And now having said that, I walk away and breathe.  Frankly, the people who choose to live in such ignorance are missing out on you and me.  Emphasis on the missing.  I almost feel sad for them.

Ending on a lighter note… I have been called a ‘demented chameleon‘ but I’m still waiting for the ‘incorrigible’.

Image credit: Used with permission of Sue Fitzmaurice. Facebook: Sue Fitzmaurice, Author

Image credit: Used with permission of Sue Fitzmaurice.
Facebook: Sue Fitzmaurice, Author

PS.  Victory after Publishing.  I’m happy to see that the offending material has now been taken down

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 

― Maya Angelou

Where Does Compassion Fit?

I really started to learn about compassion when I made a decision to love someone deemed by others to be unworthy of that love. I started to understand the cost of compassion when I was judged on that decision.  When I was going to be loved on the basis of that decision.  Then I knew that compassion is easy when people are nice, animals are cute and cuddly, and when no one’s done anything that might harm us.

When others stand and literally spit at you and call you names, then you start to realise that sometimes compassion has a cost.  Yet I still want to be a human being who has compassion for my fellow beings.  It’s simply a harder battle.  It simply makes me be sure of what (and who) I believe in.

We talk of compassion as something that rolls off the tongue, but I’m starting to realise that those who practise it most pay a price when they choose to exercise it to those who the rest of the world deem unworthy.

“Anyone can slay a dragon …but try waking up every morning and loving the world all over again. That’s what takes a real hero.” 

― Brian Andreas

I thought I started to learn about compassion as a teen.  I don’t remember it being raised earlier, although I am sure it was implied.  When people hurt me, I was told to have compassion for them.  Usually that compassion came with the word ‘Christian‘ in front of it, although I have never understood why.  My experience is that when compassion is prefaced by religion then it sadly comes with conditions.  Some people are deemed unworthy of compassion simply because they choose to be different.  That just screams ‘wrong’ to me.  It did then, and it does even more so now.

But still, that’s what I was taught.  Put aside my own hurts and be compassionate towards the ones who had hurt me.  As a teen that was really hard, especially when I had been hurt badly.  It seemed to me that no one was being compassionate toward me.  My hurt didn’t matter and I learned from that, rightly or wrongly, that I didn’t matter.  I couldn’t understand people who loved me telling me in this way that I didn’t matter. Although they claimed that’s not what they were doing.

As I’ve grown I have distanced myself from the prefaced type of compassion.  It seemed false to me, although I hasten to add that there are some very loving and caring people in any community.  It just seemed inconsistent and uninterested in my needs or my beliefs.

Now I see compassion as something that all human beings should have for all other beings.  But as I’ve already suggested, it’s perhaps hard to be compassionate when you’ve been hurt.  That said, I don’t believe it’s impossible.

Last year I was hurt very badly by someone.  While I was still picking up the pieces, that person accused me of hypocrisy.  I was accused of writing in my blog about compassion, yet not showing it to the person who hurt me.  Did I laugh or did I cry?  I admit that accusation stopped me in my tracks, because I knew it was something I had blogged about and I needed to question my actions since.  For a while there, it was difficult to write at all.  I also knew that the person accusing me had hurt me bad yet I had done nothing to deserve it.

I eventually came to the conclusion, that I hadn’t been hypocritical.  The person who had hurt me was entitled as anyone to my compassion, but I was also entitled to theirs.  Is that confusing?  Hopefully not.  It came back to that issue of how to be compassionate when you’ve been hurt.

Actually it led to a realisation that I needed to be able to forgive their actions/words in order to have compassion.  It didn’t come immediately, because I still hurt like hell, but it has come since.  It didn’t fix the relationship (that won’t happen) but it gave me some peace, and actually, that was enough.

As human beings I think that we make judgements about who does, and doesn’t deserve compassion.  I’m not convinced that the judgement is mine to make.  Who am I to determine who deserves compassion?

The reason for this post comes from things I’ve seen, heard and read lately, on a number of different subjects.  Watching people determine that they have the right to destroy another person’s life rather than have compassion.  I’m not referring to anything specific because it’s there every day, anywhere we look.  Often that destruction occurs of people who are unknown to the destroyer.  They don’t even understand the effects of their actions.  They simply don’t know who they choose to destroy.

I’m not perfect.  I make mistakes, and maybe at times I don’t have as much compassion as I should for someone.  We’re all human.  And when we’ve been hurt, compassion seems next to impossible.  It makes me so sad how easily, we as humans, can set out to destroy others, and then we congratulate ourselves on a job well done without stopping to think of the price, without stopping to think of the alternative… compassion.

So you think I’m crazy?  No.  Just thinking about another way of being.

It’s not my right to destroy another, but I believe it is my job to offer compassion where I can.  I was told recently that if I had compassion for a person who had hurt me, then I hadn’t suffered enough at their hands.  The person who said it hardly knew me and certainly didn’t know of what I had, or hadn’t suffered.  I disagreed strongly with that view for so many reasons.  But mostly I just don’t see it as my role to destroy others.

I know all too well how hard it is to be compassionate towards a person who has hurt me.  Being hurt doesn’t give me the right to hurt back, although I know that’s what comes naturally.  I think if someone has hurt me and I find it hard to give compassion to them, I need to back off  (and probably shut my mouth) rather than seek to destroy.  Eventually I will work to a point of peace again, and maybe then I can find that compassion.

In case you’re wondering, this is all me just wondering out loud.  I’m working out something for myself.  I’m not saying that it’s how it has to be for anyone else.  Although I think for me, it has to be.

“Deserves it! I daresay he does. Many that live deserve death. And some that die deserve life. Can you give it to them? Then do not be too eager to deal out death in judgement. For even the very wise cannot see all ends.” 

― J.R.R. Tolkien, The Fellowship of the Ring

Prescriptions And Privacy

About a month ago I saw my doctor, a General Practitioner.  It was just a routine appointment, although it quickly went from routine to fascinating when he said he had been wanting to talk to me.  The result was that after two long years of debating with him my need for adequate pain medication, he finally agreed to prescribe some.

He had previously refused, in spite of acknowledging the level of pain I was experiencing from fibromyalgia, because he believed that my history of mental illness would mean that I would get addicted to the stuff and my mental health would suffer.  One of my arguments was that my mental health was suffering already as a result of the pain I was in on a daily basis.  For some reason unknown to me that argument seemed to count for nothing to him.  It seemed that he didn’t accept it and so was only prepared to let me use over-the-counter medications.  The problem with those is that they did nothing to relieve the pain, perhaps because they are designed to treat a different kind of pain.  Our argument went on over the months.  When I felt I had some fight in me I would raise the issue, but basically he was quite clear that he would never prescribe anything stronger and more appropriate.

Let me say at this point (in case you’re wondering) the easy thing to do would have been to change my doctor.  For me though, that has some difficulties related to my past experiences of doctors.  More about that in a future post… when I’m feeling brave.

In the meantime, what changed my doctor’s mind?  It seems he felt a little backed into a corner.  At an earlier appointment he had arranged for me to have some short-term counselling to deal with a specific unrelated issue that had been affecting my state of mind.  It was only to be six sessions, which always seemed too short, but it was free and it was available.  I had no other options and so I took up the offer.

I had seen the counsellor twice when I went to my doctor a month ago.  That was what my doctor wanted to talk about.  He proceeded to read out to me word-for-word something I had said to the counsellor, on my second visit, about my doctor’s refusal to treat me with pain medication.  I was totally gobsmacked to find that the counsellor was giving my doctor a written report of my counselling sessions.  This was not something I had been told about, nor had I given permission for him to share the details of my sessions with anyone.

That was the end of the counselling sessions.  I guard my privacy carefully and I expect that when speaking to a counsellor or therapist that what I say will remain confidential.  I accept that if I am at risk of hurting either myself or someone else then the counsellor may have to call in emergency services but I could never accept that my doctor needed to hear word-for-word what I said when I was no where near being in a crisis state.

Well that might have been the end of the counselling, but for some reason (he didn’t explain) my doctor didn’t appreciate what I had said to the counsellor, gave me a small lecture about “keeping secrets from him”  (really?) and then handed me a prescription for medication to treat severe pain.  Weird.  It’s like he knew he was discriminating against me and was waiting to see how long he could get away with it.

I finally had my prescription!  Yay!  The only problem is that a month on I declare it totally useless for me.  If my body is anywhere close to horizontal, the medication will put me to sleep (which is one way of dealing with pain) but it does absolutely nothing to take away the pain.  Actually if anything the pain has been worse in the past couple of weeks.  I wonder is he just giving me sugar pills (unlikely, I hope) or just a very small dose?  This coming week I will be going back to my doctor to keep fighting.  I have tried that drug but now I need another.  The fight goes on.

Gotta love doctors (and counsellors) like him.

“Life isn’t as magical here, and you’re not the only one who feels like you don’t belong, or that it’s better somewhere else. But there ARE things worth living for. And the best part is you never know what’s going to happen next.” 

― O.R. Melling, The Summer King

My Letter To America

It’s pretty clear to me that readers of my blog from United States outnumber all other countries by leaps and bounds, and because of that it’s important for me to say that I know what I am about to say might not fit too comfortably with those readers.  I know my country of New Zealand and yours, are quite different.  It is over twenty years now since I visited your country and I know how different what I saw then was from where I live.  Even though we might look the same, or similar, I think it is fair to say that our culture and society is quite different.  This post, which is basically about the use of guns, is not my attempt to sway your opinions on gun laws but rather I want to acknowledge that your environment is different to mine but clearly both have some issues to address in terms of guns.

In the past few days, New Zealand has been rocked by the news of the murder of two children, aged six and nine, (by their father) followed by the suicide of their father in Dunedin, one of New Zealand’s four largest cities.  It was not a mass shooting.  It is 24 years since we had a mass shooting in New Zealand (Aramoana, 1990).

The father shot dead the children in their beds, before turning on gun on himself.  Those children come from a school now in mourning, and while I hate to say it, I suspect this type of incident happens every day in your country.  In my country though, it is not common, thank God.  The mother of the children, the man’s ex-wife, had run next door to get help.  It’s hard to begin to imagine the hell she must be going through now.

The man apparently had a mental illness and was on medication for it.  To his family’s knowledge he did not have a firearms licence, necessary in New Zealand to own a gun.  It’s hard to imagine how he would have held a licence with a string of breach of protection orders in the past year.  Questions that are all being asked now.

Personally I am very glad that it is not easy to obtain a gun in my country.  I won’t pretend to be anything other than anti-guns, although as I said already I recognise that my society and yours are quite different.  But I will always stand up for more control on gun ownership.  I have no desire to live in a world where owning a gun is necessary, or even desirable.

I was 15 years old when my ex-boyfriend J loaded a rifle, gave it to me and told me to kill him.  He didn’t want to live if I wouldn’t be his girlfriend.  He owned a gun (he was 18 at the time) for hunting but I strongly believed both then and now that he should not have access to one.  Why?  He was too impulsive.  I knew he could shoot himself, or me for that matter, without too much thought.  The thought would come later, when it was too late.  And that is the problem I have with guns.  Act now, think and get the facts later.

I can still remember thinking how easily it would be to pull the trigger.  By then J had been creating a lot of problem for me by stalking.  Fear thankfully got the better of me, aside from the fact that I’m not the sort of person who could fire a bullet at anything, anyone. Harming anything is difficult for me.  I just wouldn’t do it.  Instead I dropped the gun and fled, running about three miles home.  He followed me on his motorbike.  Who knows where the gun was by then.  I didn’t stop to ask.

In spite of the fact that I would have arrived home hot, sweaty and out of breath I didn’t tell anyone what had happened.  My family was all home, it was Saturday night, and no one knew a thing.  It was many years before I ever let that burden go by telling my family (when I wrote my book).  The trauma of that night was something I carried with me from then on.  I didn’t tell anyone because I thought it must be my fault.  What’s more I had been told I must show Christian compassion to J, and frankly that seemed so unfair.  It still seems unfair and totally wrong to me.  I hate the thought of people being guilted into this Christian compassion.

That night was over 30 years ago now and, in spite of a lot of therapy, I still carry it with me when I see things like the Dunedin shooting reported.

It’s too easy to pull a trigger.  From what that man had with him, he had apparently gone there to burn the house down.  Who knows whether the shootings were part of the deal.  Maybe it was simply too easy.  I don’t know, and I guess no one will ever know.

I don’t want to get into a gun lobby debate but when this story hit me I needed to say that while I hate that those children have died, and I hate that their mother is now alone, I am very glad that guns are not common in New Zealand.  Tragedies like this happen but not often.  Thankfully.  Frankly I wish it was harder still to get our hands on guns here.  I simply don’t believe there is a need, although I accept that maybe your country is different.

“I became what I am today at the age of twelve, on a frigid overcast day in the winter of 1975. I remember the precise moment, crouching behind a crumbling mud wall, peeking into the alley near the frozen creek. That was a long time ago, but it’s wrong what they say about the past, I’ve learned, about how you can bury it. Because the past claws its way out. Looking back now, I realize I have been peeking into that deserted alley for the last twenty-six years.” 

― Khaled Hosseini, The Kite Runner

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