“But He’s Such A Nice Man”

I’m quite sure that utterings of “But She’s Such A Nice Woman” get said at times, but for the life of me, I can’t think of an example in this context.  This past week though, my city of Christchurch, and probably half of New Zealand has come out in support of “such nice men“. They can do no wrong, it seems. “Nice men‘ apparently makes them ‘innocent men‘.

Enough to make me sick for the victims of those “such nice men“.  Those men, who are defended by the masses and often close-minded, sometimes have victims.  And to me, the uttering of “but he’s such a nice man” simply goes far enough to harm the victim all over again.

Shame on us for letting niceties get in the way of supporting victims.

What am I talking about?  Mainly sexual harassment, one of those types of harm that often goes unrecognised.  This past week, in Christchurch, sexual harassment has been top of the list of talk-back topics, social media comments, newspapers and anywhere anyone could get themselves heard.  Everyone, it seems, has had an opinion.  Too often it has been the opinion of the close-minded and ignorant.  The only opinion we haven’t heard is that of the victim, bound to silence by a confidentiality clause.

A man (Roger Sutton), whose name won’t mean a lot to most readers, was accused of sexual harassment by a woman in his office.  This complaint made the big time here because that office is CERA (Canterbury Earthquake Recovery Authority).  Again, a name that won’t mean much, but here in Christchurch where we are recovery  mode from the earthquakes of 2010 and 2011, CERA is perhaps the most important office in the city.  This man was its Chief Executive, and it seems that to many here, he was single-handedly making the recovery of the city happen.  And he was apparently ‘such a nice man’.  I never met him so I wouldn’t like to say although I admit he always seemed to come across well in media interviews.

The details don’t really matter.  What matters in this post is that the claim of sexual harassment was upheld, and there was a victim who wasn’t/wouldn’t/ couldn’t be heard.  She was not only anonymous but also bound by that confidentiality agreement.

The masses were crying such statements as:

“She’s just ugly!

She has no love in her life so has to wreck his life”

“But he’s such a nice man”  (heard repeatedly)

This all gets me angry because this woman who is now being torn to shreds, but remains anonymous and silent in terms of the agreement, is now not only a victim of Roger Sutton, but is also now a victim of the general public (not to mention the media who have also made the most of it).  She doesn’t need to be a victim twice.  What’s more is that too often we (the public) and the media make victims victims.  It’s just so wrong… regardless of how ‘nice‘ he is.

I admit that I possibly feel strongly about this because I too, have been the victim of sexual harassment.  And I too, also became a victim of the onlookers.  My experience was much less public, but for me the victimization of the onlookers actually hurt a whole lot more than the initial harassment.

My sexual harassment was not in the workplace, but rather in a church.  At the time I was a church-going Christian.  I grew up in the church (a minister’s kid) and to a large extent, I saw my church as something of an extended family (especially when most of my family had moved away).

To be sexually harassed by one of the male church leaders was very shocking and hurtful.  These people are supposed to be ones I could trust. I had naively thought that amongst church people I was safe.  Unfortunately that is so untrue.

Eventually I made a complaint to the church authorities.  Thankfully the head of the church, the minister, accepted my complaint.  He had received a similar complaint from another woman who had since left the church.  He and his wife would turn out to be my most supportive people.

The man who had abused me (and harassment is abuse in my mind)  was stripped of his leadership role.  As that became public, and the reasons behind the move were now known, the general public (of the church) quickly turned on me.  I was said to be “wrecking the man’s marriage“, “putting undue pressure on his wife“, and the familiar line came forth:

“But he’s such a nice man!”

He was a nice man, and everyone liked him.  Unfortunately no one wanted to believe what he had done, or was capable of.  I left the church soon after.  There was no space there for me as a victim of this man.  This church was no longer the safe ‘family‘ it had been.

The lesson I learnt since, over and over, is that nice people sometimes hurt people.  Nice people sometimes hurt, abuse and harass people.  I have gone on to learn that sometimes it’s is the nicest people who do the most harm to us.  That has certainly been my experience.  Sad but true.

What really worries me is how many victims have learnt the same lesson?  And what do they do?  It’s not just sexual harassment to which this applies.  It’s any type of harm.  How many victims choose to stay silent because of this?  How many perpetrators run free?

“To those who abuse: the sin is yours, the crime is yours, and the shame is yours. To those who protect the perpetrators: blaming the victims only masks the evil within, making you as guilty as those who abuse. Stand up for the innocent or go down with the rest.”

― Flora Jessop, Church of Lies

 

 

 

Lessons I Must Have Missed

Do you ever get the feeling that perhaps you missed some of life’s essential lessons?  Somehow you just weren’t there for that lesson, or maybe you had something distracting you, so you just weren’t paying attention?  I’m not talking about school lessons but rather lessons in the things we needed to know to be able to function adequately as a human being.  Lessons in things that would substantially help us get through life.

I’m coming to the conclusion that I very definitely missed some lessons which could have made life a whole heap easier and maybe even less traumatic for both myself and those close to me.  The missing lessons for me centre around emotions.  I seriously don’t think I ever learnt anything useful until I was very sick and depending on a very good therapist to get me through.  It’s more than a little sad really, and it goes along way to perhaps explaining where my relationship with Borderline Personality Disorder (BPD) came from.

BPD is a hard disorder to get your head around simply because there are so many variations. We are certainly not all the same, as many websites suggest.   There are usually many things going wrong to warrant a diagnosis, but in my mind it all centres around emotions and the ability to express and manage those emotions.

So here are a few of the lessons that I may have missed, and which may have contributed to the existence of BPD in my life.  They may seem a little disjointed, but bear with me.  There is very definitely a pattern.

Lesson Missed #1
It’s okay to feel hurt

Remember that awful little rhyme that has wrecked havoc on the minds of so many girls with curly hair?

There was a little girl
Who had a little curl
Right in the middle of her forehead
When she was good, she was very, very good.
But when she was bad she was horrid.

Who quotes that at their daughters?  Who tells their little daughter that they are horrid?  It’s horrid that anyone should even write such a rhyme let alone quote it at small girls.  And yes, it was quoted at me.  Apparently it was written for me.  My guess is that I was around four or five.

It’s difficult to remember an emotion back that long ago but my guess is that there was no expressed emotion.  I just knew that I was bad. It was a fact, indisputable by the presence of that word ‘horrid’ being applied to me by people I loved and trusted.  Did they think it was funny?  There is nothing funny in name-calling.

If I was that five-year old again, I hope that I would feel hurt, even betrayed.  It seems only appropriate, but then appropriate emotions were something I didn’t know about for a long way to come.

Lesson Missed #2
It’s okay to feel angry

By the time I got to around 15 I was struggling for a number of reasons. Not that anyone outside my immediate family would have known.  To the outside world I was a good teen who seemed to be doing all the right things.  I turned up at school (and anywhere else I was supposed to be), I passed my grades, I had friends, there was nothing I was doing wrong.  But my family knew differently.

I was a bomb waiting to explode but I had little idea of what was going on.  I guess now that I was mostly angry and frustrated but I had no idea how to express that.  I didn’t even recognise what that meant.  I would simply explode and physically lash out.  That was the only means I knew of getting what was inside out.  It would literally be an exploding bomb with no words.  No words because I didn’t have a clue how to attach words to what I was feeling.

Eventually I didn’t trust myself.  I didn’t understand what was happening, so why would I?  Being unable to temper that lashing out I made some big decisions at that point which have significantly impacted the rest of my life.  I was simply doing the only thing I knew how.  I was holding myself in.  Protecting myself, and more importantly, others.  Too scared to express anything.   Only my family know who bore the brunt of that, aside from me.

Lesson Missed #3
Feelings are NOT thoughts

Fast forward to 30.  I’m in residential treatment for a variety of mental illnesses (although not BPD).  Sitting in my therapist’s office, he has asked me how I felt about something that had happened in my life.  I tell him what I think about it.  He asks me again, and this time points out to me that how I feel about something is quite different to what I am thinking about it.

Bingo!  It might seem obvious to you, but at 30 I had no idea.  I was so shut off to my feelings that I didn’t even know they existed.  I literally thought ‘feelings‘ was another word for ‘thoughts‘.  I am an intelligent person.  But I simply hadn’t had that lesson.

That was a very big day of learning.  Life didn’t get easier because now that I was feeling, I felt every one of those emotions eventually.  It hurt like hell, but at least I was on the right road.  There was some hope.

There were more lessons to come.  I was completely closed off to experiencing what I felt.  It seems I had been right from childhood.  Why?

There are lots of possible answers to that ‘why?‘  I’m not going to get into blaming anyone, including myself.  Right now that just wouldn’t be of any help to me or anyone else.  It just was.  What I can do with having worked through this is to understand better where the BPD diagnosis eventually came from, and continue to work from there toward recovery of some sort.  I think too, that some of the other attributes of BPD which I also have perhaps came about as a means to coping.  If I went into that now, this post would become book length.  But maybe it’s time to explore those in future posts.

“Your perspective on life comes from the cage
you were held captive in.”

— Shannon L. Alder

 

An Apple Never Falls Far From The Tree

Image credit: Wikipedia.com

Caution: This post contains a (small) mention of self harm and eating disorders.  Read at your discretion.

Today my family are gathering together.  No special reason, except that it is a rare opportunity when we are all in the same place at the same time.  My memory is a little hazy but I’m guessing that it is about 18 months since we have been altogether.  Of course, one important person will be missing.  My father who died over three years ago is a very big absence in the room.  Perhaps especially because Dad was always my reason for being part of the family.  Now I feel a little lost without him there.

Family gatherings are something I find hard.  I have fallen near the tree yet I struggle to find a place for myself amongst that basket of apples.  I don’t fit.  Perhaps I should say I don’t feel I fit.  Actually I have never felt I belonged there.  I guess, that I have felt an outsider in so much of life, and the family context is just one more.

In the past I have tried very hard to get my family to reject me.  I grew up with this notion of unconditional love, which I didn’t believe really existed and also didn’t really understand.  I spent years doing and being something that I expected my family would reject.  I would prove that this unconditional love thing was a hoax.  To my surprise, they didn’t reject me.  Perhaps they didn’t like what I did always, but they never rejected me.  I admit I was surprised.  I was sure I could prove them out, but I never did.  For some reason, largely beyond my understanding, they kept on loving me.

I’m not at all sure that they necessarily like me, or actually ever liked me, but that is a different thing than love.

I don’t fit.  I’m not sure that I fit anywhere in this planet (except maybe surrounded by another family of stuffed animals) and so when I am in a group (whether it is my family or any other) I feel out of place.

While my siblings were creating marriages and families (very lovable families at that), I was creating a canvas across my body of places I had dragged the razor blade, not to mention destroying my own marriage.

When they were building careers, I was focussed on starving myself  and plans for death.

When they were building lives, I was gradually destroying mine.

Admittedly I am not in that destruction phase now, but I know it still hovers not far from the distance.  That’s just what chronic mental illness does.

When their children are growing up (fast), I am by choice, alone.  I don’t know how to be anything else, nor do I think I want to.

My life has turned out (so far) very different from my family.  Practically, I have no idea what to talk about with them.  My interests, let alone my goals are so very different.  But more than that, I just feel like I have no right to belong.  My achievement for life is to still be living today, and while that is big for me, I know it is not easily comprehended by others.  Nor is it something to talk about around the dinner table while the children play.  It’s a conversation stopper rather than anything else.  I just don’t know how to fit into the conversation in the room.

I’m more comfortable outside with my good canine friend Duncan.  He will no doubt be locked in his kennel today, to protect unfamiliar children and Grandma who risks being knocked over in his exuberance and friendliness.  Frankly I would almost be happier out in the kennel with Duncan.  He’s not worried about social niceties, careers and school reports.  He’s not worried about having conversation.

But it’s not like that, is it?  I can’t hang out in the kennel, and to be honest sometimes Duncan’s kennel needs some ‘housekeeping‘.

It’s another time when I have to be with the people, yet I feel so out of place.

My family are good people and I know they love me.  I want, and need them in my life.  I’m still not convinced that it’s unconditional love but I’ve stopped trying to prove that.  I’m not sure that humans are capable of unconditional love, but maybe that’s another topic.

I know my family have suffered in a different way, during the years of my destruction.  But they seem to have little understanding of my life of chronic illness, both mental and physical.  We are two types of apples, from the one tree.  I want to be with my family today, but yet again I have no idea of how to be with them.  Somehow Duncan is so much easier.

“The boughs, without becoming detached from the trunk grow away from it.” 

― Victor Hugo, Les Misérables

Claiming My Voice Back

I haven’t shared this journey on this blog, mostly because until now I didn’t think it was my story to tell.  I posted Grieving For My Red Balloon about a year ago, but that is as far as I went.  It was a very carefully constructed attempt to say “help, I’m hurting” while strangely enough trying to avoid stepping on anyone’s toes.  Was I kidding?  Avoiding trampled toes?  It was far too late for that. But then I was still being manipulated… into silence.  That was all part of the game.

I’m healing now and part of that includes claiming this as my story.  It doesn’t belong to anyone else because I’m the one who lived it.  I’m the one who was played with like a toy.  I was a game. Manipulated, abused, lied to and cheated on.  It’s my story and I’m choosing finally to share it with you because I can.

“You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.”

 ― Anne Lamott,Bird by Bird: Some Instructions on Writing and Life

I’ve been kissed by a…

Rose

Monster

Person With A Mental Illness

Take your pick.  You could say that I have been kissed by all three. I could go with the words of the song.  If a man can be a rose (and why not?), then that is exactly how he seemed.  He was a beautiful person with a very loving heart.  Caring, understanding of me and my world, he promised he would never play games with my heart.  He challenged my thinking and he supported my growth as a person.  He wasn’t perfect, like any of us but he was a person right for me.

But later I’d know that I’d met a ‘monster‘.  His term, not mine.  Personally I don’t like calling human beings monsters, regardless of what they might or might not have done. But I’m using the term here simply because he used the term of himself.  I regularly told him that to me he was no monster.  Actually he still isn’t (in my mind).

Eventually, what I only knew is that I had kissed a person with a mental illness.  For that matter, so had he.  No harm in that.  Is there?

Here’s the story,

Back in 2012 Blogger (boy) meets Blogger (girl) in comments section of a Third Blogger’s Post.

(BTW Third Blogger has no responsibility for anything here, except for yet another very thought-provoking post or two.)

Each blogger liked the other’s comments and so a friendship developed, followed quickly by a romance.  I should add here that we were many miles apart, me in New Zealand and him on the other side of the world.  Neither of us were looking for any kind of relationship, let alone one on the internet.  Surprise!

We lived happily ever after…

Hang on a minute.  That’s how it seemed.  We were both very happy and eventually we spent some time together ( I went to visit him) and after that we were planning on a life together.  And this wasn’t an impulsive thing, it was all carefully considered.

It was what we both wanted. I was his ‘soulmate‘.  That’s what he said, regularly.  I’ve never been too sure on the whole ‘soulmate‘ terminology but if there was such a thing, then this was him.  He was the ‘one‘ for me.  I was never more sure of anything.  My gut instinct told me that this was right.

Then one day he announced to me via the internet waves that we treasured so greatly, that he was “too sick to be in a relationship“.  Time out was what he wanted.  My compassionate heart sprung into action and understood completely.  I thought it was a break (that’s what he said) and that we still had a very bright future ahead of us (together!).  Yes, it would hurt but it seemed like the best thing for a apparently very depressed man.

Just days later though, he announced to his Facebook friends (including me at that point) that he had a new ‘soulmate‘.  He was in love with another woman (any mention of me was completely gone).  And they were very happy together.  To add to it, she was married.  That didn’t seem to be an issue though.  Two relationships gone with one hit.

The short version of the rest of the  nightmare is that as well as cheating on me, he had lied.  Actually he had lied the whole way through the year long relationship.  Everything was a lie. He had manipulated me for his own deceitful purposes.  He had abused me in more ways than I care to count.

I discovered that his diagnosed mental illness was not Borderline Personality Disorder (BPD) as he had always said, but was Antisocial Personality Disorder (that’s right… sociopath/psychopath).

It all hurt like hell.  I felt deranged and paranoid.  I no longer knew what the truth was.  I didn’t know what to believe.  Just how he wanted it.  Perhaps worst at that time was that I couldn’t go bang on his door to find out what the heck was happening. I eventually learnt many things.  Others I simply pieced together.  And yet others, I will simply never know.  One of those big revelations was the reason why he would never have visited me in New Zealand.  It boiled down simply to the fact that he is a convicted criminal and wouldn’t have been allowed into my country. He had never admitted that.

So that’s the very brief story of the last two years of my life.  I fell in love with a man who simply didn’t exist.  Oh sure, there was a man, complete with body, but aside from the body, everything was fake.  Everything he said to me was simply a story, all part of the game he was playing.  The extent his lies would go to was simply limited by his acting abilities. And even before anything went wrong, I knew he would make an excellent actor.

Of course all this hurt.  I cried and screamed and yelled and felt so empty, used and abused.  Now days I’m moving on, but it hasn’t been easy.  It was far from easy and very traumatic.  I’m still working on recovering, but I refuse to be held back by this anymore. When I think about all that I have been through the fact of loving someone who really didn’t exist is perhaps the hardest.  I had no desire for the true person revealed.  That person I felt angry towards and then sad for.  Incapable of a real relationship. But I still loved the person I thought I knew.  How do you grieve for someone who wasn’t ever there?

Yeah, I guess I was kissed by a monster (his words, not mine).

Does it seem a little strange that I’m sharing this now, particularly when I’ve said so little in the last year?  I have realised that by staying silent, I am allowing myself to be manipulated further. I need to speak up to claim back control on my life. I have only shared the barest detail. There has been so much more, but that detail is not important.  I am simply saying this is my story to tell to whom I chose. It’s not done in malice but rather in claiming back my voice and with it some peace for myself.

“Just like there’s always time for pain, there’s always time for healing.” 

― Jennifer Brown, Hate List

How to… Forgive

Forgiveness is one of those things that I have struggled with all my life.  I’m still struggling with it, but I sense that finally I am making some progress.

As a Preacher’s Kid it is understandable that the things I learnt about in my growing up years, were always flavoured with Christianity.  I don’t have a problem with that, although I admit it helped trip me up a few times in my attempt to understand this difficult issue.  Just about everything I learnt growing up was flavoured with Christianity, so why should this be any different?

What I remember most was the ‘forgive and forget‘ line.  So I’m supposed to say that what s/he did to me is okay and then I had to forget it?  Yeah right! (a popular Kiwi expression best consumed with a bottle of beer)  That never made any sense from being subjected of minor bullying in the playground to much greater hurts as I grew older.  I just came the conclusion many times that I simply wasn’t a good Christian.  Actually that was a common conclusion for me on so many issues.

As I grew older, the issue of forgiveness became more problematic, not simply because the hurts grew larger and had a much greater impact on my life, but because my belief that it was my fault I couldn’t work out the forgiveness thing became even greater.

Perhaps the biggest thing I learnt wrong was that giving forgiveness was about saying what the person had done to me was okay.  Because it very much wasn’t okay.

Unfortunately (because it meant a whole lot of hurt happened, most of which I have been unable to mention here) this past year has seen the issue of forgiveness become critical in my life.  By now I had read enough on the topic to know that if I couldn’t forgive the person who caused the hurt, then it would eventually destroy me.  That’s not just something I read in a book, but rather something I realised for a fact as I reacted to the hurt inflicted.  It was destroying me.  The hurt was so bad that if I couldn’t move on from it, then it was me who would be destroyed.  I’m still working on the process, but forgiving the person eventually became something that simply made sense. And it separated me from the hurt.

It wasn’t okay what had been done to me, and it never would be.  I am very unlikely to forget what was done, and actually that’s a good thing because it will hopefully help me avoid similar hurts in the future.  The issue I’m still struggling with is that of forgiving myself, but then that is a whole other post.

Meanwhile yesterday I read a wonderful post by Scott Williams, a Clinical Therapist in the United States.  I thought about reblogging it but I don’t usually do that.  I know many people (including me often) don’t read reblogged posts.  But this is really worth reading, so go check it out:

Forgive and Forget
http://scott-williams.ca/2014/06/05/forgive-and-forget/

I should add that I’ve tried the boredom technique he suggests.  It’s very long and very slow…  but eventually I got there with the help of a very good therapist.  The therapist was gracious enough to never mention how long it took.  It must have been painfully slow for him.

In spite of all I’ve learnt, the second sentence of this quote is simply the best:

“Forgiveness is not about forgetting. It is about letting go of another person’s throat……Forgiveness does not create a relationship. Unless people speak the truth about what they have done and change their mind and behavior, a relationship of trust is not possible. When you forgive someone you certainly release them from judgment, but without true change, no real relationship can be established………Forgiveness in no way requires that you trust the one you forgive. But should they finally confess and repent, you will discover a miracle in your own heart that allows you to reach out and begin to build between you a bridge of reconciliation………Forgiveness does not excuse anything………You may have to declare your forgiveness a hundred times the first day and the second day, but the third day will be less and each day after, until one day you will realize that you have forgiven completely.” 

― Wm. Paul Young, The Shack: Where Tragedy Confronts Eternity

Time To Call In The Troops (aka I Can ‘Do’ Tough!)

These troops are on their way from Space as you read. http://upload.wikimedia.org/wikipedia/commons/3/3e/Teddies_in_Space.jpg By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

These troops are on their way from Space as you read.
By Cambridge University Spaceflight (University of Cambridge Department of Engineering) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)%5D, via Wikimedia Commons

Whether you have a chronic physical illness, a mental illness, or whether you’re just ploughing through life keeping one foot in front of the other, and your head above water… sometimes it’s time to realise that just perhaps… it’s time to call in the troops.

Sometimes I’m a little slow to realise that the time has come.  Sometimes I think I can just keep plodding on by myself and “I’ll be okay“.  Sometimes I’m standing, gazing at the sky, wondering just when the troops are going to arrive.  It doesn’t matter that I haven’t called them, I just assume that somehow, magically, they will know I need them and come running (or flying in the case of the image above).

Other times I get a whack in the side of head and realise that unless I ask, it just won’t happen.

And vague mentions of stress are not enough.  When I finally work that one out and actually specify to someone who can help that I need their help… then I’m finally getting somewhere.

That whack in the side of the head (not literal) came yesterday and today, I asked for help.  I called in the troops.

Just in case you haven’t got it yet, that is a major accomplishment for me.

Yesterday I walked away from a situation in tears, out of sadness for a person I love, and an inability to know how to make a positive difference in that person’s life.  I wasn’t even sure it was possible, but meanwhile I felt helpless and frustrated.  Aside from the other person’s needs, I could feel my own stress levels had skyrocketed again.  Again, because I was going through the same helplessness and frustration day in, day out.  And it wasn’t getting any better.  If anything it was getting worse.  What’s more it was something I simply couldn’t run away from (although you can bet I considered it).

I realised that I could sit, feeling helpless and frustrated, hoping that someone would come along one day and help me… but I knew (finally) what wouldn’t happen.  The help wouldn’t come (certainly not magically) and I would simply get sicker, both mentally and physically, as my stress levels continued to rise.  I finally realised that I had to find a way of getting help for myself before I become helpless, not to mention hopeless.  I know myself well enough to know that I walk a very fine line.  It doesn’t take much to tip the balance and end up in despair, depression and hopelessness.

So with all this wise thinking on board, today I went out to ask for help.  It turned out not to be quite the help I was hoping for.  It seemed that bureaucracy got in the way.  Doesn’t it always?  But almost miraculously (maybe that’s going over the top) I got enough help to change my mindset, and actually that’s what I think is the exciting part of all this.

Somehow literally walking down the street and into an office to ask for help, lifted the feeling of helplessness and hopelessness.  Even though the person I spoke to saw me for maybe five minutes at the most, I realised I wasn’t helpless.  Actually I have a hard task ahead of me.  One I would rather not have.  But I’ve got it and today I’ve been able to suck it up and really accept this role.  I’m not helpless and the situation is not without hope (although definitely pretty bleak).  It’s just tough.  But I can ‘do‘ tough.

No one said this to me.  I just got the message myself.  Sometimes weird things happen that way and we find our own strength to do what’s needed.  Somehow by going out to look for help from another source, even though I didn’t get exactly what I was looking for, I did get what I need.  I really hope that’s not too confusing.

Today’s quote might seem like it’s not really relevant, but actually it is totally relevant to my situation and my effort today to take back some control in my life.  If it only means something to me, then that’s okay.  Perhaps the relevance is contained in the parts I couldn’t share.  My apologies.

“The death of democracy is not likely to be an assassination from ambush.  It will be a slow extinction from apathy, indifference, and undernourishment.”

 – Robert Hutchins

 

Whatever Happened To Lucy?

Remember my post Lucy In The Sound Dome With Diamonds from just over a month ago?  Lucy (that’s me!) was waiting to see a specialist after being told she probably had a tumour being played out in music hallucinations.  Yes, that’s right, a tumour on either my ear drum or my brain.  I had a whole list of other symptoms which I had no idea whether or not they were connected.  Thanks to one of my brothers I finally found a way to be seen by a specialist.  This specialist was an Otolaryngologist (I can’t even say that, let alone spell it!), which means a Head and Neck Surgeon, including the better known Ear, Nose and Throat.

I admit that the night before my appointment I was perusing websites selling hats.  I had, by the time I had nearly three months of hallucinations, convinced myself that I was going to need surgery and what’s more I was going to lose my hair.  All of my hair.

The good news is I’m not losing my hair, but I have decided that hats would be a good look for winter (fast approaching) anyway.

Instead of answering the question I desperately wanted to know, the specialist started off on what I thought were the minor but annoying symptoms – dizziness, nausea, loss of balance not to mention more dizziness again.  I could hardly stand up straight.  By looking at my eyes (it’s a while since anyone has been looking into my eyes!  He had to stand on his tip toes to do so.) while dizziness was induced, he could apparently tell that something was going on with my ears that usually happens after brain injury.  No brain injury here and he couldn’t tell why it had happened to me.  He simply manipulated my head in all sorts of strange directions and sent me into a spin like no spin has ever been.  I admit I swore…  the room was spinning so fast.  He ignored my colourful language and insisted that I keep my head where he’d left it for another 20 seconds.  Easy for him to say.  …and apparently it was fixed, as long as I slept half sitting up for a couple of nights.

But onto the important stuff.  The supposed tumour.  He had an old MRI from a few years ago which apparently told him I was tumour free. It’s still beyond me how an old MRI can tell him how I am now, but the fact that I didn’t have to fork out for another MRI was good.  And he gave every impression of knowing what he was talking about.   He seemed to be one of those doctors who are very knowledgeable but a lacked a little in terms of sharing that knowledge with the patient.  Actually he appeared to be getting tired of my questions, but for the money I was paying why shouldn’t I ask a question or six?

That’s the good news anyway, and don’t get me wrong I am very happy to be tumour free.

But the bad news now.  It may seem like there could be no bad news. After all, tumour-free is fantastic.  But I still needed an answer as to what was causing the music blaring in my ears most hours of the day.  It might not sound that bad to you, but it is like a form of torture and my biggest fear was that I would be told I just had to live with it… forever.

The music hallucinations are apparently being caused as a side effect of the pain medication I use for Fibromyalgia.  It has taken two years to find a medication I could use (in this case, Codeine), and now I can’t use it.  What’s more he was quick to add that the only other pain medication I had been able to use (Tramadol) is also likely to cause the same side effect.  In other words, I can’t use either.

Understandably the specialist wasn’t an expert on pain and so has sent me back to my usual doctor to work out what I do now, but it looks very much like I am back to only being able to use over-the-counter medication,  which does nothing.  Lucy is not happy.

Do I want pain?  Or music?  That might seem easy, but I don’t want either.  Maybe I’m expecting too much.

At least I don’t have a tumour.  At least I am not going to lose my hair.  But nor am I going to lose the pain or the music.

But hey, I bought a couple of hats!

“He took his pain and turned it into something beautiful. Into something that people connect to. And that’s what good music does. It speaks to you. It changes you.” 

― Hannah Harrington, Saving June

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Shifting The Goal Posts Is Okay

 

Recently I have seen a  number of statements and general topics on social media formats which show what I see as a resignation by sufferers of mental illnesses to a belief that the point at which they are now is where they’re going to be for life.  Examples of statements include:

“It’s beyond happiness now, I just have to exist”

“Getting better is no longer an option”

“I will be depressed for the rest of my life.”

 

I am the first to say that I have been at that point myself.  Ten years ago I simply believed that happiness was not an option for me, and that yes, how my life was then would be how it always would be.

Nothing took away any sense of hope more than these statements.  Actually there was no hope (in my mind) , and I was simply existing.  If I had read a post like this at all, I would have said “it’s easy for you to say” and probably “you just don’t understand my reality“.

But I honestly believe that it doesn’t have to be this way.  Instead, this is what I believe:

“At any given moment, you have the power to say that this is NOT how the story is going to END”

― M.H.S. Pourri

 Frankly I have as much reason as anyone else to close the book, shut up shop and say “this is how it’s going to be“.  I have two decades of diagnosed mental illnesses.  I have been told repeatedly by doctors, who were ready to give up, that this is just how it’s going to be for me.  I know what it feels like to have no hope.  My family knows too how it is to have no hope for me.

25 years ago I was healthy, relatively happy and quickly climbing my way to the top of the corporate ladder.  My goal was to be Chief Executive.  It’s almost funny to think of that now, because that corporate world I was a part of (and loved) seems so foreign to what my life became just a few years later.  One unexpected bout of ill-health, followed by post-viral depression, and my life just spiralled down from there.

I know now that I’m never going to achieve that career goal.  Actually it’s not what I want anymore either.  But I’m not prepared to settle for nothing.  I don’t want to accept that there is no cure, so that my life will be as it is forever.  And I strongly believe that if I accepted that fate, then I would simply be fulfilling a very bleak prophecy.

Credit: Wikipedia.com

Credit: Wikipedia.com

As you may know, I am a Kiwi.  We New Zealanders take a fair bit of pride in thinking we know more about our national sport, rugby, than we actually do.  I admit from the outset that I’m not a rugby fan (there are a couple of us in the country!) but I know enough to know that sometimes it’s okay to shift the goal posts.

One end of a rugby pitch to the other is a long way, especially if you’re being chased by the entire opposing team.  Just watching them, I know it’s a fair workout from one goal post to the other.  I think it’s 100 metres.

Now think about rugby for school children.  We know that full distance is too far, and so young children play ruby across the field (70 metres).  It just makes sense and it’s realistic.  It’s something they can work at to achieve.

Do you need another example?  Try wheelchair rugby.  It’s one of the toughest team sports I’ve seen.  They play on a basketball court.

It’s the same when you’re learning to swim.  I remember my big goal was to be able to swim the whole length of the pool.  But that was unrealistic for this six year old, and so my first aim was to swim across the width of the pool.  And I was so proud when I did.

I can look back at my life 25 years ago and think I’ll never get to my goal and so I may as well stop right here.  Or I can shift my goal posts and work at something that is achievable, in spite of both my chronic mental and physical illnesses.  That has to be better than sitting feeling feeling I’m doomed… and getting more depressed by the minute.

I know that it’s hard to see beyond mental illness, especially those illnesses that are technically with us for life.  I’ve been pretty sick (thanks fibro!) over the past few weeks and yes, I would find it easy to give up and accept an invalid life.

But I don’t want to.  I don’t know exactly what is ahead of me, or even what is possible, but I have hope for better than I’ve got now.  It’s why I use the blog title I do. Infinite Sadness… or hope? is my expression of choosing  hope over what I have lived with through illness.

I don’t know what ‘getting better‘ looks like.  I don’t know what it is going to involve to get there.  I know that my ‘being better‘ won’t look like the life I had 25 years ago.  That’s just not possible now.  There are so many unknowns and obstacles right now, that it would be so easy to settle for never ‘getting better‘.  While it wouldn’t be comfortable, it would be the easy option.  But I simply can not accept that.  I have to hope that it will be better.

One last thing.  Mental Health Awareness Month begins today (on NZ time zone anyway).  Wouldn’t it be great to have it focussed on hope?  Mental Illness is a terrible thing but I believe that no matter what diagnosis we have, there is hope for all of us.

I strongly believe that this following statement applies as much to the mind as to the heart.

If your heart is broken, make art with the pieces.


― Shane Koyczan (2013)

 

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