Invisiblity

I started this post a while back now and like many things at the moment, I just never finished. The good thing about that is that it has given me time to think and reflect. What’s really going on here?

I have got the distinct feeling that I am invisible.  I could have got a role in Harry Potter or similar, because somehow it seems that while I think I’m there in reality, I’m not there at all.  I am invisible to all those around me.

A visit to my doctor (my GP) was the start of all this a couple of weeks ago.  He was seemingly uninterested in my reality.  While I talked of having trouble getting to sleep because of pain, all he was interested in was that I was apparently using too many sleeping medications.  I wondered why he couldn’t take interest in my pain.  I wanted him to ask about the type of pain I was experiencing, and how bad it was for me.  In over a year of having a chronic pain condition he hasn’t once asked me to describe my pain.  That seems odd to me.  Maybe he could suggest some ways of managing it.  But as usual, there was no apparent interest.  I guess his bigger interest was getting me out of his office so he could move onto the next person.  So I left, invisible…

My mother has been in hospital over the past couple of weeks, and somehow I have turned into her next of kin.  The night of her operation the hospital staff rang me to ask if I would come into her during the night if she continued to be confused (a side effects of her anaesthetic).  I felt I had little option but to say yes.

Actually I find going out at night difficult.  I guess you could say I am a little ‘scared’ of the dark, so the idea of driving across town in the middle of the night was daunting.  It also meant that I would have to go without my night-time medication, because I would never to drive.  That was all okay except that no one was actually interested in how I felt, and how I would cope if I had to do this.  Invisible again, this time in favour of my mother’s needs and the hospital’s needs.

As the week went on, there were more and more demands on me.  And that’s okay, because my mother was not well and needed my support.  I guess it just felt like it would be nice if my needs mattered somehow, somewhere.  Instead I was just a daughter, serving a purpose.

At the same time as this, I have been reading a very good book about Borderline Personality Disorder (BPD) called The Buddha and the Borderline by Kiera Van Gelder.  One of the things I have picked up in reading this book is the Borderline’s tendency to all too easily feel abandoned.  The lack of a stable sense of self see us take all these things as a kind of rejection of us.

When those I am in relationship with have other priorities, or simply can not be there when I need them, I think that I have lost that relationship.  They have abandoned me.  And so when I am not the priority in my mother’s care, I also feel like no one cares about my needs.

I can choose to go down the track of believing that I am invisible and that no one is there for me.  I can choose to believe that the relationship is gone, simply because I can’t always come first.

Or, I can recognise this as Borderline thinking.  I can tell myself it’s not necessary to think my world has ended because I feel invisible.  Even as I write this I can see that is an extremist view, as well as one that will destroy me if I let it.

I am not invisible.  Sometimes I might need to remember my own needs so that they don’t get lost in other’s needs, but it doesn’t mean that my needs are not important.

If that sounds easy, it’s not.  Especially for a Borderline.  We are constantly trying to hold onto a shaky sense of self, and we have to work hard to see ourselves, rather than believe we are invisible.  Even if others don’t have the ability to give my needs priority, I can work on doing that for myself.

It doesn’t mean I get walked on, or ignored.  It’s just that I recognise that it’s okay for me to put my needs first, even if other’s don’t, or can’t.  A Borderline is likely to tell you that they can’t do that, but I am one who is determined to find a way.  I’m not going to give into my Borderline insecurities.  It might be the natural response for me, but it doesn’t have to be the way.

I remember in psychology lectures at University, object permanence was discussed.  At a certain stage of human development we learn that even though we can’t see something, doesn’t mean it no longer exists.  It’s something that I need to remember in my relationships with others.

Even if they can’t, or won’t be there for me, doesn’t mean they don’t still love me, or care for my needs.  Maybe just for now, I need to take care of my own needs.

♦

“When you stop expecting people to be perfect, you can like them for who they are.” 

―    Donald Miller,    A Million Miles in a Thousand Years: What
I Learned While Editing My Life

Definition of Stupid

Believing everything you read on Social Media is true.

Social media is not Academia, and so everything that is said, is not backed up by 20+ references to prove it is fact.  It is simply a reflection of what someone wants to say.  And yes, even what I write here should not be taken as fact.  Is the above definition really the definition of stupid?  If you take the time to check it out in a Dictionary, for example, you will know that in fact this isn’t the definition of stupid.

It’s my definition of stupid for today, simply because it is something weighing heavily on my heart today.  It doesn’t make it true, and if you choose to believe that it must be true because I said it, then (I’m sorry but) you are stupid.

According to a more worthy source of factual information than me, The Oxford Dictionary, stupid is defined as:

lacking intelligence or common sense (1.)

Or if you don’t want to take such an academic approach, The Urban Dictionary, which for all it’s downfalls makes some valid points, defines stupid as:

Someone who has to look up “stupid” in the dictionary because they don’t know what it means. (2.)

The problem with stupid (and I’m thinking of this in terms of social media) is that stupid takes what it reads on social media, believes it to be true, and then makes judgements about people on that basis of that which is probably not true.

I’ve written about the tendency to judge people before, so I don’t want to repeat myself.  Personally I don’t believe I have the right to judge other people.  It’s simply not my job as a fellow human.  I am just as flawed as the next person, and therefore have no right to stand in judgement.

Of course you may not feel that way, and I have no right to expect you to think as I do, but if you’re going to judge a person, at least check your facts.  What is said on Facebook, Twitter or even on WordPress is not necessarily true.  It maybe completely fabricated, and by your choice to blindly believe what you read, you run the risk of creating a whole lot of hurt.

Image credit: FB- Peeling Away The Layers

If we want to stand in judgement of other people, let’s at least make sure we have our facts right.  Let’s at least make sure we’ve given the person we’re judging the opportunity to speak and that we’ve heard all of the story.

When we don’t, the risk of losing what is so important to us is much greater than we stupidly think.

“Evil isn’t the real threat to the world. Stupid is just as destructive as Evil, maybe more so, and it’s a hell of a lot more common. What we really need is a crusade against Stupid. That might actually make a difference.” 

―    Jim Butcher,    Vignette

Related articles

• When Do You Lose Your Right To Be Treated Humanely (infinitesadnessorhope.wordpress.com)
• Let The One Who Has Never Fallen (infinitesadnessorhope.wordpress.com)
• I Need A ‘Dislike’ Button (infinitesadnessorhope.wordpress.com)

…And She Flew

Image credit: whakaangi.co.nz
.

Remember the kiwi? It’s not a piece of fruit (that’s a kiwifruit) but a small, flightless bird. Our national icon here in New Zealand, s/he lives in the undergrowth of the New Zealand bush doing all s/he can to avoid predators. S/he is an endangered species, and that must be hard when you’re a bird… and you can’t fly. What’s more, as someone pointed out to me recently, s/he also can’t swim. Actually it’s amazing s/he has survived, against the odds, for so long.

According to the Department of Conservation, who work to protect this, and other natural treasures here in New Zealand, there are only about 72,000 of these birds left.  Actually that’s not many, and you won’t see them easily when you come here as they are also nocturnal birds.

Even if you’re not from New Zealand, it’s hard not to be taken with the kiwi.  A bird that can not fly, that hangs out in the dark, and apart from an impressive looking beak, does not have much with which to defend itself.

The kiwi (bird) is where some 4.5 million New Zealanders take their name.  We are also known as kiwis, and personally I’m honoured to be represented by such a bird who faces the odds, time and time again.  That kiwi (the bird) can not fly… but this kiwi (me) is going to fly.

♦

“Come to the edge”, he said.  We are afraid. 

“Come to the edge”, he said. 

They came.  He pushed them, And they flew…”

   – Guillaume Apollinaire    

♦

My favourite quote (above) reminds me that sometimes, even when we are scared, we need to fly.  We have to take a (hopefully somewhat measured) risk and leap into the unknown.  And there we fly…

In five weeks, I am going to get on a plane (actually several) and fly half way around the planet to be with someone I love.  Standing on the edge, there are risks, but I’ve measured them and believe they are worth it.  Aside from the risk of flying half way around the planet to be with someone I haven’t met in person before, I also have to face 31 hours of travelling time.  Yes, that’s right.  31 hours.  That includes stops in Sydney, Bangkok and Dubai before I get to my destination in England.  And that is the shortest possible trip I could afford.

31 hours of sitting on planes, and passing time in airports is not exactly many people’s idea of fun.  The most I have ever done is 15 hours and that was hard enough.  Now I am doubling that, and have to factor into the equation my fibromyalgia.

Anyone with fibro, or probably any type of chronic pain, will be wincing at the idea of this.  It is a huge undertaking when sitting for any extended length of time will see my body seize but, and walking through airports and waiting in lines will see the fatigue set in.  This is not going to be easy, or even pleasant.  But that has been part of the weighing up the risks for me.  I expect by the time I get to England I will be half dead, but it’s worth it.  I have no doubt of that.

I have done my homework on what I should expect of my body but  I admit I haven’t yet considered too closely what my brain function might be like by the end of this.  Will I be able to think straight?  Unlikely but Frank knows to expect a wreck off the plane.  If anything can test our commitment to each other it will be the state of me after that 31 hours.  While it would be nice to think I’ll be looking my best, I know I won’t be.  That’s just how it is.  Sometimes that’s life.

The difficulty with fibro is that I really can’t accurately predict how I will be.  I know sitting immobile is a factor, as is the difficulty of sleeping over that time.  I would love to have one of those seats where you can lie down properly to sleep, but they were way too expensive.  I also know walking long walkways in airports might be difficult.  But I might handle it all really well.  Let’s hope.

Meantime I did some reading.  7 Keys to Savvy Traveling with Fibromyalgia by Tami Stackelhouse, a Fibromyalgia Health Coach provided some interesting food for thought.  Some of it I admit I struggled with though.

One of the first ideas suggested was to use wheelchair assistance in airports.  Hmm.  It might be a good idea, because usually there is a lot of walking in airports, but I’m not ready to face a wheelchair just yet.  I’m struggling enough with hope right now (see Fatigued Hope), without going that far.  Maybe that’s pride, maybe it’s stupidity, and maybe it’s maintaining some sense of self-empowerment.  I think  I need that right now.

What I need from my blogging friends is to hear what works for you.  Have you travelled long distance with fibro?  What did you do to make this as easy, and preferable pain-free, as possible?  And if I wake the morning of departure to a fibro flare, how would I be best to manage that?

I am going to step to the edge, and fly (unlike the kiwi).  Whatever the pain, I know this is worth it.  But anything I can do to lessen that pain, would just make damn good sense.

“I am not the same having seen the moon shine on the other side of the world.” 

―    Mary Anne Radmacher

Related articles

• Facts about kiwi  (conservation.govt.nz)
• 7 Keys to Savvy Traveling with Fibromyalgia (myrestoredhealth.com)
• Fatigued Hope (infinitesadnessorhope.wordpress.com)

Where Is My God When It Hurts?

Last week I wrote about struggling to find hope in the midst of the chronic pain and fatigue of  fibromyalgia (see Fatigued Hope). I admit I’m still battling this one. I don’t think there is a simple answer, yet I am frustrated by having previously written about hope, but not being able to find it to apply in this situation.

A number of people commented, in relation to that post, that I should perhaps look to my spiritual beliefs. Hence my question: where is my God when it hurts? The question is phrased as it is because I believe that spirituality is an individual thing, and as such where your God is when I hurt is not actually of much significance to me. It is in terms of how you might find comfort in your trials, but for me personally, it only about my perception of who my God, or higher power, or whatever I like to call it, is for me.

When I google the question ‘Where is God when it hurts?‘ I find that Google kindly has about 95 million responses for me including a book title, by that name, by a Philip Yancey… which I’m sure my father owned.  I suspect I would have come across it as I dealt with Dad’s enormous collection of books after his death.  Maybe I should have stopped to read it, although I would have been there forever if I had taken that approach to every book that caught my eye.

Quite frankly the answer to all my questions was probably in my garden shed (that’s where Dad kept his library), or maybe I could say right under my nose.  What’s more, if my father had been alive, he would have been quick to answer my question for me.  He was, after all a Christian minister, well versed in theology and my blief in God is based on the Christian god figure (although not some of the organisational aspects of churches).  But even if he had been here, that would have been his answer, not mine.  And I suspect I would have been still wondering.

The reality I learnt long ago is that other people’s views on spirituality actually don’t answer my questions.  They might provide the answers for them, but I have to find my own answers.  So I’m not even going to bother with Google’s suggestions, or what I know would have been Dad’s.

I believe that religion  serves a different purpose for each person.  Nothing is right or wrong, as we are each different people with different needs.  My own beliefs form a basis for how I treat other people, and I think I’m slowly forming a means of how I treat myself.

Translating that into hope in spite of trials is not something I have yet achieved.  Oh, I was trained well and can quote a million Bible verses at myself about having hope and trust in the God I was brought up to know, but that doesn’t actually cut it for me in terms of finding purpose in my suffering.

I find it incredibly frustrating when I am told that everything happens for a reason.  Maybe it’s true, maybe it isn’t, but it seems an incredibly cold way of comprehending, and giving reason to why some people suffer so much.

This posted started in terms of my own struggle with pain and fatigue.  I know that it is nothing compared to what some people suffer each day, and actually in that I can find a little peace for myself.  I can be thankful for what I have and have not.  But I will find it incrediblyy annoying and frustrating if you tell me to find joy in my pain, just because my Bible tells me to.  It just doesn’t work that way for me.

A book that I have found useful over the years, mostly to dive in and out of because I have yet to read it cover to cover, is Harold Kushner’s When Bad Things Happen To Good People.  I like this book because it is written by someone who has had plenty of bad things happen.  He knows suffering yet he still somehow believes in who he sees as God.  Here is an excerpt:

“I have to believe,” one friend said, “that everything that happens in life, happens for a purpose.  Somehow or other, everything that happens to us is meant for our good.  Look at it this way.  You were a pretty cocky guy, popular with girls, flashy cars, confident you were going to make a lot of money.  You never really took time to worry about the people who couldn’t keep up with you.  Maybe this is God’s way of teaching you a lesson, making you more thoughtful, more sensitive to others.  Maybe this is God’s way of purging you of pride and arrogance, and thinking about how you were going to be a success.  It’s his way of making you a better, more sensitive person.”

 Harold Kushner - When Bad Things Happen To Good People  (p. 30,31)

It’s a pretty common way of thinking.  Suffering is God’s way of teaching us a lesson and making me a better person.  Me?  I hate it when I am told that.  Everything in me gets angry because I think things like ‘What was wrong with me before?‘ and ‘Why do I get this lesson in suffering when others get off scot-free?‘.  Oh, and,‘Why does God hate me so much?’

That frame of thinking is easily said to another person (sadly) but for me it makes God into a hateful , hurtful and vengeful god.  And that’s not who my God is.  My God doesn’t want me to be hurt, and has great compassion for me and all others.  If it works for you, that’s great but it doesn’t work for me.

Having said that, I know what doesn’t fit for me but I still have no answers in terms of needing to find hope in chronic illness.  I still need to find some purpose to it, and I still need to find a way of accepting it as my reality.  Some years ago I came to the point where I could accept my mental illness.  It’s not that I liked it, but I could accept that it is part of me and what makes me who I am.  I can even see some purpose to it in terms of sharing my experiences hopefully in a way that will encourage others.

But accepting the physical illness is not easy for me.  I’m struggling to find purpose in day after day of pain and fatigue.  I struggle to live with it because my life becomes so impaired by it.  I also struggle with the invisible nature of it, which means that people around me assume and expect me to do more than I am physically capable of.  Yet I want to be able to do those things.  I don’t want to be so limited, but I also need compassion from people.  If I accept these illnesses and the chronic nature of them, I feel like I am giving in to them.  I don’t want to do that.

So where is my God when it hurts?  Actually I’m not sure.  Quote the Bible at me, and it will leave me cold.  I know all that in my head, but my heart struggles to find personal purpose and hope.  I admire people who are able to take their faith and apply it to their current situation, but right now that isn’t working for me.  I guess I’m still a work in progress, and I hope my God treats me gently.

I finish with something my mother used to say to me when I was young.  I had no idea what it meant, but somehow it’s still stuck in my mind.  She just used to quote the first part.

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

 - 1 Corinthians 13:12  – King James Version

Related articles

• Fatigued Hope (infinitesadnessorhope.wordpress.com)

When Your World Turns Upside Down (reposted)

A few weeks ago I published this post but removed it shortly after, when I felt uncomfortable having shared what is contained in it.  I now feel more comfortable with sharing it, and so am re-posting it.  I apologise to those who read the original post and commented, before I deleted it.  I did appreciate your comments.

Today has been the second anniversary of the worst earthquake we lived through in Christchurch, NZ.  185 people weren’t so lucky and lost their lives.  Many more were injured.  And yet many more have suffered health problems (and for some death) following the quakes.  For me, my father died six weeks later, my mother is a completely different woman and my own fibromyalgia is attributed to my trauma from that experience. 

Our lives literally turned upside down.  While recovery, repair and rebuilding slowly take place, for about 450,000 residents life will never be the same.  This post is about what came to matter.

My world has literally turned upside down in more than one occasion. It has been frightening, life changing and heart stopping (both literally and figuratively when I look across my family who also experienced this). It happened, for me, by way of massive earthquakes, but for others it might have been tornadoes, hurricanes, bush fires, floods, tsunamis or a number of other events that we know as ‘natural disasters’.

It might be ‘natural’ but nothing seems ‘natural’ at the time. Everything is totally unknown and shocking.Out of nowhere, comes complete devastation. The question that repeatedly came into my mind as I was in a number of major earthquakes in Christchurch, NZ was “how can the earth do this?” It was simply beyond my wildest imagination that the world was capable of moving like this, yet now it was my reality.

If you have read back through my posts you may have read some of this before, but this is a different angle than that which I have shared previously.

In a few weeks it will be two years since Christchurch experienced its worst (although not biggest) and deadly earthquake. On 22 February 2011 a 6.3 earthquake, centred just 10 kilometres from the central city, hit on a busy, summer Tuesday. It wasn’t the first, or the last quake to devastate the city.

Nearly two years on, it seems that finally the after shocks might have died away. There are still occasional ones just to remind us of our terror, but mostly now it is about concentrating on rebuilding ourselves, our homes and our city. Or waiting. There is so much waiting. In early days for supplies of fresh water, now we wait for the Government and Insurance companies, and of course we wait at the thousands of roads-works holding up traffic as the repairs to roads, water pipes and sewers go on.

Five months earlier on 4 September 2010 at 4.35am I was woken by our first quake. It was a 7.1 quake centred just out of the city at Darfield (about 30 kilometres away). It was dark, and I woke to this incredible violent shaking. Initially I had no idea what was happening. In New Zealand we are used to minor quakes but this was far beyond anything I had experienced.

As children we had been taught that in an earthquake you make your way to a doorway or under a table. Instinct somehow kicked in. Moments before my cat had been asleep by my feet, but I couldn’t see or hear where she was. That instinct saw me grab my teddy bear and try to make it to the doorway. It was only two metres but it seemed like miles because the cupboard doors on one side, and the bed on the other, were being tossed and thrown around the room. I literally had to fight to get past.

I clung to the door frame, and as I did I realised that there was an old doll on my bedside table. I had grabbed the teddy bear but I hadn’t grabbed the doll, and now I wanted her. I wanted to go back. For a moment, she was everything in the world, but then I knew I wouldn’t make it back. Right then I wasn’t sure if this was the end of the world, or was it a very bad earthquake. I just hung on and hoped it would end. I hoped my doll would still be there when it stopped.

When these ‘natural’ disasters strike they tend to be life-changing in many ways that one would never have expected. What is important takes on new meaning and you find that things you thought were important, don’t hold the same value you thought they did.

On that dark September morning, all that mattered to me was my cat (who I didn’t see for another two days) and the teddy bear and doll. I thought my world was ending. It would have been useful to have my mobile phone from the bedside table, but I didn’t think of that until it rang a few minutes later (what became a regular ritual of checking on other family members).

There wasn’t much logic to what was important but in time I would repeat the same choices. Five months later, when the February quake struck it caused much more damage because it was closer to the city centre, it was very shallow and it was lunchtime on a busy work day. My parents lived in an apartment building in the city centre, and when they (and I) struggled down the damaged stairs some time after the quake, they were leaving the building forever. I was with them that day, and while I had time to grab my bag, they had no time to grab anything. Dad had his car keys. That was all.

Their experience made me question my priorities again. What really mattered? Actually a lot didn’t matter. Mum was understandably upset because she hadn’t put her wedding rings on that morning.

We were fortunate that my brother and I were able to go back into the building for a short while several months later. By then we had worked out what really mattered. There was mum’s rings, my grandfather’s World War Two medals, and family photos. Of a houseful of possessions we had narrowed it down to that.

It seemed a little crazy to walk past broken china on the floor. Items my parents had got as wedding gifts and had been part of our family for my whole life. They didn’t matter. They just weren’t important. I’d like to say that what mattered was that we were all alive, but by that time my Dad had died. The stress of everything had beaten his heart.

But we do have everyone else, and some families weren’t so lucky. We are fortunate. We found mum’s rings and Granddad’s medals (although they mysteriously disappeared later). We retrieved most of the family and ancestor photos that couldn’t have been replaced.

For me, I lost precious items in my home too, particularly gifts from friends. Smashed on the floor. But two years on those things don’t matter. The things that did matter, which were of my heart, were my cat, my teddy bear and the doll. Oh, and I never take my rings off now. I learnt that lesson from Mum.

“You can’t help respecting anybody who can spell TUESDAY, even if he doesn’t spell it right; but spelling isn’t everything. There are days when spelling Tuesday simply doesn’t count.”

― A.A. Milne

Related articles

• In My Corner Of The World… There Is Hope (infinitesadnessorhope.wordpress.com)
• Good From Bad (infinitesadnessorhope.wordpress.com)
• One Year On (quakestories.govt.nz)

Fatigued Hope

Hope has been important to me for a while now.  Finding my own, and then holding onto it has been a break through for me in terms of my mood and my mental health.  But once I’ve got it, I admit that it’s not always that easy to hang onto.  This time it’s not my mood which is directly affected, although it’s clear to me that if I don’t get a grip on it soon, my mood could easily start to falter.

Right now I am so tired.  Fatigued seems a more appropriate word to use because tired just doesn’t quite capture the extent of it.  You know that feeling when you’ve taken sleeping medication, and your eyes are getting heavy, and you can’t concentrate any more?  I feel like I’ve been taking sleeping medication three times a day regularly, and am still trying to function as a normal, awake adult – without sleep.  It’s really not working.

I know that this is just standard for fibromyalgia, but right now my fatigue is worse than my pain (but don’t be fooled because that is still substantial).  All I want to do is sleep.  Give me a few spare minutes and you’ll find me drift toward my bed.  “Just a few minutes“, I tell myself.  But it will never be enough, and so usually I just keep going.  Actually right now I would have said I was sleeping better than usual.  But I wake up exhausted, and that is simply the way of fibro.  Apparently we don’t get any deep sleep, and so I find myself like this often.

My eye lids have been twitching (I’m sure there is a proper word but you’ll hopefully get the idea) for about five days now.  Initially I was worried, and wondered what was wrong with my eyes, but now it seems like it’s becoming normal.

I sat in therapy today struggling to comprehend what my therapist was saying.  I don’t have brain fog as I usually know it but it was just too tiring to follow one end of his sentence to the other.  And when I tried to explain it?  I didn’t get the message across.  He had been surprised that I was sitting there in pain (I’ve only had fibro for a year and been seeing him throughout that time).  Seemingly I should have had a sign around my neck.  While he heard that I was exhausted (and I appreciate that he did) it was difficult to get the full extent of my struggle across.

I’m getting the clear impression that if I look fine to others, then apparently I must be fine.  And isn’t that the difficulty of an invisible illness?  Fibro is one of many illnesses where a sign around the neck is important.  Of course I can tell people how I really am, but the repetition would drive anyone to sleep (including me).

Instead of driving people to sleep I keep it too myself largely. “I don’t want to complain“  “It doesn’t matter.”  There are lots of things I can tell myself but the reality is that largely it’s just easier to keep it to myself.  The thing is that quietly my hope is fading.  And I hate that because I just don’t want to go back there.

So what is hope in respect of an illness like fibro?  I don’t know.  This is a chronic illness.  There is no cure.  At the moment I can’t get medication to treat either the symptoms or the pain.  Oh, and I can’t afford alternative treatments right now either.  So how does hope fit into this scenario?

I have this sense that somewhere inside myself I need to come to a point of accepting the illness.  But how?  I don’t want this pain and fatigue for the rest of my life.  So how do I accept it without resigning myself?

My symptoms have got significantly worse in the year since I was diagnosed.  How do I have hope for my future with that in mind?  Right now my symptoms are dictating how I live my life.  I want to choose how I live my life, not have an illness do it for me.  How?  How do I be the one in control?

If you’ve had any flash of inspiration I’d love to hear it.  But don’t just tell me it will look better tomorrow, because I doubt that.  Tomorrow might be different levels of pain and fatigue but they will still be here.  That’s just the way it works.

“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.” 

―    Elizabeth Wurtzel

When Do You Lose Your Right To Be Treated Humanely

It always fascinates me the way ‘Joe (and Jill) Public’ start venting in the comments sections of news articles and social media when there has been some type of head-line grabbing violent crime reported.  It’s true the media themselves tend to make, what I call a, hash of reporting, because they report what it suits them to report, what will get them readers (and ultimately revenue) rather than what we, the public, need to know.

But it’s what the everyday reader has to say that really grips me because suddenly it seems as if the article is not about a human being but rather some ‘non-human’ (some people use the term ‘animal’ but I am reluctant to use that term because animals don’t general commit violent crime).

I have never been in the shoes of a person who has lost a family member, or loved one to violent crime, and so I can only begin to imagine what a terrible experience that must be.  In what I am saying I don’t mean to take away from the grief of people who have just had a loved one ripped away from them by a crime.  Nor am I commenting on the ‘right’ or ‘wrong’ behaviour of the perpetrator. Rather what my focus is on what point do we as the general public decide that a person’s crime or behaviour is so bad that they don’t deserve to be treated with compassion as a human being?

Most recently in the news has been the case of Christopher Dorner, the ex-LAPD officer who went on a killing spree.  From various comments I have read today, it seems few have much regard for his humanity.  It was the same for Adam Lanza who killed 28 people in Connecticut in December, 2012.

“I have no sympathy for him”

“He’s a nut job”

“He doesn’t deserve to live”

“He clearly needed mental help”

And on the comments and judgements go.  It’s like suddenly the public view is that this person (the perpetrator) is no longer human.  If he burns alive in a cabin, then somehow he deserves it, for the things he has done.  So often people in this situation get written off as being presumed to have a mental illness.  What else would make them act like this?  And if they have a mental illness then they don’t deserve any better.

Well actually let’s just remember that the majority of people with mental illness don’t act like this.  What’s more, if they get the treatment and support they need, when they need it, such violence can be prevented.  But instead the Christopher Dorner’s and Adam Lanza’s of our world get written off.  “No longer human kind, they deserve what they get.”  By the way I’m not saying either of them had a mental illness, but it does seem to be the reason given for so much crime like this.

I’m wondering though, what it feels like to be the family of these people who have committed horrific crimes.  Actually I think that is almost beyond our comprehension.  It’s too easy, in my mind, to forget that these people had families.  They may have had friends.  They had people who love them.  And how must it feel to be those people, firstly having to bear the weight of what their loved one has done, and then carry the general public’s judgement of their loved one.

Actually it must be almost crazy-making to be in that situation.  How do you grieve for your loved one, while the world hates them?  Grieving for the loss of a family member is hard enough usually, but to carry the hate of the world against that person you loved?  That would be too much.  I suspect that’s why the media seem to avoid the Dorner family or the Lanza family.  Not because they don’t want the ‘dirt’ but because it doesn’t sit right on their conscious to feel sad for them in their loss, and to balance their hate  for the perpetrator.  It’s not about wanting to give them space to grief either.  It’s just too damn uncomfortable.

If we can start to express compassion for the families of those people, then maybe we are on track to realise that in spite of their crimes, these perpetrator’s are/were human beings… just like us.  Surely for some to inflict such crime, something has gone terribly wrong somewhere.  While I don’t for one moment condone the crimes committed, I can’t help but ask “what went wrong?” and “how could this have been avoided?”.

I’m sure there are lots of answers to those questions.  Some of them we know to be around mental illness and treatment.  In other cases it might be some other type of illness, or something completely different.  I just hate the thought that we write people off as human beings so easily.  I hate their crime, but to me, they will always be deserving of as much care as I deserve.  Their families deserve as much compassion as the victims’ families.  For really, in these situations, actually, everyone involved has become a victim.

♦

“It’s funny how humans can wrap their mind around things and fit them into their version of reality.” 

―    Rick Riordan,    The Lightning Thief

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A Band Of Warrior Women

I was sitting in a medical waiting room this morning; waiting while my mother had a blood test. This was the second waiting room for the morning, and we had one yet to come.  Looking around the room I noticed something that I had seen before, in other waiting rooms.  Here was an older person sitting next to a middle-aged woman.  The combination was repeated around the room, and was there to be seen in all the other waiting rooms my mother and I have recently been in.  Presumably often a mother and daughter, occasionally father and daughter.  A band of warrior women, presumably supporting their parents.

I don’t mean to be sexist, but in all the times I have seen this happening, I have never seen the middle-aged woman replaced by a middle-aged man.  Occasionally it is an older man accompanying the older woman, but mostly this seems to be the domain of middle-aged woman.  There to support their parent.

My mother is due to go into hospital to have an operation next week and since she has taken to wanting me to take her, I have learnt a routine.  From my mother’s perspective it is easier for her if I drive, and have to worry about parking.  And it is easier on her if I navigate us through buildings to where she is meant to be.  From her perspective my role is then to sit quietly and be the dutiful and supportive daughter.  Often it seems from the doctor’s perspective it is good to get another opinion of what is happening, and even a slightly quicker answer.

As an aside today my mother chose to tell a nurse all about giving birth to me, and then about her last job (some 50 years ago).  All this when actually she was meant to be saying how well (or otherwise) she managed around the home.  When I stopped and thought about it I imagine that it made mum’s day to have people so focussed on her and what she has to say.  Usually I’m the only person she sees.  And with that, I relaxed a little and decided the nurse could handle the time management.  Let mum enjoy this a bit.

In the back of my head I guess I’ve always known that it is often the female off-spring who end up providing more support to elderly parents.  Especially single females have often been expected in the past to give up their own lives to look after parents.  I’m not sure that I had ever given the whole thing much thought.  Perhaps I should have.  I am the only female and have two brothers.  Neither of them are in positions to support mum this way.

I guess I take it on because I am available, but I suspect there is a sense inside of me that this is what I should do as her daughter.  And my guess is that all these other middle-aged woman in waiting rooms have had the same sense.

What I’m wondering is the difference between the sexes.  I know there are men who look after elderly parents, although it’s not what I see while I’m sitting in waiting rooms.  I’m wondering do men feel some sense that they should be supporting their elderly parents in these practical tasks?  And how do you deal with it that sense if you simply don’t have the time or flexibility to do these things?

And what happens to the elderly people who don’t have a warrior woman (a middle-aged daughter) to help?  I know (and she commented) that mum would have really struggled this morning to go to all the appointments that were necessary today.  She would also have forgotten most of what she was told at the appointments, had she not had me there to listen.  That said, she would never admit to that.

It makes me think that elderly people who don’t have family able to help must really struggle.  It must be a very lonely and isolated life if there are not people there to help.  I’m inclined to think that I have never stopped to think how hard everyday life can be when you’re old.  Instead I just get frustrated when stuck behind them in a queue.

As I think I said recently I admit that I’m too taken with old age right now.  I hate the term middle-aged (because I still think of myself as in my twenties) but it is much preferable to what is to come.

♦

“I would like to believe in the myth that we grow wiser with age. In a sense my disbelief is wisdom. Those of a middle generation, if charitable or sentimental, subscribe to the wisdom myth, while the callous see us as dispensable objects, like broken furniture or dead flowers. For the young we scarcely exist unless we are unavoidable members of the same family, farting, slobbering, perpetually mislaying teeth and bifocals.” 

―    Patrick White,    Three Uneasy Pieces

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Remember You’re a Womble (Or Whatever You Are)

If you didn’t have your childhood in the 1970′s you might not remember The Wombles. If you don’t remember, it’s worth taking a few minutes to watch this clip from the first episode.

The Wombles were fictional pointy-nosed, furry creatures that lived in burrows on Wimbledon Common, where they aimed to help the environment by collecting and recycling rubbish in creative ways. At just seven when this series came out, it was perhaps the first time I had heard of recycling and you know what? The Wombles made it fun.

My favourite Womble was Orinoco.  He was a little bit lazy compared to other Wombles, but still as honest and kind-hearted as the rest of them.

There were many songs but my favourite was Remember You’re A Womble.  A reminder to be true to your Womble spirit.  I am not ashamed to admit that I can still sing this, to the horror and amusement of my teenaged nephews.

But the purpose of this post is not about Wombling, but about remembering who I am.  I take a massive leap from the environmentally friendly Wombles to introversion.  Mostly because I can.

I am an introvert.  That said, I often choose to take on the role of an extrovert, and therefore am assumed to be an extrovert.  Actually I think this is the case for many bloggers, and there is nothing wrong with doing this.  The problem becomes when it is assumed you should always act like an extrovert.  Actually there is nothing wrong with being an introvert.  It is not a disease.  Personally, I love it.

I found this description of introversion on Psychology Today:

“If a crowded cocktail party feels like a holding cell to you, even as you gamely keep up your end of the chatter, chances are you’re an introvert. Introverts are drained by social encounters and energized by solitary, often creative pursuits. Their disposition is frequently misconstrued as shyness, social phobia or even avoidant personality disorder, but many introverts socialize easily; they just strongly prefer not to. In fact, the self-styled introvert can be more empathic and interpersonally connected than his or her outgoing counterparts…”

Unless you take the time to really get to know me, I don’t come across as shy, but then being an introvert is not about being shy, even though that is how many people see it.  Back in the days when I was working full-time I was working as a corporate trainer.  I spent my days in front of a group of people, facilitating training.  Actually I loved public speaking and got energised by it.  One of the most fun things I ever did was compere a fashion show (who of my friends remembers that?).

What made it possible for me to do those things was that I would go home at the end of the day and recharge… on my own.  It doesn’t even mean I lived alone, but time alone was my opportunity to plug in the batteries and let them recharge over night.

As an introvert I do a lot of thinking, perhaps rather than a lot of talking.  I don’t need to talk through what I’m thinking.  I don’t necessarily need to get recommendations from those around me to be able to make my decisions.  As an introvert, I tend to get distracted and side-tracked by others and am much better to do my thinking alone.

To people who don’t work that way, probably extroverts, that is just plain weird.  It’s not though.  It’s simply how it works best for me and millions of other introverts.  As I said before there is a tendency to think that introversion is about shyness and being a quiet person.  It’s not.  I am just as capable as the nearest extrovert of being ‘out there’ and loud.  But it’s not where I get my energy and it’s not the real me.

Recently someone who I thought knew me better, accused me of having not thought through a decision I had recently made.  He drew that conclusion simply because I hadn’t discussed it with him in the way he was expecting.  Actually I had spent hours thinking the decision through, and also listening to what was being said around me by a number of people (including things that he had said).  That’s just how an introvert will work.

Remembering you’re a Womble connected so well to this, because when he said this I thought I had done something wrong.  I hadn’t.  I was just being a Womble (and a proud one) or an Introvert.  The way I function and operate is not wrong, simply because it is different to anyone else.  It is simply being true to who I am.  It’s a shame if other people can’t accept that, actually, we are all different… and that is good.

And in case I’ve left you wondering…  I’m not saying that Wombles are introverts, although they do tend to be wary of humans.  I know the feeling.

♦

“Solitude matters, and for some people, it’s the air they breathe” 

―    Susan Cain

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This Is Not About Animal Cruelty

Image credit: Flickr.com/iambents
http://www.flickr.com/photos/superciliousness/15026740/

Somewhere along the way I learnt to ask myself ‘what can I learn from this?’, when I see sad, or bad things.  It’s not a bad way to approach things when I think about it, and I suspect it is something that my father taught me, by example.

I’ve had a pretty tough weekend.  I can’t go into the details out of respect for people I love.  I know that’s not really the idea of a blog (in many eyes), but you’ll have to bear with me on this one.  I’d rather talk about what I’m learning than about the details.

This morning I saw a particularly nasty picture of animal abuse and cruelty, when I went through my Facebook news feed.  The issue of animal cruelty has always been important to me.  It is so wrong and I hate what is done to animals in the name of humans who think they have the right to do what they like.

I haven’t included the picture in this post, partly because it’s not my picture and getting permission to use it would be time consuming; but more so, because it is simply too disturbing.  If you feel the need to see it, you’ll find it on the Empathy 2012: wake up – change yourself – change the world Facebook page.  But it’s simply a visual image that got me thinking.

Let me try to describe the picture.  There is what looks like a carcass of a rhinosaurus.  It has been severely butchered, and it is clear to see that the tusk has been savagely removed.  No doubt that is the reason for the killing.  Next to the carcass is a live baby rhino leaning against what is said to be the remains of its mother.  The caption on the picture says:

“This calf was found crying next to its mother; traumatized, devastated; and extremely lucky to be alive.  It is horrendous what these animals goes through.  This is how it currently is.”

This picture. as I ate my breakfast, broke my heart and made me feel physically sick.  It’s not so much a ‘tug on the heart strings’ image but a terrible witness of the cruelty of man.  That said, this post is not about animal cruelty.

My first thought was “who could do this?” but then I know the answer to that.  This is a regular event as people hunt rhinos for the value of their tusks.  This is what human beings do.

Without wanting to take away from the horror of animal abuse, my mind switched to “people do this all the time to other people with words”.  Often without a thought, we cut people down with our words.  Maybe we don’t leave them dead, quite like the picture I have described, but I can’t pretend that words don’t have the ability to kill just as much as the knife these hunters used to butcher the rhino.

It is all too easy to think of only the self, and to just say what ever comes to mind.  I’m no expert on bullying but it seems to me that is what happens in the case of a bully.  But bullies aren’t just kids in the school corridors or on social media. They are also adults who should know better but just never think about anyone but themselves.

I’ve mentioned this issue before (see Disturbing) but I keep reading blog posts about teenagers who have been bullied to the extent that they have taken their own lives.  Yesterday I read of an 11 year old who recently died.  Yes, that’s right.  She was only 11.

These are the cases that make it to our screens, that the media picks up on (and has a field day!) but I think we potentially do this to other people every day, simply because we don’t think before we speak or act.  Okay, so I might be exaggerating and not every interchange like this ends in suicide.  My point though is the harm that we are all capable of doing to others when we don’t stop and think, when we don’t put ourselves in the other’s shoes, when we don’t simply treat others as we would want to be treated ourselves.

So often we can say things, and never know the consequences of what was said.  And while we are not responsible for how another person reacts to what we say, I believe that I owe everyone I come in contact with, my compassion and understanding.  I’m not going to get it right all the time, but I can try to live by the principle of putting myself in another’s shoes before I open my mouth.

I’m sure that needs to be an abiding way to live in all our interactions, with people (or animals).  I’m sure that doing so would avoid the literal, or figurative, picture I faced on my screen this morning.  It’s not just children and teenagers who can be bullies.  We do it so often ourselves as adults, without a thought.  Surely it’s time we thought first.

♦

“I would rather be a little nobody, then to be a evil somebody.” 

―    Abraham Lincoln

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