EMBRACE [REJECT]

Ever wondered why a bulimic “chooses” to throw up?

Or what thought processes are going through someone’s head when they’re doing something most consider astonishingly dysfunctional, unpleasant and possibly insane? Here’s an average day, in the life of a bulimic. An (unemployed) bulimic with a gastric lap band – aka,  surgical bulimia… (And ps, if you’re a bulimic wannabe looking for “tips”, I’m trying not to offer any. The internet is full of them – if that is the path you really want to travel. I have no desire to inflict this pointless and painful journey on anybody. Ever…)

Woke up feeling exhausted but still pretty good emotionally! Leapt out of bed and jumped on the scales. My daily routine – get up, go to the toilet, strip naked, stare down at the fateful numbers that will dictate the beginning of my daily inner monologue. Prior to seeing those numbers, it’s Schrodinger’s cat all over again – my self-worth is both dead and alive simultaneously.

Today my weight is up. I’ve now hit a dreaded number, slap bang in the middle of my healthy weight range. A number that also represents the weight at which I was first sent to Weight Watchers as a teenager. Therefore any number from here and above = fat, and demonstrates my continuous failure to control my appetite and hedonistic desires, and led to me sitting in the Weight Watchers piggy corner more often than not. My BMI is now 22. I hate, hate, hate the thought of being at 22 again. I want it to be 20. Or 18. Or 15. Or really, I just want to disappear… Because if I can’t get on top of it now, I’m going to be back at 24, or 26, or 33 again… And the god-awful shame of being so fricking fat – again!! And knowing everybody is looking at me, thinking how inevitable it was I’d regain it all. Because I’ve done it loads of times now.

I hate being so weak.

I still don’t feel too bad today – emotionally. I can see and feel light. Positivity. Hope. There hasn’t been a lot of this lately. So today I will eat like a normal person – whatever that means. Perhaps if I stick to fruit and veg and a little bit of protein, I’ll “feel good” about what I eat. I don’t know what that would feel like… In 50 years, I have never, ever, “felt good” about what I’ve eaten.

I contemplate whether to make porridge for breakfast, or to go to the effort of cooking a couple of eggs to have with baby spinach and gluten free toast. Surely that’s nutritious? And normal? And not ridiculously fattening? I wonder how many calories it has? How many carbs? Best not to look it up… That would be reinforcing and relearning old behaviours. But as soon as I go downstairs I see leftover sticky black rice custard in the fridge. It was delicious. Nobody else liked it though, so it will go to waste if I don’t eat it. I know it’s just carbs– but at least it’s homemade… Right? And this is just a one-off… And if I eat it with some banana and Greek yoghurt it might be construed as healthy? Perhaps if I eat it fast enough, it will get “stuck” and I’ll be able to throw it up easily, then maybe go for a long walk, and the rest of the day will be better.

I sit up in bed, eating my dessert-breakfast and sipping chai tea. Should I throw it up or not? I very rarely throw up breakfast… If I throw up the first meal of the day, I throw up the rest of them, and I end up feeling utterly exhausted and have a sore throat and husky voice and bad reflux and an aching belly, and I worry I’m damaging my lap band. So I eat slowly enough to make sure it stays down. Finish my cuppa, check emails and catch up on the news.

Time to get gym clothes and walking shoes on.

I’ve had a crap breakfast and now I need to make a valiant effort to at least walk a few grains of rice off. I’d probably have to walk to the equator and back to actually burn off what I’ve consumed… But a one hour walk to the beach should be enough to offset it a little bit. Right?! I’d like to start jogging again, only I’m having trouble with my hamstring and my knee joints –getting too old! I wonder if I’ll ever be able to run again?! That would be a quicker way of burning off my flabby fat.

I walk to the beach, thinking the whole time what kind of moron needs to exercise two-three times a day, just to burn off a small percentage of calories from food she ate, but didn’t really want to eat? What kind of idiot, willingly consumes foods they do not want, and do not need? Why am I so obsessed and stupid and WHY can’t I just eat like a normal person? Perhaps if I get a job – I think I’m mentally ready to work now, I’m in a much better place than I was a few months ago – perhaps if I get a job I’ll get a “normal” routine and be able to eat three “normal” healthy meals a day just like a “normal” person.

Get ready and organised to visit grandma at the nursing home. Oh gosh… She wanted me to replenish her biscuit supply. Even though it’s pretty much me that eats them all the time… Drop by the supermarket and grab two packets – you know, to save me going back in a hurry. Then grab a third variety of biscuits. Because you know, perhaps she’s getting bored with the ones she has? And the fact this new packet is an old favourite is irrelevant…

I’m sure the only person I’m thinking about now is grandma.

Arrive at nursing home to discover she’s still in bed – apparently refusing a shower today. She refuses most showers… She’s in a bit of a grump, and when I suggest she might like to have a shower, because she’s only getting one or two a week, I get a few more strips torn off me. I make us both a cup of tea and crack open the biscuits that just moments before, I was bargaining with myself not to eat. Not one, I said in my head – because if I start I won’t stop, I know that! I eat eight biscuits while making a cup of tea – shoved them in really quickly, no enjoyment, just washed down with guilt and self-loathing. When I get back to her room, I manage to throw a couple of them up. Now I’ve really only eaten two biscuits. The morning turns out not too bad all things considered. Only eat about four more biscuits – but successfully throw them all up. I manage to use a few different toilets so nobody can witness me throwing up or using them “too frequently”. I also manage to avert my eyes after each purge, so nobody can see my flushed face and tear-filled eyes. It’s impossible to purge without watery eyes…

Wander into the city about 2pm and can’t decide whether to eat or not eat. Eat or not eat. This dialogue has been going on in my head ever since I opened the stupid packet of biscuits, which I knew I would eat, and hate myself for. If I want to be a normal, healthy person, then just accept I ate some biscuits and go and eat some normal healthy lunch when/if I feel hungry. But then again, I’ve only eaten rice custard and biscuits today so there’s nothing normal. Perhaps I should eat some vegetables and protein to get some nutrients in and settle my mood. Under no circumstances will I go and eat takeaway crap. Try and distract myself as much as possible.

Hang on – that wrap in the bakery looks delicious!  

It looks like roti bread? Filled with pulled beef and Asian greens. Looks kind of cool and delicious. I’ll get that. With a latte. That’s almost healthy, right? Beef has protein and my iron is plummeting again – because I never keep food down. Buy the wrap and toffee and spy a chocolate raspberry brownie. But now I’m thinking, this is high carb, low nutrition food again. I need to eat as fast as is humanly possible because then I have an excellent chance of throwing it all up and losing some of that weight I’ve been gaining.

Shove it in really quickly, making sure that as soon as my lap band starts to feel uncomfortable I pile more on, because then I’m guaranteed to chuck. I squeeze the whole roll in. It’s painful, and not pleasant – uncomfortable doesn’t even really begin to describe it. Success. I’ve shoved it in. Tasted pretty good, but washed down with hate and mental images of my grotesque and scar riddled body getting even fatter. I can’t bear the thought of food staying inside me.

I get the coffee down and only manage about three small bites of the brownie. I wonder how long I need to stay seated here so it’s not obvious I’m eating and then purging immediately? I’ll wait three minutes… Lucky the toilets are nearby – I am incredibly uncomfortable and I absolutely do not want to spontaneously vomit in the middle of the coffee shop. The toilets are busy… The cubicles furthest from the door and mirrors are all full. I’ll have to use the one fourth from the end. Hopefully nobody will notice my feet facing the wrong direction… And I desperately hope nobody can hear me with my fingers down my throat, gagging and retching. I don’t like throwing up in public toilets –so unclean! I don’t like to get too close or touch it at all – gross!!! But it’s harder to purge really thoroughly… I get all the brownie up and maybe half the roll? It’s always hard to tell… I don’t have a bottle of water with me, so it’s hard to get any more up. And I would be mortified if other women in the toilet knew what was going on. Sit a few minutes longer and hope my eyes won’t give me away when I emerge. It is SO exhausting throwing up. I’ve got big bags under my eyes now. And after I’ve thrown up, I always have this ludicrous desire to go and find more food to feed the “hole” in my belly. Which is 100% emotional and 0% hunger… But I want to feed that emotion with food anyway – just as I have always done. And the exhaustion. Throwing up is so tiring.

Quick wander around town, and go do some spontaneous “retail therapy” shopping – that I can’t afford because I’m now unemployed… But retail therapy sometimes substitutes the “eating therapy” – both of which are just destructive ways of numbing the hatred burning inside me.

I have physio at 3pm. She checks my hips and back again, and I have to stand in front of the mirror wearing just shorts and a singlet top. I have huge wads of fat slumping over the edges of the shorts. It is utterly disgusting… Utterly. I have no idea what other people look like under their clothes – and I don’t particularly care. I couldn’t care less how other people look – they all look beautiful to me (well, mostly!) But every ounce of me is too big, too wobbly, too white, too tall, too ugly, and I’ve heard these messages every day of my 50+ years – sometimes from other people, but more often these days, from myself.

Even total strangers have considered it okay to comment on my weight.

I was walking along the beach once, had gained back a few kilos – quite a few… Maybe 15-20? So, I was a bit overweight – not enormous! But overweight. Probably looked like a pretty normal, plump, middle-aged woman truth be told… But a nice Greek lady who smiled at me every day as we passed each other on our daily walk, felt it appropriate to stop and say, “What happened to you?! You used to be so skinny?!” I was a bit dumbstruck… I just said, “I got fat,” and kept walking. All my life my weight has been noticed, and remarked upon. Last Thursday, grandma said, “How did you overcome the fat gene?! You were a fat baby, you were a fat child, and you were a fat teenager!” When I stared at her like she has two heads (a look she should be familiar with by now…) she just repeated, “Surely you know you were a fat baby, a fat child and a fat teenager?!” I told her I was also a fat adult… Then attributed all my current weight loss to the lap band. Which has a modicum of truth!

But I received an interesting comment from my physio. She said, “You’re always trying to be smaller.” And she said it with no judgment at all – nothing to say I should gain/lose/maintain weight. Just an observation that I want to be smaller – wear really flat shoes, lose weight, try and get as small as possible – because that is what my mother desired of me. And now I’d like to be so small I disappear…

Came home and pottered around a little, while downing a cup of tea and some more rice custard. Which I successfully purged – so much easier at home. Went to gym for an hour then came home to find my husband had cooked nachos. He just gave me a fairly small serving. But after the appropriate amount of time had passed, I snuck off to the toilet and got rid of every last morsel. Well… I tried to! Discovered at that point that the weather has turned cold and wet and nasty, so put on my good weather proof jacket and walked to the beach again. Freezing my arse off – the only person traipsing along the streets, in the vain hope of burning more calories. Will three hours of exercise be enough? Somehow, I don’t think so… This over exercising mindset is new… I don’t know that others would approve. I have to figure out ways to hide it when possible.

Got home late – wet and cold and miserable, every ounce of my body sore and aching. I’m too old for this shit. Finished off the sticky black rice so I don’t have to face that dilemma again tomorrow. Sick to death of being sick so I keep it down. Wash it down with several glasses of water and a herbal tea.

Write a blog post about what a moron I am. Realise I am utterly, utterly exhausted. Purging is physically demanding and psychologically soul destroying. I hate every ounce of my being, virtually every waking minute. Despite seeing a positive body image film called Embrace last night, I have made no progress at all. I feel no different. I looked at all those women – different shapes, sizes, ages, afflictions, abilities, strengths, weaknesses… I looked at them and admired their body confidence and believe with every ounce of my soul that THEY are beautiful. But I can never be. I can never be beautiful or thin enough. And it is a vain, shallow, meaningless thing, but it is all I want. It was the one thing my mother wanted from me.

Today was a pretty good day all things considered. But tomorrow, I’ll try to eat nothing at all. Because this attempt to eat like a “normal” person, is a miserable failure.

SILENCE

Suicide: It’s a dirty word… People are afraid of it. They don’t want to hear it. Or talk about it. We judge it – we judge ourselves for contemplating it, we judge others for talking about it. And those that go through with it? They receive the most judgement of all. Those most in need of our love and compassion, kindness and understanding – are the ones most likely to be criticised, judged and condemned.

Suicide: Seven little letters… the action of killing oneself intentionally.

Statistically, suicide is a big deal… But statistics mean nothing to a lot of us… Really, they say nothing to most. We read a number and think, oh how sad. But to really CARE, we need a much stronger emotional connection. For some of us, that might happen when we lose a loved one to suicide. Or experience the trauma of caring for someone after an attempt. Some of us care because we experience that overwhelming desire to commit suicide. And occasionally there are those who have the love, compassion, kindness and understanding to empathise with people experiencing such overwhelming emotional pain that death seems a welcome – and reasonable – option.

I was always expected to be strong.

To be physically strong. To be emotionally strong. To love and care for others and be emotionally independent and not “needy”. I managed those things most of my life. I have an excellent constitution and rarely get sick. When I do – I soldier on and shut up about it. I manage emotions by burying my feelings and needs and focusing on others – by finding joy in giving and nurturing. It feels fantastic to be immersed in doing things for others. It’s not an entirely selfless act – I receive a lot in return. But nobody can be strong for all the people all the time. One day – things change.

My younger sister was allowed to be frail. She was delicate and beautiful. She had mental health issues from age 13, and her first suicide attempt at age 21 – with many attempts over the years, some more serious than others. Compassion and kindness were hard to find – even in myself in those early years. It is not easy to have compassion for something you don’t understand – but while age may bring unwelcome wrinkles and grey hairs, it does have a habit of bringing perspective and experience. My sister did not die quickly from suicide. In the end, she drank herself to death over 14 years, dying at age 40 from alcohol related liver failure. She refused all medical treatment, with which she would be alive today – and died a miserable, painful, slow, undignified death. Surely just a slow form of suicide. She lived 27 years of abject misery – with severe depression, crippling anxiety, chronic eating disorder and self-harm issues, along with many other symptoms of borderline personality disorder, for which she refused to be treated.

“She refused to be treated.” I can hear the chorus of voices already, singing out, “But she had a choice!” No she didn’t – she was sick. She had major mental health issues. In all the years I watched her bizarre and inexplicable behaviours, causing untold grief and misery to those that loved her, the most miserable person in the entire scenario was always my sister. Nobody – absolutely nobody – chooses to be that miserable. Nobody wants to die clinging to an empty wine bottle and a bag full of cigarette butts. But sometimes illness defies logic and resists treatment. And that may be incredibly frustrating to onlookers… Just as there are physical ailments that refuse to respond to antibiotics or chemotherapy or painkillers, sometimes there are psychological afflictions that are too much for treatment. My sister was one such person. She is finally at peace – peace she never found in all her previous years.

And me? Well the first time I remember wishing I was dead, I was nine years old.

I wasn’t suicidal. I was just pissed at my mother and thought the best way to punish her for her “misdeeds” (I have absolutely no idea what…) would be for me to be dead. She had lost one child – I knew how much that had hurt her. I tried running away a few times from age six onwards – mostly I would pack all my favourite socks into a little red lunchbox and walk up the road until someone brought me home. But I distinctly remember wishing to punish her with my death when I was nine. I had that thought on and off over the next decade.

At 19, I was more serious. I was no longer living at home – my parents were struggling, my brother estranged from the family, and my sister causing much distress and mayhem with her own mental health issues. I was making a small living doing a bit of teaching – had very few friends or meaningful connections, felt miserable and purposeless, and had no sense of hope for the future. I went through my housemate’s comprehensive stash of medications and took quite a few boxes. I don’t remember much else… I vaguely recall phoning Lifeline and then waking up a day or so later at home feeling like an abject failure for not even killing myself successfully. (The internet has come along in the meantime, and that overdose should have killed me… I guess I really do have an excellent constitution!)

The following year I went to university, found some wonderful (lifelong) friends, and serious thoughts of suicide mostly diminished for two decades. I got married, had awesome kids, worked and travelled. Then middle age hit and my life took a turn for the worse.

The stresses that led me to chronic suicidal ideation are not relevant. What difference does it make? It should be enough for me to state I can’t cope – I can’t picture a future with any sense of hope or light or optimism. The set of circumstances that led me here are irrelevant – I don’t need to be judged. I don’t need you to read this and think, “I’m stronger than that.” We all have a breaking point. You do too…

We all have a breaking point.

Remember that. We… All… Have… A… Breaking… Point… I found mine.

You know what stops me the most? In those really, really dark moments – when temptation is utterly overwhelming and every ounce of my being is focussed on (the perception of) eternal bliss and endless restful oblivion – it is those same people that I care for that make me want to stay.

Humans need connections. We are social creatures. This has been well documented and researched for decades. Have a look here, or here, or here… It is those social connections that keep me here. It’s hearing, “Are you okay?” or “Are you safe?” It’s a friend, seeing your pain and fearing your actions, that says, “I’ll be really upset if you die.” Or a friend turning up to sit with you – just to be sure. It is looking at my children and my husband, my dad and my grandmother, and knowing they have experienced enough pain and loss, and don’t need any more. And it is those same connections that offer a glimpse of hope and light into the future. People will give me purpose.

A friend convinced me I should start journaling and I was very resistant to the idea. But you know what? It helped.

It actually did help. And from those journals, I expanded onto this page. And it all helps. For anyone that doesn’t understand suicidal ideation, here is a window into some of my darkest thoughts… Perhaps it doesn’t resonate with you – but this has been my reality. I will be okay. I promise. But there are days when the dark calls – this is the war I fight.

6 August
Still very dark thoughts running through my head… I decided to commit suicide before my birthday. When I first decided this, I started feeling overwhelmed with emotions and had a shocking day. However, the more I plan and organise the more real this fantasy seems and the more control I feel I have. My biggest regret will be Dad. The thought of knowing he will lose another child absolutely breaks my heart. 

9 August
I don’t know what I want. I think that’s why I want nothing – just end now. Or asap. That sense of happiness and contentment and peace and serenity that people talk about, is such a distant obscure impossible concept that I don’t imagine I would ever have it. I’m tired of feeling ashamed. Actually, I am just tired! I am always so tired and I don’t even do anything! I secretly hope I’ll be diagnosed with a terminal illness so that will explain all my niggles and exhaustion and then I can die without causing the additional stress and grief that comes from having a loved one commit suicide… So. Freaking. Tired…

18 August
Future… Still struggling with that concept. Not sure if I want to start future plans – I’m incredibly fearful they’ll all fall flat. Or everyone will die and leave me. Should I accept the end is nigh and start planning for that instead? Everyone would be horrified I even have that thought… I don’t know if it’s normal? Do other people want to opt out all the time?! I am so tired… I keep saying that. But it’s true! When I picture my future at the moment it’s just an interminable journey of same same same… Running around looking after everyone until they die. 

24 August
I was thinking about connections this morning – or lack thereof… I have lots of connections with lots of beautiful people, but I feel myself keeping a big distance. I’m socially disconnecting and socially very careful – very reticent – to divulge too much of me to any one person. And I feel alone and disconnected even though I have beautiful people I know love and respect me! But I don’t have the courage or the strength or the energy to really connect any more.  I feel like I’m still in the place where I’m trying to decide whether to pull my socks up and move onwards and upwards, or accept what has been my normal comfortable, familiar place for so very, very long. Which hasn’t really been very healthy in hindsight. But it’s comfortable and familiar. And I’m very tired…

8 September
Okay – so if someone breaks into my journal, you’ll be pleased to know I’m feeling a tad better than yesterday… I still don’t have a lot of hope for the future. And I’m definitely still mind numbingly tired! But today, just for today, I can picture myself staying alive a little while longer. I’m just playing day by day, but I think I can manage a few more at the moment.

4 October
I feel like I’m functioning fairly well in the “real” world at the moment. It isn’t a monumental effort to chat with people or to do what needs to be done. I am enjoying gym and even (gasp!) have ventured into the arena of housework. It has been six months since I last touched a vacuum cleaner… I am determined to make it through a little longer. But in the meantime, all I want to do is walk out my front door and keep walking forever and ever and never come back. Just walk until I drop. Somehow that feels more acceptable than anything else…

16 October
I am struggling. I don’t know what’s going on – could be a myriad of things or just absolutely nothing, or absolutely anything really… But I know I feel sad, and despondent, and lethargic, and listless, and irrational, and moody, and sensitive and tetchy. And there’s no real reason. And there’s lots of reasons. I don’t want to do anything. I feel as though my “right” to suicide is being taken away – too much guilt and pressure and “this too shall pass” and “it will all get better – just wait” – and now I have to just be here and do… What? I don’t know… I dream each night of walking out the door and walking and walking and walking until I don’t know what… Probably the police find a strange middle aged woman freezing cold wandering along the highway and cart her off to the emergency department for “evaluation”. Where I would be mortified at having caused such a fuss. 

And before I finish, it is really important I leave you with some links. If – like me – you are sometimes overwhelmingly tempted, check these out. Then wait another hour or two. I did. We can do it together.

Australian Helplines

If you need help urgently, please contact

• 000 police, ambulance or fire, or go to Emergency Department of your local hospital

OR for 24 hour helpline support, call:

• 131 114                  Lifeline
• 1300 789 978      Mensline
• 1300 651 251       Lifeline Suicide Helpline
• 1300 224 636      beyondblue

International Helplines

United States

• Call 911
• 1-800-SUICIDE (1-800-784-2433)
• 1-800-273-TALK (1-800-273-8255)
• Text Telephone: 1-800-799-4TTY (1-800-799-4889)

United Kingdom

If you’re in danger, call 999 for an ambulance or the police

• NHS 111 Service: Call if you need non-emergency medical help
• Call 111 if you need medical help fast but it’s not a 999 emergency
• Samaritans 116 123 The Samaritans are a 24 hour confidential, listening service providing emotional support to anyone in crisis

Country Listings

http://www.suicide.org/international-suicide-hotlines.html

Support

• http://www.metanoia.org/suicide/
• http://www.suicide.org/if-you-are-suicidal.html
• http://suicideprevention.com.au/
• https://www.beyondblue.org.au/the-facts/suicide-prevention

NOT YOUR AVERAGE PATIENT

In 2008 I wrote a series of feature articles on Hospital Emergency Departments as part of my Masters in Journalism studies. This is Lucy Henry’s story, as a frequent flyer in the ED.

It is not every day you meet a woman with no ears and half a nose.

Lucy Henry is not an average patient in the Emergency Department [ED], with her prominent scars from self-inflicted burns. She is one of the forty thousand patients that present at the Royal Hobart Hospital emergency department each year. This 35-year-old blonde is confident and comfortable in herself, despite the life-altering events of the past 13 years. As she relaxes on her sofa, with devoted dalmatian Lottie nearby, she speaks frankly about her experiences as a self-confessed “frequent flyer” in the emergency department. Her first and only childhood experience of the emergency room is largely a blur, but for one memory – a piercingly clear vision of a woman in an adjacent cubicle having a vaginal examination.

“I can just see this woman with her legs spread and everything on display, and they quickly shut the door. It’s been an everlasting memory. I think I’ll remember that for the rest of my life.”

While riding her push-bike, eight-year-old Lucy fell and broke her leg. “Being a child they were all very nice to me… It’s funny, the biggest memory that I have of going into A&E is the light – because they have the lights on all the time. It’s like being in Guantanamo Bay or something,” she says.

The memory of a strange woman’s intimate moment didn’t deter Lucy from her ambition to enter into nursing. She graduated as an enrolled nurse in 1994. Not one to sit on her laurels, Lucy also hoped to study medicine but life had other plans for her. Like almost twenty per cent of the adult Australian population – more than two million people – Lucy was developing a serious mental health problem – Borderline Personality Disorder (BPD).

“I’d gotten into medicine as a mature age student and – it was weird, I didn’t understand what was going on. I was studying during the week and every weekend I’d either take an overdose or cut or something. They were only small overdoses – I didn’t really know what I was trying to do. I didn’t have much insight or understanding; I was just acting on impulse.

Borderline Personality Disorder affects around 300,000 people in Australia and around two-thirds of them are women. According to SANE Australia, the disorder is characterised by a lack of impulse control, intense insecurity, a sense of confusion and contradictory feelings, and episodes of self harm.

Lucy was resistant to being diagnosed with a mental health problem. “Borderline Personality Disorder is not a nice label to carry around. It’s got a lot of stigma with it and you get treated differently. A lot of people see you as an attention seeker and time waster and find it hard to understand self harm and why you would do that.”

While working at Calvary Hospital at the age of 22, Lucy experienced her first major episode. She slashed her wrists badly then presented to the Royal Hobart Hospital Emergency Department. Conscious of the stigma attached to mental health issues, and in particular to BPD, she refused a psychiatric consult while still at the emergency room. As Lucy was working at this time she was embarrassed by the whole situation. She remembers however, the nursing staff were kind and compassionate and kept her boyfriend – an ED doctor – away at her request.

“They say that on the whole people with Borderline Personality Disorder self harm as a way of tension release but it hasn’t been so much like that for me. It’s been more a way of me showing people how I feel on the inside, on the outside. I felt so horrendous and no-one’s been able to see it but if I cut myself or injure myself or take an overdose, people can see ‘oh she must be feeling really bad to do that’.”

Lucy’s nursing background, and her ‘frequent-flyer status’, taught her to communicate effectively with medical personnel. Becoming knowledgeable about your own health and available treatments is definitely a plus. As Lucy vividly recalls one of her most unpleasant experiences at the ED, it is clear experience is a great teacher.

I’d cut all up and down both legs and both arms so they couldn’t stitch me up with local anaesthetic. [Too much local anaesthetic adversely affects heart rhythm.] Rather than take me to theatre and give me a general anaesthetic, they came and said ‘we’re going to staple you up’ and they did it with no anaesthetic. No pain relief – nothing. It was horrendous. They didn’t take me into the theatre unit where they usually do, they just stitched me up there in the cubicle. I don’t remember the pain, I just know it was horrendous. The stapler they use to staple you up, it isn’t that much different to your general, every day stapler.

This has happened on numerous occasions for Lucy. When asked how the pain of this procedure differed from her own episodes of self-harm, she says, “A lot of the time when you cut, you’re in a dissociative state so you don’t necessarily feel it as much.” Medical personnel dealing with Lucy on a nearly weekly basis over the past 13 years describe feelings of intense frustration. Lucy thinks the procedure was done this way because she’d been at the ED so frequently, with so many self inflicted wounds, the hospital didn’t want to waste valuable resources on someone who could presumably tolerate the pain anyway. “I guess they felt if I’d done the cuts myself I could bear the pain and also I think they felt it would be a deterrent. But all that happened was I got to the point where I stood up for myself and I said either you give me a general anaesthetic or I’m walking out of here right now.”

Most of us will never experience anything so distressing. For many the greatest complaint at the emergency room is the waiting time. In 2008 we’ve come to expect instant responses to most of our requests in life and waiting up to eight hours in an emergency department – at a time when many people are fragile and vulnerable – can be distressing. Lucy has a simple solution: “Always take a good book with you when you’re going into the Royal.”

Lucy is really quick to point out that while some of her experiences are not so positive, that is not how she feels about the emergency health services at all. “I know a lot of what I said has been negative, but that’s not fair to the people that work there. I have also been shown a lot of compassion. Like last time I went in, there was a paramedic and I had my dog with me and she came ‘round to where you wait and sat down with me. I was quite distressed, not wanting to be treated badly.”

Lucy’s deformed lips struggle to inhale her cigarette as she continues, “I was talking to her about it. She has diabetes and she said, ‘look you can’t help it any more than I can help my diabetes.’ She stayed with me until I went through and they were all very compassionate and very kind. I know there’s been times when I’ve harmed myself and I wouldn’t have expected them to have gone to the measures they went to, to keep me alive, but I’m glad they did.”

Anyone can have a life-altering moment in a heartbeat. For Lucy, this moment came in 2003. She was 29 and living with her parents, no longer able to cope alone due to intense periods of self harm. On a clear, warm January evening, Lucy finished dinner with her parents then went outside, grabbed a tin of kerosene, poured it over her head and set herself on fire.

“It just got to the extent that whenever I heard of a new way of self-harming I thought ‘oh let’s give that a try.’ I just had lost all impulse control. I had no thought of what the consequences of my actions would be. It wasn’t that I was trying to kill myself. I didn’t know what the results or consequence would be. I just didn’t think about that,” she says.

As she describes the unfolding of the events, it’s almost comical – like Kenny from South Park experiencing one of his weekly deaths. “Mum and dad saw me going across the kitchen window on fire. I went out to the lawn and I can’t remember it actually hurting, I’d gone into shock. My hair had just caught when dad got the water on me.”

It’s hard to picture the horror and panic Lucy’s parents must have experienced.

“I tried to roll. I can remember heat but not pain. There was a lot of pain afterwards but not at the time. Dad got the hose then I started to get a bit foggy after that. Mum [a nurse] was taking my clothes off so they wouldn’t stick. I got very cold because basically I had no skin left so there was nothing to keep the heat in. Mum got a sheet to keep the heat in.”

Lucy was still upbeat and cracking jokes as the ambulance arrived at their Sandy Bay home about ten minutes later. “They brought the stretcher in and I got myself on the stretcher. They wanted to get a vein for IV access and I basically said ‘oh good luck’ because I’ve always had very bad IV access – I’ve got very deep veins. “

Lucy remembers little else but is intensely grateful to the emergency service personnel – ambulance officers, nurses and doctors – for their efforts to keep her alive. “It’s a positive experience in that they did everything they could to save me. I’m grateful. I only had a ten per cent chance of surviving. They did a good job. They told mum and dad that I would die.”

“Because I’d put the lighter to myself down here,” Lucy explains, pointing to her navel, “all the front of me was badly burnt. I had very bad inhalation burns – I was just looking down and breathing in these hot fumes. I’m very lucky because a lot of people with my sort of burns lose their hair and have to wear a wig or something. I lost my ears though – both ears are gone. And the end of my nose. I was also very fortunate that only the back of my hands was burnt and I’ve still got the touch sensation on the front part of my hands. And also very fortunate not to lose fingers because people often lose fingers. I haven’t got full range of arm motion, my arms are quite limited … this shoulder’s fused basically,” she says, indicating her right shoulder.

Setting yourself on fire is an extraordinary event. “I regret it very much,” she says. “Except that I’ve learnt a lot through it – about consequences. I wish that I could have learnt that without having ended up being disabled to the extent that I am and with the disfigurement that I’ve got. But if it hadn’t have happened maybe I wouldn’t have got Lottie and this flat. I love this flat. I love this location. A lot of things have led on from that. I would prefer to have not gone that way but there have been positives. Positives and negatives. There’s always a lesson to be learned.”

For Lucy, life goes on. While her nursing career is behind her, she has developed a passion for writing. She’s started collating her experiences of the past 13 years and hopes to return to university to study journalism and writing. She is President of the Aware Dogs Tasmania association and is currently building a small business in public speaking.

Lucy’s also taken up singing – something long forgotten from her days as a schoolgirl at Collegiate. A member of the newly formed Choir of High Hopes in Hobart, Lucy is featuring as a soloist on their first recording. Her ears may be gone, but her voice can now be heard by all.

Lucy succumbed to her illness in October 2013, dying as a result of suicide.

TOO GOOD TO EAT

I’m 50 years old.  I’ve raised a bunch of fantastic young men. Been married 24 years. I’ve witnessed birth. And death. Travelled in foreign countries. I have several university degrees – across two disciplines – and worked for 36 years, in multiple capacities. I have a house, a car, and a cat. Just like an adult, right? Like a middle-aged woman who’s lived a bit and statistically has a bit more to go.

I also have an eating disorder.

It’s an incongruous label to have at my age. I’m too old to have an eating disorder – I should have arthritis instead. Eating disorders are for young girls – obsessed with physical appearance and being pretty for the boys. Girls who care more about vanity than sanity, and think being fat is a greater tragedy than any of the seven deadly sins (pride, envy, wrath, gluttony, lust, sloth and greed – in case you’re wondering). But this perception of the eating disorder demographic feels wrong. I have no doubt most eating disorders have origins in those teen years, but an awful lot of us continue well into our adult years – even middle age apparently – and in my experience, it has absolutely nothing to do with looking pretty for the boys. I can’t speak for anyone else who struggles with any of the many varieties of eating disorders, but for me, every aspect of my existence is coloured by angst around physical appearance, disordered eating behaviours, and my worth as a human being.

I will never attain the impossible standard I set for myself.

have been bulimic, on and off, for 30 years – although I developed anorexic behaviours during a breakdown earlier this year, and was (ludicrously) thrilled to bits. But my disordered eating behaviours began way, way earlier than my 20s. In fact, I have no recollection – whatsoever – of having healthy eating thoughts and behaviours, or positive body image and self-esteem. I’m (supposed to be) all grown up now – so casting blame is pointless – I am old enough to take responsibility for my beliefs and actions. But life is rarely simple. Developing my eating disorder was like a jigsaw – a whole gamut of pieces came together to form disordered thinking and maladaptive behaviours. This is how my personal puzzle evolved.

My physical appearance wasn’t good enough

My mother was a tiny and very beautiful woman – well tiny and beautiful to me. And I was a big baby. A BIG BABY! I weighed in at 10lb 10oz – a big, fat, healthy blob of baby girl. This scared (and disappointed) the living daylights out of her, and for a woman deeply, deeply concerned about physical appearance, a fat baby (and a girl no less!) was not good news. At four weeks old she tried putting a positive spin on my “weight problem”, with her first entry in my baby book:

She has red hair, blue eyes, lashes darkening. Is beautiful now, though all her double chins are marring her beauty at present. We love her though. We will have to slim her down soon, I can see that.

And she spent the rest of her life trying to slim me down one way or the other.

I look “different” to the rest of my family. Mum was petite with brown curls and traditionally beautiful features. Dad, and my two younger siblings, had tall, slim, athletic builds, and jet black hair. I was curvy. I was curvy at birth and I’m curvy now. I was tall, with boobs and hips, and no amount of starvation could ever have given me the Twiggy look my mother so desperately admired. My red hair and pale freckly skin just added to the horror. At 16 after telling me I needed a breast reduction, she said, (and I quote – because the words are etched into my psyche), “If you could just lose a few pounds dear, you’d start to look quite attractive” – translation in my teen brain, not only are you fat, you’re ugly too!

Now don’t get me wrong – my mother had many fantastic, redeeming qualities, and I mourn her death every day of my life. But unfortunately, her concern and fear for my weight and appearance, taught me my value was in aspects of myself that should hold no value. Nothing has changed – I still feel fat and ugly. And despite knowing better, it still seems important to other people. Heart trumps head, every day of the week.

Nothing about me was good enough

I had a very specific role in our family – as did my siblings – I was responsible. I had to be good, and clever (not too clever – nobody likes a show off), and strong enough to care for everyone, (but for god’s sake don’t show any emotion because nobody has time to deal with all that attention seeking). These lessons weren’t articulated in words, but in actions – in the reinforcement of “correct” behaviours, and the endless criticism of anything considered unacceptable.   As a child, I tried so hard to be responsible and good and to do anything to make my mother proud – in fact despite the absurdity of it, I am still seeking her approval seven years after she died!   But the main reason I know I wasn’t good enough? My first day home from hospital, holding my newborn and overcome with love and wonder, she looked at me and said, “All my children have been a tremendous disappointment to me.” I’m not sure of her intent? I think she was probably trying to say my perfect baby will disappoint me one day. That all the hopes and dreams I have, won’t unfold as anticipated. What I heard was, “Nothing about you has ever been, and will ever be, good enough.” I left the room, speechless.

Emotions are easily hidden and numbed with food

So, what does that have to do with an eating disorder? Nobody gets pleasure from binging and purging and starving. Or spending every waking moment thinking about food – feeling horrendous guilt and shame at every morsel that passes their lips and trying to develop strategies to avoid eating altogether. An eating disorder is simply a very bad way of coping. Everyone with an eating disorder, is trying to cope with something and there are common threads for most of us – depression and anxiety, perfectionism, and over-developed sensitivities to name a few. But at the end of the day, the binge-purge-restrict behaviours deaden everything. If you believe in your heart and soul you are not good enough – that your inherent value is in your looks and what you do for others – and if you have been told all your formative years nothing about you is enough – you will find a way to numb that inevitable self-loathing. Some might use alcohol, illicit drugs, sex or gambling. But some people use food – too much or too little. And I’m one of those someones.   I became so adept at burying emotions with food, I no longer felt them. Ever. I could wear a mask and offer the world a face filled with joy and contentment – eyes lit up, cheekbones high, and a smile from ear to ear. But the underlying fears – of failure and not measuring up, or being found to be a fraud, of getting fat again (the greatest fear of all) – they are easily buried in a bowl of cookie dough, a heaving torso over the porcelain bowl, or the haziness that comes with not eating anything at all for three days straight.

My food was not controlled by me 

As an adult, I control when, where, what and how I eat. But as a child, my mother controlled what I ate (or in her absence my grandmother or sister would step in). Desserts were sometimes forbidden (but not so my skinny siblings). I was expected to finish every bite (think of the starving children in Ethiopia!), but never ask for seconds, overeat or look greedy. Sometimes I was cautioned to diet, while skinnier folk were encouraged to feast. Even eating out was not a freedom – choose a small serve of the healthy option. And reminder – don’t eat dessert, no seconds, and I’m watching you. My eating behaviours always seemed to be noticed – and commented upon.   Now I’m sure all that sounds normal (or not? I don’t have perspective) but when coupled with a learned emphasis on the importance of weight and beauty, and a subconscious need to numb everything, abdicating control over something that gave me such joy, left me desperate for the day when I could eat what I want, when I want and where I want. And trust me, that day came! Despite having spent 32 years outside the family home, I still feel a need to “let” myself have a treat, and deprivation is a constant gnawing hunger in the pit of my stomach.

Positive reinforcement of negative behaviours

If you want a child – or a monkey, or a cat or any kind of teachable animal – to learn to do something, positive reinforcement is a great way to do it! And the strongest positive reinforcement of negative behaviours I experienced, was compliments any and every time I lost weight. Rarely do people ask how weight is lost before they compliment – it usually goes like this: “Wow! You look great! How did you lose the weight?” And it would be a brave young woman indeed who confessed to purging, laxatives and over-exercising, in a desperate attempt to fit into society.

The greatest success I attained in losing weight was purging – which started around age 22 for me. I have no recollection of that first time, or why I thought it was a good idea. But I learned very, very quickly that it worked – despite the fact that at that point in time, I was not (and had never really been) overweight. Prior to that I’d lost weight on and off through sensible diets, non-sensible diets, ridiculous diets, unsafe diets, stupid diets, diets in magazines, in books and retold by friends (no google internet searches in the 1980s!) And of course put the weight back on – plus that little bit extra – every time the diet inevitably ended.

Negative reinforcement works too though! Mum offered me money to lose weight (age 12), sent me to weight watchers (age 15 – with a BMI of 21), and pointed out how “large” I was compared to my slender siblings. I had a very skinny friend when I was 12 who always wanted to know what I weighed then laughed at me. I was deeply conscious of being bigger than most of my friends (I was a buxom lass). And I routinely saw my sister praised for her beauty and size, when it was evident I didn’t – and could never – match that success.

In adulthood, I lost weight through much the same means. And gained it back again faster every time. I have gained and lost 35kg several times now. I have yo-yoed my weight so often the string is about to snap… I’ve tried 12 step programs (highly recommend!) and groups and clubs and therapy and everything that internet searches have turned up. Five years ago I resorted to having a gastric lap band put in – as I didn’t believe I would ever successfully lose weight and maintain that weight loss. It was pretty jolly successful – I will admit that! But it also brought a full revival of my previous bulimic behaviours. For me – the lap band became surgical bulimia. And that is the nightmare I am still living. At age 50, I spend most days flipping between binging, purging and restricting.

I am now, however attempting to build my recovery puzzle – and I need a lot of pieces to come together! I am currently under the care of a very fine set of health professionals, and I continue to seek support and information through the internet – sometimes information that helps, and sometimes information that hinders. But I’m still here! I talk to friends and to other people with the same affliction. I keep plugging away in the vain hope that one day I can “eat like a normal person”. I don’t even know what that is…

If you’re out there, developing an eating disorder or firmly entrenched in one, here’s a couple of things I have learned when it comes to that recovery puzzle – and I write these as a reminder for myself to just keep going:

First, change now. Right now! I’ve done this for 50 years – that’s a lot of unlearning! I wish I’d known at 15 what I know at 50 (okay – I’m sure we all wish that!) And if you too have done it for 50 years? Well let’s not make it 51 huh?!

Second, you are not alone. Nothing we ever do in life is so shameful we can’t tell someone. A friend, a colleague, a family member, a health professional, a counsellor. Someone! And if that someone lets you down – shame on them! But pick another someone. Silence equals shame – we don’t need more shame.

Next – journal. Write your little heart out as often as you can. If you can’t bring yourself to write, draw. Use pinterest and instagram or whatever the next social media newcomer is. Record, investigate and acknowledge the pain of your journey to date, and the mystery of your story yet to be told.

Finally, keep seeking resources. There are great internet sites all about eating disorders, depression, anxiety, and any other affliction that has led you to a life of such self-hatred – go read those sites, as many as possible and remember to always look for the similarities and not the differences. There are also loads of awesome reading materials (I’m currently reading “8 Keys to Recovery from an Eating Disorder” – most fantastic written resource I have found so far!) There are support groups (try OA first – it’s free and pretty amazing). Medical professionals. Counsellors. Organisations. Heaps of other things no doubt… Keep seeking. Fall over nine times, stand up ten. It is all going to be worth it – so I’ve been told!

REMEMBER

Today is the anniversary of my mother’s death. It is seven years since she passed away after a ten-year battle with breast cancer. Every death anniversary – and I’ve collected a few dead people now – leaves me feeling very melancholy and reflective.

I had never watched anyone die before mum slipped into a coma, and the painful truth is, it’s not a pretty sight.

We often hear it’s a privilege to be with someone at the end of their life and I found this to be true – but it is also very distressing. I never expected to embark upon such a journey of grief and emotional trauma and it all began with mum’s cancer diagnosis.

There are three deaths: the first is when the body ceases to function.
The second is when the body is consigned to the grave.
The third is that moment, sometime in the future, when your name is spoken for the last time.
[David Eagleman]

We always had a difficult and fractious relationship. Very difficult in fact. But over the years of her illness and eventual death, our relationship slowly changed – and completely turned around. The vivacious, fussy, incredibly exasperating woman I grew up with – the woman who would wash clean clothes and clean dishes – could no longer brush her own hair (what was left of it) or make her way unaided to the bathroom. She had become utterly reliant on other people for everything. Absolutely everything. In the last year of her life I visited at least weekly– doing housework, bringing food, running a bath, washing her hair. I remember vividly coming in one day to see her wearing red lipstick – the ambulance officers were on their way to the house. She looked at me and said, “Do I look silly?” I smiled and told her no, she looked beautiful. But inside I realised at that moment, our roles had completely reversed – I was now parenting my mother.

To help me think through and cope with the emotions I was going through, I started writing in my (previous) blog. Here is a little personal journey of the final days caring for my mother.

5 November
Mum’s imminent demise is playing on my mind – it’s hard to watch. Very hard. She’s now almost bed bound and said a few days ago she hopes not to last more than two months as she can’t cope any more. I asked her doctor how much time there is left and she indicated her time is unlikely to be measured in months. But then again, a stubborn streak runs in my family and we can hang on for a long, long time – most of my great aunts survived well into their nineties. But now my greatest hope is that perhaps mum will see Christmas.

6 November
She has been in and out of a delirious state recently, which is most likely related to an infection of some type and apparently, infections are likely to become more frequent over the coming weeks. Yesterday she looked me in the eye and said, “Are you expecting a baby? Someone’s expecting a baby.” Nobody we know is expecting a baby…

Which leaves me with two dilemmas. First, do I invite relatives to come down as soon as possible? Do people want to be told she’s dying? Do they want to come and see her? When I speak to people I never know if I’m sounding like a drama queen or doing the right thing. And will mum even recognise them by next week? She may become completely lucid again. But she may not.

And my second dilemma is how much should I involve my children? Should I bring them over every few days to slowly witness her decline? Should I let them be there at the very end if that is possible? I have a romantic picture in my head of her being surrounded by her children and grandchildren at the moment of her death. But is that a reality? Should I subject young children to such an experience? I just don’t know. For now, I’m taking it one day at a time and hoping to be led by those more knowledgeable than I. But I’ve also noticed everyone in the family looks to me for guidance. I ring the carers, the family, the friends, and I organise everything. For everyone.

9 November
On Saturday, I organised for a respite carer to stay overnight so mum’s husband could get a night’s sleep. It is her husband I’m most concerned about. He appears to be on the verge of a nervous breakdown. You know that painting, The Scream? He says he feels like that. Yet when the doctor discussed anti-depressants he said she was talking psychobabble and refused to listen. So somehow, I must help him through without him falling apart. And without me falling apart!

But mum has looked MUCH better the past few days. The delirium is gone – which may have been related to too many drugs, taken by mistake. She’s been eating a little at most mealtimes and has even been out of bed to watch television in the lounge room – two days in a row! So, things are greatly improved from last week.

15 November
At 10:35 am on Friday 13 November 2009, my mother died. She was 65 years old.

Although she had battled cancer for nearly a decade, and her health in recent months and weeks had deteriorated to the point she was bedridden, her death still comes as a shock.

Mum was diagnosed with breast cancer ten years ago.

They found a stage four tumour, the size of a grapefruit, ready to burst through the skin. She had a mastectomy and they discovered lots of cancerous lymph nodes at the same time. They were removed and she then underwent chemotherapy and radiation therapy, on and off, over a number of years.

While her treatments were quite drastic and caused significant ill health at times, she also experienced lots of joy and great life moments over those ten years. She travelled to Scotland, Britain, Paris and the US, and had the time of her life. She fell in love with Paris and with Provence. She met her husband’s extended family in Scotland and Michigan and she lived for a time in Devon. They were the best of times.

Over the past few years the cancer spread to her lungs and more recently to her bones. Her health slowly deteriorated and she spent the last couple of years continuously hooked up to oxygen machines. Throughout this year the pain increased in her hips and legs as a result of the bone cancer.

Despite all this, she took it upon herself to sell up her home and move closer to me and her family. Most of us thought this an impossible task, that she’d never manage it in the condition she was in. Needless to say, in February all her worldly possessions were packed up (by the world’s worst removalists…) and she relocated here with her husband.

They bought a renovator’s delight in a superb position. We all thought she was utterly mad – with so little energy and not a lot of time left – yet she took on the task of a massive renovation anyway. The house had two levels. Upstairs she had completely gutted and a new kitchen, bathroom, living areas and bedrooms built. Downstairs (aka the dungeon) was a self-contained unit with bedroom, kitchen, bathroom and living areas – but all underground with very few windows. She lived in the dungeon for three months before finally, finally moving into her beautiful newly renovated home.

I spent hours and days with her, unpacking boxes, rearranging the antique teapots, vintage dresses and Russian doll collection. As the house became more finished, mum’s health got worse and worse. She had weeks at a time when she left bed only to go to the toilet. She said to me several weeks ago she hoped not to last too much longer as the pain, breathlessness and anxiety were more than she could cope with. Up until her very last days, she sat up in bed making plans for different things on the house. The roof is now insulated. The flyscreens arrive soon.

Wednesday, she was in great spirits and really energetic – bossing everyone around and enjoying TV.

Thursday, she woke with the worst pain she’d ever experienced and was instructed by palliative care nurses to take more frequent doses of morphine. Most of Thursday she was pretty odd and very out of it, which I thought was the morphine. She slipped into a coma that night. I had spent all day with her and then came back in the evening to help her husband move her into a more comfortable position. As we moved her down the bed, her eyes popped open and she looked at me and smiled. I never saw her awake again. Later that evening, in a semi-conscious state, she reached out to her husband and mouthed repeatedly, “Thank you my darling. Thank you my darling.” She tried to reach out and put her arm around his neck but didn’t have the strength. She slipped into a coma.

Friday morning, I went over with my husband and three young boys, before her own 91 year old mother arrived, saying, “It’s okay, mum’s here. Your mother is here”. Mum’s breathing was becoming increasingly ragged. The boys kept busy, moving the piano, baking a cake, rearranging furniture. The day was glorious, still and sunny, and the garden in full bloom. We all spent time with her, saying goodbye, holding her hand, kissing her forehead. I spent most of the morning in bed with her, holding her hand, saying I was sorry for everything I’d ever done wrong and telling her I loved her – watching her face contorted into a permanent mask of fear and pain. At one point her eyes popped open for a while and she looked deeply distressed, but then gradually they relaxed, her pulse slowed and eventually her breathing stopped. At the very moment of her last breath we were all running around looking for cotton buds and water to try and keep her mouth moist. None of us were there for her last breath – something I deeply regret. Her passing seemed incredibly peaceful in the end. Her fingers, dark purple due to lack of circulation for as long as I can remember, became white. I can’t believe my mother is gone.

28 January
Today is mum’s 66th birthday. She always feared getting old – and now that she’s gone, I guess she won’t. Not any older than 65 at any rate.

Despite our fractious relationship over the years, I really miss her. My mum was like a good cheese – she improved with age. Really, really improved with age!

She was a nervous, anxious kind of person and liked everything to be just so. She found parenting three hyperactive, stubborn and difficult children a daunting task, but she was a fantastic grandmother. She absolutely adored her five grandsons and one granddaughter. When searching through photos after she died, I discovered the vast majority taken in the past fifteen years are with her holding a grandbaby. Or teaching one to knit or cook or make lavender body lotions.

She was a beautiful young woman and always considered physical appearance very important. Sometimes I found her obsession with the trivial frustrating, but it meant she always lived in an immaculate home, had beautiful clothes and beautiful things. She had a passion for Russian dolls, flowers and teapots. Over the last ten years of her life she discovered eBay and started purchasing all the beautiful things she could find. She became an expert on vintage dresses, exquisite fabrics and beautifully jewellery. And teapots. Always lots of teapots! She had countless teapots at her home – Wedgewood and willow pattern and silver and all sorts of fancy stuff I can’t name! If you ever needed a cup of tea, mum’s house was the place to go!

She always loved presents – Christmas and Mother’s Day and birthday presents. She adored giving and she loved to unwrap gifts. Always a big happy grin on her face when she was exchanging gifts. I have a little wooden carved birthday cake wall decoration – given to me by my mother – all painted bright yellow and blue with bright pink candles. I took it to mum’s graveside and left it with a small bunch of flowers. Happy birthday mum.

I still find it hard to believe I have no mother and I cannot fathom how my grandmother copes without her daughter. Actually, I know how she copes. My grandmother is not one for funerals or graves or sentimentality. She creates places and little memorials at home to remember loved ones. She has a special magnolia tree in a pot that is a memorial for mum, surrounded by things mum owned. She also recently purchased a cd of songs she listens to frequently in memory of mum. This one made me cry – it was read out at her funeral:

TRUTH

The recent controversies and hate filled rhetoric of the 2016 American presidential elections, reminded me of an essay I wrote in 2006 as part of my journalism studies. We are all convinced our beliefs are factual and true, yet those beliefs have come from something we’ve read or heard somewhere. It is a timely reminder that not everything we read is true, and even those things that are, have a significant bias in them. Writing in a completely truthful, unbiased and ethical fashion is no easy task for the most experienced journalist – let alone your average blogger or facebook user – and reading without bias is apparently even more difficult!

Philosophers pontificate it endlessly and scholarly journalists debate it ad nauseum, but what is truth?

And how can we get to the heart of it?

As the profession of journalism descends deeper into the realm of entertainment, it is easy to wonder if boundaries between fact and fiction are blurring.

Historically, journalists have been responsible for bringing news to the public: news about wars and accidents, births and deaths, the inner workings of governments and political bodies, and events in our communities. However, as technological advances have made news more accessible and immediate, the ability to sell a story (whether hard news in a daily paper or a book-length feature delving into an area of public interest) has begun to rely more on entertainment value than fundamental value. Many people will glance through headlines in a newspaper to keep up-to-date, but reading a lengthy feature or a non-fiction book requires a significant time commitment that the writer must be aware of before they even begin writing.

The media are heavily reliant upon advertising revenue, and many people believe advertisers can influence content in the wide stream media. Journalists are dependent on the media to publish their work, either in their capacity as an employee or as a freelancer, so when embarking upon a major work of literary journalism, consideration must be given to target audiences and whether the project can justify the time and expense gone into its production.

Literary journalism has existed since reportage began – John Carey’s Faber Book of Reportage contains hundreds of literary style descriptions of historical life, from the 430BC plague in Athens through to the 1986 fall of President Marcos in the Philippines. The term literary journalism – also creative non-fiction or narrative journalism – is relatively new, although at times it is disputed and controversial. Wikipedia, while not always the most accurate source of information, offers a simple and succinct definition of literary journalism as a “genre of literature… which uses literary skills in the writing of non-fiction. If well written, it contains accurate and well-researched information and also holds the interest of the reader. It allows a writer to employ the diligence of a reporter, the shifting voices and viewpoints of a novelist, the refined wordplay of a poet and the analytical modes of the essayist.”

In contemporary Australia, we find literary journalism in magazines such as The Monthly or Vanity Fair, in the feature sections or magazines of prominent newspapers such as The Sydney Morning Herald or The Australian, or in books published specifically for the purpose such as John Bryson’s Evil Angels or Helen Garner’s The First Stone.

Literary journalism exists to give meaning and analysis to hard news or to areas of social interest.

Jenny McKay distinguishes between literary and journalistic writing in The Magazine’s Handbook: “Literary writing is creative, imaginative, of enduring quality and written by a human being blessed with some mystical quality. Journalistic writing by contrast, is mundane, dull, lacking in creativity and written by a tired cliché-monger who has no sensitivity to the nuances of language.” This seems somewhat harsh to the frontline, hard news journalist, when in reality many have crossed from one genre to the other. Renowned journalists such as Tom Wolfe, Truman Capote, Helen Garner and even novelist Mark Twain are just some examples.

Mark Twain is quoted as saying, “Get your facts first, then you can distort them as you please,” later paraphrased as the journalists’ mantra, “Never let the facts get in the way of a good story”. Google this phrase and you find yourself overwhelmed with quotes from every corner of the globe. Yet establishing the truth of this phrase alone is no mean feat. The quote first appears in Rudyard Kipling’s From Sea to Sea and other Sketches as part of an interview with Mark Twain. But is Mark Twain really the originator of the quote? Probably – but there is no way to know for sure. Only Mr Kipling and Mr Twain can be certain of the facts during that interview. As readers, we can only but trust that what we read is accurate.

Establishing trust with a reader is important for any writer – but establishing that trust is doubly important for journalistic writing. When we read journalistic pieces in a literary style, we have the opportunity to go into the story – to empathise with characters and to relate our personal experiences to the storyline. This is considerably different from other types of journalism in that it presents us with details of emotion and expression, which can only ever be purely subjective. News reporting primarily involves the reproduction of facts in an inverted pyramid style, to give the reader the bones of the story. Literary journalism takes the reader on a much more subjective journey but reporting the truth is still of paramount importance.

The purpose of each journalistic style is quite distinct. When we want to know what is happening in the world, we want hard news, not in-depth analysis – a quick list of facts and some substantiated comments. When we want to know more about an area of interest, we need more than facts. We want background materials, information on all the comings and goings of interested parties, descriptions of people and emotions, and an overall picture of the events surrounding the topic. This literary style can leave the writer wide open to the accusation of confusing personal opinion and truth.

There is much written about the conflict of personal opinion and truth.

Many argue that truth is merely an interpretation of facts by the onlooker – and there are countless ways to interpret the witnessing of a single event. A sexual assault, for example, may be considered something completely different depending on whether you are the victim, the perpetrator, or an eyewitness to the event. An eyewitness to the event may interpret things differently depending on their relationship to the people involved, and their own experiences and knowledge of sexual assault.

Australian courts of law rely on witnesses to tell “the truth, the whole truth and nothing but the truth”, and when those truths are conflicting, the court makes a judgement. However, a court of law has the advantage of prosecution and defence presenting facts for both sides of the story with as much strength and credibility as they can muster. A journalist producing an investigative, literary style, piece may not have the same resources to see both sides in a balanced fashion, and even if they do, they may not give both sides of the story equal coverage because of a preconceived prejudice. While this is true of all journalists, prejudices can become more obvious and magnified when producing a comprehensive literary work.

The ancient Greeks debated the concept of objectivity, and most philosophers seem to have come to a gentleman’s agreement that there is no absolute truth or objectivity. In The Journalist’s Moral Compass,Knowlton and Parsons state that, “If truth cannot be discerned, and may not even exist… then all points of view become equally valid and the best one can do is simply to argue well.” So, if truth and objectivity are so elusive and subjective, how can a reader be sure of anything they read?

The paramount consideration for a writer is to develop a sense of trust with their readership.

This is not always easy to do. Trust assumes a prior relationship, yet all of us must begin somewhere. There is also an added complication – when we catch the media lying, there is prompt coverage and much discussion. The field of journalism has at times been subject to substantive lies – such as Janet Cooke’s fabricated tale of an eight-year-old heroin addict in Jimmy’s World (published by The Washington Post in 1980), or James Frey’s memoirs, A Million Little Pieces (2003) – which were found to be partly fictional. These examples can give the illusion that falsehoods are more common than they really are.

There is also the reality that some readers accept what they read more readily than others do. How many times have we heard a celebrity is pregnant or another celebrity’s marriage is over? The public often believe blatant lies in tabloid journalism, and not everyone can distinguish between highly ethical publications and those that are not ethical at all. It is often joked that journalists are as dishonest as real estate agents and used car salesmen, yet the public must still rely on their sense of trust in the media for the knowledge they require of the world in which they live.

Respect for truth and the public’s right to information are fundamental principles of journalism. Journalists describe society to itself. They convey information, ideas and opinions, a privileged role. They search, disclose, record, question, entertain, suggest and remember. They inform citizens and animate democracy. They give a practical form to freedom of expression. Many journalists work in private enterprise, but all have these public responsibilities. They scrutinise power, but also exercise it, and should be accountable. Accountability engenders trust. Without trust, journalists do not fulfil their public responsibilities. Alliance members engaged in journalism commit themselves to: honesty, fairness, independence, respect for the rights of others.

These are good principles to strive towards, and we all hope journalists ascribe to these ideals. As a reader however, how can we ascertain the integrity of a writer’s work?

First, we need to consider what exactly “truth” is. Most of us consider ourselves truthful in our lives and our dealings with others. Search the web or any dictionary for a definition of truth and you see the words “fact” and “reality” endlessly appearing. Yet fact and reality can be subjective. While we can all agree that dogs have four legs, one person’s reality may state as fact that dogs are terrifying creatures, while another might claim the dog is humankind’s greatest friend. Both realities are factual and true to the individual concerned. When a journalist tackles a major piece of investigative or literary journalism, they are attempting to share the truth of a story with the readership, but that truth is always coloured by the author’s personal experiences. In writing a literary piece, a journalist may use a wealth of material to convey their story to the reader. Subjective interpretations can inadvertently creep into their observations in all sorts of ways: the description of the physical environment, selection of which quotes to use, descriptions of people’s looks and mannerisms, the emphasis or lack of emphasis upon a particular viewpoint, and the inclusion or omission of certain facts that may seem relevant to one person but not to another.

A misrepresentation of the truth in journalism might be an outright lie, a lie by omission, or a truth that is out of context. Then each of these misrepresentations can have different implications. A typing error or misheard quote can lead a journalist to mistakenly write an incorrect name or some incorrect detail of an event. This type of lie is often irrelevant and easily corrected. However, if the writer chooses to omit pieces of information that put an argument in context, then the intent is to deceive. If a reader starts to feel the author is being deliberately deceptive or dishonest then trust is broken and they may soon lose interest in the material.

Barry Allen’s Truth in Philosophy quotes Emerson as saying, “Truth is such a flyaway, such a slyboots, so untransportable and unbarrellable a commodity, that it is as bad to catch as light”. Allen continues, however, exploring why philosophers are fascinated with the pursuit of this elusive truth: “because it is sublime, divine; because it is an essential part of the best kind of life; because it is useful, instrumental, empowering; because it distinguishes knowledge from opinion or mere belief…”

It is this latter belief that is most at loggerheads with literary journalism. Distinguishing knowledge from opinion and belief is very difficult indeed. Some might consider a list consisting purely of facts – with no emotion and no explanation – as being as close as we can get to pure truth. Yet a list of facts can be very distorting. Consider the following brief summaries of famous events:

• No survivors in plane crash
• Surprise bombing at US Naval Base
• Three dead in single vehicle crash
• Gunman causes mayhem

Each of these events was somewhat more dramatic when put into context: 270 people died in the Lockerbie air disaster, the worlds’ worst terrorist attack until September 11, 2001; the attack on Pearl Harbour in 1941 claimed the lives of 2400 Americans and heralded the entrance of the US into World War II; Princess Diana died with Henri Paul and Dodi Fayed during a high-speed car crash in a Paris tunnel in 1997; and Martin Bryant killed 35 men, women and children, injuring a further 23, in 1996 at Port Arthur (Tasmania), making history as the world’s third worst peacetime shooting at the time.

Conversely, a list of events can seem more than it truly is:

• Three great men dead in 12 days
• Anti-terrorism package to arrive in post
• Nearly 200,000 Iraqis dead

Famous Australians Peter Brock, Steve Irwin and Don Chip recently died within a 12-day period – sad but coincidental. The much-maligned anti-terrorism fridge magnet campaign started in February 2003 and became all hype and no substance. The death toll for all casualties in the Iraq war is a slippery figure to find. One study conducted by the John Hopkins University claimed the estimate of Iraqi deaths since the war began in 2003 is somewhere between 8000 and 194,000. Obviously, the difference between the two figures is huge and where the truth lies is anybody’s guess. The coalition deaths are listed as being 2896 at CNN’s website, while the Iraq Body Count website claims as many as 46,307 Iraqis have perished. These figures are all wildly variable and perhaps only history will cast a more accurate light the true human cost of the Iraq war.

If an article wants to be credible, it must be truthful, and part of that integrity comes from demonstrating a balanced view. Good literary journalism has many balanced and truthful examples: Mark Bowden’s Black Hawk Down; Truman Capote’s In Cold Blood; Gay Talese’s Frank Sinatra has a Cold; and Frank McCourt’s Angela’s Ashes. These works have been reviewed by their peers and the public and become are generally accepted as being well written, unbiased and truthful. Although obviously even these examples will continue to be analysed and judged for as long as there are people to read them, and the veracity of the storylines will undergo continual reassessment with each generation.

While objectivity and truth are subjective concepts, the essential elements of good literary journalism are trust and a well-balanced story – i.e. one that has been researched and presented all opposing views on a topic. The art of great literary journalism, however, is not in the facts but in the telling of the story. Writing a list of well-balanced, objective truths may seem highly ethical, but at the end of the day, it is probably highly boring. Readers need to feel engrossed in a story and to empathise with characters before making the time commitment to read a substantive piece of literature. It is the responsibility of the literary journalist to gather the necessary facts then collate them in as objective and truthful a manner as they can, but then to present the story in a captivating format without detracting from the essence of the facts.

So, what are our responsibilities as readers?

We must read every piece of work with an open mind. We need to leave behind old prejudices and give other viewpoints the benefit of the doubt. At the same time, we must remember that everything we read is merely someone else’s viewpoint and if we wish to take it on board we have the responsibility to do a little of our own research. The scientific world does not consider a study “proven” unless it has been peer-reviewed and reproduced more than once. Perhaps the same rule should apply to both the writing and reading of contemporary literary journalism – it is not fact until verified more than once.

Truth is subjective and no more so than in contemporary literary journalism. When a writer attempts to engage a reader, they must paint the picture as they see it. As readers today we have the responsibility to never let the story get in the way of a good fact.