“But You Don’t Look Sick?”

“But, you don’t look sick.”.

Five seemingly innocuous words, that to the recipient are so ‘fully loaded’ they may as well be a 2005 film staring Lindsey Lohan and a vehicle named Herbie (keeping it current, as always). Let me explain by first asking a question. What would ‘sick enough’ look like? 

When I was in the deepest clutches of my anorexia my blood moved so sluggishly that I was freezing in the middle of summer, bundled up in layers of clothes. My period had stopped due to malnutrition and even now, 10+ years on, it has never fully normalised. My fingers and toes were constantly blue, as all my blood was being channelled centrally, toward my vital organs just to keep me alive. My stomach cramped if I ate anything at all and I could feel the movement of food through my intestine (yeah, that shit nasty!). My eyes were dark and sunken, and my skin grey, yet still easily covered with this seasons latest make-up trends! My thick hair was falling out, but I had plenty to begin with, so who would ever notice. And obviously, I was skinny as fuck. However, I didn’t look like the typical movie portrayal of anorexia with jutting bones and 0% body fat. I wasn’t ‘concerned-Dr. Phil-thin’. I probably wasn’t even Hollywood thin, and yet my body was shutting down and I was dying. The scariest thing of all? I continued to get compliments about how great I looked. Here I was, envying the bodies of random crack addicts who obviously hadn’t eaten in weeks, and whose faces were all scabbed up from fighting off the invisible bugs that crawled beneath their skin, and I was being validated for it. What a fucking world. Now that’s the real heroine chic, sit down Kate Moss! 

Comic Girls Say..It must be noted that anorexia is first and foremost a mental illness. I think a lot of people miss the fact that anorexia is possible at any size! It depends on how you feed, see, and punish yourself. As you will learn throughout this essay, I have had a lot of health problems throughout my life, and in my experience anorexia is up there with the worst of the worst. It is self torture, and it is nothing more than an agonisingly slow form of suicide. It is not to be taken lightly, brushed aside as teenage angst, or excessive vanity. In fact the opposite is true; it is motivated by deep self-loathing and severe anxiety. Terror really. Discovering where the insecurity and lack of control is arising from is key in healing from this ugly disease. ‘Ana’ truly is an evil c*nt. 

Silverchair – Ana’s Song

IMG_2479.JPG

Please die Ana 
For as long as you’re here we’re not
You make the sound of laughter
And sharpened nails seem softer

And I need you now somehowIMG_2482.JPG
And I need you now somehow

Open fire on the needs designed
On my knees for you
Open fire on my knees desires
What I need from you

Imagine pageant
In my head the flesh seems thicker 
Sandpaper tears corrode the film

And I need you now somehow
And I need you now somehow

Open fire on the needs designed
On my knees for you
Open fire on my knees desires
What I need from you

And your my obsession
I love you to the bones
And Ana wrecks your life
Like an anorexia life

Open fire on the need designed
On my knees for you

Open fire on my knees desires
What I need from you
Open fire on my needs designed
Oh, and open fire on the needs designed
On my knees for you

Fun side note: Daniel Johns and I actually attended the same rehab, which makes me feel more like an unruly child star in the ilk of Bieber, Lohan or Bines, rather than the mentally ill junkie that I was. Yay for perspective!
IMG_2491.JPGWhen I finally had the courage (or pure desperation) to confide in people, I was looked up and down like a piece of meat, assessed and judged for the body I loathed, before being dismissed with, Wellyou don’t look that skinny.”. These days I do my very best never to comment on anyones else’s body, even if I know a friend is working hard on their weight-loss ‘journey’. Not only because it is boring and no-one gives a fuck, but because no-one just wakes up one day and decides “today’s the day I’m never eating again!”. The development of anorexia is a slow process of ‘playing with’ dieting, eliminating foods (eg. suddenly becoming vegetarian, cutting carbs, or claiming to have food intolerances), and skimming portion sizes. This process can take years. It is so slow in fact, that the sufferer will often have no idea what a regular plate of food looks like anymore, or even what hunger feels like. It is deeply confusing, scary and insidious, and it is harmfully encouraged by the confirmation that a smaller-sized version of you is a better one. So not only is it incredibly toxic to comment on an openly anorexic persons appearance, it is potentially dangerous for someone who is susceptible to developing an eating disorder. I mean, just tell them their outfit is fire (or whatever the kids are saying these days)!

 Comparably, it is just as damaging to tell a chronically ill person that they don’t look sick”. The cruellest thing you can do to a sick person is ask them to prove their illness to you. Chronically ill people spend their lives trying to look and act as normal as they possibly can. If they look ‘well’, that means they are very well practiced in the art of smiling through pain, ignoring fatigue, and trying their best to make you less annoyed or uncomfortable by their symptoms. Never, make a sick person feel as though they are not sick enough. We have enough of that guilt already. 

Pegal, kuyub, dingin, masuk angin, umur, iya, tau kok, ok, selamat malam dimps! :))For example, I have a range of serious mental health issues (who doesn’t right?), which fluctuate in potency depending on life circumstances, hormones, and whatever the fuck my brain feels like throwing at me that week. I also have hangover issues from my cancer, surgery and chemotherapy treatments, such as fibromyalgia and chronic fatigue syndrome. Yes, they are real conditions (I can’t quite believe I have to say that). They have changed my life forever (I’m trying not to write ‘ruined’), and I can’t think of anyone who would ever choose to fake the 60+ symptoms they can produce. Yet, I am still regularly reminded that “it’s all in my head.” to which I respond with a quote from the ever fascinating, Fiona Apple, and reply “So’s everything. But he didn’t get it.”, and generally the people that would make ignorant comments like that will not get it, but luckily I’m much too sleepy to waste my time explaining it to them. In short; pain is pain. It doesn’t matter if you can see it on a scan like a broken bone, or not. If your brain is triggered into a pain reaction, you will experience the sensation of physical pain. I would argue that it can be worse if there is no sign of physical damage, as this generally means a significantly slower and more difficult issue to treat. Not to mention it is extremely invalidating and frustrating for the patient.

Life lately... #coffee #need #tired #sleepy #coffeelover #life #energie #Regram via @liciakyaMy mental health is quite unpredictable, although I am getting a little better at understanding it, which can help. However, my physical conditions go through stages of ‘flare’ (not the fun, jazz-hands kind, unfortunately), and ‘remission’. Right now I’m in a pretty decent remission phase, and can work a little for myself. When I am in a flare-up, I am completely incapacitated by pain, exhausted to the bone, and tackling a lot of other really odd, depressing, and annoying symptoms which make it impossible to work. I won’t list them, because yawn, but you can google if you so choose. 

Image result for ricki lake go rickiDespite all of this, I, and many others like me, do not qualify for disability assistance. So WTF does that tell us chronically ill  folk (or Spoonies, as some call themselves)? It tells us that we are not sick enough to warrant assistance, but we are not well enough to contribute meaningfully to society. We are left floundering in no-mans land. We exist in limbo, and many of us carry a deep weight of shame because of this. As our illnesses are invisible we are often presumed lazy, or that we lack motivation. Personally, nothing could be further from the truth, and in fact, it would’ve made my life a lot easier if that were the case! I didn’t want to spend my life nursing illness after illness. And then illnesses that resulted from previous illnesses! How fucking boring. I had big dreams. I fought tooth and nail not to give in to my shitty body, until it finally completely collapsed on me, forcing me to grieve the person I had always imagined I would become. Goodbye Lady Gaga/Ricki Lake-hybrid aspirations! You will be missed. Nothing, legitimately nothing, in my life looks how I had envisioned it. That was a beyond hard transition, but many an existential crisis later and I have finally admitted defeat. I am slowly learning to embrace the cards I’ve been dealt and do my best with what I got (look at me, Mrs. Silver-fucking-lining over here!). I still swear a lot though, because… FUCK ME IT’S A MOTHER FUCKING BAG OF DICKS SOMETIMES! 

The Struggles with Chronic IllnessesI have no idea how my Spoonie sisters and brothers survive. I really don’t. The only way I get by is because my father passed away relatively recently and oh boy! Lucky me!, I have some inheritance to slowly whittle away on my medical bills. Whoopee… Yes, I am scared for my future. Everyday. I just have to hope that one day I’ll be in remission long enough to be able to work a gentle, low stress job, that won’t be physically or emotionally demanding, and that it somehow pays a fuck tonne of money, while offering flexible hours, so I may rest as much as needed in order to return each day without depleting my energy stores! Simple! *shit…* Anyone got a winning lottery ticket they want to hand my way? I won’t perform sexual favours, but I could be persuaded to flash my left breast? That’s the good one! 

Find the ultimate pop art essentials for your mid-century home decor |www.essentialhome.eu/blogSo, not only was my Anorexic-brain convincing me that I was failing at being skinny, because 1. I was still breathing (and that’s what being ‘successful’ at anorexia will look like. Death.), and 2. Because I wasn’t “that skinny”; but I was also actively being complimented on how great I looked. Each compliment like a confirmation that my slow death was a positive and that this, weight loss, was the prime purpose of my vapid existence.

I was lucky. I had bigger dreams, and was convinced my destiny *cough cough* was to sing to the world! So, when anorexia started to steal my voice because I had become too physically  weak to breathe properly (yeah, apparently that’s a thing!), I decided if I was going to live, I may as well channel my obsession into something useful. After all, a large reason I was starving myself to begin with was to emulate the artists I’d admired for so long. What was the use in looking the part, if I could no longer access the talent? Slowly I began the tediously long process of healing. It was uncomfortable, scary, painful, life-saving, and by far the best decision I’ve ever made.

Nerve pain might not kill you, but it feels like a work in progress. I have nerve pain so bad .As I was working through my anorexia recovery, I was diagnosed with cancer. This brought with it a lot of guilt that perhaps I was to blame somehow. That I had treated my body so toxically, that it had rebelled with disease. These days I don’t take that kind of shit on, but I was young, scared and searching for an answer more than the randomness of life.

I went into recovery from anorexia at 20-years-old, and was diagnosed with a dangerous spinal tumour at 21 (OMG woe is me! What a whiney bitch!). Again, I was met with comments on how well I looked. Let me say, I know most of these comments are well meaning, but they are invalidating and undermining of the suffering of the sick person, and therein lies their damage. Before I was diagnosed I was in agony. I would not just cry myself to sleep, but scream myself to sleep in pain. My back felt like it was broken (I guess technically it was), but the doctors didn’t find anything for 5-months, so just assumed it was severe muscle spasm that wasn’t releasing. I kept working as a fitness instructor until one day my back actually made a cracking sound and I doubled over in pain, almost passing out from the intensity. Later I was informed that it was likely that small pieces of bone were now breaking away from my spine as the tumour grew. Vomit. I now know I can work through anything… but I mostly choose not to! At night my mum was on-call to bring me ice packs and keep my Panadol levels topped up, but it wasn’t scraping the sides of my pain. When I finally received my diagnosis, they put me on that morphine good shit! Thank you baby Jesus!

Jesus Take The Wheel Take Over GIF - JesusTakeTheWheel TakeOver HelpOut GIFs

I was in terrible pain. So much so, that despite chewing down enough opiates to kill a baby elephant, I was still in significant pain. Alas! I was high as a mother-fucking kite, so it wasn’t all bad. I was tired, doped out, and flying high on synthetic heroin (mmm…yummy), so considering I had just been diagnosed with a life-threatening illness, I looked pretty damn good! Additionally, the kind of chemo I received had very limited side effects. I didn’t lose my hair, or turn green from nausea. I didn’t need steroids, so I didn’t bloat. I lost a bit of weight, coz cancer, but also because I read that being vegan aided natural healing (in actual fact it majorly triggered my eating disorder so…not so helpful in my case). Honestly, cancer looked good on me! My friend Sam* would say the same. She had a brain tumour, and together we agreed we’d never looked better. She’s dead now. So, once again I ask, what does ‘sick’ look like? 

Image result for frankenstein loveIf you’ve ever read anything I’ve produced before you will be aware that I developed an addiction to said opiates. It’s been about two and a half years since I’ve tasted their sweet poison, but I still feel warm and fuzzy when I think (or write) about them. I grieve those pills like a lost love. Probably partly because their chemical make-up is physically very similar to that of the chemicals we produce when falling in love. That’s right, it’s chemical fricking love. That’s some Frankenstein shit right there! I was a full blown, filthy junkie for that shit. Oh, I ain’t playing either! I would have quite happily let it kill me. I’m talking, scraping the tiny granules off the floor of public bathrooms. Stealing from my absolute God-send of a mother, who was desperately trying to protect me from myself. Lying as a matter of course. Using while studying at university (I studied nutrition. Have a field day with that!). Falling to my knees and crying bloody murder when I got cut off, rather than weaned off, in rehab. I was well fucked. But hey, at least I looked fucking good doing it! Okay, I was a touch grey, constantly clammy, and completely dead behind the eyes. But other than that, I looked pretty fucking hot. I even filmed a music video during the midst of addiction, and it’s still my favourite one to watch, because I think my body looks sick as fuck! But like, fully sick. Not sick sick. I see now I could have used a better adjective… 

Hearts - Cuori - Fatto con AmoreBut see, I wasn’t a street junkie. I never bought from strangers, or used illegal, street drugs. Like a bored, rich, housewife from Orange County, I abused prescription medication. My GP was my dealer. The same doctor who had seen me through my recovery from anorexia, cancer, and a myriad of mental health spirals. How shameful. How sad. That’s addiction. You would sell your own foot for a fucking line, and be happy you still had another one to score again later. Let’s be clear. My doctor is not on a pedestal for me. He made mistakes and missed many signs. However, I didn’t make it easy for him to spot. There is no way in hell he would’ve prescribed me shit if I looked like an underpass junkie, and I knew that. If I went in to his office covered in scabs and all twitchy from the come down, do you think he would prescribe me anything? No way!

31 Great Memes & Pics ~ Funky Fresh & Funny 11Sure, I was suicidally depressed, and spent the time in the waiting room pacing back and forth, twitching and randomly crying, but hey, at least I was there talking about it (yikes)! I regularly saw a psychologist and psychiatrist. I went to university. I was well dressed, and I looked realatively healthy and responsible. I was good at playing the role for those 8-minutes a week I was in his office. Yet, there I was, shoving oxy up my nose at 5am as I drove to the station to start a 10-hour day of treating patients and obsessively rationing out my gear for the rest of the day. As soon as I would get home I would knock myself out on sleeping pills (mostly just to stop the panic attacks and tears), before waking up and doing it all over again the next day. It’s so strange to think about. It seems so far away from the person I think I am now. But that was only 3 years ago. I had been an impulsive kid, but never a ‘naughty’ one. Drugs had never interested me. I was the kid turning down the cigarettes and weed at high school parties, to the detriment of my popularity, because I had bigger goals and ambitions. Well, look at me now! [Cut from; getting handed the “most likely to succeed” award at the end of high school graduation party! To; racking a line in the Melbourne Central disabled bathroom stall, while my pharmaceutical text book peeks through my bag disapprovingly]. That’s how they will show it in the Hollywood remake of my life. Dah. All this to say once again, you cannot tell from the outside, what is going on within.

 I read something recently about ‘usable hours’. Apparently the ‘average’ person has 10 usable hours in a day. These are hours where they can be active; go to work, partake in activities, or run errands. This, BLOWS. MY. MIND. You guys have 10-hours of this shit? Fuck me! The things you must have seen! Right now, with my fibro/chronic fatigue, I’m rocking about six usable hours and that suits me just fine. I can keep up with my television stories, write a bit of nonsense, and smash some cheese into my face. But two years ago I pushed my fragile body too far for it to keep up, and fell into the worst fibro flare I have had to date. I actually thought my organs were shutting down as I could see problems with each of my bodily systems. I was so sick I only had two useable hours a day. Two hours of wakeful, functional activity. That includes time to shower, dress and eat. It sounds mental right? Image result for memes funny koala picturesLike, what am I? A fucking koala? I mean, I may sleep 22 hours a day, be a drug addict (that eucalyptus is the real shit!), and riddled with chlamydia but wait… what was I arguing again?

With my two wakeful hours I would go to the doctor, and try to do some light exercise. What a life! It took me 6-months to slowly start building myself up, minute per minute, day by day. I legitimately had to increase my walking by one minute per day because anything else would have destroyed me and left me worse than I started. Wild. Nowadays I seem to have plateaued at the 6-hour mark, but I’m fine with it. I’ll take what I can get. At least I’m not on koala time anymore… creepy little sex pests.

haSo what’s the moral of this story? Mind your own business and believe people when they confide in you about their health struggles? Think twice before commenting on other peoples appearances because you never know what someone might be dealing with? Everyone is fighting a battle you know nothing about, so be kind? Meh, make of this what you will! In actuality, this was just a blatant opportunity for me to humble brag about how unbelievably attractive I am, despite the fact that I’ve been on the verge of death my whole life! And you know what? That’s not a bad take home message either.

Thank you, and good night.

 

*Name has been changed.

Auburn

Auburn is my mother,

Maple leaves a mark from home. 

I snuggle in her gentle arms

As she whispers, “You are strong”. 

 

Auburn is an oak tree,

Sturdy and robust. 

Beneath I write some cheesy song,

About the object of my lust. 

 

Auburn colours romance,

But not a one brand new. 

It’s comforting and worn,

Like your favourite pair of shoes. 

 

Auburn was my father,

Rising with the sun for work. 

His briefcase packed with boring things,

 Now I wish I’d cared to look. 

 

Auburn were her lips when she cackled wild and free.

Auburn burnt the paper as she singed a joint for me.

 

Auburn were her eyes,

Right before I closed them. 

I’d imagined they’d be milky,

Like a fish I’d just unfrozen.

A crude thought I know…

But how was I to have known? 

She’d be as lovely as the day we met,

Hospital bed, her throne. 

 

I sit here blonde and ashy.

She liked me auburn haired. 

Fiery”, she told me,

Like she knew me,

Like she cared. 

 

Auburn was my heart, As it broke not it two but three.

And auburn were my fingers, 

Next to hers blue… 

Leaving me. 

 

You are my home

The Invisible People

 

I like people who have survived or are surviving. I like people who are open with their vulnerabilities, “failures”, and desperation. I like those that despite the protective layers of armour they have built up around them, their heart still bursts free of their chest like a child that has yet to be hurt. Because when you have been forced to survive against all odds, you truly understand the value of even the smallest expressions of love. It’s not that you will always be able to offer it. In fact, in times of survival, when your tap is completely run dry, sometimes all you can do is take from others. The times I’ve been in survival mode have been some of the most selfish and needy of my life. But that is when you learn the value of a kind face, or a helpful gesture. When you feel completely alone in the world it means everything for someone to see you and not overt their eyes, despite how ugly survival may make you. And I’ve been real ugly.

 I call us, ‘the invisible people’. We are the people society either shuns intentionally or simply forgets. The elderly; tucked quietly away in homes. The epitome of “out of sight, out of mind.”. The homeless; who are almost the polar opposite. They are in your face at the station where you get off for work, they interrupt your night out asking for money so that they might eat, or god forbid, spend it on drugs to feel good for a few minutes. These people are not hidden, but they are not seen. I’m not sure which is worse. I get along with criminals and people who live on the fringe of society. It’s so easy to demonise something we don’t understand but if you have really had to survive. I mean, fight for your own life, or that of your families’, not just for a day, but day in, day out, year after year; it’s much easier to have compassion for those that ‘break the rules’ in order to survive. People with chronic or long-term illnesses are similar to the elderly. Friends will come and offer support at first, but as they start to realise that you are not getting better, and this is a life-long adjustment, it becomes boring. It’s human nature to shy away from situations that make us feel helpless, and being with a chronically sick person usually highlights that helplessness in us. But it means that many of us with chronic illness become more and more isolated, depressed and of course, invisible.

 The final semester of my degree (2016) was probably the worst time of my life. I almost didn’t return, and in hindsight it was probably too soon to be back. The short version is this; my relationship of 7-years had ended hideously, against my choosing. I’d watched my best friend deteriorate rapidly from brain cancer and subsequently pass away. And my father had died unexpectedly in the Middle East, from circumstances I still find suspicious. This was all in the space of about 5 months. I think that would be enough to make anyone snap but add to that my crippling co-dependency, co-morbid mental and physical illnesses, and the fact that I was now living alone for the first time in my entire life; I felt like I couldn’t breathe. I cried so much I didn’t even know where the tears were coming from anymore. The breaking of my heart was a physical searing in my chest, and convulsive gripping in my gut, that I was convinced would kill me. I truly believed I would die of a broken heart, and I am now sure that is possible. Every second I was awake I either had a drink in my hand, a line up my nose, or a pill down my throat. On a “good” day, all three. But I didn’t want to be awake. I wanted to sleep through the grief and wake up when it was done…or just never wake up. Either way, I honestly didn’t care. I was not coping, but despite myself I was going to survive.

stoned-in-parisAnd survive I did… by any means. The means of which I chose was drugs and alcohol. Never one to do anything by halves, I did not hold back. Due to an extensive spinal surgery I had in my early 20’s, I had a fairly regular supply of grade-A opiates on hand at any one time. It was a small problem, but manageable, right up until life wasn’t. And therein lies the Cliff’s Notes version of many a drug addict before me. Recreational drug use + ugly bump in life (maybe throw in a mental health issue as well, just for that extra oomph), = full blown addiction in rapid speed. RDU+UB=A². Look dad, I mathed!

Now I'm fucking falling apart and can't fucking breatheWithin three months I went from almost completely weening myself off the opiate pain killers, to getting withdrawal sweats if I didn’t shove something into my nose, mouth or eyeballs in the space of half an hour. Okay, I wasn’t quite at eyeball level. See, there is always further to fall kids! Of course I don’t endorse this as a survival method, but it cannot be denied that without drugs, I wouldn’t be here to tell the tale. Yes, they fucked up my life and health in many ways that will never return to their previous state, but in terms of short-term survival, many days they were the only reason I woke up. Wake up, rack up, snort line, survive (not a bad song lyric actually. Although if you ask 90’s Eminem it probably already is one). This little process would repeat until the day was done or I mercifully passed out. Passing out was the preferred option because then I would get a break from crying, aching, and life-ing.

Freaks • 1932God, I was just so sad. I can’t describe the grief. There aren’t enough sad words in the English language to explain that kind of heartache. Broken. Shattered. Empty. Anguished. Despaired. Tortured. Grief-stricken. Lonely. So fucking lonely. Lost. Agonised. Tormented. Alone. Desperate. Pained. Suicidal.
Put them all together and we are inching closer. I’ve never felt like that before. It was depression, but this was no ordinary depression. This was, end-it-all depression, and it lasted a long time at that intensity. Two and a half years long. So as ugly as I was, and as ugly as the drugs made me, I am grateful for them. They are just one tiny part of my recovery puzzle, but they aided in saving my life.

ViomilaOne of the reasons I resonate so strongly with vagrants, loonies, junkies, and criminals (all said with multitudes of love and affection), is because the only difference I see between myself and them is that I had a supportive family who had the funds, will, and patience to aid in my healing. That is not to be underestimated. There was a moment when my brother dropped everything and drove me to the mental hospital (or as I like to call it; the loonie bin). My insurance didn’t cover my stay there and I had to decide if I wanted to pay the $2500 for a short one week stay, or go spend that same amount of money on street drugs. Two things happened here; 1. If I had been alone I would’ve left, given up on myself and bought the drugs, but I had my brother there to encourage me to better myself. 2. I had the savings in my bank account to pay for the stay. That is a luxury not afforded to many. I may have been a fucking heartbroken, suicidal, junkie, but in that moment, there was no denying I was lucky.

Ladies don't kill, they merely just...interrogate and take away the non-gentleman's breath.

It’s accepted knowledge that people with mental illness are far more likely to develop drug abuse issues, end up involved in crime, in prisons, or living on the streets. Well, I’ve almost got as many mental illnesses as I do fingers, and I was quickly becoming a full blown addict. I was also full of rage, and I was suicidal; meaning I didn’t give a toss about the consequences of my actions. That’s a dangerous combination that could’ve easily lead me to make a seriously misguided decision and ruin the rest of my life.

That's not very nice, now is it?
The grief in me was surfacing as rage. I didn’t know I could be so angry. It was like there was a flame alight inside of me, charring and scolding me from the inside out. I didn’t understand how everyone was walking around so contently while I was on fire in front of them. How could they leave me to burn alive like this! Couldn’t they see I needed their help? I hated them for not seeing it. For not seeing me. My mind was full of violence toward myself and others. But, even though I had given up on everyone, there were still enough people and structures in place that hadn’t yet given up on me.

All-DarksMy psychologist talked me out of ruining my own life on a weekly basis, I had a psychiatrist monitoring my medication, a GP I trusted, and a warm, comforting home to go back to with a loving, if exhausted, family. My mum and brother are my heroes, and I will never forget the last correspondence I ever received from my father. I’d emailed him in the Middle East to let him know I was in the psycho ward (a place I actually remember fondly; a story for another day perhaps). I was unsure how he would respond but he simply replied, “If you had a broken ankle you would be in hospital to mend that too. You are doing the right thing.”. My dad wasn’t always the best with words growing up, but those are some pretty great ones to go out on. Thanks dad.

I was one of the lucky ones. A lot of the people I met who were living on the street could not say the same.

I could no longer relate to anyone at my university. These chipper, healthy, studious, young woman who had goals and dreams to be successful health practitioners (nutritionists) and practiced what they preached. I wore a white coat in the clinic that mocked me as I smoked cigarettes around the back by the bins, and downed my 10th cup of coffee of the day. I was a fucking fraud. My only goal was to get to the end of each day so I could go to the train station liquor store, drink cask wine on the ride home, pass out, and start again in the morning. I related to the men and woman sleeping rough outside the station. We’d smoke together, talk shit and share my lunch. After my dad died I even started filling the pockets of his old jackets with snacks or sanitary products, and handing them out to people in need on cold mornings. I guess I hoped that if I showed someone a small token of love, that maybe it would come back to me. I knew how much I needed it and I didn’t want anyone else to feel as invisible and worthless as I did.

Unbreakable Kimmy Schmidt season 3There was a selfish element to it, of course. I saw them, they saw me. It was nice. They saw good in me at a time in my life where everyone else thought I was misguided, pathetic and dark. These connections were incredibly important to me. These people who I saw for a quick cigarette in the morning before rushing off to class, were my friends. They were the people I connected to and I looked forward to seeing each day. They didn’t worry about me like the rest of the world. They had their own shit to worry about. But we appreciated each other in the moment and that was enough. That time in my life was horribly depressing and I’m so relieved to say I have finally turned a corner on it. However, it really helped me learn to be less judgmental, and that every single person has something worthwhile to offer if you are willing to be open to receiving.

… Even that one schizophrenic dude who I was having a perfectly pleasant chat with, until he started earnestly describing how he had just tried to steal a gun from a policeman because the invisible aliens were coming to capture him. I mean they could’ve been, what do I know? They were invisible after all! Ah, what a rare treat he was.*

Image result for e coronaI’m by no means perfectly healed. I didn’t “see the light” and transform myself into a content, clean-living, angelic specimen. LOL! The grief is at a manageable level most of the time now, but of course I still get debilitating waves where I feel my heart crushing in my chest. I still live with chronic mental and physical illness, which naturally brings me down (or up if I’m on a manic swing!). I guess what I’m trying to say is, I’m not special by any means. Which is great news, because it means that anyone can survive. There was no grit or determination involved. I had nothing left to “fight” with. It was pure endurance. I endured life for as long as it took to survive, and from this place of survival I am now able to work on building a life where I can thrive. I wish I had more advice, as I had desperately wished someone had had for me, but all I can do is leave you with one more quote from my late father, “Just put one foot in front of the other.”. What he meant by this was that as long as we keep moving, no matter how slowly, we will end up somewhere else. Somewhere in the direction of where we want our lives to go. With that I’m learning to enjoy the process over the end goal, and I’ve walked myself out of hell on earth. I am not special. I just survived.

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*No policeman were harmed in the making of this blog.

 

Let’s Talk About S..[uicide] Baby

I am what Instagram and online articles like to refer to as the “toxic” friend. I’m sure you’ve seen this on the cover of Cosmo before, How to eliminate toxic people from your life!”. There are few headlines that chill me to the bone and ignite my fear of abandonment more that this. I am terrified that if any of my limited group of friends were to scroll through that click bait that they would instantly realise that they indeed have that person in their life, and whaddyaknow?, it is yours truly! What isn’t given in those articles is the other point of view and in the light of so many high profile suicides of late, I would like to offer just that. I understand that suicide is an incredibly vulnerable subject and an exceptionally individual experience. So, keep in mind that this is solely my recount of living with long-term suicidal ideation and how this has impacted the way I view suicide as a form of death.

Moonlight Densetsu

I know that my suicidality annoys people. There, there, it’s okay, I’m aware. It’s not that people are inherently unkind or selfish, but generally speaking, humans are fixers. We see an issue, we want to fix it and move on. Done and dusted! So when confronted with a “problem” that seemingly has no quick fix or cure, it makes us increasingly uncomfortable and frustrated. As sufferers of suicidal ideation we already feel as though we are a burden on those around us, and being that we are largely quite sensitive individuals we can sense this frustration and blame ourselves. We in turn want to “fix” what is causing your frustration, but knowing (or simply assuming) that we are the cause, can mean that we hide away and isolate ourselves more as to not upset you. Sadly, this response furthers our loneliness and discontent, and pushes away what ultimately is the only remedy; love and a sense of belonging.

☆~Ella birak~☆Fostering an accepting community is key for a sense of wellbeing. Without it we are like the lost lamb of the herd; alone, disoriented and vulnerable to threat. This forces us to tap into our survival instincts, and being that humans are pack animals, this places a huge strain on one little lamby’s (or persons’) shoulders. In N.A. (narcotics anon.) the importance of community is held at the highest regard. The statement let us love you back to health,”, is heard time and again. A simple, but powerful statement (if a tad culty). At the same token, what walked most of us into that room was the crushing loneliness and sense of complete and utter overwhelm, that drove us to our addictions in the first place. I have said it before and I truly believe that loneliness and isolation is a killer. So, what the funk do we do? We can stay in bed, hidden under the blankets and surrounded by crumbs of old food and an empty bottle of vodka. Not a terrible option when you feel like nothing matters. Or… we can do our darndest to pull up our mouldy socks and slap on a fake-ass smile, in the hopes that maybe spending time with us isn’t completely unbearable and we will feel less painfully alone. However, this is exhausting. Just as it is for you to spend time with us when we feel like shite. I get it, it is intimidating to be around the angry, volatile gal. It’s boring and draining to hang out with the sad, mopey boy. And it is uncomfortable and at times even awkward or embarrassing, to be around the emotionally unstable cray bish (it’s cool, I can say that coz I’m 70% cray). It’s not ideal and we may not even be able to show our gratitude, but trust me, your friendship is appreciated.

awh

All death is difficult, but for some reason there is an added heaviness in our hearts when we hear about someone taking their own life. I am in two minds about this. I feel incredible sadness for the intensely agonising place someone must be in, in order to go against every single animal instinct that their body, mind and spirit has evolved to protect them from. But I, maybe unusually, feel immense joy for their current freedom. Let’s think on that for a moment. Literally since we were tiny little, single-celled amoeba bobbing about this mortal coil, we have been biologically programmed to survive and reproduce. Survive and reproduce. That’s our only job. So in order for a person to have the “desire” to take their own life and then follow through with that action, they must be in such an extreme state of distress, for a long enough period of time, to override their own chemical make up. That is not a small feat. The stages involved in musing about, planning, and then finally acting on a suicide attempt, are many and complex. There is the agonising about every layer of leaving loved ones, comparing the pain of staying with the freedom of nothingness, the fear of what actually going through with it might feel like or look like to those who find you, how people might perceive you and call you a coward who took the “easy way out” (seriously, don’t even get me started! It boils my blood when I hear that.), the list is endless. This is important to consider because it shows us that not only are we overriding our own animal instinct, but we must somehow override the voices of the external world and our own logical mind, not once, but at each and every stage, many times over, before any action would ever take place. This is a person in desperation.

Zippity doo dah

In my experience (and I’m sure many professionals will disagree), prior to finding the correct treatment, depression is a progressive disease. I found myself advancing to a new stage in my mind each time a major depressive spell, which lead into suicidal thinking, occurred. When I first started having suicidal thoughts as a teenager, I wouldn’t necessarily want to die, I just wished I didn’t exist anymore. I’d fantasize about getting hit by a truck and boom! Lights out! That sounded easy to me. Over time and over many years and extensive traumas, these thoughts evolved. As my internal pain became deeper and more incessant, my thoughts of suicide became more detailed and held more conviction. Right up until 18-months ago, when I was checked into a facility and asked point blank, how I would do “it” by the on-call physician. I looked at him with tired, sunken eyes and without a moments hesitation told him my game plan. I had been over it in my head a million times by this point and the only thing preventing me from acting it out was the last tiny glimmer of internal strength I had left. I had no fear of death or dying, and this still rings true today. In fact, I was looking forward to it. I think that’s when you know you’ve checked out. Of course, the bastard then went on to debunk my “genius” plan of self destruction and described to me in intimate detail how it both, wouldn’t work and would in fact make my, and my families’ lives much worse. Ughhhhhh, fine I won’t kill myself! Farrrrrrrck! So, in hindsight…cheers dude, you saved my life. Even if I did spend the next hour abusing you for ripping away what, at the time, seemed like my last hope for relief. Saaaarry! 

Even though I am no longer actively suicidal, I have noticed that spending so long in that place has fucked with my neural pathways a bit. I am very quick to jump to suicide as a “solution” to a comparatively minor problem. “Oh nooooiii I lost my slipper! I wish I was dead!”. Okay that may be a slight exaggeration, but the point is, it’s disproportionate. Thankfully, these spells only last a few days or weeks now, which may sound a lot, but compared to TWO BLOODY, MOTHER FEKKING YEARS (hem hem…excuse me, still working though some shtuff…), it’s doable. The other thing that has warped in me wee brain hole is that I find the idea of bringing a child into the world a really horrific concept, and not just because I hear you are meant to poop it out of your delicate lady pocket (that’s science bitches)! No, I’ve never really wanted kids, but that was more from a desire to be a 90’s-Ally McBeal-inspired, career gal. Now it is much more driven by the bone-chilling fear that any child born with my DNA is not only susceptible to cancer and chronic illness, but also holds the potential of developing several debilitating mental illnesses and being raised on a view that the world is a giant cesspool of darkness and suffering! Also Trump is president. So like… I dunno if it’s for moi. Additionally, I have the genuine concern that if I was to have a child, I cannot guarantee that I could survive if I fell into another long-term suicidal episode. It sounds ridiculous I’m sure. “How could you not stick around for your baby?”, “Just think of their smile and all your problems drift into oblivion!” blah blah, motherhood is a gift, blah blah. I remember my first heart break and my last and I don’t want to feel this ever again... it’s just too painful.But being suicidal is not just a deep sadness. It is an all-consuming rotting of your heart and ripping of your soul. It is the sense that you will never ever feel anything but despair, darkness and loneliness for the rest of your life. It is heavy and gnawing and you can feel it physically in the twisting of your gut, the aching of your heart and the heavy, dragging of your limbs. It is desperately trying to stay alive when every second your entire being is begging you to be put out of its misery. It is being on your death bed, without a plug to pull. No release is coming for you. Pure and simple, it is hell on earth. I survived it once. I made it. But, I can not and will not promise a tiny human that I could do that again.

I cannot imagine the hell my mother went through as we sat on my bed together and I wept uncontrollably and desperately begged her to let me die. Begged! I just wanted the permission to let go. Of course she was never going to say “sure kiddo!” and send me on my way. I don’t believe what lead me to this place is necessarily important, but essentially it was a combination of several mental health issues, chronic physical illness and a series of significant deaths and losses that occurred in a very short period of time. Basically, my brain imploded in on itself. I have this theory that a certain amount of trauma strengthens us, but that there is a tipping point at which it becomes too much and we start to buckle under the pressure. From that place, in my experience, it’s hard to rebuild from the rubble. Not impossible, but certainly much more difficult, and that’s where I live now. In a kind of limbo.

I have always said, I am an acquired taste. To quote Ramona Singer, who clearly needs no introduction (but just for the record is an O.G. from The Real Housewives of New York), “I’m an acquired taste. If you don’t like me, acquire some taste!Okay, she’s brash and entirely unlikeable, but she’s got a point. I acknowledge I am a difficult person to get close to, and some may argue, even more difficult to be close to. I don’t have a large group of friends, but the people that have chosen me and accepted me have proven to love me through seriously fucking ugly times. When in a deep depression, people inevitably fall away, and it will hurt like a mother fuck! People you thought would be there through thick and thin will disappear and never come back (I know. Fuck, it’s a real gut punch!). What I have learned is that some (many) people just can’t handle watching someone else suffer, and even more can’t stand the feeling of helplessness that comes with that. It fucking sucks major monkey balls! It really does. But hear this, it is not about you being a burden or a giant pain in the arse. It’s their own baggage burdening them. It’s horrible, especially when you are going through a period of suicidal feelings because you already feel completely alone. I feel you! because she's a sociopathBut if you can, look out for the people who are still on your team through those times. I have constantly been surprised by the people who have come out of the wood works to offer support, friendship, a drink of wine, or an ear to whine at, and from those have come some extremely significant friendships.

:p

Honestly (and unfortunately), this is a hindsight thing. In my experience it is practically impossible to see who is there for you while you are in the midst of it all, and that makes it really tough. It must be tough on the friends that are there too, because I’m sure they feel like they are doing as much as they can, but it’s just not penetrating. Soz y’all! My advice to loved ones would be to become really overt with your affections. Don’t send wishy washy texts like “let me know if you need me/anything.”, this is not helpful. We need so much we don’t even know what we need! Something more like, “OMG you showered today! I’m so proud of you!”, or “I’m picking you up in 10, you need an airing out.”. Don’t organise long outings, they are exhausting; coffee breaks and little walks are plenty. Bring some food like you would if someone was sick, coz um…they are! It’s so easy to forget that. Man, if I received the amount of casseroles I got when I had cancer, while I was terminal with depression, well hot damn!, I would’ve been so full of stewed meats I’d forget what ever made me blue in the first place! Bc I persist through space and time. When I cease to exist in time, I will cease to exist in space. But will I still occupy the space from a previous time or is it all just vapor? Is the moment real? Does anything really mean anything or is it all transitory en route to some greater end? Maybe time is just a chemical reaction and will last as long as the transformation requires. Maybe it's much more complex than that...Alternatively, if you are too busy or someone who struggles to physically engage in difficult situations, take a page one of my beautiful friends’ book and send a box of personalised goodies. A couple of my girlies got together and created a kind of gift box full of simple stuff like chocolates, coloured pencils, a colouring book, some letters of support and calming tea. It made me realise that I was important enough to somebody to have spent time thinking about. I remember feeling like, oh my god, I exist!”Which was bizarre, after feeling like I was less of a person and more of an empty, expansive void for the longest time.

I know I’ve been a bit playful with such a serious topic; I dunno, tears of a clown or some shit. But the issue of having an invisible illness has never been more clear to me than when I was suicidal. I previously used the world “terminal” and I chose that word purposefully, because I have first hand experience that suicide is not a choice. I could seriously rant about this, but I think it is really one of those things that if you haven’t experienced suicidal ideation, it is quite difficult to make sense of. Alternatively, if you have, you will unequivocally know that given the “choice” to feel any differently, of course you would. As previously mentioned, it is not in our genetic make-up to want to die. That indicates something is seriously wrong. In fact, the strength it takes to not commit suicide is actually ludicrous. Lu-da-cris! I have never pulled so much strength from such piddly little reserves in all my life. There is no doubt, I was dying. It was slow, and excruciating, and all I wanted was for it to be over. Grown up? Me? I suppose I have. Killing things, and almost killing myself, must have changed me some, after all.Today I work extremely hard on maintaining my mental health and building my resilience to, well…existence essentially. But for the most part my brain is still like a bowl of mashed potatoes, trying to be squashed back into its jacket and pretending to fit in. I am forever changed; I predominantly view the world with a thin film of shit smeared over the lens, and I live in a perpetual state of existential crisis, but the fact that I am no longer actively suicidal provides insurmountable relief. Zomg I am so fun! Yikes…

Fuck, who knew I had so much to say! Just a couple more things. You are doing so well!

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The reason I wanted to explore how much long-term depression, ruminating thoughts and overriding our survival instincts comes into being actively suicidal, is because of the push-back against important programs like 13 Reasons Why, which explores mental illness and suicidal subject matter. The comment that these programs might be glorifying suicide is honestly laughable to me. Anyone who is contemplating suicide does not watch a program and think, “Ya know what, I didn’t think of that! Great idea!”No, they have most likely been obsessing about it for years before any planning or attempt ever takes place. The most it could do is plant a seed for the ‘how’ of it all, but at the end of the day, someone who doesn’t want to die will be as inspired to commit suicide by a television program, as someone who does will be swayed not to, by watching I dunno…something fun, Full House.? Yes. Great modern example… :/ It’s just not going to have an influence. As much as it may seem like it at the time, suicide is not something that just happens on a whim.

Love the mixed media and surrealism. But there's a goo message behind this one

My final comment is on the remarks that have come out about the high profile suicides recently. I have read a lot of statements about how Robin Williams was such a fun, generous man, Kate Spade was such a bright and talented woman, and Anthony Bourdain was successful and inspiring. All of these comments may be true but it doesn’t mean they didn’t suffer from depression or mental illness. I think there is a misconception that if you have depression, that you are always sad. Just walking around, dragging your feet and moping constantly. It’s not true. You go through periods of depression that may or may not have triggers and sometimes you can cope with them, and other times you can’t. Personally, I am a pretty pessimistic person (if you hadn’t yet figured that out), but I am still fun, funny, interesting, totes adorbs, stunningly good looking (am I getting derailed? Soz), and can experience love and joy, just like anybody else. It may be harder and I certainly need medication and a team of doctors to keep my mash potato brains in place, but it is not that suicide comes out of no where and nobody saw it coming. It is that for whatever reason, on that particular day of their life, it got too hard to fight. It is not a choice, it is not a weakness, or a giving up. It is a death. red-lips-and-heart-candy -#ravishingredAnd personally it is a death I choose to celebrate, because here is somebody who was suffering a great deal, who has finally got the peace and freedom they couldn’t find in this limited physical realm.

People who are suicidal need your love now. While they are at the most unlovable, ugly, irritating versions of themselves. Once they are gone, we can and should celebrate these incredibly individual, sensitive and empathetic people, because they are finally, after a life of struggle, at peace. And I know I am a weirdo, but to me, that is a beautiful thing.

Então, esta é a minha vida. E eu quero que você saiba que, eu sou tanto feliz e triste. E eu ainda estou tentando descobrir como isso poderia ser

Suicide helpline Australia: https://www.lifeline.org.au/ or call 131114

CATT: I have personally used and can endorse the Crisis Assessment and Treatment Team. They were fabulous when I needed them the most. Call: 1300 721 927

 

The Cancer Chronicles Part 4: The Hospital

Below is an X-ray of what my spine looks like today, post spinal fusion. What you can see is the entire thoracic spine, fused together by titanium rods and screws. The contraption you see in the middle is the metal cage that was filled with powdered bone from one of my ribs, as a replacement for the vertebrae they removed. To the left of this metal contraption, on the left image, you can vaguely see an additional missing rib, which was removed as it was also infected by the cancer. The goal is that the rods will not move at all. I am just lucky that the thoracic area is the least mobile of the entire spine so it is not as noticeable as it would be in the lumbar or cervical areas. But, not gonna lie, it’s still a total buzz kill! 

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X-Ray of My Spinal Fusion

 

For context, please first catch up on Part 1 & Part 2 of ‘The Cancer Chronicles’ at the links provided. Or alternatively, pick up at Part 3 for a mini re-cap. 

10 Preposterous Reasons for Calling in Sick to Work -- Pretending to have a bad head cold sounds so boring compared to these sick day excuses!After the nightmare of waking up prematurely post surgery with the breathing tube still down my throat, things slowly started to improve over the next several days. By day three I was moved into my own room and out of the madness that was the intensive care unit (ICU). I was finally relieved of the plastic drainage tube that had been wedged between my fractured ribs and partially deflated lung, allowing my breath to deepen from the bird-like sips of air I was previously taking in. Although still painful to breathe, this meant I no longer felt like I was suffocating. Praise baby Jesus! My nurses regularly encouraged me to cough, as to avoid a build up of fluid in my lungs, but the idea of that level of pressure against my bruised and wounded ribs was chilling. So, being the brat that I am, I would just look at them with you-gotta-be-shitting-me eyes, before letting out a pitifully weak, fake cough. This would usually be enough to be left alone for another day or so, before my acting chops would once again be put to the test.

Clover's room should get progressively messier.At this stage I was still “nil by mouth”, meaning I wasn’t allowed to eat or drink anything for 5-days’ post surgery. The eating wasn’t a problem, I was so out of it on medication and bloated beyond recognition that I wouldn’t feel like eating for weeks (Disclaimer: However effective, I do not indorse this as a healthy form of weight loss… unless of course muscle-wasting-chic is your thang). However, the lack of water was torturous. I wasn’t even allowed ice chips. On a really special day my concerningly pregnant nurse would lean over me and dab a water-soaked cotton bud onto my dry, cracked lips (the same lips she would occasionally slather a thick layer of my favourite lip balm on, to help them heal. The smell of which now makes me dry heave). I was pathetically grateful and lapped up those cool, droplets of water like heroin! Which incidentally, I was allowed, in the form of morphine. What a world! I began begging the nurses to give me even a tiny sip of water but it was futile. I remember finally being allowed some ice chips to suck on. I must have looked so hopelessly ecstatic because the nurse looked at me and let out a slightly sorry grin as she handed me the tiny cup of frozen heaven. I would place a single chip at a time in my mouth, savouring each morsel. One by one I would let them melt on my tongue, enjoying the cold liquid for a moment before letting it drizzle down my throat with utter satisfaction. Momentary sweet relief.

♥barf farm cult♥I don’t know how to describe the pain that could even provide a glimpse of the all consuming, relentlessness of it. It was pain like I have never known before or since, and hope to never experience again. It was pain that made you pray for death just for the relief. But it would be the unexpected losses, which I had zero control over, that would end up testing my already fragile mental strength to the absolute limit. I recall the actual decision making process that I went through just to be okay with giving over any and all remaining dignity, as well as trying to override my basic human instincts and needs. I knew that if I let my desperation or pride get the better of me in any way, I’d be ruined. I would not make it. So you just don’t let your mind go there. You can’t. You must accept the pain of being split in two, because you are already on as much medication as is therapeutically possible. You gratefully accept that fact that your pee drains into a catheter, because you are unable to even roll to one side on your own, let alone stand and walk to the toilet 3 feet away. And you must find a way to let go of any sense of ego, as you will now be whore-bathed daily by nurses you’ve just met (who, for some cruel reason, all happen to look like Victoria Secret models. Is that a perk of private health?). There is no ideal way to prepare for a challenge of this magnitude. I was just thrust in and started to pray (for the first time in my previously self-absorbed life) to everyone and anyone I could think of, that I would have the mental stamina to survive. I'm sorrySitting with intense uncomfortably and allowing things (everything) to happen to and for me, is a lesson I wish I could have carried out of that hospital, into my real life. Because if you don’t give up, what you find you are capable of is nothing short of superhuman. It’s completely fucked! But it’s astounding. It’s like you are forced to access this tiny corner of yourself that despite everything, still has the ability to find a little glimmer of calm, even though everything else in you wants to scream, cry and die. Let me be really clear. I am not special. I did not access this place out of strength, tenacity or positivity (lol). Quite the opposite actually. I found it because I literally had no other option. All the overt reactions that I desperately wanted to pursue, had been stripped from me. Calmness, found me, out of necessity. It was pure survival instinct.

haleyincarnate

I found being washed difficult. Not because I’m overflowing with dignity, in fact, I could probably do with a healthy helping of shame! No, more so because my body was so unrecognisable that I felt obligated to apologise and justify myself. Here’s something you don’t learn watching Grey’s Anatomy; it turns out when your body goes through such extreme physical trauma, it sort of ‘freaks out’ and all the fluid moves toward the surface as a protective mechanism. Don’t ask me the science behind it, but it’s essentially full-body swelling. Not dissimilar to when you sprain your ankle and it explodes into a cankle…only, everywhere. I found this quite confronting; and not only due to the exceptional uncomfortability of having my skin stretched to capacity like a human water balloon, or because my hands looked like someone blew up a pair of rubber gloves. Disappointingly, I was ashamed of my size (I can hear the eye rolls from here, trust me, I feel you!). Let’s attempt to make some sense of this utter head-fuckery, shall we? First of all, I am but a girl raised in an image-focussed world, which from the moment I first blinked was constantly reminding me that skinny and youthful is the only way to be worthy in this world (of what exactly? A man? Success? Existence? This part was never made clear to us women. It is seemingly unimportant as long as we resemble a Hadid or Kardashian).  Additionally, I had gone into surgery very thin, too thin in hindsight. As the “good” little, recovering anorexic that I was; I obsessively followed the all-organic, sugar-free, gluten-free, protein-free, joy-free, real-life-free, “cancer-healing” lifestyle (AKA mentally toxic diet) that had been suggested to me at Camp Cancer (not it’s real name)! So, when I woke up looking moon-faced and 6-months pregnant, it was (yet another) shock I was not anticipating. How’s that for a mind fuck?

.I think a lot of us have this idea that overcoming something as supposedly life-altering as cancer or a serious illness, guarantees us personal evolution and growth. Well, turns out…it ain’t that simple kids! *insert chain of expletives here* I was in a hospital with brilliant nurses who I was required to trust with everything from feeding me, to wiping my butt and here I was, worrying that they thought I was fat! Even in my morphine-fuelled paranoia I could step outside myself and see how insanely ridiculous that was, but fuck me, old habits die hard. Was I concerned about the foot-long scar that was now lining my back? Nurp. The fact that I would essentially be bed bound for the next 6-months? Hmm, not so much. I worried that my carers were gathering around the water cooler, talking about the HUGE bitch in room 305, as if they had nothing better to do! *Face palm*

On that incredibly discouraging note, I do want to add that 6 years on, the care-factor for how my body is perceived by others has decreased immensely. I am unsure however, if that is the trauma finally settling in and doing some helpful work, or if it just comes with age and experience. Like anything, it’s likely a mixture of many factors. This showed me that managing my expectations would serve me well. As yet, I have not mastered this fundamental skill, but hey, knowing is half the battle right? ….Right..? I was so disappointed in myself for giving a flying shit about my body swelling up like the elephant man, instead of directing all my energy into my healing. This was anxiety that was completely unnecessary and unhelpful. Photo of a Skinny White Girl by Jay Littman Proposed billboard-based art project in Los Angeles, CA meant to challenge beauty standards and other accepted values in contempory culture.The reason it upsets me so much is that I have seen it before in loved ones who have had terminal cancers. They are dying and yet further their suffering by devastating themselves over the weight gained from their steroids and other medications. It is truly heartbreaking and, in all honestly, I don’t know what we can do about it. How about diversifying the way in which women are portrayed in media, destroying all social media platforms (or why not the internet all together!), and taking down the patriarchy once and for all! Might be a good jumping off point? Who’s with me! … Yeah, this could take a while… 

Image result for he split robin's arrow in twain gifAs I was lying in my hospital bed stressing that I looked like a shiny, overgrown baby, my nurses were more concerned about how to turn, wash and moisturise me. I had to be rotated and marinated, like a pig on a spit, a couple of times a day as to avoid bed sores and help blood circulation, as I couldn’t move on my own. The problem was that my spine was in twain and still far to vulnerable to risk twisting it in any way. Therefore, it would take 3-4 nurses to perform said spit-roast… I mean turn. There would be someone on each shoulder, at least one person on my legs and hips and on a lucky day, I would even get someone to man my head. This was all just to roll me onto my side for a maximum of 20 seconds so they could scrub me down, lather me up with moisturiser, and quickly lie me back down. Look, I love attention more than Mariah loves a high note, but I did not look forward to these turns. I couldn’t breathe on my side as the pressure of the bed against my rib was too much for my weakened lungs to push against. I would have to time my breath right before they rolled me and hope I would have enough air in my lungs to last the distance. I only remember one time I was left on my side for too long and I started to splutter for air. I was just starting to pass out as the team of nurses returned me onto my back.

Amy Winehouse and her Father Mitch Winehouse the Thursday before her death. The last time they were ever together. Rest in Peace Amy. Gone but never forgotten.

For the most part, my nurses were wonderful with me; kind, gentle and sensitive in delicate situations. One was even so sweet while wiping my ass that I cried and wrote her a thank-you note! She was truly an angel and definitely in the right job. The doctors were different however. Obviously extremely talented and proficient in their fields, but often lacking patience and compassion to the same degree. I had a really horrible experience in ICU when the nurses designated to my bedside were unable to access a vein to insert one of my cannulas. My poor little veins were like dried up worms left in the sun too long, as I was so completely dehydrated. The nurses had tried numerous times in each of my elbows and just as I overheard them talking about shoving it in between my toes, in an ohmage to Amy Winehouse, a doctor came over in a huff. We were clearly wasting his precious time. I was high as a fucking kite and only 24-hours out of surgery at this stage, but even I could tell this guy was being a jack-ass! He was acting as if it was my fault for not having plumb, juicy veins and the nurses’ incompetence for not being able to access them. In his anger for being called down to perform such a ‘menial’ task he started stabbing at my wrist with the thick needle. This is the tattooed, pinup, badass that lives in my head. She makes this exact gesture with more frequency and vigor than I care to admit.I don’t know how many times he tried before he decided this was getting cruel and he went to get some numbing cream so he could continue his massacre. However, I do know that 6 years on, I still have 5 small scars on my left wrist from this incident. Just for comparisons sake, I had dozens of cannulas in each elbow and wrist over the course of the 2 weeks I was in hospital and hundreds of blood tests taken in the same elbow over my 2 years of treatment. Despite that, I do not have one single scar in any other area, other than where this c*nt-monkey butchered me. Again, I couldn’t cry, scream or tell him to go “eat a bag of dicks!” as much as I would have loved to, as this would only increase my discomfort. But there was no preventing the silent tears that were rolling down my cheeks. The nurses’ felt my pain and comforted me gently but they had no power in this situation, and neither did I. He probably thought I wouldn’t remember how he treated me because of the state I was in, but this was one of the most traumatic parts of the whole procedure and there was absolutely no need for it to be. I felt like an annoying, irrelevant, pin cushion.

[pinterest:.@ninaaxna]Unfortunately, this was not my only disturbing interaction with a doctor. This is tough for me to write, even as the over-sharer that I am. As even for me, it is hard to make sense of. After about one week in hospital, still in an extremely delicate condition, my primary surgeon came in to check-up on me and deliver some news. For context, I had only re-learned how to sit up at day 5 and attempted standing for the first time, around day 6 or 7. This is important, because had I been physically able, I would have flown across the room and beat the living shit out of his scalp-happy ass; Negan from The Walking Dead style. Trust and believe! But, I digress. He entered my room, where mum was sitting by my bedside. He had this strange, nervous grin on his face as he told me the medical team had been analysing the area of my spine they had just removed. I could tell he was dancing around telling me something important, but as he had essentially just saved my life, I was trying to be polite and attentive. I can not recall his exact words, because as he spoke my head filled up with so much burning rage that all I could hear was a high-pitched squeal and the pounding of my own heartbeat between my ears. But the general gist was this…

another sugar coated bullshitHe stood wringing his hands and standing with his back to the wall, as far away from me as he could physically get. Even as a 23-year-old, weak, immobile girl; I still must have looked fucking terrifying. Good. He stammered anxiously over his words as he told me that the vertebrae they had removed no longer contained the tumour they had cut me open to retrieve. I stared silently at him, oscillating between blind rage and complete heartbreak. My face must have been displaying this, because I’ve never seen a fully grown, highly accomplished man, so petrified in my life. There I was, lying in front of him in agony so severe that I am in and out of consciousness and he has just told me that I am and was, tumour free all along. What the actual dick? I felt like I was going to be sick. I fell into shock and although I didn’t feel in my body anymore, I heard myself ask all to politely, “So…why did you do the surgery?”, to which he nervously chuckled and replied, “I thought you’d ask that.”. DID YOU? Did you think I’d ask that?! My, your powers of deduction astound me sir! Fucking ass hat.

https://flic.kr/p/jf9omn | 7415 |  I Facebook page IIn reality, I have to give the nerd a break, but it’s tough man. He went on to explain that the treatment had been so successful in converting my jelly-like tumour into bone, that it had calcified it entirely. This was a good thing and what we had hoped the chemo would do, but it had exceeded expectations in its efficacy. I think it was assumed it would calcify the outer layer of the tumour but not the entirety. Therefore, they were shocked upon opening it up to find only more calcified bone. He further explained that had the tumour been somewhere less dangerous, such as a toe for example, he would have considered taking me off the chemo and testing whether or not the tumour reverted back to its previous, jelly-like state (which was the suspected outcome) or whether it safely remained as new bone. However, due to the proximity of my tumour to my spinal cord and the risk of paralysation, this was not a chance my medical team were willing to take. I understand this and could even make sense of it at the time, despite my anger and confusion. But in all honestly, I think I would have been happier just not knowing. I could have lived in blissful ignorance for the rest of my life…or at least wait until I have full use of my limbs again! The timing wasn’t ideal…

NellyRodiLabThis whole experience, both in the short and long-term, has taken so much of my health, happiness and life. Therefore, it’s almost impossible not to wonder what could have been. Maybe the tumour comes back and I end up having the surgery, leaving me in the same position I am in now… but maybe it doesn’t, and my life could have been so immeasurably different. Better. I know it isn’t that simple, and getting locked on ‘what ifs’ is a dangerous place to live, but when I look at my life before and after the surgery, I can’t help but think, what if we had just tried. Now, 6 years on and I am unable to work from living with sever chronic pain and trauma-induced fibromyalgia (me and Gaga alike!), my mental health is under constant strain, and my weeks are broken down into which day I see certain medical specialists. I desperately crave a life that isn’t dictated by how I feel when I wake up in the morning. It has been a long time. Way too long. And unfortunately it doesn’t seem to be something you get used to. Not for me anyway. I do not seem to be gaining acceptance of my condition or strength with time. In truth, I feel as though I’m eroding. I am tired; a to the bone, heavy hearted, just fucking exhausted, kind of tired.

So, from the bottom of my old, shrivelled heart, thank you for reading. This little blog gives me purpose and helps me clarify and confront parts of my life that I have been running from and burying for a very long time. I never really expected anyone to read, but you are, and it’s truely humbling. Whether you are simply reading, commenting on my writing or offering an insight into how you have been able to relate to my stories, it is all deeply encouraging. Every one of you who takes an interest in my writing contributes to my life in an extremely profound way. Once again, thank you. 

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The Cancer Chronicles Part 3: Surgery

Please catch up on Parts 1 & 2 of The Cancer Chronicles here first.

But if you can’t be arsed here’s the cheats run down:

Your Facebook posts. Truth. (By Michael Dumontier and Neil Farber)

After 18-months of experimental chemo which essentially transformed my ‘jelly-like’ cancer into bone (supposedly temporarily), I am now ready for surgery. The operation will remove the offending T6 vertebra and a corresponding rib, which have been entirely ‘eaten’ away by the cancer. Then I will have a full spinal resection which involves fusing my entire thoracic (mid) spine together with titanium rods (from T2-T8 for any anatomy nerds out there). No, I don’t beep through airport security, but yes, they did write me a doctors note “just in case”. Fun times!

 

23.2.2012 – Night Before the Surgery

15 Wallpapers para celular com frases inspiradoras! - Tudo para TudoI am lying in a large communal hospital bedroom with the rest of the patients that have been herded in the night before our various early morning surgeries. It’s eerily quiet, aside from the occasional painful groan, making the subsequent silence even more disturbing. I have been given Valium to calm my nerves and help me sleep but it hasn’t worked the way I had hoped. Instead of floating off into a sweet slumber I feel as though I am peering through the eyes of someone else’s limp body. My physical symptoms of anxiety have lifted but I am still hyper aware that I am waking up to a 9-hour surgery marathon; in which a large chunk of my spine and ribs will be sawed out, ground up, reassembled with screws, rods and “chicken wire” and I’ll be zipped back up, sans tumour. My brain is in full blown panic but my body is listening to reggae and smoking a doobie! Where the fuck was brains invite?

24.2.2012 – Morning of the Surgery

edie nadelhaft fine art: BLTCIt’s 6am when my family start to arrive to bid me their final goodbyes … I mean, wish me luck. They don’t look nearly devastated enough for my liking. I was expecting long-winded speeches of love and adoration, choked through held-back tears. But as the male half of my family are predominantly ‘on the spectrum’ and generally socially awkward, I accept my well wishes with an unsurprised grimace. Eventually I am wheeled into a small pre-surgery, private waiting room. Mum follows me in to keep me company and offers some much needed distraction through a little nervous joking. It is appreciated. I am quickly wrapped up in a body-length, inflatable, plastic sheet, called the Bair Hugger. Its entire job is to lie on top of patients prior to surgery, while warm air is continuously pumped inside, inflating it like a giant, warm, balloon. Heaven. The aim of this contraption is to raise my body temperature in preparation for laying naked in a bitterly cold operating room for the duration of the surgery. After all, I can’t be poking anyone’s eye out with my frozen nips! That would be an OH & S hazard.

my heartMy elbows and wrists start being hurriedly jabbed with several cannulas on each side. These will transport different concoctions I will be shot-up with throughout surgery and post op. However, as I have been “nil by mouth” for almost 24 hours by this stage, my veins are dehydrated, slippery and hard to locate. My arms have also copped a fair bit of abuse over the previous 2-years as part of the weekly blood tests I have been required to have during my treatment. By the fourth failed attempt at inserting my anaesthetic IV, the anaesthetist gives up and decides to knock me out with gas. Praise be! Mum and I are both trying to be brave for one another but her eyes start to well up as I am wheeled into the operating room (OR), and I let a very dramatic, soap-opera-esc, single tear fall from my cheek as I drift off. So here I am; after 3 years of chronic pain, chemo and distress over this exact moment, I was out. Let the show begin!

25.2.2012 – First Morning Post-Op (ICU)

♡Pinterest:Darlin-J

From this moment on things devolve into a bit of a blur. This is due in part to the IV of morphine being gratefully poured into my veins, as well as the uncontrollable physical pain that my body copes with by repeatedly sending me unconscious. It’s early morning when I start to come-to in the intensive care unit (ICU). A nurse tries to quietly perform my observations (Obs) without waking me but she’s unsuccessful, mostly due to the screams of bloody murder I can hear coming from behind the curtain opposite me. All around me I hear the incessant beeping of hospital machinery, randomly timed guttural screeches, and groaning I can only liken to the sound made by the zombies in The Walking Dead. Fuck. The second my brain wakes up the hell begins.

 I wake up reaching desperately for my throat. I’m choking. I feel unrecognisable pain everywhere. Everywhere. Pain like I’ve never felt in my life and it’s coming from all angles. But the overwhelming sensation is that I am suffocating. I look at the nurse by my side with wide, horrified eyes. My arms are filled with 3 to 4 cannulas each so it’s awkward and uncomfortable to lift my hands toward my throat, but I try. I must look like a Halloween mummy; grunting with arms outstretched, barley bending at the elbows and flailing hopelessly. I’m trying to simulate a choking action to tell her I can’t breathe. She gently smiles and tells me that my anaesthetic ran out earlier than anticipated and I shouldn’t be awake yet (sorry wot?). I want to scream, “Well I am bitch! Knock me back the fuck out before I knock YOU out!” but I can’t speak as I still have the breathing tube down my throat. It is propelling air into my lungs as they cannot breathe on their own while under the anaesthetic. Once conscious however, the brain wants to control your breathing again. So essentially, my lungs are being controlled by two parties who will not listen to each other. It. Is. Horrific. When the teacher says you have to do he essay again because it wasn't good enoughThe only way I can describe the sensation is by asking you to imagine a freshly caught fish. You catch said fish and plonk it down on the pier as it flops and writhes around, gasping hopelessly. It is so desperate that it flings its little body around, searching for water to help it catch a breath. Its gills frantically open and close but no oxygen gets in. It becomes increasingly desperate, taking quick, shallow, empty breaths, unsuccessfully. Nothing else matters, it is fighting for its life, and then… well you know what happens next. That’s how it feels to be conscious with a breathing tube down your throat. Like a hopelessly, desperate, dying fish.

✧pin & insta | @ninabubblygum✧I instantly regret having the surgery and wished with every fibre of my being that I would die. Please let me die. I don’t want to let myself cry because if I cry my breathing will further alter and I am sure the small amount of air I am currently sipping in will be lost. So my eyes just well up to the brim (or should I say bream…sorry, inappropriate) and let tears pathetically slip out. The nurse wipes them away as I stare daggers at her, and calmly tells me “it will all be okay“, and that “the doctor will be down to remove the tube in 2-hours, but for now I am too weak to risk removing it. I am in disbelief. She’s going to leave me here suffocating, spluttering and praying for death for two more hours?! I would tear this bitch a new one if I could move anything but my eye balls, but instead, all she gets is the stink-eye of a life-time. Huh! That’ll show her!  Please, I’m begging you, let me die

4-hours Later

 My blood pressure remains dangerously low, so I am kept on the breathing tube for what ends up being the next 4-hours. I employ every bloody bullshite meditation/ calming/relaxation tool I’ve ever learnt in my years of yoga training and psychotherapy, but all I can do is watch the clock tease me as seconds tick by like days. Occasionally I am blessed with unconsciousness, most likely from the systemic pain or perhaps the lack of oxygen that comes from breathing like a dying amphibian. Each time I come-to I desperately hope that the clock will tell me an hour has passed, only to find it has been just a few minutes. This happens torturously often, until finally I am told it’s time. Halle-fucking-lujah bitches, the tubes-a-coming out! It has taken all of me to resist yanking it out myself, unlike Kourtney Kardashian pulling her own baby out from her ‘special area’ (true story), and it’s finally fucking happening!

\//\\//\\//\\//\\//\\//\\//\\//\\//\\//\\//\\//\\//The foot-long, plastic tubing is gently slid from my throat and I am filled with anticipated relief. I am encouraged to “breathe nice and deeply” as to prevent fluid settling in my lungs, resulting in pneumonia. I eagerly take my first breath and gasp gratefully for air, but am instantly met with sharp, stabbing pain in my sides and return to my horrible but safe, dying fish breath. Nothing has changed. Nothing has changed!?”, I bark in a panic at the heavily pregnant nurse, stationed constantly to my bedside. Well not nothing, now I can speak. Now I can choke out, “am I fucking dying!?”, and WHY is a woman whose water is about to blow at any moment, my primary carer?! GO HOME!”. But I don’t… I’m too exhausted. I go back to staring at the clock tragically and stifling back tears. I lost 10% of my blood during surgery, my body feels like a dead weight. I don’t have enough energy to lift my finger, which feels like lead, much less to yell and scream out, “Help me!”, to a woman who probably has feet swollen like water balloons and yet is here, caring for me.

@antiihero ¡¡It turns out the breathing tube was only a minor part of the breathing problem. Who’da cunting thunk it! I have tubes and wires coming out of every obvious orifice and just because I clearly don’t already have enough holes in my delicate female body, they have decided to create a few more. The one in question being a drainage tube wedged between my left lung and ribs to reduce fluid build-up. My lung was partially deflated during the surgery as it was in the way of getting to the tumour. This meant that now, every breath inflated my lungs (as breathing is known to do), causing them to push against my rib cage and crush painfully against the drainage tube. It’s reminiscent of the sharp pain of a stich in your side, if like, you were also getting stung repeatedly in the throat by a dozen angry wasps, and fire ants were eating your organs from the inside out. Oh, and you have emphaseema. Yeah, that pretty much sums it up! I was handed a folded up towel to press against my ribs for supportive pressure as I breathed or God forbid, coughed, sneezed or vomited. It would be two days until the drainage tube was removed. This meant two more days of breathing with the ‘death rattle’ that I had only ever witnessed once before; in a loved one, days before she passed away. Two more days of watching that arse-hole clock tick tortuously in front of my face. Two more days of trying not to cry through the most all-consuming pain I’ve ever endured. Please, for the love god, let me die.

 I think this was the day I gave up striving (or was it fighting?) for everything I believed I was owed, just by purely being alive. This was the moment I relinquished all control and any hope that we have the ability to create the life we desire by simply working hard and being a “good girl”! I had been a girl who grew up controlling every morsel of food I ate, every anxious word I spoke and every single move I made was born out of an idealised future, planned years in advance. I worked hard at school, didn’t smoke cigarettes or take drugs and I had big dreams and ambitions. But then here I was. I had been “good” to the point of turning myself inside out my entire life. “Perfect” to the point that it had almost killed me as I starved myself in an attempt to be ‘beautiful’. And yet, nothing I loved or desired was manifesting itself through my blood, sweat and tears. My dream to be a singing sensation was on hold because it turns out, it’s very difficult to sing opera with a tumour pushing on your lungs. My yoga career was suspended indefinitely, as it’s unwise to bend yourself into a pretzel when your spine is essentially made of jelly. My boyfriend was pulling away  because my cancer reminded him of his mothers death. And now, all I wanted to do was cry and I couldn’t even do that for fear of passing out from the pain! Well, FUCK THIS!

Modern Love – Les relations destructrices de Peter Nidzgorski | Ufunk.net

Unfortunately, I’ve never been one to do anything by halves or learn the meaning of the word “balance”, so releasing my inner control freak did not result in a calmer, more laid back version of me. I went to the extreme (surprise, fucking surprise). I didn’t find freedom in letting go, I found resentment, bitterness and anger in the discovery of the random unfairness of life. I started to see that things don’t always happen for a reason. You’re not always going to grow and learn from some tragic life event. There isn’t a finite amount of shit that can be flung at you before it turns around and life becomes sunshine and ice-cream-shitting unicorns! No. It’s fucking morbid and maybe (hopefully!) it’s just me, but this event was the first of many that taught me that life is seemingly just a random cluster-fuck of moments, that sometimes we can influence, but often we can’t. And as an eternal control-freak up until this point, that Pissed. Me. Off.

 I flipped life on its head and somewhat unconsciously became the “anti-me”. Fun fact! It turns out the opposite to the permanently anxious, ridged, “good” girl version of me is a loose-moraled, highly corruptible, wildly volatile, life-of-the-party “bad” girl… and she’s as fun as she is insane!

In the words of Tay Tay, “The old [me] can’t come to the phone right now. Why? Oh cause she’s dead.”

To be continued…