“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

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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 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…

 

 

 

 

 

Life on the Borderline: living with BPD

The other day my favourite human sent me, what was for him, a really simple, throw-away text message. We were texting back and forth for hours, as we do, while simultaneously bingeing on some trashy Bravo T.V. goodness (#lifegoals). Lisa Rinna -I made a comment about the most recent idiotic/impulsive decision I had made and after thorough personal analysis (hours of obsessive torment), I concluded it was probably driven by the total lack of emotional regulation that comes from my, oh! so convincing and always ‘interesting’; borderline personality disorder (BPD). If only blaming all my troubles on mental illness stood up in a court of law… ho hum! It is unfortunate, but the only mental illness I am still worried about being stigmatised for is BPD. So naturally, I must write about it. I have been told that many doctors refuse to treat it as they see it as a hopeless case. I’ve been marked as an ‘un-dateable’, being told “I can deal with the bipolar but NOT BPD!”.  And honestly… I get it. The perception of the condition is that of a selfish, manipulative, highly sensitive, suffocatingly needy, soul-sucking-dementor and quite frankly, that image isn’t entirely wrong (except in my case I tend to feed on the human heart, as opposed to souls. Just a personal preference). It doesn’t matter how I dress up or rationalise my volatile outbursts or ‘irrational’ behaviours (but by golly I’ll try!); like how they stem from issues of abandonment rooted in childhood, or how I can justify the fact that my ‘positive’ emotions are just as strong as the ones that make me act out. Meaning my capacity for love is so great that Romeo and Juliette would pale by comparison! It’s irrelevant, because at the end of the day, I am erratic and unpredictable and that makes people uncomfortable. To 8F4F915C-A13E-4920-94C9-87C80080BB78quote Rhianna, I can go from “zero to sixty in 3.5” and it freaks people the fuck out! I prefer to think of myself as an acquired taste, like foie gras or that fish that will poison you to death if you eat the wrong piece…but mostly it just means I am seen as rather off-putting, dangerous and unnecessarily over-the-top. So, when my bestie casually text me saying “Your BPD is my favourite thing about you.”, the kid got me shook! I don’t think I had ever felt so completely accepted by anyone in my entire life. Okay, I’ll level with you, there’s no denying he is a total fucking weirdo himself, but hey, all the best people are…

You're My Favourite Mistake (Blue) Limited Edition Print, Rebecca Maso – CultureLabel

I’m an open book. If you’ve read any of my blogs you know that I ain’t holding back, but when it comes to my relationships with people, I won’t lie, it’s difficult. I’m difficult. I have many acquaintances and very few close friends. Don’t get me wrong, I’m a riot for a night out! Take me to a party and I will own that shit! Jokes are on fire, I’m looking tight, charm-factor is turnt up, I know how to use words like turnt and lit. For a night of debauchery and fun, I’m your girl! But, as the trail of ex-boyfriends I’ve left behind will attest to, I’m hard work long-term. “Exhausting” is a word I’ve heard a lot. In fact, this isn’t easy to write, as the majority of my brain glitches stem from my intense fear of abandonment. There is the rational fear that reading this could potentially push the few people I hold dear away and prevent me from becoming closer to others. But as someone who knows what it feels like to carry the burden of BPD, I think it’s important to be assured that we are not alone and we are loveable. There are other weirdos out there just like you, who will understand you and see your ‘flaws’ as your greatest superpowers! On a completely unrelated note: PLEASE DON’T LEAVE ME! I LOVE YOU! I’LL LOVE YOU TO DEATH!

Love me | neon

If you’re unfamiliar with BPD, a quick google search is sure to scare your thong right off (if I haven’t done that already). But unless you are a truly extreme case, it tends to blend so fluidly into our personalities that we are often simply seen as sorta kooky, dramatic and highly sensitive. The creative type, if you will. As the child of a very charismatic drama teacher and an aspiring thespian in my own right, this worked in my favour a lot of the time. maconmesmileIn primary school my music teacher labelled me “the girl of a thousand faces!”, because I was a different person everyday. Nowadays, I’m pretty sure there is medication for that… However, as much as I could hide my constant need for validation and acceptance as a desire for the performing arts and stage, I couldn’t hide the fact I was still a little odd-ball. Being a sensitive child who showed vulnerability and reacted to said bullying, oh man, I was Christmas, New Years and Hanukah all in one convenient package for a kid with a chip on his or her shoulder! It was like I wore a florescent sign on my head that constantly flashed “if poked, will cry!” and boy did they poke this bear.

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As a kid I was told I was too sensitive, a “drama queen”, or an attention-seeker on a daily basis, both by other children and teachers. I incessantly heard that others felt they were “walking on eggshells around me”. That’s always been a comment that has bothered me. As a kid with limited processing resources (shit, as an adult with limited resources!), all I heard was “your reaction to this event is over-the-top and therefore wrong”. This is a really scary feeling as a child because all we have to process the world is what we are taught and what we feel. But, no one is really taught feelings (or if they are, I missed that class). So there I was, already upset about said ‘event’ (lets say someone threw an orange rind at my head and I felt picked on), but then I start to cry or yell at the perpetrator and I’m told to “get over it” because it’s just an orange rind and I’m “overreacting”. But wait, now I’m confused because to me this reaction feels totally justified!? So now I am doubly upset because not only was I upset about feeling targeted but I’ve just been told that my feelings are wrong. Only now I can’t let it show that I’m upset or stand up for myself, because I’ve just learned that those feelings are invalid. So I end up suppressing my humiliation and confusion until it is no longer possible and it blows up in the next persons face who does or says something slightly off colour to me, causing the cycle to continue. She was not fragile like a flower; she was fragile like a bomb.As a child it is frustrating. As an adult it feels like gas-lighting. But as a bonifide mental person it causes either and implosion or explosion of emotions as I attempt to figure out how to react. What is a “normal” response to this? What is justified? Will I end up gas-lighting myself and allow myself to be walked over for fear of a disproportionate reaction? Oops, decisions times up, BLAM!!! This process essentially repeated itself for the next 20 years to varying degrees of intensity, until I became the all-too cliché substance-abusing, in-and-out of psych wards, unemployed, pushing-30 and perpetually-single (but still highly attractive in that Angelina-Jolie-in-Girl-Interrupted-type-way), gal you see before you! C’mon fellas! Put a baby in me!

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Basically, this very basic example taught me that I ‘lifed’ wrong. That I was wrong. It meant that for the rest of my life I would never feel like I “fit in” which would flip/flop me between feelings of grandeur, like I was the fucking Queen of England…but like, a young, hot version! Or, I would feel like a worthless, hopeless, useless piece of hideous, gutter trash. I was never just, simply fine. To this day I still struggle with this. It has gotten better, but it will always be work because I will always be work. There will never be a time I am not in some form of therapy and working on myself. If that day comes I better be Ghandi-meditating-in-a-cave-in-the-Himalayas-level tranquil because the only other option would be that I would have given up and the reality of that is far to real for many people living with BPD (and other mental illness).

Wallpaper PSYCHO | Galaxy Gran PrimeI recently learned that 70% of people with BPD will attempt suicide at least once in their lifetime and 10% will be successful. What the actual fuck?! I know cancer patients that have better odds than that! The stats for bipolar are similar and if you have more than one mental illness the percentage significantly jumps up again. I believe suicide is such an issue, not only because the condition itself can make average, daily encounters unbearable but also due to misdiagnosis. Most people are diagnosed in their 20’s, meaning they have had at least two decades of deeply rooting in poor coping mechanisms and habits before they can even attempt to heal, which itself is a slow and arduous (some will argue impossible) task. Doctors and Psycho’s alike have usually labelled us with a number of other disorders throughout our youth, like anxiety to explain our intense neediness, depression to understand our insatiable loneliness, and/or bipolar to make sense of our rapidly fluctuating and unregulated mood swings. No wonder all my ex’s individually came up with the descriptor “rollercoaster” for me! And there I thought it was because I was such a fun ride! *wink* Heyyyowwww!

im lost please dont find me

Personally, I have experienced suicidal ideation for months and years at a time. If you haven’t, I am unbelievably relieved for you and if you have, from the bottom of my heart I’m sorry and I am here for you (I mean that, hit me up if you feel alone). It is nothing short of torture. I recently saw one of my doctors and she was so pleased to see how well I was doing because less than 2-months ago I was done. Out! I was about to call the loony bin to check me right back in and give me a vegetive-state-enducing lobotomy! I have worked really hard on myself in that time but even I am surprised by the progress this time around. Today, I can honestly say I feel better than I have in years, both mentally and in regards to the chronic pain and fatigue conditions I live with (which have a cyclic effect on my mental health too). However, I know how quickly things can change. I know how quickly I can be triggered into a reaction that could take me right back to square one.
pinterest: @astheticprints✌︎☾I’m not going to tackle the debate about whether or not suicide is selfish or justified. Not today anyway. I have very alternative views on suicide (and selfishness too actually) and I think I’ve opened enough room for debate in this blog already! Nevertheless, I will say this. Two years ago my mum came into my room after hearing me whaling in agony. These screams were guttural, coming from the deepest pit of my stomach. I have never felt so much pain in my life. The 9-hour, full spinal resection I endured a few years earlier would have been a relief. No word of a lie. This whaling was not a once off. This was every. single. day. for an entire year and I had well and truly surpassed my breaking point. The thread I had been holding on by was long gone. I had lost (to death or perceived abandonment) so many people in such a short amount of time and I was completely and utterly heartbroken. Maybe it’s because of my wavering mental health that I felt it so intensely, I’ll never know, but I have been through cancer, the spinal surgery, addiction recovery/relapse, anorexia, rape, chronic pain and so much mental health bullshit I should have my very own Dr. Phil on speed dial; but heartbreak is the most excruciatingly painful experience I have ever been through.

 ✨ "yσυ dσи'т нαvє тσ รαy 'i lσvє yσυ' тσ รαy i lσvє yσυ." ✨Mum sat quietly at the end of my bed as I looked up at her from behind red, puffy eyes, exhausted from tears, and I begged her to let me die. I was calm now. I explained it all; how it would benefit the family and free me, how I was in such excruciating pain. How I could physically feel my heart tearing apart and my stomach sickly squirming and clenching without a second of respite. How deeply angry I was and how I felt it was cruel to keep me alive when I was in such all consuming agony. Honestly, if I had been a cancer patient I would have been on life support. I was terminal. I can’t imagine what it felt like as a mother to watch the child you brought into the world suffer in that way and be ungrateful for ‘the gift of life’.
Let it be known that my mum is one strong-ass Queen to be mother flipping reckoned with!

First Dance.In her desperation she said the one thing that she knew would work when nothing else would, when not even a mothers’ love was enough, you will destroy your brother.”. What was left of my heart dropped to the floor because I knew she was right. We’d just lost our dad. My brother and I had been best friends our entire lives.
One would not survive without the other. As much as she wanted to, mum wasn’t able to fix my pain but she provided, what mums do best, a little guilt trip (omg JK! Not the time? :/ ), that lasted just long enough to keep me alive and those few words have helped me many times since. I won’t lie, I still fall into extreme depression at times but the decision is made now and there is no going back. I will never commit suicide. As bad as I may get, I will drag myself kicking and screaming to therapists and psycho’s, psych-wards and hospitals. I will allow myself to stay in bed for days and weeks at a time and exist solely on cereal and peanut butter if that is the only way I can work on my number one priority, survival. I will do whatever it takes to continue to find the tiniest little spark of hope inside that has helped me remember myself in the past and launch it into a blazing fire, because I have no other choice. I only have my mum and my bro left and let’s face it, they would be completely lost without me (or at least really fucking bored!)! I may be a nutcase, but I’m sure as hell fun! 

You're interesting

 

*Loss – Referring to loss through both death and relationship breakdowns. To a person with BPD both are perceived as abandonment.

Suicidality in Borderline Personality Disorder – This is a really simple and clear article I found about suicide ideation in BPD for anyone who wants to learn more.

Suicide Helpline – Lifeline Australia: 13 11 14

The Cancer Chronicles: Part 2

NOTE: For this to make sense please first read The Cancer Chronicles: Part 1 here.

the print on my bedroom door (by silvia pelissera - agnes-cecile)
Of all the differences my father and I had, we shared two important things in common; we were both undiagnosed bipolar for most of our lives, and our destructive/obsessive tendencies were idealised as passion and determination. This meant that as an intensely and often irrationally anxious child my fear of failure was fostered and admired, eventually letting it overrule and guide my every move. Sure, this had some positive influence in my life; while all the other high school kids were smoking cigarettes behind the soccer oval, I refused to take a puff for fear of damaging my oh-so-precious voice that was certain to make me millions one day! Mean Girls.By the age of twelve I had already decided I was going to be a superstar, just like Charlotte Church or Britney Spears (clearly prior to their subsequent meltdowns which, ironically, ended up likening much more to my life story after all…). I couldn’t see the value in risking what I believed was my destiny for something as trivial as looking cool. Besides, I would have plenty of time for that when I was selling out arenas world-wide! Of course, as the slightly overweight, boofy-haired, choir dork that I was, I never had to worry too much about my coolness factor getting out of control. On the other hand however, that obsessive drive that constantly simmered inside me, provided me with the “strength” (crippling anxiety) that led to a fierce battle with anorexia. Tell me one more time how it’s a shame because I have such a “pretty face” and I’ll show you another meal I replaced with a Berocca or sugar-free gum (damn, adults can be c*nts)! All this to say that I had a goal (fame, fortune and admiration… obvs) and I was willing to do whatever it took to achieve that. Even proudly starve myself to the bone.

I was well aware of my addictive tendencies growing up. I’d make silent pacts with myself not to get tattoos, or smoke, and plastic surgery was out for fear of winding up looking like a Real Housewife before they really figured out the secret to good lip filler (no disrespect Lisa Rina, you know I love you)! I remember trying speed for the first time and thinking “Holy fucking, fuck-tits batman!”, (or something to that avail). I loved it so much that I instantly vowed never to touch that beautiful nose candy ever again. I knew there were only so many times I would be able to say no before I would never say no again. Suffice to say, I had a thorough life plan mapped out and being a cancer-ridden junkie was not part of it. Jokes on me I guess…

미르자 @mirzhnaniaaaI was practical with my diagnosis. I never asked “why me?”. I had no time for a pity party. I just wanted to move forward so I could claim my life back and get back on track with the immaculately detailed ‘life plan’ I’d been working on since I was 5. As I saw it, I had already wasted enough time from pain to diagnosis. Now I had to spend another 18-months on the drug trial before I could even think about having the surgery and finally begin the lengthy recovery process. When was I supposed to achieve world domination? A girls got shit to do, damnit! I wasn’t allowed to work anymore as it was too risky for my health, but all I could hear in my head was the incessant tick-tick-tick of time passing me by. I’d gone from working 4 jobs like an ADD kid off his Ritalin, to watching reality T.V. for 9-hours a day. I was loosing the fucking plot.

I desperately tried to tell myself that this was some kind of test to help me slow down and learn to smell those bloody roses enlightened people are always on about. But, in my mind I had been late for “success” since my sixteenth birthday so every second that wasn’t utilised felt like a failure. @allisonnickel2Why sixteen you may well ask? Sixteen is nothing more than an arbitrary number I plucked out of my arse as a kid, when I obnoxiously declared to my father that that would be the age I would achieve the afore mentioned superstardom and/or world domination (either was fine, I wasn’t picky). I stored his bemused smirk in the ‘I’ll-show-you’ compartment of my brain and let it fuel the fire in my pre-teen gut. Because that’s what I needed, more reason to kick my own arse! So at 21, already 5 years late to my utterly delusional and completely imagined concept of success, I was essentially in a constant spiral of rage-jealousy and/or depressive-failure. Here’s a tip kids; have low expectations. Seriously. Can we please stop teaching children that if they work hard they can achieve anything, like we’re fucking accolade cheerleaders? It encourages perfectionist behaviour, cultivates a fear of failure, builds pressure/anxiety and it’s simply not true. In my humblest of opinion…

Vertebrae bones A3 poster anatomical art Human anatomy by PRRINTAlthough a habit I still struggle with today; those reality T.V. marathons did teach me something. When I wasn’t watching Heidi and Spencer (Speidi; for the die hards) on The Hills, I was addicted to Celebrity Rehab with Doctor Drew (I believe they call that irony…). To this day, still one of the greatest shows of its time; not to be outdone by Sex Rehab with Doctor Drew or the classic spin off, Sober House. Ahh, they were simpler times! What I learned by watching Grease’s Kenickie go through his tragic and ultimately fatal battle with opiate addiction on Celebrity Rehab, is such; spinal surgery is dangerous and excruciating, pain killers are addictive and sexy pilates instructors can make you feel better momentarily, but ultimately you will die a slow and agonising death. Shit. With this in mind I went to my next appointment at the cancer clinic armed with questions.

미르자 @mirzhnaniaaaI sat in a sterile room with my father and the head of my clinical trial, who essentially was my dad, 20 years and 30kgs ago. These two autistic nerds talked excitedly to one another about the wonders of modern medicine while I sat there, doing my best imitation of a slightly animated test tube with stuck-on googly eyes. I was worried. I thought back to that first line of speed and simultaneously felt a pang of fear and excitement, which rang danger alarms in my head. I was young but there are parts of me I knew better then than I do today, or at least used to listen to. I just knew if anyone was going to get hooked on pain pills it would be me. I didn’t have time to waste getting wasted! What about my goals? My plans! What’s that saying? ‘We make plans and God laughs’. Years on and “God” is still pissing herself laughing like a mum of triplets in a Zumba class at me! Bitch.

VALLEY OF THE DOLLS PILL POPPING NAILS BEAUTY SHOOT | Jamie Nelson Beauty & Fashion Photographer | September 4, 2015  ❤༻ಌOphelia Ryan ಌ༺❤When the nerd-lingers (or the super-important-men-who-were-actually-saving-my-life) finally remembered there was an actual living, breathing patient in the room, I had the opportunity to ask how most people fair coming off the post-operative drugs, namely the opiates (oxy’s). I was swiftly assured that as I start to heal and feel better I will simply not need them anymore and will naturally wean off. Simple. Natural. Easy… I internally groaned and externally rolled my eyes, knowing that wouldn’t be me and instead I was much more likely to be another fucking Kenickie; wheelchair bound and screaming at nurses in a rehab facility by 50 (flash forward 6 years; turns out I’m way more efficient than Keni and would be found doing this by age 27, never to be outdone). I couldn’t bring myself to push the subject in front of my dad, who innocently suspected I was a majestic earth-bound angel, who radiated purity and bliss. And although he wasn’t too far off, I wasn’t about to shatter his illusion, so I shut my mouth and never mentioned it again.
 By this stage I was starting to get angry at the world. My friends were all at the stage of their lives where they were graduating from their degrees and entering the work-force for their first real adult jobs. Their biggest concerns being where to have Saturday night drinks and if their new colleagues would like them. And then there was me; unable to work, isolated, bored to literal insanity, suffering intense pain and pumped with experimental chemo and pre-surgical pain killers. Not to mention the typical angst an early 20-something feels anyway as they try to spread their wings for the first time to leave the nest, only in my case, them wings done broke! This is where Schmoo and I really leaned on each other. We were two young, fierce and fabulous gals about town who, at this stage, still looked “normal” AKA healthy. We could still function relatively independently and our main disability was everyone else’s inability to understand what we were going through!

Schmoo was always a vison. Just to sit down at our local soup joint she was always dressed like an off-duty supermodel in understated designer clothes, immaculate jewellery and smelling like something I definitely couldn’t afford. I’d sit there in my no-name, see-through leggings that I’d been wearing since I was 14 and she’d just laugh with that whole-body cackle that was signature Schmoo, as she called me a pauper and paid for my coffee. Occasionally she’d let me pay, just to make me feel like the baller I certainly wasn’t. It was appreciated.

 

Every week we would get together and bitch about how our families couldn’t possibly understand us and our friends were so lucky they didn’t have cancer, and basically just vent about the shit-storm that was our lives! love, grunge and sad image on We Heart ItAnd in doing this, we laughed, a lot. These conversations were some of the most cathartic and hilarious of my life. Of course nobody could relate to us! Who the fuck gets cancer in their early twenties and ends up making besties with another cancer-kid?! Nobody, that’s who! We knew that, but we were each others’ outlet. A safe place to release our pain, frustration and vent about everyone and everything that pissed us off. Our socially inept doctors, our mountains of medication that made us rattle when we walked, our isolation and loneliness, our stupid boyfriends who were trying so hard and yet failing so spectacularly, our friends and their “trivial” problems which, in reality, were completely justified but let’s face it, cancer’s hard to beat! Together we would laugh about all the mother-fuckery that had become these lives that we no longer recognised, and in that we found some relief. I can’t imagine going through this experience without my Schmoo. We were two extremely unfortunate kids who found some hope in each other and in that, we were lucky.

you literally make me a mess and i hate it... i lied it's the best thing that's ever happened to me❤️

There used to be this homeless man who would occasionally walk past our soup bar and stop for a chat. Nice guy, if a little kooky. One day he sat down with Schmoo and I and started telling our fortune. He told me I hadn’t yet met the man of my dreams and that Schmoo would live into her 90’s. Unfortunately, that wasn’t the case but I believe it gave her enough hope to keep “fighting” a little longer. He spouted a lot of insane shit for about an hour and although we suspected it was 99.9% bullshit we tipped him generously for his entertainment and kind distraction. I hate that word fighting. Like all it takes to beat cancer is brute strength! I’m telling you, if that’s all it took Schmoo would’ve had me beat 100 times over. Nobody fought as hard as she did. Nobody loved life as much as she did! She was just hungry for every experience she could sink her teeth into. I admired that in her so much and I desperately craved that in myself. The girl had 5 brain surgeries over 4 years, spent a year as her own nurse attached to an IV bag that constantly dripped chemo into her veins, had her skull literally fucking cave in on her and was still able to meet and marry the love of her life. That’s right, while she was travelling the world for all the most cutting edge medical treatments available (oh, did I not mention that? Yeah…that too), she was also planning her spectacular dream wedding at the same time! She. Was. Unstoppable. I on the other hand spent most of that time in the foetal position, moaning and discovering how to shovel oxy up my nose. Each to their own I guess!

Survivors guilt is a real thing. I generally find existence extremely difficult. I’ve got a brain with a few faulty wires that prevents me from regulating my emotions, so I’m basically a constantly swinging pendulum, my body is the Queen of the malfunction and I live in a fairly perpetual state of existential crisis. Yeah, I’m a blast! I can’t tell you how may times I looked at my Schmoo and wished we could trade places. Give me the terminal brain tumour and let her live the fabulous, travel, adventurous, wildly sexy, exotic foodie, life that she would have lapped up! But it wasn’t the case. I don’t know if I believe in meant-to-be’s and what not but I do know that if Schmoo was in my position, if she had been the one to survive, that she wouldn’t waste her second chance pissing around like a depressive little twat. What she would do is exactly this. She would write. She would write about her exeriences great and small and rather than be egotistically driven for world domination and fleeting Lindsey-Lohan style fame, she would want to make an impact. She would want to place her stamp on the world for something meaningful. So… here’s me doing just that*!

* Originally I wrote “Here’s me trying” but I instantly heard the Schmoo in my head saying “Trying!? There’s no such thing as trying! Just do it girl!”. She didn’t do anything by halves and wouldn’t accept it from anyone else. She was the most inspiring person I’ve ever met and I’m lucky that I have her voice in my head everyday, continuing to push me, encourage me and elevate me to have the best life imaginable.

Love you Schmoo and so much love to the Schmoo Clan, both family and friends.

 

 

The Cancer Chronicles; Part 1

Melody Ehsani Shop Neon Sign (Fairfax District)
At 20-years-old, I fell in love with a boy. Very early into our relationship we learned that his gorgeous mother had developed a tumour in her brain which, within only several months, would take her life. Prior to this experience the concept of death was relatively abstract to me. I’d lost pets, distant relatives and was a complete mess when Mufasa died in the Lion King (spoiler alert). At that age I’d never watched anyone deteriorate in front of my eyes, or held someone’s hand as they breathed the words, “hopefully tomorrow…” when praying for their own death. I’d never watched someone I love, completely tortured by helplessness for a dying parent, friend or child. These days however, I can’t say the same. I have been heavily exposed to loss and even had to process the concept of my own mortality several times throughout my 29 years. Even several months before my dad passed away he told me that I’d seen more death and illness than anyone he knew. So much so, that I labelled 2016 ‘The year of 1000 deaths!’ and was convinced that I’d somehow been cursed by an evil witch to turn everything I touched into dead. Worst. Superpower. EVER!

5,474 "Μου αρέσει!", 34 σχόλια - Psychedelic and Visionary Art (@psychedelic.paint) στο Instagram: "“I said, Goddamn!! ✨✨✨ . . Art by @mohamedsobeha #psychedelic #psychedelicart #marijuana #art…"

I’ve been through the stages of healing into a “survivor” and subsequently crumbling back into bitterness so many times that I don’t even know where I stand anymore. I drift somewhere between grief and growth with occasional drunken rage black-outs where I desperately want to stab someone in the eye with a fork. I don’t know much of anything, but one thing I have learned is that grief is not linear and reactions are so individual they often appear nonsensical or unrelated to “real life”. I think we have this image that when you go through something major that you will just wake up more highly evolved than you were before. But in fact it tends to be a more agonising, chipping away at your heart and soul until you either develop a thick skin to survive, or if you’re me, develop a pretty intense addiction problem and file life in the too-hard-basket of your brain for several years! However, at 20, I still had the blissful ignorance of youth on my side which made this primary experience with death extremely overwhelming and confronting.

COLLAGE CON SUPERPOSICIÓN DE TEXTURAS (no es por la obviedad en la foto)

Simultaneously, as I was learning of the fragility of life and the rapid transition from health to illness and illness to death; I began to develop quite sever, chronic and acute back pain. I’d been teaching yoga for a couple of years at this point and assumed I had contorted myself into a pretzel one too many times and badly pulled a muscle. But after months of crying in agony for my mumma and seeing every specialist under the sun, my GP decided it was time to investigate further and get some scans done. As I lay in the CT machine for the first time with an IV of dye being pumped into my arm, the lab technician leaned over me and delicately said, “Now, don’t panic but…” (always a great way to stop someone from panicking), “…there is a chemical in the dye that’s going to make you feel like you’ve wet yourself. You won’t, but you will reeeaaally feel like you have.” (Brain to self – wot dis bitch say?!”). I’ll let you use your imagination for how that all played out. Fucking dye.

Control Your Tongue by LiL-CaRzY-BiZzO

The pain was unbearable and had been going on for almost 6-months by the time I was finally sitting in front of a solemn-faced doctor. I had been through pretty much every possible scenario in my head, so I thought I was prepared for what he was about to tell me. I was just desperate for an answer by this stage. Unfortunately, that answer was cancer. Only months earlier we had buried my boyfriends’ mum and now here we were, staring down the barrel of the gun again.

My doctor talked at me as I entered that state people go to in movies when they receive bad news. You know the one; there’s that loud, high-pitched ringing in your ears, your sight fades into tunnel vision, your freezing but covered in sweat, it’s like there’s a bowling ball in my stomach and a desert in my mouth (okay, now I’m just quoting Tori Amos). From what I pieced together from subsequent conversations, I had an extremely rare form of spinal tumour. Seriously, trust me to just need to be different! Even with cancer I’m extra.

humourAs a creative and arguably interesting woman it is so indescribably frustrating when something you literally have zero control over becomes the most fascinating thing about you. I mean really, if I’m going to be getting any attention at all it better be for my witty intellect… and dis sweet ass (obvs)! While I’m up here on my soap box, let’s look at the word “inspirational”. I always struggled with being called this during my cancer “journey” for lack of a better word (kindly punch me in the face with a thesaurus next time you see me). Of course it’s always nice to be described as inspirational, but it’s a strange compliment to receive for being sick. If it was for my writing or my music, or someone took one of my yoga classes and suddenly burst through this most basic evolutionary plane into enlightenment, then by all means! Feel encouraged to feed my ego with #inspo posts. But… I literally did nothing. In fact, I did less than nothing, I malfunctioned resulting in cancer. I wasn’t even strong enough to be a martyr about it! I complained about it…a lot. I was a massive jerk for years because I was in agony and I was scared. There was nothing inspiring about how I handled cancer.

⚠️follow me: ☞ bbgxloni☜⚠️So my super unique, inspirational tumour had eaten away an entire vertebra in my thoracic spine (T6 for any anatomy nerds out there), as well as a corresponding rib. I was told that the tumour was rapidly growing and had the consistency of jelly, which put me in a very dangerous position. As my surgeon so delicately put it, if you can imagine your spine like a carrot… If something were to cause a sever enough jolt, like you have a fall or get into a car accident, your spine could quite easily snap in two as there’s nothing holding it together in the middle.”. Little did he know that I had a history of being the worlds shittest driver so this was all too real for me! (Cue jaw drop and audible blinking). Cheers for that super cute visual doc! Much love. Fortunately for me, I grew up with a father who was on the Asperger’s spectrum, meaning I wasn’t overly disgruntled by my surgeons’ surprising bedside manner and in fact, it reassured me somewhat. Surely someone with such awful people skills must be a genius…right? Well, he couldn’t in all good conscience have someone walking around with a carrot for a spine, so as soon as I got the news the tumour existed, I was scheduled in for surgery the very next day. That’s when I knew it was bad. They (my team of doctors who suddenly existed), wanted to rush me into a 9-hour surgery in less than 12-hours time, with one of the best spinal surgeons in the country. I was like the Beyoncé of cancer. Bow down bitches!

Very cool pic

That evening my father received a call from yet anther member of my entourage… I mean medical team.  They were worried about the surgery. No shit?! Apparently, because of the soft, jelly-like consistency of my tumour (I know, super ew), it was more than likely that no matter how well the surgery was performed that even a single cell left behind would result it the recurrence of the cancer and if/when that happened any subsequent surgery would be impossible due to the sever amount of metal and scar tissue my back would now contain. This was when I was told that if I did not have the tumour removed it would continue to grow, put pressure on my spinal cord and eventually paralyse me. However, in a fun turn of events, the surgery itself could also result in paralysis. FML.

perception phenomenon completion – we reconstruct the hidden | the attention of the unusalThey decided not to chop me open in a flurry the next morning and instead we had a chat to yet another super-important-doctor-man. This led to my inclusion in an 18-month clinical trial at the Peter Mac Cancer Clinic. The idea being that the trial drug would calcify my tumour making it hard and therefore simpler to remove. Easier to remove means less chance of cells left behind and a decrease in my chance of recurrence. These appointments were long, boring and both emotionally and physically painful. Going to a cancer clinic is, in a word, urrrghhh*hgh$s@g#*^k! There is nowhere in my life I have felt less like a person and more like a patient. Not even an important patient. You’re seen as a dying patient that has been given up on. I wasn’t even dying man! I was 21, with a bone tumour that could paralyse, but not kill me… therefore I was one of the lucky ones. Yeah, this place was grim.

 Cancer patients can be real ball breakers. We can be really fucking demanding and why shouldn’t we be? We are all in pain, many of us dying or fighting not too and not to mention, we’re bloody terrified. Yet, in these settings we are so often overlooked or ignored by people who are overworked and underpaid. I get it. It must be necessary to detach to some degree if you are seeing the walking dead on the daily, and we are not generally coming into the clinic a ball of laughs! We are exhausted to the bone and tired of being poked and prodded within an inch of our lives, forced to give blood from veins that have been bled dry and arms that are painfully bruised. On top of that, there is an expectation of gratitude for the care we are receiving. Don’t get me wrong, I was treated by some wonderful practitioners and nurses, but a kind grin is limited in how much it can help when the majority of your sterile surroundings make you feel like a numbered petri dish in a science experiment. Which is essentially what I was as part of the trial.

I didn’t have traditional chemotherapy. Again, I was “lucky” because the chemo I was given wasn’t given intravenously. It was an extra special mix made just for me that they didn’t make until I’d arrived at the clinic. Sounds exciting but this just meant I was usually waiting at least 4-hours to be aggressively stabbed in the belly with a syringe and sent on my way. It was simple. It was sad. I was told there were no side effects. Hazzah! I later found out that this didn’t mean that there were technically no side effects, it actually meant that because it was a clinical trial, that the side effects were yet unknown. It would be several years before I stopped receiving letters about newly discovered issues caused by the drug. Here’s a cute example; they found if you received dental work while the drug remained in your system that your jaw bone was likely to rot away. Yum. Or how about when they told me that if I was to get pregnant during the trial that my baby would develop without bones. That’s right, just a ball of flesh and organs. True story.

Pensar colorido cartel de cerebro arte anatómico cerebro

During the 18-months I was on the drug trial I attended a kind of cult-like cancer healing retreat. Yeah, it was as fun as it sounds… Just me, a raw-vegan-sugar/gluten/caffine/happiness-free diet and 50 other desperate and dying cancer patients clinging onto a speck of hope. This was one of the strangest experiences of my life and naturally extremely confrontational (I now know what I would do if I had 3-months to live, so that’s…yeah). But in the midst of all the tragic stories, group fear, hours of meditation to reflect on said fear and depressingly tasteless food… I met Schmoomy.

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The Schmoo was the most hilarious, incredibly insane, magnetic and vivacious girl I’ve ever had the honour of getting to know. We were the two youngest people attending Cult Cancer by at least 20-years and as such, we clung to each other for dear life. We ended up spending practically every day together for the next several years. She was the Kim to my Kanye, the Thelma to my Louise, The Schmoomy to my Schmoo-monkey! We were inseparable. She may have had an aggressive brain tumour that made her hallucinate small children and my spine was eating itself from the inside out, but together we laughed so hard our bellies hurt, smoked so much weed Snoop Dog (Lion?) would be jealous and generally just took on the mother fucking world!

Illustration-ilustraciónI loved her like a sister from the second I met her but I knew I was on borrowed time. Everyone around her was living on hope but I’d seen this play out with my boyfriends’ mum. I knew how this story ended and it scared the shit out of me. But that little fucker was just so damn lovable that I decided whatever time I got to spend with her was a bloody gift that I wasn’t about to waste, and I’m so grateful I did, because without an ounce of exaggeration, she taught me how to love myself and changed my life forever. There are not enough words in the human language to adequately describe how important this girl was, and still is, to me. But I will do my very best to honour her memory in the next instalment.

To be continued…

 

In loving memory of Shmoomy & R.S.