“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.

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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