Wellness


“There’s lots of people in this world who spend so much time watching their health that they haven’t
the time to enjoy it.”~Josh Billings

gina

Today I read an excerpt from Gina Liano, who features in the Real Housewives of Melbourne. Whilst I typically wouldn’t grant much merit to a woman featuring in such a show, Gina is a successful and established Barrister, is financially independent, a mother of four, and has recovered from Cancer. In an interview promoting her autobiography ‘Fearless’ to the Herald Sun, she was quoted as saying;

“Despite having everything, it didn’t matter because I didn’t have my health,” Liano said. “If you don’t have your health, you don’t have anything. The true measure of success is being healthy and alive.” (www.heraldsun.com.au).

If I were to live by the words of Gina, I would be to living a life of little significance, defined by all that I do not have. I do not have my health. I was born with a chronic, incurable, and life threatening genetic disorder. As I read the piece I remember saying to my Mum “What a load of shit that is. Am I not successful? Do I truly have nothing?”. Of course, it would be easy to blame Gina. But she is merely echoing the sentiments of a society which is placing an increased and fervent importance on health and wellness. And if you don’t make the cut?

cone of shameThen you end up stuck with me in the cone of shame.

The Wellness Industry is a relatively new one, and one which is incredibly pervasive. Once upon a time, the concept of wellness was absent entirely. The biomedical model, society, even alternative health practices focused on disease. You either had it, or you didn’t. There were no shades of grey splayed upon the counter. You sought help when you awoke to discover that your bones ached. Outside of this, you did not see a doctor, a chiropractor or a psychologist.

You just did life.

Now, as a society, we are not content to just do life. This is not a bad thing. Finally we are appreciating the value in grey, in all it’s infinite shades. You may not have a disease, but your body may be slow, your bones tired. We are encouraged to take supplements and vitamins, practice tai chi, see a psychologist to achieve our full potential and meditate. But at some point, we lost the way between practicing wellness, and being defined by the mere fact of whether we had it or not.

wellness(www.refinery29.com)

“Wellness; The quality or state of being healthy in body and mind, especially as the result of deliberate effort” (dictionary.com) These days, to be a wellness expert, all you need is an iPhone, Instagram, a wordpress account and to write with positive language, accompanied by a perfectly lighted photograph of a smoothie in a mason jar. One can no longer just be a blogger. You must be a wellness coach, a life style coach, a wellness warrior, fitspo or a raw vegan.

I am a blogger, I am a writer. It is what I do. Naturally, I follow other bloggers on Instagram. It is one of the easiest and most engaging way to discover new writers. But it can also be one of the most successful ways in helping me to realise that I, and many other young women living with Chronic Illness, just don’t measure up.

On my Facebook before writing this piece, I asked my female friend’s with Chronic Illness about where they seek information about their health. One friend wrote “…I try to stay clear of Pinterest and Instagram because of condition related self esteem issues”. Finally someone was giving words to all that I could not, or would not say.

Here is the truth of the matter; Most of the time, when you have a Chronic Illness, wellness posts tend to make us feel like shit. Before you slap my hands away from my words, and spit that I do not understand, grant me the gift of viewing the world in a moment as me.

Instagram. There is a perfectly photographed juice consisting of kale, spinach, berries. The caption boasts that it will detox your liver. That it’s the only way to start the day. And then you sit and begin your day with a feed bag pumped through a feeding tube, or a Fortisip choked down, full of calories that the juice proudly remarks that it does not have.

Pinterest. There is the perfectly toned, bronzed belly of a blonde with bleached teeth, a hint of Nike poking from underneath. For, a run is the only way to start the day. Meanwhile, you race to the bathroom and vomit and shit yourself at the same time.

Blog. Drugs are bad for you. Vaccinations are bad for you. Chemo is bad for you. You can recover, and live with wellness, by juicing, detoxing, meditating. There are salt houses, herbs, chakra cleansing and supplements. And with every drug you swallow, every drop of poison that is pumped into your veins, every gasp of oxygen you need, you know that you failed.

jess ainscoughJess Ainscough

I will be judged harshly for this piece, this much I know. Many wellness bloggers and writers claim to be helping people just like me. That they are passionate about health, wellbeing, improving people’s lives. This much I do not doubt. But many also claim to have the ability to cure me, to rewrite my genome, and kiss my Fibrillin better. Belle Gibson, creator of the Whole Pantry, claimed to cure herself of Brain Cancer by eating whole foods. It now appears that her Cancer never was. Jess Ainscough, creator of ‘Wellness Warrior’, just died of Cancer, aged just 30. She had been using the highly controversial ‘Gerson Therapy’ to treat her Cancer.  Her partner Tallon Parmenter recently said;

“In true wellness warrior style, we integrated our natural healing regime with the recommended radiation.
“Finally the walls were broken down between conventional and unconventional medicine — I don’t know why as a society we must choose one or the other.
“This was something Jess was looking forward with sharing (with her followers). It was an exciting evolution from her earlier days of feeling that she had to be part of one extreme world or the other.” (www.news.com.au).

Jess was not the first to die from the consequences of alternative treatments, and she will sadly not be the last. And like so many others, she deserved better.

Screen Shot 2015-04-07 at 11.45.32 pm

I hate this disease. It is exactly that; A lack of ease. The past week I have ended up in the resuscitation bay in Emergency, and had morphine pumped into me by the minute, rather than the hour. I have had a severe allergic reaction to the ECG pads that I was connected to, resulting in lips to rival Angelina Jolie, and my torso scarred, bleeding and weeping. I have spent the past two days vomiting until even water was a recognised threat, my swollen belly beguiling my infertility. The pain in my rotting joints wakes me by the hour, and I cannot tell night from day. And so it goes.

I am not opposed to wellness. I meditate for an hour every single day. I take four supplements a day, approved by my medical team and pharmacists. I use TENS machines to manage my pain, and go to the Osteopath on a fortnightly basis so that the pain does not steal me away entirely. I practice pilates. Sometimes it helps me to dislocate less. Sometimes it helps me to dislocate more. But I continue it all the same.

But quality of state, quality of body, is a quality that I will never attain. All the deliberate effort, all the intention in my flesh, could not undo the April Fool’s of my DNA. I could listen to some of the Wellness bloggers. I could stop taking medications. I could breathe away the disease. I could forego all traditional treatment. And in doing so, I could measure myself for an oak coffin, having signed my death warrant.

Ultimately, the Wellness Industry for me is not about wellness at all. For me, it is a place of blame. If only I tried harder. If only I juiced more. If only.

I live with if only’s every single day. I would not wish this disease upon the bones of any other, least of all myself. If I could free myself of this, I would. Ironically, following the guidance of Wellness bloggers truly would free me of this disease. Just not in the way that I want.

I will continue to meditate everyday. I will continue to visit the Osteopath, to practice Pilates, to eat a low FODMAP diet, to take supplements and to use essential oils. I will also continue to coat my tongue in the powders of the drugs which were designed to keep me alive, I will continue to allow the doctors to pump my veins filled with all that will prolong my life, and I will continue to allow my flesh to be cut apart by countless scans and radiation.

Screen Shot 2015-04-07 at 11.48.28 pm

I have deliberate effort. But that is not enough. I will never be the bronzed, toned beauty sipping from a Mason jar while running along the beach. Tonight I sit in front of the fireplace with my Golden Retriever, talking to a friend. A few hours ago I broke up with my boyfriend. I have vomited all day, and soon I will attempt to stomach enough water to swallow more powdered capsules. I will listen to music and finally my body will allow me to rest, at least for an hour or so.

I don’t have my health. According to many, this would ensure that I don’t have anything. I may not have ‘anything’. But I have enough. And I think that is more than most people can say.

Why I am not proud to have a Disability


marfan meme

 

Last week I saw my professor for my annual ‘General Marfan check up’. This is an awkward way of saying that he is making sure my organs are still holding themselves together and that my aorta isn’t about to tear itself in two, unwanted paper disposed and forgotten . Talk turned to the latest research in Marfan Syndrome and he offered his belief, almost by way of apology, that one day, they might find a cure for people like me. It just wasn’t going to be today.

I threw my hands up exasperated. “People with illness and disability are always saying ‘oh I wouldn’t change a thing’. And that’s great, like good on them. But if you find me a cure tomorrow, I’m taking it”.

He smiled, without missing a beat. “That’s because, the truth of the matter is, you don’t actually enjoy your illness at all”.

It had taken 9 years of being severely symptomatic with my syndrome (Who knew that disease could alliterate so well?), but finally, someone got it.

Another two moons after this appointment, I read an article by Gavin Fernando on news.com.au (Don’t judge me. I’m already judging myself for my cheap news fixes). It was entitled ‘I’m not proud to be gay’. Before you allow yourself to become enraged, as I first did, first understand what it is he is really saying. Gavin dared to explore a concept that few others do, at risk of appearing homophobic or self loathing. Gavin is not in a cult, and he is not somehow trying to deny his sexuality, or even claim that it is something he is ashamed of. He just doesn’t believe in taking pride in something that is completely biological, something that was never a creation of his own hard work. Gavin wrote;

“Why should I feel ‘proud’ to be gay? The concept is as ludicrous as feeling ashamed to be gay. We’re proud of our achievements and goals; we don’t congratulate ourselves over things we didn’t control. I’m not proud to have black hair or relentlessly ethnic eyebrows. I just do.”You can find the link to Gavin’s full article here http://www.news.com.au/lifestyle/real-life/mardi-gras-2015-im-not-proud-to-be-gay/story-fnq2o7dd-1227252721752

It was with these words that I realised I am not actually proud to have a disability.

10478536_10152663511184310_1845061410687356302_n

There we go, I said it. You can pick your jaw up off the floor. I have a golden retriever, the floor is covered in fur, so trust me when I say that you don’t want to let it hang about down there for too long.

In the disability community, to express the belief that you are not proud to have a disability is akin to selling your first born daughter on Ebay because it’s somehow less desirable than birthing a son. It’s just not the done thing. The disability community is one that I enjoy being a part of. I have many friend’s who, like myself, are very outspoken within the community. We demand equality, accessibility, recognition and the right to the same opportunities as our able bodied counterparts.

But this is different to taking pride in something that I actually never had a say in. Marfan Syndrome is the result of either inheriting the disorder from a parent, or a spontaneous gene mutation. The spontaneous gene mutation always makes me think of a really opportunistic genome shouting ‘YOLO bitches’. But I digress.

For me, to take pride in having a disability is opportunistic at best, and downright grandiose at worst. I had no say in the matter. When my parents were horny twenty year olds and conceiving me (This is a story they take great pride in sharing whenever I have friend’s over), they did not, mid coitus, give a shout down to their genitals and say “Okay Jess, and future favourite child. So how are you going to go about developing the skills to successfully acquire a disability? What is your game plan?”.

weakest link goodbye

Similiarly, when I was thirteen years old, I didn’t start studying or working out everyday so that I could develop the severity of the condition that I did. There was no hard work or perseverance or skill applied to the development of my condition at all. I was just the weaker link in the biological chain, plain and simple. To take pride in the mere fact that you have a disability somehow suggests that you are in some way stronger, more resillient, more intelligent, ambitious or somehow a better person, simply because of the fact you have a disability. I am a firm believer in equality, and disability is not exempt from this. Just like everyone else, those of us with disability can be fantastic and motivated, talented people. We can also be cheats, liars and outright scumbags.

Of course, to say that you are not proud to have a disability, it is believed that what you are actually saying is that you are ashamed to have a disability. This could not be further than the truth. Just as I will not take pride in something that I had no say in, and showed no skill or achievement towards, I will not feel shame for something that was merely a product of inheriting faulty fibrillin from my parents. I am in no way defective, or somehow a lesser person because I have a disability. My body just doesn’t work like other people’s, that’s all.

 

world problems

 

But whilst I am not proud of the mere fact that I have a disability, I am infinitely proud in the way that I live my life with disability. My life is a difficult one, and there is no denying it. I live with chronic pain, chronic exhaustion, infection, weakness, nausea and vomiting every single day. And that can be a good day. It would be so much easier to curl up in a ball and say ‘You know what? Fuck this. I’m just going to lay in bed and use Tumblr for the rest of my life. Cause this is too damn hard’. And sometimes I wish that I did make that choice. Other people with illness and disability make this choice, (as do able bodied people). But that’s not me.

I am highly successful in my chosen path of psychology, I run a not for profit, I blog and freelance write. In 42 minutes I will have a job interview. I have the mother of all infections courtesy of my bodies ability to fight off more than a wayward fart from my brother, and I can’t stop shaking from fevers. But I really want this position, so I’ll do it. Admittedly, my voice sounds as though my balls have dropped. But you win some, you lose some.

i see pride

I am proud of the fact that where others shy away from their differences, I accentuate my impossibly long limbs, I utilise my experiences, and I manipulate my physical weakness to become an intellectual strength. I am proud of the fact that I can take downright shitful circumstances, and make it work for me. I am proud to belong to a community of people living with disability who share the same attitudes and values, and that together, we are speaking out to make this world a better place for people with disability.

I just won’t take pride in the fact that I have a faulty genome.

Because there is a lot more to me than that. And that’s the stuff that I am truly proud of.

Red lights


This blog piece was influenced by ‘Red light’ by Baby Queens. They have a beautiful harmony, I encourage you to listen as you read. Chronic Illness can leave many feeling as though you are stuck in the slow lane in life. I know that I am not alone with feeling these sentiments.

With love and light x

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‘An optimist is a person who sees a green light everywhere. While a pessimist sees only the red stoplight. The truly wise person is colour blind’.
-Albert Schweitzer

driving no

Red.

Intersections aren’t my kind of thing. If you were to ask anyone who has ever had the misfortune of being in the car with me, they would say that driving in general is actually not my thing. One day I was driving my younger brother to school and I asked ‘Am I good to go?’ as I waited for him to give me the all clear from his side to pull out of a carpark.

Fun fact; ‘No’ sounds a lot like ‘Go’.

I used to only see green, to the point where with hindsight, I am able to recognise that it was to my detriment. Of course, had you told me this at the time I would have snapped at you that I would show you wrong. Doctors, family, my lecturers. I was going to be a nurse, and over my dead body would I do anything else.

It took two years, until my clinical placement teacher sat me down and told me that if I continued, it truly would be over my dead body. In the space of an hour I transitioned from indignation to anger, to being downright offended. Finally my face cracked in two and I sobbed into the folds of her shirt as I realised she had made the decision for me that I could not make for myself.

I was too sick to be a nurse. And I had no idea how to be anything else.

Right now, while I purchase second year psychological science textbooks, my friend’s who I initially began Uni with are purchasing their uniforms for the designated hospitals where they will be beginning their grad year. As they begin their careers, as they cannulate, intubate and consummate their knowledge, I will be walking late into class and listening to students raise their hands as they asked ‘So like, referencing is like, compulsory yeah?’.

I am angry. I am angry that my parents decided to fuck one night twenty three years ago. I am angry that my DNA fucked me over. I am angry that most nights, I am too sick to fuck at all.

But anger is like a red light; It kinda stops you from going anywhere.

Orange.

reading hospital

Go to class. Spit up in the sink on the way. Avert your eyes, pretend that the other girls didn’t see. Pretend that you can’t taste the thick of your lungs upon your tongue. Apologise to your tutor for being late once more, and mumble something about there being too many fucking stairs. Pretend that you can’t feel the heat of the stares as they catch sight of the bruises along your inner arm. Tell them that drugs are a poor choice, and take your seat when they mistake joke for truth.

Watch as they raise their own perfectly unblemished arms and make intelligent comments about attachment theories and Bowlby’s monkeys. Submit yet another request for extension on an assignment and feel the shame creep across your collarbones. Look into the eyes of your lecturers and speak too quickly and too much about how you aren’t stupid, it’s just hospital and vomit and codeine and you’re talking too much and now it’s awkward and oh fuck. Feel as they touch your arm and tell you it’s okay, to look after yourself.

And the truth of the matter is that it’s expected that you know how to look after yourself when even your DNA doesn’t know.

When the stars hang limply in the sky, your friend’s ask you to go clubbing and you mumble excuses about having other plans. It’s less shameful than admitting you will spend the next ten minutes sitting in your car working out how to drive home, let alone rub your breasts against the flesh of another thick by cigarette smoke. Finally you make it home and your Mum spoons chicken and tablets into your mouth, sometimes metaphorically, sometimes literally. A bucket and laptop will rest swaddled in your lap, and you will frantically reference and spit out another sentence.

And you continue to wait.

green eyes

Green.

My eyes are green. Google will tell you that it is the rarest eye colour on the planet. My family will tell you that they change colour in the sunlight. Lovers will tell you that they change colour when I cry. But regardless of how you look at it, they are a spectrum of green. Green is my homebase, my grounding breath.

When all is said and done, green works for me.

I am in my fourth year of Uni, and only my second year of Psych. My HECS debt will be greater than my burden of disease, and when a graduation cap sits upon my skull, my friend’s will already have established their careers. This isn’t what I ever asked for, it isn’t what I signed up for. I thought I was meant to be doing greater things than this. But when you have a Chronic Illness, your flesh has other ideas in mind. You are forced to be colour blind, and time has a sense of it’s own. Someone recently said to me ‘You know, I have always wanted to be a clock. I am always running late for something. But imagine if I was time?’. If I had a choice, I wouldn’t be a clock. I wouldn’t be in a rush, and I wouldn’t be time. I just wouldn’t be sick, that’s all.

Three mornings ago I dragged myself to four hours of class at 8.30 in the morning despite being up sick all night while my Golden retriever moaned in protest at my own moans and retches. I cradled a tea in my palms in a lecture theatre, limbs folded unto themselves. Did you know that women are most likely to be murdered when pregnant or shortly after giving birth? And did you know that psychologists are now beginning to recognise a new stage of development, ‘Emerging Adulthood’? And did you know that there was a guy in my class who got his head stuck in a cake tin until he was freed with tin snips?

I know this now. I know this because I am eager and wanton, begging for more. More books, more essays, more words plaited around my skull. Answer my questions with more questions. After four hours I drove home and fell into my parents bed, too exhausted to walk to my own. Later I drove to hospital and sat in the office of my professor. I listened to him tell me that he wished he could cure me, and that one day maybe a cure will be found. He smiled as he listened to my heart, and I shed a tear as I learnt in the waiting room that another woman living with Marfan’s had died just as I continued to live.

And then I studied some more. Finally, after four years, or perhaps twenty three, depending on how you look at it; I have come home. I am where I am meant to be.

Maybe I need to be colour blind. Maybe it would hurt a little less at every red and orange light, and every slammed brake at intersections (My brother would be inclined to agree).  Perhaps it would make my bones wiser if they were merely ossification and not technicolour.

But truth be known, I really like green. 

It’s a good colour on me.

Undiscovered


The lyrics that have inspired this piece are from ‘Undiscovered’ by Laura Welsh, which features in the 50 shades of grey soundtrack. This is an exploration of sexuality and intimacy within Chronic Illness, providing a different insight into one facet of it.

With love and light xx

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‘I am interested in the gap between what people say and what people think- The undiscovered world’s of peoples lives’

-Richard Eyre

glitter tongue

I am but parted lips, nothing but a nibble between each. One is my thoughts and one is my words. If you know me at all, you would know that what I really mean is one is my truths, and one is my lies. And the bite between? That is the difference between your world, and mine.

You tell me that you want the truth. That you really do want to know; all of it. You always do. The vomit and the fucking and the maybe-I’ll-be-better-tomorrow’s. You claim that you are different, that you aren’t like the others. My lips are tempted to scowl, show you to the door and thank you for trying all the same.

Instead I vomit into your lap and let you show yourself the door.

So here it is. One is my truth, and one is my lie.

I can’t be someone that I’m not. To make it up to you.

You had wanted the truth, of course you had. And I had handed it to you, littering ‘Slippery when wet’ signs around my ankles. Ergo, get out while you still can. But it was an easy truth to swallow when I was perched in front of you, all short shorts and wild laughter. I was sick, that much you understood. But I wasn’t sick yet, not really. It’s always easier to play pretend when my blood isn’t seeping down the drains of your house.

ankles

I learnt to barter a long time ago, fluent in trading the fucked up variety. When I have to cancel dinner for the third time that week, I will slide the lace around my ankles and I’ll kiss Thursday better in all the ways that your mates could only dream. When sick and blood are the only words I speak between sunrise and sunset, I will take your fingertip between my teeth and make you forget. And in the evenings that I am too broken to peel off my own bra, I will drag you into the steam with me and try and make us both remember the kind of health that I never really had.

You’re the only one that I’ve got, but I can’t get lost with you.

I want to get lost with you. And I need you to believe that, just as I try to believe you when you tell me that you will teach me how; that you are here to stay. Oh how sweet it would be to believe that somehow I am enough, and not too much, all in the same suckled tryst. You will take the neon signs around my ankles and place them above our heads. And then you would kiss me, together owning my disease and it’s warnings equally beneath our plastic holly.

sexit up

I don’t know how to get lost, or at the very least I do not remember. It’s easier to be seated on the edge of my predictions, heckles raised and waiting, than it is for you to slice me in two, telling me that you never signed up for this kind of life by way of explanation. I hand myself to you, full and open, only to curse myself and flush with regret, a cocktease of the emotional translation. I am the personification of two steps forward, one step hurtling off the concrete pillars, and I’ve got no idea how to be anything else.

When all I want to do is get next to you.

So these are my truths and my lies. Perhaps they are a pair of truths. Perhaps they are a duet of lies. Or maybe it’s a parted lip; 50/50. Here’s my real truth; I will never tell you which is which, and it’s up to you to decide which you will kiss.

I just hope that you do.

Coffee is a religion, and other ICU musings


For the past 18 months, my Mum, best friend and confidante has been Critically Ill. In the past year along she has been intubated on a ventilator two separate times, and had over 10 admissions to ICU. I have written about 30 things I have thought at times while my Mum has been critically unwell, and it provides a snapshot into our lives.

With love and light,

Jess xxx

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coffee iv

1) Bad things happen to good people, every single day. Bad things just don’t happen to other good people either. It doesn’t matter how many old people you have helped to cross the road, or how many charities you have donate to in the past financial year, or how many times you have tried not to take things for granted, bad things still happen.

2) Life is unfair. Throughout my life when I have cried onto my Mum’s shoulder that life isn’t fair, she has told me that life was never meant to be fair. But this didn’t stop me sobbing into Dad’s shoulder about life being unfair, as a ventilator gurgled down Mum’s trachea in the Intensive Care Unit. This time, Mum was not there to tell me that life wasn’t meant to be fair.

3) Coffee is now a religion. I am intensely, excessively grateful for a hot coffee. I wasn’t sure how my life had reached a point where I was ready to begin worshipping an instant coffee made in an ICU waiting room kitchenette, and drunk from a styrofoam cup. But the world works in mysterious ways.

jim jefferies

4) In the words of comedian Jim Jefferies, some things are the least mysterious things on the planet. This applies to Critical Illness. There is nothing mysterious about Mum being kept alive by a Ventilator, and with more tubes snaking out of her flesh than the London Underground.

5) God is a fucking arsehole. Or Buddha. Or Allah. Or the Universe. He isn’t mysterious. Right now, he is a fucking prick.

6) I take that back. I didn’t mean it. I’m sorry God/Buddah/Allah/Universe/Instant Coffee that I am worshipping. Don’t let my Mum die. I will become a born again Virgin, and I won’t even look at a penis until I am married.

dr love

7) That ICU doctor is really hot. I wonder what his penis looks like. Do you think ICU doctors have nicer penises? They dedicate their lives to saving lives, surely the Universe would pay one forward to them and give them a penis bigger than a roll of Christmas wrapping paper.

8) Stop thinking about penises. Your Mum is on a ventilator. Think of something else.

9) What if Mum dies? Will Dad re marry? I bet he would marry some really weird woman that does taxidermy for a hobby or something.

taxidermy

10) Don’t die Mum. I can’t handle having a stuffed Labrador in the loungeroom.

11) I think the man next to Mum just died. There is so much blood. His family is screaming. Should I hug them? What do I say? I’m sorry? I’m sorry that your Husband and Dad just drowned to death in his own blood? I am sorry that a 22 year old stranger just sat here and listened to his final gurgles through the curtains?

12) Why do they even bother with the curtains, like really. You can hear and smell everything anyway. They may as well hang a banner across the middle which reads ‘I See You’.

punny

13) Now isn’t the time to be punny.

14) I don’t know why Dad keeps telling me I need to go home and eat and sleep. Food isn’t going to change anything for Mum is it? It’s not going to save her life. I can’t just go home and inhale a burger when Mum has a feeding tube curling into her nostril.

15) Now my brother’s want to know if you can put a burger through a feeding tube. It’s a fair enough question really.

food pyramid

16) I need to cook dinner for them. Things are dire when the boys start begging for vegetables. No, no more KFC tonight.

17) I can’t remember how to cook Tuna Mornae. I’ll ask Mum.

18) I can’t ask Mum. I think I’m going to vomit.

makeup

19) Of course you can’t vomit Jess. You haven’t eaten anything for 12 hours. Maybe this is why Dad says that I have to eat. That way, when I vomit from sobbing myself in half in the bottom of the shower, I don’t vomit just bile into the plug hole.

20) I I keep getting mistaken for a Doctor in ICU. Dad says that I don’t need to wear heels and impeccable makeup to ICU, but I do. Because otherwise I will look like the other families in there, all black eyes and haven’t changed for three days and sobbing in the hallways. I can’t become like them.

21) Mum stops breathing for herself completely. I sob in the hallway. My makeup is ruined.

cafeteria

22) Dad and I take a break. He spends more time in the waiting room than next to Mum’s bed. He is drowning, and I don’t know how to save him. I stroke Mum’s face, careful not to nudge the ventilator. ‘It’s okay Mum, Dad and I are just getting some dinner in the cafeteria. I will be back in 15 minutes okay? Promise’. Mum does not reply. The ventilator continues to click.

23) I force some cafeteria rice into the back of my throat, and wash it down with a lemon gatorade. My blood pressure is so low, I shouldn’t be able to stand. Dad and I head back to Mum.

24) We have been here five minutes. Dad finds some reason to go and shift the car. I don’t remind him that we have a pass from ICU, making us exempt from parking fines. I hold Mum’s hand. Sometimes the Propofol wears off, and she starts to wake up. She panics, and I have never seen anyone so terrified. I beg them to put Mum back to sleep, and with the press of a button, Mum is sedated once more.

prop

25) My brother cries. The head of ICU walks in, and tells us a story of how an ICU doctor in America was caught at home watching a porno and pumping himself full of Propofol. We double over laughing. Mum doesn’t. The ventilator clicks.

26) I smile at Dad, and tell him I will just go and use the toilets in the waiting room. I walk slowly, smiling at the staff. I slam the toilet door shut and vomit.

27) I rinse my mouth out in the basin, and walk back to Mum. ‘It’s me, Mum. It’s Jess. I’m back now’.

hospital

28) Mum doesn’t answer. The ventilator clicks.

29) Dad says that it’s time to say goodnight. We need to let Mum get her sleep. I plead for a few more minutes. I am sobbing, hysterical. The staff agree that once the big hand reaches the 9 on the clock, I have to go home. I have fifteen minutes. I say an infinite good nights to Mum, and tell her that I will see her in the morning. I tell her I love her, just in case I don’t.

30) I go home to bed. And I will start all over again tomorrow.

Sorry


I rarely blog about public incidents. But what transpired yesterday and in the early hours of today in Sydney is not a public event. It is an intensely personal reality. We each have the right to go to work, to buy a coffee, to stand in line, to have our minds elsewhere in a coffee shop. We all have the right to do so safely, and to return home once more.

These are merely my reflections. This is not well written, but is from a place of sadness and pain. I ask that in the following hours, days, weeks and months, you respond to yesterday’s events with compassion, loving kindness, intelligence and empathy.

Hate does not cure hate.

……………………………………………………………………………


cafe

I am sorry.

I am sorry that you went to buy coffee, thoughts in another time, another place. I am sorry for what came next.

I am sorry that you tied your apron around your waist, hands rested on the counter. I am sorry that these hands were then forced, splayed across the window pane, leaving grubby, exposed prints for the world to see.

I am sorry that while you fought for your life, that we filmed your every move. I am sorry that while a gun was pointed towards your flesh, so too were the world’s camera’s, greedy and clambering with sticky fingers, hungry for the breaking scoop, the clearest image of your pained cheeks, filling themselves with your pain.

peace

I am sorry that we watched. I am sorry that we each sat transfixed to our screens, television, iPhone and laptops alike. I am sorry that the more the media gave to us, the more we demanded more, slapping forks upon plates. Feed us, give us more.

I am sorry that we all had an opinion. I am sorry that while you quivered, stood resolute, wet yourself or bargained, we all busily threw our thoughts into the ether. It’s Terrorism. It’s the act of an individual. We need to just storm in there and get him. Why don’t the hostages just overpower him? It’s not that hard.

I am sorry for the hours that never ended. I am sorry that we sat in our homes and remarked ‘Jesus, it’s been hours’. I am sorry that while we ate dinner, walked the dog, made love, read a book, vacuumed, you were still there. I am sorry that you did not have your dinner, and your dog, and your books, and your vacuum cleaner, and your lover. I am sorry that you had to wait.

police

I am sorry that this is what your job asks of you. I am sorry that you stood in blue, black and overalls. I am sorry that you train for these situations continually, but that now you had to live it. I am sorry that you stood, guns and radios and stethoscopes waiting.

I am sorry that you knew the longer you had to stand there and wait, the longer people had to suffer. I am sorry that there was nothing you could do, for so, so many hours.

I am sorry that this was yours. I am sorry that it was your husband, your wife, your girlfriend, your boyfriend, your Mum, your Dad, your grandparent, your son, your daughter, your grandchild, your niece, your nephew, your aunty, your uncle, your lover, your ex, your friend, your colleague, your neighbour. I am sorry that it was your person inside. And I am sorry that you had to be outside.

ride with you

I am sorry that your community, your belief system, your religion was vilified. I am sorry for the ignorance, for the claims that you were to blame as you went about your lives. I am sorry that there had to be a hashtag in order to keep you safe from the actions of a man you had never met. I am sorry for the threats, for the fear, for the fact you felt the need to remove your Hijab, Niqam, Burka or Dupatta.

I am sorry that you did this. I am sorry that your heart could not see loving kindness, sense or compassion. I am sorry that you chose cruelty over compassion, suffering over sense, killing over kindness. I am sorry that you chose to end and destroy lives, and that now, that cannot be undone.

wood heart

I am sorry that you had to survive. I am sorry that for the remainder of your life, you will know that your heart beats and contracts, and that the hearts of two others do not. I am sorry that you will jump at loud noises, fall to the ground at shouts, vomit during the evening’s news. I am sorry that you ever had to survive this in the first place. But I am so very glad that you lived.

I am sorry that you had to die. I am sorry that you went to buy a coffee, or to make one. And I am sorry that you will never come home. I am sorry that your flesh is now the responsibility of the pathologist and coroner, and I am sorry that your family must identify you, love you, farewell you and bury you. I am sorry that you will miss out on the rest of your life.

map watercolour

Most of all I am sorry that this is what we have come to. I am sorry that we are the best and worst of humanity, and that we are forever getting the balance wrong.

Knowing


unkown 1 You wake up. You place any joints back in their appropriate sockets and hope that you can be lucky first time around. You reach for the clock and see that you have slept for twelve hours. You do not believe that you have slept at all. You claw for the side of the bed to prop yourself up, and retch at the pain which fits through your flesh. Slowly you will walk to the bathroom and cup your chest and spit canary mucous into the basin. There is coffee and breakfast and medications swallowed in equal thirds, and you hope that you can make it through the day without needing to vomit.

unknown 2 You will sit on your shower chair, and you may have to ask for someone to turn on the taps. You will understand that showers are better than sex; showers mean no pain. After 7 minutes your Dad starts banging on the bathroom door about water restrictions and jesus bloody christ don’t you know we’re in a drought? If it is a good day, you will be going to Uni. If it is an okay day, you will be going to specialists or treatment. If it is a bad day, this line is a lie, because you never made it to the shower in the first place.

unknown 3

You will wrestle with the ignition in your car, and you will call for your Dad to turn the key for you. You will drive forty minutes to Uni, and you will take three rests walking from the accessible car park to your class. You will be late, and you will be gasping for breath as your blood regurgitates backwards into the valves of your heart. You will laugh and you will speak and people will comment that you are always so excited. You will not tell them that this is the first time you have ‘socialised’ in days. Your lecturers will always ask you stay back after class. How are you doing? You want to tell them ‘same shit, different date’. You smile and say good thanks and you take another three rests walking back to your car.

unknown 4

You make it home and it takes you two minutes to get out of the car. Sometimes your family will ask how your day was. Sometimes they will not. After all, you were only gone for three hours. Time is relative in disease. You will stumble to the shower, and your Mum will help to peel your bras and shirts off. Your arms are too tired by now. You like to think that one day a husband will do this and he will smile and say ‘nice tits’. You like to think it will be twice daily joke. You will curl up on the shower floor, the chair dejected in the bathtub. You curl up in the foetal position and for 8 minutes you think of nothing but the droplets tracing down your red-hot flesh. Your Dad will bang on the door and he will ask if you know about the drought? You will sit on the bathroom floor naked a while until you can get dressed. 

You didn’t cook dinner and the familiar guilt pangs in your belly. You thank your Mum, and she says ‘that’s okay’. Sometimes you are well enough at this time to help with the dishes. Sometimes you are not. Your eyes continue to dart to the clock. You wait for the moment drug powders can coat your tongue and you can get some relief. The TV is too loud, the lights are too bright. ‘Stop talking so fucking loudly!’ you snap. Your family is no longer bewildered by this. ‘You’re in pain. You need to go to bed’.

unknown 5

You take one Golden Retriever and three icepack and one heat pack and one water bottle and two emergency tablets to bed. You listen to one meditation, two meditation, three meditation, four. By morning, you surmise, your Golden Retriever will be the buddha. Perhaps you will fall asleep choking back retches from the pain. Perhaps you will fall asleep well.

You start all over again tomorrow.

…………………………………….

‘Your twenties are a time of exploration, not certainty. Get out and try. Don’t sit at home thinking you should already know’.

unknown 6

I am in my twenties. I don’t know how to change the oil in my car, despite my proclamations that I’m the super-feminist. I don’t know if you still ovulate if you don’t get a period, and Google doesn’t seem to be helping me out with this one. I don’t know if I am in the right course, I don’t know who my soul mate is, and I don’t know what I want to do with the rest of my life.

But I do know that this is a life that I never wanted.

There are a lot of very courageous people in this world, many of whom I am blessed enough to love, to gossip with under the stars, to laugh hysterically with, to live with, to make love to, and to take selfies with. There are many people in this world who are infinitely more courageous than I will ever be. 

We’ve all read those feel good stories, read black and white quotations, listened with wide-eyed admiration. We’ve all heard it.

“As hard as it is…I wouldn’t change a thing”

Tumors and tsunamis and tragedy spills from their smiles, and they rest comfortably in their own carnage. 

These are people who I will forever admire, and just as they wouldn’t change a thing, I wouldn’t change them. 

But I am not one of them. 

I have lived with my genetic disorder from the moment that either my Mum or Dad’s side of the coin decided to turn on its head at my conception, and left me wobbling between one life and another. But I have only truly lived with this disorder since I was thirteen, when my tissue truly began to fall apart and left me in a bloodied and broken heap. Before and after, then and now, past and present. However you wish to look at it, just like my DNA, my life is firmly split in two.

That is easy to read. Uncomfortable, perhaps. But it is easy. To live it is another beast entirely. In a few minutes you will have finished this piece, and you get to go home to your own life. I do not get to go home from mine. That is not a statement to elicit sympathy, pity or words spoken with a hot tongue. It is merely my reality in all it’s naked truth.

unknown 7

I want to be a doctor. An intensivist, or an emergency doctor. But I cannot. I managed just two weeks of nursing placement before my placement coordinator sat me down with tears in her eyes. “My darling’’ she began. “This is going to kill you”. I had studied sun and stars for two years to hear these words. Right now, the people I began nursing with will be finishing their degree. Next year, they will have grad positions and they will be living my dream. 

Do not get me wrong; I love psychology, despite what I convinced myself first semester this year. At three in the morning when I am thick with mucous and pain I read coronial reports, research police psychology careers, remind myself of all that I will be. But it would never have been my first choice.



I live at home with my parents and two younger brothers, and I take an immense pride in the unit that my parents built for me (Minus a shower. Don’t you know we’re in a drought?). It smells of vanilla soy candles and golden retriever. But I would be lying if I were to say that living at home at almost 23 would have been my first choice.



I most likely cannot have babies. My fertility specialists believe that the threat to my life would be too great. There is fostering, adoption, nieces and nephews, and Golden Retrievers. And in whatever way they come into my life, I will love them infinitely. But it would not have been my first choice.

I am currently not able to work. I volunteer, I started my own charitable organisation. It fills me with the most profound sense of love and gratitude, and every single day I thank the heavens for all that it brings me. But it would not have been my first choice. 

As I get older, I am quickly learning that learning to fall madly in love with my second, third, fourth and fifty-second choices make other people very, very uncomfortable.

In Psychology I have been learning about the Attribution Theory. In it’s most organic and simplistic form, it boils down to this;

When other people go through hard things, we attribute it to something internal, some inherent flaw within themselves. They are the victim of their own making.

When we ourselves go through hard things, we attribute it external forces. You are the victim of the universe.

I am not a victim, nor will I ever be. But regardless of what way you look at it, my very existence makes the rest of society very uncomfortable. Relatives, friends, colleagues, peers, teachers, strangers all have an opinion on the bullets they believe I have unloaded unto myself.

I do not try hard enough. I don’t want to get better. I just need to toughen up. Everyone else is capable of working/studying/procreation/being healthy, why aren’t I? I just haven’t tried enough things, if only I drank more water/went for a run everyday/became a Nun/ate the shavings of a crayon with a dash of lemonade.



It hurts of course, but never as much as when people don’t ask at all.

How was your day? What are your plans for the coming year? How’s Uni going? What are your hopes and dreams? What are your fears? Are you happy?

Photo on 16-11-2014 at 2.39 pm #3

Truth be known, it doesn’t matter anymore. Because while the rest of society is shifting uncomfortably in their seats, I am studying a 6 year degree, falling in love with handsome strangers, and flirting in hospital corridors. I am writing with my golden retriever puppy snoring softly on my feet, and I am singing in my car as I drive to University. I am putting things in place to have an incredible, if difficult, career, and I am planning my next holiday. I am volunteering and making a difference to the lives of others, and I am loving and losing, laughing and living.

Your twenties may be a time for exploring. Mine is a time for living, as best as I possibly can, even if I would never have chosen for things to be this way.

Your twenties are for thinking that you know.



Mine is for knowing that you don’t.

Most of all, they are for knowing that my life, which makes you so uncomfortable, probably makes me happier than your comfortable life will ever make you.

Ghost


This is a lighter look at my experience of living with Anorexia Nervosa, Body Dysmorphic Disorder and Obsessive Compulsive Disorder since I was fourteen years old. Please be aware that this blog may be highly triggering for people experiencing these disorders, and if you believe you will be triggered, please do not continue to read. This is intended to be a humorous and honest look at my experience with mental illness; it is not intended to be offensive. Most things in life can be funny, your personal experience with mental illness included.

Help for mental illnesses for young people in Australia can be found at Headspace. Recovery is possible. http://www.headspace.org.au/

This blog is inspired by the song ‘Ghost’ by Ella Henderson. I encourage you to listen to this as you read.

Be kind to yourselves,

Jesleen xx

……………………………………………..

denial is strong

“Do I want to die from the inside out or the outside in?” 

-Laurie Halse Anderson, Wintergirls 

In my house, nothing is off limits when it comes to making jokes. Incurable genetic disorder? Ahh, that’s excellent comedy material, and even better that we can triple the weight of the one joke. Mum’s critical illness? Hilarious. Each ICU admission and intubation provides more mileage. Dad and brother’s Aspergers Syndrome? Those jokes are always hilarious, only they are always lost on Dad and brother, which only serves to make it funnier.

There is one joke in our house which has stood the test of time.

‘What do you call someone who isn’t Anorexic?’

Anorexic

Of course, to anyone else, this wouldn’t be funny. Not even for those with the darkest of comedic sense. Maybe my family finds humor in the disguise of a coping mechanism. The truth is, I think they have simply had one too many lasagna thrown at their heads. The thing that is funniest about this joke is that it’s all true.

Anorexics are never Anorexic.

God knows I wasn’t, and how dare you suggest it in the first place. I was being healthy. I was just doing my physio. I already ate. I didn’t feel well.  And if things got really desperate, I would finally explain to you slowly, deliberately (fully aware that you were as daft a box of frogs and unlikely to comprehend what I was saying to you regardless) that the medical industry was not aligned with the social industry, and it best you familiarise yourself with the latest Cosmopolitan magazine so that you could appreciate just how far off the mark you really were.

trench coat

What was the trigger?

That’s the first thing people ask me when I come clean. They look at me, a quiet mix of horror and fascination pressed upon their lips. As though it were a single event, a lone crazed gunman, storming through my synapse in a trench coat with an air of disillusion.

You are going to be disappointed. But there was no trigger, or at least not in the way that you imagine. Biology loaded the gun, and life pulled the trigger.

I was born with the mind of an Anorectic. Obsessive, chronically anxious, a perfectionist, highly sensitive to the emotions of others. From the very beginning, my obsessions revolved around the safety of my family. As a four year old girl I learnt how to resuscitate my critically ill youngest brother, and it became second nature. It was just life. Mum and Dad claim that they would do things differently now, but the truth is, they never had a choice. Their youngest was dying, and their eldest was going to do her best to help keep him alive, whether or not the responsibility was allocated to her.

Every single evening, once I was sure my parents were finally asleep, I would sneak around the house, careful to ensure my secret remained that. Flick. Click. Snap. Tap. Every light and every switch would be checked, double checked, and 52nd checked. Finally, with the night deep and full, I would finally allow myself permission to totter off to bed, knowing that tonight, my family would not burn to death in a freak electrical fire.  And then at five thirty every morning, the same sounds from the kitchen as Dad got ready for work.

Jesus bloody fucking Christ. Why is the fridge unplugged again?!

Dad still shakes his head and continues to be tormented by the electrical poltergeists of the past.

Then the hand washing began.

ocd otter

‘Jess, are you washing your hands again?’

‘…..No. I am….baptizing them…under the taps….’

Of course, maybe baptizing them wouldn’t have been such a bad idea. At least that way it would prove as a greater safeguard against contamination. And for a few years, this worked. Later I would learn that not even baptized hands can protect one from incurable genetic disorders.

I had my biology. And now I had my trigger. Beautiful intelligent, neurotic girl becomes seriously ill, emaciated, crippled, Prednisolone moonfaced, neurotic girl.

And it was as simple and as complicated as that.

So then came the secret sessions with the scale, the forbidden fruit in the shower, the lasagna thrown at my Mum’s sobbing face, the obsessively applied makeup, the years in Eating Disorder treatment programs.

 But I went into recovery.

The thing is, no one tells you what ‘in recovery’ means.

And this is where I find my ghost.

road to recovery

I am in recovery, and I have been for some years. I just don’t entirely know what that means. I no longer actively attempt to starve myself into oblivion, but nor do I actively try to nourish myself. I don’t avoid food, but nor do I seek it out. I think that I am beautiful, but I still cried when my brother told me I wasn’t as pretty as a model (Siblings with Aspergers are fantastic for no pulled punches, brutal, stinging honesty). I don’t hate my body, but I don’t necessarily love it either.

There was once a time, for many years during my attempts to enter recovery, that I would turn to my Eating Disorder every time the going got tough. Got dumped? It’s okay, there is a starvation method for that. Progression of disease? You fuck me over,  body, I fuck you over. Bullied to the edge at school? That’s fine, I have an Eating Disorder in my corner bitches.

Somehow though, over the years, I have discovered that I no longer have a need for my Eating Disorder. It no longer serves me a purpose. It has inexplicably become obsolete. In the past twelve months my Mum has almost lost her life twelve times. I lost my dream career of nursing, and left an emotionally abusive relationship. But not once did I turn to my Eating Disorder. At times I was proud. More often than not, I was frustrated. I didn’t know what to do with the pain anymore. Here’s the crazy thing; I just had to feel  it. And be with it. It’s funny just how all too often we choose escape in place of the raw bloody experience of reality.

Do not make the mistake of believing that this to be confirmation that I no longer have the thoughts or feelings associated with an Eating Disorder. I still have intrusive thoughts of starvation, an at times overwhelming desire to restrict, constrict, cease and desist.

I could act upon them. I want to, or at least my Eating Disorder does.

Finally I decide that I have better things to do with my life.

river to pra

So this is where I am at. A recovery purgatory. Not Disordered, but not Recovered. I am learning and I am loving. Today I made muffins, and I ate them. Last night I told my Mum to fuck off for eating her dinner in a way that my mind decided was not ‘acceptable’. I continue to break my foods into tiny pieces, and I bend my belly over, wonderfully fascinated with the soft folds that is beautiful flesh in place of bone. I still cannot bring myself to open my eyes while preparing meat, and continue to fill the house with smoke, for it’s better to be safe than sorry when it comes to meat with the potential to be undercooked. Dad still shouts the occasional Jesusbloodyfuckingchrist at five in the morning. I choose moments where I feel confident enough to eat mindfully, and will allow myself to be consciously aware of the experience of eating, if only for a minute. I can go to the post office and hospital without makeup, and I no longer need to edit my Instagram photos.

This is where I am at. I am a work in progress. There was once a time that I did not allow myself to believe in ‘Recovered’. These days I realise that isn’t good enough.

So I will keep going to the river to pray.

I will allow it to wash all this pain away.

And I will sleep all the demons away.

But I won’t let the ghost keep me awake anymore.

And now I am off to eat a muffin. It turns out I can make my muffins, and eat them too.

Visceral Science


This blog has very much been inspired by the song ‘Visceral Science’ by Mark Wilkinson. I chose his words to act as gatekeeper for this piece, and as you listen I am sure you will understand. Australia has found within Mark a raw and beautiful new talent.

From this piece I hope that you too will learn to love visceral, and not science.

These words are inspired by my thoughts, my emotions, the nightmares of others and perhaps of myself. I will never tell.

Visceral is a lot more beautiful.

Jess xx

…………………………………………………………………………………….

Visceral

1)      Relating to the viscera. The visceral nervous system

Visceral

2)     Relating to deep inward feelings rather than to the intellect.

It’s 50/50. Heads or Tails. Truth or Dare. Black or white, day or night. A flip of the coin, a hovering hand between a queen of hearts, left or right. Really, it isn’t so difficult to choose. Ah but that’s the rub, The Road Not Taken lamented by you and Frost alike.

Go left and a life of  pitted words.

Right remains but a possibility, unlikely all the same.

You get to choose.

So why is it so hard to get it right?

………………………………………………………………………………………………………………

auustus oblivion

It is not death that we fear, despite all that we tell ourselves. It isn’t the pain in those winding final moments, nor is it the unspoken farewells. It isn’t the pain we leave behind, nor our tremendous relief at those we needn’t bring along. No, it isn’t death that we fear.

It’s oblivion. I am no Augustus Waters, confidence and Cancer beaming from his chest in equal measure. Of course, it sounds a little more wonderful when bellowed from a fictitious dying teenager, swooned over by the healthy and beautiful, full with breasts and plait. It sounds a whole lot less beautiful when from the lips of a 22 year old nobody, disease real and love not.

But the sentiments remain the same; it is oblivion we fear the most. A forever of unknowns, flailing hopelessly in purgatory for the moans to God on a Sunday between the sheets of a new and experienced lover. Do the crime, do the time. Only, when the time is forever, it becomes a bigger ask.

No one tells you what to fear though, when oblivion comes first. Oblivion and I were already well acquainted, and if friends were to prod with raised eyebrows and greedy grins we would confess that we were taking things slow. The truth is, oblivion and I never took it slow.

I was thrust into its lap and told to dance.

What is oblivion? It is nothingness. And I was nothing in all her finery.

visceral bath black and white

One after the other, apologetically I dragged them into my life; Almost all tall, dark and handsome. Some were lovely, in the way that young boys can be. They held my hand and together we swayed awkwardly at our first dances. I pushed them away before they had the chance, and each shared the same stinging, downcast look in their eyes. I know that you, the reader, will judge me harshly. But don’t you understand? No one can leave if you are the one to do the leaving.

I convinced myself of all that society reminded me every moment. I was not beautiful, nor was I sexy. I was not worthy, nor was I wanted. I was but a small breasted burden, and I should at least have the decency to display gratitude to all those who were subjected to my company. We all have our crosses to bear. And one by one I allowed myself to be nailed to them, spluttering apologies.

When I met him, people told me they were happy for me. And they were, of course. I allowed their sentences to remain unfinished. It was easier that way.

I’m so happy that someone will be with you.

couple socks

Finally, I was finding my way out of the oblivion. I was finding my way from nothingness to something-ness.

Together, we were visceral. His lips made love to my scarred and jaded belly, and I never felt so beautiful. The fact I had coated myself in tan didn’t matter. It made the medicine a little easier to swallow for him this way.

We looked at homes, and sourced showers from which he could see me from the bedroom. It was better to be safe than sorry after all. Shyly I mentioned my dream blue boarded home, complete with Vegetable patch and cottage flowers. Now I was embarrassed. Girls wanted those things, not women. Besides, how would I tend to the flowers? Yes, it was silly to have considered such a thing.

I awoke to fitting hips and blood pooling in my mouth. It was not a good day. I reached for the quilt, and was bought back to my senses. Why wasn’t I reaching for my runners? I had no right to not keep him company as he prepared for the day.  I apologised profusely. Just in case my lesson was not yet learnt, he reminded me.

No one else will want someone like you.

It happened so fast, and yet so slowly. There is an old folklore story, and though the exact wording fails me at this hour, I must tell you; I need you to understand. Place a frog in boiling water and it will jump out. Place it in a cold pot and slowly turn up the heat, and it will boil to death.

xray kiss

I was yet another frog stupid enough to believe they would one day be someone’s princess. I never wanted to be a princess; I just wanted to be not too much, and yet enough. A real life Goldilocks.If you were to reach for a scalpel and slice my body along the side, from top to toe, you would see. You would see visceral. Leaking valves and tired organs, grated joints and hollowed bones. Autosomal Dominance and a guarantee of continual failure until one day, I once again find myself in oblivion.

This is what past loves have seen. The lakes that I will never run, the children I may never bear, the life I will never lead, the chemicals I will swallow and the sobs in the shower when I think no one is listening. More importantly, this is what I have allowed them to see.

When it came to lovers, I did not believe that I was anything but my cellular failures. I allowed society to convince me that I was nothing but cracked collagen, a bare faced burden. Most of all,  I convinced myself. I had successfully submerged myself into the oblivion that is a lack of worth. I listened not to the accolades of my colleagues and peers, nor to the smiles from my mentees, not even the red high distinctions scribbled across paper after paper. Instead I made a conscious choice to listen to the voices that further echoed my own, and mistook support for confirmation of proof that I could not, and would not, be loved.

And then came the crack that crept across the floor. When I left him, I was both heart broken and rib broken. My physio gasped. ‘What happened to your rib?’.

I sobbed so hard I broke a rib.

flower footpath

The funny thing about cracks is that something will always grow in turn, to fill the gap.

And in that crack, I chose deep love over intellect.

I began to love myself viscerally.

It was tentative at first; ten minute snippets of meditation a day. Tea drunk in silence while I curled up in a window and pretended I had another 8 lives up my sleeve. Lipstick chosen to impress no one but myself. The pace quickened and I realised things were getting serious. I dragged textbooks to my grave on the bathroom floor, vomit and Freud becoming synonymous, not because I enjoyed it, but because I knew I deserved that coveted Honors position. The hours spent on the train watching people, and smiling in the knowledge that they were watching me. Long letters written to a beautiful stranger, penned by hand, simply so that I could sleep with the knowledge that my words made imprints upon paper.

One day as a friend enveloped me in their arms excitedly at University it dawned upon my cheeks. I had stopped trying to get other people to love me. And in doing so, I had learnt to love myself.

Viscerally, I will continue to break, to bleed, to collapse and to vomit until one day I find myself in a new kind of oblivion.

But viscerally? I no longer need to remind myself that I am enough, and yet not too much. I needn’t encourage myself to believe that I am worth it, nor that I deserve it. I do not lie awake at night wondering if I will ever be loved, and I do not carry myself through the world trying to get them to love me anymore.

Because viscerally, I have made my choice. And I no longer need to worry myself that anyone would choose the former.

It’s not so hard to choose visceral over science after all.

 

 

 

 

 

 

 

One in seven billion


 

Twenty one years, eleven months and two weeks ago my Mum bought me into this world.
Eight years and three months ago, I became seriously unwell with an incurable genetic Connective Tissue Disorder.
Eleven months ago my Mum became critically ill with the only known case of Oestrogen induced anaphylaxis in the world.
Two months ago my Mum was fighting for life on a ventilator.
Today we went shopping.
Tomorrow is Mother’s day.

This blog is for my hero.
This is for my Mum.

Jess xxxxxxxxx

 

……………………………………………………………………….

 

“For a star to be born, there is one thing that must happen: a gaseous nebula must collapse.

So collapse. 
Crumble.
This is not your destruction.

This is your birth.”

Author unknown

 chromosome art

Dear Mum,

You would have taken the fall for me. This I know to be as true as the sick in my belly and the swell in my heart. A few nights ago you asked me how many chromosomes a child receives from each parent. In your eyes I will always be a nurse, the most profound of gifts you could ever lay in my lap.

It wasn’t your fault Mum.

Your reply was as silent as my own assurance.

But it could have been.

And you went back to drinking wine, and I went back to pretending to drink wine, and we planned my future trysts with the spark that only Irish barmen could convey, and lulled ourselves into the parallel universe in which we had found ourselves at home.

gfa

The first day could have been yesterday. Or perhaps it could have been eight years ago. Regardless, what was done was done. I remember crying to you, still a child in every sense of the word. I didn’t know that morning I would be thrust into the land of the adult, and you would be knocked entirely off your own axis.

Mum. I can’t walk.

What do you mean you can’t walk?

And so it was.

I would have taken the fall for you. This you know to be as true as the ventilator gurgling in the recesses of your throat and the ache in your soul. As you headed out the door, proud in the way that only a new coat can bring, I called out. My eyes never left the screen, and my fingers continued to fritter away the hours.

 ‘How many EpiPens do you have Mum?’

‘It’s okay Jess’

And I returned to invest energy I could never afford in to pretending to write assignments, you told me you loved me, and you returned to pretending to gather wood with Dad using strength that has long been laid to rest.

cub loves shebear

The first day could have been yesterday. Or perhaps it could have been twelve months ago. History has a funny way of repeating itself. Regardless, what was done was done. I was still a child in every sense of the word. You were the parent, I was the child. And as you reached for the dishwasher I found myself gurgling in the unfamiliar tangle of role reversal.

Jess, I cant breathe.

What do you mean you can’t breathe?

And so it was.

I was angry with you, and you were even angrier with me. Most of all, we were angry with ourselves. You weren’t supposed to get sick, but then again nor was I. This happened to other people, other families in other lands and other stories. It was their pain to hold, their ache to feel, their tears to drain in the recess of the shower. We were good people. Lightning didn’t strike good people. It never struck twice.

Only, it did. And we could weep, we could grab onto our own flesh and scream. It wouldn’t make a difference. But we did it all the same.

tablet tea

I don’t have any friend’s left.

No one even visits.

I’m just so fucking tired.

I just want a break, just for one fucking day.

I don’t think I can have babies.

My ovaries are going to kill me.

I was never a dancer, and you fondly remind me of it when I try to pretend that failure of flesh was the catalyst for change. You were different. You wore a Miss Australia competitor sash after all, one doesn’t play hanger without having some sense of tightrope. But in this new land we each had to match the steps of a new dance. It was unpredictable, chaotic and desperately lonely. I stepped on your toes more than once, though I was loathe to admit it. You didn’t fare much better.

I’m in pain.

Yeah, well so am I.

But when it came down to it, under the lonely cover of darkness, we moved seamlessly. There were the days you found me sobbing into my shirt on the dog bed. You never raised an eyebrow, and instead took me in your arms. There were the days that I found you sobbing into the Tupperware cupboard, and I never said a word. Instead I reached for the kettle and danced around the missing lids, and together we sat in silence.

me and she bear

It wasn’t all hurt. There were the tram trials and the way we held our heads high as we dangled bags over our arms through David Jones, and stopped to admire boots that were worth more than my car, and we feigned interest all the same. The movies downloaded and the wine and the tea and the forbidden Cadbury inhaled inbetween.

I held your hand in the Intensive Care Unit and watched with terror as they prepared the Endotracheal tube, the ambubag, the ventilator. Each time as another Intensivist surrounded your bed side you squeezed my hand a little harder. You winked.

You were dying, and you were setting me up.

As they told me to say goodbye I started sobbing hysterically and with your last pocket of air you gasped to Dad. ‘Look after her. Look after her’. I will never forgive them for dragging me away, sobbing and I will forever be grateful that they did, so that this blog can have the ending that it does.

Lightning isn’t supposed to strike twice. But it does, and it did. And just as sure as I will continue to fight this until the day that I leave this earth, so too will you.

We can’t die yet. We’re too wicked to be allowed in yet!

 You will fight for me, and I will fight for you.

Most of all though, you will just be my Mum, and I will just be your daughter.

And now I have proof of what I already knew;

You really are one in seven billion.

me and she bear 2