Tag: Spoons

On Fibromyalgia
October 9, 2018 1:30 pm Comments Off on On Fibromyalgia
The first doctor said “it’s a legitimate illness, and it can be very painful”. In some ways, that gave me hope- my pain was validated. The second doctor said “well I don’t really believe in that”. I let him treat me for a year and I think his disbelief did just as much damage as the illness itself. The third doctor said “well it’s just a diagnosis of elimination, it doesn’t mean very much”. By that time, I was immune to the scepticism. It had been three years and I’d heard this a lot.
Fibromyalgia is a condition characterised by widespread pain, extreme fatigue and sleep problems. Some people report having a kind of ‘foggy’ brain, where they feel they can’t remember simple things they used to know. There is no known cause or cure. Sometimes it is attributed to a combination of genetic and environmental factors, especially a physical or mental trauma. Some think it is a problem with the way the brain processes pain, in that all pain is being amplified to unprecedented levels. Others think it’s ‘all in the brain’ (as in our brains are making it up), but I reject this- all pain comes from the brain.
None of this is actually very helpful to someone living with possible fibromyalgia pain. There is really no medicine to help; Panadol and Nurofen are essentially useless (in my experience) and doctors will rarely prescribe anything stronger. This is primarily because stronger drugs are not thought to make any difference to the pain anyway. But it is the case also that too many people believe fibromyalgia sufferers have just made up a bunch of symptoms in order to get access to drugs.
Trust me, it wouldn’t be worth it. I’ve read horror stories online of people in screaming in pain only to be denied proper care in hospital. I’ve heard hundreds of people talk about the years it took to get a diagnosis and the amount of bureaucratic disbelief they had to push against. I personally spent hours of my time with doctors, having MRIs and going over things time again before I was told it was probably fibromyalgia.
Fibromyalgia disproportionately affects women, and I have absolutely no doubt in my mind that this alone has denied thousands of people proper treatment and support. It is a societal shame that women presenting with agonising pain are not believed, are accused of being a drug addict or have all their symptoms chalked down to depression. My hairdresser opened up to me about his struggle with fibromyalgia and it felt like he was talking about a different illness. He was supported, his doctors nipped it in the bud through telling him exactly what treatments (yoga and diet change) would work for him. They even helped him get a nutritionist. And then there was me, sitting there, thinking about how I couldn’t even get my doctor to believe in holistic practices. In fact, I couldn’t even get him to believe me.
People with fibromyalgia are angry. Go on to any online forum and you’ll find people who’ve been trodden on by the system. They are fighting these battles every day, and worst of all, they’re in severe pain during all of it. It’s no wonder the rates of people with fibromyalgia who don’t believe it’s actually a real condition are still pretty high.
For a long time- too long- I have been one of those people. My relationship with fibromyalgia is fraught at best. I’ve been conditioned by the scepticism of those around me to be a sceptic myself. But where has that left me? The word is so hard for me, I don’t even say it. I can’t remember the last time I said to someone “I have fibromyalgia”. Mostly I say “I have chronic pain”. Often I just say “I’m fine.” I have lied to a lot of people about the level of pain I’m in. And who am I hurting? Just myself. The controversy and vitriol directed at fibromyalgia is denying my pain, denying who I am at this moment.
The goal is then to be myself, start making a fuss and start getting people to listen. But we as a whole need to change the way we talk about pain. Change the way we listen to women in pain with no obvious physical trauma. Because I can promise you, if someone tells you they have fibromyalgia, they don’t want your sympathy, your opinion or your drugs- they want you to say “I believe you”.

Miriam Sadler
On Being (Re)Diagnosed
1:16 pm Comments Off on On Being (Re)Diagnosed
About eighteen months ago I wrote an article for Woroni for a Spoons edition, about being a type-1 diabetic. So here I am again, doing the exact same thing. What has changed? Where is my new material? Surely I have moved on, expressed whatever sentiment I needed to last time. Maybe there is a new medical breakthrough in the field? And we are one step closer to a cure? Except, there isn’t, and, we’re not.
Everything I faced eighteen months ago, I still face today, and will face again tomorrow. Inevitably I am just a little more wearied by it all, a little more frustrated that things don’t seem to have gotten ‘better’. But how can they, when I’ve so far rejected this part of myself?
It is like that old myth that lightning never strikes in the same place twice. I was diagnosed with diabetes when I was ten years old, yet as I approach my twenty-second birthday, it feels as though I am dealing with it afresh all over again. I have found that with the diagnosis of a chronic illness comes a second diagnosis; a time much later when you feel the same initial confusion, anxiety and isolation you felt all those years ago. A time when you are, in a sense, reawakened to the fact that this illness is a fundamental aspect of your life. The tiny part of you which harboured some false, unhelpful hope that it was all only temporary is shattered, and in its place crashes the weighted realisation that this is permanent.
For me, this probably correlates with a more defined move into adulthood. Along with the usual angst and worries we all feel about the future and its uncertainty, there is an additional feeling of suffocation in acknowledging that whatever direction you are headed in, you will have your illness trailing along behind you the whole time. Financial anxieties are a given; before I even engage in the debate between smashed avocado v owning a house, my thoughts are whether I will eventually be able to afford all my medical costs. My insulin pump, a machine which administers insulin through a cannula, costs around $10,000 if not covered by private health insurance. Those who know me are aware that I do not have a single maternal instinct within me; yet if I ever want to consider having children in the future, being a type-1 diabetic already means I have a higher chance of infertility, as well as carrying increased risks of birth defects, heart abnormalities and miscarriage.
Then there is the rather morbid issue of confronting your own mortality almost on a daily basis. In addition to a host of complications, such as neuropathy, mismanagement of type-1 diabetes can be fatal. I don’t get anxious about growing old; I get anxious that I may never get the chance to grow old at all.
I remember crying to my friend after school one day when I was eleven, telling her that I wouldn’t live past the age of fifty. Now, I actually have no idea where I had pulled that number from, and it was fairly dramatic and unfounded, but when something as simple as forgetting a spare AAA battery for my insulin pump can be a life-threatening mistake, it isn’t easy to remain so rational, or even hopeful, about the future. Part of me still hurts for the scared and confused young girl that I was, and part of me still empathises too – because she seems to have resurfaced lately.
So, the shiny allure of finally receiving Youth Allowance has been somewhat eclipsed by being re-diagnosed. However, instead of ignoring it, or trying to so desperately pretend it doesn’t exist, this time around I am acutely aware that the only helpful response is to accept it. In the past I have tried to prevent it from limiting me in anyway, but anything I achieved I did so fighting against my body: I wanted to prove that I could accomplish things in spite of being diabetic, rather than being capable of things as a diabetic.
To ‘embrace’ my illness is a bit ambitious for me, but a good first step is at least acknowledging it as something that shapes the person I am and aspire to be. That doesn’t mean it has to define me, but if I don’t start aligning goals for managing my illness with my ambitions for the future, I may not have a very bright one.
If I compare what I wrote last year to what I am writing now, I realise that before I was challenging others to understand and accept diabetes, without actually having done that myself. My new challenge is now a personal one, and I hope that maybe in eighteen months’ time I will be able to reflect on this period of re-diagnosis as a formative and strengthening moment. And maybe I will even write about it again.

Stephanie Kerr
That One Time Google Told Me to Figure it Out Myself.
1:06 pm Comments Off on That One Time Google Told Me to Figure it Out Myself.
I’m someone who is in limbo. On paper, I have a disability, although this is something that I’m too afraid to say out loud. I’m afraid that people will not believe me or even criticise me for claiming to have a disability. A big part of me agrees with them, and that’s why for the most part, I don’t identify as someone who is disabled. I’m not physically disabled, and to most people, I don’t seem to be limited in what I can do.
However, every day I have to take medication in order to function as a regular person. I can’t do certain things that most people have the option of doing. Every once in a while, something will happen that will remind me that I am not normal. That I have a mutation that nothing or no one had any control over.
I suffer from epilepsy. Juvenile Myoclonic epilepsy, to be specific. When I saw a post asking for those who identify as suffering from a disability to share their story, I kept scrolling. I assumed it didn’t apply to me. It didn’t stop me from asking myself – is epilepsy a disability? Am I someone who is, on paper, disabled?
I turned to Google (I know, don’t judge me). According to Epilepsy Action Australia, “most people with epilepsy do not consider themselves to have a disability especially if they do not experience significant limitations…Regardless of how or when epilepsy developed and if it is completely controlled with medication, people with epilepsy are protected by the Disability Discrimination Act.”
So essentially Google was telling me to figure it out myself – do I identify as being disabled or not? As someone who has grown up with a disabled sibling and seen the struggles, stigma, assumptions and limitations that my sibling faces – no, I don’t identify as suffering from a disability. When I think about this, a part of me feels ridiculous for even considering writing an article about me and my epilepsy.
However, before I settled things then and there – I decided to turn to one other source of information. The source that always manages to answer the questions that Google can’t. I went to my Mum.
So at 11:30 pm on a Tuesday night, I flicked Mum a message, asking her if she thinks my epilepsy is a disability. Her answer reminded me of all of the changes myself, and my family, have had to make. Of how my epilepsy has really impacted my life.
Every day, twice a day, I have to take medication. If I don’t, then I start having fits. One fit, and I legally can’t drive for 12 months. When everyone else was turning 16 and getting their licence, I had to wait 18 months before I could drive due to fits and medication changes.
I also constantly find myself in a tricky situation – the main precipitators of my fits are stress and lack of sleep. As I am a university student, stress and late nights are unfortunately too common. Exam period has the extra stress of me waiting for a fit to happen, but I’ve been very lucky that so far I haven’t experienced any major fits or seizures.
However, one of the scariest parts about all of this is that generalised tonic-clonic seizures (also known as grand mal seizures, that cause your entire body to spasm and convulse and there is nothing you can do to stop them) are reported in nearly every person who has Juvenile Myoclonic epilepsy. I have never suffered from one of these, but I have been told to be prepared for it. I don’t know when, where, why or even if it will happen – all I know is that at any moment I could go into a full-blown seizure and have no control.
When I think about my family, I am reminded that my epilepsy has had an impact on my them, and not just myself. From the medications and emotional mood swings that go with them to the VERY expensive neurologist appointments – my family were there for it all. The random calls I get from Mum reminding me about SUDEP (sudden unexpected death in epilepsy) and how she is worried I’ll become a statistic reminds me that even if I’m not worried about my epilepsy, my family certainly is.
Ultimately, I’m lucky that I have access to medications and specialists which allow me to live a relatively ‘normal’ life – something which I have realised is a privilege that too many people are not able to access. I would encourage everyone reading this to go and support groups such as the ANU Disabilities Student Association and advocate for those who have disabilities to be given a fair go. From the NDIS to the resources that are available here at the ANU we can always do better to support those who rely on these resources –
– and we must do better.

Madeleine Sinnis
Robot Leg
1:02 pm Comments Off on Robot Leg
She called it a robot leg.
I mean, I wished it was. That it would fizz and whirr into motion, then propel me across that primary school hall to that the other side so far away, so I could look back to her, and look around, and Did you see that?
I think I nodded along. Yeah, it’s a robot leg. What else is it? What else could it be?
Did they have a word to describe them? Barely padded plastic brackets that I had to be fitted into whenever I grew (they had a Rubik’s cube there in the clinic in Sydney), that the specialist (also in Sydney) would always ask about, that made me need to shop for two shoe sizes, that got so hot in summer, that got discoloured around my toes where I would press in, that stuck to my skin and kept my ankle from moving because if you let it then it would move and tippy toes – tippy toes were bad.
A splint, I think. But that was a word from another world. I didn’t know what the doctors meant when they said it.
So I nodded along to robot leg.
Cool! She smiled a bit, then walked off to somewhere else.
Was that- was that me? Hey – I was the robot leg kid. Robot leg. Robot leg. The robot leg was cool.
Optimus Prime had a robot leg. He had two robot legs, and they had wheels on the side, and would fold backwards when he turned into a truck. And he was cool.
And it would go clunk, clunk, clunk when I walked but that was the sound of the robot leg, and it was cool.
Yeah, robot leg!
But then I noticed that all the other kids didn’t have robot legs. They didn’t seem to need them. And they could run, and play handball, and walk through the bushes without getting twigs stuck inside their legs.
Faster, easier, more balanced. Perhaps I wondered if I would be able to move as fast, as easy, as balanced if I didn’t have a robot leg.
And the robot leg was cool, but wasn’t it also cool to do all that other stuff, go out there, and tumble, and roll, and play? Soccer was a foreign word. There was no point trying in the cross country because I knew I’d be at the end. I threw up a barrier at even the notion of speed. It wasn’t for me. Couldn’t be for me. But wasn’t it cool when they did it?
I wasn’t the only one with a robot leg.
His had camo on it. It was gaudy because the brown looked like skin, and the robot leg wasn’t made of skin. His was worse than mine. He had more of a limp, needed to wear glasses. I saw him at events, sometimes at the Governor-General’s house with the party pies, sometimes in the Exhibition Park with the fire truck and everything – but I never talked to him. It was like-
It was like a funhouse mirror. Things blurred and distorted – blown and exaggerated. Things ballooned, bloated; they were ugly, unnatural masses, and they didn’t work properly, and nothing fit. He didn’t run, he didn’t play handball, he didn’t go walking around in the bushes.
And if he’s reading this right now, I’m sorry. Because it was them, or him, and I chose them.
I hated that robot leg. I wish I could have just said ‘oh, cool’ and walked away from it, like she did.

Jeremy Tsuei
OCDon’t
12:47 pm Comments Off on OCDon’t
I’m sitting in a cafe just off-campus sipping overpriced coffee at 3:30 in the afternoon when it occurs to me that I don’t know how to write this story. I can give a list of dos and don’ts, but that’s kind of overplayed, isn’t it? Lists are, by and large, boring. I’ve written and edited too many in this past semester. There’s got to be something else.
I could write a poem – sure, it’s been a while since I last sat down and put my thoughts down in that way, but leaving room for interpretation means nothing can really be pinned on me when it comes down to it. Oh, you read that poem as a metaphor for [insert subject here]? Cool, cool. I’m open to that.
Maybe I should tell this story for what it is: a story. I was nineteen when I got my first real job at a cafe, and one of the supervisors was showing me the ropes. She was heaving the doughnut mixing bowl to the dishwasher and blasting leftover dough off the rim with the pressure hose. “Usually people just leave it here,” she shouted over the spray, “but I’m a little OCD, so I clean it.”
I laughed politely and changed the subject. A year later, I had another job, and another supervisor said the exact same thing. I don’t doubt that any workplace, in food service all the way to Tesla, is free of the most tried and tested joke in the book: I’m a little OCD. Aren’t we all?
Here’s another story: I’m fifteen and talking to a psychiatrist because I freeze up and panic when there’s a mess. I’m sixteen and my therapist tells me that no, most people don’t have a capital-T Thing about the number five. I’m seventeen and I graduate high school with a decent ATAR – nothing to brag about because I figured that I didn’t really deserve the extra points from disability support. I’m eighteen and uni is great, except I’m taking three showers a day to make sure things stay that way.
The ‘too long, didn’t read’ definition of Obsessive-Compulsive Disorder is this: an anxiety disorder categorised by the presence of obsessive thoughts and/or compulsive behaviours. Obsessions are recurring intrusive thoughts that cause significant amounts of distress; compulsions are the repetitive actions or counter-thoughts used to combat that distress. Here’s the kicker: people with OCD are fully aware that most of the time, the connection between our obsessions and compulsions is totally arbitrary. I know three showers aren’t going to give me an HD-average, but damn if my OCD is going to test that. This is magical thinking in action; if I stick to this completely random, capricious routine, then all the things I’m scared of won’t happen.
Here’s the thing: whenever someone makes an OCD joke, no matter how benign, it takes that whole experience and slam-dunks it in the trash. According to the Royal Australian College of General Practitioners, approximately 1.9 per cent of all Australians live with OCD. That’s just a conservative estimate because this condition is so heavily stigmatised that people don’t want to talk about their own experiences. Whenever someone makes an OCD joke, it’s more than just making a joke: it’s trivialising the stories of every single one of those people, and more.
I don’t want to sound preachy – we all know by now that preaching just pisses people off. Preaching is what pushes people away, and right now I want to connect us through the common goal of not being a dickhead. So, let’s try it out for a change: don’t be a dickhead. Next time you want to describe something as OCD (and this goes for any disorder), take a second to think about what you’re really saying. Because eventually, I want to tell this story without being just another part of someone’s boring repertoire.

Anonymous
The Importance of Surface-Level Awareness Raising for Mental Health
12:40 pm Comments Off on The Importance of Surface-Level Awareness Raising for Mental Health
Eleanor is a member of the batyr@anu executive team and has spoken for batyr.
In the wake of large scale events, such as Mental Health Day on 10th October, there is often conversation to do with the value of awareness-raising campaigns. People may question the value of such initiatives that seem only to only scratch the surface of the tough issues, or even ‘trivialise’ the lived experiences of those with mental ill-health. Messages such as ‘reach out’, ‘ask your friend if they’re OK’ or ‘self-care’ can feel empty or potentially patronising to someone who struggles with ‘real’ deep-seated demons. In the ANU context, these campaigns can feel especially empty given the strain on the mental health and pastoral care resources available and the over-saturation of government outreach bodies.
I’d like to make a case in favour of these campaigns; to demonstrate that they make an impact upon the community by doing more than just getting people ‘talking about it’. While only, for example, writing down ‘one thing I’ll do for my mental health this year’ may seem meaningless, it can be the start of intention setting and a conversation with friends. In no way do organisations in the early intervention campaign space think they can fix major issues, such as overworked counsellors and poor quality of service. They aim, instead, to start discussion before and beyond when many individuals reach a crisis point. A seed planted is worth far more than nothing at all, especially when it doesn’t require excessive amounts of effort from the recipient. The reality is that most people don’t often set aside a dedicated period to talk about mental ill-health and check in with each other, so having a day or an occasion is necessary. It is often friends who are first responders to disclosure of mental ill-health, and it is important to nourish a culture of acceptance and proactive listening within that demographic. Rather than being shallow, these campaigns are an important way to broach a somewhat uncomfortable subject for many people.
This is especially important when people of a variety of backgrounds and levels of exposure to ideas relating to mental ill-health convene in a place like a university, so as to avoid a self-perpetuating stigma cycle exacerbated by lack of understanding. Mental health awareness campaigns should aim to be intersectional and cater for a variety of experiences, by understanding that different cultures, abilities, genders (among other things) all experience mental ill-health differently. This is due to the combination of various stigmas they must contend with. For instance, not everyone can relate to ‘keeping a stiff upper lip mentality’ as a prerogative and similarly, not everyone is comfortable talking about ‘feelings’. Issues relating to identity and acceptance can also be a major source of stress for young people, making this especially important.
Ultimately, the aim of these campaigns is to promote understanding, leading to a climate in which people feel as though they can seek help. However, it is also worth noting that increased help-seeking leads to increased demand, so it is important that the support is there for those who seek it, so as not to be a discouraging experience. If most people in the community understand the prevalence of these situations, and friends can also recognise symptoms of mental ill-health in their peers, a more proactive and recovery-oriented environment is created for those in the middle of a period of poor mental health.
It is impractical to initially engage a wide audience with sudden deep analyses of the scourge of mental ill-health upon the population. Sometimes it is necessary to cater to a particular audience, on a practical level, as the general public is not necessarily inclined to want to listen to information that can get them down themselves. Presenting the issue of mental health (with sensitivity of course) in an upbeat and smile-first way is both pleasant and pragmatic rather than ridiculous. This is the way in which organisations are often able to recruit wider support – such as in the corporate sphere – where issues such as ‘image’ do come into play. At the end of the day, these are the bodies with resources to contribute towards genuine research, education and general progress when it comes to the support of people living with mental ill-health. It may be worth spending a bit of money on merchandise or social media if it means that it will one day result in a substantial donation. Such a dilemma is one faced by many of those in advocacy roles, but an outcomes-focussed approach can be preferable over a highly principled, yet unproductive, one.
However, mental health advocacy is of course about more than just the slogans and the marketing. Despite the stigma surrounding the more common examples of mental ill-health (like depression and anxiety) being gradually broken down, this is not applied universally across the board. There certainly needs to be more attention paid to the less commonly understood varieties of mental ill-health. There remains a divide between the ‘crazy’ and the ‘down/stressed’. Whilst people are often happy to talk about mental ill-health in terms of ‘wellbeing’, conditions such as bipolar disorder and eating disorders still often elicit some level of judgement and the potential perception of fault of the individual. It is generally more acceptable to a degree nowadays to be ‘not doing so well’ – people are practicing greater forgiveness for themselves and each other.
Yet, there are certainly some problematic characteristics of the ways in which ‘not being OK’ can be romanticised in internet culture and how the narrative of ‘I have problems so I’m different/special’ is played out in the minds of young people as a result. It is also important to note the divide between having a ‘bad day’ and having substantial periods of mental ill-health, so as not to create misunderstanding or to invalidate the experiences of those with these difficulties. This is where health providers and educators can work together to elucidate what mental ill-health actually looks like. Furthermore, there is a place for dedicated organisations that aim at general prevention, reducing stigma and wider culture change – such as batyr. It is going to be the university students of today at the helm of meaningful whole-community change in a decade or so. This doesn’t have to necessarily be in direct mental health action, but can be involved in disseminating attitudes in the workplace in the long term.
So, next time someone on campus or at your residential hall wants to run what seems like ‘just another awareness campaign’, know that, whilst there is still much to be improved upon in the mental health advocacy sphere, it could be the conversation that helps a person too afraid to address topics that are ‘deep’ or ‘difficult’ to speak up. Whilst many mental health services are terribly under-funded and those contending with mental ill-health are under-supported, it is still important to open dialogue. If an environment is created where help-seeking for a mental health condition is encouraged, that could be the difference between one person reaching out or suffering in silence. If a simple campaign makes even a bit of a positive impact on someone’s well-being, surely then, it’s worth it.

Eleanor Armstrong
Creating Everyday
May 7, 2018 2:57 pm Comments Off on Creating Everyday
A new form of palliative care has recently been introduced in the Netherlands. Hogeweyk is the world’s first dementia village; an enclosed society built for people living with dementia. They can do errands such as buy groceries, get haircuts and dine out. From choosing the sugar intake in their coffee to hurrying off to work, a day at Hogeweyk allows patients to imitate even the most mundane aspects of their lives before being diagnosed with dementia. Within the gated community, residents are free to roam around and take walks along designed streetscapes. The only locked door is the at the reception, where new residents are admitted in and outgoing residents depart. Instead of locking residents up in an elderly care ward, the concept of a dementia village like Hogeweyk respects the conviction of human life and the freedom of choice. The decisions made by one with Alzheimer’s at the village are recognised as legitimate as the convictions by one without it. There is no right or wrong when it comes to the reality that residents create for themselves. If you want to stand at a bus stop to go to work today, you are allowed to do that for as long as you believe you need to. This normalcy and routine was carefully designed and promoted by the founder of Hogeweyk, Yvonne Van Amerongen, and is the future of palliative care.
Hogeweyk groups different types of individuals according to different aesthetics. There are seven lifestyle themes to live in: artisan, upper-class, cultural, urban, homey, Indonesian or Christian. Everything is built around the focused theme – from the a plate’s design to a room’s smell. This is done to ensure a smooth transition into the village and to bring in a sense of semblance to their past life. Moreover, residents who have chosen to reside in the same theme are more likely to share the same values and enjoy the same activities, maximising the potential for friendships in old age and reducing memory loss. For example, if you were a high-baller in your time, you would probably feel most at home in the ‘upper-class’ lifestyle, where residents would have high-tea and listen to classical music. The artworks hung on the walls would be idyllic oil paintings and portraits of aristocrats. The furniture would be grand, but slightly non-functional, plush but a little intimidating. Everything possible to mirror a resident’s way of life is integrated through the collaboration of dementia carers, architects and interior designers.
Can the concept of the Netherlands’ Hogeweyk be successfully applied to different cultures and different parts of the world? We are beginning to see this concept applied and curated internationally, given Australia’s first dementia village, Korongee, is set to open in Tasmania in 2019. The lifestyle themes coming to Tasmania’s dementia village range from ‘tradie’ at one end of the spectrum to ‘artist’ at the other end.
The creation of such a microcosm is reminiscent of the experience we expect at an amusement park, where we want to get lost in the confines of a new reality. If you have been to Universal Studios, their all-white performers and the scent of turkey legs is a reproduction of a dreamy 1980’s America that appeals to those who like it. To some, believing in a false reality is attractive where you live the rest of your life perfectly content in an artificial reality. The idea of creating a world within our own is isolating. It would mean to live in a bubble where power is manifested in knowing the real world. This power segregates those who are ignorant and those who have this power of understanding and reason. It is like an episode from Black Mirror, except the patients never find out they are living in a reality built and monitored by others. It seems creepy to walk into a grocery store, bring your groceries to the cash register and ‘pay’ for it when the worker there is a qualified dementia carer, not a supermarket checkout staff.
Being conscious of reality, we recognise the tradeoff between the truth and fiction, but it is questionable whether these residents face the same conundrum. Every lie told by the workers at Hogeweyk could really be a backhanded form of mercy. For people living with dementia, there is no sense that Hogeweyk is artificial or that they are being duped. Residents are simply happy with the freedom of choice and reassured by its normalcy. In the end, when we start to lose our faculty of reason but our convictions remain as strong and real as ever, we should respect the power of autonomy. I believe the best way to preserve that is through the establishment of dementia villages. I would be grateful to be in one if I were to get dementia, and who knows, maybe the brain really is in a vat and our entire lives are a simulation.

Woroni Comment
Science/Econ Student with Paraplegia Insists that “Everything is Absolutely Fine”
March 21, 2018 12:55 pm Comments Off on Science/Econ Student with Paraplegia Insists that “Everything is Absolutely Fine”
Local flexible-double student Ben has insisted that “everything is absolutely fine” while making his way from his 11am macroeconomics tutorial to his 12pm Biology lab in his wheelchair. With the AD Hope building elevator out of action and Melville Hall stairs too crowded to approach, Ben takes the long way around the front of the BPB carpark and Centre of Arab and Islamic Studies. He then propels himself along the university’s once peaceful path adjacent to Fellow’s Oval and the Chifley Library, dodging fast and slow walkers alike by swerving on and off the grass.
“I really don’t mind, I love a bit of extra cardio”, Ben insists, wiping the sweat from his forehead. Ben must then ease his way down to the campus’s most narrow bridge and back up the gradual slope to the JCoS side of campus. Hours later, Ben will make his way back along this path to his home in Lena Karmel Lodge, a mere 1.2 kilometres away.
“I know the Disabilities Student Association like to make it seem like there are accessibility issues in the pop up, but I like to think of it more as a challenge, or a game”, Ben told Woroni enthusiastically, “the added adrenaline of whether I will make it to class, and how I’m going to get there, really adds to my workout”.
The Kambri site is due to be completed in late 2019, meaning Ben will likely graduate before he is able to enjoy a flat, open space on campus again, but – just in case it wasn’t clear – he insists that it’s “totally fine” by him.

Amelia Richardson
Not An Excuse
October 23, 2017 1:26 am Comments Off on Not An Excuse
As someone with both anxiety and depression, I find that misunderstanding fuels much of peoples’ perceptions about who I am and how I react to things. Yet 45 per cent of Australians will experience a mental illness in their lifetime, and in a single year one million people experience depression, and two million Australians cope with anxiety. These numbers are even higher for university students. One out of every three students has thought about killing or harming themselves.
Balancing work, studies, internships, extracurriculars, relationships, social lives, and physical activity is difficult for anyone. But it takes an additional tole on those with anxiety and depression. People can experience one or both diseases, and they manifest themselves in various ways. For some, they cope by overexerting themselves and signing up for every club, musical, ANUSA activity, work 50 hours a week, and take four courses. Others obsessively overthink about every decision and interaction. Others remove themselves from social situations and lock themselves in their rooms. Some feel like sitting up and swinging their legs from the side of their bed each morning is as daunting as hiking Everest. Others experience the emotionally and physically exhausting hell that is a panic attack. For me, my anxiety and depression manifest in all of these ways and more at various points throughout my life.
Everyone has a different experience and mine is just one. But I want to share my experience with you because of the shockingly rude and misunderstood reactions some my friends and classmates had during the most recent battering of essays when I told them I received an extension. Because I with Access and Inclusion, I am allowed to receive extensions on my essays. However, being the overachiever I have always been, taking an extension somehow feels like a failure. So I either wait until the last possible moment to request an extension, or I receive a 24 hour one. For that little voice in my head that is incessantly telling me that I’m not good enough, this is a fair enough compromise. However, it seems that to others this makes me something else.
Oh, so you were just lazy this weekend and didn’t feel like writing?
Lucky! No one will ever give me an extension when I’m hungover!
Well, that’s not fair.
Scoff! I’ve never taken an extension, not even during Year 12 exams.
You only did well because of your extension.
When each one of these was said to me, my stomach turned, my chest clenched, and my eyes filled with water. These were people who knew I have anxiety. At first, I was sad and angry, but then I tried to picture it from their perspective: University students dealing with the same deadlines as me, the same amount of work, the same pressure to balance their social and academic lives. They were stressed too and probably felt it unfair that I was granted an extra 24 hours to finish my essays.
But it’s not unfair.
To me, what feels unfair is waking up every single day feeling like an elephant is sitting on my chest. Missing class because no matter how many breathing exercises I do, I can’t calm down enough to go. Taking a mental health day from work but not being able to go outside for fear that my boss will see me and think I’m not actually sick. Slightly hurting my friend’s feelings and being afraid for the next two weeks that she hates me and never wants to speak to me again. Afraid that if I take a Saturday to do uni work, my boyfriend will break up with me. Staring at a blank Word document for days, but every single time I look at it, I have a panic attack. Having a panic attack: quickened breathing, heart rate above 130, tight muscles, punching myself in the face, screaming, crying. Thinking every bad thought I’ve ever had about myself while simultaneously thinking absolutely nothing, scratching my skin raw, clenching my fists till I bleed, pulling my hair out, feeling completely alone.
My depression and anxiety were at its worst from August to October 2016. I was taking four courses, working 20 hours a week, exercising regularly, and doing my best to have an active social life. I earned excellent grades, lost weight, and was in a loving relationship. But what my classmates, friends, and professors (including one who wouldn’t grant me an extension because I wasn’t with Access and Inclusion and he considered my two-week old Mental Health Plan that said I had moderate to severe depression, suicidal thoughts, and anxiety outdated) couldn’t see were the panic attacks. At their worst, they happened three times a day, often each one lasting over an hour. I would scream and cry in private, and when they would happen in public, I would run away and cry behind a bush. I was trying to push everyone who loved me away because I thought it was what I deserved. Luckily they hung on and helped me get through that semester, and I will be forever grateful for their love and support.
Empathy can be difficult, especially when you can’t even imagine what depression and/or anxiety must feel like. But my advice to you is to be an ally regardless. No one wants to have these mental health issues; no one is proud to have them and feels lucky that it means they get an extension. Be supportive, be understanding, ask questions, and no matter what don’t tell them it’s unfair.
And if you’re experiencing these or any other issues at the ANU, register with Access and Inclusion!!! I cannot stress this enough. It took me over a year to do because I felt like I was giving up. But when your brain is constantly kicking you and putting you down, it’s okay to go somewhere that is literally designed to help you pick yourself back up.

Laura Wright
Reconciling Wasted Days
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Wasted days are those days where you can’t get out of bed, where you struggle to get anything done in the day that doesn’t involve Netflix and a mound of blankets. We all have them. Typically, on these days you have a to-do list that you need to complete. It’s not necessarily urgent, but a list nonetheless. Maybe the pile of washing in your room, or that chapter in your textbook that you need to read, or the multiple assignments you should be starting. Whatever it is, it’s there. That list of things can eat away at you. It reminds you that you need to be doing something, even when your body is telling you that you are not capable of anything. You’re exhausted.
It’s easy to feel guilty. Sometimes, the feeling of guilt makes the blankets feel heavier and your body feel weaker – until the guilt is the one making you stay in bed. I used to call these ‘wasted days’. I called them wasted days because the guilt reminds me of all the things I could have achieved if I’d just gotten out of bed. Even if I manage to do something later that day, I feel regret for not doing more. I’ve tried to stop calling these days wasted. It’s difficult, and even as I’m writing this article, I can count a day this week that feels wasted. It doesn’t matter to me when I feel guilty if I’ve had a successful week. For me, last week was very successful: I did four assessment pieces and a first aid course, plus I worked at least two days. Yet the fact that I didn’t get out of bed until five in the afternoon on Saturday weighs heavily on me. I keep thinking about how I should start another one of my assignments, or read the book I need to for class, or the million other things that I need to do this month. But I needed that day. I needed to let my body rest. I would not get angry at my phone for not receiving a call when it has run out of battery, and I will not get angry at myself for resting.
It’s difficult because our society doesn’t regard sleeping all day and watching Netflix all night as helpful, productive or necessary activities. But let me tell you some things that I did achieve on Saturday. I got eight hours of completely unbroken sleep. I got to cuddle my cats and enjoy their presence. I got to relax my muscles and stretch. I got to watch the entirety of a TV series that has been on my list for months. Most of the time those things are unachievable for me. I scarcely get five hours of unbroken sleep because I wake at three convinced that I am running late for my nine-am meeting, or that I am unprepared for the day ahead. I rarely get to enjoy my cats because I’m always pushing them away when I need to get assignments done, or I’m angry when they want attention because I am focusing mine on ‘more important things’. I do not get to relax or stretch because it’s very much non-stop from the moment I get up to the moment I go to bed. And watching TV, yeah, I do so frequently but it’s always in the background while writing an assignment or while I’m falling asleep. Yet these moments of enjoyment are never at the top of my to-do list for Saturday, but that doesn’t mean I don’t need them. Sunday was a struggle as well, but I was able to finish more assessment and do the online component of my first aid, and I wouldn’t have been able to manage that if I had pushed myself on Saturday.
So, I’m re-evaluating the term ‘Wasted Days’. I am not wasting my days. These are recovery days, rest days, recharge days, or whatever you want to call them. They are necessary. We do not lose anything in these days that we can’t regain later but, we cannot regain rest when we are already overdue.

Shae Maree Nicholson