In this interview she discusses how her own experience of anxiety makes her work better. When we asked her to interview herself about the workings of her creative mind, she suggested instead that she might be best questioned by two women closest to the action, characters from her latest work in progress…

Alex : Nessie?

Nessie : Hmmm?

Alex : Are you awake?

Nessie : Well, I suppose so, Alexandra. I must be. I’m talking to you.

Alex : No need to be haughty with me, Nessie. I was just going to say that she visited us, were you aware of that? Judith. I thought we were disappearing, but Judith turned on the light and looked at us.

Nessie : Oh, is that what that was? Yes, I felt the glare but I closed my eyes. Hmmm, I’m not sure that I’m hopeful that it means anything.

Alex : Don’t be silly. She’ll be back, I know.

Nessie : I was beginning to feel quite comfortable in this state of darkened inertia. I’m getting old you know. And lazy. I’m not sure that I’m up to all this scrutiny, all this getting up and living again.

Alex : There you go again. Look, anything is better than oblivion. But on the other hand, I have to say I’m pissed off. She got us into this situation and then abandoned us, just like that.

Nessie : Yes, but she’s set me up for a lot of pain. Oblivion might be better than that. Actually, I don’t really know where we are or what oblivion really is.

Alex : We’re in her head. We live in her head, in the world that’s in her head.

Nessie : She must have a big head. I can’t say I understand any of this.

Alex : What really annoys me is the way she’s deserted us. She’s like a puppeteer who’s pulled her hand out.

Nessie : There’s probably other stuff going on. She’s got her own life to love. Ha ha, I mean, to live. That was a Freudian slip.

Alex : It’s strange when you think of it. She’s living her life in her world, and inside her head is our world, and inside our heads, we both have our worlds too. And she, she might be an entity in someone else’s head.

Nessie : Oh dear, Alex. I’m confused. I don’t like the feeling of just being suspended like this. I feel like a flag in the wind flapping and fraying away to nothing. It takes you to those questions of who made the world and what was there before that and how will it end. If she doesn’t come back to us, how will we end? If she dies, will we be confined in this space of unfinished story, or will we die too? It seems strange that we’d die too, just because she did.

Alex : It depends on whether we live in her head or whether we have our own separate existence. I mean, it’s because of her, it was her, Judith White, who launched us into where we are now.

Nessie : … so you’re suggesting, if she died, we’d be left here, stuck.

Alex : Maybe. But we’d probably slowly wither, without being fed. We need her guidance as to what to do next. She’s nuts, really.

Nessie : You shouldn’t say things like that about our creator.

Alex : It’s not a value judgement, it’s just the way she is. She’s an insomniac. She’s anxious. She cares too much and doesn’t care enough. She cares so much that it becomes too big for her and then she lets everyone down by going away. I think that’s what’s happening with us.

Nessie : Sounds like excuses to me. What’s anxiety got to do with it?

Alex : Well, she’s so anxious to do a good job that it becomes too much. If she doesn’t do things, then she can’t fail at them because they’re not done. And if no one hassles her about them, she’ll gradually leave them alone, but she’ll feel bad about it. Then she’ll feel so bad about it that it becomes too big. Overload. It’ll be this big thing hanging over her. And then finally it swallows her up.

Nessie : Are you talking about us?

Alex : Not just us. About a lot of things. Have you noticed sometimes, she crawls in here and joins us. Silently, like a heavy night shadow, and she just curls up in a corner with her back to us. I never know whether she’s listening or sleeping.

Nessie : What? She crawls into her own head? Sounds like gymnastics to me. I’ve never noticed her.

Alex : Well, it’s true. And then just as suddenly she gets up and slips away again.

Nessie : That doesn’t sound particularly anxious, more like a highfalutin way of describing laziness.

Alex : Well, it’s not. When she does get it together to do things … say, if someone starts hassling her to do things, like giving her a deadline … she’ll get into gear. And she usually does a job that’s not too bad, and then she feels good again, until the next job or task or project starts building up once more.

Nessie : Perhaps we should hassle her.

Alex : What do you mean?

Nessie : Well, we could hassle her to start moving our story ahead , to start winding us up and moving us along. We’ve been patient enough. Actually you’re right, I do want to get moving, to come to life again. And I want to find out whether I lose all my money.

Alex : You seem to know more about this than I do.

Nessie : There’s more to me than meets the eye! So … let’s be squeaky wheels. Show her we’re here and that we won’t go away! Because basically, when she’s writing, she’s happier than when she’s doing anything else. So we’d be doing her a favour. When she’s actually head down and working, the world’s her oyster.

Alex : So we must be her little pearls! Ha ha. But how are we going to go about this?

Nessie : Well, we’re in her head, so let’s just get into her thoughts. Just sit with arms crossed, not moving. Get in the way. Like fat old elephants sitting in front of the Santa parade!

Alex : Or kids hitting pots with spoons in the middle of a concert.

Nessie : Yes, we’ll annoy her, like babies wanting a breast, like alcoholics wanting booze, like …

Alex : Anyway, yeah yeah … I think we’ve made our point. So what are we going to do?

Nessie : Just annoy her. Like you’re annoying me. So that she has to write our story to shut us up.

Alex : But what we will we do?

Nessie : Just get on and live our lives, noisily, so she notices …

Alex : But we’re dependent on her…

Judith : Oi. Stop your squabbling you two.

Alex : Hey Nessie, it’s working.

Nessie : Well, I never! There she is! Our creator!

Judith : OK, stop fighting. I’m sorry. I’ll come back to you soon.

Nessie : Please do. Don’t worry about a thing. Just give us a life.

Alex : And soon.

Judith : I didn’t realise you felt this way. I just have to get my life in order.

Nessie : Oh yes, here we go again… (sigh)

Judith : No really, you’ll be up and going soon. No ifs and buts … it’s a promise …

* * *

Let me explain:

Alex and Nessie are two women from my novel in progress … in fact the progress is so long and so slow that nothing has been written for a couple of years. So there they are, behind my back, having a wee chat about me.

In the book – the book that isn’t yet a book – Alex is Nessie’s daughter-in-law. The other day I opened the file to start re-engaging with the characters in preparation to write again. I suppose that’s what they are referring to in the beginning! It was good to make contact again with them, like bumping into old friends in the supermarket. It’s nice to know they’re still talking to me, even if somewhat grumpily. I love writing and have done so since I was a child.

The anxiety and inner turmoil that Nessie and Alex were referring to makes it a little more complicated than it might be, but for me it’s also just part of it all. And with it comes the procrastination, from that feeling that every problem in the whole world has to be “dealt with” in an overwhelming way – even trivial things can become huge – before I can sit down to indulge in my true bliss – writing. I’m like a cat going round and round in circles, pawing at the furry nest of my desk, before diving into the dream world of my fiction. And that circling or preparation to write has to be unimpeded by phone calls or problems or suddenly remembered forgotten tasks otherwise I’m back in the real world of worry again.

On the other hand, if I can just get down to it, these feelings can be nourishing as well. And when I direct the energy of the anxiety, rather than implode within it, it can be energising rather than enervating.

I guess also the anxiety contributes to my intense interest in people, that tendency to hold back and observe from the outside, to try and understand what makes people tick in a seemingly normal sort of way. This, for me, is vital in creating complex fictional characters. It’s all a matter of curiosity and exploration. I’m quite shy and I’m usually pretty bumbly and inarticulate when it comes to speaking, so writing is my means of expression. When I get my words and grammar mixed up in conversation, people sometimes say, “And you call yourself a writer!” Well, yes, I do. But I don’t call myself a speaker. I’m never asked to speak or read at book festivals, and that suits me!

But anyway … on we go. Anxious or depressed or fluffy and frittery – all these states are just manifestations of who I am, and they all contribute to my particular outlook in life. When I was in my teens I came across this quote by, I think, James Thurber – “Look not backwards in anger nor forwards in fear but around in awareness.” This notion has always been an underlying guiding influence for me. I just have to remember it and everything generally turns out pretty well all right!

His company’s motto is ‘creating clarity from confusion’, and that’s very much the theme of Gareth’s piece here too…

A Bit about Me

Kia Ora, or as they say round my way, ey up!

I’ve been given this great opportunity to write about madness for the ‘out of their minds’ initiative. I’d like to use this space to talk about how I view my own madness and the role it plays in my life.

But first, the essential stats

Name: Gareth Edwards

Origin: Manchester, North of England

Location: Auckland, New Zealand

Favourite Colour: Green

Qualifications: BSc Psychology – Sheffield Hallam University, UK (1996)

MSc Applied Artificial Intelligence – University of Aberdeen, UK (1997)

Bipolar Affective Disorder – National Health Service, UK (1999)

Being Mad
How do you describe what it’s like to be mad?

And I guess that’s where the complexities really begin, because language, with all its wondrous abilities to articulate and express life’s rich tapestry, fails miserably when it comes to describing madness. We’re limited to weak similes, such as:

“it’s a bit like that feeling you get when you’re really sad or happy or nervy etc, only more so”

and impossible requests on the imagination, like

“imagine that when you listen to the radio you really, really believe it’s talking just to you”

Over the years I’ve tried many times to describe to other people in my life and in my work what it’s like to be mad, in the belief that if I could only make that description compelling enough they too would understand what it’s like to be mad. I can’t remember a single success.

To be able to relate an experience, there needs to be an existing degree of shared understanding – I can describe what it’s like to be a British football fan and you may be able to make connections to that description as a New Zealand rugby fan. I can’t do the same with madness – depression is not like sadness “only worse”, mania is not like happiness “only better”, and psychosis is difficult to even articulate let alone translate.

But even if a common connection existed, the language at our disposal would fail us. Language is a tool we use to give shape to and convey ideas and for the vast majority of time these ideas are not our own – we carry around the ideas we’ve learnt from others and the ideas we see around us. Sometimes we mix them up in novel ways, and very rarely someone, somewhere will have a genuine ‘new idea’. But for the most part we regurgitate existing ideas through language.

And therein lays the difficulty – if we need language to shape and convey ideas, how do you go about describing an experience when the language you want doesn’t exist! I could very easily set out a potted ‘medical’ description of my mad experiences – the usual depressed, manic and psychotic symptoms you can find everywhere from pamphlets at the doctors to Wikipedia. Google them, select a handful of each and that would probably provide some terms you’d recognise that are one way of describing the ’symptoms’ of ‘bipolar affective disorder’, but that language doesn’t reflect how I view these experiences. The alternative, ‘non-medical’ language is the even more familiar slang – loony, loopy, nuts, crazy etc – and apart from times of being flippant, they don’t really do the job either. What’s more, these terms are really just euphemisms that demonstrate the paucity of adequate language to describe the mad experience. They also hint at something more sinister – wherever there’s euphemism there’s a culture trying to hide the topics it doesn’t like to discuss – just think of all the slang we have for the entirely natural human activities of defecation and coitus.

There’s another aspect to the mad experience that can be just as complex to describe, though potential connections to shared experience are available. The medical language of diagnosis and symptoms provides a framework for describing the mad experience, even if it isn’t a framework I’d choose to use, but it only relates to some aspects of the internal experience – what it’s like to be mad on the inside. There’s also the external experience of madness – what it’s like to be mad in a world that doesn’t tolerate or accommodate madness very well.

There was a period of time in European history (around the Age of Enlightenment in the 18th Century) when mad people were physically and philosophically removed from society – the new world order was to be founded on ‘reason’ (rather than mysticism and superstition) and the ‘unreasonable’ were not seen as in line with this vision. It is here that the foundations of institutionalisation were laid, and also where doctors began applying ‘modern medicine’ techniques with mad people, setting the scene for the emerging profession and paradigm of psychiatry.

It is in the ramifications and ripples of that initial removal from society that we find the language of social exclusion and inclusion, of human rights and discrimination, and it’s a language we share with other people and peoples who have also been pushed out of the so-called ‘mainstream’ of society and been denied the kind of quality of life ‘we all’ believe people should have. It can still be difficult to describe what it’s like to be an outsider because of your experience of madness, but the experience of being an outsider can be more accessible as it’s one many people have – so much so that the sum-total of people who live on the outside of society far outnumbers those who live on the inside!

My own experience of exclusion has been mitigated by mainstream-aligned demographics – I am white, middle-classed, educated, heterosexual and male and so the odds of successful inclusion into society are stacked in my favour. Tweak any one of these criterion and the odds quickly diminish and can become themselves drivers for compounded exclusion.

So I go back to the original question – how do you describe what it’s like to be mad?

My answer is that I don’t. The only way I could describe it is if you’ve experienced it yourself, and then you’d have your own story to tell…

Mad Work
I never really chose to work in the world of madness. Like most people I know who work here, I drifted in, and much against the run of play.

I spent my first 25 years of life committed to anything but a career in this field – my parents work in this sector and our social occasions were flooded with family friends who were social workers, psychiatric nurses, probation officers, counsellors, addiction clinicians and a myriad of other health and social welfare professionals. Listening to their conversations at birthdays and BBQs I knew I never wanted to be in the position they were in – to have genuine compassion for their fellow human beings and to have to work within systems that appeared to subvert and counteract that compassion. In other words, trying to make a difference in a system that was, at best, indifferent about making a difference. What you might call, pushing shit uphill.

So my drift in was, like many other mad people I know, a drift rooted in recovery. I’d come out of my hospital admission demoralised and dejected and, needing to start back on the work path, took a job as a temporary, casual kitchen hand. The kitchen in question happened to be in an alcohol detoxification unit and after a couple of months I started working as a temporary, casual nursing assistant in the unit itself, and so began my occupational rehabilitation and the start of a career in mental health and addictions.

Importantly, the week before I took the kitchen hand job, I’d nearly been successful in securing a job in an inner-city sandwich shop, but had been turned down because I couldn’t butter the bread fast enough on my work-trial day. I like to think that in an alternative universe there is someone just like me with slightly quicker wrist action who spends his work day designing the latest lunch-time nibbles with nothing more complex to consider than 5-grain over wholemeal or whether a taco-based savoury snack can ever truly be conceptualised as a ’sandwich’!

After drifting in, I pretty much continued to drift and in just over 5 years I had just over 10 different jobs. I worked in units, day centres, and hostels in assistant nursing, psycho-education and keyworker roles. Mid-way through this period I started to draw on my academic background, and I worked in hospitals, universities, foundations and government agencies in research, training, promotion and funding roles. In retrospect I can see that those biannual shifts occurred when my own conviction (and possibly arrogance) that I could make things better came up against a system that was more concerned with bed-nights and budgets, publications and presentations, form over function, perception over introspection. At these points it was like I could hear echoes of my childhood perspective on people in this profession, telling me I’d only got half way up the hill and it still all smelt like shit.

After much cajoling I took my first tentative steps towards self-employment and began contracting and consulting, and it is this I continue to do with my company Positive Thinking.

One of the main motivations for working independently was, and is, the greater opportunities for freedom of speech. Like all industries, there are constraints and occupational norms within the world of madness – the professional hierarchies and paradigms that must be adhered to, the ‘party line’ which it is expected you will align your toe to. One of the challenges I think mad people working in this area face, and it’s compounded when your role is within the more traditional organisations, is that much of what we see and encounter in the world of madness requires critiquing, often quite strongly and from divergent perspectives. What’s more, we as mad people have to bring to bear opinions that are informed by professional qualifications and experience and personal experience.

To put it simplistically, we often know something needs to be done better not just because:

• Our text books and study tells us something needs to be done better or that
• We can identify the need to do something better from our work experience

But also because we know what it’s like for us and people like us to be experiencing this thing that needs to be done better!

It’s not as black and white as I’ve made out – by using the word ‘better’ I have purposefully set this up to be at least partially based on values. To give a personal example, I am no fan of involuntary seclusion – the practice of confining a mad person in isolation against their will, often used when someone is seen as posing a risk to themselves or others. The literature on seclusion can be read both ways, though contemporary thinking consistently challenges its legitimacy on therapeutic and human rights grounds. People who work in places that use seclusion tell me it is often done out of logistical necessity (low staff numbers and restricted space) rather than any treatment preference. And my own experiences of seclusion back this up – it is degrading and punitive and difficult to link in any tangible way to improved mental health or treatment outcomes.

To articulate and advocate on this kind of multi-faceted perspective is difficult – to do so in an occupational environment enshrined in a protective paradigm is difficult and onerous. For most mad people working in this field though this is the challenge they face – compelled to work with complex perspectives in an often stifling work-place where their critique is often minimised as complaints. With hindsight, it was no accident that none of my 10+ job titles had an explicit ‘consumer’ or ’service user’ label – I think my self-preservation instincts steered me away from having to provide a mad voice as part of a system that doesn’t want to listen.

Stepping outside of that system, working from a place of independence has enabled me to find that voice, to feel comfortable in blending the professional and the personal. I like the concept of the le bricoleur – a person who ‘makes creative and resourceful use of whatever materials are to hand, regardless of their original purpose’. As a bricoleur I am now able to make sense of my mad work, and my life experiences – the study, the madness, the jobs and even the birthdays and BBQs – can be used in the work I do.

I’m still pushing, but it smells sweeter.

Egan is also involved within a number of Tangata Whaiora circles on both a local and national level. Tangata Whaiora translates to ‘people seeking wellness’, and is a term that some Maori (and, increasingly, non-Maori) use instead of such phrases as ‘people with experience of mental illness’.

Egan was also featured in the Like Minds Like Mine campaign’s most recent advertisements on Iwi Radio. Here he discusses his own approach to what others might call ‘mental illness’, his vision for mental health services in Aotearoa, and some of his views on the subject of madness more broadly.

So, who are you?

Ko Takitimu, me Mataatua, me Te Arawa nga Waka

Ko Ngati Ranginui, me Ngai Te Rangi, me Te Arawa nga Iwi

Ko Pirirakau, me Ngati Pikiao, me Ngati Whakaue nga Hapu

Ko Poututerangi, me Rakeao nga Marae

Ko Egan Bidois ahau.

E noho ana ahau I Poneke, kei Upper Hutt tou maua ko Helena (toku Hoa Rangatira) kainga.

What drives your involvement in mental health work and rethinking madness?

Same thing that drives us all I’d like to think – we believe in it!

It’s our passion, our calling. It’s the reason perhaps we have experienced what we have experienced in our lives, wellness and unwellness. To have walked it is to also have a good idea how to walk alongside others within it.

What drives me personally?

Tikanga – ensuring that things are done correctly. Done respectfully and done honestly. The moment we stray from the fundamental governances of Tikanga is the moment we are doomed to failure.

I approach the concept and context of Mental Health from a Maori perspective (well, as I see a Maori perspective to be anyway). My perceptions, experience and opinions in regards to Mental Health are somewhat different to the standardised Clinicalised/Hospitalised Europeanised understandings and perspectives of Mental Health/Illness.

At times they are vehemently opposed to them.

I want Tangata Whaiora to be heard. Once heard, listened to. Once listened to, acted upon. Once acted upon, move aside so we can act for ourselves thanks very much.

How do you describe the distressing or mad experiences you’ve had?

Firstly let me get this right out there at the beginning:

I do not see myself as experiencing a Mental Illness.

That in some form may be interpreted as ‘a lack of awareness’.

That interpretation however would be flawed.

I do have awareness. A very good level of awareness. I know myself and what I experience. And that knowledge and experience is merely inconsistent with the generally accepted Clinical/Pathological interpretations of ‘Mental Illnesses’.

What I will however concede is that IF I do not manage what I experience it has the potential to create some ‘unwellness’ within me.

What do I experience? Something that I’ve experienced as a child, something that has matured as I have matured, something that was seeded within me from the beginning – even before me. In some ways I am experiencing inevitability. I am experiencing Whakapapa. I am experiencing what others before me have.

In a nutshell I see things. I hear things. I feel/sense things.

On a daily basis.

Those things could be interpreted as Auditory/Visual/Tactile Hallucinations. They could be interpreted as Delusion. As Psychosis.

The fly in that ointment comes when what I experience ‘checks out’ with other people. Which it does regularly.

What language do you use and why?

Language in regards to Mental Health that I tend to use is Maori/Maori-flavoured. It also tends to be everyday ordinary language.

Why? Well I’m Maori so it’s who I am (even though my grasp of Te Reo is by no means expert, I’m learning). It’s everyday language as Mental Health – in my opinion – is no mystical complicated thing. It happens every day in every way to everyone.

Language can also be power. If the language and discourse surrounding Mental Health is complicated, is MADE complicated then it removes the *power* within it and places it within only those who understand that language.

Many times the language/discourse that particularly Mental Health Clinicians use is so jargon laden. The medical/pathological terms used can be very off-putting for those who do not hold an understanding of what is being spoken about.

To me that can be a barrier to empowerment. To awareness. To finding your own understanding and knowing place. IF you have to first decipher what is being said to you then you can at times already be on the back foot so to speak.

In what ways does your madness – or madness in general – make sense?

It makes sense to me.

I guess in many ways the issues that arise around what I experience are more about issues OTHER people have making sense of it.

Madness in general? Well… each person is of course a unique collection of experiences, of understandings, of whakapapa. As such there are as many understandings and definitions of ‘Madness’ as there are people supposedly experiencing it.

What greater sense of ‘Tino Rangatiratanga’ can someone have than to be able to define what it is they experience. In their own words, in their own way.

I have my own understandings/theories yes – but I’m not about to say “madness is…” As the mana of the sense-making resides within the person making sense of it. No one else.

Does society tend to understand madness or distress on different terms to your own? If so, why do you think this is?

Some don’t seem to understand. Some do. Again understandings are individual – for both the ‘experiencer’ and those they engage with.

For many I speak with they do have some understanding. Why? Maybe because it’s not something that is at all uncommon. It is something that people have been experiencing from year dot.

Many people have family members who have different perceptions of the world around them, who see/hear/sense things deemed ’spiritual’. It’s no new thing at all.

What I do find interesting however is that while many people may experience such things or know people who do – there still seems to be some sort of reluctance to speak openly and freely about it. Either through fear of ridicule or fear of – well – being diagnosed!

For me it is a subject that NEEDS to be out there in the open. If only so experiencers don’t feel abnormal, don’t feel like freaks or anything. So that they can feel ‘normal’ again.

How do you think New Zealanders learn to think about madness?

Interesting question.

The ways are many. Media certainly plays its part. The images we see in Papers, on the TV, in movies, songs and stories. Those all convey a message of what ‘madness’ is and what ‘mad people’ are like.

Face to face contact also conveys a message. It’s certainly personal contact that I’d prefer. That way people can see, hear, feel the person rather than see, hear, feel the image and filtered understanding second/third/fourth-hand.

What I do find interesting is when I encounter quite negative stereotypes and discrimination around ‘madness’… and yet the statistics indicate that no person alive would not know someone who is experiencing it. We/they are your mother, your father, brother, sister, cousin, workmate, neighbour, boss, employee, shopkeeper, taxi driver, doctor, dentist, lawyer or themselves.

So to hold such negative opinion is to demonise ones loved ones or oneself.

What do you want to you add to the mix?

No one disempowers you but yourself.

No one empowers you but yourself.

Ultimately the call for either rests solely within your hands.

(that’s sure to start a heated debate…)

What do you see as the value of your mad or distressing experiences?

What I experience may benefit others.

Sure, we can go down the whole route of ‘it’s made me who I am today, it’s afforded me a level of understanding of others, it’s taught me lessons I take forward in my life blahblahblah’ kind of stuff. I’m not in any way discounting or diminishing the personal growth it’s provided. No way. But I think that one of the wonderfully positive things of what I experience is that through that experience and understanding I may be able to assist other people.

It’s through those painful times that fruit for others can also come.

It’s through those good times that joy for others can also come.

To me the real blessing in these things is the blessing it can offer to others.

Have those experiences made your work better? Or been of value in other areas?

Absolutely. In many ways.

What are some examples?

Well – the old saying of ‘It takes one to know one’ often comes into play.

Often I’ll assist one of our Clinicians who may be having some difficulty making a connection with a Tangata Whaiora.

Most of the locals know me – most will respond more positively towards someone they know is Tangata Whaiora also.

That kinship in a common journey has its benefits.

The other way what I experience has shown some value is the help it can bring other people.

It’s not at all uncommon for friends to call me at weird hours asking for assistance with various *things*. Things that go bump in the night – seeking some understanding or for their whare to be ‘busted’, things to be dealt with or whatever may be required. It’s common to be asked to come and ’sniff out a place’ prior to friends moving into it.

There are also some elements of that within my daily mahi.

There are a lot of myths about how ‘mental illness’ affects people. How do you think experiencing madness has changed you, if at all?

I don’t know if it’s changed me at all.

To me change is merely a temporary status in the ongoing progression of growth.

Every one of us changes, every one of us grows. This continues right up until our last breath on this earth.

So – ask me just before I die if I’ve felt it’s changed me at all. I might be able to answer you then… or not.