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Last Updated: Monday, 29 September 2014 22:45

Published: Tuesday, 06 July 2004 22:00

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The following article was given by Karla Mila-Schaaf at the Building Bridges Conference and is reproduced here with her permission.

In order to be heard, and for stories to be successful, it depends on there being a community who can hear them (see Plummer, 1995). Stories and narratives depend upon communities that can create the conditions for them to be heard. So I thank you for being that audience, for being that community of support, who is ready and waiting to receive this story. There are some stories which may have been waiting in the wings, for their time, for their voice, and for their audience. This is one of those stories. It’s not the easiest story to tell.

For the longest time I’ve had my back to this story. As if it was my own sun. You know what they say: “Never look directly into the sun, or you might go blind.” It is the kind of sun that makes people blink awkwardly. Light aches in their eyes and you’d wish for a cloud, any cloud. They are not the easiest stories to tell, or to hear, and perhaps more than anything, they are not the easiest stories to create spaces for, to create spaces for both the telling and the listening.

I acknowledge the work of so many of you out there, who work everyday (many of you) to create the conditions for these stories to be heard with dignity; who clear the spaces for these healing and burning stories to be told.  

I want to acknowledge Maria Glanville, Vito Nonumalo, Seiuli Papali’i Johnny Siosi, and Tuiloma Lina Samu who have all come before me, telling their stories and who are all committed to clearing the space and clearing the path, so that such stories can be told and heard.

The lens of pathology tends to have the monopoly on the way we view mental health illnesses and experiences. And then, sadly, our experiences are framed within the tiny, pigeon-hole boxes and classifications of the DSM. Our complicated, messy life histories and twisting personal plots are squeezed into the narrow parameters of diagnoses. This doesn’t leave much room for other, longer, more complex, shimmering and sometimes uncontainable, stories to be told.

Silence can be so much easier. Putting things behind you and moving on without looking back. It’s so much easier.

But it isn’t all that honest. And it means for others, tragically, who find themselves in that darkness, or in that bright blinding light, or in that void, that there are few telltale signs left behind to say, other people have been here before you and they have lived to tell the tale.

I am mindful, that there are very few crumb trails left behind in those forests, those dark thickets that we find ourselves in. There are few clues, few maps; few compasses left behind. So that if you do find yourself in that frightening terrain, there is often little hope. The last thing you feel is that someone else, someone wise, someone wonderful, someone brave, someone beautiful, has been here before me.

There are so few signposts, clues, crumbs, that show that - not only has someone smart been here before you - but that survivor, that person has left a crumb trail behind, to lead you, to reassure you, to remind you, that there is a way out.

I am not suggesting that there is the only the one same pathway out for everyone, because most certainly there was not only one pathway in. I remember when I was in the psychiatric ward, and the people I met there. They were not simply naturally madder, crazier, more insane, stranger or odder, than you or I.

They were ordinary people. They were people who had been put under extra-ordinary pressure, and then they’d been pushed, way past what they could cope with. And their stress and secrets, and problems and anxiety had stretched beyond not only what their personal resources could cope with, but beyond the resources of their families and friends and networks.

And for the most part, the people I met in the ward were not people with a lot of money, or with a lot of resources who could take time out at their bach, or go on extended holidays. And often, within their own family or networks lay the source of their suffering.

One woman I met who was depressed and suicidal was missing an eye. She had lost this eye because her husband had beaten her up so badly and she had been the victim of such severe ongoing domestic violence; that she was missing an eye.

Another girl I met, who was anorexic and severely depressed, had confronted her father about molesting her, and then had been cut off by her entire family who all disbelieved her.

Another girl I met in the ward was only fourteen or fifteen and she already had a baby, had been abandoned by her partner, and was struggling to love this child; that required so much more than she felt she had to give. A child herself, facing really difficult circumstances and it was no wonder that she couldn’t cope with it all.

So many people there had really sad and tragic and difficult, painful stories. In some ways I wondered how anyone could have lived through those experiences and not reacted and responded with losing their appetite for life, wanting to shrink out of existence, giving in wholeheartedly to despair, or finding it difficult to deal with reality. Their suffering, their breaking down, seemed the most natural response to the events that had happened in their lives. It was not that they were in denial or delusion, they were responding acutely and in a slightly out of control way, to the real pain that had presented. I wonder whose chemical make-up really could have coped with what life had dished up and forced them to face, without some kind of revolt, some kind of blip, some kind of backlash, some kind of dysfunction?

In just the way your body feels pain when you’ve hurt yourself, so that you are warned, and so that you can pause, stop, take care of it and heal, it made sense to me that this was also some kind of painful reaction, some kind of shut-down, some kind of blow-out, that would also warn you that something was wrong, and it was time now, whether you liked or not, to ride the dangerous back of the blow-out, feel the immensity of the pain, to wallow in absolute hopelessness, and inevitably at some point, hopefully, arrive at a period of healing.

Recent research by the psychiatrist Andy Thomson and Paul Andrews, an evolutionary psychologist, is pushing the rather radical idea that depressive disorders and rumination, chewing over the same problem, fixating, and extended negative moods may exist “for the specific purpose of effectively analyzing the complex life problem that triggered the depression.”

Depression, then, could be reframed as the most perfect human body/mind/spirit reaction to stress and trauma. The endless ruminations may be present so that we are in a position (often found in isolation) where we may be more likely to solve our most challenging predicaments and circumstances. Maybe. One of their studies showed that the mere presence of a challenging problem — even an abstract puzzle — induced a kind of attentive trance, which led to feelings of sadness. They concluded, “It doesn’t matter if we’re working on a mathematical equation or working through a broken heart: the anatomy of focus is inseparable from the anatomy of melancholy.”

Joe Forgas, a social psychologist at the University of New South Wales, has repeatedly demonstrated in experiments that negative moods lead to better decisions in complex situations.

The reason, Forgas suggests, is rooted in the intertwined nature of mood and cognition: sadness promotes “information-processing strategies best suited to dealing with more-demanding situations.”  This new research on negative moods suggests that sadness comes with its own set of benefits and that even our most unpleasant feelings serve an important purpose; as Alice Walker writes: “We were not meant to suffer so much and to learn nothing.”

It was Keats who wrote, “Do you not see how necessary a world of pains and troubles is, to school an intelligence, and make it a soul?” You know, I would resist glamourising mental illness. It is pretty far from sexy. And I am the last person who would want to recommend an experience of suffering, depression or mental illness. But it seems to me that there is vast amount of space in between the two poles of wilfully romanticising and glamorising what indeed are often annihilating life experiences and completely burying them in shame.

I think of Kay Redfield Jamieson’s phrase, in order to conquer our beasts we must first make them beautiful, which is a Chinese proverb. What if Kay Redfield Jamieson, a psychologist, who refused medication for her bipolar disorder had not been brave enough to put language to this choice. What if she had not articulated this in the following way? She writes:

"I long ago abandoned the notion of a life without storms, or a world without dry and killing seasons. Life is too complicated, too constantly changing, to be anything but what it is. And I am, by nature, too mercurial to be anything but deeply wary of the grave unnaturalness involved in any attempt to exert too much control over essentially uncontrollable forces. There will always be propelling, disturbing elements, and they will be there until, as Lowell put it, the watch is taken from the wrist. It is, at the end of the day, the individual moments of restlessness, of bleakness, of strong persuasions and maddened enthusiasms, that inform one's life, changes the nature and direction of one's work, and gives final meaning and color to one's loves and friendships."

If Redfield-Jamieson allowed someone else to tell her story for her, in the blunt words allowed by the discourse provided by the mental health sector, she could have had her story summed up in one brilliant, silencing word: Noncompliant.

I too went through a battle to be taken off my medication many years ago. And it was not easy. In the end the psychiatrist I was seeing fairly much washed her hands of me. I was not at all supported to make a transition from the diagnosis that storied me to choose language of recovery. I was stuck in the story surrounding “schizo-affective disorder”.

When it was clear at some point, after much olanzipine and risperadol, and prozac, and epilum as well as lithium had been swallowed, after going it solo, without medication against their wishes, and once they realised too, that I was way too well to have the schizo-affective label stick convincingly, I was downgraded to “bipolar disorder”. This meant I was “allowed” to drop the expensive anti-psychotics and just have the epilum / prozac cocktail. But I was noncompliant.

When even this diagnosis had to be downgraded to severe depression that once had psychotic features, to finally, I don’t really think there is anything wrong with you, (of course with the caveat of “right now” I don’t think there is anything wrong with you “right now”. With every downgrading and change of diagnostic story that happened over the years, I felt each of these keenly as small victories; as incredibly hard-won.

But you know, now I look back and think about the way the psychiatrists got to change their story so that I fitted in. And by doing this, no one else who gets the schizo-affective disorder diagnosis can win. Because there is still no recovery, there is just a change of diagnosis. And it is quite a slight of hand, on behalf of the clinicians. They are never wrong. No one gets better from schizo-affective disorder, or rather your prognosis is not good.

And what do I tell the girl who I know, who comes up to me, tearfully, after I have talked about this openly saying that her boyfriend has been diagnosed with schizoaffective disorder.

Do I say, oh, yes, I had that once, but I got better, people do get better actually, don’t believe what they say?

Or do I say, I had that for a few years, but it was a misdiagnosis, sorry.

Do I say, once I had some symptoms that seemed to correlate with schizo-affective disorder but it didn’t really work out…

It is perhaps most honest to say, that’s what they thought I had for a long time. I got better.

This diagnosis is so often presented as a story of no-return. I remember how I was told, and it was my third really serious episode, my second with “psychotic features” and the psychiatrist I was seeing, said to me, he said:

“You have a very serious illness. It is very, very serious and you will be taking drugs for this illness for the rest of your life. I know that people may have said to you, that this is just like breaking a leg. Well, if we are using that analogy, then this is just like you are in a wheelchair. Do you understand? You are a paraplegic. You will be a paraplegic for life and you will be taking medication for the rest of your days“.

The thing is that this was not the case. I have been medication free now for ten years. Since that diagnosis, I have worked as a librarian, as a Trade Union organiser, as a Manager, Pacific Health Research, at the Health Research Council of New Zealand. I have published two books of poetry, one award winning. I have almost completed a PhD thesis (I’ve passed my oral exams). I have been the managing director of my own small consultancy writing about policy and research relating to Pacific peoples for UNESCO, the Ministry of Health, the Ministry of Education, the Ministry of Pacific Island Affairs, the Ministry of Women’s Affairs, DHBs, ACC, even for a Parliamentary Select Committee. I write a fortnightly column for the Dom-Post. I am an active, busy, participating member of Aotearoa / New Zealand and the South Pacific. Today, even as I speak, I gave up a spot on a panel today, at this very moment, to discuss New Zealand’s relationship with, and media attitudes towards the Pacific on a television show. I have written poems, Op-Ed columns, academic journal articles, policy papers, strategic plans, short stories, book chapters, literature reviews, blogs, occasional papers, discussion documents, I have taken part in public debates, in conference discussions, on panels, in keynotes, I have performed poetry, been part of poetry collectives, in short my mind, my heart, my spirit, my intellect, has been very active and productive. It has not spent the last ten years medicated in a metaphorical wheelchair.

Even though, I was told most definitively, by an expert, by a psychiatrist, that this was my fate. I’m going to turn now to a short documentary that tells you my story perhaps much more eloquently than I can.

(I played the DVD of the Tangata Pasifika programme doco about me)

http://tvnz.co.nz/view/video_popup_windows_skin/2564331

If I was to describe what happened to me with the most dignity I can muster, I would say that I experienced and a survived a serious and severe epistemological and ontological crisis. The nature of what was real, and why I believed it to be real, was seriously, seriously challenged. Nothing appeared as it seemed. Nothing made sense using the criteria I’d relied on all my life.

How do you explain why voices are talking to you from under the floor? How do you make sense of dreaming in ways so real that it does not feel like a dream, that you are being burned or hung in front of a large, maddened crowd, in Mala’ekula every night? (Mala’e kula is the Tongan royal burial ground). How do you explain having the voices of your friends and enemies in your head, saying things louder and clearer than anything else around you? How do you make explain the fact that you can hear the pigs and farmyard animals around your house in Tonga talking to you in ways that you understand? How do you explain people’s faces contorting and shape-shifting into other things? The Maori psychiatric nurse, for example, who shakes his head and he turns into a ruru, an owl, right in front of you? None of this makes any sense according to anything you have ever known or understood to be true. When you see your grandmother kneeling on a tapa, greeting the sun and you run out of your house to see her, forgetting that she is dead, and wondering, when you run outside and see no one, you’re wondering, what is happening to you?

My sister told me that someone she knew was hearing voices and she didn’t know how to deal with it, or her. What was the best way to react, she asked me. I said to her, “Don’t tell her the voices are not real”. It’s not helpful. It never helped me. The voices were there. I could hear them. Being told that I was delusional was not helpful. It just undermined the truth of my own experience. “Tell her that that sounds very frightening,” I said. “Tell her, that if that was you, you’d be freaked and frightened and that she is being very brave, dealing with this, because it must be impossibly frightening to deal with.” I said to her, “Affirm her bravery and courage and agency in what must be one of the most difficult and frightening experiences she has ever had to confront.”

You know, I can’t think of any worse response to facing this kind of incredibly frightening situation and then being at the height of this vulnerability, the most vulnerable and frightened you will ever be in your life, being slammed with a diagnosis that then cages you and captures you and pins you to the ground, saying thou shalt never move from this spot again, you will never recover from this, and you are now doomed with a diagnosis that you will never escape from, or recover from, go to jail, do not pass go, you will never be normal again.

Because this is what we do to people who experience psychosis, who see things they shouldn’t be seeing and hear things they shouldn’t be hearing. We give them some kind of schizo diagnosis, to separate them out from the rest of us, and we leave them on the other side of that bridge.

Someone recently pointed out that while madness has been deconstructed to death, “sane” was comparatively untouched and quite an empty concept. What does ‘sane’ mean? When you start to think about it, the notion of sane is quite problematic. Does it mean functional? Functional enough to work and earn a living? Functional enough to participate in society? How does sane operate, in relation to mad? How does that binary work?

One could suggest that perhaps the sane / mad dichotomy, like all other dichotomies is problematic. Those of us who cross over and who can “pass” are even more problematic. I still remember when I was in the ward, and we were let out to play a game of indoor netball with another group of people in residential care, MASH. It was probably the most memorable game of indoor netball of my life, the goal shooter with one eye, the odd ways the ball was thrown, all so out of kink with the way netball might usually be played, but wonderful. And there was a guy, who was the MASH worker on the other team. And he was a guy I’d known from university and worse, a guy who’d kind of had a crush on me. And he came up to me, and was like, “oh wow, Karlo, I didn’t know you worked for Manawaroa.” And I was like, “Ah, no, I don’t work for Manawaroa, I’m a patient.” And then there was just this incredibly awkward silence, like you can’t even imagine! I still laugh thinking about it. So even when I was sick, at times, I “passed” for sane…

And we make so much of this divide: this official divide that keeps them on that side and us on this side. That means that some people get to hold the keys and others are on the other side of that lock.

Many years ago, I was at a health conference and a speaker from Alaska was talking about how unhelpful the clinical line of “diabetes” was. He suggested that to some degree, it was arbitrary, and unhelpful. All of us have blood sugar issues, he suggested. All of us have weight, diet and exercise needs to consider. He found in his practice, as a physician, the clinical line that is crossed due to blood sugar levels and so on, to mark what is diabetes and what is not, is unhelpful.

I am not suggesting that we do away, radically, with diagnoses. But I think it is worth thinking about what we are “building bridges” over. And to what extent it is an artificial divide between humans, which necessarily marks some as sane, and some as insane.

And I wonder about this notion of recovery, that you can somehow, from the other side, dark side of the moon, the crazy side, cross back into the land of the healthy and sane and living, and be “re-covered”, back in exactly the same spot, lifted like Lazarus back to life, back to that same exact point. I wonder whether this doesn’t do a huge disservice to the experience, to the brave adventurous journeys required, and the fact that if you do pass through all the tests, and the dark nights, and the loneliness, and the mental fights, and if you do have the tenacity to work it out, to move through it, to heal, that to suggest that this is merely recovering your former position, does a huge disservice to what you learn through that period.

In fact, it strips the process of any kind of learning, because to recover and let’s use that absolutely tragic and impossibly broken and bullshit metaphor of it’s just like a “broken leg”… It was broken, now it’s repaired, you can walk on it again like normal, there may be a bit of a limp or a bit of discomfort, but you can do everything the way you did before. This is not at all an adequate metaphor to describe the healing process involved in what is defined as mental illness. You will never be the same person again. You will never recover that same self. And this is a good thing, because we were not, in Alice Walker’s words, meant to suffer so much and to learn nothing.

What strikes me is that after this experience, of being crazy, whatever you want to call it, I haven’t got the greatest repertoire of words available to me, that have much dignity to describe it, but after this experience, I cannot see the muttering, mad person on the street, or the clearly psychotic young girl talking loudly to herself, chattering, frightened and bordering on hysterical in the coffee shop, I cannot see the man with wild eyes walking on the streets of Tonga, muttering about dragons, and not see myself in them.

I know that the standard reaction is to reject them, to push them away, on the other side of the bridge, to distance, to disassociate and feel that I am nothing like them, but in fact, now I react with a knowing compassion that this experience is a part of our humanity and in that mad girl, is me. In that muttering man, is me. And if we need to build bridges, it is only towards ourselves, towards our own sense of flawed and fragile humanity.

It took a long time to convince me that speaking about my own experiences or relegating them from the darkness and shame, I had cloaked them in would be of any benefit. I associated my (very serious) mental health run-ins with embarrassment and shame. I am a fairly open and honest person but this was personal, private, quiet, silenced, forgotten, wilfully forgotten, the chapter of life that you glue together for only those special people, those gifted people, to prize open, leaf by leaf. It was never for public consumption or scrutiny.

The leaves of the pages are glued with your own tears. To try and open those pages means the danger of ripping something vital. It means you alter the text, the story of yourself that you like to be told, the best story that you choose to let people see. It means you choose a complicated and possibly conflicting story, one with big loopy bumps in it, one with ghosts in it, one (sadly) with talking animals in it.

It is really hard to tell those kind of those stories when it is not fiction. And yet, fiction, metaphor, poetry, for me at least, has offered a way, a way to speak the unspeakable. And Audre Lorde writes: “Poetry is not a luxury. It is a vital necessity of our existence. It forms the quality of the light within which we predicate our hopes and dreams toward survival and change, first made into language, then into idea, then into more tangible action. Poetry is the way we help give name to the nameless so it can be thought. The farthest horizons of our hopes and fears are cobbled by our poems carved from the rock experiences of our daily lives. It is a way of speaking the unspeakable, putting language to what cannot be said or sometimes, even thought out loud.

As they become known to, and accepted by us, our feelings and the honest exploration of them become sanctuaries and spawning grounds for the most radical and daring of ideas… We can train ourselves to respect our feelings and to transpose them into a language so they can be shared. And where that language does not yet exist, it is our poetry which helps to fashion it.”

It is a long quote but a beautiful one. Last year I was granted a creative media award by the Mental Health Commission and Like Minds to start to write a novel of poetry and prose about my own lived experiences. This meant building my own bridge back to a part of life that I had buried. These pages, had already been written of course, in my past, but I had shut the book on them, left them unarticulated, had chosen instead a “safer” best story.

But I could not ignore, how the stories and writing that have meant so much to me, over the years, were not the “self consciously best” ones which left the troubles out, that disowned them, hid them, in sometimes quite deceptive ways, out of sight.

Those smooth stories always seemed dangerously unbelievable to me, too slick, even now, when I see people projecting those stories I wonder what kind of untamed beasts lurk beneath, what might happen to them if they were forced to look these creatures in the face. It frightens me. I would prefer to make my own beasts beautiful, to comb the hair of that girl who believed that if the knots in her hair were not brushed out, she might die. I remember her.

It was the writing and poems and stories that showed that the pages of the author’s life were not whitewashed and smooth, that these pages were not free from trouble, see right here, the rip, let me share it with you, let me show you where everything went wrong, horribly wrong, but then I kept on writing, I kept on writing myself, to find an ending that I might be brave enough to share. This for me is the process of building bridges, between self and other, between that self and this self, between us all.

Let me share one of those poems:

To the Underworld and back again
I
know
the underworld.

Have seen its forked paths
in my palm.

Night after night
burned at a dreaming stake
in the smoking centre of Mala’ekula sky

Lost
I was lost
in Pulotu
speaking only
English in a dumb tongue

seeing only hurricane
in daylight hours

body morphing
in a rainbow shower
from birth to old age
in one dappled
downpour

Pulotu.

King
underground
baritone beneath the earth
words, quiet crumbs on a hushed path

Queen
her white birds at my walls
resting on branches
of deathbed

A commoner with no soul

uihi oiled to my mortal body
lautolu spread in my human bed
leaves reaching out and pulling me back

from the black
stoned
trail of no return.

This is was the very last thing I wanted to talk about, this was a draft sequence about some of what happened to me. While I am trying to put it into the words of a novel, it speaks most forcefully through the language of poetry.

I refer to a sequence, that I dreamed over and over, or perhaps to use medical language, I refer to a psychotic episode that I hallucinated as real, over and over, that of being caught between a King (reassuring) and a Queen (angry, protecting, with her flock of white doves). Many years later, as I try and recall these dreamscapes, so frightening to me at the time, the angry Queen, the baritone voiced King reassuring me… I find, well, I learn that my own ancestress, my great grandfather’s sister, bore a child, illicitly and obviously out of wedlock, to Tungi, the Prince Regent and Queen Salote’s husband.

I have no way of making any sense of this if I apply a medical or even a common sense epistemology, I can only speak it with any dignity in poetry, even to try and write it in prose sounds weird and far-fetched. It is indeed beyond my understanding.

But, and I suppose everything I am trying to say is summed up in this, I would rather be an ignorant, blind, unreliable protagonist of my own story, with a shimmering underbelly of questionable epistemological grounding, than have my story be told by a psychiatrist, using the cruel sharp language of the clinical, which reduces everything I experienced into something which is neither an adequate representation, nor a generous one, nor truth.

To close, finally, this journey is unique for everyone, the most important things I want to flag for you are:

• We need to think about the language we are using and realise that much of the language we have at our disposal is inadequate; it fixes the person, and their fluid life experience and puts them into a cage, that often bruises them and limits them;
• We need to step back and acknowledge the courage that it takes to move through an experience like that; it’s not just about recovery it’s about transformation;
• For many of us, who only find disempowering, limiting, stigmatizing options from within the mental health sector and the medical model, the inadequacy of language to story our lives means that we have no options but to try and create a new language, a new way of speaking our experiences, free from those terms, the dichotomies that trap us.
• There is a real loss of power that comes from a process of erasure as an equal human, and then the process of over-inscription with diagnoses and other peoples ideas about what is possible for us, such limiting ideas that mean we find it hard to give voice to the void, to tell our own life stories with any dignity.
• While there may be few empowering options left to us, and not much empowering language, I personally have never been let down by the power of being brave enough to author my own story.

I leave you in the words of Ralph Waldo Emerson who said: “Do not go where the path may lead, go instead where there is no path and leave a trail.