Mary O’Hagan: International innovator, thinker and writer in mental health recovery and wellbeing www.maryohagan.comMary’s Book “Madness Made Me”, a Memoir, can be found on Amazon, and at all good book stores.
I’m glad I didn’t know I was going to be the chair of an international network, have a book published in Japanese, advise the United Nations or become a New Zealand mental health commissioner. If I’d told a psychiatrist I was going to do these things they would have upped my anti-psychotics on the spot. They kept pouring accelerant onto my years of despair by telling me I had an ‘ongoing disability’ and needed to ‘lower my horizons’. I’m so glad they were wrong.
As a young woman I experienced severe moodswings and was in and out of psychiatric hospitals for several years. I slowly realised that the people who worked in the mental health system had very little in their toolkits, because they saw me through a reductionist, deficits based and pessimistic lens. I seldom felt understood or helped in the mental health system and I knew people who were deeply harmed by it.
In response to the failures of the mental health system and with a blank CV, I helped to initiate the user/survivor movement inNew Zealandin the mid 1980s. I started locally, by setting up a self-help and advocacy organisation called Psychiatric Survivors inAuckland. Then I went global and became the first chair of the World Network of Users and Survivors of Psychiatry, and an advisor to the United Nations and the World Health Organisation. In 2000 I was appointed as a mental health commissioner inNew Zealand, and since 2007 I’ve been an international consultant in mental health.
Two of the deeper questions underlying my work have been how should we understand the phenomenon we call ‘mental illness’ and how should services and society respond to it. I’ve learnt that these two questions are inevitably linked and that we cannot create genuine change without transforming social and professional attitudes to madness. Unless people see madness as a full human experience, such as a crisis of being that value and meaning can be derived from, their responses to it will continue to marginalise and do harm.
In this interview I make sense of my madness from the inside by reading extracts from the first draft of my memoir. As a young adult with severe mental health problems I had a huge struggle making sense of my experience. The sense other people made of my madness didn’t make a lot of sense to me either. I was exposed to four grand theories about the origins and nature of madness and none of them worked for me.
The biological theory was far too reductionist to help me make sense of such powerful experiences. Some mental health professionals told me I had tipped over the edge because I had psychological deficiencies or there was dysfunction in my family of origin. By and large I didn’t agree with them, which irritated some of them immensely. I didn’t have the usual sociological risk factors; my early life was relatively secure and by the time I had reached the age of 18 I had banished any notions of god or spirits from my universe.
All these grand theories (biological, psychological, sociological and spiritual) have strong causal explanations for madness; they tend to view the causes and the nature of psychosis as overwhelmingly negative, which also didn’t make total sense to me.
In my search to make sense of my madness, I talked with my peers, read mad peoples’ autobiographies, anti-psychiatry, and the literature of the user/survivor movement. These all helped but I still couldn’t really fit my madness into the story of the rest of my life.
Many years later I realised that I was using the wrong tools to try and unlock the meaning in my madness. The use of tools like logic and analysis hadn’t got me far, despite my persistence. Instead, I started to apply the tools of intuition and creativity to the task of finding meaning in my experience and it worked much better.
So today I’m not giving you a robust analysis; I’m giving you an intuitively arranged set of experiences in the form of words, metaphors and images. Most of the words I will speak were originally written during or around my episodes of madness, though they have been reworked to fit a different context. Some of the extracts disclose my raw experience, while others are more reflective. Most of the images are new and were not created by me, with the exception of two drawings I did with cheap Hospital Board crayons in Occupational Therapy.
There are many stories about madness. For mad people the stories are of a powerful experience, for psychiatrists it is a collection of symptoms, and for families it is disturbing behaviour. For the public, the story of madness is enshrined in the dictionary and everyday language; madness is insanity, foolishness,,it’s wild and uncontrollable.
Madness has been described again and again by people who have never experienced it. The mad person’s definition of madness has never made it into the dictionary or into conversation, media stories, literature or mental health discourse.
Our version of madness can even elude us. We lack a validating language to make meaning from it. Our madness stands outside in the dark, knocking on the door to meaning, struggling to get in. My own stories of my madness struggled to take shape while other people’s stories of it took instant inspiration from the dictionary, diagnostic manuals and a wider culture that completely shunned it.
Most of the stories of those who look on, seeing only snatches of madness, portray it as all bad. My story of my madness though, is fuller than the stories of those who looked on. As well as being the most intricate story, it is the only unbroken one, the only story that had a witness present from start to finish and every moment in between. That witness was me.
The first time I go mad I lie in bed for days with my door shut and the curtains drawn. I struggle to put a thought or a sentence together. I can’t talk. I can barely move. My chest burns with a dark smouldering pain, and I rasp with weak, shallow breathing.
This is the completion of my crumbling into a profound nothingness.
I discover with horror that I live in a black box. I have hidden the blackness all my life in the naïve hope that there is a grand purpose to everything. In my folly I have pasted over the walls of the black box with pleasing and colourful decorations – the false window frames with a painted in view of a grand universe, the fake pictures of a life worth living, the pretend painted-in door that leads into a promising future.
Now all the decorations have been torn down, showing the bare black boards behind them. All I have known and valued in my life is a sham – my belief in goodness, my hopes for the future, my affection for family and friends, my curiosity, my laughter. I have lied to myself and the people and the culture around me have lied with me. There is no reason to live, I say over and over to myself.
A WAKING DREAM
One night in my flat I’m spinning again; my thoughts are charging through me at the speed of light. I see the kitchen knives sharpened and winking on the wall magnet above the bench. Now I understand why my flatmates are looking at me strangely; they are planning to kill me with the knives. I run away in terror through the cold dark streets. My flatmate catches up with me, puffing, pleading with me to stop. He sticks his arms into the air and tells me to feel him for knives. I can’t find any. He calms me down and walks me to the hospital.
The emergency nurse puts me into a room and shuts the door. I spin around. Everything is infused with holiness. Even the chrome and the white formica glow from within. I am getting lighter and I feel my feet starting to leave the floor. It is revealed to me that I am the Virgin Mary ascending into heaven. At that moment the psychiatrist comes and I bolt from the room until a security guard catches me. The psychiatrist sends me to the mental hospital in an ambulance which winds through the dark country roads like a shining beacon, while I prepare for my ascension through the metal roof, up into the endless night sky.
The next morning I wake in the mental hospital with the sunlight shooting and splintering through the windows, as evil and deadly as a nuke. I jump over the patches of white light on the floor and head for the shadows in my light blue dressing gown. If I step onto the white patches I will be blown to bits. As I weave through the shadows I grab a nurse by the arm. ‘The sun is trying to kill me. My madness is trying to kill me. What’s going to happen to me? Will I keep going mad? It’s going to destroy my life’.
My friend is driving me through the bursting yellow hills ofMarlborough. The colours are too rich, the trees too sacred, everything too infused with godliness. Looking at the world is like looking straight into the eye of the sun.
I lower my eyes and see an orange glowing on the car seat beside me. Picking it up with reverence, I hold it out in front of me. ‘The whole cosmos is beating inside this orange. I have never ever seen anything so sacred,’ I say to my friend. I cut up the orange with a pocket knife. Its insides glisten and the precious juice falls onto our fingers as we eat it.
Then I listen to Mozart’s Flute and Harp Concertos on a walkman. The music makes me dizzy with delight; it surges into the core of my being and bounces off the hills into the bright blue sky. It is so unbearably beautiful, so powerful, I can feel it almost carry me through the air.
I wake in the middle of the night, jerking with the feeling of electric shocks going through me, every time I have a thought. I can feel my tender burning guts smoulder inside my gasping caged chest. Everything hurts. I am burning. All the life in me blazing out from the core of me is getting stuck. I can feel it trying to burn through my skin. I am almost on fire.
The presence of other people burns into me too. Their gazes beat down on me, like the hot, hot sun on a desert. I start to wither when they came near, so I lie curled up in my bed to shield myself from the jabbing gaze of the world. In the morning, the night nurses pull off my blankets; they’re rough and I can’t fight them back. I feel so vulnerable. Even the air could hurt me.
Lying curled up on my bed, the burning gets so bad I become a long piercing scream, all screaming on the inside of me and out of the pores of my skin. My screaming and my self are one. This is pure pain. I cannot bear being alive.
I am stuck in this twilight mood where I go down like the setting sun into a lonely black hole where there is room for only one.
A few days later in occupational therapy I draw a picture of me standing inside a glass bubble that seals me off from the world. The bubble is in night and the world is in day; I can see the world from a distance but the world cannot see me. I have no hands or feet or face, and my body is faint except for the black void of my lost self in my chest. A red umbilical cord lies broken at the bottom of the bubble. There is a rainbow behind the bubble but I can’t see it. Madness severs me cleanly like a meat cleaver. It severs me from my self. It severs me from my world. Sometimes the severing is too painful for words.
THE LOST SELF
I have lost my self. What is my name? I have no name. All I am is shape and weight, rapid shallow breathing, and a black space inside my head.
Later, I write that a sense of self is not an emotion or a thought or a sensation. My self is the solid core of my being. It is like an immutable dark sun that sits at the centre of things while all my fickle feelings, thoughts and sensations orbit around it. But my self goes into hiding during madness. Sometimes it slides into the great nothingness like a setting sun. Sometimes it gets trampled in the dust by all the whizzing in my body and mind.
But my self always comes back as strong as ever after my madness subsides; it reoccupies the core of me with its warm dark aura. Madness does not just extinguish me, it also renews me.
I discover this one day when I watch my flatmate weed and dig the vegetable garden. It had been lying fallow for a year. She came up to me and said ‘The soil’s good, it’s had a break’. Then I realise my madness is like the soil lying fallow. Sometimes my madness strips me bare but it is also the beginning of renewal; every time I emerge from it I feel fresh and ready to start again.
THE HEROIC JOURNEY
As a child I read Ladybird books about Boadicea and Joan of Arc, brave kings and fearless missionaries. I watched ‘The Lone Ranger’ and ‘Flash Gordon’ on television and longed to be a hero like them – facing adversity, conquering evil and saving the innocent. In my mind I made up stories about saving my class mates from the burning school, running through the flames, dragging them out into the sun choking, while the nuns cheered me on. I made up other stories of saving people; the kind old priest collapsing on the far side of the school paddock with a heart attack. I ran over to him and breathed air into his mouth until he woke spluttering and full of wonder that I had saved his life. All my heroic dreams, games and stories gave me a template for my fall into madness, my relentless struggle with it and my eventual return from it.
When I went to the mental hospital for the first time I thought the nurses and psychiatrists would regard me with respect and a poetic sensitivity for my desperate crisis of being and my heroic struggle to get through it. Though I appeared schizoid and directionless to them I thought they understood that I was fighting the collapse of my self and everything I valued. I was fighting for my life. There is no shortage of myths and legends about people in my kind of predicament – St George and the dragon, forty days in the wilderness, the despair of Job, survival in the trenches. But the psychiatrist and nurses didn’t see me or anyone else in the hospital, reflected in these stories. All they saw was a sick, deluded, screwed up 21 year old who needed their control and containment.
A MINORITY EXPERIENCE
I was told again and again that I had a serious problem that needed to be eliminated with expert help. But after a time, I started to think that my mood swings were not an illness, but a strange and inexplicable minority experience that had been captured, impounded and colonised by the psychocratic regulation of reality. Like colonised indigenous people, I had been denied what is truly mine. The psychocrats with their monopoly on knowledge and power had alienated me from my mood experience. There was no meaning in my madness; it stood outside in the dark, unable to be integrated with my ordinary, socially approved self.
How different my moodswings would have been if they were judged to be a talent rather than an illness. Or if 99% of the population had extreme moodswings instead of the 1% that do now? Society would be organised around this vast ‘normal’ labile majority. Perhaps people would even be socialised into experiencing and channelling their moodswings in acceptable ways as other universal attributes like sexuality are. And for the small stable minority maybe there would be a diagnostic category called Mood Inlability Disorder (MID) – ‘Patient is incapable of experiencing the full range of normal adult moods’.
A FRIEND IN MADNESS
After several years I began to think I shouldn’t fight my madness any more. I could see that it had won again and again. Living against my madness wasn’t working. So I tried to find ways to live with it. How could I live a good life and still have periods of madness? Could I change the experience of my madness so that it was not so disabling or distressing? Would my madness recede if I tried some new ways to make some good things happen to me? No-one else had any answers to these questions and I struggled with them on my own.
I had been in a boxing ring with my madness. My opponent kept knocking me down. I kept getting up and slugging it out, trying different tactics, trying to duck the punches, trying to believe I could win, only to be knocked down again.
In most respects being under the negative, deterministic and dehumanising spectre of `mental illness’ was a monumental barrier to my recovery. To break through this barrier I needed to find a place for my madness, instead of allowing psychiatrists their futile attempts to get rid of it. I needed to know that I could have a good life whether I continued to go mad or not. But there was a cruel, unrelenting determinism about mental illness as it was portrayed to me by psychiatrists.
My madness was like a boarder coming to live in my house, who turned out to be a citizen from an enemy country. Knowing I might not get rid of him meant I had to make peace with him and learn to understand his language. Once I got to know the boarder, he was no longer the stereotypical enemy, but a complex character that deserved some respect.
FINDING CLUB MAD
My madness was one of the most profound experiences I’d had. It was as intense as falling in love, a religious revelation or overwhelming grief. I didn’t want to romanticise madness but I knew it deserved the same status and respect as any other powerful human experience.
What did it mean when the world was too beautiful for me to look at? What did it mean to be inside the black box? What did it mean that I lived in such extreme zones of existence? Nobody really knew or cared. Except me. Mostly, it meant terrible suffering and my desperate struggle to find a place in the world.
At first it meant wandering around the crumbling edges of human experience like a lost explorer. But over the years I met many fine people who were mad like me. I learnt that our madness had taken us to a foreign land where only mad people could go to. Some of us stayed in this mad land for a long time while others of us got out and kept returning to it. Mental health professionals stood at the border trying to pull people out of the mad land, even the ones that wanted to stay. They knew the mad land as a bad place where people got lost, sometimes forever. But most of them had never been there.
My peers helped to show me that I was not the lone lost explorer I thought I was. The mad land, for all its perils, had some of the most enchanting scenery in the world. Like a land that has mountains and ravines, rivers and caves, blinding sun and swirling storms, the mad land could be a place of beauty as well as danger. My peers helped me to understand that there was a whole tribe of us who had been there and seen many of the same things. Things other people did not understand.
Many people reach the border of the mad land at some time in their lives. Most manage to skirt their way around the edge of it and look on with dread at a distance. But those who go right into its belly come out with richer pictures of a being that has been lost and found again. The tragedy is that no-one wants these pictures. Like the paintings of some abstract artists, people look at these pictures and think they could have been done by a child of three.
My own pictures of madness came in the form of words and metaphors. At their most powerful, my words floated in from the blackness and passed through me onto paper. I made meaning, not in spite of my madness, but because of it. It was not the kind of meaning that answered ambitious intellectual questions such as ‘why?’ Like haunting music or poetry, it was a meaning saturated with soul, an intuitive expression of being without the labour of logic.
One of the last times I went mad I lay on my hospital bed with my eyes shut and my thoughts started sliding off into nonsense. This terrified me so I tried to make some sense of things by taking bits out of nonsense and putting them into a sequence:
An old woman and her grand-daughter lived by a great ocean. Every day the old woman went fishing. She yelled in awe to the ocean, ‘Let me take the life out of you with my net.’ She always returned with fish and cooked them for herself and her grand-daughter. One day she gave some of the fish to her grand-daughter and said, ‘Cook these for yourself’. The girl wailed, ‘I can’t’. The old woman replied, ‘You must find your own power’. But the girl didn’t understand and went to bed hungry.
That night the girl woke from her dreams to a booming voice from the sky: ‘You have the power of the old woman and the great ocean flowing into the core of you. Now, take meaning from the rawness of life and cook it for yourself without fear’.
At first I just repeated the words over and over to myself to ward off the chaos. Later I realised the words had arranged themselves into a story, a story that was telling me I didn’t have to go mad any more.
The conventional wisdom says madness and sanity can never meet over the great wall that separates them. But I have experienced both and they bleed into each other like water into wine. My madness and my sanity are not two parallel stories; they are one story in two dimensions. Madness and sanity are not two different garments; they are the warp and weft of the same fabric.
Sanity is the container madness sits in; they are made for each other like a cup is made to hold drink. Sanity stops madness from spilling everywhere. Madness stops sanity from confining us to the tyranny of the ordinary.
Madness and sanity hide away in the great blackness beyond the horizon of certain knowledge. People seek to understand them with the puny power of their minds, like tiny searchlights slashing the night sky.
For a second they see a narrow strip of the origins or nature of madness and sanity. Then they fall to the temptation of believing their strips of understanding are very big truths.
I have waved my own searchlight in the great blackness seeking some clues to my madness. I have tacked my strips of understanding into the montage of stories I have just told. It is a work in progress, with many black spaces left to fill.