It was my desire to reduce the fear and sense of isolation associated with diagnosis, increase awareness and reduce stigma sur



Yüklə 1,51 Mb.
səhifə9/31
tarix12.01.2019
ölçüsü1,51 Mb.
#96405
1   ...   5   6   7   8   9   10   11   12   ...   31

Sandy’s Story


Schizophrenia: A Journey into the Dark Wood
If I were to think of my life’s journey, like many of us it resonates with Dante’s words that begin his journey down into the festering interior of The Inferno. Dante tells us:
Midway along the journey of our life

I woke to find myself in a dark wood,

for I had wandered off from the straight path.
How hard it is to tell what it was like,

this wood of wilderness savage and stubborn

(the thought of it brings back all my old fears),
a bitter place! Death could scarce be bitterer.

But if I would show the good that came of it

I must talk about things other than the good.
I have issues that have driven my life, demons to exorcise, but if I would show the good that came of it, / I must talk about things other than the good. Unlike Dante, whose guide through the Inferno was the poet Virgil; my guides have been the various people who, over the years, have either knowingly or unknowingly given me the strength to go on when all seemed lost. In my adult years, I have been fortunate to have wonderful friends who have seen me through countless bad times. My guide has also been an inner voice, not the voice of my madness, but the voice of my creative spirit, the thing that has sustained and enriched my life, especially over these latter years.
My wood of wilderness savage and stubborn, the mire through which I have waded with sometimes failing energy, is the experience of growing up in a family torn to shreds by alcoholism and domestic violence, and my descent into maelstrom of madness. I do not talk about these things to seek sympathy or pity, I speak of these things because, for many of us who have experienced these major life events, we have been disempowered and silenced by them. So I speak to the world at large about my world within.
Family Matters
My father was a wife-beater, a violent man with a temper that raged when in full flight. He was scheming and deliberating in his persecutory ways. I witnessed his vile acts, his vile, vitriolic abuse of my mother and its aftermath. It was the silencing of my siblings and me that was the most extraordinary thing about witnessing domestic violence. For so long no one knew what was happening in our house. We would witness pure terror one night, go to school the next day and tell no one, not even our best friends, what had happened. It was a silence that tore our inner world to shreds. We I didn't talk much about it to each other and our parents said nothing the morning after, as though it hadn’t happened, as though it was a figment of our imagination. Of course there were my mother’s black eyes and bruises that were testament to the night before. The silence was unbearable.
It is a function of our society that we do not air the family’s dirty linen, rather we hide it and let it rot in the basket, its stench permeating everything, contaminating us like a poisonous gas. The dysfunctional family limps on, never being honest with itself, never allowing itself the space to reflect on the damage being done to each of its members. This is the nature of domestic violence and all the baggage, and damage, it carries with it.
I was sent into the world vulnerable, melancholic, unprepared and ill adapted for what was going to enmesh me in my early twenties. Nothing could have prepared me for my meeting with madness. My world had been falling apart and I had been powerless to arrest the decline. With my emotional desperation that came from trying to come to terms with my family, and my gradual unraveling that took place while at university, I was a mess. When madness came, I plunged into an emotional torpor.
Into the Dark Wood of Madness
When I was 23 the ‘dark wood’ engulfed me. In madnessI wandered off from the straight path’. Suddenly my mind was full of spooks and phantoms that thrust me further into a miasmic chaos of veiled meanings and blurred reality; into a complete unknown. The nights and days of the voices, the delusions of grandeur where I thought I could ‘change the course of mighty rivers and bend steel in my bare hands’, or the paranoia of persecution and fear, have been a defining force in my life. I cannot imagine a life without the voices; without the dark thoughts and cascading emotions. I have lived with schizophrenia and all its moods for thirty-four years, its path littered with shards of glass and deep holes, with its constant embarrassing moments over which I have no control, with its unreal other worldliness that takes you to places never imagined, with its utter confusion that renders you paralysed.
Imagine having a nightmare from which you cannot wake. Imagine being tormented by voices in your head that won't relent in their damnation of everything you have ever said, thought or done. Imagine the terror of thinking everyone can read your thoughts, or see into your mind, as though your skull is made of glass. Imagine the aloneness and loneliness of living in a mind space where you think you are the most evil person in the world, and cannot let anyone touch you because your evil is so powerful it will destroy those who do. It is impossible to explain the isolation one feels during a psychotic episode. The emotions are profoundly raw and one's sensitivity is heightened to a fever pitch, where everything impacts on you in a way that is unbearable and disturbing. When Information floods in unfiltered creating such confusion, simple things like having a wash or choosing which chair to sit in, are almost impossible to do. And then there is the deep depression, the dark, black hole into which your mind disappears; the endless spiraling vortex that often accompanies, or follows, the psychotic episode.
There have been times when my head has been filled with voices, all of which seem to have a mind and agenda of their own. I wonder, is it possible that in a past life I was subjected to brain surgery, where someone implanted a transistor radio in my head and then gave the controls to someone who fiendishly delights in randomly switching them on and off? How else can I explain these uninvited visitors? I don’t know where these voices come from or where they go, why they torment me, why they are unrelenting in their pursuit of my demise. They speak with an authority that is unearthly. They say the most extraordinary things.
Sometimes there are several voices engaging in a dialogue, commenting on my thoughts and actions, passing comments on how ugly I am or that I have bad thoughts and that I am disgusting. They swear at me and call me hideous names like a slut, moll, hag, and Satan’s whore. They say how loathsome I am, that I am the scum of the earth. They talk about me as if I am not there, talking about me in the third person, chanting obscene things and laughing at my imperfections. Other times there has been an insidious whisper quietly undermining me, turning me against my friends whom they claim are my enemies wanting to kill me. Then there is the chorus that sounds remarkable and magnificent like a chorus from Handel's Messiah.
I am never totally free of the voices and I have learned to live with them in a fraught relationship. I go to bed every night to their persecution and denigration and wake up to them in the morning. The voices are unrelenting in their attempts to undermine me. I try to drown them out with loud music (my MP3 player is a godsend) or sing to myself to distract my attention. I do mental arithmetic at night to ward them off. We have a very complex relationship that has meaning only between ourselves. I always have this unnerving feeling that maybe the voices are right and I am as evil as they say; that I do not deserve love or kindness from my friends; that I should kill myself and let world be without my evil presence.
There has also been a rich delusional world. Some delusions have been very amusing, some deathly dark and disturbing. I once thought Beethoven had stolen the nine symphonies from me thinking I was a genius! It was disappointing when I realised I hadn't composed the music and wasn't this wonderful person with a remarkable talent. I thought my friend Veronica had just given birth to the new Messiah and, as it was a girl child, I wanted to tell the world of this feminist Second Coming! I once thought I was Eve and had given Adam the apple. I thought I was responsible for the terrible state of the human condition and had to apologise to God for what I had done. This was a modern delusion because I thought if I could get God's email address I could email him my apology. The way I would do this would be to contact the Pope in Rome and he would have the address because he has a hotline to heaven. I consulted the Melbourne telephone directory, only to find that there are a lot of Popes in the listings but none that said Pope John Paul II who was the Pope at the time. Running parallel with this delusion was another one where I thought I had shot the albatross of Coleridge's poem and could feel the bird hanging around my neck. I felt burdened and overwhelmed with all this going on in my mind. I was Atlas with the weight of the world on my shoulders. It was exhausting and unrelenting. When it was over, I remember feeling absolutely spent and only wanted to rest.
There was the time, during one of my hospitalisations, when I thought I had been raped by the devil. That was particularly terrifying, especially when it was time to go to bed, because I thought he was in my bed waiting to rape me again. I would ask the night nurse to go into my room and pull the blankets and sheets of my bed down so I could check to see if the Devil was waiting in my bed to rape me again. I was terrified of going to bed because I was going to some horrific meeting with the Devil who would violate me again. I also was certain I was carrying the Devil's child and felt the evil writhing in my womb. I remember asking the doctors for an abortion to rid me of the child that was poisoning my body and sullying my soul. I kept asking the Catholic priest, who would visit the ward, if he would perform an exorcism for me to purge me of the Devil. He refused. I felt abandoned.
I once very nearly killed myself when I thought I heard Bob Hawke, who was then the Prime Minister, talking to me on the radio saying I was contaminating his society and should rid myself from the world. There was no questioning the truth of how I felt, I was certain that I was a bad influence that had to be dealt with. I had to quickly remove myself from society before I destroyed it. It was a serious suicide attempt and I am lucky to have survived it.
The delusions have been many and varied. Many have a religious aspect to them. I was, and still am, fascinated by religious symbolism and imagery. I use it a lot in my poetry and it features heavily in my delusional and hallucinatory worlds. I have actually had visual hallucinations of the Virgin Mary - she looked just like a statue in a Catholic Church! The delusional world of psychosis is a richly embellished and mysterious world and you can see why people could get into the false notion that people with schizophrenia are on a journey of spiritual discovery.
A psychotic episode is like a huge dream or nightmare from which you cannot wake. It is like a Brueghel or Bosch painting, a Webern quartet, a mysterious Kafkaesque world. It is a fantasy of demons and angels, a pageant of lively characters from a miracle play, a procession of popular cultural identities in the guise of heroes and villains sent to give cosmic messages. To the uninitiated it seems richly creative. We utter the unutterable, see the unseeable, sense the insensible, all making us appear to have a special knowledge of the world. In our madness our imagination is in overdrive, we are at the limits of our creative capacity that makes the experience seem inventive, like a work of art. This world, unfortunately, renders us at a loss to act in any real, meaningful way. We are in a world we are unable to share with the rest, lost to the hallucinatory fervour of a fractured mind. In the end, there is nothing spiritual or wonderful about some of my delusions. They are painful and disturbing and lead to a loss of functioning. They have led to an intrinsic confusion that cripples the resolve to make sense of the world. I was confused for years.
I have also been accosted by a hag I see in the mirror. She is an ugly sight. Her hair is a tangle of incandescent wire, her eyes are blood red and pierce me like a laser, her mouth is smudged with bright red lipstick, her face is pock marked and her teeth are decayed. She laughs at me and mocks me. And I wonder to myself: is this hag the embodiment of the evil woman my voices tell I am? She is a dark force.
The Search for Identity
There I sat for an eternity, at least what seemed an eternity, in and out of Larundel Psychiatric Hospital, changing from medication to medication to find one that suits with the least debilitating side effects, drifting from one aimless year to the next. At the age of 23, I was, like many other young people, in the process of forging a life. For many young adults, the rites of passage include entering significant relationships, finishing tertiary studies, staring a job. When these life events are interrupted by becoming psychotic, the chances of consolidating your identity are swept away. With the onset of my mental illness, my emerging fragile identity was systematically stripped from me. It was an inexorable process. It was unrelenting. It was demeaning and destructive. I would lie in bed feeling sedated by the medication and found I was not doing anything. The less I did, the worse I felt about myself, the worse I felt about myself, the less I did and so on. It all conspired to render me helpless and inactive and without a sense of who I was. I spent years in bed too ashamed and stupefied to engage with life; too afraid to meet new people because I feared the question; hello, what do you do? I had no answer. I walked in the shadows of others and cast none of my own. I had no self-esteem or confidence. It was harrowing and humiliating.
To have an identity is pivotal to leading a life with dignity. People create an identity in various ways; through work, through relationships, through cultural and sporting pursuits, through creativity. Some people seem to have an innate feeling of self-worth that is just there no matter what they do. We all do it differently. We all need an identity to facilitate getting through the problems we face each day; to process the complex world in which we live and which surrounds us with its cloying spectres. When I had no identity I moved as a though I was invisible without anyone taking much notice of who I was, or what I did. Even if that was not how others saw me, it was how I thought of, and saw, myself. The misery of having no identity is compounded, and made more painful, by the frequent journeys into the unreality of madness and subsequent hospitalisations.
Identity is something that enriches the inner world, and affects how one perceives oneself and how one then relates to others. Identity is a tool that sometimes allows communication and sociability, and fosters self-worth. And it becomes linked into a spiral that feeds itself. The more self-confidence you have the more you do, the more you do the more self-confidence you have. But you have to break the barriers set in place that prohibit the first tentative forays out into the world.
For many of us we are only seen as our illnesses and nothing more. We become the label to which we are shackled and thus identified. Treatment and recovery ought to be about restoring self-esteem and finding something that gives feelings of self-worth and, ultimately, identity. Treatment should be about helping people find their creative spirit, to understand who they are in a world that is often unforgiving and harsh, especially towards people who are deemed different or problematic. Treatment must be about helping people get beyond their illnesses and labels, to become citizens with the same rights and privileges as everyone else. Quality of life is about living in an environment that allows someone to express themselves freely and have a sense of self that is strong, healthy and validated.
The Kindness of a Stranger
In the wilderness of a psychiatric hospital, an unlikely place, there have been moments of great humanity and kindness. I have always maintained that one unpleasant aspect of suffering from schizophrenia is that I never know when I am next going to embarrass myself, because it is an illness that does not always obey the rules of society. Those of us who find ourselves in those mad spaces are often at the mercy of the kindness of strangers. Such is our vulnerability with an illness that places us in perilous situations. We are everywhere and anywhere: cafes, church, the footy, the tennis club, at university, on the street, next door. Perhaps we all are at the mercy of the kindness of strangers, but we, especially, who find ourselves in the most vulnerable of situations, are in particular need of kindness and humanity. I was given this in the most desolate of places. I was taken to the old locked ward of Larundel and on being admitted was physically and emotionally abused by the nurses. I was upset and was sitting in the day room weeping when a woman came up to me and started brushing my long hair. It was late at night. This woman was unaware of her impact, but I remember her well, even though I never saw her again. She spoke no English but her strange words were comforting as she gently kept on brushing. She taught me a great truth and showed great humanity in a place of utter despair. I felt calmer and appeased by her kindness and I remember the moment like it was yesterday. Even in the grip of psychosis, you can remember things as clear as day. I sometimes wish I could forget some of the embarrassing things I have done in the sway of madness.
Seeking Wellness
Wellness is a state in which I can make connections with the people around me and intersect with daily activities. Even a simple thing like being able to get out of bed is an achievement of wellness. In fact, getting out of bed is an act of hope. There were the chronic years of lying in bed because I lacked motivation and could not face the day that was laden with the black threatening clouds of self-hatred and loathing. When you cannot always be sure of reality it makes you extremely vulnerable. You are sometimes reliant on others to create reality for you. There is also the deep sense of alienation from oneself and others that has to be negotiated. There is the enormously difficult labour of having to rebuild yourself and reintegrate yourself back into a world that generally does not understand mental illness. The Maori people with a mental illness talk of themselves as tangata whaiora, which means a person seeking wellness, and that is how I see myself. In one sense we are all people seeking wellness though some of us have a more difficult path to tread.
Seeking wellness or recovery is a unique experience. Mental illness is as individuated as the many people it touches. Because it is an illness of the imagination, an illness that consumes your life, recovery is going to be a singular experience too. My recovery is not someone else's. Recovery for one person might be getting out of bed for one day of the week, while recovery for someone else might be finding full time employment. Recovery is a process sometimes with two steps forward and one step back. It can be slow, painful or quick. It is not linear but circular, sometimes with symptoms recurring and with set backs. There can be periods of rapid change or little change.
Recovery is a process rather than an end point, and it needs to be helped by clinicians and friends who understand the difficulties associated with having a mental illness. Much of my recovery has been aided by having good friends who have given me a home and space in which to live a life of comfort and stability. I could not live as well as I do without their support and love. They have helped me on my journey and made it possible in the face of complete annihilation. Recovery is a deeply personal journey in which one's attitudes and feelings grow beyond the catastrophe of mental illness. It is about self discovery and self renewal and is a very emotional, transforming experience. Recovery for me is accepting that I cannot deal with my schizophrenia alone and recognising that the enemy is not my friends or doctor, but that the enemy is the illness. Recovery is a journey of hope, a rediscovery of who one is and an affirmation of oneself in the community; to be able to say with conviction but without egotism: I am.
Asylum
In the 1990's there were vast and sweeping changes made to the mental health system in Victoria. There was a shift away from the stand alone psychiatric hospitals to what is called care in the community. Psychiatric wards were established in already existing general hospitals and services were integrated into these institutions. The average stay in hospital has been reduced to around 8 days and people are discharged to be looked after by case managers and ancillary workers or private psychiatrists. Unfortunately, there is a paucity of medium term beds in these wards and people are being sent out into the world unwell, often to the care of relatives or friends who themselves are not resourced or supported to undertake their intensive caring role. We have lost the notion of asylum, a haven, sanctuary, safe place or a retreat, by making people who are unwell live in a community that really doesn't want to know, let alone care for, them. In the old days people would say to you, never let yourself be put in a psychiatric hospital, you'll never get out. And it was true. You would be there for weeks, months, if not years. But now it is impossible to get into hospital such is the pressure on the small number of beds available in the acute wards. We, the mentally ill, are in the gaze of the community more unwell than ever before and it is creating a fear and loathing of us. Stigma is an issue because people see us as unwell and as a nuisance. At least we were fed and housed in the old hospitals and had time to rediscover our sanity and could just be without the stress and pressure of knowing were might be tossed out after a short time. It takes time to recover from a psychotic episode. I am not suggesting we go back to the days of large hospitals, but what we have at the moment is inadequate and leaving the mentally ill and their friends and family in a situation that is untenable and failing everyone.
Healing Words
Poetry has been a lifeline, the hook on which I hang all my queries and ruminations about the human condition and my place in this world. Poetry is the place in which ‘I must talk about things other than the good’. Poetry is my way through the wilderness. It is my interface with the outside world; my way of contacting it and grasping it. I offer myself in my poems to the reader in the hope of bridging the abyss that sometimes seems so profoundly deep and insurmountable. From the ashes of my madness my poems have risen giving me a new life and reason for being.
The social theorist Theodore Adorno said two things in response to the holocaust. To write poetry after Auschwitz is barbaric, and a beautiful thought in a time of pain is a lie. In times of distress and pain, whether cultural or personal, we more than ever need the compelling powers of poetry. Poetry seeks to peel the layers from life’s distortions and travails, to give meaning where meaning cannot be found. Gary Geddes (1996) suggests poetry has the power to cut through all the crap we accumulate in our lives and touch us to the quick. There is exhilaration in poetry. Language seems to be elevated to a new level that goes beyond reason’s domain, and poetry explores this unknown terrain, some saying it enters a kind of madness of its own.
It is through poetry, a language imbued with endless possibilities to peel away the layers of the myriad meanings society has developed over time, in which I speak. It is a way in which we can understand each other and ourselves; a way in which we can delve into the depths of our souls and contact parts of ourselves we barely thought existed. Poetry can be subversive in the way it can use language as a rallying point around which we can gather to express our inner feelings. Poetry is a language that can talk about madness in a challenging and unique way. Poetry can give meaning where meaning cannot be found. It can reveal aspects of life that often remain obscured. The mind's eye is provoked by a use of language that confronts and challenges, that lets one enter the wild side of meaning and experience it in a creative and powerful way.
Some say, poetry is the view from the sick room of life. My poetry comes from a similar place; my 'sick room' of madness, but it always rests in the cradle of language, waiting to be formed into utterances of an emerging child fired with a revelatory fervour. My poetry comes from my mad mind's journey into its interior mindscape, the inner reaches of the 'sickroom' of the other side, from which it emerges, in a creative capacity, distilling the many shades of life's travails and joys. My aim is to move angels to tears.
I make poetry out of the misery of existence, using whatever language I can to transcend the barriers my madness builds around me. The troubled mindscape becomes a palette, with its textures and colours the raw materials that inform the creations bursting forth from the senses, enabling me to document the ravages of madness on those it touches. And language is the tool that enables this to happen. This is my language of madness. This language connects us to the collective unconscious. Poetry is at the forefront of this urge to understand what it means to be human and to incite rebellion.
If nothing else, poetry has given me the means by which to recreate my identity. With the onset of mental illness, I was left with a sense of failure and distress. I felt like a shell; a being of no substance, a victim of the spooks and phantoms that pervaded my mind. Escaping this island of madness came in the form of poetic utterances. Regaining an identity where I felt at home with myself, and at ease in the public gaze, was essential to surviving the onslaught of mental illness. I am not, however, saying you only have to write a poem and you will be healed. It is not that simple.
The experience of creating something, bringing into being a work of art that did not exist before the creative moment, is wonderfully empowering. And this is especially important for those of us who live sanity-challenged lives, where we need every bit of empowerment we can find. Poetry has opened doors I never thought would open for me. It has been like a miracle. The creative life is a vocation, a calling, a way of forging an identity with substance and meaning, a leap of faith.
Over the years, poets have discovered that beauty could be made from ugliness, sublimity from sordidness (Pratt 1996). Baudelaire saw the role of the poet as being the one to bring golden verses out of stones’ and ‘flowers out of evil (Pratt 1996). Wallace Stevens says, the poet is the priest of the invisible (Pratt 1996). And what is more invisible than the inner world of madness? I have discovered that writing about my madness, and life experiences, has enabled me to delve the depths and turn disaster into celebration, to lay claim to experiences outside the norm and explore their meanings. My poetry has taken me on a journey to lands never before seen, where I have found myself crying with angels and writing words that attest to who I am.
More recently I have moved on from poetry and turned my hand to prose. I have written my memoir called Flying with Paper Wing. This is a new direction for my writing and something I never thought I could achieve. Seeing my story laid bare before me was confronting and puzzling. The book is a like a gift from a benevolent angel, the words leaping at me from the pages with their pain and joy, their anger and peace, their complexity and simplicity. New doors have opened and a whole new world beckons me because of it. I wrote Flying with Paper Wings to explore my life and reconcile much of its conflictions and pain; I also hoped that in writing it I would be able to connect with people who have shared some of my experiences and to tell them they are not alone.
So I call myself mad and write about my madness as a way of reinventing my life. Being mad is like having a living hell in one's mind, and is an experience I would not wish upon anyone else, including my worst enemies! However, it is through writing that I seek to subvert the dominant paradigm. I seek to give the experience validity. I seek to order the disordered through the use of ordered language, to connect with other mad people and celebrate our difference. I am not afraid to claim my madness. And being the madwoman, I declare war on a society that uses language to vilify and stigmatise those it chooses to marginalise. I seek to be non-conformist in talking about madness that has been buried beneath the rubble of society's inability to cope with that which it has perceived to be anti-social and renegade.
The future, however, always looms with its unpredictability. The fragility of sanity renders its own story with its own meanings and I walk in its midst with trepidation, walking in the 'dark wood' where my nightmares wrestle with my dreams. Nevertheless, the Muse inspires me, allowing me to revel in her poetic utterances when she claims me for herself. At least I now have hope and an identity, something I didn’t always have.
I am no well of wisdom. I am simply someone sharing my vulnerabilities through my writing; someone making a journey with countless others who have their own stories to tell. My guides have been, and still are, vigilant, like Dante’s, for which I am thankful. I am hopeful my wanderings will end in triumph like Dante's.
We climbed, he first and I behind, until,

through a small round opening ahead of us

I saw the lovely things the heavens hold

and we came out to see once more the stars.
Yüklə 1,51 Mb.

Dostları ilə paylaş:
1   ...   5   6   7   8   9   10   11   12   ...   31




Verilənlər bazası müəlliflik hüququ ilə müdafiə olunur ©muhaz.org 2024
rəhbərliyinə müraciət

gir | qeydiyyatdan keç
    Ana səhifə


yükləyin