Side effects of living
10 June 2019
Two writers on their personal battles with mental illness.
Learning to Live in Non-Consensual Reality
By Jayasree Kalathil
Reflecting on why he became a writer, the Nigerian novelist, Chinua Achebe said in an interview in The Paris Review:
There is that great proverb—that until the lions have their own historians, the history of the hunt will always glorify the hunter. That did not come to me until much later. Once I realized that, I had to be a writer. I had to be that historian. It’s not one man’s job. It’s not one person’s job. But it is something we have to do, so that the story of the hunt will also reflect the agony, the travail—the bravery, even, of the lions.
These words have resonated with me ever since I’ve tried to make sense of “madness” and find ways to tell its story.
As a mad person writing about madness, people have often asked me for my “recovery story” or “illness narrative”. I don’t have one. I continue to have experiences that have been diagnosed as “mental illness” and understood as “mad”, but the story of these experiences does not follow the symptoms-illness-recovery trope. For me, the story of madness is in the meaning we make of it. The meaning I have finally come to make of my madness is predicated on the socio-political contexts of my life, my immediate communities, and the politics of “the normal” and “the pathological” that define our lived worlds and reality.
As long as I can remember, I have experienced voices and visions not shared by others around me, but entirely real to me. Some are fleeting but others are persistent, like the snake-vision, Pachalippaambu, a wise old soul who counsels me but sulks like a diva when I don’t listen. Other visions are more malevolent, like the Kurathi sisters, nomadic fortune-tellers, who make unannounced appearances to pass judgement on my existence. Psychiatry believes that these voices and visions are symptoms of mental illness. But it was, I believe, the loss of a trusted and protective voice-vision that first plunged me into mental distress.
When I was very young, a funny, self-confident female voice-vision whom I called Ushachechi was my constant companion. Despite being considered outgoing and naughty, as a child I existed in an almost constant state of fear. I was terrified of the dark, where spirits like the Brahmarakshas, Yakshi and their malevolent brethren loomed; of being alone when one false step could get me entangled in the grips of a dark wizard, a Durmanthravaadi; of losing my mother – I was convinced her death was imminent and unstoppable. I did not know how to deal with the constantly fluctuating emotional weather at home, where one moment enveloped me and my sister in the warmth and love of my parents, while another unleashed a hurricane of violence, as my father, an ex-serviceman, slipped into alcoholism. Through all this, Ushachechi protected me. When I was seventeen, without warning, this voice-vision left me. Unable to handle what I experienced as abandonment, amidst the continuing turbulence at home, I started cutting myself. These were mild attempts to start with, but without Ushachechi to protect me, the Kurathi sisters took over. Self-harm became a permanent coping mechanism when my first serious relationship also became tainted by alcoholism and violence. By my late twenties, I had been given several psychiatric diagnoses including depression, borderline personality disorder and schizoaffective disorder.
Growing up in small town Kerala, people who heard voices or saw visions were not entirely unfamiliar. The Velichappadu, “one who threw light on problems”, the oracle who mediated between the gods and their devotees, was revered in our local culture for his abilities of accessing voices and visions. There were ordinary people, too, who heard voices and had visions – in temple yards, under the banyan tree, in the bustle of the market and the bus-stand – but these “mad people” were not culturally welcomed like the Velichappadu. Sometimes we gave them food and clothes, at other times shooed them away or even beat them. One of them lived across the street from us on the veranda of the post office (a story fictionalised in my book, The Sackclothman). Madness, we believed, was the result of karma, or a curse passed on from generation to generation. Or it was a medical illness that required treatment. Be it divine punishment or genetic abnormality, madness was bad stock and we did not speak of it. Thus began my sense of being mad.
The violence I witnessed at home had a major impact on my emotional growth. I rebelled against what was expected of me as a “good Hindu/Nair girl”: well-behaved, studious, on the way to a job, marriage and children, traditional yet modern. I was bisexual and my formative relationships with women had to be secretive by necessity. I had started developing a keen sense of injustice in gender relationships and the roles attributed to women within them. I did not quite know how to express it and turned all of that angst inwards, self-harming and writing bad confessional poetry.
In my early 20s, I left home and moved to Hyderabad to do my PhD. There, I found a vibrant feminist community and got involved in the women’s movement and the students’ movement. It opened up a space for critical thinking about gender, caste and sexuality, and also the phenomenon of madness: its representations in literature and popular culture, treatment in psychiatry and psychology, relevance for women’s subjectivities, foundational constructions within ideas of normality and pathology. It was not always easy. While we talked about the pathologisation of women’s bodies and how the medical system configured and treated women, discussions about our mental health were fraught, especially when talking from an experiential point of view.
While we engaged theoretically with questioning psychiatry and the power of reason over unreason in a Foucauldian way, there was little engagement, in a practical sense, with understanding the experiences of people going through mental distress. When Bhargavi Davar, the pioneer of mental health advocacy and survivor movement in India, organised the first national conference on women’s mental health in 1996, people split into two groups: one proposing a feminist social constructionist questioning of psychiatry, and the other asserting its objective scientific validity. Between these oppositional positions, the lived realities of mental distress went unattended, despite some moving presentations about these experiences.
The medical model pathologised women’s experiences and offered medical solutions: institutionalisation, medication, Electroconvulsive therapy (ECT). The feminist model questioned this pathologisation, focusing on the social and cultural constructions of madness. But, crucially, in those early days of critical public discourse on madness in India, we had no solutions to offer to those who continued to experience distress. Pathology or social construction, what do you do with the experience of distress? Notwithstanding everything I was learning about critiques of madness and its medical, socio-political and cultural management, this question remained.
As I went through more personal turmoil, including the break-up of a relationship and its legacy of violence, the frequency of my self-harm increased; so did the voices and visions, about which I did not speak openly, even in these enabling spaces of feminist solidarity. I tried to take my own life three times. None of the diagnoses that I was rapidly accumulating made any sense. The medication ironed out the texture of my being, and I frequently omitted taking them in an effort to hold on to the shades, shapes and shadows within. I was still looking for answers that would help me understand and cope with the everyday reality of my own madness.
At the national conference mentioned earlier, I had presented a paper on how women writers use the space of their writing to explore madness. I later went to Pune to speak with some women I had met at the conference. We shared with each other our writings and the stories of lives lived in the midst of the confusion of different realities, where our very real companions – benevolent, malevolent or neutral – were dismissed as pathology. We talked about trying to cobble together and hold on to a sense of self lost in the quagmires of medication, of the real joys of creativity and imagination that our mental spaces opened up, and of the sheer exhaustion of spirit that accompanied these experiences. One of the people I met in Pune was the Marathi writer, Kamal Desai, who talked to me about the importance of writing in such a way that the space on the page becomes a political battleground – advice that stayed with me as I began to get interested in our versions of the story of our madness.
A few years later, I set out to collect “stories of self-harm”. On inter-state trains and overnight buses between Hyderabad, Pune and Bangalore, over cups of chai and Osmania biscuits and dinners in each other’s homes, a few of us exchanged stories of scars, both physical and emotional, and our ways of making sense of them. We were from different backgrounds, religions, classes and castes, from different parts of India, but in our stories of assorted mad experiences, there were similarities, too: conflicts with our communities and our families; experiences of violence and sexual/physical abuse (some within the family); refusal to conform to normative Indian subjectivities and values; of being subjected to psychiatry and religious healing. Those of us who were feminists had learned that “experience” could be a valid context for knowledge making. Yet, the idea of a subjective position from which to make a claim to experience that could influence “objective knowing”, was deemed suspect in our case, because the mad person’s subjective position was presumed to be predicated on a broken mind and, thus, “faulty”. However, we were also discovering that the story of the hunt was the hunters’ only until the lions spoke, and speak they did, even when near-fatally wounded. The personal was becoming political, and the political, personal.
I was also finding my own voice and learning to speak. I was lucky enough to do this within a “community of practice”, where Davar’s pioneering work on mental health in India was taking shape, where Anveshi Research Centre for Women’s Studies in Hyderabad and Bapu Trust for Research on Mind and Discourse in Pune provided homes for critical thinking. I finished my PhD and started working at Bapu Trust where, among other things, I was the founding editor of India’s first mental health advocacy newsletter, aaina. Bapu Trust’s work was creating a new critical discourse on madness and mental health, and my political identity as a survivor was consolidated as a part of it. I continued contributing to this discourse after I moved back to Hyderabad and joined Anveshi as a research fellow and set up the Study Group on Mental Health in 2000, a forum for critical discussion, exploration and knowledge production around the experiences and epistemologies of madness – a “Mad Studies” group from today’s perspective.
On an everyday basis, these collectives and friends sustained me, physically and politically, when I was going through some of the most difficult periods in my life. They took me into their homes when I was homeless, gave me food and money when I was broke, sat up vigilant through nights when malignant voices and visions took over, accompanied me to the casualty after self-harm episodes and to psychiatric appointments, and, above all, held space for me. To this day, because of this, I believe that wellness and healing are not individual processes but collective and communal. I learned that feeling distressed about traumatic experiences or rebelling against culture, tradition and community was not only non-pathological, but part of finding one’s place in the world.
The specific tools that helped me understand and cope with self-harm and voice-visions came from the faraway mythical “West” where some people were creating their own healing practices. The Hearing Voices approach and Patsy Hage’s work with Eric Romme and Sandra Escher offered a way of thinking about voices – until then, dismissed as “hallucinations” and “delusions” – as an understandable, if unusual, and meaningful part of being human. Although I would later come to develop a critical position on the Hearing Voices approach, especially of its insistence on isolating a defining traumatic experience and its primary focus on voices as opposed to other experiences such as visions and thought processes, it helped me develop a phenomenology of my experiences that did not immediately dismiss them or render them symptoms of a chronic illness. To be clear, there were no Hearing Voices groups in India and my learning was purely based on reading other people’s stories.
A similar process of learning in relation to self-harm came with the discovery of the revolutionary work spearheaded by Louise Pembroke in the UK. Self-harm is considered “inappropriate” behaviour and is a diagnostic criterion for several psychiatric illness categories. Reading the book, Self-harm: Perspectives from Personal Experience, which Pembroke edited, suggested the possibility that self-harm was an entirely appropriate response to difficult life events; what was “inappropriate” were the psychiatric – and societal – responses to it, which sought to medicalise human response and shame people, calling those of us who self-harm manipulative, emotional, self-centred and even “failed” suicides. Having lived through other people’s (including professionals’) ridicule, dismissal and attempts to get me to stop self-harming, it was especially significant when I learned about the philosophy and practice of “harm reduction”. The idea here is not to medicate or manipulate someone to stop self-harm – which, essentially, results in taking away their coping mechanism without changing the contexts and causes of their need to self-harm – but to equip them to deal with the underlying distress and do it while learning possible ways of reducing the risks associated with self-harm: cutting oneself safely; instigating pain by safer means, for example, holding ice cubes in your hand; learning about basic anatomy and wound care; etc. Although still considered taboo in psychiatric circles, there are plenty of resources in this area, developed primarily by survivor scholars and advocates. (I did not know then that many years later I would move to the UK and work at the National Self-Harm Network, the very place where Pembroke pioneered ideas about harm minimisation.)
There were not many people in India with whom I could discuss these possible alternative ways of being and living. Still, it helped to know that there were other ways of understanding my experiences. Psychiatry, and other disciplines tasked with normalising human behaviour, sees reality as constituted within a socially constructed consensus, and any deviation from that consensus reality is deemed pathology. The idea that “reality” in itself could be explored further and that the uncommon experiences of voices and visions that I had could be understood as living “not in consensus reality” was solidified in conversations with my friend and survivor artist, Theresa Kiyota Rahman de Swiet. This idea is not just about people holding different beliefs about reality, but about the possibility of different realities co-existing, which some may have access to while others do not. It spoke directly to my experiences. Paris Williams’ book, Rethinking Madness defines consensus reality as “the set of beliefs and experiences considered to be valid according to an individual’s society or group”. Psychotic experiences are those that are considered anomalous – experiences considered invalid by a given framework of consensus reality – and causing distress or limitation. In my opinion, while some people may experience non-consensual reality as distressful and would need support in this situation, it does not, in any way, take away from the fact that those experiences are still valid and “real”.
In many ways, finding the specific tools for understanding and living with my voices, visions and self-harm has been a lonely journey. Two factors have been crucial in reaching this point in my life where I am able to live with my voice-visions: one, there are people in my life who accept how I make sense of my experiences; and two, coming across different theoretical and philosophical ways of understanding my experiences. Both have validated my experiences. Another learning point was accepting that I had a role in mediating and helping others understand. Earlier, I was consumed with anger and frustration when people either dismissed my experiences or interpreted them in ways that didn’t make sense to me. The concept of non-consensual reality helped me accept that hearing voices or having visions is not something that people who do not experience them could automatically understand, and that I had some responsibility in helping them understand these.
I am no longer in contact with mental health services. Now, when I experience voice-visions that are distressful, I remain at home, cut off all contact with the outside world, and let the madness play out. Several things have helped in this: accepting the voices and visions as part of who I am; trying to cultivate a lifestyle that is not utterly chaotic; paying attention to simple things like getting enough sleep, even if it is with the help of sleeping pills; and doing things with my hands that help me develop an internal sense of calmness – I quilt and garden, both activities please me physically and creatively. Crucially, having a partner who accepts my voices and visions and never questions my reality has helped. After each sojourn into non-consensual reality, we talk about his experience of witnessing my madness and how he coped with it. It makes both of us feel safer.
Throughout, I have remained politically active in the collective challenging of psychiatry as a mechanism for classifying and controlling human behaviour and its collusion in racialised and sexist thinking and practice. As a researcher, I work with other mad-identified people to produce and validate a knowledge base that interrogates psychiatric hegemony in understanding madness. Nearly a decade ago, I started Survivor Research, a virtual collective of “mad” researchers, writers and trainers. As an activist, I work with user/survivor groups where people support each other and share in social action for justice. The feminist, anti-racist and user/survivor movements that I am part of have kept the agenda of social justice centrestage for me. I like to believe that I am helping in some small way to keep the lions’ stories relevant. Despite the tendency to individualise distress and, by extension, the imperative to “recover”, the embodied experience of madness, I have realised, is crucially linked to the social and collective. It is personal and political. Mostly, I cannot see the difference.
Enter the Light
By Roohi Kapur
Through the cracks
In my imperfect mind
True light illuminates –
I feel elated
Lightheaded and joyous.
This is my miracle
That I walk on Earth
That I eat, breath, live and love
Daily, I am grateful.
This light –
It does not touch the sane
Because their minds
They have no cracks
And so –
They judge us!
We all have problems, but in the rare moments when one sees a ray of light shine through – it is a miracle. And that is how I have always viewed life – as a miracle. Whether to marvel at the accident of my birth – to be privileged to be born into a respectable, educated and loving family. Or for all the blessings I presently have. Or when I solve a math problem or that eureka moment when the wisdom of a poem hits home, or the brilliance of a genius, or the masterstroke of a sportsman. Or that breathtaking gasp, when the views enthrall – the flutter of a butterfly, the glide of a bird. Yes, these are miracles, and they happen every day and I am ever so grateful for this life.
Despite my positive outlook today, I cannot deny that I have struggled for years with depression, mania, heightened senses. I have struggled to understand my Self and my true role and purpose in life. It’s been difficult to understand and see patterns in my Self, my moods. In this journey of introspection, I have chosen to be a bit of a recluse, preferring to be with myself and only a few others. It alienates me, and I realise that I am alone. But in my effort to overcome and move forward I feel I have become strong because, primarily, it is a struggle to be won from within.
To go back to the beginning, I was first diagnosed with schizophrenia in 1992. I had reached a catatonic state – unable to emote, react, barely able to function. This had not happened overnight. I had ended a very dear relationship and it had shattered me in more ways than one. I was helpless and, suddenly, I did not even know what I wanted to do with my life. At 21, I felt that my goal of pursuing higher studies in the US was not a good plan. I was lost, clueless about my future. In my personal life, my friends from school and college had moved on. Things changed in the family as well – my sister, who I was very close to, got married and shifted to a different city, and my brother was planning to get married. It seemed like everyone had a busy life, whereas I didn’t know what I was doing anymore.
Everyone at home was busy preparing for my brother’s wedding and I seemed to have become invisible, alone in my misery. While I do not (and never did) blame my family for not noticing the signs, it was not long before I lost interest in everything that was once important to me. I was drifting.
It was my father who first noticed the huge change in me. I still remember my birthday that year. My parents had taken me to Connaught Place, the bustling commercial hub in the heart of New Delhi, to buy a gift. I walked into the trial room to check out a few pairs of jeans but because I had lost a lot of weight all of them were hanging on me. I could not decide on what I wanted; nothing interested me. I started to say that I did not want anything but instead I began sobbing. It was my birthday and I was miserable…
Soon after this incident, my father took me to meet a senior retired doctor from the All India Institute of Medical Sciences (AIIMS). I still remember this elderly Sikh gentleman with a grey beard, wrinkled hands and a soft voice. I also clearly recall seeing the sign outside his door that said ‘mental’, and thinking to myself that I was going mad! But I trusted the doctor instantly because he was Sikh and elderly, just like my father. The two spoke in hushed tones as I looked on.
The doctor recommended that I go for electroconvulsive therapy (ECT), I was in a severely catatonic state. My brother’s wedding was only a few weeks away and this treatment would have the fastest and most effective results, he assured. Although my brother suggested postponing the wedding, my parents felt that pushing the date ahead would invite a lot of questions, complicating things for everyone. I never questioned their decision; at that time it was probably the best course of action.
When my treatment started, I remember the cold hands on the sides of my head and being plugged onto wires – then everything went blank. A blank that stretched on for weeks. I do not recall any of the wedding events. The photographs show me all dressed up, with a plastic smile and vacant eyes. They also reveal that, knowing my numb condition, my brother kept me by his side to protect me from the questioning eyes and hurtful tongues. Despite my foggy state I do recall that a dear friend had come for the reception, pulled me into the Ladies room and bombarded me with questions: What has happened to you? Do you even know what’s going on? Why can’t you talk normally?
For me, everything else was a blank. I could never muster enough courage to watch the video recordings of the wedding.
When the ECT sessions finally ended, I was put on very strong drugs – several strong drugs, in fact. And to top it all, I had to appear for the final exams of my Masters in Mathematics. The doctor felt I should not miss them. Of the four papers I had to give, I cleared two and wasn’t able to appear for two. I thought I would complete my Masters the following year, but I never did.
I was in counselling to try and get my life back. I also spent quality time with my father. He took me to the Siri Fort Sports Complex to play sports or for walks in the morning. He also took me to spiritual (not religious), peaceful places like Shanti Sthal near Qutab Minar. One evening, while we were there, he gently said to me that the mind is a beautiful instrument. But sometimes, a person who is very sensitive gets affected by the circumstances and situations around them. They think too much and forget to give the mind a rest. In a disturbed state, the otherwise well organised files of the mind get scattered. And in the chaos one loses balance – of the mind, body and spirit. One feels broken. He told me that I needed to develop a routine, relax and let my mind reorganise itself. He was convinced that the body and the mind can heal themselves. Even after seeing me suffer through several terrible episodes, he held on to the belief that one day I would learn to manage my moods, my mind and my Self, without medicines and without doctors. I am not quite there yet, but these days, I take a very low maintenance dose of my medicine, I monitor my moods regularly by maintaining a journal, and I try to do what I can to stay physically healthy.
Schizophrenia is a very traumatic disease and only someone who has experienced the depths of being lost in a psychotic episode will know how tough things can get. Whereas the illness itself is a battle, the recovery, too, brings with it great despair. You feel stripped of all sense of self and are clueless of who you really are. Add to these crushing feelings the always heavy doses of medicine and it can take years to feel normal again. And just when you start to feel in control, you’re back in the thick of it. Each time you take three steps forward you are pushed back two steps. It’s never-ending; it’s tiring and maybe that’s why so many give up on life. I tried, too. I just wasn’t aware that I had given up.
Looking back, I wonder what I would have done if my father hadn’t been there for me. He stayed up endless nights, he tried to rekindle my innate sense of spirituality, he never gave up on me even when I had closed all doors and refused to live. He kept moving forward with me, one step at a time.
I got my first job in an encyclopedia company, sending out postal orders. It was routine and monotonous. I could not understand what I was supposed to do. I would often notice my colleagues look at me and whisper. I felt shamed, I felt miserable and I felt incapable. I also felt stupid and clumsy and very sleepy all the time. I felt I was getting into a depression as my self respect and self worth slowly eroded.
So I quit this job and joined a market research company. Here, I met a colleague who changed my life. She was a godsend, as it was because of her that I started re-connecting with humanity. She became a mentor, she counselled me, and made me believe in myself. She said I was creative and gifted. I had forgotten that I was all those things. I started reading again. She made a reading list for me and I devoured each book. Reading made me understand my illness. I realised that there are others like me who are suffering and that many of them are gifted and well-known people. That many geniuses are usually on the borderline of mental instability! I loved each one of these stories that unravelled for me different facets of myself and often mirrored many of my own issues. My colleague/mentor/friend advised me to take a year off and learn to paint and write. Just hearing her say those things to me gave me a new lease of life, a reason to live. It felt good to be encouraged and I was slowly getting my confidence back. I never really took that break to pursue art and writing, maybe now I will.
I went back to my doctor and told him that I was not schizophrenic. He had said that I could never be off medication and that I would never have children because of this. I told him I would prove him wrong.
I found a great psychiatrist closer home, who has been counselling me for over thirty years now. She confirmed that I was bipolar, not schizophrenic. Under her guidance, I got better – I met my husband, had two babies and even breast fed each one for at least a year. In other words, I was off medication for nearly two years. Too bad my previous doctor was not around to see me experience this new bliss!
Besides changing doctors, the other real blessing was meeting my husband. He has accepted me just the way I am. On our first date I had told him everything about my life, with complete details of the highs and the many, many lows. After I finished, he simply held my hand and that felt like a miracle. When I had my first episode in front of him – we were in a relationship then, not married – he stood by my side, rock solid. Later, he told me he just wanted to see me smile again. Back then and even now, he believes that I can do anything and today I, too, know that I can!
~Excerpted from Side Effects of Living: An Anthology of Voices on Mental Health, edited by Jhilmil Breckenridge and Namarita Kathait, and published by Speaking Tiger in association with Women Unlimited, 2019.
~Jayasree Kalathil is a researcher, writer and translator. She runs Survivor Research, a virtual collective that focuses on activism and knowledge production at the intersections of madness, “race” and gender. Her works includes Dancing to Our Own Tunes, Recovery and Resilience and the co-authored textbook, Values and Ethics in Mental Health. Her novella, The Sackclothman was hailed as one of the “ten controversial books Indian children must read”. Her translation of the Malayalam writer N. Prabhakaran’s stories, Diary of a Malayali Madman and Other Stories was published earlier this year.
~Roohi Kapur is a keen observer of life and can best be described as a “soul philosopher”. Her family of two beautiful, strong, independent girls; a caring husband; and an adorable dog has been the backbone of her life so far. Her father was her spiritual guide and still shines his light on her. She explores creative avenues (writing, painting, music and being close to nature) that shape her personal growth. She has just published her first book of poems, Ephemeral Musings.