LIFESTYLE
16/01/2019 1:06 PM IST | Updated 30/09/2019 7:58 PM IST

‘My Schizophrenia Is Not A Disease, It's A Condition That Unlocks Worlds'

Though her life has twice been devastated by schizophrenia, a 36-year-old patient has found ways to not just control, but also enjoy her illness.

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A day after my last instalment of ‘Second Thoughts’ was published, K wrote to me on an email address we had listed below my piece. K said she was a patient of schizophrenia, and that like me, she too had spent over a month at a mental health institution in 2018.

When K looked at media commentary about mental health, she found that while writers and journalists had paid much attention to “depression and related sufferings”, they had largely ignored the “complex spectra” of schizophrenia, psychosis or Asperger’s syndrome. I couldn’t agree more.

K said she was constructing a theory of the ‘real’ that was not just a “sum total of things we have words for”. Mental illness, K argued, “was a state of being that pointed toward an awareness of hyper-realities.”  

According to a2005 report published by the National Commission on Macroeconomics and Health, nearly 1-2% of the country’s population suffered from severe mental disorders such as schizophrenia and bipolar disorder. Depression and anxiety, the report said, affected nearly 5% of India’s populace. The report is nearly 15 years old; that no other such report has been released since, tells us all we need to know about how policy-makers in India view mental health.

While testimonies of depression have recently found place in our mainstream discourse, the stigma surrounding mental health is often a result of “severe” disorders being misunderstood. Schizophrenia, even today, remains one of the most feared, and consequently stigmatised, mental illnesses. The book Sybil (1973), for instance, is still referred to by some as the ultimate schizophrenia handbook. It does, in fact, detail the treatment of dissociative identity disorder, not schizophrenia. Usually, patients of schizophrenia do not have multiple personalities. Sybil Exposed, published 38 years later in 2011, walked back from many of the first book’s conclusions. 

I had met patients of schizophrenia in institutions where I was interned after my bipolarity took manic turns, but my knowledge of the disorder barely exceeded the cliché of A Beautiful Mind. K, however, agreed to a correspondence that would allow me some authority to write about her and her condition.  

As K and I spoke, I was struck by the abundance of her ‘reality’. Over the years, she had come to inhabit worlds she had not wilfully invented. They already existed, she said, but as she then pointed out, only she had access to them. K was not haunted by the spirits she saw. She tried to make sense of them. Her condition, for her, wasn’t a nuisance; it made magnificent otherwise banal realities.

At one point, K told me, “The arrogance of the medical establishment is to claim that good medical attention will cure you. I don’t entertain that notion. I know there is no cure.” Far from being despondent, though, K seems to have formulated a view of mental health that exceeds the narrative of treatment. Rather than dismiss her psychoses as unprocessed trauma, she instead uses their residue to enrich her everyday life. K wants to get better, but she refuses to rid her visions of their meaning.  

Much of my conversation with K left me equally intrigued and baffled. Early on, she said, “The world exists in terrifying multiplicity and brilliant plenitude for me to deny it all this glory.” It was clear that K was not looking for sympathy. “I don’t think I have dis-ability,” she wrote. “There is nothing that a normal person can do that I can’t, except under the conditions of an episode. Just like normal people, I am sometimes a bit sick. Sometimes, like last year, terribly sick.”

I felt like I was hearing myself speak.

The world exists in terrifying multiplicity and brilliant plenitude for me to deny it all this glory.”

I began researching schizophrenia. In one of the more illuminating articles I read, Daniel and Jason Freeman, authors of Paranoia: The 21st Century Fear, made the  case that schizophrenia covered a “wide range of often unrelated conditions, all of which are also seen in people who are not mentally ill, and all of which exist on a continuum from the comparatively mild to the very severe.” Schizophrenia, they convinced me, was not “a specific, relatively rare, and rigorously defined illness.”  

According to the Freemans, schizophrenia usually includes one or more of six conditions—paranoia, grandiosity, hallucinations (hearing voices, for example), thought disorder, anhedonia or the inability to experience pleasure, and diminished emotional expression. I started ticking boxes. In my mania, I had been paranoid. I had thought I was God, and I had certainly not been able to think straight. My empathy did, of course, have its limits, but I felt I could understand K’s coordinates a little better.

Where the laws are elastic

K was patient with all my questions. I had too many to ask. We decided to speak on the phone. Her candour and attention, I found, matched the intensity of my curiosity. As we started talking about her first hallucinations, she described them as “enjoyable”.

Speaking from Bengaluru, the 36-year-old academic said, “Even when I was about five, I’d have hallucinations about very adult things, like war, for instance. They came to me as stories or as fragments. These were my secret pleasures, or pains. I have grown up with them, and these have enabled certain intellectual and creative journeys.”

When she began talking about childhood hallucinations that were located in Kashmir, I asked if she had ever been there. “I have never been there,” she confessed. “I wouldn’t religiously follow the news either. I didn’t know a lot about the place, but Kashmir would be an ingredient of my hallucination, and that ingredient was in itself complete and rich. It didn’t require an outside verification of facticity.”

As I heard K speak, I could sense that her secret world had an elasticity of sorts. It stretched enough to make visible the invisible. When I asked her to describe it for me, she simply said, “I very much like my multi-layered world in which I don’t have to depend on a fact-based construction of what the world is. I like being free of that evidence-based theory of the world.” She had thought through her abandon.

Children are quick to talk about their fantasies, but K kept her hallucinations closely guarded. “Even as a kid I knew that if I started talking about these things, they would get me into trouble. There is an internal world and an external one. And for most of my life, I have lived without connecting the two.”

In December 2013, though, these worlds collided in Cairo. “I was visiting a friend who was stationed there. I think it was the night of December 30. We were all drinking at my friend’s house, and suddenly I thought I saw his mother. She had died a few years ago. I started howling. I wasn’t worried about the fact that my friend was looking at me with concern. The reason I was howling was because the experience was so intense. That was the first time something had happened this publicly.”

Despite these outer repercussions of her inner world, K remembers her trip to Egypt as “memorable”. She said, “I felt I had a past-life connection to the Middle East.” Because of the incident at her friend’s house, however, she felt troubled. “It now became difficult to separate my world from the real world.”

Writing her PhD dissertation in the US at the time, K found her then partner was supportive. “He never refuted my hallucinations outright. He never said I was imagining things,” she said. K was given a prescription for anxiety disorder. “I didn’t know I was having a psychotic episode.”

In 2014, when K returned to India, effects of her psychotic break lingered. “I was still paranoid, still thinking people were stalking me, still afraid my computer was being hacked. It was doctors in India who first used the term ‘psychotic episode’. No one had said ‘schizophrenia’ out loud, though. It’s just that my harmlessly low dose of anxiety medication was replaced with medication a lot more potent.”

It was doctors in India who first used the term ‘psychotic episode’. No one had said ‘schizophrenia’ out loud, though.”

Mirroring my mania

In 2013, I worked for a national newspaper. Suddenly gripped by mania, I began thinking that my every online utterance was being monitored by intelligence agencies. I began thinking that the white Ambassador parked in my lane was tailing me wherever I went. Listening to K talk of her hacked computer, I was reminded of my own paranoia. Our psychoses, I felt, had a few symptoms in common.

Studying in Sussex, in 2009, I had, for instance, interrupted my education to impulsively take a flight to Delhi. My mania had made me believe this dramatic gesture will free me of familial restraints. Unknowingly, I had only made it easier for my parents to hospitalise me. K suffered a similar fate last year. “I was in Toronto. I wasn’t finding an academic job in Canada or the US. These were all triggers that made me believe people were out to kill me. I also believed my family was implicated in this grand conspiracy. I bought a ticket at the airport and flew back to Delhi. I obviously did not let anyone know.”

A few days later, when K was admitted to the schizophrenia ward of a Bengaluru hospital, she was heavily medicated for first leg of treatment that lasted about ten days. She said, “I was sleeping a lot and I started having the most brilliant dreams. I would not trade those for anything. All this suffering, this turbulence, I felt, was worth it. It was the price I had to pay. These aren’t the kind of dreams people get to have every day.” 

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In those seven to ten days, K felt she was in touch with spirits. She believed she was able to recall experiences from past lives. “So many things from the Middle East came back.” She had vivid dreams about wars. K told me, “I had spirits trying to tell me things, and I thought it was only my body or mind that is porous and malleable enough for that kind of exchange to happen, which is why all this happened to me.” K wasn’t trying to give her suffering positive spin. For her, this experience was vital.

One of the most vivid dreams K had saw Krishna narrate to her the Mahabharata from his perspective. “He told me the Mahabharata doesn’t give him any credit, so he was telling me the story from his point of view.” I was fascinated. I told K I too would return to the Mahabharata when I experienced psychosis. Though I never conversed with Krishna, I believed I was him. K was intrigued by this parallel.

She asked, “What do you do with the residue of your experience once your mania subsides?” I answered that guilt is the residue I’m usually left with. “I’m clearly not Krishna.”

It felt like K was trying to console me when she said, “But not everyone has such an experience.”

My disbelief wouldn’t shake. “But every bipolar patient who is manic invariably thinks he or she is God.”

K then said, “For me, the residue is so rich. After this episode, life is different because I am. I believe the visions I saw were encoded.” K thinks of visions as “breadcrumbs” that always lead her to another clue. “They are a gift.” 

The keeper of the worlds

For K, the schizophrenia ward “was actually quite a fun place”. She said, “Everyone was in different worlds. There was this young 20-year-old boy, I used to speak to. He used to have 3D hallucinations. Once I started talking to him, I began having 3D hallucinations too. It was like being in an immersive video game.” Patients apart, K liked talking to doctors too. “But I did create a fuss once, and they gave me something very strong to calm me down. Once that happened, the recovery became much faster.”

Though K’s diagnosis of schizophrenia came late, she told me that genetics made the conclusion simple. “My grandfather used to have some form of schizophrenia. It’s a broad spectrum, so people can experience it differently. When they diagnosed me, they quickly traced the affliction back to him.”

According to a 2012 study carried out by professors at the University of Liverpool, severe abuse in childhood may treble the risk of schizophrenia. Though K did not recall having suffered severe childhood abuse, she did say that during her episode last year, “I felt I may have experienced or witnessed sexual abuse in a past life.” Oddly tangible, the experience does inform some of K’s realities.

Experiencing the world in its more plural form does not terrify K. She often seems dazzled by the abundance of the worlds she inhabits. “I don’t see schizophrenia as a disease. I see it as a condition,” she said. “The medical term is just used to refer to people with a condition who are living in multiple worlds.” For K, being immersed in her “worlds” is a fact as true as her eating breakfast in the morning.

K, though, can be quite the pragmatist. She knows that for her, there might perhaps be no recovery. “Schizophrenia is a condition that can be controlled, not cured. Medication is something that calms me, that helps me sleep. It does help me cope with regular life.”

K explains the life of mild hallucinations. “They are more like sensibilities,” she explains. “When we listen to music, we are a certain kind of person, and when we fill up our tax forms, we are a different person. It’s a different intensity of living in the world that you balance with having a job or filling out tax forms. But if I were to constantly have the kind of triggers I did last year, I’d be quite worried.” Despite its disruptions, K insists schizophrenia is not a disability.  

“I think of myself as a super able person. During my last episode, I was finishing work on a book. During my first episode, I was finishing a dissertation. I finished both those things. In academia, the disabled usually need their deadlines extended. I’ve not needed any such extensions.”

There is one question K gets asked periodically—how do you balance the internal life of hallucinations and dreams with the external life of responsibilities and obligations? “It’s something that can be done. People are doing it.”

After her return from hospital last year, K was bothered by how members of her support system had begun to look upon her as a patient. “I don’t blame my family or my partner for being paranoid about me, but that created a bit of irritation and conflict. If I’m not eating enough, they think I’m getting an attack. If I get a cold, they think I’ll have another episode.” K says caregivers need to be sensitised: “Families must be shown how to give care, how not to muzzle the patient or overwhelm themselves.”

A new job means that K will soon be changing city. She has been permitted to live alone. She told me, “I’m more at peace with my own suffering as a cost of receiving access to other worlds. They come to you at price. You see scary things, yes, but at the end of it all, you see a world that is beautiful, one that is not accessible to others.” K, I felt, could sometimes predict my responses. Perhaps thinking my silence was incredulous, she laughed. “It might seem like I am advertising schizophrenia, but I am not.”

There’s one Shakespearean quote K likes in particular. When Hamlet starts seeing his father’s ghost, he tells his friend, “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophy.” At the end of our conversation, I felt a bit like Horatio. My philosophy didn’t stretch enough to include all of K’s beliefs. I liked my Buddhism, for instance, but I hadn’t internalised its theory of rebirth. When lucid, I chose rationality over mysticism. K was different. She taught me to respect my mania better. Though dangerous, it was, at some level, also a triumph of the imagination.

Shreevatsa Nevatia is the author of How to Travel Light, a bipolar memoir.

This article is part of Second Thoughts, a series on mental health in India. Write to us here: secondthoughts@huffpost.in

If you or someone you know needs help, mail icall@tiss.edu or dial 022-25521111(Monday-Saturday, 8am to 10pm) to reach iCall, a psychosocial helpline set up by the Tata Institute of Social Sciences (TISS).