(Maya Mirchandani is Senior Editor, Foreign Affairs- NDTV)
"I can never feel the sense of being a part of this world. I never will. No matter how close I am with people there is a sense, there is a part who feels very unbelonged, I don't know where this comes from but I do." (Watch Video)
Meet Reshma Valliappan; Resh to those who know her. Reshma is an artist, an advocate for the rights of those who suffer from mental health disorders, and a first-time author of the book "Fallen, Standing- My Life as a Schizophrenist" - a memoir of years of struggle that began when she was 14 years old - a rebellious and difficult teenager on the surface- and finally, led to a diagnosis eight years later while she was in counselling for anger issues and drug addiction.
Reshma's honesty is refreshing, but brutal. 'Schizo' means split, 'phren' is the mind in Greek. So psychiatrists describe schizophrenia as a complete break from reality. But Reshma describes it as a permanently broken heart. She tells an audience at her book launch in New Delhi that her heart has been broken over and over by the voices in her head, broken by the judgment and lack of understanding or compassion that she endured through the years by family, friends, schoolmates and total strangers.
On the spectrum of mental health disorders, schizophrenia is at the extreme end- the most grave. Hallucinations and strange voices crowd the mind, the line between dream and reality blurs to oblivion and chances of self-harm are the greatest. Reshma has survived several suicide attempts, many of which are detailed in the book. She marvels at how none of them worked, but is honest enough to accept that a part of her wants to live and embrace life. After one of her more recent attempts, Reshma decided to go off her medication. The drugs used to treat her condition were known to cause thoughts of suicide and depression in initial stages of use. For someone with already suicidal tendencies they ended up enhancing them. As a result, Reshma ended up in the critical care unit of a Pune hospital after an overdose of her prescribed medication.
While the jury is out over whether medication is useful or not in the treatment of schizophrenia and other mental health disorders, many doctors believe it should maintained at a minimum dose. However, Reshma has - under the guardianship of her psychiatrist - focused on alternative, art based therapies, counselling and learnt to watch and recognize her own patterns of behavior extremely closely. As a result she comes across as perhaps more self aware than many of us. For the most part, she is now able to recognize many of her symptoms- however difficult they may be and thereby try to control or work around them.
The title of her book is revealing in itself. "When you say schizophrenia its automatically a taboo, a mental illness, a disease. Schizophrenic is an adjective. But I want to embrace it, I don't want to deny it, because this is how people identify people like me. They give it a stamp so I've said fine - if that is what you are going to call me, I will take that label and own it. The way you are an artist, I am an schizophrenist. Now you deal with the definition you have given me because this is mine, " says Reshma.
Here's an example of an early, and deeply scarring experience Reshma had at the age of 14: While living in Malaysia with her parents she was taken to a local psychiatrist at the suggestion of her mother's friend soon after she had first attempted suicide, run away from home and cropped her hair to disguise herself as a boy. As she recounts the incident, Reshma says she was left confused- on the one hand she was happy that he seemed to understand her experiences of being unhappy, not being comfortable in her own skin but couldn't find the words to tell him how wrong he was when suggested she was a "transvestite- a boy hiding in a girl's body." Her parents have since apologized to her for putting her through that early experience and her father put an end to any further meetings or communication with him.
Worldwide, one per cent of the population is diagnosed with Schizophrenia. But diagnosis of mental health disorders is far from easy. Doctors say they only have the patient's and family's accounts of a history of their behavior, and their own clinical judgement to rely on. Dr Kushal Jain, a psychiatrist at Delhi's VIMHANS Institute says everyone goes through some amount of mental or emotional distress at some point in life. What distinguishes the need for help is just how deep the distress is and how it impedes one's role functions- as a child or a parent, a member of the community, a working professional or a student. For schizophrenia the distress is caused by the way information is processed, the way stimulus is interpreted. He says there will be "hundreds of people who are predisposed to developing schizophrenia but they don't because they are not exposed to that amount of stress. So pinpointing a reason for schizophrenia is often very difficult. In today's world even if you could pinpoint that a certain amount of stress may precipitate a psychotic breakdown or schizophrenic illness, you can hardly do anything." While the medical community agrees on a genetic/ biological predisposition to mental health disorders like schizophrenia or psychosis, the clincher is often the environment we live in. It poses its own set of challenges that each individual deals with differently.
To make matters worse is the stigma around acknowledging the suffering. First, stigma for the person who is suffering, and then stigma by extension. Dr Jain says families who know that a member in their household needs some intervention either through counselling or medication are hesitant to bring them in because they fear this. "That is the reason for 20 years, they have not treated them," he says. Reshma echoes this very real hindrance. "Even in my case there were family members who rejected me or rejected my family. They didn't invite us for any functions because there was a schizophrenic at home," she says.
As she and her family came to terms with diagnosis and treatment over the course of a decade, Reshma's problems mounted in 2011 when doctors detected a benign tumour in her brain. The surgery for its removal has left her with scar epilepsy... that occasionally causes seizures nine years after her original diagnosis.
While writing her book- that's written by combining emails to her publisher Ritu Menon at Women Unlimited, and essays in which she details stories from her youth, Reshma says she's lucky she had a habit of keeping diaries, letters and journals over the years. "I broke every time I sent a letter to Ritu. While writing the book a lot of unknown memories surfaced. But the seizures led to a disassociation and I would wake up and I wonder who the hell wrote this, or did this really happen to me? I had to make peace with these memories. Sometimes I thought they were just fragments of my imagination, and asked myself if I was fantasizing. But thankfully I have always maintained dairies, letters and journals that allowed me to connect, so I went back to them," she says.
To you and I, Reshma is bright, articulate and full of energy. She earns a living through her painting, writes articles, is studying for a degree in Religion and is an outspoken advocate for the rights of those diagnosed with mental health disorders. She founded The Red Door - a peer support group for anyone who wants to talk about or suffers from mental health issues. But she also knows all too well that encouraging others to come out of the closet so to speak is a double edged sword. On the one hand, without open conversation the stigma and taboo around treating mental illness just like any other illness that can be treated is impossibly hard to break through. But on the other , being open puts the sufferer at risk. Legally, with her diagnosis Reshma cannot vote, cannot marry, cannot sign a contract, cannot hold public office, has no say in her treatment and can be held against her own will. This unfortunate reality of India's laws forces doctors to ask what incentives we, as a society, provide to those who need or seek help. Dr Jain says " The implication of coming out and disclosing the fact is sometimes more dangerous than the illness itself. We work hard to bring them back to reality, so that they can get back to normal functioning but what the society offers is nothing." He deals every day with families rejecting their own. As an example he talks of a patient who is currently enrolled in a PhD programme who fully comprehends her schizophrenia. But her husband and her in-laws, upon finding out decided they don't want her at home any longer even though her condition is controlled medically. " She tells me she was better of ill. At least then she was in a dream world. Here in the real world she says she is depressed and suicidal."
By her own admission, Reshma has come a long way with the help of whom she calls good, compassionate practitioners and people. She says the system is built on a foundation of "cruelty, stigma and torture" when what people like her need is care and understanding. "When I stand up for this belief, it puts me in trouble. Nobody likes being told what's right and I am there and I am saying you know what- I might have been violent and I can be aggressive, but I know what is happening in my brain. I know what is happening in my mind and who are you to tell me I don't deserve rights?!"
Today, the voices in Reshma's head come and go, but her own voice manages to rise above them. Through her book, Reshma Valliappan hopes others who suffer in silence will also find their own voices rising. Fallen, Standing shines a gripping and necessary spotlight on schizophrenia. This must read book is a triumph of her spirit in the face of years of stigma, judgement and isolation. A story that is too real for comfort sometimes, but holds up a mirror to show all of us exactly where we as a society must stand in order to provide the care, compassion, treatment and basic rights that people suffering from schizophrenia or any other mental health disorder so desperately need.
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