Mind Snare

MILLIONS OF FAMILIES ARE STRUGGLING WITH PSYCHIATRIC ILLNESSES WITH ALMOST NO SUPPORT. DIVYA GUPTA SURVEYS A LANDSCAPE OF INTENSE DESPAIR — AND HOPE

GIRL, INTERRUPTED 35-year-old Puja with her 73-year-old mother in her Chandigarh home. Puja has multiple and severe psychiatric disorders. Her sister Garima has been her primary caretaker for the last 13 years Photo: NAVEESH TEJPAL

A GAUNT, WIRY man, 69-year-old OP Asija could well have been one of thousands of anonymous retired officers and white collar workers leading a happy and genteel life in Chandigarh. A former Indian Navy officer and father of two sons, Asija’s own dream, in fact, was to spend his retirement writing books about spiritual growth. Instead, he works frantically every day, trying to sell insurance.

Asija’s life has been a private hell for decades. His younger son Dhiraj — now 34 — was diagnosed with mental retardation and severe psychosis in 1991. Soon after, his elder son Hitesh, now 37, began displaying overlapping symptoms of mental depression, paranoid schizophrenia and obsessive-compulsive disorder. It was a crushing blow. Asija retired in 2000 and has spent over Rs 25 lakh in just the last decade on his sons’ medical expenses, emptying out his pension and provident fund. “If I didn’t have this insurance work, I would have been a beggar in someone’s house,” says he. “But you can’t count our burden in terms of money.”

His remark is a searing understatement. Asija has spent the last 20 years traveling the ends of the country searching for reliable and affordable treatment for his younger son. He has admitted him in government mental hospitals in Thane, Hyderabad and Amritsar. Each time, it meant watching his “once good-looking son” reduced to sub-human conditions. After two-and-a-half years in Thane, where he developed severe scabies, his son had pleaded, “Throw me out of your house, Papa, but please take me out of here.” After 13 months in Amritsar, it was Asija who pulled his son out when a hospital doctor himself said, “Take him away or he’ll die.” After 10 years in Hyderabad, the hospital sent Dhiraj home though Asija had paid Rs 10 lakh for a lifetime admission. He is still fighting this in court. “I don’t know how God gives me the strength to go on,” says he, “Any ordinary person would have committed suicide.” Then he voices what gnaws at him the most. “What will happen when I’m gone? How will my boys take care of themselves?”

Asija’s heartbreak stretches back over three decades. Born in 1976, Dhiraj had first showed signs of trouble when he was seven and still couldn’t do his alphabet. “The doctors told us he’d be fine, so I just did his homework for him and thought it would all work out as he grew up,” says Asija. But it just kept getting worse. At 13, Dhiraj was thrown out of DAV Public School in New Delhi for disruptive behaviour. When Asija and his wife took him to the psychiatry department in Safdarjung Hospital, he scored 65 on his IQ test which reflects retardation, but Asija refused to accept this. Soon after, however, Dhiraj disappeared for seven months. When he suddenly returned, his body showed many injuries. He was violent and moody and even tried to strangle his mother. Asija fears he was sexually abused while he was gone. Yet it would be another two years before he’d be adequately diagnosed. Today, out of sheer desperation, Asija has admitted Dhiraj into a destitutes’ home he does not want to name because it is meant only for orphans and people of low-income. His elder son Hitesh still lives at home under heavy medication. He cannot hold down a job and is sometimes aggressive but not violent. He is aware of his illness and can speak of it, yet spends hours in the washroom obsessively washing his hands, or repeatedly breaks away from conversations to go and spit. Asija’s wife developed cancer in 2005 — Asija suspects as an outcome of stress. He has had two angioplasties. And they have got used to being social pariahs. “We had become outcast in our own family a long time ago,” says he quietly. And so circle back to the question that gnaws at him the most, “What will happen to my boys when I am gone?”

Asija and his wife are not the only ones asking this despairing question. A few kilometers away from Chandigarh, in the satellite town of Panchkula, 39-year old Garima, a calm, affectionate woman, lives with her frail 73-year old mother and sister in a rented apartment, “captured”, to use her words, “like a frog in the well in my own house.”

When you first step into this house, everything seems normal. But barely a few minutes into the conversation, strange noises erupt from a room close-by and suddenly a tall, thin figure with disproportionately large arms and legs emerges, flaying her limbs about and leaping with hyper energy. She speaks in an unintelligible garble, combined with a severe stammer. The immediate reaction is sheer horror, even some fear. But Garima pacifies her younger sister Puja, now 35, without flinching. “Puja is not in a hyperenergetic state just a few times a day or only when there’s a stranger in the house — she is like that all day,” says Garima, who has spent the last 13 years of her life pacifying, feeding, washing, walking and talking to her sister.

BABEL’S WAITING ROOM The Delhi-based Institute of Human Behaviour and Allied Sciences which sees an average of 800 psychiatric patients a day. Almost half come from rural India Photo: VIJAY PANDEY

HOME FOR THE BLUES Residents of Pingalwara, a charitable trust for destitutes with physical and mental disabilities. It houses 200 people in this Amritsar branch Photo: NAVEESH TEJPAL

BREAK TIME Male residents of Pingalwara’s Chandigarh branch as they wait for lunch. Pingalwara’s five branches are entirely run on donations Photo: NAVEESH TEJPAL

Puja was first diagnosed with mental retardation in 1995. A year later, she had her first visible schizophrenia attack. She stopped eating; she’d hear voices; act fearful as if there were robbers in the house. She’d sit alone in a room, crying, plugging her ears with her hands and saying she wanted to die. The family took her to the renowned PGI Hospital in Chandigarh. The visits continued for five years. She received 43 rounds of electric shock therapy in a year-and-a-half. Garima recalls those visits with brimming pain. “We admitted her 6-8 times and cried every time after going there. The nurses there restrained her and gave her medicine. But they wouldn’t take care of her, take her to the bathroom, feed her or clean her. At home, we keep her like a flower,” says she, breaking down. Garima’s father died of a heart attack in 1997. (He used to hate watching his daughter being restrained.) Garima’s other two sisters are married. Garima has remained single.

Yet she has never thought of institutionalising her sister. “How can we?” says she. “What if something happens to her there, and she’s taken advantage off?” It’s a common concern. According to A Cry from the Darkness, a study by NIMHANS and Syracuse University, one-third and, sometimes as many as three-fourths, of women with serious mental illnesses report a history of sexual coercion. And so, Garima has preferred her frog-in-the-well existence. She recently left her house for the first time in years for a 3-day yoga training course. She came back to a place she could barely recognise. “It was a big mistake,” says Garima. “Everything was strewn all over. You couldn’t take a step anywhere. And Puja hit my mother a lot. At her age, you can imagine what that must have felt.”

Doesn’t she miss having a partner of her own or dream of fulfilling her own life, you ask. “I feel I’m on the right track by caring for my sister, so God must have something good in store for me,” Garima says. “I don’t think of the past or future. I just think of how the present situation can be improved. If these are the last days of her life, then they should be easygoing, and if there is a possibility that she can improve, then I want to know how and where.”

How? Where? Whom to turn to? What will happen to our loved ones when we are gone? These are not just questions Asija and Garima are asking. They are questions millions of despairing Indian families are asking themselves every day. The fear of social stigma and absence of medical and rehabilitative infrastructure has shrouded mental illness in India in a kind of conspiracy of silence. But it is a dam waiting to burst. Just nudge it and countless stories pour out in hushed whispers and low tones, behind drawn curtains and closed doors. Stories of private hells flowing everywhere beneath the social radar. Each one riven with pain, bewilderment, extreme violence and extreme personal sacrifice.

Yet only the statistics can fully describe the terrifying landscape of mental illness in India. Here are just a few: According to the Ministry of Family Health and Welfare, India currently has an estimated 65 million people suffering from mental illnesses, ranging from sub-optimal functionality to being in a sheer vegetative state. Many activists claim this is an extremely conservative figure. Charting global trends, a staggering WHO study in 2001 suggested that as many as one in every four Indians suffer from some sort of mental illness at any given point. This does not include an additional 13-15 percent of “sub-syndromal” population — people either on a downward slide or who repeatedly display mild to moderate symptoms of mental disorders but have either not enlisted for medical help or never been diagnosed. Another WHO, World Bank and Harvard University report predicts that by 2020, depression will be the leading cause of the global burden of disease, overtaking cancer and cardiovascular diseases. And according to the National Crime Records Bureau, in 2008 alone, mental illnesses resulted in 8,699 suicides in India, far exceeding the number of lives lost to the Naxal conflict — “India’s gravest internal security threat” — over two decades.

But is it not just the number of people suffering from mental illness that is staggering. The corresponding figures for their care and rehabilitation tell an even more frightening story. The most startling figure is that there are only 3,500 accredited psychiatrists for a population of one billion people in India. That’s just three psychiatrists per one million people here, compared to 100 per million in Australia or 150 in other developed countries. The numbers are equally depressing for clinical psychologists, nurses and medical social workers: Five psychiatric nurses, three clinical psychologists and three social workers per ten million people (WHO).

That’s just the human resource vacuum. The physical infrastructure available for those struggling with mental illness tells its own story. There are only 43 government-hospitals for the mentally ill in the country (as opposed to about 1,300 jails). That’s 20,000 beds for an estimated 65 million mentally-ill people. Of these 43 hospitals, there’s only one full-time government psychiatric hospital located in Amritsar for four states and one union territory — Punjab, Haryana, Himachal Pradesh, Uttarakhand and Chandigarh. And just one hospital serving the entire Northeast. As Vikram Patel, a Goa-based mental health expert, says, “The national figures are bad enough, but the regional inequities tell an even more frightening story. The number of psychiatrists available in states like Jharkhand and Bihar, for instance, is abysmal compared to Maharashtra which alone has four government hospitals.”

Photo: NATHAN ‘It’s A Road Block, Not A Disease ’ PUNEETHA, 40, SCHIZOPHRENIA SURVIVOR Supervisor, Daycare Center, The Banyan, Chennai WATCHING HER SIT on a park bench in Chennai with a warm smile and clear thoughts, it’s hard to believe that Puneetha, the daughter of a security guard, has battled schizophrenia for 10 years. “It’s a fantasy world devoid of real anchors. It’s easier to withdraw than cope with reality,” she says, in impeccable English. Puneetha was 23 when her mother committed suicide after suffering from spiralling hallucinations and schizophrenia-induced paranoia. Her shocking death left the family with a leaching sense of bewilderment. “We knew she wasn’t her self, but weren’t aware of any mental illness,” Puneetha says. Soon, she’d be spiralling down herself. Puneetha’s own delusions began four years into a love marriage with Suresh, a drummer in a local band. They were triggered by a concern over his late working hours. Puneetha’s anxiety surged, after one of his friends died from alcohol consumption. She had to be hospitalised. Neighbours whispered about her illness. “Educated and uneducated alike treated me with contempt,” she says. Over the years, Puneetha recovered intermittently but suffered two relapses. She stopped her treatment; her behaviour became bizarre. She would smash things, she slipped away to Kerala, tried to convert to Christianity, turned violent, was beaten and picked up by the police. She ended up on the streets where her husband tracked her down. “He lost his youth in this battle,” she says. Puneetha’s turning point came when Suresh had her involuntarily admitted to a rehabilitation centre in Chennai where no one could visit. “I missed my daughter and didn’t want to lose her the way I’d lost my mother,” Puneetha says. Solitary confinement helped her realise she had an illness that needed treatment. It was Herculean, but she recovered slowly, and began to work as a teacher and later at an IT consultancy. But there was a fire burning in her belly, she says. She returned to The Banyan, a Chennai-based institutio - nal home for destitute women with psychiatric disorders that she’d once attended. There she rose to a supervisory role and now manages up to 15 patients a day. She also assists recovering patients with employment placements. Helping others has given Puneetha self-confidence. “Mental illness is not a disability but a roadblock,” she says in a peachy pink sari. “You just have to drive around it.” Rising to go, she quotes the rabbi, Hillel: If I am not for myself, then who will be for me? And if I am only for myself, what am I? And if not now, when?

And that’s just the urban story. India’s 11th Five-Year Plan has a Rs 1,000-crore budget for mental health programs. But by the admission of health ministry officials themselves and news reports, there is an astounding 80 percent treatment gap in rural India. It’s also key to remember that this Rs 1,000 crore is just 1.5 percent of India’s Rs 21,113 crore health budget (2009-2010), while other countries spend at least 12 to 18 percent of their health budgets on mental health.