Demons In The Mind

There's life after schizophrenia—with help from support groups—for India's nine million patients
Demons In The Mind
outlookindia.com
-0001-11-30T00:00:00+0553

WHEN the blues first hit Mahesh Luthra, a strapping 19-year-old high-schooler in 1993, the doctors did the regulation brain scans, found nothing amiss and sent him back home. Soon after, the gawky withdrawn teenager woke up one frosty morning hearing what he thought were voices in his mind. "The voices said something abusive," he recalls. Two years later, Luthra, living in a haze of anti-depressants, flunked exams and sparked off family brawls, was diagnosed as a schizophrenic. Still on a daily 2.5 milligramme pill for the mind, he left Asha, a half-way home in Bangalore, last month after a year-long treatment and rehabilitation. "I think I've come out of the darkness," he says. "I'm not as smart as I used to be, but I'm more sociable."

Ravi Shankar has also been to hell and back. Only, it's taken him 12 long years. The Bangalore-based 33-year-old son of an army officer remembers having delusions of grandeur, enduring ragging and suffering a nervous breakdown while he was studying in engineering college. He dropped out soon after. "I felt depressed, suicidal and lethargic. I had an ego problem, so I often skipped medication," says the rakish young man. Popping pills and fighting side-effects, Shankar spent the next 10 years at home and rehabilitation battling the demons in his mind. Meanwhile, his gritty mother went on to form India's first parent-support group for schizophrenics. "I feel better and look forward to a better life ahead," he says. Despite a 250 milligramme-a-day medication, Shankar has begun working in a printing press, six days a week. "There is life after schizophrenia. I've just started realising it," he says.

Evidence of such awakenings abound all over the country. Take R. Rajagopal from Chennai, for example. He had his first attack 22 years ago, when after picking up a degree in commerce he nearly jumped off his third floor apartment. "I got scared and climbed back," he says. Over the next decade, he roamed across the country in the darkness of his disease, meeting doctors, yogis and shamans for help. Five years ago, he turned up at the Chennai-based Schizophrenia Research Foundation (SCARF), a non-profit voluntary organisation for treatment and rehabilitation. Now, on a four-pill 250 mg a day medication, Rajagopal works at SCARF's vocational training centre for patients. "I feel better," he says. "The voices still return in my mind, but I am beginning to win them over by work, work and work."

Finally, Indian patients are beginning to know there's life after schizophrenia—and are living it. Making it largely possible is a slew of exclusive rehabilitation, half-way and long-stay homes run by dedicated professionals in southern India, which are showing the way to the rest of the country and inspiring psychiatrists to emulate the inspiring trend and put patients on the road to recovery. At Bangalore's spanking clean 22-bed Asha, for example, patients bond together in cosy environs, and through a structured regimen every day—making beds, bathing, cleaning up, taking morning walks, yoga, maintaining house, simple things that a schizophrenic forgets totally. Chennai's pathbreaking SCARF, a World Health Organisation (WHO) collaborating centre, has treated over 4,000 schizophrenics in cities and villages, found jobs for 82 of them, reintegrated 165 women patients into their families, engaged over 300 patients in their efficient work units and runs two half-way homes and a day care centre. And at Bangalore's Medico-Pastoral Association's 20-bed 'hostel', patients—engineers, bank officers—under medication actually go to work.

Importantly, more and more people suffering from this most fiendish of all mental diseases are coming out of the closet. At Bangalore's world-class National Institute of Mental Health and Neurosciences (NIMHANS), a third of the daily 300 follow-up, and 65 new patients of mental illness are schizophrenics. This in a society where sordid myths are built around afflictions of the mind. More importantly, patients are being led by their families fighting the taboo. This, say psychiatrists, is critical, because a large number of India's estimated 9 million schizophrenics actually waste away untreated. Reason: families consider its atypical symptoms of social withdrawal and paranoia as behavioural rather than a clinical problem (see box). "The sheer fact that our people are telling the world that they have a mentally ill member in their family is a major breakthrough," says R. Thara, psychiatrist and director of SCARF.

It sure is. To begin with, credit for this should go to the shrinks. This when you consider that India has a paltry 25,000 psychiatric beds and a mere 3,500 qualified psychiatrists. For one, docs have effectively debunked the popular schizophrenic stereotype of a split personality, a kind of Dr Jekyll and Mr Hyde. The disorder has nothing to do with a 'split personality'. Making its appearance typically sometime between the ages of 15 and 25 when the frontal lobes of the brain are maturing, schizophrenia is simply a brain disease caused by a biochemical abnormality. Shrinks have also exploded the once-widely held theory that parents, especially a detached, schizophrenogenic mother, was to blame for the disease—a message sent out clearly to patients and their kin. Also, that high stress led to schizophrenic behaviour. The reality: stress doesn't cause the disorder, but could easily trigger off the first attack.

Now doctors are holding out the abundant hope of recovery, helped by a slew of new drugs with minimal side effects and available at a fraction of the price of their international versions. "Hundred years ago, it was thought that less than 10 per cent of patients could recover from this illness," says R. Srinivasa Murthy, dean of NIMHANS. "Now, for a large majority, there is a complete recovery."

HELPING this become possible are, finally, the parents of schizophrenics. For years, shrinks have been crying hoarse that treatment of this complex brain disease straddles medicine, psychotherapy, social skills training, vocational rehabilitation, behavioural therapy—and family support. In a country where 80 per cent of schizophrenics are brought to the doctors by their families, parents need to come out in the open, beat the stigma, bond with other affected parents and build a supportive web around the patient.

 It works wonders as Bangalore-based Nirmala Srinivasan discovered four years ago. Sitting and despairing at home alone with a schizophrenic son, she went out one day in 1994 and put an advertisement in the local newspaper: 'To families with cases of mental disturbances, especially schizophrenia, we'd like to start a family support.' The response was overwhelming: some 100 people wrote back—shrinks, parents, grandparents. "Our first meeting was very emotional," remembers Anandi Rao, chairperson of Amend, India's first self-help support group for families of the mentally ill. "We all broke down when we spoke about our withdrawal from society as parents of schizophrenics, our loneliness, how we delayed treatment not knowing it was a disease. " Today Amend has 58 members—the membership peaked at 83 sometime ago—who meet regularly, offering support and information, inviting doctors and psychologists and rooting for latest drugs. "Families have to change and reinvent themselves when dealing with schizophrenic children," says co-founder Srinivasan, who gave up teaching sociology at the Indian Institute of Management to look after her son.

This remains a problem. A problem that is evident in the fact that a clutch of Indian family-support groups are actually psychiatrist-driven. "Families largely still don't want to come out on their own. We sometimes have to force them to do it and break the stigma in the neighbourhood," says Sukanya Devanathan, psychiatrist and founder-member of the Chennai-based Family Fellowship Society For Psychosocial Rehabilitation Services. The family support group which came up five years ago today has some 65 members. Four years ago, at a seminar, five family members actually went onstage to pour their heart out to a stunned 150-member audience. "Schizophrenia rehabilitation is a community effort. Families need to be involved much more in the treatment," says Radha Shankar, a Chennai-based psychiatrist who kick-started the support group Asha in 1989. Today, Asha has 160 life members on its rolls.

NOT surprisingly, the family support movement for schizophrenics seems to be gaining momentum across the country. One reason is that, with the increased awareness of the symptoms of schizophrenia, families that were living with an undetected patient at home have suddenly woken up to the implications and have begun asking questions about the disease. A sampler, culled from psychiatrists around the country: Is schizophrenia caused by faulty eating habits? Or a brain injury? Is hot weather in India to blame? Or is it hereditary? Will getting the patient married solve the problem? The answer to all these posers is an emphatic no. Doctors say schizophrenia is essentially caused by disruptions in brain chemistry, and does have some hereditary basis—children of schizophrenic parents have a 10 per cent chance of getting affected, as compared with 1 per cent chance of an average child.

To clear the air, fix the stigma, and share their experiences with schizophrenic patients at home, affected families, social workers and motivated doctors in Thiruvananthapuram, New Delhi and Pune are bonding. They now plan to open up more such family support groups. "It is a dire need of the hour for the patient and his family alike," says Murthy.

Before it is too late. Listen to this terrifying tale of . Raghavan, who holds a masters degree in science from Florida Atlantic University and who is also a bachelor in technology from IIT, Mumbai. The 42-year-old engineer, who suffered his first attack after getting a $2,500 a month job in San Francisco and returning to India, moves from one rehabilitation centre to another these days, unable to adjust, and apparently shunned by family and friends.

"I shouted at my relatives, I abused my friends, and I lost them forever," he says. "Now I would like to be adopted by a kind and good family. Will anybody take me?" Raghavan, who had put in a working stint with a public sector undertaking before suffering a relapse, says he "argues with God all the time, because he talks to me in my mind".

But there is a silver lining in the fact that people like Raghavan, Luthra and Shankar are now describing their ordeal with remarkable candour and are fighting the disease. Moreover, there's much new hope on the medical front too. Beginning with the drug Thorazine (chlorpromazine) in the '50s which eclipsed the brutal lobotomy, electroshock and insulin shock treatments of the initial years of treatment, the pills for the mind have been getting more and more effective. Tiding over Thorazine's debilitating side-effects—sluggish gait and dulled emotions—a newer drug called clozapine with fewer side-effects has become a favourite with psychiatrists. Now trials of the latest schizophrenia wonder-drug, olanzapine, which in the West claims negligible side-effects, will commence in India. "But the very important thing," says Murthy, "is going to the doctor as soon as is possible."

Otherwise, it could turn out to be a long nightmare of insanity for the patient. Like the case of 41-year-old N. Ram—a schizophrenic since the age of 22 after he flunked his medical entrance exams—who entered a rehabilitation centre three weeks ago. "Please help me to a speedy recovery," the gaunt man, hands shivering, tells his doctor. "I cannot fight with the devil in my mind any longer." There are some 30,000 new patients every year who, like Ram, are fighting the demons in the dark attics of their mind. But there's also never been a more hopeful time for Indian schizophrenics.

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