Mala had been in Bangkok for the three weeks, wrapping up a project in her capacity as a Montessori trainer and consultant, when she suddenly receives a phone call from her daughter in Malaysia.

Visha, aged 19, is weeping incoherently over the phone, and Mala’s heart constricts with worry and fear – this is Visha’s first time on her own.

“What’s wrong?” Mala asks, “What’s the matter?”

Amid her panicked sobs, Visha tells her that their entire apartment has changed, that someone has entered and rearranged all their things in new and confusing configurations.

She is afraid.

Mala pours out reassurances and makes sure Visha is calm and knows what to do next before hanging up.

As she dials the number for her sister in Petaling Jaya, to tell her to check on her daughter and to make sure she is all right, Mala can’t help but imagine the worst.

Mala is afraid too.

It is hard to imagine anything more terrifying than watching your child battle demons you can’t see or hear - and consequently, can’t protect her from. But after she got the call, Mala feared that there was more to it than normal teenage dramatics.

She immediately wrapped up her project and caught a flight back to KL. Her worst fears were confirmed the minute she opened the door. The apartment was a mess – Visha hadn’t bothered to clean or do the laundry – and Visha herself was worse.

Her hair was matted, her clothes were filthy, and she was skeletal from lack of food.

Even more worrying, says Mala, was Visha’s new habit of pacing up and down day and night, talking to the door.

Visha had begun to hear voices.

Mala knew immediately that she had to take Visha to a psychiatrist, although that idea didn’t sit easily with some.

Unforgettable experience

“The first thing her father asked me was ‘Why didn’t you take her to a normal physician? Why a psychiatrist?’” She shakes her head.

“I cannot understand people accepting behaviour they know is not typical for their child as normal.”

The first visit, says Mala, was an experience she will never forget. “The doctor took one look at her and ordered a series of tests – heart test, urine test, blood test. He told me, ‘It’s a miracle she’s still functioning’.”

Still Visha refused to play along. She admitted to no voices. She insisted she had an eating disorder. She also, much to Mala’s chagrin, asked for a pregnancy test. “She told the doctor she was pregnant,” says Mala. “She told him she’d been raped.”

This pronouncement left her mother in a daze. “I was shocked, I was confused,” Mala recalls. “How did this all happen? She was fine when I left, how could she have deteriorated so quickly in just a few weeks?”

At the psychiatrist, she got her answer: Schizophrenia.

The diagnosis was only the first step in their journey, as Mala discovered. For one thing, Visha refused to believe the psychiatrist or trust his recommendations.

She flushed her pills down the toilet (“I thought they were sleeping pills”), and spent night and day pacing furiously up and down the hallway. There were only two people in that apartment, but for Mala, it was feeling smaller and more confining with each day that passed.

“She had so many trust issues,” says Mala. “She trusted no one except me. All her problems, her thoughts – all of that was put onto me. We couldn’t leave the house because she was so paranoid. If someone even looked at her the wrong way, she’d be weeping and we’d have to go home.”

Thoughts of suicide

In her darkest moments, Visha confessed to having thoughts of suicide; the idea has haunted Mala ever since. “We hide our knives,” she says. “It’s the one thing I’m most afraid of.”

The DSM-IV estimates that approximately 10 percent of people with schizophrenia commit suicide and between 20 and 40 percent of people with schizophrenia make at least one suicide attempt in their lifetime.

The worst of it, says Mala, was that nobody else seemed to understand. “Her brother and sister would come by for a visit, or our other relatives would drop by,” she says, “But schizophrenic people are very good in front of other people.

“So people would come and she would be sitting like this, dressed up, speaking well, and they would tell me ‘Why you manja (pamper) her so much? She looks fine!’

“When really, just before they came she was crying and crying as though she wouldn’t stop. Old friends would drop in to say ‘hi’ and leave again without a care in the world. I can’t blame them,” she says. “It was a hard thing to deal with.”

Mala isn’t alone in feeling alone – a 2010 study comparing caregivers of schizophrenia patients from Malaysia with those from India showed that only 32 percent of Malaysian caregivers felt that they received adequate support from their families.

Another 30 percent felt that their relative’s illness prevented them from having satisfying relationships with their friends, and 40 percent of them felt depressed and anxious because of the patient’s illness.

“It was overwhelming for me,” Mala says quietly. “I needed a break.”

Still long way to go

We may be making some headway with the resources available to people living with mental illness, but we still have a long way to go to provide for those who care for them.

“When I first came back and we got our diagnosis,” says Mala, “I was so disappointed to realise that there were no support groups for caregivers, anywhere in Malaysia.

“In Singapore, yes, but not here.”

Determined to change that, Mala threw herself not only into helping her daughter recover and regain control of their lives, but to do the same for other caregivers too.

“I don’t work fulltime anymore, so I can monitor her medication and their side effects,” she says. “So I also devote my time to helping out at the Malaysian Mental Health Association.”

Alongside other caregivers, she helps train family members who are looking after loved ones with mental illness, creating and establishing their own support system as they go.

“I was very happy to come out and start talking to people about it,” says Mala. “I always tell my daughter, don’t look at it as a disability or something to be ashamed of. Look at it as a blessing!

“Tell the world. I can talk to you about it now because I’ve gone through it. It makes you a better person. It’s not karma, it’s not something bad you’ve done that you're being punished for.”

When one person in a relationship becomes the caregiver and the other becomes the cared-for, dynamics inevitably begin to change. The trick, Mala says, lies in making sure they change in the right way.

“It’s so tempting as the caregiver to take over, to take control,” she says. “We know best because ‘Dia gila, kan? (She’s mad, right?)’ But you can’t do that.”

On top of that, she says, came “helpful” suggestions from friends and relatives eager to provide solutions without understanding the problem. “They asked me to go to this Buddhist priest, that Indian priest, mandi bunga (flower bath) cleansing.

True recovery begins with patients

‘The spirits might have got into her,’ they said, or ‘It’s the Hungry Ghost month, something could have happened.’” They went for one or two of these spiritual remedies, but ultimately it proved unhelpful – “They just blessed her and prayed over her,” she shrugs.

“She wasn’t really into any of the other mumbo jumbo stuff, so we didn’t really go for that.”

True recovery, Mala says, begins when patients themselves are empowered to take control of it. “I always ask (Visha) what she’s comfortable with and what she wants, not force my own opinions on her.

Even though sometimes you want to. You hear people say ‘This guy is so good, he can cure her.’ But if she doesn’t consent, it won’t happen.

“When she sees a psychiatrist or a psychologist, I ask: Can you talk to her? Are you comfortable with her? If there’s no rapport, she could be the best psychiatrist in the world and it wouldn’t matter; she’s not meant for you.

“Even with her medication, she has to believe it will work, or it won’t.”

“There are, of course, always naysayers and detractors. “People tell me, ‘She’s too young to make these decisions,’ or ‘You allow your daughter to control everything!’

“But it won’t work if I try to control her. You have to take yourself out of the equation sometimes. You have to change your lifestyle to be patient-centred, your loved one-centred.”

The next step in Visha’s recovery plan, says her mother, is to cultivate some independence.

“Right now we have to remind her to do everything - eat, shower, exercise.

“She knows, but sometimes the voices overpower her. So the next step is to get her to do things by herself, being with friends. No more reminders.”

It’s not a step that Visha particularly relishes (“I have social anxiety,” she confesses), but it’s one that Mala thinks is crucial for both their sakes.

“You have to slowly build their trust, and believe in them,” she says. “They’re not doing this deliberately. This is not their fault.

“You must accept that your child has a problem, and they are not creating it - because when they sit and talk to the walls, it can look that way, before you begin to understand.”

“It’s challenging, and it’s hard work, and it can be done.”

This is just one of the many stories featured in GILA: A Journey Through Moods & Madness - an exploration of the landscape of mental illness in Malaysia through the personal narratives of patients, caregivers, psychologists, psychiatrists, volunteers and advocates. Get your copy now at GerakBudaya, or online at www.gbgerakbudaya.com.