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Bagus Utomo: Fighting the stigma of schizophrenia

JP/Dicky ChristantoFreelance librarian Bagus Utomo could never have conceived of the day when his older brother, Bayu, ran into the house shouting that he had just seen a ghost

Dicky Christanto (The Jakarta Post)
Jakarta
Mon, November 26, 2012

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Bagus Utomo: Fighting the stigma of schizophrenia

J

span class="inline inline-left">JP/Dicky ChristantoFreelance librarian Bagus Utomo could never have conceived of the day when his older brother, Bayu, ran into the house shouting that he had just seen a ghost.

That was 17 years ago, and was the beginning of a long, tiring struggle for the man and his family.

At first, Bayu was taken to a doctor near their home and given a prescription. After a few days of taking the pills everything seemed to go back to normal. Everybody, including Bagus, thought the shouting was just Bayu releasing stress.

However, in a few days chaos returned. Bayu began to shout and swear, deeply scaring his family.

This time, aside from visiting the same doctor, Bagus started to think his brother should visit someone with spiritual capabilities because he thought perhaps he was the victim of black magic, thus requiring a non-medical approach.

The hunt for a good dukun then began. They looked not only in Jakarta but in Serang and Sumedang in West Java.

But the search for a dukun was to no avail. His brother’s condition was deteriorating and he had to leave his job as a vocational school teacher.

At that time, Bagus reflected on what to do, as his entire family was in great need of consolation.

After years in the dark about what was going on with his brother, Bagus eventually had a look at the medical laboratory’s analysis of a CT scan his brother had. “Paranoid delusions” was the diagnosis, words that stuck in Bagus’ mind while accompanying Bayu to the doctor.

“I am a librarian and after reading those words — paranoid delusions, or widely known as schizophrenia — I started doing a little research. I discovered many interesting facts about the condition, including how to treat a schizophrenia patient,” he said.

Bagus collected materials and started to discuss the condition with his siblings. In order to broaden his perspective, he started an Internet discussion group in early 2001.

He received an onslaught of input from the discussion group, from the supporting voices of affected families to people who live with schizophrenia.

Bagus also recalled that a mental health specialist contacted him and invited him to his office. The doctor suggested continuous medical treatment as a solution. After spending weeks in discussions with his parents and other family members, Bagus eventually sent his brother to a treatment facility in Ciganjur in 2005.

Bagus says right now his brother, who turns 47 this year, runs a small cigarette kiosk near his home. He acknowledges that socializing with others is the best therapy for him now.

“He looks and acts pretty normal right now. In fact, he is also quite reliable as I can depend on him to accompany my father to the hospital,” he said.

When asked about how much has been spent for his brother’s 17-year stint in treatment, Bagus half-jokingly says that his family could buy three BMWs with that money.

He acknowledges that there isn’t actually any difference between the treatment offered by the facility and other doctors that they had met with. They all use the same medicines and treatments.

The only thing that is different is that now the family is more prepared. They now have a better understanding about how to treat schizophrenia, and that has made a huge difference.

As for the discussion group, Bagus moved the group to Facebook in 2009 and it garnered more attention there. He says there are 6,500 people in the community that originated from his discussion group.

Bagus’ story about his brother’s treatment moved his friends to nominate him for a Dr. Guislain Award earlier this year. The Dr. Guislain Award is given to an individual who is considered to have contributed to reducing the stigmatization of people with mental illness.

The name of the award comes from Dr. Jozef Guislain, a noted Belgium psychiatrist who developed improved methods of handling people with mental illness. Before that, the only therapy was chaining people with mental conditions to walls and leaving them there.

The Belgium-based Dr. Guislain Award committee selected Bagus from 20 other nominees. Bagus brought home the award along with Rp 480 million (US$50,000) to be allocated to provide assistance for people with schizophrenia.

After receiving global acknowledgment through the award, Bagus has moved fast. He registered a new foundation called the Community of Indonesian Care for Schizophrenia (KPSI) so that he can move forward in providing assistance.

The new foundation has a house as a headquarters in Kampung Melayu, East Jakarta. It also plans to organize regular discussions on schizophrenia.

Amid the enthusiasm shown by people willing to fight for better healthcare for schizophrenics, Bagus can no longer hide his concerns regarding the treatment of people with mental illness in this country.

He cites the absence of a mental illness law and the lack of attention of state authorities during his brother’s treatment period as evidence of how little attention the government pays to the problem.

“We have no standard operating procedure on how to handle people with mental illness. Everything is conducted sporadically. That is why we still encounter people chained to the wall every now and then in this country,” he said.

The House of Representatives has removed a mental illness draft law from its agenda this year, a clear gesture that mental illness is not a priority.

But no matter how difficult the situation, Bagus says he will work as hard as he can and do the best he can to help those in need.

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