Rising Above Illness & Misfortune

Jakarta Globe, Dyah Ayu Pitaloka, Aug 03, 2014

Catur Handayani, 18, takes care of her two younger siblings, one of whom has
 polio, despite suffering from a debilitating tumor herself, for which she cannot
afford treatment. (JG Photos/Dyah Ayu Pitaloka)

Catur Handayani’s thin hair is wet, her face fresh from a shower. She lives in a house in Codo village in the East Java town of Malang. By 10 a.m. she has finished all her chores, which include cleaning the house, washing her two sibling’s and father’s clothes, and cooking their food. She carries out her role as the mistress of the house, despite suffering from a lymphatic vessel tumor for the past five years that has disfigured her face and subjects her to searing headaches.

“I became sick in the fifth grade. I just found out about the disease after I was sent to the hospital in 2013. I stopped going to school after I became sick,” says the 18-year-old, her voice hoarse and her breathing raspy.

Catur, the fourth of six children, is thin but her eyelids are swollen and bulging.

“My eyes became swollen after the chemo,” she says. “I’m supposed to do chemo five times, but I only did it once, in June 2013. My father didn’t want to take me to the hospital because there wasn’t any money, and my pain got worse.”

Every night she feels sore. If she works too much she gets tired and dizzy. But she keeps doing the chores she has always done since her mother and later her step-mother left her father. Her three elder siblings have also left home and started their own families.

Catur starts her day by fetching water from a well outside the house to fill up a tub in the bamboo bathroom at the back. After that, she sweeps the dirt floor of the two-bedroom house, then does the laundry and bathes her little sister, Ana Mayasa, 12, and brother Slamet, 6.

Ana, who has suffered from polio since birth, requires special care. Slamet has never attended a formal school and has difficulties communicating.

“I bathe them with a sponge and then change Ana’s diapers. She can’t walk,” Catur says.

On Wednesdays, Catur fired up a side dish of salted fish and tofu to go with their rice. The fuel for the stove is a pile of dried palm branches. “I gather the branches from around the yard. Usually my father also helps to gather them,” Catur says.

She says she feels lucky when, in her spare time, she can tune out in front of the small television in the room that she shares with her sister and brother.

The TV was a gift from donor last year. Another donor gave the family a mattress a week earlier, with pillows, and Catur says she’s been able to sleep more comfortably since.

Sugiyono, Catur’s father, is the family’s sole breadwinner. Every day he goes out to the local market and sells secondhand bicycles. When he leaves, he locks the front door from the outside. “If it’s not locked, my son Slamet can wander around and get hit by a vehicle,” he says.

The bamboo-thatched house sits on communal land owned by the village. Sugiyono previously moved around, always in the vicinity of the market, before the house was built. All the material to build it was donated by the village, while most of the furnishings come from Samaritans in the area.

“I got help getting electricity from my neighbors. My house depends on the village head. If he wants to reclaim this land, well, I’d have to move,” Sugiyono says.

He says he rarely makes enough money to afford food every day. He’s on a health insurance scheme provided by the government, but still can’t afford to get treatment at the Saiful Anwar hospital in downtown Malang, 30 kilometers away.

“We were once given a list of medication from the hospital. Whenever my daughter’s headaches start up, she has to buy the medicine on the list. It costs

Rp 5,000 [42 cents] per medication,” Sugiyono says.

In spite of their struggles, Catur hopes to recover one day. She does her chores gamely, without complaining or letting the pain get to her. The support and attention from the generous people around them has strengthened her spirit.

“If I recover from this pain I want to return to school. Now, I often feel dizzy when I think too hard,” she says.

The Codo village chief, Joko Sugiharto, says the family is one of three that live on land borrowed from the village. In each case, the village has built them a simple house to live in.

To help with medication fees, the whole family is registered for medical aid. In addition they are also eligible for state-subsidized rice, or raskin, and cash handouts from the government, or BLT.

“For their medical treatment, it’s all free. The only reason they don’t go is because they don’t have the money to get to Malang,” Joko says.

Last year, the village pulled together to help get Catur to a hospital. At the time all the medical expenses were covered by the health coverage, while other costs were covered by local benefactors.

“The villagers give because they can’t bear” to see the family suffer, Joko says.

At around 11 a.m. that day, four young men visit Catur’s house: “They’re the sons of some rich people at Wajak Market, and they want to take Catur back to the hospital for treatment,” Joko says.