Sulami, 35, is wide awake, but unlike other people, she cannot get out of bed whenever she wants. For the resident of Mojokerto village in Kedawung district, Sragen regency of Central Java, lying down in bed is the only option she has as she has barely been able to move for more than two decades.

Sulami suffers from stiffness over her entire body, forcing her to spend most of her life lying down. She can only lie or stand up straight with the help of other people, without being able to bend her body or even her neck.

Sulami says she started suffered gradual paralysis when she was 10 years old. She recalls that it all started when she discovered a little lump on her neck, which then caused pain along her spine.

“I began to have difficulties moving my body when I was still in fifth grade of elementary school. At first [I could not move] my hands or legs, then other parts of my body,” she said in her house on Monday.

“Now I can only move my fingers, all of my joints are stiff.”

For the past 12 years, Sulami has relied solely on the help of her 90-year-old grandmother Suginem to carry out her daily activities, after her mother suffered from stroke. They live in a semi-permanent house in the village.

Sulami needs help to get up from the bed, but once standing, she can walk in a hobbling manner with a help of a stick.

Local people have nicknamed her “the wooden person” due to her condition.

Still, despite her struggles, she does not feel discouraged. To fill her time, she regularly creates handicrafts such as bracelets, ribbons or wallets from beads, which she often gives to people who come to visit her.

Village chief Sunarto said that Sulami had a twin sister Paniyem who died in 2012 from the same condition.

Due to Sulami’s condition and the fact that her family lives in poverty, the villagers agreed to help provide their basic needs, Sunarto said.

“She sincerely lives her life despite her suffering. Besides making crafts, Sulami also likes to recite the Quran and her voice when reciting the Quran is so thrilling,” he added.

Sunarto added that Sulami had once been treated at Moewardi Hospital in Surakarta but she asked to return home after only few days there. Sragen’s Health Agency and Social Agency also announced recently that they would send Sulami to Karyadi State hospital in Semarang. The plan was also rejected by her family because no one could accompany her to the hospital, he added.

Separately, orthopedic trauma specialist from Ortphedic Hospital of Soeharso Hospital in Surakarta Pamudji Utomo said Sulami might be suffering from ankylosing spondylitis, a systematic rheumatism that causes symptoms in muscles and joints.

Ankylosing spondylitis stems from inflammation in the spine and joints, with early symptoms including back pain, stiffness and fatigue. These symptoms also can get worse with time.

“There is still no cure for the disease. Medicine will only help to prevent it from getting worse,” he said.

Popular

To my horror, it’s just a movie!

RI, Australia strengthen partnership on taxing crypto assets

Pentagon chief congratulates Prabowo on being elected President