Despite the challenges, she’s still keeping her head up. By Tay Hong Yi
Ms Farnizah works at the mobile library kiosk of Eunos Community Club under the CDC Community Employment Programme. Photo: Jonathan Choo / The Straits Times
There was no heartbeat detected in her womb, her doctor had said. It was the second unborn baby that Ms Farnizah Minsawi had lost, due to her frequent falls whenever she had epileptic seizures.
Ms Farnizah, 40, works at the mobile library kiosk of Eunos Community Club. She has a son, now 17, and a daughter, now 15, who were born before the two miscarriages. During her own infancy, a high fever had left her with epilepsy. At age six, she was diagnosed with the condition at the National Neuroscience Institute (NNI), where she still goes for follow-up checks.
Epilepsy is a neurological disorder characterised by sudden surges in brain electrical activity, which manifest as seizures. More than 20,000 Singaporeans live with it and the severity of seizures varies between individuals. For Ms Farnizah, intense seizures lasting up to three minutes are a regular occurrence. She said through a Malay interpreter: “After the birth of my first child, my seizures started to strike monthly, always around the same time as my period.”
Dr Sheila Srinivasan, a consultant at the NNI’s department of neurology, said it is common for seizures to coincide with the menstrual period, due to hormonal changes. Ms Farnizah’s seizures are characterised by a vague feeling of unease which rapidly progresses into a fit that dulls her sense of pain and balance. Sometimes, the episodes left her disoriented and with bruises that she had no recollection of.
But a prominent reminder of these episodes is a thick scar across her left forearm, pressed into her flesh by the rim of a hot frying pan. She does not remember the year but said she was cooking at her parents-in-law’s home when a seizure struck. “I tried to suppress it, but couldn’t,” she added. Fortunately, her brother-in-law was at home and heard the clang of the falling pan. She said: “He turned off the flame, cleaned everything up and waited for me to recover.”
Despite taking the anti-epileptic drug Epilim and folic acid supplements, her condition is only under partial control. In fact, the seizures gradually got worse after the birth of her first child. They have also caused her to become incontinent since last year. Due to her sub-optimal response to medication, the doctor proposed surgery, but Ms Farnizah and her family objected to the suggestion.
Her epilepsy has caused her marriage to break down. Her husband divorced her five years ago after 10 years of marriage. She has custody or her two children and is left to provide for them and her parents. She said: “My father has retired, but he is now working part-time.” Her salary is between $400 and $500 a month and she is not on social assistance. Her children receive free school uniforms and education subsidies.
Still, she might not even have a steady income if not for an interim job scheme, underscoring the difficulties faced by epilepsy sufferers in getting a job. She is employed under the North East Community Development Council’s (CDC) Community Employment Programme, which pays a minimal stipend to people seeking permanent work.
According to a North East CDC representative, a total of 1,700 people have benefited from the programme since it started in 2011. They are employed for up to six months, but Ms Farnizah was given an extension as she is still unable to find a job. She has been under the programme for most of the last five years. Her short stints as a petrol kiosk cashier would often end when she had seizures on the job.
She has stopped declaring her condition on job applications after realising that firms are unwilling to hire her, even though the doctor has certified her fit for work. “Employers said they were concerned about the insurance,” she said. Despite the discrimination she has faced in her search for a job, she is optimistic that she will find a permanent job.
Has she ever succumbed to negative thoughts? “I have always wished that I did not have epileptic seizures,” she said with tears in her eyes.
A version of this article appeared in the print edition of The Straits Times on February 21, 2017, with the headline ‘Optimism in the face of epilepsy‘.