As a person living with epilepsy, Winfred Wanja has faced every kind of stigma in the book. She was shunned by people even before she knew she had epilepsy and on confirmation, more people exited from her life. A mother of two, what keeps her going is the knowledge that God knows her situation, and helps her even when humans fail.
Winfred’s troubles started long before she can recount. She was known as- the girl that falls- When she later experienced a stroke, she temporarily lost her eyesight and she was in hospital for two years. At which point she lost her speech. The community concluded she was bewitched and started to come up with all manner of solutions.
‘ Let her have sex with a chicken.’
‘No, she needs to buy shoes for her grandfather.’
‘No, no, only dog meat can cure her.’
‘What she needs to do is to slaughter a goat and feed it to men who have been initiated.’
At this point, her father’s money had ran out and he became very stressed out. The scans and tests she was being put through were expensive and nothing was resulting from the efforts.
No disease could be found yet, so again, people stated their tales.
‘She has been bewitched.’
‘She has HIV.’
‘She will die very soon.’
This last statement was taken further by the family when they went out and bought rice, in preparation for Winfred’s burial ceremony.
She survived and her father took her to the hospital for a second MRI.
“I was told the doctors cheered.”
The diagnosis was, she had TB of the brain. This had affected her nerves, causing epilepsy. She was taken in for a surgery of the eyes. She got her sight back but couldn’t walk and when she did she would stagger.
‘She is a drunkard.’ People said.
Later on her voice came back but she had headaches every day.
Her father died after Winfred finished high school but his last wish was for her to get an education.
She sighed up at Jomo Kenyatta University of Technology (JKUAT). She had frequent seizures while at JKUAT where she was studying IT, so her Academic advisors advised her to change her course. She changed to Diploma in Community Development and Social Work. Though she finished her course, she was not able to retrieve her certificates due to fee balances.
It has been a challenge for Winfred to find work.
“When people find out I fall, they won’t give me work in case I fall in their presence. But I got to eat and feed my children, and the only work available for me here is washing clothes, which doesn’t come often.”
“Another problem is my first boyfriend left when he realized the scope of seizures and the reality of living with someone with epilepsy.”
Her second attempt at love failed when the in-laws fervently rejected her and warned their son off her.
“I live in my family home and when my siblings come home, I can tell they view me as a huge burden to everyone.”
It has not been an easy life.
“ I remember one time, the only people who were willing to help me were the Akorino Church Women, who would dip me in a drum full of water and say their prayers for me. I didn’t like the practice, but it was that time when I had lost my voice and everyone said I was mental.’ She laments
REMAINING POSITIVE IN SPITE OF CHALLENGES
It has not been an easy path to tread, but Winfred has found a way to cope. She is a member of the Embu County Muungano Choir and one of the founding members of the Embu County Disability Forum. She uses this forum to share her story to encourage others. Her fight is for all those that are considered to have a disability, whether physical, intellectual and also the deaf and blind. As a Board Member of the Special Unit at ST. Monicah Primary School, she is working hard to mobilize the county Government to help the kids in the Unit.
Her advice to other people living with epilepsy
- Take your medicine as prescribed and trust in God.
- Don’t hide it from people.
- Avoid triggers
In her case, sticking to the drugs has helped her to observe improvements.
“I don’t urinate when I have a seizure anymore. My seizures are also less violent, you might not even notice unless you know me well.”
Seizures are triggered by a number of discomforts. In her case when she is on her menses, she takes a rest. She also eats well, drinks water and tries to get enough sleep.
Winfred hopes that more clinics will open up to increase proximity of access to medication. Her call to the government is to find a way to make the National Hospital Insurance Fund accessible to people with Epilepsy as they need their medication to function each day.