The challenges of living with epilepsy in a rural setting are immense coupled with ignorance which fuels stigma and discrimination leading to isolation. These reactions towards a person with epilepsy are more pronounced in an environment lacking basic amenities such as safe water and energy sources. Under these conditions domestic chores are a real challenge especially to girls in the homestead since they are the ones expected to fetch water and firewood, and to do the cooking.

 

Hope or Suubi (not real name) is a fifteen-year-old girl living with her grandparents in Kyanamukaaka SubCounty in Masaka District. She has been having seizures since she was three years old. Hope is the first born to her parents, who believe her birth came as a curse to them because their relationship didn't survive the strain of caregiving. They parted ways leaving hope to stay with her aging grandparents who have been struggling with her care in search of possibilities to tend to her. 

 

After numerous attempts at local remedies to control Hope’s seizures, her grandmother put little Hope in the hands of a local pastor who had convinced the family that Hope had demons that needed prayers and sacrifices to redeem her. Hope was prayed for but she never got better.

 

Her seizures were triggered by loud noises so these got worse during day and night prayers only increasing in frequency. The pastor returned her to the grandmother saying the demons in her were stubborn and needed more sacrifices than the grandmother could afford.

 

When we heard of her story our team set out to find Hope amidst   anxiety and anticipation. Each of us only imagined what mental state we would find her in, leave alone the physical! What would she be doing. Would she be receptive or would she shy away from the group of complete strangers that we were?

 

Through the dusty winding roads we made our way to her home and finally arrived at Jajja Musajja's (grandpa's). On arrival we announced that we were Hope's visitors. We were a cause of excitement and wonder. Who on earth would come to visit Hope?! The grandma curiously asked in Luganda, “Muvuddewa banyabo neba Ssebo? Muzze kumutwaala? Ngamunaaba mutuwonyezza! Literally translated: Where are you coming from ladies and gentlemen? Have you come to take her away, what a relief that would be!”

 

As we waited for Hope to come to meet us, we exchanged a few pleasantries with the grandmother, she explained that Hope had  previously gotten an injury while cooking. We asked about the cooking area where the accident happened and if we could be allowed to see it. She obliged as what we saw was an unprotected fireplace, typical to many rural homes. It was smoky inside with sooty mud brick walls, littered with bits of firewood. The rooms ventilation was poor with three mud bricks placed above the open fire pit to cradled the cooking utensil of preference. The poor air circulation usually requires more wood to get the fire hot enough to cook a meal. The smoke that ensues is often eye watering and triggers bouts of coughing.

 

By the time we stepped out of the kitchen Hope was already seated on a bench in the compound shyly pulling at the strands of her faded yellow dress. Hope appeared to be a happy girl and her grandma complained that she plays a lot but added that her boisterousness is typical of  girls her age and that she is swift when carrying out her domestic chores. She

loves school and is looking forward to attending class when she feels better from her burns. She fell in the open fire while cooking the evening meal. She had not yet visited the health centre which is four kilometers away, her grandmother was still waiting for a relative to escort Hope there.  Hope is quick to point out that she has to do her domestic chores every day before she can leave for school.

 

The day we visited their home Hope had not attended school at all because the previous evening she had fallen into the fire place when she got a seizure. Hope suffers frequent seizures and that wasn't the first time she'd fallen into the unprotected fire while cooking. Previously, she had fallen at the broken steps at the entrance of the kitchen as she was stepping out after warming food her grandmother had given her. The kitchen is outside the main house. Being the only girl and the eldest of the grandchildren at home, Hope has to cook, fetch water and firewood in spite of suffering epilepsy seizures. We found out that her adherance to medications is inconsistent which is another of the causes of her seizures.

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A little boy of about eight years came outside their half-finished house when their grandmother announced our presence. The front window frames were filled in with old sheets of roofing iron sheets, which looked like they were picked from a burnt house. We continued on a quick tour of the homestead where we found the kitchen utensils on a dingy old rack with saucepans on the ground. Ducks were enjoying a drink of dirty water on the ground near by to quench their thirst. The back of the house was no different from the front.

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We quickly learn the room with a gaping hole at the window was Hope’s room. My jaw dropped, I could only imagine the security risk this could pose. All the structures in the homestead needed a makeover however rudimentary. As we were still moving around the compound, the grandma called out to Hope to hurry and fetch water so she could prepare some tea! I inquired where Hope got their water for domestic use and she replied with a smile, ‘”Down the valley not far from here”, she said. That cheeky smile seemed directed to me who understood that the well was far and she would not be back soon enough. We later came to learn that the water source was shared with animals and was not fit for human consumption. We encouraged the family to get Hope treatment for her wounds with a resolve to come back and revamp the homestead to make it a better place of abode for Hope, her cousins and her grandparents.

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Two weeks later, with the support of community members in the neighbourhood, we constructed an underground water tank with a capacity of 3000 liters and planted grass all around it, a safe and wood efficient cooking stove, a vegetable garden, replaced Hope’s window with a wooden shutter, constructed a shower room, and mended the steps at the kitchen entrance.

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This indeed was a makeover that brought a smile on each family member’s face. Hope can now participate in cooking family meals in a safer environment.

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​There are no more fumes getting in their eyes; the stove uses very little pieces of wood thus saving the environment and there are no more open flames to trigger seizures as Hope cooks. The underground tank supplies the family and their neighbours with safe potable water. There is no more fetching water from the distant well, which gives Hope more time to engage in other activities, and time to play with her friends.

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