Anne Mugisha and her daughter have taken up arms against epilepsy

When Joannah Nahurira Bwomezi was diagnosed with epilepsy, she thought it was like any other illness for which her mother had taken her to hospital. Simple medication, she thought, would in a matter of days, see her jumping and back to school where she was one of the brightest girls.

“I thought it was like a simple cough that would go away soon,” she recounts, smiling. You could forgive her for holding such a simple perception of a major medical condition that epilepsy is. She was only eight.

Her mother, Anne Mugisha, was not so lucky as she did not have the advantage of age and therefore naivety about the seriousness of the diagnosis. “I was angry and desperate,” says Mugisha, better known for her political activism days with opposition political party, Forum for Democratic Change (FDC).

Epilepsy is a neurological disorder in the brain that causes repeated seizures. Seizures may cause problems with muscle control, movement, speech, vision, or awareness. The type of seizures Bwomezi had is, in medical terms, referred to as absence seizures.

This diagnosis was made nine years ago in 2005, but Mugisha still displays some level of anxiety narrating the incidence today. Under the cool evening breeze at the balcony of Spurs Restaurant at Garden City Shopping Mall, we started the interview on high note talking about her communication functions with the UN in Somalia, but at this moment her voice trembles with emotion.

Her mother expected and suspect the worst, given her daughter’s symptoms. Bwomezi would sometimes, say amidst a conversation, stop mid-sentence and stare at nothing, then after a while recover her senses.

Mugisha narrates how once at Entebbe International Airport, Bwomezi suddenly collapsed to the ground with stiff muscles. Despite all this, the epilepsy diagnosis hit Mugisha hard.
“I was in disbelief. I questioned my faith in God. I wondered how that could happen to this innocent girl. I wished it had happened to me instead,” she says.

The doctors at the Children’s National Medical Center in Washington DC where the diagnosis was made told Mugisha with medication, her daughter would be healed by age 12.

Epilepsy becomes severe
Bwomezi who lived and studied in Florida, USA, continued to receive treatment there and, while in Uganda where her mother lived, at Paragon Hospital.

However, despite the medication, the seizures increased in intensity overtime and by 2012, Bwomezi, whose name means peace, would have a full range of uncontrolled muscular spasms of the neck, legs and arms which would last 10 to 15 minutes.

“The attacks left me feeling so exhausted that all I could do was lay in my bed because I just couldn’t know what would happen to me if I moved,” she narrates.

Mugisha helplessly endured as much pain as her daughter through these attacks, sometimes as many as 10 in a single day. “I have seen her fall down, cut her finger, pour boiling water on her belly, knock her head on a wall and the feeling is terrible.

Each time she has recovered fully but I live with the fear that one day she may have a nasty accident from which she may not recover easily or at all,” says Mugisha with a pitiful face.

Three brain operations in 10 days
Several medical tests were carried out and doctors recommended she be operated on in 2012. Bwomezi underwent three operations on the brain in 10 days, a period Mugisha would rather not remember. “It was the most trying time of my life.

No mother deserves to go through such. I would break down and cry yet Joannah was brave. She would say, ‘Mummy, everything will be alright’. And that would make me cry even more for it should have been I telling her so.”

Her health condition did not improve despite the specialised treatment she received. Epilepsy had adversely affected a part of Bwomezi’s brain that attempting further operation would most likely make her lose her speech. Mugisha was thus given two options; either doctors had to risk an operation or put Bwomezi on treatment for life. Mugisha chose the latter for her daughter. “I know it is crazy but it was important for me. I wanted to hear Joannah call ‘mummy’.”

Psychological toll, tough decisions
Bwomezi takes medication every 12 hours since, which has reduced the intensity of seizures from an average of 10 in a single day to about two a month. Her state of health, however, did not only adversely affect her grades in class because she would not attend school regularly, but had a toll on her psychologically.

“I slipped from being one of the smartest girl in class, one of the best in the mathematics class to ‘oh, there she is, the girl who struggles in her brain.”

Bwomezi’s father died in 2013 when she was 15. Life is now about her younger sister, Hannah Bwomezi, 14, their elder brother Lionel Muhangi, 29, Bwomezi, and their mother. So in the middle of her daughter’s poor health, Mugisha made hard decisions, one of which was to quit political activism in 2012, which she had done for 12 years.

“I loved what I was doing. I had put my life into activism but for Joannah’s life, I quit. It was a hard decision to make but I had to. My daughter needed me. One day, I was on the streets for Walk to Work demonstrations and the next I was on the plane to Florida to save my daughter’s life. Besides, with the UN job my daughter would be assured of the best medical cover.”

The fighting spirit
Bwomezi refused to be held captive by epilepsy. She openned up about her situation in her school first. “I was tired of hiding myself in a closet or being ashamed of being epileptic. I told my classmates and teachers about my condition. I knew I would not only be honest with myself but much safer for when I got seizures they would know how to handle me. When I spoke out, I felt a huge burden lifted off my chest,” says Bwomezi with a perky voice.

She shares her story on her facebook account and blog, which has earned her invitations in schools to share her story. In October, she was in Kampala with her mother at the invitation of Namugongo Fund for Special Children.
“In life, you either choose to be sad and sorry about yourself or go out in the world to tell your story. My condition has helped me become a better person. I was a mean, angry and frustrated girl because I would ask myself why it had to be me of all people. Today, my joy is in reaching out to those going through similar or even harder situations.”

But that is not to say all is well. “I take medication every 12 hours but sometimes my body just refuses to cooperate and I still get seizures. But there is an inner voice that says ‘Joannah, don’t pity yourself, be strong’. Every time I get a seizure, I look at my pictures in theatre and say to myself ‘Joannah you have come this far, you cannot afford to give up now’.”
It is that fighting spirit in Bwomezi that keeps her going and perhaps her mother too. “I used to ask myself why it was me with an epileptic child,” says Mugisha. “But then realised God has blessed me with this daughter. He could have given her to another mother. I feel privileged to have Joannah. God does not give a burden that you cannot carry.”

Did Mugisha’s political career end?
A UN staff, Mugisha is not at liberty to comment on politics and FDC saying after all she was not the sole custodian of opinions but hopes, just maybe, one day she will return to what she loved doing. “It is a calling I cannot escape but for now it is too early to talk about legacy.”

Mugisha says her focus is on her job and daughter’s life. “My decision has turned out to be a blessing. I have seen many gifts in Joannah that never I would have (in activism). She has a passion to encourage others. One time I was invited to school to listen to her talk to her classmates and that gave me strength.”

Mugisha works in Somalia, but her family is stationed in Nairobi where Bwomezi attends an international school in grade 10 (high school). Mugisha is away from her family for three weeks in a month. During that time Bwomezi stays with a helper. She says that has made her stronger and independent.

For Mugisha it is a privilege to have Bwomezi, who in turn is proud of who she is. “People with conditions or unfamiliar diseases may be looked at disgracefully but I want people to know that there is nothing wrong with such people. For they who have it, just learn how to live with it and be proud of who they are. I am proud of who I am.”
Living with epilepsy is what she has learnt and helping others with similar conditions is her aspiration. She likes taking pictures and modelling, and wants to be a marine biologist. Like she smiled at epilepsy diagnosis nine years ago, Bwomezi smiles at her dreams.

“It is going to take a while, but I have to remain positive.”