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Updated: Jul 20, 2021

Image courtesy of ArtPal.

There’s a first time for everything — it is said.

I remember vividly my first time. We were seated under a canopy at one of our army friend’s house on a dark, breezy South Sudan evening. Every so often our feet jerked about, battling the variation of insects buzzing around the lamps we had set out. On a normal day I would be flailing my arms and ducking for cover to escape the flying bugs but that night I was too engrossed in the banter to notice. We enjoyed a good laugh after what had been a fantastic Rwandese dinner. I had a glass of red wine in hand — this was my way of detoxing after what had been a peak season when my colleagues and I were locked-down in the “middle of nowhere” deep in the fields of the world’s youngest nation.

I was surrounded by my boys — the Covid Crew as we call it. People from different parts of the world, brought together by the need to cope through a difficult season of uncertainty; locked far away from our comforts, our homes and our families. Being the only female in the group came with its perks. I was treated like a VIP! An egg sometimes.

I took a sip of my wine and the next thing I knew I was on the floor throwing up. But I couldn’t — still can’t —  remember how I got to the ground. Ritchie, my closest, held my head in his lap, “Get it all out Janet. It’s ok. How are you feeling?” There was a tremor in his voice. Alex, my dearest, was trying to lift me up. There was a lot of chatter. Boots shuffling around me with an unusual urgency. An ambulance. More chatter.

‘Geez,’ I wondered. ‘An ambulance for a puking episode? C’mon guys.’ But any attempt to voice my thoughts elicited more feelings of nausea and a dizzying sensation. I knew I was not drunk. But why did I feel like I was? My wine glass lay beside me, it’s contents seeping through the concrete floor.

Shortly after, I was at the nearest clinic, run by the Rwandese military. Needles. IVs. More chatter. Alex fielded the questions. The others were a step away talking in hushed tones. I was still lost, but aware that something was off. I heard Alex describe the events that had led to my being there. Alex is Tanzanian and speaks fluent Swahili. He spoke fast. His words climbing over each other. If it were any other day I would be in stitches, because my understanding of Swahili is down there, right with my understanding of Dholuo. But for all the things I didn’t understand I picked one word he kept saying over and over to the doctor, “Kifafa.”

He then started to fill in gaps I didn’t know I had. That in between roars of laughter, my body went stiff, my eyes rolled back and I fell to the ground like a wet cloth. That my hands and legs were jerking as if I was fighting an unseen enemy. Or fighting my premature departure to the afterlife. And then as suddenly as it started, it ended. And then I was still — my eyes wide open — seeing but not seeing. Meanwhile the boys argued about how to place me: Alex wanted me on my side, Ritchie had me cradled in his lap, Thabiso had my hand in his. All of them guarding their egg.

That was my first seizure.

Being the first time and having no accompanying symptoms, it was quickly forgotten — remembered only as the boys told and retold the events of that evening and how scared and confused they were. But then two months later I got another seizure. This time, I was leaning on the arm of a sofa in my prefabricated accommodation, sending a text or doing some thing or other on my phone. Then, it’s as if someone swiped left and I was in a hospital bed. Again with a gap in time.

Graciously, Alex my constant companion was present. His description in fluent Swahili later on had us all in a twist. Afraid. My family of doctors worried. My bosses worried.

“Umewahi kuona mtu akiwa anakata roho?” (Have you ever seen someone in their final moments of life?)

He described how I gurgled and fought to breath as he tried to make sure I didn’t swallow my tongue — using skills he had mostly learned in his line of work and on football fields where he played. As my body went stiff and cold and my eyes rolled back, he realized this was a whole other kind of seizure. He reached for his phone and called Ritchie — who called the hospital to let them know he was inbound. He then ran to my house, finding me jerking and delirious.

“Why are you killing me?” I kept shouting as they lifted me along with the cleaners to the car and off to the clinic.

The doctor took one look at me and called for the ambulance to rush me to the more serious Level II hospital run by the Indian army medics. There, I spent a night in the Intensive Care Unit as the team of specialists tried to figure out what was trying to kill me at forty — when life had JUST begun. When I came to at the hospital, I was in disbelief when they described the events to me. My short term memory had been cleaned out and the more I tried to remember the more it felt like trying to grasp grains of sand slipping through my fingers. This time, I had to be evacuated.

So it was a flight, and another and another. And then a hospital, and another and another. Blood tests, EEG, ECG, and an MRI scan. Doctor visits. Who knew Neurologists were so hard to come by. Queues longer than the one at my polling station on election day. And even after doing everything there was, the results were inconclusive. One doctor I saw gave me anti convulsants and said, “You are epileptic unless ruled otherwise so take these meds until you feel you won’t have another seizure.”

‘What did you just call me? My tests are all normal. That means I am fine, doesn’t it?’ But I didn’t tell him this. Instead, I resisted taking the meds. I resisted the diagnosis. I am not epileptic, I said to myself. So I pegged it to my stressful work environment and continued on, enjoying my prolonged sick leave.

The day, however, that I had a seizure at the dinner table while enjoying my favorite chicken piece — the gizzard — was the day that I accepted that life as I knew it had changed. One minute I was chewing, the next my sister was on the phone asking me, “Are you ok? We can come take you to hospital.” I felt lost. I was on the floor feeling nauseous and weak in the knees. The trauma and tears on my children’s faces was enough. It ate at me like acid splashed all over my body.

After that I started on the medication. And when I was stable enough, I went back to South Sudan. Only to have a seizure when I was alone in my house; and I only realised because I woke up on the floor of my bathroom with a bleeding tongue and a splitting headache. Turns out I convulsed and hit my head on.. something. The worst thing is I don’t even know what brings on the seizures. I audit my life minute by minute, hour by hour and come up empty. The seizures are as random as the roll of a dice. I don’t know what triggers them and I don’t get auras.

With time I have accepted my life as an adult epileptic. The acceptance came with fear. The fear of being alone. The fear of driving. The fear of death. I try not to dwell on it but it’s there; an undercurrent. And why? Why now?

Yet, when you’ve nearly died all those times, you live. Nothing gives you perspective more than knowing that your time here is finite. So I am strengthening my relationships. Not wasting time. Happy.

The day Alex told the doctor I was seizing like I was fighting for my life I decided, I might as well fight for it.


Epilepsy is a condition that causes people to have repeated seizures that are caused by abnormal electrical activity in the brain.

Seizures can make you pass out, move or behave strangely.

Epilepsy can start at any age.

There are different kinds of seizures. Each with a different set of symptoms. Most last only a few seconds or minutes.

Some people often pass out, get stiff, and then have jerking movements. Others have less dramatic symptoms.

E.g. some people have shaking movements in just 1 arm or in a part of their face. Other people suddenly stop responding and stare for a few seconds.

Sometimes, people can tell that they are about to have a seizure. They have a certain feeling a certain smell. This feeling or smell is called an “aura.”

Tests: You will probably have 1 or both of the following:

●EEG — An EEG measures electrical activity in the brain

●CT or MRI scan

Treatment: — Epilepsy is treated with anti-seizure medicines. These medicines can’t cure epilepsy, but they can help prevent seizures.

There are different anti-seizure medicines. The right one for you depends on your seizures and other factors.

You should know that:

●These medicines can cause side effects. They can make you tired or dizzy.

●They can affect other medicines you take. Anti-seizure medicines can keep birth control pills from working well. This can lead to an unplanned pregnancy.

●You might need regular blood tests to check the amount of anti-seizure medicine in your body.

Will I need anti-seizure medicine for the rest of my life? — It depends on your seizures. If you don’t have any seizures for 2 years, your doctor might talk with you about stopping your medicine.

But don’t ever stop your medicine on your own.

To lower your chances of having more seizures, you can:

●Take your medicine as directed

●Get enough sleep

●Eat a healthy diet

●Avoid alcohol or using drugs

What else can I do if I have epilepsy?

You should:

●Wear a medical bracelet to let others know about your epilepsy.

●Let family members and friends know how to help you if you have a seizure. They can position you so that you will not hurt yourself, but they should not put anything in your mouth.

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